Saturday, May 9, 2015

Cora's Update

Wow, this week has been a difficult one to say the least. It started on Wednesday with the neurosurgeon appointment. I had to get up early, wake the kids up, make Kimball's lunch and take him to the babysitter, and with my list of questions in hand I headed to the neurosurgeon. As soon as I got there I was shocked to hear Dr. Ling was out of town and that I'd be seeing a nurse practitioner. I relayed my questions to her and told her that I'm adamant about the MRI of her spine being done and she sent me on my way. I was a little confused because I wasn't sure if I should reschedule another appointment to see the actual doctor and she said no, the doctor will call you when he gets back on Friday. I was quite frustrated. The more I thought about it, the more upset I became and I was LIVID!!!

I've been waiting MONTHS to get in to see this neurosurgeon and he's the fourth and final doctor who's supposed to give the final answer about a spinal MRI. Yes, it was obnoxious that I had to wake up early and spend an extra two hours getting the kids ready and where they needed to be. I even packed a lunch for Kimball because I wasn't sure how long the appointment would be and Cora has therapy at 11:45, so I wasn't sure if I'd have time to pick up Kimball before therapy or not.

But the thing that really gets under my skin was that it had taken me months to get in to this doctor and he was the fourth one to evaluate her sacral dimple! I know I'm just a stay at home mom but especially with a special needs baby who has unlimited doctor appointments, I live by my calendar and I deserve a little bit of consideration and respect. I mean, at least some common courtesy! When I got home I was still really miffed so I called the office to tell them that a phone call would've been nice and recommend that they do that in the future. The receptionist was actually quite rude back to me so I ended up hanging up on her. When I do get in to see this doctor you better believe I'm going to put a bug in his ear about the office staff. When I think about it I'm still having a hard time shaking it off, but I'm trying to just forget about it and move on.

Thursday was neurologist which lasted all morning and ENT in the afternoon. I finally got home at 5:30, it was a long day! I brought Lance with me to see the neurologist because he doesn't really speak in layman's terms and I needed an extra set of listening ears. After recapping all the recent developments from the past three months, he ordered a repeat MRI of the brain, confirmed that there is an MRI of her spine to be done, and did a blood screening for Mitochondrial Disease. I'm glad he suggested another MRI of the brain because I was going to ask him for one anyway, Ginette thinks it'd be a good idea considering all of the recent changes. I don't know what the Mitochondrial Disease is and he didn't explain it, I'm sure because he didn't want me to unnecessarily worry, which I'm grateful for. However, he was pleased to see her progress and hear about her cognitive evaluation so there's a positive!

ENT found fluid still in Cora's ears from her recent ear infection. He sent her home on Mucinex and if it doesn't clear in three weeks then he'll end up putting tubes in her ears (which is a bit odd because it's only her first, maybe second ear infection. She doesn't get them a lot). That same appointment in three weeks she'll have a complete hearing test to check for any hearing loss. He also did a nasal scope into her throat and found the cartilage around the esophagus looked better and wasn't as floppy but there was a particular section that showed evidence of reflux. I'm sure the reflux was from her mysterious illness for 11 weeks that was shown to be food allergies. I know she can't throw up and the fundo is supposed to prevent the reflux but if there's enough force it can get through. I saw her retch on one particular incident when we were in urgent care. There's another part of her throat area that he saw was still floppy, pretty sure its the aspiration and dysphasia. He was pleased to know we already have a swallow study scheduled and a scope scheduled with the GI doctor.

This next week we have the swallow study and then the scope and eye surgery which Cora will be sedated for. I'm always nervous for any kind of procedure like that because she's such a high risk for anesthesia complications. But she's been sedated twice before so I'm sure all will be well.

To say that I'm completely overwhelmed with all of these doctor appointments is a gross understatement! They make for such long days and are exhausting, both physically and emotionally. It isn't fair to Kimball or Lance who get what's left of me at the end of the day because I'm much more grumpy and impatient. At what point do I put the brakes on and actually live life with Cora? When do I say no to testing and imaging? How do I decide which doctor to say no to and which to say yes? All of them work together on Cora and their charts interweave each other. I'm almost to my breaking point. I know I have to get through this week, I know the MRI's need done, the hearing test, and possibly tubes need done. Cora doesn't really have any "follow up" appointments where you talk about the weather and if she can recite her ABC's. This is all major stuff and it all needs to be done. But really, I'm about to my breaking point and I'm not sure how much longer I can keep up like this. We usually take it day by day but lately I've had to take it hour by hour. I always look forward to nap time and bed time, but I'd really love to look forward to play time or story time. I'd love to do the normal things with Cora instead of packing her up for one appointment to the next. Poor girl, she's such a sport and so happy. No matter how difficult this is, it is a road that I've been asked to walk. I don't know why and I really wish I knew what Heavenly Father's purpose is in all of this, I just have to hang onto that sliver of hope and keep the faith.

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