A tale of FREE health care

At the ripe old age of 1, Tyler was admitted to a national Cerebral Palsy clinic where we were able to get physical therapy, Occupational therapy and speech all to work with him above and beyond what he received with Early Intervention. We saw the CP docs, orthopedics, developmental pediatrician and lots of interns and we were put on a very low key treatment plan. ( which at the time was all we needed). But a good one none the less. At a VERY affordable price.... FREE!

We moved to Arizona. Low and behold this program had an outreach clinic and we were set up with some amazing Dr's and nurses that would travel down and see HUNDREDS of patients in a short amount of time. ( I will have to explain Arizona's way of insurance/CRS and other "forms" of therapy on another post. YES, we did get long term care, YES we did walk away from it to move to Utah because we felt that is where we were suppose to be and yes... We miss it horribly.. ARIZONA, not just the insurance!)

When it came to time to get a little more aggressive we needed to come back to Utah for the surgeons and rehab docs. This trip was planned well and amazingly PAID in FULL and we were able to fly to Utah and spend some time with our family before the trip ended. We also got so MUCH information to chew on. At the time we opted to go with the less aggressive form and try botox. It didn't work and the more aggressive form was the way to go.

Moving back to Utah we get in much more regularly. We see a PT, OT, Speech, orthopedic doc, orthotitcs, developmental ped ( which I am not sure I like a lot) and of course Dr. Gooch. We have a whole team that met us every three to six months depending where we are in our treatment. We see our therapists sometimes several times a week.

How much does this cost us? How much do our co pays come to and the 80/20 portion? What about when we reach our max 12 a year? ( yes insurance only gives you 12 appointments a year!)Do we get limited speech appointments?

The big answer is NO we don't. It is FREE!!!!!!

We get what is best for the child. What is best for Tyler is to keep going. To keep being rehabilitated. To keep pushing for what is BEST for him, regardless of the cost!

So how does this Marvelous plan work?

Perfectly~

It works perfectly because Tyler is a Shriner's Kid.

Shriner's hospital is a non profit organization that is run by donations and by the Shriner's religious organization. You must have a qualifying condition in order to be accepted as a Shriner's kid. You can easily fill out an application and see if you qualify. Any orthopedic or neurological conditions that affect movement and some have burn centers qualify you for this care. They also do research in several of the hospitals.

There are 22 hospitals across the Country. Children from other countries are also given chances to come to Shriner's FOR FREE to get the care they need as long as the condition is treatable.

The care that we get at Shriner's is UNBELIEVABLE. Any time you are there for a procedure there is a care kit on your bed. It includes a stuffed animal ( generally from build a bear or Kohls kids care) a blanket and the toiletries you will need for your stay. There are less patients per nurse so the care is amazing!

Sadly, in 2009 when the economy went down the tubes, so did the endowment for the Shriner's hospital. In order to keep ALL the hospitals running they did something they never thought they would have to do. They had to start charging. However, they aren't charging the patients but charging the insurance companies while waiving the co pays and any remaining balance to the children and their family. Any service that the insurance company would or could deny coverage the hospital will still do The head of Shriners said," We will always take care of children the best we can."

Recently, Utah's Shriner's hospital had to start taking the insurance from the patients. They are working to become preferred providers since the only other "competition" is PCMC and to get contracts with those they need to work with. ( which is funny because EVERY doctor that works at the Shriner's works at PCMC and we have seen them in their individual office at PCMC for full price) They are working to get the portion that the insurance would pay in order to help offset the costs of care.

I am writing this for informational purposes and also to see if there is anyone out there that would like to experience the Shriner's for yourself and would like to attend a therapy session there. We would LOVE to be able to do a service project to provide something to the wonderful people who work there that provide this care for free. Or, if you feel the need to want to donate to them please do so in Tyler's name. He would MUCH appreciate it. Because of their hard work he might even get a big boy bike next summer!

If you are interested in a tour, a time to see them in action or just to feel of the spirit of compassion in a hospital PLEASE go see the Shriner's.

As a mom of a Shriner's kid, I cannot thank them enough for the love, support and encouragement we get from them along with the support of knowing that they have everything there that will help Tyler.

Please if you can donate, even a dollar or a stuff animal or something. A little goes a LONG way!

A whitty post about Therapy

Ty attends therapy in Salt Lake City at the Shriner's Hospital EVERY single Monday. We usually get 3 therapies but today was just 2. But today we made excellent strides in BOTH! Our incredibly expensive health insurance won't give us but 12 visits a YEAR for therapy so we need the other "options" given at Shriner's.

The bad part of that, I don't LOVE his speech. But will take it because, well, we don't SPEAK! He struggles with participating with her and he doesn't like her to touch him.

He did really well with his transition. So I really felt that today was going to be a good session with her. I went in with him initially to show her the Alphabet song he sings and so that she can hear the vowel sounds we are working really really hard on. I always walk away with her saying " That's nice but he is is missing some key points here." Like I don't realize he is not getting "THE WHOLE WORD"

Tyler wanted to play the games she had set out and he really likes the Barney match game. He still won't let her touch him to have her show him how the word sounds so he will whine as he plays but overall he is doing really well.

OT transition was the best we have had. Chris really plays into his sensory issues. So he gets LOTS of swing time, jumping and that makes it easier for him to sit down at the desk to do his fine motor skills. He did great today.

Today was a good therapy day. They don't always go that way. Savoring the days that DO go that way!

The results are in

Our sleep study results and follow up was this past week. I have decided that I really like this doc a lot. She was very honest. But first, a little of the first of the week.

On Sunday Dallas woke up with a horrible sore throat. I decided to take Tyler out of the house for a few hours and let Dallas sleep and then we took him to the instacare AGAIN. I was really hoping that it was "nothing" and he was just feeling like crap and feeling a little stressed. But sure enough the quick strep test was positive AGAIN. I was so so mad. We just got done with Antibiotics from a week or so ago. And here we were again.

So we assumed that there was a carrier somewhere. Monday Ty and I went Christmas shopping and headed home. Got a text message from Aunt Sheena that she was not feeling well and she was heading to the doc. A hour later a text that she was positive for strep.

We learned that strep has a carrier and someone with no tonsils can't carry but can get strep. I am the ONLY person in the house that has no tonsils so we assumed it was Tyler the toot.

Tuesday we talked to ped, got scheduled for his last H1n1 shot and we thought we would test him to see if it was him. He isn't or wasn't sick and we waited for the rapid strep test. Guess who was positive? Yep toot face himself.

2 weeks of antibiotics to see if we can't kill off the germ and off we went. For the first time in his LIFE he will actually take it without throwing up. Did you know they can flavor augmentin strawberry?

Its seems his appetite has returned so who knows maybe he was not feeling well. But he has been much better.

His sleep study results came back. And the honest doc said, he doesn't' sleep a lot. I am sorry there isn't anything we can do.

Ok.. that was the gist of it.. The details:

Ty has awesome REM sleep the first 3rd of the night. He falls asleep great because of his sedation meds. He enters into deep sleep pretty well. Then comes his arousal. Around 3 am he starts arousing from periodic limb movment ( about 5 an hour) and ( get this) obstructive sleep apnea.( he wakes up about 8 times an hour with apnea) At first she thought it was his tonsils but she was not convinced after seeing the rest of the results. He wakes up when he can't breathe. He then comes looking for mom. She thinks that his air way is floppy. That taking out his tonsils will be like taking out part of the dry wall. She really feels like it would be a bad idea. She would really like him off his sleeping meds but at the same time anything she gives him will be metabolized in his liver. He has to have meds or he would be up all night.

He gets generally around 440 minutes of sleep that is about 7 hours. A kid his age should be sleeping between 10-12 hours to help him grow and develop. She is glad we have been putting him in our bed because apparently hearing someone else breathe can keep a kid alive.

I was horrified to see that I was sedating my child and he can't breathe. Here we are sedating and suppressing his breathing and yet he still doesn't sleep. I am at a loss but thankful he has been safe.

So we are getting an ENT consult, not for sure taking out his tonsils but getting them looked at. Seeing if we can make him safer. We are letting him out grow his dose and see if there is anything else we can do. We are going to be checking with his neurosurgeon about a ridge on his head that makes me a little nervous and make sure that his little cute head is still growing. I will be devastated if we are having more issues with his head growth.

Next week ( OK Wednesday) we go in for his phenol shots and serial casting. It was pushed back a day. My tummy is in knots till we get it done. Lots of prayers for Bubba!!

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Do you feel like you are going crazy!?

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

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

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

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

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

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

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

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

The Purpose of our trip - Tuesday

I have so many emotions about our trip to Shriner's hospital. I have so many thoughts about Shriner's in general. I can't always find the words to describe it just yet. I will do my best.

The whole purpose of out Trip to Utah was to take Tyler to Shriner's hospital. The appointment was to get a consult and possible procedure to help his legs and muscles. The purpose was and is to improve his quality of life and to make him walk.

Rewind to December 23rd:

After 9 months of waiting we got moved up to only having to wait six months and we were able to see and meet Dr. Kwasnica. We discussed botox and other options on how to make him move better and avoid more problems later on.

We told her about our consult for Phenyl and she agreed we should do it. We should get another opinion and that she was more than happy to work with Dr. Gooch at Shriner's.

As we prepared to go we went to the inter net and got as much information as we could. I have exhausted poor google search. I have exhausted my head, heart and knees. I have shared with Dallas, we have shared together and we have prayed SO hard to get the answer to what we need to do with and for Tyler.

The day of the appointment was anxiety filled for me. I had a horrible night the night before and was up till way past a decent hour to help me have a clear head. I was frustrated and tired and more anxious than I could describe.

We got to Shriner's and headed in to check in. Because we had to schedule the procedure from out of state we had to be admitted as a patient and be prepared to go into surgery for the procedure and then meet with the doc for a few minutes before.

Ty and I fell asleep waiting. All I could hear in my head was words that I was going to make the wrong choice and how grateful I was that Dallas was also there to help me. I was also so thankful for a Heavenly Father who I called on Heavily that day.

Dr. Gooch came in and we talked and she started looking at Ty's muscles and legs and feet. She made our decision easy. She was not convinced that at this time he needed Phenyl. She felt that botox was the right way to go right now. She was very impressed with Tyler. She felt that his deformed feet could possibly be fixed with the botox and bracing. She also said that he should be an independent walker. Because of his muscle tone now he may have a hard time walking long distances but he is doing VERY well.

We were then released as an impatient ( about an hour later) and we were headed to Grandma Brown's house.

In the hour of waiting and being released Dallas waited for the nurse and I experienced more of the wonderful spirit of Shriner's. We went to the play area of the hospital. 2 boys who had been patients for several years were there playing basketball. Ty was in heaven. He went over and the 2 boys were so cute with Tyler. They got him a ball and let him throw it at the basket. He would clap when they would make it. He would follow one of them around.

Ty played in the car there and on the motorcycle. He laughed and played.

I cried.

There is such a spirit there. There was a spirit of inclusion from the kids. A camaraderie from the parents and the idea of love from EVERY single person who donates to that place.

The amount of love that is poured into that building is immeasurable. The amount of love and dedication is more than I can imagine. The spirit of charity and care is inspiring and the children who are served there are the luckiest kids in the world.

I know that some day Tyler will have a easier time walking. That the medication and the treatments are no a cure but a way to help him have an easier life. This couldn't be done without Shriner's.

If you ever feel inclined to donate or to give to a good cause please think of Shriner's and their amazing care.

"The reason charity never fails and the reason charity is greater than even the most significant acts of goodness he cited is that charity, “the pure love of Christ” (), is not an act but a condition or state of being. Charity is something one becomes." Elder Dallin H Oaks

Because of their true Charity they have become something. I pray for them and thank them everyday of my life!

The upper floor where parents wait for thier cildren. And the children play as they are waiting for procedures etc.

Tyler playing on the girls motor bike but didn't mind it was pink.

Only car he will be driving for a long time if not EVER. He was having a blast scooting it aross the floor and honking the horn.

Ty happy as could be in the best places in the world. They can feel the spirit there.

Tyler Playing ball

Ty playing ball with the other boys.

The Aquarium and other random doings

Part 2 of our trip is up here in Salt Lake visiting with Dallas' family and then our trip up to Shriners tomorrow. Last night we got Dallas from the airport and stayed the night at his parents house.

Today we went to the aquarium. We had a great time and Ty was able to see and touch new and interesting things. He was such a good kid and was able to touch a star fish. He played in the water with the sting rays but was not able to get all the way down to touch them. But he still had a good time in the water.

The aquarium

We also had Dallas birthday dinner at his favorite restaurant here in Salt Lake. We had a few friends that couldn't make it but were so SO happy that Erin was able to come. It was the first time we had met little Issac and it was great to see her there. Her and her husband are seriously some of the most amazing people I have ever met. They are the most selfless and honest and most sincere people. I truly appreciate her and her friendship and am so excited for them to have a new baby.

Dallas and his sisters

Tyler and Issac. If we lived close by I KNOW they would be best Buds!

How much trouble could they really get in.. Can you only imagine!?

Erin and Issac

The crew

Tomorrow is a big day for us. I am anxious, nervous and excited to see what we can do for Tyler. I hope that he understands that we are doing it for him and that we just want him to be the best Tyler and prevent any other things from happening.

Shriners Hospital

If I had a million dollars I would donate to Shriner's hospital. I posted about our experience last year and found this year to be filled with the same Spirit. It was amazing and looking back I can't believe how well Tyler is doing and how much he has grown.

( That was Ty last year and this is Ty this year not at Shriner's since we were busy)

We made our appointment last year and waited for the card in the mail. It never came. Apparently after we were casted for our AFO's the appointment was about 3 months after our original so Rudy canceled it for us and rescheduled.

When we outgrew and some how became the Houdini of Brett's practice ( Ty is the first kid in Brett's career to find a way out of his braces) we were looking at getting the titanium braces that I talked about a few months ago. The problem that comes into play is the cost and the fact that no one pays for them.

At the appointment we were able to show everyone how well Ty walks and how well he is doing. We met with a NP ( nurse practitioner) and talked with her about our options. She was very nice and Ty was nice enough to tell her "no no" as she touched his feet and moved his legs around. We showed her his feet and how they are starting to turn in and she got excited. Not excited that they turn in but because he may be a prime candidate for some different types of treatment used in Cerebral Palsy.

The Doctor came in and Ty also told her "no no" and she continued to see how much range of motion he had in his ankles and then asked if he followed directions to which I told her he did. She asked him to walk up the hall. He got down from his chair and headed out the door. You never have to ask him twice to leave a doctors office. He was off and into the hall running if you will) and EVERYONE was out looking at him. He was so cute. Brett and Barb came out and were smiling like crazy.

There are several options that we will be looking at for Tyler in the next few months. We are excited to hear what the specialists here in Phoenix say and also the ones in Utah. We have a lot to digest.

* A special Thanks to Barrett and Chantel for letting me bug them. You gave me some great information along with some great links for research. It was so nice to have someone to give me the information.

And Chantel for letting me borrow him on his night off! *

Tyler getting his AFO's

Wednesday we had our appointment in Phoenix for Ty's AFO's. We took off fairly early in the day so we could run some errands. ( Ok really we went to exchange the Apple Tv that Dallas got for his birthday.... EARLY) We ate lunch and headed into Phoenix.

We got there right on time and met with the owner of the office. The office is called The orthotic specialists. He was very nice and he explained what we needed to do and watched Ty walk and crawl. Then came the hard part... The casting. Or so I thought. I brought Dallas along with me. He was so helpful and Ty LOVES his dad. He loves his dad's iPhone to. He put on a movie for him and he did so well. He didn't cry while they put them on and fussed just a tiny bit. He did so well.

We decided to do regular white ones and not decorated ones. We will get them in a week and a half.

Here are the pictures!!!


The cast is on and he is content watching Baby Einstein on his dads IPhone.



While casting his foot needed to be at a 90 degree angle. Usually isn't a problem unless he is REALLY angry or REALLY happy!!



Cutting it off... He was not sure about the scissors at all!



The end result. They will make the molds from these casts. Cool huh!



And yes... my kid is a junkie. I don't mind. It helps on those really long waiting days.


The good news is they said with the AFO's that Ty will be much more stable and his tendon should stretch quickly. They also don't think he will be in them long. We will start out only at night and move to time in the day as needed.

A special thank you to those who donate to Shriner's. If you read my blog you know my LOVE for these people. I don't think they know of their impact.

And a special thank you to Dallas. I really needed his support. Getting braces for Tyler has been really hard for me. I can't imagine doing it without him. I was so glad that he was able to come. I had a wonderful time and I am so glad that he is my husband and Ty's dad. What a great pair!!

Heaven on Earth

Only 2 places I have ever been have had the spirit of what I can only imagine heaven to be like. One is the Temple. It is calm, Serene and built with the finest workmanship on earth. No expense is spared when building a house to the Lord. When we were sealed as a family for Time and all eternity NOTHING could have made me feel closer to my Heavenly Father. Watching Tyler come in the room all big eyed made Heaven almost touchable. What a amazing experience. Something I know I can feel every time I go back.

But there is a second place. A place that is unknown to a lot of people. It is like its own little secret. When you finally find that place you walk around in awe at what you see.

We first visited this place last year. The spirit when you walk in is almost overwhelming. It is a place of healing. It is a place of absolute service. For those who have experienced the Shriner's hospital know exactly what I am talking about.

Shriner's is my other Heaven on Earth. We attended a "shrine clinic" as it is commonly referred to here in the Valley. The same spirit exists there that is at the hospital.

When we got to the door of the office building it is held in a man in his Shriner's hat opens the door. Another man is waiting to escort you into the elevator. Another man rides with you to the third floor and another man is there to help you off the elevator. The check in is women volunteers and a Shriner man. The waiting room is filled with Clowns, face painters and special kids. Most with SEVERE disabilities. Some with mild and all with a parent or guardian that is so thankful that these people exist.

The smile on some of those special kids is priceless as they leave the hall after receiving their first walker, wheelchair or AFO's and are, for the first time, feeling their first flight of freedom.

Ty did really well there today. I was so proud of him. He spent the waiting time walking up and down the waiting room ( don't worry it was large) watching the people, avoiding the clowns and winning over the hearts of every girl in the place. He pushed his stroller back and forth making everyone watching VERY tired.

The visit went well. The Doc we saw was from Salt Lake City and knew our FAVORITE doctor Marissa in Utah. He looked at Tyler and we are getting AFO's for his feet. We Will be casting for them next week. Tyler will be in them for only a short time but it should help his heel muscles and his funny walking. ( he walks heel toe instead of toe heel)

On a better and more exciting note. Tyler can stand on his own and has made several attempts ( with succeeding) in taking steps. He is on his way to being more destructive than he already is and we couldn't be happier.

Also, Ty was NOT a fan of the clowns that were there to entertain the children. He would look at them and when they came close walk around his stroller and want me to pick him up till the clown walked away. It was great.

Ty has discovered the new word NO, avoids the word Dad for some unknown reason and can tell you he loves you, blows kisses, tells you what a duck says and most recent a Dog. He hates clothes ans will take them off at any given time. He is growing fast and we are so proud of him. What a spirit these special kids are.

Also, Thanks to Grandma Brown for the new clothes for his bday. In the following pictures are one of his new outfits. They are 24 months ( I know he is big!!) but the pants are adjustable waist for our skinny fart!! Thank you!!






Thank you to all who contribute to this wonderful organization. I have and will continue to suport them. I hope in the future if anyone gets the chance to feel of the spirit of Shriner's they will appreciate the spirit of service and giving that I have felt.