Summer Days

Our days are sure busy this summer. I cannot really even describe where the days have gone since Hannah returned. They’ve been lost to a flurry of activity around Hannah’s school situation next year, dentist appointments, medical appointments (many of those again for Josh), adjusting to hearing aids, carpooling to gymnastics, teaching Hannah how to drive again (on the right side of the road–we had a little scare yesterday!), and planning our summer vacation to North Carolina. This trip will also encompass a school visit for Hannah to UNC as she is now very much in the heat of making her post-secondary decision.

We may have had a break through with understanding Josh’s hearing loss last week. The office of our fabulous genetics doctor called us up to let us know that the connexin tests were negative. This was a bit of a relief because often positive connexin tests would indicate a progressive loss. The doctor’s office wanted us to come back in though, on referral from our audiologist again. This concerned us. We were told the next appointment was at the end of August! Thankfully (perhaps serendipitously) an appointment canceled for the next day and we were able to get in right away. Chris went with me to see the genetics doctor this time. The doctor told us she thought Josh had a “syndrome”–more on this once we get the blood test back. I won’t go into specifics yet. But we wait anxiously. This diagnosis is not without implications, some good/some not so good–depending on how you look at it. But, on a whole, I think this diagnosis would somehow be a relief as it really addressed some of the other concerns I’ve had about Josh but really haven’t been able to draw together a link between the various issues I’ve been noticing (many have to do with that “almost” cleft palate, eating issues, and now teeth issues). Also, if this diagnosis holds true–the hearing loss won’t be progressive. In fact, with this whole syndrome, what you see now, is what you get.

Well, now I am off to my PT appointment with my still-frozen shoulders. More soon.

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2 comments
  1. It is always nice to get an “answer,” and it is good that this syndrome is a non-progressive type!

    I hope your shoulders recover- what happened? Ouch!

    It must be a relief to have Hannah home, though accidentally driving on the left side of the road must have caused much panic- we did the same thing when we moved home from Ireland! Oops!

  2. The uncertainty is a big cause of parental anxiety. I hope the blood tests reveal more and give you peace of mind knowing what to expect in the future.

    I also should have mentioned John Tracy Clinic in my email to you. I can’t stress enough how great their correspondence courses were for our family. They have a parent/baby program that will guide you through some of these early questions/decisions. (www.jtc.org).

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