Fall Break- Tuesday

Tuesday morning was a early morning for me. I HATE early mornings. I hate early mornings even more when I hear mom and Lexi fighting over hair. OH geesh.. that is the dumbest thing to fight over AND I have fought over the same thing with my mom for YEARS. So I roll out of bed, SAVE THE DAY!! And fix the cheerleaders hair. Lexi has a big game to  cheer for and her friend needed her hair done too. YAY for nana ( that's me) for saving the day.

I went back to sleep... dang teenagers.

For our activity this day we had gotten in touch with the Museum of the San Rafael and my friend Tiffany who works there. We had set up a blind tour for Tyler. Which mean we could go in and get IN the exhibits and hold the bones of dinosaurs. It was defenitely a first for them and for us. No one lets us get any where near the exhibits. But it was so so so much fun .

We took Kayden and Koy with us. Grayson had fallen asleep so Grandpa was waiting at home for him to get up. Be had a blast.

Later that night we went to our very first  football game. It was the "big game" for the junior high and lexis last football cheer leading. We were so glad we got to see it. My boys were freezing and done by the time the game ended so we left a bit early. But we were super proud of Lexi. 

The Doc Mobile

One of the benefits of living in a "large metropolitan" is the events that come to you. We are always a stop on major tours and concerts and events. While watching Disney Junior with Ty, a commercial came on about the Doc Mobile touring America.

Ty LOVES Doc Mcstuffins so we promptly went to the address that he just so happened to memorize, to check what city it was coming to. Sure enough, last stop on the list was Phoenix. The only down fall- I work every Saturday at Helen's Hope Chest.

I requested time off and we tried to not remind him that it was coming up, until we were sure that we were going. He has a problem if we tell him that he is doing something then we can't/don't do it.  We planned to get there early, had a back up plan, had a back up person to help and off we went.

The wait was pretty minimal but when we got to the front he went off to the "dance party" that was hosted by the local Radio Disney Station. He won a magnetic and love dancing. He was able to get into the Doc Mobile and he had a chance to fix up his Mickey Mouse. Grayson fixed up his dad. He wasn't overly interested in bringing a stuffed animal. And it was SO early he wasn't interested in anything other than the donut and milk offered to him.

It was such a good day. I loved watching them do the stuff they enjoy. It also makes me glad we live in a bigger city to get to enjoy stuff like this.

A few quick photos of the dance party and the set up they had for photos.

The line to actually meet Doc was about an hour wait. And despite MUCH cooler temps than we have had all summer it was getting to hot. They didn't have a cover for the people waiting so we didn't say anything to Ty about her coming and left. We were there for a little over and hour and he had a great time.

It was great to have a day off of work to see them and play with them. That afternoon we were join to attend a pumpkin patch with our local Hopekids chapter but Grayson was still asleep when the time came. So we  cancelled our reservation and hung out.

It was a good day for all.

Utah Trip Continued

The amazing El Zaribah Shrine here in Arizona are the ones that take care of the out reach clinic for Shriner's. We LOVE them. We always enjoy the clinic and all the fun stuff they have to offer us and for all the fun stuff that they do while we wait. But the best and most amazing part of ANY Shrine is what they provide for us.

After setting our appointment with the Shriner's Hospital we got our travel plans done by the El Zaribah. Meaning, they make AND PAY for our flight. They fly the patient and one adult. Grayson is free ( but not for long) so we were able to get to Utah at not cost to us. Dallas had to work so it wasn’t a huge deal but we miss him and wish he could go with us next time.

Turns out, Utah got the dates wrong so we had to make changes to our flight dates and they were amazing and we got to stay around for a holiday weekend which made it a little easier to see both grandparents AND get our procedure done.

We flew in on Monday . We were picked up by our Aunt Nicky Poo. We dropped her off at work, took her car and went to McDonald's. Ty played and played and MIGHT have ate a little. Grayson did the same. We picked her up and went to our grandma and grandpa’s Browns. We were happy that we got to stay there and have some extra time with them. And we had awesome beds.

Tuesday was Ty’s procedure. They put him totally out for these because they are almost to the bone and VERY painful. We got there and we were getting prepped to met with everyone. Nicky kept Grayson for me, so it was a great chance for one on one time with Ty. We met with Dr. Gooch. She doesn’t agree that we shouldn’t do phenol. She thinks he responds well, does great and that even if he has dystonia then we deal and get his muscles under control. She begged us to not start clipping yet though.  We agree are with her second opinion a lot.


We were able to convince them to NOT give Tyler Versed. He literally becomes this VIOLENT, VIOLENT, little boy that pulls out IV’s and kicks and basically beats the crap out of everyone, including me!  They agreed and said we could try it without.

I got Ty dressed in his little gown and his little bum was showing. I went into the bathroom and came back out and Ty had disappeared. He started walking around the halls and happened to wander into another persons room. Her name was Breanna. She had been there about 2 weeks. Mind you, the hospital doesn’t have LOTS of people or rooms so Breanna had been feeling pretty down. Her parents were both there. Breanna had to have her spine fused a few years ago and was having complications with them. One had to be taken out and she was losing a little bit of her ability to do the things she wanted.

As I went looking for Tyler I heard a sweet voice saying, “ My name is Tyler Brown. I am seven. I live in Arizona.” I went in to save the poor people from my child. I was met  at the door by Breanna’s mom. Ty climbed up on this girls bed and was laying there with her. The mom burst into tears and the dad just stared. I thought, “ Seriously Tyler you can’t just do whatever you want. Sheesh.” As I was ushering him out, Breanna asked if he could stay until he had to go. I reluctantly agreed.

When I got back from taking him into surgery her room was empty. She was able to go home. We got a little note from her mom.  The note said that Breanna had been really down and had asked for a blessing helping her to understand how she could be OK with losing some abilities. Her dad said that he felt very impressed that she would find the answer, but he told her he didn’t know when or how. Her mom said that as Tyler was walking around talking to them, Breanna saw Tyler as a answer to her prayers. The mom said that Ty was exactly what they all needed and the reason they asked him to stay was because they wanted his little spirit to be with them as long as they could.  When Ty left Breanna got released and she told her mom that if he could be brave and do hard things, she would work super hard to do her best.

The nurse that took care of us said that she had never met a little boy quite like Tyler. I have to admit, neither have we. Ty is one of a kind. When he was small people would stop and say stuff. We always thought that he was cute. I mean COME ON! We made him. When we had Grayson, people still stopped us. But people still stop us about Tyler. He draws in EVERYONE. He is polite, kind and most of all he NEVER complains about his situation. I do. I do a lot, but never a word is uttered from his sweet spirit.

On the way to surgery me and Ty were wheeled by the basketball court on the upper floor of the hospital. ( Yes you read that right... a HUGE play room on the upper floor of the hospital) He was quickly fixated on going to go play basketball. We went into the waiting room and he got a hat and we talked about what was going to happen and how much I loved him. I told him I loved him to the Mystery planet and back. He told me he loved me to the mystery planet and back and that he was going to visit the moon and come back to him so we could go play basketball.

The second he said he loved me to the mystery planet and back I lost it. I  can’t imagine what I would do without this little boy. My sweet baby. The mystery planet is not even far enough away to show him how much I love him. But he was telling me all about the stuff he was going to do on the moon. That him and Chicka were going to have a bubble gum nebulizer and they were going to fly to the moon and get rocks and come back out and play basketball.

Soon they came in and took him from me. My heart broke. I let them have him and I went to breakfast. Nothing tasted good so I headed back to the room. Decided to take a nap and wait for my Super Hero to get out of surgery. Faster than I imagined, he was back. They left the IV in his hand this time so he had to wait to go play basketball. They said that they have only heard about going to play basketball.

After about 20 minutes and a little bit of begging from Tyler, they checked to see if he could get out of his bed and head out to play ball. 20 minutes after surgery and my son, who had stuff done on his legs, is now going to be going out and playing basketball.

We played for a few minutes, then went and got him lunch and then played some more. He butted into several other games in which he quickly won over the hearts of other people. We packed up our stuff to go and Aunt Nicky brought our brother to come get us. We went to her place to let her dog out and to take a small walk around. Then headed up to have a quiet evening with his Grandparents.





Tyler did so great. He is so amazing. He has YET to complain. He tells me that his legs feel all better now. I have watched the bruises go away  but watched the way he is walking and I cringe, but know that it won’t last forever.

The next day, was suppose to be the day I got some stuff done at 2 colleges and didn’t. So we are doing them all from here now. The rest of the week, will be up soon.........

Spring Break

We had spring break a few weeks ago. ( Ok almost a month ago!) Every time I sat down to write I would hate it, erase it and then go to bed. So now that MORE stuff has happened and I am behind here are some photos of our spring break.

Ty wanted to go down on his back but his legs were NOT having it. A few more scoots and he had it.

The play place was awesome. It was called playtopia. I was glad the boys had on matching shirts and were bright enough to see. It was hard to keep track of them.

Grayson is a bit... um daring. He will do anything that Ty does. He will also do anything he wants to do.

He is THE most determined kid I know. He tries SO hard. He is my hero!

And this kid, well he is a handful and we LOVE him. He is very independent, and very smart!

The love he has for anything that keeps him moving and life in general, makes me SO proud of him!

But this small bundle of energy is a crazy kid in disguise. The smile is deceiving.

Sweaty and hot, but happy and busy!

Before we made it to the park, we had a happy fun lunch with our dad at the Tempe Beach park. The boys fed the ducks instead of eating pizza. But Dallas and I enjoyed our delicious subways and sitting in the sun. Ty was determined that he was going to throw rocks but there wasn’t many. Next time we go, we will be bringing our own rocks.

Playtopia was a great place for us to go. I plan to take the boys back soon!

Things I wish I had known- Cruise style

For those who want to go on a cruise like our Make a Wish I thought I would give a perspective from a mom of a kiddo who is extra special! Might help make some of the accommodations and the wonderful things to do on a cruise AND on a Disney Cruise, even more MAGICAL!

First, if you can, ask for a handicapped accessible room. Even though Ty is not in a “wheelchair” we used a stroller to get him from point A to point B. We didn’t take his adaptive stroller ( aka his chair) because we had Baby ( aka Grayson) with us. So we opted for a sit to stand. With a regular state room you can’t get a stroller in and a wheelchair can NOT, I repeat, CAN NOT get into the rooms. So unless you can carry your said child, get a handicapped accessible room.

Don’t over pack. This was advice given to me by our wish granters. Lisa said that while we think we need a million shoes for every outfit, don’t. Cut down your idea of luggage in half and you will be just fine. Boy was she right. For all 4 of us, we fit everything into 2 suitcases and a carry on. You truly only wear 4 things. Capri’s/shorts, a clean shirt every day, undies and a swim suit. You can even bring something nice to  change into for dinner that is clean etc. But really pack light. If you must or need there is laundry services. Coin operated if you don’t want to pay a fee for them to do it for you.

Unless you have made travel arrangements with the cruise line ( like flight/hotel/ get on the boat) go to walmart before you board the boat. Get yourself a bag/suitcase and fill it with snacks ( licorice, crackers, and WATER) while there is water and soda available all the time it is not in a convenient location. We were on deck 6 and the water and soda was on deck 11. If you cant make a walmart run, bring a big container you can fill with water/soda.

Take advantage of family activities. Sit down and  look at the daily itinerary and plan. Big events=get there 30 minutes early. We did what we did in accordance to what Ty could handle. We did have a lot of down time on some days because it was a lot of stuff and some was overwhelming. But we did push him a few times and we loved it.

Take more pictures and even more videos and don’t forget to have them all together as a family. The boat does have people who take pictures and you can purchase them but they are VERY expensive. So we opted to not purchase and we really did avoid even having our picture taken by them but many people will take your picture for you. Take advantage.

If you are capable.... WALK don’t use the elevators. While it is so convenient to hope the elevator to go up a floor, Don’t. Unless you really can’t walk the stairs, try to avoid using the elevators. Why? Because everyone uses them and when you are trying to take a kid who can’t walk you can’t get IN to one. We had to carry the stroller down a few flights of stairs and even opt to not take it and CARRY, yes WE CARRIED Tyler up or down a few flights. At one point we waited 45 minutes to get on the elevator that was just packed with kids going up to the pool. It wasn’t that we didn’t want to walk, it was that we couldn’t. We stood and waited with many people who had wheelchairs trying to get up to an activity.

While we did opt to buy up and go to the adult only restaurant 2 nights, one of them was so out of our league ( like we didn’t understand the waiters cause they all spoke fluent french and the food was NOT what we even liked.) In fact, I left. I didn’t like it at all. It was terrible. The one night was great but one of them was not. Enjoy a night with your spouse and utilize some time to have a good time!

While we did purchase a port adventure at the Bahama’s it was not what we thought it would be. We really wanted and were expecting to see sharks and what the pictures show on google of the aquarium. We found the local aquarium to be just as awesome.  We should have just done the public beach or just some general site seeing, or heck, stay on the boat. Enjoy the pools and all the adventures they have on the boat.

We were given complimentary port adventures on Castaway Cay as part of our make a wish. We didn’t use it. We couldn’t really use the bikes and there were plenty of castaway floats, but to make the beach fun, we didn’t find we needed anything. We just enjoyed.....

Overall, enjoy. You are on the happiest place on earth-sea version. Enjoy the magic. Enjoy the fun and enjoy watching your kids smile as they see the infamous Mickey Mouse.

Speechless

"If one could only learn to appreciate the little things ... A song that takes you away, for there are those who cannot hear. The beauty of a sunset, for there are those who cannot see. The warmth and safety of your home, for there are those who are homeless. Time spent with good friends for there are those who are lonely. A walk along the beach for there are those who cannot walk. The little things are what life is all about. Search your soul and learn to appreciate."

-- Shadi Souferian

The past 5 years have invoked some pretty raw emotions on so many levels. While I go through stages of grief not unlike any other parent of a special needs kiddo, there are times when it is all OK. Where a daily reminder is not needed. The limp is there and I don't hate Cerebral Palsy so badly that I am sad. It is a time when it really is no big deal.

A few weeks ago I went to our pediatricians office and got paper work for a handicapped parking permit. Up until then I didn't feel we "needed" it. But as the weeks have gone on I am SO thankful that we were able to get it. It makes Ty feel more independent because he can walk into the stores. It has allowed us to encourage him to walk because we are closer to our destination.

So why the speechless.... When using the handicapped parking permit we get LOOKS. Dallas and I try hard to not use the permit unless Tyler is with us. But I find we get the looks when Tyler IS with us. See I get out my kid, put him on the ground and we start walking. We get the look of " Umm who is handicapped?"

The other day we were at walmart. Ty has discovered if we don't have something he wants, we can " go to a store." Sometimes he is good in the store and sometimes he isn't. This particular trip was rushed and he was really wanting to get a book or something that was not on the "list." So he was just jabbering and signing he was Hungry.

We got up to the cash register and the cashier NEVER looked me in the face but STARED at Tyler. I knew she was staring but I figure that it was cause he was babbling weird almost discernible words.

As I swiped my card she asked " What is wrong with HIM?" Saying him kinda distastefully. I just answered back what do you mean. She said " Like he has a bunch of scars on his head and he seems slow"

I WAS SO MAD.

My answer was not the best. I just said he has a lot surgeries on his head but he isn't slow. He is really smart. I grabbed my stuff and left.

Sometimes I don't know how to react. Sometimes I get so taken back that I get a little speechless.

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.

It will be better when....

When Ty was diagnosed with his bleeds we knew we were in for a long haul. In the back of my head I always thought he would be "fine" and he would be one of the lucky kids who had no effect from the bleeds. His was SEVERE and I really thought he would be "FINE."

The media is full of stories of the babies being born early and being perfectly healthy, nothing wrong and 100 percent perfect. The media seems to forget to report the ones that don't turn out so fabulous. ( Remember the McCaughey sextuplets. Most don't because Jon and Kate took over! Some even speculate that it is because 2 of the babies have Cerebral Palsy.)

Cerebral palsy effects everyone differently. No two kids are exactly alike. What works for one won't work for another. A preemie who is 28 weeks, could be in a wheelchair while Ty who is 25 weeks is not. A 24 weeker who has some delays but no diagnosis for CP and is now older while another 24 week twins with only one surviving and has cerebral palsy but isn't in a wheelchair but is still struggling to walk.

Full term babies can be struck with Cerebral Palsy. Babies have strokes in the womb and are affected by Cerebral palsy. Some can't eat on their own, while others can. Others are fine but can't run and jump.

One phrase heard often is " It will get better when... ( insert whatever you wish would get better)" But what I didn't' understand is that the chances of "Whatever" working just like I thought was seen through my own wishes.

Tyler walks.

When he was learning to walk and going through therapy we had a therapist who said he would never walk independent of a walker. She also said that we should hold him back from walking till his gait was "normal." We soon left that therapist and he soon walked on his own. His gait is not normal but I thought all my problems would be solved when he could walk on his own.

Again, not the case. His stamina is not "normal" and therefore distances are really hard for him. He can't be expected to keep up with a normal 5 year old because ( as much as we try) he just can't go that far for that long.

I thought, if only he could talk then it will be all better. While the talking makes parenting SOOOO much easier, it didn't solve all the problems. It gets easier, better and the works but nothing fixes what we thought was "normal."

What did get better, was my ability to cope. My ability to be handle when it didn't get "better" like I thought. We still rejoice in his abilities, we celebrate the milestones and in the end we remember where we came from.

Family Reunion

Taking your child with special needs to family events can be a little nerve wracking. There are so many things to think about ahead of time and so many things that you can't control. I don't always have the ability to know all the details ahead of time in order to be able to make adaptations or make it more "Tyler" friendly. Some activities really don't work and sometimes we have to respectfully decline ( which I end up making excuses for, like we are busy that day or we have something else planned. It seems I can't just be honest) because there is no way to make the activity enjoyable or physically possible. Physically possible, not just for him but for me. For me meaning I can't carry him that long or I I can't find a way to adapt that activity to him and help him do that activity. He is almost to big for that darn stroller and he is getting to be just to darn heavy.

A few weeks ago we went camping down at my parents house. He LOVED camping. He associates grandpa with camping and fishing so when you mention grandpa, grandpa's house or going out he asks about going fishing. We were invited( do you really have to be "invited" to a family reunion in which you belong!) to the Labrum Family summer get together/reunion.

This year we went to Cold Springs Trout Farm in North Ogden. Because it is a trout farm there is more than plenty of fish for everyone. You pay per fish that you catch. You can't catch and release for the integrity of the ponds and you just have to feed the fish for them to start biting. I was really looking forward to taking Tyler because they had places that kids could fish. He LOVES fishing and carries around his fake ( and his real one if we let him) fishing pole all the time.

My parents were driving up early and had to make a few stops and so I asked my sister if she would like to ride with me. We left in plenty of time to get lost ( but we didn't!) and got there before most of the family. It was really easy to find.

We couldn't hold Tyler and his need to fish back any longer, so we went ahead and got a bucket and a pole ( they offered you a pole at no cost!) and went to town. Aunt Nicky was a trooper and was fine with helping Tyler. A little girl was standing by us and she was feeding the fish and Ty was catching them.

My cute sister.. and Ty's Aunt Nicky Mouse

His face is priceless and he gets so excited. We caught 3 fish quickly and thankfully grandpa and grandma got there soon after and Ty was able to take Grandpa around. Ty was so excited. As soon as he saw grandpa he asked him to go fishing.

My dad helping Ty fish. SEE I told you his face was priceless.

We ate lunch and I was able to visit with my Aunts. I haven't seen all of them for almost 2 years. ( A side note: I LOVE my Aunts. My dads sisters are seriously so great. My Aunt Mary and Aunt Luanne showed up at the hospital after I had Tyler. Though there was no baby for them to see they still came. I always feel welcome with them. They both wanted to know about Tyler, how he is doing and everything inbetween. They were and are so understanding and accepting of Tyler. My Aunt Mary even came up and saw Tyler when he was stuck in a incubator. My Aunt Linda Labrum is such a sweet lady and Oh my Aunt Kaye.. Honestly, there was NEVER a sweeter lady. I LOVE her.) While I was visiting with them Nicky and my dad had walked back down and were fishing. We all walked back to the pond and Ty had caught WAY to many fish ( that you can't throw back) and was laughing so hard as he did it. He was so funny. And everyone else was behind him laughing as we tried really hard to NOT catch a fish. We were relived when the few he got were able to come off the hook. He has the biggest joy of just tossing the pole in the water. ( We have a video so you can see him.)

Thanks mom for the video!!

When you are ready to go you take your fish to the shack there and they gut them and filet them. You pay per fish and it is calculated on the length of the fish. They charge a small fee for the filet but WAY worth it. We ended up spending way to much for the priceless look on his face. But not enough that I didn't mind handing over my card.

It was a great day. It seemed VERY handicapped friendly. It isn't hard to get to the ponds. There is no major hills. It is grass but a wheelchair would easily be able to be maneuvered. You can put up chairs on the grass and sit or just sit on the ground. There is shade and water to drink. You can also bring in your own picnic. You can rent the pavilion for pretty inexpensive. Best of all you get a kid with LOTS of smiles.

*My dad is the fish grandpa and Dallas' dad is the campfire grandpa. We had a campfire there on the 24th and Ty asks all the time for a campfire. Like EVERY TIME we see Grandpa Brown. *