11.24.10

-Aimee and her new bath chair-

Aimee and I braved the weather this week to travel to Children's on Monday and Wednesday this week. Always fun to add a bit more to that adventure!

We met with Orthopedics and Orthotics first. Her feet are doing exceptionally well. The doctor said if it wasn't for her heel scars, he wouldn't be able to tell she ever had clubbed feet. He is always very proud of his work. Aimee was also measured for a new pair of shoes and a new bar.

We then had our anticipated visit with the GI Nutritionist. She had performed her analysis of the blended recipes for Aimee's diet and...I passed! Yippee! She was so impressed that she treated me the complete opposite of last time. She said I could make substitutions and just make sure that Aimee was getting the average amounts of each category over a weeks time. I'm not sure what happened or if it was actually her malicious twin that I met with last time, but HOORAY!

Wednesday we went back down to see the Adolescent Medicine doctor. Mixed results from this appointment. Our concern is that she may be beginning premature or precocious puberty. She has grown 4 inches taller over the last 4 months (not a huge jump, but still fairly significant increase) and one breast has begun to grow again. There are, however, no other indications that this is the case. To be on the safe side, we had more hormone tests taken. The doctor also had us go into radiology to have x-rays taken of her hand. Apparently the main concern with precocious puberty is that following an initial growth spurt, the growth plates close preventing further growth. In order to determine if this is occurring, they are going to look at the plates in her hand and find her bone age. However, the doctor said that there is a possibility that she is not going through precocious puberty, but that she is just releasing tiny eggs causing cysts that in turn release estrogen. Oh my! That still isn't my favorite answer.

Two weeks and I will be able to call to see if the results have come in on the CMV testing. We shall see! Also, we have decided to proceed with the wheelchair order, pushing for it to be processed this year. I am very excited now that we have officially decided. It will be such a help and Aimee will love it. Maybe we'll get it in time for Christmas...well that might be a bit optimistic, but what a nice present :). Now we just need to decide what color-Red, green or blue. Any recommendations?

11.20.10

Aimee is doing great. She had her surgery on Monday and it went way better than we could have anticipated. By the time they called me back into the recovery room she was already awake and looking around. She woke up right on time! There isn't really an explanation for it, because they used the same anesthesia as last time. At this point, it doesn't really matter why.

They did have to burn off quite a bit of granular tissue that had grown around the tubing, but it seems to be healing fairly well. She will definitely have some scaring around the site. We've been working on adjusting to a new system and I believe have all of the kinks worked out.

We received Aimee's bath chair this week and used it for the first time this morning. It is going to make bathing her SO much easier. We still don't know if we're paying for it or not at this point, but we do have the funds to cover it. At that note, the hearing aids cost has been settled completely. Hooray!

I met with the home care company on Wednesday to discuss wheelchair/stroller options. He did bring over a couple of samples to look at and try out. We really like this one chair that is around 5,000 with all the support attachments she would need. It would probably last about 2-3 years, but you can get the next size up seat to fit into the base. We are praying about it this week to make a final decision this Wednesday. We are hoping to get one ordered and through the insurance process by the end of the year. Thank you for praying with us for guidance and provision.

Monday Aimee and I are meeting with Orthopedics and Orthotics to check the progress of her feet and get new shoes. That afternoon we are also seeing the GI Nutritionist to have the blended food we've been making analyzed, see if we pass their tests. Nerve wracking!

Wednesday we are going to meet with the Adolescent Medicine department again, because she has been having some unexplained breast growth again. It is probably nothing to be concerned about, but we just want to make sure.

Happy (almost) Thanksgiving!

11.19.10

I'll update more tomorrow on the goings on of the past few weeks, but I wanted to share this video of Aimee laughing with you. Enjoy!

11.5.10

Last week, Aimee was measured for a wheelchair. We are hoping that we can get a wheelchair/stroller combination. It would be a more lightweight, adjustable chair versus the traditional, upright (more expensive) version. The company is going to bring over a couple of samples for us to try soon. Kind of exciting honestly. Aimee will really love being able to sit up all by herself and be a part of what is happening around her. I will really love having something that can carry Aimee and all of her stuff as she grows.

Wednesday, we met with the school district to set new goals for the next year. Always a challenging discussion. We don't want to set them so high that she can't reach them...it's hard to come up with goals that are small enough that we are sure they are attainable. I really focused on the area of communication for this next year. I would love to see her understand that words relate to people and objects. Knowing that I am 'mama', what a 'bath' is, that her name is 'aimee', ect. Of course, I would love her to start saying words, but I think that is too big a goal for this next year. I would love for her to sit independently, but instead I am just focusing on her head, hoping she will be able to support it independently by this time next year.

The school district wants me to take several training courses designed for parents/teachers of visually and hearing impaired children. I can't decide if I actually have the motivation to do this or not. Of course, it sounds great to learn more about stimulating learning and literacy. However, from my experiences with the trainings thus far, it is like wading through a day of information to walk out with one helpful nugget. Plus, two of the trainings are 4 days long held in Tacoma and Vancouver, WA. Hmm...

Aimee has her final surgery for the g-tube on the 15th. We will be preparing for this next week with anesthesiology and gastroenterology. The week after surgery, we will be in meeting with Orthopedics, GI Nutrition and Adolescent Medicine (not all at the same time :D).