Thursday May 21st- Second opinion Ortho Consult ( Ok turn out to be 5th)

On May 8th we went to Shriner's hospital in down town Phoenix Outreach. We  saw a Doctor that went over the results of our gait lab with our regular doctor in Utah and our physiatrist in Utah to provide another opinion and recommendations to our newest Orthopedic doctor here at Phoenix Children's.

Shriner's is an amazing place and we always have such a good time going there. We are able to met up with a few of our past friends we haven't seen in a while. And of course the Shriner's are always trying hard to make sure your appointments is fun and happy.

We got the information and the doctor was heading to converse with Dr. Shrader ( the leaving Ortho surgeon and Dr. Andresevic, our current orthopedic doc) over the next week.

I got an email from Dr. Shrader letting us know that they ( Dr. A and himself) that they would like to take Tyler ( His file, not the kid! )  to a conference and use his gait labs and x-rays and movement and all that jazz, as a case study for even more input.

We were gearing up for our 21st appointment with no full information on what in the world we were doing to our child.

When we got to PCH we went in and got into Dr. Emily's office and went in to See her. She said that she was excited to have this case. That she has never coordinated with this may doctors to take care of one little  boy. She also said that Shriner's doctors are VERY protective and that our Physiatrists are VERY protective and want to make sure that everything is written down and we fully understand.

This was the list we were handed of what everyone had agreed was the best possible outcome . The last one was just a possibility. They would make it solidified once he was under anesthesia as far as what lengthening we would need to do or not do. Under anesthesia Tyler doesn't fight his tone. So because of this they can tell you what really needs to be lengthened. 

The definitions are as followed for the list above: ( this is a pretty simply definition)

1)Bilateral abductors releases- abductors are the muscles that make his legs open in his groin area. ( this was NOT done!!!! He had great tone and wasn't fighting and his range of motion was amazing!)

2) Bilateral hamstrings- Lengthening the hamstrings on both legs is basically cutting the fascia or thin lining and basically cutting them in half so that they can be lengthened then grow back together. 

3)Gastro lengthening- Lengthening his calf muscles in the same fashion they do the hamstrings. Done on both legs 

4) Right foot column lengthening- His feet are deformed a lot and of the work done was to correct how his feet are and how to make them not have contractures. 

5) Left foot Lengthening: same as above. 

6)Right femur rotation- Break his leg and turn it correctly

7) Right Tibia rotated- same as above and rotated his tibia. 

8) Right rectus femurs recession is the muscle on the outside. Basically the thigh. However, this ended up not having to b done. 

We then headed down to the clinic to for pre op stuff. His nurse there was so so terrible. I wish we could keep the nice nurse that was still learning her job. She was fabulous!!

This was a very long and a very information filled appointment. It was exhausting and the start to  very long week. 

Phenol Injections

Phenol injections are kind of old school. ( Or so I was recently told) They don't do them in Phoenix. The last batch of Phenol was contaminated and so only small amounts are available when we do botox. Last round of Botox I was not a happy camper and I suck at being a mom so I avoided all surgeries until I couldn't put it off any further.

Phenol works longer, faster and better for Tyler. So we did it. The results are almost immediate. Tyler is also a trooper and was up going as soon as they would let him out of his room. He was discharged 35 minutes after he came back.

They came to find us to do discharge papers and Tyler was out doing just what he always does. He plays ball.



We got back to our Grannie's house and Grannie AND Grandpa were home!! Grandpa had been VERY sick AGAIN and we were so glad he was home. So the boys went and played doctor and hang out with the cool people and left me to my own thoughts of overwhelming proportions.




Grayson won't have a thing to do with his Grandpa in the hospital but at home he won't leave him alone!



We had to wait one day to make sure we were seizure free and so we were close to a children's hospital instead of in the air. And then we left for home!!!



Landing and watching for our dad



The surgery worked and Tyler is as loose as we can get him. Unfortunately his legs are not doing so well. We are looking at a larger and more invasive surgery and my poor heart is not sure it can do it just yet!

But we were glad to be home.

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...

The Discovery Stage

The day of Ty's birthday I ran into a mom of a cute little guy that was in his class last year. C ( how we lovingly will refer to this cute boy!) has autism but is VERY functioning and VERY super friendly. Instead of transitional kindergarten he went to a charter school. I thought he was going to go to typical kindergarten. Anyway, I asked the mom how he was transitioning. Tears welled up in her eyes. She said he was struggling. That she was struggling. At that point I realized that we all need certain things.

The week of Tyler's birthday I always struggle. ALWAYS. While listening to a fire fighter from 9/11 he said " They say time heal all wounds. But it doesn't" and that is how I feel. While I didn't see the things they did, nor did I see the destruction that was seen, but I saw horrific things that don't go away when I close my eyes and that even 5 years later isn't healing. It is still raw. Only because the effects of what we saw and what came of the events are still coming up.

This week we had Ty's IEP and though his team is wonderful and really do have his best interest in mind, it stinks a big HUGE pile of manure. GINORMOUS pile of manure really. It is never a pleasant experience to see on paper where the world puts your kid. Generally, these manure meetings happen right around his birthday ( by law) and it really takes a toll on my spirit.

This year was his year to get his IQ and stuff put out there. THE WORST EXPERIENCE EVER. One paper says he sucks and then the testing for normal kindergarten stuff says he is average. While we rejoice on the average, the fact that he can't brush his teeth and has no self help skills makes him below average in the rest of the scoring.

The older he gets the more we find we will be doing for him for a lot longer than we had planned. The older he gets the further behind we seem in some area's. The older we get the more our life is different than the neighbors. The older he gets the more we realize he doesn't have friends like the others and we rely on family more than the average Joe.

But the older we get we realize he will never understand hate. He doesn't understand when people stiff him on his birthday. He doesn't understand when someone pushes him he is not suppose to be sorry. He doesn't understand when people stare at him that you are staring because he is "different."

He doesn't understand anything other than love.

Even when we listen to him being judged by "normal standards", we know deep down that he is smart, he is loved and he is and will always be innocent.

Dumbo's mom said " All of those people who scold you, what they'd give just for the right to hold you!" She was right..... she was VERY right.

We aren't doing it

When we had our last rehab appointment we needed to go to the spastic clinic. We had never actually been to it since we did 90 percent of our stuff at Shriner's hospital, but we got the appointment and I took Tyler ( and Grayson because I was still pregnant, haha) and started a plan to get Ty a little less spastic ( or tight) in his legs and other parts.

Originally the plan presented was to cast him and brace him. We did that and it didn't do anything. In fact it made no difference and just made him upset. The people doing the testing weren't surprised because they don't think it is in his hamstrings but in his ankles. Since they didn't think it was his hamstrings a cord release surgery was not an option.

We moved on to Phenol injections which we have been giving. We got them moved up and sooner so that we could look at a baclofen pump and a trial. So we decided to go forward with the trial and we had to wait till after we had Grayson so that we had the time and the ability to do it.

We got the information on the baclofen trial and Dallas and I felt HORRIBLE about it. We don't know what the deal was but Dallas answered the questions for the check in. We still didn't feel ok about it.

So I called. I called to get some more information and to see if they were able to calm any of my concerns. They weren't. In fact, I was even more upset over it. I was also so mad at myself because one of the reasons to not do it is medical cost.

When I had Tyler I really thought that no matter what the cost we would give him the BEST care and that it wouldn't matter what it cost. But it does matter. If something goes wrong we lose our disability for Tyler. Losing our disability takes away his Medicaid. Losing medicaid means we pay out of pocket for the pump refills. The refills we get right now are on the 4 buck list at walmart so getting a refill is "no big deal." But a pump refill. THOUSANDS of dollars every few weeks. Not to mention that we have to pay for the hospital and the sedation that will be used.

When I mentioned cost, they said without medicaid they usually don't even try it because families shouldn't be bankrupt with medical costs. It would cause more burden that it is worth.

I felt horrible and better at the same time. It looks as though we will try a few things first and we will evaluate the situation in November. Maybe in a few months it will look more appealing than right now.

Speech Evaluation

Since getting disability and starting back on the band wagon we got a private speech evaluation so we could start private speech. No speech evaluation is the same. This evaluation along with the last one used the same test but this time he was able to get the "older" test.

We started the test with Miss A and he did really well. This was the first time that I had seen him actually listen to what they were asking and then try to answer correctly. The hardest part is when Tyler doesn't know the answer but wants to answer right and looks at me with these longing eyes. He wants to be right. He wants to make me and Miss A happy. I was happy to see how well he did but it broke my heart that he just couldn't do some things. I was also happy to see that positive reinforcement by Miss A was made.

Ty is very much not speaking as a 6 year old. He qualifies for 2 sessions a week but will probably only get one because of how funny insurance is. But he is getting more than we were getting at Shriner's and I am so thankful.

So speech is set up. That makes 2 therapies. OT Evaluation will be in a few weeks.

Welcome back.. right?

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!~

The Scooter

Tyler has a scooter. We bought it at the beginning of the summer. We bought it before we had a loaner bike. He would take the neighborhood kids scooters and try so hard to use it but would fall over and not move at all. They only had 2 wheels. So we found a radio flyer with 3 wheels.

This particular scooter was different than the other 3 wheel ones because the double wheels were on the front. Not a huge deal but he had to stabilize a little. So we left the scooter in the house where he could "practice" and then when the time came to go play with the kids he was able to do it.. a little bit.

After Grayson was born we started taking daily scooter trips outside. After the morning feeds and breakfast, I will send Ty out to ride his scooter and play in the front yard. He loves it. He plays hard. One thing that I noticed though, was how hard he has to work to get the scooter to go.

He has learned a great deal about starting and stopping. He tends to stop by falling wherever he is. But he isn't hurt. He just pretends.

It takes so much effort for him to stay up and then to turn around and get up to the top. But he tries. He tries so hard. We love him for trying so hard.

Look at his toes. No matter what we do we can't get them to not drag. By the end of the morning we have blood, but no tears because he is so brave. ( we get blood in the house right now, we have a lovely pressure sore from our shoes.)

What makes my heart melt more than anything is how hard he tries and how hard he works. No kid should have to work that hard at doing something so great, as riding a scooter.

Please stop taking my babies away

I was not awake for Tyler's birth. He was pushed into my room, a wonderful blessing was given and he was taken away. I didn't have my contacts and didn't have glasses so I couldn't see him. But my heart went right with him in the helicopter.

At 3 days old I had to leave him while they did surgery on his heart.

Weeks later they took him away from me again while they performed brain surgery.

EVERY night for 93 days I had to leave him behind. It was like he wasn't mine.

Until a month ago I had NEVER ever been away from him since I left him in the NICU. He was with my parents and I knew he was safe. He had a great time but I was so anxious to get back to him.

We have had countless surgeries where I have to hand over my child. Something about today did me in. Though there was no crying when they took him it was the emotions that I didn't expect.

Dallas had an interview so I took Ty knowing I was fine until he came out of surgery. The surgery is VERY minor but it seemed to take forever today. I even told the anesthesiologist that when he comes out of surgery he is very angry and violent and we think it is because of the versed. The doc opted that it would be "better" to have him not remember the leaving me and comfort him after. So reluctantly I agreed.

The wait was forever, we got a roommate and D finally got there. Soon after he got there they carried in a screaming kid. They didn't roll his bed in with him because he was not "safe" in his bed. He was thrashing around and wouldn't stay in his bed and was very violent. They handed him to me but that was short lived. He thrashes and kicks and I couldn't hold him any more.

My heart broke.

Dallas took him into his bed and tried to calm him down. The nurse came in and asked me if this was "behavioral?" I was so mad. No he isn't doing it for attention. I told you guys he would do this. It just made the situation worse in my heart.

It was heartbreaking to hear Tyler tell his dad to let me go as he thrashed around. It was heartbreaking to have him slump to the floor in tears and anger. It was horrible. Add that to my frustration of having no way to help my baby feel better and keep my other baby save a few tears were shed. But overall I just felt angry.

Dallas took Ty for a walk and out to the basketball court, which Ty was asking for. I went back to pack the bag and wait for discharge. It took forever. Seeing as we didn't need to stay every time I paged the nurse she sent in the not smart, not any good with kids CNA. I finally went to the charge and asked to be discharged.

D had to carry Ty to the car and we put a crying, sad little boy in the backseat. My heart literally broke knowing he was so so sad. We got home and we set up a picnic and got some chippies and he was fine. He was happy.

I left for my appointment with Grayson. Seeing as it is our last one I had a few questions about what is going to happen. Grayson is not going to be considered "term." But for us a 36 weeker is close enough. So close we don't think of him as a "preemie" especially when you consider him 7 times LARGER than our first kid. But we needed some information about what to expect.

There is still a chance that he will need to be in the NICU. He might have to be on CPAP and might have some issues getting his temp up. All things are VERY minor compared to before and we knew it was a possibility. At the end of my appointment I started crying. My poor doc must seriously think I am insane.

I sobbed telling him that I was so sick of people taking my babies away from me. That I feel like they are always just taken away so that I can't love without my heart being broken. I have had my OB for 12 years or so. He knows and has worked so hard to get us as close to term as possible. He sat there while I cried.

He left to get a prescription that he said he is making Dallas fill for me. It has to be filled before my section and it has to be done on Monday. He wrote me a script for a nice dinner for us at my favorite restaurant ( of course he should have included a check!) As he handed it to me he said I have prayed for 36 weeks that this baby will get to stay.

That is all I ask. At some point everyone around us that has had extra needs has had the chance to slow down on the hard stuff. Making the life routine so much better and less heart breaking. That isn't going to happen for Tyler. He is such a brave and amazing little boy, but the pain he feels will not ever get to subside. Instead he gets to be brave and I get to learn to let my heart break into a million pieces.

An ordinary miracle, that makes my heart shatter. But makes my heart melt every day.

Please... stop taking my babies away.

Back to my opinion- Insurance reform

With a baby on the way and the medical issues that we have encountered I am really interested in what is said about insurance, medical reform, and what people are saying about medical. Especially with new elections coming up, I really want to have my voice heard about the things that I feel are important.

A few weeks ago a man decided that it was in his best interest to rob a bank. He went into the bank, demanded ONE dollar and sat on the couch waiting for the police to come. Why? Because he was sick and needed to have health insurance. He knew he would get the care he needed in prison.

He was a hard working person his whole life. Not rich by any means. But he worked hard. His hard life left him in a hard place when the recession hit. He felt so desperate that he felt his only option was to rob a bank.

While I have never felt the desperation to rob a bank ( in reality.. in words maybe) but the fact that he felt so desperate for care he thought about ruining his life is a little staggering. It is also kind of sad.

A study posted a week or so ago said that they found the even with health insurance coverage many Americans find themselves in medical debt that they can't afford. They used Arizona for the study. They found that though many of the people are insured they still have medical debt that they can't pay OR that they delayed their medical care or didn't GET medical care for fear that they couldn't or can't pay for it.

They note that having a lapse in insurance put people at higher risk for medical debt. COBRA was put into place for that transition purpose but the cost of cobra is VERY costly and itself can cause people to go into more medical debt. Plus, cobra only pays your premium for the insurance, you are still responsible for your "normal" cost of usually 20 percent.

The big thing that sparked some fuel for me was a article yesterday in the Salt Lake Tribune. It was reporting that 4 out of the states current 5 insurance companies have posted margins WELL above their earnings a few years ago. Meaning that the non profit organizations have PROFITS. (Not sure how that works in the long scheme of things.) The article went on to state that they are required by law to have a fall back on the amount in "savings" but all the local insurance companies have way more than required.

Select Health is the LARGEST in Utah. In fact I wouldn't even be that far off as to say they would be considered a monopoly if people would look at it. They are reporting seven times the required amount and are sitting on 279.7 MILLION dollars. Mind you, this is the company that is 1) non profit, 2) provides all of the state insurance for uninsurable conditions and the high risk pool 3) is subsidized for programs like CHIP. They are also the ones that run IHC which runs the local children's hospitals and the programs that help with financial assistance.

With seven times the required amount they keep raising the premiums while paying out less in claims.

An example: When we moved from Arizona to Utah the Ebay plan we had was Select health. The cost of the cobra was 1200 a month. We paid for the highest plan that was equal to what we had in Arizona. It didn't have a deductible, it paid 100 percent of our claims. It also paid our pharmacy benefits. So even with a high monthly cost it was well worth it. 2 years later we on the exact same plan that was offered before, cost is 1300 and we now have a deductible ( considered the high deductible plan because we would met that deductible within a month depending on the month for Tyler. We would met that deductible within 3 months without any procedures for Tyler and just for his care) after the deductible we would be 100 percent covered.

Why would we pay 1300 a month to be fully covered? The honest answer: We can't afford to pay our percentage of the cost. That isn't to say we would have no food, or a place to live. If we paid all our monthly "normal" bills, we wouldn't be able to afford the full 20 percent without having a payment plan. With normal bills we are talking a set check already to IHC that we have paid for 6 years. This is just what would accumulate on my credit type of "can't afford." That bill would just keep getting higher and higher

While we are not above paying for our own health care costs, when is enough enough? Meaning why can't I buy a house and live a "normal" life without having to deny my child any kind of treatment? Why can my credit be trashed by said non profit organization because we are paying what we can on treatment that they say we don't get financial help.

What treatment am I denying you might ask? GREAT question. Because of Tyler's Cerebral palsy we have certain protocols that kids go through to give them the best possible chance of living a relatively "normal" life. Things like walking, talking etc that come usually only come with expensive therapy. At the beginning there are services that help. Early Intervention is a great service given by the Federal Government in any state. Sadly those end at 3. Then we are forced into the school system where the only guideline is to make them "functional." That is left up to us as the parents to go above and beyond functional. How? By getting them outside therapy. That means you have to use the said above insurance company to pay for said therapy on a condition that they don't see as rehabilitating but chronic. Therefore, only 12 visits a year are permitted. Because he will never be "cured" they don't find it a therapeutic investment. If we can't afford the 20 percent a visit how can we pay for the amount it would take to keep him going AFTER the 12 visits are fulfilled? Easy, we add it to our stack of ever mounting bills where we pay a month. And what we can't fully pay off we add to my credit which in turn causes more collection calls than you can imagine.

Tomorrow we will thankfully be getting some care from our local Shriner's hospital where we are going to bill that darn insurance company but Shriner's won't come after me for the portion that they won't pay. Then my son will not be denied something that will ease pain for him. And as his mother I don't have to not worry if I can afford it.

What are you thoughts? What have you found works for you and your family? How do you find yourself paying for those insurance bills?

Spastic Clinic

After our appointment with Beverly we were sent to the spastic clinic. The Spastic clinic is where there is a bunch of therapists and a physiatrist ( a CP doc) going through the things that will make the kiddo's more functional and give them a possibility of a normal gait or something that will make them feel better and not hurt every day. I think that is something that I forget. Minus the stuff that we can physically see, Cerebral palsy HURTS Tyler physically.

They wanted to evaluate Tyler for the 2 options that just might work for Tyler. Our options are a Rhizotomy or a baclofen pump. In order to do the pump Ty needs to get a bit fatter and we need to do a baclofen trial. We would insert baclofen into his bottom spinal cord and see what muscles it will effect and what tight muscles it will take away. The trial takes all day. We have to be in the RTU ( rapid treatment unit) for up to 12 hours. Dallas will be gone on the first option for the trial so we are hoping to do it at the end. There is no way I can do it alone so we have to make some adjustments OR do it in September. But he needs phenol in between with some casting ( which isn't going to be happening because I can't carry him) and we have to have the shots out of his system. So we are kinda in a tough spot.

The Rhizotomy ended up not being an option but it was clipping some muscles in his legs and gastroc muscles. (A muscle in his legs) Apparently his tightness is not exactly where it looks at first glance and after making him very angry and upset they found the right area. So thanks goodness we don't qualify right now. Oh and we can't forget that it takes MONTHS in the hospital to recover with intensive therapy to get him to walk again.

They checked his range and his spine and watched him walk. While I was talking to the doctor one of the therapists took off his clothes so she could see his muscles move. He was TICKED. He kept screaming "My pants, my pants!" So the lady threw them across the room so she could get him over to the other side. He grabbed his pants, sat down and tried to put them on. HE was so not a happy camper.

After 2. 5 hours of poking, prodding, and screaming and being held down we were out of there. I was very impressed with the clinic. We got a lot of information. It was amazing to see the doc and the therapist hope right on the phone and call and get what we needed. I think after fighting for a year for certain things it was NICE to get the things we needed quickly. Funny cause the stroller showed up pretty darn fast!!

Ty is a trooper. What a kid to put up with it all. He was asleep quickly on the way home. HE did a great job the rest of the day!

These things won't go away

My friend Amy has a child who can't communicate. He gets frustrated and is left out of so many activities by his peers. By no fault of Oli's he gets frustrated. By no fault of Amy did she do anything to cause this to happen. In fact, just opposite. She had devoted her life to her son. Giving up so many hopes and dreams to work on what she can fix and make his life better.

Oli has gotten so much love and attention and care that he communicates...with his mom. Yet her heart hurts.

The last few days/weeks have been an emotional one for me, for some of the same reasons Amy is hurting. Tyler gets left out. He gets left in the "dust" as others speed away on a bike leaving his broken feet to chase after them wanting SOO desperately to go with them. He gets left out because he can't just run across the street. He can't see the cars coming. He doesn't play like a almost 6 year old but plays well with 2 and 3 year olds.

My heart hurts as I pack up my broken 5 year old and carry him home SOBBING because he wanted to ride a bike with the kids. But he can't ride a bike. Well, he can't ride THAT kind of bike.

My heart hurts as we go to a play place like Burger king and the play place is NOT handicapped friendly at all. Because he isn't "really bad" in the crippled department but he isn't really "good" either it feels like we are left in a weird spot.

It seems to be a common feeling every now and again. I think it is different for a parent where visible issues are there. Behavior things are there for lots and I get people might look at you funny at the store as they are melting down but to stare because they LOOK different is just cruel. To not be able to do things that your mind is screaming to do has to wear on a person.

Amy ( who is WISE beyond her years!) said once that even giving up our whole day to devote to our kids doing therapy for hours on end doesn't make for a very happy household, kid, hubby or wife or mom. It also doesn't always show the progress that much work should produce. Is there a good medium?

As Tyler's parent we want what is best for him. We do all we can as often as we can. These things are not going away. I wish they were. But most of all I wish they were for HIS sake.

Education with Special Needs

Sometimes having a kiddo with special needs has no perks. I do have to say close parking and door to door bus service can really rock. But what doesn't rock is that people don't expect much even if we as parents do.

"Normal" parents don't worry about IEP's, hitting milestones and the social aspect for kids that have extra needs. It generally comes easily and naturally as they grow and progress and get older. Kids that have delays are lacking something. They seem to advance in one area and fall behind or stay the same in others.

This year Tyler has done exceptionally well and he has exceeded his goals for MOST of the year. Apparently after our Christmas break he regressed in his gross motor skills. He stopped doing a few things that he was doing and even has gone as far as to not use one of his arms.

What makes me mad? We had parent teacher conferences a few weeks ago. NO ONE SAID ANYTHING. Christmas was MONTHS ago. I have NOT noticed anything. I am so mad that no one told me until today.

Apparently with his regressing in that one area he would qualify for summer school. While normally I would be totally stoked for it there is a catch. He can't attend for the other activities because he is only showing issues in one area. But what really gets me is that I asked to met with them in a week from Wednesday *( I have an appointment for Grayson that day) they have waited so long to tell me about it that they are coming up on the papers needing to be submitted.

My HUGE problem is that even though has made amazing progress he is going to be six. He is going to be in kindergarten this year. He can't write. It isn't possible with his hands the way they are. But he is suppose to be doing "regular" school? He doesn't talk like a 6 year old ( though today he told me he was sassy!) but he isn't going to get speech because he advanced this year.

How is he suppose to be in a Typical classroom with out the extra help when he isn't "really" up to par? I have accepted that he might not ever be "Typical" ( Please do not think that I don't push him or that I am degrading him in ANY WAY!) He can and will do EVERYTHING. It just is on Ty time. But give him the chance.

If he has to go for summer school and not be able to go to the other stuff, then I want to know what they are going to do to get him up to standard. I feel like he will just be blown off because he has disabilities. This isn't a chronically ill child that GETS better. Not as he gets bigger he will get better and stronger.. This is HIS life. This is how it will always be. There is no magic transplant, therapy, pill, long regime of drugs to fix this. His disability will always be there and will always be something that they look at and say " He is crippled, he is blind, he has brain damage" YES we know he has all those things. But he has a WILL to do it.

So in momma bear fashion we will be back at Shriners next week for some evaluations, starts of therapy and just MAYBE get in to have surgery that was due in October. We have another appointment with the Eye guy and with his physiatrist because we don't know where to go next.

I feel like I failed my son.

PS if anyone needs rides up to the city in the next 3 weeks we are going EVERY single day :(

Medicaid D

When we went to PCMC back in October for a follow up for Tyler's CP and last phenol injections, the Nurse Practitioner sent us down to the medicaid D office on the bottom floor. As we were going through possible future treatments she mentioned that it was unethical for her to ask us to have to pay 20 percent of the cost. His long term care would be to costly and it would make a family homeless. Without the treatment it wouldn't "kill" him so it isn't technically withholding treatment. It would just make his life a little easier. She said that we really needed to get secondary coverage so we could afford all the things that he is going to need.

Of course you leave a little frustrated knowing that you will never be able to take care of your child and frustrated that the system works the way it does. If he was more severe or had a trach there is a waiver. If we were poor there would be no issue. But the fact that we are middle of the road, middle class people we get to chose between a place to live and things that will make his life better.

After the appointment we went right down to the Medicaid D office. It was almost closing time but we decided to sit there and fill out the stack of paper work to start off the application instead of having to turn it in to another office and forget to do something. So I sat there with Tyler and filled it out. After we were done it was taken right down to the neurosurgeons office to have his nurse fill out papers. By the time we got back home his nurse had called. She filled out what she could and decided that she wanted Dr. Gooch to fill it out. So she nicely took up it there and that was all we had heard.

Thanksgiving came and the high and rush of the new baby and then Christmas. Soon after the new year as we were working on the stroller thing and I kept calling the social worker. He would never return my calls so I was annoying and called every day at 2 and left a message. For ONE full week. Then I called our nurse coordinator at our peds office. I NEVER have used a coordinator. I have always done it myself. Clint, the nurse coordinator, laughed and said our doc said the same thing. She will never call you. She does it herself. BUT I broke down and got some help. He called a few times and finally I got some random person who said someone would call me back in 3 weeks. I was like um NO.

After a few 3 hour phone calls our dude called us back from PCMC. He said that they had been sending it to a random Nancy Brown somewhere in Lehi. We got them looking at our application and the address they have is our current address but they were sending it someplace else. Once we got that fixed we got some extra paper work in the mail.

Last night as we were going through insurance coverage and deciding how much we could afford on the extra stuff for flex spending and what not we filled out the PILES of paper work. They don't cater the forms to kids so you spend an hour filling out stuff that is Not applicable. Then they ask you to compare your kid to other normal kids and tell them what is not "normal" for your kid. I was like "Um really." Your asking for all our health records to send it to a board of people to determine if he has a need for disability and you want me to remind myself that we suck.

Sweet... Lets do that.

So 2 pages later as to what we suck at and I am about done mentally. Emotionally I was done from the day before. Tears start flowing. Then MORE tears because I realize as we get older and older, that me as the mom are making the adjustments of stuff we didn't want to be doing at 5 and other people are telling us he isn't welcome because of those things.

Today, I have lots of appreciation for the kid that I do have and a realization that his life and his well being are a balance and that if others who should love him can't made the adaptation then I will do them for him and do them alone. If we can't get the disability then we go homeless or sell a car. We make his life easy for him. We didn't want to be changing diapers at 5 and we didn't want to be ordering strollers or wheelchairs and braces and being told we can't do something that will make his life easier.

So 30 more days and we MIGHT find out that our spend down a month is outrageous because again.. those darn middle class folks just are rolling in the secret Dough and we start over in our quest.

If you have applied for Medicaid D what advice do you have? Was your spend down NUTS? Are we barking up the wrong tree?

A thanks month continued

Continued........

6. I am thankful for speech services. Oh how I love that Tyler woke up talking one day. Through tears and years of speech something clicked somewhere. As fast as he talks sometimes he had a lot of built up things to say.

But the sweetest sound is the sweet prayers he says and the times we FINALLY get to hear " I love you."

7. Tyler's "team." Working with others to give him the best possible chance. I don't mind being the momma bear in the meetings and in the doctors offices. He deserves the world. As his mom I plan on providing it!

8. A warm house. OK in real life my mom will say its freezing but I am thankful for a place to live. We love, love love our ward. They are amazing. I love our neighbors. I don't think I could ever make it through the roller coaster without Laura and Maria. I love that they love Tyler and help him participate in primary.

9. Handy Manny and Mickey Mouse. They keep Tyler's mother sane. Oh and we can't forget Rocket. Days like today when Ty is up at 3 am, they are defiantly something I can be thankful for. I am glad they come on a lot through the early early mornings and that we have a DVR to help us out!

10. A smile. I love that Tyler wakes up with a smile 99 percent of the time. Only recently have we seen any kind of change but he is overall, a pretty good natured kid. He is friendly when he can be and he is very sensitive to those around him. He is a sweet sweet kid.

* Wed. is prematurity awareness day. Please, if you blog or facebook, put up a status about prematurity. Every baby deserves its nine months.. NO MATTER what!*

Handy Manny?

We have really been laughing at some of the antics of the little boy we have in our house. He LOVES outside. He loves outings. He LOVES going on adventures and if you promise him one you better follow through.

We try really hard to go out once a day. Usually in the afternoon and usually some place for him to play or "do" something. Sometimes it doesn't always work but he loves it.

The best part is when D goes outside to do Handy Manny stuff all weekend. Ty is all about it!

Turner can come and help you and dad-e. There is always something that he can do to help. RIGHT?

Ladders+ cerebral palsy= I do NOT think so. But no worries. Mom is able to figure out SOMETHING. Something GOOD!

Turning over the said flower pot next to the stairs resulted in a GREAT level for the Tyler. Even if my pot is now broken, I can guarantee his skinniness didn't break it!

1,2,3... Everybody say Handy Manny fix it.. it browken.

If standing on a pot doesn't work and you have an amazing hubby and dad-e then just MAYBE you can hang out on the ladder.

But not worries, when you are at the top Dad is close by.

But to do it by yourself....well... it's priceless.

Time for Controversial issues? Insurance {Please see disclaimer!}

5 Years ago we were expecting our first ( and so far ONLY) bundle of joy. It was unexpected. At the time I found out I was pregnant I was covered by my parents insurance. Which also meant that I was double covered.

Naively I thought that I would easily be able to switch to something. Dallas and I were making some life changes and we kept trying our hand at everything. We even applied for medicaid but we didn't qualify. Instead we ended up paying for a plan that was offered to students through the University of Utah ( YES!! I am a UTE.. Who knew!!)

This insurance plan was less than desirable but it would provide prenatal care and would leave us with a VERY small amount of money due as we started out our new life. We had a few weeks to wait to get on Dallas insurance but when that happened we would be double covered again and we wouldn't owe anymore than the small amount when we weren't double covered.

This of course was when everything was going to go as planned. I was going to have a baby the last day of my finals in December and life was going to be a fairy tale. Then came Sept. 1st!

D and I worked at the same place. He was laid off and 3 days later so was I. We were allowed to keep our insurance for 30 days. On the 21st of that month lightning struck and our world changed.

By the end of the month of September we had MAXED D's insurance policy and we were fighting with the U insurance because they weren't about to add the massive bill that we were asking them to add. We ended up only being able to afford cobra coverage for me and we got the Social Security disability insurance that is for babies born under 2 ( or three) pounds. ( I can't remember the exact amount.. but I think it is 2 pounds) Tyler was thankfully covered.

Coverage for Tyler has NEVER ever ever ever ( did I mention EVER) lapse from the day he was born to now. We have gone to great lengths to have him covered no matter what. Dallas and I have not gone without insurance and it has been done in GREAT lengths to do so.

When we chose to move to Arizona we had no idea the type of coverage they had for children with disabilities. Instead, we just paid more out of our check for GREAT insurance coverage. It was a while after we moved there that I met a women who had a child with CP and she gave me all the info for services. I was amazed and SHOCKED at the amount of services that were available to us.

Because we left after having been connected into Shriners I didn't have to use the CRS program. Which, in my opinion, was a HUGE blessing. CRS you are only allowed to use specific doctors and you are not able to pick what docs you want for specific specialties and only seen during specific days. Frankly, I was picky and I wanted specific docs for specific things that would work with our doctors in Utah. Plus we had great insurance through Dallas work. So the CRS and any long term care was ALL secondary. The reason we had GREAT insurance was because we paid way more out of pocket, opted for a PPO and got referrals for EVERYTHING. Also, unlike Utah, the idea of a monopoly is far less apparent. There was a children's hospital that we only had to go to ONCE!! Banner desert in which we had 2 docs, a private Eye guy, private ENT and a few docs at St. Joes. It wasn't a IHC or die type situation.

As Tyler got older and aged out of early intervention the type of services we got change a lot. We were given long term care and given rehabilitation services along with respite care and we also had regular therapy with no limits because we had Long term care services.

This is where it gets tricky. Utah mommies with special needs or even EXTRA needs look at that and think " WOW why the HECK did ya move? " And we think... we have NO idea. But soon after we left massive cuts were made to the system. That being said... some things about the system.

There was no case worker that would help you get all your services. I was the person who had to go out and get the services. I had to pick places to take him. We were on TONS of speech waiting lists. When we FINALLY got on one she moved and then we were stuck with therapy at 3 different locations. My respite was through one place, and my hab was through another. The services were split sometimes and I would have to be the one to make the payroll splits. I had to find my OWN respite people. I was the one that found all the therapist and all the stuff that we had.

It wasn't like it was just handed to you and you just got. You really did have to work for it. There were waiting lists all over for certain things and sometimes staying with a company you might get bumped up on the list just so they could get all 3 of your services. Ty had those services Tuesdays and Thursdays and we just LOADED him up.

We still used the respite care and used our HAB time for things like music therapy and a few sessions of water therapy. We also had a person who came in to work on specific things. Like OT goals or had to have an educational something thrown in there. When I finally got Corin I thought I had DIED and gone to heaven. But it took a lot of effort to find all those things. It wasn't just something you woke up and had. It took effort. A lot of it.

The decision to move came after 2 brain surgeries that were emergency and we ( Dallas and I) had no other support system. We were it. Dallas can't stay at the hospitals. Tyler needs me to be there. He is sick and in the PICU for his entire stay. When we get home, all carpets must be cleaned and the house bleached from head to toe. Doing it with no help ( aka a mom or a dad or a grandparent or sisters) makes for a VERY lonely road for us parents.

We didn't make the decision to come back to Utah FOR the insurance benefits but we also didn't think that because we were not ever without coverage finding health insurance would not be difficult. But we were wrong.

So along with the choice to come back to Utah came the praying, spiritual confirmation and some pretty amazing things happening to make us really be firm in our choice. It is something that I know we are judged on because we have sort of bad coverage here in Utah. The move and all of that went really well and we kept paying Cobra till we could get something else.

Our Cobra was the same plan that we were getting in Arizona except it was through the monopoly IHC. We had great coverage. We paid for that coverage with a price tag monthly of 1200 bucks. We were thankful for that option but it runs out. So we were even more thankful when D was offered a job with insurance.

This insurance coverage is bunk. It is SOO crappy compared to what we have had in the past INCLUDING the Cobra!! We pay outrageous amounts in prescriptions and all that jazz and then 20 percent of everything we have done. ( Which is "normal" and we know that. But when you are looking at 20 percent of 9 specialist, that is A LOT! Oh and what about those emergency brain surgeries that we haven't had yet! HOORAY! But we did have Gal bladder surgery.)

So, Yes. We Sure did walk away from coverage in Arizona ( that then got cut less than six months after we left) to come to Utah where we have 2 sets of grandparents 7 Aunts, 2 uncles and ample cousins to play with and people to help support us during our time of need. Especially when we are trying for another and knowing how well our pregnancy went last time we knew that having family around was the only way it would work.

We really felt that the spiritual experiences we had on choosing to move back was worth it at the time. We feel our doctors here are where we need to be right now. We feel we have the support system from most of those Aunts ( one uncle is FAR away) that Tyler would be taken care of if we needed more help to get one here safely.

Through the months of getting here we truly struggled to keep that Cobra coverage paid so that Tyler was covered. We went without a lot of needed items in order to make it work. That above mentioned support system wasn't exactly like I had envisioned but yet, another support system was there.

Until now we have never really gone without anything medical. We have always said no matter what it costs we will find the money somehow. That was until now. Tyler is in DESPERATE need for a adaptive stroller. He doesn't need a wheelchair because he doesn't want to sit down. The adaptive stroller are for the activities where he REALLY wants to go and I cant carry him any more. Wheeler farm. Perfect example. He walked 90 percent of the time, but those darn legs were so tired that sometimes he would need a ride or I would have to carry him. Hospitals, same thing.

We use Shriner's but they don't really do Strollers but do wheelchairs. So again. We will do what needs to be done. Somehow...

And, the kicker of all kicks....... We went to see the rehab doctor. It was a follow up on his phenol shots. He need them again and we were getting those set up. We were given some information for children with spastic legs like Tyler. It is called a baclofen pump. First he needs to have a baclofen trial. As we were discussing the options of the pump, the Nurse practitioner checked Ty's insurance status and found we have to pay 20 percent. The tone of the discussion changed.

If we have to pay out of pocket they won't do it. They say that because the cost of taking care of a child with a disability is so daunting for life long care that paying out of pocket isn't possible. I was CRUSHED. Ty deserves so much more than that. I told her I would pay whatever I had to but the discussion was over and we won't be getting to do the baclofen pump or trial until our insurance changes or we get covered by medicaid.

What do other people do? Why should Tyler be punished because we don't have a million dollars in the bank? Isn't that why we have children's networks?

So we wait. We sit and wait. We hope that something will come up and we will have all the things we can that will help him be a more functioning person.

*The thoughts expressed on this ( and some future posts) are not directed towards one person/family/group of people or the likes. It is experiences that have happened, are happening and will probably continue to happen. If you would like to comment please do so. It is a place of discussion. If you are offended please email me and I will be happy to explain or try and avoid conflict.*

** images are courtesy of Google Images**

Things I never thought I would do

There are a million and one things I thought I would be doing when I found out I was pregnant. Labor with no drugs, breast feed till one, every single sport open to kids, teaching them to ride a bike, have them read early, talk with great precision, never get sick and the list goes on.

There are a MILLION and one things I never thought I would be doing and have done since finding out I was pregnant and having Tyler. Some are "oh so much harder" than I ever thought they would be. They are sometimes a cause for great heartache when I realize just how far off the path they really are I kind of get sad.

I never thought I would :

• Be asked if we wanted to continue care. Though we didn't sign a DNR in the NICU there were several talks and things mentioned about if we knew what his abilities could potentially be and what could NOT be.
• Sending my son off to go to brain surgery. ( 7 times)
• Sign up for special therapy.
• Enjoy the company of the Foundation for blind children and wondering if he would need to use a eye cane to "see" and setting up vision therapy for him at school.
• Sending my 3 year old child off to school on a "short bus"
• Get a diagnosis for Cerebral Palsy
• Wondering if I would ever take my baby home
• Not being able to have him play on his own

Most recent and one that was hard to do was fill out paper work to receive a Handicapped parking permit. I KNOW everyone is Jealous that we get to park close but the reality of accepting the inevitable was really hard.

Getting a diagnosis and dealing with the cerebral palsy is just what it is. It is part of our every day life and on a regular basis I don't wake up and say ( or think) " Oh here comes my kid with Cerebral Palsy.) But the reality kinda hits hard when I JUST can't carry him any longer.

At Thanksgiving point he was determined to walk and pull the wagon. He got SO tired he ended up on my shoulders. I am to overweight ( yes.. I need to work on that) and he is so big that I can't carry him on my hip and he has to be on my shoulders.

Going to the grocery store is a chore. We end up having to walk the long length of the parking lot. It is just not working for me. If we can get approved for disability then I am hoping they will let us order a stroller for him. If not, we work on getting a jogging stroller that will hold larger kids.

The list, I am sure, will grow longer as he gets older. We are proud of him. We are trying to be the best parents that we can. Doing all we can to make his life easier even if that means doing something we never thought we would do.

Summer Days

Last night our toot face decided he didn't feel well. He had acted a little bit off for part of the day and it continued. About ten he started crying and Dallas and I brought him into our bed and Dallas took over the new twin bed. He gave T a blessing and Tyler was out before it was over. He slept soundly the rest of the night.

We decided to add Baclofen during the day as well as at night. So this morning I dosed it up, gave him some Motrin and waited. Of course in the mean time we cleaned, ( totally click... best new system. For the fly lady drop out!) showered and decided that we needed to go to the park and eat lunch.

We decided McDonald's would be the PERFECT place to get our "Pickik" ( yep you guess right... Ty said Picnic) and we headed to the park. There is a park in the middle of town that has lots of trees. It is also the place of said place of the Stitches incident. I was a little worried. But we got through it with VERY little.. actually NO tears ( if you don't include the ones where I would drag him into the bathroom so I could go... THANK YOU METFORMIN!)

So a visual of our day!

Lunch was "Craptastic" and Ty actually ate most of his. He also put a lot of fries in the dirt and I would cringe when he would lick it. The preemie mom NEVER forgets those germs!

Making him sit for five seconds at the beginning of getting to the park ensures that 3 bites of burger get in his mouth. He then took off with said burger to " play."

And he is OFF. He would walk a few steps then do this so he would be steady. He is having the HARDEST time staying on his 2 feet. ( for the CP moms... can you see how off he is. Those feet... YIKES!)

No worries though cause if we swing our body hard enough it goes wherever we want it to go!

And then that sweet boy comes back... just in time to get a cold drink because he is getting to hot. He would come back and say "two Hoot" and take a drink.

He is moving. Much more than we have anticipated it being.

And what better day in the park can be topped off with a trip to 2 crafts stores and .......

I
An shaved ice.......

Preemie Brain "Washing"

This is NOT about Tyler and a really nice bath, but about a study that has been sitting on my Firefox explorer for several days. I seem to keep coming back to it and reading, and re-reading. I am not sure if that is because I think it is a good idea. Or maybe it is because it is one of the first "new" things that has come up for severe brain bleeds. (There was something about Epsom salt AKA magnesium sulfate. This is the first "treatment" after they have already happened.)

The treatment/study was done in Bristol England. When a premature baby was shown by repeated ultrasound scans to have had a large hemorrhage ( from what I can see in several reports, the bleeds were of grade 3 and 4 and resulted in hydrocephalus or at least swelling and pressure KNOWN as hydrocephalus) and then expanded ventricles, the baby was anaesthetised and two tubes were inserted into the ventricles in the brain. One tube was used to continuously drain out the cola-colored fluid while the other tube was used to let clear fluid flow in. The pressure in the brain was measured continuously and more fluid was drained out than flowed in so the brain slowly decompressed. When the fluid draining out cleared, the two tubes were removed. This took on average three days.

From 2003 to 2006, 77 premature babies with large brain hemorrhages in Bristol, Glasgow, Katowice (Poland) and Bergen (Norway) were recruited. Thirty-nine babies had the ventricles washed out using the Drainage, Irrigation and Fibrinolytic Therapy (DRIFT) and 38 had standard treatment.

When they were two years old, independent assessors examined all the survivors. Of 39 infants assigned to being washed out, 21 (54 per cent) died or were severely disabled versus 27 of 38 (71 per cent) in the standard group. Amongst the survivors, 11 of 35 (31 per cent) in the DRIFT group had severe cognitive disability versus 19 of 32 (59 percent) in the standard group. Median Mental Development Index was 68 (out of 100) in the washout group, and below 50 with standard care. These results are statistically and clinically significant. ( Study Found HERE!)

So these are my thoughts. I hope that they do find something that will help their little brains. They are so fragile. They have so much against them when they are fighting for the right to get big that having brain damage makes things twice as hard to overcome the stuff that comes down the road.

There is no "cure" for brain damage. There is no cure for the seizure that come from their broken wires in their brain. If there was something that they could do to help why not try?

The study didn't show any major downfalls. It didn't seem to be detrimental to them in any way. I would opt to have had it tried on my child. I think clinical trials such as the above could only HELP.

What are you thoughts? Is the study something they should bring the the United States?