Thursday, October 08, 2009


It has been a while since I have shared some updates, so I guess I better get to it...

Back in July, we started the process for Emily's wheelchair and a Leckey Seat. We are still waiting on that. Bear with me while I vent about this for a minute or two...

We started the process with our Physical Therapist and Equipment Guy (that is what we will call him). Our pediatrician then had to send some paperwork to Equipment Guy. The doc's office sent all of the paperwork except for one page, only they didn't realize that they forgot that page. We called Equipment Guy mid-August to check on the progress on the chair and were told that they were still waiting for the pediatrician. When Mike called the doc's office they figured out that they forgot a page. Apparently Equipment Guy could not call to say "hey we got everything but one page" - that would just be a waste of valuable time! Anyway, the pediatrician sent over the missing page. I then called Equipment Guy at the end of August and was told that they were waiting on authorization from Medicaid. Called back again in the middle of September and was told they were still waiting. So I called Medicaid to find out what was taking so long. I was told one item was approved in August and that they had no outstanding requests. Called Equipment Guy back to let them know and found out that the wheelchair was submitted to Medicaid on 9/2 (even though I was told at the end of August that they were waiting for approval) and the Leckey Seat was submitted on 8/27 (that was the item that had been approved by Medicaid). So, long story, even longer...Equipment Guy had to re-submit the wheelchair to Medicaid and we are back to square one with that. UGH!

The bright side to the story is that the Leckey seat came in. I won't tell you the really long story about how we have basically been waiting for that chair since February. Yesterday, Mike picked up the chair at the office. Woo hoo! We really like it. Emily is still trying to decide if she likes it. It has lots of options and really gives her the support she needs. Her legs are not quite long enough to reach the foot pedals, but we have learned to improvise. Check out Emily looking like such a big girl in her new seat:

Today Emily saw the nutritionist, so we were able to get her latest stats:
Weight: 27 lbs 14 oz
Height: 36 inches

This month, Emily actually lost 3 ounces. I am not sure if that has ever happened (besides maybe in the NICU). She dropped just below the 75th percentile for weight. She manages to hang steady at 95th percentile for height. That might explain why the sleep sack that I made for her is this long:

We are making some changes with Emily's therapy. We have decided to switch from aqua therapy to hippotherapy (therapeutic horseback riding). Emily will start on Tuesday. We have seen improvements in Emily since she started aqua therapy, but we just didn't click with that therapist. She has been pretty tough on us and Emily right from the beginning. We could deal with the fact that our personalities did not click, but she just seemed to be getting more and more negative about Emily. We would happily switch to a different therapist, but she was the only one that we could work with there. Plus, she pushed us to move to hippotherapy (Mike's impression was that she doesn't want to work with Emily because she doesn't see the progress that she would like). I do not want to take Emily to a therapist who only notices the things that she cannot do and doesn't believe in her ability to achieve. So we hope that the switch will be a great benefit to Emily.

Other news:
Emily has been a little sick lately. Last week she started to get a stuffy nose and a little cough. She had a low grade fever one night, but that was it. She was a congested boogarhead! She decided to share her germs with me (how does that happen when Mike spends all day with her?), so we both laid low over the weekend. We watched movies and took naps - it was nice! She is sounding better each day, but still sounds a little gunky. We still suspect that she has seasonal allergies so that could be the culprit. She takes Children's Claritin right now, but we will talk to her pediatrician next week about trying Zyrtec instead.

While Emily was sick, she still continued to sleep well. Last night, she decided to break that good sleeping streak. At about 3:30 in the morning she woke up and just started making noises - happy noises. She was chatting away and making this little clicking noise that she makes when she is happy (she clicks her tongue against the roof of her mouth). She did this for about an hour to 90 minutes. I put a toy of hers in the crib so she could entertain herself - it is a Rainforest that has lights, plays music and has a monkey and a frog in it. I put it on twice for her and then tried desperately to go to sleep (haha). I did hear her turn on the toy by herself at least twice. That is a major accomplishment for her! The cute little display during the wee hours really just reminds me that we need to move so Emily can have her own room, but that is another story for another time.

Apparently the lack of sleep didn't agree with her because she decided to throw a fit this morning when Mike put her in her Leckey chair. I think she cried for about an hour. Mike was trying everything to calm her down and she would not have it. He did end up putting some Anbesol on her teeth and a few minutes later she was calm (we think she is working on the top canines - oh the joy of teething!). It was a very exciting way to start off a busy day (she saw 3 therapists today - all at our house).

Well, I believe that is all to report for today. Here are a few more pictures just for the fun of it: You can't really tell, but Emily had a headband in her hair. It was worth a shot, but didn't work very well. She grows like a weed, but she has a really tiny head (she must share that gene with her Auntie Lisa - haha).

Emily just before church (doesn't she look excited?). Notice, she is wearing SHOES - I am a rebel, I know! That is actually the only pair of shoes that I could find that fit on her chubby feet.


Stephanie's Mommy Brain said...

I LOVE that last picture!! Ellie has some similar black shoes and they are adorable. :) Good job advocating for the chair!! I think people in the medical field often forget that for them it is a job or career but for us it's our LIFE.

Hey! Any closer to finalizing plans for your RI trip?

Jenkins said...

She looks great in her new chair...very cool.

Horseback riding, that is exciting. Here in Northern VA the waiting lists are about 3 years for the few facilities that provide it. Have fun and I cannot wait to hear about it.

Cute in the shoes.

Michelle said...

Sorry for the frustration with the equipment :( She looks happy in that first picture though!

Sounds like a good move to switch from aqua to hippotherapy based on the therapist's attitude!

Katy said...

Oh my gosh--if a therapist doesn't repeatedly tell me how awesome Charlie is, then I don't want to work with them. We have been spoiled by our good therapists and Charlie is a very hard worker. If they can't see that then we need someone else. I'm completely with you on the move to hippotherapy--wish we had that option around here. Well, I wish we had any options.