February is a month where we designate a day just to show our love for one another. Although it may not be known, it is also chd awareness month. For Olivia and our family, we are hoping it is not ohs number 3 month. Olivia had bloodwork drawn again today to test her hemoglobin, the amount of red blood cells in her body. Living always with low sats, we expect her to have a higher than normal number, but if it gets too high... we must look into fixing the underlying issue. The only way to do that, is to complete the three stages of surgery. So for now, February is hope for the best month. The constant praying and wishing for the best can seem endless on some days, but hope is all we have, because despair is not an option.
Friday, January 25, 2013
Today, Olivia and I were running errands. It is such a treat to get to spend special time just us on my day off. Well today, while riding around, Olivia was talking away. She just thinks it's cute to scream as loud as possible all the new words she has learned. So, while we complete our tasks, I enjoy the few minutes of untamed squeeling. Every so often, I would glance in the rearview window to see her smiling and waving at the cars passing by. Right before we pulled into our last stop, all I could hear was a sweet little voice singing or trying to at least with the radio. When I turned the car off.... she clapped for herself and said yea!
While shopping at Sam's, she greeted, high fived, said goodbye, waved, and clapped to other shoppers. It was the same at the grocery. She never let anyone pass without getting their attention. It was priceless.
I can only hope that as Olivia gets older she will keep that ability to see everyone with a sense of equality. That she will also continue to smile at the small things and most of all enjoy the time with family.
Monday, January 21, 2013
I'm sorry for all of our followers who haven't had any updates recently. Between appointments, school, and life in general, we don't really stop. I realized today that after I posted her pictures from yesterday, some may be alarmed at the sight of her new addition. As mentioned some time ago when we were in Philly, the doctors were worried about her hemoglobin. If it gets too high, around 19, she is at risk for a blood clot. When in Philly on December 4, it was 16.9. In early January, it was 17.7. The solution would be get her more oxygen, in theory. So, we have been doing the oxygen relentlessly when with her. We will know more towards the end of this month. If it is still continuing to climb, we may have to bite the bullet and schedule a flight to Philly. Naturally, this is not ideal.
The anxiety and fear of the unknown brings me back to when I was pregnant with her. So much lying in the hands of doctors, nurses, and my baby herself. Everyday, I am reminded of exactly how blessed I am to have another day with her. Her smile is a window into her wonderful soul.
Sunday, January 20, 2013
For a true New Orleanian, today marks as huge milestone for Olivia. It was her first Mardi Gras parade! This time last year, Brett sat in Philly with Livi while we celebrated at home, but this year will be different. Today was the parade called little rascals. For non—neworleanians.... it is a parade made up of kids. She loved every minute of it. She clapped, waved, said hey to passersby, and immediately knew what to do with the beads. There was a few times we had to get a snack in so the oxygen would stay on, but overall it was a great time. I just hope she gets to enjoy a lot more parades in the future with such excitement.