The casting call

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~~~~

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

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!

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!

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

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.

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!