Sunday, October 27, 2013


Jacob has been a busy boy, since he came home on Tuesday night. First of all, we are still home! Jacob looks pretty good, and his white blood count was finally normal on Thursday. It was such a relief. I guess I didn't realize how stressful this last hospital stay truly was until I could give out a big sigh of relief. These blood labs are stressing me out.

Jacob hasn't wasted any time, since he got home. He got his own talker this week. We call it his Batman talker, since it is slick and black and yellow. The talker helps Jacob to get out the super hero in him. We are truly amazed with how much Jacob is able to communicate with us. He is definitely a little bossy, but I'll take it any day! As he got his own talker, we were five (!) women in the room, and it got too loud for Jacob to hear his choices. He immediately told us "people, please be quiet". He then told us he wanted to hang with daddy, the only one not home at the time. We also love that Jacob is able to tell us how he feels. This has been our biggest struggle all these years to know how Jacob truly feels. We now know that he actually told us about his tummy and the ulcer on his butt before we even knew he was sick.

We have had a warm beautiful fall weekend, and Jacob didn't waste any time inside. He was working hard on painting his pumpkins this weekend.

Today turned into a very special day for all of us. Our dear friend Lorene brought her son's bike for Jacob to try. I think the video talks for itself. It is only 20 seconds, and well worth your time :-

It was a beautiful moment with Jacob, and we know what Santa will bring Jacob for Christmas. It was both wonderful and heartbreaking when Jacob kept telling us that he needed to go for a bike ride tonight. I had to keep telling him that the bike belongs to his buddy Robert. It was the first time Jacob has truly expressed a need for something, and I couldn't give it to him. It was both wonderful and bittersweet.

Tomorrow, we are back at Children's. It is time to meet with hematology, and come up with a plan for Jacob's blood issues. The reason Jacob has issues with his white blood cells is most likely due to long-term use of medications, so we are going to have to look at the most harmful medications for bone marrow issues and see if we can come up with a plan. We know it will involve both GI and neurology as it stands now.

Wish us luck, and hopefully Jacob can soon ride his own bike!

Love, Maria.

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