by thehowardhouse | Feb 22, 2012 | Harper's Updates
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...
by thehowardhouse | Feb 20, 2012 | Harper's Updates
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...
by thehowardhouse | Feb 14, 2012 | Harper's Updates
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...
by thehowardhouse | Feb 11, 2012 | Harper's Updates
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...
by thehowardhouse | Feb 10, 2012 | Harper's Updates
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...
by thehowardhouse | Feb 2, 2012 | Harper's Updates
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...
by thehowardhouse | Feb 2, 2012 | Harper's Updates
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...
by thehowardhouse | Jan 27, 2012 | Harper's Updates
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...
by thehowardhouse | Jan 26, 2012 | Harper's Updates
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...
by thehowardhouse | Jan 18, 2012 | Harper's Updates
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...
