| 10:13 PM |
Sammy NIH trip #2 |
It's nice when Sam's blog doesn't need to be updated because he has been doing relatively well.
For the past year and a half he has been plagued with nuisance infections like thrush, various ear infections and skin rashes, but he has only been hospitalized once for pneumonia. With his syndrome he has soft bones and broke his collar bone about a year ago. I found out it was broken 2 week later when I noticed a bump (callus) forming. The doctor told me that a callus forms when the bone begins to heal. He also has a high pain tolerance. All I could think of was about 2 weeks previous he had woken up from a nap sobbing. I gave him Ibuprofen as is my rule for him, but that was all he got; Ibuprofen after his nap for 2 days. It takes him longer to heal in general so even after a year his callus remains.
Here he is on his flight with Steve headed to Maryland. That iPad is sure worth it!
Sam was so wired while we were there: running all over and tripping as he went, climbing all over and then flopping out of our arms when we'd pick him up. We had a 5 minute tag team going most of the time. 5 minutes was all we could handle at one time.
But he was AMAZING when he needed to be. He held still when they were taking his blood, even though they had to try twice. He cried, but the kid held still!
He sat perfectly still while the technician fitted him in a chair for a panoramic tooth x-ray. He had to hold on to a bar while biting down on a specific spot, while his head was held in place by 2 bars. I thought he might freak out, but the kid held still.
And finally when he needed to hold completely still for a CT of his lungs, he did so with flying colors. Remember that in between all these tests he was off-the-wall! I was so impressed with his willingness to do what was required of him.
The tests they ran turned out well. They gave us the go-ahead to let him try milk again, a substance he shows a positive for allergy. Apparently allergy to milk is a IgE response, so in a kid who has Hyper IgE's its inconclusive to do a blood allergy test.
The CT of his lungs looked really good. He has healed from almost all of the damage done by his pneumonias!
We learned that the NIH are learning more about Job Syndrome through their studies. The new things are good to know, but also depressing. I don't like to think about all the things Sammy is prone to. The best way to manage is to just take it 1 day at a time. We tackle what currently affects him and let go of the worry of 'could happen'. Each day I asses Sam as to how he is doing and what types of activities he will be able to participate in. It's all done mentally and I don't report to anyone, but it happens all the same. Each night I asses again, using the otoscope or thermometer as needed. His life to me seems fairly normal and I do my best to make it feel normal to him.
Here Sam is playing at the Children's Inn we stayed at, it's across from the hospital.
After a long day we went into DC to see a few sites. Everything was closed but we are still glad we at least walked around. There were so many joggers at night, I'm sure we had 50 go past us on our walk. Here we are in front of the Washington Monument.
For the past year and a half he has been plagued with nuisance infections like thrush, various ear infections and skin rashes, but he has only been hospitalized once for pneumonia. With his syndrome he has soft bones and broke his collar bone about a year ago. I found out it was broken 2 week later when I noticed a bump (callus) forming. The doctor told me that a callus forms when the bone begins to heal. He also has a high pain tolerance. All I could think of was about 2 weeks previous he had woken up from a nap sobbing. I gave him Ibuprofen as is my rule for him, but that was all he got; Ibuprofen after his nap for 2 days. It takes him longer to heal in general so even after a year his callus remains.
Here he is on his flight with Steve headed to Maryland. That iPad is sure worth it!Sam was so wired while we were there: running all over and tripping as he went, climbing all over and then flopping out of our arms when we'd pick him up. We had a 5 minute tag team going most of the time. 5 minutes was all we could handle at one time.
But he was AMAZING when he needed to be. He held still when they were taking his blood, even though they had to try twice. He cried, but the kid held still!
He sat perfectly still while the technician fitted him in a chair for a panoramic tooth x-ray. He had to hold on to a bar while biting down on a specific spot, while his head was held in place by 2 bars. I thought he might freak out, but the kid held still.
And finally when he needed to hold completely still for a CT of his lungs, he did so with flying colors. Remember that in between all these tests he was off-the-wall! I was so impressed with his willingness to do what was required of him.
The tests they ran turned out well. They gave us the go-ahead to let him try milk again, a substance he shows a positive for allergy. Apparently allergy to milk is a IgE response, so in a kid who has Hyper IgE's its inconclusive to do a blood allergy test.
The CT of his lungs looked really good. He has healed from almost all of the damage done by his pneumonias!
We learned that the NIH are learning more about Job Syndrome through their studies. The new things are good to know, but also depressing. I don't like to think about all the things Sammy is prone to. The best way to manage is to just take it 1 day at a time. We tackle what currently affects him and let go of the worry of 'could happen'. Each day I asses Sam as to how he is doing and what types of activities he will be able to participate in. It's all done mentally and I don't report to anyone, but it happens all the same. Each night I asses again, using the otoscope or thermometer as needed. His life to me seems fairly normal and I do my best to make it feel normal to him.
Here Sam is playing at the Children's Inn we stayed at, it's across from the hospital.
After a long day we went into DC to see a few sites. Everything was closed but we are still glad we at least walked around. There were so many joggers at night, I'm sure we had 50 go past us on our walk. Here we are in front of the Washington Monument.
