March For Babies. Walk for Wendy.

It’s that time again. That time that I start bugging everyone to donate to March of Dimes.


I decided to do a very intimate party for immediate family for Wendy’s third birthday and invite all of our extended family and friends to a March for Babies event 10 days after her birthday to celebrate with us. We would rather you donate to March of Dimes instead of buying Wendy a gift.


 The walk will be October 18, 2014 in Lavonia, GA. You can order t shirts (Preview Them Here) for $15 but they won’t be available for purchase until July! But don’t worry, I’ll remind you!


To be involved, you don’t have participate in the walk, you can just DONATE HERE. Also, you can purchase a shirt even if you can’t attend the walk. I understand many of Wendy’s warriors live out of state and I urge you all to buy a shirt if you can and support sweet Wendy!


My final announcement is that starting MARCH 25, I will host an online Younique party (the makeup and beauty products that I sale). I make about 20% of every item sold. For this party, I will donate my entire profit to March for Babies under the Wendy’s Warriors team.  So if you’re interested in making yourself beautiful and giving money to a great cause, be on the lookout for my March for Babies Younique Party!

Long Time… No Blog

I  guess it’s been a while since I sat down and wrote a blog. Facebook has made me lazy as far as blogging goes because most of Wendy’s followers are following from her Facebook page instead of following this blog. When I made a page for Wendy a little over a year ago, I promised myself I would not give up this blog. This blog was how people got to know who Wendy was. So tonight, I’m taking the time and I’m going to update you on what’s been going on in our lives, which you may already know if you follow Wen’s Facebook.


It was a rough December with Wendy getting sick on my birthday. She woke up that morning with an incredibly high fever so I did what any mother would do, I cancelled my massage at the spa that I had planned.  I watched her, looking for other symptoms, but could find none other than her being lethargic. It made me think back to this past summer when she had that abscess on her chest. She was behaving eerily similar. A few hours later the redness started on her chest, so at that point I was pretty sure it was another abscess caused by a strep infection. I called her doctor and we decided to put her on Clindamycin to try to stop the abscess before it forms. Within a few days, she was back to normal.


A few weeks later, I noticed a skin infection in her ear, which was diagnosed as infantigo and treated with topical antibiotics. At that appointment I got her doctor to check her lymph nodes because I felt one while I was changing her diaper. Not only were there several on both sides of her groin, but there were also ones underneath her arm. Our doctor wanted to do bloodwork and at that point I knew they were checking for Leukemia. A geneticist once told us that children with abnormal 7th chromosomes are higher risk for childhood Leukemia. I immediately took her to have her blood drawn. This was on a Friday and we had to wait until Monday for results. My heart was in shambles. I couldn’t bear the thought of Wendy going through any more suffering. I know she may never have a normal life, but she’s two years old and has been through so much in her short life. I called as soon as the doctor opened on Monday and when I asked, they told me to hold on, the doctor wanted to speak to me. I was preparing myself for the worst, but she said Wendy’s counts were high, but not cancer high. So for now, she is fine!


Now for today. Last night Wendy wouldn’t sleep (she had a runny nose, from what I assumed was allergies). I finally got her to bed after midnight and she woke up at 4:30 am with a fever of 104. I took her to the doctor at lunchtime today. They tested her for strep throat and the flu. Both were negative. Her lungs are clear and her ears look good. She was diagnosed with a viral infection, that just requires fluids, motrin and tylenol, and of course TLC from her mommy.                                                                  

Elf on the Shelf.

Elf on the Shelf has become a popular Christmas tradition in many homes, so it's no surprise that Wendy has one too. Wendy's elf, Finn, was adopted the year she was born and has sat on our mantle for the past two Christmases. This year, I decided it was time for him to get to work. Instead of Finn being a mischievious little elf like some, I wanted him to teach Wendy positive things. Every day, Finn either brings a gift for Wendy or has an activity for her to do. I'm taking pictures daily of Finn and his messages for you to see. Obviously, I shouldn’t have 2 days 10s, the second one should be day 11. Life of a special needs mother haha. I’m lucky to have gotten all of them done especially since Wendy got sick around the 18th.

 I hope you enjoy reading what our did for Wendy each day of December!

Wendy, A Medical History

Many times people ask what is wrong with Wendy. Well, her diagnosis is an unbalanced chromosome translocation between 7&10, but that obviously doesn’t describe her medical issues. So I’ve decided to do a blog post and give everyone a list of Wendy’s medical problems, including a brief description of each so everyone can understand her a little better.

Chromosome Abnormality- It literally means what it says. She has an abnormality in her chromosomal DNA. She has a deletion on 7 (missing 73 genes) and an extra part of 10 (17 genes duplicated) in it’s place. She also has a deletion on 3 and a duplication on 12. The abnormalities on 3 & 12 are thought to be benign and not of any significance. 

Congenital Anomalies- These are structural deformities present at birth that are caused by chromosome abnormalities. (There are other things that can cause congenital anomalies, but in Wendy’s case, it’s her chromosome abnormality.) Wendy has several congenital anomalies. For the next few things I list, if they are a congenital anomaly, I will put (CA) beside them.

Imperforate Anus (CA)- This means the opening to the anus is missing. At 3 days old, Wendy had a colostomy placed. At 12 months old, she had an anoplasty (they surgically made her an anus) and finally at 16 months old, she had the colostomy removed and her rectum was connected to her newly made anus. She now poops like everybody else.

Interrupted IVC (CA)- IVC is inferior vena cava, which is a large vein ascending through the abdomen.  Interrupted IVC is a rare developmental defect in which 10% occurs with other anomalies.

11 Ribs (CA)- Wendy only has 11 bilateral ribs on each side, instead of 12. They were also noted to be very thin.

Flat Nasal Bridge (CA)- Wendy has an unusually flat bridge and small nasal tip.

Hypotelorism (CA)- Meaning, her eyes are “too close” together.

Sternal Cleft (CA)- A very rare malformation, that result from defective embryologic fusion of paired mesodermal bands in the ventral midline. Only 100 cases have been published. This is the vertical groove in Wendy’s chest.

Microcephaly (CA)- This is a neurodevelopmental disorder. Microcephaly is defined by a small head circumference. 

Intestinal Malrotation (CA)- This is when the intestines don’t form and make turns where they should. Intestinal malrotation itself is not much of a concern, but it puts Wendy at high risk of volvulus (when the intestine twists in on itself, potentially cutting off the blood supply) and intestinal obstruction (when a stalk of fibrous tissue known as Ladd’s bands creates a blockage that prevents the intestine from functioning). To help prevent this, Wendy had a LADD procedure done when she had her g tube put in. A LADD’s procedure involves surgical division of Ladd's bands, widening of the small intestines mesentery, performing an appendectomy (Wendy’s appendix was in her upper left chest cavity) and correctional placement of the cecum and colon. 

Bilateral IVH- IVH is intraventricular hemorrhage. This is a type of brain bleed. Wendy’s was not severe, so hopefully will not leave much/any damage.

VUR- Vesicoureteral reflux is the back flow of urine from the bladder into the kidneys. This can lead to bacteria reaching the kidneys and causing infection. Because of this, Wendy had to take antibiotics daily from the time she was born, until she was a year and a half old (at that point, her cystourethrogram came back good saying she had outgrown the reflux).

Hydronephrosis- This is swelling of the kidneys. By 3 months old, Wendy had outgrown this.

ASD (CA)- This is a heart defect. While the baby is in the womb, there is normally an opening between the upper chambers of the heart (atria) to allow blood to flow around the lungs. This opening usually closes around the time when the baby is born. If the opening does not close, the hole is called an atrial septal defect, or ASD. Wendy’s closed on it’s own when she was around 2.5 months old.

Sacral Dimples (CA)- This is a dimple at the base of the tailbone. Wendy also has (at least what we think) is a protruding coccyx. She has a nub at the end of her spine that we are going to have checked by ultrasound.

GERD- GERD is gastroesophageal reflux. Wendy takes medication (Prevacid) daily to help control this. On days when that is not enough, she also has Bethanechol. 

Dysphagia- This is difficulty in swallowing. Because of this, Wendy has her g tube. Her g tube was placed at 6 weeks of age and before that she was fed by an NG tube in her nose.

I believe this is all of Wendy’s conditions. It is hard to remember all of them when making a list! I hope this helps you understand more about Wendy and the different anomalies she has because of her chromosome abnormality. :)

Nap-time and Feeding Tubes

Normally, I blog about things that have gone wrong, Wendy being sick, or my opinion on something concerning special needs children/moms.

This, however, is pretty humorous (even though I didn't think so at the time).

I laid Wendy down for a nap around 1:00. I was hoping she'd fall asleep quickly so that I could nap too. I'd had a headache, no, not a headache, a migraine since I woke up at 9:00. 

You're all probably thinking "ooo she got to sleep in, how lucky" NOT! I was up from 3:00am- 6:30am with my little Tator Tot. 

Ok, back to laying her down.... I changed her diaper and hooked her up for a feed and put her in her crib. I go back to my bedroom to sit in the dark until Wendy falls asleep.  When I look at the monitor, she was tangled 100 different directions. So I went in and unhooked her. Then she unsnapped the bottom of her sleeper and pulled it up where she could reach her tube. She pulled all the dressing and Mepilex off and tried to eat it. So I went back in there took the rest of the dressing off and even unhooked the extension so she wouldn't have anything to pull on.  For a while, she tried to pull at her button through her sleeper them she got frustrated and unsnapped the bottom and pulled her legs out... and then TOOK OFF HER DIAPER. I walked in and she was playing with the diaper and laughing about it, all with her bare tushie shining. I couldn't help but laugh.

Finally I taped her button down, put on a new diaper, and got a zip up sleeper. I laid her back down. By this time it was 2:30-ish.  After fussing for about 5 mins she finally passed out and slept until 4:45. So did I ;)

Mommy’s Surgery.

This doesn’t have anything to do with Wendy per say, but it has to do with me, her mom. Some of you may or may not know I had to have surgery last month. I had been told they thought I had endometriosis and I could start treatment right away, but the only way I’d know for sure if I had it was if I had a laparoscopy. So I went into surgery thinking they were going to find the endometriosis, burn some of it away and then I’d start the lupron shots. Well when I woke up, I was told I did not have endometriosis, rather I had 2 cysts/tumors growing and he removed them. When I woke up, I was ready to go home. They asked if I needed any more pain medication through my IV and I said no so they said I could go home as soon as I could pee. I asked them which way was the bathroom and the nurse said, we’ll get you a wheel chair. I decided to just walk.  After I got back to my room, she took out my IV and handed me my discharge papers and instructions. I had to leave in a wheelchair (hospital policy lol). Once I got home, I told my mom I wanted to be alone, so I propped up on pillows and took my pain meds and slept off and on all day. When Zed got home, he had Wendy with him. He helped out about changing diapers and doing her care at night, but starting the day after surgery, I was back doing everything for Wen (except in the afternoons because Zed helped a lot then). I hurt pretty badly for about a week, but after that week, I’ve felt fine. I’ve even had a period and didn’t cramp and hurt like usual.

Sorry this post is so late…. I am going to try to catch up on some things I have missed, like Wendy’s birthday for example.

But if you follow Wendy on Facebook then you shouldn’t be behind because I update there every day.

Living At A Hospital

When Wendy was born, I talked a lot about what was going on with her but I failed to mention what life was like for me and Zed. We literally lived in Nashville for almost 4 months between mine and Wendy’s hospital stay.


September 6, 2011 my water broke and I was admitted to Centennial Women’s Hospital in Nashville, TN. That night, Zed went home and got my hospital bag that I had packed, packed himself a bag, and came back to stay with me and he stayed with me on a hospital sofa bed until the day I was released. He stayed day and night, only leaving to report to work every Monday (just to check in and let his superiors know how we were and he would get to leave again after formation) and to go get himself supper every night (which at times he just picked up food from the hospital cafeteria).  Now that I look back on it, Zed was amazing. He slept on a very uncomfortable bed and he was so sweet to me, doing everything he could to help. Every night, he would help me get in the shower and while I was bathing he made up my bed so I had a nice place to lay down when I was finished. We used to lay in the hospital bed together and watch DVDs from Redbox. He really was the best husband I could have wanted.

October 8 Wendy was born and transferred to Vanderbilt. I got released October 9. After spending all day at the hospital, we would go to our hotel room to sleep. We rented room 504 at the Holiday Inn Express, which was only a block from the hospital, until we got a room at the Ronald McDonald House. We lived out of suitcases, ate out every night, and rented movies on the TV. I don’t think Zed and I have ever been closer than we were at this time. We used to just go to different stores in Nashville, just to walk around and get out of the hospital and the hotel. At the time, I didn’t really enjoy staying in a hotel. I like to be home and have my own space, but after moving to the RMH, I missed the hotel. A room finally opened up for us after 30 days at the hotel. We had a small room, with 2 twin beds and a tiny bathroom. The only TVs are in the common areas, which was bad for Zed because he was crazy about watching The Walking Dead (and some other shows). I’m not saying it was a horrible place, because truly it is a blessing because they provide a place to stay as well as food, all for free (when we were paying over $100 a night at the hotel and that was with the “hospital discount”), but staying there wasn’t exactly comfortable. On top of everything, I ended up getting really sick, at the same time Wendy had surgery, and I couldn’t go see her for days. So I actually went home to stay for a night or two (we only lived an hour from the hospital). From then on out, Zed and I tried to go home once every week or two, just so I could clean and we could sleep in our own bed.


December 18 Wendy was finally discharged. We were all so happy to be going home. Zed and I had lived in a hospital for almost 5 weeks, then we stayed in a hotel for 4 weeks, and the Ronald McDonald House for 6 weeks. I love Nashville, don’t get me wrong, but I was ready to be back in Oak Grove (Fort Campbell)! In 15 weeks we had only been home 5-6 nights. What really sucked was paying rent and utilities while no one was even there.


It was not easy and I would not want to ever do that again, but I think it brought our family together. Zed and I relied on each other and reconnected. Spending so much time together helped make up for the year we had lost from him being in Afghanistan. Now, if Wendy ever gets hospitalized again, we have to stay in the room with her (because she’s so active and nurses have multiple patients and cannot keep watch on each toddler). We literally could not even go to the bathroom in her room without someone else there because she’d pull out IVs, rip off monitors, etc. I couldn’t imagine trying to do a long term stay with her now. Hopefully she will continue to be healthy and have no hospital stays in her future.