Growing Together

Today was the annual Lil Cooks Cafe at Jenna's middle school special education classroom.  The students work to create a restaurant environment: covering tables with paper, creating floral centerpieces, and waiting on their customers.  They did an amazing job and I loved being there.  My daughter, on the other hand, wasn't really feeling it...

Smile!No?

But you know what?  That's okay. 

Sure, there was a time when I would attend special functions and sadness would creep in and make me feel all emotional.  Ugh.  Sometimes that may still happen -- a little.  But if there is one thing I've learned over the years, it is that often, the best opportunities for making connections are the simple ones.  Like last night, at bedtime, when I tucked her in and she asked, "hug me?" so I did.  Then I gave her a kiss on the temple and she giggled hysterically, the joy coming from somewhere deep in her stomach, like someone on a roller coaster ride.  And then, "Again?" and again and again and again... :)  Moments like these are amazing.  And treasured.  Jenna is in her comfort zone, at home, with people she knows love her and take care of her. 

Then there are those times when she is not comfortable.  Moments like birthday parties, or restaurants, or amusement parks.  Or moments when a bunch of adults (mom included) show up at school for lunch.  We are not supposed to be there.  We don't belong in her classroom. We are overwhelming. 

Shortly after I took this picture, Jenna retreated into a small room, shut the door, turned off the light, and curled up to sleep -- no, not sad; actually, this is really awesome.  Just last year, Jenna would completely melt down with anxiety. She would bite her hand, scream, cry, and lash out.  On days when we were trying to do something special (out of the ordinary!) she was completely miserable. When this happened, I couldn't reach her.  No one could.  But these episodes are dwindling.  She is using more words. She is maturing, finding ways to cope, to help herself when no one else seems to be able to.  When the world gets too overwhelming, she is learning how to drown it out, how to find peace in that busy, busy brain of hers. And this makes me happy, not sad!  This afternoon was not about me.  It was about her.  It was about being proud of our kids and what they are accomplishing.  And I am so proud of her. She may not have been taking my order, or serving me food, but she most certainly was accomplishing something!  And who knows what the future holds? 

I do my best to understand my kids.  I may not be perfect, but as they continue to grow, so do I. 

Autism

At least he is talking out of his mouth now! :)

He Said "Hi!"

I am so excited! Cohen has always had a lot to say, he just never opened his mouth to say it - literally - until now.

He's still "mr. mumbles," but now his sounds have syllables, rhythms, and sometimes you can decipher what he is trying to say. One evening, a few days after Halloween, he went out with his dad and when they came back, I opened the door to a hummed "trick or treat." And a few mornings later, he popped up at the foot of my bed and murmured "Mommy, time to wake u-up!"

And now he is opening his mouth and saying - SAYING!!!! - "hi!" We can actually hear his little boy voice!

Yes!

Simple things...

Quality Kitchen Time

So, I was playing kitchen with Hannah a few minutes ago.

While taking my order, she informed me that I could get my own drink from the "drink-a-nator," because it makes drinks in one minute instead of one hundred.

She served me on a beautiful red dirt-devil dustpan.

And she courteously sprayed air freshener for me when the "restaurant" got too stinky from the spit-balls "those silly boys" threw onto the ceiling (with lots of eye rolling...)

Best service I've had in a long time.

Where did the time go?

Is it Feb already? Wow.

Time has been flying by. I hope to keep writing but it's been hard lately. This is really the only journal I have of what goes on around here, so it has been nice to go back and check dates, look at old pics, etc. To see the pics with the comments is great - kinda like scrapbooking, except that takes time I absolutely do not have now.

We are all doing well. We caught this cold/flu thing, but I think it's flushing itself out of our house. Finally. Craig went to Miami for work for three days and I've been working the night shift at home. Ha.

Cohen has been doing the head movement/vomiting thing still, though it seems to be less often now. He has lost weight. Now he is going through some testing. Two weeks ago, it was MRI with sedation (MRI looks fantastic, by the way!)

Today, we go back to the hosp. to take out a pH probe. Cohen was not a happy camper, waking up from anesthesia yesterday with this tube up his nose and down his throat. The nurse passed him to me.  Keep his hands away from his nose, she said, because nothing was taped yet - first, they needed to x-ray it and see if it was positioned correctly. NOT A GOOD IDEA!!! I haven't even mentioned that he was heaving after every breath, which made the whole maneuver that much harder. I managed to secure his hands, but within a minute of me holding him in my lap, he managed to rub his nose on my arm and work the tube out.

I was so upset. I told the nurse she should never have passed him off to me like that without someone sticking around to help. A repeat? No way. It just wasn't going to happen. I was done. We were done.

Ah, but once I vented, I was okay. Relatively. And the nurse told me she understood... maybe she was just trying to be nice, I don't know, but the point is, Cohen had to go through the whole thing all over again. Awake.

And mad. Very, very mad.

But, after all is said and done (and with a few wrap thingies on his arms to keep his face out of reach) we actually MADE IT THROUGH THE NIGHT!

So today is going to be a great day! No pH probe in about, let's see... two and a half hours. Yes!

The countdown begins...

A New Symptom? Or Complication?

I started to post about our Christmas, just haven't finished yet. As with a lot of things this week, it'll have to wait a few days. I want to include pics but they are so darn slllooowww to load. So a quick update instead. 

Cohen has had a rough week and a half. We had two visits to the ER last week. We went to the hematologist yesterday only to get a cool IV and IV bag to lug around with us for the rest of the evening. Not fun. At least Cohen only gets one needle stick now that he has the port-a-cath. I put numbing creme on before we go and he mostly gets mad when he's being held down. A lot less pain, a lot simpler. At least one thing is going better for him.

The problem? Cohen has been going through "spells." I bet there's a better word for them, but that's the only one I can come up with right now. His head rolls around on his neck like a bobblehead doll, then snaps back on his shoulders as his chin jerks up to the ceiling. The movements have gotten worse over the past few days, more pronounced, more constant. Last night, they lasted for about an hour before Cohen threw up all over the place. Again. He has thrown up nearly every day since the day after Christmas. This couldn't possibly be self-stimulating behavior, could it? Do these kids actually make themselves sick doing this?

Something tells me the answer doesn't stop there.

We go back to the hematologist this morning, then to the neurologist immediately after. They ran some tests yesterday to check kidney and liver function. We found out yesterday at the hematologist's office that during one trip to the ER, Cohen had a high number of ketones in his urine, which was probably from dehydration, but, well, I don't know... we have been pumping him full of Pedialyte when he can't hold down his food, but now Cohen will seem fine immediately after he eats (running around, dancing, humming, being a silly boy...) only to get sick a few hours later -- after the head stuff starts. He's lost two pounds already.

The question is this: what is coming first, the nausea or the head movements? And since he can't talk to us, we just don't know. Hopefully, one of the docs today will help us figure this out. But I have a feeling this might lead to yet more tests.

I have to be honest, I was freaking out last night. Just a bit. I love this little guy so much and I just want him to be okay. I'm sure everything will work out. I just wish it didn't take so long.

I will write more later. And post pics too. We really had a great holiday. I hope you did, too!

What is this?