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. 

Welcome To Holland

There is an essay that has been circulating around the disabled community for quite some time and you may have even seen me post it on my personal Facebook page. It’s called, Welcome To Holland.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this……


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.”


"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.”


But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned.”


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



Okay, so as Wendy’s mom, I personally never mourned over not having a normal baby. I knew at 23 weeks pregnant that I was going to have a “abnormal” baby and I was fine with that and I was totally up for the challenge. In my personal experience, I think when I got to the airport my ticket would have already said Holland because I knew exactly where I was going.  But my point is, this is a really great way to to tell people how it feels to be raising a special child.

Just FYI: most SN parents LOVE Holland and now wouldn’t dream of going to Italy.

Life Worth Living

Those two pink lines can change your world,

but so can a doctor with a few simple words.

“Abnormal” and “rare” will scare an expectant mother to death,

but she knows she’ll fight for her baby until her last breath.

Being a special needs mother is no easy task.

Putting herself first is a thing of the past.

She becomes an advocate and expert and learns to persevere,

because her child has come first since they have been here.

As a mother, she’s always fighting and constantly giving,

because her child was given life, and that life is worth living.

Pouty Lips and Temper Tantrums; Reining In the Terrible Twos

The terrible twos isn't just something special needs parents go through. Unfortunately, this ugly phase is something all toddlers will experience to a certain degree. Some kids may experience them as early as their second year, beginning right after their first birthday, others may be two or three years old. Wendy is almost 22 months old, and the TT’s are in full force!


She has the sweetest little face, so it’s SO HARD to tell her no to anything, especially when she does that pouty little lip and looks up at you with those big, dark blue eyes, but it’s something that has to be done, usually for her safety. Most of the time, I’m telling her no, don’t eat this or no, don’t pull on your feeding tube when she freaks out and throws a huge tantrum, but there are other times when I can simply be changing her diaper or carrying her to another room and she gets mad. And boy does she know how to throw a fit! When a temper tantrum strikes, my sweet, precious Wen turns into a 16lb Tasmanian Devil that I can barely control.


Luckily, for me, this phase won’t last forever and the signing is helping give her a way to communicate, so we’re hoping that will help too. Being almost 2 and nonverbal is difficult. She can’t tell me what she wants, so she slaps me in the face or pulls my hair. It’s a good thing she’s so adorable or she’d probably be getting away with a heck of a lot less!  ;)

My child is different and I’m not afraid to shout it from the highest mountain.

Today I was sent a message on Facebook saying things like “Wendy will lead as normal of a life as you let her” and that “no one would know Wendy was special needs if I didn’t point out her differences” and for many reasons these things bothered me. This person, who I will keep nameless for their sake because I know many of Wendy’s followers would love to tell this lady off, sent this message because she said I was making her comment about becoming a grandmother about Wendy and her disabilities, which was not my intention, I just said that my mom had tried to do similar things but didn’t work out because Wendy ended up being a special child and I keep her with me all the time (if this makes sense, I’m trying to be vague as to not totally give this person away).

Did you know that 1 in 5,000 babies are born with an imperforate anus? Probably not, because I didn’t before Wendy was born and it’s probably because nobody talks about it. No one would have ever known Wendy was born without an anus had I not chosen to share it. But I did share it, because if I’m secretive about it, then she will feel like she has a reason to be embarrassed about it and Wendy is perfect in my eyes and God’s. He made her that way, so she should be proud of who and what she is. Other than Wendy’s small size, physically, she looks healthy and most people wouldn’t know that she was born with various birth defects and will face a life of the unknown, but if people comment about her small size, I’ll quickly tell them a little about her and her differently-abled-ness. Hell, I may just bring up something about Wendy and her chromosome disorder just because you mention your healthy grandchild, just like any other may mention that their child did this or that early/late. I have learned to be Wendy’s advocate and I am her voice. I will talk about her disability as much as I can and because of that, thousands of people know about Wendy and pray for her and if you don’t care to hear about it, unfriend me.

As far as me letting her live a normal life…  Am I overprotective? YES! I spent most of my pregnancy not knowing if she was going to live past birth and then 71 excruciating days standing over her in the NICU, so excuse me I keep her close and protect her as much as I can. That doesn’t make me a bad mother, that makes me a caring mother. Would I have treated a “normal” baby like I treat Wendy? I don’t know. I’ll probably never know. All I do know is that I’m doing the best I can with Wendy and what we’ve been given. I also know that I love Wendy with every part of my being and I will do everything in my power to give her the best life I can and if you think that means I’m holding her back, then I thank God that you weren’t given a special child and I was. 

Where We’re At… And Where We Need To Be

If you’ve been following Wendy then you probably already know that she passed her swallow study a few months back and we have began feeding her. Right now, Wendy is still on Neocate Infant formula via g-tube. She takes 920mL a day (which also happens to be 920 calories a day). At this point she’s not losing weight so for her small 15lb body, 920 calories is sufficient to sustain her and let her grow. The downside to that is, it’s going to take a heck of a lot of baby food to get 920 calories by mouth a day.


We have begun experimenting with Gerber ‘Lil Entrees and Wendy seems to love them, as well as baby oatmeal mixed with any pureed food, Gerber Puffs, and freeze dried fruits and veggies. She’s also drinking a bit of Gatorade, apple juice, and sweet tea (all mixed half and half with water, of course). Wendy’s total consumption of calories (other than formula via g-tube) was 12 calories from the 1/3 tray of Gerber pasta, 5 calories from the 15 Gerber Puffs, and about 4 calories from the 5 fruit & veggie melts. So todays today calories consumed by mouth was 21. That’s a long way from 920.


The best I’ve found for Wendy so far to get more calories is the Gerber Oatmeal. It’s 60 calories for 1/4 of a cup, and she can usually eat about that much in one sitting. Then I’ll add about 1/4 jar of baby food to it (which adds 20 calories) and I fill the rest with apple juice or water. If I add apple juice, that’s getting it close to 90 calories for one feed, which for Wendy is obviously great.


Even though the oatmeal has the most calories, I don’t like to limit her to just that every day. I want her used to eating different textures and tastes.  I’m sure we’ll get there eventually, but it’s just going to take a while.  And also, it’s not all about the calories, you have to look at protein, carbs, fat, vitamins & minerals, etc. but for the sake of comparison I just used calories.

ER Visit

It’s 7am and I haven’t slept since the night before last. As many of you probably know from following Wendy on Facebook, she’s been sick and running a fever for the past 2 days. After trying to go to sleep last night she woke up crying and hurting pretty severely. I cuddled her and tried to keep her as content as possible. Around midnight she vomited on me and her, so I went to change her clothes. As I was changing her, I noticed her chest was swollen, her pulse was well over 200, and her breathing was labored. It was like she was holding her breath for a moment in between each breath. I told Zed immediately I was taking her to the ER. I would rather be safe than sorry and I knew I’d never sleep while being worried about her. Zed had taken his sleeping medication and was kind of out of it, so I called my mom. (Also, Zed isn’t the best at handling stressful situations, especially when it comes to Wendy.)

We arrived at Athens Regional around 1am. The lady who took our name as we went in was being crappy and absolutely not worried about us because she was talking to co-worker about ordering shoes online. She obviously wasn’t paying attention when we said Wen was having problems breathing. So we got someone else’s attention and said we needed to see a doctor, now. They took us straight back.

We met with the doctor and he said, after examining Wendy, that her throat was red and her chest sounded congested in the front, which could be causing her chest to be swelling. She was also still running a fever of 101. He said he wanted to do blood work, chest and abdomen X-rays (to make sure her intestines weren’t twisted since she was born with intestinal malrotation), a urinalysis, and flu test. Her blood work, flu test, and urinalysis all came back fine (we are still waiting for one blood test to come back, it takes 24-48 hours). Her chest X-ray wasn’t terrible and her abdomen X-ray showed she was still constipated and gassy. We did a breathing treatment and they gave her Tylenol. She was diagnosed with a viral syndrome and upper respiratory infection. Since both of those are caused by viruses there is nothing we can do, except wait it out because antibiotics won’t kill a virus. We have to follow up with her pediatrician tomorrow.

Wendy is now sleeping. I’m hoping I will be able to fall asleep shortly. I have a feeling Wendy and I will be doing a lot of laying around and napping today.

2 Appointments In 1 Day

Today I had to take Wendy to two appointments, luckily only in Athens and my mom went with me to help. Her first appointment was to check her kidney reflux to see if we needed to continue giving her Bactrim daily and to see if we needed another follow up with a urologist. As you may or may not know, Wendy was born with right grade 1 VUR (vesicoureteral reflux) and mild left hydronephrosis. VUR is when urine back flows into the kidneys and hydronephrosis is swelling of the kidneys. The days after she was born, when they were checking all her major organs, a renal ultrasound showed mild hydronephrosis on her left kidney. Three weeks later a VCUG showed the grade 1 reflux on her right kidney. Because of that, she was put on amoxicillin daily for UTI prophylaxis. We were scheduled to follow up with urology after she was discharged from the hospital. When we met with urology, she was 3 months old, and they performed another renal ultrasound. That ultrasound showed the hydronephrosis was no longer present but Wendy still needed antibiotics for the VUR. They switched her to Bactrim since that’s more suited for children over 3 months and she’s been on it since then. Grade 1 reflux is usually something kids grow out of, so today we went to have her kidneys checked.

Today they did a VCUG (voiding cysto-urethrogram).  We had to strip Wendy down and put her in a hospital gown, then a nurse cleaned her bottom with iodine. Then, they inserted a catheter while a technician and myself held her down. The catheter was used to put a contrast dye in Wendy’s bladder. Once Wendy’s bladder was filled, the technician began taking x-rays. We had to hold her down until she urinated and emptied her bladder. As she was going potty, the contrast showed whether or not her urine was backing up into her kidneys or not. After her bladder was empty the catheter was removed and we were able to go home. About 2 hours later (when we were just leaving therapy), Miss Ivy called from Dr. Martin’s office to say Wen’s kidneys looked great and no more Bactrim was needed.

We also had her first appointment with a feeding therapist today. (Now do you see why I had to have my mom go? It would have been too exhausting to do all of that alone because Wendy is a handful and a half, HAHA!) Not much happened with feeding therapy. The therapist just wants us to work on desensitizing the back of Wendy’s mouth since she mainly chews with the front and said we should try to give pureed food a little more texture, which I already do because Wendy does better with thicker consistencies. We go back Monday for another therapy session and then next Wednesday is her well check appointment with the pediatrician. We’re going to try to get Wendy an Infinity pump so she can wear it in a backpack so she won’t be so constricted and limited in her movements.

Wendy’s really been doing pretty great. She’s loving the Gerber Puffs and Crunchies and she’s getting better at using her sippy cup. Hopefully things will continue progressing in a positive manner. 

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

There is no such thing as a stupid question.

In honor of Rare Disease Day, I wanted to do a blog on all questions people may have about Wendy.  So here goes…

When did we find out Wendy was “sick”?
They first noticed abnormalities at my 22 week ultrasound. They found Choroid Plexus Cysts in Wendy’s brain. CPCs are a fairly common finding in pregnancies and usually disappear before the 3rd trimester, however we wanted to see a specialist in Nashville to make certain it wasn’t anything to worry about. At the appointment in Nashville, at 23 weeks, they said the CPCs were still present and she had fluid building around her heart. Those two things are usually markers for Down Syndrome (Trisomy 21)  or Edwards Syndrome (Trisomy 18). Trisomy 18 babies usually don’t make it to term and the rest usually don’t live past a year old. We decided to go ahead with the amniocentesis because we wanted Wendy to have the best care available to her when she was born. At 25 weeks we found out there was an issue with her 7th chromosome, but they were still doing further testing to find out what exactly was wrong. We didn’t get the full results until 31 weeks, after I was already in the hospital.

Why did my water break at 29 weeks?
Wendy wasn’t swallowing amniotic fluid like babies are supposed to, so I was producing more and more fluid and it had nowhere to go. Therefore when I ended up with enough fluid for triplets, my body couldn’t handle it anymore, so my water broke.

Was she a preemie?

Yes, she was born at 33 weeks and 6 days, however, being premature isn’t what caused her health problems. Her chromosome abnormalities did. And most likely, her chromosome abnormalities is why she was born so early.

Why did she have a colostomy?

Wendy was born with an imperforate anus, which means her bowels were a dead end. There was no anus at all. The first step to correct this is to place a colostomy. The second surgery was to make an anus. And finally, the third was to connect her bowels to her anus and remove the colostomy. The final surgery was done February 21, 2013.

What other health problems does Wendy have?

Other than the imperforate anus, she has intestinal malrotation, gastrointestinal reflux, mild kidney reflux, microcephaly, and feeding difficulties. She did have swollen kidneys and ASD (atrial septal defect, a heart defect) which both fixed themselves.

Why does she have a feeding tube?

Wendy has a feeding tube because she could never swallow formula in the hospital. They suspected aspiration, so she needed a swallow study before we could start therapy to teach her to eat. She had one at 4-5 months old, but was not able to take enough liquid for them to be sure if she was aspirating or not. She has another swallow study scheduled for March 20.

Will she ever eat by mouth?

Possibly. If she can pass the swallow study we will begin feeding therapy and we hope she will be able to learn to swallow and breathe at the same time. However, if she cannot pass the study, it would be unsafe for her to eat by mouth.

Does she have any siblings and do they have medical problems?

Wendy is an only child. She was our first and will most likely be our last. Wendy’s genetic mix up was a random occurrence (neither me nor my husband have genes like hers) and they said they couldn’t tell us if we decided to have another child if it would be like Wendy or not. However, my husband and I have decided Wendy needs my full attention, so it would be best if she was our only one.

Does she still have things that are undiagnosed?

Possibly. Right now, she doesn’t have any issues going on that aren’t diagnosed, but that doesn’t mean other things won’t come up in the future.

The biggest question people asked was, since she has a one of a kind anomaly, what will her future be like?

We’re not really sure. Doctors can’t tell us what to expect, so we just take things as we go. So far, Wendy has nothing life-threatening. Many children with a 7p22 deletion (which is just one of Wendy’s 4 genetic anomalies) die from a heart defect at a very young age. Wendy’s heart defect (ASD) fixed itself when she was a baby.

And finally, what worries me most about her future?

I honestly don’t have many worries. As long as she is living a good quality of life, I will be happy. My biggest hope is that we can spread awareness, so people are more informed about children like Wendy. If more people are informed, I feel like more people will accept these beautiful, unique children. I feel like Wendy was given to me for a reason and I plan on advocating for her and sharing her story with as many people as possible.

First Dirty Diaper at 16 Months Old

Wendy’s Facebook Page

As most of you know, Wendy had surgery last Thursday. It was the 3rd of a three step surgery to repair her imperforate anus. The first surgery was at 3 days old to have a colostomy placed. The second was at a year old to make an anus. Then the anal dilations (to stretch her newly made anus and work the muscles) began a month later and Thursday, at 16 and a half months old, she finally had her ostomy removed and on Sunday she had her first poopy diaper.

This was our second surgery at Children's Healthcare of Atlanta, Egelston. Wendy's first few surgeries were at Vanderbilt in Nashville because Zed was stationed at Fort Campbell, KY. If any of you have been following Wendy since the beginning of her journey, you will most likely know that I am not a fan of the hospitals in Atlanta and I prefer Vanderbilt, but I will say, this time was not as bad as the last time and the nurses were much more helpful and considerate. My mom and I stayed with Wendy every night and Zed stayed at a hotel nearby. Then after the doctors rounded Zed would come in and my mom and I would go sleep for the day. Wendy refuses to sleep in any bed but her own crib, so my mom and I had to take turns holding and rocking her all night. Zed's aunt, uncle, and cousin came in Saturday and Sunday to watch her for several hours. That was a huge help. Our biggest issue is that Wendy is very active and wants to crawl and play, however, the only place she could play was her crib and it was metal with no bumper pads.

By Sunday I was at my wits ends and more than ready to come home. I have extreme anxiety and even taking Ativan twice a day couldn't calm my nerves. My fears of hospitals were never that bad until recently. I'm not sure if the 5 weeks I spent on bed rest while pregnant triggered it or if Wendy's 71 day NICU stay did, but now, if I'm there more than a few hours, I start panicking and with a special needs child, sometimes hospitals are a necessity. It was around 5:00 when Zed sent me a picture of Wendy's first dirty diaper. I called and said I'm on my way, we are going home! It took us hours to get discharged and we didn't get home until 11:00pm, but I was so happy to be back in my home and have Wendy in her own crib. She went straight to sleep.

We are still getting back on our normal schedule (we thrive off schedules and I'm very OCD about keeping to our schedule) but things have been much easier at home. While Wendy was in the hospital she pulled out her g tube button (and the doctor panicked and acted like he was afraid to replace it; honestly, I told him I could put a new one in, I just didn't bring her extra one) and she got a yeast infection around her stoma site. I've been treating that and it's looking much better. Now we are battling the extreme diaper rash/yeast infections on her bottom that they warned us about. We started off using the calmoseptine they prescribed, however, it got bad very quickly so I switched to Nystatin. I am calling her pediatrician in the morning to see if she has any other recommendations. The surgeons warned us that sometimes when babies are born without anuses and have them made that the diaper rash can get so severe when they start pooping that you'll have to see wound management doctors. I'm hoping Wendy's doesn't get that bad. Luckily, we haven't had any issues with constipation like they anticipated and Wendy's incision is healing nicely and starting to drain less. We're still getting used to this whole dirty diaper thing, but I think we're getting the hang of it. Besides, it's nice to see my baby without a colostomy bag. We haven't seen that since she was 3 days old.