The Pool

When we were looking at houses to move into we thought we would want a pool AT our house. While I still think that would be awesome, I am glad we didn’t get one this time. The upkeep would be insane and very costly. But we have 2 kids who can’t swim. But we did want a community pool.

As we looked and found the house we wanted we were even more sold on the community pool. We were sold on the close little park that is covered too. We were also sold on our house and the street. We LOVED our neighbors, but they moved. Our street is lined with people from our church. It is a good place for us.

Our neighborhood pool didn’t get a visit from us until this summer. We didn’t go over when we first moved here because it was August and we were starting school but this year, we have made it. Once a week!

Here we are, enjoying the pool:

My red headed, fair skinned, curly haired  Boobie baby!

He will find a plane wherever he goes, or he will compromise. 

Ty is doing really well and enjoying the water. We burn our feet when we get out but we have a good time. This particular day we ordered pizza and met up with the pizza guy at the door. The boys devoured the food and Grayson took a nap. 

Summer is heating up fast around here. So middle of the day swim trips are slowing down. Next week we will be doing all 3 therapies, and having some testing done at PCH. But otherwise, stress and crazy schedules included, we will be busy. 

Baclofen

There are all kinds of different treatments that are used in people with CP. All CP kids are not created equal. So what will work for one might not work for the others. ( Like most chronic conditions) Ty had only done botox until we moved to Utah. Then we did phenol and it worked wonders. Bu it only works for a certain amount of time.

Phenol can only be done every six months. It is done under sedation and as it gets closer to the six months the effects of the medicine is gone and his muscle tone returns with a vengeance.

So what happens when it is gone? Imagine having a sore knee. It hurts so bad when you do certain activites. You stop doing them because of that pain. Then they fix it and you can go back to doing what you had done before. Then as time goes on that pain returns.

That is like Ty and his CP. It is always there but the shots help the pain and stiffness go away. Then as they start to wear off the pain comes back.

This makes him CRABBY. Like Super crabby. He falls more and things get WAY more tragic than they were a week ago. He hits his head more. He won't eat and the already way bad sleeping is even worse. He is up super early making the already tired kid even more crabby when it comes to falling.

After a week of non stop crabby pants we decided to make sure it wasn't his ears and went to the pediatricians and got a clean bill of health. She then suggested just MAYBE, JUST maybe it is his CP and that his muscles hurt at night.

Dallas and I had talked about it and Dallas had suggested that maybe he was more frustrated by his muscles and his inability to move easily so we went with both suggestions and called his CP doc. She called in a script for Bacolofen.

I have been weary to try it but thought heck, it can't hurt right? And hurt it DID NOT! It was hard getting a pill down him the first night. He cried and I had to force it down. The next try we just put it in the straw of his drink and it was fine. Last night I tried a bite of Ice cream and it worked like a charm.

Not only did he sleep great but he slept in his own bed.

He slept through the night.

I checked on him a LOT. I hadn't heard a word and was a little nervous. But he did sleep in his own bed.

Day 4 and he has slept AMAZING. I think we might just have to keep it up.

The crippled toes

I LOVE baby feet.

I love MY babies feet. I love them!

I have 2 of them in my living room. I love touching them and kissing them.

I love seeing who's toes they look like.

Are they his dads toes?

His moms toes?

Do they genetically have that toe clenching my mom and her sisters do?

As amazing as his toes are they are deformed. It is something that has happened in the last few years. They weren't like that to start.

As we have been growing and changing and our muscles have gotten tighter his toes have curved more. His last shots fixed it a little but as the shots have worn off we have seen more curving of his toes. His Sweet toes!

I often wondered how I would feel as he "looked" more disabled.

What do I feel?

I feel lucky.

I feel lucky that is isn't worse. That his toes are just toes. I wish they weren't "deformed" and I hope that they are not deformed bad enough to have to be surgically fixed.

I feel lucky that those are my Toes to love and to kiss!

Are you REALLY in charge of YOUR health Care?

We see A LOT of doctors for Tyler. The course of action for a child with cerebral palsy really doesn't vary by TOO much. Meaning there are only a few things that you do as treatments.

Treatments depend on the Type of cerebral palsy that you have or are treating so the ones I know about is Spastic diplegia. Which is the type that Tyler has.

Most spastic kids are treated with Botox and then escalate to other things. We have gotten phenol and at some point we will need the next step.

Last time we were in the Physical Rehab docs office she said that they would like to do botox in a few spot on Ty's arms and phenol in his legs. She said " I need to go see what your insurance company will cover before we make a treatment plan."

RED FLAG: If our insurance doesn't cover botox ( which they require an appeal) then we can't treat him with that because our insurance won't cover it.

Even if it is the course of treatment he needs if the insurance decides they don't want to cover it the they don't. That means I am not in control of his health care.

Today, I had my own "insurance" issue.

I was taking the depo lupron shot and the pharmacy that provided it to my docs called last week and was setting up my next dose.

We went in today for that dose. And they were ready to give it to us. Instead we opted to be in control of our health care and between Dallas, our doc and Me we opted to not take he second shot.

When we got home, we got a call from the pharmacy and they said that they weren't going to be sending the second shot because we have a balance on the first shot. I explained that we have the rebate from the makers and it is a 85 dollar rebate leaving the bill 15. They wouldn't send my second shot for 15 dollars. How are they in control of me getting that shot. Is it NOT me and my doctor and MY body?

I was medically in menopause. They needed to keep me that way for another 3 months but if I can't afford it then I guess my body goes back to being sick. Incredibly sick.

It seems that the insurance company and the people who are determining our health care. Even if we are needing that service or not. We seem to just not be able to get it because we can't afford it. So should Tyler NOT be given botox because our insurance doesn't think it is a good idea but his Doctor does?

How are you in control when they are determining what they cover?

PS. according to the pharmacy that provides the shots to my doctor, the shot he had ready and drawn up for me "must have been a sample" and they have no idea where he got something to give me. Which means that the shot was 7 grand and no one knew where it came from. HMMMMM

seems a little odd?

*did you read that.... we didn't get #2 shot*

And another

The use of the "R" word does hurt and it stings just a little. ( No it STINGS a lot) Though you may not think of Tyler has "retarded" please try and change the use of the word. Politically correct or not it makes us look less educated when we can't even think of a better word AND when we are using that word we are hurting people who generally can't speak up for themselves.

End the use of the R word and turn it to respect!

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.

Happy Birthday... Just kidding - Actually shriners CP clinic

Shriner's clinic was today. I have not ever been through the whole CP clinic meaning we see EVERYONE and their dog. But it was nice to get some good information and see Tyler's team of docs working, whispering, comparing and the ultimately turning to me and saying OK mom... give us your thoughts.

We have had a soft diagnosis for Cerebral Palsy for a few years now. Obviously he has cerebral palsy but we have not really had anyone talk to us about it. There are a million different " kinds" ( OK not really a million but more than one) and sometimes the more you know of the kind you have the better you can control, maintain and rehabilitate. Because we were not born in Arizona we didn't have the follow up program there with a developmental pediatrician and a few other docs that seemed to diagnosis a little earlier than we got. And being that we were born in Utah we were no longer eligible for neonatal follow up.

While I don't think a earlier diagnosis would have mattered getting information NOW and finding more and more things to benefit Tyler is what we need to do. At our appointment I had 3 docs at my disposal to ask as many questions as I could think of right then.

At the Clinic we see a orthopedic doc. We saw a resident first and he came in and nicely tried to get Tyler to coperate. He was looking to see just what muscles in his calfs and hamstrings are misfiring and if there is anything we can do or need to do soon on his orthopedic problem on his feet and toes.

It seems that Ty has more of a problem in his Gastroc muscles in his legs. Once pressure is relieeved his movement is less impaired. Of course taking away that muscle is not possible we need to find ways to lessen the spasticity of it. We have been doing that with Botox and with Therapy and stretching at home.

Orthopedics are looking at just having him wear his SMO's for awhile and not the AFO part of his braces in hopes of keeping him mobile and not impairing his mobility.

As a finally suggestion orthopedics is looking at doing a gait study to see what input we can get from his muscles and movement to better improve his gait. This won't happen for a few more months as they want to see if he can "age" a little more cognitively so he will follow directions a little better along with not getting so upset when they touch him.

Our rehab doc came in with orthopedics and we talked with her a little bit. Dr. Gooch is a little cold at first but she came in and I was able to talk to her a little bit and she provided a great deal of insight into Tyler and cerebral palsy in general ( at lest HIS type)

So Ty is considered having Spastic Diplegia Cerebral palsy. It is most commonly found in babies with PVL or brain damage caused at birth ( right before birth, or from a oxygen deprivation at some point in the birthing process) Ty has PVL and we have known about it since he was in the NICU. Some neonatologist refer to it at "cystic changes" in the brain. They showed up with his brain ultrasounds after his grade 3 and 4 IVH "resolved." It is usually a precursor to Cerebral palsy. Also this type of damage, Tyler is at risk for seizures. If he can make it to age 5 without one we are looking at a relatively LARGE breathe of fresh air.

Dr. Gooch is impressed with his Botox but they are noticing that at the end of his cycle he is pretty tight. Between her and ortho they would like a few sessions of physical therapy, possible round of botox and in December we are looking at being admitted to Shriner's and Phenyl injections in his gastroc muscles. Last year they were looking at doing a phenyl block but decided to do botox instead. This time they want it in his leg muscles ( which makes me much happier) and we are hoping it works better.

They decided to invite in Dr. Samson Fang. While I know lots that love her she kinda rubbed me the wrong way. I kind of felt like I was being talked down to yet I already had all the therapies set up, the docs we see etc. So all the info that she offered was already done. Minus she did offer to give me the name of a social worker for medicaid D.

Dr. Gooch and Dr. Carol got us on the therapy list up at Shriner's, so although it is a trek to get there it does give us PT, OT and Speech. That makes me feel just a little bit better. If we do get medicaid D we can get some of that therapy a little closer to home.

We were able to get an appointment with Orthotics and our evaluations are all set up.

I am so thankful for Shriner's and for those that donate to the wonderful hospitals and care they give. Not many places are free and that the medical care is above and beyond anything we have ever experienced. What great people there.

It was a great consult. I didn't leave upset, angry or frustrated. I felt I was talked to, informed and most of all that they cared about Tyler and his care.

A new school

Tomorrow is the day! Tomorrow we go look and enroll Tyler in his new school. He did so well at Primary and when we asked him if he liked it he actually said a REAL word. Today when I asked him if he wanted to go to school he said NO!

I am a little nervous to send him but at the same time I am so ready to send him to school. I think both of us need the break. He needs the time with other kids and I need the non mom whining.

Here is to the hopes of a good day!

Back to School- Meet the teacher!

Ty is now entering his 2nd year of school. Not second GRADE but preschool part 2! We have one more year but this year we made some changes.

First change: New Teacher. While his teacher last year was very good. She was even better with the older of the preschoolers. Ty was put in a class with 3-6 year olds. While he held his own, he was not doing the best he could be doing. We made some hard choices and put him in a different class. This year he is going to be in the Discovery Preschool.

Pros:

Less kids. His current class as 4 kids and an aide. Ty is able to walk in the class room and will attend a few activities with the other 4 year old class as he gets going.

Great teacher. Miss Janet is really good and she is currently VERY aware of Ty's...hmmmm STUBBORNNESS. Yes that is right. They have discovered that MY son is Stubborn. He must get that from his dad!

Speech will be with him for one full class period. Well not JUST him but the whole 4 kiddos in the class. Last year he was taken out of class and had 9 kids in the whole class. Not a lot of one on one that will hopefully get him going.

So far the only CON I see is time. Its EARLY. His bus picks him up at 7 am.... yeah.. 7.

So for the first day of school we have to be up bright and early, feed, clothed and on a BIG YELLOW BUS around 7. Lots of prayers that MOM can hold up!

My faith and Germs. Yes they go together.

Something happened tonight that really struck a cord with me. Along with some "innocent" comments from some unnamed people I thought I would take a few minutes to address something. Not to take way from our HOORAY on the post before ( so scroll down and jump up and down) and then get settled. It might take awhile.

So, to start I just wanted to share a little bit of what I believe and then a little lesson in GERMS. Like I said it is going to be a little lengthy. ( Germs first!)

Growing up I can only vividly remember missing church MAYBE 5 times. Most of the time that church was missed by anyone in our family it was because we were sick. Like the sick person would stay home and the rest of us would go to church. While at the time I didn't think a thing of this I do now. In fact I think a great deal about it. And as I think about it I get kinda mad. And a little bit on the paranoid side.

If one of us was sick that meant that EVERY SINGLE ONE OF US were sick. We were carrying a germ. At the time of growing up I didn't think about it because it wasn't a common occurrence and our ward at home was not that big.

Fast forward to 2005. In September you will recall the birth of a one pound baby. (If you don't read the freaking archives or the October Salt Lake Tribune, or click on a "tag" on my blog labeled MICRO PREEMIE... or better yet google it) (Like I said... I am a little ticked.) Anyway, while in the NICU our favorite Neonatologist cautioned us on germs and how things are spread and strict instructions were given on what is the WORST place to get germs. Church was the NUMBER ONE ON THE LIST. Why you ask? Because of the above for mentioned actions of Yours truly. Because one of them go to church carrying the germs that I would then pick up and take with me in to the NICU.

Fast forward 93 days in 2005 ( give or take) and we get a 5 pound newborn home and guess where they say we are NOT allowed to go. That's Right CHURCH. We wanted to have him blessed. We opted to do it at Church. Tyler came in after Sacrament had started and he left before it was over to avoid all the germs. We talked with our Bishop at the time and they brought the sacrament to us. The Relief Society sent one person a week to check on us and the Bishop stopped by. Making sure we were OK and that everything was going OK. That ward understood why it was important for us to NOT be there and to understand that we had and still do have faith and a belief in our religion.

Fast forward to 2009. That's right. While I no longer freak at every possibility of getting germs when an out break of something happens we tend to shrink away from heading into Church. Also keep in mind that we are not talking about a Utah ward of 200 or so people our ward is currently 800 people. That's right 800 people. If even HALF of them have been exposed to the flu we are talking 400 people who are sick. Its not a pretty idea for me. I get Anxiety even thinking about it.

My lesson to you...... If you have been around sick people or cared for a sick child keep your entire family home from church. They are sick. There are people who would LIKE to go to church and enjoy sitting in Relief Society without hearing, " My husband is home with our 3 sick kids so I could come to church" REALLY... Come on. I am no sitting next to you, where I will then bend over and pick up my kid and have the GERMS you brought to church go to him.

And just for your FYI and reading pleasure: KIDS WHO ARE BORN AT LOW BIRTH WEIGHT ARE CONSIDERED IMMUNOCOMPROMISED. NOT IMMUNOSUPPRESANT. BUT IT MEANS THEY GET SICK MORE THAN A NON IMMUNOCOMPROMISED PERSON. If you don't think they are that is fine. Let me tell you about the Swine flu post. Guess who got it. Tyler. Guess who didn't. A immunosuppresant person. So yeah.We catch things.

OK so that is my rant about sickness. And in the words of Barney " Keep your germs to your self don't give your germs to anyone else."

OK. Now on to my faith. Somewhere between leaving the nest of my parents and the feeding of the gospel being bird fed into my mouth I had to make a choice. I loved church as a college student and attended every week. I held various jobs. Some I loved and others not so much. I learned so much from one particular calling. I was the relief society president for over a year. I also worked full time and was attending UVSC. Yet I seemed to have it all together and worked hard. During that time I got the bright idea that I wanted to serve a mission.

I took out a loan, paid off my debt and started to get ready to go on my mission. It was while I was getting ready to serve my mission was when I came to the understanding of what the Gospel really meant to me. I have also grown and changed in what my Faith is since having a child. So please bear with me as I share a few of my thoughts.

I got called to Indiana. It was not the exotic mission of choice. I was with a bunch of girls that were going to Durban South Africa and I was going to Indiana. So, I struggled. A lot. Until I moved to South Bend. That is when I figured out a lot of things.

That is where my testimony grew and where I became a rock. Meaning, No matter what I have a belief of what I taught that no other faith or no matter what is said I know what I believe. This is when I met a few people who totally changed my life.

When Tyler was born we had a bishop that was not supportive of anything that happened. Because of this lack of support we moved. We really needed a support system. We moved into a ward that was very supportive.

When we moved to Arizona we were excited to start our journey. Ty was healthy and we were no longer in RSV season in Arizona so we got the go ahead to head to Church and we did. We went often in the beginning. When cold and flu season came around and we realized how large our ward was and how yucky it was we cut back. Then came time for Tyler to start going to nursery.

This is when my faith changed. You see. I still have a very very strong belief in the gospel. I listen and strive to do what is asked of me. But I have a hard time with this teaching of tolerance and the actions of others that is NOT tolerant.

When Ty was ready to go to nursery we took him in, sat with him and had his walker with us. We were told he was NOT allowed to have his walker because we had such a larger nursery he would run over the other little kids. So his only Independence was taken away. But what about all of the other kids that would run over MY kid. I felt that no understanding about our issues. So we kinda back off and since he couldn't go then we were backing off.

A year came and we would go sporadically. When he got old enough for sunbeams we took him and he would go and we liked it. We have gone most weeks since then. The ward is 800 people . Just because you don't see us doesn't mean we aren't there.

When we got back from vacation we had the swine flu. We were sick. We couldn't go anywhere. Including work. Let alone to church.

This week we didn't go to church because the person who is doing respite for us had the stomach flu. Meaning we were exposed and we KNOW that they won't missing so we didn't want to add more germs. We stayed home.

Fast forward to tonight. Its dinner time. the doorbell rings. The Elders are standing on our doorstep. We invite them in. Offer water, bathroom and then their question comes. They were told by a family that we were less active. That we were struggling and would probably benefit from them coming over.

We told them that was fine and they set up an appointment to "teach" us so they have a chance to get in their lessons for the week. But what chaps my hide is the above.

1. If we are struggling then why is it that we don't have a priesthood holder EVER over to our home. We have never once seen a home teacher. The few men we do know are not " friends" nor our home teacher. When called they are usually busy or not answering. Which leaves us to attend to brain surgeries all alone. With no other person to help administer to our child.
   
2. Why is i in a ward of 800 people I have ever visiting teacher over the age of 60. I have no friends, no family. Could you please give me someone that I could possibly become friends with.
   
3. Ty has had 2 brain surgeries and there has no been any support from our ward. No volunteer to bring dinner. No help for us. No support.
   
4. We have no friends. Our ward is not friendly at all. Unless you belong to the clique they have had formed for the last 6 years you are not invited.
   
5. Tyler is different and though they all claim tolerance they have NO IDEA how to actually show that tolerance.

I have had mothers say that Tyler is retarded. I have had people stare and laugh at him. All of this in a place of worship of some one who taught us to love everyone. Someone who said to suffer the children.

Instead you send the Elders over to my home to teach me and to tell me to go back to church when we never left. We just have to take it at our time because of the ignorance of others.

As I was deeply hurt by tonight's actions I read and reread an article by Boyd K. Packer. It is an article that has left me in tears tonight.

Some point from the talk:

1. It is my intent to teach doctrine which, if understood, will reinforce your courage and endurance, even foster a measure of contentment with circumstances which you did not invite, do not deserve, but from which you cannot turn away. We didn't ask for this. We didn't deserve this. Tyler didn't ask or deserve this. But our love for him we can not turn away.
2. Afflictions come to the innocent. Tyler is Innocent. He did nothing to deserve this.

3. Never Ridicule.

4. Parents, take time in the next home evening to caution your family never to amuse themselves at the expense of the handicapped or of any whose face or form or personality does not fit the supposed ideal or whose skin is too light or too dark to suit their fancy. Teach them that they, in their own way, should become like angels who “move the water,” healing a spirit by erasing loneliness, embarrassment, or rejection.
   You are all claiming to teach tolerance in our ward. We have seen no tolerance. We have not even seen love. Judgment and words like Retard have been thrown our way.

Think of this: Unless we die prematurely, every one of us may end up both physically and mentally handicapped. We would do well to make advance payments of service and compassion on which we may draw when that time comes.
Pres. Packard continues:

Why not help the parents who have extra things to do and extra expenses and are confined because of a handicapped family member. Encourage the teachers and social workers who show such devotion to them. And it would’t hurt you to donate a few dollars or a few hours to one of the many organizations which help the handicapped. If we do this, without the slightest idea of selfishness, it will remain in our account against that time when we may need help. And the works of God will be made manifest in our lives.

“Ye cannot behold with your natural eyes, for the present time, the design of your God concerning those things which shall come hereafter, and the glory which shall follow after much tribulation.

“For after much tribulation come the blessings. Wherefore the day cometh that ye shall be crowned with much glory; the hour is not yet, but is nigh at hand.” (D&C 58:3–4.)

Why is it that they can't do that. Why is it that I am feeling alone? Why is it that I walk this route with no help from those very people who teach the above mentioned things.

I truly believe in the gospel of Jesus Christ. I truly believe that when we get to the next life Tyler Will Be whole. I honestly believe that. I honestly believe he is a miracles. I believe that Joseph Smith is a prophet of God. I believe in the Book of Mormon. I study and read often. I am sad that those in our ward and some in our family can't understand the plight we are in. And that you can't support us.

I am saddened. Please come and walk a week in my shoes. I know I have a child of God that I am raising. I am feeling that every day. I recognize the miracle that Tyler is. He is such a special spirit. I wish that those who have felt because we are not "Active" could feel the spirit we are cultivating.

Practice what you preach.

Disability Awareness month

Three years ago our lives changed for the better but it forced us into a world of different. Some times I don't know how different we are till we get into a room full of other 3 year olds but when that happens I know we are different.

The slogan " different is good" isn't always how you really feel. Maybe for your choice of fast food but when you want to be like everyone else different is kinda ...different. The hard part. I want to be included in the same things but know how hard it is for others to include us knowing we are different.

In church we had a hard time sending Tyler to nursery because he couldn't take his walker because of all the other little kids he would potentially be knocking over but consideration wasn't take that that was his only way to move like the other kids

When we would go to the store people would notice stare and yet never EVER catch my gaze. They would avoid holding a gaze. I KNOW it was on purpose because I would stare right at their face.

Now that we are older and I still carry my preschooler we get comments. An example: We went to the gas station and we were getting sodas for 3. I had Tyler with me so I was also carrying a preschooler. A guy came in and said well maybe he should carry his own and walk. I smiled and said thanks but he can't.

A year ago that would have left me in tears. Now, I recognize it as an opportunity.

This is what I have learned:

People are curious. They don't mean it rude but people want to know why your kid is the way that he is.

People never know how to approach and ask. Who knows if the person even wants to be approached? What if it was me a year ago. I would not have been the wiser and known it was a chance to teach and educate.

People don't know what it feels like so they say things that may be offensive. Again an education thing.

So my plan of action of how I plan to teach my child and others around him:

1. For my child. He can do what ever any one else can do. I may have to find alternative ways to help him but he can do it. We may be slower at doing them but with a little help and patience on my part he will show me he can do it. I expect that of him. If we expect them to be different they will be.
2. Take the time to educate when someone asks questions. If a comment is made explain WHY they can't walk. If a comment is made as to why something is offensive try to explain why a comment like that would hurt someone else. And let others ask questions. Sometimes they just want to know and have no way to ask.
   
3. Teach other smaller children at the playground or other places that all though they can't physically do something they can DO something. We just might have to find something that they can all DO together.
   

So after 3 years I have learned a few small things.
I have also learned that love heals a lot of things.
I have learned that ignorance happens even with the best of intentions.
I have learned that life is a matter of moments that take our breathe away. Cherish each one regardless of how "able" we are. We are all "able" to love.



For more ideas on how to talk to your kids about disabilities go here.

Preschool Woes!

As previous noted I have been getting migraines. We have had no idea why all of a sudden they would creep up and I would be sick with one. Well, I think I might have an idea.

This morning was our functional vision assessment. What does that mean? It means we have to see what vision Ty has, how he uses what he has and what will we be looking at long term.

Anyone who knows Tyler knows that he can see without a question. How well he can see has always been a question. His doc here in Arizona doesn't think it is very good at all. The prescription we have is very strong and borders legally blind. ( -13 is considered legally blind, Ty is at -9) To put into perspective, I see at -2.75. I can't see ANYTHING without my glasses. Ty's grandma can't see anything even with her glasses. Although she has not had her prescription put into words like minus something I am going to put my "expert" opinion on what she can see and would put it to roughly at -9 or ten ( sorry Grandma we all know you can't see)

We have had Ty in glasses that he doesn't like to wear for over a year now. While we haven't seen a decrease in what he can see we have seen that he doesn't want to wear his glasses and he has a "lazy" eye. We are watching it to see if it is lazy or if the vision is just gone.

A little background ( aka boring medical stuff) to help you understand what we did to get us from point A to point B.

As babies come early they are given life support. The life support and low birth weight ( LBW) and early gestation play a part in the development of the eyes. The later gestation they are born at the higher their weight is and the amount of support needed to sustain life less. In turn they LBW babies of 800 grams or so are at a VERY increased risk for blindness, hearing and other anomalies of fun.

ROP comes in 5 stages. Stage five is retinal detachment and results in blindness, Stage 4 is the start of retinal detachment and surgery is needed. Stage 4 can still result in blindness. Stage 3 has zones in it that describes the severity of the disease. 1. outer eye 2. inner eye, 3. edge of the retina. Stage 2 is outer edge of the eye and Stage one is very minimal damage if any.

Ty is the unfortunate recipient of not only stage 3 zone 3 he is also the recipient of RUSH disease meaning it went from stage 1 to stage 3 in 24 hours. Surgery was performed to save whatever sight they could withing 72 hours of finding the RUSH disease.

Our appointments at the eye doc are frequent but I thought it was to see if his eyes were improving. I was nicely informed by the Doc that Ty's retinas could detach at any time letting my sweet baby go blind. So they watch him closely since he is at an increase risk.

Anyways, his functional exam showed that he has little peripheral vision and he compensates well. He will be needing VERY large print for reading so reading will be a struggle because the print will have to be so large that we will have to find other means for him. He might be eligible to read braille or use other devices as he learns to read. He however MUST be reading and not just relying on the other stuff. This of course goes into play much later.

Ty has no idea he can't see. He has "not seen" his whole life. So we are just taking the news as what it is. ( Well most of us anyway)

This is where the mom part takes over and you can't help but feel sad for Tyler. I feel sad that I was not able to keep him "in" and safe. That him coming so early has caused him such pain. Not just the looks that people give you but that he can't walk without an obivous "issue" and that his eyes do some pretty cool funky shaking. Is it my fault that these things are stuff he has to deal with.

The mom guilt kicks up and I wonder that fateful day in the NICU when me and Dallas had to decide if we were ok with a kid in a wheelchair and we said we loved him so much that we would "pimp" it out for him. Yet now we are 3 years down the road and I can't help but get hit by the ugly monster. The ugly monster that wonders at 16 will he drive, or at 21 will he get married. I know a mission is out of the question but what will it all be like for him.( And yes all these thoughts come from trying to figure out preschool)

The ugly monster that realizes that people are cruel. Even when they don't "mean to" but their actions are ones that make me as a mom sad for my choice made out of love. I wouldn't change not having him here with me. I would change the struggles he has. I would take them away from him in a heart beat. I would take all those people who laugh, and make jokes ( directly or indirectly related to him) and hope they get into our bubble. I can't help the monster go away. I can't make others be kind and loving. BUT I going to make good choices for Tyler. That we will still move on and be his mom and still try and teach others.

Ok , I think I am going to be ok. I hate making decisions that will impact more than today. Did you know what we eat for lunch will only impact what we have for dinner? Prechool... it will effect a lot!

AvonHELL!!!

Yesterday we took the "short" 53 mile drive to Avondale. Avondale is THROUGH and on the OTHER SIDE of Phoenix. It took about an hour. It was pretty pleasant but not what I wanted to do. We found the location of the lot pretty fast and had no problem getting there.

After talking to the Service guy we got the key to my car and we decided to get on our way. Dallas had the seat in the car so he took Ty. While heading toward the entrance on the freeway I decided to keep going until the air conditioner got cool since that was part of the reason for taking it in. I drove up about 4 lights and the air was not getting any cooler. So, I headed back. Dallas called me and I told him I was headed back because it was not cooler. Him and Tyler had all ready gotten off the freeway and was waiting in a parking lot close to the dealer. So they met me there.

I got out of my car and went up to the above mentioned service guy. I told him that it didn't work. That I was not going to take home something that was suppose to be fixed. Service guy was very busy and very upset that the air didn't work. He said I could "take it home and bring it back at my convience." I said are you kidding. I have a disabled child that gets pukey when he gets hot. The response. " we have a disabled person working here on cars obviously and his name is ( insert name I don't remember.) I don't remember his name because I almost died. My mouth dropped open and the guy looked at me and he said "oh nothing against you son!" I was like HOLY COW.. My KID IS NOT RETARDED. He can't walk and pukes when it is hot... What an insult. I was then livid as the guy walked away from me. I walked into the creepy manager and told him that I was horribly insulted and they haven't done their job.

He tries to arrange for a rental car ( since that is what the warranty calls for) and he proceeds to get them AFTER they had closed. So no rental car. He said he couldn't do anything. He said to give him 15 minutes to see how long it would take to get my car in and running or to get a used car available for me to drive home to come back at "my convinience" during the week.

We went to lunch and came back. They were able to get the car done that day. They told us it would take them about an hour. I decided to wait. It was done in the time frame. While I was waiting the creepy manager who was standing just a little to close, came back in and said it was done. He offered me a free oil change. I said are you kidding me. I wouldn't drive to Avondale for a oil change. That was the dumbest thing I had ever heard. He then volunteered to fill my car up the rest of the way.

While he was out I got "wind" ( OK a sales person told me) that the general manager of the place was there that day. I went over and told him of the problem with what had happened and that I was appalled that they would treat a warranty customer that way and that they would treat a "person" that way. I also told him of the insult that was made. I was LIVID!!( the hour just made me mad.. didn't chill me out!)

The manager said at that point that if something happened to my car he would tow it to and from at their expense and that he would be sending us a gift card to us to our favorite restaurant. I should have told him about the super duper expensive BUT YUMMY restaurant in Scottsdale we love.. but only came up with Red lobster.

So, we are getting a dinner to Red Lobster. My AC works. And I don't have to drive BACK to Avondale. If it doesn't work I don't have to pay to get it back..or drive to Avondale again.