Merry Christmas!

Merry Christmas!

I wanted to say thank you to all of the amazing people who have shown support over the last ALMOST 5 years! Can you believe it?! Jack will be 5 in only 2 weeks! Although our lives have become a "new normal" to us, I've been able to share all the the joys and frustrations of my journey with my cyber world that I know includes real people who care about Jack.

(make sure you check out the link at the end of the blog)

So much has happened since the last time I wrote. We moved right around Thanksgiving. Oddly enough, Jack took to the new house like a champion! He truly understands what the word "new" means. Jack has had a lot of "new" over the last several months (teacher at the old school, van, braces, house, shoes, new school). He'll even have a new wheelchair soon! Speaking of school, Jack started a week ago. He has been doing great and everyone loves him! Instead of a wheelchair accessible bus, a van picks Jack up. There is a lift, just like the bus in Decatur had, but it's at the back of the van. Jack stays in his chair and rides to and from school! Even better? His aide picks up and drops off Jack!!!!!!!!!!! Did you catch that? Jack has an aide! It's quite exciting. Her name is Becky and she works only with Jack. We are very happy that he has someone to help him out at all times while keeping a close eye on all of his needs.

I recently visited the classroom and caught Jack playing Memory with his 3 other classmates. Jack was turning over the cards (the aide and teacher helped prompt Jack) and when he got a match he became overly excited and clapped and squealed and the other kids cheered! It was great! I now understand why Jack says, "Jack's turn." 

(make sure you check out the link at the end of the blog)

Katie and I took Jack to St. Louis Children's Hospital for Neurology last week. This was a very important appointment. The doctor really is great. He spent 90 minutes with us in clinic. He got to see Jack at his best and worst. We discussed Jack's seizure history and his recent symptoms, along with the EEG that was done shortly after that long seizure while we were on vacation. The doctor felt it best to start Jack on an anti-seizure medication called Keppra based on all of the facts. I agreed. Jack has had several short episodes since the big one. Maybe I've been in denial. I don't know. Jack's been on the medication for 14 days (10 days at full dose). He is more agitated (possible side effect). He sleeps better most of the time (as in I don't hear a peep from his room). Does this mean that Jack was having seizures in his sleep? That's sort of scary. He has still had a couple of little zaps, as I call them, but I can only assume that medication hasn't taken the full effect. I'm giving it two weeks at full dose before I call the doctor with an update.

We took the kids to see Santa. Jack told him that he wanted Spongebob, a swimming pool, to walk, and instruments. Yah. I choked back tears. I truly hope he gets that wish from Santa. Or God. Or some other amazing being. It will happen.

In other news, amazing things are happening with CFC International. A wonderful mom in Florida created brilliant awareness pictures to go along with Advent. Instead of sharing 24 pictures, I've provided a link to a slideshow that she created once the project was complete. Please enjoy.
CFC Christmas Slideshow

Merry Christmas and Happy New Year!
May 2014 bring more wonderful surprises our way and maybe Jack will get his gift from Santa!

Love,
Becky, Jason, Evelyn, Jackson, and Katelyn

Wow-e-wow-e-wow!

Where do I start...
I tend to think backwards lately. Well, actually, most of the time. It's easier for me to recall the craziness that is my everyday life! I'm going to make every effort to go in order of events...you have been warned!

There's a chance that this post will be long. I have so much to share!

Ok. Here goes.

Jack recently saw Orthopedics for his annual spinal and hip x-rays as well as a new script for his AFOs. His hips look good! We see a lot of hip dysplasia with CFC Syndrome. I'm please to know that this is something we don't have to worry about. Jack's spine still has a curve. It is apparent to the therapists with touch. I could see it on the x-ray this time. Scoliosis is also very common with CFC. I just took Jack to get his feet casted for the new AFOs. We are going with the psychedelic rainbow design again. Jack doesn't understand choice questions when he doesn't already know the outcome. I started to ask him if he wanted rainbow braces again or something else. He easily said rainbow brace. It quickly turned to a listing of all of the different colors; red brace, blue brace, black brace, green brace, etc. I decided we'd better stick with what we know.

Halloween came and went. We don't do too much celebrating. We've never gone house to house. It's always too cold, or too windy, too rainy, etc. I let the kids dress up and we trick or treat at our church. Maybe once we move we'll be able to go door to door. Only time will tell. Anywho, Evelyn was a cat, Katie was Minnie Mouse, and Jack was Cookie Monster. I went one-up with his costume since he was in his wheelchair. I designed a cookie jar (last minute) for Cookie Monster to be sitting in. There's an entire community of TOTALLY AWESOME costumes created around wheelchairs!

Jack really liked having the bucket at his feet. He carried that Snickers bar in his hand all evening!

Cookie Monster!

 Jack had his wheelchair evaluation so we could apply for a new self-propelled wheelchair. With Jack entering Kindergarten next fall, we need to consider his needs. His current chair is big and bulky. It has served its purpose but it's time to let Jack be at the same level as his peers. He'll still use his walker and we'll be working hard on walking. However, it's time to give him some freedom. Much to my surprise, and the therapist's, Jack quickly figured out how to propel himself in the sample chair. It got to the point where Jack ran himself into the stroller and his current wheelchair! He was giggling! The therapist was even able to assist Jack in getting in and out of the sample chair.

What an awesome chair! I sure do home insurance approves this! Jack could have so much freedom!

I also recently took Jack out to St. Louis Children's Hospital for his annual renal ultrasound. This is always a stressful appointment. We really don't want to have to go back in and have more surgery done on Jack's kidneys. Thank God! The left kidney is no longer dilated! This is the side that was not operated on. The right kidney is still labels as stage 2. It has been stage 2 since 2010. Yahoo!!!! No stones seen. No sludge seen. Back to urology in one year. We see Nephrology this December.

Jack is at his current school for one more week. He's doing AMAZING things there. I received a picture that almost floored me.

No hands!

Jack is holding onto his shirt with all of his might. But look! He's standing! No hands! I've even heard that he's taken a couple of steps. I tried to get a video of Jack a couple days after this picture was taken. The videos are below. As you will see, Jack was back to his stubborn self!

Last week, Katie was snacking on applesauce. Jack decided that he wanted some as well. He licked the spoon many times. This picture is silly!

We've had this bounce and spin zebra since 2007. Jack hasn't had an interest until NOW!!!

Finally, the blenderized diet seems to be going well! Jack was weighed last week. He has gained half a pound! We are trying a higher calorie blend at the moment; more calories and less volume. So far so good. We had a vomit incident this evening. I'm guessing it's because Jack is struggling to poop. I only gave him his Generlac once a day for a couple of days instead of twice a day. He recently started to say "owie" when he hurts. He was telling me he hurt and next thing I know, out it all came...poor boy.

Anywho...that's what's been up! We move in 2 weeks!!!!!!!

Another great article

Great read about a coach's son with CFC Syndrome

Interesting Article

Read Me

Real Food

Ok, before I get to the title, a lot has happened!

1.) Jack finally had his echo. Somehow, it was forgotten back in July during all of the procedures and exams while Jack was in in the operation room. Whatever. Big surprise? Not really. Well, to make a long story short, Jack had his echo while awake and did great! He barely fussed! There was no change since last year, which is totally awesome! He still has a murmur and aortic stenosis, The hole in his heart is closed. Something was seen where the hole used to be but it wasn't clear because Jack must have been fussing at that point. It isn't a worry so we go back for another echo in one year! Yippee!

2.) What is Jack saying? He says this every now and then and I'm always stuck for quite some time. Can you figure it out? "Zooweebuh." I'll tell you later on.

3.) Jack has had two more seizures since the long one while on vacation. Both were very short. I still haven't called the neurologist. If I do, we have to put Jack on Keppra. We aren't ready for this yet. If the seizures get regular I don't think we'll have much choice. Until then...

3.) As we expected, Jack was losing weight on the Elecare Jr. His body just doesn't absorb elemental formula. I could see it in his face before we even had him weighed. Jason and I took Jack to the nutritionist. She wanted to add Duocal or Benecalorie to his diet. Both are powder supplements that are added to the formula to add calories. My goal is to take Jack off of most of the medications he is on. Because of this, I asked about getting Jack on something called a blended diet. A blenderized diet is exactly how it sounds. Real food blended into liquid form. The nutritionist was all for it! She gave me a guide for one meal replacement a day.

1 oz meat (canned or boiled chicken)
1/2 cup fruit/vegetables (applesauce, bananas, pears, peaches, green beans, peas, carrots, spinach, or corn)
1 oz grains (wheat bread, cheerios, rolled oats, cream of wheat, or other grains)
1 tsp fat (vegetable oil)
liquid to thin it out (Elecare Jr)


I'm not going to get into specifics because this is the second time I'm typing this post (I accidentally deleted the original draft even though I checked a different box and doubled checked my check before hitting delete and the wrong one was still deleted and not recoverable because it was a draft!).  If there are grammatical errors, too bad!

Jack is already gaining weight! He has hit 29lbs for the first time!!!!!!!! I just washed up an entire basket of fall/winter Jack clothes from last year. The clothes are still too big and he gets to wear them two years in a row. However, I might get to buy a size bigger for the first time in more than a year!!!!!!

One of Jack's first meals. Wheat bread, chicken, green beans, and vegetable oil.

The results.

One meal ready to go.

Eating REAL FOOD!

Now, Jack handled the first two weeks great! We had to ease into feeding an entire meal of real food. Jack's belly wasn't used to it. The difficulty came with the syringes, the blenders I was using (a Baby Bullet and an immersion blender). The syringes don't push thicker liquids well. I solved that problem easily. I ordered special O-ring syringes online. Once they came, I could tell immediately why they were recommended by the Blenderized Diet community. The other difficulty came with my blenders. I couldn't get the food blended well enough. I was battling clog after clog. The pressure of the syringe was also backing up, causing messy explosions of food all over Jack, myself, and the kitchen.

The blenderized diet community recommends a professional blender to create these meals. I followed their advice and started looking. I found the Blendtec to be the way to go. I was instructed to write the company a letter sharing Jack's story and his history with feeding. If all went as planned, they would provide me with a blender, free of charge. The plan didn't work. I was offered a refurbished blender at a medical of discount of $300 plus $18 shipping. Uhm... no. I contacted Illinois Assistive Technology and asked if a blender would be covered as assistive technology because it helps Jackson with his daily living and it would be considered a medical device The company agreed that the blender would benefit Jack and usually provides assistive technology for free but because the blender is not standard assistive technology, I could apply for a cash loan. Uhm... no. Christmas and Jack's birthday will be soon. I figured we'd just ask for cash gifts for Jack and purchase the blender once we had the money.

Somehow, God had a plan. Someone I have known for quite some time donated a Blendtec blender to Jackson. It wasn't asked for. I didn't make any implication that I was asking for help. I simply shared on facebook that I made a disaster of a mess with my current blenders and was battling the system to try to get what was needed. The donation came from a family that usually gives one family Christmas each year. The wife has watched and read about Jack since the day he was born. She said that we are an inspiration. I guess I'm humble because this is just the life we were given, but I'm still gitty each time I make Jack's food!

This is the AWESOME gift that came on Monday! I am so thankful. I don't even know how I can ever say thank you an appropriate way. There are no words.

Here are two meals blended and ready to go. The blender completely liquified the contents. AMAZING!

4.) Did you figure out the word? Zebra.

5.) Here are some fun pictures of Jack! We're moving to a new town just before Thanksgiving! That will have to be another post for another time!

Eating a mini cake cone filled with chocolate coconut milk ice cream. Jack looks so grown up!

Look who's standing and only holding on with one hand!

Boom Chicka Boom Boom, Can I Hear Another Tune

[Disclaimer: Jack's hair is short. It is VERY short. This was not planned. Family and friends support Jack, hair or no hair.]

Illinois State University did it again!

Jackson and his family traveled to campus for "The Young Person with Disabilities Guide to the Orchestra" on Saturday, September 14th. This year's concert featured the ISU Orchestra. The description of the concert is as follows:

• An adapted orchestra concert for children and adults with developmental, hearing, vision, physical disabilities and autism. All ages and their families are welcome to this free, inclusive and interactive concert.

Another description of the concert:

• The Illinois State University Symphony Orchestra will present a concert for children and adults with cognitive, physical and behavioral exceptionalities. The Young Person with Disabilities Guide to the Orchestra concert will feature music by Benjamin Britten and narration by School of Theatre and Dance faculty member Kim Pereira. The interactive concert will give audience members a chance to make music along with the orchestra and will also feature a pre-concert "instrument petting zoo."

The Arrival
I checked us in and Jack was assigned a helper. The helper was a Special Education major who also happened to be a musician. At the check-in table we had a smorgasbord of shakers to choose from. We were delighted to learn that the instruments were not only to be played during the concert but also at home! I felt like we were at a buffet, or better yet, a farmer's market! Why? The baskets were filled with apples, bananas, oranges, ears of corn, carrots, grapes, and cucumbers, as well as ring shakers, mini rainstick shakers, and glow in the dark maracas. After sampling EVERYTHING, we assisted Jack in choosing a banana, orange, apple, the ear of corn that also included a drum stick that could hit the corn or rub against it, a ring shaker, and the mini rainstick. We couldn't forget the two other kids in our group. I didn't want them to feel left out. We proceeded to the "instrument petting zoo." The concert began a short while after.

"Instrument Petting Zoo"

Jack visited most instruments, including the violin (twice!), French horn, trumpet, tuba, trombone, clarinet, flute, bassoon, oboe, saxophone, and percussion. We skipped the viola, cello, double bass, and harp. Jack had the opportunity to make requests for his favorite songs. Any guesses? Yep! "Twinkle Twinkle Little Star." He was very bossy!

The most awesome drums in the world! They make cool sounds and light up when hit with a rubber mallet! We need to get these for home!

I love how this picture turned out! Jack requested songs at each stop. He requested "If You're Happy and You Know It" for the trumpet. The best part? We had a group of 8 clapping at all the right places!

Of course we stopped by the drums!

We almost gave him two sticks! I can't imagine the fun that could have been had, or the injuries from flying drumsticks...

The concert was wonderful! The narrator spoke during the performance and introduced each instrument as the orchestra weaved in and out of melodious themes. Jack learned to say "bassoon" and he was mesmerized when the cellos played a lovely melody. His ears perked up when the flutes played, eyes opened wide when the trumpets sounded, and continuously told us about the violins.

Ready for the concert to begin.

Playing along with the orchestra!

Digging the music!

We have a television star!
Jack also made the news! The link below is a news spot, or whatever it's called. Here's a picture I grabbed of Jack as well! And...it was his favorite part of the "instrument petting zoo!" Don't forget to check out the link.

Copyright 2013 Nexstar Broadcasting, Inc. All rights reserved.

ISU Orchestra Performs for Disabled Youth

Little School Boy

Check out what Jack did with his teacher today! I am so unbelievably proud!!! He's never shown this skill at school!!!

Shame on Me...

Ok...I can't even begin to share how extremely excited I am about this picture. I would probably get into so much trouble if GI knew about this...no milk products for Jack. How could I say "no" after the first taste!  We don't even know 100% that Jack is allergic to milk, although all signs point to yes...

This is Orange Cream Pie light yogurt. It was my snack. Jack asked for a taste. He didn't stop until we finished the cup between the two of us! He licked the bottom of the spoon. He licked the TOP of the spoon! He ate between 3-4 tablespoons!!!!!!!!!!!

What's a mother supposed to do when her child can't eat by mouth, is instructed to remove all milk products from his diet because of EE (eosinophilic esophagitis), but WANTS to eat yogurt?!!!

Great Things Come in Small Packages

Today I'm writing to share some pictures. I don't have much to say. We haven't had any problems. We haven't had any new diagnosis. The drama has been limited. Life has been pleasant. We are blessed and I wouldn't want my life any other way. There are many families who care for someone in the special needs population who have struggles every single day. We are blessed to have Jack and I am full of joy sharing these pictures with you!

Playing guitar with dad! He's feeling the vibrations of the guitar strings with his mouth!

Jack said, "chips belly," while I was giving him some water. Smart boy.

I finally got some pictures of Jack at school! He's walking to the carpet for music time! You can see just how tiny he is compared to the other 3 and 4 year olds in his class.

Look at our little man, holding on with only one hand; no braces on his feet!

Here's perspective of just how tiny Jack is. I'm ok with that! Great things come in small packages!

Perfect Peace

Before I share this link to a song I sing just about every day,  I had to celebrate a great encounter Thursday afternoon while out to lunch.

Jason and I took Jack (and Katie) to the nutritionist this morning to discuss Jack's new diagnosis of Eosinophilic Esophagitus along with the formula switch and depletion of milk from Jack's diet. He is most likely allergic to milk. There is a chance that this allergy won't show up on a blood test! So all the formula changes at birth were valid/lots of vomiting from milk allergy. Last years formula before recent switch =allergic hence EoE.. 
  :'(

Back to the encounter: an older lady came up to me and gently touched my shoulder. She said, "you have beautiful children. Special children. You are a special mom for a special child." I was caught off guard. I didn't know what to say besides, "Thank you.They are both special to me." She then informed me that she grew up with a special needs sister and that she understood completely. That made my day and made up for the rude customers while out to dinner a month ago.

Here's the beautiful song.

https://www.youtube.com/watch?v=l6eDvl4Xbh8&feature=youtube_gdata_player

Post Conference Video...

On the last night of the CFC International Medical Conference, a compilation of photos that were taken during the event are shown. These photos were put to music and a video is now available to watch at www.cfcsyndrome.org 

It brought me to tears. The joy can be seen, not only on the faces of those affected by CFC Syndrome, but also by the families. It's long, almost 15 minutes, so please be prepared.

This is the way we pack the car...and share more news...

It happened. That's right! Our 3rd ever family vacation!!!!!
I can't believe the list I had for packing. Well, actually, it's Jack's list that takes up an entire page.
Here's what I had to pack to take Jack out of town for 5 days:

• Box of formula (that's a case of 25 individual servings of formula)
• 6 Farrell bags (1 extra)
• 6 feed bags (1 extra)
• 6 big syringes
• Feed pump
• Pump charger
• Pump backpack
• Pole
• 15 Generlac syringes (1 extra day) - Jack won't poop without it
• 15 Erythromycin syringes (1 extra day) - Jack won't poop without this one either
• 15 Cytra-K syringes (1 extra day) - kidney medication to keep stones from forming
• Bottle of CoQ10-muscle deficiency
• Measuring spoon for CoQ10
• Eye ointment - for damaged cornea and to keep eyes lubricated
• Clonidine - we like when Jack sleeps!
• Spoons to crush clonidine and Prevacid
• Prevacid - we usually give a compounded liquid version but it has to be refrigerated
• Medicine cups
• Poop bags - lots of poop bags!
• 2 packages of diapers - we almost ran out!
• 2 packages of wipes - we ran out and there were two more packages in the diaper bag!
• Extra g-button kit
• Emergency kit to change out g-button
• Swim diapers
• 7 Belly pads 
• 2 swim trunks
• 2 rash guards
• 4 pajamas
• 6 outfits (1 extra)
• Toy computer 
• Toy star
• Books
• Blocks
• Beach towel
• iPad and charger
• iPod and charger

Where We Went:
Jason and I took the family to visit my side of the family and then to an indoor waterpark.

Visiting Family:
We started out the trip traveling to my parent's house. Everything was superific! Seriously! We had a great visit with my family! I had a wonderful conversation with a blog follower who happens to also be my parent's neighbor! It was nice to talk to someone who knows Jack through this blog and had the pleasure of spending some time with him. He was very pleased to see that Jack was full of joy. I don't think about it, but Jack really is a happy child. He has his moments when he is what we like to call "Angry Jack" but there are many moments when Jack is just, well... happy. By the way, "The banana bread was delicious!!! Thanks!"

While at my parent's house, Jack and the kids got to see my sister and her family, as well as my Aunts and parts of their families. Jack seemed to enjoy the busy environment. Then again,  he spent most of that day playing with toys, ignoring the chaos! This doesn't really surprise me. He likes to keep to himself. We spent our first night since 2011 in a hotel. The last time we stayed away from home, Jason and I attempted to have Jack sleep in a pack n' play. That was the night when Jack didn't sleep the ENTIRE night and mainly screamed. To avoid a repeat, and also for safety reasons, we placed the sleeper sofa mattress on the floor. We covered it with extra blankets (Jack's diaper leaks overnight and we didn't want to chance 'feeding the mattress formula') and surrounded the sides not against the sofa with pillows. The first night went well... Jack moaned and whined like he usually does.

I know you're thinking, "And then what happened?"

1.) Not even 5 minutes before some relatives arrived for a dinner party the 2nd day or our trip and visit with my family, I noticed that Jack was poopy so I carried him to an ideal changing spot. As I placed him on the floor, I discovered a blowout all down Jack's leg. I looked down at my waist, hip, and leg. "Yep!" I had poop all over me. "Just what I want my family to see." I got both of us cleaned up and our clothes changed (at least I was able to wash our clothes). Anyway,  after that experience,  the day went nice and smooth. We ate. Jack tasted.  We talked.  Jack jibber-jabbered.

This is when you say,  "Well, that didn't seem too bad. Hope the rest was nice and simple." Well...I'll get to that later.

Family Vacation:
Sunday evening I drove the family to Grizzly Jack's Grand Bear Resort. It's an indoor waterpark and indoor amusement park. We set the room up for Jack just like the night before. After a couple hours of relaxation and Spongebob marathons on TV, it was bedtime. Jack was medicated with his Clonidine (the pill that helps him sleep) and we all went to bed. Everything went as usual. Jack moans out of discomfort. Jack cries for his froggy. Jack calls for me (actually, this one is fairly new). I was up and down for several hours. Then 'it' happened. Jack had a seizure.

I knew it was a seizure right away. It was dark in the room. The only light I had was the soft blue glow of the screen from the charging feeding pump and the distant yellow from the cracked bathroom door. Jack was screaming a scream I haven't heard since 2010. I grabbed my phone and sat in the dark next to Jack on the mattress on the floor. His arms and legs, simultaneously, began to jerk. I glanced at the time. 1:42am. Katie woke up and was crying. I called out to Jason and asked him to calm her and made him aware of the situation. I attempted to record video of the seizure for the neurologist but the light was just too bright. Not worth it. I continued to watch the time. Three minutes have passed. Jack is still seizing. I picked him up. His eyes were wide open. He was screaming. His arms and legs jerked on and off. No change. I placed him back on the bed. He rolled on his side and continued to seize. Four minutes. Five minutes. Should I call 911? He's breathing. He's screaming. Of course he's breathing. He isn't hurting himself. Does it hurt? Why does he scream? I don't want to go to the hospital while on vacation. Six minutes. It starts to slow, quickly, and what seems like out of nowhere, Jack says, "all done," and "go away," and falls fast asleep.

This is what I wrote once Jack was asleep. I needed to have a script to follow when I talked with neurology in the morning.

~1:42/1:43am (Monday) 5-6 minutes. Screaming. Quick jerks of limbs. Trunk/head not involved. Jerks every 2-3 seconds. Like being zapped with electricity. Blood curdling screams. Slowed down jerks at the end. Calmed quickly. rolled over to belly and went to sleep. Next day/morning-pale. Tired looking. Very clingy. Only wants mom.

I called neurology first thing in the morning and informed them about what happened. They spoke to the doctor and then called me back. The neurologist wanted labs drawn but said that we could wait until we returned home from vacation to have an EEG done. So, on our first full day of vacation, Jason and I took Jack and Katie (so she could nap during the drive) to a nearby hospital to get some labs. To clear that sentence up, Jason's parents came along on our vacation to help us out with the kids. It's like they knew we'd need this sort of help! They stayed with Evelyn, who made them swim, and swim, and swim...

The remaining two days of our vacation went nice and smooth. Monday was a hard day because Jack was pale and clingy, only wanted me, and was very whiny. Tuesday was great! Jack was filled with energy! He went in the pool several times and had such a good time! Wednesday was good as well! We spent most of that day in the van and at home cleaning up. Jack was happy!

Time for milk!

Jack's favorite place! He was very happy in the toddler pool. He scooted all over!

The Lab Results:
I got a phone call with the Lab Results on Tuesday. Everything was within normal limits. What does this mean? Jack isn't sick. Nothing that was tested from the CBC (Complete Blood Count) and BMP (Basic Metabolic Panel) caused the seizure. I wasn't very happy about that...
 
The EEG
My mom drove down to us on Wednesday night to stay and get Evelyn to and from school and to keep Katie home. I didn't want Katie in the room during the test. She might be too distracting to Jack! Probably the other way around, but it was just easier.

The night before the EEG I made sure to keep Jack up late. I also woke him up early. The patient needs to be tired, especially for the sleeping portion. He was NOT HAPPY that I woke him up. I prepped Jack for the EEG by calling it a head test (I told him we had to go to the hospital for a head test. I let him know that he would have little stickers all over his head and the stickers would have strings on them). Did this work? Sort of. We kept Jack in his wheelchair during prep. I had to hold his hands while also playing music and games on his iPod, or 'little iPad' as he calls it. Jack screamed the entire time the electrodes were being glued to his head!!! Big surprise? No. Jack did settle down once the gauze was wrapped and taped on his head. I told him this was a hat. I removed him from his wheelchair and we climbed on the bed. Did he like this? No. He wanted back in his wheelchair; his safety zone. I placed Jack on my lap and attempted to have him look at the tech.

The first part of the test involved having Jack close his eyes for 20 seconds. Was this easy? No! Does this surprise me? No! I had to cover his eyes while he battled me. The second part of the test was a strobe light. The light flashed at variable speeds, on and off, for a few minutes. Did Jack like this? Sort of! He said, "Chuck E Cheese!" I had some trouble getting Jack to look at the light the entire time. The room was dark and the light was bright. Jack + bright light = not that great. The third part of the test was the sleeping portion. Jack was supposed to go to sleep. Did he? Yah, right! The room was dark. I had soft music playing. Jack sat on my lap and his legs straddled me. I tried to coax him into laying his head down. Did he sleep? No! Instead, Jack talked the ENTIRE TIME. I'm sure the tech was entertained as she watched us on the video camera!

Once the EEG was finished, everything was taken off Jack's head and he was washed up a bit. We packed up and headed home.

Extremely comfortable on the way home!

The Results:
I called the neurology clinic first thing Friday, the day after the EEG, and let them know that the test was completed. I knew it was bad when my returned call was from the neurologist instead of the nurse. To cut directly to the point, there was a difference between the EEG from 2010 and the one on Thursday. The EEG showed abnormalities in the front left lobe. With all of Jack's developmental delays, his syndrome, his seizure history, and the EEG results, Jack has a 90% chance of having more seizures. We discussed our options after talking about why the seizures have happened. Medication was recommended but not necessary unless Jack has another seizure. It is not likely that they are caused by heat or humidity, but it is possible. Some people have seizures when certain words are said or when they are touched a certain way. It's more common to seize from illness or lack of sleep.

The Plan:
For the time being, I'll have a rescue medication, Diastat, available if Jack has a seizure that lasts longer than 6 minutes, the length of his most recent event. If, after giving Diastat, and Jack still seizes for 5 minutes more (a total of 11 minutes) we must call 911 or drive to the hospital. We won't get Keppra prescribed unless/until Jack has another seizure. I'm hoping that Jack is in that 10% and he'll never have another one. If he is at 90% risk, I pray we have another 3 years before those ugly seizures show their face.

No food by mouth?

Phew...
That's what I have to say about that.
I have been talking with the GI nurse.  She had a talk with the doctor about the issue of no food by mouth. Jack has been cleared for tasting as long as we bypass any milk products. This means the obvious tastes like ice cream, cheese, and yogurt. We must also restrict tastes like Goldfish crackers, Doritos, pudding, sourcream and onion chips, ranch chips, ranch sauce, and anything with a milk protein (whey or casein). Of course, something besides milk proteins could be causing the EoE.  It could be a meat or poultry protein or: An additive like a dye; corn syrup; canola oil; coconut or palm oil. I got that list from the ingredients in Jack's current formula diet, which Compleat Pediatric. I don't know if someone can be allergic to vitamins...the formula is packed with those as well. The doctor is starting with the basics. Milk lactose and milk proteins.

I cannot express in words how happy I am that we don't have to hold back tastes! Each meal we would sit and say, "what are we going to do? He keeps asking for food. How can we do this to him?"

The new formula has been ordered and is awaiting insurance approval. Jack will need 16-20 cans per month, at a cost of $169/case of six. Hopefully we can start it by the end of next week.

Here's a fun video! I love moments like this!

https://www.youtube.com/watch?v=A_lf1GSIjZY&feature=youtube_gdata_player

Sandwiching...

The title of this post is Sandwiching. Sandwiching is when you say a good thing, followed by a not-so-good thing, finished by another good thing. Teachers use this technique in the classroom all of the time!

We have the results back from Jack's most recent surgical experiences. Before I get into that, here are some recent saying from Mr. Jack-Jack:

1.) A while back, Jack asked me if Barney (from TV) has a tubie in his belly.

2.) Katie was sick and very cuddly. She was crying, a lot! Jack said, "Katie sick. Go hospital?"

3.) Jack sang this:
           To The Alphabet Song: ABCD toothbrush toothbrush

           To Twinkle Twinkle: Twinkle twinkle bicycle bicycle Jingle bells jingle bells jingle all the way

Okay. Time for reality. I guess we should all expect what I'm about to say. The biopsies of Jackson's esophagus and what the GI doctor saw are in agreement. Jack has been diagnosed with Eosinophilic Esophagitis, or nasty eczema all over his esophagus. We were sure when the doctor showed us the images from the biopsy that this was going to be the diagnosis. I should scan in the images and show you Jack's esophagus, stomach, and small intestine. Uhm....that's ok. You can do a search on what eosinophils are all about here, or just type in the phrase and you can see an image of the inside of an esophagus with symptoms of Eosinophilic Esophagitis. If you REALLY want to see Jack's images, I'll gladly scan them in. Just let me know. It's not really gross. Then again, not much is icky to me anymore...I'm sure you know why!

The plan:

Start Jack back on an elemental formula. Jason and I aren't all too happy about this. Jack was fed Neocate Infant and Neocate Junior up until this past August when he was switched to a 'real food' liquid formula diet, Compleat Pediatric. We took him off of the elemental formula because his allergy test said that he was no longer allergic to milk. Magically, once the Compleat was started, Jack stopped vomiting and started to gain weight. 

Jack needs to go back to an elemental formula, this time Elecare, to get the EoE under control. This is very confusing to me, mainly because Jack is tube fed. It's not like a lot of food travels down his esophagus, causing the inflammation. Jason and I are also upset because the GI doctor wants Jack to stop all oral feeds while we run a trial. The one thing Jack enjoys is tasting food. He only swallows saliva. He won't understand why he can't taste anything. I'm hoping we can let him only taste the plain foods (crackers, plain chips, cheerios). I'll have to talk to his doctor to clear this. Jack sits at the table with us and asks to taste the different foods from our plates. He truly enjoys tasting. He has even been sipping from a hard-spout sippy cup!

* We will also be trying an inhaled medication that could control inflammation. I don't have a name 

   for this yet but you can learn about the procedure towards the bottom of this page.

* That is all. The Hirschsprung's Disease biopsy results came back negative. Jack's poopy problems 

   are not caused by a nerve issue. It's most likely because of his low muscle tone.

* I will be creating a note card that can be kept in my wallet with Jack's diagnosis, medications, 

   surgical procedures, and physicians. I just can't keep it all straight anymore!

* I have begun preparations for our 3rd ever family vacation. Wow...Jack's list takes up an entire 

   page. I'll write about that some other time.

To end on a happy note, here are some recent pictures!

Jack accompanied himself to "Twinkle Twinkle Little Star"

Evelyn is 7 years old now. This is directly after she got earrings!

Jack, Jason, and Katie. Jack had a wonderful time outside in the sun. He did very well!

Katie is 1 year old. She is beginning to take after her brother when it comes to getting in trouble!

Maybe he'll poop!!!

Jack is much happier at home! He's still pale and weak and his formula is moving very slow, but he's HOME!!!

Keeping Busy

Good news! This picture is already outdated. It's from Saturday before Jack came home. That's right! Jack came home Sunday night!!! The final picture is of Jack while still admit at Decatur Memorial Hospital.

This is what Jack did most of the time.

My pictures are out of order and I just don't really care to fix them right now. Katie is taking a nap and Jack is in his bed playing quietly while eating. He's been awake since 4:30am. Jack woke me up, retching and moaning. I quickly turned off the feeding pump. As I was looking Jack over, he turned and looked at me and said, "Hi. Go couch." I'm like, "It's still dark out. You should go back to sleep." Jack says to me, "Sit couch. Watch Spongebob." So, because he's been in the hospital and he's recovering from everything, and he was retching, I gave in and got him dressed. We hung out until a little after 6am when I just couldn't keep my eyes open any longer. I put him back to bed with toys. Jason got up shortly after that and took over. Super dad!

I'm glad that Jack is resting. Maybe he'll poop!!!!! That would be miraculous! He had a poop Monday morning, which I wasn't expecting to happen so fast. That's a wonderful sign. It means that his intestines are awake, once again. Of course, he hasn't had one since, but we're moving along, trying to get the formula in at a larger volume. Jack is acting close to himself, other than laying around more than usual. He's sat in his highchair and tasted salted chips at least six different times!

And...Evelyn just came from Jack's room stating that it stinks in there! YIPPEE!!!! 

Anyone want to hold Jack's hands for me?!

 

things are looking up

Things are looking up for Jackson. I'm so happy to be sharing this news. Once again, we are simply following the agonizingly slow process of waking up Jack's intestinal tract. Nobody officially said that Jack has an ileus but Jason and I are treating it as such. Our local hopsital's medical staff is wonderful. They allow Jason and I to call most of the shots, at least when it comes to when and how to wake Jack's gut up.

Saturday was a hard day. Jack spent the entire day and overnight in and out, most of the time sleeping with his eyes partially open. He would wake about every 20 minutes and moan, retch, and cough. He was so uncomfortable. I felt so useless. Tylenol didn't help at all. I couldn't help him. I would change his diaper. I would vent his belly and, if I was lucky, get a little puff of air. I was constantly watching the draining Farrell bag to see if Jack's intestinal tract was moving.
     
          Instead of hooking Jack up to a suction on the wall and pumping his stomach, we used gravity to
          empty Jack's stomach contents. The bag was placed on a towel on the floor and it was collecting
          the stomach fluids, from Jack's g-tube, which included dried blood and bile. The nurses emptied
          the bag every 4 hours and measured the contents while noting the consistency. We want Jack's
          stomach fluids to look like saliva. His was dark green, then orange, then dark yellow, and finally
          yellow, all with pieces of dried blood.

At one point late last night, I noticed that the contents in the bag were starting to look slightly better. I vented Jack's belly and gave him 10ml/2 tsp of Pedialyte through his g-tube. A couple of hours later I repeated this process. He settled down quickly after each process. Things were looking up!

This morning, I was talking to Jack and he told me he was hungry. I placed Pedialyte in a feed bag and fed Jack 15ml over one hour. He tolerated that feed so I fed him the same for another 3 hours. The Hospitalist came in and we discussed Jack's progress. He asked me if the glycerin suppository helped to produce a poop? "No." He asked if we ever use enemas and do they work? "No." We discussed Jack's constant discomfort and how the Tylenol wasn't helping. He prescribed Toradol through the iv.

Within 10 minutes Jack asked to brush his teeth! We gave him a sponge bath and dressed him in clean pajamas. His bedding was also changed. We got Jack out of bed and sat him in is wheelchair. Jason came and switched places with me. As I was leaving, Jack was talking about riding horses as saying "wee" and "funny." What a change! The Toradol, an NSAID, was just what he needed. It's times like these that I wish Jack could communicate better and tell us that he hurts and where the pain is. Jack is currently receiving 20ml per hour of watered-down formula! His usual dose is 225ml over an hour. He has been resting and only fussing a little. I had to vent some gas from his belly once, and he is currently sleeping with Spongebob on in the background.

I'm back at the hospital again and sent Jason home. My amazing mother has been staying at my house since Wednesday. She's heading back home today. My mother-in-law came and helped out with Evelyn, Katie, and the dogs on Thursday and Friday. They spoiled the girls and helped out with my household chores. They helped Katie celebrate her 1st birthday on Saturday (we had a party a couple of weeks ago). We have such wonderful family support. We couldn't be here fully for Jack without their help.

and so it goes

To begin with some lighthearted fun, here are two words Jack says that ALWAYS makes me giggle.

Hammerburger
Strawbabear

I wanted to start with something cute because, as usual, we've got complications.

I'm sure you remember my nervousness about not being very nervous for Jack's surgical procedures. Well, the night before I started to get nervous. The morning of, I was very nervous. For half of the drive to St. Louis, I was partially nervous. By the time we arrive and checked in, and waited, and got a room in Same Day Surgery, and waited, and signed several papers and answered many, many questions, and waited, and waited, and waited, and waited, and gave Jack a wonderful calming drug called Versed, and waited, and took Jack back to the operating room, and got dinner, and waited, and waited...I was doing just fine.

Jack did very well with his surgical procedures yesterday. Timing was pushed back a few times but all four procedures were completed within 2 hours! This is great! He didn't go back to the operating suites until 4:20pm but was in recovering around 6:30pm. This is super, because he saw so many specialists. Here are the preliminary results.

GI was first. While the scope was performed, the doctor took three biopsies (esophagus/stomach/small intestine). She noticed some signs of a disease called Eosinophilic Esophagitis, or EoE in the esophagus. These signs were also at the entrance of the stomach. I was wrong about the other procedure from GI. Jack actually had a rectal biopsy. The rectal biopsy will determine if Jack has that disease I mentioned in previous posts, Hirschsprung Disease. Anywho, we won't have the results of either for a week or two.

Dental was next. Jack's teeth are great! No cavities! Back to clinic in 6 months.

The echo was performed and then he had his eye exam. We won't know how the echo and EKG went until I call Cardiology and the request the reports. Good news from vision as well! Jack did not need to have his lower eyelids stitched. The damage is minimal, meaning the Refresh PM ointment I am putting in Jack's eyes is working! We do need to call for an appointment in a month. The doctor didn't like that Jack is so sensitive to light. I'm thinking in my head, "He always has been and I've told you every time." I'm not going to even begin to analyze the reasons why Jack needs to go back to clinic in one month. Vision is essential.

Before I get to Jack's recovery, here are pictures from our eventful day!

Tubie Bear was a good little patient. He had a bracelet just like Jack, and had all of the same preliminary exams.

Jack wanted nothing to do with the bed. He insisted on staying in his wheelchair. This is while we waited...

We discovered this sign on the outside of Jack's room after we took him to the operating suites. We want to make one for home.

This is post-op after we left recovery. Jack was out-of-it still and we did everything we could to make him comfortable.

Now on to recovery...

Jack did well except for vomiting up some nasty dried blood and icky pieces of tissue. Everyone thought this was partially normal since Jack was intubated and had the scope performed. Well, once we made it back to our room, Jack was still out-of-it and insisted on sitting in his wheelchair. We played music for him and sang him songs, using whatever words Jack wanted.

        Example: "If You're Happy and You Know It"

                    If you're happy and you know it, heart test

                    If you're happy and you know it, ear test

        Example: "Twinkle Twinkle"

                    Sing the melody but use any word that Jack says.

While awaiting discharge, because we thought that everything was going to be fine, Jack vomited again. We should have taken this as as sign. However, many people vomit after anesthesia. We were on the road around 8pm. Jason sat next to Jack. We had a drain set up, helping with the gas in Jack's belly. Jack ended up vomiting at least 10 times. The fits got closer and closer together as time went by. We got Jack home and in the bath. He was happy and enjoying the water. He was also exhausted and having trouble keeping his eyes open. We got Jack to bed and had towels ready for any vomit episodes. By 1:30am, Jack was retching and vomiting every few minutes. It was time.

We took Jack to our local ER. Sadly, we waited and waited again. We got right back but had to wait once in a room. Once the doctor came in, Jack had a chest x-ray and abdominal x-ray performed. He was then given an iv and blood was drawn. After that, a bolus of fluids was given, and that amazing anti-nausea medication, Zofran, was given through the iv. The doctor came in and wanted Jack admitted. 

That's where we are. Jack either has Cyclic Vomiting Syndrome or another ileus. I've contacted GI in St. Louis and they are aware of Jack's situation. I've looked back at Jack's history and there is an odd consistency with Jack's admits for these vomiting episodes. This is why I'm unsure of the CVS or ileus. I plan on spending some time looking at dates while at the hospital today. 

Jack spent all of Friday in bed. He was weak and couldn't keep his eyes open. We have been constantly draining the fluid from Jack's stomach while he is on iv fluids. We're watching the color and awaiting for the color to look light and healthy, showing signs that digestion has started. We attempted some pain medications for his fever via g-tube a couple of different times. He vomited the medicine both times. I don't think his gut is awake. Jason spent the night with Jack and I came home to help with the girls and dogs. I'll be going back to the hospital today and trading with Jason. Labs were drawn this morning, Saturday, and there is talk of trying some Pedialyte later today. I disagree with this plan, as long as the stomach fluids are still showing signs of bile and dried blood.

I don't want Jack in the hospital any longer than needed, but I also don't want to cause him anymore discomfort.

Please send prayers and good thoughts to Jack's recovery and our sanity.