Looking Back

It has been WAAAAAY to long since we last updated Olivia’s blog, no excuses, we just haven’t gotten to it. I’ve been reflecting on how far Olivia, Leslie and I have come in the past 9 months and wanted to share those experiences with you.

It seems like an eternity since we found out Leslie was pregnant, but it was only a year and a half ago. I can’t tell you how I felt when I found out that I was going to be a dad. I was so shocked, but so happy at the same time. Initially, I really wanted to have a boy, you know, to carry on the family name…but I love my little girl so much I now realize how ridiculous those types of wishes really are and how little they really matter.

It was so surreal when we found out that Olivia had stopped growing a month before her due date. Even then, we still were so happy that we’d have a little girl. Then the big day came and sure, she was small, but we didn’t care. We had a little girl! She was so perfect. I will never forget those firsts – the first time I saw her, the first time I held her, the first time I kissed her, I could name a hundred. Day two was nowhere near as much fun. Olivia had so many tests run on her that I thought she was part of a scientific experiment and we found out the doctors suspected she had trisomy 18 or 13 (I forget which one, but they both are life threatening.) Those next few days were honestly the worst days of my life. We had no idea what was impacting our little girl and if it was life threatening. Simply put, it sucked.

Thankfully, the genetic testing showed she didn’t have trisomy 13 or 18, but a different, extremely rare chromosomal deletion. That moment was truly a lesson in perspective; most parents would have been devastated by the news and we probably would have been given different circumstances, but to us it was like winning the lottery two days in a row, as our little girl was going to be OK!

Since then, life with Olivia has been so great. Sure the doctor’s appointments (often many per week) and therapy sessions (7 per week) today aren’t great, but this little girl is such a miracle. I’m sure every parent feels that way, I guess I am no exception. Every time someone tries to limit Olivia, it’s like she says “Screw you, I can do that” and does it. Sure, it might be a little slower than some kids, but who cares? I mean, she has a genetic deletion, she’s not expected to be “ahead”. Just writing that makes me mad, who determines these things? As long as she figures it out and is happy, that’s fine by me.

So here’s a quick update on Olivia’s medical stuff…

• Initially she was followed by 11 specialties at Texas Children’s – cardiology, neurology, pediatric surgery, developmental pediatrics, pulmonary, ENT, renal, genetics, gastroenterology, audiology and ophthalmology. For the most part, she still sees all of these doctors but with far less regularity. In some cases, the doctors don’t need to see her for a year.
• Olivia has physical, occupational, speech, auditory and vision therapy session 7 times total per week. It seems to really be helping.
• Olivia is still on supplemental oxygen, but we’re hopeful that she’ll be off soon.
• Olivia wears glass and hearing aids, most likely she’ll have both or something equivalent for her whole life.
• Olivia’s genetic deletion means she’ll develop at a slower rate that most little ones, but most doctors don’t know how far she’ll develop. It looks like she’s going good right now so we’ll just hope that keeps up and give her every chance we can.

We really appreciate everyone’s thoughts and prayers, they really help!

Chad