I have good news and bad news where Owen is concerned. Let's start with the bad and get it over with. About a week and a half ago, Owen had his absolute WORST seizure we had ever seen. Up to that point, Owen's seizures consisted of a combination of head dropping, limb flailing, minor eye rolling/staring, and/or slight momentary shaking. This one was different. It lasted longer...probably around 15 seconds as opposed 2-5 seconds. It was the longest 15 seconds of our lives; it seemed like 2 hours. His entire body was convulsing. His eyes rolled back but for much longer than usual. He fell asleep after it was over, and luckily, we haven't seen another one like it since. However, the worry and constant fear--not to mention the mental image of our sweet little boy struggling--is still present in our minds. Seizures are sickening and evil!
The good news is overall Owen is doing awesome. He had a checkup in December with his epileptologist. He slightly increased one of Owen's seizure meds (which could have caused the bad seizure he had), along with discussed inserting a feeding tube. I know what some of you are thinking, "A FEEDING TUBE?! I THOUGHT HE WAS DOING WELL?!" Owen's doctor brought up a feeding tube a year and a half ago and we were terrified to even look into it. We thought it meant giving up on him. We thought that would be his only mode of nutrition, through a tube. However, after speaking with other parents and researching, we now know that Owen could still eat the same way he has been. The feeding tube will be used primarily for supplemental purposes, helping him gain a little more weight and decrease the risk of aspirating. Soooo, I think we are going for it and will see how he does. He has a consult with a GI specialist at the end of the month and then we will schedule surgery after that.
As far as developmentally, Owen is doing great! I received an awesome note from his teacher yesterday. He stood against a wall for 5 plus minutes and played with toys. He is still sitting independently (he will even sit through a seizure sometimes!). He's grabbing, transferring toys, laughing appropriately, shaking his head yes and no (most of the time). We feel like his little personality is finally showing its face! He likes to tease. He likes grandpa and papa's singing (might be the only one:)). He laughs when his brother Dex gets into trouble. It's a pretty awesome thing to see him change and grow.
Owen and Blake are best buds. It melts my heart. They sit up face-to-face and play together. Sometimes Blake will cry until Owen is sitting in front of him. They steal toys from each other. They stare at each other, and they have the most endearing looks on their faces. There is just too much cuteness going on with these two, I can hardly take it.
Side note: Blake is 6 months old and a nearly perfect baby (I might be a little biased on this one). I didn't realize babies existed like this! He sleeps about 10 hours at night (with an occasional nighttime feeding about once or twice a week), he is an avid blankey sucker like his big brother Dex, and all you have to do is say hi to him to get him to smile. He talks, he laughs...he is just a little ball of sunshine. Now if he could only grow some hair....
So good to see an update :) Glad he is doing so well other than that seizure.
ReplyDeleteKeep us posted on the feeding tube.
So sweet to see those two brothers enjoying each other so much! :)