Tuesday, June 23, 2015

Just stuff

I don't know where to start, all I know is that I have let you down for a while.
So much has happened, and though this blog is about Zoé it is also about a lot of "stuff", the daily load, the ups and downs, the challenges, the good and the not so good, but above all about our life.

Utah 2015--Round 2 was awesome, as usual. The dream team of nurses and doctors, of Speech, Physical and Occupational therapists were above and beyond amazing.
You know why they deal with pediatrics, because it is what they do best. It is hard, to see our kids poked and prodded, but yet handled with so much care and consideration.

The last visit to our new pediatrician's office was unbelievable. She didn't even look at me, the mom, but looked at Zoé as the little person, the patient asking her a plethora of questions about her life, school, her family, etc. and then asking her whether it was ok if she discussed Zoé's medical condition with me! Who does that? Unbelievable.

On a side note, the doc asked Zoé: "What do your parents do?'
answer from Z: "Well, my mom she mainly cleans...and my dad he is on the computer a lot, and he is really funny when he does the chicken dance..." Oh my G-d....I contained myself to not burst out laughing...and was thankful that she didn't go on giving more details.

Cranio-facial follow-up not much to report. Zoé's sleep study went fine and her oxygen level stayed at 94%, so we are all good.
The bad part is that she needs braces...I do not know how she will do with a retainer in her mouth when she cannot stand a cleaning. But being Zoé, and the trooper, she will probably do fine.

Remember the helmet, she did great.

I didn't do so well, at first, but then it became part of the routine. The orthotics, same thing, the Kinesio tape on the feet, easy! The glasses, piece of cake.

Neuro-Study at Stanford and muscle biopsy #2 done and healing.

Hard to know how much I have changed. I can see it in my calves, the atrophy is rampant, and the lack of balance and the lack of stamina.
I tried a gluten-free diet to see whether it would help for energy level and in fact it didn't do anything.

Back to eating more protein and sleeping more for energy preservation.

Neuro-Psych Eval: NO AUTISM !  Oh my gosh, we met the most amazing doctor yet. Unbelievable. she feels that Zoé is super smart in the way she navigates her world. How she sees it in such a way, it takes people years to do so. They pretended-play together and in every situation Zoé had one of her characters in a wheelchair, it is part of the woundedness, how she transcends it and accepts it the way it is for her.
I asked the doctor why Zoé never drew hands on the people she drew. Simple answer, because for Zoé, hands are difficult, the fine motor skills are not quite there yet, so why bother with the hands.
The doctor will come to our IEP and gave us practical ideas for Zoé to preserve energy. We'll discuss it with the team upon returning to school.

Graduating to 2nd grade we are proud of our champ who finished the year beautifully. The reading has picked up and so it is all good. We need to still practice, but I will be sure to take a lot of books with us to read, and the math games we do.

We are leaving for France on the 1st of July, it has been one year and way too long.
We cannot wait to have NO therapies, to sleep in, go to the beach, to see the cousins on the Swiss border and Italy with Daddy-O.

Come a long way? Oh yes we have!!!!

have a blissful summer and we'll see you back on the blog in the fall.