Wednesday, May 6, 2015

Happy Wishbone Day / OI Want to Know Part II

HAPPY WISHBONE DAY!!!!!!!!!!!!!! 

Are you wearing your yellow?! (Have you sent a picture to us yet?!!) Are you having to wear sunglasses to stalk your friends on social media because your timeline/newsfeed/whatever is so bright and beautifully yellow??


I also hope you receive a million compliments today for how wonderful you look in your yellow...and then I hope you tell that kind soul all about WHY you are wearing yellow. #spreadingawareness

In honor of OI awareness week, instead of the usual post, I'm doing a Q&A series called OI Want to Know...answering questions that YOU've asked.  I don't have OI, but I care for Isaiah, who does.

How many therapies does Isaiah receive?

Through our state's Early Intervention program, Isaiah receives Physical Therapy and Speech Therapy weekly.  He has Occupational Therapy once a month.  I think the first two are pretty self explanatory, but in OT, we focus on eating and fine motor skills.

Is Isaiah still in Water Therapy?

Yep! We just started back up last week!  We had taken a short break to give his incisions time to close up.

Thanks to our insurance, Isaiah receives water therapy once a week.  Once we have the hot tub up and running for the season (Dave is adding in some pavers and such), we'll practice some things we learn in water therapy at home at least three times a week. (It's much easier in there than our bath tub. ;-)

Why does Isaiah need speech therapy?  From the videos you post, his speech seems awesome.

Isaiah started seeing a speech therapist right before his shunt surgery.  He sees her for a few reasons.  One is that we feel like he should be talking more.  Isaiah is a fantastic mimicker...but he rarely speaks on his own.  Even mama  and dadda...he says them if we ask "Can you say mama?" or "Who is that, dadda?" (while pointing), but he rarely says them on his own.  He is getting better about initiating speaking so that does make us feel a bit better, but he has some work to do...

He also has an issue with that tongue.  When he says certain sounds (m and b are big ones off the top of my head), he says them with his tongue hanging out.  The sooner we can nix that, the better, but it'll take some time.  I've noticed that it's pretty common for little ones with severe OI to...for lack of better wording...have their tongues hanging out here and there?  I believe it's honestly related to the OI, because although OI is most characterized by fragile bones, you have to remember that it is a collagen disorder; collagen is in EVERY part of the body, including the muscles (and the tongue is a muscle!)

Do you think you will home school him to keep him safe?

I change my mind on that fairly often....good thing I have a few years to figure this out! ;-) I don't know that I'd chose that to "keep him safe", per say, because he can fracture from sneezing, you know?  I'd choose homeschooling if I thought that would be best for his learning but I know his social skills will need to be sharpened and I'm not sure those skills would be best sharpened by my homeschooling him (although I know the homeschooling network is amazing and there are lots of social opportunities).  Honestly, I don't know yet what we will do, but we're leaning toward putting him in public school.  It helps that I have a background in the school system.  Isaiah will definitely have an IEP and an aide.  In my dreams, I will get a job in Isaiah's school, and when he fractures, his aide and I can switch places while I get him medicated and splinted and we can go about our day. ;-)

Do you have help to care for Isaiah?  Do you and Dave get to go out just the two of you?
I have lots of loving people who offer to help care for Isaiah!  But I am kind of a control freak with him.  I honestly get overwhelmed just thinking of everything I'd have to teach whomever would be caring for him that it's just less stressful for us right now to go about things on our own.

Now that I am thinking about it, Dave and I haven't been out just the two of us since Isaiah's NICU days...but we have a tendency to give ourselves little date nights on the couch watching a movie after Isaiah goes to bed or in the hospital cafeteria when Isaiah is in surgery...haha jk on that last one, but that's not a bad idea!

There are days I wish we could just have someone babysit, and I'd be lying if I didn't say that I don't get down about it sometimes (like when I missed that epic #PingPartyof2 wedding), but then I remind myself that he's worth it.  He's so worth it.  And I am lucky.  Not many people can be with their child 24/7, watching them grow and seeing so many milestones firsthand.  We are hugely connected, and I know it's because of how much time we spend together.  And some day, when he's older, we'll be calling Grandmom or Aunt Tricia to watch him while we run to catch a movie.  We're just not there...yet!


OI Want to Know, Part III will be posted on Friday. If you have something you've been wanting to ask me, please do.  If you have a question, feel free to leave a comment on this post, email me, or send a message to Isaiah's Facebook Page.

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