Friday, September 30, 2011

A walk, A button, and a wish for a pillow won't believe this. Emily trained with Charlotte on how to replace Jude's G button. Charlotte thought it was important that everyone in the household know how to replace the G button in case of emergency. Emily had no fear about learning the G button process. Charlotte said she took it out with ease and put the new one in with ease. It's amazing to me that my soon to be 13 year old child can perform procedures many Rn's do not complete on a regular basis. If you have never seen a mic-key button you can google them.

Jude and I missed our nightly walk on Wednesday so we took Emily and walked last night. He giggled the majority of the way. He has started this new game where he throws his head out of the wheelchair and giggles because he knows I have to place his head back in the neck ring. Our nightly walks have become so routine that when I rolled Jude's wheelchair into the living room to pick Jude up our dog Bigs immediately hopped in the bottom carrier. Yes, Bigs still rides.......he doesn't walk. Mike commented on how the dog was worthless last night. I replied, "Seems pretty smart to me......I mean he hitches a free ride vs walking".

Jude was up again a few times last night and I was rather frustrated about 4:30am. It is still hard for me to grasp that we may never really sleep through the night again. Is that selfish to be frustrated? I mean poor Jude is reaching out to me because he is so aggravated he cannot roll over on his own. I would get so tired of laying in the same position that I would wake up several times during the night too!

We have a busy weekend lying ahead of us. I hope everyone has an amazing weekend.

1 comment:

Kirsteen said...

I see SOOOO many similarities between Jude and my son Ethan. Ethan is coming up 6 in December and has been through many of the same things Jude has.
I see your frustration at the very same things Iwould get frustrated about......I didn't sleep through the night on a regular basis until Feb of this year when we had a baclofen pump placed to help manage his tightness.
Ethan also takes Klonopin as one of his epilepsy meds.
I'm so glad that Jude is becoming more responsive these days - Ethan is getting better too, especially since we took him off Depakene.
I understand the diaper thing too. While I was picking up a box of size 7 for Ethan one time a lady mentioned that perhaps I should work on potty training.....well you can imagine what my response to that was......I know you said that you would be getting some soon, but wanted to tell you that toys r us and babies r us sell the value boxes of the bigger can also order them online.
Also, you mentioned getting a nother wheelchair for Jude. We have the Zippie Iris and love it. You also mentioned that the Special Tomato seat doesn't work anymore (we had one too and it never positioned hiim properly). We just got the X:Panda high low chair - I think it's by R82. WE LOVE IT.
Just thought I'd pass this on....
Have a great weekend.