Never a dull moment.

Well there is never a dull moment in the Falcone family. The kids and I were rear ended. We picked Libby up from school and we were on our way to take dvd's back to the library. It was a young teenager who hit us. The kids and I are fine as well as the kid who hit us. It was quite a jolt. The kids were crying. The guy's airback deployed and his car was scrunched up pretty bad. It was smoking and had to be towed away. Having a higher car has it's advantages. Anyway, it was an exciting night. It happened right in front of the police station which is adjacent to the library. Everyone was very nice. A lady behind the guy that hit us got out and took charge of the situation. She calmed me down because I was freaking because my kids were upset. She said "I understand. My sister has kids." For some reason I found that funny (I didn't laugh, but it wasn't what I expeced after "I understand.") She seemed like one of those people who enjoys being at the scene and in charge because she called herself "the witness" when the police came. She let me use her cell phone because mine didn't work. The EMT got the kids out of the rain for me and put them in the ambulance while I tried to reach Mark. Then he (the EMT) walked us over to the library where they welcomed us with open arms! The kids played on the computers and I actually returned the DVD's! The ladies in the library thought that was really funny. They were just so so sweet. So we had a nice refuge from the cold. As we walked over to the library, poor Libby said, "This is the second car accident I've been in." She also said that if she had just road home on the bus like she usually does then we wouldn't have had an accident. It just makes you grateful that everyone was buckled in safely. Anyway, I feel bad for the kid. It would not be a fun night at his household. He told me he fell asleep but he told police he just wasn't paying attention so I'm not sure what happened. My car is driveable. It doesn't actually look that bad. The black plastic on the bumper was hanging off. Libby and Nathan are sure that Daddy can fix the car for us. Hmmmmmm not sure about that one. I am hoping the kids are not sore tomorrow. I didn't mention it because I don't want to put ideas in their heads. That would be a lovely excuse to skip school!

OMG

Okay my sister saw this movie preview and told me about it. I am crying, not sure if I can go see it or not! It is about parents who have two young children who have been diagnosed with a life-threatening disorder.

Extraordinary Measures

Kids parade favorites

Here are some of the kids favorites of the parade. They also liked the other Disney characters, Donald, Minnie, Goofy etc. but I didn't get a good picture of those. If anyone knows how to arrange pictures on blogspot, let me know. Once I get them on here I can't move them.

sometimes....

Sometimes I just really can't believe this is happening. I go along and feel good and then boom! It's like this shadow looming over me. Our life is so normal, but not normal.

Thanksgiving

We had a great Thanksgiving today. We usually travel to see Mark's extended family in New York but decided to stick around here this year. I didn't feel like I could handle being around the babies this year that were born around the same time as Bennett. Mark says I have to face it eventually, which is true but for this year it was too difficult.

We decided to go to the parade and then to Memaw and Pop Pop Falcone's house instead. We had a fabulous time at the parade! We were supposed to meet friends of but unfortunatley we we were trapped on different sides of the Parkway. We got really really lucky and just as we walked up to the parade route in front of the Art Museum, a woman asked us if we wanted her tickets to sit up in the bleachers! I almost said no since we hadn't even looked around yet but I am so glad we took them. It was awesome having a seat and being able to see everything so clearly. Bennett was also able to snuggle in and sleep for a little bit too. The kids didn't complain about standing or being tired. It was a little chillier than I expected so I felt bad we had brought Bennett but he survived. The poor third child gets toted everywhere. We even passed him off to a stranger in order to get down from the bleachers.

Then it was off to the Falcone's which was a great time too. Nathan and Libby enjoyed playing the Wii with Aunt Andrea and Uncle Jeff. Bennett liked the mashed potatoes, Nathan enjoyed the cranberry sauce and Libby......the coconut custard pie (who knew she liked coconut???). It was a wonderful day. I am very thankful for the life that we have. I know there are many people out there who are suffering far worse than us. We have a tough situation but we are alright!

picture

Here is the photographer's blog with a picture of our kids. Bennett looks like he has a toupee (I must not have gotten all the shampoo out) Nathan's hair is sticking up and Libby's front tooth is crooked, literally ready to fall out. But I was by myself and they look great! Libby is so photogenic and she really has a great smile for this picture! Thanks Carrie! I highly recommend Carrie. If she can get my kids looking so fabulous just imagine the possibilities. What a wonderful picture! I'm so excited to see more.

http://www.emaphotography.com/blog/

Solidly Average

We had Libby's conference today as well as a meeting with the school psychologist to review the academic testing that we requested. We are very thrilled with the outcome. First we met with the school psychologist. Libby scored in the "solidly average" range in most areas of testing. She does exhibit some limitations with her working memory which is apparently different than short term memory. As expected her focus and attention continue to be problematic. The bottom line is she does not appear to have a learning disability. Libby's teacher is really happy with her progress in the classroom. She is still requiring a lot of one on one attention and support. I didn't think Libby was participating in class but her teacher assured us she is raising her hand and answering questions which makes me so happy! I was also worried about her socialization because she is a bit immature but Mrs. D said she has a little group of girls she gets along with very well. I am beyond excited. I know that Libby is still struggling with getting started on tasks, reading and understanding directions as well as staying focused. We will most likely pursue treatment for symptoms of ADHD but I am so excited that she does not seem to have a learning disability, that she is making academic progress and that she is participating in class is wonderful! I am sure there aren't too many other parents who are thrilled with "solidly average" but it suits us just fine.

And now for a bit of cheesiness...I checked on Nathan tonight a few minutes after he went to bed. He requests that I check on him four times but usually he is asleep at first check. Tonight he was not and I laid down with him. The smile, the pure joy on his face was the most wonderful thing! He wrapped his little arms around my neck and looked like he was in heaven. It continues to amaze me the way in which the relationship with each child is so special and unique. I am not sure how they can each be my favorite but they are each my favorite at the same time. Sorry for the cheese. I'll be back to my angry self in no time!!

pictures

I took the kids to have their pictures taken again by Carrie Steffe, EMA Photography. All three kids have colds so I felt bad dragging them to New Jersey on a dark rainy night. I did a short session since we did a big one last year. She did two poses of all three kids and one pose with Bennett. Bennett did not smile for his individual pictures and Nathan cried for the first five minutes we were there. She tried so hard to get him to smile but he just looked at her as if he wasn't so sure. Libby and Nathan were too preoccupied with the prizes they picked out. Libby picked out a whoopie cushion and Nathan picked out a lollipop! My very ladylike daughter!!

Bennett seems to be making a smooth transition to milk based formula. As soon as he is one year old we can switch to pediasure....sigh....I am so tired of the sickening sweet smell of pediasure but hopefully he will like it as much as Nathan. Doctors are always surprised that he not only tolerates it but loves the stuff. We have a "source" for about half of our pediasure supply for Nathan so hopefully she will keep being so kind!

No other news. I have tons of paperwork from Boston that was emailed to me last week. I have to sort through it all and start weighing the boys and tracking what they eat. All the information is overwhelming. I/We get so excited about treatment and then you see all that it requires for our boys. Putting these drugs in the boys bodies and putting them through all the tests...

Thank you so much for all of your continued prayers. We are really praying that we will be heading to Boston in January for baseline testing and medication.

Boston

Well, we thought we might be going to Boston in December for baseline testing for the boys but it looks like we won't be going until January. We were a little bummed but with Christmas and Bennett's birthday December will go quickly.

Just a side note regarding the subscription option on the left. I can not see anyone's email who subscribes so no worries if you wish to remain anonymous. All I can view is the number of people who have subscribed.

Dr Garg

I spoke with Dr. Garg today. He basically wanted to update us on their progress thus far. Of course he can only give limited information but he said the response from the cells to the medications was encouraging. He seems most encouraged by the FTI's. He said he has treated the boys cells as well as the two girls from Japan and he is waiting to hear from the older boy in New Zealand. Basically they are still looking at a one year time frame from this past August. They have to develop the clinical trial then review it with the drug company and of course the IRB. There will be tweaking along the way in order to have it approved. The one thing I did not like was that he seemed hesitant to treat Bennett due to his age. He also said they would most likely get the medication for one year and then be off of it for a year to determine if it is really effective. He also spoke to Livia unbeknownst to us and she told him that we had gone to Boston to meet with Dr. Leslie Gordon. I do not know what went on in that conversation so I will have to speak with Livia tomorrow. I told him that we are not trying to play one hospital off of another but we just want to find the best treatment for the boys. He said if they develop the clinical trial and we decide we don't want the boys to participate, that is no problem. It's weird because I feel like Dr. Garg's team is more needing of us whereas Boston would be doing us a favor, but we feel more comfortable with Boston if that makes sense. It's all so much to think about. I am anxious to hear from Boston and talk things over with Livia.

a bunch of little things.

We had a pretty good weekend. I have been in a bit of a funk about the boys. It seems to build and build little by little. Everything outside of our little world has such potential for pain. Little kids his age sliding on the floor at stores, crashing into things (not that that is good). Other kids Nathan's age are able to do so much more. Saturday he went to a birthday party. It was a cooking birthday party for one of his friends from school and he had a great time. When he got out of the car his legs were stiff and he wcouldn't walk. This got him off to a bad start but once he got settled in at the party, the true Nathan appeared and he was clapping along with the rest of the kids. He has a great personality for his condition because they forgot to cut everyones pizza so it could cool but somehow missed him. He spoke up right away! He is not to be overlooked! I just notice that kids that don't know him are starting to look at him longer, not really staring, just looking, looking away and then looking back at him. This is nothing that he would notice and probably not something other parents would notice but I am looking for it and unfortunately ready to challenge their gaze. I so appreciate the normal things that Nathan is invited too, the birthday parties and playdates. He had a playdate on Friday with his friend Julia and he was so so excited!

Some other stuff that built to my being in a funk is Nathan again saying that he wants to be a daddy when he grows up. Truly what am I supposed to say to this? I just go along with it for now. Another is the thought of the holidays coming up and being around alot of family and friends who had children close to and in between Bennett and Nathan. This always causes a lot of anxiety and pain for me. Also, something happened with Libby this week that made me fearful of when Nathan goes to school which will be in 1 1/2 years. She cut her thumb which opening a can the one night. She had a bandaid covering it and two spare bandaids in her backpack but somehow she managed to go through all three of those by the time recess rolled around! She said her friends didn't want to play with her because they said her thumb looked gross. Okay soooo if Libby is shunned for a cut on her finger what chance do my boys have at fitting in with their peers? Mark and I are hoping they will be off-limits in the teasing department. Maybe they will just be so different that it won't be cool to tease them.

I still am adjusting to the idea that Bennett is a repeat of Nathan. Everytime I see his neck getting stuck in a certain position just like Nathan's or when I see the back of his hair turing into the course hair like Nathan, I just am in disbelief. I feel like I tried to defy God when we got pregnant again. Like I just thought, 'I dare you to give me another child with the same thing' and he did! I honestly don't think I thought it was possible, as if I had reached some invisible ceiling on suffering. Sometimes I wonder what my boys would look like if they did not have this disorder. Sometimes I listen to Nathan's four year old chatter from another room and picture a typical little boy, a head taller, two sizes bigger........we will get there. I know we will.

Bennett had his 6 month review on Friday regarding his OT and PT. His OT will be increasing to twice monthly and his PT will continue at weekly. It is really nice that it is done at his school. It makes my life so much easier with scheduling. We are still trying to get new orthotics for Nathan. He (finally!) outgrew the old ones. I know Nathan is short but his feet also seem to be really small. He is in a 6 or 7 which is about 4 sizes lower than other kids his age. One of my friends recently bought her 1 year old almost the same size. Maybe I need to ask the physicians at Boston Childrens' Hospital if that is typical.

Speaking of Boston...we may be going up there in December to begin the intial testing for the boys. It may be the week of Christmas if everything goes as planned. Dr. Garg called from University of Texas (UTSW) and left messages on my cell phone and home phone on Friday. In his message he said "we have made considerable progress towards the clinical trial." I am not sure what that means. I was surprised to hear from him as we have never received a phone call from him. We will have to see what that is about. It was at 3 pm on Friday when I got the messages. I couldn't deal with drama at that time of the week so I have not called him back yet.

I think that is all the updates for now.

great article!

For parents of children with special needs, this is a great article. Obviously I am not as hmmm whats the word....evolved as the author. I am more stuck in the top half of the article but I hope to make it to the bottom someday. I still have moments in which I cannot believe that I am a part of this group, the special needs parents group. They occur less and less frequently but are no less dramatic. I am starting to realize this is the group to which I will always belong. Like I said, I am not evolved enough to be happy about that yet. I'm still thinking that a do over would be nice but I'm sure I will get there. Look how far I have come already.

The Little Bus by Carolyn Faust Piro

It seems like a few people have the majority of special needs kids! Why is it that some people have repeated trauma while others go through life relatively unscathed? I have always wondered that, even prior to infertility. Just by being in the field of social work I saw people who endured loss after loss and I wondered why.

New!

I added a subscription option so that people can receive an email whenever I update the blog! No more checking the blog to see if there is an update. You will know when you check your email! I know I am a little slow, but this was a big milestone for me. It took me over an hour to figure this out. I also got a domain name (you had to do that to get the feedburner) which is www.libbynathanandbennett.com. I think you can still go through this blogspot site for a while though because it is all google. Anyway, I am quite impressed with myself. Widgets, RSS feed, gadgets.....I still don't have a clue what it all means but I got it to work.

I am still so happy that Nathan does not have a skull fracture! I can not believe it. It has made me more relaxed knowing that a hematoma doesn't automatically mean a skull fracture. I emailed Dr. Gordon to tell her the good news. Her response was that they would do what they had to do to help our boys! Those are the most wonderful words I have heard in a long time!

I took video today of Libby and Nathan playing in the leaves. Mark made a huge pile at the bottom of the slide, Libby filled the slide with leaves and Nathan slid down the slide into the leaf pile. Libby had her microphone reporting..."As you can see here we have alot of leaves in Philadelphia. My brother Nathan is going to slide down the slide into the leaves." They did weather reports in school which is where she got the idea. It was so funny. I would try to put it on here but that subcription button was enough technology for me today.

Yayyyyy!

Thank you for your prayers. Nathan does not have a skull fracture! I thought when you had a hematoma that automatically had a skull fracture but apparently not. This is good news! So we intend to wrap Nathan and Bennett in bubble wrap until they can start on the medication. I was a hysterical mess earlier for no reason! Shocking!

we could use some prayers.....

I took Nathan and Bennett this morning for Bennett's flu shot which I'm so glad he was able to get. Nathan was going to the bathroom and when he pulled up his pants, he fell backwards hitting the back of his head on the tile floor of the bathroom. He was crying, I was hysterical, more hysterical than I have been in a while. I called Mark and told him I needed to take him to CHOP but then realized that sitting in the emergency room at CHOP for three hours was more than I could handle today. Not two weeks ago I spent an entire day at Dr. Lockman's and then at Abington with both boys getting a chest x-ray for Nathan. Today I just felt like I couldn't handle it. Plus Bennett has a cold so having him be exposed to all the germs down there just doesn't seem like a good idea.

So Mark said he can take him down after work today. If you recall, Dr. Gordon told us that the boys cannot start the trial if they have a fracture. I just spoke with her and she said that it could potentially be a problem but she suggested we wait and see. If he or Bennett suffer a fracture during the trial, they would just skip the biphosphinates for a period of three months.

I have been a wreck all day. I just love him so so much and I am tired of him going through all of this stuff. I am tired of him falling and getting hurt. I am tired of this disease/disorder causing such disruption in his little life. He is such a sweetie and doesn't deserve to be at the doctor or hospital so often. I am also tired of putting so much energy into accepting the appearance and developmental delays that my boys have and then something like this happens that really makes it tough.

So to the prayer......if you can all pray that Nathan does not have a skull fracture we would be most grateful. I will update you tonight. Thank you all so much!

more stuff that happened yesterday.....

So there was more to talk about from yesterday but I didn't have time to write about it this morning. When our box from PRF arrived several days ago, Libby asked what was inside. I told her it was for Nathan and Bennett, from the people who are going to treat them for their disorder. I opened the box and lying on top was a folder with numerous pictures of children with classic progeria. Libby instantly said, "Is that what Nathan and Bennett are going to look like?" I quickly sputtered something about them having something similar but not the same and that is the reason we are trying to get some medicine for them. So last night at dinner, Libby blurts out that Nathan is "going to look freaky when he grows up." The look on Nathan's face was sheer hurt. He said, "I'm not going to look freaky" in the saddest little voice. We started to reprimand her and then realized it could just be her way of expressing her anxiety. I asked her if she was just worried about that and she said that yes, she is just worried. It was an eye-opener. I guess it just happens little by little, this process of having Libby, Nathan and eventually Bennett understand the boys disorder. It stinks that we have to go through a similar process with Libby as she begins to understand adoption. I feel like being adopted would be enough to deal with and feel guilty that we have somehow burdened her further.

And onto another note.....I got my haircut today. It is really really short, too short. I asked for chin length and it is much shorter. Mark said he has never seen my hair so short. Anyway, this is about the kids so let me tell you what happened. I walked into Nathan's classroom for pick-up. He took one look at me and said, "What happened to your hair?" If you've ever seen Nathan he has slopey shoulders already and when he is dissappointed they go down even further. I explained that I got it cut and he started crying. He said he likes my long hair and made me promise to not get it cut off again. Poor guy. I certainly didn't mean to traumatize him!

GI

Yesterday was the GI appointment for both boys in King of Prussia. Dr. B was actually on time and when I commented on his promptness he said the 1:30PM time slot is the best one! So from now on, 1:30 and 2:00 will be our appointment time! He proceeded to disappear for 35 minutes while typing up his notes, but that is pretty typical of him. Nathan has not been very well behaved at appointments making it much more difficult. I guess it is just part of being four years old, but it has taken us by surprise. So the actual important information is that not much has changed. He was happy with Bennett's growth, 14 pounds, 15 ounces and 27 inches in height. His only recommendation for him was to try to slowly transition him to milk based formula then possibly on to Pediasure. I asked if we can add the duocal calorie powder to his baby food since he likes that so much and he said that would be fine. I did admit that we have given Bennett dairy from time to time in the form of ice cream. He increased his axid dosage to account for weight gain. He was less thrilled with Nathan's weight gain. Nathan weighed 25 pounds 6 ounces and was almost 36 inches in height. For Nathan he recommended stopping the appetite stimulant for a period of two weeks since Nathan's body seems to have adjusted to the dosage. Then we will resume in two weeks to determine it's effectiveness.

It is Mark's busy time so I went by myself, but it really was not that bad. It is tiring but nothing like the appointment at the Bone Health Clinic last week. Of course I wish we could go together for these appointments but it just doesn't make sense for Mark to take time off work to spend at the doctor office. If he is going to take time off from work I would much rather be doing something fun. One of the nurses asked Nathan where his Daddy was saying that he is usually with him. Nathan told her he was at work "wight Mom?" Mark doesn't know it yet, but he will have to take Nathan for routine bloodwork at Quest because that is something I can not handle.

Bennett is scheduled to have his second flu shot tomorrow. We are so glad he is getting it because they cancelled Libby's. Bennett has a cold though so I am hoping he can still get the shot. He has a snotty nose and cough but no fever or anything.

parent mtg, sibling group and PRF

We received our box of supplies from PRF (Progeria Research Foundation) in order to get set up with their weighing in program for the boys. The box is huge and includes a medical scale, a 5 pound weight for routine calibration and lots of paperwork for us to sign. I haven't even looked at the paperwork yet. We have been busy, not necessarily with important things though. Monday I took the boys out to my parents house to hang out, Monday night I went to the Phillies game and yesterday Libby had a playdate with two other girls from her school. Plus I have gone crazy and decided to take on some new crafting projects to sell on Etsy. Of course this is in addition to my Ebay store in which I sell clothing and my mini two-day a week job at Interac. I really shouldn't be adding any new hobbies but then I wouldn't be crazed half the time. Anyway, this blog is not about that so I will get back on track.

Last night at Nathan's school they had a support group for parents with children with disabilities. At the same time they have a sibling group for children 6 and above to discuss having siblings with special needs. I started to have doubts about sending Libby to the sibling group because I really don't know how much of a problem it is for her right now. If it is not an issue then why open a can of worms? I talked with the director and she said the group is pretty low key and Libby wanted to go. She loved it! She wants to go back which makes me really happy! She told Nathan she was going to a meeting to talk about how to deal with him and his special needs. Poor Nathan was quite confused.

I also loved the parent group. I know I talked too much but it was the first time I have been in that kind of setting where people would understand what I am feeling. I almost didn't go. I had been home from picking up the boys for only an hour and the thought of putting three kids back in the car and taking them back out in the cold is just not too inviting. I put a lot of effort into following through with activities that I tell the kids we are going to do which is what motivated me to get out of the house. I am so glad I did! There were maybe a dozen parents there. Several of the families had children with Cerebral Palsy and autism spectrum disorder. I was the only one with two children with special needs. Ding Ding Ding! I actually didn't win a prize. The one family is at the beginning stages of their journey, still trying to figure out a diagnosis, still trying to get the attention of the medical professionals. I felt so deeply for their situation because it is such a confusing and emotional time. I just wanted to take away the pain for the parent(s) because no one should have to deal with these challenges. It made me realize how far I have come in accepting our situation and being more comfortable with the label of being a family with special needs children. I'm still struggling of course, but looking back it has gotten better. Mark came at the end to help me with the kids. He sat in the parent group for only a few minutes so he didn't really get a feel for it. He does not feel the need to purge all of his thoughts and feelings like I do so this is not his cup of tea. One of the drawbacks of a social worker marrying an accountant I guess. Anyway, he is willing to go along with me to these groups if and when they occur in the future. I guess that will have to be enough for now although I feel guilty dragging him to something he does not enjoy. But hey, how much football do I endure watching on television?

Thats all for now. I have lots to do, not much time to do it and even less motivation. Nathan and Bennett have a GI appointment in King of Prussia today at 1:30 and 2pm. That reminds me, I didn't make arrangements for anyone to get Libby off the bus in case I don't make it back by 4:00pm. Hopefully I can make it, otherwise she can go to the neighbors house. Why do I think of these things three hours before appt time?