Tuesday, March 25, 2014

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.

Thursday, March 20, 2014

A peek back through the years!

We received a GOOD phone call today! I love good phone calls. There was a cancellation at the developmental pediatrician's office, so we have been moved up to TUESDAY (as opposed to the end of April)! I was so excited that I'm pretty sure I squealed on the phone. I have felt like this doctor is going to really be able to help our boy in a big way, so I am very very excited about the appointment.

We have also just starting bringing Elijah to see a chiropractor. I attended the meeting tonight where we discussed the state of his spine. Yikes! I figured his poor spine has endured a lot, but tonight I learned that the degree of his S-curve is that of a 79-year-old man. :( I'm not even going to add this to my worry list. 

I thought it would be fun tonight to take a look back through the years! Here are some photos from the month of March in years past.

March 2014. Our awesome boys today.

March 2013. Silly guys!

March 2012. Aww, they look so small and cute.

March 2011. I LOVE both of these photos so much.

March 2010. I was on never-ending bed rest with Sammy during this time.

March 2009. I love this happy ski-goggled face.

March 2008. A month before the biggest surgery of Elijah's little life. You'd never know how sick he was here given his huge, happy smile!

March 2007. New babe with fuzzy hair!

Here's hoping you all have a great weekend! As always, thanks for peeking in.

Tuesday, March 18, 2014

Can you spell SLEEP?

We haven't really been doing anything exciting lately, so I took a photo of the boys coloring! Oh my goodness, look at Sammy's crazy hair! :)

Both boys were sick and then I caught the sickness last weekend. The older I get, the harder it is to recover from sickness. I hate being sick and being limited with work and play and exercise and all of the things I want to do every day. I don't have the patience for it!

Elijah has been doing great with 3/4 school days. I wish we could continue this through the end of the year. He gets to be involved in all of the morning fun and also recess, lunch and specials (gym/music/art). He misses out on math every day, so we have to work a little extra with him every night. He seems to be keeping up just fine, though. I found a few apps for the iPad that give him a little extra help. One of his favorite things to do after homework every day is quiz me on math and spelling problems. "Mom! What is 9+7" "16." "CORRECT! Great job! And how do you spell 'squirrel'?" By the way, his spelling is INCREDIBLE! The boy takes after his mom and dad and Gramps! He is a GREAT speller, way beyond his grade level (I have to believe). We do "spelling tests" every night (at his request) and he always impresses me.

I think it was Saturday when Dan and I made the decision to stop Elijah's sleep meds. There were a few nights where he had woken up for the day between 1:30 and 2:30am. NOT. OK. And his behavior was not good, to say it nicely. We stopped giving him the meds and things have gradually gotten better since. It's so hard to know exactly when he wakes up because he can be really quiet (but still wide awake), but I'm pretty certain the last two nights he has slept later than 2:30. He has had two "great" days at school this week, so that is awesome! Where do we go from here with the sleep concerns? I have no idea. I am playing phone tag with his sleep specialist (again), so we'll see what she thinks. In the meantime, we've resorted to doing light therapy in the late afternoons. We've also started having him drink half-and-half at bedtime! :) We are trying everything possible to help him SLEEP!

I have more "Sammies" to share!

Whenever he sits down for a meal, he wants someone to sit RIGHT next to him. He literally puts the two kitchen chairs you see in the above photo right next to each other so that they are touching. Then he says, "MOMMMMMMMY! Sit NEXT TO ME!" When I sit down, he says, "Mmmmmm" and snuggles into my side. :)

He currently only accepts "super gentle kisses" from me. If I give him "regular kisses," they get wiped off. And at bedtime, he has been requesting "a hug, a super gentle kiss and a back rub."

If you've seen Despicable Me, you'll know this reference. Sammy often squeezes my arm and says, "IT'S SO FLUUHHH-FEEEEE!" That boy and his movie lines.

He becomes OBSESSED with the ants that occasionally invade our bathroom floor. By the way, I have no idea how they ever could have survived this past winter, but they do occasionally show their little bodies. Sammy will not go into our downstairs bathroom without inspecting it first for ants. "MOMMY! TWO ANTS ARE IN HERE! KILL THEM!" He has labeled that bathroom as "the purple minion bathroom" because only bad guys go there. :)

This conversation took place the other night..
Sammy (peeking out of the bathroom): Mommy? What does "alone time" mean?
Me: It means you want to be by yourself for a little bit.
Sammy (peeking out again): Do you know what a "big bit" means?
Me: That means you want to be by yourself for a long time.
Sammy: Ok, then give me some alone time for a medium bit, please.

That's all for now! If you have room on your prayer list, please pray for answers for Elijah's sleep. On the days when he is up super-duper-ridiculously early, it affects ALL of us negatively. Thank you!!

Thursday, March 13, 2014

Croup: Season 4, Round 1 (Samson)

I feel like we have a couple of newborns in our house. Dan and I and the boys are all so ridiculously sleep-deprived I feel like we're all going a bit insane! To top it off, like a few rotten cherries on a melted sundae, Elijah has been showing interest in getting through the night without using a diaper. He has a goal in mind (President Business lego toy) and he is striving for it. We've told him that if he can keep a diaper totally dry through the night....he shall have whatever toy he wants. This has been seven years in the making!

This is all great and wonderful, but it coincides with trying to get him to SLEEP! He has been waking up in the wee morning hours to go potty, and then staying up for the remainder of the morning. He has been making slight progress in the potty realm, but the sleep keeps taking hits which affects so many other things. We are still finding our way with so many things.

Around 3:00 this morning, I heard the familiar stridor over the monitor. I ran into the boys' room and ran straight to Elijah by default. He said, "It's Sammy, Mom! Not me!" I went to Sam's bed and grabbed him, brought him to the bathroom and turned on the shower. Being the independent little Sammy that he is, he would NOT sit on my lap and would only sit on his little red stool. After ten minutes of steamed-bathroom time, I brought him back to bed with Dan and me which is a huge treat.

The ONLY time we allow the boys in bed with us is when they are sick. Sammy was so super cute, wrapping his cute little arms around my neck. Occasionally he would lean up and give me a big smooch on my shoulder and say, "I LOVE YOU" in a whisper. He melts my heart!

We made it through the rest of the morning with little sleep all around, but at least we all got some LOVE! At around 4:30, Elijah called Dan into his room to ask if he could join our bed with Sammy to "play." Um, NO! :)

Elijah was sent home early from school today due to an upset tummy. Both boys are a bit under the weather, and they both went to bed super early tonight. We're hoping for a turnaround tomorrow!

Wednesday, March 12, 2014

More Sammy funnies and a sleep/school update

Since I'm on a roll with Sammy funnies, I'll share a conversation that took place today in the car on the way to the grocery store. Sammy said to me out of the blue, "Eventually we are going to have to flush Elijah down the toilet, Mom." As far as I know, that was his first time using the word "eventually," which I found to be hilarious in itself, and he follows it with that?! I died laughing! Which inevitably was followed by, "DON'T LAUGH! I'm NOT cute!" Of course not [giggle giggle]!

Quick update on Elijah's sleeping. We've been slowly increasing his dose of "magic sleep medicine" over the past 9ish days and if anything, his behavior has gotten worse by a few degrees. He has still been waking up between 3:00-4:00ish every morning. I feel in my gut like we need to weather the meds for a bit longer. We'll see what the next week brings, along with a slight increase in dosage. I have no idea what our next step will be if this is a total failure.

Three-quarter days at school are going okay. Honestly, I think even this is a bit much for Elijah, but jeez. We need to get him back to school full-time at some point! We never know how exactly to decipher notes from his teacher because she tends to be so black and white, and having very little grace. So we never know if "needed several reminders to stay on task" along with a :/ face is something to be concerned about. If I wrote those words about him, it would be a great day! So we really never know how to appropriately follow through. I'm so done with first grade and so ready for second grade. 

We do try so hard to stay focused on the blessings amidst this challenging school year. We are SO grateful for his excellent academics. I can't imagine throwing difficulties in that area into the mix! Yikes! We are grateful for the people in his life who love him and who make an effort to understand him. The lady at the front desk who exchanges jokes with him daily. His special ed case manager who makes a sincere effort to understand what he needs in order to be successful in the classroom. His sweet bus drivers who greet him and say goodbye to him every day with total happiness and sincerity. There ARE many wonderful people surrounding him!

Since I started with a Sammy funny, I'll end with one, too!

Instead of "Pirates of the Caribbean," Sammy says, "Pirates of the Accordian." :)

Thanks for checking in! Wishing you all a great rest of your week!

Monday, March 10, 2014

My adorable and wonderful little Sammy!

I worry sometimes that our littlest cutie feels, or will eventually feel, a bit left out. We spend so much time and energy trying to help Elijah out, whether it be emotionally or medically or physically or behaviorally. There are so many times when we reward Elijah for doing things that Sammy does with ease, and therefore Sammy misses out on being rewarded. Especially for the past 6-9 months or so, SO MUCH of my thinking and efforts have revolved around Elijah's well-being. Dan and I do our best to let Sammy know that we love him just as much! We love this little boy so much! He is an integral part of our family and it would not be complete without him.

Sammy is such an awesome little person. He is SUPER funny and smart. He makes us all laugh constantly with his silly words and sounds and jokes and dances and songs. He is the best snuggler and asks me for "suggles" at least 10 times a day. He has a fierce independence that I've truly never seen to such an extreme degree in another person on this planet. He is shy, although he's becoming much more adventurous when it comes to interacting with people. He loves being at home in the comfort of his family and does not enjoy exploring new places unless we are with him. He loves his family, especially his big bro, more than anything in the world, aside from maybe his blankie and Cowwy. :)

I'll share some recent Sammy funnies, that I hope will make you smile!

bundled up = "bungled up"

The other night after I had put him to bed, he called me back into his room and said, "Mommy, I'm worried about Farky (Sparky, his puppy stuffed animal). He needs to be in my pile of animals!" I told him Sparky was downstairs and he said, "Fine fine fine. Will you please go suggle wif him, then?"

Another night after putting him to bed, he called me back in to say, "Mommy, I fink you are REALLY fun!" :)

non-fiction = "long fiction"

Cloudy with a Chance of Meatballs = "Cloudy with a Chance of NEATballs"

He says things to me all the time like, "No hugs or kisses or rubs. Just suggles!" I'll say, "Yeah, I don't want hugs or kisses anyway," and he'll say, "But...but WHY?!" and then I will be clobbered with Sammy love.

He will say to me, "Ask me, 'Who are you here to see?'" So I'll say, "Sammy, who are you here to see?" Tonight's response was, "I'm here to see YOU (pointing at me) and I'm here to SUGGLE!"

He likes to unzip his footie jammies down to his belly button and pretend like he's pulling something out and then zip them back up. As he hands me a pretend something, he'll say, "Here's a CARROT for you!" or "Here's a KISS!"

Sammy has always had super sensitive eyes. If he's tired or if the sun is shining in them, they will itch like crazy. A few months ago we were in the car and he was rubbing his eyes so hard they were starting to hurt, so out of desperation I handed him a mitten that was sitting next to me and told him it was magic. "If you hold it up to your eye, it will feel better!" It worked! Since then, he has latched onto a "magic towel" (an old burp rag, nice) and he won't go anywhere without it. He sleeps with it and brings it downstairs with him every morning. Occasionally in the middle of the night we will hear, "WHERE IS MY MAGIC TOWEL?!" so Dan and I will find ourselves desperately feeling around his bed and floor in the dark on our hands and knees trying to find that stupid thing.

If I look tired or rub my eyes, Sammy will ask me if I'd like to borrow his magic towel. The other day he made this offer and I said, "That is so nice of you! Will you go get it for me?" As he ran off, he yelled over his shoulder, "SURE! It's just a matter of time!"

One of the cutest things about Sammy is the way he pulls his pants way up over his shirt after he goes potty. For some reason I love this. :)

When my sister was at our house for Elijah's birthday party, she said, "Hi Sammy! How are you doing?" He looked at her and said super seriously, "NOT FOR SALE."

After I tried to give him a hug and kiss at bedtime, he said, "You can hug me but you CAN'T kiss me!" "WHY?!" "Because it's too late! When the sun comes up you can try again."

He does this thing where he puts his hands on his cheeks and pushes them way up toward his eyes and says, "This is SQUOOSHY!" Then he'll pull them way down toward the bottom of his face and say, "This is STRETCHY!"

We saw a scene on tv the other day that was gorgeous. Someone was boating through a peaceful river between mountains and blue sky. Sammy stared intently and turned to me and said, "That's the happiest place I've never seen! It makes me FILE (smile)!"

I always tell the boys to stop growing up and that I want them to stay little forever. Sammy said to me the other day, super defiantly, "I'm going to grow up TOO FAST!"

A random Sammy quote: "Mom, do you know what kind of a mom you are? A FABULOUS one!"

Any question that requires a number for an answer is, "seventeen." If I say, "Five minutes till bedtime!" Sammy says, "No, SEVENTEEN minutes!" "You can have one more cookie" gets the response, "No, SEVENTEEN more cookies!"

The boys and I play a game that involves them putting me to bed, reading me a book, singing me a song and turning off the light. The game is great until they wake me up. :) While playing "sleep" one day while Elijah was at school, Sammy tucked me in and said, "Good night, little kid. Get to sleep, would-ja?!"

There are other things about him I could share, but so many of them are hard to explain unless you know him. The way he sticks out and shakes his belly when he tries to get us all to laugh. His little lisp that makes my heart melt. The gallop-jump he does when he's excited. The way he giggles and smiles when he is genuinely happy. The way his forehead crinkles when he is concerned about something. His tiny, cute little arms and hands. The way he says Elijah's name when he's mad at him. His cute little deep voice. The way he squeezes my arm and says, "IT'S SO FLUFFY!" The impressive way he remembers movie lines and delivers them impeccably (and constantly). The way he runs to me screaming my name with happy excitement as if we haven't seen each other in ten years every time we are "reunited" (after spending an hour away from each other). The way he says, "It's LOST LOST LOST!" when he loses a toy. The way he refuses to eat dinner almost every single night, only because it was our idea and we set it before him. And then the way he wants to constantly snack and how he sneaks things from the pantry between meals he refuses to eat. The way he replaces SP or SM with F in almost every instance (spoon=foon, special=fecial, spooky=fooky smelly=felly). The way he runs really fast in open areas and says, "I'm so FEEDY!" The way he says, "I need some PRIBACY!" as he closes the bathroom door behind him. The way he snuggles so comfortably into my body when I wake him up from a nap and sit with him in the blue chair. The way he says, "Mommy? I lllove you."

I love this boy! Sammy, my life would not be complete without you!

Tuesday, March 4, 2014

Sleep and school

I haven't mentioned Elijah's sleep lately because it is just about the same as before...lousy. He continues to wake up very early every morning and he is absolutely unable to fall back asleep. While we were at the waterpark last weekend, he woke up at 2:30am both mornings. UGH. We have no idea when he is waking up at home because he does a really good job of laying in bed quietly, but we know it is super early based on the way he looks when we get him and Sammy out of bed at 6:30.

Since being back at school, we have been putting him to bed at 6:00 every night to make sure he gets as much sleep as possible. This helps with behavior/tiredness, but doesn't totally eliminate the issues. For the past few weeks I have been playing phone tag with his sleep specialist because I feel like we need to get to the bottom of this. We finally spoke on the phone today and she had a medication recommendation that she thinks might fit him perfectly. Back when we were weaning E off Valium (that he took to help with dizziness/nausea after his ear surgery), we noticed that for a week or so his behavior (and sleep, we think) were improved. Markedly improved. Dr. W chose a medication that is a cousin of Valium that E will take in a very low dose before bed each night.

I called Elijah's primary doctor today just to run this by her and she agreed that this is a great next step. So we started the meds tonight! We probably won't have an idea about whether or not it'll help for a good week or two since we are starting at a SUPER low dose and increasing to a still really low dose. Dan and I are filled with HOPE! Please please please pray that this will help him get the rest he needs! The medication we are trying is also prescribed for anti-anxiety, so this could potentially kill two birds with one stone.

Elijah is in the middle of his fourth week back at school! He has been doing half days and they have been going great! We think. No news is good news, right?! :) I talked to his special education case manager tonight and she confirmed that overall he is doing GREAT! He is still struggling with independence while doing school work, but so far he has managed to keep outbursts and blurt-outs mostly under control. He has been coming home with notes from girls in his folder, so he must be sending out some sort of friendly social vibes. :)

I'll be chatting with Dr. L tomorrow regarding these next few weeks. We think it would be best for E to do a few more weeks of partial days. We'd like to increase his time at school but wait until April to send him back for full days. On my list tomorrow: call Dr. L, call the bus company and sort out another schedule!

We have not continued (yet) with the memory-attention-learning testing because we are still waiting for insurance to approve it. We are really hoping this goes through because I feel like we would get major answers/help from that. E's appointment with the developmental ped is scheduled for late April and I wish it were TOMORROW. I just know we'll get answers from that, too. Lots of things are in the works to make our oldest boy a happier, more rested little guy.

On the Sammy front.. I have been gathering tons of funny material to share with you about our littlest sweetie. He is a STITCH! Seriously, he is one of the funniest people I know and he is only three years old. He needs to open a comedy club! He has more wit and creativity than most adults I know. He's a sharp one, and so so handsome. I can't wait to share the tidbits I've been collecting.

That's all for now! Thanks for checking in!

Saturday, March 1, 2014

4th annual waterpark adventure

Elijah in his "factory!"

Dan and I wrestled about whether or not to take our annual waterpark adventure this year since finances are super-tight, but we decided to just do it. We began this tradition before Sammy turned one, so this was our fourth year! We did a lot of reminiscing about previous years and how much we all enjoy this tradition.

I love capturing this photo every year. The boys peeking in, anticipating the fun as we check in..

The first thing we do every year is...JUMP ON THE BED! The little boys and I jump our hearts out and Dan pretends to be mad. "Daddy, LOOK! We're JUMPING ON THE BED!" "NOO! No jumping on the bed!" This continues until our leg muscles are weak. I love how happy this makes our boys. 

Another "tradition" is climbing up to the top bunk (this year it was Elijah's bed...his first time sleeping on the top bunk!) and taking a photo.

Our "first supper" with poses.

Sammy continued the jumping by JUMPING ON THE COUCH!

And posing, multi-socked, with feet on table!

"Sammy, give your brother a kiss!"

Waiting to get into the waterpark.

Elijah has always loved water and waterparks (minus being splashed in the face). He gets super excited about coming here every year. He anticipates it and loves it more than any other kid on the planet, I promise. Every time we drive by this waterpark (which is often), he excitedly says, "MY FACTORY! There's my factory! When oh when oh WHEN can we go back to my factory?!" 

Once we get inside, he runs around in a systematic pattern. As I mentioned, he does not like being splashed in the face and he becomes very anxious about it. He calculates when the big bucket is going to drop water over the splash area and plans his fun around that. The math that must take place inside his head!

Gradually over the years he has become braver, which has been so fun to see. The first year, he waded in the 4-inch pool. The second year, he went down the baby slide. The third year, he went down the little orange slide. And this year? He went down the twisty blue slide all by himself! AND he went down one of the "big" tube slides with either Dan or me, which he LOVED! He was literally all over the place, wanting to go down the big slide and go around the lazy river and swim in the wave pool and play in the kid area. He was never still.

Sammy? Wanted to do NOTHING. This photo captured one of the only moments when he left his chair.

We think it mostly has to do with his independence and not wanting anyone to tell him what to do. I know he would have fun...he HAS had fun doing these very things. The first day, Dan and I worked so hard to get even a single toe of his into the water. The only thing he would do without screaming was snuggle his swim towel.

The second day, we decided not to say a single thing about getting into the water but it did no good. He loved wearing his goggles on his head, but refused to get close to the pool.

Last night after our waterparking, we headed over to the MOA to ride a few rides and have dinner. The ferris wheel is one of the rides Sammy will tolerate (only if he sits with Mama), so we rode that before dinner.

At the boys' request, we had dinner at the Rainforest Cafe. The boys enjoyed the monkeys and butterflies and the rainstorm.

The boys took a calming, warm, silly bath before bed.

And enjoyed a bit of a movie.

Snuggle time with my boys!

We had two hours to spend at the waterpark this morning before checking out. As expected, Elijah ran around the place like crazy. Sammy sat in his chair and munched on an apple.

We had an amazing adventure! We went out for our typical IHOP breakfast afterward and also experienced our typical super-tiredness after that. We got home and literally went promptly to bed and slept for 2+ hours. All of us.

We are thankful for this experience! We love our boys so much and we cannot wait for next year's waterpark adventure.