Just wanted to update on what's been happening the past couple weeks!
So... Baby Owen had his evaluation for Early Intervention last week and started Physical & Occupational Therapy this week. However, he only qualified for the services because of his condition - not because of anything he was or wasn't doing! Which is GREAT NEWS! He scored high on mostly everything except clenching his fists and favoring his right side -- most babies do both of these things! So Owen and I are working on getting that tiny little head to "look left!" and have been massaging his arms & hands to help release his fists. Both are going wonderfully! He really is looking left more and is not clenching his fists as much! However, he does not like the exercises! Haha. Go figure.
The only thing they are concerned with is the way he eats which, to be honest, Owen and I have asked about repeatedly from the start. He always seemed so noisy/anxious/agitated during most of his feedings. He also seems to take some of his seizures during burps. Well, now we are going to have a swallow study done at Children's to see what's going on. There's a number of things it could be, and hopefully it's only a matter of thickening his formula with cereal so he slows down! He definitely is a gobbler :)
A main concern is severe acid reflux, which obviously is not like your average baby's acid reflux. Some of his tantrums may not be seizures, but could be reflux spasms. Luckily this week, we got about 6 of his episodes on film (finally!!). We start Zantac tonight to see if anything changes at all.
Next Monday he has a 23-hour EEG @ Children's. Though we hate to see him take them, we are REALLY hoping he will take a few episodes for them to catch on the machine so we can try and get more answers. That really is one of the hardest parts -- no answers. There's so many things that could be going on. Infantile spasms is what they are initially thinking, but that is just the beginning. If it doesn't appear that that is what's going on, it still could be what's going on. Does that make sense? Nope. Not to me either. But apparently infantile spasms like to disguise themselves initially on the EEG. Sad face.
O3 had a few bad days this week. Yesterday his took 14 seizures in 20 minutes. That was rough. But, we came out of it smiling, as always. Always such a happy boy.
A lady told me last week about an article on "skin to skin" contact reducing seizures, so we decided to try a lot of that this week. I must say, it REALLY helped! So we thank her for her input. :)
Other than a few bad days, overall Baby O is doing great. We continue to thank everyone near and far for their love and support -- please know that we could not be as strong as we have come to be without you! Everyday we get closer to the day where we will hopefully have more answers. And for now, we just love our sweet little warrior baby.
Here's some of his pictures taken today for Valentine's Day. Enjoy! :)
