Thursday, January 19, 2012

Gracie's Special Need

Jan 2012-4242color pop

Disclaimer:  This post is about poop!  You might not want to read it, but I have had alot of questions about Gracie's sn....and her sn happens to be poop! :)

Ok...Here it is.  I did not come to the decision to share Gracie's special need lightly, and I will admit that if the outcome of our Cincinnati trip had been different, I would probably not share.  I do feel, however, that when you are in the middle of adopting a special needs child, experiences from other moms is invaluable.  I know this from my own experiences with both my girls.  Please understand that every child is different and every file is different.  This is just our experience with Gracie.  So...here it is:

Gracie's file gave her this special need "megacolon".  Her file stated that she spent the first year of her life in the hospital, but there a no medical records from this time at the orphanage.  Her file stated that she was bowel incontinent and also had a low IQ test in it.  I will not lie...her file was scary to me!  I'm sure you don't remember, but we were racing her file with our paperwork.  We did not succeed.  She hit the list before we were ready, so the only way I could lock her file is if she stayed on the list for 30 days.  This did a couple of things for/to me.  First, I probably gained a ton of gray hair stressing over it.  Second, it gave me 30 days to read her file and gather all the information I could gather.  I did not think I could handle a bowel incontenent child, but I felt so strongly that she was supposed to be ours.  I was really conflicted about it.  During this 30 day period, I was able to ask questions of the orphanage.  I got a picture of her nasty scar...right on her tummy.  I also got the information that she was potty trained, but still wore diapers sometimes and that she pooped 5-6 times a day.  Hmmm.....  I was also able to speak to someone who had met her, and gave the report that there was nothing wrong with her IQ.  Finally, as I read her chart for the 100th time, I looked at the date on it.  It had been written on the day she turned 2.  This gave me much peace.  Wesleigh was turning 3 and still didn't have bowel control!  I decided, that day...if she was still on the list after 30 days...she was mine...regardless!  I now feel that this was all such a God thing.  Her file, being so negative, served 2 purposes:  she stayed on the list (even though her file was locked 3 different times), and it caused my faith to grow by leaps and bounds.

Fast forward to China...While we were at the civil affairs office on that first day, in the middle of everything, Gracie had to go to the bathroom.  She was in panties and told the director that she had to go, but there was definitely something not quite right.  Her stool was, and continued to be extremely runny and she had to go often.  Also, when she said she had to go...she had to go NOW!  Before we went to China, I had already decided that I would be taking her to Cincinnati Childrens to their colo-rectal center.  It was the best decision we made.  Before we got to Cincinnati we were able to deal with her need by learning her cues and also learning that any fiber in her diet (grapes, fruit, etc) made it worse.  She loves those foods, but I had to limit them greatly.  She wore panties mostly while awake and only had 1 accident at school.  Honestly, if it never got better than that...we could handle that. 

She and I spent 2 weeks in Cincinnati.  The first week was spent trying to figure her out.  What was her problem when she was born?  What is her problem now?  What can we do for her?  After a few tests that were not much fun, it was determined that Gracie was born with hirschsprung's disease.  Here's my version of what that is:  The nerve endings in Gracie's colon did not completely form, therefore there was a portion of Gracie's colon that could not function.  In China, they did surgery to take out the affected portion of colon.  The surgery was successful and although there are a couple of things that could cause some issues later (scar tissue, etc.), it's nothing we have to worry about now.  Her diagnosis right now is a hyper-motile colon.  Her colon works too fast, especially when you eat fruit, etc.  Our second week in Cincinnati was spent in bowel management...trying to come up with the right cocktail of drugs to get her colon to slow down.  They put her on Citrucel to bulk up her stool and Immodium to slow her colon down.  MIRACLE!!  I don't think the child had ever had a formed stool...ever!  She now goes about 3 times a day, and we don't have the "emergencies" that we used to deal with.  It's not perfect.  She has days that things don't go quite right, but those are very manageable.  I think as she gets older, that part will get easier and easier.

So what we do now...We are on a regiment of both medications 3x/day.  We have our routine down and it's easy.  I have to watch her closely because she is at risk for infections of the colon and could also flip to being constipated at some point.  I do not know if this is something that she will have to do the rest of her life....they couldn't tell me.  We feel very blessed to have had a situation that was resolved so easily and painlessly.  However, it wouldn't have mattered.  We would do whatever we needed to...she's ours...and that's what you do.

I, unfortunately, do not have much more knowledge about bowel issues than what I stated here.  In fact, I now know much more about poop than I ever wanted or expected to :)  If you have questions, I would be more than happy to answer them if I can.

24 comments:

Brooke said...

Thank you so much for sharing Gracie's experience and needs. I truly hope it helps another Mommy somewhere down the road. I'm also grateful it turned out to be something very managable! And, as always, Gracie's cuter than polka dots!! xoxo!

Leggio said...

Jennifer,

You are such an encouragement to me, to see you walk in what the Heavenly Father has for you with such faith. Thank you for sharing on your blog. The girls our precious and your sweet boys too. They are blessed to have you as a mom.:)Have a good weekend!

Jana said...

I am sure you have helped another worried mom out there make a decision or look at a new treatment for their child. The very best advice comes from parents who have real experience with a special need so I thank you for sharing Gracie's story with us!

Amy said...

Wow- Thank you so much for your openness & honesty. Your whole family is absolutely beautiful- your daughters are simply stunning. I'm not sure if I would have been able to get over that "scary" file, but it seems God was speaking to you (I'm so happy you were able to hear Him!!). I wish I knew you better- we live very near Cinci!
Amy

Sophie said...

thanks for sharing. I was told that my son possibly had the same thing and after much testing the diagnosis was lazy colon. My 5 yr. old daughter who is adopted from Guatemala still has potty issues. It's very difficult because she's held her urine for up to 6 hours at a time. Bowel movements are a whole other story!

She has to take Miralax often, everytime I wean her off she'll do good for a few weeks and then we're back to the Miralax. This has been stressful for me, she refuses to even go number 1 in public restrooms, so I have to make sure we go potty before we leave the house and immediately returning home.

I pray for wisdom for the doctors as they help Gracie with this issue, and for strength for you and your husband.

Kim said...

I understand Gracie's issue I too have colon problems which started when I was a teenager. I have ulcerative colitis. I was one of Gracie's sponsors and I am so glad she is getting treatment now. Thank you for sharing her journey.

*Overflowing* said...

Fantastic job. God will use this post mightly. I'll never forget the day the Lord very clearly said, "NOW is the time to post..." And so I obeyed...it was very scary because this is such a personal part of our babes lives but God has used it some incredible ways.

Here's when we shared:http://mycupoverfloweth.blogspot.com/2010/10/solomons-medical-needs.html

We hadn't been to Cincy at that point but we were there shortly after that post. I can not say enough about their incredible staff...truly a gift from the Lord.

Many hugs and blessings from a mama that deals with poo issues every day, too ;)

Nicole said...

Jennifer I have a friend whose son has the same thing and my husband was born with no sphincter muscle and no anal opening so I am very familiar with "poop" They were able to rebuild my husbands and he has some loss of control and when he has to go he has to go. He monitors his diet and leads a normal life. My friends little boy still struggles some but its the same thing. They moniter fiber and he is on a few meds I think. But he also leads a very normal life!

Martha @ Berrybliz said...

Thanks so much for sharing...for sharing not only her special need but your concerns and your faith.

Brian and Katie Pinson said...

So...I stalk your blog! I will be traveling soon to go get my first child from HK and he is special needs. Although his is different, your openness is very encouraging to me. Thank you so much for sharing. Your blog ministers to people you have no idea about...like me!
www.scoopsofjoy.blogspot.com

Christina said...

THanks for much for sharing about Gracie's SN! I realize it is difficult to share a SN that is about bathroom things that we don't talk about everyday and I appreciate your willingness to share. It's so very helpful to those of us who are wanting to adopt a SN child, are open to many SN's, but find it hard to gather realistic information.
I'm happy for you and Gracie that her SN will be fairly easy to manage.
XIn nian quai le!

Anonymous said...

Thanks for sharing that Jennifer! You have already encouraged so many! My 10yr old has chronic constipation and is on Miralax 2xD and will be for life (they don't why). Naomi'S SN causes her to need mineral oil every other day to avoid constipation. All of this to say...toddlers and poop well...it just IS ! Thanks for sharing Gracie's SN.

Cathy & Naomi

Sharon said...

My goodness, my heart would have plummeted each time her file was locked. What a blessing that such simple things are able to help Gracie! Your story is a wonderful testament to stepping out on faith. Thanks for sharing! Love the photo's of Gracie-she is just beautiful!

Renee said...

Adopting is such a leap of faith.
Thank you for sharing your personal struggle and thank you for showing us the conclusion to a beautiful story of obedience to God's Plan. Your family is precious and a glowing example to others. We've adopted one sn child and it's been hard but I wouldnt change a minute of it. We hope to go back again and your family's story is a blessing to this scared and unsure mama's heart.

Renee

Anonymous said...

Thank you for sharing. I, too, stalk your blog and enjoy your photos and stories. We adopted a SN little girl, who's now almost 4, in May 2010. She was born w/out an anal opening. she was post op when we got her, so she also has the scar on her tummy, but we have still had issues w/ 'poop'. we have it under control now, for the most part, but she does get constipated frequently. I tried Miralax when we first arrived home, but that made the exact opposite problem, all she did was poop! I'm so glad to hear that you have everything handled for the time being and hope it remains that way.
Laura

snekcip said...

I admire our transparency. Thank you for sharing Gracie Joy's SN. I know somewhere a mother heart is relieved to know "she is not alone and there is someone traveling the same journey".

Colleen said...

Thanks for sharing! My son has Spina Bifida and has bowel issues because of that. We are in the process of doing the paperwork to get him to Cincinnati's colorectal center. What an amazing facility, like no other! I'm glad we are only a couple hours away. I'm glad they helped Gracie too.

Football and Fried Rice said...

I remember SO vividly those weeks when you couldnt lock Gracie's file!! *I* was sick!!!!!!! Ill never forget the email stating that you finally got to lock it :) PHEW!!! Gracie was totally meant to be an LSU girl!!

Thanks for sharing! I know sometimes its uncomfortable, but you are right - this info could really inform someone trying to grow their faith too!!

Jennifer said...

Gracie was so meant to be a Doughty! I know this was probably hard to share, but I know God will use this post to help many others! As always, you're such an inspiration! Love y'all

Keisha said...

Thanks for sharing Jenn! I can't help but think of some family reading this post right now..that may be teetering on what to do with a child. You sharing this info. could help them so much. Although every child is different.. the one thing that You said.. was "you just knew she was meant to be yours" A mother's intuition & Prayers for discernment are the keys! ;)
So glad you guys hung in there & stepped out on Faith! Praise the Lord!!
She is such a blessing I know!

Kelly said...

Thank you for sharing this medical information. I think many sn sound so scary but are quite manageable. It is great that you are making yourself available to others...I'm sure it will encourage others to consider adoption of a child they might not otherwise consider.

groovy mama said...

Good to share:-)

We are adopting a little girl w/' poop issues'

Permanent Nomad said...

your openness is so inspiring! i'm sure this post will help/inspire many mommies and mommies-to-be! thanks for sharing!! <3

Anonymous said...

I just wanted you to know that my nephew is almost 18 and he is one of the oldest surviving & successful Hirchsprungs (sp) cases in the UK! He is a wonderful and intelligent member young man. If there is anything I can help you with (or my sister) please let me know.... My understanding is that his bowel was perforated like a tea bag. This area of bowel was removed. He had a colostomy and iliostomy until a successful reversal was performed. My sister had to learn which diet suited him best and he learned bowel control as he matured.

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