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So we had Mary Elizabeth’s follow up visit yesterday at the hospital. Sclerotherapy this time around did seem to work in some areas. It’s been 7 weeks and we found last time it took a few months to see the full result so we really aren’t sure how much it really worked until some time has passed. Also, to get a better picture- they will do an MRI and we are trying to schedule that as we speak. Probably will end up being a month from now.
    Not all of it may be seen with the naked eye. There are a lot of cysts in there we don’t really "see". So the MRI will really help get a good picture and tell the Dr’s what they need to recommend as a next step. Sclerotherapy is good only for the large cysts, and Mary Elizabeth does have a lot of areas that are very small cysts clumped up to appear as a large mass – so those will not be injected.

She is having some lazy-ness on the right side of her mouth resulting in her mouth not fully closing on that side. You will see her use her hands to close it more while eating and whatnot. This may be from swelling and nerves falling asleep from the work that has been done. We are praying that this is temporary. We have seen something similar in the past as her smile was crooked last time she had a procedure done but then healed and her smile was back to normal.              

Aside from the MRI, she is going for a procedure next week- Thursday, May 8th. She is going under anesthesia and Dr. Waner will do some tongue & gum lasering and her specialist/dentist will follow to check and do any work on her teeth that may be needed.

Lately Mary Elizabeth has been asking to go swimming and anything more than a shallow kiddie pool or sprinkler – she will not be in- so no real swimming will take place. The risks are far too great for a child with a tracheostomy. We tried to explain this to her in the best way possible and of course she asked for us to take her trach out. She wants to be free of it, as do we. Thankfully she’s so very loved and adored so she is a happy little girl and remains strong but still, please keep her in your prayers, she sure could use a miracle.

As for other news- she’s doing fabulous as she’s potty trained. She’s gotten better with her listening skills- though she still is at that age!! And she’s been enjoying all the events and visiting we’ve been doing. So lots of happy times!
-You’ll see what I mean as I will be putting up pictures very soon 🙂 … here’s one cute one for now…