Back in action

That's right, Maddie is back! She saw the doc today and received permission to get back into softball, recess, gym, etc.! She was so excited. We scooted home and she actually caught the last inning of her softball game tonite with a warm reception from her team, the coaches and parents, even a "welcome back" game ball-so cool! Maddie had a couple of other treats this morning, as she was able to see Miss Kym briefly and was given a lacrosse stick and "pink" ;) ball form the Penn lacrosse girls team. She then had plenty of photos taken of her by CHOP marketing for some fundraising brochures. Playing model for awhile was decidely fun for the Madster and before long she was hamming it up. One stent came out, one stayed in. When the other one comes out, she can then have her nephrostemy tube removed and we will cap the SP tube. We will collect data for a week to give Dr. Canning futher insight into her bladder issue and go from there. Next appointment is set for the 23rd, provided she has her right stent removed and we have a week's worth of data.

Going to school

I just got back in town and am happy to report that Maddie went back to school last Tuesday, about 2 whole weeks earlier than we thought she would. She has been feeling fine and doing great. She even came to my graduation ceremony (Diane surprised me and brought the kids) on Friday at West Point, where we had a nice walk afterwards on campus. Her next appointment is tomorrow, and we hope to hear good news, which I will post for us all.

Kidneys are draining fine!

Maddie has been doing great! She had appointments on Thursday (ultrasound and stentogram) and it appears that the ureters, or now, “ureter” drains fine to the bladder indicating a successful operation. Thank God! Her nephrostemy tube was crimped and she will have more testing and follow up on Monday May 7th, and Wednesday May 23rd, just to confirm the drainage is working properly. On May 7th, CHOP will be taking her picture for marketing and fundraising.

Maddie had the privilege on Thursday to see both Miss Julia and Miss Kym, quite a treat. At the rate that Maddie has been progressing, it looks like she might be in school this week! She has not been on any pain medication since last Monday, which I think says a lot about the surgery success as well. I even bet she will be playing ball by the end of the month should she keep up her healing trajectory.

Maddie would like to thank more folks who have been very generous. To Miss Ramunda, thanks for the fluffy moose & cards. Miss Hopper’s class and made cards and sent them, Abbey helped Maddie get through them all, very thoughtful. Mikaela Hornfrom Maddie’s class sent home sponge guy books and crayons, etc to keep Maddie entertained. Uncle Rob, Aunt Madeline, Christine, Lisa & Robbie sent an amazingly soft teddy bear with balloons that cheered Maddie on and up. Bestamore came by for a visit that was fantastic and allowed some viewing of soccer for Abbey and baseball for Chris as well. Yet I have to say that among other things, the bug “bloody putty” from Aunt Lisa, Uncle Pete, Lexy and Natasha has been the biggest hit around the house. The kids can’t seem to get enough of the grossness, thanks Lis. Later today, Maddie should be surprised by a visit from Grandma Sharon and Grandpa Gary. They intend to stay the week, and this will truly be a blessing, not just to Maddie, yet to the whole family, as it has been quite awhile since we have seen them (New Year’s in Pittsburgh).

Swing!

Maddie takes a few hits with Daddy at Penn

Doing fine

Maddie has been doing great at home. On Sunday afternoon on our way home, Maddie stopped with me to catch some of Chris's baseball game. I thought since she was sleeping when we got there perhaps Abbey or Ellie would sit with her in the car for a bit while I cheered Chris on. However, out of the car she insisted, wearing her hospital gown and robe, carrying drain bags in one hand and holding onto to siblings with the other. She sat through 3 innings in the shade, enjoying a reunion with her brothers & sisters, as well as Rob, Kathy, Emilia and Jack. Maddie has hardly touched her pain medicine so we think she is recovering just fine. She got outside today to sit and do some homework. Thursday is her next appointment to remove stents and crimp the nephrostomy tube. We are both glad to be home, sleep in our own beds again and tonight was the first dinner we have had at home together in over a week, very nice indeed.

Going Home!

Only posting long enough here to say Maddie has permission to leave, contingent upon her promise to hydrate properly (she was a little dry through the night). She also has to walk for nurse Krista before we leave. The staff is top notch here. Thanks to all who have helped get Maddie back to health!

Maddie has a few weeks now away from school and activities, then gradually get back into it. Her pennrose drain was pulled out this morning by Dr. Patel and she will have the stints removed on Thursday. 10 days after that she will be tested to see if this operation was a success, in which case she would then lose the nephrostomy tube. After that, we concentrate on solving the bladder problems, and hopefully get rid of the superpubic tube. Maddie will be home for a long while, friends are encouraged to drop by for a visit and/or at least give Maddie a message of encouragement on her blog. Just click the "comment" after a posting. If anyone would like to "post" a picture or write something more in depth, contact me (Gene) and I will give you permission rights and a password. God bless you all!

Maddie making progress 4.21.07

Okay, so here is the latest. Maddie had a pretty good day yesterday yet experienced some pain and bleeding from her superpubic tube last night. If she does well today she should be able to go home tomorrow. While the staff at CHOP (special thanks to Dr. Canning and his team- Bruker, Chang & Patel, Nurses Ellen, Helen, Krista, Marla and more) who have been just great to Maddie, we are BOTH ready to get home. Maddie has enjoyed many visitors. On Thursday Mr. Ballentine came for an afternoon visit and brought her a real softball. Mommy and the “gang” came down Thursday evening, as well as Miss Kym. Miss Kym showered Maddie and the kids with gifts from her as well as Penn, very cool indeed. We all had dinner in Maddie’s room, it was like a party, and just in time, too. On Thursday Maddie also spent much time playing with Miss Danielle, a child life intern from U of Tennessee. The two of them seemed to appreciate each other’s sense of humor and were always joking around (maybe) all week together.

On Friday Daddy had to go to a meeting so Maddie went it alone for the morning and did fine. She had her epidural removed and was given the green light on liquids. Later in the day, despite a rough fall the night before, a very generous Miss Kym spent the afternoon with Maddie until Daddy could return. Maddie had been in a chair for most of the afternoon playing and doing crafts with Miss Kym. She tried to walk to the playroom yet opted for the wheelchair instead. Her first time out of the room since arrival on Monday, she was given a “tour” (cause that’s what Dad does, right?) of the floor, ending at the playroom to pick out some new flicks. As soon as we got back to the room and settled down in bed, she was “out” in nanoseconds, tuckered from the day’s activities.

This morning Maddie’s doctors have given her the “go” on eating and she had her first real food since last Sunday, downing 3 french toast sticks. The plan for today is to get her off IV pain meds, on oral pain meds, get her cleaned up, and walking a bit. She seems up for it.

On the home front we have many folks helping out so that the other kids do not miss a beat. Diane went on the ZCC women’s retreat as planned and we hope that her time is rewarding and she gets a little time away from it all as she certainly deserves. John Schirripa took Chris to his baseball game last night, and met up with Chuck Collier and the kids. Josh & Daniel tagged along for a “boys night out” and they ended up over at Chuck’s for dinner. Sydney babysat Ellie and Abbey and then Rob & Kathy came down from Troy to hold the fort for the weekend. This morning Abbey has a soccer game, Chris has another ball game this afternoon and Syd has a ride with Anna to her Choir performance for TCS. I hope Rob finds the plans for our vegetable garden while he is there ;). Thanks to everyone for making this so much more manageable and allowing our world to continue for the rest of the family, God is good to us!

Maddie wants to thank everyone who has visited, prayed for her, visited her blog or have sent a gift. She has been very encouraged and some have said she has been encouraging as well. She loved the 10 foot long “get well card” that the school sent (it has been a big hit with the staff and Docs as well). Maddie’s class sent her a get well package and Grandma Judy sent a fruit basket that came in to good use for others this time. There have been many other thoughtful gestures (like a mom from Maddies class packing her a gift per day, that has been special for Maddie to look forward to). We are hoping the next post is from home, thanks for all of the encouraging comments on the blog, I either read them to Maddie, or she reads them herself. As I post this one she is with me in the playroom, this is the first time she has walked more than 2 steps since we got here, good progress to get us home!

Thanks Miss Julia!

Maddie keeps talking about her time spent with the softball girls of Penn this past Saturday. She sends out special thanks to Julia Cheney for her effort to help make it happen!

April 18, 2007 Update

Maddie has been doing great today. This morning she was able to have the drain tube into her stomach removed, giving her some more freedom (everyone say “Brave Heart”, which I can’t wait for her to get older to watch with us). Tangent, sorry. So she had a very special visitor today; Mommy! Mom brought her a gift from “Colorado Karen” that Maddie was having a ton of fun with (picture, above). Maddie also got a fruit basket from Gram Judy and looks forward to every day opening a gift that has been previously sent by her class room mom, Mrs. Law. So far she has opened some classic literature (The Wind and the Willows, which we started reading today, and Black Beauty), and some cool pencils. Maddie feels nauseous once in awhile without the stomach pump, however, seems to navigate through it to the treats. Daddy had a good chance to get some work done today and return phone calls, as well as treasure the visit from Diane. So still not allowed to eat or drink until the bowels start their engines, which could be by tomorrow. Optimistically she should be home as soon as Friday night, most likely though, over the weekend or on Monday. Maddie has done so much better with this surgery than the last major one 1 ½ years ago in New Brunswick. She has matured and seems to take everything in stride. Thanks to everyone for their support!

Recovering...

Maddie seemed to perform well through her operation, according to her surgeon Dr. Canning. He was able to splice the ureters successfully, requiring about 20 tiny stitches on each side of the tiny tubes. Both ureters contain splints as well. In about ten days the splints come out, the drain port comes out and they will crimp the nephrostemy tube. About ten days after that Maddie will get creatin bloodwork and if it appears the kidneys are draining properly she will be able to “be gone” with the N-tube! Today she also got a superpubic tube, or a catheter for her bladder. This might be there awhile, yet we hope to lose it this summer. It seems, however, that we keep getting “prepped” to have this longer, perhaps real long. Maddie also had an epidural today, which probably helped a great deal not only with the pain, yet also with preventing nausea post op. She woke up almost immediately, and like usual, asked for something to drink right away. Unlike usual, however, she was not allowed (a good thing) because she usually dives into food and drink, only to end up vomiting it all back up after anesthesia. This time she seems to be doing much better, and as I write this, she sleeps. She has so many tubes coming out of her I have been calling her octopus girl, doc oc, and everything else to get a smile back, so far, so good. She has a 9 inch vertical scar from the operation in the middle of her belly. Maddie is much more independent this “go around”, asking the nurses for what she needs, yet not over demanding, and VERY polite so far. Maybe it’s the drugs…;) More later

Surgery update 4.16.07

So I finished up preparing to leave around 2am, with the alarm set at 3. We needed to leave by 3:30 to get to the hospital on time for Maddie’s admission process. With all of the rain on Sunday the Raritan had been rising rapidly through the night. When I returned around 11:30pm, the water was starting to creep up our driveway, making it difficult to get home from work. I contemplated getting Maddie up then and starting out, however, decided to finish up a few things first. When Maddie and I did leave, the water had risen substantially. As we approached the bottom of the driveway, we had to make a decision to either plunge forward through the 2-3 feet of water, or call it off for Maddie and reschedule. We forged forth, enduring just 2 challenging “deep water” sections of road, a detour in Princeton, and once we were on 95 south we sailed down to CHOP, actually making it on time.

As I write this Maddie is now in her 5th hour of surgery. I keep getting reports of closings. Timothy was closed for the kids, Duke Farms closed for the day, Bound Brook, Somerville and Zarephath campus had to be evacuated! A state of emergency declared by acting governor Cody, with Corzine getting his last respiratory surgery today, dozens shot at Virginia Tech...its all crazy, man. Most of the staff at the hospital telling adventurous stories of their arrival to work this morning, or of co-workers that could not make it in at all. Flooding, traffic, trees down everywhere, sounds insane. Maddie and I prayed for people on the way down to the hospital. For those evacuated, for Chris Aquila and his family, who had to leave their home with water claiming their new furniture and possessions, seeking refuge for tonight.

Maddie got admitted immediately, and for about 30 minutes we had a chance to talk and I read some of her new “Babe Ruth” book to her. She started to laugh so much that when the anesthesia team came to see us they were a bit confused, pondering whether or not someone had already given her the “giggle juice” as they call it (she would later confuse them further when she opted NOT to have the mild sedative at all, skipping right to the “funny gas”). About 4 hours into it, a nurse called me to say that so far Maddie was doing fine and the procedure was going well. Today she was having procedures to correct the drainage from her kidneys to the bladder, splicing her right ureter to the left. Dr. Canning was also going to test the bladder and place a superpubic tube in the front. Our hope is that after testing, Maddie will be able to “lose” the nephrostemy tube coming out of her back (currently draining her right kidney). Today she is supposed to have a 7-9 inch vertical incision that will cut through the abdominal muscle, displace the intestines in order to work on the ureters. Her recovery time in the hospital is supposed to be 6-7 days and 3 weeks out of school when she gets home. After full recovery (and hopefully some softball), we will explore Maddie’s bladder issues.

Info & Directions to CHOP

For directions to the Children’s Hospital of Philadelphia, click: http://www.chop.edu/about_chop/mps_drctn.shtml
Maddie is in room 4401, bed #2
phone 215.590.6401
Maddie should be here 6-7 days starting April 16, 2007
Address:
CHOP
34th & Civic Center Blvd
Philadelphia, PA 19104
If you need me you can reach me on my cell (Gene), which you have already

Her special day!

Maddie had the time of her life on Saturday April 14th as she spent the day with the girls from Penn Softball. With an effort led by senior 3rd baseman Julia Cheney, the whole team poured out their hearts to include Maddie during their double header against Cornell. Maddie truly enjoyed every moment from when we stepped out of the car until we left. She was tickled to “warm up” with the players, practicing her “pitch” until she actually threw the first ceremonial pitch to get things started. Before the first game the team sported Maddie with a Penn softball shirt, complete with her name on the back, a softball signed by the team, a program that included a picture of Maddie and more. During the game they treated Maddie like a true “pal” and let her hang out in the dug out with them.


After the first game (and a tough loss) the girls shook it off and took time to celebrate Maddie’s birthday, belated due to a rain out the week previous, complete with cake and singing. It was nice to meet some of the parents, who were also very supportive. I particularly enjoyed the opportunity to talk a little more with Jim Cheney, who had flown in all the way from Washington state to catch his daughter for a couple of games. Maddie then wanted to stay for the second game of the day and I am so glad we did. The Quakers defeated Cornell this time and Maddie got to be a part of it. She ran down the foul line with the rest of the team between innings and just seemed to eat up the commodore and spirit in the dug out. A couple of times she came out of the trenches to play tag with Mr. Leahy and her friends & siblings, or to “hit a few” with Daddy.

After the second game the seniors were recognized with a ceremony and presented with flowers. Every one of them gave Maddie the recognition of a high, low or backward “five” or “knuckles”. Accompanying Maddie were Mom & Dad, siblings Sydney, Joshua, Abigail, Christopher & Gabrielle. Also friends Calen & Maggie Leahy with their dad Mike, and Jenna & Megan Collier. We all enjoyed having the sun with us for the day, and getting to know some of the players, parents, trainers and coaches. On the way home we stopped for dinner at Friendly’s in NE Philly. What a day! The only thing that would have made it better would have been if “Miss Kym” could have joined us. She continues to recuperate from her surgery the Monday previous, and we continue to pray for her. Maddie and Mommy sent her a leopard print “pajama-gram” to cheer her up. Thanks again to the wonderful women of softball at Penn! From the Coaches to the players, trainers, parents…everyone made such an amazing effort, God’s grace was definitely displayed through them all. Pictures of the game to follow…

The Daily Pennsylvanian

Hope Diamond
A meeting on the Penn softball field helps confront adversity off of it By Zach Klitzman

Posted: 4/3/07
Maddie Huntington, who turns eight tomorrow, has had health problems since birth. Her kidneys do not properly feed into the bladder, so she is required to wear a nephrostemy pouch around her back to help with draining.

Kym Rohn-Taylor, known as Ms. Kym, is an Allied Barton security guard who works at Franklin Field. She tries to memorize every athlete's name who walks through the gates. She also has health issues and will be having breast-cancer surgery later this month.

Julia Cheney, a senior and third baseman on the Penn softball team, has had no such troubles. But when she learned of Maddie's story through Rohn-Taylor, Cheney and her teammates decided to honor Maddie on her birthday by making her the guest of honor at tomorrow's afternoon doubleheader against Temple.

"We decided to set up a little something to welcome her as our special guest," Cheney said. "She's throwing out the first pitch. … We'll see if she can join us in dugout for inning or two, and maybe be the bat girl. We're just trying to make her feel included."

Other festivities will include welcoming Maddie and Ms. Kym with a spoken introduction, a special tailgate in between the games, and a rendition of "Happy Birthday." The team also specially made a shirt that carries her name and "Penn Softball" on the back. In addition, as word spread of this event, several other Penn sports teams donated memorabilia for Rohn-Taylor to give to Maddie, including hats, shirts and even stuffed animals.

So how did it all start? The answer is that quintessential Philadelphia item: a cheesesteak.

On March 14, "we had about an hour and a half before an appointment at" Children's Hospital of Pennsylvania, Maddie's father, Gene Huntington, said. "Usually she can't eat beforehand because of her procedure. This time she could eat, and so I told her she could get her first cheesesteak hoagie. We were right by Franklin Field and she wanted to go in there to eat."

The Huntingtons then saw Rohn-Taylor sitting on bench, who admits: "I was feeling sorry for myself," since she was worrying about her illness. "I saw this little girl who was sitting there with her dad," Rohn-Taylor said. "I started talking to her and that's when I found out she has had health problems from a young age.

I also learned that she really liked softball, as well as Madonna, among other things. Although I couldn't give her Madonna, I knew I could introduce her to some softball players.

"Unfortunately, she didn't have time to do so. Instead I gave her a Penn T-shirt … and a media guide. After her operation her dad called and told me she didn't take that Penn shirt off the whole night."

The softball team's newest fan would also make an impression on her role models.

Although Cheney didn't have time to meet Maddie that first day, she was impressed by the girl when she heard her story.

"This is a unique opportunity," Cheney said. "When someone comes up to you and says they met Penn softball's biggest fan, that's not something you hear very often, especially at this school. To hear that there's someone out there that really looks up to us makes us excited."

About a week later Huntington, Rohn-Taylor and Cheney realized that there was a softball game on Maddie's birthday. After softball coach Leslie King gave the okay, Cheney personally set up the festivities that will take place tomorrow.

"That the softball team was willing to do this; I just thought was a blessing," Rohn-Taylor said. "They're not just committed to sports and academics, but also to the community and helping a little girl. It also gives me a good chance to do something for someone else and not concentrate on myself."

Maddie's looking forward to what "could be her best birthday ever," as her father describes it.

"I'm really excited to watch the softball game," Maddie said. "I love softball because it's a very fun sport and I love to hit balls."

For the softball team, it's another reason to get psyched for a city rival game.

"We haven't had problems focusing," Cheney said. "But this definitely gives us extra motivation. We want to win these games for Maddie, even though it sounds clichéd."

Cliché or not, the team will let a young girl live her dream. And bum kidneys can't stop that.


--------------------------------------------------------------------------------
© Copyright 2007 The Daily Pennsylvanian

Happy Birthday Maddie!

Happy Birthday Maddie! 8 years old already, wow. Sorry the game is cancelled today, however, we will celebrate anyway! We love you!
Love,
Mommy & Daddy & the gang

Surgery Update from Gene

Family and friends (and NEW friends too!), as promised, and with much help from friends, we have successfully launched Maddie's blog, in hopes to provide updates that are interactive a bit for Maddie as well. If you can, please try and give Maddie a message once in awhile, I plan to get her some "site time" occasionally for encouragement. Well as most of you know, Maddie has had to fight for her "right" to be here since she was born. We give thanks to God for her progress and her determination. Maddie's next surgery will be on Monday, April 16th. This operation is meant to correct the drainage from her kidneys to her bladder. Her right ureter will be spliced to her left ureter in hopes to improve drainage, and then in hopes to "lose the bag", or the nephrostemy tube that comes out of her back currently. It does not seem to slow her down though, she is playing softball and plays pretty well around the yard, on the bike, in the fort, etc. Since the nephrostemy tube has been placed (January), her kidneys have stopped decrease in function, a very good sign that this next surgery will help. She is supposed to be in the hospital (Children's hospital of Philadelphia, or CHOP) for about 7 days. She will have quite a lenghthy vertical abdominal incision that will run perpendicular to her horizontal scar, perhaps producing an upside down "cross". After the ureter surgery she will have to have some attention to her bladder, and perhaps more reconstructive bladder surgery. We hope and pray that she will not have to endure a permanent catheter. Maddie has done so well through all of this. Tomorrow she is supposed to go to the Penn/Temple softball game (on her birthday) and the Penn girls are going out of their way to make it very special for her. Okay, so how did this awesomeness happen? A few weeks ago Maddie had an appointment at CHOP. Usually she cannot eat anything, however, this time she could, and we were there early so I took her out to get her first Philly cheese steak (on the street, of course). After we purchased our fine hoagie, we searched for a good spot to eat. Maddie chose Franklin Stadium, because she saw the field and Penn lacrosse athletes warming up. We kind of just "walked in" through an entrance under construction. We had just sat down to eat, when we were paid a visit by "Miss Kym",a security officer at the stadium. I figured this meant we would have to leave, however, something quite interesting would take place next. Instead of "booting us out", Miss Kym took a seat next to Maddie, asking her, "so what brings you here today?". Then Maddie and Kym began a dialog of conversation that "beautiful" comes short in description. They have a lot in common, some health history similarities, Kym's mother is Madeline, cancer, etc. Before I knew what was happening, Maddie had met some of the women's lacrosse players and had a promise to meet the softball team (WOW, Maddie was pretty into that!). A few days later, Julia, from the softball team called to confirm that they would like to have Maddie down for the Penn/Temple game on Maddie's birthday, make a cake for her, get to throw the first pitch...the works! We are so grateful, we could not have planned such a great party! Well we are hoping for good weather tomorrow, Maddie is bringing some of her friends and Miss Kym will be there. Thank you Miss Kym, you are a blessing!

Maddie is a cool little kid- from Josh

Hey maddie,
It's really cool the way that you can hang in there during this and still have a good attitude. you're really tough, little sister

whoopie!

hey maddie
you're a toughy. hang in there kiddo!
you go sis.
love, Sydney