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Our journey with Harper was full of adventure, difficult decisions, and exciting possibilities. Please use the search bar to type in a word of the experience you are searching for such as, CBD, Organ Donation, Eye Gaze, GTube, etc…. If you are unable to find information please feel free to contact us directly and we will help you in any way we can.
ASH WEDNESDAY FOR HARPER SUFFERING WITH CDKL5
As I stood by Harper in PICU at Medical City Dallas these last 12 days separated from my family yet again, I said to myself something good has to come from this, her life just cannot continue to be this hard! I recently discovered the practice of Ash Wednesday is actually observed by many different […]
FAT TUESDAY – MARDI GRAS FOR CDKL5
Today Harper was taken off Vapotherm and moved to 2 litters of oxygen. We are maintaining an oxygen level of 100%! However, Harper still remains at Medical City PICU for her Mardi Gras celebration. Mardi Gras is French for Fat Tuesday, referring to the last hurrah before the start of the Catholic’s season of Lent, […]
HAPPY VALENTINE’S DAY
February 14th! Valentine’s Day and Birthdays to two friends Heather Schueler and Addison Rainy! Happy Birthday to you both!! On a day when you see hearts, and candies, pink and red, chocolate covered strawberries and roses running ramped through the US you often think of romance and love! This “hallmark holiday,” as I like […]
UNEXPECTED
Well Harper had her first ambulance ride today. As you might have already read from my previous post, yesterday Harper was diagnosed with a double ear infection and mild pneumonia. We were sent home with breathing treatments every four hours and antibiotics. With today being Friday my husband, Dustin, said this morning why don’t you […]
NO CDKL5 CHILD LEFT BEHIND
Would you lie with me and just forget the world? OPPORTUNITY What initially seems, and sometimes feels, like a very depressing situation is actually an opportunity. Each day we are all faced with choices that lead to opportunities. What I have recently been reminded of is that not all opportunities have desirable outcomes. I have […]
Groundhog Day 2012 Controversy!
I have to say Harper the Dallas, Texas CDKL5 groundhog does not agree with Phil this year! Now, we are up against a national public figure on this one but he is only right 35%! 😉 According to Phil the Punxsutawney, PA groundhog: for 2012 “…many shadows do I see so six more weeks […]
CDKL5 Groundhog 2012
Happy Groundhog Day 2012! Groundhogs, also known as woodchucks, are commonly found in North America and have four large, chisel-like incisor teeth. These teeth grow about 1/16 an inch every week and because of this they must spend much of their time nibbling at wood to wear them down. If they don’t they may jeopardize […]
Typical One Year Old!
This is kid is giving me gray hair…good thing my hair is blonde…too bad for Dustin! As you know from our last post we are having issues with feeding. Turns out it’s from extreme muscle exhaustion and soreness. We took her Wednesday to feeding assessment where a swallow study was recommended. Took her Thursday to […]
TRYING TO SURVIVE
I have not forgoten about all our amazing supporters who are waiting on news regarding Harper’s progress and the outcome from our recent travels. Unfortunately our news is not good and we are busy doing everything we can to just keep Harper going each day. Due to her increased seizures and the severity of them […]
HESITATION
It’s everywhere at the moment! I hesitate to post specifics about my theory at the risk of ridicule from other CDKL5 familes following Harper. However, I will disclose my information anyway stating that Harper is in fact at the moment 1 of 1, not 1 of 300 as she is at this time the only […]