September is almost over and I have pretty much not done anything to promote or inform anyone about hydrocephalus other than the first post. I have a million blogs floating around in my head AND have started 9. I have finished none.

So the reality is, I am tired. I am tired of a lot of things. Some stuff have happened in my “private” life that has made it so that I am tired of people peeping into things and then saying stuff to others regarding a life they choose not to be a part of. So I focused on my little family and my ability to be their mom.

We have been establishing a routine here with Ty at school. We have been dealing with Tyler stuff. Stuff that people may think is not something to worry about, but the reality is, it is HARD. We are coming into a time where in our Faith, we are having to figure out if Tyler is accountable or not. Meaning, does he know the difference between right and wrong AND to understand the consequences and the ability to take on covenants. Or is he one of those small percents that is not in the category to be baptized. Because it was coming up on a VERY emotional time, I just kinda checked myself out of being judged.

An example of a Tyler-ism and does he get it. After a VERY long morning with everyone, the parents were upstairs in the house with Grayson. I was drying my hair. D came inside and asked if I had been downstairs. I said yes, earlier to check on Ty and his breakfast. Turns out, in the time I left and D came back in, Tyler had gone over to the water cooler and DRAINED IT on the floor. He hasn’t touched it in over a year. But that day he drained it. As I wiped up the floor we had him help, sat him in Time out and when we talked to him about what was the problem he couldn’t tell us why we were upset or mad or what he had done wrong.  To top it off... we are STILL not potty trained and it seems like a HUGE chunk of sadness realizing that I JUST might be doing this for a lot longer than I had thought. Like MY whole life.

Another Tyler-ism. Tonight while we were cleaning up after Dinner Ty was riding his scooter in the house. ( Mind you, my kitchen is HUGE and fits and entire sitting room in it. ) It is also all tile so it is the perfect mini race track for him. Grayson LOVES to play with him. He was being “chased” by Tyler and when Grayson decided to be done he left the game. Ty decided it was a GOOD IDEA to run him over. So, there goes Grays head first onto the tile. They are both super tired, we start baths. Tyler gets mad at Grayson in the tub and pushes him and holds him under the water while I am doing meds. Yep, the sweet Ty tried to drown my child. I was FURIOUS. You can’t just be ok with that. But what do you do. There is nothing that I can do to MAKE him understand why it is wrong.

To top it off, I am sick. We had hoped that I would make it 2 years before experiencing the symptoms of endometriosis. Well, gee. What a crock. I am so sick that I can’t feel my leg. It is so bad. When I went in to beg for a hysterectomy, I got told I wasn’t old enough. How can I not be old enough. 15 year old children ( and younger) can have children. I can’t get pregnant without massive loads of drugs, shots and the works.I can’t stay pregnant without all the help in the modern medicine world and I can’t decide if I want to feel my leg or not. So I get to do a month of waiting, crying and hoping my leg doesn’t fall off.

On top of the above, infertility raised it’s ugly head along with some emotions I forget where there. So while I am so happy for some, I am so sad for myself. Add that to the emotions of life, Cerebral Palsy, (judge mental people who I KNOW read this thing... HI to you stalkers out there) school, baclofen, hydrocephalus, anxiety, depression and people who can’t take their own responsibility, I am SOOOO tired.

Coming up. Ty’s birthday. Tomorrow we are going to the Phoenix children’s museum and in October we are going to Utah. Weather is cooler here and we are getting into our routine.


 We can do hard things.

There is no witty tittle

I don't even have a witty tittle for this blog post. Nothing. It isn't even writers block because I have so much to say that I don't even know where to start. My mom would be angry if I said everything that is going on in my head because I am a little angry. No... A lot angry. So instead, I will be nice and say only a few things.

I have really struggled the last 3 years. We were dealing with infertility. I was struggling with who I was as a wife and mother. I had had a job for the last 2 years and found myself back to being a stay at home mom. While that is my most favorite and absolute best place for me to be it really caused me to have an identity crisis.  I have always felt I knew who I was, and felt at peace with whatever I was doing.

After I had Tyler life was hard. It wasn't just his issues that were hard. About a year after we had him we moved and soon after I had a job. I had that job for 2 years. Some parts of that job were fine others were not. Fast forward to moving to Utah. We struggled. We felt we had made the wrong choice, we REALLY struggled with infertility and I watched 3 pregnancies, 2 babies and an adoption plus countless other friends have babies. But I was not one of them.

After getting pregnant with Grayson I was ecstatic. I was so excited, scared, nervous and all the other emotions you can think of. I was like a first time mom all over again. Literally. But it also threw me for a loop. For 6 years it had been just Tyler. Tyler and his therapy, Tyler and his doctors, Tyler this and Tyler that. Especially for the last 3 years here in Utah. It has been all about getting Tyler just what Tyler needed. It also meant the even better stuff, the just Tyler at the park, going to Grandma's, shopping at the store, running here and running there.

Since July, everything changed. Not only was there a whirl wind of activity here in the house, we were adjusting to life with a baby. Everything was crazy. One of the things I wanted to do was nurse. So I did. Some how, after pumping for hours with Tyler and not having enough to feed him I am able to nurse with no issues. However, it has made my life 100 percent someone else's. I co sleep to have sanity and some sleep. I nurse through out most of the night. I have literally raised a child ( for 7 months) who cannot be without his mom. If he isn't able to touch me he is literally screaming, even with his father.
Add that to therapy starting 2 weeks after Grayson came because Tyler needed it. At least once a week we go to therapy 15 minutes away.

This in no way means I hate being a mom. I don't. In fact, I love being a mom. But I am a person to. With needs, likes, dislikes and sanity. I like knowing who I am and having an identity. Right now, and until at least July I am just "The mom" and I am ok with that.

After Thanksgiving things changed a little. But after Tyler had his seizure EVERYTHING changed. My days changed, my nights changed and my whole world became some what of an unbearable dream. Everything was harder. Getting up in the morning was hard, going to bed at night was hard.

Everything changed.

Tyler developed some strange and hard to handle behaviors. Whatever quirks we had ( and knew we had) had some how and some reason become so amplified that no one could deal. He had anxiety so badly that he wouldn't leave his classroom to go to the other kindergarten. He would meltdown at school to the point where I would have to go and get him. He would freak at the sensory overload when we were in the car and Grayson would cry. He would literally melt.

We find out that his behaviors were from his medication and we tried everything we could to just deal. Then we got sick. Like since mid January we have been sick. Behaviors have gotten worse, school has gotten WAY worse. Ty has had to miss a lot of school. He hasn't been sleeping. Oh and did we all forget, I have an infant. YEP! One that doesn't nap at all unless being held by his mother. We are on a 2 hour schedule for nursing still because in reality I probably don't make enough milk to sustain him but he won't take anything else.  I have been in the sick category and lets face it. Enough is enough I am having some issues dealing with stuff. Like bad issues. Enough that putting pants on in the morning is limited to only pants with elastic waist bands or that can be found in the pajama isle or in clothes that look like I should be on the people of walmart. But I still have responsibilities.

We have changed meds for Tyler. Nothing I can do for Grayson. We have all been on antibiotics. We all started feeling better ( but D got it again this week) and I have gotten some other things squared away so I might be found part of the day in jeans.

But this afternoon.... a few things changed. Without going into details, my character is being questioned. I am very sad about it. I am not who is being portrayed. Those who know me best and even worse, know that I am not that way.



Tomorrow is a new day. Tomorrow I get to be the mom. A great job for me. I get to figure out how to put one foot in front of the other and do the best I can.

A quick one

I don't have a ton of time and I have not updated in forever.  Frankly, life has been insane since December and if we are honest since July.

This past week we have ALL been sick. That is right. ALL FOUR OF US! Ty was sick about 2 weeks ago and it seemed to pass fast. We thought sweet, no more germs. Boy was I wrong, very wrong. It seemed Dallas got it and within a few days I had it. Grays was pretty good but boy that didn't last long. I was put on antibiotics, Dallas was put on antibiotics and the boys are not because it is just a cold. IN the last 2 days Grays has gotten worse and Tyler not any better. We are all exhausted beyond belief.

With the sickness, Grays has only wanted mom and Dallas has only wanted his wife. I only want sleep. Ty is a different story.

Tyler is not sleeping ( SHOCKER!) He is up around 2 AM or 3 on a good day. We have had him sleep in past 6am about two different times in 3 weeks. Finally we sent him back to bed last night and let him cry. I don't have any more room in my bed ( Grays co sleeps and is sick) and I am squished if Ty is in there to the point where we just can't do it. ( We had been till yesterday.)

He has temper tantrums that are more than anyone can handle in this house. His anxiety started before his seizure and has just increased since then. After his seizure his stuttering seemed to decrease and it does only seem to get worse when he is super tired. But the anxiety and the need for structure and routine has increased and the temper tantrums has increased SO much that we are looking for alternative things for his seizures and we are continuing with his Occupational Therapy to help with ways to get things under control.

At school he is doing well academically but his anxiety is showing in the classroom. If he doesn't know where and when they are going some place he has a melt down. If they stop and make a detour without him understanding ahead of time he has a really hard time. He has done this since his seizure.

Night times are unbearable right now. We are fighting over every little bite  that goes into his mouth. He fights bed times, he wakes up early. He is throwing himself on the floor, kicking, and crying. It is really taking it's toll.

We had a pediatrician appointment on Friday because he came home and just cried for an hour. We know he hadn't been feeling well. Frankly, no one had. I knew it was just a cold but we took him in. She gave us some suggestions we are going to look at. After that, we just pray it starts to get better.

On a plus side he is doing amazing at school academically. He still has his sweetness sometimes. He is still in love with "HIS" baby Grayson and gets super sad when he is crying. He was able to go to the wish house and make his wish ( more later... when we know more!!) and he is the recipient of a cool cool scooter. Now if we could just get him to feel better.

IEP 2010!

Tyler's IEP ( Individualized Education Plan) recently expired so I had the chance to sit down with his education team and come up with new goals and things to work on for the upcoming school year.

Last year Ty was really new to the school and we didn't know how he would do in a classroom setting like the one we had him in. In Arizona, Tyler was in a class where there were only 3 other kids. 2 were a lot more severe but had physical challenges. He was not in a "almost typical" class there when we moved.

In Utah he was back in a typical ( as typical as Special needs preschools can be) and he was not doing as well last year as he was this year. So the goals were made and he did really well. This year, his goals were made and I am excited to see how they will pan out.

To start the year Tyler has made leaps and bounds progression. When we left the school year there was no words. He was making some sounds but nothing that really resembled words. With a new speech person she is really wanting to push Tyler to make the leaps and bounds that she wants him to make. She wants him as close to kindergarten ready and she can get him.

Educational goals for Tyler are SMALL!! He is doing what he should be doing as far as cognitively as he works toward kindergarten. He is basically caught up. Including his ability to count by ten to 100!! So the goals that we have for him are all social. Getting him to play with others, initiating play, talking about what they are playing so that he can be more social with other people that he needs.

Other people involved in our IEP is a Physical therapist and an adaptive PE teacher. They are going to work on Ty's core strength. They are also wanting to get him in the habit of walking in a straighter line instead of a drunk straight walk.

The best and most exciting news is his vision. They want to teach him how to use a CCTV. It is a pretty cool device that is going to help him learn to read. By Christmas they would like him to be able to sight read 20 words. I totally and whole heatedly agree. I KNOW he can do it. He is a very smart kiddo.

The CCTV is small, lightweight and quite cool. I think my mom could use one. She is almost as blind as a bat!! The cost of the device is quite minimal so it is very cost effective for what it will do and he can use it for a while.

The OT and Vision people will coordinate some of their efforts and work on his writing skills and if writing isn't going to be an option then they will be teaching him how to type and utilities the abilities he does have and keeping him up with the rest of the kids his age.

I was pretty impressed and the only change I requested was that we don't automatically write off Summer school for next year. So in December we will be reassessing the goals to see if we can get him the socializing.

A big FAT zero

Ty goes to school Tuesday - Friday. Most of the kids are there for speech purposes only so because he gets like a million services he goes everyday. He gets one on one of everything and he gets double Physical Therapy by way of Adaptive PE and then the physical therapist.

An about me book was the subject for a week. They talked about families, friends and brothers and sisters. After looking at his home paper for a week I really was excited to see what the book was going to say. Plus this year he can talk, so the book might be a little more accurate.

When it came home we sat down to read it.

Then it hit me. It got to the page about his family. He had "drawn" a picture" of his brothers and sister.

The page was blank. In the VERY corner was a drawing from the teacher or aide.

Tyler has zero brothers. Tyler has zero sisters."

I was sad and a little tear ran down my cheek. That zero stung and burned.

Tyler looked at the page and said "Number zwero" "2 number zwero."

Luckily the bus came and he went out the door.

Zero! ZERO! ZERO!!

Its a number we are really familiar with. Its a number we have been working to change. But the word zero, feels about the same as the BFN on all the tests. It is one that leaves me in tears EVERY night when we pray. It is a reminder of my faults every morning when I log onto Facebook to see yet another "announcement."

Zero......

ZERO....

Tyler went to the CIRCUS

*Oh MY GOODNESS!! This will totally have picture overload so I tried to limit them but Grandma would be mad if I didn't include SOME.*

On Tyler's birthday we were offered 2 tickets to the circus. I told Tyler we were going to go to the circus and he was so excited. We were waiting to see if we could get an extra ticket and were worried that D wasn't going to be able to go with us. LATE the night before the Circus we were offered one more ticket. We were so excited to go.

The next morning I woke up throwing up and sick, sick, sick. I spent the whole morning throwing up and was REALLY not sure if I could make it. I was so sad and upset. Come afternoon I was feeling MUCH better and Tyler couldn't stop talking about the circus. When he got off the bus he asked for the circus, when he went to bed the night before he asked about the circus.

We had no idea where we were sitting but were told it was "handicapped accessible." Normally that means that it is pretty easy to get to but not at the ES arena. So we arrived in time for the pre-show which gave Tyler a chance to be out on the floor with some performers up close so he could see.

While we were there Tyler and Dallas stayed and I needed to run and see if we could get our seats changed. The handicapped seats were very far away and he wouldn't be able to see. When I went down to the problem ticket counter and asked if they could change our seats. At first they said no because the tickets were comp'd by the show and not purchased by anyone. I thanked them and left.

We got some yummy dinner food from the concessions ( blah.. ) and of course popcorn. Ty ate the WHOLE thing. We sat down and got a tap on our shoulder from the problem ticket dude who asked us to follow him.

He offered us seats in the 4th row. It was seriously amazing being that close to all of the performers. I was VERY impressed. What made it even better was Tyler and his expression as they did their thing.

The Ringmaster was very good, but very loud. He rarely stood still for longer than three seconds.

As the circus started Ty shoveled in the popcorn. I am not sure if he was nervous or what. He ate almost the whole container of popcorn. He was VERY good through the whole thing.

This is the lady that twirls on a really high rope by her hair! so incredibly NUTS.

The crazy motorcycle riders.

Ty decided to sit with Dallas through the last part of the show. I think he is excited a little bit.

I love the Elephants. They are such HUGE cute animals. There is something majestic about them and I really liked them. At the end of the circus they brought out the newest member of the crew and it was a baby elephant. Ty pointed and said " Baby Elephant and his mommy."

And the end of the show! It really was the best show on earth. Ty loved it and he was awake and aware of everything around him. It was a show of wonder, awe and most of all SEEING!

We have just recently noticed that his vision is something that really does impact so many things. Something small, like sitting close to the circus, means SO much.

Special thanks to those who gave us the tickets to go. At the cost of the seats that we needed it would have cost us well over 300 bucks. We had the best time and Ty still talks about his trip to the circus.

*Click on the pictures if you want them to be bigger.*

Four Walls

There are four walls. Four walls that create our home. Four walls that have created a safe haven and a place that is a shelter for the three of us. Not just in a physical sense but in an emotional one.

The four walls have given me a perspective of Tyler that I wouldn't change. ( The perspective I wouldn't change, but I would make things easier for him. ) In these four walls we don't notice that he is different. In fact the only time we notice is when we leave the four walls. />

When we go places people look and people stare. At first I didn't notice or didn't want to notice. Every once in awhile the people who were staring would whisper or say things. Sometimes it was just curious questions and they were innocent. Sometimes they would be cruel and point and stare.

I became aware of words. Words like Retard, short bus, and slow. All those words that mean hateful, mean things. Things that we all laughed about at one point or used so casually we didn't think of the others around us. With the delays and the life we live we now those words affect us.

As Tyler is getting older we know he will be moving into a world where he is very different from his peers. He doesn't walk with a normal gait, his eyes don't look or work like others, and his talking is far from up to par. He has different actions than most and he sometimes acts MUCH younger than is "ancient" almost 5 years.

But the one thing he isn't is dumb.

He is aware that he can't do the things that other people do. They are harder for him. He wants to join in all by himself but he can't. He wants to be able to hop on a bike and pedal up the street. He wants to be able to chase a ball in the yard and throw it up. He wants to be able to all of those things.

I don't expect anyone to bend over backwards to include Tyler because I know that isn't going to happen. What I do expect is that you teach your children. Everyone is different. Not one person is "normal" or "regular." Some are smart, some wear glasses, some have red hair and some eat with a tube. Just because they are different than them they aren't bad, strange, weird, stupid or any other term you want to use.

In the four walls of our home he has only known people who accept him and love him and play with him. That is ALL he knows. He only knows love. He doesn't know hate. He doesn't know that he can't do something. He only knows that when he wants to try something someone is there to help him. There are no mean words.

Only people who love him remember to include him. They invite him to do things. They visit him when he is sick, they want to watch him. They learn his words, they take his pictures and they otherwise KNOW Tyler.

I can't make the four walls any bigger. I have to hope that other people have taught in their four walls that its OK to be different.

Out of the WHOLE experience today it made my heart hurt that I was not able to shelter him from hearing those words. That I was not sheltered from hearing those words. It made me sad that when I send him out into the world that I have failed to keep him safe.

Surgery Time

After a long sleep battle with Tyler we went to a sleep doctor. We needed refills on his medicine and in order to get them we needed to see a doc that would prescribe them. The medicine we give him is kind of old school AND they are kind of strong. Most kids only get these when they are heading into surgery. Ty gets them every night.

The result of the test shows that Tyler has some sleep apnea. His oxygen stats drop into the low 80's and it made our doctor a little worried. Because kids with Cerebral palsy can have such strange muscle tone she felt that it was in his best interest to see an ENT.

Off we went to the ENT who suggested that they come out. Then a few weeks later we broke our nose and then a few days later we bumped it pretty bad. So surgery was scheduled. Last week it was rescheduled but the day has finally arrived.

Wednesday Tyler is scheduled to get his tonsils out. To make his life a little easier we are also doing phenol shots and casting the same time. Both docs are working together to help us not have to put Tyler under any more than we have to.

Up until Tuesday night and into the early morning I will be fine. It is when they take him away from me crying and saying momma that I just lose it.

We are lucky enough to have an early time in the OR so we don't have to fight him on the food and drink thing. We will have to fight him after.

Every time we plan to put him under or we do a surgery that isn't Emergency needed I worry that i have made the best choice for him. When he is DYING because his brain is swelling and his heart rate is dropping, I KNOW we need to do it NOW. But this half fills like it is just an elective surgery so I am a little more nervous.

So if you don't see us com up for air... leave us some words of wisdom....

IT IS BROKEN!

I am a little sad I don't have a decent picture but he won't hold still. No worries then! He MUST be fine.... RIGHT?

So the back story.. Every Sunday ( or as many Sundays as we can) we get to go to Grandma Browns house for Sunday dinner. It is one of the highlights of Tyler's week. ( I think) He has been doing SO good with eating and sitting and playing with his cousins Lilly and Noah.

At Grandma's there is a coffee table that is by the couches. I think she has secrectly been worrying about when one of the kiddos are gonna fall and hit their sweet face and not look so hot after.

SO in true Tyler fashion we have made grandma NOT worry and have fallen and hit our SWEET face. He was sitting on the couch and tried to get off, ( we don't remember if he was sitting on me or just the couch it all happened so fast) and he hit the table.

At first I thought it was his teeth, which was BAD cause they are capped teeth and well, that kids teeth are EXPENSIVE, then I thought oh no HIS NOSE!

As I instinctual bent down to grab my child I expected blood EVERYWHERE!

But nope. Barely a drop!

Grandma was sickened by the sound and was SO upset that she left and everyone else jumped into action. His nose barely bleed. Got him to stop crying and did the Neurology wait. You know, don't let them fall asleep, make sure they aren't groggy. The only one he REALLY failed was are his eyes moving! ( haha...)

We went outside to play and throw rocks, walked around and he settled right down and we noticed a little swelling on his nose but figured we would just watch it.

As we got him ready for bed I said I think his nose is crooked. But we thought we would wait and see what it looked like in the morning. This morning we had the really GOOD look. It was crooked and a lot swollen and a lot bruised.

We called the pediatrician office this morning. We talked to his nurse and she said that she really wants the doc to see him. Dr. Nagle thought that it would be best to check the nose and MAKE SURE and because he has other issues including sleep apnea that it would be smarter.

So we went to therapy and he did AMAZING and we are working on something HUGE with PT. So exciting something too!!

Our Doc's appointment was so fast. The nurses LOVE Tyler so he is always a big hit with them so we had them all come in and try and talk to him. Marissa ( our Doc) came in and she looked straight on and said " Oh his sweet nose" and we got him to hold still kinda and up she looked. She said yep!! It is broken and we don't even need to get ex rays because you can SEE that it is broken. The other side had scabs coming already and his nose started bleeding. She was so sad. He was just mad she kept trying to wipe his nose.

So ENT appointment on Friday at 1. Possible surgery needed to correct it. If NOT then we will wait and do that in June. If we can't wait then we will do the nose and see if they will do the tonsils we will do that with the nose. But we won't know much more till Friday.

Till then I promise to force pictures on my kid!!

Coffee table-1 Tylers face -0

Snowboob

Met Snowboob!

She is Tyler's newest friend.

As we were putting together "things" to make a snow man face We came up with random and some what original things and Tyler decided to tell us where they all go.

The mouth is a piece to connect 4 that is shaped like a smile. The nose, and eyes are heart shaped slinkies and the arms are heart straws.

The front is 2 pop beads Ty affectionately called BOOBS and stuck them right in!

The heart was taken from my valentine craft and set in perfect view .

And of course Barney does get in on the action.

TY WON!

I recently entered a contest for a BARNEY DVD. Only because Ty's best friend is Purple and Barney and it is one that WE DO NOT HAVE!!

Well we got an email yesterday with a shouting HOORAY! Ty and I won. Sprouts is giving us a copy of the movie lend a helping hand with Barney, Bob the Builder and Fifi and ROARY! I am sure Kipper will be thrown in there to!

Thanks to LOVE THAT MAX and them hosting such a fun contest!! And a Special shout out to MAX who LOVES purple to!

We will let you know how the movie is and how much we love it all ready.

Thanks again Ellen. LOVE IT!

The LAST eve of Prematurity Awareness

I have slacked the last half of the month because life with my baby ( that is a big boy) got hectic and nuts. Its all been a bit overwhelming and a little nuts!

His sleep study results came in the mail but we have a follow up on Thursday so I have lots of questions before we share the results. BUT mainly he drops pretty low on his oxygen and needs some requirements to keep them up. We don't know what it is yet but he wakes up about 5 times and hour from not breathing and wakes up 5-7 times and hour for his legs moving. His average sleep is about 6-7 hours.

We are still doing therapy at Shriner's and hope to be able to get Tyler on disability soon so that his insurance will cover someone a little closer or even as close as Riverton at the new hospital. I am hoping that the shots and the casting will work really well and we can relax a little and the therapy will help the kiddo out.

His speech is coming along really really well. He is doing most of the alphabet with sounds. There are still a few he hasn't figured out but he knows what they are and can match them. Its getting a little easier to communicate but we are still limited on his words. He can't seem to put them all together to form words. And some of the sounds are just sounds that he is imitating the SOUND but not how it is really said. ( that probably doesn't make sense. A example is the sound the F makes. He sounds like he is making snot and boogies.)

We are getting our second round of h1n1 this week ( hopefully) and have been battling a consistent battle of strep. Tyler has been surprisingly fine but Dallas keeps getting it. We don't know if Tyler is the carrier or me or Dallas for that mater but man I think we are done with it. His little sister who is staying with us came home with it today. But Tyler and I have seemed to be ok ( for now!)

I will have to post about Thanksgiving. I am still recouping my emotions from getting to see Max and Morgan and Barrett and Chantel and having them gone. We are gonna miss them.

Stay tuned for more Holiday fun and some awesome pictures from the weekend.

In knots

I am the worst nervous mommy when it comes to sickness. I drive Dallas insane but I can't help but feel total panic.

On Saturday Ty did the early 3 am wake up. I couldn't shake the idea that he was not feeling well but he acted fine and asked for food around 5. I went downstairs and got him food and Dallas came down to take over and sent me back to bed. I was so thankful. I had a photo session in Salt Lake so I wanted to feel rested and I had to work at 6:30 pm so rest was really appreciated. I wasn't feeling well. Nauseous. I chalked it up to nerves but it felt like morning sickness. I am not pregnant so I KNOW it was something else.

I headed to the photo session ( now feeling bad cause I am almost sure it is a bug) ate some crackers and was feeling tired but OK. I got home, Nicky was watching Ty and he had fallen asleep. She said he was acting fine. Ate a ton of toaster struddles and fell fast asleep.

He was not interested in lunch but I offered to take him to the park. At the park a small little fall threw him into tears. So we came home where he laid on the floor crying and whining. I felt so bad for him. And then I noticed the fever.

My dad and mom stopped by and Dallas and my dad gave him a blessing. I noticed some gagging and knew that we were gonna have throw up. Through out the evening I started throwing up to but wasn't sure if it was from nerves or from a bug. Ty had a pretty rough night. He had a fever through out the night. Acted much better off and on through out the day. However tonight we are back sick. He took some motrin with LOTS of coaxing and holding and some night meds which we hope will make him and mom feel better. I am not far behind!

So why the nervous mom-

We have a shunt. One that tends to break. One that has broken every six months. Shunts and stomach bugs have the same symptoms. How do you know what is what?

As Dallas and I have been frantically googling trying to ease our mind and we find OUR own blogs but nothing else that will put our mind at ease. NOTHING. I call the on call at our peds and she doesn't think it warrants a trip to PCMC right now. He only threw up once today and it was not " impressive" vomiting. Like massive HUGE amounts that are violent VIOLENT. So we wait.

The fact that I still worry about losing my child 4 years after the initial events of his rough start makes me mad. I hate how I still have thoughts of watching him get sicker and sicker. Feeling helpless as I watch him die. He is alive yet I still think of those times.

When he is sick both of us have anxiety. Both of us watch him closely. I hate how it all plays out. Every cry and whimper at night has me on edge, every time I can't hear him breathe I freak out. I have to know he is OK.

I can't bear to think of the alternative. No matter what I feel regarding any given situation he has changed my world. As sucky as the weeks are or the therapy after therapy he is mine. And thinking a shunt breaking puts him at risk makes me so sick.

I am in Knots and along with me not feeling well either, knots are not fun!

I know he will be fine whatever we need to do. But I still can't help but worry.

Kangaroo Care

One of the known benefits of prematurity and parenting is Kangaroo care. I am sad to say we didn't do enough of it! In fact, I don't think we did it more than just once and it was when one of the nurses was trying to get me to produce more milk.

Though we did hold him more than the average preemie ( that I have heard anyway) we didn't do much skin to skin. But kanagroo care is a very effective bonding technique AND has awesome medical benefits.

What it is? Kangaroo Care consists of placing a diaper clad premature baby in an upright position on a parent's bare chest - tummy to tummy, in between the breasts. Most studies have proven that Kangaroo Care has a major, positive impact on babies and their parents; some studies have proven there is no change; but no study has proven that Kangaroo Care has hurt either parent or baby.


What it does?

Decreases pain in preterm infants. There is some evidence that skin to skin contact or KMC lessens the pain response in full term and moderately preterm babies, but there are no studies on how very preterm babies may benefit.

Increases Lactation in mothers and helps baby regulate temperature : In 1990, Susan Ludington (Heart and Lung, 19 (5): 445-451) concluded that mothers showed thermal synchrony with their babies. A recent study placed babies in Kangaroo Care position on the mother's chest and temperatures were taken periodically of both the mother's chest and the baby. The study concluded that when the baby got cold, the mother's body temperature would increase to 'warm' the baby up. The reverse was also true. Given a suggestion of "Your baby looks warm to me" by a nurse, the mother's chest temperature would decrease within minutes to compensate. Extra blankets and monitoring of baby's temperature might be needed when Dad or others practice Kangaroo Care, but in 1997, Karl Bauer, et al (Journal of Pediatrics, 130 (2): 240-244) concluded that one hour of skin-to-skin contact (Kangaroo Care) was no cold stress to preterm infants.

In 1998, Papi A Gomez, et al (An Esp Pediatr 1998 Jun;48 (6): 631-633 - Spanish) found infants in Kangaroo Care for > 50 minutes were 8 times more likely to breast feed spontaneously. Kangaroo Care allows for easy access to the breast, and the skin-to-skin contact increases milk let-down. A receiving blanket, strategically placed to catch extra milk is extremely helpful - especially if the baby is unable to breast feed.

• Regulate his heart and breathing rates
• Gain weight
• Spend more time in deep sleep
• Spend more time being quiet and alert and less time crying
• Have a better chance of successful breastfeeding (kangaroo care can improve the mother's breast milk production)

As a mom who LOVED holding her sweet baby but didn't get a chance to do the above make sure you realize that you do what you can and Touch by itself is so good for your baby. They feel loved and know you are there.

Keep up the good work moms. You can do it.

for more Info go here and here

Because we are all REALLY trying our best

Despite the anger posts and frustrations over the past few weeks and months I have really tried today to find something that will help my insides. Whether or not we are trying to hurt each others feelings, looking for ways to be angry or even just taking whatever jabs we can with out meaning to or not we are all in it for one reason.

WE ALL REALLY THINK WE ARE DOING THE BEST WE CAN.
As mothers we have the ultimate guilt all the time. Did I do enough today? Did he watch to much Tv? Did I try to engage him in something good? Are they eating enough? Is he sick? Why did he throw up? And sometimes when the day is hard and the day is long and the day is full of disappointments and the mommy guilt is to much we get even more down on ourselves.

A phenomenon in the women world is how MEAN we are to each other. Honestly, Men don't do this to each other ( OK maybe a few do) but I never hear my husband say in Elders Quorum or on his blog or on twitter or a text that he was offended or hurt. (I don't know what it is about girls.)

Like I said in my other post I have really prayed hard to have the feelings go away. As I went about the morning I was so angry about something I had read. I really needed it to go away if I was going to be a mom today.

Elder Eyring's talk a month ago helped. Here are a few of the things I found.

I’m trying to be like Jesus; I’m following in his ways.
I’m trying to love as he did, in all that I do and say.
At times I am tempted to make a wrong choice,
But I try to listen as the still small voice whispers,
“Love one another as Jesus loves you.
Try to show kindness in all that you do.
Be gentle and loving in deed and in thought,
For these are the things Jesus taught.”²

"Just as Jesus used a child in His mortal ministry as an example for the people of the pure love they must and could have to be like Him, He has offered us the family as an example of an ideal setting in which we can learn how to love as He loves.

That is because the greatest joys and the greatest sorrows we experience are in family relationships. The joys come from putting the welfare of others above our own. That is what love is. And the sorrow comes primarily from selfishness, which is the absence of love."

The last statement of how the greatest joys and sorrows are felt in a family. That is so true. And I wish I didn't know that right now. I am ready to feel the joys.. Not the sorrows.

Whether people think of others as full of drama, that they are doing this to themselves or that we can find anger and something wrong in everything that is going on. The end result is EVERYONE .. every mother I know is really trying their best to do what they think is best for their child.

I know I am just trying my best. I am trying my best and like everyone else don't want to feel judged or attack.


He closes by saying "I hope you will go out today looking for opportunities to do as He did and to love as He loves. I can promise you the peace that you felt as a child will come to you often and it will linger with you. The promise is true that He made to His disciples: “Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you."

Shriners Hospital

I can't begin to describe my love for this place. I have mentioned it a million times but yet again it doesn't cease to amaze me. I am so thankful for Shriner's and the people that donate their time and money and give donations to serve children.

Today was our orthotic fitting and our speech evaluation. I was SOO proud of Tyler for being SO good. we talked about it before we got there and he was pretty good. The orthotic guy is NOT Brett but he took the time with us and did what he thought was best. Because we couldn't see any markings he was pretty sure that the kiddie gaits ( the 3K braces) are the cause of his sores on his ankles and not the SMO part of the shoe.

No adjustments were needed but he was impressed with his OTHER orthotic guy and the quality of the brace. Seriously I can't tell you enough how much we appreciate Brett, his time and Shriners for their amazing employees.

We then went upstairs for Ty's evaluation. We were early since they didn't have to do much for the braces. The upstairs of the "hospital" is a huge play room with luv sacs, TV's, a basketball hoops, balls, climb on toys and a few ride on toys. Ty was pretty OK with the wagon.

As we are going around the top floor of the play room we keep getting interrupted by the worker in the school. She was determined to get Tyler into the school room ( the room they have set up for the kids who are in for a long time.) and to give him a coloring book. Come to find out an anonymous donor donated 3000 boxes of crayons and a few thousand coloring books. She was so excited to give them to Tyler.

We then went over to the PT, OT room and waited for our speech lady. Ty loved playing all over the equipment and had a great time walking up and down the treadmill. He thought the was pretty cool walking to the mirror and waving at the other Tyler.

The speech lady rocked. I really liked her. Ty had a mini meltdown when we started and wouldn't let me talk to her. He wanted books and all of them. He was pretty good. But after awhile we found it would probably be better if I left for awhile. He didn't cry when I left but kept Blankie over his head for a while.

They have an observation room so I was able to watch him and was pretty proud of how well he did. The consensus is YES we need speech . We need it badly and Shriners will provide it free of charge. ( seriously there is waiting lists EVERYWHERE else and our insurance will only pay for 12 visits)

A few more things that she threw out there was a motor planning issue. Meaning the part of his brain that was damaged makes it so he understands everything he is being told but when it comes to expressing it and when he is looking for the right words or combination of words the slate is blank.

Another theory is that his muscles in his mouth are not right. A lot of kids with Cerebral Palsy have a speech issues because of this. They are gonna start working with some of his muscle issues and see how and what comes of it.

And another part of the puzzle is apraxia. Though true apraxia you cannot have any other medical issues ( meaning that if you have anything else wrong with you... even asthma or a medical condition or developmentally delayed) it cannot be considered TRUE apraxia be part of the problem. Apraxia kids can't seem to get the words to connect. So they may say "ba" but can't put the "nana" with it. Or they will omit certain sounds. For the last month we have really worked on getting ANY sound out of Tyler. We have tried just the sound of the letter. Our house and our play is getting kinda funny. It seem to be working and sounds are coming. But apparently not the right ones. We need Vowel sounds. If we can get the top 5 vowel sounds we are looking at a promising but LONG LONG road to get words.

They will be helping us with a communication device to see if we can't get the brain holding more vocabulary on the hopes that at some point he will make it come out.

We will be getting speech once a week there and 2 times a week at school. Then we have homework from private speech to get more sounds out. We are really hoping that we can get some more communication out of Tyler. At this point I am not sure how fully frustrated he is with his communication as much as I ( and his dad) are. there are so many things we want to hear that i think we took for granted '"thinking" we would hear as he got older.

We are happy with Tyler and how well he is doing. We knew it would be a long haul and I wish we knew earlier just what that little hole ( OK... its not really little) was going to do for his growth and development. How I wish I could take away the hard.

Do you feel like you are going crazy!?

Have you ever felt super super overwhelmed and emotionally a disaster and crazy!? Yeah that would be me right now.

Ty has been such a *hard* kid the last few days. I don't know how else to put it without others thinking I am complaining or ungrateful in some way. I am very thankful for him and LOVE being a mom but COME ON! Does he really have to whine and cry ALL day. Does he really have to throw temper tantrums and have total meltdowns for no reason. OK there are reasons but it stems back to something I cannot and he cannot control.

Tuesday was probably the worst day in six months. So many things were going on that there was so much stress that he was feeding off of. There was a major meltdown when I picked the wrong thing for lunch. Yeah no kidding! You would have thought I was hurting my child. It was BAD. It continued for most of the afternoon. I pretty much lost it the rest of the evening and my night only got better. *sarcasm noted *

Wednesday Dallas was nice enough to let me sleep in knowing how horrible the night before was. He got Ty off on the bus and I was able to sleep in. It helped tremendously but the whining and crying and tantrums were BACK.

Tonight we had way less whining and crying but we had to finish some birthday shopping and had some really lovely meltdowns especially when trying to get him to decide if I really wanted to spend the money to get him something that I thought he would like. it was bad. But the night ended pretty good.

Tomorrow he has school and we have not much planned. I forget how hard having a child with some "issues" wears on your emotional state. It makes you feel alone and very very lonely. Add that on top of misunderstanding after misunderstanding from those around you and your emotional state is in shambles.

Good deal did break on Speech.... Hopefully we will have a good news post soon. Bad news on his new braces, though he has been wearing them and doing awesome they are leaving some pressure sores on his little feet. So we have to take a break to see if we can get rid of them AND get an appointment at Shriner's.

Life....... it is crazy sometimes.

Our Sunday Afternoon

Today just plain out sucked. I half wished we could have a do over but since Time travel is not real I will have to deal with MOVE ON Travel.

This morning my sweet little boy woke around 5 am where he graciously came in to sleep with mom. We have it down now. I move my pillow over and Ty gets the middle, I turn my back on his so he won't stay awake and I PRAYER he goes back to sleep. It didn't happen but he nicely and very cutely gave me a BIG kiss after kicking my privates a dozen times with his spastic toes and me getting more and more angry with each muscle tormenting kick.

After the big kiss he signed food, and smacked another one on my! Gave in and took him downstairs. Made him french toast sticks and sat him on a towel to not lose the integrity of my carpet and because I was to asleep to make him "dip" at the table.

I was allowed to lay down for about half a hour before we got ready for church. Which was the same time that Dallas informed me his throat was on fire and he was not feeling well.

GREAT! Not to be the germ people at church but WE are not them. We stay home at signs of sickness. instead, I worked at picking you the house and hanging up clothes and doing laundry. The same stuff I do every day while also trying to keep Tyler entertained.

Finally right before noon Ty wants to go outside. Which I think THANK YOU LORD! He wants to do something. I wake up Dallas who has been asleep for awhile in hopes that by having him GET UP he will sleep tonight . So he went out and sat with us on the steps. I brought in a few boxes and came back out to find Ty and Dallas.... doing this......
, utah

Dallas took Ty off the cement to try out his grass legs and we got this :

The new stash of rocks is from our Neighbors yard and school. We were lacking in the rock department so I didn't think anyone would notice. So we stocked up!


Dallas went in to lay down after not feeling so hot and Tyler got more and more daring. He went and found himself a BIRD. It was a nice bird that liked to eat ROCKS.. It didn't make any sound and it almost got tipped over!
I
Ty and this bird were all talk and all serious!


And in the talk I am pretty sure Rock bird said he was Hungry!

We spent the rest of the day in an out and blowing bubbles and eating pizza and being chased by a vacuum. I would have liked the day of rest at the church but tomorrow is another day a new beginning.

Ty doesn't have school on Monday so we are thinking of doing a mom activity if anyone wants to join us. Something small like the park, or library story hour ( the kids library here has 2 hours tomorrow) or the pool in the afternoon. Maybe a trip to the farm at thanksgiving point or even cabellas and the fish or the aquarium. We have lots of Mondays to see how it will all go. Anyone game?

Orthotics For Tyler

Today was the first ALL day we have had with the new contraptions in our house. Yesterday Tyler was fitted for his orthotics. We have had a heck of a time getting into get his new braces and we have had a heck of a time fitting Tyler with orthotics. I am sad to say he hates them.

Our appointment was in Downtown Phoenix. It is weird to think that that was almost my LAST appointment to have to drive to. We got to Brets right on time and we waited pretty much no time at all. I got us set up with his DVD player just in time to get us back to our room. Bret was all ready with Bags and bags of these new and improved kiddie gait AFO/SMO's. I got them out for him to look at hoping to ward off the evil spirits of actually having to put them on. He looked at them joyfully and then put them down on the table and signed "All done."

* Technical/medical mumbo jumbo to follow*

AFO: Ankle Foot orthotic- it goes on the ankle and up the calf to support the leg.
SMO: supramalleolar orthotic- gives the medial and lateral support needed for calcaneal valgus, pronation, and supination with high or low tone. Or basically just encompasses the foot and ankle not the rest of the foot.
Kiddie Gait- Titanium AFO with no SMO. Ty has a separate SMO to wear with his AFO/kiddie gait.

I spent the day telling him about what we were doing. My tummy was in knots because I KNEW this was not going to be the most pleasant thing that he has to endure and that he would cry and be upset. I wasn't disappointed. He was upset. VERY upset.

When Bret comes in Ty starts telling him no. Ty doesn't exactly have a wide variety but No is in the limited one he does have. He waves but is still really really conscious of what is going on. I talk with Bret for a minute and we start the process.

We put on the SMO and the tears start and never stop. For the next hour Ty is subbing, gagging, temper tantruming and barfing. The bad part of him being upset is the muscle tone that he gets. He is TIGHT TIGHT and we can't barely move his feet. The stinker won't stop either.

The end of last school year ( when the ordeal to get these new braces started) I ordered some new balance shoes for him that were extra wide. They are HUGE on his poor little feet. But alas they still weren't wide enough but they were Velcro. We tried and tried but his foot and his contraptions just weren't going to fit.

Bret fitted them, and left to round down the edges and make them fit better and he came back with a pair of orthotic shoes. The new balance shoes were NOT cheap. Like 55 bucks I think. I know.. Who the heck pays that much for shoes for a 3 year old. NOT ME. I was pissed. But even better, guess how much the orthotic shoes are? Yeah... 99 bucks.. NOT KIDDING. For a KID!

Anyway, they are the only thing that is going to fit the braces so what do you do!

We get his shoes on and he is still gagging, and coughing and crying and now throwing a full on temper tantrum. We put him in a walker because these new braces literally cause him to not be able to move on his own so he needs assistance. ( I hate that the things that are suppose to help them hinder at first!) Here he starts throwing himself down on the ground. Hitting his back as he goes because he doesn't want to walk. He is FREAKING out by this point and I can't give in or he wins.

Poor Bret was so upset that he made him cry like that. I told him it wasn't his fault. He "mention" that Ty is so stubborn and so STRONG he felt bad he would only make things worse if he tried to help.

Ty and I walked down the hall to see if his foot placement was ok and he was screaming. Like full on screaming. I let him throw his temper tantrum when all of a sudden the banging started. As in HEAD BANGING against the floor. That made it so both Bret and I lost. The braces were coming off.

Braces came off and red spots were assessed and Ty was a happy camper.

Then came the good part.

Payment!

The braces cost somewhere around 3 grand. And the shoes are another 100 bucks. BUT we have been praying for a way to pay for them above just forking over the money. Bret and Barb have a hacked website so Dallas is going to be developing a website for them. In exchange we get the braces and the shoes for trade!

Today Ty wore his braces for therapy and he did an awesome job. He even got to play Wii Fit and LOVED it. He was happy to have them off though.

Watching him through this last week and going through the struggles of communication we have had tonight I am so glad we didn't rush into more children and not have the time he needs from me and Dallas. He is so sweet. But prematurity SUCKS! I hate it and it causes my sweet boy pain.

Posts to follow regarding our new milestone. It has left us all smiling for 2 days now!

I thought the roller coaster was over?

A phrase frequently used in the NICU was that it was a Roller coaster. Some days were HIGH HIGH and others low low. Some days were just OK and others were fine. You didn't have the drastic changes in emotions all the time. Some days were so "OK" that it was "no big deal." The closer we got to the end of our stay the "no big deal" days were more and more frequent.

Often during the crazy time I really wanted to get off the ride. Like at the amusement park, as you are heading up knowing that the drop is coming, the anticipation is a killer. What are you anticipating? Was it the drop? Was it knowing at some point that there would be a drop? I don't know. I don't know what makes the anxiety flow.

It has been almost 4 years into our journey. ( So crazy to think 4 years) And most days the journey is fine. It is " no big deal." But with all the changes coming up the roller coaster ride has taken a jolting turn. What am I anticipating? What is making me anxious? What if I want off?

Dallas is not working for a company so the safety net of a nice set of insurance benefits is running HIGH on our list of anxiety. Ty HAS to have insurance. A lapse in insurance could great impact us for the rest of our lives. Because of his Cerebral Palsy and hydrocephalus a lapse in Insurance could result in him being considered uninsurable. Those conditions alone make insurance companies run for the hills. But without insurance we would surely drowned in the expense of an unforeseen shunt revision and even the day to day care of a child with Cerebral palsy. His botox, speech, physical therapy and occupational therapy, most of which is out of pocket expenses as seeing insurance companies don't always agree that maintaining a functioning body is applicable to children with CP, are sure to cost way more than anyone is able to make even without working on their own.

The long term care system in Arizona, though very broken, is a FAR better cry than what we are looking at in Utah. Because we do have a job the idea that we DO have some sort of income crosses us out for medicaid. Because of that insurance has to be done privately or through a company that you work for. Again, causing a stressor. What do you do? We are even looking at me going to work for a few companies that I worked for before in order to get insurance benefits for the family. I am happy to do so. I am just overwhelmed with the idea that we will yet again be facing no long term care options. We have had it REALLY good in Arizona. A broken system gave us insurance, Therapy ( of all varieties) and respite providers. While the respite was nice I am fine with taking care of Tyler. It is the other necessities of insurance and therapy that plaque my thoughts.

Though I am sad to be leaving those behind my biggest concern is getting him into some sort of speech therapy. Speech is a HUGE concern for all of us. A lot of insurance companies won't provide services to anyone who is just delayed. There has to be a reason. Like a stroke, or brain injury. So unless someone is nice enough to put his speech delay is from a brain injury then we are just out. We have been pointed to a few free ( ok one) free service but there is a waiting list. This next week we are looking at Shriners and what the school offers.

Though we are leaving behind some of his therapies, we are gaining family. Since Ty doesn't have any siblings and with no plans in the works FOR one then cousins, aunts and grandparents, we hope, are going to help us with some interaction on a pretty regular basis. That he can learn how to model those that are doing the things we want him to be doing.

We are looking at what the deaf and blind school has to offer. Though the actual school is to far away for him to be bused I do feel that they might have some services that will be of benefit.

One of the major stressors that invoked this lovely downer topped with upper was a call from a speech therapist that treats kids with Apraxia. She was given Tyler's information and based on his most recent evaluation and what he is doing right now she was giving us a "guesstimate" of what we have to look forward to! She said that general speaking kids that are not talking by 5 can still talk but generally have unintelligible speech. Meaning no one but their care givers can understand them. Causing "normal" society functioning to not be very... um easy. There are a lot of communicating devices that we can try but given that we are moving the testing for it isn't going to be as available.

While we feel as his parents that he will talk and that getting him to family and friends is the best thing we can offer. If we do that and do what we feel is right for him that he will be blessed.

What is really hard is how much as a parent we desire him to be the best him and someone who is telling us he won't do certain things makes you a the deficit. For example: Dallas and Tyler were swimming in the pool. We are trying to get him to learn new words or sounds. It seems that his mouth tries to form it and nothing come out. Its heart breaking to NEVER hear dad, or I love you. Yet in his own way we KNOW he tells us that he loves us. He signs Dad. He signs and loves both of us so much. It still doesn't make that heartstrings hurt less.

"The best and most beautiful things in the world cannot be seen, nor touched ... but are felt in the heart." Helen Keller. She said it perfect. At this point we want him to be exposed to EVERYTHING. Take it all in. Adapt it to his needs and hope in his sweet, larger than life way he KNOWS we love him.


He KNOWS... He knows he is loved. And he IS loved.

I guess after a down day yesterday and a GREAT day today we won't know know what the future will bring and what services we get BUT we do know that in his Larger than life way we want him to be LOVED and feel loved.

So, for now we are coasting. For now the up and down is gone. We can do it! I will stay on the roller coaster ride.. If only for a while!