Appointment updates!

We have been very busy with appointments lately and I wanted to wait until we made it to a break to fill you in on some of the updates. Some of the uneventful appointments we have had was pulmonary and neurology. Both boys look good and we will do a pulmonary appointment in 6 months and neurology in 1 year.

We also visited the ENT and audiology. Both boys still have mild hearing loss but this was the first time they actually wore the head phones. So we are going to return in June to do a repeat test now that we have somewhat of a base line with them actually using the testing equipment. Hunter is also going to have a sedated ABR test when he has is next CT to test him with out any behaviors since some times he like to play games when testing.

We also went to Children’s Hospital Boston for orthopedics. We had to temporarily leave CHaD for ortho because both surgeons have left. As of right now we are going to hold off on hip reconstruction. Dr Karlin (our new ortho) believes that while the boys should have their hips done before they turn 6 he also feels that they need some time to really recover from their spinal fusions. In the mean time Hunter is going AFOs for his feet and ankles. We knew it was coming because his ankles are very stiff and he has a hard tome walking. This may help him with walking and running plus maybe some better balance. He his getting a dinosaur pattern and his sure that his new dino shoes are going to make him super fast and beat everyone in a race.

While we were in Boston we were also able to meet up with the Burtons whos youngest also has morquio. We went to the zoo and then had ice cream after. It was great to finally meet them in person and fun to see Taylor and Bella become BFFs. I look forward to seeing them again and hopefully getting together with them and another morquio family for a BBQ this summer.

 

IN the next few months we have some more appointments. We are going to doing Hunter’s one year post op CT scan, cardiology, audiology, and more ortho. We also will be going to the MPS conference in June. We also have a date for this years bike rally. I will be held on July 21st and there will be more info to come. I am also looking to plan a fundraising event at Friendly’s in Concord on May 15th for MPS awareness day. This is not set in stone yet and will let you all know more when it does.

 

Thank you all for your love and support for us!

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About Alison

Mother of twin boys whom both have morquio syndrome
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