Happy Five!

There are so many things I need to update about. I have an entire Easter post thumping around in my head, a VNS update, a couple new friends we met I want to tell you about, and a possible new endeavor involving a developing, potential, maybe coming to fruition...could it be...a quasi play/support group for moms of kids with CP??? Hush, we mustn't ruin it. Saving for later.

I'm going to take a second to give credence to this very important day. It was on this day, five years ago, that Christian's mommy - moi - and daddy got married. Yes, we've made it five years, folks. I think it deserves an applause.

I felt five was a landmark of sorts. Like an anniversary of anniversaries if that makes any sense. You see you have your first, and then your fifth (that's us!), and then your tenth, twentieth, twenty-fifth...you get the picture.

But it was a heavier landmark for us, I think. I've heard the divorce rate for married couples who undergo some type of tragedy by which their lives change forever is like, I don't know, 90% or something ridiculous like that. I'm not interested enough in the actual percentage to look it up, nor do I want to give any credence to it.

No, not today. Today, I'm giving credence to us.

We haven't made it by any means. I mean I think if you've made it, you're dead, right? So we definitely haven't made it. But we're making it. We've made it to today, we've made it to five, and it hasn't been easy. Not that our marriage hasn't been easy. That's not what I'm referring to. Life has thrown us a curve ball or two. We've faced some pretty tough stuff. We've fought some pretty hard fights.

But we've faced them together and I'm proud of that. Damn proud.

I'm not going to get all mushy and emotional about it. He knows how I feel. And I'm not going to act like we don't have bumps and misunderstandings or hurt feelings. We're not perfect, nor is our relationship. But we work at it. And by now, if anything, our hardships have strengthened us as a couple. Christian has strengthened us.

Plain and simple, he's my best fried. I know that's cliche, but it's the truth. We do this together. We work at it together. And we're making it.

So, know what I did with my best friend??? (Keep it clean, this is a family place!)

Well, it was another landmark day...we got away! A....L....O....N....E. Like without kids, alone. For the first time. Ever. And it was about 48 hours of just us and whatever we wanted to do. So we went to San Antonio.

And my bestie and I - we celebrated five.

What's up San Antonio? Fancy meeting you here!

 

San Antonio River Walk

   

Look what the hotel left us! Thanks, La Mansion!

Happy Five!

Kindness Counts: Reaching Out

A very important post from a Dad's perspective can be found here from Matt, Cici's Daddy.

Preschool!

Finding time to blog these days has been challenging. Between work, sticky little fingers itching for the keyboard, and Christian's constantly changing regimen, it's been hard trying to come up for air.

And those sticky fingers belong to Lola if you didn't catch that. She's a feisty one and loves to bang away at the keyboard. Maybe she can guest blog for me next time!

After a handful (or three) of Sourpatch Kids, I'm ready to come up for some air!

We've got preschool on the brain! We had our transition meeting last week and it was actually really basic. We ended up meeting at the same elementary school Gabe went to. The special needs preschool teacher was very sweet and looked and spoke like she was freshly cut from the preschool teacher cloth. (That's a good thing, by the way).

Both the coordinator and the teacher explained that the first appointment was really more for intake and introduction but at the end of May we'll have a meeting there again with the OT and PT. They'll play with Christian and get to know him and then recommend which program he should be in. There are different programs according to need and after meeting with the therapists and then touring each program in action, we'll decide where Christian will go.

The coordinator and teacher answered every question and concern and reassured me that parents are welcome to join the class at any time. Music to my ears!

I'm excited about this prospect because Christian will be engaged with different "stations" that include OT, PT, activities, etc., so he'll get different stimulation all day. This is also something that would be considered "normal" for most three years olds. It's a "normal" life event. It's an experience he gets to have, and I get to have, for that matter. I'm looking so forward to this.

I'm looking forward to art projects and hand print artwork on the fridge. Christian will have opportunities to learn to communicate and we will have the opportunity to learn to communicate with him. Did I mention he's been a lot more vocal lately? He's definitely trying to communicate something, we just have learn what.

My biggest concern, however, is health. I don't know if I've mentioned this but the Keto diet is known to weaken the immune system. Case in point: Two back to back illnesses in the last three months where there were none to be found prior...ever. This is a concern for me, as you can imagine.

So with preschool on the horizon, Christian, I'm sure, will be super excited. And, P.S., he had a hearing test and passed. Not surprised, honestly. Anytime there is a loud noise the boy practically jumps out of his seat. But I'm always happy to receive any good and "normal" news about my boy.

So much more to update about, but I'm pushing the Sour Patch Kids aside for the night to get some sleep. Until next time!

Kindness Counts: K like in Kindness, K like in Karen

Yesterday's post in the Kindness Counts Series is brought to us by Maria, Jacob's Mom!

Enjoy!

P.S. More to come about Christian's preschool stuff!

Vegus Anyone?

Vegus anyone?

As in Vegus Nerve Stimulator, also referred to as VNS therapy.

Last week we went to Keto clinic for a check up at PCH and saw our Phoenix neurologist. I never know what to expect going there. I don't dread it like I do our Tucson neuro. I think I see one as a source of maintenance and one as a source of hope.

Just a side note about PCH - it's another world of which I am a member of. When we were done with our appointment, Christian needed to eat and instead of making him endure the discomfort of the car seat and eating at the same time AND the Phoenix heat, we decided to sit down at the mini cafe in the lobby. Back and forth were other hurt little kids, just like Christian. Little girls with bald heads from chemo, parents chasing after them, a mom asking what kind of backpack we had for Christian's feeding pump and then commenting that she liked it and had the same pump. All as if we were talking about what kind of shoes I had bought him - just common place stuff. It was heartbreaking and comforting at the same time.

Back to the appointment...did I mention I really like our Phoenix neuro? Anyway, we discussed Christian's recent progress. I told her it had actually been really hard to gauge due to him having back to back illnesses - an upper respiratory infection/flu and then a cold. Of course, that has increased the funky things in Christian's brain that put it into overdrive.

The doctor was frank but I listened, intently, to every word. To summarize, she said although the keto diet has helped, it has not been the "magic bullet" we need. And we cannot accept this as Christian's normal yet. We have to try and do more. I was so grateful for this because it was a doctor respecting how we felt about medication (which she agrees with, seeing as how Christian hasn't responded, and if so, has responded negatively) but offering her opinion. I think a lot of times doctors are afraid or reluctant to offer anything to assertive parents out of fear that we'll shoot them down. And some parents do. And just because a doctor offers an opinion doesn't mean I'll take it. But I still wanna hear it!

The procedure involves a small surgery and implanting a device under the skin that threads up through the vegal nerve, which connects to the brain. (Please excuse me if I'm not 100% accurate, I'm still a novice). Every time a seizure comes on, the device is programmed by a wand-like instrument and sends a pulse to the brain to stop the seizure. Yes, I said wand-like. If we decide to do this my boy will be a bionical Harry Potter waving his wand to cast spells against those evil seizures. Be gone, seizures!

The doctor also went on to say that even if the VNS doesn't offer seizure control it has been shown to improve quality of life, memory, and alertness. I'll take all of the above, please.

She suggested we do it and do it soon. In fact, that we do it by the next time we see her in three months.

We're heavily considering it. We've gone natural. We've done medication. We're doing (and will continue to do for now) the diet. But Christian deserves more.

We're researching, asking around, and, in fact, I'm in contact with someone locally that has had great success with her son after he didn't respond to medication or the keto diet.

So we're considering...to be continued...

Kindness Counts: Speaking from the Heart

Today's posting in the Kindness Counts Series can be found at Monster Max!

Grab a kleenex, Peeps! It's a good one!

Finding Christian

Christian cries. I've mentioned this before a time or two.

He cries when he's comfortable, he cries when he's tired, he cries when he wants to be held.

He cries when he's sick.

And he's a little sicky right now. He had a small cold, stuffy snuffaluffogus nose, and...another molar!

But Christian doesn't know how to tell us he's hurt or sick. So he cries. And sometimes it's a lot. It's emotionally draining plus sleepless nights with a few come-to-Jesus moments that equal two very exhausted parents. 

At the end of the day we are grateful for his crying because it's one of his only modes of communication.

Another mode of communication? Silence.

When he's crying, about 99% of the time we can calm him by holding him. He loves being held and anyone who knows Christian knows he's a snuggler. And he's quiet when he's held. Aside from the suckling sound he makes every few minutes, he's silent. It communicates to us that he feels safe, he feels better, and maybe that molar doesn't hurt so much when Mommy and Daddy are here.

Christian's communication is far from traditional at this point. But right now we look for the small things to find him inside of that little boy. He responds to touch, and being held, and patting his back, and when I scratch his head with my nails, his eyes slightly close like he's falling asleep as if to say - Keep going, Mama.

So he talks to us. We just have to pay attention. We have to find him.

Speaking of finding ways to communicate with Christian, I am so excited about next week! We have our appointment with the school district's special needs coordinator to talk about enrolling Christian in preschool! When Christian is three, he qualifies for preschool. And from what his PT said, the school we've chosen is going to be great! PT and OT all day AND ways to find ways for Christian to communicate!

As I end this blog post I feel a puddle of drool on my arm from my Christian bear and I hear silence.

I think he's communicating to me that he's asleep.

I took a picture today after bath time and it reminded me of a picture we had of Chrisitan at four months old.

He's still my gorgeous baby.

Kindness Counts: When no one is watching

The third installation of the Kindness Counts Series can be found at Samantha's Mom.

It's a goody!

Crazy Food Pump Ramblings

Coming off of a blog about kindness, this blog may not seem very kind.

But I don't think feeding pumps deserve any kindness when they beep at me and read "FEED ERROR" for no apparent reason.

It drives me insane.

I've gotten so enraged by this little necessary evil beep...beep....beeping at me that it won't budge another milliliter of ketogenic formula and it won't give me an answer, that I've considered throwing it through a window!

I've been so pissed off at this thing that I've yanked the tubing out of it, thrown the spare pump across the bed (onto a soft landing, but still), yelled at it, as if it were human and could understand. Maybe it is part human. And it taunts me.

I've even taken a meat tenderizer to part of the tubing on a bag that was clogged. The little plastic piece of titanium (or some substance mysteriously unbreakable) that hooks to the pump and pumps the food through never knew what hit it. Yup, the big mallet thing in the kitchen you only really use maybe twice a year, well it was used at least once this year. And I'm not ashamed to admit it.

But, alas, that mysteriously unbreakable piece of plastic is, in deed, unbreakable. The meat tenderizer was no match.

I'm sure this sounds like the crazy ramblings of a mother out of her mind, and it is! That feeding pump is going to get the best of me!

On a good note, Christian did GREAT with tasting yogurt yesterday. He moved his mouth and his tongue and gave great, big, hearty swallows quicker than he ever has. (Was it ketogenic? No. But our dietitian said a taste won't ruin anything. And nothing happened, so the yogurt stays.)

Hopefully he'll keep it up and we can say goodbye forever to that pump someday. And then that pump better watch its back because my meat tenderizer needs some usin'.