One year ago, Eddy had his last seizure. He was about two weeks into the ketogenic diet, and I was starting to get hopeful, as he hadn't had a seizure in over a week. When I witnessed his seizure as I was rocking him to sleep that night, I was devastated. I didn't think the ketogenic diet was really going to be the solution. But, miraculously, that was the last seizure he had! Well, it was the last noticeable seizure he had. You may remember that back in the fall, we noticed some jerking movements in his sleep when we were weaning phenobarbital (a little too quickly), and during his EEG, he had one tiny seizure spike. "Technically," that was a seizure. But we weren't going to end Eddy's seizure streak on a technicality, and it wasn't his typical tonic seizure, so the streak continued. And after that week or so, his twitches stopped. We waited a couple of months until his next phenobarb reduction, and there have been no twitches, jerks, or seizures since! And we are so incredibly thankful.
As I said previously, Eddy's development over the past two months has really taken off (taken off for Eddy, which, even though it's faster than usual for him, it's still much slower than typical development.) We were kind of at a standstill for awhile, but then, all of a sudden, he started meeting milestones and doing new things. Physically, he's gotten a lot stronger. He can now push himself up to stand from the floor. This is something we had been working on for a year, but he didn't quite have the strength or coordination to do it. He could push himself up from objects off of the floor, like styrofoam mats that were only a couple of inches tall, but he couldn't quite push up from the floor. Ed started working intensely with him to perfect this skill about a month and a half ago, making Eddy push up from the floor twenty to twenty-five times a day, giving him less and less support each day. And after about a week, Eddy had it down. Also, his physical therapist has been working on Eddy crawling up the stairs and scooting down, and while he really couldn't do it at all a month ago, he now has it down pretty good! (He doesn't enjoy doing it and will make his preferences known, but he'll do it! If you ever come to our house during a PT session, just know Eddy is not being slowly tortured, even though it might sound like he is. :) )
The most exciting thing that's happened over the past month is that Eddy has started really showing us how much he understands! I always knew that Eddy was smart, but to someone who wasn't his mommy, it might appear that Eddy doesn't know very much just because he doesn't communicate. During speech and ABA therapy, he's really been doing an amazing job showing how much he knows! We have all been shocked lately to learn that Eddy knows all of his letters and knows the letter sounds as well! His therapist started holding two letters up (because Eddy has always shown an affinity for letters so she thought she'd have a little fun with it), and he continuously picked the correct letter. So she started adding more letters. When it got up to eight letters to choose from and he kept choosing the correct one, she called me in the room and showed me. I cried. I was so happy that Eddy was showing us that he's "in there." He was so proud of himself. So we added more letters. The most we could fit on his tray was about eighteen letters, and even with that many letters, Eddy was choosing the correct one almost every time! This is so exciting for many reasons. The obvious one is that it shows he is intelligent. He can follow commands, which is an important part of communication. So his receptive language is there. Also, the fact that he can scan that many objects and choose the correct one is impressive for any two and a half year old, especially for one who tends to lack an attention span and be impetuous at times. So, this was an exciting discovery. Since then, we started having Eddy choose "the letter that says "ah" and "the letter that makes the sound "dog." And he continues to impress us with how much he knows! He's been doing great with matching and flash cards and has demonstrated that his receptive language is there. Now we just have to work on him communicating: talking, signing, pointing. Even though he understands a lot, there still seems to be a blockage there with his being able to communicate. If you could pray that he will start to be able to communicate with us, we would really appreciate it. Because I know for a fact that prayers work - the fact that Eddy is one year seizure free is a testament to that!
I can't even tell you how much better life is right now than it was a year and a half ago. When we were in and out of hospitals. When I couldn't breathe every time I put Eddy down for a nap or to sleep at night. When I couldn't eat because I was so nervous that Eddy was going to have a seizure. People asked me how I could handle it, and the truth is, I couldn't really handle it. I just kept putting one foot in front of the other, praying, and asking for prayers, and miraculously, God brought us to the ketogenic diet and answered our prayers. It was so hard watching Eddy have a seizure, watching them put an IV in his little vein, seeing him being wheeled into an ambulance. I don't ever want Eddy to have to go through any of that again. But because of that, we can appreciate what we have now so much more.
Not only is Eddy doing great, but our girls are doing wonderfully! They are meeting milestones like crazy! Today Sylvia said "dada" on demand! I was feeding the girls in their high chairs (today was spinach, avocado, and apples, pureed in my magic bullet!), and I said, as I often do, "say dadada." Sylvia looked at me with a very concentrated look on her face and said "dada." She seemed to have shocked herself because she jumped a little bit but then got a huge smile on her face. It was the cutest thing and, of course, I cried. (I think I may have witnessed a little tear in Ed's eye too. :) ) Since then we've heard "dada" about fifty times and it's the best sound I've ever heard. Eddy has never babbled so this is new for us and we are loving it. Sylvia is so strong and she is basically crawling now. Juliana is funny and sweet and not far behind Sylvia physically. Now if we leave them in the living room to run into the kitchen for a minute, they are both not close to where we left them.
Eddy is starting to show more of an interest in his sisters too. (He's been more attentive to a lot of things lately, like he's seeing them for the first time. He responds to his name a lot more frequently, he looks at me every time I walk into the room; he's just so much more present!) One little funny story from this morning - Eddy has this odd desire to always have his leg propped up when he's drinking his bottle. If he doesn't have anything to prop it up on, he'll use his other leg because he just has to have his leg propped up. Well this morning, Sylvia crawled over to him to steal his bottle, and Ed looked over and Eddy was using Sylvia as a footrest! He was being gentle and she didn't seem to mind. :)
Thank you for reading my blog - I will try to update it more frequently! We are in the process of having meetings regarding transitioning Eddy from Early Intervention services to Preschool 3-5 services. I hope that my next blog entry is a happy one saying that we got the services/program that we are asking for and that everything works out in that regard.
Right now, life is great. We are so incredibly thankful.
