Monday, September 17, 2012


40 is the magic number.
No I am not turning 40.

Brayden almost weighs 40 pounds.  He weighed in last week at 39.4 pounds.
What is the big deal about 40 pounds?

When Brayden weighs 40 pounds he can no longer be lifted/carried by his nurse.  That is the 40 pounds Brayden needs to be lifted by two people...the nurse and me.

I absolutely understand that this protects Brayden and the nurse from injury.  Carrying a 40 pound boy, who offers no help, is hard.  But now I have to be there every time Brayden needs to be moved.  This time of year is not that big of a deal; Brayden is at school Mon-Fri where there are plenty of people to help move Brayden.

But what happens when he is not in school?  He spends the entire day in bed because the nurse cannot move him?  I really do not leave home for hours and hours, leaving Brayden and the nurse at home.  But now I have to be there to move him in to the shower, out of the shower, into the bean bag, into his wheelchair, into his stroller, into his tomato chair...and back out of all of it.

My biggest battle the past year has been about his bed.  I do NOT want him to be a "bed" kid, a child who is basically bedridden.  Brayden is happy in his bed but it is not good for him to be in bed all of the time.  He is a five year old boy who needs to be up participating in life.

It just seems like I finally have a taste of freedom, being able to leave the house for more than a couple of hours at a time, and now those windows of freedom are getting smaller once again.  What do other families do?

It is great that Brayden almost weighs 40 pounds, we have fought for him to gain weight, for him to be healthy and is his doing great.  Moving him is not going to get any easier...


dannette said...

That blows my mind that the max is 40 lbs. Can't she use a gait belt to transfer from wheelchair to bean bag etc..? I don't know much about nursing care since Meya does not qualify - in our state the child has to have a gtube to get nursing. Meya is total physical care and weighs 50 lbs and this mama just has to heave ho and carry on. I am interested how this will work out for you, can't see the total point of nursing care if you can't be freed up to do other things at least for some good chunks of time!

Debbie said...

I feel your pain....Hudson is 40, and I am alone when it comes to all his positioning. I now have the hardest time getting him out of the bath tub.....dead, slippery is tough. I try to do it in steps. I typically carry Hudson like a sack of potatoes over one's pretty comical looking I'm sure!
Hudson doesn't go to school, so I am typically there for home based therapy. Occasionally I have a care giver, but she takes care of adult size CP kids, so Hudson seems easy to her. I try not to think about tomorrow...45...50....I only pray Hudson will grow to be that big because I don't know what tomorrow brings.