Sunday, July 13, 2008

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 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...................

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 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 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 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 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!