Hear Ye, Hear Ye

A medical update for the Sophster. Mostly for my own journaling purposes because no matter how hard I try I never write in my notebooks so I'm going to try out the blog again. 

A little Sophie recap since it has been a while: Hearing

Soph was born with a severe loss in her right ear and no loss in her left ear (July 2013).

She started using a hearing aid for her right ear around eight months old (Spring 2014). It didn't seem to make a huge difference, which wasn't surprising since the loss was so severe that audiologist warned us that it might not help. 

Sophie had an ABR (sleep deprived hearing tests) every four months of her first year with no changes.

Then in September of 2014 we had Sophie do another ABR while she was sedated for her MRI her neurologist ordered. The result of that test was difficult for us. Sophie had lost hearing in her good ear which left her severe in the right and moderate in her left. A pretty big jump. The CMV diagnosis always put Sophie at high risk for hearing degeneration but we had our hopes up that the anti viral would prevent it. (also the MRI revealed nothing, it was just a yearly check up).

Sophie's audiologist set her up with a hearing aid for her left ear and for three months we tried out using both aids full time. It took a while to figure out that the hearing aid in her right ear was causing a lot of distortion and making it more difficult for her to focus on speech. With the help of our speech therapist we decided to drop the hearing aid on the right and just focus on her good ear.

In August of this year, Soph was old enough to start doing her hearing tests awake in a booth. After her first awake test, she didn't have enough of a response for anything to be certain so they ordered another sleep deprived test. She was too old to do sleep deprived but I really didn't want to sedate her again so we tried it out. here we found out that Sophie has regained some hearing in her left ear!! Words really can't explain getting that kind of news. It's life changing for Soph. Even IF she loses more later this time with better hearing will give her a better foundation for learning to talk.

Since then we have just kept working. Sophie's therapy line up currently:
Speech Pathologists 4x a week
Teacher of the Deaf 2x a week
Occupational Therapist 2x a week
Physical Therapy 2x a week
Special Needs 1x a week

For a grand total of 51/2 hours of therapy a week. I know it sounds like a lot to some (and not much to others) but we have found a good rhythm with our team and our family. Honestly, I don't know how people raise kids without a whole team. They are a huge support to us and it's amazing to have the kids so engaged in activities and learning so much. We include Linc in all the sessions, he doesn't even know they are for Sophie. 

Sophie Update: Neuro

Sophie had brain condition called PMG (small folds of the brain) that was caused by the CMV virus. The PMG is what causes her developmental delays.

She has a few cysts on her brain, a few in locations that need to be monitored which is why she has MRIs done on a yearly basis. So far, nothing has changed and the MRIs look good.

Sophie had an EEG two weeks ago. Her neurologist was concerned she may be having small seizures at night. The concern came from a bunch of small instances adding up. Sophie has poor oral control which makes her drool a lot and slow down her speech, she has had a little tremor in her right arm occasionally, as well as a few "freeze up" moments twice this summer where she didn't respond to me for about 10 seconds. It could all be nothing but we did an EEG just to make sure no seizures were happening. We are still waiting on those results. 

Sophie Update: Development

Sophie is my miracle. So far she has kicked down every door our original "diagnosis" put in our way. She walked at 18 months instead of five years old. She eats like every other kid, she sleeps amazingly well, she is sassy and stubborn and full of crazy. Just like I hoped she would be.

Her only real delays at this point are speech and oral. Sophie signs a ton, understands what we are telling her, and takes instructions unless she is being atypical disobedient two year old. Her oral delays make drinking from a straw, talking, sticking out her tongue really difficult. But we continue to see progress and I'm very hopeful she will talk to us one day. As her speech therapist explained it, Sophie is trying to do a puzzle where she can't see the larger picture and all her pieces are white. That is what her hearing loss and oral motor skills do to her. It is amazing all she has accomplished. She has a resilient, determined spirit and for that I am grateful. 

She also has a little delay in her left hand. We are working on building strength in that arm and a little more finesse in her fingers but she has made a lot of progress there as well. 

All in all, I'm just grateful. I've grown a lot these past two years, most of that growth hasn't been easy or pretty but I just try to take it one day at a time. Learning to be grateful for the small improvements and not worrying about twenty or even five years down the line. We have seen so many miracles and I become more assured every day that Sophie is living the life that Heavenly Father wants her to. 

1 comment :

Breann Johnson said...

I'm so glad you are posting again- I've seriously missed hearing about you guys. I'm so glad that your sweet baby girl is growing and doing well and sincerely hope that things get even better and easier for all. I miss your sense of humor and friendship all the time! Totally random, but with Donald Trump in the running for President I've had dreams about you being a history teacher and giving all sorts of crazy fun lectures about America at this point in time. Just so you know- we think( and I dream i guess) about you guys a lot!


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