Today was my first appointment with the Neuro-Opthamologist. I had to do a few tests, but that was about it.. my big appointment is next week (rolls eyes that I have to do them a week apart). I was kind of annoyed that I had to drive all the way there 38 miles from my house to the office, with terrible traffic, and I barely got there in time even though I left my house an hr & 15 mins before, JUST for two little tests. SIgh... but it's important right? I had to do this test where you look into this machine, they turn off the lights, one eye is patched, and you have to look at this tiny orange laser in the middle and click this button everytime you see a little white light flash. Not bad right!? Well, it wouldn't have bothered me, but it brought me back to my PRE-E days of flashing lights, and that wasn't very pleasant. Anyway, I got my click on, and when it was done, I asked the tech how'd I do, and she gave me this fake smile & an ERrr. Yeah, that sure made me feel awesome, but at least I knew when I went in that my right eye sucks. Sigh, I will keep you all updated on my eye dr. shenanigans... they said least I will need is definitely glasses, so anyone have any good recommendations? Not too sure how I feel about glasses, Aaron says they are sexy, and while he might be telling the truth, I know he's trying to make me feel better, which is sweet. But hey, I'm happy that if glasses are all I need, I'm okay with that! A saying around our house is "it could be so much worse" and aint that the truth! I'm hoping that is all I will need, and that it will solve my headache issues. The neurologist said that my left eye having to overcompensate so much for my right eye, it could be whats causing me to have such headaches. So bring on the glasses & no more headaches!
As much as I didn't want to go to my appt this morning, I do love an open road. There is just something about an open freeway that is like therapy for the soul. Let me explain. When Libby started convulsing in the backseat on the freeway onramp when she got stung by a scorpion, well that's when I floored it and was so scared for her. Hearing her choking & puking in the backseat, and seeing her convulsing in the rear view mirror, it scared me more than I want to admit, and it was horrible. I was so scared I was going to loose my little girl, and I don't really remember thinking anything but I HAVE to get her to the hospital NOW and I passed cop cars, an ambulance, (which they both showed up at the hospital about 5-10 mins after I did) anyway, NOTHING else mattered but getting her to the hospital, and I had NEVER gone that fast. Well now that it's been a month, and that horror of the onramp, it still remains. However I get on the onramp now though, it's like it has these healing powers, and as soon as I hit the pedal, maybe it's the adrenaline or what, I don't really know. I totally get the "need for speed". I'm not really a speeder, especially after living on two tropical Islands in the last 4 years, but the onramp, I love the onramp.
It's crazy how much a like Libby & Presley are. Sometimes I feel like I'm just doing a repeat of last year, because a lot of the things are the same but not at the same time?! At this time last year, we were worrying about Libby's head growing so fast, and they were worrying about her soft spot bulging every now and then. Turns out it was some random thing she did, and it wasn't "normal" but what was normal for her. Well now Presley's has stared to bulge a lot too, and I just pray that it's the same for Presley. It scares me though, because we got lucky with it not being anything bad with Libby, and I just NEED for Presley's head to be okay. The dr said if it started to get worse or she starts to have more seizures that we need to take her in, and while it's not getting worse, it's not getting better either. I think it's the part where the MRI is looming in the background that has me up late night worrying. Presley still isn't sleeping through the night, but she is getting a little better at sleeping longer. She still wakes up at 1:30-2am for a feed, and falls right back asleep and eats again at 6am. I usually hold her for a few minutes after I feed her, but last night, I held her for much longer. She always wants to be held, but at the same time has sensory issues where she can't handle too much. So kissing, hugging, snuggling, she does NOT like that, and needs her space, it hurts my heart that those things bother her, but she is getting better. So at night when she is sleeping, I hold her close, because she doesn't mind me cuddling her when she is sleeping. Or at least she can't really tell. Well last night, right after I fed her, it seemed like she might have been having another seizure, and started screaming, but then went right back to sleep. It scared me, and I of course found myself being scared to let her sleep. So there I was sitting there in the dark and my heart just breaking really wondering about all the "what ifs" and she smiled at me in her sleep. It's moments like this, that make life worth it. Because sure I'm terrified of the unknown with her, but she has the sweetest soul, and shows me how to be tough. We've noticed on the days where she has more physical activity/ too much stimulation, she has more seizures... which is scary, but maybe all she needs is meds right!? That's what we are hoping for.
Anyway, this morning, I had to fill out a lot of paperwork for my dr appt. I really DESPISE filling out all the med chart stuff, because that's where answers get tricky. Complications, Allergic Reactions, Surgeries, Pregnancy & outcome (this one always tears at me for a few seconds), Family history (oh yeah being adopted that's fun). Anyway, the nurse took my chart and said WOW is this a typo, or did you really have two emergency c-sections in under a year!? She said it with such shock and loud enough for everyone to hear it went silent, and a simple "yep" from me, all she could say again was WOW TWO preemies in under a year. I gave her this look, like SO?! Then she told me that I was a super mom, and I deserve a HUGE pat on the back. She asked "how do you do it, how do you stay so strong" and I chuckled and give the reply I always give.. Day by day, and when it gets crazy, I remember how hard we worked for this, and that's all I need to get me through. The next part blew me away. She got all teary eyed, and said she looked up to me & I gave her hope, as she has been suffering from infertility for 2 years. I smiled, and gave her a quick rundown of my infertility shennanigans, and she told me that she was going to call into work today because she just needed a day off, but that she felt like she needed to be at work for some reason. She said that when I told her my infertility stuff, she knew that reason was ME! I think it is a little cheesy, BUT I believe fully in things like this, and it was cool for me to help someone just by telling my story. God works in such mysterious ways. While I do wish things were easier sometimes, and I stumble here and there with my faith, but having two preemies has REALLY made me lean on my heavenly father. You HAVE to believe, because there just are no other options. You HAVE to believe in the greater good, because life has so many challenges, and without faith, I just don't know where I would be. One of my favorite quotes is "where hope grows, miracles blossom" I have never stopped having hope, and hope/faith has gotten me through, and I FULLY believe that it can get you through anything. I thought a lot about faith and other things on my drive today, and I found it SO fitting that the song by Casting Crowns "Praise you in this storm" came on my ipod JUST at the time I needed to hear it (I had it on shuffle and have thousands of songs so I was impressed). I had to drive by the childrens hospital today, and that song came on, and even though my heart hurt when I saw it, I also felt comfort in knowing that whatever the outcome & if something is wrong, our faith will get us through it. So while this storm is brewing, I'm learning to dance in the rain. My new years resolution was/is to try to "worry less" and while it's REALLY hard right now to not worry, I'm trying. I LOVE this "Worrying doesn't empty tomorrow of it's troubles; It empties today of it's strength." and my new favorite quote "Perhaps strength doesn't reside in having never been broken.. but in the courage required to grow strong in the broken places" So deep, but yet SO true.
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