Ashley's Story

She will leave fingerprints all over your heart


1st Day

Tomorrow will be Ashley Kate's first day of school. Its official. I have a child attending public school. Honestly, I NEVER dreamed it would be our tiny, miracle girl that would beat the other two to it. NEVER in my wildest, but it is happening. Sort of.

The school district has finished all of its evaluations of our girl and have developed a plan of teaching to assist us. Each Friday(even during the summer time) our Ashley(and her mommy and daddy. They aren't too thrilled about the prospect of changing ostomy bags or line dressings and we aren't into the whole drive your kid to school and drop them off thing.) will attend school where she will receive physical and speech therapy from the teachers there. In addition to this they will be sending another teacher into our home 2-4 hours a week to assist her in learning all of those things she's never learned while also using sign language while instructing her. On top of these things we will continue with our private physical therapist each week and also will be bringing in a private therapist who is fluent in sign language as well. She is going to be one busy little girl. Really busy.

Interestingly our groups of teachers and therapists will be approaching her from two opposite ends of learning. This cracks me up. One of the things we LOVE about our private therapist is that she agrees with us that Ash needs to learn to be a three almost four year old. This is where we concentrate our efforts. Our new therapists aren't too interested in that yet. They want to teach Ash how to do all those things she never learned as a 3month old, 6 month old, 9 month old, etc, etc. That's fine too, its just different and to be told that "no she wasn't ready to learn what a circle, let a lone a red circle is yet because she hasn't learned to stack a tower of 3-5 blocks" just caused me to chuckle because she's already smarter then what they are giving her credit for. So our in home teacher will not be including learning shapes and colors on her goal sheet. Instead it will say "needs to stack blocks". Just something I found to be funny.

In addition to other things the school will be teaching her and us something called PECS. Its a system of using pictures to communicate rather than sign. Since Ash is not deaf they believe she needs to learn using assisted devices such as picture boards and voice things(not the official name for it, but I can't think of it right now) to communicate with others. It kind of makes sense. They keep pointing out to us that the "world" doesn't use sign language to communicate, but everyone could understand what Ash is saying to them if she handed them a picture or made a sentence out of a series of pictures. So this will be something new for all of us. Ash will no longer be allowed to point to what she wants or to just sign an object. She will be required to pick up the picture and sign it to us. This is going to be one smart girl. I really hope she begins to speak. This is alot like learning a new language.

There are a lot of things going on around here. Ash continues her vomiting and intermittent fevers. Her liver numbers are looking yucky, but she continues on full feedings with no TPN. She is doing "ok". Not great, but "ok". We are also officially in the house hunt. We have outgrown our tiny house and are having to seriously consider moving on. Not something we want, but desperately need to do as Ash's needs continue to change. She requires more and more "stuff" then we have room to hold. We have actually found a house that is double the size of ours with more room then we would know what to do with, but it would require a lot of work. Something we are willing to do if all the numbers work out, but this is just the beginning of a long process. Our hope is to have a larger place by the end of the summer. Anyway, just something we are beginning to pray about and seek out.

Allie just called to let me know she forgot her lunch. Guess I'd better get it out to the school so she's not starving. Hope you all are well. Talk to you soon.


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