Happy Jack

We took the family to a Halloween event sponsored by BabyTALK,  the group that heads Jack's school.

Random Thoughts

The pictures I am sharing with you have been uploaded from my phone, which is also how I am writing this post. If my explanations so not match the photo, well, Haha!

First, Jackson is doing great! He is enjoying his stander and likes his new AFOs. He has been rolling around on the floor like a maniac and is bottom scooting a lot! He has even gotten himself into trouble! "My little boy is getting into trouble!"

He HATES the sound of the Magic Bullet-type device!  I can't even touch it or he gets VERY upset. However, he has tasted each Blenderized food I have offered him.  I have been blending food in a different room.

Jack is talking a ton! I don't have a clue what he is saying but it sure is cute!

More:
-Jack can sign the letter 'B'
-Jack said 'ooo-gee' (froggy)
-Jack has been trying to sit up from laying down by pulling on his toy boxes.
-I have 8 inches of leaves piled up at my back door.
-I don't quite know how I am supposed to get a picture of Jack sitting in a pile of leaves.
-At school, Jack sat in the grass and played with a leaf!
-Evelyn received a good 1st quarter report card.
-Jason is doing a great job following his new diet for Type 2 diabetes.

Ok, the pictures:
( I have no clue if they are in order )
1. Yummy yummy cauliflower casserole.
2. Jack at school sitting in an educube
3. Jack during circle time
4. Jack and his buddy Adam ( Adam has Down Syndrome)
5. Sebastian is a silly dog.
6. Jack found a new hat!
7. Brother and sister. Jack is wearing his new-to-us Hatchbacks. They are special shoes just for AFOs. A CFC mommy mailed us the shoes to try out before we buy some. They are expensive.

Standing Tall!!!

Yah. I know. Sorry. Well, not really! There's just so much going on! I can't help but keep everyone updated.

Jackson has been sick and missed school Tuesday and also today. We were supposed to go to St. Louis Children's for the Urology clinic but I rescheduled because I didn't want to bring him into the hospital with a GI virus. I wasn't going to take him to school with the virus. We would just stay home. Well, about an hour after I rescheduled the appointment, I received a phone call from National Seating and Mobility. Jack's stander was in! Todd, the guy who takes care of us, wanted to bring it by this morning. I informed him about Jackson's virus. He was ok with it.
Here are the pics! I took some pictures of the seating material, the frame, footrest, and tray, and of course of Jack using it!

 

 

 

Yah. It's big.

This is what the frame looks like with the support down. Jackson has to be laying down when I strap him in. Once secured, I push a foot pedal and the support moves into position. I can place Jackson in any angle, but I'm assuming that he will always be upright.

The material is vinyl or leather. I can't tell! I admit it.

The foot plates have a sandpaper-like material to keep feet from slipping.

The tray has an overlay to cover the hole where a bowl goes.

 

 

 

The frame is red. I like the sparkles!

Getting everything adjusted.

That hole in the tray is where the bowl will go. It's in the mail.

all settled in.

Note the pictures where Jackson is crying-screaming-squealing, he was mad because Todd was bothering him!

He doesn't stick out as much

So awesome!

Check out that stroller! Yah! It's sweet! Jackson received this stroller for his 3rd birthday. Yah, he doesn't turn 3 until January 3rd but why not start celebrating now?!
Grandma Star and Grandpa Dave bought this for him! We were looking for a lightweight stroller that would last a long time (hold a good amount of weight), for when Jack starts preschool. He will be taking his KidKart to and from school. A handicap bus will pick him up and drop him off. He will be in his KidKart during the school day. I don't want to be putting the chair in and out of the van, over and over and over and over and over and over each day. It's heavy! So, we were looking for a lightweight stroller, something that didn't weigh a lot and had plenty of room to grow. Well, we found one! It can hold up to 55lbs. It only weighs 16.5lbs! It folds in half very easy!
And the best part: I don't feel like a mom pushing her son in a wheelchair.
Is that selfish? It is nice to not stand out for a change!
Thanks mom and dad! We LOVE it!

Blender Baby!

So, for about 4 months, Jason and I have been going back and forth about the Magic Bullet and Baby Bullet. We have been pricing it, researching it, and just trying to decide if we should make the investment. It's about $60. I'd hate to make that purchase and then just watch the box sit in my cupboard. The reason for a Magic Bullet? To blend our food so Jackson can eat it. We are trying to get him to eat creamy foods to learn how to swallow. Go figure, my mom has a Magic Bullet-like device just sitting in the closet. It is brand new. Never used.

We brought it home and I tried it out. Last night we ate pot roast. What better than a savory meal for the first blenderized experience.

Yah, it really did look that nasty!

I made sure to add ketchup!

 Jackson did ok. He tasted it. I sort-of forced some in his mouth a couple of times. He pushed it out! "Yuck!" He may have changed his mind though. He licked the spoon, stuck his finger in it, and licked off his finger. Of course, the ketchup mixed with the pot roast. That's how we eat it! Why not Jack!

Evelyn says, "hi!"

Do you remember my past posts about a little boy named Colton? He also has CFC Syndrome. Colton recently had to get a Tracheostomy because of troublesome breathing problems, as well as numerous seizures that may have been linked to lack of oxygen to the brain. Colton is now on life support.He is finally thriving. It is sad that he must go through this to thrive, but a blessing that he is finally gaining weight. He has a new baby brother, born just a short while ago. His parents are now working on getting a specialized nurse to care for Colton so they can bring him home. Pray for Colton and his family.

Thank you, thank you, thank you, to a wonderful woman. Sadly, her husband recently passed away. He had cancer. He shared the same birthday as Jackson. There are also many other connections to our family with other birthdays.She asked for Memorials to Cancer Care Specialists of Central Illinois or CFC International. She is near and dear to our heart. Because of this, we now have $300 to donate to CFC International. Thank you, from the bottom of our heart.

Thank you, Angel.

Someone is very special for thinking of Jackson. He got a package in the mail today. I don't know who the gift is from. . .but Jackson says, "Thank you." He loves it!

We trained him...like a dog.

Ok. So I know I just wrote a blog today but I have GOOD, no GREAT reason to post again.

Jack likes to watch "The Wheel of Fortune." He says "wee" and claps with the audience!

There's more. This is the real reason why I'm posting again!

We 'trained' Jackson how to bottom scoot on his own! It's official. It just started tonight, but I am hoping that he'll remember how again in the morning. He's been trying, for a long time, to move himself forward. He rocks, wiggles, moves in circles, and tonight, scoots! We used his favorite toys and food. Yes, food. Like when training a dog.
Here's the video!
Jack was so excited when he was done He giggled and said "weee!"

It's Been a Long Day

Hi.
I'm writing again. I know. I just wrote a few days ago. Well, Jack had another appointment.
Jack and I traveled to St. Louis Children's Hospital on Monday. We were there a LONG time. The appointment was for the Endocrinologist, but Jack needed x-rays before and labs after the appointment.

The Endocrinologist is the doctor who prescribed the Growth Hormone for Jackson. The Growth Hormone is the shot we have been giving Jackson 6 nights a week for the last 10 months. "Ouch!"

Jackson had a lumbar x-ray and a bone age test on his hand. The Endocrinologist wanted to see if Jack's past reports that stated his bones were thin was correct. Well...they are. I don't really understand this at all, but Jack is 2 years 9 months. His bone age is 1 year 6 months. So...this means? I don't know. The doctor told me that Jack has osteopenia. He is deficient in Vitamin D and Calcium. Duh! We knew this which is why we are supplementing. His bones are at a higher risk for breaking. The way to improve his bones? Weight Bearing! And...we are already working on that! If he stands more and eventually walks, his bones will be better. From the research that I've been trying to do, which has been very unsuccessful so far, and that makes me very frustrated...I've got nothing.

It makes sense to me that Jack's bone age is 1 year 6 months. He's so tiny. There are kids more than a year younger than him and they are the same size as Jack. I think it might just be part of his syndrome.

The labs drawn were to check for anything that might have been missed. They are double checking the IGF-1 (insulin-based growth factor-1). In the past, this number has been nonexistent. The Endo doctor is also checking Calcium, Vitamin D, Magnesium, Phosphorous, and Potassium. wants to make sure his size doesn't have to do with his thyroid.