Tuesday, May 03, 2011

A-B What?

Since I last posted I have turned another year older and wrapped up the Strides for Epilepsy-North Colorado 5K all in one weekend to name a few happenings. I am going to with hold my post on the event and all the INCREDIBLE friends I have until the final fundraising details are in.  We kicked ass!

Aliza Mae is growing like a weed. She is still funny as hell and her newest phrase that cracks me up is calling Greeley, Greasy. She makes sure to ask how happy my heart is amongst a gazillion other phrases that melt me throughout each day. She is mine; all mine! No sharing her with therapist, teachers, doctors, and the rest of the support system that I have learned to appreciate and admire sharing Ava with.

We have added a few more naturopathic products to Ava’s day including a pancreatic enzyme that appears to have changed her gut issues (heard of the gut connection?) almost immediately. It is very new for us so I will post more details (on everything she is and isn’t taking now) when we have been at this a bit longer. She will be seeing her neuro/psych’s personal Cranial Sacral therapist next Monday too. She teaches for the Upledger Institute which makes me very comfy giving this a shot.

Her transition and ESY meeting is also a fading memory. Ava will head to Pioneer Ridge next year for kindergarten; I think she is ready to be in school all day but don’t think a modified schedule will happen. We will transition to her new providers by spending her ESY there in June/July. I signed her up for the bus too…we will see if this comes to fruition.

It should be a positive move and it has taken me a while to find peace with this place. She needs some quiet center time to get academic work done and I like the special ed teacher. The biggest IEP change in the transition is that she will move from consult to direct vision services next year. She actually has a wonderful TVI who has been providing direct services this year anyways and acknowledged that she may be a Braille reader. No one is sure how they are going to get all the appropriate services in while providing time for classroom activities in a half day at this point. Who knows, I no longer get excited about this until the time comes to do so.

Ava’s SLP/Audiologist has also requested that we have an ABR test done to figure out if she has hearing issues to compliment those vision problems. Don’t worry, this isn’t a surprise. My good friends at Anchor have asked, and asked again, if I was sure she was processing hearing correctly. It’s a crap shoot similar to her vision, some days she localizes, some she doesn’t. There are a few other things going on like sound sequence issues. When you have apraxia/poor motor planning things get sticky.

The procedure is similar to an EEG but requires sedation.  I hope to have it done at the end of her EMU stay coming up in the near future. I still have no written correspondence about her neuro/metabolic appointment except for the lovely we billed your insurance company over $6,500 letter. It is par for the course, I would be surprised if we didn’t have to move on to more evasive testing to find something out. This certainly isn’t our first rodeo.

She is also on the move and in need of her cane, using it that is. DANGER, DANGER! She fell down the stairs on Easter, all 13. She bounced off the window at McKee leaving OT the other day as she was trying to walk through it. O&M will be our summer friend.

I miss my blog. And yes, my thoughts and life are as scattered as these posts. Miss me too?

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