Aquarium and Check ups

We went on a little adventure on Monday to the Aquarium in Boston. The kids ha a wonderful time. When we first got there we went right to the penguins. I was a little nervous because the half wall between the viewers and penguins was too high for the stroller. If we picked them up they may not want to get back in their stroller. But smart aquarium designers they had windows built into the walls so the little ones and those in strollers did not have to be picked up to see the animals. Both boys sat right up in their strollers. Hunter was all excited but I wasn’t sure if he was pointing to the penguins or if he was pointing to the water because he wanted to take a little dip. Though he was mad when we left the penguins. The tantrum started and did not stop till we found another fish tank to look at. He finally got the idea that we are suppose to be going from tank to tank. And a little cheese balls helped ease the nerve. Even though they seemed to enjoy themselves I think we may leave them at home next time. I couldn’t leave their side to go and be with Taylor (my 3.5 year old). If I did it was screaming and crying till I was back and calming them down. Thanks to some friends we have a year membership and can go back as many times as we want and don’t have to pay the admission. To anyone who likes to go the the aquarium if you can get a membership. In two trips the membership will pay for itself with us. At $22 for an adult (I think its 13 and older) it can get expensive!

Yesterday, Tuesday, we took the boys up to Dartmouth Hitchcock for a check up. They had x-rays which went well. Hunter had a harder time sitting still but that seems to be the trend with him. Jack was a bit more cooperative. The x-ray techs had a duck puppet and when you made the puppet talk it quacked to Old MacDonald had a farm. Jack so wanted to take it home. So they whipped out their secret stash of stuffed animals and the boys got to take them home. I come to realize that DHMC is very child friendly and tries to have stuffed animals or toys when needed and walls painted for distraction. We then hit up a small cafe in the hospital to eat. When we were finished he headed up stairs for our two doctors visits. When we were waiting to see Dr Durham, the neurosurgeon, there was a young boy there who was waiting for his brother to finish up appointments. This little boys seemed to love playing with the boys especially Jack. I have not seen Jack laugh that hard in a long time. He was awesome to see him laughing that hard and with someone he didn’t even know. Usually Jack would whine and not want to be around the stranger but there was just come connection with the two of them it was crazy. We then went to see Dr Durham and we got some great news even before the Doc came in. Jack gained about 2 pounds and was weighing as much as Hunter. And, even though length is very subjective, the boys grew about 2 inches. Great news since we really don’t know how tall they are going to get. With their diagnosed syndrome comes short stature. Typically people with this syndrome start to slow about 18 months (which they did do) and stop growing around 8 years of age. I am still hoping and praying that they will at least reach 5 feet. They do not have all the symptoms and I hope they will grow more then the typical. Back to our appointments. Dr. Durham was pleased with their x-rays and the visual look of their incisions. In another month we will go back and do it all over again and late September we will go back (most likely one at a time) and have a CT scan and MRI and if everything is good the collars will come off! We then met with their neurologist. She too was please with the progress and will be scheduling another appointment in 3 to 6 months. At this point when I think off all the visits we will be going up to Dartmouth every month to every other month. Thank God we have all lots of help with getting kids to appointments and people at home to stay and watch our others so we can make all these appointments without any other stress. After our appointments we went up so the Pedi unit to make a little visit. The nurses were very excited to see them and see how wonderful they looked. Although, I love all of them up there on the Pedi floor I hope to just visit and leave and not stay for another 2 weeks.

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About Alison

Mother of twin boys whom both have morquio syndrome
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One Response to Aquarium and Check ups

  1. Sally Anderson says:

    This site is fantastic for keeping everyone updated. Sounds like you had a good time at the aqarium. The kids can keep you going, that is for sure. We are so happy with the results of the tests. We are praying for them to keep improving and having those collars off in a couple months. I’m sure they will love it when that day comes. It was really nice to see you all on Sat. You have a beautiful family and you are in our thoughts and prayers every day. God Bless you.

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