Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Thursday, July 30, 2015

Happy May May news

It's here FINALLY!!! The first day of school. Long awaited and so welcome for this momma. I am ready for the structure and age appropriate activities for Gator and letting the little girls play together. Ryleigh loves school and is always thrilled to go. Bless her for making it easy on me. As long as she has her new clothes and her perfect gear she feels ready, taken care of, loved and excited. I just can't believe she is in fifth grade. One more year until my life changes forever.. I will have a built in babysitter. And I pay really great! You need a new outfit? Awesome, daddy and I wanna go on a date, you want to go to the movies with your friends? Awesome, I wanna go on a ride. (one year *sigh*) 
Could we have found a more perfect backpack?? Turk-boys (turquoise) with Eiffel Towers, macaroons, and Vespas. 
 And Gator is seriously rocking his new kicks. They do make him run fast and jump high. Just in case anyone wanted to know. He tried them out, so I am aware of these features. 
Oh yeah!
He got made fun of today because he was so little.. But I said.. "Well you are little, and it's way better to be little than mean to others and make fun of people who are different". That seemed to make sense. 
He can totally rock his 5t shorts. And they are a little big on him:) 
Standing in line to go in. 
Look at this cute little guy in his new towel. Thanks Grandma!! 
Six weeks and wearing 3-6 months clothes.. He is growing like a weed. He is working mega hard to get big. It's very serious work. 

Yesterday MayLee had a CT of her lungs to help us see if she is improving. I took baby brother because, well, I am his groceries. 
We headed up to the main campus bright and early, checked in right in radiology and waited for a few minutes until May was called. Then she talked, sang and played until they put in her IV. 

She was not happy about it until the nurse brought in a huge treasure box and there happen to be Play Dough in there. 
She passed up a ballerina Barbie and a my little pony DVD for yellow and green play dough. She did fantastic. That is one of the fastest tests I have sat through. Like five minutes. Then when they were waking her up she was like a little slurred drunk. She kept saying "I was sooooooooo bbbbbrrrrraaaaavvveee"  she was cracking very nurse up. She was super happy and ate her Popsicle and then crackers. They wanted to keep her all day. 
The doctor called today to let us know the results. MayLee's lungs have significantly improved. She still has the ground glass opacities in her right upper lobe and middle lobe. Her left lobe looks clearer. She is still going to be on oxygen for a while. Until she can maintain her saturation level. BUT.... We are going in the right direction. Awesome right? I did figure out that I should get the smaller tanks and it has been so much nicer. 
And we will leave you tonight with this little milk drunk boy! 


MEL said...

Where did you get Ry's backpack?

Melanie said...

I'm so glad to hear that Gator is still wearing 5T shorts. I just bought Peyton new shorts and they are all 5T. He is definitely the smallest third grader but he is loved by everyone!

Heart Mommy said...

We found the back pack at Claire's and I totally agree.. They might be little guys, but they have stolen the hearts of everyone..