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!!!!!!!