Thursday, October 27, 2011

Progress and therapy equipment

Day 3 of getting healthy and I already feel better! Last night I walked about 3 miles which was great. Today it's chilly in TX and I was happy that Jude got to stay home in his cozy bed today versus going to school. They were having a teacher in service day so the teachers asked if he could attend school tomorrow vs. today. Jude also slept fairly well last night, but he gave me issues with going to bed. It's strange how he goes through cycles, I guess we all do that in life. He truly acts like a toddler at times that doesn't want to go to bed. I was happy he slept and so was my body! I feel pretty rested today. A lot of my rest can be credited to Charlotte who still allows me to sleep for half an hour in the morning before I go to work.

So I am on a mission to make Jude's life and our lives as easy as possible and as beneficial as possible. So I am reaching out to my blogger community who have always been amazing. We are having difficulties getting a wheelchair accessible van. This as you know has been an on going issue. Due to Jude's situation and Mike's jobless situation for two years our financial situation was RUINED! I have a good job, but I couldn't finance an ice cube (hey being honest right? ). It happens! Losing a job or a tragic situation can cause financial devastation. This doesn't mean anyone reading this blog is any better than I am because you can obtain financing. It just means our situation is a bit more difficult. I will find a way to make it work (I always do), but if you know of places that help with financing it would be great to know. After the first of the year I plan to trade my vehicle and obtain a van.  Next, we need to get quotes from a reliable contractor that will work with our situation on converting our closet into an accessible bathroom. We discussed various methods of accessible bathrooms....converting our bathroom, converting the half bath, but even Charlotte agrees this is the best route. The half bath is to small and our tub is not conducive to what Jude needs. Therefore, we are converting our closet and building a wall closet in our bedroom.  We believe a roll in stand shower with a bath chair will be the best for Jude.  Mike's brothers are also very handy so they can help whoever starts this project. We may not be able to follow through until next year, but we need some quotes from a reliable source.  Next we are getting the platform "bed" for Jude for our living room. We are basically just discussing models and sizes at this point. Jude would keep his existing safety bed for his room this is just for day time. In addition I have an amazing insurance client at work that owns an upholstery company and she is providing Jude a larger exercise mat for therapy. I also placed more phone calls to various therapy companies to try to find the physical therapy and speech therapy in home. We will then work on the aquatic therapy. I believe the aquatic therapy will have to be with his teacher since I still work. Jude may be limited because of his lack of head control and speech, but we are determined to give him every opportunity we can.

The great news is that when I asked Jude if he wanted mama last night he started rubbing his left cheek. If you remember ... that is the sign I taught him for mom. I am still working with him on a sign that is easy for him to remember for dad. If you touch his chin he opens his mouth and his cannot get his hand to his forehead so I am still working on finding a good sign for dad and sissy.

Anyway, I am a busy bee. I know we will be having a meeting with Jude's teachers within the next few months regarding this progress. I look forward to this meeting.

1 comment:

Anonymous said...

Your post got me thinking about vans, so I stopped by Jay Hatfield Mobility - it serves Kansas, Missouri. Anyways, if you can find who services your area for vans with lifts it turns out they know about all kinds of funding and grants. Check into United Cerebral Palsy I was told that they will give 2500 towards a van, but currently at least in our area are out of monies until Jan. Anyways, I didn't think we were looking yet, but found an older 9 passenger (we have more kids and need big) and are taking the leap of faith in purchasing our first new to us van with a wheelchair lift and it ended up being under 10,000, so higher miles, but we don't travel, so we put on less miles, so truly you might need to just go and speak to someone and also here at least they take tradeins, so we can trade our newer van in for an older van, but at least one that has what we need.
And just to keep perspective I guess - Jude appears to have much more equipment etc... then we have been able to get for Meya, so it just all seems to happen in baby steps. We really need a sleep safe bed, but that will come with time I guess. Also, our kiddo has similar physical needs to Jude, but since she does not have a g-tube we do not get any nursing hours. So life with a special needs child is really so unique to every family and finances and it is hard to juggle all the extra expences, so hang in there!