Really fast update...
We saw Dr. Benzick yesterday and that was fine. Nothing really new to report.
I had my support group meeting last night. It was really nice to sit with other parents who are going through similar things. Alex thought it was SO cool to eat dinner at church and he loved going to "Sunday school". He wants to go to church everyday!
Today was our Physical Therapy Evaluation. They decide that Alex definitely needs physical therapy. He is able to do most of the gross motor skills he should be able to do, but cannot do "enough" of them and he doesn't do them "correctly". Because he is low tone and isn't very strong he tries to compensate and do them in ways that use the least amount of muscle. We are going to do PT once a week. We are excited b/c every other week will be in the pool.
That's all for now.
Ali
Alex and Maddy
Thursday, March 27, 2008
Tuesday, March 25, 2008
Here is my update...It has not been a great day. I accessed Alex's port, but it did not go as easily as we had hoped. He is still swollen aound the site so it was hard to feel where the access point was. But we did get it done.
I got a call from Dr. K today. There was a mistake and Alex's muscle biopsy never got sent to the lab. A resident was supposed to take it to the pathologist with paperwork. He took it to the pathologist, but didn't leave the paperwork so it never got sent to the lab. Luckily, they have the muscle. It was transferred today and they are putting a rush on it. We should have the results next week. So at least I can stop worrying about why it isn't back.
Ali
I got a call from Dr. K today. There was a mistake and Alex's muscle biopsy never got sent to the lab. A resident was supposed to take it to the pathologist with paperwork. He took it to the pathologist, but didn't leave the paperwork so it never got sent to the lab. Luckily, they have the muscle. It was transferred today and they are putting a rush on it. We should have the results next week. So at least I can stop worrying about why it isn't back.
Ali
We have had a really good week! Alex has been feeling pretty good. He loved Easter! He had so much fun on our Easter Egg Treasure Hunt and the basket at the end. The Easter Bunny was very good to Alex. He got lots of geotrax train stuff and matchbox pop-ups. He has been playing away.
Yesterday was our second week with our "new" therapist. He did GREAT! Alex and I both liked Emily more this week. He had a smile on his face for most of the session. He was able to do more then I have seen him do in a long time. There is a really big difference in his strength and energy when he is feeling good. It doesn't sound like much compared to "normal" kids, but to us it was huge! Alex was able to jump on a trampoline for about 1 1/2 min of the 2 min he was supposed to, do 10 sit ups, hold on and swing on a bolster swing while it was going crazy, and climb a slide 3 times using a rope to help. I was really proud of him!
Say a prayer for My nerves and hands to be steady today! I have to access Alex's port for the first time. I'm not sure which one of us is more nervous. Our medical supply company has to "check off" that I can do it and we have an appt with Dr. Benzick tomorrow to draw blood, get an immunization and have a checkup. Wednesday night we are heading to church for my first meeting with the support group I asked for. We will have dinner with other church families and Alex will go to "Sunday School" while I have my meeting. Thursday we have an evaluation with a physical Therapist. Our first visit to Houston, Dr. Koenig said she thought Alex needed PT. I didn't really want to add anything else. BUT, last week one of the first things the therapist said was, "Does he do physical therapy too?" She also thought we really need it. So thus the evaluation on Thursday! So we have a pretty busy week!
The only two down things...I still don't have a nurse. Miss Heather was supposed to start last Tuesday. She never came and no one has heard from her since! Very weird. The agency is looking for someone else, but I am frustrated b/c I really need some me time! Also, When we were in Houston 2 weeks ago, Dr. Koenig had the biopsy reports for the other 2 boys who had biopsies the same day as Alex. We STILL don't have Alex's back. It has been really hard for me to be patient. At this point we don't know why Alex's is taking so much longer. It could be it got lost in the shuffle or it could be that they found something unexpected. Dr. K has been in contact with me, but it is just a really hard place to be in. I would be okay if we were all waiting, but I just don't know what to think at this point. I am also waiting to hear what, if anything, the endocrinologist wants us to do about Alex's blood sugars. So after 3.5 years of waiting, the answers seem so close, but I am waiting again. I feel as if I will have a sense of peace when I know WHAT is wrong with Alex.
Before I go... I ask that you pray for a good friend of ours. I have been talking to Jen for about 6 months now and we met Jen and Landon on our first trip to Houston. They are the nicest family. Landon now has a confirmed mitochondrial disorder. Landon's lungs are affected by the mito, he has the flu and is in the hospital. He is struggling to breathe. Please pray that his lungs hold out and that Jen and James stay strong during this time. Here is there website: www.caringbridge.org/visit/landonweber. You will be amazed at some of the pictures. He looks quite a bit like my little buggy!
Ali
Yesterday was our second week with our "new" therapist. He did GREAT! Alex and I both liked Emily more this week. He had a smile on his face for most of the session. He was able to do more then I have seen him do in a long time. There is a really big difference in his strength and energy when he is feeling good. It doesn't sound like much compared to "normal" kids, but to us it was huge! Alex was able to jump on a trampoline for about 1 1/2 min of the 2 min he was supposed to, do 10 sit ups, hold on and swing on a bolster swing while it was going crazy, and climb a slide 3 times using a rope to help. I was really proud of him!
Say a prayer for My nerves and hands to be steady today! I have to access Alex's port for the first time. I'm not sure which one of us is more nervous. Our medical supply company has to "check off" that I can do it and we have an appt with Dr. Benzick tomorrow to draw blood, get an immunization and have a checkup. Wednesday night we are heading to church for my first meeting with the support group I asked for. We will have dinner with other church families and Alex will go to "Sunday School" while I have my meeting. Thursday we have an evaluation with a physical Therapist. Our first visit to Houston, Dr. Koenig said she thought Alex needed PT. I didn't really want to add anything else. BUT, last week one of the first things the therapist said was, "Does he do physical therapy too?" She also thought we really need it. So thus the evaluation on Thursday! So we have a pretty busy week!
The only two down things...I still don't have a nurse. Miss Heather was supposed to start last Tuesday. She never came and no one has heard from her since! Very weird. The agency is looking for someone else, but I am frustrated b/c I really need some me time! Also, When we were in Houston 2 weeks ago, Dr. Koenig had the biopsy reports for the other 2 boys who had biopsies the same day as Alex. We STILL don't have Alex's back. It has been really hard for me to be patient. At this point we don't know why Alex's is taking so much longer. It could be it got lost in the shuffle or it could be that they found something unexpected. Dr. K has been in contact with me, but it is just a really hard place to be in. I would be okay if we were all waiting, but I just don't know what to think at this point. I am also waiting to hear what, if anything, the endocrinologist wants us to do about Alex's blood sugars. So after 3.5 years of waiting, the answers seem so close, but I am waiting again. I feel as if I will have a sense of peace when I know WHAT is wrong with Alex.
Before I go... I ask that you pray for a good friend of ours. I have been talking to Jen for about 6 months now and we met Jen and Landon on our first trip to Houston. They are the nicest family. Landon now has a confirmed mitochondrial disorder. Landon's lungs are affected by the mito, he has the flu and is in the hospital. He is struggling to breathe. Please pray that his lungs hold out and that Jen and James stay strong during this time. Here is there website: www.caringbridge.org/visit/landonweber. You will be amazed at some of the pictures. He looks quite a bit like my little buggy!
Ali
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