Monday, October 8, 2012

Update on Raygen and Addison

 I think Raygen is starting to feel better.  Today she was very fussy and grumpy but when we got home after work we got to see some of those wonderful smiles.
 Raygen is done with her medicine.  She still sounds very congested and has a pretty good cough.  So far her O2 and heart rate are staying good as far as I know.  She is pretty hard to get hooked up to her monitor now.  It doesn't make her very happy even though it only wraps around her foot.
 On another note.  Raygen has started eating!!!!  Shocker!!!  She has ate a jar of baby food for the past two days.  She even ate it off a spoon, no tricks.  She has been eating Gerber pears, cinnamon, and rice mix.  She loves it.  She even likes the apple, cinnamon, and oatmeal mix.  I am thinking cinnamon is the key.
 We are so proud of you little girl.  You are amazing us everyday.  Even when your not feeling 100% you still give us your wonderful smile, laugh, and kisses.
 I also purchased a nuke sippy cup for Raygen over the weekend.  She seems to really like it.  Better then a bottle.  It has handles and is easy for her to grab and throw, lol!  She has been drinking a little apple juice on and off through out the day.  I just leave the cup on the floor with her so it is easy access, just in case she wants to try it out and so far it's working.
 Please say a little prayer for our girl.  Please pray that her cough goes away and that her congestion gets better soon.  Also, please pray that she continues to eat and enjoy it. 
 Zoie and our niece Taylor at the football game Friday night.  Zoie did mini cheer camp and did an awesome cheer and dance routine.  Were so proud of you Zoie.

Bailee, Zoie, and Taylor at the Onalaska Apple Harvest Festival Parade with our Buck's Logging Inc log truck.  The girls rode in the truck and threw out candy for the kids.  They had a great time.

Here is the latest update on Addison:

Ronald Mcdonald House

Posted 29 minutes ago
Addison has been officially discharged to RMH! We are doing well and getting used to the new medications, doses and times. Addison is still sore and complains of back, chest site and head pain but she is tolerating well. Her smiles are back and truly Gods greatest gift. She is doing well with the 3 medications she must take by mouth and the other 4 we do through her g-tube. She fights it but with some Love and Logic and a sticker chart she is persuaded easily. :) Wound care is another story as she hates it, but again not an option!! Today we had our first clinic appt. We checked in at 730am and we were finished at noon. Addison had blood work, EKG, an echocardiogram and weight check. Addison currently weighs 28lbs. She had a hard time with the blood draw but from what we are being told she will get used to them as time goes on.
Her trough levels for her rejection medications were 96 with the goal being 175-225. Transplant team went up on her Cyclosporine hoping her levels will go up by Thursday clinic. She had 2 of her 3 chest tube sutchures removed today as well. Thursday she will have the third chest tube stitch removed and hopefully the stitches on her wrist removed where she has a nasty cut down.
Addison continues to work on eating and I can honestly say I never guessed getting a child to eat 450 calories would be a challenge but at this point it is. She drinks 1 boost a day and is on a night drip of 250mls over 5 hours total. The goal being she eats 450 calories on top of that and the boost during the day. It's a challenge but she is slowly getting there. She isn't gagging, she just needs to learn the concept of wanting to eat for nourishment. Something she did not learn as a infant.
As of now we must stay in the Denver area and continue with twice weekly clinic appts. to check for rejection over the next 3 months minimum. We continue to live in faith as His plan is the only plan and we can't predict the future just give thanks for the amazing day.
Please continue to pray for our donor family as they are on our minds every time we look into Addison's bright green eyes. Which is often! We are truly amazed by this gift and words can't express how truly thankful we are.
Thank you all for your support and prayers and as Addison would say "I love you more than cupcakes!"