Been Forever : an update

It has been such a whirlwind of a summer. Since it is slowly winding down and I am trying really hard to wind stuff up and get things caught up. I thought I would send the before school update.

Ty has done FABULOUS this summer. He didn't qualify for summer school ( boo!) so we decided we would do private therapy until his first surgery of the summer. Of course that never goes to plan and his surgery really messed up the entire month of July and Augusts therapy schedule.

The bonus: we took time off from speech and the toot face is now TALKING. He is doing fabulously well. He picks up 7-8 words A DAY! He is doing really well. Some are not phonetically correct but they are working and functional words.

He received his phenol injections and his tonsils out at the same time in June. Which messed up our casting schedule so we didn't get casts on. I think for summer that works but for winter I would LOVE to see him get casted again.

I am so thankful for Ty and all he is doing. Parenting got HUGELY easier. We hope it continues on the upswing.

The other stuff going on is driving me insane!! Dallas has been sick and he has been in and out of the hospital and them not finding anything. We think it is gal bladder and only have a few more tests before we can finally make them take it out.

We have also been dealing with infertility. 2 years we have tried to get pregnant and have resorted to IUI treatments only to have our meds TRIPLE the cost from our first month so we have had to take a step back. It has been the HARDEST thing for me EVER.

But that is us.

Fight for Preemies

November 17th is prematurity awareness day. For the month of November we have been blogging our journey with prematurity and blogging for awareness. The theme of the March of Dimes this year is one that I can't help but be passionate about. This year they are using the phrase "Fight, because Babies shouldn't have to!"

I fight because Tyler and millions of other babies shouldn't have to.

Prematurity is the leading cause of Death of American newborns. Those who do survive often have life long challenges.

They fight everyday.

Tyler was born at 25 weeks and 3 days into my pregnancy.

94 days before he was suppose to. That means he fought for 94 days to live so that we could take him home. But the fighting hasn't stopped since.

He fought through a Patent Ductus Arteriosis, Grade 3 and 4 brain bleeds, Chronic lung disease, Retinopathy of prematurity, PVL, Cerebral palsy, hydrocephalus and craniosynostosis. He has been shunted, endured countless hours of therapy, bracing, brain surgeries, heart surgery, Skull reconstructions and low vision. All because he has had to fight. All because he came 94 days before he was suppose to.

I fight because every day we struggle with food, sensory processing, cerebral palsy, high muscle tone, no words. Every day I fight to help him lead a life that is less challenging. Everyday I try to do one thing that would make his world easier.

Everyday I try to tell our story so that ONE mom never has to feel the guilt I feel for not making it those 94 MORE days.


I fight so no mother has to wonder what she did to hurt her baby.

I fight so no mother has to question whether support should be withheld.
I fight to get accommodations made so that Tyler can be a participant in EVERY activity!

I fight because Tyler can't.

He has his own battle to fight. He is a hero. He is fighting every day. He attends those therapies that we take him to, he listens day in and day out at the boring letters and words he hears trying to get him to speak. He fights everyday to put one foot in front of the other with out falling, all because those 94 days he came to early left him with Cerebral Palsy. Everyday he fights.

I fight to help others understand that we need accommodations made so he can enjoy life to the fullest. I fight to find ways to help his processing disorder be a happy place instead of a lonely one.

I fight because of EVERY MEDICAL ADVANCE and ever MODERN DAY MIRACLES we can't figure out a way to keep a women pregnant LONG enough to save these babies from disability and death.

We have put a man on the moon for Pete' sake. We have found water on the moon. We are transplanting organs into children and adults, yet we STILL can't find a way for a woman to give her child a FULL 40 weeks of pregnancy to SAVE HER CHILD from a life of disability.

I fight because I love a preemie.

I fight because he is mine. And he deserved nine months. And I keep fighting because he deserves the best.



I fight because I want my next child to have NINE MONTHS

I fight because I am raising a miracle.

I fight, so he doesn't have to!


We fight so THEY don't have to.



Please, support us in your blogging and face book status and twitter messages. Fight4preemie so they don't have to! We would especially like to see our family out there showing their support for the Miracle that happened in their life on Sept.21st and who every single day shows courage to be the best Tyler he can be!

FIGHT....... Because they can't

* this was a repost from my blog, I haven't been around much but have read. We have a few things coming up that I can't wait to share and hope to get some input from the lovely ladies we have on here! Thanks for reading, sorry if the photos are to big!*

Hey Girls. My HOLY COW post@

Communication is kind of a problem in this house. I think there are so many times that there are sometimes when the frustration of our lack of communication is so non existent that I can't help but feel some what sorry for myself. And it isn't me that can't communicate!

A glimpse into what I mean before I get to the holy cow part: Yesterday Tyler got up at the butt crack of dawn. Like 3 am. Not kidding. He was happy, mom um no! He had PT and OT yesterday as well which is a total throw of his schedule. He is not that set on schedules where he freaks. In fact I am not even sure he knew it was not the right day. What threw him off was the new contraptions he is to wear. He only had to have them on an hour. While getting on his shoes he was crying and crying and crying. His dad got him calm and the trip to PT was not as bad as I had anticipated. He was fine. He wouldn't let me leave him at PT which is abnormal but otherwise he was fine. He walked for Rachel and played his game for Jackie. He was allowed to take his shoes/braces off on the way home.

He played all day with Corine ( his respite lady) and we knew hew as exhausted. He fell asleep on our bed way late. We woke him up at 6 pm and bed time is at 8. He is a bear when he wakes up then compound his lack of verbal skills and you can only imagine the frustration he has. Dallas and I together couldn't figure out what he wanted. Finally we got him to sign SOMETHING. He wanted water, pool and something else. But he signs PULL not POOL. But it means the same thing to his ears.

So needless to say, communication is huge.

His speech is getting cut in Utah and he has been out of speech here for about a month. It was so hard to get use to the idea that he won't have it. He needs to talk. He needs the therapy.

While we were waiting to get our braces I thought I would go through the " Can you say this game?" We have been super working on just the basic sounds like Ba, Da, ta.. you know the stuff your 9 month old says.

He will say Ma or mom fine, and we FINALLY got him to say Ba. It was huge. We made a huge deal out of it. We let him be the praise junkie he is and then we moved on to something new. Those that know him know he won't say Da or dad at all unless it is by sign. Sign is fine. It is nice to see he KNOWS Dallas. But hearing it is way better.

SO, in the middle of a nasty circle K bathroom ( I really really had to go and Bret was still closed) he wanted to touch the floor. I said "ew no. Its Dirty! Can you say Da da Dirty?" SERIOUSLY we do this ALL day. When he wants something we say can you say "Fo fo food." I am sure people think we are NUTS. He looked at me and smiled and said Da. I gave him the praise junkie YAY and asked again. And again, and again. I finally called Dallas but he didn't answer and was super excited.

I was afraid he would pull a Tyler and NEVER say it again. But sure enough when we got home he said Da. When I would ask him to say Dad he would say Da and sign dad at the same time. It was making his dad BEAM from ear to ear.

So HOLY freaking cow! He has a new sound.

Signs and sounds he is currently making: A glorious LIST for YOU! ( the big words IE computer are all signs or approximations of signs)
Da
Ba
who ( like owl talk who who!)
T sound
S sound
Computer ( Dallas LOVES this one)
Dad
mom
Elephant
tiger
lion
monkey
pull
pool
water
all done
more
food
yummy( this one is just a sound he makes)

I think that is it for now. As you can see it is not extensive but it is a START and we love that he is progressing no matter what the speed!

* This was posted at my blog so you get a repeat*

BUT..... on a happy note. We are moving back to Utah. That's right ONE WEEK till we touch down in Utah county! Not sure how my hubby will do in Utah county but I am so excited. We have a new preschool that is just opening and hopefully we can get it all started and set up quickly!

Long time no blogging ( at least not here)

Hey ladies.... long time no blogging over here. Things have been super super crazy in this lovely household. If you want super nice in depth details head over to my blog. But otherwise here is our update.

Ty is doing super super good. For the first time in almost 4 years the stinker finally has an ear infection. That of course was after our "little" run in with the swine flu.

Yep you read it... We went on vacation to Utah and freaking got directly exposed to the swine flu for almost a whole week. The in laws had it. My hubbies sister was diagnosed with the swine flu while we were on our way home. Ty got hit with a super fast fever and the pukes the entire plane trip. I was flying alone so I was nervous as could be. But we had a fever for 2 days and then Dallas and I got the sickness.

We have been battling the flu/swine flu for about a week now. With everyone sick in our house we are not happy campers.

Our vacation to Utah was ... well.. I am glad it is over.

That was our current week. Right before we went on vacation we had botox follow up. Looks like we will be going for round 2 in July. His shunt seems to be stable for now. We all know how fast that can change. We were going to do summer school at the foundation for blind children but the above mentioned sickness has put us into just being home with mom. We just hired another respite lady. She is a grandma and we are hoping it works out better than the others we have had.

We are also ttc. We know that we will be on pretty close watch and hope that with the new respite people that if we need to do bed rest we will be all set.

That is the update from this tired mommy in Arizona. So glad to see all the good updates. You ladies rock.

Here is a few photos from vacation:



If you want to see more photos or see more of the update and more indepth and of course way more photos. Come on over to our regular blog.

Speech Woes

Speech is such an ugly word in this house. It has been mentioned many times how badly we want to communicate with our child. It has been a source of contention many times between me and others. Its hard to explain what happens.

Tyler signs many words and usually we (meaning me and his dad) can understand what he wants. We got him to finally sign dad after he USE to say it. He now will only sign it. We have a handful of other signs/gestures that we know mean certain things. Once we explain them to others they can understand him.

When we started school we thought that being around other kids would help with his speech problem. That it would encourage him to be more vocal. While we heard more sounds and a little bit of animal sounds no words came out of his mouth.

We increased his speech and did private and are still doing private therapy. I take him once a week for an hour. Because of his need for being around mom we have transitioned him to being with just his speech teacher.

In February when we got his shunt replaced I called to talk to his teachers and therapists at school wondering why no one noticed he acted off there. For the first time in six months we found out that he was not making any sounds or making any progress with his speech teacher at school.

This was when the speech teacher mentioned he was snotty and wouldn't participate. I kinda of laughed and said " He is three. What do you expect." But I got mad. I sent a notebook every day and rarely got back any kind of feedback. I assumed he was doing fine. Communication came only when I asked questions. So this information was new to me.

I immediately sat down and went through books, puzzles, toys, anything that generated some sort of response from Tyler. I wrote out a long letter explaining noises, sounds, gestures and anything that he did when looking at certain objects.

The first day after that I got a response from his teacher. She said "Wow, we had no idea he would be this verbal." I thought for six months you got nothing and it didn't dawn on you to come and talk to me or call. I would have come in and helped you.

I was furious. But that hasn't really increased our speaking. When we got a failed hearing test everyone ( meaning teachers and therapist at school) thought this was the answer to his speech problem. Me and his dad rolled our eyes thinking that this kid can hear just fine. And sure enough we were right. Nothing was wrong with his hearing. He had his ABR done and not one bit of hearing loss at all.

This is were I started hearing from people " oh that is how my kid was/is" or " have you tried this" or my favorite " I am sure he says more than you think." Um nope. He really doesn't. In fact he makes more noises and sounds for me than he does for any one else. Not kidding. None of those things are comforting when you are dealing with a almost 4 year old. At some point communication is crucial. Speaking is needed to get your point across and to eliminate some kind of frustration.

We have been working on getting the beginning syllables out of his mouth. His private speech lady is trying so hard to get ba ba and da da out. All day long we have done something with speech. Him touching our mouths. Him feeling our throats. Me repeating and repeating ba ba ba.

After his bath tonight a most glorious sound. Ba ba

Cheers and clapping and excitement came. He did it again and again. Looking for praise. Clapping and cheering continued.

This speech thing is exhausting. It is a lonely world. Not just for me. But I can't imagine the loneliness he is feeling not being able to express himself and have us understand.

Speech

Communication

One word

ENT = BOO!!

Ty had a follow up with the ENT yesterday. I am very glad we don't see him often cause it was HELL. The kid can't handle people touching his head so going into an ENT appointment when I know the hearing test is gonna happen is just ... well FUN!!

My hubby had to go this time as well so it was 2 birds with one stone. His hearing test didn't go so well. He wouldn't let them put those things in his ears. So of course he wouldn't let them talk to him with out the crying, gagging, coughing and wretching.

I took him out of the booth and his dad went in for his hearing test. Ty loved watching his dad do the test and sat there saying "Yeah" And pointing and smiling and knocking on the sound proof door.

I kept telling him we were gonna play tickle in his ear when Daddy was done. We went back in and tried again.

NOPE!

The ENT suggested that we put him under general to do an ABR and see if there is hearing loss in any of his ears. If there is fluid ( which he has NEVER had a ear infection ... knock on wood) then they will tube him and then see what we can see as far as hearing.

I was actually ok with it. I hate the idea of him going under anesthia again.

Today was the bad day. It was hard to think I "might" have to add something else to the mix. It isn't like it wouldn't have been NEW.

It sucks that there can't be just ONE thing that is easy...

On the up side. I got these to photos today...



It will be ok.... It will be ok......

The bus... and other fun stuff

Ty if finally liking school. He has been happy as a clam and hates to get off the bus. We are looking at sending him to the foundation for blind children next year for preschool and at least looking into the summer program there for him.

This is the park by our house. He is doing so well. I can't wait to get his new braces on his feet to get it working better. I know it will be a fight.

We were outside playing before the bus came. ( yes I take my camera) and I asked him if he could hear the bus. He turned around and did that with his ear. He was so funny.

Thank you ladies for the wonderful support system. Things are going well for us right now. I am looking for some summer programs for him. I was also wondering if others have any in depth speech programs. Where do you get more information on dysphagia? I am wondering if we have something else going on.

Thanks again ladies... love ya... and love your kids

Thanks for the prayers

Ty is OK. Its nice to have him back. He is having a burst of more babbling and today signed sleep and asked for his blanket. ( Pointed) He then pointed to the store we were at and signed food. I was so excited. I KNEW he was getting it.... DARN HEAD!!!

A vent... By me

I love my son. He is my off spring and there are so many times I can't imagine life without him. BUT.... Today is NOT one of them. I am so irritated by his non verbal grunting. He KNOWS what he wants and I guess by some miraculous means he thinks that grunting and temper tantrum throwing , oh and not to mention that arm pinching thing he does is gonna help him get it. (luckily the head banging thing has not been happening)

SERIOUSLY Its not. I try to be patient. I try to be loving and caring but all I can think about is my bed and headphones.

This morning my incredibly pleasant spawn woke up at 4 am.. Thanks right 4 am. Do you know what is up at 4 am. NOTHING. I tried the whole sleep with mommy thing. Look Tyler the sun is still asleep direction and NOTHING. He kept signing all done.

Put in a movie. Go potty, get a carnation for him and put up the gate to the bathroom. Try sleeping for a few more minutes and nothing.

Finally, had DH sleep/watch him ( he can sleep though a lot) and I head to another room. Only to be awoke at 7 so that Ty wasn't "alone" for to long. I go in to put on Jammie pants and find the toilet OVERFLOWING with Toilet paper. He had knocked over the gate and put and ENTIRE ROLL in the toilet. Taken everything off the bookcase ( a daily occurrence) and pulled EVERYTHING off the dresser.

He ate a good big bites of food for breakfast. And then decided hew as all done and to throw a fit when I tried to change him. Then to scream and throw a fit as I went about the morning doing laundry and picking up.

I got ready for Sunday ( my mom wasn't kidding when she said hell broke lose on Sunday Morning) only to have him throw yet 2 more temper tantrums about the movies HE chose to watch.

He finally fell asleep on the floor and I ran some errands ( missing church of course because who wants to go when they just survived a handful of tantrums) only to have him wake up and whine, whine, whine even when I am sitting on the floor playing with him.

Oh and he threw all 56 letters in his magnet alphabet set, spit out his drink on the floor, threw his balls out of his ball pit and all the while managed to make a mess in the kitchen.

Did I mention if he wasn't cute I would be HURTING something right now?


Oh and if anyone asks if I would change anything, I don't think I can honestly answer I would. I would change him. I would make things easier for him. I would make him "normal."

I am a bad mom

Taking the moment

Last night as we were doing the hustle and bustle of night time routines and night time work, I almost missed the moment.

You know, the moments where you sit back and smile and think "wow, he is mine."

The week has been a tantrum of a week. We have been asked to start trying to send him into PT and OT alone. It has taken the entire session to get him to stop crying. We did it with Speech today and he cried for a while as well. It is tiring. It is exhausting and it is emotionally sometimes more than I can take and wonder how much more I can handle. All I want is to have a conversation, a simple one. All I want is to talk to my son.

Where is my magic wand?

On nights like last night I wonder how I got to be so lucky. He lays there in his big boy bed all sweet, quiet and an angel. It takes my breathe away.

Miracles Happen!

Hello World!

I am new here an wanted to introduce myself.

My Name is Nancy. I am a stay at home mom that works part time. I work in the evenings so that all our "issues" are dealt with in the day and we get all the benefits of working and the SAHM part.

My son is Tyler. He is a 25 week preemie. He was born in 2005 and came home with us on December 23rd 2005. One day before his due date.

His entrance into the world brought us into a world we only heard existed. It has been a roller coaster that we have endured as well as we can. We have enjoyed most of the journey. There are still things we are learning to deal with and as they come we just change our course.

Tyler was diagnosed with grade 3 and 4 IVH ( inter ventricular hemorrhage) at a few days old. It has since brought with it a myriad of events that has lead us to today. He developed hydrocephalus and craniosynostosis. He has ROP ( retinopathy of prematurity) that has left him with low vision. And just recently we have received a diagnosis for Cerebral Palsy.

Tyler is now three and we have entered the school age world of preemies. We are so proud of where we have come from and where we are going. Tyler is not the baby on paper and we are always so amazed at what he has accomplished.

I can't wait to continue reading and writing.