Tuesday, June 9, 2015

Visit To Children's of AL

The surgeon and nephrologist were very pleased with Maci's growth and weight gain since our last visit in September.  She has gained 4.5 lbs and is 2 inches longer.  **happy face**

There were changes made last December in how organs are "distributed".  It was not supposed to impact pediatric patients but the amount of transplants since December has decreased significantly at Children's of AL.  It will already be difficult to find a match for Maci because of her high antibodies making it more difficult for a kidney match.  It makes me sad that children are waiting longer now.  It's sad that anyone is waiting longer now.  

The nephrologist revisited the conversation on desensitization (decreasing Maci's antibodies to increase her chances for a match).  It's a process and there are risks.  We were all in agreement that it could be an option later on should Maci's kidney failure worsen but because she is doing well and even off dialysis, we will continue to wait and let her grow.  
We know that she cannot stay off dialysis forever but in the meantime we take each day we can get and enjoy it.  It has been very nice not having her hooked to a machine every night.  PTL!

Maci is such a good little traveler.  She's never fussed about being in the car but it's not often that she is in her car seat longer than 30-45 minutes.  The 4 hourish trip to Birmingham brought one episode of being unhappy and the same on the trip home.  As long as she picks the music, she's pretty much happy. 
AL bound.
Homeward bound.

There was no room availability at the Ronald McDonald House and we thought we were going to have to reschedule her appointment.  Thanks to the generosity of a friend, we were able to stay in a hotel.  Maci got to get in a pool for the first time!  When Maci was in dialysis and had her dialysis catheter, she could not be submerged in water.....no bathtub, no lake, no ocean, no swimming pool.  Since last December, she has been enjoying baths!  She loves the water, loves having her hair washed and loves being in the tub.  This weekend she had a joyful, screaming fit in a pool.  She even thought it was funny when her face went in the water.  The water was chilly but she still squealed and laughed through chattering teeth.  It was a fun, tear jerking 45 minutes for me to watch her play with her Daddy and to play with her in the pool.  I can't wait for her to have the opportunity to swim again.  
Ready to go swim!

In the elevator, on the way to the pool.

She had a BLAST!


  1. Awesome blog! I don't know Maci but feel like I do through her infectious smile and cuteness. Hope to meet the cutie pie some day. May God continue to bless you all.
    Michelle C.

  2. Maci, you just make my heart happy all over! Love you so much!!! Oh yeah, you're rockin' the Batman bathing suit!!!!

  3. Love this amazing family and their precious Maci Moo!!! God bless you all and thanks for sharing with us! ♡

    1. Thank you Melody! I am continually amazed at the number of lives Maci has touched & the outpouring of love for her. I know Jima, Rick & Maci really appreciate it & I do too!