Ugh. Where does one even start with all this? I've obviously been avoiding the blog like I've been avoiding people, sunlight, health food, and anything without spandex. Mostly because I'm just no fun to be around. I've formulated a million posts in my mind and then washed them all off the map because some of them weren't coherent enough to read, had too much rage, or simply would be more interesting once I had more information. Because really, a post about I HATE WAITING FOR STUFF TO HAPPEN! Is really only a one liner.
Today I feel like enough stuff has happened on one front that at least I can talk about it. Maybe it's rambling and boring? Maybe it seems a bit too much of a pity party? If so, I apologize. Clearly I suck today. I assure you, I am aware.
Many moons ago we looked into the twins' growth, along with a lot of other issues that concerned us. That was the Fall from Hell. (it was October ish) We had pediatric Cardiologists, Neurologists, and Endocrinologists. It was a long string of tests (including some extensive genetic testing) and doctor's offices, and it was awful. In the end I think we came out with what I was looking for- they are small, but fine. The Endocrinologist actually said monitor her growth and bring her back if anything changes, but back then Me was so traumatized, I took it as an all-clear and went on my merry way to go deal with the eventual mess of the sale of our house and a couple really difficult deaths in my family. So things happened, and I was not as stringent or vigilant as perhaps I should have been about the monitoring. Looking back, I will beat myself up plenty over the things I let slide, the warning signs I missed or ignored, it will probably forever haunt me.
Close to four- maybe five?- years later I started to get more and more concerned about the growth issue. Other things had settled down a bit, and I was able to step back and see some things that made me take pause. We were buying the girls shoes for the new seasons, but we were buying them in often the same size as the previous season's. Parents around me were jealous and I was just fine being happy with this. But when I would wash their hair in the shower I would inwardly wince. I'd seen frail bodies like this, but those images had been of children who had survived horrific disasters. I tried to put it aside. I love my children, I was doing my best. I was feeding them as much as they would eat, I was buying quality food, and went out of my way to make sure everything they ate was packed with the max amount of fat/calories/protein as possible. I was trying, but I also had a life going on. I have a child struggling with eczema, and learning his allergies. (can you hear the overwhelming panic stifled in my voice? Of course not, because I'm typing, but I can assure you it is there)
I decided to take the girls back to the Endocrinologist. I was slightly nervous because it had been so long since we'd seen him, and honestly I fully expected him to glance at (it was Squirt's appt first) her stats and ask why we'd brought her back.
That is... not how that appointment played out. He was concerned, quite concerned. While he didn't exactly come out and ask me what had taken so long for me to bring her in, I'm kind of reading between the lines that this was exactly what he was thinking. It was time to take some serious action. He did lots of calculations, asked lots of questions, and made the determination: "She is SGA." That little acronym, it turns out, stands for Small for Gestational Age. I was quite confused, she was born SEVEN years ago! Isn't it a bit late to make this call, doc? And yes, maybe. But most SGA kids do, indeed catch up, somewhere around age 2, I think. We are the small percentile that isn't "catching up." So we get to do something about it. He wrote out a couple of scripts, handed me a four page informative guide on "feeding your child to grow" and sent us on our way. I was absolutely dumbfounded.
Oh, and backup a second, I had asked if we should be concerned about her identical twin sister, he looked over at her and said we could measure her with the nurse on our way out. I summarily forgot about that as I squinted in the sunlight of the morning sun with this new knowledge that things were accelerating really fast.
I cried in the car on the way to get the hand x-ray to determine Squirt's bone age. I wasn't sure if I was buying into this. If I thought we needed to push this red button of growth injections. Everything in me was opposed to the whole thing. Perhaps I just didn't want to hear that anything was wrong with my perfect little duo. Especially something so all-encompassing & daunting as this. I was told someone would call me to set up a nurse to come over and show us how to administer the injections soon. I panicked and headed to the internet where I found nothing of value. Everything was about wee babies, and I gave up. Little did I know that I wouldn't even have a ship date for the stuff one month later, almost exactly to the day. It has been a long and not-so-easy process working with all the players in this parade. (that's putting things so extremely lightly I'm laughing maniacally to myself)
During the long wait and anxiety over meds and protocols and approvals, I brought Bunny back to the Endocrinologist so she could have the full work up. I was thinking if Bunny needs the same treatment, because HI I'M RAISING TWINS, and I'm used to absolute symmetry, we should get that paperwork going asap to keep the lag time as minimal as possible. This doctor must just love to take me for hard left turns, because just when I expect one thing, he gives me another. I envisioned the appointment going one of two ways (1) No, Bunny is significantly taller than Squirt, don't worry. Quit being so paranoid, focus on the one twin. or (2) Yep, she's SGA as well, let me get out my pen.
Instead he showed me a graph with a line he'd drawn on it. "Above this line, we're not worried. Below the line, we are." BAITED BREATHS! "She's spot ON THE LINE." (because of course, I said to myself) I asked what it meant, and he seemed to know exactly where I was going, "Well, we're going to give her some time and see where she lands, but if it's below, she isn't SGA, her treatment will be entirely different from her sister."
That is when my heart took residence right near my bladder. They're roomies.
I don't know how things will fare with Bunny. I am following the super complex and trying manual on Beefing Up Your Children. Supermilk! Eggs in mashed potatoes! Feeding every two hours! Tons of DAIRY! (Remember the kid with eczema? The one we took OFF dairy? YEAH that's happening as well)
Last night I think I squared everything away with the meds and the nurse should be scheduling things with us any day now, so things are getting real, very quickly, and I am realizing that with all this uncertainty I have shielded Squirt from the whole "we're going to stick you with a needle every day" thing. And that... might be an ISSUE. That I should think about.
So. Panic attack 9:30 last night was sure a good time.
Luckily I was able to find this wonderful resource before the sleepy meds kicked in, Helping Ava Grow, and I was able to relax a bit. A mother wrote a book to her daughter about the experience with the injections and you bet your sweet bippy I bought that in a millisecond, I just hope it arrives in time. There was also a ton of resource links on the side that I've been pouring over. Most of them make me weep uncontrollably because I feel deeply guilty for not catching this sooner, for the consequences she may have to face because of what I did/did not do. That's a heavy burden, and I have a feeling every mother carries some form of this around, so group hug, guys.
Anyway, I'm sitting here waiting for another important signature-only shipment and thinking of all the ways I could be the Eczema Mom Blogger, or the SGA Mom Blogger, how I should wrap myself up in one or the other, how I feel the need to put all my strength into one of these, but everyone has too many things going on! I get a great recipe using cream cheese & buttermilk to beef up the girls, but then I can't give it to Little Man! Not to mention the Bounce House.
Which, if I can side track you for a moment, I have NEVER once regretted that purchase. Not once have I sat by and wished I had not brought that baby home. Even when I am on my hands and knees on wood floors rolling the sucker up (so Scotty won't pee on it) at the end of the night. If you're even close to on the fence of owning one yourself, I say JUMP DOWN THAT RABBIT HOLE. It's totally worth it.
That said. I went looking for a mat/pad to put under the house that would be grippy and keep it from bouncing around the darned room. I found some rubber interlocking mats, (if you follow me on Twitter, you'll also know the amusing story of how math failed me on that venture) and after walking around on the rubber mat for, what? 10 minutes? A few hours later, Little Man developed a flare up that I struggled to contain for a WEEK. It was one of the worst we had in recent memory. Duly noted: Allergic to grass, dairy, most detergents & stain removers, chlorine, sunscreen, AND RUBBER. Oh, and he's on round two of antibiotics for an especially stubborn ear infection, that makes the eczema worse too. Oh! And he probably needs tubes in his ears for the constant ear infections. BUT LATER- BECAUSE I SAID SO.
Now you see my dilemma; There is a lot going on here. No worries, I suppose about me becoming a niche blogger! Or even a regular blogger. I'd appreciate any good thoughts, prayers, etc you can send my way. We need it. On the plus side, I have gone down to eating nothing but licorice bites & Diet Coke, and boy, can I tell you what a diet that is! Lost 2 lbs just this week.
That's a whole lot to deal with all at once. *hugs* I'm sorry it all ended up being a landslide! I hope the injections end up not being as bad as you fear. I hope you only have to deal with this with one child. I hope the eczema gets easier to handle. Mostly, though, I hope you find deep, unknown wells of strength, patience, and hope to get you through this. Wishing you the best from out in the internet ether!ReplyDelete
Oh, Ashley! I'm so sorry that you've been going through all of this! I will definitely be praying for you and your family!ReplyDelete
In my efforts to beef up Marie a little, I've had to feed her a little differently than her brothers, and, OF COURSE (because we have to find SOMETHING to constantly complain about!), they complain about the fact that SHE can have pizza for lunch or that I've asked them not to inhale the pound cake because she will actually eat it, etc. I just keep telling them that different people's bodies need different things and this is what her body needs. And we talk about how I AM trying to be fair and what WOULDN'T be fair is if I treated everyone exactly the same even though their needs are different. (Your little guy may still be a bit young for that part.) A friend has some kids with food allergies, and some without, and she talks with her allergy kids about how some foods make them sick so that's why they can't have those foods.
I struggle too with the despair that comes from the many mistakes I've made as a mother, especially with the things that appear to have lifelong consequences. I'm pretty sure this is one of Satan's ways of draining our energy and distracting us so that we can't do what we CAN do from here on out. So, I just keep telling myself, "I can only do my best, I can only do my best..." and I try to use the energy I've been using to beat myself up to do what I can do at this point instead. (This doesn't always work (HOW COULD I NOT SEE WHAT WAS GOING ON?! IT SEEMS SO OBVIOUS NOW!)...but I keep trying!) (((hugs)))
Did my last comment go through? Hmmm...well, anyway, I just said that your friends who commented above had great encouragement/tips/etc. and that I'm sending love and prayers your way. Love ya!ReplyDelete
I'm just now getting caught up, and I wish I could give you all the hugs. Hang in there. You're doing a great job, and those kids are so lucky to have you!ReplyDelete
Great work man i would like to congratulate you on this effort central Florida endocrinologistReplyDelete