I always link into the "Kelly's Korner blog" when it is for special needs moms. I know how hard it was when Cohen was first diagnosed to find any other families going through what we were going through. If anybody wants to visit the exact post that I use to link, click Hearing Impaired and Apraxia.
That post is from 2 years ago and unless you want to read through all the other craziness and exciting posts, I will add a little update. Cohen has started her 4th year at Magnolia Speech School and she has far surpassed anything we thought possible. She has an endless vocabulary (no exaggeration here). Her speech is still unclear at times but can be given a few cues and she can correct it some. Now there are some times when she tells me something and I have absolutely no ideas what she is saying. It is usually when she is telling me about something that happened when I wasn't around and don't know the context to figure it out. But that is happening less frequently. She is up to 24 sounds in her sound book. She has these sounds mastered on their own. However some of those sounds she has difficulty saying in different parts of words--initial, middle, or end. This is where you really see the apraxia-- she can isolate the sound but can't say it in a word. She continues to get speech therapy 3 times a week, audiology 2 times a week, OT 2 times a week, and Auditory-Verbal therapy once a week. I know it sound like a lot but luckily it is all done at Magnolia!
Her main struggle at the moment is socialization. She is a very social child but struggles with typical conversational dialogue. This has not been an issue before but as her peers get older, they are recognizing the difference. When Cohen is in a situation where she is unsure what to say or how to answer, she will just state a random sentence, for example-- Cohen on the soccer field runs up to the coach during the game, she doesn't know what to tell him so she says, "I saw a black dog yesterday." She doesn't expect a response and usually has moved on to something else. She has shown some improvements this school year and I believe it has to do with having 2 other girls in her class this year. She is used to having all boys so I think this has helped.
Her hearing still fluctuates from mild-mod loss and she is pretty good with letting us know if she is having difficulty hearing. I really don't think that she misses much-if any! She is now responsible for taking them out, opening battery doors, and putting them back in when she wakes up. I never thought we would get to this point! I also never thought I could trust a 4 year old with devices that are worth thousands, but she can do it!!
As far as the hypothyroidism, it has been controlled very well by Dr. Moll. We have upped her dosage in very small increments over time to keep her in "her" range. It took time and some frustrating discussions with the drs for everyone to get on the same page as to where Cohen functioned best. TSH, T3/4 levels are not as black and white as other lab values. What might be considered "normal" levels might not be where Cohen feels best. This took ALOT of time, bloodwork, and observations to convince the drs that I could tell where she felt best. But like I said, we have controlled it well recently and hope for that to continue.
It has taken us so long to get to a this point and honestly, I never thought we would get here. I am now struggling with decisions that I never put a lot of thought into because we never thought we would get to make them! We are starting discussions and looking into schools for AFTER Magnolia. If you would have told us she would mainstream at anytime before junior high, I would have laughed at you. But knowing she could attend First grade at Northshore or a private school near us, excites us. It does. But it scares the you know what out of me too!!
Wednesday, September 11, 2013
For those who read for updates on myself, I will make it quick! I have my 4 month follow-up PET/CT Scan tomorrow morning. I don't have any reason to think that it might show that I have any change for the worse-- no enlarged lymph nodes, night sweats, or unexplained fevers-- but I am kind of nervous that things are going on. Any extra prayers would be appreciated-- prayers for good reports and for my apprehensions! I follow-up with Dr. Elkins Monday afternoon and will be sure to update. For those who read the blog to see my sweet, precious kids, please continue :)
School is back in full swing and somewhere between dance, soccer, gymnastics, karate, cub scouts, and fall baseball, we DO actually go to school :) Kinson is doing great in school, loving reading and spelling, but requiring a little bit of reminders that his behaviors might be a little too wild for school! Cohen is transitioning a few of her regular lessons to a different version and if you know Cohen, then you know that she doesn't change well. It has been rough lately but I am sure like every other thing, she eventually adapts.
Kinson is rolling through the karate belts! He competed this weekend a received his low purple belt. As wild as he can be, it amazes us how focused he can get during karate positions. The instructors use his outgoing personality as an asset and he leads his group.
My sweet little Tiger! We have had this uniform for 3 years and it is just now fitting her right. She is the cutest little thing when she puts this on. She only knows to say, "Geaux Tigers!!" and will say it over and over. When I picked her up from school, she was showing the little boy beside her, her "cheerleading panties" and informing him that she wears 2 pair of panties with her cheerleading outfit!! I am trying not to worry about that yet!!
Have you seen a more beautiful group of girls!?! These are my nieces, cousins, and sweet sister-in-law and this was a few weeks ago after eating at Babalu. My cousins live in Virginia and we only get to see each other once a year (which is nowhere near enough!) so when they come we pack a ton of fun into a few days. I know they read my blog---- WE MISS Y'ALL!!!