Do you miss pictures?

Well so do I!! A few weeks ago I managed to TOTALLY and fully wipe off my entire hard-drive. Dallas had to reinstall EVERYTHING and then it totally crashed like 2 days later. I have just left it sitting on his desk after I pretty much crashed it and haven't even tried to log in. I have lost all of my photos. ALL OF THEM. I lost all the photos of other people to but I did manage to take off a bunch of peoples BEFORE that.

Any rate, I get to use the macbook of D's and it has NOTHING on it. No iphoto, no blogs, no nothing. It's like a fresh clean slate that I can make a mess of and ruin. But it also means I have no lightroom and no way to download photos without take my lazy bum downstairs. In turn I haven't really gotten my camera out and use my iphone a lot so D can get pictures of our adventures. No blog photos either. ( maybe if Nicky took some she would either post them on HER blog or send them to me.)

But since we are full of unicorns and glitter I will just have to make do with witty words and fancy pants blogging stories.

Here is the unicorns and glitter story for the night.

Ty says prayers a lot in this house. We have always had to help him. The last few weeks he hasn't needed much help. Today, was a no help prayer day.

The dinner prayer went like this.

t: dear hedenly fader fhank you for da day. Fhank you for the food. Fahnk you for handy manny big construction job. pwease bwess the food. To grow big and strong, bwess the tywer for making it and da mom-e. in da name of Sheeshs ( jesus) cwrist Amen.

The fixed version: Dear Heavenly Father, Thank you for the day. Thank you for the food. Thank you for handy manny construction job. Please bless the food so we can grow big and strong. Bless Tyler for making it and the mommy. In the name of Jesus Christ AMEN.

Then the night time prayer.

T: dear Hedenly Fader. Fhank you for da day. Fhank you for Mickey Mouse. Fwank you for the dadd-e, fhwank you for the mom-e. fhank you for the baby. Pwease bwess the baby that it will grow big and strong. Pwease bwess the Tywer that he can cheach da baby how to pway soon. We ashk vees fwhings in the name of sheeshas Christ Amen.

The fixed version: Dear Heavenly Father. Thank you for the day. Thank you for Mickey Mouse. thank you for the daddy. Thank you for the mommy. Thank you for the baby. Please bless the baby that it will grow big and strong. Please bless the Tyler that he can TEACH the baby how to play soon. We ask these things in the name of Jesus Christ Amen.

A huge smile spread across his face cause he can do it all by himself. We kissed him and he told us goodnight and THANK GOODNESS we have heard not even a peep tonight.

Our adventures with Grandma and Grandpa will continue tomorrow.

It will be better when....

When Ty was diagnosed with his bleeds we knew we were in for a long haul. In the back of my head I always thought he would be "fine" and he would be one of the lucky kids who had no effect from the bleeds. His was SEVERE and I really thought he would be "FINE."

The media is full of stories of the babies being born early and being perfectly healthy, nothing wrong and 100 percent perfect. The media seems to forget to report the ones that don't turn out so fabulous. ( Remember the McCaughey sextuplets. Most don't because Jon and Kate took over! Some even speculate that it is because 2 of the babies have Cerebral Palsy.)

Cerebral palsy effects everyone differently. No two kids are exactly alike. What works for one won't work for another. A preemie who is 28 weeks, could be in a wheelchair while Ty who is 25 weeks is not. A 24 weeker who has some delays but no diagnosis for CP and is now older while another 24 week twins with only one surviving and has cerebral palsy but isn't in a wheelchair but is still struggling to walk.

Full term babies can be struck with Cerebral Palsy. Babies have strokes in the womb and are affected by Cerebral palsy. Some can't eat on their own, while others can. Others are fine but can't run and jump.

One phrase heard often is " It will get better when... ( insert whatever you wish would get better)" But what I didn't' understand is that the chances of "Whatever" working just like I thought was seen through my own wishes.

Tyler walks.

When he was learning to walk and going through therapy we had a therapist who said he would never walk independent of a walker. She also said that we should hold him back from walking till his gait was "normal." We soon left that therapist and he soon walked on his own. His gait is not normal but I thought all my problems would be solved when he could walk on his own.

Again, not the case. His stamina is not "normal" and therefore distances are really hard for him. He can't be expected to keep up with a normal 5 year old because ( as much as we try) he just can't go that far for that long.

I thought, if only he could talk then it will be all better. While the talking makes parenting SOOOO much easier, it didn't solve all the problems. It gets easier, better and the works but nothing fixes what we thought was "normal."

What did get better, was my ability to cope. My ability to be handle when it didn't get "better" like I thought. We still rejoice in his abilities, we celebrate the milestones and in the end we remember where we came from.

We have till six

When we had Tyler we were not worried about his talking.We knew he would be OK. And we truthfully thought that words would just come.

Instead we really worried about his mobility. We did extra therapy to get him moving. We moved therapists when they told us that she didn't think he would walk. We encouraged him to move even if it was not a perfect gait.

Around 2 there was still no words but mom. There was more and more frustration. As time went on 3 came and went and still no words.

Moving back to Utah part of the reasoning was to get him around other kids ( like cousins that we would see much more frequently.. we had hoped) and sure enough. Just after Christmas we got a few words.

We go to therapy in Salt Lake City ( up around the U) and we sit through a 3o minute session then dive into Physical therapy or Occupational therapy or both. That leaves us there about 2-3 hours every Monday. It is a 100 miles round trip. Then through out the week we have our regular Doctor appointments. ( We see 9 specialists a Year. Some are every six weeks)

Something clicked in the last six months. I am not sure if it was school or just him. But we officially have WORDS.

Some words are only first letters of the objects he happens to be describing. Some of the words are not pheoneticly ( even spell check can't get that one right.. sorry!) correct. Sometimes he breathes in instead of out. But his point is getting across.

And the FUNNY side. He can spell. He can't say the word but he can spell. He can Spell Tyler and Mouse.

(I will try my best to share his words and how they sound)

DAAAD ( its really drawn out but it was the only way we could get it loud)

Key ( mickey)

Ick ( Nicky)

Gun ( signing more for Morgan)

x ( the sound for Max)

Ko ( koy)

K ( Kayden)

ex( Lexi)

pizza ( the z is said breathing in and spaced from the rest of the word)

doe ( done)

Ball ( signing at the same time)

All the animal sounds ( that are normal any way)

GiGi ( grandma)

Pop pop ( grandpa)

The whole alphabet and most of the sounds. And many many more. We are even starting to string several words together. It is VERY exciting to hear words.

If you spent time with Ty... You will start to see that new personality and lots of new words and when he can't get his point across a very frustrated little boy. But we have words.

They say speech needs to come by 6..... So I hope we keep going!

Left Without A Voice

It's just after 12 and I rush downstairs to wait by the window.

My little dude is suppose to be home soon. He has NEVER gotten home after 12:10 in his whole preschool career.

I sit by the window watching.

Waiting.

The noon news ends and it is 12:30 and STILL no Tyler.

I call the school and the teacher says he has been put on the bus. Her part is done. Here is a number. I feel a lump rise in my throat and call the number. The rude lady on the other end gives me ANOTHER number.

12:35.

Where are they? We live less than half a mile away from the school.

Something is wrong.

12:40

The lady gets back on and says that the bus had a few extra kids today and they are on their way.

12:55

FINALLY the yellow bus rolls up.

The bus Driver explains that a mom forgot to be there to pick up their kid. So they waited a little longer. Then went about their route. They were over by maverick ( not sure WHICH maverick there are 2 one CLEAR in town and one JUST up the street) and realized that they still had Tyler on the bus. So they finished what they were doing and brought him home.

Sorry... it wont happen again.... And the Aide pipes in... didn't you get my message?

No missed call on my cell phone.

AND I was ON my phone so no message on my machine like she claims.

Tyler ALWAYS sits right behind the bus driver. How can you FORGET? And you have a lady who's job it is to MAKE SURE all the kids are off the bus and safe.

It is your job.

Tyler is non verbal. He doesn't really "talk" He can't tell you what his name is. He can't tell you something is wrong. He can't tell you you forgot to take him home..And most importantly he can NOT tell ME that they hurt him.

He was on the bus for 45 minutes. MUCH longer than he NORMALLY is on that bus.

Panic. Fear and then worry. Replaced by a sense of relief that he was home.

But who do you go to? I waited till I was done being SOOO mad.

I called the district transportation. They apologized and said they were sure it was a sub. I assured them it was his real bus driver.

I feel mad.

I feel angry.

I feel mad at myself.

I feel sad.

How could I leave him without a voice?

My MOST prized possession in the WHOLE world was left without a voice

Communication AGAIN!

Communication is such a HUGE huge part of life. Sometimes it is UP and sometimes we are really really low. I think it depends on how much improvement we feel or see AND if I feel, as a mom, that I am working with him enough or not enough. One thing I have to remind myself a lot is that I can't change where the damage is in his brain. I can't control what the damage did. Though there is a lot of mommy guilt over it I often still wonder if I did everything I could.

We have had Ty in speech for what feels like forever. We rarely see improvement. In fact so rare that discouragement, defensiveness and anger, mixed with guilt is often found. Why would I be defensive? Because of the above mentioned mommy guilt. Little comments made makes me feel bad or that I am being judged. Anger because I am trying and we DO want him to do these things. And then of course the mommy guilt kicks in again.

Having his IEP the last week and gearing up for the CP clinic at Shriner's my mommy guilt was rising. Its hard to hear that your child is only participating at a specific level because of his disabilities. Its hard to know that they aren't sure if he can do certain things because he doesn't talk. Or sometimes they don't think he can do things because he is so stinking stubborn he won't participate.

While I went to my parents I used the die cutters and got us some Numbers and letters. All different colors and laminated them. Cut them out and we have PLAYED non stop with letters and numbers.

At first I thought it was just gonna be something he would take and throw ( which he does) but he gets what it is. We went through and went through sounds and he can say more than a dozen sounds. Putting them together with something else is still a huge struggle but we are getting sounds out.

Everything we do every single day is trying to get a new sound out for Tyler. Everything we pick up we sound it out. Every circle, shape, etc we ask him what it is and ask him to draw it for us. We encourage him to "pretend" play with whatever he is watching.

In the last 4 weeks he has started doing all those things that we have worked so hard. It is a SLOW process and we are frustrated some days. I honestly feel that communication with him right now is MUCH MUCH easier.

The best thing for me is if I ask him a yes and no question I get a real answer. Not a sound for yes. But a YEAH. A real no and he has an opinion about those yes and No's.

Today we also quizzed him in what letter was what and hew as able to go through and pick correctly. I now get to try again to see if it was a fluke or if he really does know his letters. He knows his numbers and shapes. What more does a 4 year old need right ?

A 4 year old needs a voice. We are finding that voice.