Busy Week

Well we had a quiet week last week, only one appointment, but a busy one this week. Last week was Nathan's re-eval for services at school through the IU. His PT is being reduced from 90 min weekly to 60 minutes weekly. Through testing he came out at 24 months for gross motor skills. OT is being added once per month. I'm not sure why I get such attitude during these types of meetings. I just find myself becoming really defensive and annoyed. I really really need to work on this and find out why I find them to be so overwhelming-perhaps it's the number of people, repeating the same information or feeling inferior to them bc we need the services in the first place. I'm not sure. One thing that definitely annoys me is when people call me "mom" It feels so impersonal and anonymous. Libby's teachers don't call me "mom" for goodness sakes! They call me Phyllis or Mrs. Falcone. Mark is not bothered by this at all, so I'm wondering if it is just me. I also told someone at the meeting about the diagnosis for the boys and reported that they are number 6 and 7. She actually laughed and said, "That is so funny, what are the chances?" My response, "It's not so funny when it's your kids."

Anyway, I digress-I thought I was over all that since it was last week but apparently not. They explained that once he is in the school age program, he may not qualify for services. Especially since they are building a new school which will have ramps etc. The school based program apparently makes there determination mainly on academics so if he is able to participate in the classroom, he will not qualify. Since we have medical assistance for him, we can always get private physical therapy which is great to know. Still no word on when services for Bennett will begin but he will have Miss Cindy who works with Nathan at school. She is supposed to work with Bennett at our house and Nathan at school due to them being in different programs. (B is in early intervention Birth to 3 which is conducted in the home and N is in IU 3-5 which is agency based). I am also anxious to get Bennett on medical assistance so that we can take him for therapy at Theraplay too. Speaking of draining people financially. Mark called to find out how much Bennett's stay was in the NICU. He was concerned that with our insurance we may have been responsible for 10% of the total Guess how much 21 days in the nicu costs waiting, waiting, ..............................okay, $200,000!! Bennett was a pretty low maintenance patient too in terms of the NICU. It looks like we don't have to pay 10% thank goodness, a much smaller portion because apparently there is a cap. whew! I feel a little bit guilty for costing people so much money just because we wanted another child, but Mark's response to that was that it gives people jobs! Good point!

This week: Tomorrow morning is PT for Nathan. Tuesday is Libby's eye exam-she doesn't want to go. I took her to my appointment a few weeks ago so she could see there is nothing to be afraid of but she is still nervous. Thursday is the big day. 7:30 breakfast at Libby's school, concert at 9:30 which Aunt Kate, Abby and Dorothy are being so sweet to come to for us, 10:00 biopsies at Dermatology in Center City and afternoon GI appointments for both boys at CHOP main campus.

I emailed Livia yesterday just to ask her the reason for doing the biopsies first rather than proceeding with the clinical trials. I also wanted to let her know I was in contact with PRF (Progeria Research Foundation) so that she didn't think I was trying to go behind her back. In addition I asked about France and if they would also do biopsies prior to giving treatment. I know they would only work with Nathan though because they will not accept anyone under three years of age. I have not heard back from Dr. Gordon at PRF regarding similar questions. I need to think that this clinical trial is going to work. Call it denial, call it false hope, but it is the only thing I have right now. I truly believe it could work. Bennett is the most beautiful baby around (I'm sorry but it's true) and I can't accept that his appearance is going to change. At the Phillies game on Saturday night (thanks mom and dad for watching all three kids!) I look around at the little boys who are so cute but also at the bigger boys and young men. It makes me wonder what the future holds for Bennett and Nathan. I wonder if they will be able to date, marry etc. Nathan and Libby were talking about how they are going to be mommies and daddies someday and Bennett is going to be a daddy. I agreed.

fightin...yet another long one, get comfy!

Okay, so I have a touch of my fighting spirit back. I have been corresponding with a woman from Progeria Research about the biopsies. My last message to her was asking what the timeline is for the "many months" and why they are doing the biopsies first rather than giving the medications right to the boys. She said she would talk with Dr. Gordon and get back to me; however, she has not yet. The last time I emailed her, I had to email back a second time before getting a response. I was a bit worried about stepping on someone's toes, but I need to not worry about that because these are my kids. Mark is more laid back then me and his thoughts are to let them do their jobs because they know what they are doing. Me, not so much. We "trusted" that Nathan's symptoms were due to a gene mutation responsible for Pycno. We had bloodwork and were told we did not have that mutation. We were told that testing in-utero would be futile bc the gene change was so minute. So we had another child, not knowing that Nathan had a progressive disorder and that we had a one in four chance of having another child with the same disorder. Anyway, I'm not saying the doctors know nothing or are negligent in some way. I am merely saying that all this is new to them and we have every right to question them.

So I think I will email Livia and tell her about my correspondence with PRF (progeria research foundation) and ask the same question about why they are doing the biopsies first. I will also ask if France would do the same thing. I'm not trying to go against Marks wishes, but I just can't sit back and wait "many months" if there is something they can try first. If treatment could help Nathan's joints not hurt so much or help them both put on weight, that would be awesome!

Today I have a meeting at Nathan's school regarding PT/OT services and that is it for the week. I rescheduled nephrology from Thursday to July 7th so that I can volunteer for the last time at Libby's kindergarten classroom. We decided to move her up to first grade. Her teacher felt that she was borderline between being ready for first and needing to repeat kindergarten. I hope we are making the right decision. We took many things into consideration, her height, academics, confidence, her wishes and maturity. I hope we made the right decision for her. I think having her be farther from Nathan in school will be good too. It will give her more of a chance to separate herself from her brother's medical issues. Nathan will not start school until he is 6 (if he is potty trained by then).

About the potty training, we really have to get Nathan's constipation under control before we succeed. It is awful to see him in pain, screaming. I talked to the GI doctor about it last time and he decided to continue with the mirolax. It is a powder we put in his first drink of Pediasure in the morning and often he does not finish it, thus not getting all the medicine. Now it occured to us to put less pediasure in his early morning sippy cup to ensure that he drinks the entire thing. (Not sure why we didn't think of this earlier) We will see how this works prior to our June 4th appointment with GI.

The Pool etc.

So I have been nervous about going to the pool this summer. Last summer it was difficult to see all the kids much younger than Nathan running around the pool and watching Nathan look so different and struggle so much with mobility. Last summer I was pregnant and hopeful for a healthy full-term baby. This summer I have the knowlege that I now have two children with a progressive disorder and shortened lifespan. I still can't believe I have two children with medical issues, developmental delays etc. It is difficult to fathom. Anyway, Mark took Libby and Nathan to the pool yesterday and even he was a bit bothered by it all. He is worried about me having trouble with all the healthy children running around, the perfect mothers, the pregnant ones... What bothered him is that at almost 4, Nathan should be fairly independent, but instead you have to watch him like a hawk because one mistep and he's down. I had one child last summer ask what is wrong with Nathan and I know there will be more this summer. And to know that my beautiful baby boy in the stroller will also become that is so unthinkable. Do I have to describe this to everyone? Libby is so sweet-she keeps saying she thinks the doctors are wrong because Bennett looks normal.

I don't know when PT will start for Bennett. He is still not trying to do anything. I cannot imagine having a baby that did not require all these appointments and special care. I know I had it with Libby but I can't even recall what it was like.

I am still in a very bad place. I need a happy pill of some kind, but their doesn't seem to be such a thing. I feel like hiding in our house so I don't have to interact with people and explain everything but I can't do that either. I don't want to be jealous of even my sisters with their children, some of whom look like me unlike my own children. I am not jealous in a mean way, just in a wishful thinking way. My sister will soon be having her baby and I am finding it too painful even to talk to her. Again, not because I am angry with her but just because I wish I had the same experience. I wish we could share our experiences but mine are so different. I am not sure how to go about in a regular world when my family is not "regular." I don't know how to mesh the two. I don't want to become angry and bitter lifelong but often it feels like I can't get back up. My boys are going to die before me. They are never going to get married and have children. We are raising them with the knowledge that we will lose them before they have lived a full life. I can fathom putting your energy into that for one child, teaching them to be courageous, perservere etc. but to do all that with two children seems exhausting.

I appreciate so much the people that have commented, emailed or sent cards. I know it is difficult to know what to say and some people are worried about saying the wrong thing. I appreciate those who have reached out and taken the risk if only to say that they don't know what to say. It really helps.

It hurts, It hurts

So just a few minutes ago we were outside and Nathan was on his new scooter (consignment store purchase). I saw a boy on a bike, talking to one of Libby's friends and they were whispering and looking at Nathan. I asked Libby's friend what the little boy was saying and she said he asked what is wrong with Nathan's face. My heart felt like it was breaking. I know all kids are going to be made fun of for everything and anything, but it feels like the beginning of lifelong teasing. Nathan had no clue but it hurts so badly to know that my boys will have to endure this when I am not around. I cried when I walked away. And to know that Bennett has to go through it too. Oh gosh I feel like I can't handle it. I talked to the little girl's mom and she said that the boy has also said stuff to her son about Nathan's appearance. To know that people are talking about him is so painful. I think it is one of the hardest parts of being a parent in general, hearing that your children are being teased or excluded. To know that some people will judge Nathan and Bennett for their appearance alone is awful.

When we came back in the house, I sat down and talked to Libby. I asked her if she ever heard anyone making fun of Nathan or asking why he looks different. She said "no." I told her that Nathan and Bennett are going to look different and people are going to make fun of them. It is going to be part of her job as their big sister to stick up for them. She has such a difficult road ahead of her too being their sister. I cried and she hugged me. She is so sweet.

If only this clinical trial would work to stop the progression. If only God would answer our prayers the way that we want him to and make this all better. It hurts so bad. I just want it to all go away. I am so scared about the future, scared this is more than I can handle. Why would God put in this situation when I am so weak. I am crying now, I'm so sad. I cannot put into words how much I hurt. Will things ever be better for us? Sometimes it feels like a life sentence of emotional pain.

my googling

So I googled the slow gastric emptying and came up with some interesting things. There are two causes, blockage (which we know he doesn't have) and gastroparesis in which the stomach muscles are not functioning properly to break down the food and "propel it to the small intestines." Symptoms of this include feeling full after only a little bit of food, vomiting in which food particles are recognizable (we had an aha moment when we read that bc unfortunately we have noticed that his food is not digested hours after he ate) and stomache distention. Liquids are obviously digested more quickly; however, we were surprised to read that fat and sugar can slow stomach emptying. So changes in diet can be helpful and there are two medications. I guess we will find out at the GI appointment what the official interpretation of the study is and how to proceed.

The "many months" comment from Susan, the executive assistant at the Progeria Research Foundation (PRF) has set me back a little bit. It's difficult knowing there is a possible treatment that will be put on hold. I am sure they know what they are doing and have good reasons; however, I would just like to better understand. I asked Susan to clarify and she said she will have to have Dr. Gordon answer my questions and give us an estimated timeline. I hope I am not overstepping my boundaries with Livia, but I need to know.

gastric emptying

We just got back fromt he gastric emptying study. It was 3 1/2 hours that we were there. They couldn't figure out which of two gastric emptying studies they were supposed to do on Nathan so they spent an hour calling around. Finally we just went with one of them, unfortunately it was the one that was 2 hours. First he ate some eggs with radioactive stuff in them and then they secured took images ever 10 minutes for 2 hours. For two hours he was taped down to a little thing that slid under the imaging thing. He could use his arms and turn his head and they had a tv off to the side. He was such a good boy. Two hours is a long time for an adult let alone a child. The nurse said it looks like his stomach is emptying at a slower than normal rate so we will see what that means.

I finally got a response back from the Progeria Research Organization. I emailed them about support and asking them if any fundraising efforts towards progeria also benefit the trial that Bennett and Nathan are undergoing. I really didn't have a clear question, just kind of looking for more information. I emailed her again yesterday and this is the response I received today

"Dr. Gordon informed me that she is aware about the biopsies and they are sending them to her. She is in close contact with Dr. Medne about your sons. Her plan is to grow out the cells and then she will be working with another lab to test the drugs on the cells in the laboratory. She expects this process to take many months, but she is happy to keep in touch along the way about your sons."

Ughhh is all I can say! Many months! So the waiting will continue for a long time. This is even before they get medication in the boys! Maybe we should hop a plane to France!

EI

Bennett had his evaluation for Early Intervention on Tuesday. It went okay, pretty no nonsense since we have a diagnosis. Apparently kids automatically qualify if they have a diagnosis. It's difficult to rehash all the negative. In order to cope with my children having a progressive disorder, I try not to think about it but these appointments require me to repeat all of the information setting the wheels of my brain in motion. When I said it is a progeriod syndrome, the one lady said she could tell from the pictures around the house that it looked like progeria...great. Anyway, I was pretty well behaved, probably quite delightful compared to some of the homes they visit. They did stand outside and talk afterwards which always makes me paranoid. After about ten minutes I opened the door and asked if everything was okay. Is it just me or is it strange to leave someone's home and just stand in front of the house talking?


The team thought Bennett's reflux is not under control based on his responses to touch, movements and avoiding eye contact. We have a GI appointment in 2 weeks so I guess we will talk to the doctor about that. He also has extremely limited range of motion in his head. He tracks with his eyes but can't move his head from side to side. Being the only baby I am with, you don't think about those things but thinking about it now, babies heads can flop to either side.

Today is Nathan's gastric emptying study at 10:30. I forgot about it until Mark was looking in our Hotmail calendar yesterday. Tomorrow is PT and then we are done for the week.

The Weekend!

On Saturday night we tried going out to eat for the first time with Bennett and it was horrendous. Bennett screamed most of the time and Mark and I ended up snapping at each other because we both wanted to be the one to take him out so the other person could finish eating. It was stressful and we are both stubborn. No dinners out for a while. He was good during church though so I guess that is more important.

The newborn phase is just not my favorite and we have been dealing with it for five months now. Typically within five months of having the baby, he/she is rolling, sitting and eating some baby cereal. I'm not saying Bennett should be doing those things, technically he is 3 1/2 months but I am saying that within five months they are usually showing some major signs of moving on. We have had five months of......laying on the floor, looking at us and talking to us, but not much else. He really should be attempting to roll over I would think. Mark has been stretching him which is awful to listen to. I'm so glad Mark does it because there is no way I could. I can't imagine having a typical baby again where we didn't have to do painful stretches with him or her! Tuesday is the evaluation for Early Intervention. I am not looking forward to the process of the eval., several people marching in and staring at me while I rehash everything. I just wish we could get started without all that. I will be praying not to get defensive and have attitude with them as they are here to help us. (I know, you are thinking Phyllis? attitude?)

Mark weighed Bennett this morning and he weighed 11 pounds even. On 4/17 at the doctor he weighed 10 pounds 2 ounces so one month later he has gained 14 ounces, not stellar but I think adequate, plus he expends alot of energy screaming! I weighed Nathan today and guess what he weighed? 23 pounds, 8 ounces! I think that may be a little bit up but I'm not sure! A couple things I want to ask GI about is if we could try the appetite stimulant again for Nathan and also Bennett. It really worked for Nathan for a while. I am also not sure what we want to move forward on with GI if we are going to do the trial study thing.

Overall it was a good weekend. Libby learned to ride her two-wheeler today. We were so so proud of her and she was pretty pleased with herself! She's a good girl! Nathan makes all his decisions based on what Libby wants to do so yesterday I said, "Nathan, you like your sister don't you?" His response, "yep, Libby is a good person" I laughed out loud! I can't even spell it like he says it either, it's kind of with a 'w' instead of an 'r'. It was very cute!

Some more thoughts

So I know I think too much, but I've been wondering why looking at the pictures of Libby when she was little make me so sad. Obviously part of the reason is because Nathan and Bennett will not look like that but I felt like there was something more. I think that looking at the pictures of her as a baby and toddler takes me back to a time before we began to realize that something was wrong with Nathan and the years since then that we have struggled to find a diagnosis and struggled for acceptance. When Libby was born I was scarred by the pain of infertility but I had no idea of the pain that was ahead. I can't tell you for certain that this pain is worse but I think it must be if I look back on Libby's early years and long to be back there. Despite going through adoption there are no guarentees of a healthy child and we were so blessed to have her and be able to watch her blossom into such a sweet little girl. Like I said, I know I think too much. My mind is always going.

Uh oh

I have been feeling really positive lately, but I can feel myself slipping. I wish Bennett would have those thick meaty baby legs. Instead I'll be putting summer outfits with those skinny shiny little legs sticking out! He is still in 0-3 month clothing and I'll be putting Nathan in the same clothes he wore last year. Nathan just got back from Golf Mee Maw's house. He went there overnight. Libby missed him alot but it was nice not having to worry about him and the steps for a night. Libby is so independent and can go up and down freely which is great. I can't wait until Nathan gets there. It just might take a few extra years. We got the sign up sheet for fall soccer. Nathan would officially be allowed to play this year which made me a little sad. Oh well, not the worst thing in the world I guess.

Good Things

I have been having a couple of really good days regarding the boys. I don't know what changes on those days that are good. When I am feeling positive I can't imagine those low low days and vice versa. One of the things I know that has helped is looking at each of the profiles of the kids on the progeria website and reading the encouraging information about the research. The children are all so precious. Even though that is not exactly what my kids have, it is so similar that I feel a connection. Over the past month I have tried contacting four parents of children with progeria and gotten no response which is discouraging. I also contacted the progeria website asking about the possibility of us being involved with their foundation. I also asked if we had people donate to the progeria research if that would be the same research from which Nathan and Bennett are benefitting. The woman did get back to me but said she would talk with the director and I have not heard from her since (this was two weeks ago). I almost wish they had classic progeria so we could be a member of the progeria "club."

As luck would have it, (well, our luck) the June 4th biopsy appointment is the same day as Libby's school concert. It seems so ironic because this is our big concern, that Libby will feel like we give the boys more attention and so to have to miss that is frustrating for me. I missed her Christmas one because of Bennett being born prematurely. I emailed Livia to determine if she could get an appt sooner. We emailed back and forth today and she said that the previous appointment was changed because it was on a friday and the biopsies have to be overnighted to Boston. I told her about Libby's kindergarten concert but obviously that seems trivial to them. Anyway, this was her final response today which I wanted to share. She has been the most empathetic of anyone we have encountered at CHOP. She was the one at that first appointment in September 2006 that offered to hold Nathan. (It's amazing that we now have two children with a progressive disorder; however, somehow things are better now. I guess the shock has worn off)

Believe me; I wish I could have arranged for everyone to do it within a weeks time of having met you, now almost a month ago. I can only imagine that every day feels like an eternity. And we will still have to wait from Boston to hear back their results; that wait won't be easy either. Thank you for your patience.

With my kindest regards, livia

I just thought that was very sweet and made me feel so good that she is advocating for us. She is not even in the genetics department anymore!

CHOP and my new friend Michelle!

My second post in one day, but don't panic I'm not suicidal or anything. A woman named Michelle called from CHOP today. When we were down with the feeding team I had asked to talk to a social worker. I asked the social worker how I go about getting assistance with scheduling appointments, having someone advocate for us to get test results etc. (thanks to my sister Jodi's suggestion) She referred me to this woman Michelle and to the complex scheduling department. Well needless to say I called neither of them; however, today Michelle called me! I told her I have a list of several appointments to make but am overwhelmed and she was so sweet and agreed that scheduling more than one or two appointments is just really overwhelming. She just had a way about her that was so reassuring. Anyway, the part that is annoying is that apparently they scheduled an appointment with Nephrology for both boys on 5/28 and didn't tell us. Also the date we thought was the biopsy was 5/29 and it is actually 6/4. I was freaking out because I don't understand why they don't tell us things (not at her, just to her)! She agreed and said that is what she is there for, to help navigate. We (Mark included) are disappointed the biopsy is a week later. I was so happy to have one week of May over and be closer, but oh well.

She was also able to reschedule both the boys GI appts that were previously on two different days for the same day as the biopsies-in the afternoon. She also scheduled Nathan's gastric emptying study for 5/21 and is having someone from complex scheduling work on scheduling the sleep study that needs to be done. She explained how complex scheduling works and I told her it sounds more complex than actually scheduling yourself. The pediatrician is required to fax the necessary appointments to the complex scheduling people and only if three appointments are needed. She said other parents have expressed concerns that it is a complicated process, but the advantages are that the pediatrician is in the loop and they (the complex scheduling people) often have access to appointments that wouldn't otherwise be available. I am going to try not to be intimidated by the process and actually utilize the service.

I got off the telephone and was so happy to have accomplished so much in a telephone call. And then it hit me..this has become my job! It is so surreal. I still cannot believe that two of my children have so many medical needs and this is going to be our life, going to doctor appointments! ahhhh Now I am back to being happy that some of the things are off my to do list thanks to my new friend, Michelle. She may regret ever calling me because I may be bugging her alot!

You never know

I never know what is going to trigger the feelings of sadness for me. I expect it when seeing babies, seeing boys play, seeing toddlers move with much more ease than Nathan, but sometimes things that bother me come as a surprise. Yesterday I gathered some pictures of Libby for her "Top Banana" project at school. She needed pictures from when she was a baby until now, which obviously required that I page through the albums to pick out some good ones. Typical of a first child, we have about four albums of just her first 2 years! Anyway, it made me sad, seeing the pictures of her first teeth, crawling, kneeling, crouching...doing all those things babies and toddlers do naturally. They are so flexible and she was such a beautiful baby (as she is a beautiful kid). Of course there was the downside with that mobility. I have pictures of her crawling in the fridge, standing on chairs and even after she had knocked down a plant! LOL It put me in a funk for a while, nice reminder of how much we enjoyed the baby stage with her but also dissappointing that we didn't have that with Nathan and most likely won't have it with Bennett. I long for that again but three children is it for us. I am happy with having my three. I wonder what it would have been like to have our "typical" child last instead of first though.

I said "most likely" regarding Bennett's development because I have a renewed sense of hope about this treatment. Call me crazy but in theory it seems possible. You are probably getting worried right about now, thinking that I am only setting myself up for dissappointment, but you never know right? I was thinking that so much has happened in the past year. Last year at this time we had no idea that Bennett would be here or that we would finally have a diagnosis for Nathan (and unfortunately Bennett). I'm just thinking that next year at this time we could be celebrating big improvements in the life of our family. I have a renewed sense of faith that God will bring us through this, that we will come out on the other side; either with physical/medical changes in the boys or acceptance and contentment on my part. Either way, I am just ready to be happy again.

uh oh-Nathan is screaming. Apparently that's what 3 year olds do when they want something.

Happy Mother's Day!

So I have been researching the trial studies they have done on mice with the FTI medications. It is so encouraging and makes me hopeful for the future. If the aging process could be stopped in both boys, how awesome would that be? Whenever I click on my blog and see those pictures of Nathan, I just have to laugh. He is such a cutie. He has been spending a lot of time in time out-cracking down after being too worn out to discipline him. He talks back, tells me "no", argues (without backing down), ignores directions (or just takes his sweet old time doing them), hits Libby, gets out of his seat at mealtime or yells at someone. He usually yells at Libby when she is nicely trying to help him. The other thing he does is repeat himself, over and over and over and over. He doesn't stop when you kindly ask him to do so or threaten him with consequences. Last week he took scissors and cut his backpack!!! Overall he is a great kid, just needs a little more direction these days.

Happy Mother's Day to all of the moms, those who have old or young kids, those who mother other people's kids, fathers who mother and those who have lost their little ones! Happy Mother's Day to all those who know they are meant to be mothers and haven't gotten there yet. It's worth the wait!

Nathan in his pjs

This is Nathan in his brand new Small Paul pjs I bought for him at Marshalls. They only had size 24 months but I got them anyway-a little snug but they fit! See this is why I don't get telephone calls made, not because I am so crazy busy but just because I don't feel like making them. I intentionally don't put Libby's picture up here for safety reasons. I know it probably doesn't make much sense since I put the boys pics up all the time, but for some reason it seems different with a girl.

off my chest

So I need to get something off my chest. Nathan and Bennett are going to become more and more old in their appearance. They are not going to be attractive, gorgeous kids. The best they are going to look is how Bennett looks right now and from there it will get worse. I feel guilty about saying that. It's something you are not allowed to express as a mother. Yes, Nathan is adorable and cute because of his spirit, but like I said before he is not a child that should be in pictures for a magazine. His skin is wrinkly and pocked, his fingers are misshapen, his hair is sparse and coarse and his veins show through his skin. He is not "attractive" in the same way as Libby. The picture we saw of the 17 year old girl was hideous, ugly in the sense that you had to look away. The thought that our boys will become that way is unbearable to me. I wonder what they would have developed into had they not had this horrible disorder. Would they have looked like Mark or me? I talked to Mark about it this morning and he was very sweet about listening and not trying to change my mind. He did say that we have the clinical trials to be hopeful about. It may extend their lives, but what will their quality of life be? It's not going to stop the disorder, dead in it's tracks or reverse Nathan's already aged appearance. I don't think that Nathan is ugly right now, but what if I do some day? Will I still be able to love him? Of course I know I will. Here comes the guilt. How could I question that? And why is appearance so important to us all? That's all we talk about! 'oh what a beautiful baby, oh he is so gorgeous....' Why does it seem to be my main focus? I'm not a vain person, at least I didn't think I was. I'm not into my own appearance! Sigh.....you see how exhausting this is on my poor little brain.

I hope that my honesty helps someone, somewhere. I know there are very few people going through exactly what we are going through; however, I hope that someone can benefit from me putting myself out there and sharing my innermost thoughts.

on being happy

Why am I so angry about all of this. Why am I so angry that I have not had the chance to give birth to a full term healthy baby and watch them grow and develop in a typical fashion. It's not going to happen for us so I have to figure out a way to be happy. Bennett is our last child and we will have to try to remember watching Libby's first year unfold. Despite wanting to be in a coma for the rest of my life, I have to pull myself back up again, but how will I do that? I can't do it alone so I guess I will pray that I am able to see the positives in my life. Right now the positives are this....

Mark and I are healthy, Mark is a great husband, we have a great family-everyone in our family loves our children as much as humanly possible. We live comfortably and I love our house and neighborhood. I had the chance to be pregnant and give birth not once, but twice. Nathan and Bennett are not cognitively impaired. Libby is an awesome healthy kid full of personality. Bennett and Nathan are here now and give us lots of love every day. Despite Nathan's inability to do sports, run or climb steps independently, he can walk, ride bike and play with other kids.

...and yet still I can't shut out the negative thoughts...Bennett is such a beautiful baby. It does not seem possible that his appearance will change.

By the way, some lady at Nathan's school asked what is up with his hair. She asked if it was part of his "treatment" (I assume she meant chemo) I simply said that it is part of his syndrome. Her response-"I don't know his syndrome." That was it! I smiled and didn't say anything else. I have to give her credit for asking rather than pretending Nathan is normal! I get tired of the "knowing" empathetic looks and the whispers of how cute he is when I know they are trying to overcompensate, feeling bad for looking at him a little to closely. I know because I have been guilty of doing the same thing when a child with special needs catches my attention.

back down

Okay, so I was never really up, but I am just struggling with this every day. I am feeling so overwhelmed with what appears to lie at the end of the road of this diagnosis. I still cannot believe that we are doing a repeat with Bennett, not eating and not growing. I am still struggling to put one foot in front of the other, living with chronic pain-the emotional kind. Everytime I see people with three healthy kids, it is painful. Everytime I try to feed Bennett and he eats 2 ounces. Everytime I see typical babies. Everytime I put Newborn clothes on my 5 mo old or 24 mo clothes on my almost 4 year old. Also on my mind are all the telephone calls and appointments that need to be made, forms to be completed, emails to return, telephone calls to return etc. My to do list is growing with little things to do for everyone Nathan, Bennett, Libby and myself. A to do list this big seems insurmountable to me in my current emotional state and with the bit of ADHD that I have. I took the car to the dealership yesterday for an oil change and was armed with my appointment book and cell phone in order to get some things done. Well that was a ridiculous expectation with a baby in a little "holding" area of a dealership, sitting so close together I was trying so hard not to let him cry. Perhaps if I had my stroller to walk him around on the lot and keep him from crying. Did I mention that I backed over the stroller last week at Nathan's school? Yep, I buckled the kids in, but forgot to put the stroller back in the car and......crunch. It seems like only the one wheel is affected so we are waiting for the replacement wheel we ordered.

I don't know if I can pin my hopes on this clinical trial. I don't know if it is naive to be hopeful and expect it to change the coarse of this disorder for both boys. Am I allowed to hope that this is the miracle for which we have been praying or do I have to accept the fate of raising two children to young adulthood, only to lose them.

Bennett has a bit of a cold. Hopefully it won't turn into anything serious.I must go now. Libby is saying she wishes she were someone else's kid because I won't let her use the stapler! See, we are normal!

Our Small Family

Libby's 6 year physical was yesterday. She is in the 10th percentile for height and 50th for weight. Dr. L said she does not have an ounce of fat on her despite the discrepancy. She has an "athletic build" (she gets that from me)! Anyway it looks like all our children will be on the short side. Libby makes Nathan's short stature not so noticeable which is nice. A while ago I mentioned to Mark that the low beam in our basement would prevent us from finishing it off for a family/play room. His response, "Have you seen our children?" I guess he's right! Dr. L did notice that Libby may have a problem with her vision, something about muscles being unbalanced? He just wants to be sure it does not affect her reading. So Libby has been referred to a specialist of her own!

Big Ben is as smiley and chatty as ever! Nate the great is the same too. Nothing new to report. Bennett is not really trying to roll over or anything. Adjusted he is 3 months old so I would think he should be at least trying. Oh well. I tried for two hours last night to upload a video on here of of Bennett talking to his toys but could not get it to work.

Happy Birthday Mark!

May 29th

May 29th seems so far away! I hope it comes quickly, but even then, we won't know anything. We'll just all be officially biopsied. It seems weird that Libby isn't included in the genetics stuff because she is our family, biological or not. I wish we weren't going through this. I wish we were just enjoying our life like everyone else with young children. This was supposed to be the best time of my life and it feels like I am wishing it away, searching, chasing a dream but at the same time stuck and not moving forward. I hope this works. I hope it gives Nathan and Bennett a chance at getting big. I truly believe that God is capable of healing Nathan and Bennett, the big question is whether or not he chooses too do so.

Like I said before I don't understand why I am having such a hard time with this when other parents of special needs kids can be so positive all the time. Am I just being more honest or am I the only one who feels sad when I see how different my son looks. Or is it that I grew up feeling so different and understand what that will be like for my kids. I know I need to talk to other parents in similar situations, people I can relate too but I'm not sure where I would find the best fit. Part of me wishes they would allow me to join the Progeria "club" because we are dealing with such similar issues; however, that is only for the Hutchinson Guilford type of progeria.

This is so hard....

This continues to be so hard for me. I am relieved to have a diagnosis but the differences between Bennett, Nathan and other kids is still so difficult. Once the shock wears off, you still have to live day to day and fight the fight. Living each day and trying to find normalcy is often a struggle. Yesterday we went to the May Fair at Libby's school and seeing other 3 year olds (and younger) running around, falling and bouncing back up is upsetting when everything is so awkward and painful for Nathan. Some of them are almost twice Nathan's size and so independent. We have to watch Nathan's every move. He was able to do a couple things. He liked the one inflatable and it was great exercise for him. He just gets stiff and sore. It is also difficult seeing babies that are all filled out too. Bennett is just not a great eater, the same as Nathan. That alone sucks the energy out of me. It is such a pleasure to watch a baby eat, grow and develop over the first year of life. What I wouldn't do to have a baby who ate and grew and rolled and crawled and got teeth....

With the relief of a diagnosis also comes the relief from being able to talk to people and define our situation. For so long it has been the elephant in the room and I haven't even known how to begin discussing it with people. It is a relief to talk about it even though it is sometimes painful (and even though I can't pronounce it yet). I know it is sometimes awkward for people to talk about but everyone has been so sweet. I'm not sure if I said this before, but our situation doesn't mean that people can't complain about there own difficulties. Just because our children have a progressive aging disorder doesn't mean we can't appreciate the day to day struggles of parenting and other family issues. If anything it is a nice distraction to talk about regular things and get the attention off of ourselves. Plus we get to deal with all that regular stuff too, on top of our differences. The only thing I would prefer that people don't complain about is their children outgrowing clothing to quickly. The sadness of my children not getting bigger and outgrowing clothing is one of the most difficult reminders for me. But it is going to happen and I have to learn to deal. I don't want people to feel like they have to tiptoe around us even that is the reality.

It is weird being the family that reminds people to appreciate their lives, healthy children etc. We are the family that makes you think, 'well it could be worse....' very strange. Below is a picture of Bennett, almost smiling. When he smiles it makes all my troubles disappear!

Look what I found!

Look what I found at a yard sale this morning for $3. We have been promising Nathan a pedal tractor if he starts going on the potty. I was so excited! Nathan was so excited until we told him he can't ride it until he starts going in the potty all the time. Then he said "but I wanted the big one", meaning the one we saw online with the attached wagon that costs $130. I guess new and bigger is more exciting but for the difference of $127 this will have to do. He did burst my bubble though. I said we would go and take it back and he asked if he could come with me!! Uggh Nothing like a 3 year old calling your bluff!

looking to help?

I know people are feeling helpless and wondering what they can do to help us. I am happy to tell you there is a way you can help. We are in desperate need of someone to help us......

......potty train Nathan before his fourth birthday in August!! Seriously we are at a loss as to how to potty train this child. He could care less!!