Thursday, March 13, 2008

8 Easy (Easier??) things about this life

OK, I got a little behind in my, now I am going to play catch up! Now, back to our regularly scheduled postings.....

Our life post transplant has become so much easier. There are just so many things that I somewhat take for granted now....although I TRY not to. It's just the longer post transplant we become...the easier it is to put those memories of how difficult life was behind us. So, here are the top 8 things that I think have become so much easier compared to life before transplant:

1) Potty trained!!!- Before transplant Emma seriously had 10 -15 blowout diapers a day (I know TMI...sorry). Life is so much easier in that department:).

2) Medication- For one thing Emma LOVES her medicine, and she now reminds US about her medicine. She is also "only" on 6 medications vs. the 15 that she was on post transplant. Granted, I would LOVE for her to be on less...but...we'll take it!!

3) Oxygen - Post transplant, I had to carry Emma's oxygen around for the 7 months post transplant. I remember the day that she finally came off of it....a weight had been lifted from my shoulders in more than one way. We've had a few pneumonia scares where she has briefly been put back on it, but overall...she holds her own in the oxygen department.

4) Sleeping - This may sound bizarre, but pre-transplant Emma slept TOO much! I cherish the fact that she doesn't sleep much anymore. OK, getting up 4 times last night may have been a bit much, but I love the fact that she has so much more energy now.

5) Eating - Pre-transplant we literally had to force Emma to take her bottles. We calculated every single ounce and calorie that went into her mouth, and then we watch it all come right back out. She vomitted constantly. That along with the blow outs was SO difficult. We just watched her not gaining weight and getting smaller and smaller. Emma weighed 6# 10oz. at birth....she weighed 11 pounds on the day of her transplant, and her liver weighed 2 lbs!!! YIKES!! I look back now, and Emma has come so far in this department (mostly in the last year). She will try anything, and she loves to eat:). Mealtime is so much nicer in our house now. I don't have that fear about WHEN is she going to throw up???

6) Allergies - Emma's allergies post transplant became really bad. She is severely allergic to many foods, and moderately allergic to many others. Those allergies have not become any better, BUT in the last year we have found the right "cocktail" of medications to keep them at bay.

7) Personality - Emma is little Miss Personality....she always has been, but her personality is just shining through more and more every day.

8) Blood draws - Post transplant they tested Em's blood 2 times per day (this was immediately post tx...and she had a central line), then it went to once a day, then every other day, then once a week, then once every other week, then once a month, then every other month, and NOW she only has her blood drawn once every 3 months!! That is AWESOME!!!

However, blood draws are never "easy". I took her yesterday, and they had to poke her 4 times!!! Guess what! They still didn't get enough blood:(. It makes me so sad to see her poor little arms all bruised as the tears stream down her face...and mine! It's been a long time since I have cried at a blood draw. However, yesterday all Emma wanted to do was go to her BFF Brindi's house. We were on our way there, but I told her that we had one stop to make first....when we pulled up in front of the hospital, and I went to get her out of her car seat she said, "NO, Brindi's house". The whole time that they were trying to draw her blood she just kept saying "NO, Brindi's house" over and over again!! Afterward she received 10 stickers, 4 suckers, AND she got to go to Brindi's house! Anything you want baby girl!! You are my tough little princess!

1 comment:

BillyBob said...

That just chokes me up about her being a hard stick. My daughter is too, and now at 23 after a nearly life ending illness last spring, she is on COUMADIN! She has to be poked every two weeks for the remainder of
a whole year, which should end May 1st. I had a blood draw yesterday, and I HATE it. Emma sounds like a very brave girl. Bobby, not the liver