I'm considering starting a separate blog just for updates on Bryce's condition, but have not yet decided for sure so, for today I will just add it all here. It's going to be a long one I'm sure. So much is going on right now, it's hard to decide where to start. Well, as you can see from the picture, Bryce has gotten his AFO's...Ankle, Foot Orthosis. So far he is doing pretty well with them. He has had a couple of times while sleeping with these on that his legs have cramped up pretty badly and so I have to ask about that when we go back. It appears to be very painful when it happens. We are still waiting on his SWASH. The company first ordered the wrong one, and then when the right one came in, a piece was missing, so we continue to wait. We are also still waiting on his HI/LOW chair that will help support him while eating, playing, etc. It's so hard to wait when your child is struggling so much! I've contacted the company many times and if for no other reason, you would think they would move things along just to get me off their backs. Oh well, tomorrow begins another week!
We have been accepted into CRS...Children's Rehabilitative Services at St. Joe's hospital in Phoenix. He now sees Dr. Aleck (Geneticist), Dr. Narayanan (neurologist), a pediatrician, and an orthopedic doctor there. I think that is all for now. He has also been referred to the Wheelchair clinic through CRS. We have our first appointment with them in Aug.
The end of June we had a good long visit with Dr. Aleck and Dr. Narayanan. We have seen Dr. Narayanan before, but this was our first visit with Dr. Aleck. Unfortunately the new team had nothing new to offer. Dr. Aleck confirmed that it is a form of leukodystrophy that he has. So I guess for now that is the diagnosis. It's a pretty broad diagnosis...kind of like saying he is a boy, more specific than just a person, but not by much. He has been tested for basically all of the known types of leukodystrophy, but we were told that 60% of children with leukodystophy go undiagnosed any further because there is just so little known about this disorder. Not a lot of research has been done. I guess for years these children have been misdiagnosed with things like Muscular dystrophy, Cerebral Palsy, etc. So I guess Bryce actually could have something that is not yet named...weird huh?! Also leukodystrophy is a genetic disorder so that is a little concerning with Annalise and all, however Dr. Aleck (the geneticist) said that considering we have 3 children without any symptoms of it at all and no past family history of anything like this, it is possible that John and I did not pass it on, but that it has begun spontaneously in Bryce. Again, weird huh?! =) So hopefully, we will not have other children with this condition, but who knows at this point. Sure makes me thankful that we have had at least 3 healthy children so far. Here is a link that explains a little more about leukodystrophy for anyone who is interested. http://en.wikipedia.org/wiki/Leukodystrophy
In June Bryce also had another MRI and EMG. The EMG was still completely normal and the report from PCH is that the MRI was stable, no new abnormalities, so that is good news.
Bryce also continues to lose weight. In June we met again with Dr. McOmber a Gastroenterologist. Bryce is going to have to get a feeding tube. =( We spent a month trying everything to help him gain weight...adding fats and calories to his current foods, night feedings, etc. and when we went in he had lost another 2 ounces. He is just 21 pounds now. It just makes me sick! However, we really feel that this is the best and actually only way to really make sure he is getting the nutrition that he needs, so we are doing it. This Tuesday he will be admitted to the hospital for a PH probe and 24 hrs of preliminary testing/ monitoring and then on Friday the 24th of July he will receive the G-tube.
Bryce's mind continues to appear mostly unaffected by his condition. Although unable to speak, he appears to understand what we are saying and he is very aware of what is going on around him. This is a huge blessing, but makes life very frustrating for Bryce. It's like he is a two and a half year old with all the wants and desires of a two year old, stuck in a three month old's body. He wants to run outside and wrestle with his brothers, he wants to feed himself, he wants to play, but his body just won't let him do that. He gets tired so easily. It has been one year ago this month since he began to regress. Just one year ago he was able to stand, crawl, talk, feed himself, and play on his own. We continue to hope and pray that he will one day be able to do these things again!
We have been accepted into CRS...Children's Rehabilitative Services at St. Joe's hospital in Phoenix. He now sees Dr. Aleck (Geneticist), Dr. Narayanan (neurologist), a pediatrician, and an orthopedic doctor there. I think that is all for now. He has also been referred to the Wheelchair clinic through CRS. We have our first appointment with them in Aug.
The end of June we had a good long visit with Dr. Aleck and Dr. Narayanan. We have seen Dr. Narayanan before, but this was our first visit with Dr. Aleck. Unfortunately the new team had nothing new to offer. Dr. Aleck confirmed that it is a form of leukodystrophy that he has. So I guess for now that is the diagnosis. It's a pretty broad diagnosis...kind of like saying he is a boy, more specific than just a person, but not by much. He has been tested for basically all of the known types of leukodystrophy, but we were told that 60% of children with leukodystophy go undiagnosed any further because there is just so little known about this disorder. Not a lot of research has been done. I guess for years these children have been misdiagnosed with things like Muscular dystrophy, Cerebral Palsy, etc. So I guess Bryce actually could have something that is not yet named...weird huh?! Also leukodystrophy is a genetic disorder so that is a little concerning with Annalise and all, however Dr. Aleck (the geneticist) said that considering we have 3 children without any symptoms of it at all and no past family history of anything like this, it is possible that John and I did not pass it on, but that it has begun spontaneously in Bryce. Again, weird huh?! =) So hopefully, we will not have other children with this condition, but who knows at this point. Sure makes me thankful that we have had at least 3 healthy children so far. Here is a link that explains a little more about leukodystrophy for anyone who is interested. http://en.wikipedia.org/wiki/Leukodystrophy
In June Bryce also had another MRI and EMG. The EMG was still completely normal and the report from PCH is that the MRI was stable, no new abnormalities, so that is good news.
Bryce also continues to lose weight. In June we met again with Dr. McOmber a Gastroenterologist. Bryce is going to have to get a feeding tube. =( We spent a month trying everything to help him gain weight...adding fats and calories to his current foods, night feedings, etc. and when we went in he had lost another 2 ounces. He is just 21 pounds now. It just makes me sick! However, we really feel that this is the best and actually only way to really make sure he is getting the nutrition that he needs, so we are doing it. This Tuesday he will be admitted to the hospital for a PH probe and 24 hrs of preliminary testing/ monitoring and then on Friday the 24th of July he will receive the G-tube.
Bryce's mind continues to appear mostly unaffected by his condition. Although unable to speak, he appears to understand what we are saying and he is very aware of what is going on around him. This is a huge blessing, but makes life very frustrating for Bryce. It's like he is a two and a half year old with all the wants and desires of a two year old, stuck in a three month old's body. He wants to run outside and wrestle with his brothers, he wants to feed himself, he wants to play, but his body just won't let him do that. He gets tired so easily. It has been one year ago this month since he began to regress. Just one year ago he was able to stand, crawl, talk, feed himself, and play on his own. We continue to hope and pray that he will one day be able to do these things again!
2 comments:
Although I want to write so many words of sympathy, I know that isn't what you need. You are so strong and obviously capable of not only getting through what Heavenly father knew you could carry, but carrying it with grace.
What a beautiful comment from Lulu. Tammy and John you are in my prayers. I hope all is going well with your baby. Our thoughts (and prayers) are with Bryce.
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