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!

One year seizure free!

Today is an amazing day. Today we celebrate one whole year since Eddy has had a visible seizure! We celebrate six days of Eddy being completely weaned from phenobarbital. We celebrate that the past two months have been huge in terms of development for Eddy. We celebrate that Sylvia said "dada" for the first time this morning! We celebrate beautiful weather and a beautiful weekend ahead. It's a great day!

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.

It's been awhile.

I have been meaning to update this blog for the past couple of months, but I never get an hour with two free hands to type on my computer...so I finally broke down and downloaded the blogger iPhone app and am typing this with one hand on my phone. This could take awhile.

Life has changed dramatically since my last update. We welcomed our beautiful girls, Sylvia and Juliana into the world on November 11, when I was 38 weeks and 4 days pregnant. My OB said that I hold the record for the longest anyone in his office has gone with twins! Praise God, everything went smoothly during the pregnancy and the c-section. I was planning on having them naturally, but Juliana decided to flip to breech when I was 37 weeks pregnant (how she had room to do that, I have no idea.) So, we were scheduled for 7 am Monday morning on November 11, and the babies were born at 7:27 and 7:28 am. (I do have to say that it was nice not going through a 12 hour labor again, but the recovery was much more difficult.)

It was really, really hard for me to be away from Eddy while I was in the hospital. I missed him so much, and even though he still doesn't talk, my parents (who stayed with him) said it was clear he missed me too. The day after the babies were born, our nanny brought Eddy to visit me in the hospital. This was such an emotional meeting for me and it was so hard to see how big my "baby" was compared to his 4 lb 15 oz and 5 lb 12 oz sisters. Eddy had been my baby for two and a quarter years, and I wasn't ready to accept that he is no longer my baby but is rather the oldest of my three children! When Eddy came to the hospital, my good friend and photographer, Megan from Park Avenue Photography (she's amazing, hire her!) happened to be snapping some newborn shots, and she captured this picture, which I absolutely love. This was the first time Eddy had seen me in over two days, and the first time he could really hug me in awhile (without my twin bump getting in the way. :) )

After five days in the hospital (Juliana was jaundiced right before we were scheduled to be discharged on day 3 and she had to be under the lights for 24 hours), we came home to our new norm of utter chaos and craziness. Luckily, my parents moved in and helped us for the first month. I honestly don't know what we would've done without them, and I don't know how anyone does it on their own. Even with four adults in the house, it was still absolutely insane. The girls were (are) super high maintenance and want to breastfeed constantly. They cry a lot if they're not feeding, and they're just starting to be able to put down for (very) short periods of time. When my parents moved out after a month, I was...pretty terrified and wasn't sure how we'd be able to handle it. We still had our nannies during the day, but when they went home around 5:30, life became even more overwhelming than it already was. Even now at 3+ months out, evenings are still stressful and hectic. If I make dinner, it's even more crazy. The babies do not want me to put them down, which makes it difficult for me to do anything, including play with Eddy. I feel bad that I can't give him the attention I used to be able to, but Ed has really stepped up with Eddy, and their relationship is amazing. Eddy really loves his daddy and it's so cute to see them together. 

We are extremely blessed, though, that the girls did not have to have any NICU time and have remained healthy throughout this horrible winter. Every time I get frustrated and start to feel sorry for myself for never ever leaving and house and never ever having more than a half hour to myself (to shower - the one thing I make sure I give myself every day!), I remember how blessed we are and how this is only a short time in the scheme of things. And we have wonderful nannies and I'm able to stay home. So I know I am truly lucky, but I'm not going to deny that this has been one of the hardest things I've ever done. (The only thing more difficult was seeing Eddy have seizures and be hospitalized and not be able to help him.) Every day now, though, the girls are getting more fun and sweet and adorable. Here they are when they woke up this morning. :)

Everyone asks me how Eddy is around his sisters. The honest answer is that he doesn't really notice them. Eddy is very good at ignoring anything that he doesn't like, or find interesting, or that makes him uncomfortable. If we ask him to kiss the babies, he will, but most of the time, he just ignores them.

On December 2, when the girls were three weeks old, Eddy had an important appointment at the Kirsch Developmental Clinic in Rochester.  This was the appointment where he was evaluated for autism. During the past year, Ed and I have asked many people, including all of Eddy's therapists and doctors, if they felt that Eddy was on the autism spectrum. All of them said the same thing: "I don't know." (Followed by: "The only one who can diagnose that is a developmental pediatrician.") Eddy has a lot of autistic characteristics, most importanty that he is nonverbal and lacks the social skills he should have at 2 1/2. But Eddy also has many characteristics that lead people to believe that he's not on the spectrum, like the fact that he is deeply attached to me and Ed and my parents. He also loves to cuddle and wants to be rocked to sleep, he loves giving kisses, and he is very affectionate. So leading up to the appointment, Ed and I weren't sure exactly what to expect, but we were both leaning towards an autism diagnosis. Sadly, I couldn't even be there for the appointment because the girls were three weeks old and I had to stay home to feed and take care of them, but Ed and my parents took Eddy to Rochester and I was part of the meeting via speaker phone. After the initial interview and observation of Eddy interacting with Ed and my parents, the developmental pediatrician said that she was on the fence about a diagnosis for Eddy. Just like everyone else had said, she felt that Eddy has some autistic qualities, but she said that the way he interacted with Ed and my dad made her question the diagnosis. She said that she was going to work with him one-on-one and call me back after she has made a decision about his diagnosis. So about twenty minutes later, the doctor calls back and says that although she was on the fence, after interacting with Eddy, she was comfortable giving him an autism diagnosis. She said that his lack of social and communication skills were enough to make her feel confident about giving him the diagnosis, but she wants to monitor him closely. She said that as he (God-willing) goes longer and longer without having a seizure and successfully weans phenobarbital, she hopes to see some of these developmental skills that Eddy currently lacks come out more and more. And as they do, she is hoping that he will gain some of the social and communication skills he currently lacks. Eddy is an enigma to all of the doctors that he has seen. No one understands why he has these developmental delays and if it is an autism spectrum disorder/neurological disorder that is causing them, or if it is a result from a year's worth of seizures on a developing brain and the horrible side effects of his anti-epileptic medications. So, I guess, we will have to wait and see what Eddy has in store for us. 

A quick update on Eddy and his seizures - he has not had any!!!! We are so incredibly thankful that he still hasn't had a "big" seizure since two weeks into the ketogenic diet in June 2013. He also hasn't had the myoclonic twitchiness that I described in the last update in October, after we had reduced his phenobarbital. We waited a few months, but we made the last phenobarbital reduction on Christmas Day, and he has done great with it! No twitchiness and no seizures! Right now he is down to 1/2 pill in the morning and 1/2 in the evening. The next step was going to be no pill in the morning and 1/2 in the evening and then no pills at all, but his neurologist wants us to continue to reduce extremely slowly to ensure no side effects; so the next reduction will be 1/4 pill in the morning and 1/2 in the evening. We are getting there, slowly but safely. We would appreciate continued prayers for a successful phenobarbital wean in the next six months. It's taking a lot longer than we had anticipated, but after seeing his reaction last September when we were decreasing every four weeks, we decided to slow it down and be cautious about it.

Eddy's development is coming along, as always, slowly but surely. The past few weeks, he has done better in his speech and ABA therapy than ever before. He is now matching five objects very successfully, which is a 2 1/2 to 3 year old skill! He started with matching two objects and has gotten up to five with excellent accuracy. He is also doing extremely well at identifying objects and can correctly identify an object given five pictures. He's getting much better at fine motor skills and can now complete the shapes puzzle that he has been working on for almost a year. He's also making a lot of sounds and will try to imitate sounds now. He has a very difficult time forming words, and his therapists believe it is because his low muscle tone extends to his mouth and he doesn't have the muscle strength to properly form words. But he is coming along every day, and we are so proud of him. Eddy is an amazing, sweet, precious little boy and we love him so much. 

So, thank you for reading this lengthy update. I hope that it won't be another four months until I'm able to update again. Life is crazy right now, and we're basically in "survival mode." Ed is working so hard this tax season and is trying to stay healthy. I'm doing everything in my power to keep Eddy and the girls healthy. I cannot wait for springtime and warmer weather and less flu/strep germs around everywhere so that I can get out of the house and go on walks and regain some of my sanity! Please pray for good health and development for the girls and for Eddy and that Ed and I survive this part of our lives with a smile on our face. :). Thanks to everyone who has visited, held babies, dropped off gifts and food. We have amazing friends and family in our lives and we are so thankful for all of you.