Toncils out

March 28, 2012
Shawn arrived at the hospital at 6:45am. He chilled in the waiting room,toy area just as happy as can be. The nurse came and took us to his room where he wasn't to crazy about putting on his gown. why? because he is so use to long sleeves all winter and putting on short sleeves is a challege.
Next came the iv. She tried one of the veins in the arm but they were just about nonexistant but tried anyways. Shawn did really well having a needle in his arm. just a few whimpers but she couldnt get the vein so she had to try too foot vein. Some more little whimpers and some tensing but other then that, he sat really still. the nurse was in total shock. They aren't use to kids just sitting there. It think he whimpered more when i put his short sleeve gown on..LOL

9am- off he went on the stretcher.
Pretty intense moment. 9:11 the surgery started and 30 mins later they were done.
toncils gone, adnoids gone, and tubes in his ears.
We were in his room waiting for him when i hear those familar whines. What a great site to see. As soon as he got the tylonol with codine, he instantly quit whimpering.


He had zero reactions to the anestisia. What a relief. They even had 2 anestisiologist just for extra precausions. I was a little leary of him having codine so I asked for half the amount and then more tylonal. His O2 stats tried to drop a little on and off but he did good with the codine.

I was all settle in and had my bags packed for an overnighter. Since the anestisia stays in the body for 24 hrs, we stayed overnight to make sure he didn't have any unexpected reactions. shawn also settled right in with no problem. I guess it was because his mom was in the hospital about 4 weeks earlier for a few days and then his great grandpa was in the hospital twice recently also so he was very familar with the hospital setting.
It was a long night. First off, they did have a bed for me but i didn't feel comfortable sleeping at the end of the room cause i was afraid he would get out of bed and i wouldnt hear him so i put the recliner right next to his bed. The recliner wouldn't stay reclined unless i put a litter pressure on it and as soon as i fell asleep, it would return to the normal position and wake me up.
Shawn woke up at midnight so that was my cue to hop in him bed and watch tv with him. At 3 am, time to try to get him back to sleep. He hogged the bed but it was better then the recliner.
We were up at 6am and went home at 8:30am.
Dinner time and i had to go get his medicane and i was just planning on having malt-o-meal for dinner but shawn had other plans, he whimpered and pointed out the window all the way to the pharmacy so i ended up getting him his favorite fish sandwich from mcdonalds and he ate just about the whole thing.


Shawn did very well for the 24 hours he was there. No crying or nothing. He would hold both cheeks and give a little whimper a few times. The ipad was a life saver.

4 years old

Shawn turned 4yrs old on Christmas Eve. He is 43 in tall and 42lbs He is still nonverbal but I have heard him say "josh" a couple times. that is his uncle josh. Then I hear him say "osh osh osh" also. I am very positive that he will learn to talk. He still naps from 1-3:15pm.I always wake him up or he will sleep till 4pm. he goes to bed about 8:45ish.

He has a very brilliant mind that has really took off these last few months of being in preschool. He goes to preschool mon-fri from 8:30am to 11:45am. The first thing he does when he gets to school is: First he has to find his cubby hole which has a fish on it.The fish moves everyday. then he takes his own hat and coat off. He can finally unzip his own coat too. Then he will go pick out a book and sit quietly at the table.

What he has learned in school:
He know all the upper case letters of the alphabet
He is trying to match the lower case numbers with the uppercase and his teacher told me today that he picks letters out of a hat and puts it in the correct alphabet order.
He can match
He know several colors,numbers and shapes
somewhere down the line, he has learned to push the wood train set on the tracks.I bought him one for christmas also.

He is coming along great socially. He still prefers to play alone but sometimes he will really surprise me and play with his cousin Sydney for quite a while.
He favorite things to do haven't changed much. He loves watching tv and looking at books. His music book and his recorded book of his mommys voice are his favorite.

I recently introduced him to his grandpa's ipad. Boy was that a mistake. LOL He is totally addicted to it. I had to buy a door knob cover for our bedroom door and keep it shut now cause he will go in there and get the ipad.

Even thou Shawn lives with me, he has a very special bond with his mommy. He loves to go to her house and lay in bed with her and play. He hates it when it is time to go home. He will grab his mom and hug her and point for me to leave. He doesn't want to go. I love that he has that special bond with mommy.

preschool

Shawn has only been in preschool just a couple months now and I am so impressed on how much he is developmentally growing.He loves the song books so I decided to buy him one.He sits on the couch listening to the songs and turning the pages and I was totally surprised that he stays on the right page with the song.

He got one of his books out last week, it is a book with several squares on each page with a different picture in each square. I would ask him "where is the baby washing his hair"? WHAT? he pointed at the right photo !!! Ok, I had to try it again and again "Where is the baby sleeping"? Where is the baby crawling"? He knew them all.



He also know how to match. What a little smarty pants he is getting to be.
Now it is time to start learning some letters... ABCD is where I will begin.

meeting his daddy

Noverber 3rd 2011 was a very important day for shawn that I wanted to blog so he never forgets this day. Thanks to Facebook, he meet his daddy for the first time.

We drove to Idaho Falls and met at the mall. Yes, we were all nervous but it went great.
Shawns reaction to his dad?
I made sure to let his dad know ahead of time that he doesn't really connect with other and that is just what happened. It was more of a "watch" then interact.

We watched Shawn play on some toys at the mall then he was ready to leave and took off walking so we followed him. While I was in the restroom changing his diaper, his dad found a super ball on the floor.That was a great way for shawn and his dad to have a little interaction time. They threw the superball back and forth.
Then it was time for him to take off walking again so me and shawn's mom stayed behind and let his dad have some time. Byrons wife also came along with Byron's sister and her boyfriend.
I really enjoyed meeting all of them.
We went to dinner at a mexican resturant next door and when it was time to say our goodbye, we tried to have shawn give his dad a hug but shawn had another mission to accomplish (poop time) so the hug we have to wait until mext time

Halloween

Happy Halloween-2011

The bum and the princess. As you can tell, neither one wanted their picture taken.

We went to our church halloween party and had a great time.
Oh great, how is he going to learn potty training now? He thinks
it is for throwing things in.

Terrible 2's at age 4

Shawn is just about 4...3 yrs 10 mos to be exact.
He is finally hitting the terrible 2's and I have to say that I am excited. Not at the fact that I am dealing with his picky eating or not going to bed at night without me making several trips to his room but the fact that he is developing and growing. It is exciting to see him change.

wow it this a hard stage. He use to love to eat and eat everything and anything. Dinner is my biggest challege. He usually ends up eating a bowl of cereal,chips or if he cries hard enough then I will give in and take him to McDonalds for his favorite fish sandwich.

Going to bed? Well, it usually takes about 7 trips to his room. He will get out of bed and stand by the baby gate in front of his door and make his grunting noises. I will go up there to put him back to bed and he will have his pillow (which he hates on his bed) on his bed wanting me to lay down with him. Once in a while I will give in and lay with him. I don't want to turn that into a bad habit so I really had to show control tonight.

I hope this stage passes quickly. What is the next stage?

For Shawn's Dad

Thanks to facebook, Shawn is about to reconnect with his biological dad and his wife.
We are all so excited for them to meet.
His dad is wanting to know about his disease so I am dedicating this posting to him.
Shawn has congential myotonic muscular dystrophy. Congenital meaning that his symptoms showed up at birth otherwise your symptoms can show up at pretty much any age and you don't even know you have this disease.

Dispite being born 4 weeks early, he just a have a few minor issuse that left him in ICU for 4 weeks before coming home.
So far he is pretty healthy.

He does suffer from chronic constipation which i have to make sure he takes Miralax everyday and I am also experimenting with prunes, aloe vera, daily enema cleansers ect.. but nothing seems to help much. He does have his good days and has bowel movement and someday we will struggle for a few days till I have to intervein with an enema.
He isn't potty trained yet. Don't know if he ever will be. It is just one of those things that we just have to wait and see.

He does have some weakness in his throat muscle so I have to be careful that he takes small bites of food. He asperates on liquids and will cough and cough cause the liquid goes into his lungs. This makes him high risk for asperation pnemonia which he did have just this past summer. We caught it really early so that was lucky,

His overall muscles are weak. He can't run or jump. He goes to phyical theraphy once a week
He is also developmentally behind and goes to occupational therapy once a week. He cant talk but knows about 20 sign language. His can understand everything I tell him and is smart is certain areas.
They say he has aspergers like you and andrea but the muscular dystrophy has the same symptoms as aspergers so that is really up in the air.

He doesn't know how to play but he loves his books. He isn't much for interacting with others but he is getting better at that. I would say about 30% of the day, he will want to interact us. I really have to push him to do things other then watch tv all. He loves going to preschool.

What does the future hold for him with MD?
He will comtinue to get stronger until his early teens then the symptoms of MD will start showing up and progressing.

The heart and lungs are the 2 biggest issues. With the heart, MD will attack the electrical system of the heart. When/ if the time comes, he could possibly need a pacemaker or difubulator. He does have his heart monitored once a year and so far everything is great.
With the lungs, the muscles will get weakened and when/if that happens then he will go on oxygen.

Pain will definately be an issue. I think this is the worst of the symptoms along with chronic fatique. He does get tired easy but loves to get up bright and early in the morning..6am.

He has sensory issues that are getting better. When noises bother him or if he gets over welmed, he will plug his ears and cry.

His lower leg muscles are twisting so in the future with this starts to interfer with his walking then he will have surgery. The will fracture the bone and put pins in then put him in walking casts so he will still be able to walk

His muscles will gradually get weaker and he also has some trouble with his hands locking up when he grips things like door knobs. It takes his hands a little longer to relax and open back up
Life expectancy? I hate thinking about this and just take one day at a time. this is really up in the air also...as it is different for everyone. 20's, 30's, 40's?
He is one happy toddler and is very good natured.