crunch crunch

It's been a while since I've written. again. Life has been up and down. Jack is still vomiting and sometimes spitting up. I'm not sure what's going on with him. The projectile vomits are what concern us. We can handle the reflux. I don't think the Pepcid helps, but the GI doctor said that it would help Jack's esophagus. We continue to administer it.

Jack had a good day at school Tuesday. Thursday wasn't much fun. The teachers said that he was very sensitive most of the time. He didn't want to transition  and was very scared of cotton balls. Poor guy.

Friday was horrible for me. The stress finally got to me. Thank you wonderful hubby for the extra help. Thank you wonderful family for the emotional support. Thank you xanax. Sometimes I feel so alone in my world of stay-at-home mommy and CFC mommy.

Jason recorded a Flip video for us to share from an AMAZING happening Saturday evening. However, after two negative reactions, we will not be sharing. Let me elaborate. Evelyn and I were snacking on Cheese Puffs.

Jack decided that he wanted one by pointing to the bag and saying, 'uh'.  Of course, I gave him one puff. He got the cheesy powder all over his fingers and stuck his fingers in his mouth. This led to Jack asking for a second puff. Now, both hands full, Jack licked the puffs. This led to placing the puffs in his mouth and crunching. WOW!!!!!!!!!!!!!!!!!!!!!! This went on for more than 20 minutes. We were so proud! So excited. Here's the bummer. Jack's face, around his mouth broke out in a blotchy rash. The rash stayed for 10 minutes. He also had MASSIVE gas and was VERY fussy later that night.
We offered Jack some Fritos tonight. He took right to them. He started with rubbing the salt off the chip sticking his fingers in his mouth. Next came the licking of the chip and then placing the chip in his mouth and even a crunch! We gave Jack a couple more cheese puffs. He stuck those in his mouth again.
Jack's face broke out in a blotchy rash, again.
The cheese puffs had whey. The fritos did not. The formula, the one that GI wanted to switch Jack to, was 100% whey.
 Am I crazy? Here comes some research and contact with the nutritionist.

food chaining

Food Chaining attempt number 3: I placed some sugar crystals and some salt crystals on the kitchen table this evening (still don't have Pixie Sticks). Jack wasn't interested in touching them so I decided to wet my finger, sing a song Yum Yum Yum Yum (to the melody of Are You Sleeping) and place several crystals on Jack's bottom lip. He smiled at the song and didn't fight me too hard for placement of the crystals. He sucked his bottom lip in seemed to taste the crystals. We did this several times and Jack signed 'more' each time I asked him if he wanted more. We were able to get 4 tastes with very minimal fussing!

giggle giggle push

This post may take a while to get through. Of course, this is only if you choose to do so. Many wonderful things have happened lately, and I want to share so much!

Below is a video of Jackson on his ride-on toy! Last night (Tuesday) he learned how to move on it! He was giggling hysterically the first time. Shortly after, he already has it down!

 

Of course, Jackson moves backwards, but how many kids learn to move forwards first?!

On Monday afternoon, Jackson met his new feeding therapist (#3). We had a wonderful consult! Miss Cheri wore a stethoscope around her neck the entire time. This was to show Jackson that, even though she was wearing one, she was friendly. We talked about Jack's eating history, likes and dislikes, his sensory processing disorder (SPD), and what has been tried in the past. To make a LONG story short, Jack will start with feeding therapy, every two weeks, on Monday, January 24th. I am to bring pixie sticks or fun dip sticks to the first session. We will start with 2-3 sugar granules on Jack's lips. A song will accompany so he understands that it is coming. We don't want any surprises around his mouth. Jackson has a guard that he won't let down with ease. This feeding therapist is the one I mentioned, way back when, who has SPD as well. Below is a link to her blog, with a very well-written description of a day in the life of SPD.

I also have a link from her blog describing feeding therapy processes.

Cheri has written books about her Food Chaining process with Jack's nutritionist.

I have a very positive outlook!

Laura's peanut butter and jelly sandwich

Effective Treatment for Feeding

"Oh, boy!"

Wow. What a weekend. Prayers to my hubby's grandfather. He has been in and out of the hospital over the past couple of months for congestive heart failure. He has been sent home for hospice care.
JACKSON, Jackson, jackson. . .
what a ham! We made it to church on Sunday!!!!!!!!!!!!!!!!!!!!
This is a HUGE accomplishment. It seems near impossible to attend a worship service lately. And, get this. . .Jack made it through the entire service. He was babbling and laughing, and reading his books, and cuddling, and fighting for his daddy's lap. At the end he even asked to go bye bye, by signing of course. Oh, and right when we sat down, Jack said, "Oh, boy!" as clear as day. It also sounds like he's been saying "home" (ome).
Speaking of signing, Jack has learned to sign 'yes' as well! He doesn't nod his head up and down, but he does sign 'yes' with his hand. That works for me!

The second attempt at the new formula was a no go. We made it from 1/2/11-1/9/11. The ratio was upped every other day. By the time the 9th came, Jack refluxed or projectile vomited 3 times. So. . .back to the old formula. . .again.

This afternoon, Jack visits a new feeding therapist. Her name is Cheri Fraker. She is the head of the feeding department at Koke Mill Medical Center, in Springfield, IL. She's published some books with her partner and Jack's nutritionist. http://cheriandlaura.blogspot.com/
That's the link to her blog. You can find a lot of information there.
I'll be bringing the medical binder, a couple of pens, and paper for notes. I'm looking forward to starting this process. This little man of mine will feed everyone else, but he won't feed himself.
This will soon change. I'm sure of it.

photos from December 2010

'sniff'

Jack went back to school today. Besides the screaming that started when I parked the van in the lot, Jack had a day that was expected. He did miss just about every class in December due to doctor's appointments, hospitalizations, and winter break.

Evelyn and I went to Jack's class early, like we do every Tuesday and Thursday, and Jack was sitting in a stroller, being pushed by his friends. He was having fun! His Developmental Therapist put him in a hanging door swing and Jack was having fun there too! Then. . .when he saw me. . .wow. . .he was EXCITED! Ends up that Jack cried the entire time, with a few breaks. If you know Jack, you know about those breaks. Distractions followed by a pouty face and more crying. "Figures!"

This evening, Jack and I took Evelyn to Gymnastics. I sat Jack in his KidKart. It makes trips like that so much easier. Jack was having fun in his chair. He played with his rattles, tossing them on the ground every so often. Here comes the reason why I'm writing tonight.
There was a little boy, probably around 2 yrs old. He was walking around the waiting area, every so often playing with some toys. Towards the end of Evelyn's class, a 1 yr old joined the 2 yr old at the Mega Blocks. They were building and knocking down the blocks, while standing at a play table. Jack sat in his chair, watching the children with this stare. He had this sad look on his face.He just watched the children stand, walk, and play with a blank stare. The part that hurt me the most was the sad look. It's like Jack doesn't think he'll ever do that. He didn't even ask to play with the blocks.
'sniff'

Happy Birthday!

As I sit at my kitchen table, Jackson in his highchair, I celebrate his 2nd birthday. We are alone. The house is quiet, except for the odd rattle coming from the dryer, and of course nickelodeon is on. Jack cries every time I cough. Evelyn went back to school this morning. Jason did too. I try to be excited and proud for Jack, but I continue to reminisce in the wrong direction. Of course I am happy with all of the accomplishments Jackson has achieved over the past year, even the past two years, but I also have memories of the surgeries, the stays in the hospitals, the milestones Jackson hasn't hit yet, the mannerisms a 'normal' 2 year old has, the mannerisms a 'normal' 1 year old has. . .

I've now moved to the couch and Jackson is in bed! He asked to go to bed! He fussed and cried and pointed to his room. We have to leave in an hour to pick Evelyn up from school, but at least he's happy!

We only had 3 hospitalizations in 2010. Only the one surgery, which was successful! Jack's kidneys have been working GREAT! He missed his 6 months appointment in November but still had the renal ultrasound. He missed the rescheduled appointment in December and the urologist said that Jack won't need to be seen until May! WOOHOO! Jack sat up unassisted in 2010. He started school. Jack says Spongebob (bob bob), book (ook), and mom, and has recently started saying dadad, again (sounds more like uh-gah), go (guh), down (duh), and even said grandma (guhguh) once! Wow!

This picture is from 1/3/11, Jack's 2nd birthday! He's been quite a ham.


I love my little man. I remember the 3 weeks of contractions before he came into the world. I remember feeling like I was going to jump off of the bed in triage, because labor was so intense. I remember the moment I realized that Jack was 6 weeks early. I remember meeting Jackson for 15 seconds before he was wisked away to get oxygen. I remember holding Jack's fingers through the incubator before he was flown to the NICU. I remember sitting in the maternity ward for 2 days without my baby boy. I remember holding him for the first time. . .my list goes on and on.

This is the year of the CFC International Conference. We'll get to meet other children, and a few adults, with CFC. It WILL be a magical moment.