We had a really great Christmas weekend and today I am sad to see Mark go back to work. I suspect that he is secretly anxious to get away from this chaos but he will be home with the kids tomorrow while I am working for the day.
So Christmas was great aside from one Zhu Zhu pet incident and me being in a bit of a funk. Christmas morning I got really down about putting my 1 year old in 3-6 month clothes and my four year old in an 18-24 month outfit. I guess it didn't help that there were quite a few babies at the Christmas Eve service. I was feeling very negative by the time we went out to my sister's house. It is sometimes difficult time seeing my nephews. They are all growing up with girlfriends etc. and it makes me wonder what the future holds for my boys. It is strange how my perspective changes from one day to the next.
If you are not familiar with Zhu Zhu pets they are toy hamsters with wheels. They have a sticker on the bottom that warns not to put them near your hair and I am pretty sure we told Libby not to do so. She put one up to her hair, it immediately got caught up in her hair. To say that she freaked out is an understatment. Eventually we had to cut a little bit of her hair (with Mark's new Cutco scissors) and some of her hair remains entangled in 'Pipsqueak's' wheels. Bennett loved the hamsters. We put one on the floor in front of him and every time it came towards him, his whole body and arms shook with excitement. I'll have to try to get it on video because it was hilarious!
Saturday morning Nathan got some kind of stomach bug. He threw up several times but never a lot (sorry for the details). He laid around until about 10:30 when he perked up a little bit. We were able to go out to my parents house to see my sister Donna who came up from Virginia. It is the first time all of us have been together in a long time so I was glad Nathan recovered enough to go. Seeing my six month old niece was good. Yes, she is a typical baby which is difficult but in the back of my mind I am hoping this treatment will allow Bennett to catch up with her at some point. It's so strange seeing them side by side. Allison is not sitting up but can lay on her belly with her head up and put weight on both arms or even play with a toy with one arm and support herself with one arm. Bennett can sit up but when on his belly his head is on the carpet! Anyway, I held it together and it was actually a better day than Christmas day for me.
We received a Wii for Christmas from Memaw and Pop Pop Falcone! We spent Sunday enjoying lots of games including Zingo (a fun version of Bingo), Guess Who, Boggle, Wii Tennis and Wii Bowling. It was really fun!
12.25.2009
Merry Christmas!!
Bennett is enjoying his first Christmas at home. He is sitting in the middle of the mess of toys, paper and boxes from the big kids. He got some sippy cups, bowls with suction on the bottom so he can feed himself and some toys I found at the thrift store. He doesn't really need anything but obviously if we had to get him some stuff because of Nathan and Libby. Nathan got lots of Mickey Mouse stuff from Santa-his favorite is the plush Mickey. He also got some transformers, a big Buzz Lightyear and Zingo. Libby got two Zhu Zhu pets, Polly Pockets, Littlest Pet Shop stuff and some art/drawing supplies. She loves to draw. We also got a Wii from Mee Maw and Pop Pop Falcone. I'm a little sad today about the typical baby thing. I don't know why. Maybe it is because by this time Bennett should at least be crawling and pulling up but he is still sitting and occasionally falling over. It doesn't help that I am very tired, wrapping until 12:00 and up at 6:00 is rough. I am much more optimistic on 8 hours of sleep!
12.18.2009
Getting older
Okay, I know two posts in one day......I just have to ask a question. Nathan said again today that he is going to be a Daddy when he grows up "Wight?" What am I supposed to say? I said yes and I really believe he will be. Please don't think I am crazy. In the back of my mind I wonder if I am being irresponsible and not being honest with him. He is getting older and understands more. He will be hearing the word progeria when we go to Boston next month. How much do we tell him and when? For the most part Libby and Nathan (obviously Bennett) have no idea what is going on and how different we are as a family. What happens when that bubble bursts and Libby begins to notice people looking at her brothers or when Nathan begins to realize that he is much different than his friends. I guess it won't be gradual but I wish we could protect them from the pain of sticking out like a sore thumb. I am still holding out hope that we will not have to face that reality. I just have a feeling deep in my soul that my boys will get better, not cured, but better. Yes kids, your mommy may be in denial but it is my happy place right now.
Progeria
I just turned on the documentary I had recorded from TLC called "6 Going On 60" about two little girls with Progeria. I have been waiting to watch so that I can force Mark to watch it with me but that has not happened yet. I was going through the DVR list for a Mickey Mouse for Nathan and just decided to take a peak. Nathan saw the little girl, Kaylee and said, "Hey that looks like me! And she talks like me too!" Oh my gosh. My heart is breaking. I remember when Nathan was little and I was looking at the Progeria website (as I did many times over the years). Libby asked if one of the pictures of the little boys was Nathan. It just makes me sad. Not sad like you would expect, that they have progeria, but sad that their appearence is defined by this disorder. Sad that he looks like other people because of these common features. I know how I see people with physical differences and I hate that people see my boys in that way. I don't know if I am making any sense. I just want him to look like Nathan and not like a kid with progeria. I'm so sad.
We are still trying to work out the details for our first trip to Boston. We will be flying up on a Sunday and staying for the week. The problem is that the week we are scheduled to go is the busiest time at Mark's job. It is the week he closes things out from the month prior and with the end of the year he will be responsible for end of the year tasks as well. Obviously Boston is more important and he will go if he has too, but he spoke with Dr. Gordon about possibly shifting things around. He needs to keep up with his job responsibilities too so it is a tough situation. We will hopefully know by the end of the day today.
We are still trying to work out the details for our first trip to Boston. We will be flying up on a Sunday and staying for the week. The problem is that the week we are scheduled to go is the busiest time at Mark's job. It is the week he closes things out from the month prior and with the end of the year he will be responsible for end of the year tasks as well. Obviously Boston is more important and he will go if he has too, but he spoke with Dr. Gordon about possibly shifting things around. He needs to keep up with his job responsibilities too so it is a tough situation. We will hopefully know by the end of the day today.
12.15.2009
Bennett's birthday
I feel bad that I didn't post any pictures from Bennett's first birthday on Monday. I've been busy just like everyone else this time of year and have not had chance. We had a great day. Mark's parents and Aunt Andrea/Uncle Jeff came over for dinner and then we had ice cream cake. The pictures are kind of random and not the greatest quality. I didn't use my good camera. Sitting in his bumbo, you can really see how small he is compared to other one year olds. That is Aunt Andrea with Bennett. As you can see it was difficult keeping the cake away from him until we finished singing and took pictures. Equally as difficult was getting a picture of Bennett without Libby! Oh well!
I still can't believe we are in the study. If the IRB had decided they should not be allowed to participate, I would have been devestated. This is just the perfect scenario for us. We can chase down the dream of treatment without going broke! How lucky are we!!! Don't stop praying now. Keep praying that the medication will help Bennett and Nathan grow bigger and stronger and loosen up that tight skin and joints so that they can be more like typcial kids their age. Maybe I sound crazy but I really think we will see some changes.
I spoke with Livia on Monday to tell her the good news. She was so excited she said she was tearing up! She said it was the best news all day! It was wonderful to hear her so excited about the prospect of treatment for the boys. She is going to talk to Dr. Garg for us and told me not to worry. I am so glad we have her and Dr. Zackai to advocate for us.
12.12.2009
We are in!!!
We are in!! The IRB approved the addendum that will allow Bennett and Nathan to participate in the clinical trial with the Progeria Research Foundation!
So here is the story in summary (summary does not mean short of course):
After our visit to PRF (Progeria Research Foundation) in Boston, the team agreed to treat the boys with the two medications, zolodronate and prevastatin. The boys would not be able to get the third drug (FTI) that is currently being used in the triple drug clinical trial for children with classic progeria. After our visit, Dr. Zackai spoke with Dr. Leslie Gordon on the telephone and Dr. Gordon agreed to officially include Nathan and Bennett in the PRF triple drug trial. This involved petitioning the Institutional Review Board (IRB). Well we learned yesterday from Dr. Gordon that it was approved by the IRB!! This is the best possible development by far! The boys will be getting all three medications starting next month! This is AWESOME!!! The benefits (aside from the medication) are that most of our expenses would be covered because we are participating in a government approved study rather than being treated on the side. In addition, I would assume they would be followed more closely too. It involves week long visits annually and 3-day visits at 18 months and 2 years and charting food intake and weight at home. The boys are not the only ones in the study with non-classic progeria; however, they are the only ones in the study who do not have a mutation involving a gene other than the LMNA. We are so excited that this is moving so quickly! Some doubts creep in when I think about Dr. Garg because he is studying our boys specific gene mutation. I hope we are are not passing up something better just to do something quicker, but this just feels right. I guess with any decision of this magnitude, the doubts will be present. I also assume that Dr. Garg will continue his studies and if any developments occur in say, 5 years, we could participate. It's a great time to have a genetic disorder because this field is moving so rapidly!
So we have lots of paperwork to complete requiring telephone calls, bloodwork and more. It's a bit overwhelming when I think of it all. Any broken bones would complicate things so here's hoping we can keep them safe for the next month! Nathan falls at least three times a week so it may be difficult. This week it was once on the driveway on his head, once in the house in his socks and just now in the bathroom on his arm. Yikes!
I told Dr. Gordon I was expecting her call yesterday but when it was almost 5pm I started to have doubts. She was surprised and said she herself had just found out. I just had a feeling and for once my feeling was right! I screamed when she told me!! I am really trying to just be excited about this and not worry about all the other stuff. If I go into all the other stuff here, I will start worrying so I won't. This is a dream come true and I will enjoy it! Who would have ever thought that since being diagnosed in June, we could move so quickly to experimental treatments!
Thank you so much for all your prayers and support! I appreciate you all tuning in for my pity parties and celebrating our successes. Dr. Gordon said we are great advocates for the boys which made me so happy. It is nice when your efforts are recognized even though it doesn't feel like an effort when it is your kids.
So here is the story in summary (summary does not mean short of course):
After our visit to PRF (Progeria Research Foundation) in Boston, the team agreed to treat the boys with the two medications, zolodronate and prevastatin. The boys would not be able to get the third drug (FTI) that is currently being used in the triple drug clinical trial for children with classic progeria. After our visit, Dr. Zackai spoke with Dr. Leslie Gordon on the telephone and Dr. Gordon agreed to officially include Nathan and Bennett in the PRF triple drug trial. This involved petitioning the Institutional Review Board (IRB). Well we learned yesterday from Dr. Gordon that it was approved by the IRB!! This is the best possible development by far! The boys will be getting all three medications starting next month! This is AWESOME!!! The benefits (aside from the medication) are that most of our expenses would be covered because we are participating in a government approved study rather than being treated on the side. In addition, I would assume they would be followed more closely too. It involves week long visits annually and 3-day visits at 18 months and 2 years and charting food intake and weight at home. The boys are not the only ones in the study with non-classic progeria; however, they are the only ones in the study who do not have a mutation involving a gene other than the LMNA. We are so excited that this is moving so quickly! Some doubts creep in when I think about Dr. Garg because he is studying our boys specific gene mutation. I hope we are are not passing up something better just to do something quicker, but this just feels right. I guess with any decision of this magnitude, the doubts will be present. I also assume that Dr. Garg will continue his studies and if any developments occur in say, 5 years, we could participate. It's a great time to have a genetic disorder because this field is moving so rapidly!
So we have lots of paperwork to complete requiring telephone calls, bloodwork and more. It's a bit overwhelming when I think of it all. Any broken bones would complicate things so here's hoping we can keep them safe for the next month! Nathan falls at least three times a week so it may be difficult. This week it was once on the driveway on his head, once in the house in his socks and just now in the bathroom on his arm. Yikes!
I told Dr. Gordon I was expecting her call yesterday but when it was almost 5pm I started to have doubts. She was surprised and said she herself had just found out. I just had a feeling and for once my feeling was right! I screamed when she told me!! I am really trying to just be excited about this and not worry about all the other stuff. If I go into all the other stuff here, I will start worrying so I won't. This is a dream come true and I will enjoy it! Who would have ever thought that since being diagnosed in June, we could move so quickly to experimental treatments!
Thank you so much for all your prayers and support! I appreciate you all tuning in for my pity parties and celebrating our successes. Dr. Gordon said we are great advocates for the boys which made me so happy. It is nice when your efforts are recognized even though it doesn't feel like an effort when it is your kids.
12.11.2009
First Birthday
I think it is Bennett's first birthday that is kicking my butt. Maybe we could push it back until his due date, but then I would probably just be upset because he wouldn't be doing much more. His range of motion is just so limited and he still won't put any weight on his arms. It is just such a milestone and I still can't believe we have two children with this disorder. When I am happy, it is when I am ignoring all the signs and symptoms, not thinking about other kids his age and not thinking about all the stuff Nathan should be doing. Mark tells me I can't think about it all the time. I agree but I don't know if if is healthy to just pretend it doesn't exist either.
One of the big things that I am anxious to have happen in the new year is for Nathan to be able to walk up and down the steps without assistance. That would be huge! Life is so much easier with Libby in that way. We can ask her to go get her pj's or run upstairs and brush her teeth. When we have playdates he should be able to play upstairs with the other kids. I will be praying for that in the new year.
Also in the new year we are hoping for successful treatment for the boys. I cannot give up hope on that just because things are not happening as quickly as I would like. I have so much paperwork to complete for Boston that will help us get started as soon as everything else is in place. I am hoping for some more good news soon from there. But then when I think about that it just brings on a whole other set of concerns, all the time off from home, work and school it will require of us, putting our boys through the pain and discomfort and possible side effects of the medication. Some of the side effects occur in less than one percent of patients but to be honest, less than 1 percent means nothing to us. Sorry for the negativity on this Friday morning. I will buck up I'm sure. I buck up what seems like a million times a day when I think, hear and see all the little things that remind me that my boys are not the same as other children. I am supposed to be concluding, but this just popped into my head. Take for example the task of picking out Christmas cards online. Who would think that has the potential for one of those sad moments? But as I scroll through the cards I see no other families that look like ours. Our kids are not the kind of kids you put on display to sell things! There are many more incidences like these every day. I'll be back when I am feeling better and can be more positive. Thanks for listening. These blogs help me so much. I guess I wouldn't even have to publish them. Maybe I shouldn't be sending them out into the great big internet world. Maybe I should keep more of these thoughts, feelings and self-doubts to myself.
One of the big things that I am anxious to have happen in the new year is for Nathan to be able to walk up and down the steps without assistance. That would be huge! Life is so much easier with Libby in that way. We can ask her to go get her pj's or run upstairs and brush her teeth. When we have playdates he should be able to play upstairs with the other kids. I will be praying for that in the new year.
Also in the new year we are hoping for successful treatment for the boys. I cannot give up hope on that just because things are not happening as quickly as I would like. I have so much paperwork to complete for Boston that will help us get started as soon as everything else is in place. I am hoping for some more good news soon from there. But then when I think about that it just brings on a whole other set of concerns, all the time off from home, work and school it will require of us, putting our boys through the pain and discomfort and possible side effects of the medication. Some of the side effects occur in less than one percent of patients but to be honest, less than 1 percent means nothing to us. Sorry for the negativity on this Friday morning. I will buck up I'm sure. I buck up what seems like a million times a day when I think, hear and see all the little things that remind me that my boys are not the same as other children. I am supposed to be concluding, but this just popped into my head. Take for example the task of picking out Christmas cards online. Who would think that has the potential for one of those sad moments? But as I scroll through the cards I see no other families that look like ours. Our kids are not the kind of kids you put on display to sell things! There are many more incidences like these every day. I'll be back when I am feeling better and can be more positive. Thanks for listening. These blogs help me so much. I guess I wouldn't even have to publish them. Maybe I shouldn't be sending them out into the great big internet world. Maybe I should keep more of these thoughts, feelings and self-doubts to myself.
12.09.2009
My niece..
Well we are gearing up for the holidays. Most of our shopping is done, which is a great feeling considering last year at this time I was in the hospital. Bennett's birthday is on Monday which should be a reason to celebrate, but for me it is somewhat painful. Once again I have a baby who's birthday should not be for another two months. Once again I have a one year old who doesn't crawl, pull up to a stand or cruise. Once again we will celebrate a first birthday and the guest of honor cannot eat his own birthday cake because he has no teeth. The first time around was difficult. The second time around is just unbearable. Oh how I ache for a typical, bouncing, crawling, cruising baby. Speaking of which.....
I am nervous about meeting my neice, Allison who is five months old. I'm sure she has that baby flexibility that we have never seen with Nathan or Bennett. I'm sure she is the same size as Bennett. To see those little legs that do not have the stretched shiny tight skin will be so hard. It will be so painful to see her and know that she is healthy and will continue to get big and strong. Don't get me wrong, I am glad my sister (and everyone else I know) has healthy babies and kids. It is just a reminder that we do not. We have only been able to experience that joy once, 6 years ago with Libby and since then it has been overshadowed by all the difficulties with our boys. I so wish we could have another chance but we can't. So hopefully with time this will become less painful. That is something that I can't imagine right now. It feels like it will be with me forever.
I am nervous about meeting my neice, Allison who is five months old. I'm sure she has that baby flexibility that we have never seen with Nathan or Bennett. I'm sure she is the same size as Bennett. To see those little legs that do not have the stretched shiny tight skin will be so hard. It will be so painful to see her and know that she is healthy and will continue to get big and strong. Don't get me wrong, I am glad my sister (and everyone else I know) has healthy babies and kids. It is just a reminder that we do not. We have only been able to experience that joy once, 6 years ago with Libby and since then it has been overshadowed by all the difficulties with our boys. I so wish we could have another chance but we can't. So hopefully with time this will become less painful. That is something that I can't imagine right now. It feels like it will be with me forever.
12.02.2009
More on the accident, Libby's concert and party tricks...
So, more about the accident. I just am so grateful that it happened the way it did. It is such a great reminder about buckling the kids properly, making sure the clasp is in the right place etc. I appreciate that annoying beep that makes me buckle my seatbelt each time I get in the car. It also reminded me to pay more attention on the road. The down-side is that I am now even more of a nervous wreck, if that is possible. Yesterday the nurse at UCP called to say that Nathan fell down and hit his head. He seems fine but it was just another one of those "make your heart skip a beat" type things. Then she called today regarding some paperwork and I answered in a panicked "what happened?"
Another downside to the accident was that Mark was unable to come home early on Tuesday night to go with me to the parent support group and sibling group at UCP. I loved it last month but didn't feel like I had the energy to pack up all three kids again and go. There was really no reason I couldn't have driven my broken car half a mile home on Monday, I just felt like I needed him to be there. (Libby wanted him there too-they are tight!)
Also, a funny tidbit I forgot to mention. The policewoman spoke to Libby to gather some information while I was trying to reach Mark (long story). When I spoke to the officer she had notes from her interview with Libby which said "Libby 6 March 17th Nathan 4" and "Bennett 0" I just thought that was so cute. You should have seen her standing there with her brothers, in charge for the moment.
Today Libby had her school concert. I had completely forgotten about it and would have missed it had I not received an email on Tuesday regarding parking. I feel like I am always a few steps behind. Libby was cute. It was quite a battle to get her in a dress and tights. Well, those tights gave her a problem the whole concert and she spent most of the time trying to fix what was apparently a wedgie. Of course due to her short stature she was in the front row. Oh well. She was really nervous so I still don't know how she did that talent show in the spring! It's like she was a different child!
On to party tricks....our little Bennett has a few party tricks. First of all he gives hugs which he has been doing for a while. You have to put him right up to your neck and he wraps his little arms around your neck so tightly! A few days ago he began waving. If you are not his mother you might not recognize it as waving. He's still trying to figure it out, moving the wrist around and the hand goes up and down. He was waving to a couple moms across the aisle today at the concert which was really cute. His final trick is if you ask him how Casey goes (our cat) he does a high pitch squeal! It's also very cute and now when he sees Casey he makes the noise.
Another downside to the accident was that Mark was unable to come home early on Tuesday night to go with me to the parent support group and sibling group at UCP. I loved it last month but didn't feel like I had the energy to pack up all three kids again and go. There was really no reason I couldn't have driven my broken car half a mile home on Monday, I just felt like I needed him to be there. (Libby wanted him there too-they are tight!)
Also, a funny tidbit I forgot to mention. The policewoman spoke to Libby to gather some information while I was trying to reach Mark (long story). When I spoke to the officer she had notes from her interview with Libby which said "Libby 6 March 17th Nathan 4" and "Bennett 0" I just thought that was so cute. You should have seen her standing there with her brothers, in charge for the moment.
Today Libby had her school concert. I had completely forgotten about it and would have missed it had I not received an email on Tuesday regarding parking. I feel like I am always a few steps behind. Libby was cute. It was quite a battle to get her in a dress and tights. Well, those tights gave her a problem the whole concert and she spent most of the time trying to fix what was apparently a wedgie. Of course due to her short stature she was in the front row. Oh well. She was really nervous so I still don't know how she did that talent show in the spring! It's like she was a different child!
On to party tricks....our little Bennett has a few party tricks. First of all he gives hugs which he has been doing for a while. You have to put him right up to your neck and he wraps his little arms around your neck so tightly! A few days ago he began waving. If you are not his mother you might not recognize it as waving. He's still trying to figure it out, moving the wrist around and the hand goes up and down. He was waving to a couple moms across the aisle today at the concert which was really cute. His final trick is if you ask him how Casey goes (our cat) he does a high pitch squeal! It's also very cute and now when he sees Casey he makes the noise.
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