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. 

Anticipation and Abnormal Brain Waves

It's been awhile since I last blogged, and I could go into labor at any time, so I thought it would be a good idea to update while I still can!

I'm currently 36 weeks, 4 days pregnant with these twin girls. So far the pregnancy has gone extremely smoothly. I really can't complain at all, especially with it being a twin pregnancy. (I really can't complain, but I'm going to for just a couple minutes. Bear with me :) ). In the past week, I've gotten really uncomfortable and huge. I guess that's to be expected, but it's getting a little old not being able to bend over to pick something up. (And you don't realize how many times a day you bend over until you can no longer do it!) Luckily, the weather's been pretty nice up until this past week, and I've been able to cut it in flip flops for the majority of my pregnancy. Well, it was about 35 degrees the other night and I (actually) left the house, so I thought I should probably wear socks and shoes. I'm not even exaggerating when I say that it took me ten minutes, and a whole lot of grunting/sweating before I was able to get my socks and boots on. (Nice visual, huh?) That was when I really noticed how incredibly huge/uncomfortable I am, and how different a twin pregnancy is from a singleton pregnancy. (At least different from my previous pregnancy - Eddy was only 6 lbs, 5 oz when he was born at 40 weeks, so maybe I just had an easier go at it. But I remember walking for miles the week Eddy was born. Now I can barely walk to the doctor's office!)

But all in all, I have been extremely blessed this pregnancy. I have an ultrasound every week at this point and the girls are really active, my fluid levels are great, their heart rates are good, and they are growing at a very similar rate. They are small, but Eddy was small, and they are twins so that's to be expected. I was quite concerned about their size for the past several weeks, but last week my doctor assured me that they are growing fine, and he said he wasn't concerned about their weight at all. Last week, at 35 weeks, Baby A was measuring 4 lbs 6 oz, and Baby B was measuring 4 lbs 10 oz. (Ultrasound weight estimates are just that - estimates; so really we could be a pound more or less than those weights.) If these estimates are close to being accurate, that's 9 lbs of baby inside of me! When I think about this, I'm like, yes, I should be quite uncomfortable! But despite my discomfort, I am thrilled that they are still gestating and haven't been born yet. I'm shooting for anywhere from 37-38 weeks, and I can't believe how close that is! Months ago, I asked my doctor what the ideal time frame for twin pregnancy is, and he said 38 weeks. At the time I didn't think I would get close to this, because the average twin pregnancy is 35-36 weeks, but it looks like it could happen! I just want to keep them in there as long as possible to give them the best possible chance of not having to spend time in the NICU. (Especially because Olean doesn't have a NICU - I would have to go to Buffalo, and I don't want to be away from Eddy. It's already going to be so hard being away from him for a few days!)

Speaking of Eddy, he is doing well and is a sweetheart, as usual. People have been asking us how his seizure activity has been and if he's still seizure free. This is not an easy, or short answer, so here goes. At the end of September, Eddy had his first EEG since starting the ketogenic diet. Eddy started the diet at the end of May, and usually they want to do an EEG about every three months. This was just a short, one-hour EEG, not the overnight one that he's had many times. Ed and I were hopeful that his EEG would have improved even slightly, especially because he had been doing so well with seizure control. (Well, I was hopeful. Ed was assuming it had remained the same because we haven't seen huge strides in his development. It's definitely improving, but at an extremely slow rate.) I was quite nervous about the EEG because for about two weeks leading up to it, Eddy's sleep was incredibly bad. He tossed and turned literally all night long, and his arms came up constantly. It was almost like he had restless leg syndrome, but in his arms. The morning of his EEG I was researching myoclonic seizures (which are basically very quick seizures where muscles tense), and I was really hoping that Eddy's seizure type had not morphed into this. I read one website that stated that, "weaning barbiturates could provoke myoclonic seizures." Well, a week prior to his bad sleep starting (so the first week in September), we had decreased Eddy's phenobarbital (a barbiturate) again, as per our weaning schedule. As the wean becomes closer and closer to completion, Eddy's little body is going to have a more and more difficult time with withdrawal symptoms. His level as of a month ago was 10, which was down from 15 at his previous blood work reading a couple of months ago, and down from 38 from almost a year ago (when he was basically drugged out on phenobarbital constantly).

So, back to the EEG. We took Eddy to Rochester on September 30, and his EEG was at 12:30 pm. We were really nervous to get the results of the EEG, which we were going to hear at his appointment with his neurologist at 4:30 pm.  Just as I had suspected (but hoped against), Eddy had some myoclonic seizure activity show up on the EEG. Two times during the forty minutes that Eddy had slept during the EEG, his arms came up (like what was happening so many times every night). One of these occurrences was normal wakening, but the other was "a single epileptic discharge." Eddy's neurologist said that "technically," this was a myoclonic seizure. Additionally, Eddy's brainwaves are still very abnormal. He still has slow waves all the time, especially on the left side of his brain, and when he's asleep, he has these abnormal high amplitude spikes. So, basically, not good news at all. His EEG is the same as it was last fall, when he was having tons of seizures. Although he only had one "epileptic discharge," his brain waves are still very abnormal. The epileptic activity is coming from one area in his brain, the same area that the 25-30 seizures that were caught on the EEG in May were coming from. This area is in the left-middle part of his brain, right near his communication center. This explains a lot about why Eddy has such a difficult time communicating and learning. He has been trying SO hard to talk lately, but he has such a difficult time making words. He still loves his youtube videos, and every time he watches one, we make him sign and say "movie." Sometimes it comes across very close to "movie," which is exciting. A lot of the time it's more like "mooo-vv", but he wasn't doing this a month and a half ago, so it's progress! 

We are still very happy that Eddy hasn't had any "big" seizures since the beginning of June. It's tough to know if Eddy is even having seizures now, though. Luckily, Eddy's sleep has gotten much better in the past couple of weeks, and the number of times his arms come up has dwindled to almost none. His neurologist believes that the cause of the myoclonic activity is most likely due to the phenobarbital wean. We held off on decreasing his dose this month, because we want his body to be able to get used to the last decrease first. As much as we want him off of phenobarbital, we want to do it in a responsible and cautious way. I'd be curious to see his brain waves right now, because his sleep was at the absolute worst right around when he had his last EEG. Even though we didn't want to admit it, we both feared that the crazy sleep was due to seizure activity. Now that his sleep has improved tremendously (maybe his body has now gotten used to the last phenobarbital reduction?), I'm wondering if his brain waves are still as abnormal as they were a month ago.

So, as you can see, it's all very confusing. It's hard because we want to keep his "seizure free" countdown going because it was so encouraging for us, but due to "technicalities," I'm not so sure this would be acceptable. Darn you, epilepsy.

We are both so in love with that little boy, though. He is the sweetest, happiest kid around. He loves to give kisses and hugs, he has been laughing and smiling a lot, and he's just generally happy. He's also been extremely healthy for the past nine months, and I haven't had to give him Tylenol or an antibiotic once in the past nine months. This is pretty good for a two year old, especially one that was having three fevers a week a year ago! He takes tons of supplements/vitamins/minerals, and is on a very healthy organic diet. (Healthy other than the massive amounts of fat he consumes - but at least it's healthy fats - organic coconut oil, olive oil, and avocado oil.)

His development is improving, albeit slowly. But everything I hear/read says that as long as he's improving, things are good. If development stops or regresses, then we worry. His development is definitely moving forward. Sometimes it's hard to not want it to speed up and happen the way a "normal" toddler should develop, but Eddy has so many obstacles in his way that "normal" toddlers don't, and he's trucking along and making improvements every day. His therapists are happy with his improvements, and they all agree that he has been much more alert, aware, attentive, and engaged in the past couple of months than he ever has been before. His identification of objects and matching objects is always 80-90%. He definitely understands more than he is able to communicate, and right now, his communication is the area of most concern. We will just keep taking it one day at a time, though, and trust in God that He has the best possible plan in mind for Eddy.

In the mean time, we are just going to continue to enjoy our little boy and get ready to meet our new baby girls! Please pray for Eddy's development, and for healthy, happy baby girls! :)

Life is good!

It's been two months since my last blog post, so it looks like it's time for an update!

Life is great. I know my title says "Life is good," but that's an understatement. Life is great. Eddy is currently 85 days seizure free! 85 days!! We are so incredibly thankful. This ketogenic diet has been the miracle that we prayed it would be for so long. Eddy's development is also progressing well, and he has been healthy and happy for months now. We have also done two separate phenobarbital reductions, one at the beginning of July, and another at the beginning of August, and so far Eddy has done very well with the wean! His neurologist said to "expect seizures" on the first few days following each reduction because his little body has been addicted to it for the past eleven months, and it's a very difficult drug to wean. But Eddy has proven that he is tougher than phenobarbital and has continued to be seizure free! We will do the next wean at the beginning of September, then the beginning of October, then the beginning of November (when he will be down to half a pill once a day), then at the beginning of December, at which time he should be completely off of phenobarbital! Please pray that the wean continues to go smoothly.We have already noticed much more attention, quicker response time, more awareness, and more happiness from Eddy since we started the wean. I think that this increased "withitness" is due to both the reduction of phenobarb and the reduction of seizures, thanks to the diet. Whatever the cause, we are so grateful.

Between my last post and now, we celebrated Eddy's 2nd birthday! I can't believe our little man is two already. The day he turned 2 was probably the best day he's ever had. He was happy, attentive, laughing, and making lots of sounds all day long. The day before his birthday, we had a great party with a lot of family and friends. It was so nice to spend the time with so many people who love Eddy. My husband started a tradition last year at Eddy's first birthday party to unveil Eddy's "birthday video" that he made for him, and the tradition continued this year. It's basically a "year in review" video, and this year's video meant so much to me. I still can't watch it without crying, just to see how far Eddy has come in a year and to think about all the struggles he's had to endure between his first and second year of life. Watching it makes me realize how much God has blessed us in the past year, because even though we've had to go through a lot of difficult times, fear, anxiety, and sadness, He has gotten us through so much, and we have strengthened our relationship with Him and with each other as a result. And now, we do not take any of the "normal things" for granted that we used to, like being home instead of the hospital, going away for the weekend with Eddy, being able to go out to dinner and leave Eddy with a babysitter and not worry about him having a seizure every second we're gone. Life finally feels "normal" again, and it feels amazing.

This summer has been so wonderful. No seizures since the beginning of June, Eddy has been happy and healthy all summer, his development is improving every week, we've been able to take several quick trips away from home, and Ed has won four different basketball tournaments (that last part's for you honey :)).The ketogenic diet is getting easier every day, and although it is still extremely time-consuming and much of our day is spent preparing meals and getting Eddy to eat them, I feel like we're in a good routine with it. I've created more meals that Eddy likes, and now he isn't just eating the same thing all the time. He still eats a pancake every day for dinner, but I've expanded the flavors and his pancake menu now includes coconut pancakes, almond applesauce pancakes, coconut almond pancakes, pumpkin pancakes, zucchini pancakes, pumpkin zucchini pancakes, and macadamia nut pancakes. Other meals that he likes include flaxseed oatmeal, squash soup, avocado, and lamb with spinach and squash. I'm still trying to make his meals as healthy as possible, but I'm also trying to create foods that he actually wants to eat. Luckily he's still an amazing eater and really not picky at all. I am so thankful that this diet has been such a miracle. I was hoping for no seizures, but it's the minority of children who start the ketogenic diet who see a complete riddance of seizures; a lot of the time seizures are reduced considerably, but are still there. I'm hoping they continue to stay away for our sweet little boy.

Another exciting thing that has happened since my last post is that we have hired two wonderful nannies for Eddy (and to help me out with the twins once they are born). Eddy's babysitter last year, Mackensie, is one, and she will help me out 2-3 days a week. The other (the one we searched ALL summer for and finally found after interviewing lots of people!) is Amy, a school psychologist from the area, who will work the other 2-3 days a week. We are pretty darned blessed that both of our nannies have Masters degrees and experience with special needs children. We seriously could not have asked for better nannies! In the past couple of weeks, they have started coming over and learning Eddy's diet/supplements/schedule, and I'm starting to feel a lot better about sharing the responsibility of this diet and knowing that when I'm in the hospital in labor, they will be able to continue with it seamlessly and know exactly what they're doing. I was very worried for a long time about being gone and not having anyone else how to use the ketocalculator (the online program where you can create keto meals in the correct ratio and number of calories), and how to create meals and do all the weighing, but they have already pretty much gotten the hang of it, which has been a huge stress relief.

Regarding my pregnancy, I am 28 weeks pregnant with two little girls, and I still feel great! Knock on wood, this has been the easiest pregnancy, and I've felt great the whole time. I'm starting to really slow down with what I can do, and I'm trying to make myself sit down and put my feet up a lot more often than I'm used to doing (which is basically never!). It's been a huge help having Mackensie and Amy here the past couple of weeks, and my amazing husband has really stepped up big time. He wakes up with Eddy every morning at 6:30 am and lets me sleep in, and he puts Eddy to sleep every night - thanks honey, you are the best. :)

Well I just opened my fortune cookie from my chinese food from dinner, and my fortune says "Let's finish this up now, someone is waiting for you on that." I guess that's my cue to wrap this up. :)

Thanks for all of your support, love and prayers. They really do mean so much.

Weaning, Seizures, Meds, Ketogenic Diet

This blog post's title pretty much sums up in a nutshell what we've been doing since my last post almost two months ago. When I wrote that last post in May, Eddy was doing great. His development was improving, he was several weeks without a seizure, we were successfully weaning keppra, and life was good. As of May 8, Eddy was completely weaned off of keppra, his first seizure medication that he had been on since last August, and he was not having any seizures or negative effects from the wean.

I mentioned in my last blog post that I was worried about the week before we were supposed to go in the hospital because that week marked 8 weeks since his previous bout of seizures, and it was his "scheduled time" to have another bout of seizures. We were really hoping this time, since Eddy had been doing SO well, that the seizures would not come, but sure enough, literally to the day I told Ed he would have a seizure if he was going to, Eddy had a seizure. Starting on Wednesday, May 22 (two days before the full moon - Eddy has seizures one to two days before the full moon, but not every full moon, every other full moon - it's the weirdest thing.), Eddy had one seizure. The next day, Thursday, he had two. Friday, he had two, Saturday, he had one. Typically this would be the end of his bout of seizures and he'd be "good" for another 8 weeks, but this time, things got much worse the next day. We were at my brother's house for a cookout, and Eddy was playing in the grass with his toys. He started screaming and crying frantically, something he never does. We thought he got bit by a bug or stung by a bee. I picked him up and looked at him and his eyes were rolling back and then he started having a seizure. It's like he sensed the seizure coming and was terrified. The same thing happened about twenty minutes later. Then another ten minutes later. Because this was completely out of character for Eddy (normally his seizures happen when he is sleeping and he never cries prior to them), we took him to the ER. He continued having seizures on the way and when we got there. He had a total of seven, and we gave him an extra dose of klonopin, another one of his seizure meds, per the neurologist on call's suggestion. This seemed to help him, and his seizures stopped.  Because we were scheduled to go to Rochester in two days to begin the ketogenic diet and have a long-term EEG, and the next day was Memorial Day, the doctors in Rochester advised us to take him home Sunday evening.

Two days later, we packed pretty much everything of Eddy's into the car. We knew it would be a challenge to try to entertain him because he wouldn't be allowed to leave his hospital room for three days (he would be hooked up to the EEG and could barely walk at all.) Although we knew the week would be challenging, it was much more difficult than we thought it would be. Honestly, if my parents weren't there, I think I would have lost my noodle. They took off the entire week from work and slept at the hospital for two of the three nights we were there (I love you mom and dad - you're the best!!) At this point, my nervous, pregnant, hormonal self could not handle any more seizures. But the seizures actually got WORSE when we were in the hospital. Normally, Eddy would be in the clear from seizures and would be beginning his "8 weeks without a seizure" countdown. From Tuesday, May 28 to Friday, May 31, Eddy had, probably, 20-25 seizures. Luckily (for me at least), the bulk of those seizures, maybe 10-15, was overnight when I was not there, and my poor parents had to deal with the scary, terrifying ordeal from 3:00 am to 6 am on Wednesday night. On Thursday, the doctors came in and said that we weren't going to be able to go home until we got Eddy's seizures under control. One thing we could try was to re-introduce keppra, the seizure med that we had successfully weaned Eddy from two weeks prior. We did not think keppra was doing anything to help Eddy, and we thought that the seizure activity was more likely due to the lack of phenobarbital in his system (his phenobarbital level that week was only 16 - "therapeutic" is between 20 and 40.) If the keppra did not help, their next suggestion was to increase his phenobarbital or add another drug. Since we really wanted to get Eddy off of phenobarbital, we did not want to increase that dosage, so we were hoping the reintroduction of keppra would help, but we were not optimistic. But, as soon as they introduced the keppra back into Eddy's system, he stopped having seizures. They waited over 24 hours to see if he would have another seizure, and when it looked like things had settled, down, we were finally able to leave the hospital on Friday night.

 The only good thing about Eddy's seizures being out of control that week is that the neurologists were able to gather a lot of helpful information since he was hooked up to the EEG when he was having the seizures. What they found, in very basic terms, is that almost all of Eddy's seizure activity is now coming from the left side of his brain, which differs from much of Eddy's previous seizures, which came from all over his brain. His seizures are becoming less "generalized" and more "focal." The doctors said that oftentimes as babies/toddlers get older, their seizure focus becomes more clear and you can gather more information about where they are stemming from. Eddy has slow waves on the left side of his brain pretty much all the time, even when he is awake. This is a moderately abnormal EEG pattern, and it helps to explain why Eddy does not learn as fast as most children his age. We still don't know what is causing Eddy's epilepsy, or if he will grow out of it. We pray every day that he will, and we are looking forward to being able to get him off of all of this medication. Keppra is one of the only seizure meds that does not delay development, so we are not as concerned about him being on this one. The phenobarbital is still our biggest concern, and next Friday, which will mark four weeks since Eddy's last seizure (hopefully!), we will start decreasing the phenobarbital very slowly. Right now he is on one and a half pills twice a day. We will decrease his morning dose to one pill and keep his evening dose the same. We'll keep this dosage for about a month, and try to decrease it again. Please pray that we can successfully get Eddy off of the phenobarbital! It definitely delays development, something we cannot afford to happen right now with Eddy.

Since coming home from the hospital, Eddy has had a few more seizures, but he has been doing great for the past three weeks. He is definitely back to where he was developmentally prior to this setback. It always takes Eddy awhile to "snap out of it" when he has a bunch of seizures, and this time was no exception. He has made huge strides with his walking in the past month, and he is definitely more confident in himself when he walks now. He used to refuse to walk in public places, but now he wants me to put him down and grabs my hand away so he can walk on his own. He's starting to make more sounds again, although talking is a huge concern to us. I just want Eddy to say "mama" and "dada" on a regular basis. There have been several instances in the past week that he has said something that sounds like "mama," and I absolutely love hearing it. (He said more "ah ma," but still, it's close!.) Usually his word for mama and dada is "ah ah." We are hoping that speech will start taking off soon. Eddy turned 23 months old yesterday, and I can't believe my baby will be two next month!

So far I haven't mentioned the ketogenic diet! This has definitely been the biggest change in our life lately. It turned out that Eddy was already in ketosis when we got to the hospital. The vegetable-protein-fat diet that he had been on was basically the "modified Atkins diet," or MAD, which is an alternative to the ketogenic diet, oftentimes used in older children. Since Eddy was already eating all the foods he'd continue to eat on the ketogenic diet (I just needed to get used to adding a lot more fat!), it was not a huge change for him, but it was a huge change for us! With this diet, we have to measure everything to the nearest tenth of a gram. Eddy gets a very specific number of calories a day, in the ratio of 3:1 fats to carbs/proteins. For example, one of Eddy's favorite keto meals is a macadamia nut pancake. I crush macadamia nuts in a food processor. Then I take 18 grams macadamia nuts, 26 grams raw egg yolks (Eddy is sensitive to egg whites so I have to separate the yolk from the white each time. It's a pain but Ed and I have been eating a lot of egg white omelets as a result!), and 11 grams of organic canola or olive oil. I mix these together and put the "batter" on a griddle sprayed with cooking spray. Believe it or not, it cooks and turns out like a normal pancake! This is the closest thing to toddler-finger-food that Eddy can eat, and he has one every day for dinner. His other meals are more protein (ground beef, lamb, or turkey), vegetables (usually broccoli, carrots, or squash), and a lot of fat (coconut, olive, or canola oil). Eddy has already gained five pounds in the past two months, and he's getting to be quite the chunker. I emailed the ketogenic dietitian today and she said we will reduce Eddy's calories in each of his snacks, so hopefully that will decrease this crazy weight gain. He's been a trooper about the diet, and luckily he's still pretty good about eating. He has to eat and drink every drop of his meals/bottles, because his food is basically another medicine now. We have to make sure he stays in ketosis. We are really hoping this will be a miracle for Eddy. So far he hasn't had a seizure since about two weeks into the diet, and we're hoping this continues.

Another exciting event in our lives is that we just recently found out that the twins are both girls! I was beyond thrilled to find this out. I really wanted at least one girl, and when I found out both were girls, I was so incredibly excited. I keep thinking about all the cute girlie clothes I get to buy and what shade of pink we should paint their room. One reason I was so hoping for girls is because girls are like four times less likely to have autism, ADHD, epilepsy, etc. So that aspect was more "selfish" in that I really really just want them to be healthy. If this does turn out to be genetic and they also have the same problem, you will find me checked into a mental hospital. Just kidding. Sort of. I just pray they are healthy, and I pray that we will be able to figure out what is going on with our sweet Eddy, and we can help him to heal and develop.

Things have been great the past couple of weeks and I'm feeling so blessed. Eddy has been such a sweetheart and he is becoming more and more loving, attentive, and fun every day. He has won the hearts of his new babysitters (who we love and are a huge reason the past two weeks have been great - they give me a break every day for a couple of hours and it's so nice!) I hope things continue to go well and Eddy continues to progress developmentally. One thing I've realized lately is how fast things can change. I really hope that the next time I write a blog entry, I have good news to share! Thanks so much for reading, and thank you for all of your prayers.

TWINS and Other Mega Big-Time Changes

We are having twins! I know, it's crazy. It's still so weird for me to even say those words. We found out on April Fools Day, and I almost didn't believe the ultrasound technician...although when she showed me the other baby's heart beating, I couldn't really deny it! We are so excited now (it took a few days for the shock/fear/"I-can't-have-twins,-I-have-a-21-month-old-with-epilepsy" feelings to elapse, but I can definitely say that excitement is my overriding emotion now!) Ed was excited from the start (He's a man and I don't think men think as much about how much work it's going to be having twins; I'm pretty sure he was thinking "We're getting close to a basketball team a lot faster than I expected to!") We are due in November, but the babies could come in October. (I'm hoping they stay in there as long as possible though.)

So....that's big change coming up #1. Big change coming up #2 deals with our sweet little Eddy. We finally switched neurologists from Buffalo to Rochester. After months of waiting to get into our new neurologist, we had our appointment on April 22. It was a three and a half hour appointment, and we made sure to be very open and upfront about our goals and desires with Eddy, as well as all the natural/alternative things we are doing for him (because we didn't want a repeat of our last neurologist experience and we are more comfortable with our medical/parenting knowledge and are way past thinking doctors know everything. I think it's a good idea to have a team mentality with your physician, and make sure they are aware that everything is a discussion, and you aren't going to listen to every word they say just because they're a doctor. I still have a lot of respect for doctors (well, the good ones at least :) ), but I have just learned too much over the past couple of months to fully trust that doctors have all the answers, like I used to.)

Right now, we are taking Eddy to: a chiropractor once a week; a chiropractor/cranial sacral therapist/vojta therapist once a week; an acupuncturist once a week; a naturalistic doctor (ND) who specializes in autism and biomedical therapies once a month; a homeopathic practioner once a month; and his neurologist every so often, whenever he has an appointment. We also have Eddy taking lots of vitamin/mineral supplements, digestive enzymes, probiotics, fish oil, and a few other supplements. We have tweaked his diet even further from gluten free, casein free, to still GFCF, but now he really doesn't eat carbs or sugar at all, and his diet consists of 80% organic, cooked vegetables (this kid eats a TON of veggies!), and 20% organic proteins (egg whites, lamb, beef, bison, chicken, turkey, etc.) I also put organic coconut oil or organic olive oil on all of his food to give him the fat he needs. He drinks unsweetened flax milk and coconut milk and a lot of water. This kid is a healthy eater. We are extremely blessed that he will eat anything.

Another reason it is so important and helpful that Eddy will eat anything is because we are instituting another HUGE diet change at the end of the month. Eddy will be in the hospital in Rochester for about a week starting an intense diet called the ketogenic diet (Go to www.charliefoundation.org. if you'd like to learn a little bit more about the diet.) It's basically a very high fat, low carb diet (think Atkins on steroids.) Eddy will be eating 80% fats, and the idea is that his body will start metabolizing fats and will, in turn, produce ketones. When one's body is in ketosis, for whatever reason, it can help to control seizures. About 50-60% of people respond well to the ketogenic diet for epilepsy, and we are really hoping Eddy is one of them. I will have to weigh all of his food to the tenth of a gram, and it will be very important that he eats everything on his plate. It's a difficult, very stringent diet for anyone to follow, but I've slowly been preparing myself for this change, which is why I've taken out all carbs and sugar from his diet and started giving him the coconut oil. (A lot of the ketogenic diet revolves around heavy cream and butter, which Eddy can't eat because he's dairy free, so coconut oil and the fatty, canned, coconut milk will be a very important part of his diet!) I am going to continue feeding him all organic foods and nothing processed or artificial because his little body needs all the nutrients it can get. When the ketogenic diet really works, all seizure activity ceases, the child is able to get off of all seizure meds, brain waves normalize, and after two years, they are able to stop the diet and introduce a more well-balanced diet, and seizures stay away. That's the best-case scenario, and it's one we're really hoping for, but even if the mostly stops his seizures and improves his development, we will be very happy.


While in the hospital, Eddy will have a 3-day EEG (so the poor kid won't be able to even leave the room for 3 days!), and they will be mostly-weaning his phenobarbital. We have been waiting a long time to wean phenobarbital, and we are very happy it's finally happening, but we are also really scared because a normal phenobarbital wean is about 6 to 12 months long (it's a barbituate, and the body becomes addicted to it and goes through severe withdrawal if it is weaned too quickly.) Ed and I suggested weaning him down from 7 ml twice a day to about 3 ml twice a day while in the hospital, then we will slowly wean the rest over the next couple of months. The last bit of medicine is always the most difficult to wean, so I would feel more comfortable with this, even though we really want him off of the phenobarbital.

Eddy's new neurologist also said (and I've read this many times) that she would never prescribe phenobarbital to a baby older than 12 months because it delays development so much (which is the biggest reason we've been pushing to get Eddy off of it.) Eddy started phenobarbital at 14 months and will be on it until he's almost two. This year of Eddy's life is so crucial to development, and I'm so angry that his development has been stunted so much by the phenobarbital. I just hope that we see a lot of improvement when he's on the ketogenic diet and off the phenobarb.

Another change is that we are currently weaning his Keppra. He was at 3.5 ml twice a day, and now he's down to 2 ml twice a day. So far, the wean has been smooth and he hasn't had seizures (knock on wood!) I know it's been over two months since I've updated this last, so you're probably wondering about how his seizures have been. In the last entry, I wrote that he had seizures the last week of January/first week in February after going eight weeks without any. Well, Eddy went another eight weeks without any and had ten tonic seizures in one week towards the end of March. I'm really hoping the eight-week cycle doesn't continue, because he'd be due to have seizures the week before he's in the hospital, and that will be the week that we are finished weaning the Keppra. I'm hoping that all the prayers I've prayed and all the supplements/therapies/appointments Eddy has had are helping with his seizures and by God's grace, we won't have any that week. (I'd appreciate any prayers you could lift up for us about this!)

Eddy's development is finally starting to show signs of improvement, but for awhile there, we weren't feeling very encouraged. Because we're doing so many changes right now, it's hard to say what is helping, but something definitely is. In the past month, Eddy has been more attentive, more aware of his surroundings, more alert, has better eye contact, and his fine motor is starting to improve. He's still not talking, but he's starting to make more sounds. He's still very delayed (and the phenobarbital, as long as he's on it, will continue to delay him, I fear), but seeing progress is definitely encouraging. I'm not going to lie, it's hard for me to see toddlers that are around the same age as Eddy running around and talking and doing all the things toddlers are supposed to do; but I have to remind myself that Eddy is special, and he's coming along, albeit at his own, very slow rate. Eddy has had so many setbacks and barriers to his development, but he is working hard, and he inspires me all the time. He's such a sweet, special boy, and I love him more every day.

We aren't sure if Eddy is on the autism spectrum now, and a lot of his therapists and other professionals who have seen him don't really know either. Eddy is definitely not a clear-cut case. He has many symptoms of autism (not babbling, not pointing, a global delay, GI problems, especially constipation, a weak immune system), but he also has many very not-austistic qualities (he has a strong bond with me and Ed and my parents, he has a great social smile, his eye contact is good, especially lately.) One doctor last week said that she doesn't know if Eddy is on the spectrum, but she thinks he definitely has something going on with his central nervous system. The hardest part right now is not knowing what his diagnose is, whether we can heal him, what the best approach to healing is, etc. All that we know is we are going to keep striving, day by day, to do everything that we can to help Eddy, and we will continue to have faith that God is with us and is guiding us through this journey.