First steps!! …at 6 years old

By April 1, 2018 February 11th, 2020 Article

“My baby is walking!!!”  Do you remember saying that or hearing a family member or close friend exclaim those 4 words??  That baby that they were cheering about was maybe 9 months.  Or perhaps 12 or 15 months.  Well, I got to say those words when my daughter was 72 months.  For the majority, including myself, that don’t use months for age, 72 months is 6 years old…Will She Ever Walk?

If I had a dollar for each time I’ve been asked that question, I’d probably be $500 richer.  Maybe not 500, but that is the number one question that I’m always asked.  The second runner up is “Will she talk?”.  But to stay on topic, let’s focus on the walking.  My answer for the inquisitors has always been, “I’m not sure.  That’s not my decision.  That’s between Genell and God.”

If this is your first time reading my blog, in short, my daughter Genell was born with a very rare chromosome disorder.  So rare that there is not even a statistic stating “__ out of _____” are born with this disorder (e.g. 1 out of 5,000 or 1 out of 691: which happens to be the statistics for Down Syndrome).  Chromosome abnormalities are very unique.  There are a few cases of Chromosome 7 deletions, however, when you look deeper at the exact area on the gene, that is when the rarity comes into play.  Genell is the only one (on record) that has this particular defect, so my quick answer to those questions are in no way me trying to avoid the conversation.  There is not one case that we can compare Genell to, so most of my answers are always going to be “I’m not sure”.

What Do The Doctors Say?

Genell has several doctors.  She’s up to a total of 9 right now.  Although each doctor is an expert in their particular area, some have been “experts” on sharing their opinions on Genell’s mobility.  While some have been optimistic, others have enlightened us with their pessimism.  Despite the negative conversations that we’ve had, I think …actually I know that Genell is now proving them wrong.  Will I go out of my way to send them a video or show up in their office without an appointment to prove my point?  Ehh….probably not.  However, trust and believe, the next time that we are scheduled with “Dr. Pessimist”, I will make sure Genell walks into that exam and say something along the lines of “Hi Doctor!  Great to see you!  Remember the convo we had about Genell’s mobility?  Well….lookie here now.  Looks like the glass is half full now, huh?”  I’m sure they’ll read between the lines 🙂

Next Steps….literally

Genell is getting stronger by the day.  Her gait (the way she walks) is still a work in progress, but she has an awesome physical therapist along with family and friends that encourage her to use her legs.  We haven’t had Genell’s botox follow-up yet, but I’m pretty confident that her improvement with walking has a lot to do with the botox injections.  You can read about those injections here: BLOG 5

She’s Walking!

Check out my latest YouTube video to see it for yourself ♥