You gain some, you lose some

We went up to Dartmouth on Tuesday for x-rays and appointments with the surgeon and pulmonary. Every went fairly well. The boys hardware is still in place. We will have another appointment in 4 to 6 weeks for MRI and CT scans with results of hopefully taking off the collars. Dr Durham (the neurosurgeon) was pleased with both of the boys gains. Hunter was doing some great walking with her. I hope she is right when she said the next time she sees him he will be walking….Alone. She was even pleased with Jack. Even though he is still weak he was putting weight on his feet when he stood. She did say she was concerned about his ankles. She found them to be stiff and if not assisted could cause problems with walking in the future. I almost think he may have been resisting because I can push his feet up and they don’t seem so tight. We will find out when we see Dr Cook (orthopedic) on October 4th. As I expected Hunter gained weight. He is a little brick house. He is now up to 28 lbs. He did not grow though. Jack on the other hand lost some weight. He is back down to 25 lbs. The numbers do concern me but he at least is looking better and so much like skin and bones. We will just keep feeding him the calories and hope for some more weight gain and more muscle build. Jack also did not grow. Pulmonary was just as I expected. She really didn’t do much. Would have been a waste to go up there just for that appointment. Although, she said she heard a heart murmur in both boys. Cardiology has them not being seen for another 2 years. Something to bring up to the Genetics crew when we see them on Monday. I did read that most Morquio patients have some sort of murmur but perhaps we should be seeing cardiology before 2 years.

The fundraiser/silent auction is coming along well. We have just under 50 people RSVPed and over 20 silent auction items. Today I am picking up more pictures of the boys for the thank you cards. It will thank you card day when we get home from running errands. Of course in the mail today I will have more deposits and more thank yous to mail out. We are doing well with all the donations. I thank everyone who is helping us in anyway they can. Everything, even the smallest things, help in big ways. I have also done some more research on enzyme replacement for Morquios. The pharmaceutical company that is doing the trials is suppose to be starting the third phase of trials. What they exactly means I am not sure all I see is that they are getting closer to a commercial option for my boys. The treatment will not cure them but hopefully will stop any further progression of the disease. I will add the web site for the program on the links so anyone who is interested can check it out. I hope you all have a great day today. Looks like the sun is shining and it will be a good one.


About Alison

Mother of twin boys whom both have morquio syndrome
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One Response to You gain some, you lose some

  1. Sally Anderson says:

    I love the new look on the website. Sounds like the Dr’s are keeping on top of things as you are too. They are in good hands.
    You all have many prayers and we will see you at the fundraiser. Love you all.

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