Speech isn’t all that

WARNING:  I babble ALOT in this post.

 

You don’t need anyone to speak to you about this tree to see the beauty in it do you?

 

 

 

I don’t need anyone to speak words for me to see the beauty here either.

Words aren’t always necessary.  They are only really needed when someone won’t open their hearts to “listen”.

 

Results are in from the MRI that Daniel had last week.

I can’t lie and say I didn’t shed a few tears, and the feel of my heart dropping one more time didn’t hurt.

 

I tried to not get my hopes up about the results.  All along they have told us that with Daniel’s brain malformation that it was very unlikely that he would speak verbally.  We do know he can say a few words when he wants.  He watches your mouth when you speak and he tries to form his mouth the same way, but nothing comes out.

 

But for some reason when they said lets do the MRI and see if the nerve tracts for language are there.  I secretly got a little excited. For the hope that Daniel would be able to have some speech.  Hope for the fact that maybe something in Daniel’s life could be “typical”.

 

Well this is a part of the email I received about the results, these are the few lines in an already short email (for those of you who get emails from HC, you know this is typical)

 

“The scan was analyzed for language tracts, but
these could not be identified on either side.  So I guess the outlook
for speech is not good.”

I read that repeatedly to see if I could dissect it and see if maybe I wasn’t reading it correctly, or if I could be misunderstanding it and that really things looked good but I was reading it wrong.  But nope, he’s pretty straight forward and to the point.  There is no way it could mean anything else.  Two sentences and each time I read them I get weepy.

 

Now I’m at the point where I read it and I think to myself, he said “I guess” so maybe he doesn't really know.  He said “speech is not good” but he didn’t say it was impossible right?  He said “language tracts could not be identified” but that doesn’t necessarily mean that they aren’t there, maybe they are hiding?

 

After a few more days, I will read those two sentences and it will read the way it is suppose to and acceptance will be there, but for now- they still hurt and I am looking to twist and over analyze those few words.

 

I have so many questions that I haven't asked yet because I don't know if I want to know any more.  I don't know if I want to hear the answers..

If those tracts aren’t there then why can he say a few words?

Is it possible that he could still have some speech, but that he just won’t be a keynote speaker at seminars?

Does it mean we should totally give up on verbal speech and just concentrate on augmentative and sign language?

 

Its kind of funny, when I get these little set backs it makes the defenses come out full force and I’m ready to attack.  So after a few tears have been shed, the reality is, Daniel is no different than he was a week ago before the MRI.  He is still one of the cutest little kids out there, and he communicates in his own special way.  And his way is beautiful.  It might not be the typical way everyone else does it.  But his expressive eyes, his facial features, his gestures, his sound...I know what he is saying and that is all that matters right now. 

 

The only thing this test means, is that Lonnie and I will continue to be Daniel’s voice for him.  We will tell people his thoughts (after he conveys them to us).  So if you hear me say ‘F*ck off” because you just said you doubted Daniel would do something.....its not really ME saying it, its Daniel!

 

But I second his thoughts! :)

Our lives are not over because of this, its just a set back, we’re still riding down that bumpy pot-hole filled road but I see a finely paved road just ahead.

 

Hey Daniel,

Momma doesn’t need words to know that you love me.  I know it from your eyes.  So regardless if people say you will talk or not, makes no difference to me.  I just wanted to make your life a little easier.

But just because they say you won’t doesn’t mean you can’t, and you should still try.  I know that you love to prove people wrong, look how far you’ve come already.

Just know that daddy and I will always be there as your voice to scream, to argue, to express your feelings that people don’t understand or listen to.

I know you have so much to tell the world, so many things to teach people. We will just find different ways for you to teach, and YOU WILL make a difference in this world.  You have already made a huge difference in me, and for that I am so grateful.

 

( I am turning off comments to this post on purpose. I know there are people who will say “I am sorry” and I do appreciate it, but right now I am staying positive and what I see in front of me is a little boy who is happy and he is ok with things, so, so am I.  But thanks for your thoughts.)

Bake Off

This weekend besides painting Caitlin (my oldest) and I decided to try our hand at making a special cake just for the heck of it.

While we produced our cake, Victoria was excited because her friends got her an Easy Bake Oven. Yes she is 16 yrs old and she got an Easy Bake Oven. Why? I asked too....and I got a “why not?”

So this is what got produced...

Looks like your typical chocolate cake. I know you’re thinking big deal its a chocolate cake - get over it! But watch this...

that is a 14 Layer Cake. Yep count’em...FOURTEEN layers with a chocolate glaze in between each layer. And its all made from scratch, none of this boxed cake mix stuff for us!! Frosting is from scratch too!!

If you decide to make one of these bad boys, it ends up weighing about 6 lbs. and you will need to make small slices. It is very rich and heavy. You’ll need a big glass of milk too. Then add on about 2 hours of working out to burn off the calories!

Here’s a couple more photos so you can get the full experience..

Making the batter for the cake

measuring out the batter into 6 different tinfoil pans to make the thin layers. Hell no we didn’t cut those layers!!

Ingredients for the glaze that goes between each layer - the glue I guess you could call it.

Looks like a giant stack of pancakes!

Note: If you make this yourself at home, make sure you put something underneath to catch all the chocolate that oozes out.

Tada – 14 Layer Cake

Caitlin didn’t listen to me throughout the process when I kept saying “Wash the dishes...keep the kitchen neat.”

Nope just kept piling those dishes in the sink!

And she LEFT them there for me. Can you believe that? She left the kitchen dirty and then took the cake home minus the one piece for Lonnie to try. What’s Up with that?!?!

Oh well, our next creation will be done with Victoria and her teal easy bake oven with the 100 watt bulb!

If there is anyone who wants to try making this cake, its fairly easy and you can find the instructions over at our favorite baking site. Bakerella! or email me and I can send it over to you.

I think if I ever make one of these again I’d try it with maybe a raspberry filling in between each layer and then frosted in a chocolate, or maybe a cool whip frosting!

What do you think??

Bye Bye Birdies.....Lions, Tigers and Bears too!

Way before Daniel was born, when we moved into our new house. I planned for what I wanted the “baby room” to look  like.  I wanted zoo animals.

 

Lonnie and I both worked together on this room, me with my fat baby filled belly sitting on the floor hand painting each animal. Lonnie at a different wall doing the outlining of each animal with black  marker. (We wanted crisp lines!) When we were done I loved it.  All the different animals.  The blue sky with white puffy clouds. 

Well, Daniel will be turning 4 yrs old in a couple of weeks and he has outgrown his room.  We call it his room, but in all actuality he might have slept in there a hand full of times and that is it.  When he was a little tiny baby he slept in a bassinet next to our bed.  At 4 months old he started having his seizures and I refused to let him sleep anywhere but with us.  We needed to watch him and make sure he didn't have seizures through the night and if he did, we needed to be right there to help him.

 

So, even though he didn’t really use this room, we did play in there a lot and we learned all the ASL signs for all of the animals. Or we’d sit on the bed and I’d ask him questions about an animal and he’d look at one for his answer.  “What flies in the air?” He’d look to the 4 birds. “Can you find the monkey?” He was so good at this one, because he didn’t just look at one of the monkeys. He’d first look at one, wait for you to say “Yep, that's the monkey!” and then his eyes would scan the room until he located the other two monkeys that were around the room.   

 

Once I figured I would trick him and I moved furniture around in the room to hide some of the animals that were on the wall.   And then I’d start again with my questioning about the animals.  “What animal has a really long trunk and uses it to drink water?”  Bam, he’d look towards the elephant.  Even if he was hiding, he knew that it was suppose to be there.  I’d see him look and I’d say “Oh no!  Where did that big elephant go?” and it would just send him into a fit of giggles.

 

 

Well, since Daniel still does not use the room, and because our little business of selling our custom made hats/crowns and such is taking off, we have decided to convert the baby room into my office. Although I was very excited to have a place for all the crafting stuff and materials (instead of my dining room table) I didn’t want to cover the work that Lonnie and I did on that room. So, that is why you see all the photos of each animal.  I know you’re probably saying, “ENOUGH already with the baby room zoo animals!”

 

We painted this weekend, “Juicy Cantaloupe” and “Ashwood Gray”. Here is a sneak peek. It’s not completed but it’s a start. I think it’s a fun room and Daniel even helped paint!  He loves all the bright ribbon colors. So, bye bye zoo animals and hello craft room!

 

 

 

 

Not the cute little room that the two of of made together with the expectation that our little baby would occupy. But, we now have the room that the three of us worked on together, with the expectation that orders will continue to come in and we’ll make a fortune on our craftiness. (That’s a hint people....spread the word.......buy some crowns!! We can do college color crowns, birthday crowns, big brother/sister crowns, over the hill crowns, princess crowns with wands. Even those superhero crowns for the boys in your life!  You name it, we can make it.)

Check the MRI off the To-do list

Today Daniel had his second MRI of his life.  His first one when he was 6 months old, and we found out that his brain didn’t develop “correctly”.  He has extra gyria (folds on his brain). 

 

Back then wasn’t a fun time. We just found out he has Infantile Spasms (Epilepsy at its worse). Then we got the MRI and found out that the reasons for the uncontrolled multiple seizures everyday was because of his brain.  Mind you dealing with the body blows that ripped your heart out every time Daniel had his clusters of seizures and there was nothing we could do to stop them.  All you could do is hold him, wrap your arms around him and tell him that it was almost over.  This is not comforting to a little child whose body is jack-knifing, who isn’t able to control his movements.

It sucked.  Imagine getting the phone call saying they had the results from his MRI “and its not good”.

 

I can tell you EXACTLY where I was, what I was wearing, where Daniel was. And I can tell you exactly where I sat on the floor, curled up in a ball and cried.  I didn’t know yet what was ahead of us.  All I knew is that the doctors assistant called.  Can’t remember the whole conversation – just bits of it.

• It’s not good
• Congenital Bilateral Perisylvian Polymicrogyria (I remember asking her to spell it because I knew I wouldn’t remember – it took about 5 minutes cause I couldn’t concentrate on what she was saying)
• He will need help the rest of his life, we will need to look into therapies for him
• He will have difficulties, the region of the brain that was affected is the area that controls speech, generally there is paralysis in the face/throat, they have breathing/feeding problems.
• Very rare, only 60 children in the US. (well we aren’t winning any lotteries here.  His Infantile Spasms is considered rare also)
• Do you need me to call your husband?

After the initial shock, I had to call Lonnie at work. That was a hard call in itself. His first baby – his little boy....WTF?? This isn’t how its suppose to go.

 

Anyways – that was the first MRI – the start of everything.

This MRI can’t be any worse than that right?  You’d think not. But we have to wait to get the results.

I know the process still sucked as much as before.  This time Daniel had to be put under general anesthesia.  When you have seizure history, its can be worse.  He still didn’t like it this time around either.

 

Walking into a room that looks like this – he knows its not going to be a fun time

 

 

Before and After photo

 

I had a thought last night.  WHAT IF... when they did the MRI and the doctor called to give us the results that the PMG was gone?  Or is was even less than it was before?  WHAT IF...they saw improvement?  How frickin cool would that be?  That if we just continued with therapy for a couple more years that he would catch up?  The speech would come, the better control of the body.  The walking.  His voice, so I could hear him say “mom” or answer me back with “I love you too”

 

IF that were to happen, you’d probably be able to find me again in a pool on the floor weeping, but for a completely different reason. If there is anything in this world I would ask for, if I could only ask for one thing. Give him his voice.  There is so much in there, I can see from his eyes, from his gestures. Just give him a voice, so others can see that he is there too.

 

Anyhow, now the hard part.  Waiting for the results to see if the nerve pathway for his speech has development.  IF its not there, he won’t talk.

IF it is there he may talk. But no guarantees. There are so many things with the brain that still aren’t understood.  Even if they are there, he may not talk, but we can work on more things during therapies to try to get the connections going.

 

I tell myself that I am not going to be upset if they aren’t there.  We have always been under the impression that the children with CBPP don’t speak.  They communicate to some extent and can say a few things that are mostly understood by family members.  And we were set in that path and that was just how it was.  So I am not holding my breath.  If the nerves are there....well then, they are there and I can have a little hope that I will hear

“momma i love you” sometime in the future in Daniel’s voice. 

But until then, I will whole heartedly take the open mouthed kisses and the sparkle in his eye, and his little hand on my neck.

 

For that I am thankful.

Someone Tell Me Why

How is it that I know there are tons of people around me, but I feel like I’m walking it all alone?

 

How come no one else seems to see the things that I see in my child?

 

Why is it that I feel I have to prove myself to people, when those people don’t give one $hit about me?

 

Why is it that I am disappointed in myself when it wasn’t me who failed in the first place?

 

I believe in God, but I don’t understand why he is making life so hard. I’m a good person...so what's this issue?

 

Why are we struggling and fighting to stay above water in so many areas -  because when we get to that beach, the thing that is suppose to be holding us together isn’t there anymore?

 

Just one of those crappy days. 

 

Say a little prayer for Daniel. 

Tomorrow he gets put under for an MRI on his brain.

It will tell us if the nerve tracts in the speech area are intact.  If
they are absent, it is very unlikely that he will talk.  If they are
present, he may talk - there is more to speech than just these tracts,
this is just something that we can see on this MRI.
The test itself has no more risk than a regular MRI - and not
significantly longer, its just getting put under with the fact that he has epilepsy.

Guess Who?!

Guess who we got to meet face to face?

<buzzer sound> NOPE, guess again.

 

I’ll give you some hints.

 

He’s got these incredible eyelashes.

He’s got a smile to die for.

And he’s got a cool mom.

 

 

 

 

 

 

Yep!  We got to have Logan and his momma, grandma & aunt over while they were in the area for an appointment. The boys got to play and we got to talk.

Sigh...it was so nice. Someone that knew what I go through, and someone for Daniel to play with.

 

Silly me, I only took two pictures and neither of them turned out good.  I was too busy talking! Plus I couldn’t get both of them to cooperate with me!

 

  

Thanks guys for stopping by!

CUPCAKES!

hello all of the cupcake lovers out there!

I'm Victoria, Daniel's older sister. i seem to have a fond feeling for cupcakes, although i never eat them, i enjoy baking them. I inherited this love for making cupcakes, cakes and stuff from my Grams before she passed away.

Yesterday i found the ultimate cupcake recipe online. i

It’s the $hit!(‘cuse me but there is no other way to describe it!)

 

rainbow cupcakes!

 

here it goes!!!

to make only twelve cupcakes;

one box of white cake, whatever company, they all taste the same to me,

six different food colors, gels work really well in this case, just to get the really bright colors.

six different bowls, six different spoons.

for the surprise, 1 1/2 cups of Sprite (or clear soda).

All you do is pour the powder cake mix into a large bowl, add the sprite, and mix.

all you do is substitute the sprite for all of the original ingredients that are suppose to go into the cake. easy peasy lemon squeezy!

 

separate the cake into six even portions.  and add your food coloring.

VOILA!

then for the fun part, add even amounts of the colors to each cup. whatever color you put last will be most dominant.

    

This cupcake pan was my grandma – it has special memories and brings good karma to cupcake making! She use to make us awesome cupcake treats.

sweet, huh?!Look at all the purdy colors

 

bake for the normal amount of time according to your box, generally 16 minutes at 350.

 

Let them cool.

 

Here is one cut open......I LOVE THEM.

FROSTING TIME!

mix a 16 oz. container of cool whip and one vanilla pudding mix (the small box), it kind of gets a little messy if you do it in the container, but hey, who gives a hoot?

clean up time! its a good thing to have your kitchen clean, and dish washer cleaned out before you start.

 

super fun! What a great thing to do with your kids.  I want to see pics if you do it.  Get fun and inventive. Super cool!

Battles

Just listen to this song

If you are the parent, grandparent, family member, close friend of a person who has special needs, you’ll get this.  I don’t particularly like country music, but the words. If you have a heart that has feelings for people, you’ll get it.

Now listen to this song

Again...the words. I am not a huge fan of the singer, but the words hit home for many reasons. Everything for Daniel is always going to be another mountain to climb. Everything single thing. From rolling over to eating to saying mama, its a battle.

I can almost see it
That dream I am dreaming
But there's a voice inside my head saying
"You'll never reach it"
Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking
But I gotta keep trying
Gotta keep my head held high
There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb
The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking
I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going
And I, I got to be strong
Just keep pushing on
'Cause there's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!
There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Somebody's gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!
Keep on moving, keep climbing
Keep the faith, baby
It's all about, it's all about the climb
Keep the faith, keep your faith, whoa

 

Ok, enough with this, I’m weepy today. Tired of fighting the frickin’ Cerebral Palsy, Epilepsy, (add your diagnosis here) battle. I want off the frickin’ roller coaster. I am tired of being on the uphill battle of Mount F*ck-this-crap. It seems impassible today. But only today, tomorrow we’ll start again.

But before you go...check out this post. This is oh so true, some days your faith in the world is dead. You just can't fathom how a person can be so ugly on the inside. Then you see/read/meet someone who just gives your a heart a little flutter that there are still some good people out there, that there is some hope.

 

Standing Daniel

Ok, are you ready? C’mon on stand up. We’re gonna do the “Happy Dance”

Bust a move!

Come on, don’t be embarrassed!

Dance till you can’t dance anymore!

WOW!!!! There you go, shake what yer momma gave ya

Get down with yer bad self!

Get jiggy wit' it!

Get your groove on!

There we go...everyone up on your feet! Happy Happy Joy Joy!!

WE GOT OUR STANDER!

FINALLY!

MONTHS AND MONTHS OF FIGHTING

AND LOOK WHOSE STANDING TALL!!