Monday, February 23, 2009

Part One...Our Two Girls ~ Francesca's MC story

cescabath
Our two girls are very similar...and so very different. As many of you know, our girls mean everything to us! I have tried to be honest and open here on our blog, but I do find myself holding back. One the issues that I have hold-off on is the medical condition both of our girls have been diagnosed and are currently living with...a mega colon. This is the formal definition of a mega colon (from Wikipedia, the free encyclopedia) -

Mega colon is an abnormal dilatation of the
colon (a part of the large intestines) that is not caused by mechanical obstruction. The dilatation is often accompanied by a paralysis of the peristaltic movements of the bowel. In more extreme cases, the feces consolidate into hard masses inside the colon, called fecalomas (literally, fecal tumor), which require surgery to be removed.

Now, can it be a serious condition...YES! Can it be fatal...YES! And is it a condition that someone can live with...YES!

Now with that said, I must admit I have thought a lot about doing a post like this but never really had the courage to. How can I express to you all what living with not only one child who has a mega colon but two is like and how much of "our world" depends on who pooped and how much did they poop? My wonderful friend Sara from Football & Fried Rice asked me about doing a post where I can tell our story of our two daughters and their diagnosed medical conditions. So after much thought and energy (on how to tackle this) I have decided to give this a try. Here is part one to our story below starting with our oldest daughter, Francesca who is truly one beautiful little girl...inside and out!

When Keith and I started our adoption journey (after experiencing some set backs on starting our family) we never dreamed where this journey would lead us to and how we would accept where our chosen path lead us. Our oldest daughter Francesca was adopted from China back in November 2005 through China's traditional program. She was 10 months old at the time of our adoption. She was such a scared and very emotional baby when placed into my arms on the never-going-to-forget day three years ago. Within minutes of her being placed in my arms, I knew something just wasn't right. She cried...and I mean cried for a long time and after looking back on the photos that were taken when in China...she just looked so lost. I wish I knew than what I know now but as they saying goes, you live and you learn...and we truly did. Once we arrived home, we noticed that she was having some bowel issues from not going - to - going way too much. We tried everything from regulating her diet to increasing her daily intake of fluids. Medication and exercises were also tried with no such luck. Now, please keep in mind, we had no idea what was going on and after many MANY appointments with our pediatrician, he decided to send us to a specialist to see if they pin-point the problem. Now please remember that during this whole time Francesca personality was a little bit like a roller coaster ride. Sometimes, she was very happy and other times, she was just miserable. In my heart, I just know that something was not right. Within the first 20 minutes of our appointment with the gastro-specialist, she was able to confirm that Francesca indeed has a mega colon and it was very serious. She was severely impacted and something needed to be done that day to relieve her ASAP! She was admitted into the hospital and started getting the needed medications through a feeding tube (that was placed through her nasal cavity). This poor little girl...my heart just broke. Going through China's traditional program was not a guarantee that we were going to get a healthy baby by all means, but we so never expected this. According to her doctors, if action didn't take place that day, we could of had a very different outcome. Since that day, not only have I done a ton of research on mega colons, joined a local support group (our daughter was at one time the youngest member...now our Annabelle is), but I have been faithful in giving her the medications that she needs several times a day and have support & encouraged her in eating a high fiber diet (which is not always that easiest thing to do). Francesca's mega colon has put limits on her life. She has dealt with having serve diaper rash for most of her life...all the way to bleeding sores on "her bottom" because of her mega colon (she has scars "down there" from the sores she has experience) and has experienced several major "blow -outs" where her bowels just get so backed up and she can no longer hold "it" and it explodes...everywhere (this is the other side to her mega colon - either she is blocked up and needs a ton of medicine and/or professional help to help her movements along...as I mention above - or - she just can't control her bowel movements and it is explosive) . Since she is having a very hard time getting potty trained (her bowels are constantly working and constantly leaking because of her medications...she can NOT get constipated), she can not go to preschool, she can not join dance classes, she can not take art classes and everywhere we go, we must carry a load of diapers with us for changing purposes and she is very limited on what she can do because of still being in diapers. When I ask her about being potty trained and going on the potty, this poor little dear just feels that it will never happen and she feels that her bowel problems are more controlling & important in her life than wanting to take some art classes and/or preschool. (how sad is that!) Keith and I are very passionate about helping our children and this situation is no different. After asking a lot of questions, having many pow-wows with all Francesca's doctors, and doing a lot of research, we decided to try and conquer this disease in a very different way. A few weeks ago, Francesca and I started seeing a child psychologist who specializes in children with medical disorders. So far so good. Her therapist has been wonderful and has some great ideas to help out Francesca with her bowel and emotional issues. Since our first visit with her therapist, I have learned so much about our Francesca's life before being placed into my arms that day three years ago and I have also learned so much from her therapist on why Francesca is the way she is. Some of the things we did learn about our Francesca and her life at her orphanage was that they most likely knew that she did have a bowel problem and since they didn't know how to handle it or treat her for it...the only thing they could do was tie her to a potty chair for long periods at a time (we know this because of the markings that we on her legs when we first gotten her and after our therapist did some research...our biggest fears were confirmed...she was tied to a potty chair for long periods of time). Also we discovered that she was never in foster care (as all the other children that were adopted at the same time as Francesca) because of her bowel issues and she never formed any type of bond with anyone from her orphanage (how could she when she was left alone in a room most of the day...all by herself). Just learning this helped us understand so much about why our little girl acted & behaved the way she did. Now, I am not saying that she was mistreated in any way. I do feel and believe that her care takers just didn't know what else to do. I am not blaming anyone for this...I am just happy that I finally got some information...proof...to back up my suspicions on what I thought happened before being united with us. Now with all this said, I can truly see why our little girl does have such strong issues with her bowels. Not only does she have a mega colon...but her early treatment for the mega colon was not the way her condition should of had been handled...especially the emotional bonding that she never experienced before coming into our lives. We now know that reassurance, love, trust, and communication are the keys to living with a mega colon...(oh ya...and a high fiber diet too!)

Please remember that Francesca has not have any surgery to correct her mega colon. Her specialists believe that the part of her colon that is affected will over time go back to its normal size. Am I overly happy about all the medication she is on...no I am not, but if she doesn't take it...she get blocked up...and that is just not good for her. If you are wondering what types of medication she takes, here they are...Miralax over 17grams per day - Benefiber 2-4 tablespoons daily, a stool softener...depending on diet intake for that day - and Fletcher's laxative for when she misses a day of going....along with doubling up on all her other medications and if needed, Fleet enemas (which we had to resort to many times in the past).

Only time will tell what will happen with Francesca. We live with this disease every day...dealing with a ton of medications, a strict diet and constant discussion about poop. We also deal with issues of that little girl being tied to a chair for long periods of time without anyone around. Francesca has conquered so much over the three years she has come home with us and this is not going to stop her living her life. We are making sure of that. This is Francesca's story of her life ~ so far ~ with a mega colon.

Since we learned so much over the years of successful and failed treatments and since we feel we have an amazing team of doctors and specialist backing us up 100%...we felt it in our hearts to seek another daughter from China that also has been diagnosed with a mega colon...and this is where our Annabelle's story will begin with the next few days.

(I am going to have to break up both girls' posts. Looking back and reliving all that has happened is very emotionally draining for me. I will be posting Annabelle's story here in the next few days...so please come back. You'll truly see why this disease can be so different...and what factors in on that happening...)

UPDATE: Since I started to compose this post, we have started again down the journey of potty training. With the network of supporters we have surrounding us, it looks like that we are making progress! She is doing well and I am so proud of her! I so wish I could go into more detail at this time, but for the respect of my daughter's struggle and privacy, I am going to hold off on her progress until I feel comfortable exposing the details here. If anyone at any time has questions regarding this post, I would so appreciate that you would email me privately so we can discuss this further...

11 comments:

Janelle said...

oh, my heart breaks for the struggles she's had. I'm so glad she has a supportive, creative, and loving family to journey with her (and a sister to relate!). how bewildered and frightened you must have been in the early days.

I totally respect her privacy & am cheering her on! She's such a bright, brave little sweetie!

Hugs,
Janelle

Sharon said...

I so admire your courage nad generosity in doing this very special and useful post. I am praying that it gives courage to others who are considering special needs adoption and with the wait, so many just need posts like this to set them on their way. God Bless you all!!! Beautiful family! And special children in every way!

sara said...

Wow - THANK YOU for sharing. I can't help but feel like the more people know more special needs, the more informed decisions they can make. I can tell from this post that a megacolon is very serious! But, also, it is manageable & with the right resources, families can make educated decisions! Thank you, Shelly, for sharing about your gorgeous daughter, whom I know you adore.

I also respect Francesca's privacy, knowing that many would not understand what she was going through, even if it WAS explained to us :( But know that we are cheering her on & praying for her to have minimal trauma as she learns to take this huge step in her little life!

Love you,
Sara

LaLa said...

Thanks for sharing all of this. I can't imagine how hard this is on all of you. Breaks my heart to know all she has been through. I hope the Potty Training goes well!

Oh, Annslee (who sometimes needs a fiber boost) LOVES the fiber one yogurt (only 5 grams so don't know if that would help you?)

Kate said...

You know...I read this account and I can't help but KNOW that Francesca was MEANT for you family. Together, I have no doubt that you all will figure out how Francesca can overcome her rough beginnings. How lucky you all are to have each other....

How very brave and generous of you to share this here...you just never know who you may be helping.

God bless...

Kate

Steffie B. said...

First off I want to applaud you for the heartfelt post....there is no doubt she was placed with you by God....what an incredible story of love for your daughter....I was brought to tears several times throughout the post....I hope that your precious girl heals emotionally and physically....

Half Gaelic, Half Garlic! said...

Oh Shelly, I know you have struggled and worked through this post for a long time before you were able to hit that publish button. It was so heartflet and very courageous......I know what you all go through each day is not easy, but it is working.......and I am so happy to hear that Francesca is making progress.

We can all learn from stories like these....I look forward to hearing part two! Both of your precious girls were destined to be yours......they were both matches that were made in heaven:)

Hugs Girl,

Lisa

Sue said...

wow. So much of her story I didn't know. So much for her to overcome and to face still. It is wonderful that she is getting the medical care she needs. Hopefully soon she will have success using the toilet and be able to participate in all the classes she can!!!
Thank you for sharing her story...and big hugs as you continue to help your sweet little girl with her medical issues.

mncfi said...

Shelly, your love for your daughter just shines through every word of this post. Thank you for such an inspirational story. Your sweet daughter has certainly found the safety and unconditional love she needs with her family. I am also reminded by your post that behind so many of the precious smiles on our kids' faces, there is a story of courage and challenges to overcome. They are such amazing kids!

Kerry said...

Thank you for sharing so much of family in these posts. You love and dedication to your children is so clear. And you have amazing girls.

My husband has colon issues and required several surgeries and these issues are so close to my family as well. We are a HIGH fiber family too!

All my best- I know how intense and stressful it can become.

Hugs and thank you for reaching out and inspiring others to perhaps open their minds to SN.
Ladybug hugs,
Kerry

Jodee Leader said...

Shelly -- Thank you for sharing your story with megacolon. I didn't know that Francesca had this condition. It sounds like you are getting her all of the right help to live with it. She is sooo blessed to have you both for parents!