According to the MRI, There is a possiblility they found an abnormality of the brain. I was busy tending to Dawson and Allison went to the Ronald Mcdonald house to shower up so I wont try to go into too much detail until I know my facts are straight. BUT>......
Its in an area of the brain that doesn't involve speech or motor skills which is why we are not seeing any delays in his development in these areas. I think she said its in an area of the brain that controls decision making and judgment but once again please dont quote me on that.
We are blessed to have 3 Neurologist working on his case right now and we are also cursed by having 3 Neurologist working on his case right now. One sees something, the other not so sure, and getting all 3 to come to one conclusion may be difficult.
But we are very excited that Dawson might be a possible candidate for surgery and even more excited that it may possibly be only a small area that would have to be removed.. The thought still scares the bejiggles out of me..
The plan???? Well that's not so simple
They originally wanted to do a PET scan a few weeks ago but then decided against it but now with the new MRI results they want to go ahead and do one. MONDAY!!! which means they want us to stay here inpatient until then. ok we weren't quite ready for that bit of lovely news.
In the meantime they want to gather as much EEG info ( still waiting on the BIG one) and compare the MRI, PET, and EEG together to make sure they are correct in what they are seeing on the MRI.
I really dont know if we can survive here that long...
One of the Neuro's said this morning that while hes awake his EEG looks normal. The only time his EEG is not normal is during a cluster of seizures. We were thrilled about hearing that. So right now we are in a transitional period to say the least. Still lots of work to be done but if at the end of the line we come to a place where surgery is an option then I say it will all be worth it.
In the meantime????
Ketogenic or Modified Atkins is in the VERY near future for us. The reason being that if Dawson is truly a surgical candidate, then it could be as long as 3 months from now before the surgery could be preformed.
Lots of prayers please, this is turning out to be a much longer week than expected. Dawson is extremely restless and Im really starting to feel bad for him.
Our love to all
Jeff
8 comments:
We will be glad to eat brazil nuts and mayo with Dawson over Thanksgiving!
I hate staying in patient. At least you brought your air mattress!! Praying that they get all the info they need to figure out what's going on with these nasty seizures!
Well .. tons of info.Nothing concrete but heading in the right direction.You can do this.You can survive.You know you can.I say,better to do it on full swoop rather then return.Nothing fun .. I sure can relate to that.Prayers flowing here.
This all sounds hopeful and pointing in a *good* direction. 3 Nueuro's? Wow...I always feel the more set of eyes the better...they all might have a piece to the puzzle...the Dawson puzzle!
I know that hospital stays seriously stink, the longer, the more jail-like...but you guys will get through it...you have tons of prayer and good thoughts coming your way.
All sounds like good information and heading towards the answers you need! Praying for Dawson and hoping this week goes quickly for you! The weekend will be the toughest as everything seems to slow down then. However, all this testing will be well worth it! We'll be thinking of you guys and sending love from Texas!!!
WOW! WOW! WOW!
That is all I've got right now except to say that we have had a very similar day!!! I will e-mail you tomorrow about it (I haven't put any of it on the blog yet). got to hit the bed right now...soo tired! This is great potential news though. Surely they won't keep him on VEEG til Monday so hopefully he will get to wander soon. I now how prison like the hospital starts to feel after a day or 2. James & I both are medical professionals & we LOATHE being in the hospital...always have, even when Connor was born. Hang in there, & tell the neuros to play nicely. {{{hugs}}}
Its tough getting news like that but it is also good to know that there is a cause for all of this. You will need to ensure that all your pre-surgical testing is done before starting keto. You won't be able to do repeat PET scans easily if you are doing the diet.
I hope the results bring the three neuros together. At our hospital surgery is decided by conference and everyone has to agree on the approach - neuro, neurosurgeons etc.
Wow, what a miracle that his EEG is normal between seizures! That is awesome news! I'm hoping they are able to pinpoint a specific area!
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