Learn about Lexi

This post will be filled with lots of links that you can click to better understand Lexi's medical condition and as well as a mini Q and A. Click on the enlarged (bolded and linked) text to learn more about each topic.

CHASA: Children's Hemiplegia and Stroke Association. Strokes occur  in 1/2800 babies, and 1/100,000 children. 50-80% suffer disabilities, 20%-40% of pediatric strokes are fatal. There is a 50% chance Lexi could have a stroke again by the time she's 5 years old; it decreases from there.

Pediatric Stroke: Lexi is a pediatric stroke survivor! She suffered from a stroke in 2010, sometime after she was born (6 weeks or so), resulting in an internal brain cyst, brain damage/scarring, and disabilities. Most people don't associate strokes with children, but kids have strokes, too! Her specialists and doctors are unsure when exactly Lexi's stroke occurred, or what caused it. We've been told by doctors that she was extremely lucky to not be physically affected as much as she should have been from the size of her stroke. Pediatric Stroke is her main diagnosis, along with Hemi & CP. The stroke is what started it all.

Cerebral Palsy (CP): Lexi has minor CP on her Right Side. CP means that Lexi struggles with development and motor control. This is what classifies her as disabled. CP goes along with the Hemiplegia/Hemiparesis, listed below. Most people who have CP will have their arms and/or legs pulled in towards their bodies due to tightness in the muscles. Lexi does this especially with her first and arm, although it has gotten tons better in the last year or so. CP is her main diagnosis, along with Hemi and Pediatric Stroke.

Hemiplegia/Hemiparesis: Lexi is classified as being hemiplegic/hemiparesis. This means she has weakness/slight paralysis on her Right Side. She has less feeling on her Right Side because of this as well. This also classifies her as disabled. Hemiplegia/Hemiparesis is her main diagnosis, along with CP and Pediatric Stroke.

Seizures:  This has been the most common topic people have asked about. Lexi has had seizures in the past, and has had lots of seizures in the past few weeks, all varying in intensity. Most of her seizures are minor, although she's had a few more intense ones as well. Lexi doesn't really realize when her seizures are happening and she is unable to control it. The seizures were she is partially conscious are called temporal lobe seizures, varying in intensity. She has absence seizures where her brain just checks out and she doesn't respond to you. She has had one "grand mal seizure" that we know of (essentially the "stereotypical" intense one). Seizures are typically treated with medication, but Lexi is currently not on any; her doctor(s) say she might need to be on some for about a year if her seizures continue. The more seizures Lexi has, the greater chance she will have more and more. After her grand mal seizure a few weeks ago, she got an MRI to check to see if her brain cyst area was stable; it was, but they found that one of her lobe/vessels was bigger/more swollen than the others, so they think that either it just looked that way next to her brain damage, or because she's growing, or (most likely) it's what's triggering the increase in seizures (reason unknown).

Therapy: Lexi attends physical therapy as well as occupational therapy 2-8x month. Physical therapy works her trunk (core area) to toes, and occupational therapy deals with her trunk to her fingers. Lexi also attends a specialized therapy session/evaluation once every couple months. These are located in Pediatric Rehabilitation Centers in Orem and Salt Lake City. Lexi also participates in Constraint Induced Movement Therapy which isolates her right hand, forcing her to use it.

Orthodics: Lexi receives orthodics, or braces, to assist her with her disability. She doesn't have to wear these 24/7, but very frequently. She has two different leg/ankle/foot braces, and one thumb brace/splint. She is currently wearing one leg brace and one thumb brace daily to assist with stability. Her leg braces, Dafo 2 and Dafo 9, are customized to fit Lexi's foot/leg/ankle. Her thumb brace (we call it her High Five Brace) is fit to her as well, though not specifically customized for her hand. Lexi has to wear 2 different sizes of shoes while wearing her braces, and always has o wear shoes while wearing her brace.

Botox Treatment: Lexi receives Botox Treatments on her Right Side every 3 months. She is put under general anesthesia during this time. She receives injections in her Right thumb, hand, forearm, pec, bicep, gastroc (back of calf), hamstring, ankle, etc. These Botox Treatments essentially kill the nerve/muscle (temporarily) and so it makes it easier and more comfortable for her to move, stretch, etc. She will be receiving her 4th round in a couple weeks.

Effects on Behavior:  Lexi is probably going to be the happiest little girl you'll ever know! She is very well behaved, and so dang cute! However, sometimes she has meltdowns, or explosions, when she is struggling to comprehend her feelings and emotions. This doesn't necessarily mean that Lexi has a behavioral disability, just that she lacks skills (from her brain damage) that other kids typically have.

Lexi's Struggles: It's interesting to observe other children who are Lexi's same age, or younger, do things that Lexi can't do very well, or even at all. The simple things like holding a cup, clapping, running, using 2 hands at once, stairs, and other normal activities are a struggle for her. She does great though, and is a very determined little girl. It's a small victory when Lexi sits criss-cross-applesauce, or she picks something up with her Right Hand.

Support Groups: I am involved in a few support groups and forums:. CHASA: Our Happy Place, where we share victories of our kids from all over the world; Hemi-Kids/Pediatric Stroke Survivors, a general forum with questions, answers, ideas, etc. from all over the world; CHASA Utah, a small group that is specific to Utah families and/or individuals that have suffered Pediatric Stroke; CHASA Babies & Toddlers, discussion forum like Hemi-Kid from all over the world; Hemi-Kids Digest, a email forum from all over the world. We will be having a CHASA Utah Family Party in August where we can all get to know each other, and the kids have friends who are in the same situation.

Lexi's Specialists, Doctors, & Therapists: We are very lucky to have such great people that work with Lexi. Lexi sees Dr. Susan Benedict, who specializes in pediatric stroke at Primary Children's Neurological Center; Lexi sees her 2-6x year.  Ben is her Physical Therapist, whom she has been seeing for a year and a half and she just loves him! Brian is her Occupational Therapist, and has been seeing him for about a year. Both of these men are top in their field. Dr. Judy Gooch/Beverely Krensky are her Primary Children's treatment (botox) therapists.

How did you find out Lexi had a stroke? We found out by accident actually. She went in for a CT of her brain, checking for crainiosynostosis (plates in skull closing prematurely), and they found the cyst on her brain, indicating a recent stroke. From there, we met with neurologists, neurosurgeons, etc. and she received an MRI to get a better picture of her brain. We are so grateful to the nurse at UVMC who sat us down right after they found it on her first CT scan, instead of waiting hours before the doctors could read it. That's definitely a day that we will never forget!

What do they think caused Lexi's stroke? They are unsure the exact cause. Lexi went through a lot of testing to find out, but they were unable to pinpoint it. Terrell and I also went through testing to see if it was a genetic thing. Obviously, it was a blood clot in her brain, but that's as much as we know. Lexi had to go through weekly blood tests last year to monitor her blood consistency, etc.

Does that mean Lexi is behind developmentally? Not really. She's smart as all get out, and capable to boot! She does have developmental delays in her right side motor skills, but we were extremely blessed that Lexi wasn't affected any more than she was. She does so well that most people can't tell right off that she has a disability. Recently, we were told by one of her doctors "Honestly, you guys were very lucky with how severe her stroke was." Phew!

Does Lexi have any other problems? Lexi is allergic to cows milk protein and soy protein which causes some problems in her eating! This is why she is so small. She pretty much couldn't eat for  the first 4 months of life as we were trying to figure out what she could it. She was in newborn clothes until almost 4 months old! Now, Lexi can tolerate small amounts, but, say, if she eats macaroni and cheese for lunch, she can't have anymore "dairy" products. It's a lot better than it used to be, though! She is also allergic to peas, just like her daddy, and yes, it's a real food allergy! Because of her food allergies she struggles with acid reflux, but luckily is not on any medicine for it right now. Her stroke also caused her to have a sensitive gag reflux so she gags/chokes more than the average kid.

How does Lexi's puppy help her with her disability? It's called a therapy-dog/therapy-puppy and does wonders for people with disabilities of any kind. We just got the puppy, so we are new to this therapy, and are unsure if we will be continuing with it (cuz I'm stressed out!). Overall, having a puppy helps Lexi do therapy without her realizing it: walking him on his leash, helping feed him, playing with him, petting him with Right Hand, picking him up with 2 hands, etc.

What are some of Lexi's therapy activities and/or at-home activities?  This question is probably one of the most frequent questions asked. At therapy, Lexi does one-handed activities (see above, Constraint Induced Movement Therapy) like picking up toys, trying to grab something out of a box, playing with balls, etc. She also kicks soccer balls, works on the balance beam, climbs stairs, walks in the grass and up hills, practices fine motor skills, swinging, strengthening, stretching, etc. One of the most common things Lexi does at her PT is walking up and down stairs. At home, we try to incorporate every day activities into her therapy program, such as doing a puzzle with only Right Hand, or giving a High-5 with Right Hand. She jumps on her trampoline a lot to strengthen her leg, foot, and ankle, rides a scooter, does silly obstacle courses, does some Yoga, works with her Sensory Bag (objects varying in texture, shape, weight, size), and other such activities. Lexi participates in gymnastics at The Little Gym and it has helped her so much. Those are just a few activities she does. She has a sticker chart that she puts a sticker on for each therapy activity she does, and when she reaches the castle - - - PRIZE! :-)

Does Lexi have specialized equipment? Aside from her Dafos/braces, Lexi uses a few things that other kids don't. She has immobilizers, casts, Kinesio tape, Co-flex bandaging, Thudguard helmet, and other various braces to help stretch. At therapy, she uses equipment such as a baby wheelchair, tumbleforms, and other therapy equipment. She also has a mini-trampoline, a scooter, and other various everyday items used for her therapy.

So, can Lexi still feel things on her right side? Lexi has decreased sensation/feeling on her Right Side, so she can't feel things as well as she should be able to. It will probably always be this way. Her sensory output on her Right Side can start to fix itself, but it could be years and years from now. Her sensory output has increased since she began therapy almost 2 years ago.

Where was Lexi's stroke located? On the left hemisphere of her brain, back half, thus affecting her Right Side (specifically motor skills). If looking at an image of her brain, it would appear darker and smaller and look to be about 1/4 of her brain. This part has the cyst, and the scarring, and will always be damaged. Because she is so young, her neuro-transmitters from that location are doing a great job rewiring and rerouting themselves to other areas of her brain.

What does all this mean for Lexi; what are the long term effects? Lexi will have a harder time with some things than other individuals. Some things that aren't hard for normal people, are, and will be, harder for Lexi. Her head will always be smaller. Lexi will always struggle with her Right Side. As she gets older, we will find out more.

How does Lexi handle her condition? Amazingly well. She is one tough girl and such a trooper! She doesn't know any differently, so she has nothing to compare it to. She was blessed with a happy demeanor, and the ability to handle her trials and we have definitely seen it. She does have her fair share of crying and stubbornness regarding therapy or doctor's visits, which is to be expected, but overall she rocks. Even though she can't do things like the other kids, or not as well, she still plugs along!

Why Primary Children's Medical Center? Primary Children's Hospital is one of the best children's hospitals in the country and we are so lucky to live nearby! PCH was ranked #33 for Pediatric Neurology/Neurosurgery, and highly in every other aspect as well.

Is it genetic? Terrell and I did rounds of testing to see if it was genetic, or a combination of our genes that caused it. They didn't find anything indicating that it was genetic, so, no, we don't think it is genetic.

What are the "awareness colors" of Pediatric Stroke and her other conditions? Pediatric Stroke is symbolized by blue and purple, or, if only one color is present, it's purple (hemiplegia). CHASA has a "mascot" that is a penguin (perfect for Lexi) named Kandu. Cerebral Palsy is represented with the color green.

How can I help? Wear a "Kids Have Strokes, too!" bracelet. Tell people about it. Write it on your car, research it, become informed. Ask questions so you can give answers. Ask your local government to officially declare May as Pediatric Stroke Awareness month. Wear a t-shirt, button, necklace, or sticker. Volunteer. Streak for Lexi (click the link to explain). Put a ribbon on your car. :-)

Can I donate?  Yes! CHASA takes donations and has great fundraising/awareness ideas, as well as Primary Children's Medical Center or any other pediatric hospital. You can donate in honor of Lexi, or someone else you know. You can also donate directly to Lexi by using PayPal, kfrederick27@hotmail.com and specifying "Lexi Stroke Donation" in the memo/subject.

I've been dreaming of a true love's kiss!

Doesn't she look like Giselle or Rapunzel?!
By the way, her true love's name is Fox.

This is us.

Terrell has been travelling every couple weeks for his races. They are going well, but he gets pretty exhausted! We miss him when he's gone but we are grateful that he works so hard for us! He has started to ride his road bike to work every once in a while to get back into his biking mode and will go on a few shorts rides here and there. He just celebrated his 27th birthday and we had pizza, drank pop, ate cupcakes, played games, and had friends over. We also celebrated Father's Day yesterday and he is one cool dad! Lexi loves him so much!

As for me, I'm the same every time! I've been having domino effect of bad things happen but it seems to be on the up-side now! I'm going to start focusing on running now and not necessarily losing weight. I decided that focusing on just getting fit will be better for me than focusing on my weight loss or lack thereof. Hopefully I'll stick with it and will start doing 5K's and such. I really want to do the 10K run down in SeaWorld in October but we'll see! (meaning...not likely!) I'm loving having such great friends here in the condos and we pretty much spend tons of time together. Thanks ladies! (haha Tara...lady!! hahahaha) I just read the first 2 books in the Divergent trilogy (Divergent, Insurgent) and LOVED them. I can't wait for the last one to come out! I'm currently reading The Explosive Child to help me better understand what I can do to help Lexi. Lexi told me today that my permanent worry line in my forehead today was an "owie" and made me realize that maybe I need to de-stress better! :-)

Oh, Lexi! So much to say, so little space to type! I will post more details on a different blog post for her update, but here are a few: Lexi has been trying on her potty, and will tell us that she needs to "try on my potty" before bed and always goes! We're trying not to force it so hopefully the transition will go smoothly. She is a total goof-ball and still loves her tu-tu's, dancing shoes, and dress up stuff. She plays Barbies every day, rides her pink scooter, and sings songs at the top of her lungs. She gets her new leg brace on Wednesday and chose pink, pink, and more pink, with the strap design of lips and hearts! What a girl! She recently participated in the Orem Summerfest Baby/Toddler Contest, and I will post about that later. She's been struggling lots lately and has had tons of seizures. She had an MRI last week to check to make sure her brain cyst is stable, and I will post more on all that on a different blog post. Lexi loves playing with her friends Corban, Zander, and Fox and thanks Heavenly Father for them in every prayer! She loves to play in the water in her swimming suit and burns like non-other. We have to plaster that girl with sunscreen!


Together as a family, we've been having late night neighborhood fire pit BBQ's and  loved it. We recently got family pictures taken by the lovely Janelle Smith and they turned out real cute! Good thing I have such a handsome husband and adorable daughter! All in all, we're loving where we live, the friends that we have, the Gospel of Jesus Christ, and our rockin' family! Even though life is definitely tough, we are grateful for the life we have!

Oh, what a night!!

Thing went fairly normally as Lexi was getting ready for bed - stories, songs, bottle, binky, snuggling, getting tucked in. I watched some Grey's Anatomy while I worked on a few projects, and then put in a Yoga DVD to wind down before bed.

Then Lexi woke up screaming screaming screaming.

I run in there and she's having another "attack", but this time it's so more intense, just...strange. I picked her up and carried her to our bed to make sure she was in a safe place where I could sit with her and tried to calm her down. All to no avail, though - it went on and on. I ran and grabbed the camera to try and record some of it, and I started to panic! This one was totally different than other "attacks". I called Terrell (he's out of town) and then Lexi started doing even weirder things. Her mouth was pulling in a weird direction, and it was twitching, all the while she's screaming, arm spasms, yelling NO, then going "stiff as a board" and then continued with her weird twitching.

Okay, break down time.  I started bawling and didn't know what to do. Why the heck does everything happen when Terrell is out of town!

I was still on the phone with Terrell, which is good, because I did NOT know what to do. He made me go over and get my friend and neighbor Whitney (you're the BEST!) which I was grateful for! She helped calm me down and is really knowledgeable about medical things so she was a big help. He also called Lisa & Derek so Lexi could get a blessing.

Her left pupil was dilated, but not her right one which was very strange. She was also chewing on her tongue and had a slight head bob. Can you say worrisome?

We decided to take her to the ER just to be safe, because you just never know. When I got in the car, I started hyperventilating...I took a chance and called my mom in Iowa, hoping she'd answer the phone - and she did! PHEW! I couldn't breath, and just hearing my mommy's voice helped a lot! Thanks, Mom!

We got to Timp Regional around 12:50am and, of course, we were the only ones there so we were admitted right away. They hooked her up to the heart rate machine and the blood pressure machine and she stayed on that the duration of our stay. They drew 2 vials of blood, and took a urine sample to rule out viral infections triggering a seizure-like thing, which all came back OK. She had an IV put in so after her blood was drawn, they flushed it with fluids and stuck in an IV for a little while. While the nurse was taking it out, it kept moving around and Lexi kept saying OWIE OWIE! As soon as it was out, it bled through the gauze in about 2 seconds so we had to rewrap it and make it tighter to stop all that bleeding! Good thing the co-flex was pink! :-)

The nurses were so cute and gave Lexi a kitty to hold. She loved it and told us a kitty said meow (through her screaming and crying...too cute!) We had to wait about 30 minutes for the results (above) and so I busted out Netflix on my phone (thanks JD!) and we watched SuperWhy which Lexi thought was cool.

The doctor was really sweet and called her "pretty girl". He decided that since her results from the viral infections were all OK that they would send us home. However, he really wanted to get imaging done up at Primary Children's Hospital because of how weird/intense it was, so he gave us a prescription for an MRI up there, so in case there is something different about her brain cyst, we're already up there. I'm currently waiting near my cell phone, waiting for the Primary's imaging department to call and let us schedule her MRI. I'm unsure if I want it NOW or if I want to wait until Terrell gets home on Monday. We'll see.

When we got home, all the sudden Lexi had this burst of energy; she was running EVERYWHERE and giggling and saying really silly things. It was like she was in shock with an adrenaline rush or something! She got out all her mermaid toys and was tapping them together yelling "CHEERS!" (what she says when something matches...weirdo) and giggling. My thoughts? Man this is going to be a long night...I mean morning...or whatever. 


I finally got her calmed down enough to get some medicine in her, and directed her to our bedroom so she could sleep with me. We finally headed to bed around 3/3:30am and we were exhausted!

Thanks for reading this post - it was mainly a "journal" type thing for me so I could have this documented! I'll post more as I know it!

"I'm doin' it!!!!!" - - - Lexi's Special Toilet

The other night, Lexi decided "I go stinky on the toilet!" WHAT? Where did this come from?! I've been hinting at the big girl toilet to her, but apparently it was doing more than I thought! So I jumped on it, and we headed to Target to buy Lexi's Special Toilet and some Rapunzel undies (her pick!) and came home to try going on the potty. She thought it was so cool... "I'm doing it!" "I'm tryin'!" "On my potty!" "I DID IT!" "YAY SEXI!"

That's right folks, Lexi went #1, and kinda #2 on her big girl toilet. I cried - - - I'm not ready for my little girl to become such a big girl! She thought it was so awesome - she had to keep trying for 25 extra minutes! She was VERY upset when I said that it was time to go to bed (it was almost 9pm!!) She was cracking me up, having me make her Captain Hook figurine cheer for her. (she sets it on the actual toilet (lid down!!!) and said "Mom, he says 'GO SEXI GO'!" So Captain Hook and I cheered for Lexi on the potty. Oh, and did I mention that she decided to pose on the potty and said "Take a picture?" She was very proud of herself. :-)

Today she tried a few times, and every 2 seconds, she'd get up to see if anything was in there (there wasn't). What a goof!

She asked for a picture.

Counting how many times "I doin' it!"