3.11.11

-Picture of the chair, but Aimee's will be blue-

Aimee and I met with Physical Therapy's Durable Equipment Specialist at Children's on Wednesday morning. I was so pleased with how attentive and detailed he was. We were able to compare a few options, but ended up going back to the same chair we tried to order last year. I am so thankful that we will be ordering through Children's, because once we have the chair they will completely customize it to her needs.
When the appointment was over, he said that they should be able to get us a chair in about 4 months. Uhh. I felt like I was going to cry. Seriously? Thank goodness, because I felt disappointed enough to say...are there any other options? Here we have been waiting 6 months already, I wasn't sure I could make it 4 more. Then an amazing thing happened. He said that if I could pay for it up front they would be able to get it to us in about 6 weeks. Thank the Lord for this amazing fundraiser that enabled me to say "YES! I can!". Hallelujah! I can hardly wait to get the chair!

We were also able to pick up Aimee's new hearing aid molds from Audiology while we were there. They fit great. Not the right color and you can't really see the stars, but I guess that isn't really the point. :)

Wednesday afternoon was Aimee's Occupational Therapy. Aimee worked really hard and the therapist was very pleased with her efforts.

Thursday afternoon was Aimee's 2 year check up at the Naturopathic MD. We love this doctor so much. Aimee is growing quickly, as you can easily see. She is in the 95th percentile for height and about 60th percentile for weight. Her head circumference has increased by a half of a centimeter in the last 6 months, which is a very sad amount, but at least it grew!
Other notes from this appointment:
-He is going to write up a prescription for a suction machine, which I am really happy about. Hopefully that will prove helpful, especially for the times when Aimee is sick.
-He is also recommending that we begin Physical Therapy. It looks like Aimee's spine is beginning to curve, as she is always leaning/scrunched in one direction. I am hoping that having her fully supported in her wheel chair will help with this as well.
-He also encouraged us to ask the school district about starting Speech Therapy, now that Aimee is beginning to respond and listen.

Aimee is always keeping us on our toes with new things!

Please pray for us this week for direction. Ed's commuter car for work has officially died. We know God has a good plan for us and we are praying that He would show us what steps to take for a vehicle.
Also, we are pursuing having Ed's tonsils removed in pursuit of getting him good, quality sleep. We are working towards finding out if this procedure would be covered by our insurance. Thanks for your prayers!

-Aimee's 2nd Birthday-

3.8.11


I have so much to report from the last 48 hours...unfortunately I don't have time to fill you in at the moment. However, in case you missed the news, I attached the link to the clip from last night's broadcast. Tomorrow, Aimee and I are going down to meet with Physical Therapy's Durable Equipment Department! This wheelchair is going to happen!!!!!!!! Yippee and Hallelujah! I will have so much to tell you about it soon. Thank you thank you to each of you who posted link, shared the story and voted. You are making a huge difference in our lives at this very moment!

http://www.komonews.com/news/problemsolvers/117556838.html?tab=video

(For some reason I am having difficulty getting this link to work correctly... You'll have to copy and paste the link into your browser for now. )

3.4.11

Just spent a few minutes reading some of our blog posts from 2009, when we were first concerned about Aimee's development. Ugh...just reading the below post...it is exactly what I have been thinking about over this last week, those goals we set for Aimee. At that time, it seemed ridiculous to wonder. She would of course be able to walk by her 2nd birthday, right? WE HAVEN'T MET ANY OF THESE GOALS!!! Will I ever be able to face the fact that life will not go according to any plan I create? Thanks for praying for us. I am more blessed than ever by Aimee, but I want SOO much more for her. I want SOO much more for my relationship with her.

DeVoe Family: 12.3: "Yesterday we had 2 therapists and a resource coordinator come to visit. They will be coming over about 3 times a month to work with Aimee. T..."

3.1.11

Had to cancel all of our appointments for last week, because there was just too much beautiful snow! However, we were totally blown away to receive a used wheelchair from our new friends that have a gorgeous little special needs girl. This chair is going to help get us through the next several months until we are able to get one that fits Aimee's exact needs. It is a HUGE HUGE HUGE blessing!!!! We are so honored that God connected us with this sweet family. (Pictures coming soon!)

Yesterday, Aimee and I spent the day down in Seattle for multiple appointments. We met with Genetics, which was rather uninteresting. The doctor is referring us to meet with a Genetic Neurologist for a second opinion. We have already taken Aimee through the first and second tier of genetics testing with no telling results. There are more tests, but nothing that matches Aimee's situation. They are essentially admitting to having no more bright ideas.

We also met with the GI clinic and the Nutrition clinic. We had Aimee's feeding button changed out, which we will do from home every 3 months from now on. They were really happy with Aimee's growth over the last few months and even seemed to be a bit proud that I was making her food. What a change!

The really exciting thing that happened yesterday is that we were finally able to get a referral to Feeding Therapy! At this point, I have no idea what this will look like, but it is a step in the right direction. It may start with another swallow study and then probably add an additional weekly appointment. Should have more information on this in the coming weeks. HOORAY!!!

Don't forget to vote, vote, vote! Every vote in the cutie pie contest goes to support Aimee...every vote makes a difference for us! Please check out the 63 too cute faces at erincoxphoto.com/blog. They are guaranteed to brighten your day!

2.17.11

This has been one sick week in the DeVoe house. Kind of nice to get us all out of the way at once- like a family activity. Unfortunately, Aimee is still pretty phlegmy (Spell check says this is not a word. It should be a word.). It makes me a little nervous for her to be coughing and having so many secretions. I wish I had some way to help her clear out and to keep her from aspirating anything. If we get to tomorrow and she isn't clearing up, I may have to take her in...we'll see.

Had to cancel most everything this week because of being sick, but we did make it down to her Audiology appointment today to get fitted for new hearing aid molds. We decided to stick with the cute pink ones with glitter in them, but this time we are adding little silver stars! I know what you're thinking ,overkill, but the stars were so perfect for her...I couldn't pass them up! :)

While we were there today, they checked out her ears and noted that she may have an ear infection beginning to develop. Kind of neat that we went in and found out, because she has no way to tell me that her ears are hurting her.

Anyone have any natural solutions for these minor issues? I've been hearing about oregano oil a lot lately for colds/coughs, so I may be trying that. It just seems silly to take her in to the naturopath one week before her two year check up.

Baby Photo Contest Fundraiser

We are so blessed to have been chosen by
Erin Cox Photography
to be the recipient of a photo fundraiser.


It is free to enter a current photo of your baby 0-3 by emailing erin@erincoxphoto.com before February 28th. Then from February 28th-March 19th have your friends and family vote for your photo to win.
Each vote will cost $1 and all the money goes to Aimee!


Oh yeah, and if your baby wins, they will get a free photo session and a $50 print credit ($150 value)!
She also has a prize if you are an out of town winner.
Check out her blog for all the details at http://erincoxphoto.com/blog/.


Need some extra incentive? Check out the great photos that she just took of Aimee a couple of weeks ago.
http://erincoxphoto.com/blog/?p=2187

Amazing!

2.10.11

Had a great set of therapy appointments this week. Yesterday, Aimee worked harder than I have seen her work in months. She really was trying to hold up her head, even while in a simulated crawl position. Today, we saw the TVI again and she brought a little keyboard for us to borrow. Aimee lit up when she figured out how to hit the keys. So sweet!

I attached a video at the bottom of this post from yesterday. She was in such a good mood all day long. No nap and laughed through our whole evening walk/run. She has a great little sense of humor!

If you would like to get Aimee a little something for her birthday (2.26), we would love to have some items for her addition to her activity room. Below is a list of suggestions:
-Bubble wrap
-Textured material to pin up on the walls
-Plastic plates (2)
-Plastic mug with handle
-Buttons of various sizes
-Plastic mold from a chocolate box (the part that holds the chocolates)
-A spring
-Pot cleaner or sponge
-Bunch of straws (20)
-Funnel
-Set of spoons with holes on the end (like measuring spoons)
-Net bag with hazelnuts (or other nuts in shell)
-Rubber gloves
-Tambourine
-Fragrant dried herbs or flowers (ie lavender)