Well, I have been thinking about this for a long time-trying to settle in to what this feels like. Trying to wrap my head around what our day to day is going to /does look like and what the next few years will hold for our family and our little girl, Keelin.A short history...........Keelin was born in 2006 after several years of infertility and six In Vitro Fertilizations. It was a long road but we thought the hard part was basically over. At 9 weeks of age, Keelin stopped breathing. Long story short, after a brain and spine MRI, a diagnostic surgery and seeing many specialists (pediatric ENT, pediatric gastroenterologist and pediatric neurologist) Keelin was ruled out for brain and lung tumors and was determined to have low muscle tone, requiring physical therpay and GERD, requiring medicines 8 times a day. Her life was not threatened and we were very happy!
At 12 months of age, while still in physical therapy we noticed Keelin was not hitting her language milestones. We were referred out to a pediatric geneticist for more test. Crazy tests. 17 vials of blood drawn at one time. Scary possibilities. The tests took two months to get back and good news-all was normal. But why couldn't she speak? We then were sent to a speech therapist.
The speech therapist confirmed that Keelin had a significant expressive speech delay. Her receptive skills-what she understood- at 17 months were that of an 18-21 month old. Her expressive skills-what she could say-were that of a 3-6month old baby. We were told to get her into speech therpay right away. Our insurance only allowed a minimal amount of coverage and we had eaten that up on the inital evaluation. We had to see if we could qualify through the state. The state came in and did an evaluation-Keelin qualified as she was definitely behind, but no speech therapists would be available for three months. Keelin would have to wait.
As we waited, Keelin fell more and more behind and grew more frustrated. We knew she could understand us-she just couldn't tell us what she needed. She had some words, but not nearly enough to make her basic needs known. Finally we got referred out to a program with a speech therapist that would come to the house. Earlier this month, Megan-our fab Speech Language Pathologist- or SLP for short-did another round of testing on Keelin. Her receptive language at 21 months of age was now up to that of a 27-30 month old but her expressive language was still at 3-6 months with some skills in the 6-9 month and 9-15 month ranges. Drastically and severely speech delayed.
But with this bad news, was also an answer. Keelin was diagnosed with Apraxia of Speech. Turns out, she has almost all the hallmarks of this disorder. Apraxia is a neuro-processing disorder. Keelin's brain cannot pull up the "files" or "neural pathways" to make her muscles in her mouth and tongue to produce sound consistently. She doesn't imitate sounds unless she has heard them many, many, many times before. She also uses the same sounds to mean multpile things and often times her sounds come out stilted or slurred.
What causes Apraxia is not understood-and Keelin continues to have other issues that complicate her progress. You can see more about Apraxia Of Speech in children at http://apraxia-kids.org . There is such good information on this site! For now-Keelin receives Speech Therapy 2 times a week and occupational therpay 1 time a week. The insurance company is trying to deny continued occupational therapy and I am working hard to get approval for services. Keelin's therapy will be ongoing for several years.
WE are happy to have an aswer and are slowly starting to get into the new routine of our lives. Therapy is alot of work for her and me. I try to teach Kris and Jared what we learned and they are GREAT helpers. Keelin's long term prognosis seems to be good and hopefully she will be able to attend a regular mainstream school when the time comes.
In the meantime- we keep on working, keep on living and keep on finding the things in life that are beautiful. Oh yeah-and I could sure use a vacation!!!!!
Thanks for reading-
Laura
