1.18.13 Back In The Saddle Again

Trying so hard to hold up her head and succeeding for a moment!

She is back!
So glad to say that, as of Wednesday, Aimee is back to her joyful self. The return of her laughter has my heart majorly rejoicing.

We had our first vision therapy session again on Wednesday since before Christmas break. The TVI was surprised how thin Aimee had gotten, but very pleased with her visual attentiveness. We covered our dining room table with a dark sheet and put the light box underneath it. With the extreme contrast, Aimee would immediately turn and focus on the spinning stripes on the light box and would look away every time they stopped. She also looked at the therapist's face briefly. It is amazing when she clearly takes in visual input!

Yesterday we took Aimee down to the Pulmonary and Sleep clinic. The doctor was concerned about Aimee being sick so often. Although nothing has come of the sicknesses, she is worried that it is only a matter of time. We were again strongly encouraged to give her a flu shot, as well as, to use antibiotics with each sickness. She did not at all agree with our philosophy of waiting until we see signs of lung trouble to take her in to be seen. The concern being that by the time we could clearly tell with Aimee, as she won't be able to give us many indicators, it could be too late.

Although we did not agree to give her a flu shot, we did agree to keeping her out of school through the flu season, which is currently predicted through March. I communicated with her teacher this morning and she is in full support of this decision. We will have the teachers come for home visits, but no classroom time. We will also consider taking her in to be seen early on in the next sickness as a test to see if what they give us helps her to recover quicker.

The doctor also prescribed two different inhalers to be used with an air chamber. One she wants us to use twice daily as a preventative against infection and the other to be used to open the airway during sickness. We will at least use these through this flu season, possibly through the school year. It does make me sad when I think about how proud I was 18 months ago to not have Aimee on any daily prescriptions. She is now on a minimum of 6, up to 11, different prescriptions at least once a day. Boo. However, I am thankful to at least have some type of preventative, aside from diet/supplements that we already do. Here's to successful prevention!

We discussed sleep positioning systems with the doctor (like the one on the right by comfyliftbed). When she is well, Aimee does pretty good sleeping on a slight incline, but it isn't nearly enough when she is sick. We try to prop her up with pillows, but it doesn't work very well. The doctor said she would discuss the options with the rehab clinic and Aimee's Neurodevelopmental doctor to help her determine what might work best for Aimee. This could also help prevent respiratory infection.

We also met with the sleep clinic technician regarding Aimee's BiPAP machine. We feel like the humidifier portion of the machine is actually contributing to her sicknesses. They agreed to let us do a few day trial without the humidifier, since Aimee has a lot of secretions. We also needed help troubleshooting her mask as it has been cutting open the bottom of her ear every night. We are going to try to jimmy rig it with an ace bandage to see if we can stop the cuts. If it isn't one thing, it is another with this machine!