Orthopedic Surgery- Again

After our initial visit with Dr. Emily, I became the best researcher in the entire world. I can almost guarantee you that any mother with a child that just got a surgery name, a lab test, a diagnosis etc, does better research than the FBI! You can't underestimate what things we WILL find. And sometimes it takes us to another planet to do it, but we want all the information we can.

So I started with Tendon and Cord Releases. Tyler is MUCH older than 2. But he also is a lot more mobile than most kids with CP. Next, I went to therapists that we had. Tyler's PT, Sam, also had a patient that was looking at needing some orthopedics surgeries done as well.  So we exchanged information.

A surgery that is not new but is new in the CP circle is a surgery know as SPML or Selective Percutaneous Myofascial Lengthening. The surgery seemed like it could just be an answer to a prayer.  However, only 2 doctors in the entire United States do it. One doctor founded the surgery, the other was trained by the founder. I read all I could. And made a list of questions to ask Dr. Emily when we went back to see her when she got our Gait lab studies back.  I joined a group of people who had the surgery done and needed to see what the responses were.

I researched PERCS or tendon lengthening procedures and SDR , or Selective Dorsal Rhizotomy. Both of these are still surgeries in which he may have to have in the future but it will all depend on how well he does and how well his body responds.

The final option that I researched was called a Single Event Multi-level Surgery- or SEMLS. This one is a little more invasive and I really liked what the SPML offered by way of cuts and quickness in getting the kids back on their feet. I also talked to another mother about the surgery who had done it on their daughter. It was only one leg and she gave me so many things to be hopeful about. My issue of the full care and no mobility was really bothering me. She helped eased my concerns until we found out he would NOT be able to move like she had. IT was VERY hard, but she was so kind in answering so many questions. But, we couldn't know anything about our options until our update and report for the gait lab.

The report came in and our appointment was made. Tyler was quickly going down hill as far as his foot was concerned. He had to have his muscle relaxers upped and he was falling asleep in school for several hours. He was crabby at home. It was just bad. And to top it off, we were still without even a temporary brace.  And we were without a plan!

Dallas took the time off work to go to the appointment because he had a lot of questions as well. This surgery is literally HUGE! No matter what, we have to do something, but it isn't going to be the easiest thing. It also takes away so much for Tyler and adds on an extra load for me as the mom and as a family as well. Every single person in the family will be impacted by doing a surgery on Tyler.

At the Hospital we were checked in, weighed and I was nervous. So nervous that I was so glad Dallas was there because I was not able to be where I needed to be. This is also where we learned that Tyler has FINALLY gained 1.5 pounds. That is the first legit weight GAIN in 3 years. We were loaded into our room and then we were taken for X-rays. Grayson and I sat in thew waiting room looking at X-rays on google images ( we were selective but dang.... those are funny!) Tyler had a TON of X-rays and Big Bird did and Tyler got Grayson a sticker or 2.

The appointment went well. I ended up in tears multiple times. His study was done and his lab was looked at. His hips are fine ( THANK GOODNESS), he doesn't have Scoliosis ( thank goodness), and he is still small and has not hit puberty yet (Hooray!). The bad news: when combined with his gait results and his X-rays the option for surgery was pretty much taken off the table. Before it felt as though there was an option of yes or no. Now there was a much heavier air of " We need surgery and NOW. Now to figure out the best one.

I asked about the SPML and we weren't even able to qualify for it, and I kind of felt laughed at for asking.  The best bet for Tyler would be the SEPML or the Multi level surgery. With the gait lab and X-rays and how his legs work and how things look when that body fires, it fires in all the wrong place  and at the wrong time and it just makes for a terrible looking walk in all the wrong places. It also makes it look really VERY painful.

At the time of the appointment Tyler and his feet were so bad that he was literally walking on the top part of his foot. it was REALLY bad. He also NEVER complains of pain, and he complained everyday. I thought for sure that we would still be sent for braces but we weren't.

We got all the questions answered we could think of. The ins and outs of the surgery are this: Tyler will have whatever tendons and cords released that they think he needs when they get into his legs. His femur will be rotated on his right leg. They will put a plate in it. His feet with have some reconstruction done on it, but to what extent we just don't know until they get in there.

Recovery time: 6-8 weeks non weight bearing. Casts. Wheelchair. He cannot, CANNOT put any weight on his legs. So we will be adding a few new workers to our house. ( If you live in Arizona and need a job!!!! Holler) Tyler will be in the hospital for 3-5 days. After the 6-8 weeks, he will have therapy 3 times a week for the next several months after that.

Summer time this year is only 6 weeks. Tyler's surgery is going to be on his last day of 3rd grade. Hoping to get this all done for the summer makes it so that we will have a loner surgery time. Total Surgery time will be 6-9 hours. It will be over a holiday weekend.

That was a lot of information!!! And dang... Surgery stinks!!!

Easter 2014

The last few weeks of April were so lonely here at our house. We lived without our dad for about 3 weeks. He would sneak in at the wee hours of the morning and head out super early. I was the lovely single mom. We also lost a worker and one was leaving so we were getting interviews in at the same time along with all the normal things going on. It was also a time that we had to get summer programs up and going for Tyler. We also had a new ISP AND a new IEP. It was crazy.

Tyler got out of school the Friday before Easter for Good Friday so we decided to spend the day at the local indoor play place. Not only did we have a rainy day, but we are also getting into Hot season so going to the park and spending lots of time outside is coming to a close. So the indoor play place it is.

We found that Tyler is REALLY good at Air Hockey. He shouldn't be able to do it almost at all but he really did. And did really well. The other kids that were at the play place didn't know that he can't see and they were playing as hard as they could. He spend a long time there.

Grayson loves to pretend play and this kitchen was right up his alley. He did this for most of the time we were there. He really liked it. He would tell me he was "Tooking" and would hand it to me or anyone that was around to eat. I think we need to get him a kitchen set for his birthday.

They also have this awesome teeter totter that is shaped like an airplane. So between the airplane and the kitchen, Grayson had such a great time. I am pretty sure that Tyler spent the entire time NOT on the play set but playing basketball and air hockey the entire 4 hours.

It really was a great day.

We went home, had some yummy burgers and got our eggs boiled. We then got all of our Eggs filled for the ward Easter Egg Hunt and Breakfast at the "Island park" ( we live in the "Island") and dropped them off.  We ate yummy pizza for dinner and off we went to bed for our Easter Bunny to come on Saturday.

Oh, but first we Facetimed our dad... And for those who haven't seen him in a while, well, yes. He has lost weight.. A LOT of weight. (And yes, he has been REALLY sick but right now he is doing amazing!)



The Easter Bunny doesn't really bring Candy to this lovely house, so our Easter Baskets were not full of sugar. But we had a great time because the Easter Bunny left foot prints all over our house.

So the Easter bunny comes on Saturday in our house for several reasons. 1) Tradition. My mom grew up in a place that we went to the Desert. We used our colored eggs for "Eastering" and had our Candy to snack on with our extended family. By extended, I mean like half the town. My moms family- Sisters and cousins, and my second cousins, and we all went to the same place every year. So the Easter Bunny came on Saturday. 2) How else do you have a basket for the Easter festivities if the Easter Bunny didn't bring you a basket. 3) I hate doing it on Sunday because the whole meaning of Easter is focusing on Christ, and that is what we do on Sunday. 

We went to the Easter Egg hunt, came home. Hung out with our dad and had such a good day with our toys and Easter stuff. 

Sunday was a good day. We cooked Lamb, and went to Church. Grayson turned into a Cannibal at church and took a big chunk out of Tyler's leg and  threw his drink and food truck at an unsuspecting dude sitting on our bench. I was MORTIFIED. But the focus was not on us. But a time to be more thankful for our Savior and the Sacrifice made for us. 

Llama Llama Holiday Drama

Our new bed time routine in Arizona has included a few books being read along with the flash cards of the 100 words most used in first grade. Ty does amazing with the words. He also gets to pick his 2 books and sometimes 3. He, if he got a high mark for the day, gets to watch the ipad with whatever he wants for about 20 minutes. But the book comes first.

I have never read him the Llama Llama series and I know he has read them at school but he chose this book at the book fair at school. We have noticed how excited he has been about Christmas so we have started reading this book, very regularly.

I really like this book. It really does ring in the new year with a twist of how a sensory person like Ty can’t handle the rest of the holiday. I don’t think that he catches on that little Llama, just can’t get a hold on the excitement which ends in a meltdown.

But the sweet Mama Llama make it all better.

Those who want to read it, do. It really is like how our life is when we do holidays. There is SOOO much anticipation that just a little bit happens and we are all done. Sometimes we melt other times we don’t.

So, Bring on the holiday....

Llama Llama Mamma!

Halloween 2010

Usually I am so on top of Halloween that we have Tyler's costume coming just after his birthday. This year, not so much. I can't believe how much the last year has taken a toll on me mentally and frankly I was exhausted from the drama of his birthday and some other issues to really want to deal with anything.

But a few weeks ago we went to the party store to check out costumes. We had been to the Spirit Halloween store but since I didn't want him to be a "mini pimp" ( seriously at the STORE they had a kid pimp costume!)I had to find something else. Thankfully, party land had costumes and Tyler and I went to figure out what he was gonna be for Halloween. I had a vampire or a pirate in mind but he chose what he wanted himself.

He decided that he wanted to be Thomas the train! I wanted to get him to try it on first before I spent the money so we walked around the party store in our costume looking for a Trick or Treat bag. He wore it, so we bought it.

This is where the "Special needs" come in. Because he has comes with sensory, understanding and the works "issues," we left his costume out where it was accessible from the time we bought it. We made a BIG deal out of his costume. We let him play with it when he wanted, put it on when he wanted and encouraged him to wear the hat. Then we did the buy Halloween movies, watch halloween movies and read LOTS of Halloween books. We knew he was getting some at school too.

We did the Pumpkin patch and really played up the Halloween, jack-o-lantern and pumpkin difference and Fall in general. He has LOVED all the leaf stuff at school and the preparation seemed to have worked.

Preschool morning he had a party ( on wednesday!) so he got his costume on before he went to school but decided he didn't want to wear it on the bus. ( Fine by me. I was worried he would trip!) I knew I would be coming to school so off he went!

The " Morning" of school!

I got to his class just after the party started and found him sitting waiting for the craft. Once I got there he pretty much was ready to just have mom. ( OH gee! Who knew!) He happily won musical chairs cause he is pretty much awesome like that! Then he was all done. Home we went!

( playing musical chairs)

Friday we spent the afternoon ( literally) at PCMC. It was their parade day and trick or treat party so candy was being handed out left and right. We did our obligatory FOREVER wait and as soon as we could departed!! ( A HUGE post coming up about the CRAP we got there) Ty didn't want to wear his costume so we left before we had to listen to one more scream or wash our hands any more.

Saturday we spent the day making treats and tying to think of a way to get them to all the Aunts/cousins and decided that we weren't going to this holiday. We were a little over the idea and decided to forgo and eat the yummy stuff our self and let the rest go to waste. ( long LONG rant that MIGHT follow but you want the details.. email me!! Or find me on Facebook!)

We Snacked on apples and finally got Tyler to try some Carmel dipping sauce. He wasn't to sure at first but liked the apples. When I got him to lick it he was OK with it. ( It was fat free, so stop judging...BUT the appointment on Friday.. they would have LIKED me to add FAT! boo)

After the best dinner EVER we got us all ready to trick or treat. Dallas got Ty dressed and I tried to snap pictures but he kept telling us he was going to the " Big Halloween party" and wanted to go. We have worked on saying Thank you and trick or treat. But instead he got a little worried and was SOO stinking cute instead.

After the street we live on we swung back by to "See" if Tyler was done and he was not! So he got some treats from Dad and off we went. We ended up going almost clear around the loop at our house. I was so thankful for Dallas who was able to make the "end" of the Halloween party easy. We told him that now everyone was coming to his house for the party and he was willing to come in and take a bath.

Then it was night for EVERYONE and he went to bed telling us it was the

"Best HALLOWEEN EVA!!"

* I am a very sarcastic person in real life. Please realize that I am not meaning anyone/thing/incident and have tried to put myself and my feelings into my own blog. Any issues I would love to hear from you at Nancy.brown05@gmail.com.*

Fireworks- a sensory and vision mess

Ty has been doing somewhat better. I cringe when I type that because that probably means that he won't be doing so well today. Yesterday he was almost back to himself and we were able to not have to give him pain medicine. We still give it at night so that the morning time isn't as bad.

We have also been going down for naps. Both of us! When he doesn't get a nap he crashes way late in the afternoon and then won't sleep well at night. But before noon he can still get his sleeping in and still be able to go to bed at night. We have also had a little bit later bed time for Tyler.

He has been up around 5 almost every morning. This morning I laid in my bed with him at 5 and he stayed asleep another 2 hours. To bad Dallas didn't!

As we have been gearing up for this weekend and figuring out how and what we are doing, we have realized that we are not sure how this firework thing is going to work.

Ty is almost 5 but has never been to a firework show... EVER. The last 3 we were in Arizona. So this would be the first year it has been under 110 degrees to go out and watch them. Not only that but Ty has sensory issues with noise. We have no toys in our house that talk or make noise. He gets upset. Like way upset. So we have always been a little cautious about taking him to the fireworks or bringing any home.

The other big one is he can't see. According to his vision doc, the vision acuity he has would make it so that he can't really see the fireworks. Of course we would HOPE that he can see them but we aren't sure.

So what do we have? We have LOUD noises that he can't see where they are coming from. We feel like it would be a sensory meltdown in the making. We are going to try, however, to have him participate in fireworks this year.

This year we live by Thanksgiving Point. They do large fireworks in Electric park. That is the closest part of the park BY our house. We have a great view of the fireworks and will be able to see them and they are far enough away that he won't be scared of the loud noises and music that usually accompanies firework shows. We have some fireworks to do here that we can show him so that he can see them. We have invited Dallas family( parents and sisters) and any of mine that want to come to come and celebrate with us.

We are really excited to have them come. Ty has so much fun with his cousins and we hope that it will make for a little bit less of a sensory overload for him. If things are to much for him he can watch a movie in our house while we still get to enjoy everything that kids should get to enjoy.

We appreciate the willingness of our families to understand his issues and be willing to change plans to help accommodate his issues. We are hoping if he is OK with them this year that we can go back to the "old" way.

What do other parents do to help your kiddos get through a VERY sensory rich holiday?

Easter Baskets

Ty is not the typical kiddo! We didn't do the traditional candy everywhere but we made him a basket FULL of stuff that he likes. And stuff he likes A LOT!

He got a few movies, some suckers and some balloons and bubbles.

And along with all the goodies Ty woke up with a COLD! Runny nose, VERY low grade fever and just over all blah. He didn't even want to color eggs.

So the "Holland" Mom thinks. wow.. this sucks and we thought it would be better than last year.

And then I think , is it always gonna be this way.

Then I think... Oh well. We did our best.

Valentines And Preschool

Tyler is a lucky kid! He gets to have 2 parties for school. You see there are 2 sessions on the special people preschool. Depending on what you qualify for and need depends on when you go. A majority go 2 days a weeks ( generally Tuesday/ Thursday because those are speech days) But our luck and incredibly handsome MIRACLE and HERO goes to ALL 4. He gets to experience PT, OT, Speech, adaptive PT and vision. So every single person who comes to their class for extra therapy is there for Tyler. So really the other kids are getting MORE for the time :) So Our kid is REALLY delayed that we have him chuck full of people to *help* him be better. And all the other kids benefit to!

Anyway, valentines is coming up so the Tues/Thurs class is having their party and on Friday the Wed/Fri. are having theirs. We belong to both so double team the valentines.

We decided to do something homemade along with the cards so we made red rice krispie treats shaped as hearts.

In pictures :

I make my rice treats in the Microwave instead of my mom's way of on the stove. There are several reasons. One, it takes longer and 2 I don't know how to do it that way without burning something. 2-3 minutes in the microwave with half a stick of butter and a bag of marshmallows. Stir after 2 minutes or so and put it back in for the remainder of the time. It will be boiling. I PAM ( she is my best friend) spray my spatula so it doesn't stick to anything. Add your red food coloring to the marshmallows to your liking.

Add six cups of Rice krispies to your bowl and mix, mix, mix till it is done.

Put in a MEDIUM sized cake pan. Medium because the regular size makes the treats a little thin and who wants to eat thin when you can eat YUMMY more. I chose the dark red cutter because it is metal and I used Pam once again to help out! ( Pam and I are FRIENDS!)

I put them on a clean pan to keep them out of the way and allow them to get hard. Only Rice Krispie with JUST butter and marshmallows will harden a little. I have another recipe that I will be making tomorrow for the rest of the family that have Peanut Butter in it. School isn't the safest place for PB!

I found these amazingly cute zip lock baggies at the dollar store all ready decorated with the cute hearts. It saved me some time by having to tie a ribbon and make a label. So in they went. One batch using the medium pan made about 17 hearts. Larger cutters only yield about 8.

And the end result is enough for both classes. We sent off Max and Morgan's but they didn't get the rice treats ( they got scrumptious other stuff) and we will have to see if we can deliver the rest. It might be nice to have Tyler give service by giving to others.

So that is our Valentine day! What did you do? We also have cute mickey mouse cards coming.. So beware!!!!!

*For the Labrum's in my hormonal state of being I sent 2 packages on purpose but I may not have gotten the right name on the package. They are the same but a Fast Mickey card swap might be in order... please forgive me.*

The LAST eve of Prematurity Awareness

I have slacked the last half of the month because life with my baby ( that is a big boy) got hectic and nuts. Its all been a bit overwhelming and a little nuts!

His sleep study results came in the mail but we have a follow up on Thursday so I have lots of questions before we share the results. BUT mainly he drops pretty low on his oxygen and needs some requirements to keep them up. We don't know what it is yet but he wakes up about 5 times and hour from not breathing and wakes up 5-7 times and hour for his legs moving. His average sleep is about 6-7 hours.

We are still doing therapy at Shriner's and hope to be able to get Tyler on disability soon so that his insurance will cover someone a little closer or even as close as Riverton at the new hospital. I am hoping that the shots and the casting will work really well and we can relax a little and the therapy will help the kiddo out.

His speech is coming along really really well. He is doing most of the alphabet with sounds. There are still a few he hasn't figured out but he knows what they are and can match them. Its getting a little easier to communicate but we are still limited on his words. He can't seem to put them all together to form words. And some of the sounds are just sounds that he is imitating the SOUND but not how it is really said. ( that probably doesn't make sense. A example is the sound the F makes. He sounds like he is making snot and boogies.)

We are getting our second round of h1n1 this week ( hopefully) and have been battling a consistent battle of strep. Tyler has been surprisingly fine but Dallas keeps getting it. We don't know if Tyler is the carrier or me or Dallas for that mater but man I think we are done with it. His little sister who is staying with us came home with it today. But Tyler and I have seemed to be ok ( for now!)

I will have to post about Thanksgiving. I am still recouping my emotions from getting to see Max and Morgan and Barrett and Chantel and having them gone. We are gonna miss them.

Stay tuned for more Holiday fun and some awesome pictures from the weekend.

Halloween pumpkins

I wanted to take Tyler and Dallas to a pumpkin patch. It didn't happen but me and Tyler went to the next best thing... Walmart! We bought 3 pumpkins last night and planned to carve them all today. We got 2 of the 3 done.

Tyler was not interested in it. He touched the guts of it but he was not interested to sit down and help doing anything. Instead he preferred rocks, and sand.. LOTS of sand. I found it all in his hair.

In the middle of carving Ty decided to be mean and crabby so we went to take a nap. Where I have now found little grains of sand in my bed. We went back outside and he played the rest of the sun up time and I carved a pumpkin.


After dinner we took a shower and got the rest of the sandbox out of his hair and went to undo the lights we bought to decorate the window. He LOVED them. At first he was not so sure but he was so excited. He didn't want them to touch his neck but was fine if I had them. He also likes to use his mouth on things. We were told it was because of his vision so he was done on his hands and kneed licking the lights.


Tomorrow is our trunk or treat with the ward and then on Friday we will go trick or treating on our street, spend the night answering the door and playing in the lights!

I can't wait for Christmas. He is going to love it. We have a few activities to do and I am sooo excited.