sickness continues

Not a whole lot has changed in the past week.  Becca shared her illness, as kids tend to do.  I spent most of last weekend on the couch or in bed.  A few days into the week, Daddy started getting sick.  Becca has a lingering cough that sounds really yucky.  I can hear a really raspy noise when I listen to her chest.  But there seems to be some improvement. 

The school year is over.  Becca had to miss a few more days.  Now granted, it was obvious through the day yesterday and today she really didn’t feel like going.  She slept a lot.  She clearly didn’t have the energy she usually does.  However on Wednesday my poor Honda Accord lost its Transmission.  So after getting the car to the Honda Dealership I had to get Daddy to take me to go pick Becca up after school.  But that left me Thursday and Friday with no car.  So no way to get her too school.  Oh well, summer break started a few days early kid.  Kindergarten is over.  

A huge thank you to Deanna St. John, Kathleen Wyatt, Cyndi Hester, and Ceclia Laws.  4 Fabulous teachers.  Not to mention all the therapists and other teachers (ie: super cool Librarian, and Art Teacher) who made her Kindergarten year so stellar.  I can’t leave that without also thanking all the other staff, who made both myself and my daughter feel so loved.  Even teachers she doesn’t have, or interact with know her.  They say hi to her in the hallways.  The admire her cute outfits (which makes it fun to dress her up!).  The other kids are also fabulous.  Easley Elementary has done such a good job of integrating these children with special needs into the school.  So these other kids are not scared of the kid in the wheelchair.  They see Becca and her classmates as fellow students and care about them.  Its so sweet getting to explain things to them when they ask questions.  Explaining things like why Becca doesn’t talk, or what her helmet is for.  By the way – my usual answer for not talking is “Some kids just can’t talk yet.  But don’t worry, she will be able to talk one day”  Kids understand that.  They accept that.  As for her helmet, I usually try and say something like “Well sometimes she falls down and can’t help it.  So this is to protect her head”.  I don’t want to scare them – esp the young ones – with trying to explain seizures.  So the simplest way seems to be she falls down and might hit her head.  After all – that is WHY she has to wear a helmet.  It isn’t the seizure itself, its falling because of the seizure.  

Next week my baby turns 6.  I can’t believe its been 6 years since she came into my life.  She has come so far.   I need to figure out that Flickr Photostream thing.  My idea was to have it show a picture from each year of her life.  Granted there is a whole lot to this whole blog thing I still don’t understand.  And darn if Blogger NEVER has restored those first couple blog posts I wrote.  

So now its time for 5 weeks of Summer break with Becca – then back to school.  I’m grateful for year round school.  As of now I look forward to it.  Ask me again in 3 weeks and I guarantee you I’ll be beyond ready for her to go back.  She gets into EVERYTHING at home.  You can’t so much as leave a drink on an end table without her getting into it.  

Oh – our present to Becca for her birthday is a new “baby” monitor.  Our old one wasn’t working so well anymore anyhow.  We upgraded to a video unit, that has 2-way voice.  This means from the handheld parent unit I can push a button and talk to her – without going into her room.  found this really helpful when she had a suspected seizure today and I was able to talk to her over the intercom (I was downstairs – her bedroom is upstairs), without having to go up there.  Because I didn’t get any kind of vocalization, or even her looking around when she heard me talk I knew I needed to go investigate further.  But it was nice to just watch her for a few moments too.  It was a quick seizure, but I think with her cold/congestion that is what caused the odd gasping sound she made.  It wasn’t her usual seizure moan.   The few other times I’ve tested talking to her over the unit she clearly looked around as if to say “I hear my mommy but I don’t see my mommy” .  The ole “huh? what? where is that coming from”  No I don’t normally plan to play mind games with my 6 year old.  

and yes – I know I said her birthday was next week, so why does she have this new toy already?  That is a benefit of her special needs.  We can do this earlier for her and its no big difference for her.  In some ways its better.  Next week she will get soo much stuff from grandparents she will be over-stimulated and crazy from it all.  Glad to separate it a bit.

That’s all for now folks.  I’m sure I’ll think of more to say as soon as I hit submit. 

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Friday, July 16, 2010 1:15 PM, EDT

 

I can’t believe my baby girl starts Kindergarten on Monday! I am so excited for her.

Yesterday we had her open house at school. Now granted I’ve already met her teacher during Rebecca’s IEP meeting, but yesterday was the first time Rebecca and her teacher got to meet. Rebecca loved the classroom. She instantly started exploring the classroom – no fear. Not that I expected any. Rebecca is the type of kid if there is someone there willing to pick her up and hug her she is a-okay. Instant love between Rebecca and her teacher. This class is going to be great for Rebecca. She is in a class made up of Kindergarten through 5^th graders – all with severe and profound special needs. Including Rebecca

there will be 8 kids in the class, a teacher and two assistants (this doesn’t include therapists who will be there to work with kids). As far as her seizures go we are holding steady. We had a little bump in

the road when we tried to wean her off of clonazepam. That turned out to be a mistake. Her seizures got worse. She started having bad atonic (drop) attacks. She was having more seizures each day as well. I spoke with her Neurologist and we went back onto her previous dose and things have slowly but surely returned to normal. We are still dealing with a strong gag reflex with seizures that is part of her new normal for seizures.

Sad to think that it has been nearly 5 years since we started seeing seizures. It was at her 2 month well baby visit that I convinced her pediatrician at the time that her repeated eyelid twitching episodes were

not normal. Yet in these 5 years, she has never stopped amazing me. She has an amazing wonderful determination. She has the most beautiful inner spirit. I love to snuggle with her, and just sit there, the two of us gazing into each others eyes – the same way most parents do with their newborn. Its a joy many nights going in at night to give her the late night dose of meds. I only barely have to wake her up to get her to take those pills. Then she snuggles back down to sleep. Although some nights she is

awake and playing when I go in. but I enjoy the nights when she is asleep. Then I get to watch her sleep.

My friends, you should all go in each night – at least for a week, and watch your children while they sleep. Give them a kiss. Tell them how much you love them, how beautiful they are, how much God loves them. I love to whisper these sweet notions into her ear while she dreams. Life is going to come at her hard and fast one day. I want her to to have absolutely no doubt by then that she is loved, she is beautiful and God loves her.

 

Friday, July 23, 2010 12:50 PM, EDT

 

I am so happy with how Rebecca’s first week has gone!

Monday was great. She instantly adapted to her new teachers and her new schedule. I got the cutest set of pictures, one of her in the car seat right before we got to school, one when I put in in the car seat at the end of the day, and one as we just pulled into the driveway at home. The first pic she has this “why are you taking another picture of me” expression.

Getting into the car at the end of the day, you can see her exhaustion, but she is all smiles. When we get home – she is zonked out. She was asleep, until she heard the camera.

The picture included for the journal is probably one of my favorites from that day. Its the encounter

of Rebecca and her teacher. So incredibly sweet. The first week, and few days back after an intercession back are always the hardest on her (she is in year round school, and was also for Pre-K). It just wears her out. I know she will be in bed super early tonight, and sleep in late tomorrow.

So happy news – part of the routine in her classroom is setting the kids on the potty at diaper change

times (most of the kids are not fully potty trained). The first 3 days, Rebecca of course hated sitting

on the potty (same reaction we’ve gotten at home). Well yesterday they finally had a special needs

potty chair. In the afternoon they set her there, she didn’t scream and fuss and just sat there like a

big girl and then……she peed in the potty!!!!!!

Thursdays have been one of our Therapy days for a long time. She is getting PT and OT on Thursday

afternoons. You may recall several months ago we decided to switch from PT twice a week to once a

week.

Well things continue to go so well that we are going to every other week. This is great! Another huge

step.

Seizures are doing a little better now that we are back on Clonazepam.

We’ll go back to Dr. Mikati in September. Around November is when we will have her annual MRI (our

first on our new Annual schedule – hard to believe it will have been that long between MRI scans)

We are working on self feeding – using a spoon, these days. She is doing better with this. The process

is still me holding her hand and guiding her through the motions, however she is getting the concept.

She loves to crawl up on the couch to snuggle or get attention. Its cute – except when she does it when

I am trying to eat something or use the laptop. Yesterday she crawled onto the couch and then tried to

climb into my lap (while the laptop was there). Okay, you say put the laptop down and snuggle your

child. But as soon as I do, she is ready to get back down on the floor and play again. Becca plays this

game of “up, down, spin around, elbow you in the ribs”

but all in all she is on a hot streak – the good kind!

 

Monday, August 9, 2010 12:05 PM, EDT

 

I don’t remember the exact dates – and those are rather irrelevant since it took me a while to get the doctors attention. The fact remains, we are now at 5 years of Rebecca having some type of seizures. It all started out with these strange little eyelid

twitches. At the time she was a colicky little almost 2 month old. I was still breastfeeding her. When these events would occur she would stop nursing. I knew in my heart, something was wrong. I tried to explain it to the Dr. who was our pediatrician at the time. He brushed me off. “Oh everyone’s eyelids do that now and then, its no big deal.” At our next visit a few weeks later I brought it up again. This time I was adamant. “NO! She stops nursing when it happens.”

I watched all the color drain from the man’s face. It was then I knew, in my heart that my fears were confirmed. This is serious. He suspected seizures. David and I had already talked, we were smart people. We had looked online. We suspected as much. We went to see the Neurologist at UNC. Appointment was horrible. By the time of our Appointment Rebecca’s seizures had changed. No

longer innocent looking eyelid twitches, she was having what is referred to as jack-knife seizures. Her arms flung out and her knees and legs pulled up – or something like that. We have old video. It looks like someone walks up to her and says “BOO!” but the scary part is it happens over and

over and over again in a period of 3 or 4 minutes. Occurring every few seconds. All in all, in that time she might have 50 to 100 seizures. We never really counted the number of individual seizures, not for years later. We were to focused on helping our baby through these horrid things. But at this first Neurology visit – the man they call a Doctor, did not care about our video. He didn’t spend much time with our child. He told us that she was having “simple partial seizures” and that surgery was likely

her best option. He sent us home with a prescription for Tegretol sprinkle capsules. Keep in mind – this was for a 2 month old breastfed infant! David and I were appalled. The MRI had not been done yet, simply ordered. No EEG had been done yet, a “routine” EEG was being ordered. We would learn soo much more about EEGs in years to come. I think we saw him on one follow up visit, him still insisting the same thing – despite the obvious pattern of her seizure.

All of that – 5 years ago.

We’ve come so far. Learned so much more about Epilepsy, Seizures, EEGs and everything else in this world. Rebecca has gone from that first diagnosis of “Simple Partial seizures” to Infantile Spasms, which has now progressed to Lennox-Gastaut. She will likely carry LGS for the rest of her life.

We will continue to hope and pray for a cure for Epilepsy.

I am so blessed that Rebecca is a fighter.

So no, we don’t have seizure control after these 5 years.

But we have a beautiful little girl who loves life. She loves people, giving hugs and kisses (big wet slobbery kisses!)

She is learning so much. Yes, she learns slower than everyone else, she learns at Becca speed.

Back when I was pregnant I never dreamed I’d spend my days searching though websites with adaptive equipment.

I dreamed of spending days at the park, pushing my little girl on the swings, chasing after her as she climbed up the slide.

It doesn’t matter that my days are not what I envisioned. I learned a long time ago to make peace with those dreams. I’ve been able to embrace a new future with Rebecca. One that involves getting snuggles on the couch for years to come.

You see, there are blessings to having a child with major special needs. The extra hugs. The reason to go into her room each night and watch her sleep (I have to give her medication each night).

5 years of epilepsy. Not what I dreamed about when I was pregnant, no. Nothing I’d wish on anyone. And I pray every day God will heal her. However in the meantime I’ll have to look into her sweet face when she climbs into my lap for a hug and a kiss and think, “I love you just the way you are!”