starting to crawl

April 25th,2009
16 months old
He finally took a few crawling moves and fell flat on his tummy.
What an exciting milestone to finally reach. One week later and he is cralwing about 4 feet now. He is also going from his tummy to a sitting position. I always have my back to him when he does this but I finally go to witness it and within a week he can get into the sitting position with no problem.
Shawn was sitting in his crib playing while I was putting up a closet organizer in his closet and turned around and he was standing !!! That was on April 13.
He has only pulled himself up to a stand just a couple time using the couch but he can do it everytime from his crib. It is great to see him getting stronger and those muscles building.
He can comb his hair. Well he tries anyways.
He has 4 teeth on top and 4 on bottom and he is getting molar coming in.They haven't popped through the gums yet.
Haha I am laughing at my son. I got him an Einstein video today and he is so engrossed in it and laughing.
He is also learning what the buttons on his toys do. Push the button and it plays music. Put the ball in the top and it comes out the bottom but you have to open the door to get the ball out.
He still only says DaDa but only a few times a week and MaMa once in a great while.

He had a speech evaluation done this past week and in the 2 areas they tested him in,
Auditory Comprehension-10 mo old
Expression-8 mo old

He will start speech therapy but since he goes to physical therapy once a week and occupational therapy once a week, adding speech once a week also is going to be to much for my busy scedual so I am going to alternate OT and speech every week.

Getting Stronger

March 12th, 2009

Shawn is now just about 15 months old.

He is now off the bottle and formula. It wasn't to hard to wean him from the bottle since his has been using a sippy cup. He learned today to use a straw.

His therapist doesn't want him using a sippy cup cause it will delay his speach and a straw will help build mouth muscles so something like that.

This past week he has been trying to get from the sitting position to pulling himself up on his knees. He has been successful once. I don't have to help him a whole lot.He was on his tummy last week and got his legs under him into the crawl position. He won't do that anymore. He hasn't liked being on his hands and knees for while now.

He just loves his grandpa, can't you tell?

He likes to sit on his lap when he gets home from work and grabs the top of his hair and pulls his head down and kisses the top of his head. Well, more like slobber on it. haha

He takes a bath every other day with him in our huge tub. He loves the water.

What is Myotonic Muscular Dystrophy?

It has been a long hard journey. For many years I dragged my daughter from one doctor to another looking for answers to what might be wrong with her. Her brain wasn't working right. She was slow,weak,developmentally behind.
It was my son that finally gave us the answers we were looking for. My son, now 18, was taken to a sports physical doctor. His hand are deformed and when he would make a fist, it would take him about 20 secs to open his hand up. He was referred to a neurologist where the diagnosis for MMD was made.
I was in total shock. I can home and asked my daughter to make a tight fist and open her hand up quickly and her hand was also slow to open. My search for answer were over.
I have two kids with Myotonic Muscular Dystrophy.
If that wasn't bad enough, my daughter was 5 months pregnant when we found out.

Both my kids have weak throat muscles that makes it difficult to swallow. They are at risk for inhaling food into their lungs which can cause pnemonia. Feeding bag into their stomach is the only option. I pray it doesn't get to that.
Their brain is greatly affected. Learning difficulties, making everydays decisions, very unmotivated, no socializing skills so they are loners,
Fatigue is a big issue that they battle everyday. They can take a 3 hour nap everyday easy.
Waking up in the morning is hard.
low blood pressure which causes dizziness and lightheadedness
Of couse weak legs and arms
my son had speech difficulties due to weak facial muscles
My daughter is going to be needing a wheelchair in the near future. It is hard for her to walk for very long before her heartrate goes sky high and needs to rest.

They will never be able to live on their own which is fine with me. I love having them at home.

first words

January 30, 2009...13 months old
He got tubes put in his ears this morning and also got a piece
of skin clipped on his upper lip. Everything went great. He is recovering
from the flu and he has been very tired. He can only stay awake for 1.5 hrs
at a time.
Feb 2nd
He said his first word...DaDa of course
bet you could of guess that one. He has been jabber all night his new word.
The next night he was saying mama and papa.
those tubes in his ears made a huge difference, he can hear way better

one year later

1/15/09
Shawn is one year and 3 weeks old.
He can't crawl or walk yet but rolls everywhere. He loves to roll to the wood floor in the entry way cause he discovered how to push himself backward and he thinks he is "hot stuff"

Milestones:
He finally learned to hold his own bottle....well sometimes he will.
Just starting to learn how to get out of a sitting position without falling over.
Can stand up to a couch and his legs are getting pretty strong. Can't really let go of him yet.
He sits on me and can pull himself up to stand with the help of the couch. He likes to play a game of it. He will pull himself up to a stand and let himself fall back to sit on my lap and put his head back wanting me to put him upside down.
He knows where my nose is.
starting to wave once in awhile
Can't talk yet but love to say "Mmmm" with ever bit of food.
speaking of food....vanilla yogurt is his favorite. His grandpa has yogurt about every night after dinner and Shawn go crazy.
He can feed himself a cookie but won't pick up cereal off his tray and put it in his mouth.

He sees a physical therapist once a week and starting next week he will see an occupational therapist. He had his first speach therapy today and they want to see him 3x a week and I think I might hold off. It is to exhausting to take him to some kind of therapy everyday.
He can only stay awake for 2 hours at a time and is starting to stay awake for 3. So trying to make sure he is awake for therapy can be challanging.

Foods he is eating:
spagetti O's ravioli eggs pancakes french toast pears bread mac n cheese yogurt
green beans
He just started taking off with people food about 3 weeks ago.

December 24th 2007

I took my daughter to the emergency room thinking she had the flu.
I was is total shock when they told me she was in labor...4 week early.
Her contractions were one on top of the other and she was vomiting. I never guessed she was in labor. The baby was under stress and to take baby shawn by emergancy c-section.
Behind not only closed doors but locked!!!
Me and my husband waited. It seemed like forever when they wheeled baby shawn out to icu.
They said he had a very weak heartbeat and did chest compression on him for 20 mins.
We finally got to see him and OMG wires everywhere. He was on a venilator andfeeding him through his umbilical cord. He couldn't touch him cause it made his blood pressure rise.
Oh yeah...5lbs 8oz. 19 in long

4 weeks later we brought him home with oxygen. He was on oxygen till he was 2 months old.
That wasn't fun. It took me awhile to get use to the oxygen tank. I was afraid to touch it, fearing I would accidentally shut it off. It was a very nervous time weaning him from oxygen. When it was time to return the tank and monitor to the store, Yikes !!!! I was panicy. I didn't want to get rid of it.