Skipping through the Puddles

A week has gone by

2012-01-11T12:17:00.000-06:00

Today marks one week since Jackson started school!
He has done by well! Jackson seems to think that he needs to bring his froggy (wubbanub) every morning. He holds onto it with a death grip while getting on the bus. I guess froggy protects him! Each time Jack gets home, he immediately points to his backpack and says, "froggy." I think it's funny how he clings to this frog. I love, even more, how he remembers that froggy is in his backpack!

Here's the kicker...
Jack went to P.E. on Friday and today he went to the Library and even brought a book home for the week!

OMG OMG OMG OMG OMG OMG OMG OMG OMG OMG

2012-01-05T12:52:00.000-06:00

OMG OMG OMG OMG OMG OMG OMG OMG OMG OMG OMG OMG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Jack had his second day of school today! The pick-up this morning went well. He was nervous on the lift. I would be too! While waiting for the bus, we talked about the swing and the stander. Jack started kicking his feet and yelling! He was excited!

Today, when Jack came home, there was a gold gift bag inside of the backpack labeled, "A Surprise for Mom and Dad!" Inside the bag was a CD-R labeled, "Jackson's 1st and 2nd day of school. Enjoy!" A sticky note attached said, "Becky, There's a surprise on here-watch immed!! Angie, PT."

Below you will see pictures from the 1st day of school. After that, two videos from the 2nd day of school. Be prepared to cry! I did!

First day of preschool!

2012-01-04T12:15:00.000-06:00

Wow! Jackson official started preschool today! He just turned 3 yesterday and he started preschool today!

In Illinois (I don't know what other states do), as soon as a child in EI (Early Intervention) turns 3 they begin preschool in the public school system. Instead of waiting until August or September, Jack gets to attend in January! He'll have 2 1/2 years or preschool experience. He'll receive therapy as well!

Jackson thought the candle was cool! He did NOT like when we blew it out.

He also got to ride a bus for the first time!

A child has to be able to walk up the steps of a school bus in order to ride without assistance. This simply means that Jackson gets to take his KidKart (wheelchair) on the bus!

Yes, I cried after the bus left. I cried a lot. Once under control,I quickly got in the van and went to Jack's school so I could turn in his paper work, bring a package of diapers, and most importantly, take pictures!


Waiting for the bus. Jack doesn't understand why he can't go back inside to play!

"Mom? What is this?!"

"Oh! It's moving! This isn't too bad."

"I'm not so sure about this!"

Jackson has a total of 5 children in his room. His teacher says he'll be the star. None of the kids in his classroom are mobile. None of the kids talk. The other kids don't have very good fine motor skills. Jackson is in this room to receive the maximum amount of physical therapy possible. The teacher, in-class nurse/teaching assistant, and teaching assistant (amazing woman in a wheelchair!) will all apply physical therapy throughout the day. His standing frame is in the classroom and Jack will be in it every day! He will have the opportunity to move up to different rooms as each semester comes. I told him he has to be walking by the time the baby comes! No pressure!

Here's the rest of the pictures

Evelyn drew a picture for Jackson! It's Spongebob, Patrick, and Krabby Patties!

Jack decided to try to drink water for his 3rd birthday! What a surprise!

He also tried a sippy cup! He said, "numnum!"

Jack did NOT taste his cake. Bummer.

Happy Birthday, big boy! The big '3' Oh!!!!!!!!!!!!!!

2012-01-03T20:11:00.002-06:00

Wow!
Jackson is 3! He's 3! I can't believe it! Around Christmas I was thinking about how I couldn't walk without having contractions; around New Years I was thinking about how I had my second overnight observation; On the 2nd I went in for the gestational diabetes test but the hospital didn't have my order so I went to the labor & delivery floor for yet another non-stress test and my contractions were showing and I was 1cm and like three different nurses checked the dilation; around 1:00am on the 3rd (34 weeks pregnant) I drove myself to the hospital, pretty sure I was in labor (contractions coming every 3-4 minutes), spent the next 4 hours sure I was in labor while the nurses didn't think so (as I was nearly jumping off the bed in severe pain!) until they discovered that I was 4 cm and tried to slow labor ( two nurses and the doctor stared at me in agony on the bed, not sure what to do) with magnesium sulfate (my doctor was on vacation) to transfer me to a different hospital (two doses, didn't work); I went in for an emergency c-section (my second, and this time the operating room wasn't fully prepared and it was being stocked as I was getting the spinal, while nearly jumping off the table having horrible contractions) and had our little Jackson at 6:46am! Happy Birthday!

The story evolves from there, like a jump rope twisted in a manner that you can't even find the end.

Pictures will follow. I want to wait until I get pictures of Jack starting his first day of preschool!

2011-12-23T15:30:00.000-06:00

Ok. So, yah! It's been a long time since I've written. Life has gotten the best of me.

This update will be in list form, mainly because there is just so much going on. I won't have any pictures posted with this blog because I am writing on the iPad.

I will have to go backwards with my list in hopes of not forgetting anything.

1. I think jack sat up from laying all by himself. I am about 85% sure. I am pretty sure I layed jack in his bed today. I checked on him a short while later and he was sitting up and scooting around in his bed. What a milestone!

2. December 15th was Jackson's last day at the Early Intervention school. He starts preschool Jan. 4, the day after he turns 3!

3. Jack stood up at the bar at school for 1 minute. It's a teeny tiny bar in front of a mirror. He looked down after a few seconds into it a discovered that he wasn't being supported. He then screamed with locked knees and a death grip on the bar!!!

4. Jack got his new big boy bed! Jason converted part of the bunk bed into a special needs bed. It's a full size bed with a complete headboard and footboard and railings all around. The exterior railing is on a hinge and folds completely down for easy access. Jackson loves it!

5. Jack saw Santa. He loved Santa so much that I had to peel him from santa's arms! He even got to wear santa's hat!

6. Evelyn is growing up! We now do a drop off at school each morning. No more getting everyone out of the van and walking everyone inside. Phew!

7. New words: "Dan" (dance), "Stan" (stand), "peu pure" (computer), "papa" (grandpa), "ga meh" (grandma), "be woo" (blue), "een" (green), "Ed" (red), "keh keh" (ketchup), "yesh" (yes). He has also been known for saying phrases. We usually only hear them once and that's it! "Idonewanna" (I don't want to), "goway" (go away), "ca me" (come here).

8. Jack is going to be a big brother!

Maybe it's a Good Idea

2011-11-15T19:33:00.001-06:00

After digging into a bowl of chili with his fingers (only licking the sauce), Jackson decided it would be fun to play in the bathroom! Please ignore our hideous pink and green bathroom!

Happy Halloween!

2011-11-01T10:11:00.000-05:00

happy Halloween!
I took the kids to the annual trick or treat at the mall. It's indoors, simple, and friendly! Jack was hilarious! He was laughing, squealing, and yelling at the diffent costumes! Evelyn was shy, as usual, but added to her candy stash we obtained at our church's Trunk or Treat.

What I wanted to share was the odd memories I have from past Halloweens.

2008- I was pregnant with Jackson. Evelyn just turned 2 in July. She dressed up as a butterfly. I recently found out that Jack might have some sort of syndrome. I was traveling to Springfield twice a month for level 2 ultrasounds. I was already having a lot of pain while walking. I remember walking in the mall, trick or treating, with Evelyn and Jason. My back was hurting and I was having a lot of pelvic pain and had to rest several times. I was only 25 weeks pregnant but looked about 30 weeks.
2009- jack had his helmet to shape his head. We put Halloween stickers on it. He was a ghost and Evelyn was Spiderman!
2010- we went trick or treating at the mall on the 30th after attending a party for a friend. Jack started vomiting at the mall. It didn't stop all night and Halloween morning we took him to the local ER. The hospital deemed Jack severely dehydrated and contacted St. Louis where the old GI doctor was. jack was transferred to St. Louis via ambulance and stayed in the hospital for 4 days. A diagnosis was never determined.
2011- wow! No health issues. We travelled to GI in Springfield for a follow-up and had a great appointment! Obviously, jack was Spongebob! Evelyn changed her costume...again. Last week at the BabyTALK event she was Rapunzel. Saturday at the Trunk or Treat she was a princess. Yesterday she was a different princess. Thank goodness the costumes were all part of her dress-up trunk.

Happy Jack

2011-10-27T19:06:00.001-05:00

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

Random Thoughts

2011-10-26T10:39:00.001-05:00

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!!!

2011-10-13T15:10:00.000-05:00

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

2011-10-13T09:39:00.000-05:00

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!

2011-10-12T09:43:00.000-05:00

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.

2011-10-06T15:53:00.000-05:00

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.

2011-10-04T22:27:00.000-05:00

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

2011-10-04T16:32:00.000-05:00

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.

The casting call

2011-09-30T15:30:00.000-05:00

It's funny how I have days where there is nothing to share and then I just go blog-crazy.
Today, Evelyn and I took Jackson to POS (Prosthetic & Orthotic Specialists). I must be a true blonde. I didn't realize why people giggled at the name of the company until I was clearly explained what POS usually stands for. teehee! Any who...POS is where Jackson got his helmet and his first set of AFOs. To remind you, AFO stands for Ankle Foot Orthotics. I took some pictures to share the delight that Jack felt while getting casted. The person who takes care of us, since the beginning, is Andy. And...he grew up in the same town as me! Right, back to the casting pics.

The first picture shows Andy casting Jackson's right foot. You can see a sock on Jackson's left foot, which is great! I wouldn't want the cast to stick to Jackson's skin. The blue writing on the sock is marking where bones are. The blue marker transfers over to the inside of the cast.

The next picture show's what Jack was doing while the casting was taking place.

Jackson's first AFOs had a Spiderman design on them. We picked Spiderman because Spongebob was unavailable and Evelyn loved the Spidey. This time, Andy gave us the link to a website so we could pic out the design. Jackson, Evelyn, and I did our search and came up with 9 designs that we liked (out of 45 designs). I put the 9 designs on the iPad for Jack and let him pic. I kept signing "Twinkle Twinkle" and "good." The "good" was two different choices and the "Twinkle Twinkle" was for the night sky design with stars. Each time I showed Jack the night sky image he smiled and signed/said "Twinkle Twinkle."
Here's his choice. Jack's AFO choice. Spongebob wasn't available.

The next two pictures are what I found at Walmart this morning. Wow! Jack can spot Spongebob from a mile away. I thought the chair was cute and then we found the Pillow Pet! I didn't buy either item, but they are going on the wish list.

ick

2011-09-29T18:25:00.000-05:00

First, I must apologize for not updating everyone post-eye follow-up. Woops. Time just keeps getting away from me. My mother drove down to Decatur and took the trip with to St. Louis Children's Hospital. Have I told you how awesome she is?! I never ask her to come. I don't want her to feel obligated. She continues to help. I love her.
So, our worries were confirmed, but they weren't as bad as we thought. Jackson did rub out the sutures, but they weren't the sutures holding the eye muscle to the eyeball. This may be a bit graphic...The doctor took a speculum to keep the eye lids open so we could look in Jack's eye. ~~~ick~~~ I get grossed out just thinking about it. Jack was so angry, he kept popping out the speculum. It was really gross looking. My gosh, the human eyeball is HUGE! There is a layer over the eyeball that has to be cut open and pulled back so the eye muscle can be accessed. The sutures keeping the outer layer of the eye closed up came out. Of course, this could be partially incorrect. I started to do some research on the eye but it's REALLY gross.The doctor did not put the sutures back in. He chose to let the eye heal all by itself.

What else...Jack saw the Orthopedic Doctor today. All is good. We got a new script for AFOs. We take Jack in Friday to get casted. I hope to take pics! It's pretty silly! He'll be getting new AFOs. I wonder what design we'll go for?

Surgery #9

2011-09-20T22:53:00.000-05:00

Well, Jackson had surgery #9 on Thursday, September 15th. This was the eye muscle surgery. If you want to learn about the procedure, feel free to search on the web. Some images can be icky.

Did you know that Jackson's pyeloplasty (kidney surgery), UPJ obstruction (ureter surgery), and muscle biopsy (to test for the COQ10 deficiency) was on September 15 2009? Wow.

Anywho, the surgery went fine! Jason was there and Jack did great! Well, he about attacked me when coming out of anesthesia, but I would be angry too if my eyes were sore and I had tubes all over me. Jack had an IV in his hand that was locked and a running IV in his foot. We requested an IV in Jack's foot so he could have his hands free for signing and sleeping comfort. He tried to pull out the IV in his hand. It was removed fairly quick after that. Jack couldn't hold his head up for about an hour. He was also in pain. We ended up giving him morphine, in very small increments, through the IV, to ease the pain. It took a lot! Not really, but he was giving morphine 4 different times. It only totaled 1mg in the end.

The three of us stayed overnight while getting Jack adjusted to his feeds. Seriously, I planned on staying several days. I, as well as Jason, family, doctors and nurses, was expecting another post-operative ileus. I had a suitcase packed with clothes for 4 more days waiting in the van, 6 days of clothes total. The room was set up with suction. We were all ready to pump Jack's stomach. The IV was still running at a good rate while getting the formula started, very slow. Directly after the first official feed-a half ounce of pedialyte-we took Jack for a walk in a wagon. Jack leaned back on a pillow, surrounded by thick blankets to keep him from falling over. We took him around the floor; Jason pulled the wagon and I pushed the IV pole. Jack enjoyed it and quickly passed back out when we returned to the room. Actually, he slept most of the day and was very happy to be in a room. The first thing he wanted to do was go to sleep. He specifically asked for it.

The formula was started at 15cc/hr and was run for 2 hours. 15cc is the same as 15ml, which is 1/2 an ounce. 30cc is one ounce. He was bumped to 25cc/hr for 2 hours, then 35. 45. 55. 60. He made it! 60cc/hr! He tolerated his night feed. In the morning we were able to start his normal rate and dose. This is 265ml/hr until 160ml is reached. It takes around 40-ish minutes. Yes, I know I just went back and forth between cc and ml. It seems to happen a lot. Anywho, we waited 2 hours after the morning feed. Nothing! I know!!! No vomit! We decided to come home. The funny part? Everyone was in shock! The opthamologist fellow asked if we wanted to try his second feed just-in-case? No. The nurse didn't want to take the IV out until we were walking out the door. She was afraid if she took it out before we were ready to go he might start vomiting. We left the hospital at 10:30am.

Today is Tuesday. I have been putting prescription ointment in Jackson's eyes twice a day since Friday night. We are heading back to St. Louis Children's Hospital in the morning. I got worried Monday evening because I saw a dent/hole/gash in Jackson's right eyeball. It is over on the outside of Jackson's eye where the sutures were. It looks like someone took a teeny tiny spoon and scooped out a part of the eye. What is worrying me more? Today, Jackson's right eye is looking at his nose. Over the weekend the eye was straight. Really, it was aligned well before the surgery and looked great after. Not anymore. I don't know what happened but I fear that the sutures came out.

I am packing a bag and leaving it in the van. My amazing mom drove down this evening and is taking the drive with me to Children's. She will be coming back to care for Evelyn if I have to stay with Jackson. My mom is so amazing. She already came down and cared for Evelyn when Jack had surgery. We need to build her a guest house. We should probably build enough room for my dad as well. Any takers? ;)

The pictures? Before surgery. The 'M' is on Jackson's forehead so the doctor knows that measurements were taken. I say it means "mighty." the hot air balloons were in the park outside the hospital. This was the view from our window. It was 6:30 in the morning, or so. The close-up is how bad Jackson's eyes got.

Phew!

2011-09-12T14:42:00.000-05:00

For those wondering what I do when I'm not running around with the kids, here's Jackson's medical binder. I had a stack of medical records dating back to January that needed to be filed. So, to keep organized for the upcoming surgery, I got to work. Phew! What a mess! Now, I need to find either a 10 inch binder or get another large one and split up the files by year.

Wow E Wow!

2011-09-11T17:52:00.002-05:00

Today, Jackson...
1.) ate banana cream pie pudding with a spoon and let me 'feed him'
2.) ate pasta, pasta sauce, corn, sour cream, and brownie mix with a spoon and with his fingers
3.) experimented with the Bionix bottle and a sippy filled with kool-aid

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The only downside is...Jackson's face is covered in a rash from the sour cream.

And it continues

2011-09-02T15:03:00.001-05:00

Testing out a banana! He calls it a "buh nuh". Didn't really eat it, but touching it and licking it is a HUGE step!

I'm a baaaaaaaad mama.

2011-09-01T12:57:00.000-05:00

So...today Jackson was supposed to have his pre-op appointment with his pediatrician. We have decided to go ahead with the eye muscle surgery. It is scheduled for 9/15/11. The appointment was scheduled for 11am. Jackson attends the BabyTALK STEPs program from 9am-12pm. I arrived to pick him up at 10:35am and he was sitting at the table getting ready to eat snack. We had about 10 minutes before we had to leave, so I figured he could stay for a short while longer. I ended up staying until 12pm, calling and rescheduling the appointment for another time.
Well...it started with Jack's Developmental Therapist giving me a bucket of torn up construction paper. Jack tore the paper up himself! This is a HUGE deal because I can't open the mail! Jack cries and then screams, holding his head. He acts as if the sound of ripping paper is painful (although yesterday I was able to open the mail and he didn't seem to care...at all!). The DT said she sat next to Jack ripping the blue construction paper. He got VERY angry, grabbing the paper and throwing it, while of course yelling. She would grab another piece of paper and begin again. He continued to grab the paper, and out of anger to a piece in half. The DT gave him another piece. He tore it again. And another. And another. And another. The DT said that he was ripping the paper while completely pissed off. But...Jack tore paper!
So, back to why I had to cancel the pre-op appointment. It was 10:35am and Jackson was getting his white t-shirt on for snack. He was given a small bowl of strawberry yogurt with a plastic baby spoon. At first he stuck is thumb in the bowl and then tasted the yogurt. This whole time I'm expecting the bowl to be dumped over, the spoon to be thrown, and the yogurt to get rubbed all over the table and in Jackson's hair. Nope. There's more! Jackson licked the handle of the spoon. The DT showed Jack how to lick from the bowl part of the spoon. She dipped the handle in the spoon. Jackson licked the handle again. Jack licked the bowl of the spoon. The spoon went in his mouth. He dipped the spoon on the yogurt. The spoon went in his mouth again. I am sitting on a plastic Educube with my hands over my mouth and tears in my eyes. He continued to lick yogurt from the spoon! He was given a slice of banana. He put the banana in the bowl. The DT cut up the banana and scooped a piece up with the yogurt. Jack licked the banana. By this time it's 10:40am and all I can think is, "Why would I take Jack away from this when he is doing so well?" I called and rescheduled the appointment. Jack was given some small, rectangular graham crackers, some mini Ritz crackers, and some Gerber puffs. Jack is licking each snack. He is dipping the graham crackers in the yogurt and licking the yogurt off. He is licking the salt off the Ritz crackers. Wow!
I watched Jack and the other kids get their hands painted for an art project. I watched Jack in the Gross Motor room. He was in the Standing Frame again. He asked to go in it, had a great time in it, and got mad when taken out. And...I messed up his routine. Supposedly, he always goes to the swing directly after the stander. Whoops! He calmed down as soon as I figured that out!

Well, that is all...although it isn't as simple as that. it's a BIG deal!

2011-08-20T21:55:00.000-05:00

So...there are two pictures here. These pictures were taken this evening at McDonalds. Jackson is sitting on the bench all by himself eating French fries. He was too big for the high chair and we left his wheelchair in the van. Jack has been sitting in high chairs at restaurants for about 3 weeks now! Jason decided to try the bench and Jack just loved it. He was able to reach his fries and even snagged a few from Evelyn's small fry bag. The pile of fries on the bench next to Jack? That's his "all done" pile. He usually makes a pile like this on the table to the right side but I guess he felt the need to place all of the soggy fries on the bench instead.

Here are some other really cool things that Jack has been doing:
Saying 'no' while pushing something away and now when he doesn't want something. He sat in his high chair in the kitchen for 1 1/2 hours eating barbecue chips. He 'ate' half of the bag. There was a very large pile of soggy chips! He tried to brush my teeth. He took Evelyn's hair bows and tried to put them in his hair! He has been saying 2 and 3 syllables although we don't know what he is saying. He is really really talking.

Oh...and Jack now has his own iPad, although I am using it right now. He has pictures and puzzles right now that he really enjoys!

the conference

2011-08-02T23:23:00.000-05:00

We attended the CFC International Medical Conference in Chicago from the 28th-30th. Wow! We arrived at The Westin O'Hare on the 27th and came home on the 31st. Jackson was in medical clinics and research trials all day on Thursday. He saw Cardiology, Genetics, and Dermatology in one clinic. The geneticist is on the CFC Medical Advisory Board. Jackson also saw a vision team and an orthopedic doctor. The research trials included blood work, a urine sample, a skin biopsy, and saliva from all family members. There were numerous research trials available for us to sign up for. I signed up for most trials. This of course means that Jack had a bag taped to his boy parts overnight, blood drawn, saliva collected, and his forearm numbed and a skin biopsy taken. It was all for research to learn about CFC/Noonan/Costello Syndrome. I don't have much information from the clinics right now. I am awaiting forms in the mail.

We met many CFC families. It was quite an experience. I could go into detail about how CFC Syndrome, Noonan Syndrome, and Costello Syndrome are related, but I will just direct you to CFC International or maybe you can do a search for RASopothy or the RAS/MAPK pathway.

Without writing an entire book about the conference, I will just say that I truly hope the next conference, in two years, is a distance that can be driven. Thank you to my mom, dad, aunt, and uncle for helping at the registration table!
This is most of the CFC kids/adults that made it to the conference.

This is Ashley(age 5), Graham(age 3 1/2), and Jack. The girl on the right is Maya(age 5)

Jack and Ellison(age 3 1/2)

Kinley, Jack, and Meg(13)

Ava

The woman in green holding the little girl, Hailey, is Brenda. She is the president of CFC International. Her son is Cliffy, to her right. He is 18. The girl on the left with the dark glasses and dark hair is Jessica. She is 26. She is holding Nola.

The girl with the poofy hair is Rachel. We had a talk on Friday. She asked me questions about Jack. I could tell she was having trouble finding her words. Her questions were as follows: "What is wrong with him? Does he has cerebral palsy? Is he ok? Does he talk? Can he talk? He is trying to talk! He is smart! He will talk!" The girl with the glasses, holding the little girl, is Jessica again! She is fully aware! She talked like a healthy 26 yr old. She is taking 18 different medications. She cannot work due to chronic pain. She has had heart surgery. She has gastric paresis.

changes

2011-07-19T13:11:00.000-05:00

Hi there. These bottles you are looking at are a new way we are trying to teach Jackson how to taste and maybe even swallow. The bottle is very special. It has a controlled flow ranging from 0-5, 5 being the rate of a normal stage 1 bottle nipple. There is a straw inside of the nipple which keeps the flow very slow. The plan is to give Jack the empty bottle so he can dip the nipple in different sauces and foods. We would like to be able to put sauces and dressings inside of the bottle to teach a suck pattern. It's all experimental but we have high hopes, as usual.

This here is a standing frame. This is the one that Jack will get. We had a meeting this morning at school to talk about ordering a stander and this was the one recommended. I know it looks scary. I assure you it isn't. Just today, Jack was in his stander at school and loved every minute!