Kayla Baby Leg Campaign

While in the PICU, the staff were constantly commenting on Kayla's baby legs (her little leg warmers). We wanted to give back for the amazing care we received, so Jenn had this thought to donate some sets of baby legs to the PICU. After thinking about it a bit more, Jenn decided to call Andy's sister for help. Amy is an amazing marketing guru! She contact the Baby Leg company right away and the Kayla Baby Leg Campaign was born. See Amy's email below. We hope you all will help us in giving back to Strong Hospital! Please spread the word. Thanks, Amy, for all of your wonderful work on this!

________________________________________________________________

In early July, Kayla Pierson...just 5 months old, experienced a severe stroke to the left side of her brain. Her parents, Penfield, NY residents Andy and Jennifer Pierson immediately took Kayla to Strong Memorial Hospital/Galisano Children's Hospital, in Rochster, NY. After a week of intensive testing and treatment, Kayla is home with her family. Her recovery has been nothing short of miraculous. Kayla's parents were so touched by the care and level of professionalism with which the situation was treated, that they wanted to give back. While in the Pediatric ICU, Kayla was kept warm and cozy with her Baby Legs (www.babylegs.com); a leg warmer for babies. PICU staff were so interested in the product as it made for easier diaper changing and warmth in the babies, but could also serve as a friendly cover to otherwise frightening IV lines. Out of this desire to give back and interest in Baby Legs for future PICU residents, the Kayla Baby Legs campaign was born. Through the end of September, for every pair of baby legs you purchase for the Strong PICU, Baby Legs will match your donation with a 2nd pair. The hospital will be washing and reusing the Baby Legs, so your donation of around $12 per pair will touch so many little lives.

The process is as easy as 1 - 2 - 3!

#1 - Go to www.babylegs.com and choose the pair(s) of Baby Legs that you'd like to purchase.

#2 - At check out use coupon code: KaylaPICU and receive a 10% discount on your donation as well as receiving the donation match from BabyLegs.com

#3 - Enter the shipping information as follows:

Kayla Pierson

150 Highledge Dr

ADD TO PICU DONATION FOR KAYLA **this must all be in caps**

Penfield, NY 14526

As previously noted, this campaign will run through the end of September, at which time all of the Baby Legs will be shipped to Kayla's parents. We will then take the donation to the PICU and make the donation in Kayla's name and strength.

Thank you all for your consideration in making a donation!

Best,

Amy Karlgut

Kayla's Aunt

Kayla Ann looking so cute!

Home Sweet Home

a little jam session...
My brother looking super cute!
Look at me starting to use my 2 hands again! Do you notice my wrist rattle? Mommy and Daddy are making me wear it so I can hear and see when my hand is moving. They put them on my feet too, to help encourage me to grab my toes with both hands again.



Here's what we've been up to the last few days! Benji and Kayla have loved loved loved seeing eachother. Jenn's mom caught it on camera, but we didn't. Kayla and Benji kept reaching for eachother. Benji insisted on holding her and Kayla couldn't take her eyes of Benji. It was amazing. Kayla has started belly laughing again and is fully sitting up already. We are so proud of her. You can see the look of concentration on her face and confusion in her eyes when she's missing something. She's always had wise eyes, and now they are in a constant state of confusion. She's afraid of loud noises. She's also gone back to nursing every 2 hours and waking every 2 hours. Not sure if she forgot how to sleep too? Jenn's not really a fan of this regression. :) All in good time!

Home

Benji and Kayla are in bed. Jenn and I are jus... zzzzzzzzz

Yippee!

Getting discharged...paperwork is getting gathered! We hope to be home in the next couple of hours. We appreciate all the emails, voicemails, texts, facebook posts with encouraging words! We know we haven't responded to the vast majority, but we really were touched. We hope to re-start our lives and focus on improving Kayla from here!

Can't wait to see Benji and have our kids reunited.

Still waiting--but hey, we are that much closer!

Hopefully this is our last morning here! We just met with the Neurologist fellow and 2 residents. From their end, everything looks great...but we are waiting on the head attending for neurology radiology to look at her MRI. Right now, we are looking at a mid-afternoon discharge. They keep saying she looks absolutely amazing...we are supposed to resume normality, treat her like normal, and just hit the therapies running hard. Hopefully in the long run, all our pre-work will make a difference. She's loved by all here, but they don't want to see her back. We'll post when we are leaving. Stay tuned. We also wanted to "give back" to the staff here---so with help from Andy's sister, Amy, we have a plan! We'll post about it once all the details are set. We are SO excited about it, though.

Cuddling after the MRI

See, I'm getting better!

Waiting for the MRI

With Uncle Jeff...

EGG ---get this thing off of me!

the sparkle is coming back to my eyes!

Sleeping it off and all corded up!

see! I'm smiling again!

Back and looking good

She's happy! She made all the nurses fall in love with her. They said they all had to hold her before they brought her back up. We don't know the results yet (tomorrow), but she's now had a bath, scrubbed free of glue, and trying to go to sleep.

heading up...

She's coming back to the room in 20 minutes!

Still Waiting

We've been waiting all day for Kayla's tests. Last night the committee met and it was decided she would have a MRI instead of the CT/hemoglobin test.

Whew! The nurse just came in, and they are coming up now to get her. She hasn't eaten since 3:30am (it's now 3:00pm). She's had sugar fluids, but that's it. She's been calm, but the poor thing is exhausted--and antsy! We've been able to walk the floor with her for the last 45 minutes and she fell asleep.

We are still praying! Thank you thank you thank you for your prayers too! It's working!

Fortune Cookie

Kim brought us Chinese Food the first day we were in the hospital. Mine was "Don't take unnecessary risks." Jenn didn't open hers until today:

Angels are among us; when you find them, cherish their presence every day.

Neurology and Pediatrician update

They both think she's doing amazing! Potential discharge now Wed. Will know tonight about what test will be tomorrow. She may be going down to one seizure medicine...at least she will in the next 2 days and then will be weaned off over 1-2 weeks. We'll have many more follow-ups with our Ped and Neurology here, plus those interventions. The neurologist also suggested she didn't think there was weakness in her right leg like the OT thought...so just a difference in opinion.

In regards to funds, our pediatrician thought the fundraiser was an amazing idea. He said we won't know if she'll need some non-insurance supported therapies in the future. More will tell over the next 6 months to 2 years. So, we appreciate everyone's support and thoughts. Some therapies are more "experimental" (although totally safe since it's more psychological, not medicinal). Anyway, we'll have to be on top of our game related to these! He's a great resource too to help us navigate those pathways. Dr. Ingerowski (our ped) came to see us again today! Have I mentioned how extraordinary he is?

OT Visit

An OT (occupational therapist) met with us today. She looked at Kayla's movement specifically. There is some weakness in her right leg that we didn't notice. Specifically, she leads with her left and curls her toes on her right. However, this may be just who she is. I'm trying to remember, but Benji used to overlap his feet a bit when he was "walking" and curled his toes ---didn't hold him back from walking at 10 months and running at 10.5 so I'm being optimistic about that.

To work on her right weaknesses, we need to hold her more around her hips, work her thumb and fingers, and constrain her left arm sometimes while playing. Rattles on feet and hands are good too---so I have to remember to dig those out of her play basket at home. They said the more she grabs her toes the more strength she'll have in her core. She'll be more thoroughly evaluated through Early Intervention, but the possibility of her having outpatient care until that is in place is available if we want it. You know us...always want the best...so we said absolutely we aren't going to wait a month to start therapy. The OT said she really is doing well and time will show what she needs. We'll see how and when we can get started once we know a real discharge date. I guess everything hinges on the meeting tonight.

Benji seemed much happier this morning when I (jenn) went home to see him. We spent a lot of time yesterday with him (jenn in the am, andy for mid-morning through nap, jenn for betime). Today he told me to leave. Okay.... guess he's happy with grandma, aunt amy, auden, patrick, and everyone else who is entertaining him! He also is loving his new book and puzzle (thanks Deborah!). In Benji's words "it's so awesome!"

A big shout out to all my mommy friends who dropped hand pumps off. I have 4 different ones to try! Wow, thanks guys. The nursing is going better...I have more milk, so again thanks to everyone who sent suggestions about the herbs, teas, amount of pumping, etc. As andy mentioned, many of her tubes came off today, so that was a pleasant surprise walking in and seeing that when I returned from being with Benji.

We are grateful.

Moving

Kayla's vitals are rock solid. They're going to move her to a normal room when it becomes available. Probably nothing new to report until tonight.

Kayla did manage to tear out her big IV (she's fine), so sadly she'll probably need another put in at some point.

Something like normal

Kayla had a hard time falling asleep last night. I think it was a combination of her teeth bothering her and her deciding it was time to relearn how to take the pacifier out and put it back herself, but with her left hand. She was partially successful at learning, but completely successful at keeping herself agitated. After a dose of Tylenol, a lot of soothing and chilled pacifier swapping, she slept from around her normal time to 1 am. Then she got us up, Jenn nursed her and she went right back to bed!

Also, they said her electrolytes have been perfect, so they detached all her tubes. She still has both IV lines in, but they're not connected to anything. She still has some monitoring cables and her EEG leads, but fewer is better. I think this may be because the nurses didn't like untangling her every 3 hours. In other news, they're much better at Tavern Puzzles.

Friends

Our amazing friends...we are so blessed to have so many in our lives in rochester and across the country. You have completely become our family. Thank you. Our families near and far thank you too.

One of those friends is organizing this fundraiser. We don't forsee the future, so we aren't sure what medical costs we'll have, but right now we'd love the money to go towards future infants in the PICU...by maybe donating baby legs to keep those legs and feet warm! Thanks Meg for your wonderful generosity and thoughts!

http://www.artfire.com/modules.php?name=Shop&op=listing&product_id=1611541

Text Update

So it looks like we'll be here for a while longer. The neurologist is going to convene a meeting with the Stoke Committee to discuss our situation. They're not sure what the next step should be and they don't want to do unnecessary testing. Current thought is that we may be home by Thursday. They really need to get the seizure medication fixed before we go.

Thank you, all, for your love and support; we couldn't be getting through it without you.

Comic Relief

Comic Relief

Photos

Eyes Crossing the Median

Keeping her untangled is a challenge

A visit from Babi

Silly times from the day before

Nursing like a champ!

Beautiful Morning

It's light out, so it must be morning. Kayla, Jenn and I slept in chunks through the night. Jenn is planning on heading home for some quality time with Benjamin this morning, but needed to finish her sleep cycle. I'm going to go home later so that I can put him down for a nap and give him a good snuggle. He really needs us, too.

Kayla had some more labs drawn this morning, but the nighttime nurse is a champ and got it on the first try.

Kayla was looking across her midline for extended periods this morning, responded to our voices one time (which she hasn't been doing), and gave me a big smile that I'd be hard pressed not to call symmetrical.

Crossing the midline

We've been focusing on staying on Kayla's right side, forcing her to turn to us if she wanted to look at us. She briefly glanced at Babi an hour ago, but just as she was falling asleep she turned her head and eyes and looked at us on her right! For a long time! Huzzah!

When I was giving her a bottle of Jenn's milk, she was reaching over with her right hand to hold it. While she couldn't get her fingers open, she did manage to keep her hand on the bottle for a while at a time.

Go Kayla!

A sleepy, poopy day

Today has been pretty inspiring. Kayla has been sleeping wonderfully on her stomach after rolling into that position by herself. When she wakes up she's nursing like a champ. She's then getting all playful for 15 minutes or so before falling back asleep. We're fine with all the sleep because she's very alert when awake and she needs to heal.

Today she was very smiley when waking up. By late morning the smile was making an appearance on her right side! Just before she fell asleep her smiles just looked a little goofy, as opposed to lopsided.

After her first time sleeping on her stomach she had a HUGE poop. That was shortly after her suppository, so that was fun.

We're really appreciating all the love and support that you've been sending our way.

Benji has been playing with Patrick all day. (Thank you, Brooke!) They fell asleep with their arms around one another. He's aware of the situation but isn't phased as he's getting so much quality time.

They're going to leave the EEG leads on her head for the time being because she was having non-clinical seizures (only in the brain; no body movement) and they want to get the seizure medication dialed in.

They still don't know why this is happening, but hope that the blood work that will come in over the coming week will shed some light. We may never know.

Further good news

The neurologist said that the brain swelling is minor and that her progress is fantastic. They're going to take off the EEG leads today that have been covering her head. Her prognostication is that we'll be sent home on Monday or Tuesday if everything looks good. She'll have another MRI and occupational therapy before we go.

We put her in the sitting position and she was much more stable than before. Then she decided that she wanted to stand; she was pretty solid.

There is increased muscle tone (bad) in her right arm. Basically that's something we'll have to actively combat.

Anyhow, we'll feeling much better after the rest and shower. Kayla has been sleeping and nursing and has been pretty happy in between. We're going to rotate home today after the doctors come by. Because this is a teaching hospital, a group of about 10 people come by. One presents the case and they all listen / give feedback and suggestions.

Time to move her back to the bed!

48 hours

We forgot to mention, the doctors said yesterday the next 48-72 hours are the most important and scariest. She could have set backs and this is when brain swelling and another stroke is most likely. So we'll pray.

Night 2

Our second night at the hospital went much better. Kayla slept 1 4 hour chunk, and 1 3 hour chunk. She basically woke up to nurse both sides each time. They were able to draw more blood more efficiently this time--still 3 nurses to hold her down, but they found a vein within the first 10 minutes and successfully drew the blood. She's wetting diapers more consistently now too.

She woke up happy and playing. She not laughing anymore which is really sad since she had such big belly laughs and giggles. She's also not tracking the same. She can see toys on her left side, but once they reach the mid-line to her right or if they are too far down her body, it's like she forgets they are there. It's really hard to watch.

We both showered! yippee! We both also slept...which is really good for Jenn since it had been days. She's sleeping now so we'll see how the day unfolds.

Background

I know so many people are wondering what happened, so here is a brief synopsis. I've probably missed some things because I'm overly exhausted, but for those of you who need more background here it is:

Now a note about our Kayla...

Wed mid-day she received her DTap vaccination. She was playing well, interacting, being amazing just as she always is. The doctor was amazed at how well she was sitting up and engaging with Benji. Later that afternoon, after a 2.5 hour nap, she was her normal self, rolling across the floor, pushing herself backwards on her tummy, playing with her toys. She went to bed on time and happily. I continued my night with craft night. Just after people left our house, around 1:00am, she woke up absolutely wailing. She's been breaking through her 2nd tooth, so we thought she was just uncomfortable. We took her temp 100.3 and gave her a bit of tylenol. She wouldn't settle down. She was screaming and screaming and screaming. I held and rocked her for awhile and then andy took over so that I could sleep for about an hour. She fell asleep on his chest for about 30 minutes. I then took her downstairs and put her in the carrier. She whined and cried until finally dozing at 6:30ish. After about 30 minutes she woke up screaming again. I took her out to change her diaper, and noticed immediately something wasn't right. She only looked to the left, and wouldn't respond to our calling of her name, wouldn't turn her head, and wouldn't move her body correctly. I tried to nurse her and she sort of nursed, but kept getting frustrated. At that point, I told andy we needed to call the doctor. My gut was screaming that she wasn't our kayla. It was the scariest thing. Many of you who know her know she's engaging, and wise, and has "old eyes." This little girl had glazed eyes that wouldn't focus, almost like she wasn't there. We got an appt and I settled her down on my chest in teh rocking chair and she slept for maybe another 30 minutes. Finally I called Kim and Brooke for them to pray and Kim pushed me to do what I knew I should have done in the beginning (thanks kim!). We dropped Benji off at Kim's house, and went to the office demanding to see a doctor immediately. Our office was truly exceptional. The nurse saw us right away and then the doctor did too. At the office, that's when we noticed she wouldn't lift her right hand at all. She was trying to play with a toy, and she would cry because she was frustrated she couldn't lift her arm. She continued to look left and wouldn't track a light even with the lights off in the room. I kept saying, this isn't her, this isn't her. They sent us to the emergency room, where once again the staff was amazing. Our poor chubby little girl had to have 3 nurses try for 45 minutes to put in her iv. While there, she started having seizures in her right arm up into her mouth and face. A peds neurologist came in and she was sent on for an MRI. It was the waiting that killed us. Then the diagnosis...

She had suffered a massive stroke sometime through the night in the left side of her brain. This hurts learning processing and motor skills. They didn't know to what extent she would recover. Some children can, some can't. Again, a waiting game. They did say because she's so little that 1. they have never seen this before, and 2. because her brain is still developing, this could work to her advantage. It would help with brain swelling since her skull is still open and with relearning and remapping the learning she has to do. So- we are scared, hopeful, and again, playing this long, long waiting game. She'll be getting speech, pt, and ot services immediately to help with this.

Today: She has done remarkably well. She is now fully using her entire right side of her body. When the doctors and PT examined her, they didn't feel much, if any difference in her muscle tone. She's waving her arms around, rolling over, pushing herself up. She keeps ripping her tubing out to drive the nurses crazy and again had a terrible time getting new iv lines into her chubby arms and legs. She has amazed the doctors. They keep saying it's absolutely amazing what she is doing in such a short period of time. She was able to nurse for the first time this afternoon 3x (again, they were worried about her latch because of the right side of her mouth). We aren't sure how much milk she's getting, but she is nursing. She's very groggy because of the seizure medication, but has grabbed for us several times. We don't know her cognitive state. She does still call for me "nananan", but it sounds different. Her cries are different too, but again, we aren't sure if this is exhaustion, drugs, or just how she is now. Our pediatrician said she has surpassed his expectations for her thus far, so we need to remain praying and hopeful for continual growth.

She had an eeg done today and is still hooked up with wires all over her head to track the seizures in her brain. She also had an echo of her heart done to see if the clot could have started from there. Her heart was absolutely fine. They've ordered massive blood work. They still don't know what caused the stroke. Both the hospital team and the peds office filed a notice to the cdc about the vaccination though. In my gut, I really truly feel that this is the cause. Even online there are several cases of strokes, and seizures from the vac. My doctor told us today that he is writing both our children a medical exemption from further vaccinations, and for kayla specifically he would not give her another shot, period. He's amazing. Again, they can't say that there is a link, but it's troubling.

How are we? Holding up. I can't sleep. in the past 3 days, I've slept maybe 2-3 hours. Benji is doing remarkably well. Both Andy's mom, my parents, and his sister and her family are here with us. We have the support of all of you, which again, I am so grateful. I know many of you have sent me messages and I probably won't have time to respond, but I really thank you from the bottom of my heart. I have my cell here 419-5579 and we can always be reached in the PICU (room 9) at strong. I don't know what we need. I'm at loss. Right now a shower. :)

Thanks everyone.
Jenn, Andy, Benji, and Kayla

First Nursing

Kayla nursed for the first time! She took the right side like a champ, but had trouble with the left. We don't know if she was full / tired / whatever, but we'll have to keep an eye on that.

The attendant on the floor (the head honcho) said that Kayla was progressing amazingly. She was able to demonstrate a strong grip on the right hand when activating the "pulling herself up" reflex. Normally her grip is weak, but this was white-fingernail style gripping.

On the down side, she had another small seizure (the first in a while), but that may be because the meds are wearing off.

I'm really hopeful at this point. Thank you for all your prayers; they're working!!

Happiness is Bacon Pancakes

The bacon pancakes make the others happy. They all made my tummy happy!

Happy 4th- Day 2

Mommy and me getting ready for the neighborhood parade!
Natalie and me going up the street to meet the parade goers.
All ready!

Off we go!
Kayla met us after her nap! Sadly, mommy made me 2 4th of july outfits, but kayla only 1! :)

Falling Asleep

This is how I fell asleep after the parade. Am I stubborn or what?

4th of July-Day 1

Happy 4th of July! We celebrated the first day of our 4th of July weekend at the Penfield Parade and then later at our neighbor's house. I loved the candy that the people in the parade kept throwing at me. Kayla enjoyed waving her flag. How cute do we look? Mommy made both of our outfits (mommy's friend made kayla's hair bow).

I'm 5 months old. On my 5 month birthday I popped through my first tooth! (the bottom right). Mommy is relieved, because I've been pretty fussy at night the past week.