Answers and questions and answers and questions.

We had Elijah's appointment with Dr. M today, his new developmental pediatrician. It was a positive visit. Dr. M is an incredibly smart doctor, a compassionate individual and he really truly listened to us as we explained Elijah in-depth. We talked for an hour and a half! Wow! There was no rushing at all, just a totally relaxed visit where we felt our words were valued, heard and completely understood. Perhaps more than they ever have been before by any other human being.

Once he had a good grasp on Elijah, he drew the below diagram. He explained that Tic Disorder (or Tourette's), ADD and OCD/anxiety, when combined, can mimic autism (the shaded area). This is EXACTLY what Elijah's neurologist recently said to us, almost word for word. Super interesting. So again, Elijah doesn't fall into any one category. He has tendencies toward about every single category, though!

And this doesn't really help him at all in school. He is currently receiving special education services under the Deaf and Hard of Hearing label, which is great and necessary. But the central focus is not directed toward what he really needs help with--social skills, attention and anxiety. It's a tricky situation. There are many pieces to this puzzle and there is no ONE answer, as we have known for so long. For whatever "reason," Elijah has bits and pieces of all of the following: Tic Disorder, anxiety, OCD, ADD or ADHD and autism. That's not to mention his hearing challenges and the frustrations that must go along with that. And then there is the sleeping difficulties, which magnify all of the above and which also may or may not be a result or any or all of the above!

Notice part of the word I jotted in the corner of this diagram. I wrote "diminished" because that is a word Dr. M used to describe our situation with E's schooling. When Elijah is not understood by his educators, his whole medical history and everything he has been through becomes diminished. That is exactly how I've felt this year and I've been unable to verbalize that. There are expectations of him that are very black and white, and he just is not black and white and cannot be treated as such.

Another note I wrote down from the visit was Periventricular Leukomalacia, or PVL. Dr. M explained to us that sometimes children born with congenital heart defects also are born with PVL, which is basically a brain injury that affects motor control and other developmental delays. It's a little bit difficult for me to read about it, although it would explain a lot. I can't believe I have never heard this until now. If Elijah does have PVL, it means that damage to some pathways in his brain was done at birth, or even before, due to either lack of oxygen or bad circulation. This is something we will explore.

What do we do now? Dr. M feels that we need to address some important things at school. I personally feel like we just need to get through the rest of first grade and move on from there. It might be a good idea to get him into a social skills group somewhere to work on the anxiety he deals with with his peers. Also, Dr. M feels we need to do deeper psychological testing. Possibly at school, but definitely with a neuropsychologist. I called the neuro-psych and of course they need loads of paperwork, both from us and school, before they can schedule an appointment, which won't be until at least May. More waiting. I feel slightly impatient, but mostly like we continue to figure more and more out about Elijah. I must sound like a broken record, but we are getting there. And Dr. M did have a few medication recommendations that he thought would be a good fit. He obviously wants to run them by E's sleep specialist/cardiologist first. These meds would hopefully get to the root of E's issues instead of just causing him to feel sleepy, if that makes sense. Let's take care of the anxiety and OCD and maybe then he will be able to sleep better. We obviously don't want him on meds long-term, but getting him through first grade without any further major drama is a big goal.

I was super impressed with Dr. M. He knew every detail about everything that we as Elijah's parents are feeling and dealing with. He was able to fully understand what a complicated "case" E is. There is no way to explain how good it feels to feel completely understood like that. And not just that, but to be given huge unspoken high-fives about what a good job ALL of us have done to get to this point, despite the challenges and struggles and frustrations. Elijah's list of AMAZING doctors continues to grow! He has the best people caring for him and I mean that with my whole heart. We are very blessed and thankful!

That's all for now, ha! If you made it through this entire post, you get an extra pat on the back. :) Thanks for reading! Praying you all have a great rest of your week.

Hand me that blue sky piece, please. The blue one. The one that goes next to that blue one.

Forget the 100-piece puzzle, I'm going for the 1,000-piecer! I can't even believe things could possibly become any more complicated for our boy at this point, but...here we go! I anticipate 2014 being the ride of a lifetime. Lots of ups and downs, but I know many answers will come our way, as well. I KNOW we will be taken care of. I know Jesus has our boys in his loving arms, and us as well.

First of all, Elijah is off of the Valium, yay! And...Elijah is off of the Valium, boo! The good side is that his vestibular system appears to have readjusted since surgery and this is wonderful news. He is no longer dizzy or struggling with nausea, and he is not needing medication to control these things. The bad side is that the medication was REALLY helping out with his behavior. After a few days of being off it, things are back to "normal." :( He is back to screaming at us when we ask him to do something (anything) and lashing out at Sammy (uhh, everyone) when things don't go his way. He is back to using icky tones when he talks (pretty much constantly) and saying unkind things to all of us.

I took Elijah to see his primary doctor this morning. My main goal of the visit was to address some things we have been noticing since surgery. His body has been doing A LOT of motor tics, and occasional vocal tics, as well. He is constantly rolling his head in a figure eight pattern with his eyes looking straight up. Sometimes his hands simultaneously open and close. Throw in some arm flapping and body jerking. His eyes seem to get "stuck" sometimes and go up and down when he looks at certain lights. At random times he will blurt out a loud sound that seems to satisfy something inside of him. All of these things (minus the eye movements) are things he has done his whole life. He has just never done them quite so much or intensely before.

Dr. Judy wants Elijah to have an EEG done on his brain in hopes of ruling out any "electrical" issues. There is a chance that these tics are benign responses to stress (recent surgery/difficult recovery), but they could also be signs of a neurological disorder such as tourette's syndrome. Or possibly some sort of seizure disorder, which I don't feel in my gut is the issue. I laughed loudly when she told me that the EEG had to be done while E was sleep-deprived. Ha! He is always sleep-deprived! She said, "Yeah, but you might need to wake him up as early as 4am!" Trust me, he will be wide awake. You have nooo idea.

We will be doing the EEG at Children's this Thursday morning. Coincidentally, that afternoon is his appointment at the sleep clinic. Next Monday brings surgery follow-up with ENT, including a hearing test to confirm left-sided deafness. If we can figure out the financial side of things, the memory-learning-attention testing will begin next Wednesday. Dr. Judy suggested we also get him in to see his neurologist and opthalmologist with these new symptoms, so I'll schedule those appointments tomorrow. We also need to connect with an audiologist. Thanks to our very kind friends Amy and Mitch, we have a few incredible (the "best") recommendations for pediatric audiologists, which we are very thankful for. I have also scheduled an appointment for E to see a developmental pediatrician (appointment not till April, ugh), who will be able to address OCD, anxiety, ADD, or whatever the heck is going on with our boy. Which leads me to..

Dr. Judy told me today that it is a really good sign that Elijah's behavior improved while he was taking a low dose of Valium. This could mean that anxiety is at the root of his struggles (sleep, too, obviously...but which comes first? The chicken or the egg?). Not that we ever wish for him to struggle with anxiety, but this is something we can address. And it could be a very big piece of the puzzle. Since his appointment with the developmental ped is scheduled so far out, Dr. Judy, being the incredible doctor that she is, offered to call this doc and ask for Elijah to be moved up in the schedule. She also told me that she would give Dr. M a brief overview of E and get his thoughts on possibly starting an anti-anxiety med. Typically we wouldn't want to cloud his brain or alter him in any way during the investigative process, but he is obviously really struggling. It's a bit of a tricky situation.

Dr. Judy verbalized what Dan and I have felt for a long time now. There is something we're missing. Once we figure out X, everything else will fall into place. We just don't know what X is yet. And things feel really complicated and overwhelming right now. I am assuming Dr. L (ENT) will clear Elijah to go back to school next week, which means calls from the principal and bad reports from the teacher will be starting up again, adding to the craziness. :(

We continue to battle for our amazing boy! BOTH of our amazing boys! We love them both so much. We couldn't do any of this without a faith in God, you guys! I don't know how anyone gets through difficult times without Him. We appreciate your prayers so much. Thanks for reading!