Thursday, October 8, 2009

10/5/09 Check-Up (Posted by Julia)

Here I go with the paraphrasing and nut-shelling... (Lizzie, feel free to log in and make corrections!).

LuLu just had her Monday checkup with Dr. Book at Primary Children's Hospital. Overall, LuLu's health is declining. Dr. Book said that her little body is telling us she needs her new liver sooner, rather than later. The goal still is to reach her first birthday (December) before the transplant. Her blood draw showed deficiencies in protein, potassium, and sodium. Her feeding regimen was changed from fortified breast milk to a specialized formula to help correct the deficiencies.

London did gain a little bit of weight, but the fluid in her large belly (see below) makes everyone suspicious of progress on the scale. Efforts to fatten her up for her surgery have been in vain. Her failing liver doesn't process nutrients and fats efficiently, so it's extremely hard for her to gain weight.

Overall, LuLu seems to be feeling more and more uncomfortable. There are some days when London will cry for the better part of the day, and her dear, sweet parents don't know why. It could be any one of her various symptoms. Now if she'd just stop pulling her feeding tube out...!! (see below...)

Despite her struggles and discomfort, London is a happy, loving, curious baby. We all love her so very much. Hugs and kisses, Baby Girl!

*Could this picture be ANY cuter? Seriously?


nennermommy said...

OOHHH this just makes me so sad and hits home! I have a 5 month old little girl named Londyn and I call her Londee LuLu!!!! You are in my hearts and prayers!!!!
I would have to say that picture could not be any cuter! She is amazingly Beautiful!!!

Jo Lynn said...

My heart is breaking for this sweet little angel that I don't even know, but love more than anything! I love the pictures and my prayers, fast's and each time I visit the temple I will ask that she can get her new liver very soon! What a beautiful, sweet little girl she is! I love this new blog and please keep us all updated as to her progress!

Amanda said...

It breaks my heart to see and hear of this, I have two boys and I can't even Imagine, especially when this is happening to a friend! My thoughts and prayers are with you Liz and Family! I hope she will get her liver soon...yes she is the cutest little thing ever! Hang in there Liz...xoxo

krissy said...

I don't know you but I have been right where you are. My daughter received a liver transplant a little over 4 years ago. Dr. Book took care of us too:)! <3 her! I pray that things will go well for your little one. Our daughter was almost 8 years old when she was transplanted. We had 8 very long and difficult years. Our transplant went well and we are grateful everyday for our donor and his family. Our daughter is healthy, growing and as pink as can be! May you be blessed in your transplant journey. We will keep you in our prayers. Love from one liver mom to another<3.
Krissy Hakanson

happy2Bme said...

I was updated by Lulu's Grandma yesterday, but did not read my mail until today. What an adorable angel you have ( she reminds me of her grandma...a true angel of mercy and always finding a reason to smile in spite of pain). Please know for sure that my thoughts and prayers are with you.
Donna I. Fowkes...a coworker of her Grandma's.


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