Merry Christmas Eve!
Praying for a special blessing on you and your loved ones as you gather this weekend. May you savor the joy of being together.
Just a couple of updates from my last post. We were able to schedule an exam with the opthalmology department for the middle of March. We were also able to (after 5 phone calls, geeze people) get an appointment for a wheelchair consultation. Unfortunately, that is also for March, which means about 6 more months until we get a chair. Boo.
On an encouraging note, Aimee is talking more and more every day. It is WONDERFUL! We love hearing her voice her opinions, tell tales and imitate noises. It is finally starting to feel like we can connect with her. I want SO much more, but am definitely excited for the improvement.
12.16.10
-Victory Family Christmas Photo-Another disappointment this week. We found out we will not being getting a wheelchair ordered by the end of this year. After a frustrating set of delays with the home care company, we have decided to begin the process over again with Children's. Given their volume of clients, we are hoping that they will be better prepared to guide us through this order and through the insurance company requirements. I am really hoping that they will allow us to order the chair we had already picked out. After searching through catalogs and online retailers, it seems to be the best fit for us (plus, it is the coolest).
Tuesday, Aimee and I met with the Neurodevelopmental Clinic. Nothing new or exciting here. They still don't have any major revelations for us. He is going to allow us to have Aimee's eyes retested finally! It may not make any difference, but the hearing aids helped so much that I want to be sure there is nothing they can do. It has also been a year since we were last there.
He is also recommending that we start taking Aimee to the dentist, since she will soon be 2 years old (yikes!). I am hoping that our regular dentist will feel comfortable treating her.
We had her head measured again while we were there and it looks like she has dropped the slightest amount on the percentile chart (from .29% to .26%). When you are barely on the chart though, those little numbers make a difference. The growth curve is flattening out for her, as it does normally at this age. Too bad, I was hoping for a bit of catch up.
Next week Aimee will be having another Chiropractic exam. Maybe we will be able to switch from two adjustments to one a week. Maybe. We are also hoping to go in very soon and meet with the Physical Therapist down at Children's to get this chair order rolling.
These next few weeks should be nice and quiet on our front. Occupational therapy is on break as of the end of this week, as well as, the school district.
12.9.10
-Daddy and Aimee before bed time-We received several test results back this week-all normal. First of all, the CMV test that we had authorized 3 months ago, which we were pretty excited about, came back negative. Almost all of the symptoms for this disorder matched Aimee's situation...but here we are. Also, the hormone tests and bone age tests that we had taken 2 weeks ago came back normal.
While it is nice to rule out possibilities, we seem to have ruled out all of them now. Tuesday Aimee and I will meet with the Neurodevelopmental clinic again. I am not really expecting anything extraordinary from this however. There doesn't seem to be any stones left to turn over. It is very disappointing and discouraging.
In other news, we would like to teach Aimee that she has the ability to make choices (i.e. does she want to read a book or play in her activity room). In order to get to that place, we are attempting to teach her an association between an activity and an object. For example, last night before we gave her a bath, I brought her a wash cloth. I rubbed it between her fingers and gave her a chance to smell it. Before we give her a taste of food, we will give her a syringe to feel. Eventually, we will also have objects for her to associate with places we are going to go or people who are coming to visit. The hope with this would be she will understand what is going to happen next. Eventually, we would present her with 2 different objects and watch for her sign that she chooses one.
We decided to go with a blue wheelchair. Out of the 3 options, it seems to go best with Aimee. We are still pushing to get it processed and ordered this year. Please pray that this order would go through the insurance company smoothly.
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