Thursday, May 8, 2014

Embrace life

Well it has been a couple of weeks since I last wrote and a few new items are in the works.

Zoé continues to thrive at school and in her daily activities despite the challenges of fine motor skills that impact writing.  I know, she is only in kindergarten, but holding a pen is essential.  It impacts her abilities to write, color and draw. I am not pushing her though.  Hopefully she will continue to make progress.

Reading is also challenging. Dragging letters and sounding words is difficult. Because her articulation is impacted, perhaps she cannot produce those sounds.

I am trying to focus on articulation. Also asking Zoé to keep her mouth closed when she eats. All these small minute details of daily living that we take for granted. I never thought I would have to teach my child to keep her mouth closed, to repeat: M, B, P sounds to help the bilabial speech. These consonants are so hard for Zoé.

As the school year draws to a close, we are looking at camps. Funny enough other moms are talking about academic camps, math camps, athletic camps. We have no choice as Zoé must attend the 4-week long school camp during which she will get all her services: OT, PT and speech.

The new amazing activity we have going is adaptive swimming. Zoé's APE ( Adaptive Physical Education) teacher also coaches swimming and I asked him whether he would consider teaching Zoé. It is awesome. We are in the water every Monday afternoon.  Zoé is like a fish in water. He is amazed at how comfortable she is.  Going down deep to retrieve toys, blowing bubbles, finning her way across the pool to the deep end.

I have now realized, and well as one says,  "live and learn" that Zoé performs MUCH BETTER when I am not around. And this is across the board: during OT with Liz, choir practice, swimming class, therapeutic riding, etc. otherwise she seeks my attention and doesn't focus as much.

The last couple of months have been quite busy and I should fill you in.
- We went sledding in Tahoe.  Zoé's first time seeing snow...
- We rented a house in Monterey for a girls get away, with Zoé's BFFs.  Enjoyed biking, the beach     and seal watching.
- The farmers market is now part of the routine as summer fruits and fresh corn are on display.
- New braces are in after our Shriners run.

The big news is our next trip to Salt Lake City. Zoé and I are flying on June 3rd and back June 6th. We'll be lodged at the hotel on campus.  She is being seen by a team of researchers at the Universisty of Utah.  They are conducting a study on children affected with Congenital Myotonic Dystrophy.
Zoé will receive a variety of medical tests and assessments including a physical exam, vital signs, blood draw, DEXA scan to measure bone density and lean body muscle mass, an ECG, Physical therapy assessments, speech and neuropsychological assessments, and a variety of questionnaires regarding quality of life. The clinic day should take approximately 5 hours each day.
Maybe we will have time to visit Salt Lake and I can take Zoé to the Mormon Tabernacle...I've already been there once but walking around the grounds is quite nice.

As far as entertainment goes, Zoé's horse show is coming up, on May 31st, and before that Zoé is going on a field-trip with her school. This weekend she is also performing in her play (Charlie and the Chocolate Factory), she is an oompa-loompa!  So fun days ahead.

Girls are sledding away

Doc Mcstuffin is at Shriners Hospital

Piedmont Town Hall

Casting the footsies

Maman has long legs

Voilà dear Blog readers, these are our latest news.
We hope this finds you all well and enjoying the first few days of spring.
Will update you on the trip to Utah and Horse mania when we get back.
Love from our side of the blog to yours.