My Moon and Stars

Zed and I were spying on Wendy this afternoon. We had put her in her playpen with a big, very special teddy bear while we made sandwiches for supper. We stood beside the stairs just watching her as she laughed and giggle and conversed with this bear.

This bear is very special because I got him the day Zed returned home for R&R during his deployment in Afghanistan. I knew he was coming home in April, but I did have exact dates. He told me he was stuck in Kabul when he was really getting off a plane in Atlanta GA. My mom called and said she needed help at their shop (my parents own an auto repair shop) and she wanted me to come answer phones. She told me to look presentable because I'd usually show up in sweats!  But when I walked in the office there was a huge Bearrington Bear holding a half dozen red roses and wearing Zed's ACU hat. I began looking for him and found him in the parts room.  It was the first time I'd seen him in months and I didn't want to let him go. That's why that bear is so special.....

... Okay back to Wendy's story. As Zed and I watched her hug and kiss and babble to this bear, I said, "How did we get so lukcy?".

You know, I've had numerous people tell me how lucky Wendy is to have a mom and dad who care so much, are attentive, and would do anything in the world for her. And yes, I do agree, Wendy's lucky she has us for parents. We have only one child so we focus 100% on Wendy. We have the financial means to care for her. We have family who are willing to help, even though I won't take the help. And we do have such a deep emotional bond with Wendy.

But truly, Wendy's not the lucky one. Zed and I are. She has given us reason to live, breathe, and get up in the mornings. Wendy is my sun, my moon and stars. And as unhealthy as it may sound, she is my world. So the next time someone says "Wendy is so blessed to have you." I'll be thinking "No, I'm the blessed one."

Elimination diet for the next month.

FIES- Food Protein-Induced Entercolitis Syndrome

I have diagnosed Wendy with that myself for her milk and soy allergies.

She also has a reaction to grapes and anything grape flavored.

She is going to have allergy testing done soon, but my concern right now is; why is she constantly having yeast infections?  My guess is that she has another FPIES allergy and I’m determined to figure out what it is before we go back to GI in June.

Once Wendy’s done with her antibiotics, she only has a few more days we will begin our version of an elimination diet. For 3 days she will be allowed nothing but formula and water. After that we will introduce simple foods like baby safe foods and rice cereal (I believe rice may be our culprit). By adding only one food every few days, I will be able to document if there were hives, vomiting, how her bowel movements were, etc. Once she eats something that her body doesn’t tolerate and she has a reaction or gets a yeast infection, I can write that down as a food to avoid.

We are also going to try goat milk to see if she has a problem with that.  I’m hoping that if goat milk isn’t a possibility, then maybe coconut milk. I’m a little afraid to try almond milk before she has her allergy testing done because she may be allergic to nuts.

I know that a normal doctor would just keep giving medication for the rashes and GI will just say to only give her formula through her tube, but I don’t want Wendy in pain from constant yeast infections and I don’t want her to not be able to have a cup of juice or a jar of baby food. So I am taking matters into my own hands and Dr. Mom is going to figure this out. I’m keeping a journal to show the doctors my progress.

Wish us luck. I know this is going to be difficult for Wendy and for myself. But we’ll get it done.

Pray, send good vibes, or whatever it is that you do.

Two ruptured ear drums and 4 molars coming in makes one very uncontent baby and one very sad mommy.

Wendy began getting fussy one day last week. She was chewing on her hands, running a low grade fever, not sleeping as well, you know, just the usual signs of a teething baby. I never thought that within a weeks time she'd have double ear infections, punctured ear drums, and a horrible yeast infection. I feel guilty for not catching the signs sooner. Maybe if I had, her ears wouldn't have gotten so bad. Regardless of whether I could have prevented some of the damage, it's here now and I'm having to deal with it.

One of the hardest tings about being a mother is when your child is sick or hurting and you can't do anything to fix it. Wendy looks at me with these eyes that are clearly screaming "mum mum, I'm in pain and I don't understand why". I just hug her tight, tell her I love her and that mum mum is doing everything she can to make Buggy feel better.

Speaking of making Buggy feel better, Wendy got 3 more prescriptions today (on top of her Prevacid, Bethanechol, Claritin, and poly-vi-sol, plus the ibuprofen and tylenol that I'm alternating, and her Hyland's teething tablets, which are all natural). For the ear infection, Wendy has an oral antibiotic that has to be given once a day, but must be given 2 hours before or after her antacid and vitamins. She also has antibiotic drops to put in her ear twice a day. Her final new medication is Diflucan, an anti-yeast medication, that she is taking 2 times a day for 3 days because she already is just getting over a yeast infection and taking so many antibiotics will just create more yeast.

Even with all this going on, I can't even feel bad for myself. One reason being that I love Wendy so incredibly much that I would do anything for her, no complaints. The second reason is because my poor momma is sitting for the umpteenth time at the hospital with my grammy, who is in ICU at Emory. Grammy has been up and down and my momma has been steadfast and always there.

Everyone, I'm going to ask you to pray. Pray for healing for Wendy, strength and patience for me. And please, pray for my grammy. She's going through a lot of surgical procedures and pray that God leads those doctors hands. Lastly, I wam you to pray for my momma. She's my rock and I've always been able to count on her, but she takes care of everyone but herself. So pray for stregnth to care for grammy, the emotional ability to handle it all, and for her to be at peace, no matter what happens.

Momma, if you read this, know that I love you and I'm sorry. I'm sorry I'm not able to help more. I'm sorry I don't spend much time with you anymore. I'm sorry you're stuck at Emory by yourself. My heart aches for you because I know I can't come take your place. All I can do is stay here, and get your sweet grandbaby well and send my love and encouragment. You are truly an amazing daughter and if the time ever comes, I hope I can be just as great. I love you Momma. Stay strong and hang in there and know that if there is anything I can do here, please please let me know! 

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. :)