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.

World Cerebral Palsy Day

Cerebral Palsy is  THE MOST common disabilities in children.

1 in 500 will be diagnosed.

Of those  diagnosed:

70-80% have spastic muscles. Which means they are stiff and tight.

1 in 3 are unable to walk

1 in 4 are unable to talk

3 out of 4 are in pain all the time

1 in 4 have epilepsy

1 in 4 have a behavior disorder

1 in 2 have some developmental disorder

1 in 10 have a severe visual impairment

1 in 4 have bladder control problems

1 in 5 have a sleep disorder

Tyler has Cerebral Palsy. It effects his walking and talking. He has epilepsy. He has anxiety and other behavior disorders that we are working on this year. He is developmentally delayed and has severe visual impairment. He has no control over his bowels or bladder and has a sleep disorder not limited to periodic limb movement disorder and the inability to turn off his brain enough that he seizes more 45 percent of the night.

There is not one “normal” aspect of his life.

There is no cure.

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!

How To Have An Amazing Visually Impaired Easter

Trying to provide amazing experiences, especially around the holidays, for kids with extra needs is sometimes a daunting experience. Sometimes there is no way that I can adapt it to our needs but sometimes, after many hours of creativity ( and pintrest!) I come up with a GENIUS way to make it work.

Because of Tyler’s visual impairment and sensory issues there are a few things that we can cross off our list at Holiday times. We found at Christmas that he had some major anxiety issues that went hand in hand with seizures so now that we were getting those worked out we wanted this holiday to be just fun.

I couldn’t figure out what to do. There was no way that we could handle going to a large Easter egg hunt because him being put in the “right” age group is pretty much insane. Plus asking them to put a almost 7 year old with the 3 year old looks pretty silly as well. So we did what any Auntie would do. I text ed my husbands sisters with kids and asked if they wanted to participate in a Visually friendly, immunocompromised/immunosupressed Easter egg hunt. ( AKA just us, no extra germs, that I can adapt to our needs and still make it fun) My Sister in laws kids are the same age and younger than Tyler so it works really well. Though they opted not to, we went to our second option.... THE KIDS!! ( Kayden, Koy and Lexi) We invited Max and Morgan but they had a funeral to attend.

As soon as I asked my Sister in law if they wanted to do it I bought the stuff to make some pretty awesome eggs with no candy since 2 of the kids don’t prefer candy and  had stuffed eggs with cars, crayons, princess stuff. When they opted not to do it, I took out that stuff and just put in my left over change. Probably a good ten bucks worth. I bought a 70 count egg basket and we opted to just have Kayden and Koy and Tyler look for eggs. Lexi got a steal of a deal with CASH eggs but she had to work extra hard.


The 70 eggs that i purchased had a variety of color. I picked 3 colors out and made sure we had equal amounts of each. Then I found 3 different types of sports eggs and made equal ones of those. Those are the ones we hid for the kids.

Instead of making a bunch of eggs and saying have at it. We told them you can only collect your color of egg. We were able to hide the eggs according to skill level and vision level and all had a wonderful time.

Ty came home with 27 eggs and each egg was hidden to just the right level of him. The others had the same experience and they all enjoyed the left over change I had and not one quarrel of to many eggs were had.

To experience the excitement of coloring eggs, we let him go at it. We let there be a mess. We let him re dye the eggs 3 different times. We do whatever he wants. He even gets to use his hands. Because really, who cares. He will remember when we did the eggs exactly how he wanted them to be.

A Dentist visit ( A few weeks ago!)

Handy Manny has a neighbor named Mr. Lopart. Mr. Lopart owns and runs a candy store with his cat Fluffy. He is an overweight, balding man who is always trying hard to be the cute Mexican handy man but fails miserably. It shocked us when, after watching an episode, that Tyler called himself Mr. Lopart. But you see, Mr. Lopart hurt his tooth one episode and needed to go to the dentist. And so the name was born and Tyler's need to go to the dentist was born.

In December we had an appointment to see the dentist. You see, Tyler -the Professor- the Mr. Lopart- The handy Manny- the Winnie the pooh- the parrot- the boy REALLY wanted to go so we made the appointment. He got sick. We had to cancel. I put it off until i was sick of hearing it and made it.

The day came. He was excited about it. He was fine with going and was even fine with the idea that he was going to see the dentist. He was happy as he walked in and then slowly a tear formed as the "lady" came to talk to him and count and brush his teeth. His sweet lip quivered and 2 tears rolled down his cheeks.

The "lady" just sat and talked with us and we got a little more comfortable with "lady" and waited until the dentist actually came. While we were talking Ty kept saying thank you Dentist Lady. He thought she was the dentist. He would tell her something and say " Right dentist Girl."

The dentist caused a small meltdown but overall Ty did pretty decent. He had no cavities that they could see and his teeth looked good.

We survived the trip to the dentist....

Sensory Processing with anxiety on top

Ever since our Infamy day our lives have changed. Something about life right now is not right. It is off balance and kinda out of sorts. But not just the balance. But The brain. Ty's brain to be exact. It is like in the last month I have gotten a child I hardly recognize. It is heart wrenching, frustrating and OH so sad.

We have known for awhile that Tyler has some sensory processing issues. For those who have spent any time with us and have tried to do something that involves talking toys or loud toys, you have watched the response and know it isn't "Normal" but we have easily adjusted to a quiet house hold and we don't always notice. There is no stroll down the toy isle for us. It just doesn't happen. He hears a talking toy and it is all over with. But what we haven't ever had was the meltdowns to the point of anxiety over taking him until he can get home.

In fact, he doesn't even want to go anywhere. Normally if I said I was going to the store he would be all over it. Now, he says " I will just stay here with Dad. You go all by yourself." If we tell him we are going home ( after we do finally get him out) and need to detour, we will literally be facing a new world war.

Case in point: We were in Logan and we were leaving a very busy, full house (sensory overload #1) and said we were going home. On the way down the canyon Gray's started crying (see above sensory issue). We opted to pull into a gas station to nurse. We stopped, we were not at home, screaming Tyler melting about wanting his home NOW. Gray's, a distract able nurser to start, wasn't having it and thought it was a game. We started down the freeway. Gray's cries harder, we pull over. This time enticing with drinks at a gas station. Meltdown central in the parking lot. The drive home was more "wash and repeat." At one point, Gray's was crying, Ty was covering his ears crying and I was in tears.( It's no wonder we need xanax in this house.)

So the sensory stuff isn't new. But the not being able to handle a change in routine is bizarre. The anxiety is intense.But the hardest is the stuttering. But it has changed. Meaning he now will not even get the first sounds out and stop and hide his eyes and say " oh dear" unless one of us can help him. It gets incredibly bad when he is over stimulated or if he is anxious. One of us will help him with the word he is looking for because we generally know based on what is going on around him. But it is sad and frustrating.

He has a one track mind. That part isn't new either but how intense it is is VERY new. Case #2: One day he got in his mind that he wanted to go to a big construction job. It took us a while to figure out what in the world he was talking about. Finally, it dawned on me he wanted to go to the discovery museum that has a big construction job. I got out a picture and and asked him what it was and he got excited and I had guess right. He wanted to go there. We couldn't go the first day he asked. He literally asked for 3 days. Finally we couldn't stand the 5 minute intervals that accompanied the asking so we took him. But it hasn't stopped since finding out he was going on a wish trip cruise either. Only the beach doesn't have a date so we find our selves answering a MILLION times a day that we aren't going today.

His one track mind includes the dentist too. But he can't go till after the 1st of the year and he literally asks about seeing the dentist at least 20 times an hour and all one right after the other. The sad part, I will get his appointment and he will be all excited about it and sensory problem #1 will come into play and 2 people will end up in tears.

. We have to take inventory of his body every night. No really. We count the bruises and new open sores so I know what to watch for as far as breakdown. He can't tell us he is wet or dirty ( another sensory issue.. he can't smell things that are foul. Like if we toot and it stinks up the house or poopy in the potty he doesn't say eww... and he doesn't gag or notice) so he doesn't notice if he is wet. Which is fine, but I have to remember to ask/change/ check more often than normal. But he slides down the stairs on his tummy. He has no extra fat on his body so his hip bone ( where a diaper sits!) is a raw open sore. He has basically rug burned a hole in his hip. He doesn't feel it, doesn't say a word. I put cream on it at night and he keeps doing it.

In the past month his feet have gotten huge blisters. Like fingertip ( of mom's) big on his big toes on both feet. One was a blood blister, one was a regular blister and one was a huge cut. Do you think he notices? Nope. Not at all. So we have kept shoes off as much as possible with socks on to avoid dirty feet.

He doesn't notice his hands are filthy. We do of course and wash them for him but again he could careless. He doesn't like his hair combed and never has so he looks like a dirty, disheveled little kid.

All of this, in a course of 4 weeks makes for the wall of reality to suck. Not only do I as the mom deal with nightly anxiety because of my fear of another seizure, but the daily meltdowns, stuttering, repeating and the works are my job to listen to and most importantly show him that he is important and help with the words, reassure that we ARE going to the beach and comfort during a meltdown. It makes me realize that it will never be normal for us. That the idea of possibly wanting more children is out the window. There is no way that another child could help the sensory over load that even a pretty good natured Grayson brings. Not to mention the demands on me as the mom ( nursing, crappy sleeping children etc) to bring it to the table with therapy and the works. It makes it very hard and very sad as we stand in the normal world and the special needs world.

What makes it even harder is the lack of support. Meaning, people say dumb things. I have no place to go to someone who is sitting in my position who says yes. its OK. In stead they say dumb things. Well intended dumb things. I don't have the support of going out on a date with Dallas, I don't have the support to have someone at the appointments that we go to because Dallas has to work. I don't have the support during surgery and shot times and I don't have the extra arms and attention to give Grayson. I have one friend I can go to that "gets" it, but I don't have a familial relationship to do so to. So it is lonely.

D doesn't have those things either and he suffers silently when I am emotionally spent. Grays suffers when I am spent. My goodness it is his food supply for Pete's sake. Tyler is busy and wants friends to play with. Wants to go to people's houses when he is bored, but doesn't have the social skills to call and ask. Honestly. It is a VERY lonely road.

Tomorrow I am going to post about Welcome to Holland and the REAL Holland.. You know, the being stuck in the airport not wanting to be in Holland that I recently ran across. And really, we could use a lot of brain prayers. That things are truly calm in there. That we can get this figured out. That we can sanely... make it through the storm.

Penguins, Trains and Pizza

After feeling trapped and blah, Tyler and I headed out! I asked him if he wanted to see Dinosaurs or penguins. Pretty quickly he answered "Penguins" and we were out the door. We took D a drink of pepper and a treat ( Ty LOVES taking his dad a drink of pepper) and went to see the penguins at the aquarium.

We went straight to the Penguins and he was NOT having it at first. I put him up high to see them because they were eating and he had a FIT. I thought, " seriously T. I just spent 20 bucks to get in for you to freak out!!" So I let him down and sat there by myself watching the penguins. When more kids came over and the penguins started to swim he LOVED it. We watched for awhile. Went through a little of the aquarium and played with the sting rays and watched the sharks. He loved the new turtle they have their and we always LOVE the jelly fish. We had to hit up the penguins one more time before we left.

On the way out the door the strategically placed gift shop was there. Big and center was the penguins. Ty wanted to see them so we walked over. He said " Pretty cool. We should take him home." We found one he would touch and brought it home. He said " Fank you mom-e for helping me to take the penguin home." ( I Love him!)

For lunch I thought the best thing to do was go to the mall. Options for everyone. Plus after we could hit up the kids playground and head home. It would take the blahness out of the day. We had a fun pizza date and headed downstairs.

They have the cutest mini express Train that you have to walk by on the way to the play yard. I have never seen Tyler so excited. He even asked to ride it. So we got on and rode away! We were able to ride a lot because Tyler won over the driver and we just kept going. He loved it. He would just sit there and look around. We played for a bit in the play yard but all he wanted was the train.

It took a little bit to get him to leave the train and we had a small meltdown outside. He was determined to con his way into getting a movie but I was strong and promised one another day!

I love days where it works. There is always a hesitation when it comes to our ability to see things and do things. He won't wear his glasses and the sensory overload of sounds is sometimes to much. He can't handle hearing the noises come from places he can't see. We really struggle with a proper sized stroller. He walks so well but he just can't make it all the way. It's hard to see him struggle to move his legs around and need help on things like the slides in the play areas but I am thankful he can do what he can do.

Next week, I think we will try the dinosaurs. As it gets warmer, I think we will have to go to the farm and even try out a inflatable bounce place.

Here is to fun times when it is cold.... AND school.

Sensory Santa

One thing we RARELY do is go to the mall. I had never thought about it until we had Tyler but aside from the germs, it is a sensory overload. The smells, the sounds, the stuff to look at. Sometimes it can be a bit much.

Late last night I remembered we had a neurosurgery appointment and knew we would need to leave early because it was storming, all night! I got Ty breakfast and started to get ready. The snow was PILING up and I decided to call and make sure I got the time right. Just as we were getting ready to go out the door they called and said that I was amazing and forgot the RIGHT date and didn't have an appointment today and that we would have to reschedule.

Instead of disappointing Tyler I told him we were going to go look for a present for Daddy. He got super excited and starting saying " Going to find a Christmas wish box for Daddy." ( Little Einsteins movie. CUTE movie!)

We drove through town because the freeway was a disaster and we ended up at the mall. I was super curious to see how he would react and there is only ONE freaking Disney store in Utah. We walked the mall and went to the Disney store. He was NOT loving it. There was to much noise. We left fast.

We walked past Santa and I asked the people if Tyler could walk up to Santa ( seeing that there was NO line at ALL!!) and see if he liked him before I paid out a million bucks for a picture. At first he was a little not sure but he talked to him. But wouldn't sit on his lap.

We left and headed to the play area. We met a nice lady there who also had a Tyler and a twin Tanner. Tanner has hydrocephalus and a rare brain disorder. We ended up talking for a while and found we had the same neurosurgeon.

After the play place I asked Ty if he wanted to get a picture with Santa for Daddy and he said yes. We headed back through the mall and paid the million bucks for the CD. Timidly walked up and Ty sat on his lap. He told Santa that he wanted a Handy Manny big job movie in his Christmas wish box! We even got a few photos.

We left through Tai Pan trading and Ty found himself a wish box. He was in love. I was glad to be out of there. Ty did really well but when we got home from our adventure he had a few meltdowns until he was all by himself where he could kinda let his emotions loose.

The things we adapt to seems so weird when I look back and think that we don't take him certain places because of what effect it has on his system. Life has a funny way of adapting to make it work.

"They" Say kid wont starve themselves

We have all heard the saying " They say" or "They" do this or I have heard "they" say this... who exactly is this THEY!

Well "They" say that kid won't starve themselves. I am telling you "THEY" are wrong. As previously posted Tyler is a VERY VERY picky eater. Since he was little he has had eating problems and gaining weight has always been an issue. We brought home our 40 week gestation baby at almost 5 pounds. He is almost 5 and dropped to 28 pounds (AGAIN) after his tonsil surgery. He eats about 5 things regularly. He doesn't really feed himself. ( Though yesterday he did feed himself applesauce and ketchup) He also takes a REALLY long time to eat. Like over 30 minutes. For those who are not aware after 30 minutes they start burning calories when eating.

Because he is constantly moving and his muscles are tight he tends to burn calories more than a typical kid. So ( sadly) when he does eat because he takes so long it burns off faster. He is also not a fan of many fruits or veggies and due to texture issues he won't drink juice. He drinks soda ( GASP!!! I KNOW!) He hasn't had milk in over a year and juice. Um no.

When we were introducing solids we were power packing and adding calories so we were adding things like Butter, fat and calories. Sure makes sweet potatoes YUMMY when it is packed with fat. When it isn't pack with fat he won't touch it.

So, we hear they won't starve themselves and today ( for the millionth time) we put his hunger to the test. He didn't ask for lunch so I didn't give it to him. I offered. He said no on everything. I ate and offered again.

We had to run to home depot ( my new favorite store) and he was SO stinking crabby. He was hungry. I knew he was hungry. I asked him if he wanted anything to eat. He said no. We stopped for a yummy crushed ice Cherry coke ( cause who doesn't' want one of those) and he still said he didn't want anything.

A HUGE meltdown in the driveway and I asked AGAIN if he was hungry. He said no. I made him a pizza. Still crabby and sad but he is eating it. ( and chips but food is food.... isn't that what "they" say!)

Ty is not as bad as other kids. Sometimes he eats and eats and never stops. Or he eats when he is bored. Probably not the best combination. But for sure I think the trigger to say he is hungry is not quite right.

So I don't care what "THEY" say. I am thinking "they" are wrong.

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?

A haircut

Getting a hair cut is a HUGE thing in our house. We literally can't plan anything else BUT the hair cut.

We talk about the hair cut and we make it fun and he still FREAKS.

This time I offered him a Mickey Mouse. I told him we would go shopping till we found one. What a ordeal.

(Ty PRE Hair cut last Friday)

We scored hair cut

And scored the Mickey

I got put on mom edge.

Sensory Overload most call a Haircut

Holy mother of overloads! Ty just had a majorly sensory overload. Holy smokes. Tyler was in desperate need of a hair cut. Like he REALLY needed to get rid of the wings he was sporting. He is not the kid that lets you just comb it and his hair isn't really the hair that will stay down even with gel and Mousse.

See what I mean... WINGS... WINGS. The kid could fly away.

So, out of the need to get out of the house today we braved cookie cutters hair salon to get a hair cut.... I told him we were going there. I told him that it wouldn't hurt. I told him he needed to be brave. He ran off and played...

THEN came his name being called. I think we scared the poor mom waiting to get her kids hair done. As I calmly HELD MY CHILD DOWN and tied him into the chair and then HELD him down more she kept looking and asking if we needed a sucker or something.

I was surprisingly calm. He was not surprisingly horrified. The dude doing the cutting though did a great job.

We went ultra short. I am usually not so OK with ultra short but I am more so no OK with the drama that comes with it. The other not so OK is the scars. I don't like them showing. He is brave without battle wounds.

A sucker and balloon curbed the tears after.

He looks handsome!

( sorry for not the WHOLE head showing. Once he knows his picture is being taken he jumps around like a wild monkey. But you get the gist.. NO MORE WINGS!

Did someone say SLEEEEP!

Today was a good day ( and a bad day) but mostly good! Tyler was and has been such a good kid. I wondered where this angel had been hiding! I hope it continues but here is the stories!

After Tyler and I being sick it seemed to take forever for him to totally bounce back. Sunday afternoon I wouldn't let him watch a movie on the computer AND the TV so he got mad and laid down to pretend to fall asleep and he was OUT for 2 hours. I really thought we were in trouble for the night since that seems to be the trend with Naps. BUT nope. Other than he NEVER has slept through the night ( minus I think 3 or 4 nights in 4 years) he ended up in our bed but overall he was great.

Monday is our big therapy day. Of course I really thought at his 5:30 am wake up call we were in HUGE trouble. But I was pleasantly and thankfully surprised. Since I had a bad and frustrating weekend with communicating with other people ( not in my house) I was hoping for a Angel day.

I had been reading "The Sensational Child" book all weekend and had found a few "skills" and coping techniques for some on the sensory stuff we have noticed in Tyler. We talked all morning about Therapy, we hyped him up with picking his own clothes, picking a reward if he worked hard, playing incredibly hard with him BEFORE ( see he has some sensory SEEKING behaviors we were trying to fill) we left for therapy and we let him totally TRASH his play room ( and eat whatever he wanted) and then we left.

He fell asleep on the way but woke up happy. And he was ready to go. I let him make all his own choices about how we would get in the building instead of just doing it for him. And made him walk and push the stroller ( another sensory behavior modification for over sensitivity, YES he has both... he has more than 2 actually) and talked about how he was going to go to speech and he would like it and he would participate.

The transition..... ROCKED... that is right Very little crying. He even did as he was suppose to and participated ( more) than what he had before. He was bribed with jumping on their tramp and sliding down the slide and the reward he had decided on at home ( a Thomas sticker) was given. He then spent the next 3o minutes in the big play room there at Shriner's playing with another little boy and he was having a good time.

To help move on to the next activity ( which was lunch and another appointment) I had him push his stroller again and he did well with the transition. ( I am LOVING this new book)

The appointment we had next was the coveted sleep doc. ( if you want her name you will have to email.) She normally is very hard to get into and I was expecting a LONG wait to even see her but it took only a week! We got to fill out the really large packet of papers and while in the waiting room Ty played a number puzzle ( which he got right!) and got out a fire truck and pretend played with it. ( You have NO NO NO idea how big that it for Tyler, or a kid with "issues" and he did it on his own) And then he found a vacuum and did the same thing.

So the doc came in and got us herself. No nurse, just the doc. She was running around crazy in the back ground when we got there. I had no idea it was her. And she started asking questions. She is probably the first doctor I have ever heard say " You poor mom, are you tired? We need to get you a nights sleep." Yes she was concerned about me.

She decided that she didn't agree with his first diagnosis of benign sleep myclonus because the problems occur LATER in the evening. Like 3 am and on. She is pretty sure that he has a genetic condition known as Periodic limb movements or PLM and it is in the same family as restless legs.( did I mention genetic because I am SURE his dad has is it. My bed is even shaking from it RIGHT NOW) And because he has a neurological condition it would make PLM kind of exaggerated.

Because of his chronic lung disease and history of prematurity she wants to rule out Sleep Apnea by doing a sleep study but she is almost certain she is correct on the PLM diagnosis. So on Sunday, Tyler and I are sleeping over. That's right. She wants us in and done with his study before we do his Phenol shots with Dr. Gooch. ( In December )

For the first time in a LONG time I felt we had some kind of answer and someone who isn't and DIDN'T blow off his sleeping as " well sometimes kids don't sleep through the night" She specifically said, your child should be sleeping through the night by age 2. If not you should have them checked out. Plus our child is on a sedative. YES a sedative... and one that is NEVER used but in a hospital setting.. and he is on the HIGH dose. She wishes the doc she practices with for adults took our insurance and she would have done double sleep studies.

I HOPE HOPE HOPE that we have answers that will help our child.

Sleep=developmental strides.

We need those strides right now!


* post to look forward to- communication ( revisited) and what we are finding with his sensory issues....* WAHOO

PS. Dallas has Strep. How the heck does he get strep when he NEVER leaves our house? I mean NEVER leaves the house. I do the shopping, I do the outside of the house work, I do the therapy and doc visits and HE is the one sick... LIKE BAD sick.. like no complaint to go the docs sick, Like not well enough to shower, and in bed ALLLLLLLLLLLL day. He got sedatives tonight to... LOTS of them ;)

Sensory Processing

At one of our most recent OT visits it was mentioned that they would like to do some sensory testing on Tyler. I half laughed. We KNOW he has some sensory things going on. I never thought of it as much of a "disorder" but she recommended some books, played with Ty and then gave me a sensory profile to fill out.

I was going to go buy the book but thought I better be "frugal" and see if my local library had it. The one I really wanted to check out was gone so I picked up another one. From the first few pages I was hooked. I am obviously not far into the book but there are so many things that are right on.

My one ( or two ) concerns is that the disorders speaks mostly of neuro typical kids not being able to process things. But not kids with other issues. Why is this a concern? Well some of the things that make up the sensory part of Tyler are broken from his disability. But I guess that in turn makes it broken for the whole system. OR it just explains some of his behaviors instead of just saying he has CP or it is from the bleeds.

We know that his vision plays such a role into things but until my recent trip to his classroom did I "feel" that there was more to what is going on. It isn't a solution but maybe it will be a small step toward understanding and how to better Tyler's environment.

Some examples of Ty's behaviors :

When he gets angry he hits parts of his body into the floor or wall. It use to be his head. Now it is his feet. While that makes it sound like a tempter tantrum when you watch it, it goes far beyond just a typical tantrum.

When we are eating. The battle begins the SECOND Tyler says he is hungry. Giving him options works sometimes. It seems that it is a battle ALWAYS. And we are finding that a lot of it is sensory. ( spicy foods, textures, having to sit down)

Our house is quiet because Tyler can't tolerate noises. He doesn't have noisy toys, he doesn't try and play with Toys that make noise. When we go into places where there is a lot of noise by the end of the activity he has or will be on the verge of a meltdown. If we have him settled down enough to say eat with us or the people we are with, if something happens ( loud noise, screaming, etc) it turns into a meltdown.

I can't wait to go through even more of the book and find out what makes Tyler tick and more importantly what we can do to help him become better.

Chalk it up to yet another thing to add to his Uniqueness. :)