Cerebral Palsy and a DUI

A week or so ago we were at Tyler physiatrist ( aka a Rehab doc.) appointment for a follow up. The follow up was for his phenol shots that he had during the summer to help with his cerebral palsy. During this visit it was suggested that Tyler is a perfect candidate for a baclofen trial and a possible balofen pump. As we were discussing details about the visit they inquired about our insurance and our coverage for Tyler.

( This is not a debate on insurance in ANY way. It was just what happened and I have a whole other post about what happened and why and insurance and all that jazz.)

When it was discovered that Tyler is not covered by anyone other than our private insurance for coverage they said they would not do the baclofen trial and he would not be given the pump. The reason for this is because it would cost to much for us out of pocket and they can't do that to the parents of these kids because the long term care is to costly.

Baclofen is a muscle relaxer. Without it he has continual muscle spasms. He continually burns calories and it hurts. It HURTS! It is like having a charlie horse 24 hours a days. As he grows the spasms will get worse. It will hurt more. It will cause him to lose the ability to walk if we aren't able to give him the medication and at some point he will not be able to function "normally." * Oh and the baclofen is on the 4 dollar script list at Walmart. It is a cheap, easy way to help*

This morning, a local news station showed a small trailer for a man that was arrested for a DUI. Though that isn't uncommon, the man was riding his bike AND he has cerebral palsy. Because of his medication to control his cerebral palsy he was arrested. He was arrested because the medication to make him NORMAL ( oh how I hate the term that was used but gee.. another blog!!) is what caused him to be arrested.

Tonight on Channel 2 news at ten they are going to show the Dash cam for the arrest involved. What makes this even more ironic, this particular officer has the MOST DUI tickets in the state.

The part that makes me frustrated, the only way for this person to be able to use his muscles is by taking the medication and by USING the muscles. Those muscles aren't going to work if he doesn't use them and if he doesn't have medication to help him.

Is it discrimination? How do I help my child grow up as someone that is looked at as beneficial unit of society?

The day after......

A 24 hour flu bug infested our house. We are SO glad it came and has now exited( hopefully) Yep, people get sick. Yep, its most likely the flu for "those" people but for us we are on the edge of our seats. When do we freak out totally and run him to the ER for CT scans, fluids and possible surgery, OR do we sit and wait and wait and wait and then wake up all fine. Or wake up all NOT fine and the above surgery comes into play.

I realize to some that the stomach bug wouldn't cause this much anxiety. It is just some vomit. But I can honestly say after the 2 shunt revision we last experienced, those little vomits in a shunt baby is what the docs call " impressive and better then projectile vomit" it is so impressive It literally will span my entire bed. Mostly because the force they are puking from is from so much head pressure a person could NEVER understand ( even myself) They are literally trying to relieve the pressure they feel in their brains.

After a vomiting episode Ty will lethargically lay there for a while. Literally, lay there. This is where my next *key* point comes into play for checking shunt function. While he is laying how bad are his eyes moving? How fast? Can he focus on ONE object? Can his eyes hold still long enough to not be worrisome. Tyler has a condition called nystagmus. His eyes always move. Constantly moving. Jerking even. The link has a eye that is like Tylers. His moves a lot fast but the idea is the same. Tyler does have periods where his eyes are VERY still. But a shunt malfunction is not one of them. AND a really bad sickness makes his eyes very bad. But I have seen his eyes both ways and I can tell a difference between head pressure and flu pressure. His eyes were not bad yesterday.

We got him to sleep pretty early for him and he did really well till about midnight when he was restless. I thought more puking would instill but it didn't. At around 3 am he woke up and said he was all done ( signing this at 3 am) and he wanted food and a drink. I got him his drink, and offered crackers. And a laptop did wonders for movies. HOORAY!

He was up from 3-5 snacking on crackers, drinking and watching movies to which I finally switched OFF the computer and put him back to sleep. Which we did sleep. Till around 9:45. It was the longest I have seen him sleep in a WHILE. It was not totally rest full to me because he has to sleep touching me and I really needed to roll over :)

Today we pretty much had our kid back. He was jumping on trampolines, throwing numbers and letters, watching Barney and being bored. And no throwing up.

So YES we are thinking bug.

Yes we can over react but I think it is understandable. We have learned to go through our "chain" of commands.

Ty is sick what do WE do:

Call Dr. Marisa, see what they suggest. After asking and answering a few questions from them they will tell me what they "think." Yesterdays was Nancy, if you think that he is broken you will know in a few hours ( its to early to tell either way) take him to PCMC. Call me. We will get things goings if needed. Thanks for not freaking out!( though I think we freak her out sometimes)

Lay there with him. Hug him and love on him. If it is a sickness dang that stinks. If it is a shunt he needs to know that we LOVE him soo much and that we will fix it and as he gets sicker and more pressing to get to the ER, we need to be close to monitor for seizures and those pesky heart rate drops.

And last but not least:

Get a blessing. At the end of the day that was what put him to sleep. A simple and powerful blessing from his dad. Ty had his eyes closed the whole time and opened them simply to say amen.

We love him and hope to make it to Feb. where we reach our one year with a shunt. We can do it. But above all we move on and keep going. Monday we go back to our routine.. a little skinnier and a little more weak but full force forward.

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.

IEP's

Individualized Education Plan. That is what IEP stands for. If you google it you might find answers that involved a * small* amount of anxiety for a parent. As one site says that IEP's are "rarely" pleasant. Makes you want to sign up and get one huh!

We had Tyler's annual IEP for school on Wednesday. I can honestly say it wasn't so bad. It definitely wasn't the most pleasant thing but it was better than the flu shot or the flu!

Dallas went with me and we met in the office with a lady from the district, the speech lady, OT, Vision and another lady. I don't remember what the other lady was nor what she did but frankly I kinda didn't like her much .

Though the goals are pretty straight forward and I think he is already meeting some of them and or WILL met them pretty quick it was nice to hear that he is participating in class. It is also funny to hear them try to nicely put that he is stubborn and if it is hard for him he will " try" it once and then say he is done. Or that unless it is his idea he doesn't want to do it.

It was nice to feel like when I had a concern it was valid and it was listened to. Except by the lady that I didn't like much. ( I think we name her Helga!)

Some goals we will be trying to reach in speech include using pecs, signs and sounds and to get him to verbalize as much as possible AND to sign and pecs several words together. PECS is a picture exchange system. While we have tried PECS in the past what tends to happen is he uses the picture, finds a gesture that will work or a modified sign and then the PEC gets thrown out the window. Which is technically the order of things but we need him to get the signs down and not just approximations. BUT they are coming.

One thing we suggested was really focusing on the SOUNDS that the letters make. And we have really been working on them at home as well. If we can get first sounds then maybe soon we can get first sounds and follow with second sound.

OT really wants to work on some vertical lines, circles and stringing beads and cutting. Apparently he can cut with modified scissors and cut using big fat kid scissors so we are on the right track. they weren't sure he knew how to identify objects, like circles, triangles etc. That is when we were able to explain that he can identify things like hearts, diamonds, squares, circles, triangles etc. which is awesome since he can't say them. and apparently draw them

Vision is trying to increase what they do know he has and get him more acclimated to school and his surrounds. Helga kept pipping in and saying that Ty should use canes and crutches to better get around .I told her we had a walker but he chooses not to use it. It is OFFERED to him every day as a way for him to get around. He stands at it and says no no and pushes it back against the wall. I explained nicely to Helga but she didn't want to listen so I stopped trying to get her to listen.

We brain stormed ideas and ways to get Tyler motivated to do certain things. They were enthralled at Tyler book collection that is found in my bag and was pleasantly surprised that he can do and tell you so many more things than first anticipated.

Over all a few sentences and suggestions were made, and a suggestion to the nice bus lady to please stop pulling my kids arms out of his socket and allow him the same respect as typical kids to walk up the stairs and get help on the seat.

Ty is going to do well in school this year. I can feel it. Dallas and I are always asking him to say letter sounds and repeat things. Sometimes we get no but mostly we get trying. It is going to be a year of very involved parenting, very involved CP docs, teachers, therapist and mostly we need a very involved extended family to help us.

I guess that is my plea with the IEP , Extended family PLEASE come and help us get him up to where he is suppose to be. Help us teach you what he does, how he can communicate, get him communicating with you and so YOU understand and HE understands. PLEASE

A well CHILD?

Our first appointment after coming back to Utah was today. We had a well "child" check. I guess after 2 they are not considered a baby! I don't think I have had any "stats" for years on him. Probably since we left our pediatrician and moved!

So, for all the people sitting on the edge of their seats... here is the stats for our Child!

Ty is 36 inches ( give or take.) He won't stand up straight because he is afraid of the thing that comes on his head. So they are taking the 36. For all of those who made the comment that he looks tall- well he isn't! He is only in the 2 percentile. He is much shorter than his cousin the same age but much taller than my sisters son Koy. So he is in between a 4 and 3 year old.

His weight is 31 pounds... BARELY! Makes him ON the chart for the second time in his life! The 15th percentile! That is ON THE CHART!

Exciting news huh!

* I do have to say Dr. M was pretty surprised by my lack of running to the docs when he got sick. I guess I have grown up as a mom to. I knew it was a cold and I knew it hadn't spread any worse. Next up H1n1 flu shots! BOO!*

Back among the Google searches!

I honestly HATE my blog being private. I figure if I am going to live this I might as well share it. Of course there are always more precautions you can take in making your family safe but one of the main reasons of doing this blog was to help others along their way.

When I was around 25 weeks pregnant I googled 25 weeker. I came up with a Women's blog that had just delivered a 25 weeker. We were just embarking on our 25th week so I was entranced by this womens blog. Her 25 weeker was born just a few weeks BEFORE mine came. Little did I know that we would run the NICU journey together ( in different states of course) and see her struggles, triumphs and journey through her moms blog.

I still follow that moms blog. I am not sure she reads mine but I have her on my face book and I participate ( though in frequently) on some of the preemie groups I once was VERY active in. Desperately in search of some information, some idea of what our future held.

I have really tried to blog Me, and my feelings. Sometimes they get taken wrong by others reading and read as I am unhappy or negative or plain bitchy. For those who take it that way I am sorry. I would be happy to converse with your privately. To come to some conclusion as to why you feel that way etc.

I enjoy looking at my site meter ( Thanks Amy for upgrading me!) and getting the googled words that brought people here. MOST are words like Age of viability, outcomes of early preemies, and most important words are ways that I feel like I can help someone if they come across this blog.

Is it all fun and games. Not really. But it is our life.

Not a activity that goes by, or a time in church or even going into the grocery store that I have to make accommodations that another person may NEVER think about. For example : You put your 3 year old in the seat to sit down in the cart. So do I. We shop. You lift your 3 year old out of the cart. East as pie... Not for us. Because he can't move his legs correctly he gets stuck. It looks awkward and it takes some accommodations on my part. What shoes would be better to not get stuck? where can we do this awkward exchanges to avoid stares of "what is wrong with your child" from on lookers. I don't Ask YOU for these accommodations and realize you know nothing of that small accommodation.

We can't take a simple trip to the zoo without me thinking ahead. He can't see the animals. Unless they are close he is out. He is looking into a blank canvas. While your kid i LOVING the zoo my wants to love the zoo but can't see it. Not his fault. I don't ask you NOT to enjoy the zoo, it just takes me longer to get us the accommodations that we need to enjoy a trip to the zoo.

The blog link was changed to prematurity with love for a reason. All of our accommodations that we are making for our child are changes we are making for love. All things we do in our day is all about Tyler. All about him. Our whole world is Tyler.

We parent with love. We don't spank. We have made our entire day's schedule revolving around one person. What his therapy is, what school is, what swim lesson. Just like EVERY other mom. Then we get to parent the prematurity. We have horrific appointments, bumps in the road, Surgeries beyond understanding. Yet we still do it with love. And it is LOVE... Accommodation, appointments, stress, bad days, all of it is because we love him.




So, please take the blog with integrity challenge with me. Disagree with the issues but do it with kindness, not to be horrific and mean. I have had enough of that. I am issuing that same respect. Please, be kind!

My Hero

Dear Hero,

The day you were born was the day you became my hero. You are the strongest, most loving and most amazing miracle that ever entered my world. You are an inspiration to everyone who meets you.

As we have watched you grow, you have done more than you were ever suppose to do. Me and your dad KNEW you would do them. Our Hero has never given up and has pushed through it and done it all.

You make me smile when you hula dance with daddy. When you ask for ice cream because Barney has one. When you give your daddy kisses because Tiger gives kisses. You keep my heart in you hand when you climb up on your daddy and you fall asleep. When you get home from school and head right in to his office, even if he is gone, and sign dad and fish.

I fall deeper in love with you when you pretend to be a flamingo. Or when you take my hand to show me what you want. I fall deeper in love with you when you sit at a table like a big boy and have "conversations" with your daddy and I without saying a word. I love you when you smile that smile and you make that belly laugh. When you lay down ad raise your feet and ask for piggies. When you take rocket with you so you can be brave. When you ask for mom to trace your numbers with you. I love that you work so hard at therapy. That you work so hard to try to say words and communicate with us. You walk like a big boy and you are the best big boy I know.

How can a spirit like yours be trapped inside that little body? How could that little body change me so much. YOU ARE A HERO.

We know that things will get hard. We know that things will hurt. Remember, you are a hero and you will always be a miracle. You will always be my little boy. You will always be my hero.

Tyler.... A hero. That is what you are. A hero.
Courage doesn't always roar. Sometimes, courage is the Quiet voice at the end of the day saying.." I will try again tomorrow."

October 12th 2005- The best day ever

The NICU was not always just bad. There were good times as well. It was a roller coaster but with all rides there are times that you remember even more than the bad. For all of the ride I wrote them down. Sometimes as you read the bad the good come back, in a flood of memories. It is THOSE memories that make me smile. That make me proud to be Ty's mom.

On October 12th I was given an amazing memory. I was able to hold my sweet little baby for the first time. Given all that he had already been through and all that was beginning to happen and all the unknown to sit there and hold my sweet little boy was more than what I needed at the time.

The day before we were all ready to hold him but we were ushered out because another baby was coming in. We were already to do it and they wouldn't let me. I was so upset. With all the NICU hormones and all the pregnant hormones I started to cry. I ran out of the NICU in tears. I was so angry that I couldn't hold my baby.

The next day we came in and we were moved out of our spot and 2 more babies came in. The one from the night that I couldn't hold him and another baby. So here we were waiting to hold him.

The nurse and respiratory therapist were a little apprehensive to let us hold him because he was still on a vent. They had to bag him because he needed to be off his vent. We got all set up and we they put him in my arms. It was amazing.

He loved it and he did really well. They had to keep him warm by warm blankets. Dallas and I both got to hold him. We weren't sure when we would get to do it again.

That day is a day that I close my eyes and remember EVERYTHING that happened that night. Everything I felt and everything ounce of love that I felt that day with that one pound bundle in my arms.