Wednesday, March 14, 2012

Its Good to be Home

Feels so good to be home and holding my napping little man.
Noah has only been in the hospital sick 2x in his 14 years of life. I guess you can say that's pretty good. It was by far the best experience we ever had while in the hospital.  Noah has been in the hospital for test, surgeries and being sick.  I have never felt like part of the team trying get him well, like I did this last weekend.  They really listened to me. The one time he fell asleep Sunday afternoon for a short cat nap a nurse came in and wanted to check something, I kindly asked her to come back. Since it wasn't a matter of life or death, she listened to me.  When the doctor was doing her rounds Sunday night I talked her into letting Noah go home and sleep in his own bed. I was so impressed and glad I was being heard. It defintlely gave me the boost of confidence I needed when I take Noah back to the Cleveland Clinic next Tuseday.  I would be lying if I said I wasn't worried.  I plan on being nice but, speaking my mine about the whole idea of Noah weighing more.  All the work I've done this last 5 weeks is now gone......
Last time Noah was at the Cleveland Clinic:                            57.8lbs.
Doctors office 2 weeks ago:                                                     59.4lbs
Hospital Sat. night:                                                                    58.9lbs.
Sunday afternoon after being pumped with fluids:                       60.9lbs.   
                   Monday morning at the Doctor office:                       57.9lbs.  

Wow looking at that all layed out in front of me, makes me want to just scream and cry out in frustration.  I am the best Mom for Noah and I'm doing everything I know possible for him. I just hope I can get my point across to them that they will undrstand.  I'm just so sick to my stomach right now. In fact I look back on the last 5 weeks and wonder if this is the reason I've not felt 100%? What did they really mean by the statement? "You have 6 weeks."  Because I surely didn't get done what I was suppost to accomplish.  Please keep Noah and I in your thoughts and prays.  I can do this!!!!



Phil Dzialo said...

You know, Sue, whenever you post pictures of Noah he looks great and healthy...his face shows no signs of lacking anything and I imagine that given the fact he is never/rarely in the hospital, his care is great.
Now I have seen emaciated kids and skinny kids like my Adam. His spasticity burns up more calories than we put in; so he's skinny, but healthy. Noah looks great and the fact that he rebounded from his latest illness so quickly is a testament to his outstanding care...don't worry about doctors! I'm sure that if the hospital thought something was awry they would have mentioned it.
It's ok, what would the doctors have you do, pump him with 5 high calorie avacados each day and add another 1500 calories...our kids cannot be defined by growth charts in the doctor's office.

Linnea said...

The other commenter is right. Her looks great. My Noah's GI dr says that trisomy 8 kids are tiny for a reason. We dont know that reason but obviously God made them that way. What if we did something to make him get bigger and something happened to another area of his body? I cant wait to hear how the appointment went. He was sick in the hospital and has trisomy 8 thats why his weight is what it is..thats what I would tell them. If they dont like it oh well.

BE blessed