Wow, it has been a long week. It was my first week back at work and Jacob's first week back to school. Karlee now is pulling full weeks at the hospital with Claire and I'm handling the weekends - or at least one of the weekend days, depending on how Karlee is doing with the extended stay.
This week she had me only stay over at the hospital one night, tonight, so she could get some sleep in a normal bed and rest up for the upcoming week. So, I find myself here at the hospital, unable to sleep. What better time to blog, right? :)
Like I said above, it has been a long week. Going to work and listening to my customers who have had damages done to their homes and are needing help fixing the damages has been a little less than therapeutic. Everything going on with Claire and the modifications I need to make to my own house makes everything else seem like it's much less important. Now, I still feel sympathy for those people who are calling asking for help, and I do help them and get them through their insurance claim, but jeez would it be nice if I could claim my remodel through insurance and only have to pay a deductible!! Oh well.. We need the income and I likely need the distraction to help keep me somewhat sane.
Jacob has transitioned back to school nicely after the Christmas break and brought home his progress report. He is earning a 3.1 GPA to this point of the year and doing very well at keeping up on his homework. He is a fantastic young man.
Plenty of updates on Claire too. She has been doing very well this week with her therapy. I think that having Mom around with her the entire time helps her feel a little more settled and allows her to focus more on what she needs to get done here so we can all get back to being at home. Day in and day out more and more seems to happen with Claire -in a good way- that gives us hope for a greater recovery than anyone anticipated. She seems to be showing more movement, both involuntary (reflexes) and voluntary as the days go by. She has, on command, been able to wiggle her toes and shake her legs, although slightly. I haven't had time long enough with both Karlee and I here to get the videos she has on her phone loaded to the computer, but once I have the chance I will get that done and post one of the videos to the site so you can all see how Claire is currently able to make those movements.
Claire is also getting very good at handling her wheel chair and really understands how to move the wheels to get the chair to go where she wants it to. I'm very impressed with how well she is doing with that, especially considering how difficult it was for her to grasp at the beginning. Like I have said throughout the blog - she is a trooper!
As I mentioned in last week's post, we did have a meeting with all the doctors and therapists, two representatives from the Department of Developmental Disabilities (DDD), behavioral health representatives, and the teacher staffed here at the hospital on January 12th. There were positives and negatives throughout the meeting, but essentially we discussed what insurance will be able to cover (wheelchair, hoyer lift, transition boards), what insurance is not able to cover (home modification, vehicle), what the DDD can assist us with (POSSIBLY home modification - but details on exactly what they are able to do are pending) and what they won't assist us with (vehicle), and the current prognosis on Claire from the doctor and therapists and how long they expect her to be here.
The hospital equipment person has placed the order for the hoyer lift to be delivered to our home - it is an hydraulic lift which helps us to move Claire from bed to chair and vise-versa, and also can help us to lift her to a standing position for therapy. The wheel chair will be ordered after measurements are taken and closer to the time she is discharged.
The DDD hinted at possible assistance for home modification but wouldn't commit to anything. They said they were going to contact me to schedule someone to come by and look at the house. They were quick to point out that whatever assistance they do offer would be limited to one (1) ramp into the home, and they would not assist with any exterior modifications (ie: changing our driveway from brick pavers to smooth concrete - another change we realized we will need to make).
We will see where this all goes. We know that moving forward Claire will be in a wheel chair. One of the doctors seems pretty optimistic that Claire will walk again, but that it's just a matter of time (time being anything from days to months to years) but not all of those involved are quite that optimistic. Karlee and I are continuing to hope, but know that if no further progress is made by Claire we are still happy and proud of what she has been able to accomplish.