Bitter Sweet

One of my best friends gave me the title for this post. Being that it is bitter sweet that the boys will remain in their collars for another 3 months. Makes me think that when the doctor asked me if the boys minded their collars and I said no, they really don’t care about them I should have said yes, they hate them, they are always try to rip them off. So, the good news, not there is really any bad news, is that the fusions are fusing well. But because of this affects MPS IV has on the bones, making them soft and brittle, we would hate to take the collars off too soon and disrupt the fusion. Yes, I do not want to have to refuse the bones and go though the whole ordeal again. So three more months it is. Jack has to back in 6 weeks though. He has a screw loose. I’m surprised, I would have though Hunter would have a screw loose with the way he acts. HA HA. Nothing to worry too much about on Jack though. They will keep an eye on the screw with x-ray and CT scans and in about a year they will just go back in and remove it. The screw is still attached, it’s not like it floating around in there. It’s just a little wiggly.

The other appointment we had this past week was Audiology. Both boys did well on their hearing test but the ear drums we not as responsive as they would have liked. As a follow up we will going to ear, nose, and throat to see if they need tubes placed in their ears. It does make sense if they do need tubes. Maybe that is why they are slightly behind in their pronunciation of words. Only one way to fine out. The audiologist believes there may be fluid in their inner ear making everything sound muffled and may be stopping any low frequency getting in. Tubes being put into their ears is no worry on my mind. Very common procedure for small ones.

With all that said our next appointment is with our orthopedic next Monday. We have not seen him since a quick visit in the hospital before the boys had surgery. It will interested to see what he has to say. I would also like to ask him if he has every worked with or seen someone with MPS IV since we was the initial one to get all this going. Thank you for all the prayers and thoughts you send our way. We very much appreciate them and appreciated you all for keeping us there.

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About Alison

Mother of twin boys whom both have morquio syndrome
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3 Responses to Bitter Sweet

  1. Janet Page says:

    Hey Guys! Thinking of you all and praying things are continuing to get better. Hoping to get over there soon and visit. Love to all of you and may the Lord continue to watch over all of you. Love Janet

  2. moe & claudette says:

    we will continue praying and hoping for you. We’re Tom’s friend and live in colorado. We visit in June and will make it a point to visit.

  3. Bobbie Johnson says:

    Tom,We really appreciate the updates on the boys…I can only imagine what you are dealing with and want you to know that you are ALL in our thoughts and prayers. It amazes me how resilient children are. Believe me, we have first hand knowledge after what we have been through with our own Grand Daughter, Parker. I have seen, with my own eyes, the power of prayer. We pray for the knowledge that God will give all of the Physicians to heal these wonderful boys. Keep us posted on their progress, please. We love ya’ll…JD&Bobbie

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