News

Whoops! It's been a long time since my Mom wrote here, so I'll write something! I was really glad to leave the Hoogstraat and get home! I went to school half days but it was boring! I did the CITO/SAT test in March so there wasn't much to do...... My score was 547 out of 550!! I am so ready for highschool! I also went to two PUSA concerts! (Photos coming soon!) Wednesday I start my highschool career! I hope they're nice at that school. (Not like the Hoogstraat!) Our vacation in France sucked! It rained the whole time! The fun part was the bird show at the Josephine Baker Castle and the fishing. I didn't like the stinky cheese and the nasty goose liver pate! Yuck! I played a lot on my Nintendo DS with Pokemon. I have many strong pokemon:

Charizard Lv 100
Pidgeot Lv 100
Raicu Lv 100
Nidoking Lv 100
Nidoqueen Lv 100
Alakazam Lv 100
Tyranitar Lv 100
Blissey Lv 100
Mewtwo Lv 100
Groudon Lv 100
Kyogre Lv 100
Rayquaza Lv 100

The PC game I'm playing at the moment is AGE OF MYTHOLOGY
The book I'm reading at the moment is HITLER'S BLITZKRIEG (I'm really into WW2)
Favorite film at the moment is STARWARS: Any episode, they're all cool!
My Mom likes STARWARS EPISODE IV: A new hope. She saw this 6 times when she was a kid.
Favorite sites: YouTube.com and Nobodyhere.com (Pluck some nose hairs!!!!!!!!)
HI HA HO! Pluto the planet isn't a planet, IT'S A ROCK!!!!!!! They gotta rewrite all those books!
ROAR! Dinosaurs rule! I just wish they could be alive like in JURASSIC PARK!!!! If I were to come back as a dinosaur I would come back as: TYRANNOSAURUS REX! He was big and bad but now they think he had feathers!

Bye. Peter

Tomorrow he's coming home! Yipee!!!!! They wanted Peter to go home just for the weekend. No way! Once he's home, he's home. He never wants to go back! He was outside yesterday for almost an hour so it really is time to come home. Friday after dinner we'll pick him up. A new mattress and showerchair is being delivered today. Ron has been working like crazy getting Peter's bedroom floor finished. He put the last coat of varnish on yesterday so it still really stinks here. We'll have him sleep the first few nights in the livingroom. His floor does look much better. I have to get busy and make a welcome home sign to hang out front.

Alexander, Matthijs and his parents visited Tuesday evening. We had a good time playing cards and telling jokes. A package from America arrived with presents for Peter and Emma. Thanks Ben, Chris, Katy and Brad! Perfect gifts! Last night Peter's Opa and Oma came by. Tonight Natasha, Jeroen, David and Lotte will visit. (His last night there!)

Still beautiful weather here. Emma and the rest of the kids in the neighborhood ran through the sprinkler in our frontyard yesterday. Laika played in the water too.

XXX Joanne

Hi all.

Tomorrow will be three weeks after the operation and two weeks at the rehab. center. It's about time for him to come home. It's been long enough for everyone, especially Peter. Been there, done that. He never wants to see the rehab. center ever again. It's boring, the food is lousy and if something is good on TV (like a good documentary on Discovery or National Geographic) he's not allowed to watch it. He's played enough board games, card games, gameboy. It's time to bring him home. We want him home next week. We will bring him home next week.

Our day at the Efteling was great! Beautiful weather. People thought Emma and Serena were twins! Peter's friend Lucas visited with Peter and Ron's Dad and Janny. Mascha also stopped by with Joris and Wessel. (Thanks again for letting Laika out!) Ron and Emma slept Saturday night at the rehab. center with Peter. Most of the kids went home for the weekend so it was very quiet. Sunday Ben, Ron's Dad and Janny sat with Peter. Later that afternoon we brought Laika, Peter's black lab. He really enjoyed seeing her. Today he had school for the first time in a week. (Last week was tulip vacation, no school.) He finally had something to do! He did his work and talked about WWII again. It cheered him up a little bit. School is his hobby, his sport. It's the one thing at the rehab. center he likes.

The response from the PSUA fans in Peter's guestbook has been amazing. We can't believe people from all around the world have left messages for Peter. Everyone THANKS! Truely awesome!

Thanks for the fruit salad Petra and Loena. It was yummy! Thanks for the cards and presents everyone!

Vincent made another really cool picture with Peter in it! Peter loved it and wants to know how you did it Vincent! Maybe you can show him sometime?

XXX Joanne

Hi all!

Peter's x-rays of his back are good. He's allowed to go outside! Phew! Now he can start building up his outside time. They told us if he can ride in his wheelchair for a half an hour outside he can go home. Ron thinks he'll be able to come home the end of next week. I think in two weeks. They also said four weeks after the operation he can go home. That's in a week and a half.

I brought Peter sushi today. We had no problem gobbling it up. Peter's friend from school, Joel, and his Mom came by today. We played the card game "pesten" (tease? war?). Peter's Opa and Oma also stopped by. Yesterday Geerhard stopped by (see photos). He bought Peter a Nintendo game. Thanks Geerhard!

Since the cat is already out of the bag I might as well put it on the website.
This week I got an email from the manager of the band "Presidents of the United States of America", Peter's favorite band, ours too. He invited us to meet the band and see the show at the Paradiso in Amsterdam May 24th!!!!!!! Isn't this cool!!!!!! Our good friend Jeffery in Portland had asked them to send Peter an email to cheer him up. That's what got the ball rolling. (Love you Jeffery!) The next day Peter gets an email from the guitar player in the band, Dave Dederer, wishing him the best. (Such cool guys and nice people!) We're waiting to hear if Peter can get into the Paradiso with his electric wheelchair and if there is a safe place for him to watch the show. (If Peter's wheelchair gets bumped by wild, dancing fans it could hurt his back.) Hopefully all will go well. Will keep everyone posted.

When we told Peter he might be able to meet the "Presidents" and see them play his face lit up! "Really?!Serious?!!!!" I haven't seen him like that for a long time. Their music has lifted our spirits for many years. When we take Peter to doctor's appointments we play their music in the car, very loud ofcourse! It gives us energy to take it all on. It's fun kick ass rock n' roll. I'm proud to say my kids have been raised listening to the "Presidents". Go out and buy some.

Tomorrow the Efteling with Emma and Serena.
XXX Joanne

Hi all, Aloha to my parents who are in Hawaii, lucky bums!

Peter is up to four hours at a time in his wheelchair. This is great. He spends most of the day in his wheelchair and not on his back. He's also off all pain medication. Next step is to go outside in his wheelchair. He doesn't have much to do this week because it's vacation and there's no school at the rehab. center. Unfortunately the Hoogstraat won't let him see any visitors during the week except in the evening from 6 - 9pm. He's really, really bored during the day and they won't let anyone visit except his parents. Ron and I are there most of the time and bring him treats like raspberries and blue berries. Jan, Peter's physical therapist stopped by today and brought baklava, a Turkish dessert. Yum! The wheelchair people came today and Peter's wheelchair will be adjusted soon. His sits very tall now so there needs to be some adjustments made. And yes, he fits in our wheelchair van!!! (See photos) This was a big worry. We think he's grown (stretched) about 5 cm! He only has about 3 cm. head clearance left. (He'd better not grow!) Friday we'll take Emma and her friend Serena to the Efteling, the Dutch Disneyland but with a fairytale theme.

Thanks for all your cards and messages in the guestbook! Thanks to Yoka, Jerry, Betty, Kurt and Cody for their card from America. Thanks for the Starwars book from Opa Pete and Oma Carolyn, it came today. Thanks too for all the comic books!!!!

XXX Joanne

Hi Family and Friends,

It's been a few days since I've written. Ron and I have been spending most of our time at the rehab. center with Peter getting things organized. We've had some conflicts with the rehab. center which needed our attention. Most of these problems have been solved but we still feel we need to stay on top of things. (When it involves your kid everything must be perfect.)

He's making good progress. He's up to 9 hours a day total, sitting in his wheelchair, with rest times flat on his back in bed with his legs up . He's finally sleeping on a good mattress but still needs help when turning over at night. The institution regime is a little difficult getting used to but makes him extra motivated to get out of their as soon as possible. (We also want him home as soon as possible.) During the day he has physical therapy and school which he really likes. With May 4th and 5th coming up (Dutch war holidays) they're learning about the second WW. He loves this. The rest of his day is spent playing on his Nintendo DS Super Mario. Tuesday will be a big day when the city will come and decide which adaptations are needed for his wheelchair. Peter is not allowed to go outside yet so we still don't know if he'll fit in our wheelchair van. (Boys usually grow several inches after this operation. Before the operation Peter only had 5 centimeters head clearance! It's gonna be close!)

Peter has received so many cards the last several days we can't even count! We've put them all on the wall behind his bed and on the ceiling. Thank you! He loves getting new cards!

Give us a call if you'd like to visit Peter in the rehab. center. Tel: 030.236.8278

XXX Joanne

We both slept well last night. Up early for the move to the Hoogstraat. Peter enjoyed the ride in the ambulance especially when they turned on the lights and siren for him on the freeway. Once in the Hoogstraat we had to learn a new set of rules, faces and names. One big disadvantage here is they won't let him sit up in bed and he's not allowed to watchTV until after dinner. In the hospital he had his own room, a brand new bed and could watch TV when he wanted. The bed here is old and he is unable to sit himself up when he wants to. In the hospital he was sitting up in bed most of the time. We thought this was good for him. Ap parently not. He's only allowed to lay on his back or on his side in bed. (He hates this. Boring!) Three times a day he's put in his wheelchair for an hour and a half. Everyday his time in his wheelchair will get a little longer until he's able to sit all day. When he can endure the bumps of driving his wheelchair outside he'll be able to go home. Hopefully in just a few weeks. Let's hope so. He's sharing a room with a teenage boy in a wheelchair. The rest are all girls. Too bad he's not interested in girls yet.
His new address is:

Revalidatiecentrum De Hoogstraat
Rembrandtkade 10
3583 TM Utrecht
T.a.v. Peter Hendriks, Afdeling Jeugd

Bezoektijden (Visiting hours)
Maandag t/m vrijdagavond 18.00 - 21.00 (Monday till Friday)
Zaterdag en zondag van 13.00 - 21.00 (Saturday and Sunday)
Jeugdafdeling (1e verdieping)

We are happy so many people want to visit Peter in the Hoogstraat. Peter is building up his wheelchair sitting time and is not always available for visitors. Please call us so we can make a visiting schedule. Our phone nr. 030-2368278 or 06-51120410

Now I know what Ron went through the night before. Peter was off the morfine and monitors but a Tylenol (paracetamol) just wasn't enough for the pain. Finally at 2 am they decided to give him something stronger. He slept a little and so did I. I woke up tired and grouchy and got news we had to move into a different room. We washed Peter, changed his bed and put him in his wheelchair. He sat in his wheelchair for an hour with little pain. Back in bed we raised his legs and he got stronger pain medication. So far so good. We both took a nap. I haven't heard him complain much. Hopefully we'll both sleep well tonight. Tomorrow up early for the move to the Hoogstraat. The ambulance is picking us up at 9 am.
xxx Joanne

Thanks for the cards from: Tamara, Vincent and Max, juf Marjola and juf Lilian, Myrna, Moes, Briel and Clancy and the loud musical card from Ivo, Marscha, Myrthe and Nienke.

Ron took over Saturday but he didn't get much sleep. He was up all night with Peter. Although Peter is sitting more and longer in his wheelchair he still has a lot of pain in his back. At night there is nothing to think about except the pain. Not one position is more comfortable than the other. He uses the remote of his bed to change his position all the time. Sitting, laying down, legs up......up down, up down. Nothing is comfortable.
Emma was home with me Sunday. Just the girls. After talking and letting all of her emotions out she went outside and played. She is having a hard time too. After cleaning the house Emma and I, took the bus to the hospital. Ron, Ron's Dad and Janny were there with Peter. After they left, it was my shift with Peter.

Slept well. Less morfine. Some pain but getting better. Peter sat in his wheelchair for the first time today! It was only for 10 minutes but it's a start! Max came by with his family today. He had the operation a few years ago, same hospital, same surgeon. We had alot to talk about.
Ron brought a present from Fleur, Jasmijn, Yvonne and Gernand. It was something Peter was craving while in the hospital, salmon! Yummmmmm! He gobbled it up! Thanks! Hey Fleur, how about sushi next time?! (smile)
Ron is spending the night at the hospital tonight so I can rest (recharge my batteries). Emma is at Joris' birthday party and will spend the night there. I will have Emma all to myself tomorrow.
Peter was on the computer for the first time after his operation and read all of the messages in the guestbook. He really liked them and loved reading them! Once he can sit up longer he'll write more. We got the word that Peter will move to the rehab. center De Hoogstraat on Tuesday morning.
Thanks for the cards from: Marc, Marloes, Wim and Luc and Choco, Rob, Ina, Tim, Natasja and Lucas. Nice drawing Lotte! Thanks for the cool comicbook and card Lucas! Thanks Kerryanne, Hans, Carrie and Hugo for your very gererous gift! Natasja is our Jamie Oliver and sunshine! Love you Tas!
I'm having a beer now. Good night.
xxxx Joanne

Peter slept good last night and most of the morning. We tried to lift him out of bed with the lift but he had too much pain in his back. We'll try it again tomorrow. He now has a bad stomach ache.
Thanks for all the new cards from:
Rob, Mascha, Joris, en Wessel, Tim, Luc, Connie, Daniel en Amy, een mooie tekening van Daniel, een mooie tekening van Emma en een grote kaart van de kinderraad van Vleuten-De Meern.
To Fleur: Happy Birthday!!

xxx Joanne

Peter was in a lot of pain last night. On his back, on his side, nothing was comfortable. This morning they started giving him more morfine and now the old Peter is back. "This hospital food really sucks, blah!"
Natasha showed up at 10 am this morning to watch Peter so I could meet Ron downtown. We went to the " Handicapped Tradefair Support" at the Jaarbeurs. We always go once a year to look at all the new handicapped gadgets for Peter. Ron and I were back at the hospital at 5. Natasha left at 12.30 pm and Ron's Dad and Janny had the second shift. Today was the first day Peter was eating and drinking well. Oh, and complaining. I see this as a good sign. The physical therapist wants Peter to try and sit in the wheelchair tomorrow. Once he can sit in his wheelchair a half an hour he'll move to the rehabilitation center. He sat up today and watched TV in bed for a while so who knows. Maybe he'll be out of here by Tuesday or Wednesday. There's no Discovery or National Geographic channel so watching TV is boring. Thanks for the Star Wars photo, Vincent. Really good. Thanks to everyone who's signed the guestbook!

xxxxx Joanne

Last night at 12.30 I jumped out of bed from a call from the I.C. (I was sleeping in one of the parents rooms in the hospital). The nurse said Peter was awake asking for his Mama. He was O.K. He just needed a little reassurance over the phone and slept the rest of the night. I slept terrible and was awake at 6 am. At 7 am I was with him in the I.C. He was sound asleep, snoring a bit. After a while he turned over on his side and ate some pudding. Karel (Ron's apprentice from many years ago) stopped by. He works in the AZU, the University Hospital connected with the Children's Hospital. Peter sat up 45 degrees in bed for the first time today. Ron brought Emma around 1 pm. At 2.30 pm Peter was wheeled over to the frog ward. Peter has been sleeping most of the day. He's now in a private room and is hungry which is good. They're cutting down on his morfine but he's still hooked up to all the monitors. He's doing well. I'ts been only 24 hours after the operation.
Thanks to Karel for the card and present, Nienke and Rachel for their card.

XXXXX Joanne

This morning we took Emma to school and arrived at the hospital around 10 am. Peter was as calm as could be playing Super Mario on his Nintendo DS inbetween the last minute tests. He said "If the other Duchenne boys can do it, so can I". We were not as calm and brave as Peter. At 12.15 we wheeled him to the OR. After Ron put on the green hat and gown the last photos were taken. Ron went into the OR and was with Peter until he went to sleep.
And then we waited.............
At 16.15 we got the call, Peter was in the Intensive Care, already off the ventilator. He was awake and in a lot of pain with 3 nurses working on him. Machines beeping, and tubes everywhere. With an extra dose of morfine Peter finally calmed down. It's almost 20.00 hour and Peter is drifting in and out of sleep making jokes with the nurses. Joanne will sleep at the hospital tonight. Ron will go home soon and bring Emma here tomorrow (Emma is staying with her friend Jasmijn). Hopefully the worst is over. If all goes well he'll leave the IC tomorrow for afdeling kikker (the frog ward). Thanks everyone for all your good thoughts and prayers!
Ron and Joanne

Yesterday we went to the hospital and saw the surgeon, anesthesiologist, the intensivecare room and many other people. It took a long time. We were glad to go home at 17:30. Unfortunately we had to sit in a trafficjam on the way home. (That's Holland! One big traffic jam.) We were very relieved after talking to the anesthesiologist. She was up to date on what kind of anesthetics Duchenne boys should and most important shouldn't have. Just before the operation we'll ask them again what they'll be using. Better safe than sorry. They want us at the hospital at 10 am on Tuesday. He's scheduled to be operated on around 12:30.

Peter is getting tired of everyone asking him what he thinks about the operation. He says he's not worried about it and just wants to get it over with. He lets us do the worrying. His wheelchair is too small and will be adapted after the operation. He might not fit in our new wheelchair van after the operation which is a bit of a concern. The surgeon said he could grow up to 5 cm! We'll just have to wait and see. It might come down to a different wheelchair (lower) or adapt the van again which would cost us a lot of money. One problem at a time.

Ron's Dad and his wife Janny are coming over Sunday for Easter so I need to go grocery shopping. Monday is second Easter day which is also a holiday here. If the weather is nice I'll work in the frontyard this weekend. I'm gathering things to take to the hospital.

Groetjes, Joanne