A visit with the Genetic and my other new Family

I thought maybe I would start my post out today for you with a new picture. The boys are doing what they like to do best. Watching TV and having a little grub.  Jack is the one closest to us. I actually had to take a double take on that to make sure I was telling you the right name. That bench that they are sitting on Matt’s grandfather found when Taylor was little.

What a cutie. She still is a cutie but not as innocent as she was then. 😉

Thanks Gramp, I know you are looking down now and proud of all your great-grandkids. And I am sure you surprised that this bench is getting so much use out of it.

So on Monday we went and had a nice chat with Dr Moeschler, the boy’s genetic. We really didn’t talk about any new information but was nice to be able to sit down and talk with him. The last time we had seen him it was in the hospital and only for about 15 minutes. This appointment lasted about 1 1/2 hours. He showed us the boys growth chart using the chart from the Morquio Registry. The boys are currently in the 10th percentile. He said that was good news. But when we got home and was explaining our appointment we thought about it and seemed to us that means that they are shorter then the average Morquio patient. Not that their height matters to us we just didn’t understand why he said that it was good news. I will have to give the genetic counselor a buzz and ask again. We also discussed that they had their spinal fusion early compared to the average age. Average age being about 8. Again not being that the boys have a severe form, just that they had a severe aspect of the syndrome early. The boys of course were rowdy and Hunter seemed that he had to turn his octave level up a little bit more during the appointment. Thank God for Sheila, the genetic counselor. She tried so hard to play with them and get them quite and not hang all over Mommy and Daddy while we talked.

I have also found many new friends in my new “Family”. Laurie from the MPS Society has been making emails to other families around the country about the boys newly diagnosis of Morquio Syndrome Type A. Families have been contacting me and adults with Morquio have been in contact too. Words can not express how I feel about my new family members. I have never really met them face to face but I feel a special bond with all of them like I have known them for years. I am sure that when I meet some of them I will no doubt be in tears and hugging them. If you are reading this my new Family I cherish everyone of you and thank you  for reaching out to me and my family. I thank you for the support and advice you will be giving me in the future. Thank you for being there for me.

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About Alison

Mother of twin boys whom both have morquio syndrome
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3 Responses to A visit with the Genetic and my other new Family

  1. Rachel says:

    Hey Alison,
    Glad their appointment with genetics went well. I love our coordinator also she is always taking Bella off my hands so I can talk to the Dr. I didn’t realize that there was a official growth chart for morquio. LAst I knew it hadn’t been approved and couldn’t be used for patients. I may have to give Dr. Nowak a call and see where Bella falls on that. Anyway. I am very happy to be part of your new family. I feel the same way about all our morquio family members and when we finally meet in person it will be wonderful and I am sure we will both be crying!
    Rachel

  2. Karen Swanson says:

    Allison,

    This is Ken’s wife. I advise the Leo Club and may have some volunteers to help as needed. Do you need publicity put up around town for the Fundraiser and Silent Auction. Some Leos could do that.

    • Alison says:

      Thanks Karen. Normally I would make more publicity for the fundraiser but right now we are actually getting close to maxing the room out. Thank you so much for letting the Leo Club know and we may need volunteers if anyone is available.

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