Power for Paige
Fundraiser to help Paige get her Trexo. Learn more about Paige below.
Power for Paige Fundraiser
Bowl-A-Thon held at Chacko's. Information on participating, donating & sponsorship. More Info TBD
Paige was born with high muscle tone, and since 1 month old she has been in physical therapy multiple times a week. Our poor baby girl was pretty uncomfortable.. which did not always result in the best of moods in these first few months (she cried.... alot). It affected her feeding (she was burning more calories than she was taking in). So, due to a slowdown in weight gain at almost 2 months old, we were admitted to CHOP (The Children's Hospital of Philadelphia) for a week. Paige underwent multiple blood tests, EEG and an MRI (to see if they could find a connection between the weight concern and the muscle tone). All test results came back normal. So we left with a steady feeding plan (by upping her calories big time!) and already had her packing on the pounds.
At almost 5 months old Paige started having seizures. Once they first started they were very quick, just a few seconds... something that could have easily gone unnoticed. Within a day they progressed to more, happening more often, lasting 2 minutes, then increasing to 4 minutes. After being admitted to CHOP once again, Paige was hooked up for an overnight EEG, during this time she experienced a 9 minute seizure. After another MRI, a spinal tap and multiple blood tests (including a test for the 100 most common genetic disorders)... we kept receiving normal results.
After another week admission we were sent home with a variety of medications. Some that held her over temporarily but she did break through others (resulting in seizure activity). With some trial and error Paige was on about 7 different meds administered 3 times a day. At almost 7 months old Paige had her first seizure lasting 20 minutes. They lasted like this and continued roughly every 4 days for about a month. After many ambulance trips to our ER and another week admission to CHOP meds were up'd/changed accordingly. At this time we entered into WES (whole exome sequencing, a rare genetic testing).
At 10 months old we finally received a diagnosis. Paige has a rare genetic brain disorder. This variation in her Gria3 gene is what is causing her high muscle tone, seizures and global developmental delay.
At 1 year old we introduced Paige to the Ketogenic Diet at CHOP. If you are unfamiliar with Keto, it is a high-fat, low-carbohydrate diet. Doctors usually recommend the ketogenic diet for children whose seizures have not responded to several different seizure medications. This is the category Paige has fallen under.
After having our first introductory class and being shown examples of what she would eat, meal prep, math and supplies, our heads felt like they were going to explode. Cody and I left looking at each other wondering if we would be able to succeed.
In June 2019, Paige was admitted to CHOP for 1 week to be monitored to start the Keto Diet.
Cody and I attend classes daily in the hospital (while GramGram stayed with Paige) to learn how to correctly use our equipment, properly work out the math to determine how much of what Paige can eat, how to prepare, weigh and cook her meals. We learned everything from what drinks she can have, vitamins she can be on down to the toothpaste she is allowed to use. Medical Keto is no joke.
Paige was a rockstar her first day! She ate everything we presented her with, without hesitation. Then day 2 hit. Paige experienced what they call the "keto flu". She was so beyond tired we had so much trouble waking her to feed her. Once we could, she was vomiting anything and everything we gave her (including her meds). At this time Cody and I were hit with questions just tormenting us,
"Was this a mistake?"
"We admitted her to try something to make her sick?"
"What if the seizures get worse?"
The Keto Team reassured us multiple times that this beyond common reaction bodies make to such a strong diet change (one of the reasons for the admission). Paige underwent multiple blood tests and an EKG to make sure all was good, and it was.
Day 3 on was a complete turn around for our peanut. Paige popped back to her normal, beautiful self and even started saying her first word, "Dada". She immediately seemed so cognitively alert, we were so excited! Paige went on to go through the next 6 months SEIZURE FREE.
Unfortunately, that was the end of our seizure freedom. With more med changes, med fails, diet ratio increases, ER visits, Life Flight and more hospital stays, we found ourselves at another dead end. Paige has been and is currently suffering from at least 8 seizures a month. At this time different options are being presented to us to sit down and discuss. We will always do what we think is best for her and will hopefully get her more seizure free days.
During all of this, we have the other parts of Paige that we also need to focus on. Paige is unable to sit, stand, crawl or walk without assistance. This requires new additions to our home....medical equipment! A bath seat,
pediatric wheelchair, gait trainer, and supportive floor base seats just so she can sit unassisted, learn and play (just to name a few). Still learning to feed herself, drink from her sippy and communicate, Paige doesn't talk or say many words. But she "growls", yells and laughs louder than anyone! With multiple therapies weekly (PT, OT, Speech, Feeding, VOJTA and now hopefully the Trexo!), she attends pre-school (with her nurse) 3x a week. During the warmer weathered months she is also involved in Hippotherapy. If the option is there for us we will do what we can do help Paige develop.
Depending on when seizures happen, it interferes with her therapy treatments. Appointments are hard to get to, you find yourself feeling horrible for canceling last minute because she had a seizure on the way or in the waiting room. Each day is different and unpredictable. We still fight to work through those tough days and are always working with her at home. That being said, with adding the Trexo to our home, we are hopeful that this will help Paige not only become stronger but let her experience life the way a typical 3 year old would.
Paige is moving forward at her own pace and we are just along for the ride. We are truly blessed to have such a smart, strong, hard working little girl. She has the most contagious giggle, sweetest smile and the sassiest side eye. Paige has been a warrior at battling the challenges she has had in her first few years of life, and we will be right by her side helping in any way we can.
-Cody & Karla Harman