Another surgery is in Oliver's future.  He is going to have his tonsils and adenoids removed next month.  His adenoids are HUMUNGOUS.  In fact, our ENT couldn't get his scope past them to see into Oliver's throat.  Kids with MPS can sometimes have fatty pockets in their throat, which makes intubating them very dangerous.  He was hoping to get a good look today, so we can put together a plan.  Unfortunately that was unable to happen, so he is going to scope Oliver's throat the day of the surgery.  They will give Oliver a mild sedative to keep him calm during the procedure.  If we get the all clear, the surgery will go on as planned.  If not, we will move onto Plan B (not sure what that is yet).

I am just so thankful for an ENT who is familiar with all of the additional complicated issues surrounding MPS.  We feel like we are in such capable hands.


mykidsmomx4 said…
It is so great when you have a doctor in whose abilities you are confident.

Praying Oliver will come through with flying colors!
Misty said…
Will did very well having his tonsils and adenoids removed. We have been very pleased. Sorry about the Doctor leaving, it is wonderful to find such a great, caring Doctor. Congratulations on the respite worker. We haven't done that yet. The help will be invaluable. Thinking of you all always, Misty
Anonymous said…
My sister goes to Taylor and I just happened to read the article about your family. I'm sure you have already heard about the stem cell transplant program at Duke University, but thought I would forward the information onto you, in case you have not. They have performed transplants for children with MPS. On the rare chance that it might be a treatment option for your children, I am forwarding the link for further information as well as an article about another family who did seek treatment at Duke for their daughter.
Shannon said…
Thanks for the information regarding Duke. We went there last spring for a week of testing to learn more about the transplant and to see if our kids were eligible. Waverly was too far along in the disease to be a candidate. They did offer the transplant to Oliver. But after a VERY LONG month of researching the transplant, talking with many families, reading through medical papers, and reading the blogs/journals of other families...we decided that the transplant just did not offer enough benefit to be worth the risk.

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