Welcome to Allison's Web Page. It has been provided to keep people updated about our Child. Allison has a Genetic Disorder called Mucopolysaccharidosis(MPS)1. For her treatment, we chose an Enzyme Replacement Therapy (ERT) called Aldurazyme. Allison gets a synthetic version of the enzyme she is missing by I.V. Her infusions last about 4 hours and are done weekly. Sundays are her usual infusion days! She will have these infusions every week for life or until there is a better treatment.

Journal

Saturday, October 11, 2008 5:18 PM CDT

Wow! It has been a long time since I have updated Allison's site! Allison is doing pretty well. She is loving second grade and is lucky to have some good friends in her class this year. We decided that it was time to start using the FM system for Allison at school. The FM system attatches to Allison's hearing aides, the teacher wears a microphone, and when the teacher talks.. her voice goes directly into Allison's hearing aides. This will cut down on some of the background noise and make sure that Allison hears the lesson that the teacher is teaching. We just started using the FM system last week, so it is a little soon to tell if it is helping her yet...but hopefully it will!

We have been plagued with illnesses this fall! Our whole family had a flu type virus last week and we have also had a few cold already! This is a problem for Miss Allison! When Allison was intubated in August, it caused so much damage to the tissue in her airway that each cold she has gotten since the intubation has caused her to sound like she has CROUP! The damaged tissue in her airway starts to swell and she ends up whistling when she breathes! It sounds awful, and is very scary when she tries to sleep. Fortunately, one dose of oral steroids brings the swelling down within hours and she can breathe easily again. Lets hope that we can get well and stay well for a while! Allison could really use a break!

We went to the Pumpkin Patch on Thursday, and I was able to get some GREAT pictures, so be sure to check out the photo page!

As always, Thank you so much to everyone that checks on Miss Allison and says a prayer or two for her, we appreciate it more than you know!


Allison says:"I'm good and I listen in school and at home"

She thought she needed to type too :)

Read Journal History

Links:

E-mail Author: jennmarie@bis.midco.net