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.
