Eddy is in School!

It's been over four months since I've last posted, and we've had a lot of changes since June! The biggest change is that our little boy is now going to school! We had our service plan meeting to transition Eddy from Early Intervention to 3-5 Year services in June, and we were very happy that all of our requests were granted. Eddy is currently going to a Special Education Pre-K Boces program on Tuesdays and Thursdays from 8:30 am to 11, and he is still getting lots of services at home, pretty much the rest of the time. (He has therapy basically from 8 am to 11:30 am on Mondays, Wednesdays, and Fridays, and he also has therapy when he wakes up from his nap three days each week!) We were initially told that Eddy could only attend the pre-k program if he went full-time, but we knew (and his therapists agreed) that Eddy was not ready for a full-time program. We will most likely send him full-time next year, but this year, we knew that he would be much happier if we started school on a part-time basis and allowed Eddy to continue to see his therapists at home. He had been making great progress with them, and we wanted this momentum continued.

At first, Eddy was not a big fan of school. I think his teacher was expecting a much different kid, because I shared with her in advance that Eddy had never been away from home before, that he doesn't like change, and that he most likely wouldn't like school. I think she expected him to cry and throw tantrums the entire time he was in school, but he did the opposite - he fell asleep at 9 am for the first few weeks! When Eddy is overwhelmed, he completely shuts down. He didn't fall asleep because he was tired; he fell asleep because he was shutting down all of the stimuli in his new environment. During the third week of school when I picked him up, he smiled because he was happy to see me. His teacher said, "Wow, that's the first time we've seen him smile!" I was like, "What?? Eddy smiles all the time!" That's when it really hit me how much he must've disliked school.

On the Thursday of the third week of school, his wonderful ABA therapist, Rae, came into his classroom to work with him and show his teacher and on-one-one aide what she is working on with him and what he is capable of. Ms. Moore, his teacher, said that as soon as Miss Rae walked in, Eddy sat up a little straighter and got a big smile on his face. After the session, Ms. Moore said that they couldn't believe how smart Eddy was and how he had been hiding it for the past three weeks! Eddy likes to fool people to think that he doesn't know a whole lot, when the truth is that he is very smart. (Something we have been learning more and more this year.) So when Eddy went from tuning everyone out and really not participating in anything, to showing everyone that he knows his letters, most of his numbers, his colors, object identification, and how to sort objects into categories, they were shocked!

This was about a month ago, and it was a turning point for Eddy in school. After he was aware that his teacher and aide knew what he was capable of, he realized that he couldn't fool them anymore. He has started to do all of his work and every week, I get reports of him being more and more happy and smiley. Today he had a great day in school, smiled a lot, participated in the craft activity and centers, and was very vocal. Lately, especially the past few weeks, Eddy has been really trying to talk more and more. For awhile there, at the end of the summer, we were getting a little discouraged by Eddy's lack of progress with sound-making and talking. It seems to always go in waves with him because he is back to trying to make sounds. Last week, when I was getting him out of his car seat to go into school, I said, "Eddy, do you want to go to school today?" and he said, clear as day, "Okay!" It was shocking because he's never made the "k" sound before. He makes a lot of vowel sounds and occasionally makes the "b" sound and the "m" sound, but "k" was a new one. Later that day, we were "saying" the alphabet together (I say a letter and he tries to repeat it), we got to "k" and he said "kay" again! Twice in one day! I haven't heard it since then but it's exciting because I know he is able to make the sound. We have started a few biomedical treatments recently that are supposed to help with speech (Methyl B12 and folinic acid), and we're hoping that they will, in fact, help him to start talking. It's still a huge prayer of ours and we would appreciate it if you could continue to prayer that Eddy will talk!

Eddy has been doing so great in therapy for the past two weeks. He is now counting objects up to seven pretty consistently (nonverbally, of course; given five objects, for example, he'll choose the number "5"), he knows his numbers to ten, he knows many colors and shapes, he is doing great with some animal sounds, his object recognition, matching, and sorting is great, and he's getting better at imitating. One very exciting thing that has happened recently is that Eddy is finally using his pointer finger on a regular basis! When he would do matching or object recognition in the past, he would touch his answer with his entire hand. Then, for awhile, he wanted to point, but he thought he needed help to do it, so he would grab his therapist's hand and as long as he was holding her hand, he could get his pointer finger out. Well, in the past two weeks, Eddy has finally started pointing with his pointer finger independently. That doesn't sound like a big deal to most people, but for Eddy, it's huge!

Eddy is the happiest kid I know lately. He went through a phase recently where he would whine throughout most of his therapies (he would still do the work, but he would whine.); but in the past two weeks, there has been very little whining, lots of smiles, and lots of correct answers. He is such a great kid to be around because he's always happy! He loves cuddles, he laughs a lot, and he's much more social than he was a year ago. He always comes up to me to pick him up and give him a hug, and he loves giving kisses. Ed and I say at least a few times every day, "Eddy is such a nice kid!"

Another change since my last blog update is that we got a new nanny, Marie. She is great! The kids all love her, especially Sylvia, which is good because lately Sylvia has been very particular lately about who she lets hold her. The girls will be a YEAR OLD in two weeks and I can't believe they're already almost a year! The past six months have absolutely flown by. They are such a blessing, so smart and so funny. Sylvia started walking at ten months, and Juliana just started walking at eleven months. They both have lots of words; some of their favorites are "dog," "ball." "mama." "dada," and "hat." It's a lot different this time around to see normal development and we're always so shocked with what they already know. They really love Eddy, and he definitely loves them too. He's very careful around them, and even though he's still pretty clumsy when he walks, he makes sure to carefully walk around them so he doesn't hurt them. They love to hang around Eddy and steal his sippy cup when he's drinking his milk, and he's so sweet about it. He puts up with so much from them. (I think he secretly likes it though because sometimes I'll look over and he'll have a little smile on his face when his sisters are hovering around him.)

Eddy is 16 months seizure free and doing so well. The ketogenic diet is still working miracles, and if any of you know anyone who has a seizure disorder, please ASK THEM if they've tried the ketogenic diet. I'm shocked by the number of people who have seizures or have children with seizures that have never heard of the diet. It's time-consuming but you get used to it and it becomes a part of life. It doesn't work for everyone, but it sure has been a miracle for our Eddy.

We are in the process of weaning Eddy off of Keppra now (tonight we lowered his evening dose so he's taking one tablet at night and one in the morning; he was on two in the morning and two in the evening.) He's now completely off of phenobarbital, and our next goal is to get rid of the small dose of clonazepam he takes at night. Then he'll just be on the ketogenic diet and a small maintenance dose of keppra. I am so glad we're getting these pharmaceuticals out of his body. I forgot to mention that Eddy has been healthy for so long now, despite him starting school! I hope this continues throughout the winter. We supplement his diet with lots of vitamins, minerals, probiotics, digestive enzymes, fish oil, and several other supplements, and they have definitely helped to keep him healthy.

We are so so so incredibly blessed. Thank you for being invested enough in Eddy and in us to read this update, and always always thanks to everyone who continues to pray for Eddy. He really is doing great. Maybe in one of these future updates, I will be able to say he's talking? I know that with enough prayers, anything is possible!