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.

3 yrs and 9 months

Guess it is time for an update on shawn. I was going to wait till his 4th bday but decided not to. He is 39 lbs and 42" tall. Yes, on really tall boy, as tall as a 5 yr old. One of his biggest hurdles, that is no long a major issue much anymore, is his younger cousin Sydney. He really had a hard time around her. Well, not really her but her cries. With his sensory issues, cries from kids bothered his ears. Everytime we went to visit sydney, he would start crying as soon as we pulled up in front of her house. Now he just walks right in and either wants tv on or heads straight to her room to take off all the books on her book shelf. All 40 books!!! haha

I bet you can guess what his favoite toy is? BOOKS !!!! He love to point at pictures in his books then wait till we tell him what it is. When he goes to therapy, the first thing he does is grab a magazine then when his therapist comes to get him, he will push her away cause he isn't done with his magazine yet. haha..it is really cute. I try to get there a little early so he can read his magazine.

Tidbits about shawn: This is his 2nd year of preschool. His first year only lasted 6 weeks then it was summer vacation. Last year he went to preschool 2 days a week and this year he goes 5 days a weeks from 8:30-11:45am. What a nice little break for me :) His teacher said he is really showing lots of improvements this year. He is just starting to match cards and finally learned his face parts. When I pick him up, they are alway sitting on the floor while his teacher reads a giant book and plays a singing cd with it. Shawn sits right up front by the teacher and flaps his arms and squeels. He loves book time.

Potty trained? Nope not yet.. constipations is getting worse and the Miralax isn't working as well as it use to. Yes i give him higher doses but with higher doses, you need a higher fluid intake or it just doesn't work. Right now we are experimenting with 100% Aloe Vera, more fiber and pureed prunes in yogert is his favorite. I also discovered cleansing enemas that are safe to use daily



He is really taking off with his sign language. He know about 20ish signs. He learns them very quickly but will only do them occationally.
mama,grandpa,grandma,bath,hat,shoes,eat,milk,thirsy,banana,hot,cat,dog,outside,sleep,brush teeth,candy,icecream,go bye bye,

Muscular dystrophy Lockup

Summer of 2011
Shawn is bailing out his therapists at the MD lockup. This was our first year that we went and met a few kids with MD.

Shawn meet his first MD friend at the Muscular Dystrophy Lockup at the Montana Steakhouse and guess what his first reaction was to him? Hugs Hugs and more Hugs.