Therapy and Therapy

We have finally gotten a grove down with all of this rehab stuff. To say that it is expensive and hard is far beyond an understatement. It might be the understatement of the month!

While having a major issue with scheduling at the rehab department and having to pull a momma bear out of her cage, we got a few things back on track.

So PCH has several locations around the Valley. One is in the East Valley and really close to our house. When we started this incredible hard journey we had to be open and honest with the doctor about our willingness to rehabilitate. So we basically had to contract to make our appointments and do the time to make the most of our surgery. We had 3 times a week the first month and then down to 2 times a week the second month.  When we were getting close to cast off time I called and made sure we had a place in the East Valley and they said it was fine and no big deal. Call when we had an exact date. I called and low and behold they were full.

SHOCKER- NOPE

So we took what we could and have been driving to downtown for the last month. 3 times a week means we fill up every single week. We miss school and we are late coming home because traffic is TOUGH in the PHX! They also cancelled ALL the time. So the momma bear part was me freaking out because we were going WEEKS in-between. WEEKS! That was not what was agreed on in office. Our therapist is also Dr.A's therapist for her CP clinic so I told them to take it up with her. Low and behold, our therapist got a bit of over time!

But it is hard work. It's a lot of work getting him into the hospital. He has finally started getting heavier over the summer and is much longer than he was. So our ability to just hoist him around is MUCH harder. But he has to work A LOT harder to get moving.

He works his core muscles more than he ever has and he mostly does a good job. Very little complaining. I am sure it doesn't hurt that we have had to start a bribing system. He knows he can ear $2 a therapy session. If he meltdowns at home, or fights or won't do his work, he has to give his money back. He has to pay his tithing out of the money and he has made sure that he counts it each week because he is working to buy a video game ( which he got on Friday!) So with 3 appointments in PHX and 2 appointments at home he can make a pretty penny.

He has done really well and is walking a lot more slowly but more independently. He is also a speed demon when he wants to be. His gait is looking good with his braces on but still pretty similar with them off.

Total kudos to Grayson who spends all 5 of those appointments trying to stay busy by himself. I do what I can to entertain him and Ty's therapist do a lot of including. He also earns a few bucks here and there or a new toy to play with. It helps us donate a bunch to the therapy places that we go to.

Grayson is So SO stinking funny at these things sometimes! Ty spends 5 full minutes on the treadmill. We need to get one of these for our house. He could use it at regular therapy at home!

Photography by Grayson on that one!

Playing Tic tac toe- But they don't understand the rules. Between each turn we have to keep our hands up while on our knees. Tough when you have no tummy muscles. 

Crawling backwards to pick up pieces for the ball runner we were putting together. After it is all done we played for a bit then finished off with a game of basketball. 

Tyler and Menaka. He was telling her a story. He lays on his back and has to stretch the medicine ball all the way to the floor then he can throw it. Sometimes he has a lot to say. But mostly we are just so proud of how hard he works. We are so proud of Grayson for being so grown up about sharing his time. But mostly we are thankful for the people who have helped us get to where we are.


Also, Troop Tyler or Team Tyler is raising money for the Hydrocephalus awareness walk here in the Phoenix Valley. It is being held October 24th in Gilbert Arizona.
Our walk page is HERE! Please sponsor us. You do not have to walk to sponsor. You can pay by check, cash or on the site. Walk for a cure is fully funding research. The Staff at HA is small and they do not make a lot of money. It truly does go to find a cure!! 

I fall in love

I fall in love DAILY.

Deeper and deeper.

Even more so in the last 18 weeks.

The last few months I have realized that this is the last time of our lives that it will be just him. No other siblings. Just him. It makes it bitter sweet really.

The cute stuff he does makes my love grows deeper and deeper and makes me realize everything that he does is even more amazing because he is such a Miracle.

The last few weeks we have realized just how much he soaks in. He is so SMART. He is very attentive and very willing to learn. Over a year ago, when he didn't talk, we started making him say prayers at night. We would pray with him around us before that but this was his time.

As his words and vocabulary exploded his prayers are all his. He says what he wants and he does what he wants in them. So sometimes mom and dad don't get blessed but what he feels gets said.

Today he was playing with Grayson's blanket he was taking his "give the mouse a cookie book" and covering it up with the blanket and telling the Mouse book to go night night. Then it escalated and he asked me to help him upstairs.

We went upstairs and he took the book to his "bigger bed" and put the book to bed. He sat right next to the book and said "OK now fold your arms" and he proceeded to help the mouse book say a prayer.

It went something like this.

T: Fold your arms mouse

T: Heavenly Father, thank you for the mouse. Thank you for the mommy to read us the mouse book. In the name of Jesus Christ Amen

He covers the book up and gives it a kiss. As he walks out he tells the book. I will be right out here to check on you. ( Dallas tells him that every night) and Ty waited.

He went back in and took the book off the bed and proceeded to do it in ALL of our beds. He is so sweet. His little prayers are always tear jerkers for us.

He is so thoughtful when it comes to saying I am sorry. Or asking if you are OK. He is so thoughtful in wanting to help.

He comes home off the bus telling us all about his day.

I LOVE this kid. I am so thankful that he is mine. He puts a smile on my face, he filled a void I didn't know was there and he has made a space in my heart that I don't want him to leave. It has also made me realize there is a space in my heart for another one! For that I will be thankful for.

So yep! I fall in love. With a blonde haired, blue eyed, dirty faced and gross hands, still not potty trained 5 year old. He is my life. He is my baby. He will always be my best bud.

Day of Thanks

What a day of reflection and Thanksgiving. I can't fully express my thoughts tonight to truly show what I feel. But I want to try. At least for my family to read and me to remember.

I am SO thankful for Dallas. He has changed my whole life. From the first day that he loved me he changed me. Nothing beats knowing everyday that he loves me and that he TELLS me. He tells me every day I am beautiful and because he loves me so well I feel it.

I am thankful that he is a good dad. That he loves Tyler and is such a support to both of us. He is very encouraging and really wants what is best for him. He works so hard for our family and he is my best friend.

I am so thankful for Tyler. So many amazing things have happened since he came into our family. He is the MOST most amazing special spirit I know. He works so hard to do the things that I take for granted. He has accomplished more and over come more in his 4 years than I and most people ever have. In the last 2 months he has soared with his language and communication. Because of that, other people are seeing just how smart he is. He makes me smile EVERY DAY. He has the most contagious laugh and the most gigantic spirit.

I am thankful for what he has become and look forward to the things he will accomplish. I am thankful for the team of doctors we have that work so hard to get him being his best and so thankful for the team of therapists that help him on his way.

Which leads me to my next thankful. I am thankful for my family and for the support that they have offered. Though sometimes we are at odds with what we think others should do overall its all about Family. It is about the caring and supporting of each other regardless of the circumstances.

I am thankful for Dallas' family. I am thankful for his parents raising such a great person. I am thankful for their support and love. I am hoping as we continue through the year that things will keep getting better and we can continue to be thankful for each other.

I am thankful for my friends. I have some great friends that are so supportive. I am thankful for how much they care about me and my family. I am thankful for those who have come into my life, if even for a season, I have learned from all of them.

Last but not least I am thankful for my faith and for the Savior. Learning and understanding the atonement of Jesus Christ and doing my best to live up to what I have been taught. Because of my Savior I have all the other things above.

Because of the of that I am the luckiest Girl in the entire world.

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.

More weekend.

Friday night we had a lazy night at home. Saturday dad had a hard time sleeping the night before and had a late night. We let him sleep as much as possible. We ran errands together as a family. We haven't been able to do that in a LONG time. We loved it. We mailed off Max's present ( Chantel.. I will email you with the tracking number. It should be there before Friday.. so so sorry we are late)We had to buy a new toilet seat ( a nancyism to come) and took back a few presents. ( I didn't do so hot giving to Dallas) We then used a Christmas present and ate at Red Lobster. Ty was on his not eating streak. But we had a good time anyway.

Sunday was Ty's first day in Sunbeams. He did really well and didn't even cry. He looks so cute and so grown up. He did take his Barney book to class. He was one of the most behaved kids there. As we were sitting in church I could hear coughing all around me. The preemie mom in me cringed. I could feel the germs.. eck!!

Sunday was a great day and Ty went to bed quickly. He slept till 7 am this morning and is now throwing fit after fit. Guess he is more tired than we thought.


Told you he had the Ears. You can also see his gorgeous dental work we had done right before Christmas. Still cute even if a tooth is gone.
Figuring out how to pour when you arms don't work that way was a big task for him but he LOVES it. He loves having water poured on him AND he loves jumping in the water..
Ty laying down after church. Isn't he cute. He did so good at sunbeams. I was so proud of him.
My favorite! Isn't he cute! That face gets me every time.