ULTIMATE SINGLE MOM INTERVIEW – STROKE AWARENESS MONTH–by Linda


Interview with Lori

Ultimate Single Mom

5/3/2015

1) Did you have a difficult pregnancy?

It ran pretty smoothly honestly. I gained a lot of weight but was also retaining tons of water. I had kankles! That was what put me on bed rest. A customer that was a regular where I worked was a nurse and told me to get to my doctor because my swelling didn’t look good. So on June 25, 2009, I went to my doctor for a spur of the moment check up. The nurse practitioner couldn’t find a heartbeat. She called the doctor in. She found one but a really faint one. So over to the hospital I went to be monitored and have an ultrasound. (I remember this day so vividly, we were watching the news on Michael Jackson, that was the day he died) After hours at the hospital my doctor came in and said she had some good news and some bad news. Good news is everything is fine, bad news is you have to stop working and go on bed rest starting today. That was fine with me! As I was getting huge and waddled around anyhow! Less than a month later, at 38 weeks and 3 days pregnant, Kaylee was born on July 21, 2009. I never realized while carrying Kaylee, just how high risk pregnancy is in general.

2) Are you a single mom? What has been your greatest challenge? Have you found assistance?

Yes I am! Hmm.. Greatest challenge. I think I have to go with acceptance. Not as in me accepting what has occurred in Kaylees life, but dealing with others accepting her. People can be so cruel and ignorant sometimes, it’s disgusting. If they don’t know, they assume and that’s the worst thing one can do sometimes. My family is my support system. They are wonderful. My Mom, Kaylees Nana, has been right by our side since the beginning.

2) Tell me about Kaylee, what was she diagnosed with?

After Kaylee was born, a whole bunch of tests were in store to figure out what was going on. It started in Hackettstown hospital. Right after she was born her apgar test results were fine, so no worries, right? That night the nurses told me I needed to rest and after having a c section I couldn’t really get up easily to change her so they we’re going to keep her in the nursery that night. I kept hearing a baby crying while dozing off and being wide awake. Then they came into my room with Kaylee. They tried everything with her to calm her down, even kangarooing her. She didn’t calm down until they placed her on my chest. All she wanted was Mommy! The next day her pediatrician came in to check her out again and he noticed she was a little blue. I didn’t think anything of it, I thought it was normal, being a first time mom I knew there’d be different things to expect. Not that though. Kaylee had sleep Apnea. It scared the crap out of me when it was explained to me what it was. Her doctor detected a slight heart murmur and called Morristown Memorial Hospital for them to come get her and monitor her in the NICU. Meanwhile, they took Kaylee to a small room and put her in an oxygen tent, talk about scary! Paperwork after paperwork, signature after signature, they prepped my baby for a little ride to another hospital. A team of 5 from Morristown entered that tiny room on the maternity floor so quickly it was crazy. Mind you, I was on pain medication from my c section so things were getting a little hazy. (I found out a few years after the fact, that Kaylee stopped breathing a time or two and they thought they were going to loose her) So off to Morristown she went for some more testing. A nurse practitioner noticed odd behavior and looked into it. Kaylee was having seizures, they immediately put her on phenobarbital. To take blood they did a heel stick and only had to move the bandaid for more tests. Crazy! The tests included.. An EKG, An EEG, a MRI.. That’s when they found them. Kaylee had had 2 strokes. One on each side of her frontal lobe. They called them infarctions. With her brain being tiny because she was just a baby, they looked like they took over that whole part of her brain. The one on the right side was bigger than the one on the left. Six days later, my baby was able to come home. Having no idea what would be in the days ahead besides tons of doctor appointments with quite a few specialists, all I wanted to do was to have my baby home and continue our journey with our heads held high. After a few visits to the Hematologist, it was determined that Kaylee had a gene mutation, a clotting disorder called MTHFR. My doctor told me that it wasn’t too common at the time and they only usually test for it if a woman has had several miscarriages. At Kaylees 3 month check up with her Neurologist, he was shocked. Based on her MRI at a day old, he was expecting an infant far worse than what he was looking at. He said he was expecting to see a baby in an almost vegetable like state. No harm was done by this statement because I knew he was in shock at this baby he was looking at. She was not what he was expecting at all. She had appointments every 3 months and at the 9 month appointment, that’s when a diagnosis came. I didn’t want it. I tried to talk it down, but it knew it was there. Kaylee has Cerebral Palsy, is what he told me. Kaylees clotting disorder led to her strokes, strokes led to seizures and caused CP.

3) With Regards to stroke awareness? What can you tell us?

It happens. It sure does. But amazing miracles come of it. It’s rare, but not all that rare. Kaylee had 2 strokes in utero and from my research on various websites and from reaching out to parents of stroke survivors on Facebook, 1 stroke in utero or 1 stroke during or right after birth are the more common types of infant strokes. This usually resulting in Hemiplegia, Hemiparesis or Cerebral Palsy. Before I had Kaylee I had only heard of an actor having one in childhood and the elderly having them. I didn’t know it was possible at all and man can it blind side you. Awareness is definitely key! May is Infant Stroke Awareness month and this website, chasa.org started encouraging people to “color streak” which is to raise infant stroke awareness anyway possible, spread the word. Purple is the Pediatric Stroke Awareness color so lots of purple is worn, hair is dyed purple, various ways to spread the word. Just getting the word out there that this is possible is a great thing. Advocate. Educate. Tell the stories of the people you meet, they are inspiring!
As far as stroke statistics, I’m not a doctor by any means. But I can educate through our experience. There’s no way to prepare, and probably no way to prevent either. It all depends on the circumstances in which the stroke occurred. According to chasa.org, ” risk of strokes is highest in the first year of life and peaks a few weeks before birth and a few weeks after birth.” My doctor believes that’s when Kaylee has hers, just a few weeks before birth. Talk. Start up a conversation about this. You may be helping someone is ways you never imagined.

4) I know that you’ve done some fundraisers for Kaylee, can you tell me what they were? Which one was the most successful? Do you have any coming up?

In august 2010 when Kaylee was a little over a year old, Chilis in Mt. Olive hosted a dine to donate and there was also a car show hosted by friends that took place in the Holiday Inn parking lot in Mt. Olive as well, around the same time. At that one we sold Kaylee bracelets which are available anytime for $1 each. Over the years I’ve hosted Tastefully Simple, Silpada, and UsBorne Books, home parties and a certain percentage has been donated to Kaylee instead of me receiving products from orders made. A friend in the real estate business sold Kaylee bracelets to friends and family all over the US and overseas. That was in 2011and was one of the two most successful ones. The most recent and most successful one was about a year ago. This company called Firefly was making a brand new product called an UpSee. I searched the website and saw nothing about them accepting insurance. This product was big and popular in the special needs community, but not yet available for purchase. I asked around and a few of the parents went the online fundraising route so I checked it out too. Whoa. The amazing outpour of love and generosity from family, friends, and even strangers, in just about 3 days, was completely amazing!! The amount needed for the product was greatly exceeded which allowed for the extra to go towards socks for Kaylees braces, and medical bills so far. This awesome fundraiser allowed me to purchase the UpSee for Kaylee, which makes her able to stand upright and experience walking without me holding her under her arms. She has a harness that hooks onto a belt that goes around my waist, and we have a shared footplate, so that when I lift my foot to walk, so does she! She gets to experience walking hands free! It truly is amazing!

5) What would you say to another mom out there perhaps in a similar situation? 

To be honest, I might go a little religious on you here… But the key, Be strong. You will get through this and so will your child. Everything is a learning process. Have faith, stay positive. If you don’t have the scientific answers as to why your child is going through this, just know that you are never given more than you can handle. Everything happens for a reason and no matter how messed up that reason may seen, you are doing exactly what you are meant to be doing. You will have your moments too, though. Anger, frustration, sad, scared, horrified even. Moments you feel like a break down is near and just want to cry and cry and cry because you don’t understand why. You are going to get angry as hell. You are going to get sad as hell. You are going to be happy as hell! Embrace it! Embrace every ounce of every experience to the fullest! You may have a shoulder to cry on but you will go through periods where you feel completely alone in this journey. You are not! Trust me when I say this. Family, friends, colleagues, spouses.. Even online groups too! You may find support in ways you least expect. You may “loose” some friends and family along the way simply because they don’t know what to say to you or how to act or they feel bad because their kid the same age is flying through their milestones.. I’ve just chalked this up to ignorance over time. Bonds will be made as well as broken. You will probably change because you have to to a degree. Don’t ever, ever compare your child to other children their age, ever. Even if you have older or younger children too. Every kid does his or her own thing in their own time, what they can, when they can, how they can. Sometimes you can’t take any advice though.. You just have to go through it and make your own story as you go. Take it day by day.

6) What has been your greatest moment? As a mom? As Lori?

Every moment is a gift. A true blessing. When I held my little girl for the very first time it was so magical. Perfect. Every milestone, every word, every moment of comprehension she has. Nothing is taken for granted. All of her accomplishments are huge, great moments!
I went to school for Art and honestly haven’t done much work since I graduated college. But my finest masterpiece, by far, calls me Mama.


7) Do you find time for yourself?

I do.. It’s there. I just choose to spend the time with Kaylee instead.

8) where is Lori 5 years from now? Where is Kaylee 5 years from now ?

As I type some of my answers, I’m watching Kaylee in front of me at a physical therapy session. So where do I see us in 5 years? I am 100% hopeful in Kaylees abilities to do great things. I see her walking next to me, holding my hand, not a care in the world. Enjoying childhood to its fullest. Running, skipping, playing. Riding a bike! I have hope and faith in my little girl that she will move mountains! Her possibilities are limitless! 🙂

**Please help support Kaylee and purchase one of these bracelets.

http://www.facebook.com/pages/Show-me-your-Kaylee-bracelet/174663582571086?fref=ts

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