Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Sunday, February 22, 2015

Ways to stay part of it all

Just one of the neat things about our "village" is our ward (LDS local congregation). I am pretty certain we belong to one of the most thoughtful wards there is. I have been so amazed at the generousity, patience, acceptance, kindness, thoughtfulness and love we have been shown. 
I say this because just recently it has been proven again and again. 
My girls are picked up each Sunday so that I can be home with Alex to give meds. Then Alex's incredible primary teacher comes to our home. She has such fun lessons planned and prepared. Her hubby comes to drop her off and he is such a fun visitor as well. They have visited him in the hospital, helped with his program part, taught him articles of faith, played with him(that's important too), and loved him. The young men bring the Sacrament to our home. It fills our house with such a wonderful spirit. It is an amazing way to feel connected to our beliefs and strengthen us for the rest of the week. 
That's not all. In about 2 months Alex will turn 8. He will have a choice if he would like to be baptized. He will have to wait until it is safer. Because he is on such high doses of anti rejection medications and steroids he has absolutely no immune system. This means he is pretty restricted on places he can go. Home and hospital are the only indoor places he can visit. So he will be baptized in August. We did Facetime in order for Alex to be part of the "it's great to be eight" meeting. I can't believe he will
Be in cub scouts. He gets to have a special Cub Scout leader who will come to our house to start him in the program. We will get him the shirt and book, I will try and stay out of it, but it sounds fun even to me. One of his leaders brought over his Pine wood derby car. He and daddy already scanned the Internet looking at ideas. He can't wait!!! 
There have been so many helping hands for meals, help with the girls, special treats, cleaning, dates to help the girls feel loved.... The list is endless. I have had to readjust our freezer situation to have enough room for all the amazing meals. Maybe I am a terrible cook or maybe it's because I didn't have to make it, but everything tastes really fantastic. 
We could easily be overlooked or even be so hard to accommodate because of our situation. Instead we feel included and loved. I am so thankful for inspired and wonderful people. Thank you for taking the time and energy to help us. 
My two sweet friends Jessica and Natalie even made my dream thank you gifts for our hospital friends.
Tomorrow is another clinic day. I am getting pretty good at driving around and not getting lost. I am really good at getting lost. Even in the grid system here in Utah. I usually take the exact same route and try very hard not to deviate at all. But surprise myself when I make it safely to the hospital, when I have had to change course a little. Gator loves to listen to talk radio in the morning on our way there. Funny kid. 

Alex's check up was awesome! We even got free Panda Express. Everything went great.. Biopsy Monday. 


Allissa said...

It was SO fun to chat with Alex for a bit last week! He looks SO good! We love reading updates on Alex and are so happy that he's doing so well! Keep getting better and stronger Alex!

jackie said...

Praying that Alex continues getting stronger every day!