Our last day and a video!

Check out the video I made. It takes a while to "buffer" so if you don't want to wait, don't worry with it.



We were up again at 5:30am for the last day of the infusion. Jon woke up much easier this morning, I guess because he went to sleep at 7pm last night.



He had a visit from Lyndi and her parents today. It was good to see them.



I started packing up our stuff. A significant portion of our luggage is taken up with the 81 cards he got this time! Thanks to all of you who sent cards.



We are going to try to get out of her very early in the morning (6am) when Jon's study ends. He has a field trip tomorrow if we can get there in time.

Miss Us?

Did you miss us. I got lazy. Sunday we hung out around the hospital and this morning at 5:30am we got started with the infusions. Jon gave me a big scare this morning...we couldn't wake him up. Turns out everything was fine but made for an exciting morning.

As usual, he did great with the infusion and diet today. He is my hero...never complains.

This afternoon he had a visit from his teacher, Pam Layman. He was so excited to see her. He took her up to the 16th floor and showed her around. Everything was closed since it was Sunday, but he still got to show her everything.

Tonight, Jon went to sleep at about 8pm so I got some "mom" time alone. Hope he wakes up better tomorrow!

Iron man and care packages

Jon had a good day today. He slept until 8:30am (that was after being woken up at midnight and 6am for medicine. He got a call at about 11:00am that he had a package in the mailroom. We went and got it. It had wonderful Egyptian markings on the outside and some exciting prizes on the inside! Thanks Glen & Sandy!!! Jon had fun playing with all the goodies with his nurse Jenelle.

This afternoon we went to the movies and saw Ironman. We went to the 1:15 showing and it was us and 3 other people in this HUGE theater with really comfy seats. Jon even got to have a little popcorn.

We came back and this evening he went back to star on Radio Lollipop. He told a couple of the jokes some of you have been sending. It was a good day.

Thanks to Angela and Steve McGuire for cards today!

Jon says "Thanks for the package!! We went to the movies and radio lollipop and it was fun."

Radio Lollipop

Jon went back to Radio Lollipop tonight. He got to tell a couple of jokes and request a song. He had fun hanging out in the radio station talking to the volunteers. Couldn't get him to dance though!

What day is this?

I am loosing track of the days already. Couldn't figure out if this was Tuesday or Wednesday. Jon and I decided to take a trip out of the hospital this morning to try and avoid the afternoon rain (it didn't rain here this afternoon however). Once again we rode the light rail system to the museum district. It is a dollar and stops right at the hospital and in the museum district. We went to the Museum of Health and Science, better known in our family as the Human Body Museum. It is a great museum and we love going there. Jon wanted to buy everyone something in the gift shop, but his wallet prohibited it. He did get Daniel something and also a teaching aid for Ms. Layman's class.

When we got back to the hospital he had a lot of mail delivered to him. First was a box from dad...thanks dad. Then there were the cards...Big thank you to Becky Henry; The Bell family; The McBee Family; Cody Morgan (who is a State Farm person who saw the picture of Jon with Rita); Glen & Sandy Steiner; The Styles family in the UK; Pam & Brandon in New York; Amy & Maia in Iowa; Cris & Noah O'Connell; the Krain Family; Angela (aka Snow White); Granny Ginger; Zach Dionne; Mrs. Lisa, Trace & Bailee; Terrell Dionne; Janie Andrews; Slade Ferguson; Judy Lewis; Edie Comeaux; Pam Layman; Ginger & Cody Hogden; and Olan & Sarah Weeks.

Once again I want to say thank you for all the cards. I put them up in the room, on the walls, doors, wherever. They are like visible hugs from all of you. Jon loves getting them and showing them off to the nurses and doctors. He really loves the jokes you guys are sending too. Thanks for continuing to remember us up here!

Houston Museum of Natural Science

We had a big adventure today. We took the "red line" public transit train to the museum. It was really easy and fun too. Jon was a bit disappointed that it didn't drop us off right at the door of the museum though.

Jon got to see some cool Egyptian stuff. It was really funny. I was taking pictures of all the Egypt stuff, trying really hard to get a picture of a cat mummy under glass. Jon kept saying, "Mom, read this. Mom, you need to read this." I kept telling him to wait, I was almost finished. Finally in my own time I turned to read what he wanted me to read. It was a sign that said "No Flash Photography". Guess I should really listen to him more often, huh? We saw all kinds of really cool stuff in the exhibit hall. Found out that on Tuesdays from 2pm to 8pm admission to the Exhibit hall is free. Note to self, plan your next visit on Tuesday afternoons.

We also went to the Butterfly house. It is always so cool to go there. They have remodeled the entrance/exit and include all kinds of insects. They have game shows, lots of interactive stuff. We spent a while in there finding out how dumb we are about bugs.

We cut out of there just in time. We got back in the hospital and it started raining pretty hard. It was a great trip. Here are a few pics. You can check out the rest on the Snapfish site.

Jon got a load of cards today. Thanks to Angela Dionne (aka Snow White); Granny Ginger; Natalie Harrison; Slade, Blythe & Stone Ferguson; The Bozmans; Helen Stankus; Mary Mullins; Brad, Tiffany & Chloe Jones; Belinda & Angelica Mitchell; Edie Comeaux; The Fickens; Uncle David & Aunt Sandy; Micah; Cassie & Clinton Curnutt; Tammy Temple; Angela Raithel; Anna & Al Oliphint; Ms. Layman; Jimmie Lea, Mark & Dana Simmons; Cheryl Royal; Debbie Burch; Charlene Wappler; Madison & Connor Newcomb; Granny & Paw; Chris & Larry Ford; Coach Larson; and Brandi Smith.

Good morning

We got to sleep late this morning since they are not starting the medicine until noon, yeah! Jon spent the morning working on his Egypt homework, sharing his new King Tut book with the doctors and nurses and researching the Egyptian god Thoth. After all this was done, he and I decided to take a walk to the mail box in front of St. Luke's Hospital. Then we decided to keep walking. Walked a couple of miles around the medical center. It is really a beautiful place. We enjoyed ourselves alot. Now he is just hanging out waiting on lunch!

I've Got Mail

They just brought Jon more mail. These cards were sent on Friday. I am surprised they made it to him. Thanks to Amanda Ginn, Angela, Edie Comeaux, Dad, and Misty Butler for making our first day back brighter!

11:30pm, I know you all think that I pose him, but I don't. He is SO peaceful, I couldn't help but take the picture. Rita his State Farm bear is keeping him company.

We're BACK!!!

We made it back in after a VERY short home visit. Jon is taking it all in stride and planning his week on the calendar Mrs. Lisa gave him. I hope the weather will cooperate with all his plans! We are in the same room, 1026, and have gotten everything in it's place.

Jon was excited when he got to meet the daughter of one of his nurses. He was also excited to try out his Whoopie Cushion on Janell, his nurse tonight.

If you are in Houston, stop by and visit us.

There's no place like home...

Jon popped out of bed today and said..."today is going home day, right mom?" He is patiently waiting on the bed for his breakfast. Then he will be patiently waiting on the doctor, then we will go home.

We got a big delivery of cards last night. He ended up getting a total of 83 cards in all. AND he insisted on counting them all! Thanks to

Deana Blackmon,Coach Larson, Mark O'Dell, Granny&Paw, Angela, Edie Comeaux, Glen&Sandy Steiner, David Mumbach, Snow White, Byron Smith, Brother Billy, Ms. Layman, Justin, Kameron, and Brandi Smith.

We will be back to the blog on Monday, see you then!

Jamie & Jon

Infusion Day 2, 3pm

Jon got his IV and port out this afternoon. He was happy. He took a hot bath and is waiting on me to play Wheel of Fortune on the PS2. We will be leaving in the morning sometime and will be home for the weekend. We come back on Monday for a doctor's appointment in the afternoon and admission back to the research center at 5pm. On Tuesday morning we start over again.

We started packing up our stuff this afternoon and took down Jon's cards, all 53 of them. The mail hasn't been delivered today so there may be more. Thank you all for sending them. They have meant a lot to both of us.

Infusion Day 2 6:22am

This morning went much easier than yesterday, if that is possible. Jon still had the IV port and the port for the blood draws in place. He slept through the blood draws but still had to wake up for the "OTHER" collection and to eat his first snack...goldfish, grapes and Sunny D.

Infusion Day 1, 2:30pm

We finished the IV for today, yeah! Jon still has the port and the IV tube in but he is not hooked up to a machine. We still have to collect his "output". We will do it all over again tomorrow. He did great, big surprise.

Right after he got unhooked he wanted to get dressed and go up to the library. He checked out 3 books on.....Egypt. I can't believe that he hasn't read them all yet! They are having a book fair here today and he didn't want to buy anything because they didn't have any Egypt books.

He got 3 cards today. Thanks to Ms. Judy, Angela Raithel, and Granny Ginger.

Tonight should be pretty laid back, I hope.

Infusion Day 1, 10:30am

Well, things are going pretty well. Jon fell asleep about 10:10am so I crawled on the couch, covered up, and dozed off. At 10:22 the nurse came in and said we had to wake Jon up for his next "mini meal". We have to stick to the every two hour schedule. He had ice cream and strawberries. He liked them, but wasn't too happy about having to wake up from his nap!

Infusion Day 1, 5:15am

5:15am Nurse Ron wakes us up to get our day started. First he has to start a port in Jon's right arm for the blood draws. This will stay in his arm so they don't have to keep sticking him. Jon is a trouper and got through it with only one little whine. They have to put a board on his arm to keep it straight because the port is in the bend of his arm.

Next they switch to his left arm for the IV. First they try to put it in the middle of his forearm so it won't affect the use of his arm. It was a no-go and it hurt Jon. So they went on down to his hand and got that with no problem. Unfortunately he thinks he can't use it and I can't convince him that it is OK.

He will be eating every 2 hours so he started out at 6:20 with Goldfish crackers, grapes and Sunny Delight. I told him I wasn't going to feed him so that encouraged him to eat with his left hand. He won't pick up the glass so I am having to help him with that...he needs to eat everything they give him.

I thought we might go back to sleep but nope, too much excitement. So here I am and there he is watching TV. By the way, notice the cards on the door to the bathroom...that is only a few of them, thanks again!

More later.

A Star is Born

Tonight we went upstairs and played Bingo...Jon won 3 prizes. Then we went to Radio Lollipop. It is an in-hospital radio station. They do contest with kids in the hospital, take requests, have a craft available upstairs and they go room to room for kids that can't come up. They will also put the kids on the air. Jon got to tell a joke...thanks Angela for the jokes. He requested "The Start of Something New" and sang along as they played it. He was so excited. We got a second Card delivery today...Thanks to Aunt Sandy & Uncle David; Angela; Camden & Caleb; and Granny Ginger. We even got a riddle to tell on Radio Lollipop on Thursday night...Thanks Camden & Caleb.

Tomorrow starts the infusion days. They will come in at 5:30am and put in an iv in one arm and a port to draw blood in the other. He will eat small meals every 2 hours, they will draw blood every 2 or 3 hours, we will collect all urine and of course he will have the iv. We do this for 2 days then we come home on Friday. Be in prayer for both of us. We have done this before but never for two days in a row. It is pretty much just sitting in the bed all day which can be way more tiring than doing something!

Finally the Zoo

We finally made it to the zoo today. We went this afternoon just as all the school kids were leaving. It left the park almost empty which was great for us. As usually, we saw everything in under 2 hours. I actually got him to stand there and watch a baby monkey and it's parents for about 10 minutes. It was really cute and we made up what we thought the monkey's might be saying to each other. It was overcast and cool, which made it really nice.





Jon: " The zoo was great. We saw all kinds of animals...monkeys, lions, tigers, we saw everything. My favorite thing was the komoto dragon, but the snake didn't escape (they were repairing the glass on a snake exhibit). It was fun and then we had to go to Target to buy Kaotic cards but they were $14 so instead we bought some Neopet trading cards. Then my mom had to get something to eat. She ate lunch. Tonight we are going to eat dinner and play bingo upstairs."

You can look at all the pictures by going to http://jonattexaschildrens.snapfish.com/snapfish and the room code is jonathan

Jon got 13 cards today. Muy Gracias to:

Brandi, Angela; Terrell; Aliceson; Emily; Jake; Glen & Sandy; Granny Ginger; Ms. Kim, Lisa & Mistee; Ms. Layman; Lyndi, Kameron, Mikey & Katelynn; and Snow White.

rain rain go away

It has been a dreary day at Texas Children's. We had planned a trip to the zoo but the rain stopped that. We have spent most of the day in the room playing games, doing school work, watching TV and napping (well, I tried to nap but someone kept waking me up).

Jon got 12 new cards today. A big thanks to:

Scooter, Angela, Snow White, Terrell, Jake, Zach, Ginger, Patsy Chambers, Chris & Larry Ford, Reida Davis, Haley Richard, and Brandi Smith. He now has 33 cards on 2 walls! I am going to have to replace the tape at the nurses station...which is a small price to pay for how happy the cards make Jon.

We have one more free day then we start the 2 days of infusions. Then on Friday we will get to come home during the "wash out period". That is the 3 days it takes to get the drugs out of his system. Then we will come back next Monday and start over again.

Thanks again for everyone who is keeping up with us either through calls, cards, e-mails or blog posts. We really appreciate it!

Jamie & Jon

A special visit

Bryan and Daniel gave us a treat by coming for a visit. They picked us up at the hospital and we made a trip to the Houston Museum of Fine Arts. It was "fine". There were some Egyptian items there and Jon loved that. We went by Target and I went to Kroger's to get a few food items for me. Daniel came back to Jon's room while Bryan went on to the hiking store. The boys and I went up to the game room for some fun time then came back to the room to hang out. Jon got 8 more cards today, making his total 21! He gets exited when he gets new cards. Thanks to all of you who have sent them...big shout out to you:

Ann Anderson, Lynn Richard, Granny & Paw, Maw Maw, Bailee and friends, Angela, Mrs. Lisa and Jayne!

Day 3 begins at 12:03am

Well, it's a new day. We had a great time last night and were very tired when we got back. We both went to sleep around 11pm. At 12:03am our nurse Ron comes in and wakes me to help him wake up Jon so he can give his medicine. His medicine schedule is every 6 hours on the 12's and 6's. So they wake us up at midnight and 6am. We could not get Jon awake last night, he was just wiped out. Unfortunately the meds are non-negotiable, so we had to break out the cold wash clothe. Have you ever been woken up with a cold wash clothe? He was grumpy to say the least. But we got the medicine down and he went back to sleep, and so did I. Then a few minutes later (or so it seems), it is 6am and we do it again...oh, it sounds like I am complaining, doesn't it? I am not, I guess. The meds could come in shot form, then we could really complain, huh?

Today we are headed to a museum. Not sure which one we will go to yet. There is the Human Body museum which is very good, Children's museum, Museum of fine art (I have free tickets there), Museum of natural history, and the Holocaust museum & Funeral museum (think we will skip those). I will let you know how it goes!

Astros Game

We just got back from the Astro's game and the won, woo hoo!! Mona came over and picked us up and took us to Minute Maid park. We had great seats and didn't have any problems bringing Jon's food in with us (he has to remain on his diet at all times). The game was great and we had a blast. Here are a couple of pictures.

Day 2 in the works

Here we are at day two. It is a good day. Jon got 13 cards today. The hospital has a program on there website that you can send patients cards. A big THANKS to:

Rachel & family, Edie & Ben, The Dingers; Kameron; Angela x 2; Camden & Caleb; Chris & Larry; Andy, Misty, Brinley & Connor; Laci, Kristen, Autumn, Dean, Isabelle, Chad & Chana; Cristal & Beaver, The Crain Family; and Blake . We went up the the game room and played Foosball and pool for a while. This afternoon we are going to be picked up by Mona and we are going to the ASTROS game!! Watch for us on TV, we will be behind 3rd base. Too bad I forgot the gloves!

JON: I am going to the Astros game. I am wearing my Astros shirt and my Astros hat. We are going to have fun.

We will let you know all about the game. Hopefully it will be as exciting as last night's game!

Day 1 in conclusion

Well, we finished day one. It turned out to be a good one. We walked down to Hermann Park and strolled through the park. We played Bakugon...Jon's new dueling game. I have no idea what I am doing, but he lets me play anyway.

We had an interesting time with Jon's medicine regime. He has to take Zantac because the new med can cause heartburn. They sent him a pill, instead of liquid. I told them I thought I could get him to take it. I did get him to take it, then he promptly threw it up all over the floor. It was my fault because I stuck my finger down his throat to get it down. Fortunately he hadn't taken the other meds yet. Next he took his arginine, which is what he takes at home. He did great with this. Then came the Buphenyl, or the placebo, depending on which part of the blind study we are doing. It comes in a powder and has to mixed with something. We chose a melted orange Popsicle. It dissolved pretty quickly and he took it well....We do this every 6 hours.

At his 6 pm doses they sent the Zantac in liquid form, which has a funny taste but Jon was a trouper and got it down. Arginine, no problem. The nurse, a different one this time, mixed it into this thick syrup that they used for other stuff. It clumped up and would not mix in. Jon tried to take it. Finally I got him to drink the grape flavored liquid out of it then I mixed the clumps in a spoon with his mashed potatoes from dinner. So he had lumpy, grape flavored mashed potatoes. At least he was used to the lumps! His nurse tonight is going to go back to the Popsicle. Since we are the first in the study, there will be some trial and error. Tomorrow will be better.

I asked Jon what his favorite part of the day was, he said "playing Bakugon with you at the park".

Jon's summary of today: "I got to go to the teenager game room. We played Foosball. I got my hair cut and met some baseball players. They game me a shirt."

If you want to keep up with our pictures you can go to http://jonattexaschildrens.snapfish.com/snapfish and enter the code word :jonathan.

Thanks for all your support!