Tuesday, July 26, 2016

what it wants.

MRI was supposed to be today. Because of a water leak that somehow spread to the MRI bays, we were moved to tomorrow morning at 7:30am. ::yawn:: I was up early on Monday because we had to go in first thing for the test that decided whether Reese could stay off of daily cortisol.

She has taken cortisol since she entered the hospital in 2012. So, 3x a day, I would give her the dose to avoid a potential adrenal crisis. For MRIs or surgeries, they'd stress dose her, but then slowly things changed. We never upped her dose, no matter her weight/growth, we stopped stress dosing for MRIs, and I went ahead and fought for her to be weaned. It was an emotional process, really. I cried wondering if I was doing the right thing, didn't know if I should go to another endocrine office for a second opinion, I searched the internet for other kids that might have weaned after being on a replacement dose for so long. Finally, her endo agreed to taper. We weaned from January to June... slowly... and then we stopped. I almost tried to go back, at the end of the school year, thinking "maybe she is more tired. maybe I made a mistake." but I pressed on and things totally were fine and, yet again, Reese proved that her body does what it wants to.

This is the second time that endocrine has said "well, that doesn't really happen" and it did. She is fully weaned of cortisol. Reminiscent of when we stopped with the ddavp for the DI, back in the day (over 3 years off of that now), I was amazed at what our bodies, what Reese, can do. So now she only takes her daily synthroid, and really, we will see if she even needs that soon. Surreal, really.

We are heading into month 20 on vinblastine - a protocol that was supposed to be a year, but has held us stable for so long throughout. MRIs are different now. I do not have the same sick feelings that I did before. Instead of fearing that we wouldn't get shrinkage, I simply am curious as to how "stable" we are. Her MRIs read, in more scientific terms, "a little less here, a little more there, overall stable". and it is almost as if a weight was lifted off. I can't really explain it, but only to say that as time goes on, I realize that it will do what it wants and we will adjust the course as needed, with many plans ahead of us. I don't mean to say I have become unemotional to the process, because I certainly have not. I still get sweaty palms the second they walk into the room to tell me about the results, but the pre-MRI vomiting has subsided. Not being able to eat for days before is behind me most of the time. I hope people read this as hopeful, I guess. You don't become jaded, but just simply understand that you are not in control of what is going to happen. You are simply informed of what has happened and then can adjust your course.

This summer has been really amazing and has flown by. I can't believe that next week will be August and soon I will have a 4th, 3rd, and 1st grader. This time last year, I would cry at the thought of Reese in school all day, but now she is counting down to her new class, to see her friends... the other day she carried around a picture from her christmas party last year and showed anyone who would listen "these are my friends" and would name them all. We have been to the pool countless times, we play out in the sprinklers and slip n slide, we go to dance, we get ice cream just because it's hot... It's perfect. Each girl has their place in the day, their chores, the things they help each other with regularly, the sister pairs that play certain games with each other while other sisters run off to do something else.

Each day seems to crawl by, but quickly, a new week begins and I am left with the memories that we've made. Summer 2016 is a win.

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Wednesday, June 22, 2016

june.


It's hot. Most of the month has been spent in water. The girls are happiest in water - lake, pool, ocean, whatever. They want to be with the sun and the splash. 

This is just a pic post :) All photos taken with my p&s (not my big dslr). 

























Wednesday, June 1, 2016

before school ends.

Last August, I pleaded in prayer, with anticipation, with excitement, and with fear... I wrote an open letter to Reese's potential teachers and classmates to simply get out my emotions.

This year has superseded any expectations I may have had.

I asked you to be patient. And you were, you so were. You waited on Reese to answer questions, you gave her time to think. You helped her recall that piece of information that was back there somewhere - and if she couldn't you guided her toward the answer as seamlessly as you could. You watched her squeal with excitement when she understood something and immediately conjured up a plan to aide her with what she didn't.  She never felt rushed or as if anyone was frustrated with her. She took her time to learn and you gave her that time without hesitation. You are so patient.

I asked you to be safe. No one outside of our family is seen as a safer place than her teachers and friends at school. They are who she lists that she loves, they are who she trusts when I make decisions that may change that day's schedule. No one was ever threatening to Reese and she learned each rule and regulation of the classroom with nothing but smiles and hugs. You let her cuddle you each time that she asked - and I do know that sometimes she knew right when you might have needed it. You gave her jobs when she felt aimless, you gave her strength when she looked defeated. The trust she has does not falter - and along with that comes so much love.

I asked you to be kind. I could not have written a better end to a kindergarten story than the friends that Reese has made. No one saw her "bad arm" as a problem. No one cared about her teeth being gone - except that they wish that they had lost theirs, too. When Reese was gone for chemo at first, they worried - truly worried. Her friends get emotional when Reese is hurt. The kindness shown by 5 and 6 year olds outshines most adults that I know. They defended, they hugged, they cheered every.single small victory. They pushed her hair out of her face when it brushed over her eyes. They wrote her notes of love. Her friends think her AFO boots are cool and that her having a resource teacher for some pull-outs is jealousy worthy, for sure. She was never left out, lest another friend set them straight. She is wanted and needed and loved and she feels every bit of that.

I asked you to be diligent. I slightly chuckled at myself when I re-read this one as within the first weeks of school, I asked them to be LESS diligent since I was getting numerous calls because everyone wanted to keep me in the loop. She figured out the bathroom in no time and her playground aide was gone quickly. They even built a ramp for Reese to walk onto the playground with because the step was very large. Every detail was taken care of. If she was falling behind, we re-organized her services. If goals were passed, I got calls about adjusting those. The care taken for this year was so supremely planned that I was able to sit at home with my coffee and laptop and feel nothing but overwhelming peace.

I asked you to be you. And wow, did I get some amazing people in our lives. YOU were what made Reese succeed. YOU were what made her love school. YOU were who knew what to do in all situations because you are so wonderful at your job. Every day was a blessing to Reese and I hope that you learned just as much from her. She doesn't fully understand that next year means such big changes, but some of her friends will hopefully follow her to the next classroom adventure. Every new person she will meet will be trusted because YOU are handing her to them. I apologize if that seems overwhelming, but I don't think it will be a problem as I have seen the people she has met at this school. I have walked the halls with Reese Skelte and it is nothing short of a small celeb with high fives and hugs and waves. How did she get so lucky...

My 3 elementary aged kids know that they are so special to one another. Seeing each other at lunch, in the halls, wherever always brought a story home. "I saw Aidan today!!!" was worth hearing a thousand times. "Sawyer was in the library!!" was information I may have known, but still loved having repeated by an excited 5 year old.

Kindergarten was something I could not even picture happening 3 years ago. I couldn't imagine how this would even look like. I didn't want to even go there out of fear of "what if..." But now, every morning, we jam out to dance music, unload the huge van, and shake our booties while we give kisses before they cross to the school. Tomorrow is the last day of the year and I will likely cry for the opposite reasons that I did last August. How amazingly bittersweet.




eta: last day of school pics!!























and now to compare beginning of the year on the left - and end of year on the right!!