Appointment Updates

It has been pretty quite around here. I say that reflecting doctor appointments. We have been seeing the doctor but no news is good news. Audiology referred us to ear nose throat (ENT) to check too see if the boys have fluid in their ears and may need tube put in. Our appointment with ENT is on the 19th. We have been to get Jack his 6 month x-ray to check his screws. They are still lose but everything is still in place. The hope is that the fusion will grip the screws and the surgeon won’t have to go back in to remove them. We also got orthopedic x-rays but they did not do the lateral spine x-ray ( I don’t know why). They also did not do hip x-rays. So we will be going back in 3 months to get those done in Manchester. I think what Dr Cook (the ortho) is looking for closely to see now is when ( I would like to say if but I doubt it) the boys will be needing hip surgery. I think it won’t happen for another couple years since they just went though some major surgery and want them to fully recover first.

Beside all the doctor appointments we have also been getting them ready for special education pre-school here in town. We have been going for their evaluations (where so far looks like they are all over the board with results) and on the 22nd we will be going for the IEP meeting. It’s a Monday so Matt will also be able to go which is great! He needs to be there so hear what they are planning to do and get his voice in the boys education and therapy.

That’s all for now and I will update you all when I hear more. Thank you for all your thoughts, prayers, and love.


About Alison

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

  1. Janet Page says:

    Hey Guys — so happy to hear things are going as well as they are. It is exciting to think that they may be in an educational setting soon, hopefully this will allow the opportunity to get Taylor into something at the same time.

    Love checking on the updates you post and look forward to seeing you all this weekend!

    God Bless you all, Love Janet xx

  2. Donna Blackey says:

    Dear Mackay Clan,

    We have been keeping up with what is going on with the boys from your website. We are happy the boys are doing well. It is great news you will be getting IEPs for the education of the boys. This will really be good for them! This is a great positive step. You are in hour thoughts and prayers!
    Jon, Donna, Joseph and Abigail

  3. Don Butler says:

    Hey guys,
    It’sso good to hear the boys are doing well. We continue to keep you & them in our prayers & on our church prayer list. Tom keeps us appraised of their progress as well. So keep the faith & we will keep you in our prayers.


  4. Sally Anderson says:

    Hi to the Mackay Clan:
    Thank you for the update. I know God and all the prayers you are getting will help you get through. I guess you just have to take one day at a time. You are a terrific family. Keep the faith and stay strong. We love you and your family are always in our prayers.
    Love Sally and John

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