So I am feeling sad these days. Depression is a bummer. It slows you down so much and it is an effort to do everything. It started when I was looking at Nathan and noticed all of the veins in his head. He is looking more and more like a child with progeria (to me-I'm sure Mark would argue). Soon he will look like all the other children with progeria rather than a combination of me and Mark. I think the other thing is that Fall sports are all in full swing and I am sad that neither of my boys will play sports. They will be sitting out at gym class and not playing football on the playground. They will not be members of the boys club. Who will they hang out with?
Next it occurred to me that Bennett is 9 months old and has accomplished only rolling over both ways. Libby was pulling up at this age and he should be too.
Then I was looking at some old video that Mark downloaded to our computer. The clips that were prior to the pregnancy with Bennett were interesting. We were going through a difficult time with Nathan then too, but so much more painful stuff has occured since then. We didn't even know that was possible!
Then I had a client who brought her 12 month old niece with her today and she walked and moved better than Nathan (and probably wore the same size clothes). Plus we are going to the mountains this weekend and I can't help but remember that last year at this time we were hopeful of having a typical baby born full-term. Now instead of balancing out our family, our two special needs kids define our family.
Speaking of typical babies, I don't know how I can ever feel good again without having a redo of the baby thing. I know I have to because having another child is not an option, but when I see little kids like I saw this morning, I want a chance to experience that again, those normal developmental milestones, sitting, crawling, teeth, running, jumping, losing teeth....... I know it won't change my pain of not having matching children but maybe it would help me heal a little bit. If Nathan and Bennett were restored to normal health at this very minute, all would be good and I don't think I would have the desire to have another one. But this treatment is not a cure. I have to keep reminding myself of that. It is not a cure, but is merely a possible way of slowing down the progression. Really? Is that what we are doing this for?
When I go out with Bennett, everyone fusses about how cute he is! I mean everyone takes notice, of his hair, his eyes and his cheeks! It is so difficult to hear that and enjoy it because strangers have no idea what is going on with our family. They have no idea that his soft curly hair will soon become brittle, dry and break off. They have no idea that he will soon no longer "pass" for a typical baby. Yesterday someone asked how old he is and when I said 9 months she said "oh he'll be walking soon!" No, no he won't.
I don't know why it makes me so sad that none of our children will look like us. As I see other people's children grow into their teenage years and adulthood, the resemblances to their parents becomes even more apparent. It hurts every time I take notice. Seeing how cute Bennett is makes me think we would have had some cute kids. Yes, yes I know Nathan is cute and Libby is beautiful but you know what I mean.
9.29.2009
9.26.2009
Bennett
He is just so so cute and I can't believe he will change. Not that Nathan is not cute, but you all know what I mean. Bennett still looks like any other baby if you don't see his little legs. He is so handsome! Maybe this treatment would stop the progression. I know it is not a cure, but I keep thinking it will be make everything better.
By the way, regarding my last post. I was so anxious for something to happen. I can't even find out how our cells are doing in Texas, if they have been treated, if they are growing and answers to lots of other questions. The Boston news came just at the right time. It has only been three and a half months since the official diagnosis. It seems like it has been at least 6 if not more. I just looked over top of my computer and asked Mark how long it has been since we received the official diagnosis. His response: "at least 6 months."
By the way, regarding my last post. I was so anxious for something to happen. I can't even find out how our cells are doing in Texas, if they have been treated, if they are growing and answers to lots of other questions. The Boston news came just at the right time. It has only been three and a half months since the official diagnosis. It seems like it has been at least 6 if not more. I just looked over top of my computer and asked Mark how long it has been since we received the official diagnosis. His response: "at least 6 months."
9.25.2009
More Boston...
We are going to Boston!! After adjusting to the idea that it is very soon, we are excited that it is so soon! October 15th is the date. Previously we wanted to make our Boston trip a little adventure; however, we would have to pull Libby out of school for the day. She is already missing one day next month because we are going to the mountains with my sister and her family. For a moment we considered skipping the mountains trip but then we decided we needed the relaxation. Plus we are thinking positively that we will be returning to Boston and can make it a family trip another time. My parents are coming down to watch Libby. I'm so glad because my mom and Libby get along very well. Since Libby will be in school all day, maybe I'll get some sewing projects or painting projects ready for her. Honestly, she likes being busy! She does not have access to the internet so the projects will be a surprise! Anyway, very happy news this morning and we are very hopeful that it will be a great and productive meeting with Dr. Miller at 9am and Dr. Gordon at 11am!
9.23.2009
Boston
Livia called last night and spoke with Mark. This is the summary that I received from him. The Boston doctor, Dr. Miller is the physician actually conducting the clinical trials at PRF. Because Dr. Gordon's son has progeria, it would be a conflict of interest for her to be involved. So, Dr. Miller would like to see us. It sounds like it would be similar to our Texas experience. Livia is working on coordinating that visit.
Dr. Ahmad responded after I emailed him a second time. He did not respond to the initial email because he does not have answers. In the second email I asked about prematurity and about the other family in New Zealand. He said they have birth information on three other children with MAD and only one of them was born prematurely. He also said they would contact the family in New Zealand to see if they would be willing to have contact with us. I know it has been a month since we were there, but I'm sure that kind of stuff is not a priority on their to do list. He has no information on the growth or condition of the cells and no answer as to the possibility of using the medications off-label. After talking about going to Boston, it feels like we are cheating on them or something, but we did tell them we were going to pursue both.
Nathan and Bennett had their well-baby check-ups today, Nathan 4yr and Bennett 9 months (I think we missed the 6th month) He could only see Nathan because we were 10 minutes late. We had an appointment last monday. Mark scheduled it so it wasn't even on my mind. I thought it was in October, so I was surprised to get the telephone call that we missed the appointment. Anyway, I was so upset at the time and felt terrible. I guess today when I was late, they were already annoyed with me. So now I have to take Bennett back on October 6th at 3:50. I hope they are running on time!! Everyone would have been proud of me. I didn't flip out even though I wanted to yell that I have often waited for more than hour to be seen. Anyway, Nathan weighed 25 pounds and measured 35.5 inches. There was nothing else remarkable. Dr. Lockman was really concerned about the results of the DEXA scan. Mark was able to schedule an appointment with Dr. Barsky from the Bone Health Clinic for the end of October. I am nervous about the results of the Dexa scan too. It was a pretty big drop and from what I have read, 2.5 standard deviations below the norm is significant. We have to get these boys some treatment!!
Dr. Ahmad responded after I emailed him a second time. He did not respond to the initial email because he does not have answers. In the second email I asked about prematurity and about the other family in New Zealand. He said they have birth information on three other children with MAD and only one of them was born prematurely. He also said they would contact the family in New Zealand to see if they would be willing to have contact with us. I know it has been a month since we were there, but I'm sure that kind of stuff is not a priority on their to do list. He has no information on the growth or condition of the cells and no answer as to the possibility of using the medications off-label. After talking about going to Boston, it feels like we are cheating on them or something, but we did tell them we were going to pursue both.
Nathan and Bennett had their well-baby check-ups today, Nathan 4yr and Bennett 9 months (I think we missed the 6th month) He could only see Nathan because we were 10 minutes late. We had an appointment last monday. Mark scheduled it so it wasn't even on my mind. I thought it was in October, so I was surprised to get the telephone call that we missed the appointment. Anyway, I was so upset at the time and felt terrible. I guess today when I was late, they were already annoyed with me. So now I have to take Bennett back on October 6th at 3:50. I hope they are running on time!! Everyone would have been proud of me. I didn't flip out even though I wanted to yell that I have often waited for more than hour to be seen. Anyway, Nathan weighed 25 pounds and measured 35.5 inches. There was nothing else remarkable. Dr. Lockman was really concerned about the results of the DEXA scan. Mark was able to schedule an appointment with Dr. Barsky from the Bone Health Clinic for the end of October. I am nervous about the results of the Dexa scan too. It was a pretty big drop and from what I have read, 2.5 standard deviations below the norm is significant. We have to get these boys some treatment!!
9.22.2009
Cover of Parade magazine
No, we are not on it, but Dr. Francis Collins is on the front. He is the doctor who developed the human genome project. Don't worry I don't know what it is exactly either but it has something to do with the boys. He is in Baltimore MD and was supposed to be treating the boys cells with the three medications. I'm not sure if that is going to happen or if they are being treated at UTSW.
No telephone call from Boston today. We never nailed down an exact time. I told her I could talk between 1PM and 4PM and I never heard back from her so I'm not sure what happened. I feel like I take one step forward and two back. I sent a second email to Dr. Ahmad and still no response. Perhaps email is not the way to communicate. It is the easiest for me but obviously not getting the responses that I need. I was really looking forward to talking with Dr. Gordon and I'm dissappointed.
No telephone call from Boston today. We never nailed down an exact time. I told her I could talk between 1PM and 4PM and I never heard back from her so I'm not sure what happened. I feel like I take one step forward and two back. I sent a second email to Dr. Ahmad and still no response. Perhaps email is not the way to communicate. It is the easiest for me but obviously not getting the responses that I need. I was really looking forward to talking with Dr. Gordon and I'm dissappointed.
9.20.2009
A response!
Dr. Gordon from PRF responded to my email and said she would be happy to talk with me over the telephone on Tuesday. I said I would love to talk to her and asked that it be in the afternoon when I can be home and without children. I am waiting to hear back from her on what time works for her. Please pray that I am able to get some answers as to the possibility of treatment sooner than one year. Her son has progeria and she started PRF. In 10 years they have identified the gene and started clinical trials with medication so she is a woman of action! I just hope I can be so delightful that she can't resist bringing us up there and treating the boys.
I guess I have not noticed how far the gap is between Nathan and his peers. One of the neighbor kids was over hear the other day. He is 3 1/2 and runs like crazy, jumps and even jumped off our fourth step onto the ground. Nathan can't even walk down those steps without help and can't jump off one step. It made me sad watching them. Libby and her friend and the 3 1/2 year old would be playing in the back. They would run around to the front and Nathan would slowly make his way to the front. By the time he got there, they would be on to some other area. Eventually he gave up and played by himself. The impact of his physical disabilities on his social and emotional development is beginning to worry me. I just worry that he is not going to be able to do what little boys do.
Nathan also got his first pair of crocs thanks to Meemaw Falcone. I am always sad when I see little kids in crocs because Nathan cannot wear them because he is so unstable and his feet are so narrow. Well, he has to wear socks but he is doing alright in them. He certainly loves them, especially because the holes are Mickey Mouse ears. I'm a nervous wreck! Maybe I could write to Croc and have them make a special pair of narrow Crocs that would fit him better!
I guess I have not noticed how far the gap is between Nathan and his peers. One of the neighbor kids was over hear the other day. He is 3 1/2 and runs like crazy, jumps and even jumped off our fourth step onto the ground. Nathan can't even walk down those steps without help and can't jump off one step. It made me sad watching them. Libby and her friend and the 3 1/2 year old would be playing in the back. They would run around to the front and Nathan would slowly make his way to the front. By the time he got there, they would be on to some other area. Eventually he gave up and played by himself. The impact of his physical disabilities on his social and emotional development is beginning to worry me. I just worry that he is not going to be able to do what little boys do.
Nathan also got his first pair of crocs thanks to Meemaw Falcone. I am always sad when I see little kids in crocs because Nathan cannot wear them because he is so unstable and his feet are so narrow. Well, he has to wear socks but he is doing alright in them. He certainly loves them, especially because the holes are Mickey Mouse ears. I'm a nervous wreck! Maybe I could write to Croc and have them make a special pair of narrow Crocs that would fit him better!
9.17.2009
Letter to Dr. Ahmad
So this is the email I sent to Dr. Ahmad in Texas. He works with Dr. Garg and has a three year old son himself. I know it sounds desperate, unprofessional and disjointed but that is how I am feeling sometimes. I am hoping that he responds. Sometimes I consider driving up to Boston and knocking on the door of PRF, demanding that someone help us. I know that will not produce results any faster. Sometimes I just worry that we are not being aggressive or assertive enough. Maybe we should not be taking "no" or "wait" for an answer. Maybe we should be calling every day until we get treatment for them. My Dad always said "the squeaky wheel gets the grease." And yes, he was referring to me when my sister Donna felt overlooked because she was a good kid. But then I realize that throwing ourselves on the floor and crying is not going to get results.
Dr. Ahmad
I am looking for an update on the cells, how they are growing, when they will be treated. I am an emotional wreck over here knowing what Dr. Garg it will most likely be a year until treatment would begin for the boys. I'm sure that Dr. Garg doesn't want to use the drugs off label for the boys because he wants to be able to provide solid evidence that the treatment is effective etc. but with two children is there any chance he would be willing to begin treatment with one of the boys off-label while approval through IRB happens? Perhaps too it would be helpful if you could give me in an email, a list of the steps needed to get to the point of treatment so we aren't feeling totally lost. I know we discussed it but perhaps I need in writing, wait for cells to grow, treat cells with A B and C.....That would be really helpful. I know I am sounding crazed, but please understand that my sons have a horrible condition and there is something out there with the potential to treat them. Unfortunately we cannot get access.
thank you Phyllis Falcone
Nathan is still going potty like a big boy. We are sooo proud of him! He is proud of himself too and so is Libby. My concern at the moment is the back of his head. To me it seems like the soft spot is getting bigger. Not just bigger because his head is growing bigger, but bigger in proportion to his head. The other thing that concerns me about this is that Bennett's wormian bones were not present at birth or at 3 months. It worries me that this spot is growing in both boys. Hopefully I am just being crazy neurotic. That would be nice.
Libby is having difficulty in school with focus and attention as well as grasping the academic concepts. She is requiring alot of one on one support from the teacher. We had contemplated holding her back but felt it would really hurt her self esteem. Although we still believe she belongs in first grade, it is time to have her evaluated through the school for learning disabilities and privately to determine the contributing factors. In addition to always being hyper, distracted, difficulty focusing, short attention span and impulsive, she has always suffered from anxiety. The symptoms overlap so much it is difficult to sort through them. She does seem to be settling in and she loves 1st grade and her teacher. Her teacher is very sweet, calm and gentle which is great for Libby who is rather sensitive. It just adds to the crazyness though, trying to schedule the evaluation, communication with the teacher and working with Libby at home. And it's another thing for me to worry about. I think that some of the professionals we have talked to about this consider it to be a result of our situation at home. Although I understand that the stress at home makes it worse, I think it plays a smaller role than what people think. It cannot all be attributed to our "situation." These symptoms have been present since she was one year old. We felt like we were handling it and thought we would address it if/when it affected her academics. The timing happened to coincide with the other stuff that is going on with our family and unfortunately that stuff will not be going away anytime soon.
Dr. Ahmad
I am looking for an update on the cells, how they are growing, when they will be treated. I am an emotional wreck over here knowing what Dr. Garg it will most likely be a year until treatment would begin for the boys. I'm sure that Dr. Garg doesn't want to use the drugs off label for the boys because he wants to be able to provide solid evidence that the treatment is effective etc. but with two children is there any chance he would be willing to begin treatment with one of the boys off-label while approval through IRB happens? Perhaps too it would be helpful if you could give me in an email, a list of the steps needed to get to the point of treatment so we aren't feeling totally lost. I know we discussed it but perhaps I need in writing, wait for cells to grow, treat cells with A B and C.....That would be really helpful. I know I am sounding crazed, but please understand that my sons have a horrible condition and there is something out there with the potential to treat them. Unfortunately we cannot get access.
thank you Phyllis Falcone
Nathan is still going potty like a big boy. We are sooo proud of him! He is proud of himself too and so is Libby. My concern at the moment is the back of his head. To me it seems like the soft spot is getting bigger. Not just bigger because his head is growing bigger, but bigger in proportion to his head. The other thing that concerns me about this is that Bennett's wormian bones were not present at birth or at 3 months. It worries me that this spot is growing in both boys. Hopefully I am just being crazy neurotic. That would be nice.
Libby is having difficulty in school with focus and attention as well as grasping the academic concepts. She is requiring alot of one on one support from the teacher. We had contemplated holding her back but felt it would really hurt her self esteem. Although we still believe she belongs in first grade, it is time to have her evaluated through the school for learning disabilities and privately to determine the contributing factors. In addition to always being hyper, distracted, difficulty focusing, short attention span and impulsive, she has always suffered from anxiety. The symptoms overlap so much it is difficult to sort through them. She does seem to be settling in and she loves 1st grade and her teacher. Her teacher is very sweet, calm and gentle which is great for Libby who is rather sensitive. It just adds to the crazyness though, trying to schedule the evaluation, communication with the teacher and working with Libby at home. And it's another thing for me to worry about. I think that some of the professionals we have talked to about this consider it to be a result of our situation at home. Although I understand that the stress at home makes it worse, I think it plays a smaller role than what people think. It cannot all be attributed to our "situation." These symptoms have been present since she was one year old. We felt like we were handling it and thought we would address it if/when it affected her academics. The timing happened to coincide with the other stuff that is going on with our family and unfortunately that stuff will not be going away anytime soon.
9.15.2009
Off to work
Today is my first day back at work. It is time to go back and be busy. Plus I have run out of drug rep pens. I am nervous. I hope people don't feel uncomfortable around me. I might have to institute a no hugging policy. It may cause me to let down my guard and cry.
Did you ever have a dream and while you are dreaming you know you are having a bad dream and you try to wake yourself in order to escape? I have had that happen on several occasions in my life, desparately trying to wake up knowing it wasn't real. Then last night I dreamt that the boys had a fatal disorder. I tried and tried to wake up because I just knew it was a bad dream. I finally got myself awake and realized it is true. What a strange experience.
Did you ever have a dream and while you are dreaming you know you are having a bad dream and you try to wake yourself in order to escape? I have had that happen on several occasions in my life, desparately trying to wake up knowing it wasn't real. Then last night I dreamt that the boys had a fatal disorder. I tried and tried to wake up because I just knew it was a bad dream. I finally got myself awake and realized it is true. What a strange experience.
9.13.2009
Potty Trained!
Well, Nathan is potty trained! He is doing very well and can even get the stool to get up to the potty himself. This did come at a cost though, namely naps. One day he was fussing about taking a nap and I happened to throw out that he could skip naps when he is potty trained. He is so excited about this now so it looks like I lost a two to three hour break in my day!! Oh well. I think at various times we also threw out a trip to the circus, a birthday party at the fire station, swimming in the big pool (pool is now closed) a ride on the Strasburg Railroad, a fire truck bed (not happening), a pedal tractor (we have that!) and possibly other things I can't remember. Thankfully the one he has focused on is very doable. The other downside is that his pants stay up even less now. Today I was sadly washing fall pants that are size 18 months, for a 4 year old!!! Anyway, it is very cute. He looks adorable in his little undies. It's so funny to hear us ask and Nathan say that he has to go potty. I'm sure the next time I'm out shopping with him and he has to go, I won't find it so amusing but oh well!
Despite the majorly big step forward, I had a crappy weekend. For some reason I was in a funk about the boys. All the little boys at the Phillies game on Friday night bothered me a little bit, especially the babies. On Saturday morning I was waiting in line for a rummage sale and I saw a little boy roughhousing with his father. For some reason that simple thing put me in a funk for the rest of the weekend. I wonder if Mark is ever going to be able to do that with Nathan and Bennett. The thing is, it's not even that big of a deal! I guess just that it is a normal part of childhood and an important part of the father/son relationship. Are the boys going to be fragile forever? I would hate for that to be the case, no moon bounce at parties, no racing or they might fall and hurt themselves and no wrestling with other kids. I tend to focus on the things the boys might not be able to do instead of what they can do. I guess because almost every other kid we see has all these abilities. They are such every day activities. That is why I like having the boys in school. When pick up the kids, I often pass the adults with special needs waiting in the lobby to be picked up by paratransit. Most of them are cognitively impaired, confined to wheelchairs etc. I realize how lucky we are that Nathan can walk and talk and interact with us.
I guess what never fails to get me wallowing is that the parents with adoptive children are a minority. Parents with children with special needs are few. But parents with both special needs and adoption issues are virtually non-existent. I guess that is what always gets to me. Yes, Libby is a typically developing kid but we still have adoption issues. Nathan and Bennett are our biological children which is wonderful, but they have all these physical issues and shortened life span. Sometimes I wonder if Bennett did not have this disorder, would that have provided the normalcy to our family that I have been seeking. Who knows. That's easy to say in hindsight. It's not good to wonder I guess. I do think that Bennett was born in order to finally obtain a diagnosis for Nathan. Dr. Zackai said it was seeing Nathan again that caused her to consider MAD but it just seems like if Bennett had not been born with this disorder, Nathan's diagnosis would have been a mystery for much longer.
Livia called on Friday just wanting to find out how about our Texas trip. I told her I had not heard from Leslie Gordon. I also told her that Dr. Garg said it will most likely be a year until the boys receive treatment. She seemed surprised and said that he must not be willing to use the medication off-label. I'm so clueless so I didn't realize this was the reason. I'm so confused by all the information. I should record these conversations so I can go back over them and get the details. I keep saying that but don't follow through. I then had an epiphany! What if one of the boys participates in the research study and the other receives the medication sooner, off label? I can't believe we are discussing this but what if one of them were able to receive treatment sooner rather than later wouldn't that be a good idea? I guess it's a Sophie's Choice of which one would receive the treatment off label and which one would wait for the research study. If anyone would actually go for it in the first place.
Despite the majorly big step forward, I had a crappy weekend. For some reason I was in a funk about the boys. All the little boys at the Phillies game on Friday night bothered me a little bit, especially the babies. On Saturday morning I was waiting in line for a rummage sale and I saw a little boy roughhousing with his father. For some reason that simple thing put me in a funk for the rest of the weekend. I wonder if Mark is ever going to be able to do that with Nathan and Bennett. The thing is, it's not even that big of a deal! I guess just that it is a normal part of childhood and an important part of the father/son relationship. Are the boys going to be fragile forever? I would hate for that to be the case, no moon bounce at parties, no racing or they might fall and hurt themselves and no wrestling with other kids. I tend to focus on the things the boys might not be able to do instead of what they can do. I guess because almost every other kid we see has all these abilities. They are such every day activities. That is why I like having the boys in school. When pick up the kids, I often pass the adults with special needs waiting in the lobby to be picked up by paratransit. Most of them are cognitively impaired, confined to wheelchairs etc. I realize how lucky we are that Nathan can walk and talk and interact with us.
I guess what never fails to get me wallowing is that the parents with adoptive children are a minority. Parents with children with special needs are few. But parents with both special needs and adoption issues are virtually non-existent. I guess that is what always gets to me. Yes, Libby is a typically developing kid but we still have adoption issues. Nathan and Bennett are our biological children which is wonderful, but they have all these physical issues and shortened life span. Sometimes I wonder if Bennett did not have this disorder, would that have provided the normalcy to our family that I have been seeking. Who knows. That's easy to say in hindsight. It's not good to wonder I guess. I do think that Bennett was born in order to finally obtain a diagnosis for Nathan. Dr. Zackai said it was seeing Nathan again that caused her to consider MAD but it just seems like if Bennett had not been born with this disorder, Nathan's diagnosis would have been a mystery for much longer.
Livia called on Friday just wanting to find out how about our Texas trip. I told her I had not heard from Leslie Gordon. I also told her that Dr. Garg said it will most likely be a year until the boys receive treatment. She seemed surprised and said that he must not be willing to use the medication off-label. I'm so clueless so I didn't realize this was the reason. I'm so confused by all the information. I should record these conversations so I can go back over them and get the details. I keep saying that but don't follow through. I then had an epiphany! What if one of the boys participates in the research study and the other receives the medication sooner, off label? I can't believe we are discussing this but what if one of them were able to receive treatment sooner rather than later wouldn't that be a good idea? I guess it's a Sophie's Choice of which one would receive the treatment off label and which one would wait for the research study. If anyone would actually go for it in the first place.
9.11.2009
Big Boy Underwear!!
So Nathan is wearing big boy underwear today! We will see how it goes! He peed in the potty this morning, standing up and was so pleased with himself. Yes, I had to lysol the entire toilet area but I didn't mind. Hopefully we are turning a corner with this potty training thing.
9.10.2009
Sick Boy
Nathan is sick today. He has a slight fever and cold. Bennett had it earlier in the week and it didn't seem to be too bad so hopefully he will get over it quickly. Ahh the joys of daycare.
I haven't heard back from the director of PRF yet. Believe me I am checking email even more feverishly than usual. I also have not heard back from a mom of a little boy with progeria. She actually emailed me after seeing a post I put up on Yahoo. I responded with a plethera of questions regarding teeth, gross motor delays, medical problems etc. It's possible that I scared her. Her family has done alot of fundraising for PRF which amazes me. I can't imagine dealing with the kids and holding events that raise thousands of dollars. That's impressive.
I haven't heard back from the director of PRF yet. Believe me I am checking email even more feverishly than usual. I also have not heard back from a mom of a little boy with progeria. She actually emailed me after seeing a post I put up on Yahoo. I responded with a plethera of questions regarding teeth, gross motor delays, medical problems etc. It's possible that I scared her. Her family has done alot of fundraising for PRF which amazes me. I can't imagine dealing with the kids and holding events that raise thousands of dollars. That's impressive.
9.09.2009
Nothing yet from Boston
Well, I have not heard back yet from the director of the PRF. I guess I will wait a few days until I bother her again. Several people have joked that we should go on Oprah or Dr. Phil. Actually one of Mark's very nice cousins sent general information to Dr. Phil's show and they followed up with questions that I answered and submitted about a week ago. I'm not sure if Dr. Phil is the right venue for us as he typically works with families who are having some kind of self-made conflict or problem. Mark and I do not need marital intervention, at least not yet and to be honest, I feel like we are handling this pretty well. Not to say there is not room for improvement. At this point I would welcome any kind of publicity aside from the Tyra Banks show or Jerry Springer. It would be a neat experience for the kids to see the behind the scenes of a television show.
Also at this point I can safely assume we will eventually apply for Make A Wish foundation. Might as well embrace this stuff rather than fight it even though I am bummed that our boys would qualify for such a program. I'm sure we will wait until they are older to make sure it is really a wish they want. Nathan has a crush on Taylor Swift right now which is hilarious. He loves her music and saw her singing on television at the CMT festival. Mark noticed he was mesmerized and ask if he liked her. Nathan smiled the most devilish smile and said "yea-She's pretty. I love her." and then he ended up in tears because we were laughing so hard. Anyway, maybe he would want to see her. He also loves Mickey Mouse though. Actually I think Nathan would love to travel to Italy and/or Greece and Mark, I mean Bennett really wants to go to Las Vegas!
I was talking to a lady yesterday while Nathan and her kid were playing on some rides together at the mall. She commented on the boys being so small so I told her their diagnosis. She was so sweet and had heard of proferia before. We talked for a little while about our families and the boys diagnosis. Her final comment was "Well good things come in small packages!" and then she went on her merry way. I wish the pain and loss could be summed up so easily. It also struck me that for a moment she felt my pain as much as she could. We kind of shared it for a moment but she was able to walk away. I of course cannot.
This interaction also reminded me that I have to stop classifying all moms into a group of people that I perceive as better than me. I'm not talking about moms that I know. Its kind of like Bridget Jones Diary when she described the married people as "smug marrieds." I have to realize and remember that we are all the same. We are all moms trying to do the best for our kids. We have the same daily battles and issues, I just have a few extra things on my plate. They did not do anything better than me in order to be blessed with healthy biological children. I am not less of a mom than them. Maybe this misconception comes from my fear that other mothers are are looking down on me or thinking, oh that poor woman. I guess if I see myself as one of them instead of on the opposite side of the fence, they will see me that way too. I know I'm rambling. I'm not sure if any of this is making sense. Hmmmm, maybe this is how Dr. Phil can help?? Of course I would ask that he do it without making me look bad on national television.
Also at this point I can safely assume we will eventually apply for Make A Wish foundation. Might as well embrace this stuff rather than fight it even though I am bummed that our boys would qualify for such a program. I'm sure we will wait until they are older to make sure it is really a wish they want. Nathan has a crush on Taylor Swift right now which is hilarious. He loves her music and saw her singing on television at the CMT festival. Mark noticed he was mesmerized and ask if he liked her. Nathan smiled the most devilish smile and said "yea-She's pretty. I love her." and then he ended up in tears because we were laughing so hard. Anyway, maybe he would want to see her. He also loves Mickey Mouse though. Actually I think Nathan would love to travel to Italy and/or Greece and Mark, I mean Bennett really wants to go to Las Vegas!
I was talking to a lady yesterday while Nathan and her kid were playing on some rides together at the mall. She commented on the boys being so small so I told her their diagnosis. She was so sweet and had heard of proferia before. We talked for a little while about our families and the boys diagnosis. Her final comment was "Well good things come in small packages!" and then she went on her merry way. I wish the pain and loss could be summed up so easily. It also struck me that for a moment she felt my pain as much as she could. We kind of shared it for a moment but she was able to walk away. I of course cannot.
This interaction also reminded me that I have to stop classifying all moms into a group of people that I perceive as better than me. I'm not talking about moms that I know. Its kind of like Bridget Jones Diary when she described the married people as "smug marrieds." I have to realize and remember that we are all the same. We are all moms trying to do the best for our kids. We have the same daily battles and issues, I just have a few extra things on my plate. They did not do anything better than me in order to be blessed with healthy biological children. I am not less of a mom than them. Maybe this misconception comes from my fear that other mothers are are looking down on me or thinking, oh that poor woman. I guess if I see myself as one of them instead of on the opposite side of the fence, they will see me that way too. I know I'm rambling. I'm not sure if any of this is making sense. Hmmmm, maybe this is how Dr. Phil can help?? Of course I would ask that he do it without making me look bad on national television.
9.08.2009
nothing much
Well, we are surviving over here. Nothing much new and exciting. The boys survived their first week at school. I cried dropping Bennett off; however, the most difficult is leaving Nathan when he doesn't want to stay. I know it is a normal part of development but I have such a hard time leaving a crying child who doesn't want me to leave. Bennett was so happy both days when he saw me. He was even happy to see his physical therapist, Miss Cindy.
I often check the Progeria Research Foundation and there is an interesting update regarding the clinical trial. I am glad my kids do not have classic progeria but yet I feel like an outsider sometimes, lurking around their site and wishing they would accept our boys for a clinical trial now. I did email the director last week asking if they could help us. The current update on their site indicates that the clinical trial will move right into the next clinical trial with all three medications for the children with progeria. They indicate that the children will not have to miss a dose of medication in between. I know I am reading into things, but that sounds good to me. Why else would they want to continue treatment uninterupted unless it produced some kind of positive change? It may be minimal, but it must be something right?
I often check the Progeria Research Foundation and there is an interesting update regarding the clinical trial. I am glad my kids do not have classic progeria but yet I feel like an outsider sometimes, lurking around their site and wishing they would accept our boys for a clinical trial now. I did email the director last week asking if they could help us. The current update on their site indicates that the clinical trial will move right into the next clinical trial with all three medications for the children with progeria. They indicate that the children will not have to miss a dose of medication in between. I know I am reading into things, but that sounds good to me. Why else would they want to continue treatment uninterupted unless it produced some kind of positive change? It may be minimal, but it must be something right?
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