Part is because I planned to write a lot on vacation and ended up without any wifi! It was like vacationing in 1989 but it was GREAT. I know it's hard to believe but I actually relaxed on vacation with a 1 and 3 year old! Go figure.
Part is because I just don't know what to say. Other than my alma mater experiencing it's darkest days my life took a turn back to the on and off darkness of living with an alcoholic all while being rocked by some long awaited answers to my daughter's medical issues.
My life has been like a bit of a roller coaster and I guess I was waiting for the ride to slow down so I could focus a bit and pinpoint which part of my chatter was the loudest and in need of some self therapy on here. I kept waiting and waiting for... I'm not sure, the tide to turn, some positive news to share maybe. Today I realized, that's just life, the ups and downs and all around, so I better get back to writing before time gets away from me and I'm back at square one again.
So, here I am.
I thought today about what was most pressing in my chatter. I thought about why I'm so "obsessed" with my fight for my school and the truth and justice. Other than the fact that's simply who I am when I know in my core that it's the right thing to do, I wondered if there was more to it. I wondered, like I often do when I get so immensely wrapped up in something, if I was trying to block anything out. When I nearly started crying after my daughter started her odd hand thing again (I'll get to that) I realized that maybe I'm trying to suppress all the fear, worry and anxiety I'm feeling regarding her. Because there is A LOT of those emotions right now and I know if I allow them to take over they will incapacitate me. So, I preoccupy my thoughts instead.
For those that don't know, we have been seeing specialist after specialist trying to get to the route of a couple issues with our little girl. It started with her reflux "returning" after about 8 months weaned from medication. She was diagnosed with at 6 weeks old and successfully weaned shortly after Caleb was born. It never fully went away but it wasn't too bad and didn't seem to bother her. By early this year it was so bad I knew it needed addressed again though, and so it began... again.
We went back to the pediatric GI, a new one since we had moved. We tried an allergist, which was pointless. No one bothered to read old records, I had to fight for tests not to be repeated, reiterate everything like they had no idea why we were there and go through everything we had already tried. We went through a whole new round of tests including an upper GI which was so traumatic I'll forever have the image of my baby strapped down yelling, "Mommy, help me, help me, mommy, I'm scared, mommy, all done, help me, I'm scared" over and over for 30 minutes ingrained in my memory. I felt completely helpless to comfort my little girl for the first time. Sure, I could have stopped the test but the alternative was anesthesia and a scope and putting her under scared the hell out of me, anything can happen.
The test concluded she has constipation and reflux. No kidding? Thanks. Though I should be relieved it wasn't anything crazy like organs out of place, I couldn't help but feel annoyed.
Then we got results a couple weeks later that said her pancreas wasn't producing enough digestive enzyme to break down and absorb fat. I still don't know exactly what that means but I had already started her on a homeopathic digestive enzyme which the doctor said should suffice so... we'll wait and see.
Then it was on to the pediatric endocrinologist. A what? What the hell do they do? I honestly am still not exactly sure but his job was to figure out why she isn't growing/make sure it's not simply genetics, which I have thought it was all along. I mean we aren't exactly big people so what else would it be?! Another round of tests... on her birthday because I was not taking her back in that radiology room where I knew she would flip out upon seeing that x-ray machine. Daddy took off for his little girl's big 3rd birthday, so, the hospital is where the day began.
One test was a blood test for some genetic thing the doctor said was less common but more serious and he just wanted to rule it out. I didn't think twice about it but rather was freaking out and consumed with worry that it would come back she had growth hormone deficiency. I have no intention of giving her growth hormones and I didn't want to feel like a bad parent for refusing hormone treatments. I buy organic milk to avoid giving her unnecessary hormones and someone was going to tell me to willingly put them in her body?! I called her pediatrician...again....freaking over the new information. She calmed me down... again.... I love her doctor.
When the endocrinologist doctor himself called to go over the results, and then called back first thing the next day after I missed his call, I thought, uh oh.
He explained to me that she has that genetic thing I didn't think twice about BUT it does not appear that she is growth hormone deficient. Of course not, of course it's the worse of them. She has what's called a balanced chromosome translocation. Yes, it's a mouthful though not all that difficult to understand. A part of two chromosomes essentially switched places. Because they simply switched it means no genetic material was lost. This is good. But they can't say if whatever those genes are responsible for will react properly being in the wrong place. So, we wait. For nearly a decade we simply have to WAIT.
What are we waiting for? Why so long? We are waiting to find out if my little girl can have kids. Yes, kids of her own. Or, if she will have early ovary failure. We are waiting to see how this chromosome thing may or may not effect her reaching puberty, which can have all sorts of issues associated with that, including fertility issues.
My heart sank. I have told myself ANYTHING can happen when it comes to medical technology by the time she wants kids...I've told myself this may be a moot point, maybe she won't even want kids... and then my heart breaks all over at the idea of her desperately wanting biological children and finding out before she can even drive a car that she will never be able to. BUT, it's not a guarantee, just a higher probability than the average Joe, or Jane in this instance. How high? They aren't sure. But he has two other girls he sees with the same region of their X chromosome impacted in some way (not the exact same way as Rylie's) and one hasn't reached puberty and the 14 year old's ovaries are starting to fail.
A LOT to take in for a momma, huh? Well, it doesn't end there. Nope, the hits kept coming.
Her bone age (the hand x-ray) came back at 2 years old. She turned 3 last month. Why is my baby so tiny if she's not growth hormone deficient? We don't know exactly. Maybe it's because of the chromosome thing, maybe not. What we do know is this... if she continues on the growth curve she's on she will only hit 4'6"-4'8". All the women on both sides may be small, but this isn't quite normal. Something is amiss. We also know she is an extremely picky eater which may be because of her reflux, constipation and digestion issues, or maybe it's just because she's three. After counting her calories for a few days we also know that she is not getting nearly enough to grow properly so her reason for not growing could be as simple as this, she needs more food. I pray it's this.
Now to figure out how to get her to eat more without an appetite stimulant. To me, "stimulant" just sounds like a drug I don't want to put in her little body if I can avoid it in any way.
NOW, why was I nearly crying yesterday you might recall from earlier? The odd hand thing? Yes, well, Rylie started doing this odd hand thing some time ago. I honestly can't recall when but in my attempt to try to figure it out I think it was after her binky was a thing of the past. It's not all the time either, it comes and goes. As someone who used to work with children on the autism spectrum I know what she is doing is stimming. But it looks more like she's playing with an imaginary piece of string. She may do it for hours in the middle of the night. She imaginary plays while doing it. At 3am some nights I'll hear.... "look, mommy, a picture!" What the heck do you say to that?!
I could deal with her doing this all night if it was her way of decompressing, rehashing her day in her own strange way, whatever. But she started doing it more over the past week and now it's not just when she wakes at night. She did it while sitting on the potty before bed the other day and flipped out that she wasn't done on the potty but then continued to do her hand stim... with her eyes tightly closed. She did it again yesterday when we got home from the library. I never saw her do it in the middle of the day. I took a quick video, asked her what she was doing even though she rarely answers and when she does it usually includes her imaginary play as a reason... "I'm playing with a bug" or something like that. Then she was done with it and I haven't seen it again, 24 hours later. But I was freaking out inside and went to the kitchen to text my husband about what we should do.
He said, let's wait and see. Wait a week. Maybe she's just still upset about vacation being over. May sound funny but she was really upset that we left the beach (and amusement park) and came home. Me too! But it was also when it increased. It's also when she started grinding her teeth, again... and a lot. Another stim.
Maybe he's right, maybe she is just upset. Or, maybe she senses my anxiety over all these unanswered questions and this is how she's dealing with it. Maybe it's something else. My behavior therapist side started doing some research. There's a lot of scary stuff about stimming though it is very reasonable to conclude it's perfectly normal, considering she has no other developmental things (other than her growth and digestive stuff I mean) Well, and her sleep issues which no one can seem to explain, other than maybe it's her reflux, which is certainly a reasonable conclusion. She met all her milestones on time, she's social and plays well, she has school ready skills (A,B, C's, 1,2,3's...), there's no gross or fine motor issues, etc. and though I felt she was slower to talk she was always within normal limits and it has really picked up lately. I keep thinking, maybe I'm missing something because it's impossible to totally remove the mom hat in my "evaluation". What if I'm missing something?
If the stimming stuff didn't scare me enough, doing searches relating to that AND the chromosome thing brought about a whole new set of fears that I damn near stopped breathing. Then the anxiety, worry wart mommy in me took over and thought, what if there's more, like something really, really bad more?
This time, the word wait is helpful, therapeutic even.
There are so many levels to her various issues I need to remind myself to take them one at a time. We haven't even met with the genetics doctor yet, heck, they haven't even called me to set up the appointment! Which annoys me. But I'm not exactly the most patient person when it comes to getting answers about my kids health. Who am I kidding, I'm not exactly patient about anything!
Lately though, I mostly fear what if the doctors are missing something? What if they aren't steering us in the right direction? What if, what if, what if.... It's hard to trust any of them when I question the competence of nearly everyone lately. I could get second opinions but the idea of putting her through any more tests when this all seems pretty clear makes me think I'm just getting carried away. I'm just being an overly worried mom and I just need to wait and see what comes of the things we are trying.
Who knows, maybe she'll get over her picky eating and by the end of the year we'll see her inching her way onto the growth chart again. I'm hoping the peer pressure at preschool will get her to try new foods at snack time and open a door for us at home. Maybe the odd hand stims and teeth grinding are simply anxiety or her trying to keep herself awake to avoid bedtime and it'll pass as she matures. Research I've read states this is certainly possible, especially if the child is otherwise typical. Maybe the digestive enzyme I have her on is working and that follow up test will come back normal and we'll have one problem solved just like that. Maybe. Just wait. Be patient. Ha.
I have to have faith that I have been on top of all of this since she was 6 weeks old. I have followed up and taken her to every specialist recommended to cover all our bases and ensure it's nothing more. I've tried everything suggested to us by damn near everyone who has ever suggested something. I can't imagine there is any more I can reasonably do except wait for now and see what happens with all we are trying. But waiting is oh so hard when you're a mommy and you can't fix what is wrong with your child with the snap of your fingers or even a band-aid.
I know there are people out there dealing with so much more with their children and my heart aches for these parents. This is quite enough for me. I pray, desperately, that this is all it is and we are doing right by her. As we wait....
