4/19/07 11:00 p.m.
Today was a bit of a rougher day for Josh. As the move date draws ever closer, nerves seem to be coming in to play (even if Josh won't admit it). We had another bout of dysreflexia and we talked at length with the nursing staff about how to handle it at home. I'm feeling a bit more confident about the whole situation but it still kind of stinks.
We started taking the room apart tonight in preparation for Josh's discharge tomorrow. It felt kind of weird, I even felt a little nostalgic in some sort of sick way, getting ready to leave. After being at MFB for almost 3 months, we have made some great friends and people we will miss greatly. Josh is definitely ready to leave but still wants to put in a full day of therapy tomorrow.
Today we spent time in the power wheelchair a.k.a. the I-BOT today. He was trying it out in some rough terrain, going off of curbs with it in a high speed and generally seeing what it can do for him that other chairs cannot. My mom was there and was very impressed and was convinced it was a definite go-ahead and well worth the additional dollars.
We did have a disappointing bit of info come our way. Josh is always in his power-assist chair and was hoping it would be ready in the next week or week and a half. The goal was to have it by the time he was discharged or the week after he leaves. We found out today that somehow there was a miscommunication and it was not ordered. It will now be a while before the chair is ready and Josh will have to depend on a power chair that he does not like. It is not the end of the world, but Josh was really upset. When he gets "angry upset" I feel like I can handle it, but today he got "quiet upset" and those situations are much harder to deal with. By tonight he was doing better but still very frustrated.
He spent some time in a 3-wheeled bike today that is hand controlled. It did NOT work so well. His hands kept falling off the handles, his knees kept hitting the bars, and he kept falling forward. He did not act too bothered by it so I thought he was fine. Later tonight he talked about how embarrassing it is in those situations but figured laughing was better than crying. It's amazing how, even after 3 months of watching him deal with this situation, I still cannot always read him correctly. It's hard to hear your husband talk of being embarrassed about situations he has no control over.
He did have the honor of holding a baby this morning. One of the therapists brought in her 7 week old little boy to show off to all her coworkers. Kristy (PT) brought both the mom and baby upstairs to give Josh a chance to hold little Jorgan. Josh said he felt decently comfortable and the baby was adorable. He said that Jorgan laid there so quietly after a few minutes and gave him some huge smiles. I think it made him feel like he may be capable of holding Ephram and definitely got him more excited for his arrival.
Tomorrow will be a big day for us. Please be praying that everything goes smoothly and that Josh feels like he is ready to leave. It will be a huge transition over the next few months and we are excited but nervous. We know God has us in the middle of his plan and we have peace knowing that. We continue to beg God for Josh's body to be healed, but we also are dealing with the realities we have to face on a day to day basis.
-the move tomorrow
-Josh's fingers and triceps