So here's a little update on the situation on the twins. I warn you, it may be long. Take a potty break now. (chips and dip wouldn't be a bad addition, either)
As of today we have seen all the major specialists. It was a big relief to have that over and done with. The Bunny has seen an Ophthalmologist and will need glasses. I am not particularly jazzed about this for a couple reasons a) kids' glasses are ugly. Seriously ugly. Why they can't have cool glasses like I have in a smaller size is just beyond me. b) I can't get either of them to keep track of their sunglasses for any length of time- and those were $5. The fact that these glasses will cost significantly more than five bucks makes me want to glue them on their head. c) I'm not going to sugar coat this: my kids break things. Like the other day, Grandma bought the girls lovely fairy wands. Just the kind of thing every little girl dreams about. Less than 48 hours later and Squirt has ripped a ribbon out of it. She's sorry, but still. d) There's the twin factor. Will they be ok with different frames? If they're not, how do I tell them apart? How much brain space is the glasses thing supposed to occupy? And then there's e) I just know they're never going to want to wear them- ever. No matter how much I talk it up.
But I am glad that it may be "just glasses" in Bunny's case. (Squirt will probably also need glasses- getting on that next week) Bunny's Neurologist didn't see anything super alarming- which was good. He did order a couple tests- an EEG and MRI just to be sure. I'm all about being sure. I don't know why doctors feel the need to talk me into these things. I want them to be sure!
That was, until I got the call to schedule the EEG. Bunny must be sleep deprived. (stunned pause) The nurse told me she can sleep from 11pm to 4am. Then I must keep her up until the test. Sure, no problem, lady! What am I going to do with a sleep deprived three year old for so long?! In the wee hours of the morning?! I have no idea. Do you think I will get bad-mommy-glares if I take her to a late night movie? And then what do we do at 4am?! It's not like we can just take a trip to the park! (and I don't think I want to see the other patrons of an IHOP at that hour) Plus, I would like to make sure that neither The Squirt or Little Man get awoken at 4am. Nervousness. The MRI better be much, much easier. I do want to be sure that Bunny's brain is all sparkly and awesome... but waking up at 4am makes me want it just a wee bit... less.
The Squirt's situation is a little different. Her Endocrinologist is quite concerned about her growth. He gave me a little chart that outlined what her growth pattern should be and showed me how far off she is. At this rate she will be well below 5' as an adult. The phrases "stunting her growth" and "failure to thrive" make me quite nervous. We are waiting on tons of lab work to come back for something more definitive. Said lab work will, of course, take forever. I'm not a fan of waiting.
However, Squirt's Cardiology appointment went much better. (and by better I mean it ended well) The doctor doing the ultrasound started telling me that he found a hole in her heart and it was doing some strange things that he didn't like to see. He was using big words that I wanted to look up on the internet and be the "know-it-all-mom" who gets her medical advice from WebMD. After what seemed like forever of trying to make sense of the black and white mess that was on the screen, he dashed out to get a colleague. My head was racing with thoughts of open heart surgery on my sweet and tiny little girl. I could feel all the blood pooling in my toes. When the colleague came in, he found a proper angle with the ultrasound machine, and both doctors said "Oh! Ok!" in unison. I could literally feel the weight of the moment race out of the room.
It's nothing! She's fine. Murmur is totally benign. At that point I was already on the floor picking up the delicate fragments of my heart. The relief was overwhelming... and kind of disorienting. I walked out of there like I had just done a few rounds with Mike Tyson. WHEW! We're good on the heart front, at least!
So, for the present, a lot of things have been ruled out. Which is good. I think Bunny is in the clear- I'm pretty sure the EEG and MRI will come out fine. (if we survive them!) She'll just need glasses.
The jury is still out on Squirt. There are still some issues left on the table. I'm really hoping that we'll come out the other side with a hearty "she's just a small kid" diagnosis. That would certainly be the best case scenario. For now, I'm waking up each morning telling myself that I can handle whatever is coming. I'm one pretty tough broad. (when I'm not sobbing in the car... and buying "lucky" jewelry... and using chocolate cookies as a crutch) Cautiously optimistic. For now.
Have I told you that I believe in miracles? Because I do.
There are adorable glasses out there- I work for an optometrist and sometime I see kids frames and wish my kids wore glasses- yes, I am a bit sick. Check around- opthomologists do not specialize in glasses, therefore they do not keep real up to date.ReplyDelete
On a serious note, keep your faith. Miracles do happen and you will never be given more than you are able to handle. You have been promised that. Just keep relying on those prayers and cookies!!!
ahhh we will STILL keep praying for you and well the survival of the MRI- those are tough, very claustrophobic feeling- hard for a little one- but you can do it and so can she! and I will make you chocolate cookies anytime:) keep us posted- been thinking about you a lot!!!ReplyDelete
Oh, we are thrilled to hear that things are looking up and Hope is praying for "the twins" each night. The heart thing must be a HUGE relief! Hang in there and keep buying jewelry--it never lets you down!ReplyDelete
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Glad for some relief for you guys! My nephew was just diagnosed with 'failure to thrive' and a heart murmur at age 11. How strange is that? They are still trying to figure out his issues, but basically at some point, full meals started hurting his stomach, so he learned to just eat a few bites at a time. Now he has to re-learn how to eat properly.ReplyDelete
Still praying for y'all and hoping for more good news!