We've been home for over a week now and things are okay. His numbers went up again on Sunday, so Mark took him back to the hospital and now we are doing steroids through his IV (we have to do this!) His numbers have been going back down and we were very happy...until today when I talked to the doctor. Apparently, they wanted to see much more change in his levels and because it's been so long now they should be dropping faster. Starting today we are adding antibiotics with the steroids. I am a little discouraged because if his levels stay this high for much longer we are looking at damage to his liver. The bad part of this antibiotic is it suppresses his immune system...even more. We have already required people to have a flu shot before coming to our house and have been cleaning every thing! We are supposed to put him in a bubble, but also let him live like a little boy.
Life in a bubble is fun for a few days, but now the poor kid hasn't been out of the house for a week. Avery has to stay home from school because we can't risk her bringing things home and Lincoln came down with a fever/rash from a viral infection!!!!
We are trying to make it as fun as possible while trying to live a normal life. Here are some pictures of his journey:
|We have Juice Boxes|
|While watching a fireworks show|
|They enjoy eating in the "big chairs" next to each other|
|Daddy had to go out and get them something|
|It just happened to be a power wheel-they love it, but are still working on the steering|
|These fun cookies have helped him get through when the nurse comes to take blood. Thank you Hirsch family-they are yummy!|
|We have to do lots of crafts!|
|The ipad has helped while he takes his medicine through his IV|
|Lincoln hasn't felt great, but always has a smile-especially for his big brother|
|All five of them playing together!|
|They all got a present from Cohan and Ireland-this was very exciting! Thanks for the visit-the kids needed to see outsiders:)|
I found these pictures on our ipad. We are really thankful for our nanny Emily! She is always there to help and Mack loves her (as well as the other two). She has a lot on her plate, but never complains about how hard the three of them can be-thank you Meme for being great during this hard time!
So, living in our bubble hasn't been too bad and we are trying to keep them entertained. We take more blood on Monday and head back to St. Louis for a doctors appointment and then are staying there for Thanksgiving! Please continue to pray for our guy-he is tough and we are trying to stay positive!