Life at 15.
Aspen turned 15 months last week and hit another milestone yesterday:
15 pounds on the dot.
We’ve been reaching for the 15lb mark since February, so this felt significant.
It also came while utilizing her feeding tube the least we ever have.
Well, since her birth... And those first few months where I just kept jamming my boob into her mouth in desperation, essentially trying to will her to eat.
Not as much progress is occurring in her length. And unfortunately, despite the small gain, both her curves are falling further from where we need them to be.
We’re just working so hard to continue in the direction of weaning from her g-tube. I still hate it, she still hates it, but we can't deny its life-giving value to her.
Aspen’s most recent testing confirmed a likely pathogenic genetic mutation on a gene that is associated with growth failure, skeletal ciliopathies and global developmental delays.
As I’m learning, I’m told that gene mutations can affect the gene in a number of ways. A mutation can make it completely not work at all- which can be similar to a deletion. However, if the gene on the other chromosome works fine, the range to which this type can affect a child can be minimal to severe. Other times it makes the gene fail to operate the right way; and yet other times it is a null mutation, in which the gene still works completely fine.
Complicated? Yes.
Do we know for certain how this mutation will affect Aspen? No.
After undergoing Fragile X testing, Aspen will receive whole exome sequencing to further understand what is causing her growth failure and whether a genetic syndrome or disorder is at play that ultimately will impact her overall development.
This continues to be a difficult place to be, a challenging place mentally, emotionally… as I both try to understand and search for understanding.
You ever look at your kiddo and think, yeah, something is “wrong”...?
I think it’s pretty easy to let your head drift to the dark whenever our babes don’t look, act or progress the way we expect. Of course, this also happens every time our kiddos fail to hit a milestone at the same time as their sibling, our neighbor’s kid, our sister’s boy…
I vividly recall a time when my oldest was young, I think around 2, and she was having a massive, I mean m.a.s.s.i.v.e tantrum in the backseat. I pulled into a parking lot just to get out of the car. Alone. To watch this monster thrash and rage in her carseat for another solid 30 minutes that acutely felt like 30 years.
I distinctly had the thought that something was definitely not right. That cujo here had to have some sort of developmental issue that was causing this epic meltdown. That her lack of responsiveness, her slow advancing language and her level of fury meant she was destined for behavioral and speech support at best, at worst, a life of crime. Today, her teenage mouth has no trouble verbally and she's avoided juvey to date.
But now I’m here with this mighty monk.
Where legitimately, something is wrong. However, what this means for her growth and development in the future is anybody’s guess. Including guesses by my fucked-up mind that feels the need to think plenty of fucked-up thoughts.
It’s easy for me to see every funky behavior as a possible signal of something concerning to come. It’s easy to succumb to worry when I focus on every area where she is currently behind. It’s easy to question whether I’m missing something, if there is more that can be done, if there is anything else I can offer in support.
It’s also easy for me to love her.
To love her something fierce.
I’m hoping that by the end of the year, we’ll know something. Something more.
This won’t change her trajectory, but it may change ours- at least in terms of how we channel our energy and expectations.
Which, honestly, would be helpful.
Mostly so my trajectory isn’t to a mental institution.
Fingers (still) tightly crossed.
-B xo