- 459.81 dollars is what I got after battling the system and conundrum of insurance companies... to get Zoé's Horse Therapy covered, Yipeeee! I won the battle. Of course it doesn't cover much (459 out of 1800) but, as my beloved father used to say" Un sou est un sou" a dime is a dime...the cause isn't lost.
- This taught me to never give up, "the squeaky wheel gets the oil".
- Zoé's school year ends tomorrow, at Linda beach, and then she starts Summer Camp next week. It should be fun for her to be able to play and relax at daycare also, so that I can find some "Mommy Time".
- I have been able to paint a lot lately, and it is the best therapy.
- Yesterday, we went to her CCS clinic, to catch up and reconnect. We hadn't seen Kirk and Kitty for a year, and according to the system, Zoé is entitled to be followed by California Children's Services until she turns 21. After that, nothing is really provided. This is why we are making sure Zoé will have all she needs to take care of herself when she needs it.
- That makes me think of a few discussions I have shared in the past with my beloved "Moms of kids with Special Needs" support group. We often fear for the future. "What will happen to my child once I am gone?" Who will take care of Zoé?" when we are no longer here? I guess most parents have that fear, but when your child has special needs it exacerbates that fear. This is why in a way, I take my life one day at a time. No need to think about what will happen. We'll cross that bridge when we get to it.
- In the meantime, let's be trail blazers and conquer what we are faced with.
- This is another segway to write about the decision that we have made of not having another child. It feels odd to write it, to see those words typed on the screen in front of my eyes. It has been a decision in the making for the last two years or so (feels like an eternity), and the deadline came and crashed over my head. I turned 40, I have MMD-Steinert, and I cannot do that to my body. Also, I have come to realize that everything is going to be harder with Zoé. She is thriving right now and beating all the odds, but everything is going to take more time. She is a sweet, loving and fun little girl with a feisty personality and her own agenda...
potty training is not done
handwriting will be hard
sitting still another challenge
listening and following rules, good luck!
focusing, we're working on
eating with a fork and spoon, on and off
dressing and undressing
socks and shoes to put on
these are just little details of our everyday life, and I am sure Zoé is no different from other kids, though I see struggles where others have none.
Big accomplishment this month: Zoé got her first Horse Show trophy. Her best friends came over to watch as she trotted in the arena, and caught Beanie Babies to throw in buckets.
She is now taking swimming classes, and we stopped SNAP (Special Needs Aquatic Program) as we think Zoé is ready for strokes and really learning how to swim.
Summer time has arrived, and yet the plethora of therapies is still in session for 4 weeks (Extended services). Sam, our beloved PT won't be coming back as she was offered a new job at a Children's Hospital near Stanford. A real blow, we love all the dedicated therapists Zoé sees everyday, for they really make a difference in her life. Their care, understanding, flexibility, way of adjusting to our kids needs, their great sense of humor, motivation, ingenuity, the list is endless.
So long Sam. We'll miss you!
voila for now dear blog readers.
|At CCS with Kitty the Occupational Therapist|
|Zoe gets ready for her first Horse Show|
|Zoé got her first Trophy, yeah!!!|
|Her BFFs Sydney and Adair|
|Morning of the sleepover|
|Hey, that's my hat!!! Give it back to me|
|Zoé loves hotels|