Regained Milestones and Memorial Weekend Fun

Marek has been working hard this last week. We have been adjusting to my mom being gone and trying to figure out sleeping arrangements. As of now Ryan stays up until midnight with Marek and then I take over until the morning. He hasn't been sleeping any better but our fingers are crossed that this will change when we get off steroids. We dropped his dose of Prednisolone on Sunday to the lowest dose it has ever been. We are also suppose to be weaning off Topamax as well, but I haven't worked up the courage to start taking him off of it yet. Something in my gut has told me to wait a little longer before starting the wean. I am just scared that weaning off two medications at the same time would be too much for him. I am sure the doctor will be thrilled to hear that I have held off on this.



Marek went 6 days without a seizure, but unfortunately had a 27 minute cluster Tuesday afternoon. Since last time he went 12 days without a seizure we are a little nervous that they might becoming more frequent. His neurologist will be upping his dose of Sabril on Monday so we are hoping that he doesn't have any more before then.

Since Marek had his 24hr EEG last week we had to cancel OT and PT. His OT is out of town this week so he only had PT this week. His therapist is just amazing. Marek needs a stander and since our insurance continues to deny therapy the state is now covering services. The downfall of this is that everything moves at a snails pace when trying to get equipment. So we will be waiting for the state to approve our request for a stander and send it out to us. We have heard that it could take months!!! However, since we have such an out standing PT she has been able to find a demo stander that Marek was able to get on Wednesday!!! We just have to wait for him to get fitted for it before we start using it.




We have been working on getting Marek to roll from back to tummy for the past few weeks. Tuesday night while doing dishes Ryan came in the kitchen and told me he left Marek on his back and he turned over to his stomach. I didn't believe him, and since Marek didn't do it again all night I dismissed it. Mom and I FaceTime every morning and while on the phone with her Wednesday Marek finally rolled over back to tummy and has been doing it non stop over the past 48 hours! Now we have to start working on his sitting because he has forgotten how to do this. Therapy yesterday helped and his PT gave us a bunch of exercises we can do to help regain this skill.



Marek went to his first Cardinals game Wednesday night (Thanks Mom and Dad). He was the best baby ever and  caught a foul ball on the first pitch of the game. He stayed awake for the whole game, which Ryan and I were super excited for since we figured he would sleep for a long period of time once we put him down for the night.....WRONG! He slept for 45 minutes.

I called the hospital on Friday to see if Marek's ERG (Retina) results were back yet and the nurse informed me that his test has not been finalized by an ophthamologist yet but the preliminary results are normal. We will have the final results some time next week. Ryan and I are still waiting for our Chromosome test to come back.