DAY 16

Hi everyone, it has been an whirlwind few days, this post is actually going to be an email that I sent out earlier, so if you got my email about Avery's surgery, you can disregard this, otherwise, feel free to read on!  We love you all!

Hi everyone I tried to send these thru smilebox, because it seems to go a little quicker, but this is all that I could do, so hopefully this will help answer some questions and give you a better idea of what Avery is going to have done.

In case you hadn't heard anything yet, we went to have Avery's MRI done the other day because they didn't find what they thought may be happening with the ICP monitoring last november, so they wanted to look at an MRI to try and rule out a few things, and just make sure the brain was growing well from the Cario-facial surgery....and they ended up finding what is called Chiari malformation, where Spinal fluid isn't able to flow down to the spine in the way that it should be. It is sometimes just fine and they just have to continue to watch it, but other times, it can cause a whole host of things, cordination problems, delays, problems with swallowing/chewing, speech, snoring (all things Avery has), once they go in a fix the 'tonsil' everything begins to kinda flow normally again! The Dr said that it is one of the neatest things, because once they carterize the 'tonsil' and fluid begins flowing again the the brain starts pumping and it's like breathing oxygen into the spot, where it hadn't seen much oxygen for some time!

is the pic of his scan, the red circle is the actual Chiari malformation, its supposed to be 3-4 cm, but it is 12 cm, so they are going to make an incision from top to bottom in between the area that has the red lines,

then they will carterize the 'tonsil' to make it the size that it should be,

The surgery is scheduled for Tues April 6th, he will be in surgery for over 2 1/2 hours, ( I say that only to say that it may take longer, just in case you dont get the word @ 2 1/2 hrs!) That night he will be in ICU, then moved to a regular room for 2 days. After that I really don't know about the recovery times, or much else, we were in pretty much utter shock, we were expecting that we would do the scan, and the Dr's would again tell us that nothing showed up and we would do another set of tests, so needless to say we weren't thinking thru everything that we have now come to realize that we need to ask, so all that to say that as soon as we do the pre-op and are able to ask some questions, I will shoot another email to let you know anything else.

Please feel free to email me to ask questions, I have no problem with that! I will do the best that I can with what I know. Also if you kknow of anyone else who would like to know what is going on, again, feel free to forward this to them if they aren't on the list of addresses above. Thanks so much, we love you all, and would greatly appreciate all your prayers!

Brad, Danielle, Abigial and Avery