MRI down and a few pics

Hello again, Friends. Not too much to say today. (Not that I couldn't babble on, as anyone who knows me can attest.) I just wanted to let you know that we had Lucas' MRI this past Friday (nearly a week ago now). My dad came to help with Eliana so that both Marc and I could be with him in recovery. Everything went smoothly as far as the procedure goes. He did have 100+ seizures that day though. We had to wake him to get to the hospital and then had to wake him again in recovery to prove to the staff that he was all right. Any time his sleep is disturbed the seizure count goes up. Also, after about three months of trying to get him pooping regularly and finally having success, we are back to Miralax and have only had two poop days since Friday. He's not had the best week at school either. He's been somewhat grumpy, uninterested and very sleepy. We're not sure why this is, but we'll keep pressing on and expect next week to be better. :)

 As for the results of the MRI, the neuroradiologists at StL Children's hospital are saying pretty much the exact same things they said after his last MRI when he was three months old. They are saying that he has holoprosencephaly (HPE). The last time we went through this, those of you who have been following this mess for the past five years might remember, we sent a copy of his MRI to The Carter's Center- a group based at Stanford in California that works only with HPE cases. They told us that Lucas does NOT in fact have HPE. They gave us a list of different malformations they could see, but said that it is not HPE. The language they are using in this report is the same as that which they used on the last one stating that it is within the "spectrum" of HPE suggesting they are not firm on the diagnosis. The new Neurologist, Dr. R (who has yet to convince me that she's the doc for us), said that she will speak with those in radiology to see how confident they are in what they wrote. Regardless of what they say, we are going to see if those at the Carter Center will take another look and offer their opinions. We have a great deal of confidence in what they say, not only because they are experts in the field, but also because they are experts in the field of neurology in general, the guys who write the books. :) None of this changes our course of treatment for Lucas, so overall, I guess it doesn't really matter. We are continuing to increase the Keppra. Over all, it seems we are having a decrease as most days are about 20-30 seizures. We are looking forward to getting and keeping them down further. :)

I feel like I had something else to say, but Eliana just threw her yogurt soaked bibs on the floor, so I should get and clean up the mess. We have a few pictures to share and hope you enjoy them. Oh! I remember what I was going to say! We are buying a house! Last summer the kids and I went swimming with a friend at the house of a man who attends the same church as we do. I only went into the basement to change a diaper, but told Les, the owner, that we have been looking for a ranch like his with a pool and if he ever wanted to sell to let us know. Six months later, the house was up for sale. We close on it on August first! There are a lot of changes and updates that we want to make, some for Lucas, like changing carpet to hardwood and some our cosmetic preferences like getting rid of all the wallpaper. :) We won't be moving in to the house for a few months after we buy, but we will be using the (heated) pool into the early fall! We are growing in excitement with each passing day and will surely show some pics as we progress. :) I think that's it for now. Blessings to you all. Thanks again for sticking with us. God is good even in the struggle and exhaustion and pain. He Is Good. :) Love to you all!

Spring in St. Louis