5.27.11
-Aimee is having an Open House!We'd love to have you join us to
celebrate her wheels!-
Monday morning Aimee and I were able to have a follow up appointment with the wheelchair company and received all but one of the missing pieces. The adjustments with these additional parts have made the chair fit her better. It's nice to see her sitting up so tall and straight. The only thing we are waiting for at this point is a neck piece, which will hopefully come directly to us in the next few weeks.
Monday afternoon we met with Orthopedics and Orthotics departments for a club foot treatment follow up. The doctor is very pleased with the look of her feet and ankles, which is good because we have been so faithful with using the bar every night. Not always the full 12 hours that they have asked for though. She also got a new pair of shoes from Orthotics while we were there.
Wednesday Aimee did really well in her Occupational Therapy appointment. She works so hard with the abilities that she has been given. It is amazing to see, but REALLY testing my patience. She does learn new things, but it takes a very, very, very, very long time of repetitive action. I know that I should be happy that she is making progress, but when it takes a year of work to see slight improvement...it's really discouraging.
Yesterday we met with the Audiology department to get new hearing aid molds made. It takes 2-3 weeks to get them back and the molds she has are already starting to fall out of her ears. Hoping that we will be able to get the hot pink ones again. They looked so cute on her.
Aimee has been on the seizure medications for 4 weeks now. We are still increasing the main medication every 2 weeks, but she hasn't had any major reactions to date. It does seem to be affecting her digestion some, however, the main difference I've noticed is that she has dramatic mood swings. Although, it is hard to know if this is due to the medication or if it is just those cysts in her ovaries acting up again. We'll be meeting with Neurology to discuss how the medications are working at the end of June and to review the results of the brain MRI that she is having that morning.
I contacted Neurodevelopmental last week, because I had been reading through old clinic notes and saw that there was one syndrome in particular that they decided not to do further testing for because Aimee wasn't (or we thought she wasn't) having seizures. I was able to speak with the nurse on Tuesday and we discussed having the test done. It is an expensive Chromosomal sequencing test that takes about 2 months to get results on. Aimee has all of the symptoms of the syndrome (and more), however, her case appears to be much more severe. We have decided to hold off on this testing for a couple of weeks until we meet with the Genetic Neurologist hoping that this doctor will have more insight. When I read about all these difference disorders, it really seems like Aimee either has multiple syndromes or has a very unique situation. So many symptoms to match.
5.15.11
Embarrassed to tell you that I cannot post pics today of Aimee in her new chair. I promise I will soon! However, the main point is that she does have it and she loves it! We were able to go in a week ago Friday and meet with the Durable Equipment department to do the final fitting. It took a few hours and we found out we are missing 5 pieces, but they let me walk out the door with it! It is so wonderful. It rides really smoothly and has a great canopy that covers her whole front with a nice window so she can still see out. It also spins around so that she can either face us or face out.
Having it has made us realize that there are some changes that we will have to make soon. We will definitely need to build a ramp up into the house and maybe get cement/concrete for the driveway. Ed is also looking into some kind of a ramp for the back of the tahoe. Although it isn't necessary, because I can lift it by myself, it would make things easier.
Wednesday of last week, Aimee and I spent the day at a conference in Tacoma. The workshop we attended was focused on children with multiple sensory disabilities, specifically hearing and visual impairments. It was really fun and helpful. We did lots of activities with blindfolds and ear plugs in to simulate the disabilities. Several of them we had partners who couldn't speak to us, but had to try to teach us how to do an activity or craft. Amazing insight into how frustrating it would be to have limited sight and hearing!
We were able to spend 4 days last week in Eastern Washington with Ed's family to see his younger brother graduate. It was really neat to get a glimpse of what he has been doing and to get the tour of his labs/projects. Made me miss school though. Anyone want to take a class with me? :)
Aimee and I met with the Speech Therapist on Wednesday after her Occupational Therapy appointment. We had an evaluation done of her current communication abilities and what areas would develop next. It sounds like she will have a Speech Therapy appointment available once a week, although I am considering only having it every other week. Too many appointments! I am excited to get started with this though. Communication is the one area that I am most desperate to see improvement.
Thursday we met with the TVI. She brought over a new, smaller light box that will fit perfectly on the tray of Aimee's chair (as soon as we have the tray). She also brought over a flashlight with different colored lenses and a manual on how to use this type of light therapy. I really enjoy learning about all the different ways I can help Aimee...it is difficult sometimes to fit all the exercises in during her alert hours though.
We are really excited, because this week we are going to have insulation put into the floors of our house! Aimee spends most of her day on the floor (less now that she has the chair) while she plays in her activity room and exercises. It is so SO cold down there and heating up the house with no insulation underneath doesn't really help. We are hoping to be able to sand the floors down and refinish them very soon. Definitely don't want anything to discourage her from exploring her world.
Having it has made us realize that there are some changes that we will have to make soon. We will definitely need to build a ramp up into the house and maybe get cement/concrete for the driveway. Ed is also looking into some kind of a ramp for the back of the tahoe. Although it isn't necessary, because I can lift it by myself, it would make things easier.
Wednesday of last week, Aimee and I spent the day at a conference in Tacoma. The workshop we attended was focused on children with multiple sensory disabilities, specifically hearing and visual impairments. It was really fun and helpful. We did lots of activities with blindfolds and ear plugs in to simulate the disabilities. Several of them we had partners who couldn't speak to us, but had to try to teach us how to do an activity or craft. Amazing insight into how frustrating it would be to have limited sight and hearing!
We were able to spend 4 days last week in Eastern Washington with Ed's family to see his younger brother graduate. It was really neat to get a glimpse of what he has been doing and to get the tour of his labs/projects. Made me miss school though. Anyone want to take a class with me? :)
Aimee and I met with the Speech Therapist on Wednesday after her Occupational Therapy appointment. We had an evaluation done of her current communication abilities and what areas would develop next. It sounds like she will have a Speech Therapy appointment available once a week, although I am considering only having it every other week. Too many appointments! I am excited to get started with this though. Communication is the one area that I am most desperate to see improvement.
Thursday we met with the TVI. She brought over a new, smaller light box that will fit perfectly on the tray of Aimee's chair (as soon as we have the tray). She also brought over a flashlight with different colored lenses and a manual on how to use this type of light therapy. I really enjoy learning about all the different ways I can help Aimee...it is difficult sometimes to fit all the exercises in during her alert hours though.
We are really excited, because this week we are going to have insulation put into the floors of our house! Aimee spends most of her day on the floor (less now that she has the chair) while she plays in her activity room and exercises. It is so SO cold down there and heating up the house with no insulation underneath doesn't really help. We are hoping to be able to sand the floors down and refinish them very soon. Definitely don't want anything to discourage her from exploring her world.
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