Never A Dull Moment

Madison once again is keeping us busy! Thursday night she had a date with Jed and then went with him to pick up Olivia at Grandma and Grandpa Smiths house. A few minutes with an exercise band....a game of tug of war..... Olivia decided to let go.... Maddie is rushed to the Er! 4 stitches later we were on our way!

Should be a cheap visit as I am sure her deductible is met for the year!

Never a dull moment! We will have them removed tomorrow!

It's Scheduled

Before surgery....

139.5 ex-lax squares a month, 1,674 squares a year

5 boxes of ex-lax a month, 60 boxes of ex-lax a year!

After surgery.... 0 !!!

So we will be saying goodbye to our third child, "mega-sigmoid", on the 10th of July. We just received word that the surgery is on the books for a July 8th admission and a surgery day of July 10th.

Jed and I both kinda panicked when we saw that as it is only 4 weeks away. We had been anticipating having a fall date as we were warned that mid-summer is not an easy time to get in, especially this late.

We have had a GREAT week this last week with only 2 accidents. X-ray confirmed today that she is staying totally cleaned out!!! I think that having such a great stretch has made us apprehensive about the surgery..is it necessary? So we decide to email the Dr. with some of our concerns. I just laid out for him that we were doing great and that we wanted to make sure that overtime her body would not heal itself or that she could go way down in dosages or best case she would "just figure it out". I sent that email and about 2 minutes later got a response. he wanted to see if he could call real quick so that we could discuss our concerns. A minute later he called....where else do you get that kind of attention??

The first thing that he said was " I could sense concern, anxiety and fear in your email...so i knew we needed to talk'! I told him that I was afraid and excited all at once. He was great and very simply told us that the surgery is not mandatory but necessary for Madison to have a good quality of life. He is THRILLED with the results that Madison is having. He assured us that she will absolutely ALWAYS have to be on this amount of laxative and in the near future a much higher dose. He said that we can continue doing that if we are not comfortable with the surgery. Not really something that we are ok with as there are no studies that show the effects of such high dosages of ex-lax over time. He also shared that most families that opt out of surgery usually come back within the year and have complications or want the surgery.

He also assured us that he colon will never go back to anything close to normal. He was very positive about the size of her upper colon as it is "in great shape". Dr. Levitt said that the first time that he saw her films weeks ago he felt like the only way she would get a good result for life is with surgery.

sooooo....we have decided that this is the way that we will go! we have prayed that if we were supposed to move forward that a date would open this summer that would allow enough time for her to be back "on her feet" before school. This date will do that. Dr. Levitt said that there must have been a cancellation as he was shocked that we got in this soon. He said that he was very excited for Madison that she can get this done soon!

We will start to make arrangements and get all our ducks in a row. There is allot to figure out. Danielle and Ted had offered to take Olivia again so that is great! We are thinking that we will travel to Akron and spend the 4th of July weekend with the Lawver Family. That way we can make sure that Madison has allot of fun and then is rested before being admitted on the 8th. Jed has a call into his boss to make sure that everything is ok for him to be out of the office and working "mobily" for 2 weeks. Our biggest obstacle to overcome right now is lodging. please pray that we can get into the Ronald McDonald house those 2 weeks or so! It is the only thing that is close to the hospital and we both really want to be close as someone will be staying over and the other heading back. The hospital is in the ghetto of Cincinnati and there are no hotels in close proximity. The RMH is on the hospital grounds! You can not get your name on the list until 24 hours before your admission. It is a first come first serve basis..... so please pray, pray, pray!!

We will keep you all posted! Lots of love to all of you and your families!


Nikki

May 30th

Hello everyone! Allot has happened since we last blooged!
First and foremost.... Madison scored her first goal in soccer last night!! She was so excited! She was skipping around the field and missed the next several plays because she was looking at me giving me the thumbs up and saying “ that one was mine mom!” It was so great to see her so happy!
On a funny note - Wed afternoon I look out our kitchen window and see a turtle making its way towards the house.... not a small turtle either.... turns out it is a snapper. Jed shovels it into a bucket as the snapper is “snapping”. The girls both have nightmares and I am awake all night! The turtle stayed over night in a bucket outside waiting for the conservation police. We still have no idea how that thing got here. No real habitat for a snapper on Lacresta Dr???
I have developed an abscess under my left arm that is so painful. I am on antibiotics and hope that it will all clear up otherwise as my dr said “ I will have to take a scalpel to it” So as you can imagine I am praying for the obvious!
Jed turned 31! we had a very romantic dinner at Culvers as he was running out of town at 8:30 pm on his birthday! He had a busy two days in Chicago! He traveled with one of the “big wigs” and got RAVE reviews.... no surprise there! I am so proud of what he has accomplished at this job. He had his review last week and was ranked in the top 2% of the entire company!!!! GO JED! In order to celebrate tomorrow he is pulling the roof of of the garage!!!!! Poor guy never gets any down time!
Jed and I had a long conference call with the surgeon in Ohio on Wed. . We have decided after allot of talking that we need to move forward with the colon resection surgery. Dr. Levitt was of a little different opinion than Dr. Pena as far as the need to “prove” that she has bowel control before being a candid for the surgery. Dr. Levitt believes that she will not get bowel control until after the surgery because her colon and rectum are simply to large. We talked in length about the surgery and what it will in tale. Lots to take in and an unbelievable amount of fear to think about what is ahead for Maddie.... The verse “be anxious for nothing, but in everything, by prayer, and petition, with thanksgiving present your request to God. And the peace of God which transcends all understanding will guard your hearts and your minds in Christ Jesus” keeps coming to mind. So much easier to say then to live. I believe that the Lord will provide the peace that passes all understanding for us in the days ahead. We should know by Monday the available dates for surgery. We are praying that possibly July as that would give Madison enough time to recover for school late august. Dr. Levitt was afraid that they may be booked through the summer so we will see. Again, we trust that the day that is open is the day that the Lord has planned for us. I am not to concerned about it being after school starts as I feel capable of teaching kindergarten for a month or so ! (I think that is the only grade I could do!)
We will keep you all posted as we get more info from Cincinnati. We will have another x-ray on Monday to verify that she is staying clean.
Please pray for Jed and I as we have allot on our plates in making these super critical decisions for Madison. We are begging the Lord to make His plan for Madison so clear for us. We are trusting that He will open and close the doors as He sees fit.
We love you all and can not thank you enough for your thoughts and prayers for our family.
Xoxo,
nikki

GREAT NEWS!!!

Here is what a clean colon looks like!!!???

Dr. Levitt just emailed us back after viewing today's x-ray and said that she is completely clean. He said that it is highly unusual to be able to do that with such a large colon!!! Yeah! We will be having a phone conference with him to discuss what is ahead. Another big deal... Madison told me earlier that she had to go potty and she did! She said that she could fill something "different" and decided to try! What a great day, with some very encouraging news!!!! Keep praying!

Playing House

Too Funny!

Maddie and Olivia are busy playing house! Olivia came down a few minutes ago and asked me to help her get her dress up clothes on. I asked her what they were doing and she said "playing"!

She just came back passed me to get something and said "mom, I just had my enema and now I feel better"! It is so funny that at 3 she knows about things like enemas!! My mom was cracking up yesterday when she saw all of the "medical supplies" aka enema stuff(!) she commented that my kids can REALLY play doctor!

By the way...both of these great pic of the girls are by a photographer in Freeport - Nancy Barker . Check out her website at http://www.nmbphotography.com/ .

Home Sweet Home!

Excited about the new "travel bags" from Carrie Lawver!

We are home.... sorry that it has taken me so long to give an update! I want to start by thanking all of you for what you have done... can I just share with you a few examples of how you have blessed our family
1- Prayers! We know that you are all praying for us! We could sense that in many ways this week!
I joked that there must have been more of you praying for our trip to Cincinnati as I was traveling alone with the girls – we made it in 7.5 hours, had no fighting, no whining and it was so smooth. On the way home with Jed to help it took 10 hours, fighting and whining where at an all time high and it was not fun! So we still have to determine whether Jed or less prayer is to blame!!!
2- We paid $114.00 for 11 nights in the Marriott hotel. Can you believe it!!! Thank you sooooo much to all of you that gave us Marriott points. A special thank you to Nicole Miller for her unbelievable generosity in giving us 30,000 points! What a huge blessing!
3- We paid for very little food on this trip as Jen Sturtevant arranged an amazing group gift of gift cards in the amount of $400.00.
Jed and I have been so humbled at the way our friends and family have surrounded us with support. We could not have made it through this last 3 months without all of you. We will forever remember all of the kindness that has been poured on us and are eager to be able to be on the giving end instead of the receiving end! Thank you seems so inadequate to express how we feel.

It has been a crazy couple of days trying to get back in the swing of things and figure out how Madison is adjusting in her normal routine.

Since I posted here is what has happened:
We met with Dr. Pena on Friday at Cincinnati Children's. Dr. Levitt was out of town so we had our departure visit with Pena. He is actually the director of the whole program so we were fortunate that we got to meet with both Dr's during our stay! They are both on the exact same page so there was no differing info. Dr Pena said that based on Fridays x-ray Madison was getting a little backed up. He talked in length with us about Madison condition. He stated at the beginning of the appointment “Madison is unfortunately no where near done, there is a long road ahead of us”. UGGGHHH. So here is where we stand moving forward:
Our biggest obstacle to overcome (and biggest prayer request) at this point is figuring out whether Madison has any bowel recognition. We are not yet convinced that she is aware of her need to go to the bathroom. We have had some success with pooing in the toilet but we have had a larger amount of accidents. We are sitting her on the toilet very often for long periods of time and sometimes just happen to “catch” the bowel movement. Dr. Levitt had told us that short term that could be a problem because of how badly enlarged her colon and rectum are. Dr. Pena seemed concerned on Friday that the recognition was not coming as he feels usually that would have happened already by the end of last week. Dr. Pena informed us that unfortunately there is a very small fraction of children that will never get that back and Madison could be in that percentage. He said that there is no explanation and no cure. (A side note from Jed: I am sick of hearing...."there is a very small number of children.....” followed by our child's diagnosis!)
If we determine that Madison does not have bowel recognition and control she is no longer a candidate for the resection surgery. If they remove the lower part of her colon she will be more prone to diarrhea then constipation. Incontinence with diarrhea is far worse then incontinence with constipation. So the treatment in this case would be one of two options. Continue on high amount of laxatives and see if we can figure out the pattern of her colon and try to catch all of her bowel movements. She would have to remain in diapers and would not be able to do things like : play at others houses, go to sleep overs or vary from her restricted eating schedule at all as that would make matters much worse. The other option would be to totally ditch the laxative and start a lifetime routine of daily enemas. We are not at all excited about that as it still would not give her a good quality of life and it would be draining on us and her. If you read the earlier entries you know how AWFUL it is to give these enemas. They are not little Fleet enemas that you get at the drug store. We have a full blown medical enema kit here at home that we had an hour long training on how to use! The sight of it would scare any of you away! Once we prove that we could successfully empty her colon every day in this manner we would look at having the Malone procedure surgery done. This is a surgery where they pull your appendix through your belly button and then add a port. Madison would then be able to administer her enemas through her belly button instead of rectally. We would do one enema a day and that would clean her colon allowing her to wear underwear and have no accidents. This would have to continue for life.

Not horrible – but not really a way that we want Madison to have to live. It is a much better option compared to taking extremely high dosages of laxative for life. The Dr.s can not give us the side effects of taking these for long periods as this is a relatively new program.

If we determine over the next little while that she does have control they will need to prove that she can hold liquid in her colon without having an accident (not sure how they test that...I am sure it would be another fun test involving an enema!) If she passes that test she would be able to have the surgery and would most likely be fully continent and able to have bowel movements on her own with little or no laxative. This is the only option that we have right now that would not demand a form of treatment for life. So pray for this!! We are uneasy about our little sweetie undergoing such a major surgery but with the goal of reaching a good quality of life for her this seems like the only good option.
We have had days since we have been back that we though maybe she was making some connections with the feeling to go potty and then the next day have 3 accidents with no clue that they had happened. This morning we had good success on the potty so I am hopeful that we can go all day with no accidents. We will see. I have to get an x-ray today to send via email to Dr. Levitt to verify that she is empty and does not need to increase the dosage of ex-lax. I PRAY that it is good news!
Thank you all sooooo much for your continued prayers for Madison and the rest of our family! It has been a rough road but we are fully confident that the Lord knows everything about our sweet girl and about what is ahead for her. We are confident that He will lead us in the direction that we are supposed to go and along the way He will keep Madison safe in His hands. We also believe that He is fully capable of healing Madison's colon even though we have been told that it is “impossible”. So we will continue to daily pray for a miracle while pursuing the best avenue for her to have a good quality of life where she is accepted in society.
We will keep you up to date! I am also trying to get a picture of her colon that they gave us at Cincinnati on the blog.... it is fascinating and it so clearly shows why we have problems... I will see what I can do!
Love to you all,
Nikki

Dr. Levitt

So the week is coming to a close. We have allot of mixed emotions.
We are thrilled that Maddie is cleaned out and probably the emptiest that she has ever been in the last 3 years. We can not believe how soft her tummy is. Ever day she continues to eat and eat and still empty so that is great! We are still not able to even think about “big girl undies” which is a really bummer. We probably had to high of expectations for this week as we were hoping to be coming home in underwear. We are having about 1-3 accidents a day and are not sure if that will change. After talking to the nurse today I have a better understanding of what is going on. They said that she was clean again this morning on x-ray so that is great. They feel like she could just have no sensation at all in her rectum and that is why she is not knowing that she need to go. They said that if that is the case it will not change. It will take a few weeks to see how she reacts once we are back in a normal routine. Lyndsey said that typically an x-ray will show in a week or so that we need to up the laxatives. If that is the case with her we will be at 5-6 squares. To high of an amount to continue for long periods of time.
We will just take it day at a time. Tonight they had me double the amount of pectin to see if we could “bulk up” her stool to possibly allow her to feel more the urge to go to the bathroom. That will take 24 hours to kick in so we will know by Saturday if that will help.
Also, her urine sample came back clear which stumped us as she is still miserable. They said that she could be dealing with mild dehydration and that if her urine is thicker it can cause some pain. We will make sure that she is drinking lots and see how she does tomorrow. If she still is miserable we will probably look into what else could be causing it.
It has been an exhausting 10 days but overall we feel like we have a much healthier daughter then when we started and a clear direction as to where we are heading, something that we have not had the last 3 years. Please pray that Jed and I will make all the right decisions for Madison in the months to come.
We meet with the Dr one more time tomorrow before we go and then he wants to have a conference call with us next week to touch base. We will keep updating the blog as we travel home and get into a routine. Our plans a re to drive to Akron tomorrow to get Olivia and then head home on Sunday!
We love you all and appreciate you!
Nikki