thank god she is a warrior...

madison picked this in the toy box after winning bingo!

Talked with Dr. Levitt. They have decided to take her off of her TPN & Lipids as she is not really interested in the offer to have clear liquids today. They will pull the "food line" tonight and hope that she will be more interested in jello, juice and water. The x-ray will be repeated in the morning. I got the impression that Dr. Levitt and Pena are both thinking that it will be liquids again tomorrow based on today's x-ray. We will start foods when the x-ray is clear and there is no distention. The plan is that we will stay in the hospital a few days after she starts eating but that he does not want us to leave town until next week - mid to end of the week. It is frustrating as we are stir crazy but Jed and I both agree that leaving before she is ready would be crazy.

Talked a little about what the next few weeks and months will look like for Madison as we try to get to the end of this journey. I will post all of those detail when I have a second. Please continue to pray these next few days as some big milestones will need to happen in order to determine what course we will take from here. I will fill you in on all the details soon.

Pray on for this sweet girl!

Nikki

It's a "no go" on food...

After the traumatizing PICC sterile change last night.

Every time that they access her PICC we all have to wear masks and gloves because the line goes directly to her heart. They said that if just one person coughed over the line as they change it she could get an infection. Crazy to think about.

last night they took all of the tape off and it was no fun. Took 4 of us to hold her down. I think that at this point it is more the fear of the unknown! She was so tired and sweaty after we were done.

This is what teh PICC looks like before they bandage it all up.

The round disc is where the tubing goes through the skin. the disc is full of antibiotics that keep the area totally clean and sterile.

First liquids since last Tuesday!!

Coloring...passing the time. Isn't she a doll!

hello all.... Just wanted to update you all. We had our x-ray at 7 AM this morning. Got the results back from the nurse practitioner that she was a little distended and that they would not allow food yet. Dr. Levitt oked juice and jello today so we can see how that goes. We should see Dr. Levitt anytime and he will be able to give us a better idea of where we stand. There are allot of people that come through and all seem to have just a little different info. I always just wait and get it straight from Dr. Levitt. I will try to see if he can give me a better idea of what his plans will be for her once she starts eating. Will she have to stick around to make sure that we do not have constipation issues still...ect.



Madison seems to be a little less aggravated and frustrated today. She had a good night sleep. Seems to feel rested. We have already played cards, visited the playroom, read books and she is now sitting on the floor(not sure how she does it after seeing the surg pictures!!) coloring in a great activity book from one of her favorite people in the world, Mrs. Jungles. We are jammin to Hannah Montana and as soon as the clock hits 2 she will inform me that the play room is open again!



Today we had a nice meeting with a gal named Maggie. She is a representative for a new group here at the hospital called Champions. It is a group that helps the hospital through sharing their stories. She came and "interviewed" me and Madison on video camera for about an hour. A really sweet lady and a good chance to share just how thankful we are for Cincinnati Children's and especially Dr. Levitt. I always feel my eyes well up with tears when I talk about him. He has impacted our lives in a way unlike anyone else before. How do you ever say thank you for that.



Jed and I have had several conversations since being here about how we can give back to CCH. We have talked about different ideas... how can we specifically help the colorectal center? maybe for now just sharing our story. there seems to be lots of possibilities coming our way with the Kids Wish Network, possible article in the magazine here and now with Champions. It would bless my soul to be able talk to others that are in the same place we were just a few months ago. I was telling Maggie that as hard as the last few years have been, maybe, just maybe, it better prepared us to share with others who are so desperately looking for answers.



Have you ever been so passionate about something or someone that you want to stand and shout with a megaphone. That is what Jed and I feel for this place and Dr. Levitt. I laughed as I thought about all of the other hospital stays we have had. I always am thinking...how much is this one gonna cost us! You know that never once has that crossed my mind here. I would sell my car, stop shopping (OUCH!) whatever it took to be here...and then still want to find ways to do more. Maybe I am just in the thick of all of the emotions right now... We will see. We will look for opportunities to share and help where we can!



Thank you to all who once again sent packages! We received another bundle today! The Elliotts, Schlesselmans, Tessendorfs, and Gma & Gpa Smith. She is busy doing crafts from all of the new goodies as we speak now!



We will keep you posted on the food front as we get more info.

nikki

Another Good Day.

Madison & Malory

Another good day so far! Madison slept great! No interruptions big enough to wake her up. Jed and I did ok too! It was a little tight....good thing we love each other! This would be the worst kind of therapy for a marriage on the rocks!!

Talked to Dr. Levitt. He said that we will do the xray tomorrow and if all looks good he will possibly allow her to drink something tomorrow night. Then start with food on Thursday. We have been trying to get some info as to how long after eatingbefore she will be sent home. We were old today that since she was admitted for constipation they will probably make her stay a few days after eating to make sure that we are not still having issues. UUUGGGHH... only time will tell. We definitely do not want to go before she is ready and have to come back. We will just have to take it a day at a time and see.

Trying to stay a little lower key today then yesterday. She got really nasty last night (attitude)and I think that it was because we just did to much. We will try to space out breaks and activity a little better today and see how that goes. She has been a little aggravated the last little bit and I am not sure if that is just her frustration or her way of "coping" with all that is going on. She had an emotional breakdown this morning because "I want to wear real clothes". The nurse practitioner helped us through that little breakdown! It is hard for her to understand that they really can not disconnect her PICC lines everyday. We did is last night for the first time since she got it last Tues. I attempted to give her a sponge bath and wash her hair...I think she thought that it could be the norm.

Overall she is doing great. She is such a trooper and has more willpower then anyone I know. She announced last night that she just really wants us all to be together all the time and that she would rather we eat in the room with her and not take turns leaving. She informed us that she would just try really hard to not think about how good it smells. I asked if she was sure as we were fine eating in shifts and she said "no, stay here". I looked over while we were eating (backs to her.... we really are not cruel) and she had all of her animals forming a wall so she could not see and then had her blankie bear over her nose. It was so cute! Today when we brought lunch in it did not even phase her! Can you imagine.....she is amazing!

Had a few really fun surprises today. First - as I was heading up to the playroom this morning to meet Jed and Maddie I ran into a traffic jam.... a whole group here to see Madison! My moms cousins Renne Reimer and Nancy Maillefer and Renee's 6 kids and mother-in-law! Renee has a 16 year old boy, 15 year old boy, 13 year old triplet boys and then one sweet little 9 year old girl! I have not seen Renee in years....they live about an hour away. How sweet to have them come stop by!

A few minutes after they left my cell phone rang and it was Charmaine Balmer from Freeport. Their family was in Cincinnati heading to North Carolina for vacation and wanted to stop by. Mark is our pastor in Freeport. Their youngest Malory was in preschool with Madison! Madison was so excited!!! They played together for a long time... The first person that Madison has played with her age in weeks! A funny thing that happened too.... this morning the Reimers gave her a sweet present with Pet Shop items. A house and some fun animals. We have never had pet shop toys before so she was excited to get them out! Malory shows up and hands Madison a present of PET SHOP animals. It was so cute and the timing was so bizarre!

More mail today from Grandpa& Grandma Smith and Aunt Rachel and Uncle Nik. Thanks!! She loves it!

I need to get her up and moving to the playroom before they close... we will take it easy tonight. Jed will have dinner with a friend that is in town on business and stay at the Marriott with him....I am thinking he did not really love the "extreme" closeness in our bungalow last night! Maddie and I will probably have a date on the roof of D2. Just us and some TPN & Lipid cocktails!

I will keep you posted as we get new info!

Nikki

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