magic butt cream....

Here it is... This is the "medical name" for the new prescription that we picked up today! The girls think that it is so funny!! They just keep giggling and laughing! I am not sure if it is Dr. Levitt's secret formula or what... the pharmacy called and said they had to order some dry ingredients to mix us a special cream that was called in!?

We will see how it works!!! Fingers are crossed!

Bad news and good news:
Bad news first....
Booty rash is still flaring its ugly face.... she is miserable. Had to call Cincinnati today to get some different medicine as it is getting so bad that she can hardly function. She does not want to sit or walk and cries about how bad it hurts all day. Every diaper change is a fight. We have resorted to a bath after every dirty diaper....she has had about 20 baths in 48 hours! Today she started to scream when the water would hit the sores.... I am not sure what else to do.
The nurse in Cincinnati said that because her colon is moving faster now as there is less “road to travel” the body does not get rid of enough of a bio-salt ( I am not sure that is the correct name...some sort of salt though.) The salt reeks havoc on the booty..... and the cycle begins.
So in a nut shell the bad news is that Madison HAS a real pain in her butt!
Good news....
Because Madison is so miserable I am trying to “catch” as many poops on the potty as possible to avoid having it in her diaper. I have had her sit on the pot 3 different times for about 5 minutes today. Each time she pooped!!! I am still not sure that she is feeling it. But as long I can get her to sit and she can relax we are having luck, at least for today! We will consider this a step in the right direction. We all needed a little encouragement.
Last night was hard. I have not seen Jed cry since they wheeled Maddie away for surgery, until last night. Madison had a breakdown about how its all not fair...Jed was telling me that she had said that she is the only one in her family that gets sick, the only one in her family that wears diapers and then he began to get choked up as he said that she said... 5 years old are not supposed to wear diapers dad. So there we sat in the dark on the deck crying..... I guess those times will come on occasion. We are thankful for the small victories today. Thank you Lord for giving us a glimpse of hope in a time that it was desperately needed.

starfield.....

Madison went with Jed a little less then a year ago to her first concert! Starfield was playing at Park Hills church. Madison LOVED it. I will go as far as to say that she had her first crush. She came home with an autographed picture of all of the band. I had to have it laminated because it went everywhere with us! A few days after the concert she came into my room early in the morning. I was sound asleep. She woke me up and said “ mom how do you spell marry me?” I looked over and I saw that she had copied one of the guys names and was writing him a letter. She has good taste, he was the cutest one! I asked what she was doing as she ran off giggling!
You can only imagine the excitement when she saw this years summerwood schedule and there was Starfield!!! We marked all of the calendars in the house and COMMITTED to be there. Then we learned about her surgery..... several times she told doctors that she had to be home for the concert. We started to get worried towards the end of the stay that we would not make it back.
We got home with 48 hours to spare! The Smith family was at the concert. Madison was in heaven... She listened and sang! She smiled for 2 hours straight! Olivia was not so entertained.... at one point she looked at me and yelled, literally, as it was soooo loud in there, “do you want to play I spy with my little eye?”. I laughed and told here we would have to wait until after the music stopped.
When the concert was over we made a b-line for the merchandise table. Madison asked for the poster and I convinced her that she needed the whole set...cd, t-shirt and poster! Give me a break.... you would do the same thing if your child just went through all that she has....
We waited in line for the autographs and she was so excited.... she was bouncing all over the place. When we got up to the table they asked if she liked the concert. She replied with a very quick YES! When they asked what her name was she responded with a little bit of annoyance in her voice .... “Madison, but you already know me from the first concert”.! I died... they looked at me for a little back up. I quickly said.... yeah at park Hills in Freeport last year. To that they responded, O yeah...how are you Madison!!!!
Jed and I died! As we were walking to the car she said “ I need to add them to my birthday party list. I want them to sing at my party”. I told her that we would get daddy right on that!!!

where did it go????

I have to share this funny story that happened while we were at the RMH. Madison was discharged a week ago today. We were instructed that she needed to be given her Flagyl for the c-diff every 6 hours no matter when it falls. You can imagine her enthusiasm when we would wake her up in the middle of the night to stick a syringe in her mouth. On Monday it was hot and stormy. We all crawled into the same full size bed because we were so excited to be together! As Jed and Maddie faded off into a deep sleep I listened to the nasty storm brewing outside. The deeper they slept the more the storm flared its anger.... I was a little annoyed to because I could not sleep. At about 1AM the power went off.....pitch black but more importantly ....NO FAN. Now I was really annoyed. Jed and Maddie were not bothered a bit. I laid in bed listening to all the kids in the hallways crying, parents trying to help kids calm down. After 3 hours of this Jed's cell phone alarm clock went off. The only person that budged was me.... I used the cell phone light to stumble to the refrigerator and get out the meds... I filled the syringe as best as I could tell to 5.6 mil and began to try and “administer” the drugs. Madison began kicking and screaming so I just laid across her arms and legs and shot it in her mouth. We had done this the few nights before and she never remembered in the morning. I hated being so mean but found slight peace in knowing that she would not remember. She rolled over and went right back to bed.
The next morning we all woke up to get ready to head to the hospital by 7 AM. After a few minutes of being awake Madison made a large gasp... I went right to her and could see the confusion in her eyes. She looked at me with her tongue sticking straight through a gapping hole in her mouth.... “where did my tooth go?”. I was in shock.....last night it was there. We had mentioned that it was getting loose. I looked through the bed, no tooth. On the floor, no tooth...... Then I looked on the counter and all of the pieces came together. A bloody syringe lay on the counter. Crime solved: aggressive mother knocks child's tooth out while administering drugs in the middle of a power outage...... I was in shock!
Later that morning we were sitting in Dr. Levitt office. I jokingly asked if he could see a missing tooth in her belly. He pulled out the x-ray and there it was....plain as day! So the following pictures are of the tooth INSIDE Madison as well as the note that Dr. Levitt wrote for the tooth fairy!

how do you say thank you enough...

I am so thankful for all of the dear family and friends that the Lord has blessed us with.
Here are just a few ways that you have all blessed our family.
*My mom and friend that spot cleaned our house
*The family that loaded our house with groceries and had a breakfast casserole waiting
*The dear woman that brought a dinner, waiting in the fridge last night with gifts for the kids and a basket of snacks
*The many many that have sent cards and gifts to the hospital for Madison and Jed and I
*Those that felt led to give us cash to help offset the costs that are coming our way
*The flowers that were given and placed in every single room of our house waiting our arrival
*The yard that was mowed
*The “dog sitters”!
* The plant waterer's
*The sister that became a 2nd mom for weeks on end to our sweet Olivia
*The relatives that travel hours out of their way to support us during surgery
*The surprise visits from pastors and friends
*The calls to encourage us during our stay
*The support through comments on the blog
*And all of the others that I am forgetting......
Thank you, Thank you from the bottom of my heart!!

We are back!!!

Our sweet girl!

Home Sweet Home!!
It is so good to be in our normal environment again! We had a good trip home yesterday. It is a long drive from Danielle and Ted's house but we did it!! We made allot of stops.... Olivia drank a few to many juice boxes and Madison's meds kicked into high gear!

We are thrilled that Madison is having some success with emptying her bowels. She claims that she is not having any sensation at all which is still a little disappointing. We had some blow outs yesterday and it is hard to believe that one would “not feel that”. We totally believe her though as that has been the case in the past. We will give it time and see if we progress in the right direction.

Madison is such a trooper.... It has been hard the last few days when she has made different comments about “her condition”. Yesterday morning I had laid both of the girls clothes out on the couch for them to get dressed. Madison looked at the pile and got teary and said... “It is not fair that Olivia has undies and I have a diaper, you told me that my surgery would fix me.” The only response that I could think of quickly was (sorry to all you men that are reading!) “you know mommy wore diapers too after I was in the hospital when you were born. Most people who go to the hospital have to wear diapers for a little while until they get better” She gave me a funny look and then said “ its not fair!”. So today she is in big girl undies.... she asked if she could try and I did not have the heart to say no. What is a little extra laundry right! The other thing that has been difficult is all of the meds that she is still on. The Flagyl for the C-diff, which taste NASTY and the daily ex-lax. I was giving her the meds yesterday and she again said “ you told me the surgery would make me not need medicine” It has been hard to know what to say... You know before the surgery we were trying to help her understand it all. What do you say to your five year old that through tears before getting an enema says “ why did God make me different?” GULP. I called my mom sobbing..... How do you even answer that? A sweet little girl that would come home from school and cry because “the teacher uses gloves when she changed me, will she get sick from changing me?” You do your best to explain... on a level that makes sense. And then you get to the place that we are now. Broken promises. I have tried to explain that sometimes things get worse before they get better. That Dr. Levitt still believes that she will be totally “normal”, to one degree or another in the months to come. But I can not make promises anymore. So for now we say... “Isn't it great that you only take one ex-lax instead of 5, or lets wear the big girl undies and see how we do. “ We are focusing on the small victories and trying to help her understand that all of this suffering that she has experienced is leading to the place that she hopes to be, in big girl undies and with no meds. And then I pray, asking, maybe even begging God to please make that all true! Please God make her feel “normal”.

She is resilient and her attitude so sweet. Last night she was miserable when I was trying to change her. The girl has a burn so fierce on her booty that it kills to change her. So we were upstairs, tears where flowing and I was trying to tell her that it would not hurt!!?? ( that probably falls under the broken promises category... I am still learning!) She looked at me and said “ you do not know what my body feels like”........... Ok, so you got me there. She finally allowed me to clean her up. Don and Jody Sullins had snuck in and were in the kitchen making a breakfast casserole for us. Madison really wanted to see them. We finished upstairs, I held her as she whimpered. We came down stairs and through the tear stained face she glowed! She told of pranks that she played on me in the hospital, funny tooth stories, bad memories and she just lite up! That sweet child has the strength of a champion!

She will make it, we all will – no matter what road we have to take to get to the final destination.
So today we will just reconnect with life... life as we once knew it 25 days ago! We are all in pj's. The girls are making a fort out of boxes in the living room. Jed is putting out fires in his office... making calls and returning emails. I am cherishing my time at the window seat, drinking coffee and reflecting on the last chapter of our lives. I need to journey next. Put some of the raw emotion on paper so that one day I can look back and see how God put all of the pieces together.

A pastor once told me the following story in another very difficult season of life after having our miscarriage. He asked me to think about my life as a beautiful cross stitch in the making, reminding me that I can only see the “project” from an earthly perspective. A view that is looking up on the underneath of the final masterpiece. You know what the bottom of a cross stitch looks like, especially if I am the artist... underneath there are loose strings, knots and sometimes awful messes..... But God is looking on the final piece from the top, where the beauty is, where the messy bottom creates a beautiful finished project. I will not see the “topside” until eternity when I can see my whole life, all of the pieces together. I know that is true for Madison too. One day she will see the masterpiece and will understand why all of these loose strings and knots happened. How it shaped her into the final masterpiece that God intended.

You know I have so much to be thankful for. I am most thankful for the day to day craziness that happens in all homes with kids! I have started doing dishes, cleaning up toys, laundry and breaking up fights(!) after several weeks of not doing so. It at times seems like a pain, but for now, I will consider it a blessing. I have 2 kids that are here with me, an amazing husband, great friends and a beautiful home. I will hold on to this and be thankful for life just the way that it is. I know that the outcome could be different. The Lord protected Madison time and time again. The more I read about her infection the more thankful I am that she is ok. It is a serious matter and many times the outcome can be grim..... I am thankful.

Tuesday morning as I was checking out at the Ronald McDonald House their phone rang. It was a social worker from the hospital. She was calling to ask them to take a certain family off of the waiting list for housing. I heard the woman in front of me say that she was sorry. When she hung up the phone she turned a few pages in her binder and wrote across the top of a page “ social worker called to remove name from the list. Child died last night 7/21/09.” We looked at each other, not sure what to say. She just whispered...”this is the hardest part about this job”. I paid my money and cried the whole way to the car. Never, ever will I forget that there are people that would trade places with me in a nanosecond. Why did it not go the way that it is supposed to for that dear family. They left with an empty car seat, with empty arms and worse yet hearts that must hurt....physically ache from being so empty. Thank you God for giving us a different outcome.

Updates....

The hospital that we love....
The Doctor we adore!
getting a ticket out of here!
Thanks Ronald McDonald House!!!

crashed at Ted and Danielle's....trying to recover!

Ok.... After blogging several times a day I feel like I am behind! Here is what has happened:

left the hospital last night and took Maddie out for a fun dinner at Max & Ermas. She had a good time but has really no appetite. Maybe ate a quarter of a grilled cheese.... hopefully that will get better as she starts to feel more like herself. Got back to the RMH and let her play in the garden and play yard. It is absolutely beautiful. On of the local landscapers in Cincinnati takes care of it for the house. probably one of the most relaxing play yards i have even been in! What a great break for all of us!

Went to bed at 9! We were all exhausted! Took about a minute before I heard 2 others snoring!! Had a HUGE storm come through and the power went off for 4 hours! I was restless but thankful that Maddie and Jed both slept well.

Got up early this morning so that we could be at the hospital at 7 to get Madison's x-ray before the appointment with Levitt. Had a really good meeting with Dr. Levitt. What an amazing man! He gave us the run down on what is ahead. Said that her xray looked really good. We were kinda surprised as she does not seem to be going as much as we had expected.....suppose that it could just be that she is not eating a ton. Dr. Levitt said that he would like to see her taking no more than half a square of the ex-lax by the end of the month. We were thrilled to hear that. Talked at length about the C Diff. He said that the common denominator in the patients that get it is a slow moving colon.... obviously Mads fits in that category. It is still contagious so we will need to take allot of precautions so that it does not get passed around. they gave us some good tips, so we will take all of those very seriously. We have been instructed that if she begins vomiting or has a fever over 100.5 that she needs to go right to the hospital. We have been informed just how serious this infection is and that the consequences of not keeping it under control can be very extreme. In cases that it can not be controlled, the infected colon is removed. PLEASE pray that these anti-biotic work!!

We arrived at Danielle and Teds this afternoon about 3. We surprised Olivia! She was sooooo excited! Madison has been sleeping for about an hour and will hopefully get caught up a little. She feels warm so we are keeping close tabs on her temp. she is holding right at 99 but is sweating like a pickle..... not sure what that is all about. I am sure that i am a little jumpy after being given all of the risks.

Madison and I will be back in 3 weeks for an exam with Dr. Levitt. That will hopefully be the end of the road for her. Dr. Levitt was so sweet today and said that he was sad that our journey with him was coming to an end. We have really bonded. I am sure that he can see the gratitude that we feel for him and how he has changed our lives. I wish that we could pack him up and bring him with us. I gave him a big hug and thanked him again as we were leaving.... I was looking for the word to express my appreciation for what he has done for us. What do you say to a man that has changed the quality of your child's life forever???? I felt the tears coming so I did not say much....

We plan on crashing her tonight and tomorrow just to make sure that everything is ok with Mads before heading home on Thursday.

Please continue to pray for Madison's full recovery. Her biggest pain right now is related to and awful rash/burn on her bottom from the anti-biotic. We just picked up her prescription for that...hopefully she will get some quick relief.

thank you all for the support these last few weeks..... It has been such a blessing! We will continue to update the blog as we settle back into life at home and get Madison back to full swing!

Nikki