We received an email from someone who has had similar problems with their child's belly blowing up, but were never able to figure out the problem. We plan to speak more in depth with them and get an understanding of what other tests to figure out where the underlying issue is. Like some of you had said, it may not be Hirschsprungs because she has been able to stool on her own without stimulation. So, hopefully your right and that is the case, but at least the biopsy will rule that out and we can move on to other possibilities.
Please keep Kayleigh in your prayers Monday around 12:00 (EST) and pray that she will come through these procedures with flying colors and we can get back on the right track to coming home.
For some reason I feel very positive about all of the procedures that I can feel it in the pit of my stomach that something great is going to happen. I can't really express my feelings beyond descriptive words, unless.....I show you in a couple photos. Hmmmm, let me think.....
Okay...I got it!!!!
Right now, this is how I feel after yesterdays post:
And this is how I am going to be once all the procedures are done and we can get to go home:
Lord Help Me! :)
31 comments:
you are too funny!! i admire you for your sense of humor even through everything that yall have been through and continue to go through. i'll continue to pray for kayleigh and I know that she will come through her surgeries with flying colors!!!!
♥heather, joseph, & bailey alyse
-Alabama
Praying for Kayleigh as always!!! Will be thinking of you all on Monday and keeping up with her progress..are you going to twitter?
I'm praying for Kayleigh and the surgical team(s).I hope/pray everything goes smoothly Monday and they're able to give you some solid answers.
Don't you think you will actually have less hair (than the 2nd pic) when this is all done. LOL!!
Love the humor!
Stephanie - Yes, I will be twittering through the whole thing so everyone will be updated.
I will post that so everyone will know. Thanks for the heads up.
Adam
HA HA Too funny Adam!!! Praying for the sweet baby girl. We know that she will be at home with you guys soon. Hope you guys have a great weekend. We have really been loving the pictures of Kayleigh lately!
Blessings,
Jorgensen Family
This is my first time visiting your blog. I came across it from another friend's blog. I am definitely praying for Kayleigh and family as I know how the NICU roller coaster ride feels...maybe not to the extent of what your experience has been so far though. I can't wait for you to be able to bring her home and put the NICU days behind you.
So then what you are saying is once it's all done, you'll look just like you do now?
I don't get it... ???
Brent (Abby's Dad)
www.riggsfamilyblog.com
Praying for your baby and family from Australia. I look forward to seeing the amazing miraculous results of your beautiful daughter healing.
Brent - Ha Ha Very Funny :)
Don't worry, I will get you back!
Will keep Kayleigh and all of you covered in prayer. And those pictures----the last one is hilarious!!!
We are Praying for Little Kayleigh in South Mississippi.
You guys are Awesome parents.
You have officially gone "mad"! ;) Continuing to pray for you all!
Susan
You have an award waiting for you at my blog!
Haha, I love reading your humor! Praying as Monday approaches that everything goes smoothly and NO DRAMA! Still looking forward to Kayleigh being in her car seat! BTW, what ever came of the foreclosure... did you get it pushed back?
Freeman's
FINALLY!!! I am so glad you have a day and time for the procedures now. Kayleigh is prayed for all the time but there will be speacial prayers for her all day on Monday. I know good things are to come after Monday, we serve such an awesome, loving Lord. I love the pics and so glad you can still joke during all of these trying times. Give Kayleigh a big ole kiss and hug. Have a wonderful weekend. I will be checking the twitter updates Monday for wonderful news on Miss Kayleigh. I know she will come through all of this with flying colors.
OH MY WORD! At that second picture! Whoa! Anyway - Still praying in Louisiana!
Love the photos, ahahaha. I will be praying for her:)
yay for a surgery date! So glad all those procedures can be done together and so soon, too! Looks like Kayleigh is on her way to coming home soon!
Adam, when will you be posting the tally from all your ongoing paypal donations from the button on your site? Would love to see how our generous efforts have been adding up for your family! Please share with us. thanks! Bless you all!
ROFL!!! you are funny! I will be praying for Kayleigh and your family too on Monday!
Yes, please do post the totals from the paypal button on your site! Would be wonderful for those of us contributing to you financially to see some feedback! Thanks so much Adam! Kayleigh remains in our prayers and good thoughts. We wish her a speedy recovery and fast track to her cute crib at home!
You're in our prayers! I've added the button to my blog!
Hehehehe nice pics!!!
I'll be praying on Monday!
Love the pictures. Good luck with the surgeries on Monday, I hope you are able to better understand this disease.
Will keep Kayleigh in my prayers. My dd had some of the same gut issues. It took a couple of months before they figured out what the problem was. She had malrotation of the small intestine, and a subsequent stricture (narrowing) in her small bowel. Once that was repaired, she was able to increase to full feeds, which was HUGE, and her CRP finally went down to normal. Hopefully, the answer for Kayleigh is a simple one! Prayers.....
Adam, We have a similiar bowel issue. Tyler is a 25 weeker, now 3 and a half. Since day one we have dealt with distended abdomen, constipation (he can go 10-12 days without BM), lots of reflux, total dislike of eating, etc. He received every other day suppositories in the NICU (which probably didn't help). He underwent a bunch of tests in the NICU and more recently (rectal biopsy, endoscopy, colonoscopy, fluroscopy). His ped GI diagnosed it as "immotility of prematurity." The brain and GI track are very immature when your born that early. Unlike Hirschsprung's instead of one area not functioning, hundreds of tinsy tiny areas don't work, the connection with the brain just never occured. It'll either get better as he grows or it won't. For now he's on Zantac, Reglan, (we were free of it for a year,but got put back on it two days ago) Glycolax (2x's a day), Fletcher's Laxative once a day, a high fiber diet, he's diary free, and we intend to start cutting out more of the hard to digest foods this summer (eggs, diary, gluten, nuts). He can consume more fiber than you or I would ever be able to deal with :)
He also has low muscle tone in his trunk, I think it only makes since that his GI would also have low muscle tone. So maybe that plays a role too.
Good luck. I'll be praying for Kayleigh on Monday.
Hi Freemans -
I'm a new reader from Jenna and Brayden's blog.
I just wanted to let you know that as I read through Kayleigh's story, my heart is filled with home and love for your beautiful baby girl.
I will be praying for your sweet baby girl and will be following her story.
Lots of love!
Analiza
I wish Kayleigh the best on her surgyer's that she is going to have on Monday. I will keep you all in my thoughts and prayers. From Kim and family
love the humor...sometimes you have to laugh. ok, it's always good to laugh!!
Ok, Kayleigh!!! We will raise our prayers from Utah every time we think of you tomorrow!
You are almost there! Stay strong baby!!!
Poor Kayleigh, God has plans and he didn't want you to have the surgery today. Lots or prays, Little girl.
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