Thursday, October 27, 2011

Cleaning house and people come through

So after my post I came home today with a map drawn out of the house and a final plan! I presented it to Mike and well...took charge. The plan is to bring the twin mattress down from our guest room. We are going to get a twin platform bed to put up against the window wall in our living room. We are then going to purchase kids first safety railing to put on the side. It will be perfect and cost efficient! We will be moving the twin from what was suppose to be Jude's room as a baby. We all know that plan got nixed, but that's okay because he has an incredible room now. We are then going to paint the walls in his old room.  I told Mike we are selling the dresser, the twin bed frame, all Jude's baby bedding, and the items on the wall. He looked at me and I put my hand on him and said, "It's time to move forward". We have been very attached to Jude's baby items....all of them, because they are material items representing what his life was suppose to be. I explained that it's time to let those go and celebrate what his life IS!

After we move out those items we will be painting that room and it is becoming the Regal Princess/Emily's Smile Boxes headquarters. I am then re-decorating my little loft area........I AM SO EXCITED! I get to decorate :). I am moving our wicker chairs and antique table into the loft. We are either having one large garage sale or selling it all online. Jude will then have his own platform in the living room for his place during the day when he is not in his stander (loaned) or in his tomato seat. We are also getting lots of buckets to organize all his toys and therapy items in the living room. Aw, I can breathe again. I feel so light.

Jude is lucky. I had someone point out that Jude has a lot of equipment and I definitely see that and I am very thankful. So don't get me wrong when I moan and groan it just makes me feel better.  Some of it like the nursing was a huge battle, but very worth it. That was a rough two years without any help and I know families care for those with special needs without any help at all. I am not trying to be a hero here and I gladly welcome in our nurse everyday.

I also got some advice on the van that will help.  I just needed to find financing and we are making progress. After we get the rooms painted I am calling in for an estimate on the bathroom. I think we can get that done in January. We are moving forward and I am excited! I really feel like everything is falling into place and it's all positive steps from here.


Reagan Leigh said...

Check out my most recent post. I asked our doctor a question based on something I read on your may be interested in her response.

Anonymous said...

Have you thought about getting a lift to lift the wheelchair in the back of your van? My son is 6 and that is what we are doing til the wheelchair will no longer fit in the van. we have a Bruno lift and it lifts his 55lb chair in the back and he still sits in the carseat which is still the safest way to travel. I got a grant through the United Cerebral Palsy of Kansas to pay for 1/2. Not sure if Texas has a UCP? it was about $1500 installed.Just another option that may buy you a few years :) Jill-my e-mail if you have ?

jocalyn said...

hey. just getting caught up. MDCP will pay for your bathroom remodel. they will also pay for a van modification. i have all the information if your case worker isn't able to locate it.
you get a one time home modification, and can also do the van in the same year.
we are very lucky. there are tons of resources for these types of things. all you have to do is ask. please let me know if you need help.
i can't believe your MDCP case worker hasn't guided you on this! you can also ask your nursing agency for suggestions.