Sleep Study 5

Having another sleep study since Caleb suddenly got off o2. We will decide if we need to reschedule his surgery for the removal of his adenoids. He had a lot of sleep apnea and we will see what it is like now. Caleb is being pretty sassy :) He is 21 months old and has full trisomy18

New Year's Eve!!!!

Quiet evening with family. It is not another year gone...
but another year earned.

Christmas 2010 News Article

The Ocala Star Banner did another wonderful article on Caleb & our family. We appreciate them wanting to help educate people on Trisomy 18...and to put God and a personal story to it.
http://www.ocala.com/article/20101225/articles/101229835

Thoughts of Christmas

Christmas is only a couple of days away. It is getting here way too fast. I am so excited, yet sad too. As I shop for presents for Caleb, or driving around looking at Christmas lights...I'm overwhelmed with so much happiness. I am also overcome with the feeling of saddness because I wonder if this will be the last year I can do this. I want so badly to hold on to this moment...to cherish every second. The boys are so excited and I love seeing them smile....especially when they are with Caleb. I pray we have many more Christmas', many more days to cherish the blessings God has given us. I love my family and the moments we have together....I guess I'm a little bit selfish because I want more time...more tomorrows. But I also thank God for every moment.....these are the moments we never thought we would have.

Funny paper

Caleb LOVES the sound of the paper that they put on the Dr's tables. He just laughs and laughs. So one of his Dr's gave us a role to bring home....she thought it was hillarious how he gets so excited over it. Caleb is 21 months old now....he finds laughter in the simplest things in life :)

STINKY!!

Getting ready for my bath...daddy's taking the wrap off my foot from the pulse ox...and it TICKLES!!!!! See my teeth :)

Trying to figure things out

Caleb had been in the hospital for 9 days because he had a severe UTI. He had also been having pain, vomitting & diarhea for about 1 month with no explanation why. He wasn't tolerating his feeds and his GI Dr. felt it was best to admit him to be evaluated. That is when they found the UTI & kidney pyelonephritis. He went on two IV antibiotics. They also found during this stay kidney stones that were embeded in the meat of his kidneys. They switched his formula to see if he could tolerate it better. We were discharged with a follow up to see a Pediatric Urologist in Jacksonville.

When we got home he still wasn't tolerating his feeds well. I did a little bit of research on the different formulas he was on and called the manufacturers. Eventually we figured that Caleb probably has a intolerance to maltodextrine which is a corn carbohydrate. The only formula that doesn't contain this is Alimentum RTF. He has done well on it so far. After further testing of his kidneys, we found out that he has grade 4-5 reflux in his left kidney (which we've known for over a year), but also has grade 4 relux in his right kidney. This was so upsetting. His Urologist feels optomistic that we can handle it with the daily antibiotic but wants us to have a DMSA to see how his kidneys are. So far we have had kidney u/s, cat scans, DTPA, VCUG, and will be having a DMSA.