April 3rd Update

I grabbed the camera and enjoyed Vic's little face, tube-free, when his tube popped out by mistake. This happened the very next day after my last update. I’m still not sure how it happened, as I was holding him at the time. My friend, Amanda, was visiting and while she and I were talking; there dangled his tube. I flew into a slight panic State, realizing that I’d have to take Vic to the ER because the tube was placed by X-ray back in January.

After discussion with Gary and our doc’s office, we agreed that I would take him to our pediatrician’s office and learn to place it myself! It wasn’t as bad as I thought it would be. Victor actually slept almost through the entire process. I’m so glad that he’s so even-keeled about things!

Other than the tube, not much has changed since the last update. Victor has been tolerating his current ratio but still has 20 or so seizures/day. On occasion he’s had fewer but not quite the number we’re aiming for (zero).

Victor is still teething and drooling everywhere. He’s just about to cut the top two on either side of his middle teeth. All this teething keeps him up at night and us too! Victor still wakes in the middle of the wee hours and stays awake for about 2 hours at a time. Yes, we’re pooped and working in shifts to remain somewhat sane.
(photo to right: Vic passed out and Sammy watching over him)

FUN THINGS: This past Sunday was Victor’s first time at the public pool. It was a bit overwhelming for both he and I (it’s weird seeing other people’s reactions to Victor). There were kids and families everywhere, splashing about, making it difficult for me to allow Victor a calm place to enjoy the water. We stayed in the water for only 20 minutes or so. He really liked it when I jumped up and down with him in my arms. This boy loves fast movements! The other thing we do with him that he really loves is swinging him around in a blanket. Gary and I take ends and toss him about…it’s so great to hear him giggle! Speaking of giggling, this past Saturday while sitting at the dinner table, out of nowhere, Victor gave us a toothy grin and giggled. It was very brief but very memorable!

Boy, I really miss hearing him giggling on his own! We’re still hoping the diet will allow us to wean him off some of these meds. They really suppress his true character, which makes it difficult to stay focused but we continue to try as we see him enjoy physical therapy and vocalizing in his Little Room. (photo to right: Sammy & Zebee curled up on Vic's baby bag)

UPCOMING TESTS: Next Monday & Tuesday, we will be at Children’s hospital for a 48-hour video EEG. We are not looking forward to it. Wednesday, we’ll also be at the hospital for Victor’s 3rd MRI and a muscle biopsy. These are tests to see if anything has changed and to determine if there is a focal point to his seizures. The biopsy is one last test to try and determine the root cause of his seizure disorder. It will be a long week!

The following week, Gary will be out of town for several days, which means that I’ll be holding fort alone. We thankfully have a night nurse scheduled during those nights but those days might be a little long.

A BIG THANKS to those who have prepared us meals and offered to help us in various ways. I can’t express enough how comforted we are by your actions!

Next Update: April 23rd