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Yesterday was quite the day… it started out with waking up very early because Mary Elizabeth had her MRI, then Andy had a rough day at the job and was tired from helping me out in the morning, due to getting up early and being in the city all morning-I was tired myself… then things were hectic when I got home and I wanted to get some work done I missed from earlier in the day… but then… at 6pm the power went out and it stayed out til 6:15am this morning. NO FUN. Andy and I were not pleased as this was the 3rd time in a week this happened and it hasn’t happened that many times in the 4 years we lived at the house… *sigh*

And of course yesterday was Andy’s birthday, and we didn’t do much celebrating of course. But HAPPY BIRTHDAY ANDY!!! A wonderful man at 29 yrs old deserves the best so we’ll be taking him out later in the week

OK here’s the update from MARY ELIZABETH’S MRI YESTERDAY:

all went well- she was good and it went pretty smoothly. As soon as we neared the city (after the GW Bridge) was saying “NO DOCTOR, NO HOSPITAL” so it’s pretty much apparent she’s very aware of what is going on that she knows well before we even get there. I hate to have her associate NYC with the whole dr/hospital thing. We’ll eventually have to take her down for a play or something instead. She did fine with the anesthesia and all that though.

Anyway, instead of going back down to the city for a consultation, they had a phone conference with Andy this morning……

They said they saw a great deal of improvement with the spots they injected. So she’ll have some more injections/sclerotherapy to the bigger cyst pockets “macro-cystic”. Remember she does have a lot of smaller cysts which appear big because they are clumped together so to speak. They are “micro-cystic” Those cysts will have to be surgically removed when she’s done with sclerotherapy. They will also do some injections to the floor of the mouth” which is pushing her tongue up to help the size of that and give her room. As for her airway and the most commonly asked question “when will her trach come out”… they are looking to do a little more lasering in her airway and remove her tonsils to free up her airway and that will get her ready for trach removal (decannulation). Once all that is taken care of she will have to have the jaw surgery. All this will take time, but once it’s done she’ll be more settled and the LM will be controlled enough where she won’t be getting repetitive surgeries like this. Perhaps it may take another year, two or three. Not too sure and with this condition it is hard to say because there can be flare ups, or bumps in the road so to speak where complications arise to delay the next steps.
We are of course praying against that and asking God to work in her life for the best possible scenario. So please continue to pray for her and we’ll keep you posted.