Settling Back In

John did okay for his first full day at home. He is on acetaminophen with codeine but we would like to try to wean him onto just regular Tylenol. The pain seems to come and go in spurts. Daddy is changing his bandage now. That hurts a lot because we aren't able to use water to get the tape off. His incision is not suppose to get wet yet. Monday he gets his stitches out and soon he will be starting physical therapy. We have someone with him 24/7 still as he isn't stable on his feet all the time and needs help moving his pillows when changing positions.
We are so grateful for all the prayers lifted up for John Boy and are very thankful to God. We ask that you would continue to pray for John as he recovers and then goes through his second (and hopefully final) surgery on his spine. I'll post the date as soon as we know. It will probably be around the first or second week of January and back in Long Island, NY. Before the surgery they said it should take place one to two months later but now they said to give him more time to heal.


Last night four of us went to the library sale near by and bought these three stacks of new-to-us books! We have some serious reading ahead of us! :) Jennifer has been reading to John today.

Pictures In New York

After this man found out John was going in for surgery the next day he awarded him a special sets of wings from the museum! He was very friendly and spent time out of his day to talk to us and made us feel at home with him.


The basket made for Dad and Mom from the kids


John with a blanket made for him by the people at the Ronald McDonald House


With all of his furry friends the night before surgery

Surprises at Home

A Bedroom Make-over!!! Uncle James and Aunt Penel and their family along with Mom's first cousin, Uncle Tommy and his daughter, McKanize transformed the boys' room into a cowboy horse ranch. It was a surprise not only to the boys but also to our parents because we gave Aunt Penel the girls' key to the house and kept it a secret that we were missing a key! :)

What happened to your old messy room, John??

Wow-Green grass, blue sky and a tree

Uncle Tommy did a beautiful job on the horses!

John sits on the soft bed with the pillows Aunt Penel made while Daniel checks out the Canadian goose.

Happy in his new cowboy bed

Leaving Ronald McDonald House

We made it through the first night out of the hospital. We are on the road now. We've made one stop already. (Every hour we are suppose to stop for John to stretch.) I post an update tonight when we are home!

Leaving the Hospital!! *Day Seven*

Practicing going up and down steps for the first time with his physical therapist.

Giving Miss Monica a hug after she told him she would go get his release papers ready! :)

Leaving Pediatrics

A happy family waiting for the elevators down

Riding to the Ronald McDonald House

Playing with his new toys on the floor
Help for Us When John is Home~
John is eager to visit and has been asking to see everyone back home. We thought we would remind everyone John's incision is large and looks impressive. He does not know what it looks like. If his friends (especially younger ones) come over, it would probably be good to caution them so they (or John) don't become too concern over the scar or the shaved part of his head.

Coming up Roses on *Day Seven*

John is doing pretty well this morning. He threw up once at 6:00am. Hopefully that won't delay his home coming date-although we certainly don't want to leave the hospital unless he is ready. We'll see how he does with breakfast.
At midnight Mom said he woke suddenly and said, "It's morning-let's go home!" He is refusing his pain meds (starting yesterday afternoon) and says he doesn't even need Tylenol! He has a high tolerance of pain and we were hoping that would help him in the end but we are surprised at this. -(Plus I think in his mind he doesn't want anymore medicine so he can go home. )
9:50am- John just finished his sponge bath and is getting out of bed for the first time today. The physical therapist came just now. She is going to help John Boy walk some stairs.
11:30am- John is resting with Jennifer in bed. We are waiting to be released! The PA (physician assistant) said John will be released TODAY!!!
1:10pm- The papers are signed -We're going!!!!!!!!!!!!
1:45pm - We arrived safely at the Ronald McDonald House. John cried on the way that his head hurt him. Dad and Daniel went to get his prescription filled right away. We are going to stay 24 hours here before going home to Maryland. More updates later.

John's Last Night (Maybe??) in Peds! *Day 6*

Tomorrow -as long as everything goes as plan John can leave the hospital! :) We are so thrilled!

Sitting in the beanbag, playing with toys

John is gardening with the lady in charge of the playroom

We have been asking John's doctors and nurses to sign this lab coat with messages. (Notice the cards and pictures on the wall behind them.)

A hug for Jen

A good night smile!

Making Strides on *Day Six*

Talking to Aunt Penel on the phone- See that getting-better-smile!!!
John didn't need pain medicine from 5:00pm last evening to 5:00am this morning!!! That is a big step and answer to prayer. His head hurt this morning but we are so happy the pain is subsiding some. Mom (who is still there with him from the night shift) said he smiled already today! :) We are smiling because he held down the food he ate (last night) for the first time! He never made it this long before, even while being on four meds for the tummy!! He requested juice for breakfast and is more verbal then just his old grunts to communicate.
The rest of us are getting ready to go to the hospital soon.
11:10am- John was feeling nauseous because of the pain meds but didn't throw up- a good thing! He made a trip to the playroom again and sat at the little table to build with Lego's and train tracks. He is eating ice cream by himself right now.
He is on the pain meds every four hours as needed. We are seeing the end of the tunnel and may even be home real soon if John keeps up this new pace!!
1:40pm- John is certainly make up lost time today-He hasn't slowed down yet! He does not like the hospital Italian Ice. I asked him if he wanted Rita's. John said, "Yes! And I'll pay for it!"
He told Amy with a smirk, "Let's play King and Queen. I'm the king. You're the servant." Then he giggled!! :)
3:15pm- It looks like we will be able to come home very soon! John is doing so well!! His neck is still stiff but we are working on that. Hopefully we will have some an exciting -going-home-date by this evening!
6:45pm- John made several trips to the playroom and even planted a potted plant while there, that he can take home. He ate a good bit of his supper and has held it down. Praise God for everything and all the milestones John has met!!
9:00pm- Guess What?!! It's not official yet but John might be released tomorrow!!!!! He is so excited as we all are! When he is released we have to stay another 24 hours at the Ronald McDonald House/ hotel before going home to Maryland.

A family trip to the playroom

Susan had to give up the lap top so John could play a short game :)

Opening a gift from kind friends

First Night in Peds *Day Five*

John seems to be improving so much more today. We are so excited! The last few days he had seemed to given up hope and a will to go on- No smiles and no response to our questions.

Today he ate almost all of his chicken nuggets and is already going over his breakfast menu! :) Praise God- no feeding tube!!!!!!!

He practiced "Ol' McDonald Had a Farm" with me and Jen. It was so cute to see him playing along with us! He has received a bunch of cards and gifts from many of you this afternoon. It has really encouraged him-he even smiled!!

Going to town on his chicken nuggets! :) (Doesn't he look nice with combed hair?!)

Cuddling a toy

Talking to Amy

Resting with Jennifer and little critter friends

Reading cards and looking at new friends

In ICU and Out *Day Five*

John Boy opening a package and a card from this morning's mail

John doesn't seem to be bouncing back the way we would like. We keep reminding ourselves he just had one of the most major surgeries you can have (the brain). We cheer for each baby step he takes.
This morning he seems no different. He is not talking or anything like his old self. He needs have some motivation and hope. We are telling him about all the people rooting for him and giving him your messages. Thank you for encouraging us and John!
The goals for today are to do as many neck workouts as possible and walk to the playroom with a physical therapist.
1:30 pm- We're moving to the pediatrics ward right now. I'm not sure why yet.
2:00 pm- I am crying happy tears -John seems a bit more alert for the first time in days. He even asked for chicken nuggets for dinner instead of the usual "Nothing" response! The nurse wanted him to walk to the playroom about a hour ago but he was in too much pain. He seems better now that the pain medicine has taken affect. They wheeled him to his new room- much bigger than the tiny ICU unit we were in.
We haven't been told yet why he was able to move out of ICU other than it might make John more cheerful.

Daddy and John watching "Lady and the Tramp"
4:00pm- John walked to the playroom with his neurosurgeon, Dr. Bolognese. It was a long walk but he made it. Dr. Bolognese had John find the fish tank for him and then "raced" him back to his room. John "won"! :)
Uncle James talked to John on the phone. He is not much up to talking yet but he smiled twice while listening! That was a first for today! :)
He is sleeping now after being up for so long- walking and neck exercises. I was massaging his shoulders and back until he fell asleep. Everything is going a lot better this afternoon after a rough start this morning.

5:20pm- John is eating his dinosaur shaped chicken nuggets! He has an appetite back for the first time since surgery!
Thank you for the prayers today!!!!!!!!!!!!

Getting back into bed after a nice long walk with Dr. Bolognese

Getting his back rubbed. He is very tense and stiff.

Nap Time

Walking *Day Four*

New movie of John taking his first steps.

"But they that wait on the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and John Boy shall walk, and not faint." Is 40:31

In ICU *Day 4*

John had a hard night last evening. He threw up what little he did eat and had a hard time getting comfortable while he was in pain.
He was able to get his ace bandage off- he wanted that off "'cause it itches". He has a regular bandage on the back of his head now.
The physical therapist said he is too stiff and needs to do more exercises. A good thing that happened this morning -he got his catheter out.
Pray that John will hold food. The doctor who came in this morning said if he can't hold food they will have to put in a feeding tube tomorrow.
12:20pm -John took his first steps with the therapist around his room. Another painful milestone accomplished. It's hard to watch him in so much pain.

3:15pm - He has been sleeping for while, peacefully. We like to see more of that. Still doesn't eat or drink enough.

7:00pm - John threw up again. It looks like he may have the feeding tube put in. Pray that won't be needed. We are ready to get rid of tubes not get more. God knows best!

10:00pm- John threw once more. The nurses are going to try to help him with a swich around in medicines.

Still in ICU on *Day 3*

John getting his wires put back together after his first sponge bath


Good Night John Boy! We love you soooo much!
(New movie at the bottom of the post.)

Here's one we caught with his eyes opened!


This is what he has been doing all day. Poor guy! The nurses want him out of bed more today. He sits in it for about two hours at a time, after that he is quite worn out.

Today is the start of day three. John threw up again even though he hasn't eaten anything since before surgery. He is on three different medications just for his tummy but nothing has worked yet. The doctor wants John in the chair more than the bed today but John is not excited about that. He is very brave and acting mature. When he cries he says, "I can't help it any more." That breaks your heart. We are still in intensive care and on morphine every three hours. Even with all the pain meds he moans about his head hurting bad. Last night he felt up to watching a episode of the Andy Griffith show (one of his favorites) and Barney and Opie really helped distract him. :) His legs are doing much better; still swollen though.
Aunt Marjorie and Grandma are being dropped off at the train station with the rest of the gang while I write. Mom has been doing night shift and is sleeping at the McDonald House now.
The doctor just came in. He wants to try to get John to take a few steps today if possible.
Thank you for your prayers today in your churches and families! We can't tell you how much we appreciate you all.
Update 2:00pm -John's pain seems to have subsided since this morning. Thanks for the prayers! He is back in bed, asleep. He did his neck exercises before getting in bed. None of us like doing the exercises with him but they have to be done often.
In order for us to move from ICU to pediatrics, John's pain has to be under control and he has to drink and eat without throwing up. Keep up the prayers!! :)
Update 10:20pm- John was tired today and not very responsive. We were hoping his bandage could come off but that has been postponed till tomorrow. The nurses switched him from morphine to a drug similar to it to be better on his tummy. He held down sips of water, ginger ale and a couple of cheerios. He seemed weaker -hopefully tomorrow will be a better day. Here is a new movie from today.

More Pictures of John in ICU *Day 2*

Resting in his bed with his furry friends


Helping him turn to his side


Dreaming of going home

In good hands-John and his favorite! :)

His First Smile and Joke *Day 2*

"I bet I could make you laugh Aunt Mar"
His oxygen was taken out. The marks are gone from his legs (another answered prayer) but they are still hard and swollen. (please continue to pray)
The physical therapy came and did exercises with him. This was not a highlight of his day. The neck exercises were hard to do and they caused pain and tears. But John was a trooper. Of course the next time he saw that lady in pink, there were no smiles for her.
He got out of his bed twice for about an hour each time. This took a good 15-20 minutes just getting him out of bed and into his chair. With each movement his little body ached in pain. His eyes watery and his movement slow with the help of two nurses he was able to sit in the chair only to plea for his bed. It was very painful for him to sit in the chair. We did our best to encourage John, saying how well he did in getting to the chair. With pillows all around him, supporting his limbs and his stuff animals, John soon fell asleep. It was a joy to hear his snoring.
John said to Aunt Mar that he could make her laugh, so he said something funny and Aunt Marjorie laughed and laughed, then the entire room fell into laughter when we heard John's first laugh. John wanted Aunt Marjorie to draw Amy and it was so funny it made him giggle with glee. Then Amy wanted to draw a picture of Aunt Mar but John said NO! he wanted her to draw her own. Of course it was"beautiful" and made him smile!:) We also played car races for John that he enjoyed. Of course Aunt Marjorie's car always beat Amy's.
They still don't want John to eat anything so we can't eat in front of him! Jen forgot this and had a piece of her cookie in her hand while she was talking to Amy who was sitting beside John's bed, John opened up his eyes and immediately ask Jen "What is that?" Jen, turned several shades of RED and with her quick reflexes hid the cookie behind her back and said "Noth-nothing, its nothing" she made a hasty exit; leaving Amy to explain to poor hungry John. John said in a still small voice "I know it was a cookie" and with that he gently closed his eyes.(probably dreaming of Jen's cookie) Amy breathed a sigh of relief. (awwwwww) With that Jen gulped the cookie down! Never to repeat her mistake.
Signing Off- Amy and FAVORITE AUNT MARJORIE!! :)

Our John Boy *Day Two*

This video is from last night of John being like a baby bird, wanting ice chips. Amy and I (Susan) tried really hard to load it but after two hours it came up as an error. This morning it worked! Yeah!

Prayer Request
When they laid John down on the operating table, they didn't want him to lay flat on his chest so pads were put on his legs to prevent it. When he got out and into recovery he had red marks where they had the pads and they were puffy and swollen. The nurses took x-rays and an ultrasound to check it out. There were no broken bones but the ultrasound showed some blood. They said not to worry it should fix itself but they will keep an eye on it. The last thing we need is blood clots! They also said that it will be painful to walk. Please continue to pray that the swelling in his legs will go down. We really don 't want to see John in any more pain then necessary.

This morning Dad called from the ICU; he came to switch shifts with Mom. John isn't moving as much as yesterday so the nurses have to come in every three hours to turn him over. He is still on morphine. Today is going to be a long day. They want to hopefully, get him up twice today to sit in a chair.

Update 12:20 pm- John has gotten up out of bed and into a chair already. He threw up twice but was very brave about the pain. The doctor increased his morphine to every three hours instead of every four hours. They changed John's bandage, what he calls "the hat", and Dad could tell he was in pain when they did that. There were tears in his eyes. He is doing his neck exercises so the muscles don't tense up and to help with the swelling.

Pictures of John Boy

John was moved from recovery to intensive care this evening.

Doing really well after almost eight hours in surgery. He is on Morphine for pain after complaining his head hurt.

He was very tired and it took a lot of effort to talk but he did say a few things- "I love you." "Where's the girls? Grandmom and Aunt Mar-ee?" "Mommy stay here."

We are grateful there seems to be no brain damage and he is remembering everything.

While laying here Jen told him, "I like your frog." John opened his eyes and said, "It's not a frog; it's a dinosaur." He wanted the pillow his little friend, Rachel made for him and is sleeping with it tonight.

Seeing Grandmom at his request.