Wednesday, March 09, 2011

Lots to Tell

I have been HORRIBLE at updating everyone. After the past few days of everyone asking me whats going on, I figure I'll update on the many things that have happened the past couple months.

Liver labs, are still not good. Of course that has turned into the norm for Harmonee. There are many theorys as to why her labs are bad. The first is her clogged portal vein. This is the most voted for through out the doctors. They think that because the scar tissue it clotting her portal vein that her liver is not getting enough blood. Therefore, no rejection, but bad labs. The second theory is her low blood sugar.

Blood Sugar:
We have been checking her bloodsugar at least 3 times a day and if she is acting funny. So far, so good. We put cornstartch in her formula to help boost it up, along with a new set of stress steroids called hydrocortosone, instead of the usual prednisolone. She takes the Hydo every 8 hours so that her sugar doesn't have much of a chance to drop.

There are also a few theorys on why her blood sugar is funny. The least anxiety packed theory is that her adrenal glands have failed. During her ICU stay last year before transplant the doctors had to pick and choose organs, (this happens a lot with Harmonee). Luckily the doctors picked the heart and lungs and kidneys to focus on, unfortunetly in the decision Harmonee's glands were let go.  The second theory is a horrible theory. They have recently looked into her donors health history and found a disease that causes high blood sugar, and heart problems. So far her heart is good. But her blood sugars are struggling to stay up. One of the opinons is that Harmonee's body is fighting the donors disease and is over reacting making her blood sugars low. During her every other weeks labs there is a new test taken to show a certain hormone that goes a long wtih the donors disease. So far, the blood sugar is the only indicator that anything is going wrong with it.

Everything with blood sugar and liver are mostly just theory for now. She goes into surgery March 24 to unclott her portal vein. After the surgery endocrinology is going to start looking more into her odd sugars and liver clinic is hopefully going to confirm their liver theory and start working on her low blood sugars.

HARMONEE IS WALKING!!! She NEVER stops now. She is still at the woddle stage that I love! Her and sister have races across the living room pushing their doll strollers, Layla, being the great big sister she is lets her win more times then not. Harmonee starts screaming when she wins "YAY!!!" She is talking so much. I attempted to email her daddy all the words she said and it came out to about 50! 0-3 has graduated Harmonee saying "she is up to date with a normal 17 month old baby!" Thats always good news. Of course, we still have speach therapy come visit. Her mouth trauma has gotten better but not by much. She still wont drink out of a sippy cup, and wont let anyone put food in her mouth except herself. She wont use a spoon or anything near her mouth, but she is getting better and has sipped out of a big girl cup!

I'll try not to take so long in updating next time!


  1. So glad that you updated! I've been wondering how things were going. Praying for a smooth surgery and good news.

  2. Oh my gosh, she's such a cutie! Thanks for the update. I'm sorry the road has been so long and hard for you guys. You are all amazing! Sending love...


  3. What is your email address? I would love to talk to you more about your daughter. My daughter is going through some similar stuff. I tried to leave a comment earlier, don't know if it worked or not.

  4. Harmonee is beautiful! Sorry to read that things are still so rough. What tough angels we have. I'm sending hugs your way.