No matter how hard, he’ll never be this little: Advocating for your child, part 2

No matter how hard, he’ll never be this little: Advocating for your child, part 2

It has been a long road for Adrienne Fedorowich and her little man, Kashton. The nine-month-old has suffered from a severe rash almost since the day he was born.

“It was everywhere. His head was always really bad, his cheeks, his face, his eyelids, his arms, his side body, and his legs were the worst areas,” details Adrienne. She says at first she thought it was eczema. Their doctor recommended Aveeno baby lotion, which she tried, but I didn’t help.

Neither did all the different over-the-counter creams they tried. It got so bad sometimes, Kashton would scratch his head, and there was blood all over his crib.

“I remember picking him up one time, and I wiped the blood off the crib. I remember just crying. ‘I don’t know how to help him.’”

 

Because he was so itchy, Kashton would wake up more than a baby normally would, sometimes 8-10 times a night, and it became an exhausting, painful, and helpless cycle for he and Adrienne.

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“I’d be living off 4 hours of broken up sleep, and he’d be exerting so much energy from scratching that I wasn’t able to feed him enough, and then nurses were concerned he wasn’t putting on enough weight. I was concerned because they were concerned, and it caused me stress. He wouldn’t sleep, he wouldn’t nap, he wouldn’t eat, and he’d scratch and itch. I couldn’t help him.”

Read the first part in this series: Adrienne and Tansley’s story

She recalls they had to put mitts on him, swaddle his arms in and wrap him so tight so he’d sleep – otherwise he’d scratch himself raw every single night.

Adrienne and her husband, Josh, took Kashton to an allergist to do a skin prick on his arm, which came back negative. Adrienne was disappointed, as she’d been hoping for answers to solve the itching.

“’Great, he’s not allergic,’ I thought, but I feel like I’m back to square one.”

Health nurses suggested contacting a nutritionist, so Adrienne spoke to one before Christmas, who said it sounded like he has a cow’s milk allergy, telling her the only way to know is if you completely eliminate cow’s milk and all soy products from your diet.

“I got off the phone and I was beyond overwhelmed. I enjoy cow’s milk products, so the thought of eliminating them was, ‘Where do you start?’ And because we already have so many family allergies, many things already can’t have (nut allergy so can’t have almond milk, for example). We thought, let’s just sit on it, wait til the New Year.”

Following the baby led weaning approach, Kashton started some solids in January, and his parents immediately noticed a difference: his rash started to clear up, and he started putting on weight. He put on a pound in 3 weeks. Before that, he was putting on an ounce or less each month. He also started sleeping better.

Adrienne and Josh decided to ask the allergist to do a blood test, specifically for cow’s milk, wheat, soy, nuts, and sure enough, it was a cow’s milk allergy.

“This way I knew it without changing our entire family’s world. Since then, he’s not having any direct cow’s milk (yogurt, cheese) and I’m just more conscious of how much cow’s milk products that I’m eating. I’m not drinking glasses of milk as much,” says Adrienne.

Additionally, Adrienne took Kashton to see a dermatologist.

“She said the exact words that we had been feeling: Babies with extreme eczema, they don’t eat, and they don’t sleep. They are so itchy they literally cannot consume enough calories because of how much energy they are exerting scratching. I sat there, thinking, ‘I’m not crazy. Why hadn’t someone told me this months ago?’

“It was kind of my ‘Thank God I’m not a horrible parent moment.’”

They still put creams on him every once in a while, but they are able to catch any outbreaks and address it quicker.

As soon as his rash went down, he became a different baby. He was happy. He started meeting milestones (he has started crawling and has a tooth now).

“We looked at each other, and said, ‘That’s our baby.’ It’s so nice knowing he’s not in pain.”

Looking back makes Adrienne emotional.

“It was hell. I went back to work when he was three months old,” and people would ask her, ‘How are you doing it?’

“My mom had four babies, and she said, ‘How are you doing this?’ I don’t know, I just did it. You don’t have a choice, what are you going to do? There were a lot of days where we just looked at each other, ‘Is this how this is going to be? Because this sucks.’”

Adrienne felt completely helpless: you have no power to help.

“You see the struggle your child is going through and you have no way to fix it. Nothing is an immediate fix. Everything was temporary, if at all.”

On top of feeling helpless, she was often given the run around trying to get him the help he needed.

“I phoned (my doctor’s office) one time, and asked, ‘Can you just send me a referral to the allergist?’ And they said, ‘No, you need to come in.’

“I thought, ‘You want me, who isn’t sleeping, to pack up my non-sleeping baby, to see the doctor, so you can give me a piece of paper,’” recalls Adrienne. So she did, and Kashton was red head to toe, and the doctor didn’t even look at him.

Eventually Adrienne fired her family doctor, telling him his staff doesn’t takes care of her kids the way she needs them to. At one point, she had to beg him to send a referral to a pediatrician – Kashton never did get one, though Tansley did. During Tansley’s appointment, the pediatrician looked at Kashton, red from his head-to-toe rash, and asked, ‘Am I going to be seeing him, too?’

“How many doctors have I been to for him? There was a point between the two, we had a doctor’s appointment every week and sometimes two. That’s exhausting when he’s not sleeping and you’re not sleeping, and we operate three businesses.”

While Kashton’s health has improved, every day is still a balancing act.

“I’ve had to really think about that work can’t be 8 to 5 like it used to be. I’ve had to learn to be much more adaptable. I might have to work in the evening or weekend in order to get stuff finished. Kashton doesn’t always want to go to dad, unlikely Tansley, or even Grandma. That has been very emotionally hard.”

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Adrienne recognizes sometimes she just needs a break from always being needed, on top of dealing with health concerns for months.

“I don’t think I ever got depressed, but I got low,” and she says that is always a concern, since depression runs in he family, and she suffered postpartum depression once before when she lost a baby.

“Josh and I have frequent conversations about that for both of us. It’s been as hard on Josh, if not more, because he gets the brunt of it when I’m gone. He gets the screaming kid for 6 hours. When we’d go to the health nurses, they did postpartum depression checks on both of us. They kept asking us, ‘How are you guys doing, how are you managing, what’s your support system looking like?’”

Fortunately, Adrienne says they have support, and as hard as it has been, their situation is improving. And the hard times remind her how important the little moments are.

“I don’t want to wish away any moment. No matter how hard, he will never be this little. No matter what stage he is at, he will never be at this stage again. I can’t get it back.”

Adrienne Fedorowish is a prenatal educator in Warman, Saskatchewan. She and her husband, Josh, teach The Bradley Method and regularly run classes for expectant parents. 

 

If it wasn’t for us, she wouldn’t have help: Advocating for your child, part 1

If it wasn’t for us, she wouldn’t have help: Advocating for your child, part 1

Adrienne Fedorowich knows what it’s like to have to fight for her children’s rights.

While her daughter Tansley (two years and nine months) and son Kashton (nine months), have very different needs, those needs have only been addressed thanks to strong advocating from Adrienne and her husband, Josh.

Adrienne traces her daughter’s speech issues right back to the day she was born.

“She was born on a weekend, so she did not get her hearing test done before she left the hospital. I have kicked myself a lot about that. I don’t know if it would have fixed or changed the outcome, but it could have perhaps gotten us on a track sooner,” says Adrienne.

“I tell parents that should be one of your requirements that you must do before you leave the hospital because you never know.”

Tansley never had ear infections or hearing loss, so her parents never took her to get her ears tested. But because she had a plugged tear duct in her eye that was always weeping and goopy, they visited many specialists, and Tansley has had two surgeries in that eye.

Adrienne has a client (Adrienne runs her own interior design company) who is an ear/nose/throat specialist, so she asked him to look at Tansley. He found she had inconsistent fluid levels in her ears, which caused her not to be able to hear sounds consistently. Before she was two and a half, she had tubes put in her ears. Immediately afterward, Adrienne and Josh began seeking out speech pathology (they called directly to get a referral – every time she went to the doctor, Adrienne had to fight to get her daughter into a specialist). They now take Tansley to both public and private practice, because public can’t see you enough to make the progress they need.

“If it wasn’t for us, she wouldn’t have help. You can’t sit by and let your kids struggle.”

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Adrienne holding her son, Kashton, with her husband, Josh, who is holding Tansley. Photos supplied by Adrienne Fedorowich, taken by Finelite Photography and Design.

For Adrienne, it’s personal. She didn’t learn to read until grade 3, went to special ed and had tutors, and the experience wasn’t positive.

“If I can do whatever I can for my child not to have to go through that social anxiety, if nothing else, I will do it. It was horrifying when the teacher knocked on the door and (said), ‘Adrienne, you have to go to the special classroom.’”

When Tansley began seeing the private speech pathologist, she was saying about a dozen words consistently. Now she has between 50 and 60 words, and has started saying two and three word combinations.

It’s made a huge difference, but going to a private speech pathologist has been expensive.

“What are we supposed to do? Just give up? No.”

There are days that it’s really hard, says Adrienne, noting you see other kids her age speaking in full sentences. It’s emotionally draining.

“It breaks my heart that I cannot always understand my own daughter.”

Additionally, it breaks her heart when she explains to people her daughter is delayed because she doesn’t want to make Tansley feel bad. Adrienne points to a recent experience where Tansley needed foot x-rays. The technician walked in and greeted Tansley and asked her, ‘What’s your last name?’

“I was stunned. She doesn’t even know how to say her first name, and what kid would you expect to say “Fedorowich” – how do I explain to someone that she cannot tell you what her last name is without putting my daughter down and that she can’t tell you, ‘I’m scared’ or the anxiety she feels.

“I remember walking out of that room and I said to Josh, ‘We have got to figure out a better way of communicating to the other people a positive way of explaining what she needs.’”

The situation has been a lesson in slowing down for Adrienne and Josh.

“You can’t just race through things and expect her to be there. You’ve gotta explain things, you’ve got to make sure she comes along side you and you’re not leaving her behind, and that she feels as appreciated and as loved as any other child.”

That’s because she is.

“I don’t look at her any differently. She’s the damn cutest kid ever. When she smiles, all of this goes away.”

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Like mother, like daughter: both have smiles that light up a room.

Adrienne Fedorowish is a prenatal educator in Warman, Saskatchewan. She and her husband, Josh, teach The Bradley Method and regularly run classes for expectant parents. 

 

 

 

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