4th Grade and Pre-k

WOW. I am only like a month behind.

Ok not really. But enough.

Tyler started school this year before AUGUST! It was a dream come true! His casts came off, his new braces were fitted and his clothes were purchased. We had a bunch of new shorts that he got last year at the end of the year so I put them away in hopes of not having to purchase anything. But sitting on your butt eating Totino's pizza and drinking soda and no physical exercise helped him finally pack on a pound or six. And he when we went to button them, they didn't fit!

Lucky for me, I thought ahead and had bought a size bigger in a few new ones so we were all prepared for the first day of school. Tyler went to a new school this year ( again) and had a new teacher ( again) because his other teacher was sick and so a long term substitute was hired ( again) for this poor class to be started with. So we went to meet the teacher, and LOVE the new teacher and hope she sticks around for the year. She is very accommodating and even allows soda in the room with doctors prescription. ( Even though we need one for EVERYTHING else.)

Tyler rides the bus with three kids in wheelchairs from the neighborhood this year. His chair from this summer doesn't work as a transportable chair so he can only use his stroller. He doesn't mind it so much but with the extra weight and the age of the chair, he is almost ready to upgrade a bit.

He has to get up before 7 which is a struggle in this house. No one really wants to, but I do and it isn't a huge deal. We get him on the bus, I hop in the shower and then I TRY and stay awake.

This is the first year that Tyler has not been able to stand on his own for his school pictures. No worries. I cried my eyes out because this year and summer has been SOOOOO hard. 

He has a paw patrol back pack he picked out himself. He loves it. He has a drink container that he only wants sprite in and he loves it and he loves his teachers. He loves school so far and though he has no release for the playground yet, he does have the best sensory room that they could have for him and he gets to pick one friend to go with him in there for recess instead of to the play ground. I don't mind. Inside has air-conditioning. But he has a hard time in the morning because he wants to go with everyone else. He has been allowed on the slide though. Soon a release should be faxed in.  ( Side note to any pediatricians that ever read this blog: Never laugh at a mom who is asking for a release to allow their kids to play on school playground stuff, we didn't ask to have to get one we were told. It isn't funny and it makes us want to switch docs because it makes you look like an ass)

When Ty got off the bus he told me that he had a awesome day and everything was so great and he loved his new school. 

And in awesome news, we sent Grayson back to school too. HOORAY. He goes three times a week to the same place he went last year but this year he does preschool and pre-k. So he does a curriculum and lunch to get them use to longer days and to eat their lunch at a faster pace and to actually eat at school instead of just play. He loves it and he loves his little friends and his little teacher. We love her too.

This is AFTER the whole school day because we were so excited to drop and run that I wasn't going to waste my time in that line with the crying moms. I was going to go get some more sleep! He also has a new back pack with a lunch box and it is paw patrol too. He has batman shoes that he says hurt his feet and we did not spend a fortune for school clothes and just got some new t-shirts for him. This is his current favorite, Super Why and he has a Lego shirt that says " Everything is awesome." 

He loves playing and loves his friends. Hates going to the bathroom at Miss Brittany's house and holds it ALL day. Hates the bathroom in general. Thinks everyone should love him and yet he hates us all. He yells a lot, he screams a lot and he won't sleep in his own bed. He says cute things, gives great kisses and adores his new cat. ( who thankfully has not died at the hands of Grayson, making him a sociopath) He also loves pretending to do anything and he loves Niles of Tomorrow land. 

Hooray for school! 

Thank you Nike!

Dear Nike, 


A few days ago, I opened up my Facebook to see an announcement and an amazing video of a shoe that is coming out in your newest line. From a mom of a child with Cerebral Palsy and who frequently has to purchase shoes to fit over a pair of AFO's, I was thrilled to see that you partnered with a brilliant young man, and successfully put out a pair of shoes  that was marketed to a specific  and grossly underserved niche. OK. Let's be honest, it isn't underserved, it is NOT  served.

The only shoe of it's kind is in Europe and none of them are shoes that according to Tyler. " Make me have cool dancing shoes that can play basketball." They don't have nice, fun school shoes. But, even those shoes don't have the ability to allow him to "Do it by himself."  YOU- created     independence. 
Tyler has Spastic quadreplegia cerebral palsy. That means that every limb of his body has tight muscles that don't do what they are told to do, so basically the muscle misfires. Tyler is able to walk. But the gait he had is horrible. This summer we did surgery to correct those misfiring muscles. Even with the surgery, Tyler burns as many colories as someone running a marathon. But with the other issues, he sure doesn't feed his body like a Athlete!

As a mom of a child with CP, I don't expect him to run a marathon. I don't expect him to rule the world. But I do expect him to do his best. To be HIS best. To never give up. Tyler is not a quitter. He will reach every one of those goals.

You have truly lived up to your statement

" If you have a body, you are an athlete"

A true thank you, from the bottom of this Mom's heart, 

Thank you for making a shoe that will give my

son indépendance and class and tell him he is 

just like everyone else!! 

     

Mom to the BEST KID EVER!!!

Apple Does it Again

It is no secret that we are an Apple family. In 2007 the world changed when the iPhone was announced. People may think that it is kind of a cliche' statement, but for people with disabilities a whole new world was opened up.

From Autism to blindness, this company has reached into their lives and simplified them in one way or another. When they opened the app store to developers without having the grueling approval process, the options were endless and affordable. 

For us, Tyler has limited movement in his arms, fingers and legs. So playing video games is not happening. Neither is writing. So since the iPad came out, their are plenty of apps for handicapped children and other accessories, make it so that Tyler can write and trace using his finger and use his fine motor skills to do what he can't do otherwise. 

Tyler does have games, I would be lying if I said it was strictly for educational purposes. He finds apps on his own. He works to earn money to buy apps if I refuse to purchase them. Sometimes it takes him weeks. Sometimes I just say no. But he finds what he wants. 

HE FINDS IT. 

Today the new Apple watch was announced. I rolled my eyes and thought DUMB! Then I listened to a brief ( very brief) stint of what it had to offer on 2 or 3 features. But what stole my heart. The maps! 

So get this, Google Maps will work on this watch. It will give you walking directions to where ever you want to go. Since Google maps is on the ground and has photos it can tell you when you need to turn left or right etc. But the BIGGEST: They are 2 different types of vibration. Do you have ANY idea what that means????!!!!!!!!!

A legally blind boy/man/teen/executive has made it to the big apple for a job interview, a vacation or whatever. Has the desire to walk around the city. This person has very sense going nuts with sounds, smells and visually bombarded by times square. So he puts in that he wants to go to Central park. He gets a vibration on his arm where his watch is telling him what direction to take off too. It uses 2 different vibrations. One for left and a different for left!! One last thing on his mind where he can now use his cane and other adaptive pieces of life to LIVE!!! 

I guess the answer for why I like Apple.....

It allows my son to live. To live like any other little boy. To love games on the iPad, ( since he can't play them on a gaming console) to loving books on the kindle because they enlarge as he reads the words. To Parking Mobility apps where they tell us where the closest parking spot is to events. AND gives you a way to turn in those illegal parked. 

I have high hopes that apple will make even more devices that will open the world up even more for our special kids. Maybe next... a computer driven car! 

Hurray!!

What an INSANE week. After the Spastic clinic and Baby Isaac coming I really wanted a calm and collected week. Nothing ever goes as planned. At the end of the week, after 8 months of waiting and many phone calls, reorders and mean words to insurance companies and IHC people we became the owners of a NEW Swifty stroller.

After talking to the wheel chair shop every day this week the Secretary finally talked Shane ( the wheel chair dude) into letting us get it before all the accessories are in. I was SO thankful. I really, really needed it. Ty and I had a full day planned on Saturday where it would be impossible to do without a stroller. I couldn't have been happier to get it.

When Ty got in to try it out he said "Wow. I fit." Promptly got out and went to play. We used it on our outing and it was wonderful.

Today while it was raining, we used it to get into Shriner's.

I couldn't be more thankful.

* The cost of the stroller is HUGE. Though we find it wonderful and amazing it came with a price tag of about 4 grand. Insurance does NOT cover it all. *

You are not Dr. Gooch?

Like I said in our last post we are trying to get in to our specialists so that Ty can take the ESY ( extended school year) and not regress but that we are starting him off on a better foot to PROGRESS, and not just stay the same.

So after Dr. Larsen the next day we went to PCMC and went to the Rehabilitation clinic. Sometimes they are SUPER chill and sometimes they are pissed that some things haven't been done and other times they are in the mood to just give out info and lots of praise. We had the PISSED and info people there that day.

So the ticked off part: 1) Ty is in DESPERATE need for phenol. He is REALLY bad and needs to be put back in braces that we haven't been able to get fitted for him in YEARS. He is the hardest person to fit. Part of the reason is because his poor feet are deformed from the YEARS of not having them in braces so we now have to go see his orthopedic doc and start over there. Phenol, if not done at Shriner's is COSTLY. We have to pay a hefty chunk as our portion and frankly the medical "portion" tree tapped out. The other thing is they don't want us to go further in debt over his needs because they feel it isn't fair to us. Well we will suffer the problem is, he shouldn't. The well is dried up though. So we are having to go visit someone else AGAIN about medicaid disability which NEVER ends up going in our favor.

2) Tyler is in need of an adaptive stroller. Yes, we have talked about it on the blog a MILLION and one times. Problem is, we still don't have one. We are not able to participate in many more outings until we get one. He doesn't want to have to ride he has no choice. He can walk to the best of his ability but he can't do it all of the time. The same place the "portion" for his chair is coming from is the same portion that we are tapped out of but it is still coming and we will just have to enjoy the debit. At this point it is a NECESSITY. We are out of options. I am no longer allowed to carry Tyler in any way. He MUST have this stroller. So they were ticked that we have been waiting for it since OCTOBER.

3) Tyler needs to see the spastic team. We have an appointment on May 2nd and it is 4 hours long. He will be poked, prodded, moved, stretched, stared at and talked about by a lovely team of people. They will be hoping to do a baclofen trial. The trial is to see if he is a good candidate for a pump or a Rhizotomy. If he could do the Rhizotomy he would need to be inpatient for several MONTHS... Oh did I say MONTHS.. Yes MONTHS. See where the problem is. He will need to be totally rehabilitated on his body. He will not be able to use his legs until we do the intense therapy for it. Oh the stay is NOT the problem it is the STAY and a BABY. Oh and the pump idea. Well you can't always have a pump and a shunt. If you do have a shunt and your pump gets an infection, you have a shunt infection. So wow.. our options rock.

4) Ty needs a bike. While this sounds incredibly fine we can't just go to the store and buy one. While I WISH we could, we can't. But I can't begin to tell you the tears we have when we go out with the kids and they speed off on a bike and he wants to go so bad. The tears are not just his any more. He can't ride a regular bike. So we have to find a way to get a bike for him so he can participate. Not to mention the docs WANT him on a bike. They need him to get a different muscle working in order to help when we do #3. Insurance doesn't cover this bike. ( a few thousands dollars would) but again... the well is tapped.

The lots of information part just follows up with all the we are kinda mad information they gave us. We are hoping that the stroller comes in when it is "scheduled" which is in 2 weeks. ( please do not hold your breathe. You will die) We go into Shriner's for evaluation on Monday where we are HOPING we will get on the bike list for this summer. If not Ty will not have a bike. ( that part breaks my mommy heart more than I can tell you. I want so bad for him to have a bike) The braces will be covered with our deductible at Shriner's ( yes, you now have to pay because of the lack of funding) and we will get to have some therapy there.

Up until the last few weeks when restrictions were put in place on me lifting him, I had been able to easily deal with our issues. If he wouldn't/couldn't walk that far I just picked him up and we kept going. He wants to go outside with the kids but he gets left behind because he can't get across the street safely without me close behind. He then gets left because they are on their bikes and up the road before he can even cross the street. When the tears fall my heart breaks. These are all things that should never be denied a child EVER. No matter the socioeconomic life they have a bike and walking should never be denied. But they are.

I can not buy him everything that I want to. I can no longer carry my child. I have to tell him that I am sorry he is left out. Not just because of money but because he was born to soon. It wasn't his fault. Yet he suffers the consequences every single day. My job was to protect. Now my job is to fight.

I have never been this down when it comes to cerebral palsy. But I can honestly say at this point, I hate it. I want to have something normal for this sweet deserving child.

On the funny side, we have tried super hard to teach Tyler all the docs names, what they work on and if we take medicine what color the medicine is and what it does in our body. When we go to the appointment we talk about what doc it is etc.

This particular appointment was with Beverly the NP. We LOVE her. But Ty was playing and minding his business and when she asked him to come over to her so she could touch his feet he got up SUPER close to her face and he said" Um You are NOT Dr. Gooch? Have you seen Dr. Gooch anywhere?" We busted up laughing. We told him it was going to be Beverly and he said. " Oh ok.. Sorry about that." sat down and put his feet in the air.

We do love him and his sweet spirit. He is a great kid. He is a toughy.

Is it really that hard?

In October we went to visit our Rehab doc. We ended up seeing her and the nurse practitioner. We generally see them through Shriners Cerebral Palsy clinic but they had been backed up and Dr. Gooch was not over there for a while. We hadn't had a follow up ( yep I know, bad mommy!) since our Phenol injections over the summer and knew we would be needing them again in the winter. Because we didn't get casts in the summer we really wanted them for the winter.

While we were there we talked with them about a baclofen trial, ( which we can't even talk about because we don't have extra coverage. So even though it would be WONDERFUL for the type of CP that Ty has they won't do it.) and we talked about looking into a stroller. An adaptive stroller that holds a little bit more than the 30 pounds the infant travel systems ( that we are STILL using) holds.

As soon as we were done we were sent downstairs to the medicaid office that PCMC has in the building. We filled out 7-10 pages of information, was sent to Dr. Walkers office to sign stuff saying that Tyler is INDEED disabled and that he did INDEED deserve to have medicaid D. ( Medicaid d is for disabled people and not traditional medicaid) The social worker there said it would be awhile before his application was processed but I should be getting papers in the mail.

Not long after we got home a rep from the wheelchair shop and they were working to get a stroller started for Tyler. They wanted to get it submitted before Jan.1st when our deductible starts over. We gave them our ideas of what we wanted and he said he was going to start working on it.

This was OCTOBER!

Fast forward to January. I called starting at 10 am on Tuesday. I left 4 messages on our case workers phone. 2 calls to the wheelchair shop and 2 calls to our case manager at the pediatricians office.

The wheelchair shop said that once they saw that some people really hated the stroller that we liked so he stopped going through the process. They didn't call us. I told him that I had emailed his PT and given her our other options. Apparently it wasn't passed on. I gave him the new information and that we really liked them. He had never heard of the brand we were looking at so he sent an email. We have to wait. Some more.

The average wait for a wheelchair is 9 months. Seriously! Nine months. I cannot be carrying Tyler for NINE more months.

I heart Faces entry

It has been a VERY long time since I have decided to participate in a contest over at I Heart Faces. The theme this week is Vrroom Vrrrom. Being that it is getting close to Tyler's birthday, I have been looking back over some photos of my grown up baby.

So I am entering one of his photos from last year that I took. Nothing beats a little boy and his Radio Flyer!

A little bit of *his* story. Tyler has Cerebral Palsy. We bought this bike so he could learn to ride and participate in the neighborhood. What we didn't know was that riding a "normal" bike would prove to be to difficult. Tyler needs an adaptive tricycle. He doesn't have one just yet because even with a discount of 50% the bike out of pocket is our cost. The bike is $700. Tyler can't keep his feet on the pedals on this bike even with adaptations but we REALLY wanted him to have a * normal* chance at what the other kids were doing. He was so happy as we pushed him around the neighborhood. He was ringing his bell and the other kids would take turns pushing him.

Some day I will get him a Rifton bike but for now we settle on looking back a year ago to a time when we innocently thought for a brief moment we were like everyone else!

A boy with a Radio Flyer!

P.S. Click on the photo to make it larger!

Shriner's Hospital and Rifton Bikes

Today marked the first official start of our Summer. Ty has been out of school for a week but due to vacation/traveling and grandma and grandpa's house we haven't been home. Since we didn't qualify for summer school Ty is ALL mine for the summer.

One of the things that I have the hardest time with is getting everything done ( house cleaning, entertaining etc. etc!). Part of it is being lazy but the other part is Ty takes up a lot of my time. Just like any kid, any time you do get something clean they are quick to unclean it. Unless I am entertaining him he is trashing EVERYTHING. He doesn't play on his own at all. ( I guess you can thank his non imagination play!)

So I decided he MIGHT benefit from Story Time at the Library. We don't live that far from the Library so today we checked times, called and made our appointment( limited space) and we left and walked to the Library. Tyler loved it.

We came home, ate lunch and off we went for our weekly therapy in Salt Lake City Shriner's hospital for Children. Therapy today was just PT. Our Speech Person canceled while we were there. Kind of disappointing given that we have a bunch of words. FINALLY!

One of the things we are working on with Tyler is balance and distance. He can't walk on his own for a long period of time. Though he tries really hard it just isn't possible. He holds onto one of our hands for stability. If he didn't do that, every 500 yards or so he would/does fall. Hence the broken nose and stitches a few weeks ago.

One of the other things we have thrown in to the mix is riding a bike. Shriner's has this really cool adaptive trike. It is big enough that he would be able to use it till he is like 150 pounds or more. At the rate we are going he would be 20 before he out grew this bike.

The trike is called the Rrifton. It is Lime green and awesome. I seriously LOVE this bike. It comes decked with foot extenders so he can easily and quickly pedal and man can he go. BUT WAIT... there is a catch to the bike. $1500 dollars worth of a catch! ( unless of course a nice person knocks on my door with a check!!)

While I would pay that in a heartbeat it isn't going to happen. But the best thing about Shriner's. It's FREE! Now don't go and get over excited on me. We don't have one yet.

The Catch- The REAL catch!

There is a waiting list.

AND Ty has to show he is interested on his own ( check SORT OF) and be able to do 5 rotations on his own. ( check, check) This has to be done for several PT visits before we can be put on the list. I am not sure how long the list is but don't you think it would ROCK for this kid to have THAT bike!

After riding the bike Tyler was pretty spent. When things are hard it is like pulling teeth to get him to participate. We did and we kept pushing. Our therapist, Mark, is really good about standing firm and not letting Tyler get his way. He never comes right out and says it but he thinks Tyler is spoiled. ( I know... not my child) He is constantly telling me how much Ty would benefit from "other" children, like a sibling. ( Gee really! Thanks... and if I had a DOLLAR for every doc/therapist/stranger on the street that said that to us, I wouldn't have to wait for the dang waiting list for THAT BIKE!)

When therapy was over, we visited the prize box. Ty is slowly getting not impressed with the box but he was happy with a Tinkerbell sticker book. He told Esther "BYEE" and off we went.

What makes Shriner's the " Almost happiest place on earth?" It is run solely on donations. The Mason's and other private donors give to this wonderful place and their donations make it so that kids like Tyler get to have therapy that would otherwise be to expensive and therefore non-existent.

In recent years, the donations and cost associated with the hospital and the care has gone up. They will now charge your insurance BUT what your insurance doesn't cover they will pay for. You never feel obligated in any way to pull out your debit card and pay a balance or cry at night because you can't ever pay them enough.

Instead we find ourselves thanking those who are able to donate and DO donate. It is because of their charity we feel that Tyler is doing so well.

What do you think of the BIKE!!?