Special Needs Spotlight || Nathanial

Hi Miggy!  Thank you so much for having us on your spotlight!  My name is Katie Yohe, and I have one son, my most cherished blessing, Nathanial.  Nathanial just turned 3 in May.  We are also extremely lucky to have my  mother, Bonnie, living with us. Nathanial was born a healthy, beautiful baby, but at 4 weeks old he stopped breathing. He was diagnosed with ALTE (acute life threatening event), apnea, and severe reflux. He spent the next 15 months on heart and apnea monitor, along with multiple hospitalizations and a second ALTE. I realized we were dealing more with reflux once he started solids, and was diagnosed with FPIES (food protein induced enterocolitis syndrome). Our lives were again turned upside down when Nathanial was 18 months old and suffered a traumatic brain injury, resulting in a myriad of problems. Nathanial is an absolute warrior. If he falls down 7 times, he gets up 8!

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Miggy: Katie, thank you so much for being here today and sharing your son Nathanial with us. You are in a unique position of having a child who was born with various medical needs and then having that same son suffer from a traumatic brain injury causing a whole new set of issues. So lets start with Nathaniel as a baby and the conditions he was born with.  How old was Nathaniel when you realized something wasn’t quite right?  What were the warning signs and symptoms and how quickly did you receive help and/or a diagnosis.  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Katie: The first time we knew something wasn’t right was when Nathanial was about a week old when he would projectile vomit after every feed. I took him to the pediatrician and he was diagnosed with reflux and put on medication. They told me it would improve with age. At 4 weeks old while at the grocery store, Nathanial stopped breathing, turned blue and his eyes fixed upwards. He was rushed by ambulance to the ER and admitted, where they found that he has frequent episodes of apnea, periods of bradycardia after eating, and believed those two things were related to the episode we witnessed, and diagnosed the incident as an ALTE (acute life threatening event, or near-SIDS), and milk-soy protein intolerance (MSPI). He was placed on an apnea/heart rate monitor and we were discharged several days later. He had a second ALTE at 3 months old requiring hospitalization, and many, many days and nights on edge with his monitor constantly going off requiring stimulation to get him to breathe. It was a terrifying 15 months.

At 6 months old we attempted to start solid foods. I still remember feeding him his very first food–carrots. Within 15 minutes his face was covered in a rash, and within 2 hours he was violently vomiting. We hoped it was a virus or a fluke and just avoided carrots. Unfortunately that wasn’t the case. Every food we tried he vomited and had severe diarrhea, many times to the point of dehydration and shock. At 9 months old we thought he caught a stomach virus, and due to dehydration we ended up in the ER several times. By the 3rd time he was admitted. It wasn’t a virus. It was FPIES (food protein induced enterocolitis syndrome). His body was in a histamine overload and was fighting itself. He had intussusception of his intestines causing a bowel obstruction due to enlarged lymph nodes, he was urinating and pooping blood, his kidneys and liver were fighting to keep up as his body continued attacking itself. After 2 weeks in the hospital, having an NG tube, eliminating all foods, multiple tests, CT scans, colonoscopy, endoscopy, etc., they determined that they would try a course of steroids. And God willing-it worked! My sweet baby, that dropped from a healthy 20lbs down to just under 13lbs started fighting back, and like this little warrior always does, he won! We were forced to eliminate solid foods, and keep myself on an elimination diet due to breastfeeding to get Nathanial to baseline and gaining weight again  By 12 months he had one safe food, and now at age 3 he has about 12.

When Nathanial was first diagnosed, I was terrified.  I was afraid to step away and use the bathroom. I lived in constant fear. Anything involving food was a nightmare. Play dates were basically out of the question, as the few we tried ended in allergic reactions. I was also mad.  And frustrated. Why my baby? I definitely went through a grieving period. Now, it is just part of our daily life. We are lucky that he has more safe foods now, and that his weight is in a good range. He does still rely on breastmilk for nearly all of his nutrition, as he only eats about 200-500 calories a day in solid foods. I haven’t really known any different, so we just go with the flow.

Miggy: Fast forward to when Nathanial is 18 months old and he falls and suffers from a traumatic brain injury. What happened and how quickly did you realize this was going to change your life?

Katie: This day continues to haunt me. I have so much anger and bitterness still. Nathanial was visiting his dad’s house, and unfortunately was left unsupervised briefly. Nathanial fell backwards down the stairs. He was acting fine initially and was consolable. It was several hours later that I knew something was seriously wrong. I work as a paramedic and know the signs to watch for, which is why I didn’t initially rush him to the ER. Within hours of the fall Nathanial was acting lethargic. He fell asleep in the car, and was difficult to rouse. Even picking him up out of the seat he didn’t flinch. I immediately took him to the hospital, where he was diagnosed with an intracranial (parenchymal) hemorrhage. He was taken by ambulance to a larger children’s hospital to be evaluated by a neurosurgery team. Luckily the bleed didn’t continue to progress, and we were discharged on the second day. When we got home I realized he wasn’t walking right, and after another ER trip he was diagnosed with post concussive syndrome. He had some “staring” episodes but slowly he got back to his normal self.

Fast forward to when Nathanial was 32 months old (14 months out from the TBI) and other symptoms started appearing. He was having a harder time sleeping and having jerking episodes at night. His staring spells increased, and then he started having what we know now are myoclonic jerks. He had an MRI and EEG in March which confirmed our fears of epilepsy, and showed deposits in his brain from the previous hemorrhage. In April, he had his first of multiple tonic clonic seizures. He has not had a seizure free day yet. On an average day, he has anywhere between 6 and 30 episodes when he is awake, and 15-20 overnight. His doctors haven’t found the right medications for him yet. He has 7 types of seizures–absence, myoclonic, nocturnal, tonic clonic, atonic, tonic, and complex partial. This month his neurologist brought up that she believes he has Lennox Gastaut Syndrome, which is a combination of intractable seizures, developmental delays, autism like symptoms and behavioral problems. Nathanial has deteriorated more in the past 2 months than we have seen altogether since the injury. He has trouble walking, hypotonia, feeding disorder, mixed development disorder, and sensory modulation dysfunction. He was just fitted with orthotics to help with stability, and was also fitted for an adaptive stroller/wheelchair.

I think it was really in March of this year that I realized this was a completely life changing injury. I thought we were one of the lucky ones initially after the TBI. Unfortunately, that wasn’t the case. I think a part of me was in denial, and he would have had a diagnosis of epilepsy sooner had I realized the staring spells were seizures. Nathanial’s father is still in denial, which I think is partly due to the nature of the injury. I’m hoping with time he will be able to come to terms with the new normal. The past couple of months have been the hardest and I’m still coming to terms and learning how everything is affecting our lives. I don’t know what the next week or month will bring.

Miggy: Will you explain how Nathanial’s needs affect your day-to-day life, both from the allergy/FPIES/ALTE/Speech delay point of view and also from he TBI point of view?  Do you even think of them separately, or do you approach it more holistically as “This is just Nathanial and this is who he is.”?

Katie: Wow that’s a hard one. The diagnosis of FPIES and allergies have taken the back burner. I still carry epi pens and benadryl everywhere, but it has just become our normal. I am still that paranoid mother when we are around anyone eating though! His ALTE seems so long ago, and although I can feel the fear like it was yesterday, I guess so much has happened since then that it hasn’t been a worry for us anymore.  What affects our days the most are the TBI and developmental delays. His speech has almost caught up to be age appropriate. Nathanial eats very little solid food, and can’t use a spoon or a fork properly yet, so the food he does eat, he either picks up with his fingers (only dry crunchy food), or I have to feed him with a spoon (the rare coconut yogurt he eats). Our days start and end with a ritual of medications, which almost always involve some form of bribery because they taste awful. His behavior has been greatly affected and he has frequent meltdowns, and all of his emotional responses are magnified. He cannot sleep alone due to the frequency and severity of the seizures due to the risk of SUDEP (Sudden unexpected death in epilepsy), and he wakes frequently, which means neither of us get good sleep, and I’m frequently laying in bed awake with him from 7pm on. He can’t sleep without medication to make him sleep. Going out in public means wearing a pressure vest (on really hard days), dealing with the stares and harsh words from people about his behavior. He also wears a helmet to protect his head due to the seizures, and because of frequent falls. Everything we do has to be done on a visual schedule or he gets very dysregulated and upset if we aren’t doing things in order. We spend a huge part of our time at therapies and doctor appointments. Because of his behavior problems and such frequent seizures we are limited to very few play dates and interactions with other children which makes me sad. I’m struggling internally with the TBI because of anger. Because it most definitely could have been prevented. I’m working on it though. In the end, this is Nathanial, and no matter what he is still my perfect little boy. I’ll be honest that I’m still grieving our previous life.

Miggy: What are the biggest worries you face for Nathanial?

Katie: My biggest worries are seeing him regress. I’m afraid of the diagnosis of Lennox Gastaut Syndrome, but I think his neurologist is right.  For the doctors not being able to find a medication or treatment that will help him. That his seizures will continue to worsen. I already know that he will be in an adaptive stroller/wheelchair at least part time and I’m coming to terms with it. I worry that he will struggle in school. I worry he will have a hard time making friends because he’s different, although he really does have the most captivating smile and personality, so I hope children (and adults!) can look past his disabilities and see how amazing he is. I’m trying not to worry about the extended future, but sometimes it gets me when I’m having a hard time. Will he ever drive? Will he ever go to college? Get married? Have children? For now, I’m just focusing on him doing well in early childhood preschool and hopefully making some friends!

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Katie: I think it’s amazing how Nathanial is dealing with everything.  He was super stoked to get his helmet. He is obsessed with Thomas the train, so he calls it his Thomas helmet.  Everywhere we go he asks anyone he sees, “Do you like my helmet?!”  It’s almost always the things he has to say that make the situations funny and easier to deal with. When he was fitted for his adaptive stroller/wheelchair, he said “It’s my super stroller!!! It’s THOMAS blue!!!”  He was quite disappointed that his orthotics don’t come with Thomas so he had to pick a different design!

Miggy: How can people best approach or respond to Nathanial? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Katie: I think just treating him like you would any other child. He gets a lot of stares, whether it’s because of the helmet, or because of a meltdown, or because of a seizure creating a scene in public. Nathanial at this point doesn’t notice the stares. He doesn’t notice the hurtful words. He doesn’t understand when someone is making fun of him, so I thank God for that.  I’m the one that gets upset over it. We even had a lady yell at us because we had a stroller in a zoo exhibit that doesn’t allow strollers. Not a single person stuck up for us, even knowing looking at him that he has special needs. I wish people would just engage with him. He’s very social! I wish they would ask questions instead of just staring or making comments to each other, usually loud enough that I can hear them.

I want people to know that it’s okay to ask questions!  It has become a passion of mine to spread awareness, especially about traumatic brain injury and epilepsy.

I want people to know that we don’t want pity. There are times when a helping hand would be awesome, like during a meltdown at the grocery store, or when he has a seizure in public.  Just ask if you can do anything. Offer to head off the crowd of people. Offer to get a pillow or something for under his head. Friends and family to offer to grab something from the store, drop off a meal, or send a card to brighten his day.

Most of all I want people to know how blessed I am to have Nathanial as my son.  He is the absolute light of my life, and he would bring so much joy to so many people if they just let him.

This is his page on facebook, where you can follow his story and see his videos, and hear his precious laugh: Nathanial’s Story. He also has a page for fundraising at Nathanial Strong! Fighting against traumatic brain injury.

Miggy: What is the biggest lesson you’ve learned since becoming Nathanial’s mom?

Katie: The biggest lesson I have learned is to never give up. Never give up hope, never give up fighting, and never give up believing. God has a plan for each and every one of us, and in the end God’s plan is perfect, even if it’s not the path we thought we were going to take. I have learned that to get what your child needs, it might be an uphill battle, and you have to be your child’s biggest advocate and supporter. I have learned to be grateful, and to celebrate the smallest of accomplishments. I think that is a blessing that special needs parents have that a lot of other parents don’t. We celebrate when Nathanial even smells a new food. We celebrate when he can run 10 feet without falling. We celebrate every day that he doesn’t have a tonic clonic seizure.

I have learned to be thankful for every single day. Of course I still have days that I cry, that I don’t want to get out of bed, and that I’m upset with our situation. Nathanial has overcome so much, and has had so many scares where we didn’t know if we would have a tomorrow with him. But for now, we do. It’s never guaranteed. And we try to make the most out of every day, even if that just means extra snuggles!

I have learned that family and friends are everything. I don’t know what we would do without my mother being here to help with Nathanial. I have lost a lot of friends since Nathanial’s injury, and even more have distanced themselves, although not completely lost. When you find a good friend, you grab on and never let go! Finding online communities with families that are going through similar struggles have been something that have helped considerably, and I am so happy to be a part of their community and to call them my extended family.

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