Not oh so good news

So all month we counted down the days when we were to meet with the boys neurosurgeon and get the words we had been waiting to hear, “okay we can take the collars off”. Well that day came and the words never did. Instead we heard “well, the fusions have been reabsorbed and we will have to go back in and refuse.” I was alone with the boys and boy was this a time I wish Matt was there. I though it was going to be a basic quick appointment. There was a lot of pauses and some questions. Jack’s fusion is gone. The transplant bone did not get the red blood cells it needed to grow so turned into complete calcium and consumed by the other bones. Hunter is the same but has a small fusion still remaining. With Jack they are looking to fuse down a few more vertebrates to C5 and he will be in a halo. Hunter looks like they want to just add some more bone and get him something more stable then the collar but not as severe as the halo. Hunter not being as bad as Jack is going to wait a few months till his re-fusion. Jack has a ct on January 24th and not sure when the re-fusion is. They were thinking end of January beginning of February. So needless to say 2011 is not starting on the upside of our medical chaos. Kinda funny to think that we only recieved this diagnosis 6 months ago. It seems like years. I hope in the new year to keep up on giving up dates for you all that try to stay in touch with how the boys are doing. Sometimes, like now, I am at a loss of words when explaining to you what is going on. It sometimes is hard to explain the life changing 20 minute appointments we get like we did on the 23rd. We were hoping to start this new year with working on more orthopedic issues like hips and have the feeling of moving on to a new area but unfortunately we have to again take care of this one. Thank you for staying in touch and please keep checking in, in new year for some hopefully better news.

Wow, sorry for the rambling and kinda quick answer to our latest appointment. I hope to have more information for you in a couple of weeks.

 

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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.

6 Responses to Not oh so good news

  1. moe & claudette says:

    all we can add we will pray harder!!!!

  2. Don Butler says:

    Sorry to hear the boys are not progressing as well as expected. But, just keep praying & God will bless. All things happen for a reason. We don’t necessarily know what, when or why they do. We still have them on our & our church’s prayer list.

    Take Care & God Bless,

    Don Butler

  3. Bobbie Johnson says:

    JD and I continue to lift all of you up in prayer. I can only imagine what you are going through. Friends and much prayer will continue to give you the strength that you need to endure the days and months ahead. Please keep posting when you have new updates.

  4. Oh Alison I am so so sorry to hear this! Unfortunately I have heard of this happening in a few other cases as well. Morquio strikes again :*( The one good thing is that the boys are so young they will never remember this chapter in their medical history. Unfortunately mom and dad will never forget. Big hugs!

  5. Sally and John says:

    Dear Matt and Ali and Family,
    There are no words to tell you how sorry we are. We are praying for you and also praying to God to give all the medical staff guidance in helping those precious little guys. Thank you for the update. Stay as strong as you have been. We love you.
    John and Sally

  6. Mama & Dad MacKay says:

    Alison,
    I never even gave it a thought how it must have been for you to receive that depressing and shocking news about Jack and Hunter. I am so sorry. You needed such a hugh hug and a good cry and I never gave you that chance. I wish I could give you the biggest hug ever, right now.
    To be by yourself, driving that distance, after receiving that news…. I can’t imagine what that was like. I am sorry.
    I know Matt would have gone with you if either one of you thought it was going to be “bad” news.
    Dad and I love you and we are praying. ❤ xoxo

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