This last Monday, Ed and I took Aimee in for her anticipated swallow study. Ed had to come since it is an x-ray procedure and I wasn't allowed to (and didn't want to) stay in the room for it. They basically just get an x-ray video of her eating and see at what point she fatigues, if she aspirates (breathes in fluid/food) and what consistency is appropriate for her abilities. Aimee did really well in the study! She didn't aspirate at all. It only took her 3-4 swallows to get one bite down (compared to 8ish last time). She did still have food pooling in her throat, but she did well with it and was able to clear it.
After the study was over we met with the feeding therapist to come up with a plan for increasing the amount of food she takes by mouth. Over the next two months our goal is to have her eating puree consistency foods 3x a day up to 3 ounces in a sitting (90 mls or just over 1/3 cup). We are very excited to be able to work towards this goal. It will be a challenge though, a good one, but difficult for sure. At this point, Aimee loves to taste yummy things, but definitely does not associate tasting food with satisfying hunger any more (she has been tube fed for 14 months). We are not sure how far this will go, her main nutrition may be g-tube for a long time yet, or it may always be that way. Either way, I don't care, I get to feed my little girl more bites! Now I just need to expand her palate again beyond yogurt and fruit. :)
8.19.11
Wednesday Aimee and I drove down to Puyallup to meet with the therapists at Good Samaritan Children's Therapy. We were to have elbow braces and hand mits made. They had told me over the phone that since I was coming so far they would be able to schedule all the appointments into the same day. Sadly when we got there, they said that we would have to come back at least one more time. Bummer. They took all her measurements and let me pick out colors, which seemed a little silly to drive 2 1/2 hours for honestly!
The splints and mits are for use during therapy exercises. We have been putting her in a simulated crawl position to build up strength in her shoulders, elbows and wrists. She is getting so big now though that, without some supports or multiple people, there is no way do the exercises. Her hand motion is already restricted from lack of use, so I am hoping that by doing more weight bearing exercises we will be able to keep the motion she has. The other option is putting braces on her hands and arms throughout the day. It's hard to know how much she'll use her hands for moving around... is it worth it to put her through more for motions she may never use?
This morning Aimee and I met with the Pulmonary clinic in Seattle for a sleep consultation. We discussed Aimee's breathing patterns and her sleep habits. They were concerned enough to get us a priority sleep study (or Polysomnography :) fun words). Apparently they are booking out in February right now, but were concerned enough about Aimee to get us a study scheduled for 3 weeks out. Should be interesting to see what comes of it. Since she has such low muscle tone, she is in a high risk category for breathing problems. If she is getting poor sleep quality due to lack of oxygen and if we are able to fix the problem, it could even decrease some of the other issues she is having. As they were explaining to me, if your brain and heart don't get to completely recoup then they wear out faster, which can cause seizures, high blood pressure, poor development, ect.
It's all very interesting!
The splints and mits are for use during therapy exercises. We have been putting her in a simulated crawl position to build up strength in her shoulders, elbows and wrists. She is getting so big now though that, without some supports or multiple people, there is no way do the exercises. Her hand motion is already restricted from lack of use, so I am hoping that by doing more weight bearing exercises we will be able to keep the motion she has. The other option is putting braces on her hands and arms throughout the day. It's hard to know how much she'll use her hands for moving around... is it worth it to put her through more for motions she may never use?
This morning Aimee and I met with the Pulmonary clinic in Seattle for a sleep consultation. We discussed Aimee's breathing patterns and her sleep habits. They were concerned enough to get us a priority sleep study (or Polysomnography :) fun words). Apparently they are booking out in February right now, but were concerned enough about Aimee to get us a study scheduled for 3 weeks out. Should be interesting to see what comes of it. Since she has such low muscle tone, she is in a high risk category for breathing problems. If she is getting poor sleep quality due to lack of oxygen and if we are able to fix the problem, it could even decrease some of the other issues she is having. As they were explaining to me, if your brain and heart don't get to completely recoup then they wear out faster, which can cause seizures, high blood pressure, poor development, ect.
It's all very interesting!
8.12.11
We had our ultrasound for baby DeVoe on Wednesday evening and Aimee officially announced that she has a baby brother! :)
I've attached a short (5 second) video of him flexing his bicep for the camera, as well as, pictures of his cute little feet and profile. They estimated him to weigh 1 pound 2 ounces with a due date in mid December. He is a very active little guy and we are excited to get to know him more!
8.5.11
Aimee has gotten a few new pieces this last week. Yesterday we picked up her new orthotics. They are pink and called 'bunny' shoes. I find medical equipment more fun in cute colors and with cute names. :) The idea behind these shoe inserts is to help her with practicing standing. She will wear them in the stander itself and when we do therapy exercises. They are supposed to give her more stability and some sensory feedback. The only problem is that they are also meant to go inside of shoes, as the bottom of them is really slick...but they don't fit! I will have to do some shopping for a pair of wide shoes for her.
Monday we were also able to get the final piece designed to go with her wheelchair. (FINALLY!) What a mess getting this little piece! They kept having to give me disclaimers and have me sign paperwork about if our insurance wouldn't cover, ect. Funny thing that by the time we were done getting through all that process we had met our stop loss limit on insurance for Aimee...so insurance will be covering it all anyways. This neck support will be used while she is in the chair so that she sit fully upright and be completely supported when we are giving her visual stimulation and working with certain therapies.One of the therapist that Aimee has been meeting with through the summer is the Speech Therapist. She encouraged us to use a communication button with Aimee when giving her tastes of food or doing an activity. I recorded the word 'more' on the button so that, once Aimee understands the concept, she can tell us she would like to have or do more of something. We started working with it about a month ago. So far she really likes to hit the button, but I don't think she gets that it means anything.
Yesterday Aimee and I met with the school district again and officially committed to starting school in September (EEK!). We are going to try it out for 3 months and see if she is able to adjust to the environment. The good news is that if it doesn't work at all, they will have the teacher and therapists come to our home, at least for this school year. Nice to know there is a back up plan, since Aimee is a bit unpredictable.
Making a little shirt for Aimee to
announce the gender of her little sibling.
Hopefully it will be completed next Wednesday night! :)
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