Jack’s surgery

As some of you have heard and some may have not, Jack has to go back into surgery for his fusion. Unfortunately, Jack’s fusion did not fuse. This is not an uncommon problem for “normal” bones and even more common with those with Morquio. How did this happen? Well, in non-doctor terms, Jack’s red blood cells did not flow to his transplanted rib bone. Therefore, the bone died off. Where did it go? It pretty much disintegrated and the remaining calcium (pretty much what bone is) was reabsorbed by the rest of bones in his body. Now Jack is scheduled for January 26 first thing in the morning for his re-fusion. They are going to remove his current hardware, replace it with the same devise but longer rods, harvest more rib bone, used wires, screws, and bone paste to put it all together. They are also going to add a protein called Bone morphogenetic protein or BMP. This protein is used to encourage bone growth. What are the side effects? Well, the ones we are most concerned with is swelling and producing too much bone. With the swelling it can add extra fluid in the area. If this surgery was from the front of the neck, which it’s not, the swelling could also be life threatening as it can compromise breathing. The extra bone growth can be a concern because too much bone growth could create another compression in the spinal cord. Of course this will all be watched closely. After all is said and done Jack will be in a medical halo for….6 months. We are praying that this fusion goes extra smooth and the halo can come off earlier but we look at it this way, if the halo stays on for 6 months then it will be off for the start of summer. We should only have to be the hospital for a day or two after. In light of this horrible news there is a silver lining. Hunter still has a small fusion and MAY NOT need another fusion. Other then all the medical stuff the boys are doing very well. Both are moving excellent in their walker and getting stronger what seems like everyday. We hope that this surgery doesn’t set Jack back too far but he is now better then he was 6 months ago so we hope that he won’t loose too much if nothing at all.

We also wanted to introduce you all to the new look of the site. We have made a welcome page which is the home page to introduce you to the site. The blog has it’s own page and we have added up coming events too. We are trying to make it a bit more formal for when we officially become a tax-exempt non-profit. We should hear from the IRS about tax stuff next month then hopefully can announce that we can start collecting donations and they will be officially tax-exempt. The board of directors will be meeting soon on some fundraisers coming up this year. Now with the non-profit we are donating money to the boys, the MPS society for research for Morqiuo syndrome, and the Carol Ann Foundation for Morquio Research. Both organizations you can find links to on this web site. We are starting to donate to these organization because while your donations to the boys and the medical care from our wonderful doctors can get us far it can’t stop the progression of this disease and prolong their lives like an enzyme replacement therapy can. Please remember as we have made this change if you still wish for your donations to go directly to the boys please mark this so we can make sure it is sent to the correct location.

We thank you all for your continued support and prays. We look forward to the day we can stop Morquio in it’s tracks.


About Alison

Mother of twin boys whom both have morquio syndrome
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