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.

Botox and Seizures

Since there is no cure for cerebral palsy, we treat the symptoms as they arise. Sometimes we mask the symptoms we don't know are there because we are already on medication. And sometimes, we stick with one path of medication.

In January we tried botox again. We have stuck with Phenol for so long that I was worried about trying something new. Our doc in Utah wanted some botox on board and so we did it. But we went all out. We did the serial casting. We added an extra week on those. He did great. We had some behavior issues at school starting about this time. We did the botox, we did the cast, we knew that once we started on this route we would be putting him under every 90 days. OK, 91 days. So, on day 91 we went back in for round #2. We needed some blood taken and needed a lot. We are having some major endocrine problems and we needed a more accurate med level of his seizure meds he is on.

Dr. Bernes (our Neurologist) And Dr. Shafron, (our Neurosurgeon) worked together to get the blood work we needed. Tyler hasn't really grown in about 2 years. His weight hasn't moved for 2 years. He still fits in clothes he wore when he was 5. He just doesn't grow. With the seizures he shows, we need more medication but we can't, because he hasn't grown. It put Dr. Bernes in a small amount of a panic.

So while Tyler was asleep the procedure went great and they listened and didn't give him versed. The sleep doc gave him something so that as he woke up he would lessen the chance for a seizure and I took him home. This was really routine, so it was something I could easily do on my own.

Grayson was at his friends house but after I got Tyler, he was much more drowsy than he usually is. And we were training a new respite/hab workr, so we were just trying to get as much done in a night as we could. As Tyler and Grayson were playing their hearts out and all of a sudden Tyler stops dead in his tracks and his respite worker was 2 steps away. He went limp and we realized he was having a seizure. He wasn't responsive, he was weak and he was just gone. My heart sank. I made Dallas try to get the rescue meds in his mouth. But by the time we got them in, he was coming out of it. H didn't throw up, he peed his pants but everything was just so different than what we have seen before. It was horrifying to see a seizure start and stop.

Shortly after he stopped, he crashed. He feel asleep immediately and in a deep, fast sleep. I carried him up the stairs ( and this is another reason I want a one story in August!) and dressed him for bed and put him in my bed.

I slept across the bottom of the bed to keep him safe, only to realize that whatever happens in that brain, I can't save him from it. As sobbing and sadness and extreme guilt set in, I realized that this is our life. I have no control over what happens.

Sleep was few that night but the next day resulted in the adverse reaction team calling and us being put on the naughty list. We will probably not be able to do this next round of botox but will have to do something else. Our only option is in Utah right now. But right now, we are trying to sort through the behaviors and figure out what is behavior and what is seizures.

January Surgery

January was not all fun and games. Along with a neurological change in Tyler, we chose to add insult to injury to the poor kid and do up his body for some major tune ups.

We generally do Phenol for his little legs but both our Utah doc and our Arizona doc wanted to make sure that we were all on the same page. We had to try some botox before they kept doing phenol. So we got our with our Neurosurgeon and got the ball rolling. We finally also got to a point where Tyler's retina's were stable so we needed to do some major muscle surgery to help his null zone. I was not ready for how bad the surgery on his eyes were and I broke down sobbing. His tears were bloody and he was so upset that he couldn't scratch his eyes and I cried because I am so sad that we have to keep doing this. But we sure were proud of how well he did.

He had to miss a week of school so we were at home doing lots of entertainment. He wanted to ride his bike a lot and go to the park, but with casts on his feet he was not loving that loss of independence. It made it a lot more work and him a lot more angry. We were already dealing with a lot of anger issues and it made for a long 2 weeks.

One of the days we were out of school and he was SOOO angry. He was so upset that he didn't want to do anything and he curled up on the floor right inside the door and he fell asleep. Grayson was so so hard with Tyler this week. He was mean and horrible and would hit him until someone ended up in tears.

The redness went on for a few weeks and is still read now but his eyes look so much better. The picture that I have below is from the back of my camera  and his eyes are straight. We are thrilled with the results of the surgery so far. Now we just need his glasses back.

One of the biggest bonuses that we had, we were home when Tyler's best friend came to town. We were able to go to the IDEA museum and see him and touch him. They were great to allow Tyler some one on one time to get up close and personal.

Tyler was casted for just over 2 weeks. It was a VERY long 2 weeks. Tyler was unable to do anything that he is able to do for himself. No showers, had to be carried, had to be in a stroller. It was hard. He is now in full legged braces. And seems to be doing well. We need to do botox again in April.

Jan. and Feb. were behaviorally very hard months. Tyler was sent home from school 2 days and he has just been very very hard. It looks like we are working on a few things to help him.

Botox... Not our friend

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

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

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

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



Botox is over. The day is over.

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

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

Countdown to Vacation

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

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

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

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

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

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

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

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

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

Leaving at one, getting home at 5. Day one

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

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

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

Oh it makes me tired.

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

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

Botox and Tyler

Yesterday Tyler's docs office called to let us know that they had a cancellation for botox TODAY! We had our appointment already setup because she is booked forever and ever and ever in advance ( like six months) but we were waiting on our insurance. Luckily it got approved and we were all set but a move up in appointments was even better.

Dallas and I decided we would go and get it over with. It is so hard to know that we are subjecting him to pain and suffering but we know that in the end it will be good for him.

We left just after noon and had to stop and get something to eat. We decided on the Mills so everyone would have something that they wanted. We stopped at the pet store so Ty could see the dogs. We ate and then headed into the office.

By the time we figured out how to get in and had to turn around a few times we were ten minutes late. We walked in and the over nice office staff freaked and told me we were canceling his appointment and it would be MONTHS before we got in again. I got mad back. My momma bear claws come out when doctors staff treat people badly. I got really mad at the lady.

We left in plenty of time to get there on time. There was construction AND they called us and wanted US to come in. The change in plans at 5pm the day before doesn't give many of us time to change schedules and get everything together. Ty had therapy scheduled etc. So if you want ME to come in for you be a little flexible.

The desk lady went and asked the doctor if she would still see us. Which our doc did but we would have to wait to the LAST appointment of the day. This is the kicker. He pretty much WAS the last appointment of the day and we didn't wait more than ten minutes. This doc is seriously the hardest to get a hold of. Between us and our brace guy it took us 3 weeks to get in touch with her to go about getting the right kind of braces and casting for him. Seriously, I was such a mad momma.

I apologized to the doctor. She talked to us for about five minutes, we settled him on his dads lap and she went at it. 2 shots, right in the top of his calf muscles. He screamed, tensed up and we were done. He bled a little but got band aids, which he pulled off as we were setting up his follow ups. Then we went home. Another plus, we did get Dallas an appointment there for his neck. Maybe he will get botox as well.

I was expecting it to be A LOT worse and was glad that it went as well as it did. Ty is a real trooper to do all he does. He is a great kid and has the best disposition.

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.