Thursday, March 16, 2017

This Mom Sh*t is Hard

It's time to get honest. Really, truly honest.

My kids have issues. And yes, I know every kid has issues to some extent. I also know that "it could always be worse." But when it is your kids who are suffering, it hurts your heart in a way that stops your  world from spinning. It consumes your mind and prevents you from focusing on any individual task. Forget doing anything thay requires brain power because your children now occupy every available head space.

Let's start with Maya, my beautiful, smiling 4 month old girl. We have tried 4 different kinds of formula, including the very costly Nutramigen, in an effort to relieve her gastrointestinal symptoms. She spits up after every feed. Sometimes it dribbles out of her mouth while she giggles. Other times, she cries in pain until she projectile vomits, and then breathes a sigh of relief. We've tried Zantac for possible reflux, but saw no relief. And because her symptoms didn't really seem to match up with reflux (aside from the projectile vomiting), the pediatrician basically ruled it out.

Beginning around 6pm every night, she cries and draws up her little legs with abdominal cramping and gas pain. We've tried gas drops, gripe water, and probiotics. All of which only provide temporary relief.

And as for the diarrhea, I will spare you the details. But let me tell you, my husband and I never expected to have so many discussions about the color and consistency of poo.

Aside from all of the GI upset, Maya is a happy, easy-going little girl. All the more reason I feel bad for her. This week, we will be seeing a pediatric GI doctor at Hopkins. I pray she is able to offer us some insight into Maya's tummy problems so this poor girl can finally get some relief.

And then there is my 2 and a half year old boy, Liam. He has had so many struggles in his short little life. He was diagnosed with reflux as a baby and has been on Zantac ever since. We've tried to wean him off several times, but have been very unsuccessful. His symptoms returned within weeks every time.

Liam has always been in the <10th percentile for weight. And we've struggled to get him to eat since he started solids. To rule out anything physical, he had a GI workup at Hopkins, including an EGD and sigmoidoscopy, shortly after turning 18 months old. Everything came back normal, which is a blessing and a curse. Of course we are grateful there is nothing physically wrong. But that leaves us with the harsh reality that his refusal of food is behavioral.

The GI doctor explained that he likely developed a negative association with food due to the pain caused by reflux. Plan of action: add Carnation Instant Breakfast to his bottles to keep his weight up and maximize his calorie intake by adding fats (ex. butter, peanut butter, Nutella) to the foods he will eat. All of which sounded great in addressing his physical needs. But no one bothered to tell us how to address his negative association with food.

As Liam approached his 2nd birthday, my husband and I noticed a whole new issue. Liam had developed his own toddler language, which sounded like a combination of Russian and jibberish. He would carry conversations without anyone knowing what he was saying, and then get frustrated when people didn't understand him.

Our pediatrician acknowledged that Liam's speech was delayed, but assured us that all kids develop language at a different pace. But the more people didn't understand him, the more he started acting out. He started biting, hitting, and throwing tantrums. He would cry because we never knew what was wrong, even though he was trying desperately to tell us.

So I made the call to Infants & Toddlers, a state-run program that helped children under the age of 3 who met a certain set of criteria. They would come to the house to assess Liam and determine which (if any) services he qualified for. I was determined to get him the help he needed.

After the initial assessment, Infants & Toddlers determined that Liam qualified for speech therapy (ST). I felt so relieved! But...what about his feeding issues? He did not qualify for occupational therapy (OT) because he met all the necessary milestones in other areas. I expressed my concern, and was told that OT could be added if Liam was not making progress.

A few months into ST, and Liam was making progress...but very slowly. And because we were still having feeding issues, OT was added to his regimen. It wasn't until OT came to work with Liam that he really started making progress.

After working with him for a few weeks, she noticed that Liam had poor motor function in his mouth. We had to work with him on chewing and moving food around in his mouth with his tongue. She also determined that Liam had some motor planning issues (which I, of course, needed to google). In the most simplistic terms, things that are automatic processes to me, are not automatic for Liam. When asked to do something new, Liam has difficulty determining what steps are necessary to get to the end result. I was shocked no one had figured it out before.

Each week, I learned new ways to help Liam. Not only did he progress in speech and feeding, but also his behavior improved. I was so relieved that Liam was picking up words and trying new foods. Day to day things were still very much a struggle, but at least things were better.

And then my world came crashing down on me. Two weeks ago, Liam started refusing to eat again. He would only drink his bottles with Carnation. He began throwing tantrums, and having anxiety attacks. He woke up multiple times a night, climbing into bed with us. When I tried to take him back to his room, he would cry so uncontrollably that he would start dry heaving. When I asked him what was wrong, he couldn't tell me. He started using more jibberish than real words again. Out of seemingly nowhere, he would cry out "owwww" and hold his belly in pain.

In those 2 weeks, Liam lost 2 pounds and showed significant regression. He no longer wanted to walk and run; he wanted to be carried everywhere. When he was hungry, he would ask for his "ba ba." On the rare occasion he actually attempted to eat, he would chew a few times and then spit the food back out. I was completely at a loss as to what could have happened to spark such a change. And every time I tried to talk to Liam about it, he would refuse to talk, cry uncontrollably, or use his own language so I couldn't understand him.

That was the last straw. I called Kennedy Krieger to ask for an evaluation. Something was clearly wrong with my child. And it was beyond simply having ST and OT come to the house to work with him. After faxing over Liam's records and evaluations from Infants & Toddlers, I was able to get him in next week. I pray they are able to give us some answers. But more importantly, I pray they are able to tell us how to help our boy.

These upcoming appointments for my kids are consuming me. Will these professionals be able to help us? If they are able to determine a diagnosis, what will it mean for my kids' futures? And how am I supposed to go about my daily routine, acting as though everything is "normal"?

On work days, I do my best to put my game face on because I have other people who need me. My patients are scared for their own health, and need me to be a source of calm and positivity for them. When I am home with the kids, I put a smile on and play Supermom. I try to soak up every moment with them, knowing full well that it could all change at any moment. It's not until the kids are asleep and my husband and I get to talk that I allow myself to unravel. Because even Supermom can only be strong for so long.

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