Prayer for Others.

I may have unintentionally sparked a bit of controversy on my personal Facebook page. My post was:
I know many of my facebook friends "like" Tripp Halstead's page and pray daily for him. I'd just like to remind everyone that there are many, many sick/disabled kids that need prayer too. I've met many families facing difficult struggles through Wendy's support page and I would love to get more prayers for them because they don't have hundreds of thousands of followers, and they haven't been on the news. So I say tonight when you say your prayer for Tripp, pray for those less known children who are also facing difficult challenges and struggles of their own. And of course, I ask for continued prayers for my sweet, precious Wendy.


 

I want to start by saying, I in no way meant anything negative toward Tripp or his family. Team Boom all the way! I also did not mean that I wanted Wendy to have that kind of exposure via news/facebook/whatever, however I do not mind sharing Wendy’s story with anyone who is curious. I have no shame in talking about it and I feel the more people that are informed about Wendy, the more accepted she will be because she has disabilities and will never be what society considers “normal” so I want her and others to understand being different is okay.


Now to address the part people may have misconstrued. I definitely did not mean that Tripp and his experience should not be shared with the world. It is a miraculous story and I believe it’s nice that people know about him. What I was saying, is that there are other children out there that are just as sick, have beaten just as many odds, or are experiencing an extraordinary life with disabilities and they all need your prayer too! It doesn’t matter that you do not know their name or that you’re not following them on Facebook or that you haven’t seen their story on the news; still pray!

Modified Barium Swallow Study

This past Monday, Wendy had her second swallow study. The first was done at Vanderbilt when she was around 5 months old and could not be completed because she did not take enough liquids. Wendy had the study done because she has dysphagia, difficult with swallowing. The two main things noted in her study were pharyngeal residue after swallowing and laryngeal penetration of thin liquids.

Pharyngeal residue means that when she swallows, she doesn’t swallow all of the food and there is residue left in the back of her throat. Because of this, we have to feed Wendy small bites, very slowly. We also have to make sure her mouth is empty before feeding her another bite. Sometimes we will have to give her an empty spoon to make her think she’s getting another bite of food so she will swallow again and clear the back of her throat.

The other thing mentioned, laryngeal penetration, was described to us as the liquids playing peekaboo with her windpipe. When Wendy swallows liquids, more than 50% of the time, a little liquid would go into her trachea and come back out. She is not aspirating, but laryngeal penetration can be a predictor for aspiration and puts her at higher risk, so it’s just something we have to be careful of. Again, we have to give small, slow sips.

All in all, Wendy passed her study and these big words make it sound much worse than it is. Wendy has been cleared for feeding therapy and her rehab potential is “good with continued intervention”, so eventually (hopefully) she will not be feeding tube dependent. This is a very big and exciting step for Wendy and our family. We are hoping for continued good news and success!

Playing Catch-Up

I have not been updating as much as I used to, so I wanted to do a quick blog to let everyone know what’s going on with Wendy and what we will be up to in the following weeks.


If you follow us on Facebook, you’ll probably already know that Wendy got sick with a cold 3 weeks ago. That made us have to postpone her swallow study, which will now be done this coming Monday, April 8.


Yesterday, she had her post op appointment with her surgeon. Dr. Wulkan said she is healing well. The incision looks great. Her rectum is soft inside (which is a very good thing) but that we could continue to dilate her once a day/every other day, just to help keep it soft so she continues passing stool easily. Wendy is having between 2-4 bowel movements a day, which indicates that she will be able to control her bowels, so she should be able to potty train and not constantly have an output of stool (like her colostomy, she could not control when she went). He also said her yeast infection/diaper rash doesn’t look that bad; he said he’d seen much worse in kids who had imperforate anuses and that we should continue what we’re doing and her skin will eventually toughen up. We go back in 3 months for another check up. We will continue to see Dr. Wulkan until she is ready to potty train, then we will go to the colorectal clinic at CHOA where they will manage her until she is older. Here’s a link for the clinic to give a little more info about what they do- http://www.choa.org/Childrens-Hospital-Services/Pediatric-Surgery-Georgia/Specialties/General-Surgery/Colorectal-Clinic. As far as the little bit of granulation tissue and redness around her g tube, he said it’s nothing to worry about and doesn’t seem to be bothering her so as of now, it’s not an issue to be concerned with.


Another exciting thing is the Elberton Civic Center has been booked for June 1 for the Warriors for Wendy pageant. The proceeds will be donated to the Ronald McDonald House, so we are very excited about it and super thankful to Shining Moments Pageant Productions for hosting! Here’s a link for the event page on Facebook Warriors for Wendy Pageant, Facebook as well as a link for paperwork Entry Form. Here is all the info for the pageant as well Pageant Info.  Even if you don’t have a child/teenager to enter in the pageant, you can still attend or purchase a t-shirt. Donations are also welcome. If you have any questions about t-shirts or donations, you can email me at wendys.mom7.10@gmail.com and I will be happy to help. Last year, in Wendy’s honor, we raised almost $2,000 for March of Dimes. This year we wanted to give back to RMHC because it’s an amazing organization that helps so many families, including ours. We have been blessed to have insurance and have been able to pay for Wendy’s medical treatments, medications, hospital stays, supplies, etc so since there are so many people who have offered to do fundraisers for us, we decided we wanted to give back to those who truly need it instead.  So thank you to everyone who has bought a shirt and supported us. (Also, I still have Wendy’s Warrior bracelets for sale 1/$3, 2/$5 plus $2 shipping if needed, if anyone wants one.)