5.27.10

Yesterday, during Aimee's weekly Occupational Therapy appointment, we met with the school district's resource coordinators for her 6 month review. As a part of the application to to the school district's program, the resource coordinators and I had set goals for Aimee. In every area from communication and motor skills to cognitive abilities, we wrote down a few hopeful targets. I am so glad that we did!

When I originally heard that her 6 month review was coming, I braced myself for major disappointment. I find myself wondering if she is changing at all. Other people always say that she is, but I just barely see it. Yet, as we sat there reviewing the goals, I was incredibly encouraged. Aimee had met almost every single goal we set for her. It was astounding to me. Visual tracking? Check. Responding to Ed and I's voices? Check. Batting at toys? Check. Cooing? Check. Verbalizing moods? Check. And so on. She kept knocking them out of the park! WOW! Good job Aimee. A++++++ on your report card!

5.25.10

We made it through a lap of appointments yesterday and as you can see one of us made it through smiling!

We finally got Ed in for an appointment with the Naturopath to figure out his sleep issues. He will be going in for a sleep study and blood work to determine if he has sleep apnea or a strain of narcolepsy. The doctor actually thinks it is likely sleep apnea and may be as simple as removal of his tonsils. If this is the case, it would be a huge relief, as he has been struggling with major fatigue his whole life.

Aimee also met with the Naturopathic Pediatrician in the morning for her 15 month check up. She is staying on track with her physical health. She weighed in at 23 pounds (50th percentile) and she is quite tall at 32 inches (90th). Her head is still growing well below the curve at 42.5 centimeters (still growing though!). The only concern that the was raised during this appointment was her head shape. Owing to the fact that she is unable to support her own head, she is continually putting pressure against one side of her skull. It is starting to flatten on the the sides and back slightly. We may go back to Craniofacial to discuss the options for positioning pillows and a helmet.

Next, we met with Genetics. No new information here. All the blood tests that have been run thus far have come back normal. They requested 2 new DNA studies to be done for 2 syndromes that have similar symptoms to Aimee's case. Again, these will take a few weeks to find out if insurance will cover them and then a couple of months to get results. A swallow study was also ordered to be sure that Aimee's low muscle tone isn't causing her to literally inhale food/liquids when she is eating. This may also provide helpful tips for us on the consistency of food/liquids that would be best for her. We were also able to get temporary disability codes to apply for SSI and reapply for financial aid. These will be adjusted when a true diagnosis is found.

After that appointment we met with Orthopedics. This was actually a nice, quick appointment. The doctor said that her feet and joints look beautiful. He was so pleased that he pushed back her next check up with him for 6 months. We are not dissapointed to have one less appointment to drive down for!

Checked on Orthotics and everything looks great there. We will not need a new bar or shoes for a few months.

This next week we will be with Occupational Therapy and Neurodevelopmental. We are praying for God to bring wisdom to the doctors and unravel this conundrum. Feeling a bit overwhelmed myself. I am fairly certain that my brain is crossing wires and confusing signals. Also, please be praying for Ed and I. In the midst of all the pulls for our time and attention, we don't want to lose sight of eachother.

5.13.10

Received the blood work results back from Endocrinology yesterday by mail. The letter simply stated that all the results were normal and that we would hear more at the follow up appointment with this department on June 9th. Honestly, I'm not sure what this means.

I have recently received several applications to attend seminars and retreats for families with blind or severely visually impaired children. It reminds me of why we are hoping to find a diagnosis. Without it we can't apply for disability or obtain approvals for these other types of resources. Lord, give us the perseverance!

Our next big appointment day is May 24th. I will update again after that.