A Step in the Right Direction

Our Neurologist called us on Thursday and told us that they had a cancellation for Friday morning for an EEG. I immediately took it since every day seems like an eternity to wait. So our EEG got moved up from March 12th to yesterday morning. Marek was a champ at getting all the leads on his head and during the EEG. During an EEG they want you to be able to put your child to sleep for 20-30 minutes. I was nervous for this part since our little guy really doesn't sleep when we want him to, but he fell asleep 10 minutes after we started the EEG. For the past few weeks when Marek is asleep he twitches a lot and his eyes will flutter open and shut. I have always wondered if this was seizure activity or just normal baby sleep. He had a few of these twitches and eye flutters while hooked up to the leads so I was sort of relieved that these were caught on the EEG. The whole test lasted about an hour and then we were on our way. The EEG tech told us we would have our results by the end of the day Monday.

Late afternoon yesterday I received a call from our Neurologist. He told me that he was able to watch part of the EEG and had some preliminary results for us. He told us that unfortunately Marek does not have a normal EEG (this I already knew since he is still having spasms), however he did tell us that the EEG showed improvement from Marek's previous EEG. We are taking steps in the right direction! He told us that Marek has moments of normal brain waves but his background is still chaotic. He told us that this shows Marek has had some response to the steroids. We still have a very long road ahead of us but I am staying hopeful that we are on the right path to get Marek better. We are holding at the same dose of ACTH until Monday. On Monday we will be talking with our neurologist more on what our plan looks like now that his EEG looks better. We are still taking things one day at a time because we know that the rug can be pulled out from under us at any moment. We know we have to come off the ACTH because the risk for Marek to have more serious side effects are growing higher each day he is on it. We also know that there is a high risk that the spasms can get worse as we wean him off the ACTH. Although we have lots to worry about in the next few weeks I am trying to "celebrate" our step in the right direction.

One thing I am celebrating is Marek has reached another inchstone. He has been able to hold himself up with straight arm with the assistance of his boppy pillow. This is amazing since Marek is very apprehensive of putting his hands down. He is still clenching his fists while pushing up but with a little help he will let me open his hands and keep them that way for a short time. Our occupational therapist is calling me Tuesday to set up his first therapy appointment. I am hoping we can work on keeping his hands open.


Speaking of celebrating,drum roll please......................Marek has finally hit a half MILESTONE (Yes in our home we have half milestones that we celebrate!) Marek is able to roll over from his tummy to his back. He did it for the first time yesterday and I was scared that maybe it was just on accident but he did it later last night and this morning. We caught his 4th roll on video!! I am so proud of my Mighty Man. His strength and determination amazes me. I love him so much!

Go Mighty Man Marek