Appointment Updates

I want to welcome and thank all the new followers for Jack and Hunter. I know Mom MacKay has been doing a lot of talking down in good ole North Carolina Thomas Jefferson Middle School about the boys. For those who don’t know The 8th grade classes at the school where Janet works are required to ready the book Freak the Mighty, a book about a friendship between two outcast kids. One whom has Morquio Syndrome. I was very surprised when I found out that this book was required reading. I myself have not read it and don’t think I plan on it because I know how it ends.  The classes have also decided to do some fund-raising for the boys. Thank you all.

Now into the appointments. We did go see the ear nose and throat doctor because of the boys mild to moderate hearing loss and negative pressure in their ears. In turn they we all decided to have them get ear tubes. Will they work, we will have to see in March when we go up for a hearing test. They had them put in this week along with a CT scan of their fusion. We meet up with Dr. Durham, their neurosurgeon, on the 23rd and hope to receive the news that we can take off the collars.

We are also buckling down for preschool this fall for them. We have the boys IEP meeting this Friday coming. I would think this would be the last school meeting till they start the day after their 3rd Birthday. At preschool they will not only receive the education aspect but will also receive PT, OT, and speech therapy. This will be good for the boys and for Mommy. What would I do if I had no kids to take care of for a couple of hours?

So the line up for doctor appointment for the start of the new year looks like this. In January we have swallow studies. In February we are going to see the pulmonary doctor and get x-rays and see Dr. Cook, the orthopedic. This appoint may lead to more frequent appointments but lets home not. Then in March we have follow ups for their tubes and a hearing test. Let again hope for the best of this appointment to because if the tubes don’t work we would be moving on to hearing aids.

That’s it so far. Thanks for checking in and keeping us in your thoughts and prayers.

 

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About Alison

Mother of twin boys whom both have morquio syndrome
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3 Responses to Appointment Updates

  1. Kari Hampsom says:

    Hey Matt and Alison, you may not remember me but I was and still is close friends withh Steve and Amy. I had my first child Lindsey 6 years before our baby Hannah. At 9 years old Lin was diagnosed with type 1 juvenile diabetes. We were blindsided. We only thought that old, fat people were diagnosed with this…not the case. After the diagnosis we learned about the disease and had to deal with it every day, every hour and every breath she takes. Last June she exercised, pitched a high school game and at bed time about four am she went into a seizure. Her dad and I freaked, I got her glucagon to stop her seizing and then 911 came. It is so important to be prepared, there is nothing in this world that will let you know when your kids need you. xoxoxox

  2. kaylynn says:

    i remember preschool being soo much fun! i remember alought from my preschool years. once i started preschool the things my mom did wile i was at shool was: sleep, work at the charch,sleep,take care of carly, and well……. sleep! but ya once they get used to being away, they will have alought of fun! theres new friends and bunches of toys to play with! HAVE FUN!!

  3. Janet MacKay says:

    Thank You Alison for the updates on Jack and Hunter.

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