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.)

Sign Time.

Wendy is almost 18 months old now and still very nonverbal. She can make simple one syllable sounds, like “pa”, “da”, “ma”, etc. however, she can’t really communicate with us. We decided to work on baby signing. Surprisingly, the first thing she picked up was “eat” even though she doesn’t eat herself (at least not by mouth). We’ve been feeding her a bit by mouth, in practice for her swallow study because impractical for us to think she’ll just get to the study and know how to eat without working on it beforehand, and she has learned that raising her hand to her mouth means “eat”.  Today we tried carrots mixed with a little oatmeal (she tends to do better with a thicker consistency) but she gagged quite a bit, so we will try again later. Her swallow study was moved until April 8 since she’s been sick (and still is) with a cold, so her nose is stuffy and she’s having more difficulty swallowing.


I know I haven’t been updating the blog as much as I used to but for simple things, it’s easier to just post a quick status on Facebook. I will try to get back to writing more because I really want to keep this blog going.

Warrior for Wendy Shirts

Warrior for Wendy shirts available! 

$20 each. (Add $5 for shipping)

Sizes; 

baby’s onesies NB-18M 

children's (2-4, 6-8, 10-12, 14-16) 

adult’s (S,M,L,XL,2XL,3XL,4XL,5XL)

How to order and pay:

Payments can be mailed to:

1037 Bakers Ferry Rd

Elberton, GA 30635

PayPal as gift to:

wendys.mom7.10@gmail.com

Or taken to my mom at Capell Automotive in Elberton.

Please leave a note with your size and name (and address if you are not local).

Tripp Halstead

Tripp’s Facebook Support Site

Many of you have probably seen or heard about Tripp on Facebook. He is one popular little boy. His family also needs continuous prayers, which is why I’m writing this blog about him.

For those that don’t know what happened, here’s Tripp’s story in his mothers words.

Bill and I met in 2006 and got married in 2007. We were both living in Asheville, NC. I fell head over heals for him and still feel that way 5 years later. He is an amazing husband and father.

I was already 30 when we were married, so we wanted to start a family. Now I realize that is not as easy as it sounds. We thought we had it all planned out. And each month was met with huge dissapointments.

So finally we decided to go to a fertility clinic and were told we were perfectly healthy, but since we had been trying for so long, they would help us. Nine months later, we had a perfect baby boy. (I had a pretty horrible pregnancy, was on bedrest, had to walk with a walker and sometimes had to travel by wheelchair. I developed a muscle disorder, then placenta previa, so I had to have a vertical C section. So you might notice my huge scar in some of the bathing suit pictures posted.) But it was all worth it to have my baby.

So a year and 1/2 later, we decided to have another baby. Went back to the same fertilty clinic and got pregnant with a baby girl. Ella Mary Halstead. Her due date was set for Oct 2, 2012. Yep, the same month as Tripps accident. But I had a misscarriage just a few months after being pregnant. At that time, it had been the most dramatic thing I had ever personally dealt with. I cried and cried, couldnt sleep, eat, ect. Anyone that has gone through this knows what a nightmare it is. And we learned soon after that, if we didn't try again immediately, my eggs would be gone. But we were too devastated to try at that point.

Dr's don't know everything, but to be told Tripp is the only child I would ever carry inside me, make this accident even worse. I couldn't imagine losing my one perfect miracle. So we are so thankful that he is still with us. No matter what condition he is in. The Dr's still won't tell us how far he will go. They just say with this much brain damage, most children don't survive. So that is why we pray every minute of everyday. No one knows what he will be able to accomplish.

Some of you might not even know what happened the day of the accident...He was playing on the playground at daycare and a huge limb fell out of a very high tree. It fell on his head and crushed his skull into many pieces. They took him to Winder-Barrow hospital and then flew him to Egleston Childrens hospital in Atlanta. As Bill and I were driving to meet him in Atlanta, I don't think we spoke 10 words to each other. We were scared and we just prayed. We honestly didn't know how bad it was.

As soon as we got there, they let us see him. He looked perfect. No blood, no cuts, he looked so peaceful. Then the Dr started telling us how bad it was, and it took me some time to realize they were saying he could die. It was a slice to my heart and soul. So the next few hours after that were a total blur. When I dropped my happy, perfect boy off at daycare that morning, it might of been the last time I saw his smile or his eyes open or him awake. I will never take another day with my baby for granted.

So he survived surgery, then the next 24 hours and made it til Friday. Then he took a turn for the worst and they told us to say our goodbyes. That was the worst day of my life. To think he had survived this and then given no hope. But Tripp proved them wrong, he is a fighter and he pulled through and we have never looked back. He is in rehab now and even though he is making tiny babysteps, he is moving forward. 

I cherish every moment with him. He is my whole world and I want him to know how much he is loved. I didn't want this post to be all sad, I wanted everyone to know how important every single day is with your loved ones, hug them, kiss them, let them know how special they are to you. Even if Tripp hadn't pulled through, I can honestly say there wasn't one single day of his life that he wasn't hugged on, kissed on and told "I love you". He is a very special boy and thank you all for loving him too.

You can read more recent updates on Tripp’s Facebook page. An update from his mother, Stacy, that I read today truly broke my heart.  She said, I look at my sweet sweet beautiful baby and can't believe this is my child. Laying there motionless, no expressions, no movement of any kind, no noise except the occasional scream or cry. No recognition in his eyes. It made me realize that yes, the trials I may face with Wendy and have faced with Wendy have been and can be just as difficult as what they’re going through, but at the same time, I feel like its easier for me. Not because I am stronger than Tripp’s mother, but simply because I was prepared. I knew at 23 weeks pregnant when I had that amniocentesis that something was wrong. I knew before I even gave birth to my baby that Wendy had a one of a kind unbalanced chromosome translocation. I knew that she was the only baby in the world to have this. I also knew she would face and have many disabilities. I can’t imagine having a “normal” child and all of a sudden having everything change in one instant. And that’s exactly what happened to Tripp and his family.

So tonight when you pray, not only am I asking you to pray for Tripp, but pray for his mother and father too. Pray for peace within them, strength for them to continue on this journey, and courage to face the things they thought they would never have to. 

through the good times and the bad.

I’ve come to the realization lately that when things are going really well for Wendy, I don’t blog as much. Maybe it’s because I don’t think the posts will be as interesting or maybe subconsciously I’m trying to keep the good memories to myself or maybe I’m just so caught up in cherishing her accomplishments that I simply don’t take the time to share. Whatever the reason, I’m going to try to start writing more positive posts and sharing Wendy’s triumphs with you all.


Since Wendy’s surgery, she’s been doing really well. She seems to be recovering quickly and enjoying her time without a colostomy bag. She’s also crawling so much better! I told myself I was going to start taking her out more once she got rid of her bag because it would be easier and I’ve kept to that promise. Last week, I took her to Zed’s family’s quarry and left her with Janet (Zed’s aunt) and Suzanne (Zed’s cousin) while Zed and I went to lunch. Yes, Zed and I actually went to lunch, BY OURSELVES! Since Wendy’s been born, Zed and I haven’t done much together. We’re trying to change that. Also, I’ve taken her to visit her great-grandparents this past weekend and we went on a shopping trip to Walmart. I know that doesn’t sound like much, but I used to dread taking her to the grocery store because if her bag came off, we’d have to leave all of our un-bought food and take her to change her bag. A leaking bag is not like a dirty diaper. A leaking bag cannot wait.


Not much else has been going on with Wendy. She wasn’t acting like herself last night and she woke up with a fever of 101, but I’m hoping it breaks soon and isn’t a big deal.


I’ve been trying to post more videos of Wendy, so be sure to check out my YouTube channel.   http://www.youtube.com/user/jamiemclanahan?feature=mhee