He has been dealing with low WBCs , mild neutropenia and some other crazy numbers too. We have been keeping a close on them which means labs every week. He is back to having fevers all day. Brocs sensory issues have all returned. He is not able to sit still and focus, he cannot stop talking at times even if you ask him to. His balance is off and he is falling and tripping all over again. Its a very scary de ja vue for us as parents.
We really thought the IV treatments were working for him. He was only having a virus every 2 maybe 3 weeks. His sensory was under control. He was able to sit down and focus on a task. He wasn't falling or loosing his balance. Now we are back to back viruses. We had to give him steroids for a few days too in the hopes that it would calm down whatever was attacking his body.We are hoping that once we are over this extended virus things will go back to his normal. We will be looking at possibly changing his IV treatment or doing it more frequently.
We have been in contact with his heamatologist and she wants to only monitor him on a 3 monthly basis. There is some testing which we are parents would like to be done to rule out some things. His heamatologist doesn't see the need to do these now. We are going to make it a matter of prayer. His wonderful nurse has also done a ton of research about Broc to see if he can help us figure out what is going on. I fear once again we wont find an answer and we just deal with things as they come up.
We are going to be sending Broc to school unless he has a fever even if he has low numbers. Obviously if they are too low then we reach a dangerous level and he will not be going anywhere. He needs to be at school as much as he can. He is very far behind as he has missed so much this year. He is having an extra lesson every week to try and help him catch up.
He is doing very well on his feeds. We are still not at the rate that we need to be as this VIRUS caused his gut to slow down drastically. We are hoping that once he gets back to base line we will be able to increase his feeds again. He is still gaining weight which is great news.
We have been having lots of issues with his feeding pump and bags. We think its because he was too full and it was causing his pump sensor to not work properly. I finally called one of my special needs mom and she so lovingly came over to help me out. She showed me lots of tips on how to get around the pump and also introduced me to a few more things in the special needs world. It really was so nice to be able to talk about everything S.N. I was able to ask her lots of questions and Broc was able to talk with her daughter too who also has a button like he does. She was able to explain to Broc how she feeds and show him all her things. Although they are years apart she is double Brocs age they had something in common and connected.
Broc will have labs again on Friday and we are hoping that things will be back to base line for him. He is still getting tired as he is now going to school full day. The school and teachers are doing a great job of taking care of Broc and all his needs at school. Everyone is very attentive to his needs and interested about learning all there is to know about Broc. His classmates gave him such a wonderful welcome when we walked in the door on Monday.
Thank you for all your prayers,love and support.
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