splash

I haven't written in a while. Sorry. The holidays have gotten the best of me. Plus, Jason has been home, which is wonderful! And. . .we've all been sleeping in until 8am every day!
Christmas was a lot of fun. . .for Evelyn. . .not Jackson.
We learned Christmas Eve, and then Christmas morning, that Jackson does not like the sound of ripping wrapping paper. He screams in a manner that says, 'ouch. that scares me!'. When we were packing boxes for our move back in June, Jackson would scream at the sound of packing tape pulling off of the roll. He's so sensitive. Other sounds that bother Jack: sirens, vacuums, coughing, sneezing, microwave door slamming. But. . .he doesn't cry when the dogs bark!

The kids were blessed over the holidays. They were both sick with bad colds all week, but are showing improvements. Jackson has been asking for baths! This morning he learned how fun it is to slap the water and watch it splash. I caught it on tape! Hopefully, I can get it on the computer so I can share the short video! So funny!

I make grammatical errors too!

Phew. My heart is just starting to slow down.
Jason and I had our training this morning for Jack's growth hormone injections. A home health nurse came over from Champaign, IL and walked us through our first injection.
I was very nervous while holding the pen with the hormone in it. Jack did great. He didn't like the alcohol swab on his thigh (cold) and was very mad when Jason held him still.
Maybe I'll let Jason give the injection tomorrow.

Here's a link to the website and a picture of the pen.
nutropin

home

If you didn't know by now, and I'm sorry for the missing updates, Jack is home. He came home Sunday around lunch. He was VERY happy to be home. Saturday night when his grandparents left the hospital room, he pointed to the door and screamed because he wanted to go too! Jack played in the floor for a long time yesterday. He tolerated his feeds too. He took a 3 hour nap. I put him to bed around 7 because he asked to be, but then was awake until 11pm. At first, Jackson played in his crib. Then, he screamed and screamed and screamed a pitiful, angry scream I don't think I've ever heard. I would hold him for a moment to calm him down, and then he's point to the door of his room and sign 'play'. I had a long talk with Jack around 11pm. When I put him back to bed he didn't fuss! (OUR LITTLE JACK KNEW EXACTLY WHAT I WAS SAYING).
Jack came home to the stomach flu. Jason and Evelyn both have it. They have it bad! I was only sick for around 24-30 hours. They are doing much worse.Evelyn has had a terribly high fever. It's gone today but she's still having stomach cramps and isn't eating.
We were supposed to get the Growth Hormone Therapy training at home this morning, but I called and rescheduled. Wednesday morning is the day.
This house will be health for Santa.

happy jack

I have an amazing husband. Last night, Jason, Evelyn, and I went out for Mexican, while grandma B and grandpa S stayed with Jackson. I had a margarita. yum. Then, Evelyn went to grandma and grandpa's for the night, Jason stayed with Jack in the hospital, and I went home to the dogs. I got to sit in bed watching an old Judy Garland movie, "In the Good Old Summertime", while sipping on hot tea.
Jason said that Jack had a difficult night. Jack was awake a lot, fussing, wanted to be held. This morning he's doing well again. On Neocate Jr. No Peptamen Jr mixed in. Still at the slow rate of 35ml/hr. If we want him to get somewhat close to his daily needed caloric intake, we need to get to 45ml/hr. That would take 23 hours of feeds, and breaks are a necessity. So he'd be missing about 100ml per day, but it would be close enough for me to feel comfortable at home.
Here's a video from this morning. Happy Jack! ! !

Is it because no Peptamen Jr, which means no milk protein? Or is it because the infection is going away?

He was. . .

Today was such a pleasant day, up until around 5pm. Jack's color was better. His lips weren't as dry. He's had plenty of wet diapers. He played quietly with some toys. He let me hold him. He giggled a tiny bit, and smiled a little, and signed a little. We got his formula rate up to 40ml/hr. My mom came to the hospital to relieve me and I went home and took a shower and surprised Evelyn at school and we had a date. I took her to lunch at one of her favorite places, Olive Garden. We also did some Kroger shopping. Of course she walked out of the store with a toy.
Then, 5pm came around. My mom just left for Target and then my house, with Evelyn. Jason was in the hospital room with me and I was trying to rest a small bit.
Jack vomited a TON. He lost everything in his stomach.
Then, around 7pm he vomited again. And this is after we stopped the formula after the first upchuck.
He is going on pedialyte at 10pm with his Prevacid and then to formula 2 hours later. I'm going to sleep soon in hopes that I'll get a ton of sleep and I won't be woken up with a sick Jackson.was

catching a break

I have a lot of people on facebook that say, "you can't seem to catch a break." This sentence doesn't even phase me. This is my life. God gave me Jackson.
However, I think that God is either testing me, or was on a coffee break, last night.
I came down with the flu Tuesday night. I had the pleasure of watching Evelyn at gymnastics and then went home to pack a few items. I returned to the hospital Tuesday night, feeling nauseated. I sent Jason home to get prepared for his school day. Well, I ended up getting sick to my stomach that night and didn't rest well overnight. I had aches and pains and chills.
The morning wasn't any more fun. I requested to be moved to a regular room, one that was bigger than a little cracker box. The nurses allowed it.
My mom came to the hospital after she dropped Evelyn off at school. I went home and took a nap for 2 hours, took a shower, and brought back Subway. I am currently living on a regimen Tylenol and Motrin.
Jackson is obviously still in the hospital. We are still in Decatur, and I think we will be until we go home. It's a nice change. As of 11am, Jackson was still dehydrated. We have him on formula now with the IV on maintenance. The formula rate is very slow but Jackson is tolerating it. He has petrolium jelly on his lips, and I apply about every 2 hours. Jack's lips are cracked and bleeding, his chin is dry like sandpaper, and his undereyes are too!
This afternoon has been uneventful but much needed. I have been able to doze in a regular bed (thanks to the room change-no more fold out chair). Jack is still just laying around. He watched SpongeBob and is now dozing again. My mom is at home with Evelyn and Jason is conducting his Holiday Concerts.
I will be requesting more lab work in the morning to check Jack's levels. I need to make sure he isn't still dehydrated. I'm not quite sure that the doctors care much about that other than getting Jackson back on his feeds.
Time to order some dinner. Then off to bed, again.
Take care and thanks for sticking with me.
Oh, and say a prayer for little Colton (CFC). He has been in and out of the PICU several times over the past 5 months and is back again with static seizures.

mother-in-law wing

It's 1:23pm on Tuesday, December 14th. I am sitting with Jackson in a darkened room at Decatur Memorial Hospital, 3rd floor pediatrics. Jackson has been admitted.
Monday morning wasn't any better than Sunday night. Jackson visited his pediatrician in the morning and then Jason and I took Jack to outpatient ambulatory for IV fluids, and zofran (anti-nausea) and rosephen (antibiotic) through the IV. The IV bolus worked ok but didn't solve all of the problems. Jackson did get some color in his skin but continued to have a fever. Monday night wasn't any better. I tried to give Jackson medication through his g-tube but he vomited it up each time. (thanks grandma barb for picking evelyn up from school and for staying at the house so jason and i could get some sleep). I kept Jack off of all fluids over night because he continued to vomit. I wanted to rest and I know that he did to. Unfortunately, this led to more dehydration. I started the feeding pump this morning with new pedialyte at a very slow rate of 10ml/hr. He kept that in. I was also able to give Jackson some of his medications. We visited the pediatrician again this morning (evelyn is at school for the entire day, thank you St. Paul's) and she had Jackson admitted to Decatur Memorial Hospital because of dehydration. We are in a room and Jack is resting, hooked up to another IV, with fluids and glucose. His glucose is low again, more severe dehydration. There's talk of a possible transfer to St. Louis, but only if needed. If he can get all necessary care here, he will stay. It is very nice to know that I am so close to home. (thanks grandma star, who is on the road as i type this, coming down to help, once again. we need to build a mother-in-law wing).

it's happening again

It's after 4:30am. I've been awake since 12:30am. Jack fussed in his bed from 12:30-2:30 and then started to vomit. I turned off his formula around 2am in case that was what was bothering him. I increased his formula with a bit more new to old ratio. He was getting 720 old:100 new then 720 old:250 new and tonight I did 600 old:250 new. I should have done 600 old-400 new but now I'm glad I didn't. He has been rubbing his nose very hard and fussing about every 10-15 minutes and then he vomits. He's now vomiting up only mucus and stomach acid, when he isn't retching. I am going to try to get some sleep but I don't see how. Every time I start to doze off Jack starts to fuss then vomit. I've also been doing laundry overnight to keep up with the burp cloths.
I am praying that Jason has a snow day tomorrow. He was up with me from 2:30-3:30am. I told him to go back to sleep. I'll be calling GI first thing in the morning, 8:30am, if I can keep Jack away from the local ER until then. I haven't even been able to do pedialyte. We're getting close to needing fluids. . .again. . .

It's the Little Things

Every now and then, Jackson will do something that is such a surprise, such an awesome achievement, I just want to scream out the door and tell the world. Of course, for those who have a 'normal' child, you would look at me like I'm crazy. But, I know that those who know Jack, or have a child like Jack, you understand.

Jack pushes his arms through the sleeves of a shirt. He also pulls them out.
Jack likes to untie his shoelace.
Jack pulled his sock off one day.
Jack was playing with his shoes while they were on the floor next to him, and was sitting them on top of his feet and sticking the shoelace in his AFO.
Jack was in the van, on the way back from St. Louis Children's, and was kicking the DVD player (the type that hangs in between the seats). I turned my head and said, "Jackson, are you kicking the DVD player?" Jack looked at me, smiled and giggled, and kicked the DVD player again.
Last night, Jack was in his bed. It was almost 9pm. He was playing with his fish aquarium by kicking it, and playing with one of his  floor toys, that I gave him to keep him happy for a while. Keep in mind, I gave him the toy around 8pm. I came in his room and said, "Jackson, you should be sleeping. No more playing with your toys." Jack looked at me with a face that said, "Oh! You caught me!" I took his toy away and he rolled over and played with his pacifier wubbanub.

He's such a big boy. I have moments when I forget that he's going to be 2. Then, I see a child 18m-24m and see how they are acting, and it's like, Oh, that's like what Jack does sometimes! He was sleeping in his bed this morning and looked so big! Unbelievable.

We're giving Jackson 1/4 new formula mixed with 3/4 old formula until Tuesday. So far so good!

Oh, and we were blessed with a gift via UPS yesterday. Two wonderful gift cards, from whom we do not know. No clues.
Whom ever it was, if someone that reads this blog,
Thank You.

and the winner is:

I apologize for not writing last night after the MRI. Time got away from me, and I was in bed by 9pm.
That's right! I was in bed. My bed! Jack was in his bed! Yippee!!!!!
I was so worried about going home because of the terrible, terrible first year of sedations, but Jackson did very well. He recovered fine from the sedation. No fever. No vomiting. He was able to tolerate Pedialyte every hour until we got home, and kept down his formula, the old one. Actually, I called GI this afternoon because I still haven't heard anything about the formula switch. I left a LONG message with the receptionist. No returned call, but I did call late in the day. I did have to give  Jackson a suppository. Poor baby. It had been 4 days. It helped greatly. I felt sorry for Jack. He was crying and crying and crying and crying and crying. . .you get the picture.
Ok, right . . .the results of the MRI. Jack still has extra fluid, or possibly a small arachnoid cyst at the posterior fossa of the cisterna magna. I'm not even going to try to explain this one to you. The doctor isn't sure if it's just too much fluid or if there is a small cyst, but he isn't worried. There isn't any pressure on Jack's brain stem, where this is located. It isn't causing any problems, and the doctor doesn't want to find out (I don't want him cutting into Jack's head either!).The other term you will learn is Corpus Callosum. Jack's Corpus Callosum is thin in one part, much more than it should be. However, it is in tact, which is VERY important. The doctor also said that he didn't like that. I learned from the neurosurgeon that the Corpus Callosum is the transporter of information of the left and right brain. It's how the left and right brain talk to each other. I did a small amount of research on this and learned that it could be one of the reasons why Jackson is delayed in many areas, and hypersensitive, and has trouble eating, etc. etc. etc. I wonder if other kids with CFC Syndrome have an abnormal Corpus Callosum.
No hydrocephalus (water on the brain). No pressure anywhere in the brain.
Feel free to research. If you learn anything let me know. . .

is an experiment really worth the possible consequences?

So, I ended up calling the GI on-call Monday evening because Jackson has now projectile vomited 5 times since he started the new formula, Peptamen Jr., Sunday morning.
I was instructed to put Jackson back on Neocate Jr for the remainder of the evening, and also give Pedialyte, instead of water or apple juice, for the clear liquids from 2:45-6:45am.
The Dr. I spoke with last night, who happens to be one of the Drs we saw last Wednesday, remembered out visit! That makes me happy. She was going to email the attending with the problems Jack was having since the formula switch. I am supposed to keep Jackson on the Neocate Jr until I hear from GI. Ugh. The on-call Dr said that there's a possibility that Jackson's pancreas isn't used to working with a thick formula, or proteins, because he's been on all enzymes for such a long time. I asked her about the possibility of a milk protein intolerance, because the new formula is mainly Whey, a protein in cow's milk, and she said that chance was small because Jackson isn't a baby any more. We'll have to see about that.
I'm sitting in a waiting area right now, outside of the gift shop, while Jackson is in his MRI. The trip to St. Louis was uneventful this morning. Jackson cried, of course, when we entered the imaging holding room. He was fussy until the nurse gave him some drugs via the g-tube to calm him before the IV placement. THIS DRUG ROCKS! I told the nurses that I wanted some for home. Jack was all calm and loopy, enjoying the allergy bracelet he took off of his wrist, making some very silly sounds. The IV blew a vein the first time but the second attempt went right in. Jack barely fussed during either attempt. He wiggled a bit at each needle insertion but was a completely different child. Here's a picture of Jackson right before he went back to MRI.

I am praying that the anesthetics don't cause any problems and I can bring Jackson home later today. There is a bag in the van but I don't plan on getting it.
Cross your fingers.

the formula experiment

The formulas of the past:
enfamil enfacare (2 days)
breast milk (4 weeks)
similac advanced (2 days)
similac soy isomil (2 days)
similac alimentum (4 weeks)
enfamil gentlease ( 4 weeks)
enfamil enfacare (12 weeks)
neocate infant (16 weeks)
neocare junior (9 months)
peptamen jr ( ? )

We started Jackson on his new formula Sunday morning. We've had two projectile vomits, and one spit-up. The formula is ready-to-feed, which is nice because I don't have to mix it, but it does take up a lot more room. We've gone from 17 14oz cans to 135 8.45oz cans per month.
I'm hoping that Jack can tolerate this formula well. I've been a slight bit concerned because the new formula has whey, a protein found in cow's milk. We don't know if Jack is allergic or sensitive to cow's milk because he hasn't had any for a VERY long time. I'm praying that the formula will help Jack's poopy problems and he will be able to digest it fine.

Tuesday morning I leave around 6:15am for St. Louis Children's. Jack has an MRI in the morning and an appointment after lunch to go over the results. Hopefully the results are the same as last year and we won't be in need of a shunt.

a short clip from snack at school

 

What you are watching is a short clip that one of the Developmental Therapists took during snack today. It's small because it was taken with an iphone, but WHO CARES! Such a cute slip! According to the teachers, Jack had a great day! He transitioned well, sat in that rifton chair most of the time, and had a good time with the hand drum. (I had to stay with him for an hour before finally separating, but once I did, I knew he was going to be fine. Jack wanted lots of cuddles.)

Here's a picture of Jack from this morning with the drum. I left VERY soon after this pic!

Oh my goodness, Jack will be 2 years old in one month!

One of three trips to The Arch

I took Jackson to St. Louis Children's Hospital today for GI clinic. We had a productive appointment! Jack's formula is being switched. We're going to a formula that isn't broken down as much, hoping that the poopy problems will be resolved. Jackson also had labs drawn (which took 3 tries!-the first two veins were blown).  His labs are testing electrolytes, phosphates, vitamins K, D, and E, and he's also being tested for Celiac disease. The doctors want to rule that out.

Here's the wonderful news: Jackson was a pleasure during the appointment. He was smiling, playing, talking to the Dr., and he even let her (a new GI) hold him! And. . .he even rested his head on her shoulder.
What else. . .oh. . .I've got this new phone, the Droid X, and Jackson has been playing with the kid's applications! He has a lot of fun touching the screen and playing peek-a-boo. I've even put a new application that is a communication device. The program works with pictures. A picture of a ball is tapped, and then you hear, "I want to play with a ball."
So COOL!!!!!!!

OMG OMG OMG OMG

Happy three-days-after-Thanksgiving!
Our family traveled up to my home town for Thanksgiving and some family time. Jack did exceptionally well! Evelyn, well. . .she was herself!
Why I'm writing?
JACK IS SITTING UP RIGHT NOW, PLAYING WITH HIS TOYS, AND TURNING HIS BODY IN CIRCLES TO GET TO DIFFERENT TOYS!!!!!!!!!! Is bottom scooting next?

disturbed and progress

I had the most horrible dream Saturday night. It was so horrible, I don't even want to repeat it, but it keeps poking at me, over and over. To share it, without going into details: Jackson's body was left behind and his soul went up to Heaven, but I couldn't get anyone to believe me, and I couldn't get anyone to collect Jackson's body so we could hold a proper funeral. I tried 911, direct ambulance lines, funeral homes. . .  His body just stayed in his carseat in the van. Eyes closed, body lifeless. 4 days passed and nobody would listen to me. I woke up many times during this dream, but it continue throughout the night. I even recall traveling very far to meet with someone who could help me. . .no luck. In the end, I can't seem to forget this dream. It's been digging at me since Sunday morning.
I found out that two CFC children (one 1yr, one 23yrs) are both in the PICU (one recently released) for respiratory illnesses.

On a positive note: This morning I was holding Jackson in my arms in the bathroom, getting ready to brush his teeth. He grabbed the toothbrush and helped me, several times! Jackson was putting the toothbrush in and out of his mouth! He also saw the Pediatrician and did AMAZING. He didn't fuss much and even helped!

Oh, and Jack loves SpongeBob so much! It's so funny! He sees Bob in a store and says, "Bob. Bah. Ma Bob."

Applebee's CFC Fundraiser pic

Finally!

This is Shyanna, a 4 year old with CFC! What a little angel. That's her grandma, Tina. I look horrible in this picture. VERY BAD ANGLE.

kids are just honest, but still. . .

I took the kids to Lutheran Schools Association (LSA) where Evelyn will be attending Kindergarten in the fall. We met the principal and took a tour of the school.

While peeking in one of the Kindergarten classrooms, one of the little boys said, "He has funny eyes."
I should be used to something like this by now, but it made me feel sad. It saddens me that Jack may not be able to attend the same school as his sister, which isn't fair to her. She'll always be separated from him. I truly believe that he will be in a wonderful school system, that will suit his needs, but still. . .you know what I'm saying?

Oh, and Jack had another hard day at school. Found out that he did have some 'moments' when he was pleasant. He also had a lot of fussing. I guess the teachers even turned down the lights to see if it would calm Jack, and it did, to a degree.

Wow! It's only Wednesday night and I am so ready for the weekend! Jackson has been having a VERY difficult week.
Let me backtrack to Saturday morning. I've been waiting for pictures of the event, but. . .I'm. . .still. . .waiting. . .still. . .dum dum dum dum. . .
On Saturday morning, Jason, Evelyn, Jackson, Grandma Barb, Grandpa Steve, and I went to a local fundraiser, in Springfield, for a 4 year old girl with CFC! The flapjack fundraiser was at Applebee's. Oh, and Quinton, Jason's cousin, stopped by as well. Shyanna is a wonderful little 4 year old. She has been placed at the 15 month level, developmental wise. She is a good size, almost the same size as Evelyn, but the differences are obvious when looking at how she acts. We had to keep pulling away items on the table, and taking Shyanna's hands off of Jack's hands (she kept clapping his hands) and Evelyn's hair (she kept petting her hair). Shyanna was lovely and I can't wait to meet her again. It was beautiful to see how well Shyanna was doing. I've now seen CFC kids that are severe and CFC kids that are mild. If only God could give me a hint at Jackson's future.

Back to the rest of the week. Jack had a bad Sunday morning and night (lots of fussing, screaming, crying), a bad Monday morning (we visited the Nutritionist after lunch and that went fine) and night (lots of screaming), a bad Tuesday morning (lots of fussing, screaming, and crying), a bad day at school (he fussed or screaming, didn't tolerate transitions, didn't participate will with the therapies), a bad Tuesday night (lots of screaming). . .this morning was fine until I took Jack to the Cardiologist and we entered the exam room. Jack started to fuss and then cried when the nurse came in to do vitals. Then, of course a lady came in to do an EKG, which was a tragic event, according to Jack. He was screaming and kicking, and it took three people to hold him down!, and then the doctor came in, which also made Jack cry. Oh my gosh. I feel like such a. . .well. . .Jack screams or cries, and after I've attempted all possibilities, if he's still crying, I usually just hold him or let him sit/lay and scream and ignore it...but to nurses, doctors, therapists. . .it's like I get this look. . .as if they are saying to me, "aren't you going to help him? can't you make this stop?"
Sometimes I get the feeling that Jack is a burden to the teachers and students, because he fusses so much, and doesn't move around on the floor, and seems to really need a lot of attention. . .

a 'first'

 

I took the kids to a park today and Jack actually had fun! He enjoyed watching the kids run around and laughed at them. 

CHECK OUT THAT PICTURE!

WOOHOOOOOOOOOOOOOOOOOOOO!

TOTALLY A FIRST!

the 'art of stacking'

Jackson is learning the 'art of stacking' by practicing with Cheez-its! He also put some to his tongue to taste the cheese!

hubba-bubba

hubby- bubby is great. I've discovered that I don't thank him for everything he does. For example: Saturday morning, and Sunday morning, the hubbs got up with Jack. BOY OH BOY was Jack mad that mom wasn't getting him out of bed. The hubby also gave Jack a bath. Jack was peeved!
Anywho. . .thanks!
and. . .Jack went to school this morning. He was fine until we walked into the classroom. The screaming started and didn't stop until the Occupational Therapist carried Jack out of the classroom to 'work'. I left and didn't come back until after I picked Evelyn up from school!!!!
I ran my errands and still had an hour to spare! That was nice!
According to the teachers, Jack did very well. He fussed here and there, and of course got mad when his hand was painted to print out a turkey! He also fussed during snack time when strawberry yogurt was placed on his mouth! Other than that, he worked hard for occupational therapy, developmental therapy, and speech therapy, and truly enjoyed circle time!

home sweet home

I apologize for not posting sooner. Life has been 'interesting'. Jack was discharged from St. Louis Children's Thursday afternoon. We got home around 7pm. He didn't vomit the entire ride home, but didn't sleep either. Jack watched SpongeBob Squarepants the entire ride. Thursday night, once home, was stressful for me. My mom was still here and was a wonderful help. She helped care for Evelyn, Jason, and the house. She stayed all week while I was away at the hospital and kept Evelyn on schedule. She also stayed until Friday afternoon so I could take Evelyn on her fieldtrip. Grandma hung out with Jackson. He didn't vomit!
Everything at home is sort of back on schedule. Jack didn't take a nap Friday or Saturday, even though he was placed in bed! He also hasn't slept very well. Saturday night was very difficult. He kept crying, hysterical, with his eyes closed. I would vent his belly and change his diaper, but he would just continue to cry. We took him out around town Saturday. Jack did very well. Not too fussy. No vomit. He did look sickly, but I think he enjoyed being away.
Jack has been scooting himself around on the floor and playing up a storm. No vomit.
Evelyn has a nasty cough now, but it seems to only happen in the middle of the night, which also keeps me up.
Thanks to everyone for all of the help and support and Jack has not been vomiting!

should have brought my boots

I should have brought my new, hip boots that I purchased about a month ago. Not because it's getting deep in here, but because I need them to give me the strength I need to get things taken care of, the right way, for Jackson.
Jack had a very good day on Wednesday, except for the little fact that he isn't getting close to his required caloric intake per his nutritionist. He sat with me on the bench and played with blocks and read books. Jack even threw his toys and pacifiers and was delighted every time he made a lovely pile on the hospital room floor . He was making sounds and sort-of talking to the television. However, the House Physician, and GI Fellow wanted to send Jack home. I couldn't believe it! I actually lost all control and, from exhaustion and stress, cried terribly while speaking with the two House Physicians. 
It all started when the Social Worker came in to help me find lodging overnight so Jack could make his clinic appointments today! I was like, "Jack's getting discharged? He isn't ready. And I'm not staying overnight in town to make clinic appointments when Jack is so sick. He's been vomiting again. I'll just reschedule! He isn't ready to go home." This is what led to two House Physicians coming into my room, one being very blunt and partially harsh, telling me that Jack will 'spit up' because his mucus is causing his gag reflex to trigger and he isn't truly vomiting. That I should 'expect' him to continue to 'spit-up' for a while more and he can't stay until he's completely healthy. I, of course, while trying to choke back tears of stress and utter frustration, am trying to explain that Jack is special needs, he isn't getting even close to the calories he needs, he's losing some with each vomit, he's obviously having some sort of problem, he isn't spitting-up but actually vomiting, his stomach isn't ready for home, he's been failure to thrive since birth, he needs to be getting close to his caloric intake so I know he'll be on the mend, etc. etc. etc. and they finally said, we'll have the GI Fellow come in and talk to you. I, of course, am so frustrated with the GI Fellow by now, because he doesn't seem to know and understand Jack's history, and keeps shooting out numbers to me ("yah, you're a Dr., now start maturing!"), only want the GI Attending. Thank God, He heard my cries. The GI Attending came in and we had a talk for about 30 minutes.

The GI Attending, who is a colleague of Jack's GI, Dr. Weymann, can clearly see that Jack isn't ready to go home yet. The rate was slowed down (the House Physicians wanted to put Jack up to his normal rate and 'see how he did over the next couple of hours'), an antibiotic was prescribed in case Jack had a sinus infection, and an understanding that "Jack will let us know when he's ready" came out of her mouth. There is also still concern for pneumonia. This Dr. understood Jack's history, that his gut moves slow, he can't handle losing formula too often becuase he'll start to suffer. . .No nausea medication should be given. It may constipate Jack. We DO NOT want that. Continue the feeds even if he vomits.

Fast forward to 11:00pm. Jack has been fussy for about an hour. The Tech is taking his vitals. He is fussing and crying. Next thing we know, Jack vomits a large projectile vomit. I am pleased that someone saw it. It was, indeed, a vomit. A nurse informs me that I am to 'catch' it in a basin next time so it can be measured and the consistency can be seen.

Fast forward to two more instances in the middle of the night. I catch vomit both times and I feel myself hopping up and down with my arms high above my head, so proud of my accomplishment. Both times, Jack was fussing for about an hour, as if his belly was bothering him. 1st time, about an ounce. 2nd time, about an ounce. No mucus. Only formula and very thin.

Fast forward to Thursday morning. Jack wakes up, fussing around 7:30am. "Oh, Jack. Thank you for letting me sleep for 3 hours!" He's moaning and eventually starts to cry. I end up holding him on my lap again. This time, however, he rests his head on my shoulder and cuddles. "Bad sign, Jack doesn't feel well again." I'm sure to tell the House Physician when she comes in (who in turn tells me, "Jack is getting around 66 kilocalories/kilogram, so he's doing very well," and then I'm like, "but that's only half of what he should be getting, which is around 120 kilocalories/kilogram," and she's like, "he should only be getting 80-85 kilocalories/kilogram, 0ver 100 would be for catch-up for a newborn, and I'm like, "his Nutritionist has him on a very strict diet to promote continued growth," and she's like, "oh, his Nutritionist." I ended up laying Jack back in his bed because he was so fussy, and was coughing while I was holding the basin, hoping to make a 'catch'!. Well. . .shortly after, Jack started to blow! I missed the first portion but caught most of the rest. Again, about an ounce. This includes all of his morning meds he was given 20 minutes before.

Jack is now laying in bed, dosing, or just staring off into space, as I await the GI Attending

status update

Sorry I haven't written an update. Time got away from me on Tuesday. Wow! It's Wednesday. On Tuesday I kept thinking that it was Monday!
Today Jackson is 22 months old! Where has time gone?
Most recently, time has been spent in the hospital.
All of Jackson's tests have come back negative. I don't remember if I shared that with you before. I think I did, but I truly don't remember.
Jack has a NASTY cold. Some sort of NASTY virus that it making him all yucky and such. He had a hard day on Tuesday. Lots of fussing. He didn't want me to hold him. He just wanted to lay around in his little bed and watch television or play with the eyes on his wubbanub pacifier froggy. There was one point Tuesday evening when Jack was feeling pretty good. He wanted me to hold him! He sat on my lap on the hospital bench and we read some soft books. He was turning the pages and pointing to the pictures. Then, of course, he started to cough and almost vomited. We vented that belly quickly and took a break from the feeds.
Oh, and I got some respite! A student nurse, Jeff, sat with Jack and I left the hospital. I went out to Walmart and Target and grabbed a small bite at Starbucks.
Tuesday night was bad. Jack was fussy, irritable, and did NOT sleep well. He fussed a lot. This morning I was holding Jack because he was irritable and wanted me. . .and. . .he. . .coughed. . and. . .vomited. His nose has been suctioned. He's been given Mirilax. He finally passed some barium. He is now resting in bed.
I don't' know if we are going home today or tomorrow. I'm in no rush but I do know that I want Jack back to his rate so we know he can tolerate it, and have him acting closer to himself than not.
Time will tell.
I'm bored.

we turned the wrong way

Jack had been doing so well. He had been doing well. He is not doing as well now.

It all started Saturday night. Jack was having a great day. He was having a great night. Then, around 11pm, he started to vomit about every 20 minutes. This continued for 14 hours. We tried turning off his formula, checked his temperature, offered him cuddles, tried some Pedialyte once the bile stopped coming out. Yes, true bile.
I ended up taking Jack into the local ER. Luckily, I had talked with the pediatrician-on-call from Jack's pediatrician's office. She called the ER ahead of time and filled them in on what was going on. We were taken directly back to a room (Oh... me, grandma Barb, and of course Jackson). Jack had blood drawn, which of course was a difficult task (suck a difficult and unfair task). He was poked 4 times for an IV. Three of those veins were blown. We were supposed to get an abdominal x-ray, but the Doctor who took are of us spoke with GI at St. Louis Children's and they wanted Jack with them.

This led to Jack and my first ambulance ride. Not as exciting as one would think, but they did drive very fast! We made it to Children's in what seemed like good time. I had fun watching all of the truck drivers through the back window. They were all talking on cell phones, ear pieces, and one guy was singing up a storm! Jack was on my lap and I was sitting on the bed. He pretty much slept the entire ride, only fussing here and there.

We made it to the ER and Jack was taken directly to a room. The Director of Emergency Medicine was helping take care of Jack. Slightly impressive with that, but also slightly concerned. Was Jack a worrisome case? Why such attention? He was given new lines for his IV, taken back for an immediate abdominal xray, his blood sugar was tested, and his urine was taken by cath. My mother and father-in-law were wonderful and drove down their car and my van with a suitcase. They met me in the ER. We all ate some hospital food for dinner. Thanks for bringing the van guys! And especially for the suitcase! They hung out for a short while and then headed home. Jack was transferred to a room within what seemed like a short amount of time.

We're in our own room, possibly because Jack was not very happy when we were placed with a neighbor. He even woke up the little boy and the boy was like, "will he stop crying soon?". Within 5 minutes on entering that room Jack was quickly moved to his own. We have a nice big space with a comfy sofa bench that I hang out and sleep on. His night went pretty well. He fussed when a nurse came in for vitals or when he rolled. This, of course, woke me up, but I feel rested.

This morning has been very eventful. I met the GI resident and GI attending. Very nice and informative. Jack has already had labs draw, a chest xray, and an upper GI. We're looking at pneumonia (negative), UTI (negative), sign of infection (negative), dehydration (very but given lots of fluids and some bolus through IV), intestinal blockage (waiting for results), possible parasite, possible kidney issue (will be tested if everything else comes back negative).

I'll be sure, at least to try, to keep everyone informed of the results.

2nd day, way not the same as the first!

9am. I take Jack into his classroom for his 2nd day of school. I must backtrack to Wednesday. Jack had a hard Wednesday. He vomited and coughed and gagged a ton. More and more snot! He had a horrible night as well. I lost count of how many times I was awake with Jack. He fussed and cried most of the night! Really, he also had a hard Thursday, and that doesn't even include school. He vomited and coughed and gagged a ton. And, he's been screaming in his bed, on and off, for 45 minutes! He sounds pitiful.

Ok. back to the 2nd day of school.

9am. I take Jack into his classroom. We walk through the door and right away Jack does his 'fuss/moan' to let me know that he isn't happy. There is a little boy and a Developmental Therapist working by the floor-level mirror. I take off his jacket and hang it up on a little hook (so cute). I sign Jack in and then sit him on the mat so he can 'chill'. Nope! Jack didn't want to chill. Jack wanted to cry. The DT picked Jack up and said 'Hello Jackson Waddell!" She took Jack over to some toys and picked one out for him. They sat on the floor, directly in front of me, and played. Jack fussed, cried, fussed, cried. He eventually calmed and played. A short while later the other Developmental Therapist came in with some more kids. They all took off their jackets and quickly sat on the floor and played. (I originally planned on leaving around 10am to have an hour-and-a-half of me time, but with Jack's fussiness and gagging, I needed to stay. The teachers appreciated that!).
Fast forward to 10:30am. Jack had fussed and played fairly well. The DT put Jack on his belly. He didn't do anything but scream and eventually flipped himself over.I ended up trying to hold Jack to calm him. Didn't really work. I opened up his 'emergency kit' and vented his belly. A TON of air came out! One would think that helped. Oh, did I tell you that there were 9 or 10 kids total today, and a couple of them were also fussy! It was loud and busy! The teachers decided that 'snack time' should come before 'circle time' because the kids were so fussy. Ha! This, I figured, was going to be a bad idea. I took Jack over to the Rifton chair, sat him down and strapped him in. He screamed a lot. I placed a t-shirt over his shirt. He screamed. The teacher placed some apple sauce on the table. I put Jack's hands in it. He screamed and put his apple sauce-covered hands in his hair. He then started to scream so hard that his tongue was sticking out, his eyes were rolling back and he was turning red. I cleaned Jack up, and took him out of the Rifton chair. It was time for Speech Therapy, anyways! Usually, speech therapy occurs in the classroom, but this was Jack's first time and the ST wanted Jack to focus. The Speech Therapist took Jack out of my arms and we left the classroom. As soon as we were in the hallway, Jack calmed down. He didn't even mind having someone else hold him.
Do you remember when Jack only wanted me?
Anyways, we were out of the classroom for a good 30 minutes. Jack did wonderful. The room we were in was nice and quiet. Jack played with toys and worked with the ST. He just needed some quiet time. He was overstimulated.
We all know, by now, that Jack doesn't do too well in busy, loud situations.
After speech therapy, Jack did the art project (his hand was painted with orange, white, and yellow paint and pressed on paper to make candy corn) and NO, he didn't like that. I left to pick Evelyn up from school and Jack was taken by the teachers.
When Evelyn and I returned, the class was having 'circle time'. Jack was in the Tumble Form and he was playing the drum! The kids sang songs and listened to books. They also pointed to pictures in the books. Jack was REALLY into this!

There he is! The teachers were talking about getting the Rifton Corner Chair back for Jack to sit in. The Tumble Form is really hot for Jack, and he doesn't need that much support, but the Rifton Chairs are too deep and the backs aren't tall enough (I wonder if the backs can be moved forward).
Here's the Rifton Corner floor sitter.

first day of school

9am-Jack's first day of school at the STEPS program. I take him in and we meet one of the Developmental Therapists. A mat is placed on the floor and Jack is sat down. He's given a toy. The DT plays with Jack. He's already having fun. From 9am-almost 10:30am Jack plays with two different DTs, a Millikin student, and other kids. This is the time when the kids receive Physical Therapy, Occupational Therapy, or Speech Therapy. At one point he gets angry because he's been sitting up for more than an hour and just wants to 'lay and play'. Nope. not here. He's there to work! Circle time begins. Jack is sat in a Tumble Form chair.

He gets very mad. The other 4 kids are sitting in Rifton chairs.
The class went around, finding their picture and putting it on a wall.
Each child was given a drum and mallet and the class sang a song about the child and then about the drum. Jack didn't have a picture yet but the song was still sung and he was given the drum. Boy oh boy did Jack like the drum. He tapped it during the song and I got all teary eyed. He got to play with the drum the rest of circle time because it kept him from fussing! That's our little musician!

Snack time came next. Snack time is meant for therapy purposes as well. Each child got a white T-shirt to keep his/her clothes clean. Jack too! This time Jack sat in the Rifton chair at a table with the other kids. The kids ate a bowl of banana pudding with chopped banana and had a sippy with chocolate milk. Jack was given some pudding on the table and his hands were smushed all around in it. He didn't like that. He did, however, put his fingers in his mouth (probably because he's teething) and quickly discovered that the pudding had a taste. He did it again. The DT also placed some pudding on Jack's lips. Jack even asked for 'more' by signing. The kids were also given some cheese puffs. Jack too! He didn't touch them. He did try to throw them on the floor.

I had to leave to pick Evelyn up from school, but when I returned, Jack was still at the table, this time with his hands in a mix of shaving cream and paint. He didn't like this either, but hey!, it's a sensory experience! Mr. hypersensitive wasn't given a choice!

Once the kids were cleaned up they went to the gross motor room. Jack was so tuckered out by then. Evelyn played around in the room and Jack sat on the floor fussing. He was tired!

Jack's first day went very well. He passed out when we got home and took a 2 hour nap. And, he slept through the night! Can't wait until Thursday!

"I want that mom"

Jackson seems to be getting better. He's been taking a special anti-nausea medication, Zofran, since Wednesday night. We had success until this evening. He vomited in the car. Darn.

The Endocrinologist called me today. The Endocrinology team discussed Jackson during their weekly rounds and decided that, instead of taking the Growth Hormone Stimulation test, they would go ahead and do a trial to see if it may help Jackson grow, and also build his strength! This won't start for a while, but I'm thinking that we'll be starting the nightly injections within the next month.

Jackson pointed to some baby toys at a store and said, "uh" and signed "want". So cute!

I took the kids to church this morning. I tried to take Jason as well, but as we were pulling out of the driveway, the new garage door opener wouldn't close the door. Jason stayed back and battle with the sensors, and I took the kids to church. And. . .Jack only cried one time. He sat in his KidKart and played with his toys, tossed his toys, read his books, and even danced to the music (rocked his head from side to side). He also clapped at the end of service after the closing song! So funny.

And, I have learned a very important rule today. DO NOT sit a child with sensory processing disorder in a pile of fall leaves to attempt to take a picture. BAD IDEA!

I'll keep Jack away from the babies

Well, Jack has been vomiting for 9 days now. I took him to the Dr. today for a follow-up from the ER appointment on Thursday. Jack hasn't gained weight in 2 weeks. Go figure. So sad. Jack hasn't been getting even half of his total volume of formula, and he's been vomiting up part of that, including medications. The part that saddens me is how the pediatrician doesn't know what to give Jack to help him. His lungs are clear. He doesn't have a fever. However, he vomits and vomits and coughs and coughs and gags and gasps for air when coughing. I wouldn't be surprised if he had RSV again, because his lungs were clear those times as well. He was tested for RSV on Thursday and it was negative. Even if it were positive now, I don't think much could be done. I guess I'll just keep Jack away from other babies for now, and pray that the stomach calming medication helps.

On a good note: Jack is starting school next week! I know! He's only 21 months old and he'll be going to school. Jack will be attending the STEPS program here in Decatur. It's a class of children who receive Developmental Therapy and at least one other service. The children are up to age 3. He'll be in school twice a week for 3 hours a class. He'll receive most of his therapies there. The class even has circle time, arts and crafts, gross motor play, and snack time. And. . .everything revolves around some form of developmental therapy.

That is all for now. Jack is fussing again. I guess I'll go check on him. He should be sleeping but with the way he's fussing I'm guessing that his belly hurts and he's going to vomit. . .again.

what a weekend!

Hi there. Did I ever tell you how Jack has had this nasty cold? The one that the rest of the family has had? Well, remember how Jack puked snot all over his physical therapist? Well. . .he vomited a couple times Thursday, a couple times Friday, and 4 times Saturday. Thank God he didn't vomit today. That's because I stopped feeding him bolus (with the syringe and gravity) and put him back on the pump, very slow drip. I actually was advised to take Jack to the ER on Thursday evening because his pediatrician wasn't in and Jack woke up from his nap breathing in all gasping and snotty like. The nurse wanted Jack tested for RSV, influenza, and to get a chest x-ray. Jack also had low-grade fevers from Tuesday on. . .Off to the ER we went. Three hours later we were home. All tests negative and an antibiotic prescribed for Jack's ears. I would go on to complain about the trip to the ER and the quality of care (so not good) but I just am not in the mood to vent. . .Surprising, I know!
The weekend was stressful with a sick Jack, although he wasn't acting sick, which is great! I just couldn't really take him anywhere, except for a quick trip to PetSmart and Target, because I wasn't sure if he was going to vomit again. That also means no church, again. It drives me nuts. I really want to attend church. I just can't seem to get there because of Jack. I'll focus on the coming up weekend. My goal will be to get to church.

Oh, and here's a picture of Jack's new foot-to-floor ride-on toy. We're hoping that Jack will learn to push his feet on the floor to move around. What's so cool about this toy is the safety rails on the sides. The toy didn't come with straps, and I don't even think I'll need them! Jack is able to sit on the toy when we push it with the parent handle, all by himself! I can't allow Jack to move around the house on his back. Just no good. I actually have a video of Jack traveling down the hallway on his back. I have to get it onto my computer and edited first. It will come.
I travel to St. Louis Children's Hospital Monday afternoon with my mom and Evelyn, and of course Jack. We visit the Endocrinologist tomorrow. I'm looking forward to this appointment. This is a new Endo. I'll be bringing those lab results from the Growth Factor I tests, as well as the medical records from the Nutritionist and the past Endocrinologist, and Jack's growth charts from his pediatrician. I'll fill you in once I get the chance.

quiet time

I'm giving myself some quiet time. It's a little before 10am. Jack is playing with his toys. The dogs are sleeping. Evelyn is at school. It's nice and cool outside. I should be cleaning, coloring my horrible gray hair, playing with Jack. . .but instead I'm sitting with the television off, sharing the peace and quiet with you.

Jack had physical therapy yesterday. I didn't cancel because he doesn't have a temperature. Jack does have a NASTY cold, but that's all. . .for now.  So, back to the physical therapy. . .Jack was so peeved! His therapist was holding Jack between her legs, trying to get him to kneel. He wanted nothing to do with that. We got his legs into a standing position since that's what he did a while back. Oh, here's the photo of that!

Well, Jack locked his knees and pulled his entire upper body into a stand! Of course I didn't have the Flip recorder out! We were so excited for him. He was screaming the entire time! Evelyn and I got the Flip out and started recording again, hoping that he would repeat this incredible strength he recently demonstrated. Nope. Just a TON of screaming. Jack's therapist eventually sat Jack on her lap to allow for some 'calm down' time. This is when Jack decided to start coughing from screaming so much, followed by a disgusting 'snot vomit' all over the therapist's leg! Nope. I didn't get that on 'film'.

That is all I have to share. Jack has slept through the night for two nights now. Keep in mind: Jack is being drugged with Zyrtec during the day and Benadryl over night. Gotta be why!

teaching you a new sign

Tonight, I'm going to teach everyone the sign for the way Jack has been acting since Tuesday evening.

Lift your hand to your face and look at your palm. Scrunch your fingers towards your face while making an angry/grumpy face. That's right. Everyone just learned how to say 'grumpy'. Jack has been grumpy since Tuesday night. There have been some nice, pleasant moments, but a lot of fussing, whining, screaming. . .you get the idea. I ended up holding Jack a lot. He played and babbled some, but so much fussing. Probably not as much and I think, but I'm so exhausted just thinking about it. . .
teeth? belly? something else?
He had a very runny nose this morning and has been coughing a lot tonight. However, the coughs sound like the "Uh oh. Jack is about to vomit" coughs.
Blah!

His first Play-Group

Well, it's officially happened.
I've taken Jackson to his first play-group. It was at Baby TALK here in Decatur, IL. We met a friend there and sat with a group of mommies and babies for about 40 minutes. Although the group is for babies birth to one year, I didn't feel too odd with Jack in the class. There were babies as young as 2 months and as old as 13 months. Jack played with the baby toys, interacted with his friend Bella, and smiled when we sang songs and signed with our hands.
It was, overall, a good experience. I did feel the need to run a couple of times, mainly during conversations about sleeping, breastfeeding, and weight. But, I broadened my shoulders and stuck through it, and I'm glad that I did! And I can't wait to take Jack again next week!

Communication

We have a little communicator on our hands!
That's right! Jackson has been communicating with us more and more. He's been pointing to different toys that he wants to play with, as well as the exersaucer! The excitement with the exersaucer? Jack always had trouble with it because he was so weak and tiny. Now. . .he sits in the middle, moves himself in circles, rocks and even bounces at times! What an improvement! Jack even plays with all of the toys. The best part about this new-found communication? Jack asks to play in the exersaucer several times each day!

He hasn't eaten a thing, but that's ok. I've stopped using the feeding pump during the day due to the recent feeding-tube-came-out-three-times-in-five-days event. Jack eats from the pump overnight. During the day, he's been receiving 3 1/2 ounces 4-5 times a day via syringe. It's called bolus feeding. So far, so good. We'll see what the pediatrician says about this new form of eating when we see her Monday morning.

Anything else? I accidentally threw my cell phone in a poopy trash bag, which was tossed into the outside trash can. I found it, Thank God, the next morning. . .

Oh, and Jack had a bath tonight and DIDN'T THROW A FIT.

And, he's been moving himself all over the floor! What a HAM!

He hasn't eaten a thing, but is just doing wonderful!

"Feed the Dino"

So, Jack had Speech Therapy this morning. He did a very good job.
I wanted to share with you, the joy from the session.
Instead of playing "Feed the Baby", we played "Feed the Dinosaur".
Jack was given play plates, bowls, cups, forks, and spoons. With his hand guided, Jack stirred the food in the bowl (or cup) or scooped the food on the plate, fed the dinosaur, or gave the dinosaur a drink.

There was a brief moment when Jack stirred the food with a spoon and then fed the dinosaur, all by himself!!!!!!!!!!!!!!!!

Over the past week, Jack traveled to Springfield once for feeding therapy, and St. Louis Children's twice for clinic appointments. Grandma came along for all of the appointments.
But first, there was a Speech Therapy appointment. It went very well. I loved watching Jack work so well with his therapist. He did so many different concepts-play with toy dishes and utensils, feed the baby, look at pictures, point to pictures, communication via recording device. . .
Pediatric Surgery for the mic-key button coming out 3 times. The button fits great! No need for a change. There's a chance that the buttons were part of the product line that was manufactured wrong. We talked about the GI problems and the Dr. mentioned about slowing down the rate/hr, so I did. We also talked about the possibility of a GJ tube (Gastrostomy Jejunostomy tube-the feeding tube passes through the stomach directly into the intestines). The Dr. said this was not recommended because it might make the some of Jack's problems worse. Good to hear.
Feeding Therapy was unsuccessful. Jack has finally stumped the feeding therapist. She said she would be contacting the feeding team to discuss Jack. I'm supposed to get a call from her with any ideas on what may help Jack gain interest in food once again.
The neurology appointment went very well. Jack's CoQ10 has been doubled. The neuro is thinking that Jack may be having GI, Behavioral, Feeding, and muscle difficulties right now because he needs more CoQ10 in his system. His dose was based on 6kg, and now Jack is 8kg. We're doubling Jack's CoQ10. I'm expecting to see changes within a week. I just started the new dose this morning. The autistic tendencies: The neuro said that he didn't see how Jack could also have Autism. I agree. Jack does some odd things, but he doesn't fit into the category of Autism Spectrum Disorder very well. He has Global Developmental Delay, which we already know. Jack performed some new skills during the evaluation. Yippee.

We had Developmental Therapy this morning. Jack worked hard.
He'll have Speech Therapy again on Friday.
Occupational Therapy was canceled today. I'm sick. I have whatever Jason had. I'm not in the bad stage yet, but it's coming on fast. Jack's pediatrician just called me. She just got back from maternity leave and was concerned about the multiple notes on Jack. She read about the button problems, weight problems, nutritionist problems, odd fears, etc. He'll be getting weighed in a couple of weeks. The pediatrician isn't happy with Jack's recent weight issues. Evelyn has gymnastics tonight and dance tomorrow night. Grandma, Evelyn, Jack, and I went to church Sunday. We didn't stay too long. Jack did his screaming thing again. I wish I could find a way to let him enjoy church and the music, without acting like it hurts his ears.

woopsie-do-again-and-again

Yes.
That's correct.
Again.
and Again.
Jack's button came out again this morning. This makes Saturday, Monday, and today (Wednesday).
Today the tube gently pulled on the side of Jack's highchair and we were walking by and the button popped right out! I went ahead and checked the balloon (there is a balloon that is filled with water which is supposed to keep the button in Jack's belly) The Button
I placed 5-5.5 cc of water in the balloon on Monday. Today when I checked it it had 4-4.5 cc of water.
I tossed both buttons from Saturday and Monday, which were both used and sanitized. Thank God for insurance. That was around $360 tossed away. I placed a brand new button in. Not easy when doing it by myself.
We see the Pediatric Surgeon tomorrow morning. . .maybe Jack needs a bigger button.

My little man

I got Evelyn and Jack 'matching' pajamas today!
The silly part is when I went to go check in on Jack while he was sleeping. I almost started to cry. I know my eyes started to tear. He looks like a boy. A child. A kid. A toddler. He didn't look like a baby laying in his crib. This was a very hard moment. My little man. He has a wonderful, big sister who loves him very much.

woopsie-do-again

Yes.

That is correct.

It happened again.

This time I did it while placing Jack on the floor. I do believe that his stoma (the opening in Jack's abdomen where the feeding tube enters) might be stretched. I called the Pediatric Surgeon and left a message with the receptionist. I am now waiting for a returned call. Maybe Jack needs a bigger button, or even a different type.

Argh.

woopsie-do

I just wanted to share our woopsie-do moment from Saturday. We had a family member taking Jack out of his chair and his button was accidentally pulled out, completely. The tube got hooked on the side of Jack's chair. This has happened in the past, but usually the feeding tube comes out of the extension, which locks into Jack's button. I got to play nurse. We got a back-up button in and the other one sanitized. Jack didn't seem to mind, at all! Actually, he was only angry when we had to hold him down to place the new button.

it was a no-go

Here's a quick update. Jack didn't have his first Speech Therapy session Friday morning. Evelyn ended up staying at home sick and was scheduled for a doctor's appointment at the exact same time as the Speech Therapist was going to come over. And, of course there weren't any other appointments available.
Speech Therapy has been rescheduled for next week.

Jack played in the Exersaucer and learned how to turn his body around in it. He also enjoys making it rock!
He also sat on the Bounc and Spin Zebra and play Motorcycle. He didn't scream when I placed him on,. He held on and I bounced him gently and rocked him gently. Phew!

Thursday, Thursday

I had that song, "Monday, Monday" in my head when I decided the title of this post.

Good week. I know we still have Friday, but it's been a good week. Jack has been very pleasant since he decided to sleep again. He's also been taking very good naps. I have had to wake him up each time. I feel bad about waking him up, but we do have a schedule to keep (pick up Evie from school, occupational therapy).
Jack's tummy issues seem to be resolved. At times, they do come back. We will be seeing the GI Specialist again at the end of October.
Jack was weighed Wednesday morning. He is finally 18lbs. No ounces or anything. It read 18lbs 1oz but Jack was wiggling and screaming on the scale! I'm going with 18lbs. My son is 20 months old and weighs 18lbs. He weighs as much as a baby 8-10 months old. He's around 29 inches long. That's not bad. His head didn't seem to grow over the past 6 weeks. We'll be measuring that again in 6 weeks.
Oh, and he's been 'talking' up a storm! Can't wait for tomorrow (Friday) morning! It's Jack's first Speech Therapy session! Can't wait. I need to be sure to take notes.
Evelyn has been sleeping since 4pm. She's been coughing since the weekend. No fever. No aches and pains. Just a stuffy nose and a cough, and now she's slept through a snack and dinner, and another snack. Hope she doesn't wake up over night. I still have to move her from my bed. That may not happen. . .

'night

oh dear.

So tired. Jack didn't sleep a wink Saturday night. Seriously. I don't even know how to get into the specifics because I'm just so tired.
The last time Jack slept was Saturday for a 1 hour nap. Nope. No sleep Saturday night. My mother and I rotated taking care of Jack, while the other dozed on the couch or in bed. Jason even had a shift in there. Jack just screamed and screamed and screamed, or wanted to play, but DID NOT want to sleep. He would try to sleep, here and there, but as soon as he started to doze he would scream. He would nod off in my arms, or in his car seat, only to wake back up.
We even took him along for an hour drive to an orchard, where he then received a good amount of fresh air. He only slept for 20 minutes. Jack tried to sleep on the way home only to continuously scream with his eyes closed. Every time he would start to doze off, he'd start to scream.
At the moment, he's been sleeping in his bed for about 30 minutes. It's around 6pm.
I'm not sure what tonight will hold.

trying not to be pissy

We just got back from the nutritionist in Springfield. No, I'm not mad at the doctor. In fact, she is very nice and understanding. I'm trying not to be pissy because Jack hasn't gained any weight since his belly issues. It doesn't surprise me, but I was hoping that he would've continued to gain, even with the poopy problems.
Speaking of which, I had the pleasure of taking a stool sample to the hospital yesterday, per GI's request. I'm still awaiting a call with the results. We're stuck in limbo with Jack not gaining weight until GI can fix the belly issues. The nutritionist wants to find a way to help increase caloric intake but can't until we clear up the belly problems. . .obviously.She was supposed to have the weight and length faxed to GI so they can see that Jack isn't gaining. . .I'm also very very tired right now so I feel like I'm speaking in circles. And, if I am, now you understand why.
I might have to take a walk to Startbucks with the kids. . .  . . . . . .  . .

Being mom to Jack. . .

A day in the life of being mom:
Jack wakes me up at 6:40am, screaming. I try to ignore him so I can sleep 20 more minutes. Nope. I get up, change his diaper, vent him with the syringe, give him his pacifiers, hope he falls back asleep, and...he's up for the morning. So much for a shower while the kids are sleeping. I carry Jack around while I open his medical drawers and retrieve his feed bag and gastric release bag, get his clothing for the day from his dresser drawers, carry the bags and clothes, along with the IV pole (and Jack), to the living room. We get a blanket from the laundry room to place on the floor. We let the dogs outside. On the way back to the living room, we grab the formula container from the fridge. We drop off the formula, and head back to the kitchen to make up the coffee for Jason and myself. We let the dogs back in. Back to the living room, coffee and Jack in hand. "Bye, Jason! Have a good day at work. See you tonight!" I attempt to lay Jack on the floor, only to listen to him scream as he holds onto my shirt. Eventually, I get him on the floor, but he continues to scream, top notch!
I fill Jack's feed bag with formula, prime the tubes, vent his belly once more, and start his pump. I then try to keep him quite ("good luck to me!"), because Evelyn is still sleeping. I think about taking a shower. Jack starts to scream again. I check his diaper, give him books, pick him up, put him down, pick him up, turn him towards me as he tries to throw his body around to me, put him down. No "Today Show" for me. I resort to "SpongeBob SquarePants". Jack is now content. "I'd better run and clean up, quick! Therapist in 1 hour. Evelyn still sleeping. Hungry. No shower. Here I come bathroom sink!
Clean and dressed. I quickly switch the laundry, think about folding it, don't fold it, empty the dishwasher, fill the dishwasher, think about vacuuming the floors, don't vacuum the floors, grab a banana, and come back to Jack, only to see that Evelyn is now awake, laying next to her brother!
"Crap!, the medicine port on Jack's extension came open, again!" I have to change Jack's clothes and the blanket he is on. There is formula and stomach contents all over. I think about calling the manufacturer of the extension to complain that it's come open at least 6 times since Sunday...I feed Evie. She gets dressed and brushes her teeth all by herself. I make the beds and comb Evie's hair. Jack is fussing the ENTIRE time.
Back on the floor. Text from therapist. Running late. Both kids on my lap. Cut Jack's nails. Still watching "SpongeBob SquarePants" and holding Jack. He's reading his book. Evie is finally playing...by herself!
Wish Evie was big enough to refill my coffee.
Jack just exploded while on my lap. (with sarcastic enthusiasm, "yeah"). At least I had the chance to get more coffee! Holding Jack. He's "drawing" on a piece of paper with a pen. He's talking to the TV "Fanboy and ChumChum". We read a book.
"Mom, will you play with me? Do it like this. Do this. Do that. No, Mom! Like this!"
Therapy has been rescheduled for Wednesday morning. Fold the laundry.
Meet with sister-in-law and her youngest child for lunch. Had to turn off the feeding pump to leave. Cleaned out tube with water. Unhooked entire extension tube from Jack's g-button. Nice break from home. Nice to leave the pump at home. All kids good. Had adult conversation. Had real food for lunch. Visit at home for a bit. Kids played. More adult conversation. Nice and partially relaxing. Jack is a good boy for his Aunty, who just happens to be certified in Occupational Therapy and does a little bit of play therapy with him!
Occupational Therapist comes. Good session. Used the KidKart in the house with the tray. Phew! Jack did very well. Jason home. "Hi Honey!" Watch a Strawberry Shortcake movie 4 times in a row. Jack watches it too.
Talk to pediatrician's nurse on the phone about Jack.
Talk to GI's nurse on the phone about Jack.
Uneventful evening. Good dinner (proud of my meal). Jack 'ate' some Apple Jacks! Clean up from dinner. Give Jack a bath. It's very fast. He screams and pulls on my shirt the entire time. Play with kids on the floor. Put Jack to bed. Start Evie in the bath. Pass her on to Jason so I can run to the store ("Hello, me time!"). Get some Target in. Get some Starbucks in. Come home. Make new container of formula. Mix up Jack's medications. Administer Jack's medications. Fill Jack's feed bag with formula. Start his pump. Try, very carefully, not to wake him during this process. There's a 70/30 chance he'll wake up. He sleeps. "Phew!" Clean up kitchen. Fill dishwasher. Set to run at 1am. Avoid human contact for just a moment more. Finish this blog.
The laundry is still sitting next to the dryer.

I just took some pictures from my phone and I wanted to share them with all of you.

One picture is of Jack sitting in a restaurant high chair! I was so surprised that he did it! And he didn't seem to mind. He lasted for about 10 minutes!
The other pictures are of Jack (and Evie) at McDonald's eating french fries. Jack just started getting interested in food again. He put a Coco Puff (it's about time!) in his mouth. Of course, he spit them out once soggy, but still. . .We went through 5 french fries at McDonalds. Jack didn't actually eat them, but he did chew them, and each one was VERY soggy.
What a nice change.

We still had the other issues, but I wanted to share something nice for a change!

communication

It's Monday morning around 8am. Jack and I are in our living room, both of us on the floor. Jack is on his blanket, hooked up to his feeding pump, which stands directly behind him.
He tried to communicate with me a few minutes ago. He made some silly sounds, waved his hands, made the 'where' gesture,  wiggled his fingers around while tapping them, and then pointed his index fingers at each other, which means 'hurt'. I asked him several questions, mentioned some objects and feelings, and he just kept trying...It's so sad when Jack tries to communicate with me and he doesn't know what to do and I can't figure out what he wants. I've been trying to teach him how to say 'yes' and 'ya' in words and how to nod his head, 'yes' but we haven't been successful yet. . .

Frown.

More changes. . .

Hi. Here are a couple of pictures from today. Aren't they cute?! I'm happy that they turned out with the life we've been having lately! Jack has decided to give us some new challenges lately. I'm not talking about his belly.
Imagine having a baby/toddler that is afraid to be picked up, put down, rolled to the side, put in a sit position, moved from one hip to the other hip, placed on your lap facing outward. Jack trembles, gets a very scared look on his face, gives a scared-sounding cry, and clings to me like he's about to fall 20 feet. It's gotten worse as the days go on. His odd facial spasms (since we don't know what that is) are happening more and more.
Jack's Physical Therapist and Occupational Therapist, both on different days, mentioned Gravitational Insecurity and Positional Insecurity. His OT said that it could be either vestibular (but she doesn't see how it could be related to his inner-ear), related to his head, or simply another sensory processing issue. The OT was stumped. The Speech Therapist wants me to call the Pediatrician to let her know of this new problem.

Oh, and by the way. . .Jack had his Speech Therapy evaluation. Jack will be receiving Speech Therapy as well. We'll be using a communication device to get started with ways to tell us what he wants.

and the news for the week. . .

I am tired! I am tired of listening to a screaming Jack, morning, noon, and night. I am tired of watching Jack his his head and face. I am tired of listening to Evelyn whine,whine, and whine some more. I am tired of being tired all of the time from not getting much sleep.
Thanks for letting me get that off of my chest! Ok. We, in all seriousness, were almost killed yesterday in an almost fatal car crash (not our fault, and I'm happy I saw it coming). We were on I-74 in Champaign-Urbana, heading from an exit 184 to an exit 181 to get a late lunch. Way far ahead I saw a ton of cars with their brake lights on. It looked like some major traffic. I started to slow, very early, to a point where Jason was asking, "Are you ok?", and I was like, "There are a ton of cars up there with their brake lights on!" Well, as I was getting to an almost stop, this blue pick-up truck came at the back of our van full speed. I thank God that I looked in my mirror and saw him coming right at me, and I quickly moved the van to the right as he swerved to the left, nearly hitting me, and several other cars behind him swerved. I could hear tires screaching all around! Thank you God for being with me and my family. And thank you God for making everyone else in the van unaware of the situation. We exited and I calmed down. My entire life with my family was flashing before me. What a scary experience. I love my family. I know we have a lot of stress and tend to get overwhelmed lately, but I wouldn't trade them for the world.
On a lighter note, Jack has decided to skip naps two days in a row, stay up screaming until 11pm, and then wake up several times screaming over night.
We add Speech Therapy to our services this week. Evelyn will start a dance class in 4 weeks.Her gymnastics starts in 2 weeks as does school.

little talker

I should be sleeping. . .but I'm not.
I thought I'd share some of the new things Jack is 'saying'. The words are broken, but I know, in my heart, what he means.

We walked into our book store at the mall, and Jack says, right away, 'ook' (book). Then directly after, 'meh ook' (ma/my/mom book). He points up at lights, and every now and then we hear, 'I' (light). He has also been sticking out his tongue while trying to say things. I hear a lot of 'ma me mom, mal, ba, ook, ool, da, dee, dad, Evie, mo (more)' etc etc etc etc etc.
He even goes crazy with his hands when he really wants to say something but doesn't know what to do.
Luckily we'll be seeing a speech therapist very soon. Can't wait to figure out all of these words!
He reaches for me or touches me to ask for help. He waves his hands and claps when he's crying if his belly hurts from all of the gas. He stopped hitting his head as much. Phew. He points to tell me where he wants to go, especially if he wants to touch something. My favorite silly thing Jack does lately? He reads a book with his feet. He literally turns the pages with his feet!
Oh, and I'm still having the belly gas issues. We're going on day 6 with the medication.

Evelyn and I were just looking at some pictures from www.cfcsyndrome.org and were looking at the boys that resemble Jackson. Here's the link if you'd like to take a look. So amazing how these little angels look so similar.
CFC International pictures-confirmed cases

The newsletter also came out recently. I've posted that link here in case you'd like to read up on any new information regarding CFC International. CFC International Newsletter-July 2010

Jack slept through the night last night, Monday. Phew! He's been fussy most of the day though. We're back on the antibiotic and I've also given Jack some ibuprofen to help him sleep. Massive amounts of gas have been exiting from his belly. On a brighter note, I'm now waiting for insurance to pay for Jack's Ergocalciferol. Ha! Can you read that? Ur-go-kal-ciff-ur-all. That's a fun one when I tell it to a nurse and she's trying to write it down. I usually end up spelling it. This medication is the vitamin D2 supplement. It's been working great but now we need a refill, and it's $102 for a 6 month OTC supply. It's a medical necessity because Jack's levels are low when he isn't getting the medication.We are waiting for insurance to receive a letter of medical necessity, and send us, as well as the pharmacy, the approval. Ugh. . .

That is all. Oh, and we met the family down the street with two boys, the same ages as Evelyn and Jackson. The younger boy has Down Syndrome. The family was/is wonderful! We have so much in common and the kids all played well together!

needs more meds. . .hope it helps

So Jack has been off of that antibiotic, Flagyl, since Wednesday evening. I just picked up another script of it for a 2 week round. And, Jack's symptoms have been returning. They were better than before the original meds started but still occurring. Now, they are getting worse again! Jack screamed for 3 hours last night 7-11pm. Then from 2-3am, and again around 5:30am. Lots of gas coming up again. So. . .back on the meds we go.

Praying they get better.

Jack in a Box

We've had quite a week here in the Waddell household.
Monday was the trip to St. Louis for the GI follow-up/ upper-GI/ hopeful diagnosis of the belly issues.
Tuesday was my father-in-law's third surgery since his work accident in September. This one involved his shoulder. Tuesday was also Evelyn's last mini camp at our Forest Preserve, Jack's Physical Therapy session, and Evelyn and Jack's appointments at the pediatrician. Evelyn's appointment was wonderful. Just a well-child. She's 3'3. Jack's appointment went ok. His pediatrician put him on a probiotic. So he's now taking the antibiotic Flagyl and a probiotic, all to help his belly, which is better than it was. Still lots of pressure, but nowhere near as much. His pediatrician was a little concerned about Jack's head circumference, comparing it to past measurements. We'll be getting it measured again in 6 weeks, by the same nurse. The concern is the risk factor of getting hydrocephalus/water on the brain/too much fluid. We're just under observation. I'm not too worried. I'm more concerned about Jack's belly. Oh, and Physical Therapy was TERRIBLE! Jack hasn't wanted to sit up for almost 4 weeks now. Pretty much right in line with when his belly started to bother him.
Wednesday was a nice break. We had some family time.
Thursday involved Evelyn's gymnastics class and Jack was the focus in the afternoon. Jack had Occupational Therapy and his 6-month review for his Early Intervention Services. Occupational Therapy was TERRIBLE. Same as before. No sitting up. Not wanting to work. No interest. Just screaming. However, when we had what I call our 'party' (physical therapist, occupational therapist, Division of Specialized Care for Children coordinator, and Child and Family Connections Coordinator, minus the developmental therapist), all in our living room at one time, talking about Jack and his evaluation scores, Jack was fine and dandy! He was even playing with his toys and talking a little, of course while lying on the floor. How were his scores: much improved, if we don't look at the numbers, from the past 6 months. He reached all of his goals for occupational therapy. His skills in this area are poor for his adjusted age of 16 months (because he was 6 wks premature). We are very please that he met all of the goals that were set 6 months ago. Regarding Physical Therapy, Jack made descent progress. He is sitting. That was our goal. His gross motor skills are delayed, but we knew they would be. His overall age equivalent for physical therapy is 9 months. However, we know that Jack will do things when he wants to. We can't compare him to other children. Our next goal is weight bearing. I'll show you pics later on in this post. For Developmental Therapy, Jack is doing very well! There are a number of developmental tasks Jack is performing at a great level! With that adjusted age of 16 months, Jack is performing several areas between 12-14 months. There are some that fall to 6 months (gross) and 10 months (cognitive), but I'm not worrying about that. Jack is a doll!
And the there's Friday. Friday was the big day. Jack got his AFO's (Ankle Foot Orthotics).

Notice the coffee mug, pen, and paper, in relation to the orthotic! It's so teeny tiny! And, yup. That's Spider Man! He tolerated the orthotics very well for the 1 hour today. Tomorrow we move to 2 hours.

I won't go into the probiotics flying across the room via syringe.

on the road again. . .

So my mother-in-law and I, along with Jack and Evelyn, made a trip to St. Louis Children's for a scheduled appointment. This appointment? All of these belly issues Jack has been having, along with his 6 month follow-up.
Jack had an upper-GI, which involves eating barium and then getting an number of x-ay images to watch the barium move through the gut. We also saw the GI specialist. The results: there is no blockage. Phew. I didn't think there was. But we still don't have an answer. We were given three possibilities for the massive amounts of gas.
1) Jack had a viral infection and the gas is a leftover result that will clear up on its own.
2) There is too much bacteria growth in a part of Jack's intestines. He has been prescribed an antibiotic to try this theory.
3) Jack is swallowing air, which is common in kids with syndromes (I didn't know this) and his speech therapist can help with this

So, yet again!, we don't have an answer yet. . .argh!!!!!!!!!!!!!!
Thanks to my mom-in-law for coming on the trip! She made the trip manageable during the appointments, and definitely helped keep me entertained during the drive!

So, we got back from our trip Wednesday evening. Phew. The trip seemed longer coming home, which is odd. I always thought that trips back seemed faster! This is probably because Jack fussed a lot, Evie wined a lot, my shoulder was very sore, and Jack pooped twice! I still don't understand why Jack likes to poop in the van!

The trip was great! I am so proud of Evelyn! She went on kid water slides, swam, and was very independent! I am also very proud of Jack. He, with much effort on my part, went in the water. . .several times! I had to hold him close to me, and his cuddled very close, but I was able to get him in the water! Jack slept pretty well on our make-shift crib. Other than the usual fussing over night, Jack didn't do anything different. He even stayed awake late, all stubborn and playing! Boy, oh boy, was Jack happy when we put him in his crib last night! He was bouncing and giggling!

Here's our concern. For the past 3 days, Jack has been hitting his head when mad or in pain. He's also been hitting me and throwing his body when we hold him. The plus side of Jack's attempts at communication is that he holds up his tube when he wants is vented. I don't like the head hitting. I don't know what to do about it. He hits himself really hard! Last week we was pulling at his hair when he was mad. Now, he's hitting his head. Does his head hurt?!

Oh, and no change to his belly/gut issues. Jack will be having an upper-GI performed Monday morning and then he sees the GI specialist Monday afternoon. I'm not sure what they are looking for, but hopefully we come up with a cure!