Saturday, July 31, 2010
Last Tuesday, Harmonee did her swallow study to see if she was able to swallow with out aspirating. She passed with flying colors! Dr. Book then gave the okay to pull the NJ and replace it with an NG. Meaning; Harmonee is now allowed to eat like a normal baby girl! She took to eating with the bottle pretty fast after her NG was placed. After a few days that is all she would take and we didn't have to give her any formula through her syringe. Yesterday at liver clinic they upped her eating, and so far so good! We were also told that if her labs come back good on Monday she will go down to once a week labs and her broviac will be pulled. This is great news! This also means that tonight is her last night of IV medication for her CMV!
The P.T comes once a week to work with Harm. She is up to about 6 months developmentally from newborn getting home. She scoots she sits she rolls, next step is standing! Of course her legs are strong enough, just need a little more balance with her tummy.
Brandon left on Wednesday. We had to explain to Layla that daddy is going to work, but wont be coming home for a little while. At first, Layla kept asking, "Daddy go to hospital too?" Brandon kept telling her no, the army was taking him for a little "vacation". After a minute of trying to process this, Layla walked to Harmonee, "Harmonee no hospital, daddy no hospital. Where are you going?" So Brandon explained as much as he could. After a little while of getting use to the idea, Layla told Brandon, "You can't go with Army." It's been hard on Layla, after just getting our family back together someone is leaving again. But this morning she told me, "I miss daddy. But daddy safe, and come home soon."
Friday, July 09, 2010
Hayden is 5 years old. He has Biliary Atresia and Dr. Book is getting him ready to have a liver transplant with in the next few months. He and his wonderful family need our prayers and support. We can make a difference in Hayden's life. The same difference we have all hoped for for our own children with these awful diseases. Hayden has been in and out of PCMC for BA and several other complications that have been created from his sick liver. I have recently met his mother Tessa and sweet Hayden. They are a wonderful family, and insurance isn't helping them the way it should.
The liver transplant and related medical procedures (as everyone already can guess from their own children) will be very expensive. A fund has been established at Wells Fargo Bank. Please send domations to "Hayden Cullimore's Donation account." There is no income tax deduction available for any donation or purchase to this cause or fund.
A 5K run, titled "Help Hayden Heal", will be held July 17 in Pleasant View, Utah. You can mail in your pre-registration forms to: Help Hayden Heal, P.O. Box 13407, Ogden, UT 84412-3407. The runners will pick up their packets and any pre-registration stuff will be done that morning from 7am - 7:45. Then the run will begin at 8am, following the run will also be a silent auction.
The registration donation is $30 per person, however you can register in advance for only $20. A registration form can be downloaded from Hayden's web page - http://www.familyforever.com/Hayden
Benefit Concert and Auction
Monday, July 19, 2010 at 6:00pm
The Layton Amphitheatre, Layton, UT
The Layton Amphitheatre, Layton, UT
The concert will feature Dallyn Vail Bayles, Mercy River, Paul Cardall & Jessie Clark Funk.
In the auction we have some rare, unique and collectible Utah Jazz Memorabilia including autographed shoes from Kyle Korver and Andrei Kirilenko. There will be many unique and affordable gifts from local boutiques, and local University apparel.
Doors open at 6:00 for the Silent Auction and the show starts at 7:00 PM.
You can guarantee yourself a seat by purchasing your tickets in advance at the following link:
Tuesday, July 06, 2010
Harmonee went to liver clinic today where everything passed off good! Except for her prograf level. Doctor Book is trying to figure out why her level is so unsteady with so many dose changes. On Sunday, a home care nurse spent the day at our house. She took labs in the morning and labs at night. Each one hour before an hour after and and then two hours after her prograf was given. The prograf level an hour before was far to low, at 2.2. Needing to be around 10. The prograf level an hour after was 8 and the one 2 hours after was 5. The doctors are now trying to discover why her body isn't absorbing her prograf. So we will just stay quarentine, which is okay with us.
We went to the emergency room twice last week for Harm pulling out her NJ tube. Such a nosence going into put a tube back in, but a day at PCMC is much more welcome then an hospital stay ever will be. Harmonee is doing great, almost sitting up by herself and loving being a "normal" little girl!