The Catch up-

WOW, did I miss 2 months or WHAT!

I guess when you get to busy and in over your head you don't know what to do with your nights and you don't document a dang thing.. Whoops.

So here is a overview to catch up. November is a big month full of Thanks and prematurity ( not thanks!) but we have to celebrate something. So education and love is what it is. Ready or not, here is the ENTIRE month of September. October might get its own.

September hit our 4 month mark for our surgery. It has been the LONGEST 4 months of my life. Ok it is probably closer to 5 but who is counting. So we had to go in for a few X-rays and to fix a small pressure sore that we were having. Tyler is seriously a TROOPER. Grayson is an even bigger trooper and he has won the award for the best brother award. We figured it out, Grayson has been to therapy with Tyler since he was 3 weeks old. He has been to more doctors appointments than most kids their entire life. Usually he is really good. But it has caused him to demand pictures of X-rays to look at on the iPad when most kids are playing games. (AND he sings songs about " Hydrocephalus" and plays WALK..... Not normal!)

opps... See. Off track already.

I don't have a sitter for appointments and so Grayson went with us. X-rays were way cool this time and took Grayson in the back with the tech and he watched while Tyler's legs and feet came up. We ended up back in Xray that day 3 different times.



Grayson practicing "letters" He has a bag that only goes to appointments and church. Poor toys get more action than the ones at home lately.



Tyler tells the Xray lady jokes while they zap him up. He is a real trooper too. Those positions are not easy to keep him in. But my fingers look awesome on X-ray!

By the time we are leaving, everyone is to tired to walk on their own, so I get the brunt of it. This is 90 pounds folks!!! Plus a diaper bag/ backpack on my back. I am fat, and it is STILL hot in September. Talk about GROSS!!!




Almost a year ago Tyler's old Respite worker asked if Tyler could be in her wedding. I thought Sure, but he is a people hog and he will take over and become an announcer and embarrass us all! She was fine with it and was so excited. So we got him a purple shirt and he matched all the big boys in the wedding and off we went. Brynne married a professional fisher man. So Tyler was the ring bearer. He had the rings on a fishing pole. It was so stinking cute. We went to the wedding rehearsal and sure enough, he stole the show and I was DYING of embarrassment. Brynne and her family, and the older boys in the line, LOVED him and he had a such a good time.



Wedding rehearsal with the family.



Tyler wanted to stand the whole time but we convinced him a chair was a good idea. He did a great job with his walker. He was happy and go lucky the entire time at the rehearsal and LOVED the sweet girl that was the flower girl.



The day of the wedding was SO long and hot, But Tyler did a great job. He also decided that he didn't want to use his walker and off he went. We didn't stay for the dinner after but we sure had a lot of fun!





Trying to cool off before photos. It was SOOO hot!

Tyler also had his birthday party in September. This year we went to the bowling alley. It is for sure a favorite of his. We invited his school class and had 4 of them come this year. It was a great time and by all. Tyler LOVED his party.
September came and went........ there was a 4 week countdown to the WALK.

A Special Kind of Mommy Guilt

10 years ago I was naive. I thought when you got pregnant, you had morning sickness once or twice. Had a gorgeous glow. Tons of energy to finish your semester at school or keep working till you popped. You birth a baby, hang out and be the mom for a few months, then got back on with life. You find sitters to finish school or work or you become a stay at home mom. You go to play groups. You hang out with all the ladies in the ward/area/family/ that have babies the same age. They grow up together and become friends, you become friends with the moms of these picture perfect moms because you spent HOURS at the sports complex with them, and your life lives out happily ever after....  and then those Babies grow up and  they get married, have more babies and the cycle continues-


BUT-  That didn't happen ... twice.

     
Though my pregnancy with Tyler was not text book by any means, ( OK at all!)  it changed everything about my life and how my life would be. There were lingering thoughts that a baseball game or a lacrosse game, but there were also bigger possibilities of wheelchairs and life long limitations and disabilities. There was also a part of me that always thought there would be a miracle and that we would be skipped over and he would be just "Fine." We were all praying, fasting and doing a whole bunch of everything that you thought of that would make him "fine." But that didn't happen either.

The ride of this Mommy guilt was just beginning. 10 years later we are still riding. Not sure we are up right now or just on a coast, but we haven't gotten off the ride yet.

There is a few steps of this mommy guilt that as Special needs moms ( or chronically ill) go through. At first Tyler's life was a fairy tale. We tried to have everything upbeat and that he was doing great and wonderful. The few times it was hard and not ok. But no one wanted to not see a miracle. For every bad, there was this knife turning inside of me. The one that made me rethink everything. Did I do something, did I cause this? What could I have done differently?

Denial. I kept asking our pediatrician if she thought that Tyler had CP. She would use kind terms, like higher than normal leg tone, but no. He didn't have CP.

When we would go into a new specialist or the NICU follow up and something would come up, no one would tell me, no he doesn't. So we just went and worked harder.  I put everything I had into helping him reach milestones. EVERYTHING. I fought so hard those first few years.  I felt so much guilt that I did this to my child.  That I was going to figure out a way to work hard enough that I didn't feel guilty.

Every time that we would get to meeting a milestone I would do the micro analyzing of every single detail. We would count super fast so he was sitting up for longer periods of time. Or he was standing up or he was doing this or that. It was positive, positive, good ALL the TIME.

It wasn't until he was just over 3 and still not walking on his own ( though he was doing more than what we were told he would do) that we were sitting in the neurology office of Dr. Bernes. He came in to a little boy walking around the room holding on by one finger, walking around the office. As he was talking to us, unsure of why we there, he said " You know he has CP right?" I was FLOORED. It was then that I had to face the life long disability rights in the face.

There was the guilt again. What did I do? How could I do it to my child? What could I have done?

Was everything rose? No. Not so much.  Honest? We tried. I truly wanted the miracle. That instead of always getting the bad part of the .1% We would be that .1% that would be a miracle.  We would beat the odds.

The further behind we got brought on the next part of the mommy guilty or what has now moved into the broken mom role.

I would avoid places and people who are pregnant, people who just want a "healthy baby" and people who were just unkind with their words in general.  I couldn't handle it. The baby part was to much for me and I would literally leave any event. Even family events.

Now that the journey is well on its way, I now avoid specific "Types" of special needs moms. I can't handle the constant telling me that because our diagnosis isn't exactly what they have, that we can't be friends. Or that we can't agree to disagree and just put down the judging from every side ( even mine!)

A wise women once said, "Can we lay down the right to COMPARE and try and find something to share... SOMETHING anything" I took that as stop the mom shaming, stop the "you think your kid is sicker than my kid" shaming and just agree to disagree and who can help you find the resources for your child that you hadn't thought about. Maybe a Hydrocephalus mom has a resource for a CP kid or a Autism mom has some ideas for a out of control 3 year old. But you ( or the mom) can't put down the difference to just allow us to SHARE and hold on to SOMETHING that is the same. There is always something that we can use to empathize with each other.

As the ride progress we found something that Tyler was good at. And we ran with it. We accept that something is ok. We accept that something will make it work and he will be ok and we make it ok. Everything from a chair, an iPad, or do we teach him braille or to use a stick. But whatever it is, we push him. He isn't a quitter.

We started to focus on what he did well and stop worrying about making him "mainstream" and "normal" and allowed him to be "extra ordinary" and the super hero kid he is in his own environment.

Dallas and I do grieve. Both of us. But not together. We do it in our own ways and in separate times. Usually when one is strong enough to carry the load, the other is weak and breaking down. It has gone this way for 10 years . We don't have a choice but to o it that way. We have 2 babies to take care of.  We do it that way because we have to. We need each other.

Does Tyler grieve. NO!! He sees himself for what he is, just a Boy. A  Super Hero and powerful person. He draws people to him by just being him. He has an old soul. And he has an incredible tolerance for pain. He has courage, he is brave, he is smart, he is cute and he is VERY VERY kind.

So what does this mean?

As a mom, and on the eve of Mother's Day weekend, we go into the weekend where we are thankful for our own mothers, but also celebrating with our own motherhood, I am celebrating my children. Both of them are miracles in their own right. Tyler, we fought to keep him here with us. And 5 years we fought to have Grayson.  Nothing makes me more proud than to say they are mine. There are downs and there are ups. There are times we coast. The guilt doesn't go away and at this point it probably won't EVER go away, but the drive to be the best we can be, will always be there for all of them!

What a LONG month this has been. I have started a ten blogs about the stuff we have been doing and finished none of them. Something always comes up, or I get frustrated or the inner conflict I keep having always seems to make it so I don’t want to push publish.

T’s school year has been going. Not awesome like I had thought it would, but not so bad either. We have had some major complications with communication and major frustrations in trying to figure stuff out.

Ty had his testing done for second grade and he got 3’s out of 4’s. So he is on task for a 2nd grader in most stuff. Of course the take into account that he can’t write and that he can’t do some of the things he needs to on his own. But overall he is doing really well. Our first biggest challenge is getting them to follow his IEP. Some of the things are being over looked. I am sure not on purpose, but none the less, still being over looked.

We are also working with him on math. He is slowly grasping the concept of it but they are learning touch points and we have had to learn to adapt his ability to figure out the touch points. I tried coming up with a great idea and he seems to be catching on, for the most part.



He has done really well, he just doesn't love homework. Plus he has to do homework after we have him therapy all afternoon after school. Sometimes I am sad he just can't be a kid. We will see how well he tolerates the "normal" activities of scouts that comes after an hour of Physical therapy.



Our success of having his seizures slow down was slow lived and we are back to the drawing board and having to up his meds to a WAY higher dose. It kinda makes me sick to shut the door at night and turn off his shows because I never know if he will wake up in the morning.

We celebrated his birthday this week. I was going to do a birthday post but am going to skip it this year. There are to many private emotions that I don't want out there for others to make fun of me over ( and YES sadly there are people that would do that) and I would rather have them in a more supportive forum where those people are NOT invited to be.

However, he turned 8. Had an amazing time and three days later we are still having birthday activities. In 3 weeks he while have his baptism and we will have cooler temps and Halloween to look forward to.

Overall, we just keep plugging away. I will gain 12 hours more "work" this upcoming month and can't wait to have all my hard work FINALLY pay off. But it will and I am more determined ( thanks to those who aren't all that supportive) to succeed and keep on going. Our five year plan might even be shorter since I am more "complete" than we thought.



Oh and it looks like we will probably be in Utah again in November for a gait study ( for 2 of them) bike measurements and phenol. Then three weeks after that we will be having botox here. Next week we do orthotics and therapy and well baby checks for everyone. Guess that means flu shots all around.

DDD Visit

The same day as Ty’s IEP at school I had scheduled an appointment with his Case worker for her to come do her home visit with us. Ty has to be there. I have no idea why, because she didn’t ask him one thing. But the house was a typical mess with Ty just getting done with breakfast and me not moving very fast because I didn’t have to take him to school. Dallas had done the feeding and then got ready for work.

So frantic and busy was how we answered the door. And naked. Grayson and Ty were naked. Ok, they had diapers. As we started the interview, she literally had nothing to say to Ty but we had to have him there.

As the interview continued we went through and added some goals for Ty. Nothing new and nothing that hasn't been on there. But we did the last ISP when I was getting ready for a hysterectomy and we hurried through.

To make a not very exciting post short so we can move on to awesomeness, here is what the end result is.

Ty has 600+ hours a YEAR for respite. It turns out to like 10 hours a week.

Ty has 40 hours a month of Rehabilitation services. Turns out to be 10 hours a week. Hab services the person works one on one with Ty for certain things that he needs work on. It also includes having him out in the community to make good choices and learn to do fun things.

The NEWEST and most exciting is that Ty qualified for Attendant care hours. 13 of them to be exact. So if you aren't good at math that is 33 hours a week of help for Tyler. You have NO idea how NICE this is.

Ty is approved for 2 times a week Physical therapy, OT once a week and Speech once a week. We currently do not have any of them. We are having hard time finding a center or even home based for him. We are working on having some DTS hours for him ( which is for Day time service hours) to allow him to go to a sort of summer camp or something that is geared to him.

Having help throughout the summer is a DREAM come true. We will be starting weekly therapy in Phoenix if we can't find a local east valley location so having someone there to help will be amazing.

The above is the reason we left Utah. Utah we got NOTHING. No help. No long term care. NOTHING.

Now on to the fun stuff.


When I hit publish on this post we have 2 more posts before 1000 on this blog ( I have had 2 others that we have saved for journeying purposing.)

Any ideas on what we should do? 1000 about Ty and us? Questions and answers? A giveaway!?



An older but good photo for your viewing pleasure of a pretty BLAH post...

Meet the Teacher

Everyone started school this week.

But Tyler......

Ok, but the whole school district's kindergartners. He didn't care much UNTIL the bus came to make their route and get times. I took him out to met the drivers and he climbed on, sat down in a seat and when we tried to get him out he cried and cried and cried.

As I got him off the bus he told me that he was so sad because he wanted to go to "cool." He was devastated. I carried him in the house and he sobbed and sobbed. He said he wanted to go see Miss Melanie ( his teacher) and that he was suppose to ride the bus to "cool." That his note told him he could ride the bus.

Wednesday was our day to meet Miss Melanie. She needed to do some testing and see where he was and see how much of our day would be in the transitional kindergarten and how much would be in the traditional. Ty did really well and will be spending most of his social time in the regular class. He will also be in for a few other subjects as well.

Ty did a great job with his letters and numbers. I was glad that he did so well. He is funny and had everyone in there laughing ( as usual) and he was ready to stay and be at school. We headed to the office to sign papers and fill out regular registration papers. This is always an ordeal when we have to hand over a birth certificate. I always get asked if his weight is a typo.

After papers we went to the store. Ty was so upset that we couldn't go to the merry go round. He thought we were going to go see a merry go round. Poor kid, just can't catch a break. I mean really.. A merry go round.

School is going to be good for Ty this year. He will have all the therapy he can at school and we are making some major changes to his braille options. We will be keeping the therapy private as well. He really needs the PT. Poor kid.

As the mom: I can't wait for a routine and only one kid to drag to the grocery store.

We are back on the wagon

We fell off the wagon. It wasn't a tough fall and frankly didn't hurt much either. It was a relief actually. But now that we are starting school and we are looking for a way better routine we are back on the wagon.

We had our first PT evaluation since getting disability for Tyler. Disability for Ty is amazing. AMAZING. First, we don't have to worry about him being covered. Second, we don't have to worry about his therapy because we don't have to come up with the 20 percent. I never in my life wanted to base care on what we could afford. I figured I would personally go bankrupt before I did that. Well, I am personally bankrupt. Personally meaning everything is under my name and it is showing up as REALLY bad on my credit. Now that isn't an issue.

After not loving our therapist that we were driving 2 times a week 50 miles for a grand total of 80 minutes of therapy I decided that we would do more activities at home, going out and playing with kids and just taking a break. Then we found out we were going to have Brother. We had a nice break.

After our Phenol shots in July I signed us back up at a closer facility. The PT there is amazing with Tyler. The last PT Ty cried through the WHOLE session. Those that know him know he doesn't really cry. But he hated it. I hated it. This one ROCKED. Ty never stopped talking, let the guy ( Ben) do anything and everything he needed.

Over all Ty did really well. No one knows how the heck he stands and functions. How he stays on his feet is a medical mystery. Ben doesn't think bracing is a good idea and would prefer just shoe inserts ( THANK YOU! We have been saying this for years!) and thinks that the baclofen trial might be a wonderful idea.

We will be on the schedule once a week for several months.

Today was our Speech evaluation. We will know more how it went in a week. In 2 weeks we have our OT evaluation we will most likely be once a week. So we are back to 3 times a week!

Welcome to the therapy band wagon....YAY cerebral palsy!~

Marriage, Divorce, Therapy and Love

When Dallas and I met we met in a THEN unconventional way. Now, 1 in 6 couples met and marry by online dating. Back then ( you know, when Dinosaurs roamed the earth and Orangeville had a pizza shop) it was not common. I didn't even really want to tell people that we met online.

After we were engaged I took him to my home town, Orangeville Utah. It was the first time he had driven to the end of the world. It was also the first time he would met my grandpa. Who didn't understand the whole online dating thing. He did "nicely" ask if Dallas was a serial killer!

The town isn't big. And word spreads super fast and everyone knew we were on our way to marital bliss. A few month later we find out we are expecting Tyler and threw our plans for a loop.

Ty was born 3 months after we were married. We spent our entire married life with me being sick ( We know now I had hyperemesis and that you aren't' suppose to have your head in the toilet every single day for HOURS at a time and that water is suppose to stay down) We also had complications in the pregnancy before we gave birth 3 months early.

Here we are, a newly married couple in the midst of a crisis. Literally.

After Tyler was taken to a different hospital than where I was at we had gone up to visit on a "visitors" pass from Alta but we had to be back in a certain time frame. We got back, I was exhausted and Dallas climbed into my hospital bed with me. He held me for a while. We looked at pictures of Tyler and I tried my luck at pumping... again. After a little bit the charge nurse came in and brought us Juice, cookies and crackers and sat down in my room.

She mentioned that the nurse the night before was so moved by how much Dallas loved me and how much we loved each other that she was in tears that night. The nurse was not LDS but the charge nurse that was talking to us was. She said she knew that we were newly married. She didn't know how long. But she wanted to talk to us about having a special needs child, a sick child and that this will either make or break our marriage.

I made it a secret goal to strive to have it MAKE our marriage.

5 years ago I made that promise to myself that I would MAKE my marriage. That I would work as hard as I could. Did you know that the divorce rate for parents of children with special needs is a STAGGERING 85-90%. That is high!

But I have failed.

We are not getting a divorce ( sorry inlaws ;) ) In fact far from it. But I have still failed at making my marriage the best marriage. I have faults and flaws and they are large. But I am married to someone who lacks those faults and flaws and he is a far better person than I am.

I do not know what it is like to "raise" a child that has no extra needs. I have "raised" my niece for a long time ( I was the best nanny she EVER had) and I know that what I experienced with her 24 hours a day and what I experienced as a mother was very different.

Trials came with Tyler that I don't know if I knew how to handle them. So as a married couple we did the best we could. Somewhere in the last little bit we have had the focus not on our marriage as a couple but mainly the focus on our child. He is/was the center and what he wants/needs he gets. No matter the expense.

In the last few weeks I realized that I refer to myself as we. We are coming to this. Or We have an appointment. Today when I was talking to a Doctor about ME, what I needed, what I expected. I said we. Not me. And she asked, will we be working with 2 people. It was then I realized I don't know me. I know We. And not just WE but a me and Tyler and not a We, Dallas and I.

What happened to Me. ( kinda self centered I know.. but there is a point) With all of the stuff that has been going on and the sadness and heartache and hardships, I feel that somewhere I forget me.

I know I struggle with depression. Some say I struggle with other "personality issues" ( right mom :)) but really I think I sometimes struggle with knowing who I am when times of trial comes full force to my door.

I need to find that Self. The ME, the I. As the journey starts going then I think it will work itself out just a Little bit better.

So tomorrow, I am off to find a little part of me for an hour. And I sure hope the one looking with me is nice.

Cerebral Palsy 101

My cousin Chelsie did a FAQ/101 blog on her little girls Cancer so after this most recent adventure with Cerebral Palsy I thought I would offer a little 101 on Ty and his Cerebral Palsy.

First and for most, Cerebral Palsy is a non degenerative disease or rather condition. Meaning once the initial " damage" is done it is done. However, it may seem to get worse as they get older because of the changing of their muscles and growing. Also, every child with cerebral palsy is different. A mild diagnosis for one may include a talking but not walking child. Or one walking with assistance. OR it might show little to no impairment to the naked eye, while someone like Ty is visible. ( Ty does have a MILD diagnosis)

When does it occur? Usually Cerebral palsy happens sometime right before birth or shortly after. For some it is a "medical mistake" for others it isn't. I am not sure what you want to classify Tyler's as but his occurred about 24-36 hours after birth when he developed a brain bleed.( His was a grade 3 and 4. Grade 3 touch and damage some brain, grade 4 kills brain tissue) This bleed is when the damaged occurred.

Is it Curable? No it is not. Again the damage is irreversible and therefore there is nothing that can be done to change it. There are things that can be done as management of the effects of it but he will always have it.

When is it diagnosed? That really depends on the child, the doctor and the team of doctors involved in the care. Ty had an aggressive team of therapists to start but was not given a diagnosis for CP till he was 2.5. Some have received a CP diagnosis when leaving the NICU others before they turn one.

What Type of diagnosis does he have? Tyler has spastic diplegia cerebral palsy. Though he doesn't fit in that category completely he does have that diagnosis. For example, his legs are tight and his ankles are tight but his arms are tight as well. BUT they are functional. He can't touch his shoulders or straighten his arms out completely BUT he does have full function of his hands and doesn't keep his hands fisted ( which is common with children with spastic muscles) Therefore putting him in the category of hemiplegia is incorrect.

Spastic means he is TIGHT. Very TIGHT. For example, Tyler cannot sit Indian style because his body doesn't let him bend that way. When you change his diaper and he is upset he is VERY stiff and it is hard to get him to bend. He walks stiffly. So some muscles are working way more than its fair share. This type of muscle tone causes other problems. Hip dislocations and scoliosis are common as is bone deformation. Tyler does have bone deformation in his feet.

Ty will have skeletal issues with his Cerebral Palsy. His feet right now are the most obvious. They are somewhat deformed. His feet are also small. I haven't had to buy new shoes because he has outgrown them in over a year. His legs are smaller and he is overall SMALLER than a typical almost 5 year old.

What treatments will we be doing? Ty has been getting physical therapy once a week for several years. We drive to Salt Lake to get it at Shriner's because a typical insurance plan only covers for 12 visits a year and sometimes they won't cover for rehabilitation. In other words, they know it won't be cured so they don't want to pay for it.

Tyler also gets speech and generally he gets occupational therapy. These basically help him with day to day living. They make him "functional."

More intense treatments include Botox, phenol and possibly a Rhizotomy as he gets older.

With his phenol he gets serial casting. Serial casting is when he gets a really good stretch with casts on that gradually gets better and better with weekly cast changes. Last time it was on for a month. Phenol only lasts six months.

Ty also takes a nightly muscle relaxer called Baclofen.

Ty won't be able to run and play sports like most kids. But he does do really well and finds ways to do what he wants to do. He is very good at adapting so he can do what he wants to do.

Support is HUGE. We need the support and want support. We are often over whelmed and we would love to be able to send him to a sitter or go out but finding a sitter for him is hard. We are thankful for those who do help us.

Please, we would love to answer any questions you have regarding Tyler, his care and how he functions. He is a great kid and we are more than happy to share!

Music

" Music gives a Soul to the Universe, Wings to the wind, Flight to the imagination and life to Everything!" Plato

This was the quote on the wall where Tyler received Music therapy while we lived in Arizona. Only recently have I Really thought about what music does for him.

When songs are played Tyler comes alive. He can't help but do actions or smile or stop in his tracks in order to participate.

If we get ready a little too early in the morning he gets super anxious waiting for the bus. You can often find us sitting outside on the bottom step singing songs. When we start songs he sometimes gets mad but I find he cant' help but start to dance or rock back and forth and then the smile escapes his mouth.

When we sit in church the second the organ starts to play he sits up a little straighter and he "sings" along. After everyone is done he quietly claps and says " a job" ( good job)

In Primary he sits on the edge of his seat and "sings" and everyone loves watching him.

It is like he really does have wings when a song is there. While he tries to express himself, he can at least enjoy the music.

Who knows. Maybe Music is the Key to unlock something that will give him a voice!

What will it be like?

Ever since I had a little baby smaller than a barbie laying in the NICU I often wondered what he would be like. No one can tell you exactly what and how your baby will be in the future especially when we were looking at is severe brain damage ( grade 4 bleed = brain damage). It didn't stop me from asking though. I am on a few online support groups and that is one of the FIRST things a new mom of a 23 and up weeker will ask. What will my son ( or daughter) be like in the future? When will they hit such and such a milestone? And sadly the answer is no one knows.

When we were our that is what I wanted to know. I wanted to know what he would be able to do. As we started getting bigger and we missed milestones or hit them but hit them late it was hard. But we were happy for each one that was hit.

But the life long question persisted. What will he be like when he is 3 or 4 and now I wonder what will he be like when he is 15 or 16.

It doesn't really matter, but I wonder what others will think. Will he be teased? Will someone hurt him? I hear horrible stories of children who can't defend themselves and can't talk and tell others what is happening. It makes me scared.

But then there are stories that make my heart so happy! On the Morning show a clip was show about a grown man with Cerebral palsy. His walk was really bad. It was obvious that he had something "wrong." He was basically told around age 5 that there was nothing else anyone could do for him. And then he found Dancing. It changed his life.

Then as I was watching I saw THIS! ( It won't let me embed it... so PLEASE click) This is a senior in High school who has Cerebral palsy. He is on the BASEBALL TEAM. He is a pitcher and he is one of the best ones they have. He is like Jim Abbot the one handed pitcher. He throws and catches with the same hand. His twin brother has severe Cerebral Palsy and can't walk or talk and is confined to a wheelchair. Mark ( the pitcher) says that his brother is his inspiration. He has it so much harder.

Though I know Ty won't have a perfect walk and that he is impaired, he does walk. He LOVES playing soccer and loves throwing balls. I have no idea if he would want to dance, but I know he can do whatever he wants to do.

I know that by pushing him with the therapy and encouraging him he will be the best Tyler possible. I wish a million times over that EVERYONE could see him as we see him. Doing what we see him do and being the funny, and cute and amazing 4 year old that CAN do anything!

Botox... Not our friend

We have casually dropped the word BOTOX on the blog a few times. I am sure perking up those ears wonder why on earth Ty needs botox. Here is the quick explanation. The Botulism some how makes his muscles less tight. Not sure how it does it but it does. It allows better movement for him. It is repeated every 3 months or 6 weeks. It is not offered under sedation for him because he gets 4 shots.It is a little worse than an immunization. It is still super tough to hold him down for.

Today was BOTOX day in our house/ Dr. K's. Dallas couldn't go with us today so I was on my own. Ty is a tough tough cookie. He started out pretty good and was a pretty happy kid. We brought a video of Rocket and Little Einsteins for the trip. He watched and played until Dr. K comes in. He STOPS and shuts down.

She has his shots all ready to go, we do a little chit chat and she talks to Tyler. We put him on my lap and turn him over. She puts on electrodes and starts doing the shots. Ty is in Hysterics by this point. Not only does it hurt but he is in an uncomfortable position. He is MAD. MAD MAD.

He is crying and screaming and trying to get away so much that he has broken some blood vessels in his face :( As we got him ready for bed the red puffy blotchy stuff is apparent and the little red rash.



Botox is over. The day is over.

Icing on the cake, Yes I saw the mean comments on my face book over it. No, sedation is not offered here. It isn't suppose to be that bad. He gets 4 shots. BUT we got home and the speech we so desperately need decided that even though we have accommodated her schedule ALL summer she is going some place else to work. Sorry.

Waiting lists are quit long. We are back to square ONE!

Countdown to Vacation

Sometimes I wonder if visiting in laws. outlaws and parents, or whatever you want to call them, is really considered a vacation. In order to go I feel like I have to overload our schedules to make sure that everything got done before we go. And sometimes things just happen to land on the week we are leaving, making it a busy busy week.

To add insult to injury I just spent 4.5 hours reading a online driving course that had many typos and tried to insert humor. It even spent the amount of time you spent on a page. So if you were a fast reader you had to entertain yourself for 1-3 minutes while the timer counted down.

Today was the first day to start off our week. Dallas has had insomnia for about 2 weeks now. His meds for his insomnia are apparently NOT working. I, being the very supportive wife I am, have taken full advantage of his early morning rising to sleep in. Why not ? He is only getting about 2 hours of sleep and is up around 4 am. Just in time for Tyler to wake up. You read right 4 am. SOMETHING has to be in the water in this house.

We got the jeep back for about 3 days last week and had to take it back. A few things weren't working right so we had to take it back. Normally that isn't such a huge deal but this week it is a huge huge deal.

Because Dallas and I are going to be going to different places for vacation ( yes you read that right as well) we have a lot to do to get each other ready to head off to two different places. And because of the above mentioned insomnia today was a good indicator of how busy the week will be.

Dallas started the day with Ty around 4 am. Dallas sent Ty back to bed and he woke for good around 6. Dallas was nice enough to stay up and feed, change and play with Ty. At around 8 Dallas came in and Ty and I leave for the morning. We checked my mail and played and read books. Woke up D to head to his docs appointment for new meds and we got ready for our busy afternoon.

I feed Tyler at noon and hope he eats fast enough for us to get out of the house one. We have to be out on time because this appointment is a beast to be late for. We leave at exactly 12:58. We have to travel to St. Joe's in downtown Phoenix. I am getting super good at finding my way to 7th street ( or is it ave) and we make it before 2.. barely. Only we find that our appointment isn't till 2:30. Given the drama we had last appointment I was fine with being early.

*side note* While waiting in the waiting room you run into a million people. Because of the type of doc it is the disabilities of the people are usually very apparent. Today a really cute mom who's daughter had severe CP went from patient to patient introducing herself and her daughter and touching ( which I cringe thanks to the NICU mom in me) and being so nice. She sat next to Ty and asked what his diagnosis is. I told her and she was so sweet. She said she would have had no idea. That it was obvious to her that we work hard with him. Ty looked up at her and smiled and then waved at the little girl and the mom tried to get this little girls hand opened and Ty reached up and took her hand and danced with her. It was super cute..What amazing spirits they all have. *

The appointment got us in around 2:40 and only lasted about 20 minutes and we were out the door, with new appointments for botox in the works. We head out to the parking lot and head home. We stop at the grocery store for dinner and head home.

Leaving at one, getting home at 5. Day one

Tomorrow we have Physical therapy, occupational therapy and music therapy. I have to take the rest of my driving test. And some time find a way to get BACK into the dentist. The root canal apparently doesn't work because my tooth is killing me.

Wednesday we are having to head back into the city with a prescription for titanium braces and smo's. And to make it to our new speech time. Dallas also goes into Scottsdale but we only have one car. And I need to make it into the chiropractor.

Thursday is kinda a lazier day. But is our anniversary. So with all our week busy busy we are hoping to get out and have a dinner or something before we embark on our vacations. Did I mention I have to pack for 2 and make sure #3 is all set to go before Ty and I leave the valley of the sun......

Oh it makes me tired.

But 3.5 days to go. Weather better stay lower than 100......

UTAH (and San Fran for D) here we come...

Yes, he is ok!

Whenever there is a surgery and his little brain is involved I always wonder about what personality changes or "damage" is or has been done. If this is the time that we will see a change in personality.

Well, to put every one's worries at ease... Ty is doing great.

Here are some photos of the last few days. It is easier viewed than to find words.

This is Ty the morning after we got home. He had a good night in his own bed and woke up a little sore but happy. I love his face!

We have found him on the couch a lot. He is a monkey and climbs up on it. But he does sit down and just hang. It is so cute to come in on him just sitting and singing.

After we got home from Therapy today Ty was in singing songs with his dad. Seriously, how could you not fall in love with this face.

He has not let that balloon out of his site He loves it.

What kid doesn't love Thomas. Though he doesn't love him as much as Barney, Thomas is a new fixture in our house.

Even Thomas needs kisses.

A few exciting things that we have noticed. First is his eating. He has increased his appetite ten fold. it has slowed down a lot but when he is hungry he is HUNGRY right now. Just like he was a baby. Like zero to STARVING.

Second, is his babbling and signing. Ty signed sleep and pointed to a blanket in Dallas car today when he was upset. He pointed to the store we were at and signed food. He ate when we got in there as well. He babbles all day and he sings so much. Meaning he actually tries and mimics the sounds that they make and if he can't get them just right he makes sounds that sound like the sound. ( that is a lot of the word sound.. but it I hope it makes sense.)

We are very proud of him and very proud of how brave he is.

Honestly, Miracles Happen....

What we do in Therapy

I realized that a lot of people out there have no idea what we do for therapy. I have never really posted photos of his newest therapies and what we do there.

We get PT ( physical therapy), OT ( occupational), and music therapy. We are currently on a waiting list for Speech. The speech person is going on maternity leave in a few weeks so they are not taking any more kids. These therapies are in addition to the time he gets with therapy at school. He gets all of the above with school ( minus the one on one music) He gets circle time/singing with the preschool.

We have PT and OT on the same day. We are going to try and combine some of our efforts because he is not having it the last our of therapy. We just started with this OT so we are trying hard to get use to all the changes.

OT we are working on him using his arms equally. He has a tendency to use his right over his left. He also can't fully straighten his arms above his head. He can't touch his hands to his shoulders. He knows what each part of his body is but he has too tight of muscles to do it.

He also is working on shapes, colors and manipulating objects ( like puzzles, or shape sorters or stacking.)

He LOVES LOVES the swing at the OT and it chills him RIGHT OUT! We are working on me slowly letting him go to the therapy alone. Right now I sit in the corner and read a book.

( The pictures are not GREAT but it just gives everyone and idea what we do there)

PT is with Rachel. Miss Rachel has been our therapist for awhile. She is working on his Gross motor skills. Skills like walking and stretching. She introduced him to the ball pit, but he was having nothing to do with it. It took several months ( OK like six) for him to decide that it is OK.

(What great form huh!)

This last photo he is on a balance beam. We are trying to get him to put his feet correctly and it teaches him to bend his legs correctly.

Rachel is working with Ty to stretch his hamstrings and help his ankles and feet have better support. We stretch A LOT!

We have music therapy. We have only been once because of scheduling conflicts and stuff. What the music therapy does is it gives him one on one time with songs and instruments to increase his ability to speak and communicate. He LOVES the songs so this was a great choice. We think this will help him a lot and can't wait to keep going.




Some of the other things that music therapy will do is also help him with his hands, help him stretch and combine any other goals we have.

All these activities take a lot of effort for Tyler. He does so well and is so good about going. We love our therapists and all the time they put in. It is something we know he needs.

As a plus Tyler is doing very, very good right now. He didn't go on the bus this morning because it never came. Well, it came late and we had already left to take him to school. He did not cry any tears today as he went to class. He also has a little girlfriend. She saves him a seat everyday ( she is 4) and she tries to kiss him. Miss A reported Tyler jabbering to her several times and she also reported that his girlfriend really takes care of him. Miss A also said that Tyler is finally starting to show his true colors and spent the recess time Laughing. Sounds just like Tyler.

Tyler... the womanizer already. Yikes!

The week in random off the wall fragmented sentences!

It was a good week. Yet at the same time I felt very overwhelmed. Some days I just don't know what else there is for me to do to help Tyler.

When I get overwhelmed I tend to avoid all appointments. I cancel therapy and would rather just hibernate in my house. Although the reasons I feel overwhelmed would be benefited from therapy that is the first thing that goes. This week I made EVERY SINGLE APPOINTMENT.

One purpose of this week was getting Tyler use to a new therapy schedule. We added Music therapy and was really excited to start it. We added OT on the same day as PT and Ty made some awesome advances. He finally got into the ball pit. It has taken the kid six months to finally get in. He loves the balls in their but wouldn't get IN! He had a blast on the swing and did very well in the OT appointment. Soon I will try and leave him there and not let him play off the mommy nerves ( you know.. the one that makes people stop when whining and crying is involved)

When music therapy came around we showed up on time but SRP ( Salt river project.. utility company) knocked all the power out in Gilbert. We sat for awhile and waited but instead got rescheduled. Guess we will see what fun it is next week.

I am wondering what the next step is for us?

Ty has few words yet understands all we say. He communicates but the word factor is getting us very frustrated.

He is getting heavy. Not like he is getting overweight we better stop feeding him heavy, but heavy like he is 3 and we are still packing him like he was an infant. At some point we are going to have to decide how to proceed with our ever growing child who hates to walk.

He needs AFO's/ SMO's and possibly botox or other alternative therapy yet we have no doc following him in that department and have no way to find out how to get one.

Where do we go from here?

On a happy note. He is having so much fun. We love him and do hope to see him progress soon. School break is coming to a close and hope to at least visit a little pumpkin patch.

We did get the little Tyke a Halloween costume.

Oh and Ty's crib is on recall. Nice huh. I can't find the model number on his crib in order to take it back. It makes me nervous. Guess we are getting a new bed regardless... Oh and the company that makes it is out of business.

With preschool on the horizon ( we start in September) I am terrified to go and find out that we are horribly "delayed." While it doesn't shock me at all that he is delayed we tend to only notice the obvious delays when it comes down to everyday things. This is NOT to say that we focus on his delays but sometimes they are way more obvious and sometimes it is bothersome.

So I found this checklist. While I HATE these and always have even in my classes, it did give me a good idea of where we might stand ( I hope!)

15-30 months
Does your baby point or ask for things she wants? Yes
Does your baby help with dressing by putting his arm in the sleeve of a shirt? Yes and if you are lucky he will start taking it off and even takes off his "bum" ( aka diaper)
Does your baby say any words besides "Mama" or "Dada"? um Kinda. He still doesn't really say words ( one skill we "notice")
Does your baby point to familiar objects when you name them? Yes, especially big purple dinosaurs
Does your baby scribble on paper using crayons or pencils? walls and sidewalks too!
Does your baby walk by herself? um define "self" ( one we obviously notice. But he does use his walker and does walk on his own)

Does your child drink from a cup and use a spoon? Cup if I let him spoon sometimes but yes
Does your child say words to tell you what he wants? he uses gestures because he doesn't talk yet
Does your child like to put things in and take things out of containers? All day
Does your child like to look at books and turn pages by herself? yes

Does your child imitate housework? yes
Does your child kick a large ball? He doesn't really stand up fully on his own but with us holding his hands he can kick.
Does your child ask for items by name? since he can't talk no.
Does your child recognize familiar pictures-knows if it's upside down? Yep

2 year old stuff:

Does your child turn the pages of a book, one at a time? yep
Does your child wash and dry her hands? yep
Has your child begun to ask to go to the bathroom? I wish
Does your child sometimes use 3 word sentences (like "I want cookie")? um no talking
Does your child use pronouns like "I", "you", and "me"? He uses me but just points to "me" when asked
Can your child jump from a bottom step? not alone.
By 36 months old (3 years old):
Does your child walk up stairs? He can get up and down stairs with no help
Does your child stand momentarily on one foot? yes.. flamingo
Does your child ride a tricycle? um no
Does your child feed himself? finger foods and tries with a spoon and fork. Mom doesn't want to clean it up so I guess we should work on that
Does your child verbalize toilet needs? um no but can "wipe" his own bum

We have a few No's but remembering that Ty should be 3 in December and not September I would say we are doing OK!

Good vibes for mom as we transition... Maybe my therapist wants to see me again!

I am slowly losing it!

I am trying so hard to keep up the facade. To keep the positive. To keep the pace with all we have to do.

I am tired.

We were doing PT 3 times a week for water therapy, regular PT, Speech once a week, OT and eye therapy. We have cut the water therapy down but we still do the others. With me working at night part time and the time of the day Ty is up for the day I am tired.

Although I am "taking medication" I am now wondering if it is working correctly. On Tuesday I literally couldn't keep my eyes open. I have no motivation and my ability to multi task and keep my appointments straight and make it to my appointments is slowly NOT working. I wonder what happened to the very put together mom that was happy, cleaned, cooked and knew where and when we were suppose to be somewhere and never missed.

I sure hope we find her soon!!!

Heart Broken

I am just sick tonight. Not physically sick but heart sick. As you all know we started water therapy and have been attending 3 days a week. When we first got the approval it was for 60 visits. We got there today and our insurance has decided that having a diagnosis for CP makes it so Tyler has a chronic condition that can't be "fixed" so they will no longer pay for therapy. He gets 2 more visits and then we have none.

They (insurance) have denied Tyler AFO's for his feet saying they were cosmetic. They are not needed. I found a way to get them. I found a way.....

When we ordered a walker I thought for sure they would cover it. After all they will buy a wheelchair. But nope. Not covered. Why? It is considered a "gait trainer" meaning it is to help him learn to walk. And yep, our insurance denied it. Saying they don't pay for things like that but we can have a wheelchair it is covered. So, I found a way.

Now comes this. The therapy is working. He has done some major changing on how is feet are positioning. He is more stable. He takes more steps. And now they are telling me that because of a ugly ugly word he has no chance. He is a Little boy. Why deny him the world.

So I guess I do what I have done all along. Find a way. Work more hours, spend less money, something to pay for hope. I found hope in this new therapy. Not frustration but a glimpse of what he can do. I saw progress that we hadn't seen in a year.


But ... they will buy him a wheelchair!


Can't a mom dream... I just want my son to walk!

Water Therapy

Ty started water therapy on Monday. It was so much fun. I am surprised he didn't pass out with excitement. I will be getting some pictures when I get him a little more use to the therapy part.

When we first got in he screamed. But when he was convinced it was OK he LOVED and would scream a happy scream the whole rest of the hour. He hadn't had a nap so he was more than done when we finished but it looks like we have hopefully found something to help.

We will be doing this therapy 3 times a week for now and still have his regular PT on Friday. We are hoping that by increasing his therapy we are helping him advance a little faster. At least it is doing something that is good for him and is pretty fun to!!

Updates and a few pictures...

I think I have chilled out from my last "outburst" and can calmly and rationally express my frustrations!



Yes, my car is back in Avondale. The wonderful city that it is! Here is the story ( please pull up your pillow and get comfy) As we were leaving the first time the General Manager said that IF there were EVER anything wrong with my car they would tow it to and from in order to take care of things. Well, fast forward to less than 8 days after they fix it and I am calling them to come and get it.



Monday morning we drove to the foundation for blind children ( FBC) and after it was over we headed back home. As we got in I turned on the air conditioner and NOTHING. Not a thing. It wablowing warm air. Lucky for me I had put Ty's milk in the fridge so it was cold and it was able to keep him pretty cool. When he gets hot.. he pukes. And he pukes massive quantities. During the 15 minute drive home it was still blowing out warm air. I get home LIVID because outside it is cooler than my car but we can't drive with the windows down on a 6 lane freeway. Not a good idea.



Anyway, I get home and call the car place. Let them know that they need to come and get my car and a rental needs to be in place. Not because I am mean, but because I have a warranty. We bought the car we did for a reason. Because of my excellent luck in cars it was determined that a warranty vehicle was the way to go.



For the next several hours we work on getting a rental. Which we all know is just a car that you don't really want to drive. Well, I got a lovely PT cruiser. While most of.. ok some of you might think that was cool. It isn't. I think they are ugly and look worse than a pregnant roller skate. They are not very comfortable and the car seat doesn't fit that great. But it is a car and we have LOTS of appointments so it will do.



Car gets towed to Avondale. It is now Friday and I just got a call from Corporate Suzuki wondering how I am enjoying my vehicle now that I have it back. I wonder in my head if they have lost my car and I will be stuck paying 13 bucks a day for insurance on a car that I don't want but am required to pay the insurance myself on. I proceed to tell the uninterested lady ( Why do they hire people to call and find out how your "experience" was who don't really care.. and it shows they don't care) that I don't have my car back and that no one from the dealer has even called to let me know what is wrong with my car or how long it is going to take. ( see above comment on how it shows she doesn't care) She then tells me she will just " make a note" to call me back when she thinks my car is done. Not " let me call and see what is going on with your car and why we show it is closed out" but I will call you at a different time.



I just got off with the Car people. They say that while they were testing my air conditioner the check engine light came on and so there are more things wrong with it. I think I might just need to take a trip to the rental car place and take off the paid insurance. 13 bucks isn't a big deal.. but at this point who knows how long I will be paying it.

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As far as my mom goes. Personal boundaries haven't ever really been her finest point. In her defense though, until I got married I didn't see that they were really needed. Now as an adult who is married with a child I see the need for them. In fact I see a need for them a great deal while dealing with a child with "extra" needs. Sometimes I need a little more empathy and a little more listening, than fixing and drama.



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Now for the "other stuff"



While it looks like I am fully recovered from having surgery I have proceeded to become VERY acquainted with my toilet. I got some sort of stomach bug and took a few days to feel "myself ", and Ty got it so my carpet is now back to clean, and diapers are not as many. THEN ( yes there is more!!) I got a cold. Ty had one but not this bad, he still periodically coughs and has a rough night but he seems to be on the upswing. I am coughing like a mad man and have had some rough nights. But in 5-7 days I should be back to myself.



Ty was accepted into water therapy. He will be going there a few times a week so I guess I need to lose wight overnight AND buy a new swim suit soon!! We still go and have other therapy so we are looking forward to seeing some NEW and improved milestones soon!!



We went "swimming" outside yesterday and took some pictures and it was cold. the water didn't come out warm yet and it was a little cold for the Bubba. Pictures were cute but when it gets warmer we will definitely be out there swimming in the Arizona sun!



As I was getting ready for work Ty came in and snuck out the toothpaste. He for some reason LOVES it and it proceeded to get it EVERYWHERE. Did I mention he had JUST GOTTEN OUT OF THE SHOWER. I took pictures but as a warning.. he is not wearing a diaper!!!!!