I've Got Mail!

Thanks to all of you that sent goodies in the mail! Today we received quite the stack!

Crafts from the Knudson & Rookes

A letter from Madison's dog Libby! She is showing the picture to everyone!

A letter from Tri-County Christian

Boy is she loved!!! Thanks to all of you for all that you are doing to show us so much kindness!!!

Nikki

What's for dinner??

TPN & LIPIDS!!!!

So what exactly is Maddie getting???? Here it is!

Bon appetit!

Lipids.. this bottle is a whoppin 1000 calories!

Essential fatty acids TPN - Total Parenteral Nutrition
liquid meat and potatoes!

Great day so far

playing outside
looking over the rooftop fence at the view outside!

She said " I have so much good energies since I have been in bed for weeks"!

Playing outside... a little difficult with all the "equipment"
Resting up for BINGO!

Today has been a great day. Madison is feeling really good. We have been given permission to roam free in the hospital. She is having fun roaming the first floor....gift shop, library... you name it she wants to check it out. We found a great outdoor rooftop playground for patients only. We had fun out there, did some coloring and a game of war.



She has been a little more aware of the whole "food' issue today. The best was when we were waiting for the elevators and the door opens and there stands a guy with a huge cafeteria tray of chicken fingers and French fries...can you imagine the look in her eyes? I jumped in front of her trying to block her few and some of the aroma. They then "invite us in" assuring them us that there is plenty of room. I kindly say that we will wait and they again invite us in... I looked at he guy and mouth... she will want to eat your food! He apologizes and the doors close. Madison looks up at us and says " I am really hungry for some chicken"! Jed and I died laughing and she pouted...it only lasted a few minutes! She has decided that she wants her first meal to be pancakes! We will see what we can do! Sounds like a pretty mild food to start with!



We are taking a quick break and then are off to BINGO in the child life room. They say that it is always a full house!



We still have not been able to get into the Ronald McDonald House. We decided today that we would check out of the hotel today and all start bunking here to save money as we were using the hotel so little. We will report in on how it goes.... Madison is pretty excited that we will all be together!



A specific prayer request is that Madison would start passing gas. Her belly is looking pretty distended and it can only be because of gas. If that does not change we will not get the ok to eat on Thursday. We needed her "tooted out" by Wed when we get the xray!



Thanks for your continued prayers, your post of encouragements, email and your mail! Madison, Jed and I are sooooo thankful for our AMAZING support system! We are blessed.

A special lady!

Aunt Miriam

I think that I have been asked maybe 20 times these last few month..."how did you hear of us". I always explain the story.

Do you all know how it happened? For over 3 years we have been looking for answers, answers that we could live with. Not that we were looking for the easy way out, we just needed to feel like there was a light at the end of the tunnel.

For years we had heard remarks such as:
** "she need to see a poop psychologist...it is all in her head"
**"she may just have to be in diapers until she is 12, that's not all that uncommon with kids like this"
** " lets try doubling that medicine one more time and see if that works"
**" go ahead and add 3 TBL of mineral oil a day to her miralax"
** "I guess we can do a colon biopsy if that would put your mind at ease"
**"try 3 enemas today and then follow with enemas every hour until she passes the blockage"
and here is my favorite!!
** "I will get you some gloves and you can try to dis-impact her!" that was from the ER doctor at 2 AM when Maddie was thrashing in pain after not pooing in 14 days, even while taking her meds. I had a few ideas for him, however I am trying to keep this blog family friendly so I will not share!

do I need to continue... for years we have been frustrated, at times even questioning if we were just the worlds worst toilet trainers. Thank god Olivia just woke up one day and decided to poop in the big girl potty. It made us realize just how different sweet Maddie's bowels were.

In January I had just returned from UW in Madison. We had that biopsy done to make "us feel better" as well as several other tests. The test all came back normal and we were told to give more meds and follow up with them in a year...and "make sure that you find a good poop psychologist". For all of you laughing ... they really do exist!

Jed and I had talked ( we had lots of time for that while he was on his back from his Achilles surgery that same month!) and knew that if this set of test came back normal that we had hit a brick wall and had nowhere else to turn. The day that I got that call...the one that said she is normal, lets just help her figure out that it really doesn't have to hurt to poop and all will be ok, I bawled my eyes out. What now? I was afraid. Afraid to up meds, afraid that she would be in special ed classes because she would continue to have explosive blow outs daily ( I am talking explosive....poop in hair and sometimes even full tennis shoes) how will she have sleep overs, swim in pools...the list goes on. I called my dear friend, Aunt Miriam to vent. Miriam was a pediatric gastro nurse for years so I was always running things by her. I could tell that she was unsettled with the diagnosis as well. She assured me that she would do some looking- specifically on the med dosages and get back to me.

Later that night Miriam emailed me a whole list of websites to check out. She had specifically highlighted a site that she thought would interest me of some man in Cincinnati. It was a powerpoint video presentation of Dr. Levitt. I will never forget watching that video as long as I live. Since that night in January I KNEW that Dr. Marc Levitt was our answer. I was not sure how the details would work out, but, I knew that as soon as the clock struck 9 the next morning I would began the process of finding out.

And that is just what happened. Weeks of gathering medical charts, phone conversations, begging to be seen asap and not have wait on long lists. Can you believe that this dear man and his partner are THE ONLY Dr.s in the WORLD running a pediatric Colorectal Clinic.

We have been under the care of Dr. Levitt since May. For the first time in almost 4 years Maddie is interested in food. She has no dark circles under her eyes from nasty toxic build up, she sleeps great, she can button her pants, her belly is not distended, she is full of energy and most importantly....she knows when she has to go potty, she goes, has no accidents and EMPTIES that colon everyday. Even though all of that was done with large doses of meds.... it is the first time it has worked. (Ironically all of the medicines that we have been on for years past are on Levitt's "never use" list! ) We know that there is still lots of work to do but we can see the light at the end of that once O' so dark tunnel.

So..... how do you thank someone that literally has changed the course of your child's life?

Miriam, if it were not for you ....who knows? Thank you from the bottom of my heart for helping me research and ultimately discovering my favorite Dr. in the world! The hours that you spent on your computer that night in January have changed what the future holds for Madison. Love you!

I know that the Lord has orchestrated every day of Madison life and that He hold her future in His hands. I will never take that for granted. I am so thankful...................

Nikki

It is a good day when sisters are together!

Heading to the playroom

playing doctor

Maddie is doing well. She is a trooper for sure. We are still having major issues with her catheter...it is causing excruciating pain. They believe that it is causing bladder spasms...super painful as the bladder sits right by where the incisions are internally. sounds miserable.

We had to wake her up twice last night to change her diapers and clean her wounds.....it is all I can do to not break down. She just screams. It seems to bother her catheter tube more than even her surgical sight. They have agreed to remove the catheter today instead of tomorrow as that should eliminate allot of the pain issues.

Maddie got up and walked yesterday. We have been having a good time wit Olivia here. We took the girls to the pay room at 2 after a morning of Maddie being pretty uncomfortable. We wheeled her there in the wheelchair and she played for sometime in the wheelchair. It was about 15 minutes before she got frustrated and wanted out to roam free with Olivia. She did good. Pretty unstable on her feet at first but ended up staying on her feet for more than an hour.

We got back to the room and she was exhausted...still did not go to sleep until later last night. We did some crafts in bed until about 10 and then I demanded that we both get sleep so we sang and I rubbed her back...it took a good 20 minutes but she did fall off to sleep.

Toady's assignment from the DR... "lots of farts"! Maddie was so giggle when he said that! I am trying to figure out if there is a way that I can tape her belly sounds to post on here. The two of us got to laughing pretty hard last night as WE were sung to sleep by her stomach....it is so impressive. I will see what I can figure out!

The gang (ted,danielle,jed and O ) will be here soon! Hopefully with a good ol cup of Starbucks...secretly disguised for a desperate mother!! How is it that coffee just makes the day better?!

Thanks for your continued prayers!

Kid's Wish Network, Hero of the Month!

So.... the news that I have been writing to tell you! Madison has been selected to be the Kids Wish Network Hero of the month for November. You can check them out at http://www.kidswishnetwork.org/ . How cool is that!!!

We have also been contacted about Madison being a feature in a magazine that goes out to thousands about Cincinnati Children's Hospital. They are talking about the February issue.... and lastly they would like our family to be interviewed by a local radio station so that our story can be played during the yearly fundraising drive on the big local station. The hospital is so impressed with our story of a 3 year battle with no help and then our excitement in finding their info over the Internet. We could be Dr. Levitt's biggest advocates in the world. He has changed Madison's life forever! Yesterday after surgery I could not help but give him a great big thank you hug!

So... Little Madison could be getting some real recognition in the next year for her courage and her fight against this miserable colon disease. She deserves every ounce of it!

Nik

better days.....

sisters reunited so excited
craft- time
jed playing catch-up!

Yesterday evening seemed to be one of much less pain for Mads. She has even smiled a few times this morning. Today they will try to ween her off of some of the narcotics. They can tell that she is getting gas build up from the pain meds... We need to make sure that her colon is clear for the x-ray day 6 or she will not be allowed to attempt eating. The pain team said that as they take the meds down she will be pretty miserable from post op gas pain but that the only way to get the colon moving is to drop of the narcotics..one of those issues where it has to get worse before it can get better. Pray that her pain is manageable.





Ted and Danielle came with miss Olivia last night. The girls were so sweet together. They painted in bed together. Olivia was so sweet and said " i wish I was the bigger sister so that i could hold Maddie because that would make her feel better".





I went to the hotel last night and slept with Olivia. I got a good solid nine hours sleep so that was a huge blessing. Jed is snoozing after a shorter night here with Maddie. He will take a turn at the hotel tonight.




Thanks for your continued prayers,

Nikki