The Falcone Family

Cleaning House and Adoption Issues part 2 of 2

2012-02-12T22:01:00.000-05:00

So my other thoughts when I stumbled upon this picture was an aching with love for Libby and a wish that we could protect her from all pain. I wish our total and complete love for this cute little thing could prevent and protect her from the feelings of uncertainty, loss and feelings of rejection that seem to be unavoidable with adoption. Mark and I have been completely head over heels in love with this little girl since the moment we laid eyes on her. Libby's adoption comments began at the age of five and usually come in response to being disciplined, "she wishes she were adopted by a nicer family" And recently we were talking about her birthmom choosing us to be her parents and apparently she had a lightbulb moment, "If my birthmom had chosen a family who had more money, then I could have a horse right?" {I'm not going to lie, that one stung a little.}

Then there was a time period when she was googling "taking care of a baby" because she wanted to understand why her birthmother was unable to care for her. It hurt my heart that she was searching for answers to questions that she felt she was unable to aks us.

Recently and most troubling was when I told her she needed to help with something because she is a part of our family and she responded with, "Barely, You know, because I'm adopted." This prompted a lengthy dinner time discussion in which we talked about family and what makes a family. I always welcome these discussions as difficult as they may be. It gives us a chance to clear up any misconceptions she may have conjured up in her little head. I was very proud of us because we were careful not to rush through the conversation and did our best to hide any uncomfortableness. Putting our insecurities aside is often difficult.

I wish the amount of love we have for her could prevent those little twinges I see in her eyes when I have to tell doctors that we don't know her family medical history or when someone talks about family members looking like each other. I wish she would not feel like someone "gave" her "up" but I'm sure some days she will see it that way. I hope we show her how much she was {and is} wanted by us and how happy we are that she is a part of our family. This picture was a good reminder for me of just how much we love her. I explained to her that when she came into our lives, she made us a family. She seemed pretty pleased!

Getting off the bus

2012-02-10T21:15:00.001-05:00

Click on the picture to play. Sorry it is so choppy. No I am not drunk, just not a good videographer. And he is not close to being run over by the car going by.

Cleaning house and Adoption Issues Part 1 of 2

2012-02-07T08:54:00.000-05:00

I have been on a three week cleaning and reorganization project. A very sweet friend who is superorganized has been helping me. She spent three hours here one Friday helping me discover unchartered storage areas in my house. Anyway, I am proud of myself for sticking with this and am sure the end result will be worthwhile. I will never be a Type A personality but I am hoping not to spend an hour a day looking for lost items!
Through all of this I have stumbled on numerous things from the past that have made me smile and cry. Some of the things remind me of how far we have come, from Mark and I disagreeing if there was something "wrong" with Nathan, through knowing there was something wrong but not knowing what and all the way to dealing with the definitive diagnosis. It takes me back to a time of blissful innocence. Infertility is painful but having two children with a progressive, fatal disorder is a deeper more agonizing kind of pain from which there is little escape. So pictures like this, are difficult for me to see. I was proud of myself for stopping several times from looking through things I knew would make me sad, things like Libby's progress report at a typical preschool. But this picture was in the middle of a file folder containing tax information!

This picture is from February 2005 so Libby was almost two years old. She is so stinkin cute! It reminds me of how normal things were then, how much we enjoyed her! We had waited so long to be parents! I was actually newly pregnant with Nathan so it was a time in which I felt that our trials were behind us. We were past worrying that someone from Libby's birthfamily would appear and done spending money on expensive IVF treatments. It reminded me of all the pediatrician visits from which I would leave happy as can be. I proudly took full responsibility for Libby's weight gain and ahead of schedule development! Little did I know how wonderful it was. I am so sad that we did not get to experience that a second time. Nathan and Bennett's early childhood have been so painful. Each appointment dreaded and many met with disappointment over a lack of weight gain and other reminders of their genetic disorder. Just today I had a three year check up for Bennett. The pediatrician seemed sad when he noted how Bennett's little body has become just like his brother's body. It reminds me that this disorder is hurtling along regardless of how much we fight it by praying and fundraising. Sometimes it just seems all bad. Whem the pediatrician asked how Nathan was doing in school, I described Nathan having very minor difficulty focusing, looking around, worrying about his peers. It was an effort to bring some normalcy to Nathan. After all, what six year old doesn't daydream in Kindergarten? But the pediatrician responded that we don't know if this could be a result of Progeria or even from prematurity. That threw me for a loop! It made my mind go crazy worrying about how Nathan and Bennett's prematurity have affected their cognition, development and behavior. This is turn had my mind thinking about all the unknowns regarding Libby's inutero experiences. Did she get everything she needed and was there anything she was exposed to that affects her development, behavior or cognition? We don't know. And all these unknowns sometimes feel like a Mack truck sitting on my chest. Nathan is fine with his appearance now and is able to get on and off the bus, but what about a year as his skin becomes more wrinkly and his muscles become stiffer.

At a church womens retreat last fall, our bible verse for the weekend was Philipians 4:6, "Do not be anxious about anything but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Every situation? Really? When I hear people on Oprah-type shows talk about overcoming adversity, they are not talking about us. They are talking about the end of a relationship, the loss of a house or something else equally difficult but not having two young children age before their parents eyes. But the Bible? That must pertain to our situation. Its funny how being this low is forces you to depend on God for strength and hope. I can honestly say that I don't know if I would be here spiritually if it weren't for our current situation. I would have thought we were doing fine on our own! One of the few good side effects of having two children with Progeria.

Thank you!

2012-01-31T03:32:00.000-05:00

Just wanted to say a quick thank you to those who read the blog and either commented or sent an email in the last few weeks. I really appreciate the kind words, feedback about Nathan's hematoma and the advice about signing him up for T-ball. It is so helpful to be reminded that we need to let him have some fun too. Even though the chance of a fracture or hematoma from a fall is highly likely for our boys, we have to let them take some chances. As much as I want to follow them around, make them wear helmets 24/7 or outlaw footie pajamas, I cannot (although the footie pajamas are mysteriously difficult to locate sometimes-wink wink). The difficulty is keeping them safe while trying to minimize the impact on their emotional and cognitive development. Anyway, thank you again for all of your kind words, thoughts and prayers, especially from complete strangers!

Also, I forgot to mention that prior to the fall and the hematoma, I was feeling so much better about Nathan because he can now........get off the last bus step by himself!! I was holding one hand while he jumped but he began jumping off without any help! I am beyond thrilled!

Family Talk

2012-01-18T12:29:00.000-05:00

I have told several people this story so if you have heard it, please feel free to skip this one.
For Christmas Santa brought us a game called "Family Talk." It features little cards on a ring that can be asked at dinner and encourage interaction and conversations. We have played a couple of times (much to Mark's dismay) and a few weeks ago Libby read this question;

I winced because I was not sure how this would go but Libby began and said her freckles, Mark (who had to think for a long long time!) said his nose, I said my complexion and all eyes went to Nathan. There was an uncomfortable silence, he put out his hands and said...."nothin!" He looked so puzzled! Mark and I being the horrendous superficial parents that we are asked if he was sure it would be nothing. Mark suggested he might want to have hair. I suggested he might want his nose or fingers to look more like everyone elses. Finally he said that he wishes his veins wouldn't stick out so much. I wish Mark and I would have left him stick with his first answer but now we know. It isn't that big of a deal for him that he looks different! It is a bigger deal for the people around him, his parents and sister. If he keeps this attitude, people that he encounters aren't going to care about his appearance either. As parents we just want to make sure our boys are not defined by their appearance or disorder but by "the content of their character" per Dr. Martin Luther King.

Libby in charge!

2012-01-18T12:14:00.000-05:00

I'm a little behind in the things I wanted to post about so here goes two late ones!

Libby, the fearless leader of the three decided to look up some information about Martin Luther King Jr. (It was MLK day at the time.)

Libby has her own room but Bennett and Nathan share a room. For the longest time Libby cried and fussed and whined about the injustice of having her own room. "I'm the only one who doesn't have anyone to share a room!" After trying to convince her that she is lucky to have her own room she finally wore us down. Actually, we decided that this is one of the few things that we could actually change in her life when so many things are out of our control. We had the bunk beds but were only using the one twin bed for Nathan. We bought them before knowing we were going to be having two fragile children. So in the summer, we put the bunk beds together expecting that Libby would sleep up there a few nights and the move back to her own room. Of course as usual, we were wrong. She has not slept in her bed since. She falls asleep much more quickly with the comfort of her brothers in the same room. It used to take her hours to fall asleep because of anxiety with many trips out of the room for water, batteries for her flashlight, tissues and a mulitude of other excuses to seek comfort. We did draw the line when they asked if we could put up a pink border in the room but for now it is working.

So anyway, last night, Libby made up a little makeshift bed beside Nathan for Bennett. He is still in the crib across from the bunkbed and did not sleep on the floor, but we thought it was cute! Libby is never short of bright ideas!

Tough Weekend

2012-01-17T12:57:00.000-05:00

We had a tough weekend here at the Falcone household. Mark spent six hours at CHOP emergency room because Nathan developed another hematoma. About a week ago he fell in the living room and hit the side of his head on a rocking chair. He tripped over a book which I had left on the floor because I am trying to reorganize our house. So in my efforts to clean up the toys so we are not falling all over them, Nathan falls on one of them. He cried and had a scratch on his side on which he had most of his attention focused. I did not see him fall so don't know how hard he hit his head.

So fast forward to this weekend and on Saturday morning, he and Libby were playing doctor. Libby was examining his head and said that the side of Nathan's head was hurting him. When I took a look at his head and touched it lightly with my finger, he winced. So I summoned Dr. Mark and he discovered the soft squishy hematoma. We knew (or were hoping) it would be a wasted trip but knew that the right decision was to have him seen at CHOP. So Mark took him down and thankfully he does not have any kind of fracture, just the hematoma.

I was a mess for the six hours waiting to hear of the outcome. I could not concentrate on anything or get any of the many things done that needed to be done. He has not had one in so long that I even had crazy thoughts of him playing T-Ball this spring! They flyer says age 4 and up so I thought maybe he could participate! I even found him a pair of cleats in a very small size! (Little Wonders, the gym where Nathan took classes closed and he really misses the sports class.) That no longer seems like a good idea.

It is simply has made an already anxious mom, much more anxious. I have been driving Mark crazy checking to make sure he closes the gates to the stairs. I am constantly on edge. During my reorganization I moved lots of the kids toys upstairs because our living room is fairly small. But with them playing upstairs and listening to the clunking and crashing of normal play, I am second guessing that decision. I am wishing more and more that we had a one floor home.

Anyway, for some reason it feels like a step backwards that a simple fall results in a hematoma. I also do not know what if any problems result from multiple hematomas. Thanks for listening if you read this whole thing.

Help Us Live

2012-01-16T16:06:00.000-05:00

Whenever I talk about the boys condition I use the phrase "shortened lifespan." It's a nice way of saying that they will die at a young age. I have difficulty even writing those words let alone saying them. We do not know what that age will be but we know that they will not live into thier forties or fifties (at least not without a miracle, which is possible). In the last few weeks I have seen posters in bus stations and on the sides of buses with pictures of little kids who are currently undergoing cancer treatment with the caption, "Help Me Live" or something similar. I'm wishing we could get this collage of Bennett on the side of a bus with the phrase "Help Me Live" or "Help Me Get My Hair Back." or Help Me Get Big." or "Help Me Get My Teeth." or "Help My Body To Stop Aging Way Too Fast" I know there are fewer children that will benefit from a cure for Progeria than for pediatric cancer, but I think they are totally worth it!

Or of course, "Help US Live!"

SAVE THE DATE

2012-01-14T10:35:00.000-05:00

Who: Fighting for their Future/Progeria Research Foundation.

Where: MacGerks Pub and Grill, Fort Washington PA Click here for directions.

What: MacGerks is donating 10% of your check to The Progeria

Research Foundation when you mention you are there for the fundraiser.

When: Saturday, February 18, 2012 beginning at 4pm.

Level of Difficulty: Easy! All you have to do is take a break from cooking and enjoy waiter/waitress service. MacGerks is a family friendly restaurant so no babysitter required.

Reward: Enjoy a delicious dinner (and perhaps a drink) and help us get one step closer to finding a cure for our sons.

Post-Holiday!

2012-01-02T19:47:00.000-05:00

It is Monday night and we are gearing up for Tuesday's return to school and work. We hope you all had a wonderful holiday with family and friends. We enjoyed our Christmas and loved that both Christmas and New Years Day were Sundays! It gave us a few extra days to kick back in our pajamas and play with our toys. Christmas gifts included lots of American Girl, Spongebob and Cars 2. It was wonderful having Mark home for three and four day weekends. His job is pretty stressful and it has been a while since I have seen him able to relax and play with the kids. They ran around the house chasing each other and played lots of Wii games. I love to hear the giggling! Anyway we welcomed in 2012 with some friends at our house. We had yummy hot roast pork sandwiches, brownies and did sparklers and poppers on the front lawn at around 11pm.
Looking back, 2011 was a good year for us. I feel like I made a lot of progress emotionally and we certainly have been productive in the area of fundraising all done by some old and new friends (with our fearless leader Michelle at the helm). We are excited to see what 2012 brings us.

Typically we would be going to Boston this month for our six month visit but that will be pushed back due to the new clinical trial and fourth medication that will be added to the regimen. Like I mentioned previously, the researchers have indicated that this medication is less likely to work for our kids then for those with classic Progeria but we are hopeful. In fact it is what we are hanging our hats on these days. There will be no lapse in medications and we will return to Boston when that fourth medication has been approved for the next clinical trial.

In 2012 we are hoping to get closer to a cure for our boys so that they have fulfilled all of their dreams and goals! Thank you for all of your emotional, spiritual and financial help in 2011. We have been fortunate to experience amazing love and generosity from many people in our community and beyond. We thank you for loving our kids, embracing our family and Fighting for their Future.

99% revisited

2011-12-30T22:55:00.002-05:00

I had a friend over the other day. She has a son who is one year younger than Nathan and also has special needs. We have this in common as well as both being Ebay and Amazon sellers. We are both Christians and we both struggle with being parents of special needs kids. There are other things that separate us but one of the big things is that her son's disorder is not progressive. He has had surgeries and still has some limitations in mobility but is only improving. This is a HUGE difference obviously but there is much common ground for us.
We were discussing our house and how little room we have on the first floor. Our steps are steep and Bennett cannot go up and down the steps. Nathan is able to go up and down but I believe he could slip and fall at anytime. (Mark and I have each almost fallen down the steps) Our discussion was around modifications in the home and how difficult they are for us as parents because we are not "supposed" to need them for our kids. My friend has been over several times and with the sweetest of intentions does not really understand why Nathan and Bennett cannot go up and down the steps freely. She has seen Nathan go up and down and believes him to be pretty steady. Her son's physical limitations are different. He falls often but it is rather due to loose muscles than tight muscles as is the case with Nathan and Bennett. Well, seeing is believing because as Nathan was kneeling on a chair putting chicken fries on a tray...crash! He fell completely off the chair, screaming and crying. When they fall, they fall hard. It does not happen every day but rather once a week. One week it was leaving for school and he fell out the door, onto the concrete walkway. Another week it was while spinning around in the kitchen when he fell and hit his forehead on the door frame and suffered a huge black and blue knot. Of course when his teachers asked him what happened, he couldn't remember but that is typical Nathan.

Anyway, my point is (yes, there is a point) that 99% of the time Nathan and Bennett are fine but it is that 1% of the time makes me crazy. It happens just as we settle in and trust them to do more independently. It keeps us (mainly me) hovering nearby instead of letting them go on their own. It keeps me closing gates at the top of steps even though Nathan is six years old. One slip and it might be skull fracture # who knows how many! And it makes me cringe when they walk down the back steps to the car. It makes it tough to find a balance between independence and safety. Seeing is believing and my friend was finally able to see that when they do fall, there is a good chance they are going to get hurt. I felt bad because she felt bad that she had minimized the risk but she did nothing wrong. It is a difficult thing to understand unless you are around Nathan and Bennett.

Part of me would love a one floor home so we did not have to worry about this but we love our house and it is kind of a scary time to try to sell. An addition with a bedroom for the boys does not seem like a viable option as we would be separated from them which I am not crazy about. We could have the stairs reconstructed to make a landing so they are not as steep but that would require a whole lot of construction and reconfiguration of the downstairs as well as cut into our already limited space. I like this option but it may end up being more expensive then an addition. We could call Extreme Home Makeover and have them redo our house but did I mention we love our house? We could hope that a cure is discovered and they get better instead of worse. That way as they get older and taller and their bones are not as fragile, they could scamper up and down the steps with ease and without a "spotter." (And really, what am I going to do at the bottom of the steps spotting him, except keep telling him to focus on what he is doing.) So far that sounds like the best option!!

Nathan's school picture is great but it also is a reminder to me that we have to find a cure for this disorder. We have to stop the progression so that I can get my boy back. I cannot lose him in his teens, early twenties or thirties. Even forties are not enough for me. I need to be able to tell this little boy that he will grow up, go to college, get married and have a family of his own. He is my son and he is awesome!

Libby

2011-12-28T17:42:00.000-05:00

As I'm sure you all know by now I try very hard to make sure Libby feels special. I really miss the time we used to spend before and after school while the boys were still at school at UCP. We try to do things together still but really there is nothing like that built in hour or two every day like we used to have when I could give her the one on one attention. She is a kid who really needs that. Plus she is now sharing a room with her brothers (whole different story) and is on the top bunk so I no longer am able to rest with her. This is when I got a lot of information and questions from her.

Anyway, I know I am a phanatic (oops subconscious spelling mistake) when making sure that all three of the kids are treated as similarly as possible. So much so that I am sure it drives some people crazy. I have made obvious corrections in front of people and redirected people's attention to make sure they include Libby and vice versa. If I think about from her perspective, it makes sense. We have shirts for the boys, events for the boys, a post office box that we check for the boys, people asking how they are doing and more. Even though we know that saving their lives is of the utmost importance, the fact that Fighting for their Future is all about fundraising for the boys must make Libby feel a bit left out sometimes. When we were planning our Make A Wish trip, I drove the poor workers nuts making sure that Libby was included in everything. Ironically, when the brochure came it was addressed to Mark, Phyllis, Nathan and Bennett. Anyway, people may think that I go overboard with this, that life is unfair and the sooner she learns this the better but so far no one has objected. Some of the special attention that Nathan and Bennett receive is built in, therapists, team meetings, fundraising and more so I will work as hard as I can to find a balance for Libby.

One of the things that makes me very happy is that my mom and Libby have a very special relationship. They are two peas in a pod with the things they say and do sometimes. Plus they both love horses and Libby gets to go to MeMaw's house for a few days in the summer to go to Aunt Sherri's pony camp. As I mentioned previously, my parents came down on Sunday and brought the kids some Christmas gifts. They gave Libby a hooded sweatshirt from my sister and brother-in-law's horse farm, "Brownhill Stables" Libby was beyond thrilled and has worn it two days this week (tried to go for three but I said we had to wash it). When she was taking it off on day two she said "I guess I am special or something because Memaw and Poppop gave me this sweatshirt." Ohh happy day! I really want her to know how special and wonderful she is but sometimes I think we miss the mark. I'm glad though that my mom manages to make her feel special and I feel so fortunate that they have a special relationship and both enjoy the horses and being outdoors. Horses and the outdoors are not my thing.

PS If Mark and I tried to get her to wear a hooded sweatshirt, it would not happen. She has major sensory issues so the fact that she can wear a something with the hood sitting on the back of her neck is testimony to how much she loves Memaw and Aunt Sherri!

One of the things

2011-12-23T11:06:00.000-05:00

One of the things that really bothers me is that our boys have taken on the Progeria look. Yes, they are cute but I hate that they have the look of a disorder rather than of themselves. They look like all the other kids with progeria. I don't know how to explain this any better. It is a very strange thing. I hate that two of our three kids don't look like they are "supposed" to look. I know that I talk alot about them not looking like us and how much I want that so badly but the truth is if we had three adopted children who didn't look like us but were healthy, I would not be feeling this way. At least I don't think I would. I know that I tend to be an "if only" person but in this case I think I am being realistic in just wanting my kids to be healthy.

24/7 and 99.9%

2011-12-20T20:00:00.000-05:00

I wrote this a few days ago and was not going to post it but changed my mind. I am feeling better. It seems to go in waves. With Christmas around the corner, we are all caught up in the preparations which means lots of typical kid-like moments which are my favorite. On Sunday my parents brought gifts for the kids which included sleds. The kids began using them to lay down and watch television. Then Libby decided it would be a good idea to pretend they were boats and she promptly had them all traveling to exotic places. She has such a great imagination! In the evening the local fire company brought trucks through the neighborhood with Santa riding on one. We ran out to see him and wave and Bennett was so excited!

We also celebrated Bennett's third birthday with minimal fanfare. This is partially because his birthday's close proximity to Christmas and partially because he is the third child. He got lots of Cars stuff as this is his favorite movie right now. He would watch Cars (the first one) ten times a day if we would let him. One day I could not get the movie to work he began having a meltdown. In despiration I bought the movie on demand for $16 (also a result of being the third child). Anyway, he was pretty excited about his "Happy Birthday" which seemed to last several days with packages from very sweet aunts, uncles and grandparents.

Anyway back to my original blog post which I wrote last week:

As I was walking around Target the other day of course I notice all the little kids in the fronts of carts, boys mostly but girls too. I felt so alone. 99.9% of the world does not understand what we are going through. 99.9% of families have healthy kids. 99% of parents don't have to worry about the things we worry about. We are in such a minority, a minority among minorities. There quite possibly no one else in Target that has a child with special needs and there is most likely no one else in Target that has heard of Progeria. Lately it is the shoes that I have been noticing. In addition to being able to wear crocs and boots, other two year old's have these monstor size feet! My Bennett has teeny tiny feet and has not outgrown a pair of shoes in more than a year. At his age he should be going through several sizes a year.

Every minute I am awake my mind is consumed with sadness about the boys, their condition and their limitations. I have convinced myself that it is because we have a second child with progeria, not just one but two. I am constantly focused on their progeria-like features. Obviously it is my choice to allow myself to wallow like this but I seriously don't know how I even function under the pressure of all these thoughts, of noticing the changes in their appearance every minute.

We have noticed that Nathan has been getting taller. He is able to reach the light switches when he stands on his tippy tippy toes which is awesome! We thought for sure he had gained weight. I have to lift him into the car (yes, my six year old has to be lifted into the car) and I have been thinking that he is surely getting heavier to lift. Well I weighed him and he is not even 31 pounds yet. So he possibly gained 1/2 pound but nothing noticeable. Plus with his height increase, I assume this means he has gotten skinnier.

Its just so strange that there is no one else out there like I us. Sometimes I wish we were a generic family, Joe Schmo family, to be seen on any commercial or magazine page. When there are so many activities going on I forget about progeria. Then something reminds me that they have this horrible disease that is rapidly working against us. My heart aches for me, my husband and my kids, all three of them.

Nathan's handwriting.

2011-11-28T21:09:00.000-05:00

Nathan's handwriting has really improved since the beginning of the school year. With his fine motor skills in question, we were not sure of Nathan's ability to write neatly. One is never sure what is a boy thing and what is a special needs thing. Its always a delicate balance. Nathan copied this from his library book onto his white board! Forgetting to take off his underwear before putting his clean pair on over top? That is all boy! And he didn't even notice he was wearing two pair of underwear all day until this evening when he changed into his pajamas.

Spartan Stroll and other things

2011-11-21T09:52:00.000-05:00

Yesterday our local high school held a fundraiser for PRF in honor of Nathan and Bennett. It was organized by a high school service group and this is their second annual walk. This year they chose PRF after learning about our family through Make A Splash. We were so honored.  It was a beautiful day and lots of people came out for the event. We know that our friends and family are supportive of us and having them come to these types of events is always wonderful. Seeing Libby and Nathan's friends and family begin to attend these events is even more amazing.  Nathan's best friend, R (a girl of course) came with her family and Nathan ran around with them for the entire two hours. R is so sweet and has Nathan wrapped around her finger. One of the best things about raising awareness is that the elephant in the room is no longer. This is especially the case with Libby's friends and her friends parents. It's not like I can introduce myself by saying, "Hi my name is Phyllis and my two sons have Mandibuloacral Dysplasia which is a rare form of progeria....." Despite being below the radar type of people, it is good to have it out in the open. And I am so happy that people support Libby and Nathan by virtue of them being Libby and Nathan and not by virtue of being our children. Does that make sense?

So lots of good things are happening.  Last week my Mom came and was a Mystery Reader for Nathan's class. He was thrilled beyond belief! We had conferences for both Libby and Nathan last week and both kids are doing well. Nathan has some trouble focusing and likes to chat.  We worked out some details regarding getting off the bus, a social group that he was mistakenly enrolled in and finding alternatives for indoor recess. I would think that outdoor recess would be problematic but it turns out the indoor recess is worse. The gym is apparently filled with running screaming kids! Libby's conference was also good. She is quiet and a little on the shy side but participating and meeting all of the academic requirements. Everyday Math curriculum is not her
friend but that is a whole different story.  Bennett is borderline qualifying for early intervention services. He demonstrates the required 25% delay but just barely.

Pictures are from Nathan's classroom when MeMaw Allison came to read!
Despite all of these good things, I have been having a really hard time lately. I have not written much about it because it has all been said before. Looking at previous posts has been therapuetic for me recently. When I have been in the deepest darkest places, I have been able to express my feelings so much better.

I feel like there are some things that I just cannot say. Things that would make me seem like a horrible mother. More than two years after the diagnosis, I cannot believe that from a 25% chance we have two out of two biological children with this rare disorder. I still cannot wrap my brain around that fact. I still cannot wrap my brain around the fact that we will not have little boys and girls and grandchildren that resemble us. I don't know why I am so stuck on that. It seems so superficial and self-centered and but I guess what I have learned is that I am more superficial and self-centered then I care to admit.

I am back to wondering what our boys would look like if they did not have Progeria. I am wondering what they will look like when a cure is found for Progeria. Will they be able to blend in with other adults? What if Progeria is cured but they the unknown long term side effects cause something equally as bad? Many days all I can see is that one tooth of Bennett's glaring at me or Nathan's nose or the lack of hair on both boys. I wish with all my being that Nathan did not need to have an aide in school or that little blue mat under his bum. Part of me thinks that having another child who is typical like Libby would allow some of the hurt to go away. Would it allow me to be happy for others who deliver full term babies and have little boys and girls with rows of neat little teeth and chubby cheeks? I will never know as we are not having another child.  I am hoping this all gets better as we move beyond the baby stage and our friends move beyond the baby stage.

My other ramblings are that Nathan and Bennetts limitations are minor in the grand scheme of things. They can walk and talk, ride the regular bus, go to regular school, but I can't seem to stop focusing on the things they can't do like play sports, get on and off the bus independently, go up and down the steps independently and on and on.  Instead of being happy that Nathan has a friend at school, I secretly wonder if Progeria is dictating his friendships and wish he could be friends with boys as well as girls.

Last kid blues..

2011-11-16T20:02:00.000-05:00

I am going through the last kid blues. I'm sure much of this sadness is normal but part of it is because I really wanted to have a healthy biological baby. Letting go of something so significant and something that many people take for granted is so hard for me. Although I am not a huge fan of the baby stage, watching Bennett grow up {cognitively at least}and knowing it is our last is hard for me. Bennett is almost three years old and we have never before had our youngest be so old! By the time Nathan was two years old, we were getting ready to have Bennett. We are moving forward, out of the baby stage. Yesterday I put a bunch of the baby stuff out for donation pick-up, a high chair, books and toys we have had for nine years...it seems so weird that our family has outgrown them. It doesn't help that this is the month I was due with the very short pregnancy we had in the Spring.

I love that all I need to pack are wipes and a couple diapers. I love that all my kids can walk and talk. I am happy to be done with bottles and baby food and infant car seats but it is also bittersweet.

It's complicated!

2011-11-09T10:14:00.000-05:00

Oh gosh. This is all so complicated. I am always very cautious about putting too much responsibility on Libby. Like I said in previous posts, I am there to put Nathan on the bus and there in the afternoon when he gets off the bus. He is getting a little bit quicker and has even jumped off the last step by himself. Libby usually carries his backpack on the bus but only after she offered to do this for him. When they get home, I meet them at the bus, take his bag from the bus driver and help him down the steps. Libby INSISTED that she could get him off the bus by herself. I fought this for several weeks and Libby reprimanded me everytime I met them at the bus. I had such a hard time letting go but finally I did after talking it through with them, Libby gets the bag and gets off first, take the bag to the curb and help Nathan off the last step. They have been doing fabulous at this which is a great comfort to me. That way if I would happen to be late, I know they can get off the bus safely. So anyway, I digress....

Nathan fell on Saturday night. Right here in our kitchen and while we were sitting right there. He has been so much better about falling and hurting himself but the problem is that if he gets off-balance he wipes out. Of course we were worried and he was screaming. He quickly developed a huge knot on his forehead. Libby started screaming and crying about hating having special needs brothers and no one pays attention to her etc. She used to do this all the time but either she has matured or the boys don't hurt themselves as much. So I went to the living room to talk to Libby and find out what was really wrong. She was crying and saying that she hates having special needs brothers, she wishes she were an only child. I quickly told her that it is okay to wish her brothers didn't have progeria but it is hurtful to say that she wishes they were not here. Then she went on to say that Nathan takes so long to get on the bus and that her friends on the bus say that his fingers look like skeletons. Also, Nathan's aide comes on the bus to help him off and she gets embarrased. And, every time the bus goes over a curb or a bump she has to check and make sure Nathan is okay. Ahhh big sigh by me...its so complicated. I have told her to look out for Nathan but I didn't mean for it to weigh so heavily on her. I just wish she would tell me these things before they build up in her mind. So all this to say that I feel so much pressure to say the right thing to Libby. She is such a thinker and takes things so seriously. I am always trying to imagine how my words and actions are affecting her and what she will be saying in therapy years from now.

**I wrote this last week but wanted to talk to Nathan's aid first before posting. We had conferences this week and I will post on that later!**

Wordless Wednesday

2011-11-02T18:29:00.001-05:00

Bennett's soda!

2011-10-27T09:57:00.002-05:00

My friend Michelle took this picture of Bennett enjoying his first soda at the Sons of Italy meeting. As you can see, he was REALLY into it. His face was priceless when they sat that cup down in front of him! "An open cup with dark bubbly stuff? We are with new people so my mom and dad have to let me drink it? It must be my lucky day!"

Sons of Italy

2011-10-26T10:06:00.000-05:00

I am way behind on my blog. I have sat down many times attempting to write a new post and each time I am stumped about my topic. My initial goal with the blog was to get information out to family and friends as well as express my feelings about our situation. It has been successful beyond belief as I have gotten much emotional relief from knowing that friends and family know what is going on in this crazy head of mine. Normally when I don't blog, I am feeling much better but lately I have been feeling very down. I have not written about it because I have said it all before in many different ways.
The pain of watching Bennett's fingers change and watching him lose his hair is excrutiating. Mark got his hair cut the other day and I'm pretty sure it will be one of his last. I cannot believe we are doing this twice. That is what puts me over the edge some days. Nathan was Nathan and now Bennett is beginning to look more and more like Nathan. Double the pain, double the heartache, double the children that will most likely not grow into adulthood. When I see little boys, I just cannot believe that our boys don't look like that and never will. I have this fantasy that when a cure is found, the boys will return to "normal" but that is obviously just that, a fantasy. They can't look a certain way now and get a medication and have their appearance change completely.

I realize that I am overly focused on their appearance. I guess I am a pretty superficial person or maybe I am realistic and know that appearances dictate many things in life in terms of opportunities. An overweight person or someone who is unattractive has to have twice the personality, twice the singing ability or twice the talent to be successful.

But that is not what this blog post is supposed to be about. Two weeks ago we attended a Sons of Italy meeting in Flourtown. They saw our Make A Splash posters and seeing the name Falcone, they decided to make a generous donation to Fighting For their Future. We were nervous about attending the meeting, especially Libby. She was nervous that it would be a bunch of men kissing her on each side of the cheek and saying Mangia Mangia! I laughed out loud at that which didn't make her too happy.

We had a great time at the meeting!! These people were so warm and funny! A man came over and gave each of the kids a cup full of coca cola and a plate of cookies. Bennett has never had soda and his eyes became as big as saucers! He drank it from the open cup pretty quickly and wanted more. We said no and of course he started crying. Several ladies crowded around "awing", saying we should give him some more. It was 8:00 at night!!

So anyway, we were presented with the check and stayed through the meeting. Their fearless leader admonished the members for not attending some events, reminded them that membership is down and they need new younger members to keep the organization alive. Someone from the National Sons of Italy attended the meeting and informed them of some of the good work they are doing through their generosity. At the end of the meeting, raffle numbers were read but apparently there had been a mix-up with the tickets and no winners spoke up. They gave up and decided to carry the money over for next months 50/50. There was some teasing of the guy at the door who sold the raffle tickets and then they ate. Homemade cream puffs, chocolate chip cookies, tomato pie and hoagies! Mangia Mangia!! It was very late but a great night! We feel so embraced by the people in our community. It took us so long to come out of the closet and now I am wishing we had done it long ago. I'm not sure what I was afraid of. Everyone we meet is wonderful, respectful and amazingly generous!

Libby and her recorder, yayyy third grade recorder class!

Nathan at Linvilla Orchards on Saturday

Libby at Linvilla Orchards on Saturday-her butterfly face painting.

Mountains with the Wiand family!

2011-10-13T14:19:00.002-05:00

Growing up we had a cabin in Slate Run, Lycoming County PA. Almost every friday our parents picked us up at school in the pick-up truck and we made the four hour trek to the cabin. I have lots of memories from those weekends. It sounds cliche but I can still taste the sandwiches we ate on the drive. My mom packed ham and cheese sandwiches on rye bread with mustard and they were stacked in the bread bag and tied with a twistie. I hate mustard and rye bread but with five kids there were no special orders. So we sat in the back of the truck, no seatbelts or safety features. As the youngest I had the favored seat on the wooden tool bench instead of the metal floor of the truck. We spent a lot of time at our cabin, but also spent many nights at our friends hunting cabin. There were many families, kegs of beer and old country music on the eight track player. Everyone was happy (I guess that was the beer) and the kids had so much fun running around with sparklers! I do remember knowing enough to be scared when they started the fireworks display after having numerous aforementioned beer. And these were real fireworks, purchased down south by one of the guys who drove truck. Every once in a while a large spark would settle on the roof and one of the guys would be forced to climb out an upstairs window to extinguish it. Anyway, it is a wonder we survived those days but all this to tell you that the area holds some nostalgia for the Allison girls. Our fondest childhood memories are of Slate Run where our parents were relaxed and happy, away from the stress of running their business. Our cabin was eventually sold but we are fortunate enough to be able to use the other family's cabin.

My sister Jodi and her family go every October because they live an hour and a half away from the cabin. We could probably go alone but we are not that organized and it would not be nearly as much fun. Each year they ask someone to go with them and this is understandably a coveted invite. We have gone a couple times in the past but we admittedly tugged at their hearts just a little this year. When I had my miscarriage I told Jodi the only positive was that I could go to the mountains in the fall if invited. We also showed them a picture Libby had done in school. The assignment was "Favorite Family Tradition" and Libby drew a picture of the mountains complete with deer and trees writing that her favorite tradition was going to the mountains with her 'cusins'!

Of course we had a great time and it went much too quickly. Libby, Mark and the rest of the crew went on a six mile bike ride on Saturday. I stayed back with Nathan and Bennett. Its hard knowing that two years ago Libby did that bike ride and she was six. Nathan is six and isn't even really riding a two wheeler with training wheels. In the afternoon we went on a hike. My sister Jodi warned us that the walk was a little treacherous in places and she was right. There were places in which you had to put one foot in front of the other on a ledge. I wish I had pictures of how narrow the ledge was at places or the areas in which we had to jump from one rock to another but during those parts of the trail I was trying to stay upright. I had purchased a small, cheap backpack for Bennett. He seemed to like it and feel secure. It was a little scary for me to watch Mark trying to maintain his balance on slippery rocks and pine needles with our youngest child strapped to his back but they survived. My brother in law Joel carried Nathan for much of the walk which was very sweet. On the way out, Nathan said he wanted to walk the whole way. Uncle Joel very nicely helped him walk as much as he could even though it was a slow go. Libby of course did fine. I am so proud of us for being so adventorous with two special needs kiddos. And I'm proud of Libby for doing a six mile bike ride without complaining and for riding in the back of the pick up truck even though she was afraid. Of course during the walk I thought that we may be crossing that fine line between adventorous and insane.

This is an easier part of the hike!

I hate how my mind always goes to being sad at what the boys cannot do. I do not know why I cannot focus on what they can do instead of their limitations. I know it is getting less and less but I hate that I let a wondeful weekend be marred by these thoughts. I try to be more positive, I really do. Anyway, It was a lot of fun! It is awesome to see my kids playing with their cousins and I am so grateful that we get to see them so often despite them living several hours away.

Mark took lots of pictures with his phone so if/when he figures out how to download them I will post some of them too!

Bennett talking

2011-10-04T18:48:00.001-05:00

Plugging along

2011-10-03T13:51:00.000-05:00

We are here and we are okay. Honestly there has not been too much exciting to share with you all. Nathan seems to be doing well in kindergarten. We had one incident in which he was super constipated at school, screaming in pain and I had to bring him home. He was really sad because he was buying lunch that day but he did not feel well. It is difficult to regulate his constipation. He and Bennett both have miralax in their pediasure each morning, but if they don't drink it then we have problems. We are planning to be more strict about having them finish it before they do anything else, ie playing or watching television. I hope this does not happen too often because I do not want him to miss out on school. Plus there are enough things separating him from his peers that I do not want him spending time in the bathroom and having other kids become fearful of the screaming. Its a horrible thing when it happens but here at home I can comfort him. At school there is a limit to what they can do for him.

We have settled into a routine of getting on and off the bus. Nathan is getting much faster. It takes much more planning though because we have to make sure we are not late to get out there in the morning. Nathan cannot run to the bus stop. In the afternoons I have to be sure to be out there in plenty of time to get him off the bus as he cannot get down the last step independently. (I cannot run to the bus either-if I did, it wouldn't be pretty) The only time it gets tricky is if Bennett is still sleeping because the bus stop is about three houses up the street. I can see the house but I don't like to leave him in here alone. The other downside that I did not anticipate with Nathan entering Kindergarten is the alone time I had with Libby. Three days a week we would have almost an hour before school and an hour after school to spend time together. I must say that I really, genuinely miss that time. We are going to try to find other time during the week to spend together but it is just not quite the same as that built in time.

I have been pretty happy lately, sadness comes when I see the changes in Bennett but I am generally content. I think fundraising has really helped me feel like I am doing something for them. Of course there are days when it is frustrating to know that the fundraising will be an ongoing process. I look at other fundraisers entitled, 10th Annual Golf Outing for so and so and I cringe. We will not be having a 10th Annual Make A Splash to benefit Nathan and Bennett. We don't have ten years to work with here. I'm thinking less then Five Annual MAS for Nathan and Bennett so then it can be Make a Splash for some other genetic disorder that needs increased awareness and funding. So my new motto is "A Cure in Four."

School

2011-09-21T15:57:00.000-05:00

I volunteered at Nathan's school today and survived. Those kids are so darn cute! Nathan appeared to play by himself a lot but it is the beginning of the school year and a lot of the kids seemed to be playing alone. The thing that struck me is how different he looks from his peers. When we are at home I often forget just how different Progeria makes him appear. I see the veins, the pointy nose, the hair loss etc. but I forget how a typical six year old looks. Nathan is really not too much smaller than his peers, definitely smaller but not as much as I expected. I suspect that will change and become more noticeable as he gets older. But he just looks so so different.

He had two "incidents" today. One when a friend accidentaly hit him in the eye. His aid took him to the nurses office but I think he really was fine. The second was a fall on the playground. According to Nathan he was running to see his friend L (from UCP) and he crashed into someone. Off to the nurses office again for a bandaid for his hand and some ice for his knee. He is fine with just a little brushburn on his hand. It is so hard because we are trying to reassure staff that he is typical in so many ways. They will most likely stay closer to him which is not necessarily great either. I'm glad they did not panic and call me for either incident. They dealt with it and when they realized these incidences were not major, they sent him back to class. I guess it will be a learning process as they determine his abilities, situations with the potential for falling and situations which he is fine to be left alone.

I left school today more hopeful then ever for a cure for our boys. I need Nathan to get better so he can participate fully in gym class, recess and playground activities!

Speaking of finding a cure....our calendars, "When I Grow Up" are now for sale on the Progeria Research Website. This is a 12 month 2012 calendar featuring pictures drawn by children of what they want to be when they grow up. They are awesome! They are $15 each and all proceeds go directly to the Progeria Research Foundation. If you wish to purchase a calendar you can do so directly to me or a member of our team or you can go to the website to purchase one. We do not have a check out on our website so at this time we are unable to sell through www.nathanandbennett.org but here is the link for the calendars.

Volunteering

2011-09-21T08:20:00.000-05:00

I am leaving to volunteer in Nathan's kindergarten class for the first time. Yes, Mrs. S-I'm running a few minutes late! I'm nervous and I'm not sure what I am worried will happen. I guess I am worried that I will see Nathan playing by himself or have kids ask me questions for which I am not prepared to answer. By the time everyone reads this hopefully I will be finished and be comforted by seeing Nathan among his kindergarten peers.

Second day of school.

2011-09-18T14:45:00.000-05:00

Libby and Nathan on the second day of school-not quite as rainy!

Of course Bennett has to wear his backpack out, rightside up or upside down, it doesn't matter!

Early Intervention apparently has Mark's name as Bennett. I love it! I'm hoping its a premonition of what the future holds for Bennett!

Kindergarten

2011-09-14T22:12:00.000-05:00

So Nathan has been doing well in kindergarten. There have been several bumps along the way, especially with the bus. The first two days of school, Nathan had a half day. The third day school was closed because of flooding in our area. So on Friday, he had his first full day.

Our first bump in the road was figuring out how to tell the kids in his class about his condition. First there was talk of pulling him out of class and telling the rest of the class about his condition, asking if they had any questions etc. For some reason I felt like this would separate him further from his peers and I advocated for talking to the class with him present. His teacher said that they did talk to the class, with Nathan present and it went fine. Of course I didn't find out about this until the teacher told me several days later. Nathan tells us very little about school although his beaming face says things are going well.

Our second bump was also minor, tweeking the letter to all kindergarten parents. Nathan's teacher helped me to change some wording so that it made more sense and it went out on Monday. I have gotten several very sweet emails from parents.

Our third bump has been with the bus. We got Nathan a wheelie backpack thinking that would be the easiest for him but he tries to wheel it up and down the bus steps. This obviously didn't work and a little boy at the bus stop offered to carry it on for him (his mother actually volunteered him).

On Friday, I got a call from the school psychologist saying that they had a meeting about ongoing safety concerns for Nathan. Ongoing? It's the third day of school!! Anyway, she said that they were concerned about Nathan's safety on the bus and would like to try using a safety belt. They are concerned that if the bus driver has to stop suddenly, Nathan would go flying.  The only other option she said was the "short bus." Of course I began crying and babbling about how difficult it is that there is so much focus on his safety, Yes, I want him to be safe but..... She didn't really get it and said that "it is not like we are sending him home with the seatbelt this afternoon." Well, he came home on the school bus with the seatbelt on. It took him longer to take it off and get out of his seat and Libby was upset because no one else has a seatbelt on the bus.

So last night I took the kids to the bus depot to meet the supervisor of the bus depot, Mr. J. Mr. J was super nice and we discussed lots of different things.  Nathan practiced going up and down the bus steps. Libby is going to carry his bag and the driver will let them sit together (they separate K&1st from 3rd-5th). I suggested that Nathan get off the bus last. The bus driver was telling all the kids to wait until Nathan got off but I think it was making Nathan nervous trying to get out of the seat while there was a line forming. So this morning he got off and on the bus much quicker and I am a much happier Mommy! The bus driver is a big imposing gentleman. Libby is afraid of him but he is so so sweet. He continually tells Nathan not to rush. He told Mr. J that he loves Nathan and thinks he is a great kid! It made my heart swell with pride!

Mr. J made a comment that I (referring to me as his mother) am used to the diagnosis but it is the school's first experience with this condition. Yes, we are know more about progeria than the people at school but no, we do not know what we are doing. Everything is difficult and painful for me as a mother. Having school staff being worried about his safety, having an aid, knowing the staff is having meetings regarding him and him alone; we are thrilled with all the precautions that the school is putting in place. We are thrilled with his team but we are not happy with the fact that he requires a team. We would prefer not to have an IEP, an aide, special activities for gym class and recess. We would love if he could bounce up the bus steps like other Kindergarteners. So if we seem uspet when the talk turns to the "short bus" it is not because we are against it or don't think he needs it, its just that we are constantly accepting that our son is not like the other kids.

The first few pictures are from the bus run the week before kindergarten began. The others are from the first day of school; however, they are not so great. It was rainy and we were busy getting a neighbor to look at Bennett's head to make sure his cut was healing properly.

Make A Splash

2011-09-12T19:35:00.000-05:00

Make A Splash was a huuuuge success!! I don't know how to thank each and every person who helped plan and run the event as well as each and every person who came! Seeing the faces of the people who took the time to come yesterday was amazing! I cannot thank you enough for supporting our family in this way. I hope that it was fun for everyone and I hope you all come back next year! I know it is about fundraising but I wanted to do something that families enjoyed attending and at the same time, some money was raised for PRF. I was amazed at the support we received from our community, family, friends and church family! Thank you! We had a great time and were very thankful that it did not rain. The gray skies had me very worried but the sun eventually came out which made me feel much better!

Check out the great pictures taken by one of our hard working members of Team Nathan and Bennett: Make A Splash 2011 Early estimates put us at about $16,000, all of which goes directly to the Progeria Research Foundation for ongoing research that WILL lead to a cure. When they have perfected a cure for Progeria, we will continue to hold Make A Splash to raise money for other causes. Am I right Ladies?

A big thank you to Michelle K who organized the whole thing, put up with me throughout and has more energy than anyone I know! Hopefully she will be willing to delegate more next year because this year she did it all!!

End of summer

2011-09-05T21:54:00.001-05:00

I cannot believe the summer is over. Tomorrow Nathan starts Kindergarten and Libby begins third grade! The summer went quickly and was really a great one! We had so much fun, from our trip to Boston in June to a recent visit from cousins with lots of fun things in between. We went to several Phillies games, Great Adeventure, took walks in the neighborhood, went Miniature golfing, Taylor Swift concert, a wonderful vacation with two of my sisters and their families and most recently several of those same cousins hunkered down with us for Hurricane Irene. Normally I am excited to get back into the swing of things and send the kids back to school. Of course I will be happy to have some time to complete a thought but this year there is a twinge of sadness. It was so nice to not to have to rush them around in the morning and stay up late.

Last weekend, my sister Jodi and her family came down for a Phillies game. Nathan was supposed to have his birthday party on Saturday night but we cancelled it because of the hurricane. Fortunately Jodi and her family agreed to brave the storm with us and stay over for another night. We had such a great time eating and playing games. It was wonderful to have a house full of people!! My sister Donna also visited and Libby and her cousin Claudia got to have a sleep over. They were so good and are really growing up!

Wednesday we had Nathan's first bus run. He did fine riding the bus by himself and then we visited his classroom. He is all ready and has his wheeled backpack filled with supplies. I am so nervous!! Less then twelve hours until my Nathan enters the mainstream classroom for the first time since he was two years old! Five minutes before he got on the bus on Wednesday I wrote a letter to the bus driver explaining Nathan's special needs. When I had spoken to the bus depot supervisor he told me to talk directly with the bus driver. I felt like a letter was better so that it could be shared with anyone who is driving the bus. Fortunately the first two days are half days but I wish I could be a fly on the wall. It should be interesting! I also wrote a letter that will be distributed to all kindergarten parents explaining his condition.

Bennett fell at school on Thursday and has a nice cut above his eye. It is bigger then the one Nathan got a few months ago but was clean and so it only required some durabond at the emergency room. These kids are going to give me a heart attack!

We are getting ready for Make A Splash. I am so excited! I know it is primarily a fundraiser but I am more excited just to have a whole bunch of people together who care about our kids. As I said in the previous blog, this fundraising has forced me to put myself out there more. We even had our first article published in the Springfield Sun this week! I actually have begun to enjoy talking with people about the boys. I got so used to avoiding conversations and people due to the risk of bumping my open wounds. I am hopeful that with more publicity, people will begin to treat our kids normally. When we were at Nathan's school on Wednesday several people came up to him and knew who he was from the posters around town. It was a very strange feeling but I keep reminding myself it is for the greater good.

Sorry this is all over the place. We have so much going on right now and all good stuff!! Here are some pictures!

Nathan's backpack and lunchbag.....pricey but it was difficult finding one that fit his requirements. It had to be wheelie and the lunchbag had to attach to the outside of the bag like Libby's!

Libby's backpack

Bennett and his cousin Ginny!

Bennett and Nathan sharing a seat at the Phillies game! Two for the price of one!

And another change...Bennett is talking up a storm! It is a riot! I know that he is a bit behind his peers but whenever they start talking, it is just awesome! He chats away, asks us questions and makes observations! I cannot think of anything specific but it is so darn cute! Yesterday he was not so cute getting ready for church. He wanted to wear his sandals and threw himself on the floor, banging his fists in frustration! "I want sandals, no sneakers!" It was a little funny.

I'll let you all know how it goes tomorrow!

Bus Ride

2011-08-29T21:49:00.000-05:00

Today was the visit to the bus depot for Kindergarteners. My sister was in town so she watched the other two kids and I was able to take Nathan alone. I was expecting that he would climb up and down the bus steps (or try at least). But to my surprise they took us for a ride too and quite a long one through the district! So when it came time for Nathan to get up on the bus, he climbed up all four steps without assistance! It will be different with his backpack but he did it! I was so proud of him. On the way off the bus, he went down three steps and needed a hand on the fourth.

After getting on the bus we picked a seat and......I cried. I thought it would be different with the second child going to school but that is not the case, at least for me. They all look so little sitting in the seats. Its such a monumental occasion for any child and parent.

Typical childhood moments like these are so bittersweet for me. I am so in love with this little boy in his baseball hat and skinny little legs. My mind then jumps to the realization that I am okay with all of this, his difference in appearance, developmental delays and small stature. I am thrilled that he can do what other kids his age are doing regardless of the help or modifications he needs. I breathe a sigh of relief believing that some acceptance has occurred, because its not so bad right? But then in the back of my mind I remember that part about the "shortened lifespan" which is just a nice way of saying he is going to die at a young age. That I cannot wrap my brain around. I love him so much I could just squeeze him. I cannot express in words how much I want him to grow big and strong, get better and have fewer limitations. I find him perfectly adorable and loveable and my heart aches for him and the things in his life that are to come. He is perfect in every way if his body would just cooperate and allow him to grow and fullfill all of his dreams. We have to find a cure for children with Progeria which is why 'being out their and not loving it' is totally worth it.

Out There And NOT Lovin It!! (long-sorry, skim if you must)

2011-08-14T14:44:00.003-05:00

Okay, if you got that the title is a reference to Seinfeld yayy for you! As I have said before, Mark and I are super low profile people. We strive to not draw attention to ourselves. We don't like to ask for help. Its not that we are antisocial its simply that we don't like inconveniencing others and don't like being the center of attention. I must admit I grumble when I have to walk up front for communion at church because I feel like all eyes are on me and what if I drop my bread in the "wine" or trip on my way up or my skirt is unknowlingly stuck up in my underwear.  I have improved in this area.  At conferences I am able to walk up front if there are no seats in the back but I'm still lacking the assertiveness to tell the woman/man behind the deli counter that I want my ham sliced a little bit thicker.

So to say that we are stepping out of our comfort zone is an understatement. Talking to people about Make A Splash, asking for donations, sending repeated messages to people on facebook goes against every fiber of my being. But every fiber of my being wants my boys to get better so bring it on!! Well, not exactly "Bring it on." I'm not quite that enthusiastic.   The irony of it all is too much sometimes. This is a girl that didn't want to have a wedding because I didn't want to be the center of attention and now I am sitting down for interviews with newspaper people. More on that at another time.

So today was not a good day for me. Nathan and I went to church and then the grocery store. I really was enjoying being with Nathan. I love being with my kids one on one when they are not competing for attention. So in the grocery store, we were having a good old time. Normally I go to a grocery store about twenty minutes away but I have been trying to stay local so that when people see signs for Make a Splash, they recognize our boys and want to come to the event. At the checkout we are talking to the clerk and the guy selling pretzels for another worthy cause. The lady behind us in the checkout line comes up to Nathan and kneels to talk to him, like you would a two or three year old! There is nothing wrong with this but it is a symptom of his size. People tend to treat him as if he were much younger-even us sometimes.  Then she says to me, "Does he have Progeria?" Wow!! Yes he and his brother have it, we are having a fundraiser yada yada. Truly I don't even know what I said but I know I had tears in my eyes. For the last few hours I have been trying to figure out why. I know he has Progeria. I know he looks like he has Progeria. Maybe its because she didn't ask his name or anything else about him. Its all about Progeria.   I don't think she was out of line in what she said but I don't know why it upset me so much.  Is it possible that I am still in denial as to how different he appears? I guess I am. I guess I try to forget about it and enjoy Nathan for Nathan. Somehow I haven't been able to mesh the two, enjoying my kids, knowing what it means for them to have Progeria and working for a cure all at the same time. And yes, I guess its about being out there and not loving it. I prefer to blend in. As a child it was super important to blend in and be like everyone else.  Maybe I am not self-actualized because I still want to blend in and I assume my kids want to blend in. For them that will never happen.

Don't judge us...

2011-08-13T13:45:00.000-05:00

In addition to the Nintendo DS we got Nathan a water gun. He had to test it out this morning and I thought it was pretty cute! Mark took a turn too but I didn't get a picture of him. Actually Mark also took a couple of turns with Nathan's DS already too!

Happy Birthday Nathan!

2011-08-13T13:33:00.000-05:00

Yesterday was Nathan's sixth birthday! We had a great evening. We took the train down to the city and went miniature golfing in Franklin Square. It was really fun! We gave him a Nintendo DS and we gave it to him while we were on the train. He was really excited. It wasn't something he had asked for until about a day before his birthday. We decided to get it for him because Libby has one and Nathan doesn't get to play it too often.
I will post some pictures of Nathan on his birthday but today I am not feeling it. Maybe it is the idea of another milestone, now six years old with age spots on his arms and neck, running out of time. Many other moms who have children with special needs talk about how their kids are perfect in every way, down to the things that have occured as a result of the condition. I don't see it that way. I want them to be bigger, stronger and be able to pull a golf ball out of the hole on the miniature golf course without getting down on their hands and knees. I hate Progeria and what it has done to our family. I often wonder what they would look like if they had not been born with Progeria. Would they look like Mark or me? Would they be tall? How it has taken away their opportunities to be rough and tough boys, playing baseball and soccer. Do they play with the girls because they like too or because the boys play to rough and are playing different things? What would their interests be? What could they potentially be in life? And the most difficult for me, the fact that they most likely will not have biological children if any at all.

I know it is not healthy to "what if" but sometimes I cannot help but allow those thoughts in. I don't do it about anything else in my life. We have been through so much, infertility, prematurity, niccu and miscarriage.  Any one of those things, never having a full-term birth experience, is traumatic and painful.  But all of those we can move past, but this we cannot move past. At least I cannot move past it. It is ongoing, it is lifelong. Yes, it is what it is a big IT.

I continue to struggle to understand how other mothers of special needs children can be so positive. Is it because their children's disorder is not progressive? Most of them do not have children with progressive fatal disorders but some of them do have children with a fatal disorder. How can they say that they would not change anything about their child's condition? Its not as if my child has brown hair when I was expecting blonde, or having a boy if you were told you were having a girl or even adoption versus biological. I love Libby just the way she is. I wish she would not have to experience the pain of dealing with adoption issues but I do not wish for her to be different in any way. I love everything about her and how she came to us. I do not wonder how she would be different were she born to us. It is not a thought that ever crossed my mind and in fact it seems weird to even say it now.  I feel a bit ostracized from the special needs community through my own doing.  People rarely want to discuss the pain and hurt that comes from situations like this.  I guess talking about it does not make it go away but it does make me feel not so alone on the rare occasions that I do hear someone talk about the downsides of special needs parenting.

Yes I love my kids and yes I love them the way they are, but I also wish they did not have progeria. I'm not sure if this makes me a bad mom or not. I guess it affects my parenting so its probably not the best.  But how can I fight to cure progeria if I do not hate what it has done to our kids.

Sorry this is so random and confusing.  I am simply trying to make sense of all that goes on in my head.

Dr. Gordon

2011-08-10T21:03:00.002-05:00

Someone commented on a recent post and left a link to this video of Leslie Gordon talking about Progeria and the research that has been accomplished in the last eleven years. This is a short video and worth watching (my biased opinion of course). Keep in mind that she began The Progeria Research Foundation after her young son was diagnosed. Thank you to the reader who shared this link.

Boys Will Be Boys

2011-08-10T09:13:00.000-05:00

Nathan and Bennett are proof that boys have a genetic predispotion to be rough and tumble. I truly believe it is not a learned behavior. If it were up to me our boys would sit in their chairs watching television, possibly wearing helmets just to be safe! Obviously this is not the case. I would prefer they be big, rough and tumble boys but given their physical condition, twiggy legs and fragility, I would prefer they not take too many risks, but they have other ideas. They run and slam into each other, roll around on the floor and bonk each other over the head with random objects. They are no where near as rough as typical boys due to their physical limitations but still too rough for my liking. So after umpteen times of telling them to stop running around screaming, Mark had to separate them and put them in time out this morning.

Don't forget to purchase your tickets for Make A Splash at http://nathanandbennett.ticketleap.com/make-a-splash-for-nathan-and-bennett/

Taylor Swift!!!!

2011-08-07T14:21:00.001-05:00

A very sweet, fairly new friend surprised us with tickets to see Taylor Swift last night!! Nathan was so excited to say the least. In the car ride there, he asked Libby three times if his hair looked alright.

We were up very high! Libby was afraid and freaking out. Nathan trudged up the stairs slowly but steadily and made it to the top of the stadium all by himself. (I think I had to take more breaks then he did). While waiting patiently for Taylor Swift to take the stage, Libby was able to calm herself down. We were so proud of her. So when Taylor Swift came on, they were both ready!

It was an awesome concert!! Libby was doubtful because TS is Nathan's favorite singer and not hers but once again she was pleasantly surprised! She even admitted that she likes Taylor Swift and that she is a better singer than Big Time Rush! Wow!! It drizzled a tiny bit before the concert started and at one point she said, "Look at the sky Mommy. I think God just decided to make everything perfect tonight." Yes he did Libby! It is truly heavenly to see your children happy. Nathan was grinning from ear to ear and Libby was relaxed and happy like I rarely see her. She even "danced" a little bit (in between talking nearly nonstop)

Nathan held his hands in the Taylor Swift heart shape for most of the concert! We had such a great time as a family (minus Bennett), laughing and joking around. I realized that our friend had given us so much in giving us tickets to see Taylor Swift. She gave us a break from Progeria and special needs. Of course it creeps in, at least for me when people stare at Nathan, but those times of laughing together are precious. It serves to refuel the tank so to speak and give me energy to go forward. It made me think of all the ways that the people in our lives help us directly and indirectly to raise our children. Whether it be listening to me vent, praying for us, fundraising for us or sending us to see Taylor Swift, you are helping us to share this burden of Progeria. So thank you to everyone who supports in so many different ways. We could not do it without you. Thank you Katie for a wonderful evening and thank you Aunt Andrea for watching Bennett so that we could go see Nathan's girlfriend!

My lack of blogging.

2011-08-07T11:21:00.000-05:00

I've been trying to think about why I have not been blogging as much this month. I concluded that it is for several reasons. One of the main reasons is just being busy with life. Between Boston, vacation, fundraising, working, selling online yada yada there are so many little details to get done each day. Secondly we are on the cusp of many things right now, each of which could be an entire blog post. We are working on our Make A Splash event and the When I Grow Up calendar which is requiring me to do little things like checking our PO box, dropping off letters, picking up donations here and there and emailing. Each one prompts more questions from Libby about the reason for fundraising and I find myself trying to creatively explain things to her without creating more anxiety for her. Then I wonder if we are creating the anxiety in Libby by not telling her exactly the full truth. She is looking for reassurance and I try to give it to her but it is a false reassurance really. We cannot reassure our kids of anything but in our case this is especially true. I know it is a process and I cannot satisfy her questions with one or two conversations. I am happy to take each opportunity, regardless of where we are to explain as much as I can tell her but leaving out the part where we are looking for a cure that will allow her brothers to live past high school. I feel as if we are on the edge of this breaking wide open. Libby is perceptive and constantly has her "feelers" out. She is hypervigilent to the extreme. She seems to be picking up on the fact that our explanaition of Progeria is not consistent with the amount of effort we are putting into fundraising and the attention we get from people about the boys (ie praying for the boys). She does not "really get Fighting For Their Future."

Just yesterday she said she hopes that Bennett's face does not change like Nathan's. I'm not sure if she overheard me saying that to someone or if she came up with that on her own. Another example of her perceptiveness happened last week in Target. Someone was staring at Nathan and I turned to meet their gaze, to tell them to stop staring. Libby picked up on it right away and asked why I was looking at the woman. I denied it but soon fessed up and explained. I figured it was an opportunity to see if Libby notices that people stare at Nathan. She said she does notice but I'm not sure if she does or was just wanted to agree with me.

Self-portrait

2011-08-01T07:35:00.000-05:00

Me and Libby waiting for her therapy appointment and having our lollipops. We need to help Libby get this anxiety under control and she needs someone to talk to other than me and Mark. She has been seeing Miss B on and off for almost a year now. Ms B is an art therapist which is perfect for Libby. She was previously in therapy and complained and whined about going and talking to someone. With Ms. B she enjoys the time. We had not been there in a while because our insurance changed and Ms. B does not accept our new insurance. Right before her appointment, Libby said she had changed her mind and did not want to see Ms. B. I never want to force her into therapy because then she will get nothing out of it and she will be resentful and resistant of therapy long-term so I was a bit confused and hesitant. After much discussion, she said that xx amount of dollars was too much to spend on her for therapy and she felt bad. She overheard me talking to Mark on my cell phone. Libby can be a handful but she is very sweet not to mention perceptive. It was a good reminder for me that she hears and processes everything!

Beach Vacation

2011-07-30T23:34:00.000-05:00

I wrote this earlier in the week but have not gotten around to adding the pictures.

We had an awesome beach vacation this year! Last year we forgot a bunch of the food we had packed, the house we rented was dirty and then I wound up in the hospital. Needless to say it was not the greatest vacation. I really appreciated being healthy this vacation and still don't think I realized just how sick I was last year. Two of my sisters and their families went to Ocean City Maryland and we follwed them renting a condo in the same building (We were invited, honest!) Anyway, it was so much fun being with my sisters, brother-in-laws and nieces and nephews. Libby and her cousin Claudia (who is also 8 years old) had such a great time playing together. That was one of the big draws for us to vacation together. There is nothing better than kids playing with cousins and since we live far apart from each other, we like to take any opportunity to get them together.

Nathan, Libby and Bennett love my sisters two girls, Margaret and Ginny. The girls put in lots of time with the kids, playing in the sand, taking them down to the water and carrying them (Yes, another big draw!). Nathan is absolutely enamored especially with Margaret. She ranks right up there with Taylor Swift! One of the funniest things Nathan said this week was when we were in our condo between activities. Nathan asked "when will we be wherever Margaret is?" Regardless of what he was doing, he wants to be with Margaret!

Nathan in the water. He loved it and spent much more time there then we expected. He has problems watching his surroundings and expects people to get out of his way so several people did knock him over! They would help him back up, he would look annoyed and confused and then get back to whatever it was he was doing.

Bennett was not so sure about the water....or the sand. He seems to have some sensory issues and screamed when we sat him in the sand or water. He hates being messy but I'm not sure then why he sticks food in his ears and down his shirt at mealtimes!

Some boardwalk ice cream!!!

Nathan and my neice Allison. Nathan was great on the beach even though he did not like the sand. He sat eating, reading or playing with his magna doodle.

<>We actually had such a great time at the beach that none of us wanted to return home. I guess that is an indication of a good vacation. It was so nice to be able to relax and not have to be anywhere at a certain time; to not see all the things in the house that need to be done and to be with family. I had one bad day emotionally. I think just seeing my two year old niece hop around so effortlessly is hard for me. I tend to forget how limited our boys are, seeing how they struggle just to get in and out of a chair or off the floor and the aches and pains that Nathan has and shouldn't have at age five

Margaret and her fan club!

Fortunately some fabulous news awaited us when we got home! A friend was able to get tickets for our family to go see Taylor Swift when she comes to Philadelphia next month! We are so excited for Nathan! We told Libby first because I knew she would have a hard time with this. I assured her that we did not seek out tickets for Nathan's favorite singer and that we will look into getting tickets for her favorite band. After some tears she was really good about it and helped us break the news to Nathan. Nathan had suspected something was up and got his goofy "in love" smile on his face. He hopes she sings "You Belong with Me."

Weighty Issues

2011-07-13T20:31:00.000-05:00

If you know Libby at all you know that she lives with the weight of the world on her shoulders. We noticed anxiety in her long before we learned the word Progeria. At the age of ten months she began shaking and crying at a birthday party when the candles were lit. Over the course of the next several years we have discovered and conquered many different fears. Many things along the way have added to this stress and anxiety for her, the most significant being her brother's diagnosis and the death of her Meemaw Falcone. In the two years since Bennett and Nathan's diagnosis I have been in denial about the affect that it has had on Libby. (I need to write a whole different blog about that.)

She is confused about many things and these past few weeks we have had some pretty heavy discussions. I am realizing that many of her behaviors are from that confusion.  Recently it has been adoption issues and her brothers. She is struggling to understand why her birthmother chose adoption for her and I am struggling to provide answers. "She was a teenager and wasn't ready to be a mom" is no longer satisfying her curiosity. When I choose my words I feel so much pressure to say the "right" thing wondering how her eight year old mind will process this all.

With all of this Libby has begun having physical symptoms of anxiety. They began the day that Meemaw Falcone passed away six months ago. The more and more fundraising we do, the more I have to explain Progeria to Libby. But of course I am still holding back.  I feel like I am keeping a big secret from her because she cannot handle the truth right now and I'm not sure when she will be able to. I feel a tremendous weight on my shoulders, partially because of the responsibility of helping her process adoption and Progeria and partially the guilt of not being able to be completely honest with her right now. This week I told her that Progeria means that Nathan and Bennett have a lot of symptoms similar to people who are aging.  As soon as it was out of my mouth I knew that I had said too much.

Yesterday we talked about some of her physical symptoms of anxiety and she was looking for reassurance that she was not having a heart attack.  We reviewed her clean bill of health, an echocardigram that she had at one time and the fact that only people who are older have heart attacks.  She quickly spun around and said, "but Nathan and Bennett won't have a heart attack right?" Oh my gosh this is all so much. She has so much on her little shoulders. Then she remembered that Meemaw Falcone passed away as a result of heart problems. I just pray that we are able to guide her through all of what life has thrown at her. I know she will not be unscathed but I hope that she will be stronger as a result.

A couple more points from Boston

2011-07-05T20:29:00.001-05:00

I forgot a couple more points about our trip...

Bennett is now swallowing pills! He does not have quite as strong of a gag reflex as Nathan so he is able to have us put the medicine in his mouth, drink water and swallow the pill. Obviously he does not really get what he is doing. I think much of pill swallowing is psychological so I assume we are starting this before that becomes an issue. I'm curious if he will go through a phase in which it becomes more difficult but this is huge for us! It means no more mixing medication, which means we are not being exposed to the medication, thus eliminating the need for masks and gloves! Like I said, this is HUGE!
One of the things that got to me this trip is that after 2 years of knowing this diagnosis we still don't really understand it. When I say "we" I mean us as parents. Yes we know the boys have a mutation in the zmpste gene and that children with classic progeria have a mutation in the lmna gene. Yes we know that the result is the same so the treatment would be the same but we still do not truly understand the science behind it all. It is so complicated and beyond our scope of comprehension. It is understandable. If it were simple, we would have a cure but it is still frustrating as parents. I feel like after two years the doctors are still trying to explain this to us and speaking for myself, I am still not truly getting it. I feel a little dumb not being able to grasp this after so long and so many explanations.
And the big news of our trip is that there is a new medication that the boys will eventually be getting. This news was not public until last week. Dr. G says that children with non-classic progeria are less likely to benefit from this medication {because our boys do not have a build-up of progerin like the children who have classic progeria}. My response to this was 'That's fine! I like those odds!!' We were told that our chance of getting pregnant was less than 4% and we got pregnant not twice but three times. Unbeknownst, with each pregnancy we had a 25% chance of having a child with progeria and both of our boys have progeria. So I am hopeful about this medication.

I have more updates but have not had time to update in a week! Nathan graduated from preschool! Everything went well although he was disappointed that he didn't get to wear a uniform (cap and gown). He wore a sash and check out this smile!

Lots of the kids that graduated have special needs and it was so neat to see how far they have come physically and emotionally in the several years Nathan has been at UCP. When I sat there and realized how hard those special kids, their teachers, therapists and families worked it brought tears to my eyes. Off to Kindergarten!! Yayyy Nathan!!

Childrens Museum of Boston

2011-06-28T22:44:00.001-05:00

Last Thursday we had plans to take advantage of some free passes and go to Great Adventure/Six Flags New England. Well the weather was not so cooperative. We decided to go instead to the Childrens Museum of Boston. I always feel like we could go to a children's museum here in Philadelphia but there were not many other indoor options. We grumbled to ourselves about spending money for admission on what was supposed to be a free to low cost day. We were skeptical but boy were we wrong!! We stayed for five hours at this awesome museum! Yes, there is a Childrens Museum in every city but we never take the time to go and especially not all five of us! My pictures are not so great because they were taken with my phone. This is Bennett on the screen at the beginning of the visit. He stood there for more than ten minutes and we could not convince him to move around. He seemed a bit overwhelmed. The little girl in this video was so cute. She was trying repeatedly to get Bennett to move around but to no avail.

Libby of course had a great time climbing and doing just about everything. There was a bubble room she liked as well as information about animals which is always something she enjoys.

This was an awesome room with tons of different activities exploring golf balls and physics. They had ramps of every shape and size and spirals and more. That is Libby up at the top getting ready to drop the golf ball down the channel. They also had a magnetic wall where the kids could experiment and move PVC pipes around. Honestly the kids could have spent all day in that room!

This is one of the play structures in the Construction Room. The sign said 5 and up. When Nathan began to climb, I stopped him and then changed my mind. He climbed up by himself and walked the whole way across the moving bridge and down the other side. I was so proud of him! It took him a very long time but he did it! He has become so much stronger and confident in the past year!

On the second floor there was a room for kids ages three and under. It took Bennett a little bit of time to warm up but he loved this area! Mark took the big kids to some other areas and I enjoyed sitting there watching him play for an hour or more. He often gets stuck sitting in the stroller while his big sister and big brother get to do things so it was awesome that there was a room full of things that were just his size. He especially liked the trains.

Bennett and Nathan can do most of what other children their age can do but it takes them a lot longer. A typical two year old would hop right up there but for Bennett it took a lot of effort and thought. Normally I help him so don't think I'm a horrible parent. I also noticed at the beginning of the video that someone turned around to take a second look at Nathan. Happens all the time but gets a little tiring.

2011-06-27T19:46:00.002-05:00

The Pool

2011-06-27T18:17:00.001-05:00

I don't know why going to the pool puts me in such a funk. I just got back from my first trip this summer. All those little bodies running around with healthy skin...it puts me in such a bad place. I want to go to the pool for my kids because they love it but I am beginning to have buyers remorse this summer. It is not even the other kids looking at him them that bothers me there. Even though they do. It is more the longing for my boys to be healthy. I long for them to flourish and grow like other kids to have that same smooth even skin with no veins showing and no bony knees. I know that my kids have a lot, they are able to walk and talk and express themselves. They are intelligent and affectionate but that skin and hair always reminds me what is going on within their bodies. I know I take for granted what they can do and I'm sure there are parents that long to be able to tell their child "it's quiet time" or "don't run" or "don't back talk." But I long to take all three of my kids for haircuts, have their skin tone even out and have them gain weight. I don't know where I am going with this post. I know it is a lot of rambling but I just needed to talk. Again I don't quite understand why the pool is so much more difficult then other venues. I guess because it is the place where skin is in and the contrast between my boys and healthy kids is so physically apparent. I want more than anything for my boys to be healthy. I do not want to miss out on life wishing for that but I do not want to stop fighting for it either. I know that God is capable of healing Bennett and Nathan but I do not know if He will choose to do so. I do know that He wants us to pray for what we want regardless. So on days like this I pray for a cure so that our boys can live long healthy lives.

Mickey Mouse sunglasses

2011-06-26T21:24:00.005-05:00

I have more to share about the conclusion of our Boston trip including some cute pictures but I will get back to that. For now I wanted to say thank you to those who purchased or had friends purchase sunglasses for Nathan at Disney World. We received several pair but are using them all. We are able to have two pair in the car and two pair in the house so that we are never caught on a sunny day without sunglasses. Today Libby even decided it was sunny enough for her put them on (she thinks Mickey Mouse is a baby show) Anyway I wanted to thank the people who got them for the boys. They love them and they are small enough that they stay on their faces. Like I said in my previous post, the sunglasses are a necessity due to their sensitivity to the light but the Mickey Mouse part just makes them fun. So thank you so much to those who went to the trouble to make telephone calls to friends and to those who searched for them at Disney World. These smiling faces (and their parents) really appreciate it.

Wrapping Up

2011-06-22T12:03:00.014-05:00

We are wrapping things up in Boston today. Yesterday after the infusions, we had a chance to talk to Dr. Gordon which is always enjoyable. She has such a unique perspective as a doctor, scientist and mother of a child with Progeria. The results of the first study (First trial was Lonafarnib only and our boys were not part of that trial.) are not yet published but according to Dr. G this will be happening in the very near future. Although she cannot give us any specific information regarding the results of the first study, the fact that they are continuing to administer the Lonafarnib to all the children in the study is a positive sign. Dr. G seems very happy with the results. So my mind is of course racing with thoughts of all this stuff. Here is a bullet list of some of my thoughts and things we learned. They are in bullet form because they are so random and cannot be organized into any semblance of order. This is my brain, constantly-no semblance of order-lol.

Both boys received inserts for their shoes. They had molds cast of their feet so that the inserts could be fit to them perfectly. These inserts provide cushion for the bottoms of their feet as they do not have enough fat to keep the bone in their foot from pounding down through the bottom of the feet. It also fills up the gaps in their shoes as their feet are so narrow.

I am pretty sure that we will not have any more children. Its a case of my two year old self wants what I want, a healthy baby, but my brain has to step in and say that this is not what is best for our family.

I know I have mentioned several times about the embryos we have in storage. Although we are not having more children, we have not disposed of them because of the outside chance that we would change our minds or that they could be used to provide medical treatment for Bennett and Nathan. Every time we get the bill, I feel guilty-like we are wasting money on something that will not happen. Dr. Gordon was able to tell us definitively to hang onto them as one day they may be beneficial. It is a big relief to have a clear cut answer and we will not feel guilty when the bill comes.

I'm disappointed that the boys stayed virtually the same in height and weight. Anytime we said anything like that about the boys, the doctors nod and say, "That is typical of kids with Progeria." For the first time we don't want to be typical, not typical of Progeria anyway. And because the manifestation of symptoms in classic Progeria are a bit worse, they are not the least bit alarmed by the symptoms in our boys.

Cutting Bennett's gums will most likely not cause his teeth to come down any faster. It is not a problem with the gums, but simply the teeth being slow to come down in children with Progeria.

We asked about the second trial results and how they would be written, would there be a second section for children with non-classic Progeria. Dr. G said that it will all be together, but after the main study is published we will be provided with additional information about the children involved in the study that have non-classic progeria. Of course no one in the study has the same mutation as our boys. This is where the major worry begins. What if these medications are working for children with classic progeria but not our boys? What if any treatment in the future works better for kids with classic progeria and not our kids? PRF is not looking for a cure for our boys, they are looking for a cure for children with classic progeria. Yes it is closely related but obviously the most subtle differences can make a big impact in symptoms and treatment. All these things are spinning around in my head. We are wondering if we are putting all of our eggs in the wrong basket but technically the only other basket was Dr. Garg and he was far from any type of treatment. So, we know we are the right place but thinking about all these things can make a person crazy-at least it makes me crazy! 99% of the time we know we are doing the right thing for our kids but 1% of the time you start to question ourselves.

So today is our last day at the hospital. We finished at around 3:00 and our plan was to do the kids version of the Freedom Trail. Well it started raining so Mark took the big kids to the movies to see Mr. Popper's Penguins while Bennett naps. It was beautiful for the last two days and we were planning to do the tour this afternoon and Great Adventure tomorrow. It looks like it is supposed to rain tomorrow too so we might go to the Children's Museum of Boston. We are staying at the Devon Nicole House tonight, a hotel in Springfield Mass tomorrow night and then homeward bound on Friday.

Mickey and Nathan

2011-06-21T10:53:00.004-05:00

He has only grown less then a centimeter but the pictures look good. I tried to keep Mickey the same size in each picture. My but is that I wonder how much a taller a typical child would appear in pictures such as these. We have to celebrate the small gains though. Right now the boys are getting their infusions of zoledronate. The nurses have been so nice about answering all of Libby's questions. When the nurse explained how the medication goes through the tubing into the iv, Libby said, "so that their special needs get better....which for Bennett it seems to be working because he is really strong! " So sweet.

Day One in Boston

2011-06-20T09:46:00.005-05:00

We are done with appointments for today. The day was easy physically but always tough for me emotionally. The boys have not gained any weight in the last six months and Nathan has not gained weight in the last year. Nathan weighed 28.8 pounds today and actually weighed more back in January. Bennett weighed 19.58 pounds today which is up less then a pound in the last six months. Nathan and Bennett continue to change in so many physical ways but not in the ways they are "supposed" to be changing.

I was giving myself a hard time this morning when the "weigh-in" put me in a funk. Why is this getting to me? I know it is part of Progeria? It's not a surprise, I knew that they are not outgrowing clothing! So I tried to think about why I cannot get over this seemingly trivial matter. Why such strong emotions tied to not gaining weight? So I backtrack to emotions that accompany when your child does gain weight(Libby and for the first few months of Nathan's life). Remember that feeling of walking out of the pediatrician's office and knowing that your baby gained a pound or two since the last visit. I would proudly call Mark followed by either my Mom, my sisters, friends or all of the above. The pride was in the fact that we were feeding, nurturing and providing an environment for our little one to blossom and grow. It is the confirmation of what we secretly already knew, that our children are superstars! So with that much emotion pinned on weight gain and growth, it is understandable that the opposite would trigger the opposite emotions and feelings. Its just a struggle to repeatedly pick onself up from those emotions (at least it is for me.)

There is so much encouraging and positive research that is happening right now thanks to PRF and the NIH (I "heart" Francis Collins). I have such hope for the future for those diagnosed with this disorder and I am so grateful for the opportunity to participate in these clinical trials. As a mother all the research in the world does not mean anything until my boys start gaining weight and filling out their clothes. I hope that having a "but" does not make me sound ungrateful and negative. I am just a mom who is anxious to have my children's health restored!

Hoping for a better day!

2011-06-19T22:51:00.004-05:00

Tonight has been one of the worst nights for us. I'm being dramatic because there is nothing seriously wrong. It took us eight hours to get up here to Boston because of traffic around New York but getting here was the least of our problems. We arrived at 10pm to the Devon Nicole House which is the place we always stay. It is a great place, a Ronald McDonald type house. This is our fourth stay here and Libby's second. We have always been given the same room but this time it is a different room. It is actually bigger than the one we have always had but that did not suit Libby. She is "creeped out" because she is not used to it and on and on. Then they did not have a cot and instead have a blow up mattress for them which caused even more hysteria. For the last two hours Libby has been screaming crying and throwing fits about where she is sleeping, being completely irrational. We have tried everything short of giving her our bed and have done it all in a (mostly) calm manner but to no avail. It is now 12:15 and there is some hope in sight but still a very discouraging night for us. Getting three kids to sleep in one room is never easy but this has truly been the worst ever. I dread seeing the other guests tomorrow because I am truly embarrassed because of the crying from all three of our kids.

So here is hoping for a better day tomorrow at the hospital. It is technically later today so I better get to sleep! Everyone should be in great moods tomorrow (I mean today)!!

Kindergarten

2011-06-13T21:05:00.002-05:00

So nothing really terrible happened at kindergarten orientation over a week ago. It just made me sad. It started before we even got into the building. Walking across the parking lot I was carrying Bennett and Nathan was walking beside me. His peers were skipping and running along and when they saw him they did a once over look, looked at me, looked back at Nathan and then walked a little bit closer to their parents. This happened repeatedly throughout the hour which felt more like three hours. Everyone was delightful. The teachers and staff were so kind and welcoming. We met the woman who will be his aid in the classroom. Someone offered us the key to the elevator (we declined.) In the hallway a family from Libby’s softball game shouted “Nathan, Nathan” which was so nice and someone said they knew Nathan from the neighborhood water ice store.

So everything went well but in the deepest places of my heart and soul I wish that Nathan’s appearance matched his inside five year old self. As I watched the other five year olds jump up and down on the steps of the stage, run through the halls and roughhouse with each other I have never wanted something so deeply. It is difficult for me to describe because it was not a ‘feel sorry for myself’ depressive, hopeless kind of feeling. It was more of an aching sadness for Nathan and for what he does not yet fully understand. And the overwhelming part is knowing that we will have the same experience in three years with Bennett. Just more reminders that this is not merely a bump in the road, a “this too shall pass” but this is our life. This is how we send our kids to school, with Aids, IEP's, curious stares and sympathetic smiles. These types of milestones are no longer fun, carefree events in our lives.

And the milestone of kindergarten is also an indication that time is moving forward. Time is passing and we need a cure for our boys.

Daddy's boy

2011-06-09T14:15:00.003-05:00

Bennett is quite attached to his Daddy. He cared for Bennett a lot in the months preceding and following the diagnosis two years ago. When I pick up Bennett from the church nursery he is happy but quickly cranes his neck to look for "Daddy." When I leave him at home with Mark he says, "Bye Mommy" but when Mark leaves he cries. It is really cute how attached he is to his Daddy. Last night Mark took Libby to her final softball game of the season and I stayed home with the boys because of the heat (and we have lots of gnats for some reason this year). Poor Bennett got his sneakers out to go with them. He proceeded to cry for almost a half hour, carrying around his shoes and crying "Daddy." Nathan and I tried ice cream, books and hugs but were unable to console him. Finally we were able to distract him by playing several rounds of Hullabaloo!

Here is a very fuzzy picture of him I took with my cell phone. I had to text Mark and show him what he was missing!

Animoto

2011-06-08T13:25:00.002-05:00

So last night as I was trying to create a slideshow I discovered Animoto! Here is my first. Some of the captions are at the wrong points but oh well.

Phillies!! {warning-many exclamation points}

2011-06-07T20:11:00.004-05:00

As many of you have heard by now, we had a great night at the Phillies game last night! A friend of a friend, Kate Sheilds, contacted someone she knew at the Phillies and and our family was invited to attend a Phillies game and go on the field for batting practice prior to the game. First of all, it was a beautiful night weather-wise. We arrived at 5pm and the kids were given some gifts, hats for the big kids and a plush Phillie Phanatic for Bennett. Then it was off to the field. We saw several of the players take batting practice, Victorino, Utley and Howard. It was amazing to be on the field, behind home plate and see these figures that you see on television, walking around in front of you! It sounds so silly but the green of the field, red of the clay and the bright uniform colors still take my breath away.

Sorry they are out of order. I spent a lot of time trying to find a free site to create a slide show without people having to go to another site. I finally figured it out and didn't have the energy to reorder them.

Our One Tooth Wonder!

2011-06-01T17:21:00.009-05:00

Bennett brought the pretzel jug to me the other night with a cup saying "pretzels please cup." I was downloading ebay pictures at the time so I had my camera right next to me.

Bennett still only has that one tooth. It does not seem to hold him back to much and bothers me more than him. Mark took him and Nathan to the dentist. He offered and insisted because he knows that these kinds of appointments often bring me down. Yes, I am a very lucky girl in the husband department! Although I sent along some books for him to have Nathan learn to read (Bob Books) while they waited. Instead Nathan informed me that they played the video games that are in the waiting room and only read a couple of pages of one book!

Anyway, his teeth are indeed under there but the dentist said his gums are very thick. If more of his teeth have not erupted in the next six months, they may consider cutting the gums. I could not find anything on the internet that describes this procedure or gives it a name.

Bennett is becoming quite the little boy. He is talking a lot, saying lots of phrases such as "need help please-stuck" or "Daddy come here." He also sings some version of his ABC's but will do none of this on demand. He is quite affectionate and has to hug each of his teachers before he leaves school. He also reportedly kissed another little girl in his class on the lips! Yikes! I am really enjoying Bennett. Two is definitely one of my favorite ages.

I also forgot that I took Bennett for an ear recheck last week. The ENT at CHOP recommended that we come back in three months to see if Bennett still had fluid in his ears and if so, they would consider tubes. Instead of waiting several hours at CHOP, I opted to go to see our regular pediatrician. Dr. L said his ears looked pretty clear but since he has a cold, he wants to see him back in one month to make sure it is resolved. So he does not appear to have fluid in his ears any longer but does have some junk in there from the cold. Good News!

Friday is Nathan's kindergarten orientation for which I am very nervous. I will be taking him (and Bennett in tow) to tour the classrooms, meet some teachers and the principal. I'm not sure what I am so anxious about. I guess other children asking about Nathan or other parents avoiding me because my kid is different. Every parent wants their child to fit in, not stand out and be accepted by their peers.

Happy

2011-05-24T14:10:00.023-05:00

I wasn't sure what to title this post but wanted to write when I am happy since I usually only write when I am feeling down. I have been very happy and content lately. Whenever the burden of Progeria is not weighing heavy on my heart, I try to determine the reason for the change my perspective. Here are my thoughts. We are moving forward so quickly with the fundraising which is so exciting. There are so many people working so hard for our boys and other children with Progeria. I received the annual report from Progeria Research Foundation yesterday and their tagline "Together We Will Find A Cure" has reinvigorated me. We are so fortunate to be included in the clinical trial and any other trials in the future.

One of the things that I enjoy most in life is spending time as a family doing normal things. Yesterday Mark took the day off to take the boys to the dentist {whole different story}. In the afternoon Libby had Color Day {formerly known as Field Day} and we all went over to the school. Having Mark off from work and spending time with him was really fun. His job is so stressful and between that and dealing with the kids we spend most of time talking who is taking what kids to what appointment, making telephone calls or completing paperwork. Being at Color Day with my husband and three kids, cheering and socializing with other parents....that is what I signed up for! These are the things in life that I love!

I have said in the past that I often feel like we are in a bubble right now that is safe for everyone. The boys don't really understand yet that they are different and Libby does not have to know the prognosis for her brothers. I talked to her the other day and told her that soon people will be asking her why her brothers look the way they do. I asked her what she planned to say. She did not know so I told her she could tell them that Nathan and Bennett have Progeria. She did not think that was a good idea, suggesting instead that she tell people they have special needs. Her reasoning was that if her peers then looked up what the boys had and then told her things that scared her. What a cutie! So I told her that was perfectly fine. It reminded me that this process of coming out of the bubble is happening and its not as bad as the anticipation of it all. Then at Color Day some boys were staring at Nathan and Bennett and whispering. It did not hurt as much as I thought! Our boys look different, but they are the same as every other kid. My boys may not be able to do tug of war but there are lots of other ways they can participate in Color Day.

Lately I have been able to focus on enjoying one day at a time rather than worrying about the future. One of the things that has helped me came about in an unusual way. Libby has been having a lot of anxiety regarding The Rapture. On Friday she came home from school, crying because the kids on the bus told her that the world was ending on Saturday. We had a rough weekend and poor Libby had physical symptoms of anxiety, racing heartbeat, shaking etc. Even though Saturday has passed, she is still concerned. In trying to help her with her anxiety I explained that if you want a flower to grow big and strong, you give it lots of attention in the way of water, plant food and sun. Anxiety works the same way. If you give your worry lots of attention in the way of thinking about it and talking about it, the worry will grow! Well it did not help Libby too much but this elementary concept seemed to work for me. When feel sad at pulling out a pair of 2T shorts for Nathan {for the third year in a row} I am able to push that thought aside. Plus I put Bennett in school for a few hours on Mondays and Wednesdays with Nathan. Having some time to get things done makes me a happy girl! Well off to a Poetry Lunch at Libby's school, Ear Check-up for Bennett, Kindergarten Parent Orientation and Softball Game tonight! Busy Busy!

Kindergarten revisited

2011-05-19T11:42:00.005-05:00

Last night Libby had a program at her school. It was actually in her classroom. We love love love her teacher who she has had for two years now {teacher moved up to teach 2nd grade}. To say that we are grateful is an understatement. Libby adores her {verging on worship} and having the same teacher while moving to a new physical building was huge for her. She has much more confidence and has made so much progress emotionally and academically. Libby becomes so nervous in new situations that she is virtually paralyzed. Her physical appearance changes, her shoulders go up and she looks like she is in fight or flight mode. Needless to say it is difficult to concentrate when you are in that mode and in kindergarten and first grade she really struggled academically.

She had a short sentence to read last night and was really nervous, crying the night before because she is "not a good reader and can't do fluency in front of people." She did fine and was so proud to show off her classroom and friends to us. For months the class has been working on a documentary about the bald eagle which was awesome! It was fifteen minutes and very imformative! Libby's teacher is so great and allows the kids to learn in so many different creative ways. I am nervous for next year. Hopeful that this extra year with Mrs. D gave her the confidence she needed to carry her through to third grade.

Incidentally, we believe that her anxiety is the reason she does not want to participate in sports. For soccer at age four, she stood in the middle of the field, looking completely self-conscious for the entire season. She finally had contact with the ball during the last game of the season which we chalked up as success! After a year of not doing any activities, this Spring we signed her up for softball which is going pretty well. {She did get reprimanded for cleaning off the base but I was actually really excited that she noticed it was dirty} We really want to encourage her to do some sports or other activities; not because she is the only one in our family who is capable of engaging in sports. If she does not want to do them that is fine but we do not want it to be due to anxiety. We do not want her to be in high school or older and regret not getting past this so that she could participate fully in life. I know that she may not be a public speaker one day but we want to give her plenty of chances to practice and get past the anxiety if possible.

And since it is always about the boys, my heart was very happy last night for another reason. One of Libby's friends has a younger brother who will be starting kindergarten in the fall too. He and Nathan have never met but little kids do not seem to need that to play together. J and Nathan wound up playing with some kind of magnetic toy on the floor for most of the time. It was so awesome and was really encouraging for me. There were no issues with Progeria, IEP's etc. In fact I'm not even sure if they looked at each other! It was just two little boys playing with a toy they both enjoyed. I was overjoyed to be reminded that Nathan is much more than his special needs. Not to say there won't be issues but like Mark said, we will probably have more trouble with it than Nathan.

Kindergarten IEP

2011-05-14T19:58:00.004-05:00

So we have now had three meetings for Nathan for kindergarten. The first one I attended with Bennett several months ago. It was a preliminary meeting for his IEP and they asked many questions about the services that Nathan currently receives and what needs I anticipated for him in Kindergarten. I really did not know what his needs will be until he gets there. In part because he has never been in a completely typical classroom and in part because I have never been in the physical building. {Very long story involving restructuring in our district} So I did not have much to contribute and just kept saying that they needed to meet Nathan to really know what his needs will be. After obtaining paperwork from Nathan's teacher, PT and OT at his current school, IEP team went out to visit him for evaluations. The second meeting Mark attended and they discussed the actual IEP. They determined that Nathan will have an aide at all times in the classroom and will have someone to help him off the bus in the morning and on the bus in the afternoon.

Last week the third IEP meeting was held {and I think the final}. In attendance was myself, Nathan's teacher for next year, the school nurse, OT, PT, school psychologist, a coordinator, school counselor and me {and three kids}. It is amazing to have a room full of people who are ensuring that our son is going to get what he needs in kindergarten. Although it goes without saying that I wish he were just a regular kid that could show up for school in September, I'm so grateful that these people are all there and do such a great job. They did so much work for this IEP and took into consideration his seating (a stool since his feet don't reach the floor), leaving early to get on the bus in the afternoon, modified gym class, OT and PT services and more. There will be an aide for Nathan who will assist him and make sure he is safe at all times, especially on the steps and the playground. I would love for him to not need an aide but it is less that I have to worry about regarding safety. Hopefully her role with him will be minimal and he/she will also help with the other kids and not be on top of him.

My other question was what to tell the kids in Nathan's class. As the room fell silent, Nathan's teacher spoke up and said that will be up to us as his parents. The team said that nothing needs to be said; however, his peers will need to told something because they will need to be careful around him. I would rather get it out in the open before everyone starts asking questions {ie. parents} but I'm not sure how to handle it.

I'm just anxious for Kindergarten to start because the anticipation of the unknown is more difficult for me. I know that every parent worries about their kids making friends but Nathan has so much going against him. He wish he could start with a clean slate like his peers. He will not be the easiest to be friends with as his friends will have to get past the fact that he has an aide, he drools when he concentrates, he needs lots of help with things and is quite a bit slower than the others. But when they get past that, Nathan will know that they are truly good friends rather than ones who will change with the weather. It just hurts that this disorder will shape his personality because of the way people will react to him socially and because of his abilities. Occasionally I find myself wondering what Nathan's personality and interests would have been had he not had progeria. These "wonderings" are obviously pointless and detrimental. They happen less and less but getting ready for kindergarten has sparked them for me again.

We're becoming official!

2011-05-06T20:23:00.011-05:00

We are becoming official! We are now on the Progeria Research Foundation website. We had not been invited to be on the homepage until our last visit to Boston. Then we wanted to wait until we got our pictures taken professionally by Carrie Steffe. It feels very good to be official in this way. It's strange how we often don't realize our level of denial though until we take another step towards acceptance. I know that I still am in denial in a lot of ways but this was definitely a big step forward. I'm not sure that Mark was quite ready for it yet but he agreed {I think he did?} In ideal circumstances we both prefer not to draw attention to ourselves. But at this point we obviously need to step out of our comfort zone in order to pursue fundraising and ultimately a cure for our boys.

Speaking of fundraising... one of my roommates from college, Michelle, has rallied us to begin fundraising. We now have a logo. The tree is intended to represent the tree of life and the swirl is representative of the circle of life. It was important for me that the logo was symbolic and somehow Jerald Gottesman (who donated his time) incorporated both which is pretty amazing! My sister Donna did the Fighting for their Future wording. Note the two i's for each of the boys! I absolutely love the whole thing!

Wordless Wednesday {except captions}

2011-05-04T09:53:00.003-05:00

Nathan put his hat on sideways and I thought he looked like a tough guy!

When I got the camera out to take a picture of Nathan, Libby decided to orchestrate a faux fight picture. I stopped it before anyone got hurt but took a picture first.

Aging

2011-04-29T09:16:00.006-05:00

I'll be humming along enjoying my kids and being happy and this is what always makes me slam on the brakes.

The aging process. These are Nathan's hands and they continue to get worse in my opinion. They appear worse in person than in photos, also my opinion.
Below are Bennetts that just a year ago appeared almost normal. Now they are looking more and more like Nathan's and to say that it breaks my heart does not even touch on the pain it causes.

It is the aging process that is the essence of this disease that causes me the greatest pain. The progression is difficult to watch in our aging parents, as their joints begin to stiffen, it takes them longer to get around and they are unable to do the projects they enjoyed. It is difficult to watch in our 70 year old parents even though it is expected for many years. It is unfathomable to watch at a much more rapid pace in our kids. At the end of aging there is only one thing. Yes, eternal life for those who Believe but to know that it will be the end of their life here on earth..there are no words to describe.

A year ago Bennett had a full head of curls! How fast this aging must be going? How much time do we have?

In a comment on my blog a reader suggested that a recent post was "all about you." Yes, it is all about me. It is all about me feeling sad that my boys will not have a future if things keep up at this pace. It is about me, wondering when this progression will make things like walking up and down the steps {which they haven't even mastered yet} more and more difficult. Wondering if there will be a window in which they will have the strength and mobility to do these things. Daydreaming about one story homes is something I should be thinking about for my parents, not my two and five year olds. I know that I am strong because every day I get up despite these fears and fight through the day. Not always at 100% because yes, I am sad but believe me, it is sadness for my boys and my girl.

Disney anyone?

2011-04-28T18:47:00.002-05:00

If anyone is going to Disney World in the near future, please let us know. Nathan's sunglasses broke and he loves them!! Not only does he love them but sunglasses are a necessity for him and Bennett with their sensitivity to the sunlight. Of course we could get different sunglasses but why not have fun ones. I forget if they were $10 or $20 but we will happily pay for them if someone is there and can pick them up. I have looked online and have not been able to find them. Thanks!

Accidents

2011-04-28T18:16:00.005-05:00

Nathan had an accident at school yesterday. He was running in the classroom and hit his head on a chair. We went to the emergency room and they decided they could dermabond and not do stitches. It was really a very minor incident and could have been much worse. I am so glad there were no broken bones, he missed his eye etc. The emergency room visit was very quick and easy. The one doctor (who happened to look like Charles Manson) asked if I remembered him. "From which time" I asked thinking it was my recent hospital visit with the stomach bug. He remembered Nathan from three years ago when he had a skull fracture.

My kids are so cute and I wish we could have an experience like that without the elephant in the room. Everyone fusses over them and talks to them but meanwhile I'm trying to determine when I am going to make the big announcement. Of course they see that something else is going on besides the bleeding head but telling them of the diagnosis and then wondering if they have ever even heard of the condition. That is one of the things I actually enjoy about being in Boston. I don't have to explain to anyone what they have, what it means and spell Lonafarnib six times.

The other accidents I'm referring to also involve Nathan but it is about toileting accidents. He goes in phases. He'll be good for a while and then have three accidents daily for several days in a row. It is always #2. Sorry for the gross topic, but it is really weighing on me. I am worried about kindergarten. I do not know if it Progeria related or not but I assume it is since he does not seem to know if he had an accident or not. Again, sorry for the graphic details. I have been praying that this is more behavioral than medical/physical. We would appreciate any additional prayers that this will resolve before September.

Cousins

2011-04-20T09:42:00.006-05:00

Last night I fell asleep to the sound of giggling girls. What a wonderful sound! Libby and I are back from visiting my sister in Virginia and my niece came home with us for one night. She is a week older than Libby and they are having such a great time. Libby and I spent three nights down at my sister's house so this was their fourth and last night together. They have really matured in the last year and this visit has shown how much they have grown. They have gotten along so well. It does not hurt that C is a middle child and so she is much more flexible than Libby who is used to being in charge. I am so grateful that they are so close in age and that we have the chance to get them together despite being six hours apart (9 hours if you go by my trip down on Saturday in the rain with construction on 95) And despite the fact that Libby is a tomboy and C is a girly girl, when you are eight you can find lots of common ground! They wanted me to take picturs of them walking casually through the neighborhood so here they are!

And here is my niece who will be two in June. She looks just like Donna and I did when we were babies. I was nervous about being around her but she was so much fun to be around. It does make me sad that Bennett has progeria but it did not keep me from enjoying spending time with her. Saturday we will be seeing the whole family so we will see what trouble A and Bennett can get into together!

Rough Week

2011-04-16T06:34:00.003-05:00

It has been a rough week for me. Surprisingly it has not been about about the miscarriage specifically but more about the grief that it triggered. The one major reason I am sad about the miscarriage was because we were so hopeful for a healthy baby. The chance to have a baby minus the NICU part, minus the physical therapy, early intervention and extended baby stage. Like I said in my last post, I allowed myself to go to the "poor me" place. In terms of clubs, I am now a member of the infertility, prematurity, nicu, special needs, adoption (a good club) and now the miscarriage club. Of course it makes me a much more interesting person but I would prefer to be less interesting. The miscarriage has also brought up the sadness of losing Mark's Mom which was just six months ago. I think part of that is the change of seasons too. Just being in a different part of the year and knowing that another holiday is coming and she is not here. Then I feel sad for Aunt Andrea who lost her Mom. I do not know why all these feelings flood me but they do.

The worst part of the week has been being angry and snapping at the kids. Mark has been working late all week and after losing the weekend because of being in bed both days, I have been overwhelmed but also paralyzed. I have been especially short with the kids and it breaks my heart. The one morning I yelled at Libby to "grow up" after she threw fits for the twentieth time about what she was wearing to school. Her response, "Mom, that is very rude to tell a kid to grow up!" Ughhh yes, she is right. Nathan has a touch of OCD and once he gets a thought in his head, he will not let it go. (His teacher at school can confirm) So after the tenth time he asked me why he was not allowed to watch tv, I snapped at him. I thought I was just being firm but he must have been mean because this is was his response.

Nathan "I am leaving this house!"
stomps into the kitchen

Me: "Where are you going to go?"

Nathan: "I don't know. Somewhere else!"

Me: Don't you think you should take some stuff with you?

Nathan comes back and gets his shoes and his drink and stomps off again. In the kitchen he puts his shoes on and returns to the living room. He opened the door and closed himself between the inside door and the screen door. Minutes later he reappeared.

Nathan: "Are you ready to be good to me?"

It was quite comical but it was also enlightening. It takes a lot to make Nathan mad. He is sensitive and will cry at the drop of a hat but he does not often get mad so I knew I had to change my attitude.

This week has made me sad all over again about the boys. I had a minor respite with the hope of a typical baby with a mouth full of teeth and a full head of hair but this week it has been like seeing the boys for the first time. The visible signs of their condition has cut to the core. And on top of that I miss Peg. I feel like I don't deserve to say that because she was my Mother in Law, not my Mom and I complained about all the Mother in Law type things that she did but I miss her. On a week like this she would have come over at the drop of a hat and spent time with the boys. Nathan and Bennett would have had a reprieve from their grumpy mother and I would have had a cheerful visitor in the ever-optimistic Peg.

So Libby and I are having some girl-time and visitiing Aunt Donna in Virginia for a few days. I am praying that being around my almost 2 year old typcial niece will be okay. It will definitely be more difficult without the hope of being pregnant with a typical baby.

Thank you

2011-04-11T20:56:00.006-05:00

Thank you for all of your thoughts and prayers. I am feeling much better today physically and emotionally. As most of you know our three kids are quite a handful so I've convinced myself that having a fourth would put me over the edge. I really think that our loss was not like those who go through a miscarriage later in the pregnancy or after years of trying. That must be devastating. We had a whole list of cons to fall back on including the biggie, the anxiety of having another child with progeria. I had a small episode of "woe is me" on Sunday. I know there are many many people that experience miscarriages but we have experienced infertility, prematurity x 2, special needs x 2 and now a miscarriage? Really? One would think we could have been spared that one. I started thinking of that old Hee Haw song, "If it weren't for bad luck I'd have no luck at all."But my pity party was short lived because I know we are very lucky in so many ways. As if on cue, the kids were especially cute over the weekend, played together and were really funny at dinner. Bennett is such a ham and at dinner last night he was putting his dirty hands on his head and getting a laugh out of Libby and Nathan. Mark and I tried not to laugh. Nathan started shouting "Bravo, Bravo" and we lost it! It was exactly what we needed at the end of a rough weekend. For me, the weekend was topped off by a bonus Monday of thrift store shopping with my mom and sister. We had so much fun and got lots of good stuff!

Our Mini Emotional Rollercoaster

2011-04-10T10:43:00.010-05:00

So we have been on somewhat of an emotional rollercoaster the past month. I apologize in advance if this post is all over the place and does not make a whole lot of sense. Last month we found out that I was pregnant. It was quite a shock and we found out super early because I was at the hospital for unrelated issues. To say we were in disbelief would be an understatement. It didn't make any sense. After years of infertility and trying for quite a while even with Bennett, how could this happen accidentally? Well we know, but..... How could we afford another baby when we can barely afford the three we have? How would we give all four kids the attention they deserve? What would people think? And of course, what if the baby had Progeria or something different? I cannot fathom being a member of yet another club! Adoption and Progeria are keeping us busy enough. We had gotten rid of all our baby stuff used from Libby through Bennett. I know we could get more but emotionally we had moved beyond the baby stage.

When we were pregnant with Bennett, it was thought that Nathan had Pycnodystosis which they would have been unable to detect with prenatal testing. So I contacted Livia at CHOP to find out if a CVS could detect Mandubuloacral Dysplasia. Out of the kindness of her heart she went about making arrangements with Genzyme Corp {genetic testing} to test for MAD {25% chance and we are 2 for 2} and Progeria {just to be safe} at the 11 week CVS. Shockingly neither are part of the normal prenatal screen. I started feeling very tired, my waist got a little bit bigger and we started getting used to the idea of the complete chaos of having four kids. I bought her an outfit which I had done in anticipation of each our three kids. We started talking about names even though it was really early.

So this weekend, I had a miscarriage. Despite knowing all the reasons that having another child was bad idea, it still feels like a loss. It feels weird to feel sad about losing something that you didn't know you wanted in the first place but at the end of the day how can you not want a baby. Its so exciting to be expecting a baby. Not only has the miscarriage been extremely physically painful but it feels very weird to feel pregnant one day and then the next its gone. This pregnancy was so unexpected and so unlikely that we thought maybe it was a meant to be. Its not like we could possibly pursue having another biological child. Although we discussed it with this pregnancy, I cannot imagine making the decision to terminate a pregnancy due to Progeria or any other genetic disorder. The miscarriage unearthed all those crazy thoughts of testing the embryos we have in storage but that is just not a possibility. So the only way I can make sense of this is that perhaps God is using it to prepare us for something else, something better!

I told Libby what happened, that I did have a baby in my belly but it was no longer. I wanted her to know why I was in bed in physical and emotional pain all day. With all of her anxiety we often try to spare her the details of things like this but I felt like it could be a teachable moment. Mommy and Daddy were a little sad but we would be okay and will be happy again. Here are three little cards she made me throughout the day yesterday when I was in a lot of physical pain. Today I am feeling a little bit better but still cannot do a lot. Today my kids look cuter than ever to me!

I also have to add that that I know that this miscarriage was nothing like many other people go through. I was only 7-8 weeks pregnant and many women have miscarriages at 12 and 13 weeks. For many of those women it was a long anticipated pregnancy and they do not know if they will be able to have children at all. They do not have the list of "cons" to fall back on for comfort. For us it would have simply been a bonus, some icing on the cake!

In the words of Marie Osmond...

2011-04-01T11:49:00.007-05:00

I was watching a repeat of Oprah on Tuesday and Marie Osmond was on talking about the death of her teenage son. Her son committed suicide. She tearfully said that the pain of losing a child does not go away and does not get better. She said that God gives [you] brief respites from the grief but in general it is ongoing. That definitely sums up how I feel about my grief. I often feel like "it is what it is" and I should get over it but what Marie Osmond said is more realistic in my case. Here are a couple pictures of Bennett this morning. I bought this hat on Ebay for Nathan. I saw one on a little boy at work and had to have one for Nathan. I thought it would make him look cooler! So I way overpayed because it was the only one like it I could find on Ebay and it turned out it did not fit Nathan. It is a little too big for Mr. B but cute anyway. He has refused to wear it for a couple of months. He often does this with things like drinking from a sippy cup and then one day, he just decides its okay. Well today was the day!

My Blog and Clinical Trial

2011-03-26T17:44:00.010-05:00

I follow four other blogs written by moms who have or have lost special needs kiddos. These women write eloquent posts about their children and their experiences. Unlike me they rarely complain about the day to day struggles and if they do, they end their posts by tying them up neatly. This is not to say that these blogs are not honest. They are honest but they find the positives and take joy in the little things. Sometimes I struggle with my blog because I wish I could be that inspiring; that each blog should have a beginning, middle and end point rather than just me blubbering on. (Perhaps this is why I only have a handful of followers and get very few comments.) But my original purpose was to find a way to share all the nitty gritty details of what is going on in our lives so that friends and family can understand without me having to repeat the same information. It was a therapeutic way to express my innermost sadness and anxiety. So despite wanting to be eloquent and inspiring, I am going to stick with what works for me regardless of how uninspiring or eloquent.
So that being said (Mark uses that phrase when he is planning to tell me something bad like he is working late.), anyway, that being said I have been struggling lately with the boys. I think it started with my thoughts about the June Boston trip coming up soon. June will be our fourth visit which means that we will be 3/4 of the way through the two year trial. Nathan will be six in August and we have not seen a major transformation. How embarrassing this is but when I found out about the clinical trial I searched for pictures of the other kids with progeria. I was hoping to find before and after pictures with a major transformation in their appearance; no more signs of progeria, no more hair loss and no more visible veins. How naive. When I could not find such evidence, I hoped that the additional medication in this third trial would be the key. Now that we are fourteen months into the treatment, my unrealistic expectations of the treatment are just that, unrealistic. I know that any improvement is good but when it is your kids, it feels like time is running out. I am at the point where I am looking forward to the next clinical trial. I have confidence that the Progeria Research Foundation will continue to fight until a cure is found. I just have to hope that it is not too late for our boys.

PS: I use the word "I" but Mark and I are very much in this together. We are on the same page in terms of our hopes for the future for our family, the difference is that I think about it ad nauseam.

Reynaud Phenomonen

2011-03-19T13:18:00.002-05:00

It was recently determined that Nathan has Reynauds Phenomonen; however, we were told that it was not related to Progeria. Surprise! It is. I actually am not surprised as nothing seems unrelated to progeria in Nathan. Anyway, I found this article which was actually co-authored by Dr. Gordon. I should not have read the whole thing but I did and the part about children with progeria not being able to have children is such a slap in the face for me. Maybe because it is such a huge part of the life cycle that is supposed to be; watching your kids grow up, marry and have kids of their own. Or maybe it is because of my own infertility history but either way it is one of the toughest parts for me. And once again, this is something that we know and our children do not which feels like a rather large burden.

Busy Busy Busy!

2011-03-19T10:23:00.005-05:00

It has been a busy busy month for us. I got very sick twice, once for a week at home and once in the hospital for four days. I am okay but it was not a fun and did not help my already lengthy to do list.

So, last week I took Nathan and Bennett down to CHOP for appts with orthopaedics and ENT. Nathan was scheduled to see the ENT due to my concerns about his open mouth breathing and snoring. The doctor determined that this is due to his narrow nasal passages and being "crusty" He prescribed a nasal solution to help clear out his nose but I sensed that it was simply to pacify me. What I was really hoping was that he would say that his enlarged adenoids & tonsils were interefering with his breathing and should be removed. Although putting your kids through surgery is scary, I had read that kids often gain weight after having adenoids and tonsils removed as they can interefere with eating and appetite if enlarged. Benntt was referred to the ENT due to fluid in his ears. The ENT still saw fluid in there and suggested a recheck in three months. If it is still there, they would consider tubes. That seems crazy for a kid that has had only two or three ear infections in his life. I am hoping to take him to see Dr. L our pediatrician in three months to determine if there is still fluid in there. We waited for two hours to see the ENT so I am in no rush to go down again, wait for two hours in a 4 x 3 room for him to tell me that the fluid is gone.

Ortho was for the bottoms of the boys feet. Nathan has already developed the callous on the bottom of his foot due to the lack of subcutaneous fat so we were there to talk about padding for their shoes. PRF recommended we see a podiatrist, but CHOP doesn't have a podiatrist so they scheduled us with Ortho. Now I feel like I wasted my time (a 1 hr 45 min wait) because I am thinking we need to schedule with a podiatrist. The ortho poo pood Nathan's orthotics and said they are unnecessary. He recommended simply getting custom padding for their and even casually suggested picking up Dr. Scholls padding and cut them down to size. Now remembering back to our Boston trip, I distinctly remember Dr. Miller and Dr. Gordon making a joke that it cannot be regular pharmacy bought Dr. Scholls padding. Of course I didn't remember that at the time. So I'm pretty confused but will try to schedule with a podiatrist sometime soon.

This week it is nephrology on Wednesday. I'm not expecting anything new from that but I'm hoping they don't try to put a bag on Bennett. The last time they tried to do that it leaked everywhere and they never did get a sample. The appt was scheduled for 11:00 down at CHOP but Dr. M's office called to see if I could push it back to 12:00pm. I agreed but said that I needed to be out of there by 2:45pm to get my daughter off the bus. Our most recent appt with the ENT was scheduled at 12:15pm and after waiting for two hours {did I mention it was in the tiny exam room, by myself with two little boys} we just made it home in time for Libby's bus. The woman from Dr. M's said she couldn't guarentee anything because "things come up." Sounds like I'm in for another fun day at CHOP!

On Friday we got our pictures taken again by Carrie Steffe, the photographer we previously used in New Jersey. She graciously donated her services so that we can have nice pictures for our upcoming website and the PRF website. I knew we needed pictures of the boys together but I always hate the separation between the boys and Libby. I explained this to her and asked if she could do different combinations. She was so sweet and took pictures of Libby and Nathan, Libby and Bennett and finally Nathan and Bennett! How awesome is that when she is donating her time!

Last week we also celebrated Libby's 8th birthday! I cannot believe she is eight years old! She is a trip. Her and a couple of friends are dancing to Michael Jackson's Thriller in the talent show so she is all into Michael Jackson. Yesterday we listened to PYT and Billy Jean at least ten times each. Anyway, I am so thankful that her friends asked her to do this. She is not really interested in doing any organized sports and I think the opportunity to do something in front of a crowd is huge! I was so self-conscious in front of groups and crowds as a child {still am} and I really don't want her to be limited by that anxiety. I love love love her so much but I guess that goes without saying.

In a bubble

2011-03-06T17:16:00.003-05:00

Libby came up to me the other day and asked if being adopted is a good thing. We always talk about it at home in a positive and exciting way. I said yes and asked her why she wanted to know. She said that whenever she tells someone she is adopted they say they are sorry. My initial thoughts were 'oh no, here we go!' I often feel like we are in a bubble right now where we don't have to explain too much to the kids. Adoption is all positive with no discussion of loss and separation which is an integral part of the process. The same is true with Progeria. We actually rarely use the word around Libby for fear that someone would give her information before she is ready. Usually we just say that they have special needs, which to kids just means they are a little bit different. We obviously cannot get into the aging process, life expectancy etc. At some point though, all of that will have to be covered with Libby, Nathan and Bennett. I can't imagine when Libby's friends start asking her questions and when the boys start asking about their own illness. I'm not ready for all those questions. We are entering a world where we are much more exposed and often it feels like the calm before the storm. One morning Libby went into the bathroom and said, "hey, what is it that Nathan and Bennett have?" When I answered with progeria, Libby said "Oh because this soap says it washes bacteria away." If it were only that simple!

Kindergarten

2011-03-02T08:49:00.010-05:00

Kindergarten is fast approaching for Nathan and I am getting really anxious. In the spring we went back and forth about sending Nathan to a typical pre-k program. The pros were that I thought Nathan would be happier, smaller class size, more educational programming and being in an environment with all typical kids which will be more like the Kindergarten environment. The cons were taking the boys to two different places and most of all the worry that they would call one day and say they could no longer meet his needs. What would we do then and would I be waiting for that phone call every day? I also second guessed my intentions. Was I doing this for Nathan or just doing it to prove something? When a door closes I tend to want what is on the other side even more. My heart told me to send him to the new school, but my brain told me to keep him at UCP.

So now here we are planning for kindergarten in six months. The first step was a meeting at the district office with the special education team, OT, PT, speech therapist, psychologist, education person and one other person. It was just me and of course I was once again nervous with all those eyes on me asking me what Nathan's needs will be next year. So there was my opportunity to ensure that his needs are met and I basically gave them no information. I was so unprepared. I kept saying that they needed to meet him to really understand. Afterwards I started panicking! He still doesn't drink from an open cup. He still occasionally has toileting accidents. He screams when he poops. He can't be rushed on the steps or he will fall the whole way down. He can't sit crosslegged. He needs lots of space and extra time to get up and down off the floor. He needs to wear sunglasses outside because his eyes are so sensitive. His fingers turn colors when they get cold. He will probably need help in the cafeteria and much much more. So since the meeting in December, I have become more and more nervous about Kindergarten, worrying about all that stuff as well as all the social stuff.

Vintage photo

2011-02-25T17:43:00.006-05:00

I found a picture of me riding my brand new Winnie the Pooh many many years ago. Love those slippers!! Libby said I look like one of my nieces. I don't know why that stings so much but it does. I don't know why I can't let go of having kids that resemble Mark and me. I wonder if parents of adopted children feel that sting or if it is just because we have the Progeria thing on top of it all. One will never know.

Bullying

2011-02-22T22:21:00.007-05:00

I try to volunteer weekly in Libby's classroom. It is difficult to fit it into my schedule but the benefits are many. I get to see Libby with her peers, get to know where she is socially and academically and it is so much fun being with all the second graders. Plus I like to think it shows Libby that she is important enough for me to set aside time to volunteer.

One evening a couple of weeks ago Libby was having a terrible evening. She was much more emotional than usual, snapping at her brothers and crying over trivial things. Finally when I reprimanded her for the umpteenth time she started crying and said she had a horrible day because two of the boys in her class were making fun of me. Me? Not her, me!! In disbelief I asked for details and she said they were making fun of how I look. What? What? The poor girl was so afraid to tell me about it that she had to spell it. B-o-o B-o-o's. Yes I am 38 years old and still have problems with my complexion. Yes I am one of the .01% of people for whom Accutane did not work (times four) but really it is the least of my worries right now. I felt so terrible. Here I am worried about bringing Nathan in to the classroom and its me that is causing the problems. She went on to tell me that a couple of the kids in her class make fun of her and others for just about everything, having a cold, being short and other random things. It makes me so very nervous about Nathan next year beginning Kindergarten. If these 7 and 8 year old's had the audacity to make fun of a 38 year old woman, what will they do to Nathan? There has been so much progress in the area of bullying and embracing differences but this really shook my confidence for a few days.

Warmer weather

2011-02-18T20:33:00.005-05:00

Warmer weather allowed us to go outside and get some fresh air this afternoon. Libby was at a friend's house but the boys did some riding in the driveway.

I have sat down many times in the past few weeks to write posts and have been unable to formulate anything that makes any sense. I have so many thoughts swirling through my head that I want to share but cannot get them organized. Plus most of those thoughts I've already droned on and on about. Anyway, more to come on things about aging, Kindergarten, appearances and the process of Libby learning about her brothers.

This is Nathan on his Batman bike that Aunt Barbara got for him for Christmas. It is very special. Nathan commandeered someone's at the block party we attended in New York at the end of the summer. Meemaw Falcone was planning to get it for him for Christmas because he just loved it! Of course it is meant for a younger child but I'm trying to worry less about the numbers. Its about what they need and enjoy now! Thank you Aunt Barbara! He loves it! The next pictures are Bennett on Winnie the Pooh. Somewhere there is a picture of me in fuzzy red slippers riding this very same Winnie 36 years ago.

4T!

2011-02-07T12:30:00.004-05:00

I found a pair of 4T pjs on clearance at Marshalls. I went ahead and bought them even though Nathan is just getting into a 3T and guess what? They fit! Not snug tight like they should be but they fit! I swear he has been getting bigger. He feels a lot heavier when I pick him up and he is growing out of some of his clothes. But we weighed him this morning and he weighed the same-28 pounds. Not sure what is going on with that!

I'm not sure what the one sock thing was but he did that all day! He is looking especially progeria-like in this picture which is always difficult to see. The size thing is so funny because Libby is almost eight and wears size six pants which does not bother me in the least!!!

Good Times and Bad.

2011-02-01T15:28:00.007-05:00

A little over a week ago, Mark had to go away on business overnight and was coming home very late on a Thursday night. That Thursday I worked in the morning, volunteered at Libby's school, had an appointment for myself, picked up Libby from school, took a quick trip to Walmart and then took Libby to a play date. Then it was off to pick up the boys from school and back to pick up Libby. On the way back to pick up Libby, Bennett started crying and then proceeded to throw up everywhere. I felt so helpless. I picked up Libby who added to the drama by throwing a fit about sitting next to "pukey boy" because "he's disgusting" {This is the part where you wonder how you managed to raise such a kind and caring little person.} At home I took the kids inside and started getting Bennett's coat and clothes and meanwhile Libby and Nathan were whining that they were hungry and asking when I would be making their dinners. Against my better judgement I asked Libby to start them and she was thrilled. She started by reading the directions and then pulling off the cellophane from one of the trays and the whole tray fell on the floor sending corn, french fries, chicken nuggets and all their crumbs on the floor which had been mopped less then 24 hours earlier. Once again there were tears and drama because I could not help her clean it up. After getting on the right track with the dinner, she and Nathan had their dinner while Bennett threw up a couple more times and I ran back and forth from the car to the house trying to clean everything up. Then Nathan had an accident which of course sends him into a a crying fit because he feels terrible and is afraid I will yell at him. As I was trying to find something for myself to eat, Libby started screaming!! It turns out the candy that came with the dinner was actually Pop Rocks. since I did not read the package, I did not know this or I would have prepared her since she has major sensory issues. She was freaking out because of the sound it was making in her head and the weird feeling in her belly. Once she starts freaking out, it is difficult to calm her down. After thinking that she was going to die, she finally stopped jumping up and down after I gave her a few bites of ice cream. Whew!! What a night!!

If you made it through my tale of woe, you are probably wondering what my point is. Well, my point is that this is a normal mom moment, one of those days that feels like a comedy of errors. Thankfully they are few and far between and the days that go smoothly are more frequent; those sweet little moments of teasing, laughing and watching the kids discover their worlds. Our kids are at such fun ages, Libby is reading and soaking in everything like a sponge, Nathan is becoming more independent and Bennett, well everything he does is pretty cute! But in both good and bad situations, the fact that two of our children have Progeria is always in the background. I've been thinking about this a lot lately and I wondering when it bothers me more, when I am already defeated from the days events and it brings me down more or when I am enjoying the good moments and it surfaces. I have come to the conclusion that it bothers me more when I am enjoying a good mom moment, such as with Bennett last night. I was helping him peak under the bed to see Casey {cat} and hearing him say "Casey, Where are you." Then the site of his thinning hair and one giant tooth bring me back to reality. Those moments just stink.

And a PS-During the detailed evening above, we did avoid one major disaster. When I was passing through the dining room on one of my trips to clean up the vomit, I found Libby getting some tin foil out to cover the tv dinners. Since the cellophane was ruined, she realized she needed something else to cover the tv dinner. She is so resourceful but thank goodness we avoided a microwave explosion! I cannot quite imagine the drama that would have caused!

Bennett takes Boston (Children's Hospital at least)

2011-01-26T18:59:00.006-05:00

For our June trip to Boston, Bennett was at a tricky age. He couldn't walk yet but was ready to be on the move so containing him on the bed in the hospital room was challenging. We figured that it would be easier this time because of his ability to walk but we also thought maybe he would be old enough to present some challenges in the behavioral area. He was much much better than we expected! Yes he is more feisty than Nathan and does not put up with as much poking and prodding but overall I would say he was pretty cooperative! As anticipated it was much better with him walking. He was able to get out of the stroller and play so much more which made him a much happier kid!

Bennett's nurse for the week was Miss Courtney. She was just as nice as Miss Ivy but by the end of the week Bennett just cried when he saw her. Poor Miss Courtney. He wouldn't even get close for a picture. Hopefully she'll get the better patient next time.

Each trip to Boston gets a little bit easier. Knowing what to expect and knowing all the people is a huge benefit. For me there is even a certain comfort to being there. Mark disagreed but for me I think it is about being around people who have seen other kids with progeria. The staff at the hospital and the Devon Nicole House are all so sweet and we don't have to explain ourselves to anyone. They already know.

Getting to know Nathan

2011-01-20T07:33:00.003-05:00

One of the benefits of this trip was getting to know Nathan a little bit better. Libby is an intense child and when she is around, her personality, emotions and bright ideas permeate every available inch of airspace. Of course we love her so much but it has left us wondering sometimes if Nathan is really in there. We honestly wonder sometimes because his choices and opinions rarely vary from his big sister’s. Think “I’ll eat whatever Libby is having?” Libby picks up on little things in conversation while Nathan appears to be oblivious about what is going on around him. We are never sure if this is a cognitive thing or a boy girl thing.
So, it was nice to spend some time with Nathan outside of the shadows of his sister. And it turns out, he is in there!! He remembered lots of things from last year, had opinions about things and most of all he talks nonstop!! Oh my gosh can he talk!! It is so interesting how kids are smart in such completely different ways. We taught Nathan the values of change pieces this weeken and he pretty much got it right away. But then Libby struggled for so long learning change but can learn her way around an electronic in no time! In addition we realized how much Nathan can do independently that we just ask Libby to do because it’s easier for her. He is so ready for more independence. Although he is limited because of his size and strength we need to be better about giving him responsibilities regardless of how slowly he does them. Since we got home I have been letting him pick out his own clothes. It is a lengthy and scarey process as he has to get the stool and stand on the stool while he is pulling out the drawers. It just takes some extra planning on our part, helping him get up and down the steps etc. but he is so thrilled with himself! We are so focused on his health that tend to forget how important this stuff is for his development. Or maybe its not forgetting, maybe we just don't have the energy!

I jokingly said we were going to teach Nathan to read this week so he is ready for Kindergarten. I took some Bob books and a Leapfrog tag reader but we spent little time on reading unfortunately. But he did learn how to swallow pills which is HUGE!

Two doctors can't be wrong.....

2011-01-15T17:21:00.005-05:00

So, the good news is that both doctors were wrong. They were right that they heard rumblings in Bennett's neck but there is no narrowing of the blood vessels or blockages. The doctor at the vascular lab said that Bennett's blood vessels are curved just like the other kids with Progeria which is why they heard turbulence in there. So so happy and relieved about this!

Right before we were going over to the vascular lab for the ultrasounds, Nathan showed us his finger which he said was feeling weird and changing color. Sure enough it was white and then blue. I was in a panic and I sense that Mark was too but of course he tried to hide it. Fortunately we were going to see the cardiovascular people. So, I was hysterical and Mark asked her to look at Nathan's finger first and she did a test and determined that Nathan has.......Raynauds Phenomonen It is its own diagnosis and she believes it is unrelated to Progeria. The solution is to keep his hands warm (we were inside though) and if they change color to put them under his arm pits to resolve it. The only time we would need to contact a doctor would be if the finger did not return to normal within a few minutes. My concern (which I asked her about) is this: Nathan already looks much different and now in Kindergarten he is going to have to walk around with his hands tucked in his armpits??? At least I made her laugh!

So after hearing both of these results, we left the vascular lab on cloud nine! Its so ironic how things like this can put us in such good spirits. Meanwhile they still have a fatal disorder, but we dodged some bad news that day. I guess with something like this you have to find the small reasons to celebrate and the little ways to have fun. Small improvements like a pound, an inch or a tiny bit more strength makes us giddy!

Bennett waking up

2011-01-15T14:30:00.006-05:00

Okay, I have lots of good things to tell you about our trip! Things turned out very well in the end despite an additional last minute scare by Nathan. But this video deserves its own post so here it is. It is 2 1/2 minutes but well worth it. Just when you think he is awake.........he's not. It went on and on after I turned off the camera too but I felt cruel already.

More Pictures

2011-01-13T22:37:00.002-05:00

Playing Ms. Pac-man- very fun and addicting game!

This ball thingy is in the middle of the lobby. The boys (and many other kids) could stand there for hours watching!

Bennett getting ready to drive the Cozy Coupe-lots of fighting over it this week!

Just Nathan

Nathan and his favorite nurse-Miss Ivy!

Mark posing-he knows he's handsome so no need to tell him the next time you see him!

Another ball thingy on a different floor.

Taking our first shuttle ride from the house to the hospital yesterday. We always walk which we love but yesterday was too too snowy!

Bennett getting ready for blood work. She wasn't doing anything yet but by Thursday he caught on and started crying whenever his nurse came in the room.

Okay, Mark and I were fascinated with these! They are little "trains" that travel alone through the hallways delivering meals to the kids. It makes a train whistle sound, turns corners, opens doors and moves around you if you get in the way!! The only thing we didn't figure out was how they get on the elevator. The sign on the back says to let them ride the elevator alone but we never saw it actually happen.

Thursday!

2011-01-13T22:35:00.002-05:00

I am sitting in the sub-basement of Children’s Hospital of Boston (you guessed it, the floor below the basement). We are so far down that I can’t even get internet access so I am writing in Word to copy and paste. Nathan and I are waiting while Bennett is having his medical photography done in the next room. Watching the kids get blood work, sit still for long periods of time and get examined repeatedly is tough but having your two year old being photographed naked for a half hour by a complete stranger to be viewed by complete strangers is just creepy. The other things I can do but this I cannot. Mark is very sweet and does anything to protect me from these things that are so difficult for me so he is in with Bennett. He tried to send me back to the DNH so that I didn’t even have to be this close to the creepiness but I am trying to suck it up and deal (even though now Bennett is crying).

Yesterday turned out to be an okay day. We were anxious to venture out so we went to our occupational Therapy appointment for both boys at 10am and then had a very long lunch in the cafeteria. Everywhere you look in this hospital there are things to entertain the kids so it is easy to spend a whole day here. After lunch we went and had their x-rays done which took a while. Today we got our two shopping bags of medicine, more blood work, another urine bag for Bennett and now the photography. Tomorrow we have to be here at 7:30 am for the ultra-sound with cardiovascular people. This is what will determine the cause/extent of the rumblings in Bennett’s blood vessels. They will be able to determine immediately if there is a blockage but it will take longer for them to tell us about the extent of/if any narrowing (I can hope right?). Please pray for a miracle! They decided to go ahead and prescribe aspirin for Bennett based on the two doctors opinions that there is turbulance in there. I can't believe it!! Two years old!! Anyway, it will be nerve-wracking in the same way it is when you have an ultrasound during pregnancy-you know, vigilantly trying to read the tech's facial expressions and watching to see if they slow down or go back over certain areas. Anyway, then it is off to dentist appointments for both (rescheduled from today) and Dexa Scans for both boys. Then we are off to the airport for our 6:30 pm flight! Yayyy home!! It’s that time of the week! We are very tired.

almost wordless wednesday

2011-01-12T08:52:00.004-05:00

Signs of Progeria

2011-01-11T17:33:00.009-05:00

Well of course we have always known they had it but we thought it was a much milder version. Unfortunately we are seeing lots of signs that they are close to having the real thing. Nathan has a callous on one of his feet due to the lack of subcutaneous fat on the bottom of his feet. The bone on the bottom of the foot pounding continuously creates the callous. So we need to schedule an appointment with a podiatrist for both boys as this is going to be a "life-long issue" There is that term again, life-long medical issues. Its something that still comes as a shock to me. Something I am in denial about I guess. It slaps me in the face everytime. I don't quite get why I am still surprised when I hear the words, but I guess it is just like the physical symptoms for me. I see them everyday but every time I look at their fingers or bulging veins, it saddens me. How can that be?

Anyway, the very very sweet neurologist confirmed the "rumblings" in Bennett's neck which she heard on both sides and not just one. This is indicative of some narrowing of the blood vessel walls which can be confirmed by the ultrasounds on Friday. It is something that is typical of Progera but they as you can imagine it is pretty shocking for us. I asked if it is reversible. They do not believe it is reversable but do think that with aspirin, further narrowing could be prevented. Nathan has already been on aspirin for the last six months.

All but Occupational Therapy for tomorrow has been cancelled due to the two feet of snow they are expecting. I didn't think New Englanders got too excited about snow but apparently two feet gets them riled up. They are already talking state of emergency, non-essential workers kind of terms. Since the x-rays are a walk-in appointment, we decided to wait and do them tomorrow. That way we can get out even if OT is cancelled. Being in a 15' x 20' room with two little boys all day is not ideal either. There is a total of about 4 square feet of open space in the room so it is pretty tricky!

So far....

2011-01-10T12:17:00.006-05:00

We have a lighter schedule than the first visit one year ago. We did not realize that we do not do the MRI and/or the Audiology appointment this time. They are only done at the initial and the two year. That doesn't seem like a big deal but it involved a huge chunk of time pre-MRI appts, sedation for Bennett and going to a different building for the audiology appt. It will make for a much easier week. So far we have only had examinations, EKG and now we are doing physical therapy evaluation. Bennett has some possible "rumblings" in his blood vessels in his neck so they will find out on Friday at the cardiovascular ultrasound what this is all about.

And I don't want you to be dissappointed. I already did it.....

We are here!

2011-01-10T08:02:00.002-05:00

We made it to Boston! We flew this time and I am still not sure which is better, driving or flying. We left our house at 2pm and arrived at Devon Nicole House at a little after 7pm. We probably saved an hour by flying but it is quite a hectic process. We have been very fortunate not to have ever had any major delays either. I'm trying to convince Mark to drive next time but I don't know if he is convinced.

It looks like we have a pretty easy day today. We don't have to be at the hospital until 9:45 am. Its so much better now that Bennett can walk around. The last two visits were tricky trying to keep him on the bed or in the playpen rather than crawling around on the floor. Nothing else new and exciting. I just wanted to let you all know we arrived safely.

Down and out!

2011-01-08T17:45:00.004-05:00

I have been very depressed lately about the boys. On some days it is a minute to minute decision to keep moving forward and not go in my room and hide. I am so proud of myself on most days for not returning to bed and hiding from the world. I am never sure what prompts these low times. I can only assume it is the continued loss of Nathan's hair and Bennett looking more and more like a child with progeria rather than Bennett. Something so little as the fact that Nathan and Bennett no longer needs haircuts can sink me for a day!

It is suffocating going through this second time around and knowing what is to come. It is a different set of feelings and emotions. Just when I think I have experienced every possible feeling, more complicated ones follow. I don't realize that Nathan is continuing to change until I look at younger pictures of him in which he has a little bit more hair and a little bit more fat on his cheeks and face. In the area of physical development, both boys really seem to be improving, but it is a weird thing to watch and help them improve while also seeing the negative changes working at the same time. And I feel like such a vain person that I am so focused on physical cuteness but lets face it, we are all that way. Bennett is just physically so cute right now and I know that will not always be the case. Nathan is certainly cute but probably just in a way that only those who love him can appreciate.

Boston

2011-01-08T17:19:00.002-05:00

I know I have not updated in a while and the truth is that I have tried to several times and been unable to focus on what to write. There are so many aspects of my life and our story that I am never quite sure which direction I should come from at any given time. Right now we are getting ready for our trip to Boston. We leave tomorrow and I have been dreading it. I almost think it is worse knowing what a difficult week it is for the boys and for Libby. We are so grateful for all that PRF has done for the boys and continues to do for our family; however, the week is physically and emotionally difficult for our family. Bloodwork multiple times daily, CAT scans, MRI's, x-rays, measurements and repeated examinations are exhausting to watch your kids go through. I can see that this year will be more difficult with Bennett being a little person of his own. Last year he was a baby and although it was difficult, I anticipate that it will be more difficult now that he knows what is going on. And then of course there is hearing all the things that are wrong with them. In June when we went I had thoughts that the kids were improving but now they both seem to have plateaued. I'm thinking that maybe we will be pleasantly surprised because really it is about what is going on inside their little bodies. We have not had any hematomas, no major falls, no broken bones and no major illness in more than a year! How fabulous is that?

late pictures

2011-01-04T23:21:00.003-05:00

Hang onto your hats ladies and gentlemen because I am writing several blog entries to make up for lost time. Here are a couple of pictures from Bennett's birthday last month. I'm a little late but thought I would still share them. This was the first year that Pop Pop Falcone did his own shopping for birthday and Christmas. Judging by the look on Bennett's face with the Elmo book, he did a great job!

Mr. B

2010-12-29T10:01:00.003-05:00

Bennett's physical therapist at school calls him Mr. B which has stuck a little bit at home. This was the logo on top of the drum that Santa brought him for Christmas. I love it!! I'm not sure what to do with it but for some reason I can't throw it away! It's probably in violation of a Target copyright to post here but oh well. I'm living dangerously I guess!

Christmas

2010-12-27T18:37:00.007-05:00

Christmas was good, nothing too exciting. The kids have so so so much stuff and didn't need anything else but of course we got a bit out of control. Weebles, boy Zhu Zhu pets, Furreal Go Go Walking Puppy, Littlest Pet Shop, Drum Set for Bennett (from Target) Taylor Swift CD, Big Time Rush CD and poster, Headbanz game, Critter Clinic vet set, puzzles, books, Pop the Pig Game, Udraw for Wii, Pictionary for Wii, tent, clothes and many other things. These were not all from Santa, some was from granparents and Aunts and Uncles. Yes, they are spoiled and today they complained all day about having nothing to do. Here is one picture of Bennett holding his soft plush soccer ball (got it from Ikea for $3) He loves it and it is great practice for weight shifting and getting one foot to leave the ground-a requirement for running.

I highly recommend this toy for any toddler! He loves it and it is light enough that it won't knock anything over in our house. The only downside is that it collects every piece of dirt and dust in the house.

He also got a drum from Target which he loves too. He seems to really understand how to use both sticks and bang away! It is very cute.

Nathan loves his Zhu Zhu pets, Busytown game and Hess truck. Libby got Golf Mee Maw's DS which she is thrilled about and she is thrilled with her Zoobles and Littlest Pet Shop Rescue Tails Center.

begging

2010-12-18T10:47:00.004-05:00

Sometimes when I am feeling really discouraged about the boys condition I want to lay down with Nathan at night. Bennett too, but I'm a little big for the crib! It seems like if I could just hug Nathan and love him enough, then I could will him to get better and grow to be a typical teen and adult. It is rare that I do this because frankly sharing a twin bed with a five year old, Buzz Buzz the pillow pet, Baby Jaguar (who talks), Taylor Swift and two large Mickey's is pretty uncomfortable! But last night I did and I hugged Nathan. After swinging around and hitting me in the face, he realized it was me and gave me that sweet peaceful smile. As I rested with him I cried and begged God to please please please allow him to grow big and strong and healthy. I am tired of seeing all the signs of this terrible disorder. And obviously it is not the gnarled fingers, veins and lack of hair themselves, it is what it means for our future.

Distractions

2010-12-10T09:22:00.002-05:00

Distractions are nice and I have been so busy with ebay, work and Christmas events that I have been very happy lately. But then sometimes, even during one of those distractions, the reality just hits me in the face and I am as down as ever. It does not have to be a particular event. In this case it was Nathan getting up this morning and seeing that he has virtually no hair on the side of his head. It is shocking. Lately I think I have been bothered too not just by the size of the boys (I weighed Bennett on my little postage scale the other night-still shy of 20lbs) but also just what Nathan "should" be doing as a five year old. At his age Libby was showering herself, able to go up and down steps to get pjs and getting in and out of the car. Nathan and Libby should be at that age together right now where they can go and do their own thing upstairs or outside without fear of Nathan taking a tiny mistep and falling. If Nathan were a typical kid, it would be so much easier for him to be independent. Then I worry about how it affects his maturity, because it does. Some of the things that he has on his Christmas list are so immature for his age. Hopefully when he goes to Kindergarten he will start to engage in more things that other boys his age enjoy. But then that starts my worry about Kindergarten. How will kids treat him? What questions will Libby have to answer? Will he be able to get up on the bus steps? Will he be invited to birthday parties? What questions will his classmates have? And the list goes on. Really I think that Kindergarten will be a positive experience overall. Its just the transition into a new world where 99% of the kids are typical and Nathan is not. And then we have to do it again with Bennett.

Hand Me Downs!

2010-12-06T10:16:00.006-05:00

Libby and Nathan wore lots of hand me downs from cousins but Bennett is my first to wear some of our own hand me downs. I must admit it is very cute! We are entering the size where I began saving Nathan's clothes realizing we were having another boy. This is Nathan's shirt and this morning I put Nathan's hat on Bennett to go out to the bus stop. Of course he didn't want to take it off! Doesn't he look adorable? And look at that giant tooth!

Long Overdue

2010-12-04T21:44:00.006-05:00

Well this post is long overdue-the first one in more than two weeks. So is this...

We finally turned Bennett's carseat around. He may be just shy of the required 20 pounds but don't call social services on us. He is almost two so it seemed like it was time. Most kids turn around at a year old. He belly laughed the first time he got to ride facing forward!! It was so so cute. The only downside is that he can see if I am eating a snack!

Nothing much new and exciting. We were able to reschedule our Boston trip from the week of Christmas to the second week in January. We were really relieved but we found out the day that Mark's mom passed away so it was difficult to be excited about it and I forgot to share with everyone. I feel bad for asking them to rearrange everything but Christmas would have been so much different if we were preparing for Boston.

Since we started the drug trial, I have been very lax about other appointments for the boys. I need to schedule a bunch of appointments for the boys, GI, dentist and ENT because of Nathan's snoring. It is never fun to go to these appointments because of the reminders about the boys having progeria but they are long overdue.

Here is Bennett on top of the train table. This is typical Bennett. He is not afraid of much and will go to great lengths to get what he wants. Bennett is a rough kid. Although probably not healthy we sometimes allow ourselves to wonder what the boys personalities would be like if they did not have progeria. Bennett we know would be all boy, rough and tumble, crazy boy.

Glimpses of normal

2010-11-23T15:43:00.006-05:00

The past few days I have had a couple of glimpses of a normal life that I wanted to share.

On Sunday, the kids had a birthday party at the Little Gym for a five year old friend. When I arrived I asked her mother, my friend, if she had said anything to the staff about Nathan and his special needs. No, she had not and she was apologetic. I was thrilled! What it meant to me was that she sees us as a regular family and Nathan as a regular child. In her eyes we are not defined by our special needs, which is true friend. So Nathan and Libby participated. Libby was in an older group and Nathan in a younger one, but he did well! He kept up with most things, ran around in the circle and then some things he did rather slowly while a line backed up behind him. He did not care and I was able to not care too. I shouldn’t say he didn’t care. Nathan has a gift of being oblivious to most things around him. Let us hope it lasts! The other good thing about Nathan is that he knows his physical limitations so I was not worried about him doing anything too crazy. So aside from, “which one of these is not like the other”, he fit in and I was so happy that he could participate.

Last night we went outside to play after Libby got off the bus. I cleaned out my car while Libby, Nathan and Bennett played in the leaves. Libby raked a big pile of leaves at the bottom of the slide and then they slid down the slide into the center of the pile. Libby got out the little baby slide for Bennett too. It is so nice now that Bennett is walking and beginning to interact with his brother and sister more. They had a great time and it was definitely one of the more normal moments in our lives.

We had such a wonderful time at Disney being treated like royalty. It was wonderful to be picked up by limo, not having to wait in lines and having an all-expense paid vacation. As wonderful as this special treatment was, what I enjoy more are the glimpses of normal. Watching them be kids anot be limited by their physical issues are my happiest moments. My desire for more glimpses of normal far outweigh any other goals in my life.

Dear Miss Cindy

2010-11-22T20:39:00.002-05:00

Dear Miss Cindy (physical therapist) Please don't panic, but we cannot find Nathan's new orthotics. When I picked him up at school on Thursday, he told me you had taken them off because his feet got sore (still getting used to them.) I thought they were in his backpack but when we went to put them on him, we could not find them. We have searched the car, other family members bags, the closet where we keep the bags etc. We are still looking and have not given up hope. Please don't judge us and think we are completely irresponsible parents! I never would have thought it was possible to misplace a pair of mafos but we seem to have accomplished the impossible. Our house is not that big so I'm baffled!! We will keep looking and will find them soon. Thank you for not being mad at us.

Happiness is....

2010-11-21T21:54:00.006-05:00

Heartbreak is....putting 2T clothes on your 5 year old when you should be putting them on your almost 2 year old and knowing that your almost 2 year old most likely won't be wearing them for two or three more years. {Sigh}

But Happiness is....a one month supply of Pediasure! After months of telephone calls and paperwork, all done by Mark, we finally are able to have Pediasure delivered to our door and paid for through our insurance! Yippeee!!! This saves us a ton of money and many trips to Walmart! Drink up boys!!