Busy Day At DHMC

On Thursday we brought the boys to Dartmouth for several check ups. First it was Dr Durham, the boys neurosurgeon. It was Jack’s two week post op appointment. He is looking good and like we all know he is doing well at home. We will have another pin check (halo pins) in two weeks and at the 3 month point ( end of April, start of May) he will have a CT scan. If this scan comes back good, no lose screws, bone growing (remember they added the bone protein to help stimulate bone growth) they will remove the halo and put him in a collar. But of course we have to remember that the original plan was to having in the halo for 6 months. Now for Hunter, this appointment was about 6 – 8 weeks after his last appointment. She is very pleased with Hunter as we all are at home. Hunter will have a CT Scan in one month. If the imagine shows stable or increased bone growth then he will come out of the collar. But if he has any decrease it will mean surgery and halo for him too. Which this time around doesn’t worry me as much because know I know what to expect. Of course surgery is stressful enough plus if he is in the OR as long as Jack was (7-8 hours) it’s crazy nervous.

They then proceed to pulmonary. This of course is a breeze. Yup here they are, look in their ears, look in their mouth, listen to them. Yup they are good see you in 6-12 months.

Then was x-rays and orthopedics. Both boys did well in the x-ray room. Only a tad bit of whining. Then we met with Dr Cook to go over the x-rays. He focused more on Hunter most likely because Jack just had a surgery and it’s not like we are going to throw him into another one right away. We decided that when Hunter has his CT scan they are also going to plan a MRI for his hips to get a better of picture of exactly what is going on in there. Then we will decide what to about hip surgery for him. Unfortunately,  it’s not about if it’s about when hip surgery will be done for the boys.

No appointmentss dates have been set yet, if I don’t hear from the Hospital by Wednesday I’ll give them a buzz. I know that those scheduling girls are on the ball, plus it can be some work to get CT, MRI, and pain free all scheduled together. Some good news for Jack is that he is now walking comfortably in the walker. Still likes to walk with Mommy (and beats up her arms with that hat of his). We are still waiting on their own walkers. Medicaid approved them and now it has to go though private insurance then they can order them. We will have to say goodbye to our loaner as they will no longer be having Early Intervention because they turn 3 on the 20th. They will start school on March 7th where they will have preschool education plus all the therapies they need. It will a nice break for Mommy and will be good to get the boys into a different environment a few hours week.

That’s all for now. Thanks for checking in on us and for all the prayers you send.

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About Alison

Mother of twin boys whom both have morquio syndrome
This entry was posted in Jack and Hunter. Bookmark the permalink.

4 Responses to Busy Day At DHMC

  1. Deb Charland says:

    Thank you so much for the update. My thoughts and prayers are with you all. Sending you all hugs & kisses. ❤ ❤

  2. Don Butler says:

    Thank our Great God for the knowledge he gives our doctors & the technology the great minds have come up with to allow these two great little guys to have a chance to regain the use of their bodies. Our continued prayers are with you daily.

  3. Sally and John Anderson says:

    Good news and we pray it continues. You are certainly in our thoughts and prayers always. Love you………Aunt Sally and Uncle John

  4. Mom and Dad MacKay says:

    You sound so up-beat, Alison. That is all great news.
    Love and miss all of you sooo much! xoxoxoxoxo

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