2.4.11

-Ed building an addition to Aimee's activity room-

We met with the TVI (teacher of the visually impaired) yesterday for the first time. Very interesting! She had several suggestions, but was overall pleased with how we are already working with Aimee. She provided us quite a bit of reading material, some on introducing the braille system, which we are unsure at this point if we will be using. She was particularly concerned that we did not yet have a fully supportive seating system for Aimee (a wheelchair). Aside from the mobility, she was primarily concerned about the support. She said that asking Aimee to hold herself properly, keep her eyes open and take in visual input is like asking me to eat lunch, make a sandwich and walk a tightrope at the same time. It is just too much to do at once. In order to allow her to use the vision that she has to it's complete potential, she needs to be properly supported. Nice to know, but it doesn't really help me get her a chair :). She will be visiting us once a month.


-Talking with Grandma Starla-

I am in the process of applying to attend a conference at the Tacoma Convention Center in May that will have sessions specific to children with multiple disabilities, especially vision and hearing loss. The school district really wants me to start attending these types of conferences and day sessions. So far, they aren't that helpful for us specifically, but I am still hopeful.

We have been having so much trouble lately with our home care supply company. Of course, you all know about the difficulty with the bath chair and then the wheel chair. Now the company that provides our feeding supplies is causing issues! After a 2 week process of trying to get supplies (the same ones that I order every month, to the same address), we still have received nothing. I am hoping to find a box on my porch when I get home, cause we are now completely out of feeding supplies! It should be a 48 hour turn around time. Oh my!

-All bundled and ready to run with Mommy and Daddy-

1.30.11

Wow, we are a bit behind on updating. The last month has been quiet on our front as far as appointments and changes for Aimee. We are continuing with the weekly occupational therapy and chiropractic. We have been seeing some improvements, but progress is really slow. Thank you to everyone who has been supporting us through this time. You have helped us to stay encouraged and to focus on the most important part-loving Aimee.
This Wednesday we are having a Teacher of the Visually Impaired (TVI) come over for the first time along with the therapist. If she feels that she can help us in any way, she will come to our house once a month.
We have been delayed yet again in the wheelchair process and will begin again in March. PLEASE pray that this time it will go quickly and smoothly.

Up and Coming:

February
2 year check up
Genetics
GI
Nutrition
2nd birthday

March
Opthalmology
Durable Equipment (wheelchair consultation)
Otolaryngology
Audiology

In case you missed it, below is the link to a Aimee's 2 year pictures taken this week:
{Aimee - 2 years} - Child Photographer | Skagit County, WA

1.21.11

I promise to update soon with what is going on in Aimee's world, but for today I wanted to catch you up on some videos of her little life. Enjoy!

-A Pat on the Back for Daddy-
December, 2010


-Good Morning Sunshine-
January 2011


-The Costco Noise-
January 2011


-Playroom Fun-
January 2011

1.4.11

-Aimee opening presents from Nana and Papa-

Happy New Year!

What a memorable Christmas and New Year we just had! Unfortunately, Aimee came down with the stomach flu just after the Christmas Eve Service at church. We settled in for an unexpected and very quiet Christmas weekend. We were disapointed to not make it to either family gathering. HOWEVER, we were completely blown out of the water by our family, who made huge Christmas sacrifices and came together to show us their support. We were and are still astounded by the love expressed. We are incredibly blessed.

For our Christmas we decided to let Aimee have her very first night all by herself at her Nana and Papa’s house. Ed and I had to go all by our lonely little selves to Port Townsend for New Year’s Eve night. While we missed our cutie, we really enjoyed the time alone together. Much needed!

We are now beyond the holidays, so it is back to the grind with appointments. Tomorrow we begin therapy again and are in the process of applying for a teacher of the visually impaired to come with the therapist once a month.

We are still at twice at week with the chiropractor, typically Tuesdays and Fridays. It is really hard to tell how much of difference this is making at this point. She is never able to hold herself in correct posture, so she is continually misaligned.

Thursday, I am taking Aimee to the dentist for the first time. I’m sure she will enjoy sitting in the chair all by herself, just hope she doesn’t bite his fingers!

12.24.10

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.