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.

Wednesday, December 18, 2013

Ship shape

Monday we ventured to school. Munchie stayed with friends and I took Miss May. Oopsie, I forgot the stroller so I lugged the half child and May around. Or followed her closely as she walked the halls. It was an eventful day for the office and I hated being one more worry. Let me add here that our school is exceptionally amazing. The principal, office staff, and support staff (lunch ladies, play ground aids, phycologist, librarians and other teachers who know of us) are so thoughtful and helpful and don't make me FEEL like we are one more worry. But I wasn't born yesterday people.. Having an extra couple of not invited, non helping loops around can cause some stress. I am so glad for their continual support.
My momma heart could not be home and be worried the whole time. I watched him stroke and I was helpless to do anything. That is a yucky memory that I can't erase. Try try try as I might. Leaving him for long periods of time, will be a struggle I am going to have to work through. 
We went for 3 hours. Some of that time was filling in his sweet class about how he is doing and answering their questions. They were good questions too. We explained that they couldn't get Alex's sickness. We also talked about why he was gone for so long and why is brain 'went to sleep' and thanked them for the mail they sent and little gifts. That sure can make a person feel a lot better. He also told them about his shots. Getting his whole class to laugh when he said he gets his shots in his legs not his bum (turn around wiggle wiggle) -he is a clown.... At the end of the time he was really ready to be done. Tired and ready to lay down, hungry for a snack, thirsty, and having leg cramps. Those 3 hours were pretty long. The rest of the day was hard. He was cranky and whiney. I was impatient with him on multiple things. He was doted on in the hospital and expecting the same treatment at home. Well it wasn't happening the way he envisioned. We decided no school today. Instead we worked together for 2 hours at home laying about and translating French math, reading and taking as many breaks as we wanted. We also went to the school for an hour while the little girls stayed home with our Home teacher. We met with the district nurse to update Alex's medical plan. The Secretary and Principal sit in on this meeting and yet again put my concerns at ease.... Or at least more bearable. I like the nurse, but he doesn't problem solve and soothe like the school team does. This makes even more grateful for them. 
Eden asks all day long to go play at the houses she has visited. Gator wants to go outside and play. Which he can't in red air days. The temps being so cold don't help. MayLee thinks she is the bomb diggity for walking, I agree. Ryleigh keeps everyone informed with her knowledge of what is going on, her ability to cope is inspiring. We are all regular nuts. Thank you all for your kind gestures of love and support. Jeff and I have decided to move forward with the evaluations for transplantation. We went over the packet-of-crazy tonight and find confort in our attempts to improve Alex's life. 
One of our awesome neighbors (who happens to be a heart grandma) brought over Mrs. Fields cookies...that is Homer therapy in a nice brown bag. 


Lisa Pantera said...

I have been following your story for a long time as I had an HLHS baby too who's a little younger than Alex. She had her Fontan last May and shortly after that it was very clear that we needed to go the transplant route. She received her new heart last November and we really haven't looked back since. Best of luck as you continue to explore all your options!

likeschocolate said...

Hang in there sweet friend! Hugs and kisses from Atlanta!

sarahgurl said...

I know French if you need help homeschooling! Loves to you all

berrymom said...

Hugs and love to you. I read every word and my kids ask daily how gator is doing (especially Estella). You are in our prayers and thoughts and hearts. Loves!