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!