His walking has gotten better as well. He still has a hard time using his toes, but every day we see little improvements. It is nice to be on some semblance of a schedule now that Cole is back in school. We have started doing school work with Jake and are working on trying to figure out what to do with him school wise this year. (Another fight and story for another time) He does better when he is on a schedule. We are looking at putting him in guitar lessons and maybe trying out karate to help build his strength back up. He cannot swim or run right now and it is the only thing I can think of that may help. I am so grateful how 'easy' this has been. (Easy is relative) Even though it has been extremely difficult, I look at other families and know how lucky we are. It could be so much worse than it has been.
Friday, August 3, 2012
Day 79
It has been a great week! Jake had clinic on Wednesday and he is looking really really good. He gained quite a bit more weight this week, so we switched him from TPN to fluids. His magnesium levels are still a little low which means he will most likely be on fluids until day 100. His ANC was at 1400 and he is finally eating more than grilled cheese and pretzels. Most days it is still a fight to get food into him, but he is doing better. We had a long discussion the other day of "why". It is his favorite word. He gets embarrassed to wear a mask and it can be a huge fight to get it on him when we go out. Most days he is fine and as long as he makes the decision himself, we are good to go. We have to tell him repeatedly that the reason we are doing this is to keep him safe and get him better. He understands, but it is still hard. He has had to grow up much faster in a lot of aspects of his life than other kids. It makes me sad because he lost that innocence too quickly. But, he is still much more immature than other kids in a lot of ways as well. Sometimes I feel like we are in a lose lose situation with him. It is frustrating and I have to constantly remind myself to take it a day at a time. If we look at the big picture it gets very overwhelming.
His walking has gotten better as well. He still has a hard time using his toes, but every day we see little improvements. It is nice to be on some semblance of a schedule now that Cole is back in school. We have started doing school work with Jake and are working on trying to figure out what to do with him school wise this year. (Another fight and story for another time) He does better when he is on a schedule. We are looking at putting him in guitar lessons and maybe trying out karate to help build his strength back up. He cannot swim or run right now and it is the only thing I can think of that may help. I am so grateful how 'easy' this has been. (Easy is relative) Even though it has been extremely difficult, I look at other families and know how lucky we are. It could be so much worse than it has been.
His walking has gotten better as well. He still has a hard time using his toes, but every day we see little improvements. It is nice to be on some semblance of a schedule now that Cole is back in school. We have started doing school work with Jake and are working on trying to figure out what to do with him school wise this year. (Another fight and story for another time) He does better when he is on a schedule. We are looking at putting him in guitar lessons and maybe trying out karate to help build his strength back up. He cannot swim or run right now and it is the only thing I can think of that may help. I am so grateful how 'easy' this has been. (Easy is relative) Even though it has been extremely difficult, I look at other families and know how lucky we are. It could be so much worse than it has been.
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2 comments:
So glad Jake is eating better and off TPN. I fight with Millie over everything she puts in her mouth, it's so frustrating, but I'd rather do that then be on TPN again. Sometimes I think she is faking her stomach pain, but how am I to really know. I feel guilty even saying that.... Anyway, I love hearing good news from you. I hope it all continues. I also hope that school works out for Jake. I know that has been a frustrating situation. Always thinking of you.
ps, you are so close to day 100! That's awesome!
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