So it dawned on me that I never updated post-surgery, whoops. Surgery day went great! It was surreal to see her back in a hospital crib again…she got all excited when she first saw it and  wanted in right away. So sad. So sweet. The hospital still feels more like home to her I think. She is so comfortable with everyone…all the new faces don’t bother her a bit, if you’ve got a name badge and scrubs you’re alright with Riley. Several of the staff commented on how easy and happy she was (surprise, surprise). One nurse asked if Riley was going to get scared while she took vitals and Chris and I both just kind of giggled. Nope, no fear in this little lady. Hell, Riley can probably take her own vitals! The surgery itself was very smooth & complication free…the procedure only took about 15 minutes. Riley took her sweet time waking up from the anesthesia while we sat staring at her and chatting with the nurse. She finally opened her big ol’ groggy blue eyes and decided it was time for food (she was NPO since midnight-never fun). After sucking down a bottle while I admired her cord free torso we were cleared to go. She slept all the way home and woke up happy to be greeted by Presley in the front yard. As soon as we were inside I stripped her down to let her play without clothes…something she hasn’t gotten to do since chemo (and let’s be honest…there was not much “play” going on during that time.) She was her happy self the rest of the day as if nothing happened…nothing phases that girl. She’s amazing.

 

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It’s been a little over a week now since the surgery and there have been no related complications. We changed the bandage the other day, looks as though it’s healing up nicely. Presley is VERY excited about “finally being able to see her other boob!” Haha. Kids. I think we grossly underestimated how uncomfortable those cords must have been for her. She slept so much better the first couple of nights and was so much more fearless with her crawling and exploring. I guess I always figured she was so used to them that they didn’t bother her…maybe she felt that way too but we both noticed a big difference since their absence. I still find myself reaching to adjust them when I pick her up or hesitating to touch her in certain places, part of me looks forward to the day that I no longer do that but at the same time I clutch to those memories a bit. The further we get from the darker days the more I want to remember them, to be grateful for how far we’ve come and to be conscious of the others who may be in the midst of those shadows now.

Last week continued on with Sundays theme of “normal”. It was nice. I’ve started working again, it’s been a challenge but I’ve come to learn that everything is. I enjoy what I do at least I did, I was so worried that the parts of my creative mind that contributed to work were going to be lost. Buried underneath the “mom of a sick baby” I’d become over the past 7 months. They aren’t. It’s still there. Channeling it may be about 5 thousand times harder than it used to be. I have had to be patient with myself though, understand that I’ve been through hell and back and to plop down in front of my computer and just “create” may not come as naturally as it used to. That my time is spread differently now. Thinner. So. Much. Thinner. That my patience may be a bit worn. That at a moments notice I may have to drop everything. That as much as I plan I have little to no control over any given moment. My plans for the day as well thought out, productive and adorable as they may be are 100% dependent on any symptoms or lack there-of that Riley wakes up with.

Friday was one of those well planned days gone awry. Again. Riley’s rash was flared up with a vengeance and was no longer contained to just her face. Her whole body was covered in tiny bumps…poor girl felt like a little toad. A couple of nights of very restless/itchy sleep had preceded so we knew something was brewing. A call into the BMT team and yup you guessed it…bring her in…today. Ahhhhhh there went my productivity..buh-bye. It’s so hard in those moments not to get frustrated but the reality of it is nothing else matters in that situation. You just go. You get in the mode and you deal. Luckily we have amazing friends…within 10 minutes my friend Kiley was here all smiles (as usual) to swoop up Presley for a day of splashing in the newly purchased kiddie pool her youngins’ were anxiously waiting to blow up. Crisis: “who the hell is going to watch Presley?” Averted. A few minutes before we were about to hit the road Chris’ dad noticed that our Saturn (the only driveable vehicle we have at the moment) had a flat tire. Well, shit. Really? We had to just laugh. Why wouldn’t we have a flat?! Even later when Riley’s prescriptions were called to the wrong pharmacy giving us a total of over $400 (yikes) we were able to call a friend who works for Kaiser and she personally handled everything for us. We had to do nothing. She even brought the medications to our house after work so we wouldn’t have to deal with going back out into Friday traffic. The woman’s an angel. Our angel. We are so fortunate. While it sounds like a stress-filled day it really didn’t end up being one…a huge thanks in part to Kiley and Yo. We giggled about the events of the day on the way home…how a day like that or any of those single things would have had us ripping our hair out a year ago but now it just seems…well…miniscule. We feel lucky to have that perspective.

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Riley’s rash has looked much better over the past 2 days which is great news. Hopefully the new prescriptions will continue to help ease her flare ups. They were sort of the last ditch effort before really exploring the thought that this is indeed GVHD…again that’s something we’d really appreciate avoiding. She’s slept quite a bit better the last few nights. Last week watching her writhe in discomfort all night was awful. We’d swaddle her arms but then her little legs and feet would start quivering and rubbing against the sheets kind of like a puppy who can’t scratch the itch so taps it’s foot excessively. Poor girl.

 

Please continue to keep us in your thoughts and cross those fingers that her skin conditions continue to improve. I’m doing my best to keep everyone updated and though my best is pretty subpar these days it’s all I’ve got. Thank you to everyone who helps keep us going. xoxo

For those who would like to help in any way please follow the links below…as always email me with any questions. Rileyjanebrown@gmail.com

Amazon Wish List:

http://www.amazon.com/gp/registry/wishlist/37IX0FPKGMSST

GoFund Me:

http://www.gofundme.com/3x0iig

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