Right on time.

It’s here. The “post crisis/post admission” aftermath…right on time. It always shows up. I crush the game in crisis…in the hospital I am good. It’s almost superhuman. I can function on no sleep, I am the damn positivity “we’ve got this” queen. And then…something happens. Something good. We get good news…or no news which in this world I consider good. Or we go home. Or she gets better. And it’s good. It’s all I’ve wanted. But then it happens. That superhuman I was…that girl leaves. Or actually she stays…that version of me stays in the hospital and my mortal/broken/traumatized shell of a self trudges back into the world KNOWING that when I wake up the next day it will all come crashing down around me. For years I didn’t understand it…I didn’t really talk about it, I acted like it wasn’t there, I internalized it. I thought I was weak. I thought there was something “wrong” with the way my emotions functioned. How could I be ok seeing her body riddled in cords but be so NOT ok once said cords were no longer needed? How am I ok when she is not and then wrecked when she is? What. The. Actual. {insert expletive here}.

I know now that there is nothing wrong with me, that I am in fact not weak or crazy. Knowing that however does not change the course of events that will play out for this process of mine. However it does change how I will react to it. I went to bed last night knowing when I woke up my entire body would hurt. I mean, hurt. It did. It does. It will for the next 2-3 days. Food will be hard for me, tears will be constantly trying to fall, anxiety will be at all time highs, self-judgement will consume me, simple requests like “Mommy want to play?” will feel painstakingly impossible to fulfill. Instead of fighting it I’m learning to lean in. To listen to my body and mind and attempt to care for it the way I do my children. To not fight the tears, they’re falling now…running down my fingers and onto the keys as I type. To not force myself to feel any way other than I do in each moment. I am breathing in my own advice on the inhale…”it’s ok…” on the exhale “to not be ok.” This PTSD of mine…it deserves respect. This broken girl that I am waits her turn…every damn time. She keeps quiet so Riley can be heard. I have to stop telling her that she is not welcome. I have to stop treating her like she is wrong. This pain, this process…it’s valid…so very valid and necessary and in about 5-7 business days I know will see it as beautiful.

Riley is home today due to a virus outbreak at her school that her team has no interest in her being a part of. She is sleeping now, giving her body the rest it’s due. As for me, like I said…I’m leaning in…a few moments ago that looked like writing and crying…now it looks like crawling right back in bed with her. Alright broken girl, I hear you…let’s rest.

Baby Riley pc: Meg Perotti : Photographer : Little Meg

August 26, 2013

So you know the feeling when you have a doctors appointment and the first step is to take a seat in the little 10×10 waiting room that smells a little funny and undoubtedly has some sort of 1970’s decor still lingering? Occasionally someone pops there head out to say “the doctor will be with you shortly” or “please fill this out while you wait” but other than that you just twiddle your thumbs…yeah that’s what we are doing. Our room is basically a waiting room but instead of last months magazines and bold printed chairs there is a bed and a crib.

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There hasn’t been much change since we got here other than more tests have been run giving us more results to wait for. They have not yet determined which form of SCID Riley has, I believe there are about 14 known forms and as of now she doesn’t seem to fall in line with any of them. She is their little mystery SCID kid 🙂  The “cure” no matter what form she ends up falling into or if she is some new undiscovered case will still be the bone marrow transplant so we will  be going on forward with that as treatment in the meantime.

Chris and I met with one of the bone marrow transplant doctors on Thursday and spent about 2 hours in what felt like the end of one of those prescription commercials where they tell you EVERYTHING that could possibly happen. The doctor was amazingly thorough and really had a way of breaking down all the crazy medical jargon in a way that we could follow. We had tested Presley the week before because as a sibling she had a chance of being 100% match which would make her the best immediate donor option for Riley. The results came back and Presley is not a match. Feelings on that were mixed…obviously some dissapointment because now the search for the next best thing begins but with that there was an overwhelming sense of relief. This is all heavy enough so putting our healthy 3 year old through procedures to help save our newborn was a moral/emotional rollercoaster I am pretty glad we won’t have to ride. That being said, they have now started searching the bone marrow registry to see if there is an unrelated donor that could potentially be a 100% match. If they are unable to find someone or the process takes too long then we will be going with either Chris or myself as the donor. Chris and I are both half matches (simply because we are her parents) this type of transplant is what they call a haploidentical transplant. They are very optimistic on the results whether we end up finding an unrelated donor or going with one of us there are just many different variables that play into it and options that will be weighed over the coming weeks.

At this point we are probably still 3-4 weeks out from transplant and looking at anywhere from 4 weeks to 6 months here at UCSF post transplant. As far as Riley’s day to day condition…she is perfection…developing right along like a normal 6 week old. She weighed in at 10 pounds 2 ounces this morning, she eats great and poops even better. Her smile and little sounds are more adorable by the minute and I simply can’t get enough of her newly developed rolls.

Again there are really no words to describe how grateful we are for all the support we have recieved. I will continue to do my best in keeping everyone up to date on the latest.

I have attached the link below if you would like to donate or share the donation page with your email contacts or social media channels, thank you again.

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

August 14, 2013

We are on night 5 in the hospital and the reality of this “hurry up and wait” process is setting in. Everything is pretty routine day in and day out…nurses check vitals, doctors come in and talk, more nurses check vitals, more doctors come talk. Riley is totally content; it truly is amazing how little a baby really needs to be happy…dry diaper, bottle and Mom…that is all. More labs were done today on Riley which basically means more blood draws…this little lady is such a trooper. Friday she slept through an IV being placed and both yesterday and today she barely made a peep during the blood draws, I cannot say enough how fortunate I am for her sweet demeanor. The immunology team will use the results of all of these tests to determine the form of SCID she has and how best to proceed.
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Chris brought Presley up again today to visit and also make another attempt and getting a cheek swab to see if she is a potential match for bone marrow transplant. She got really creeped out by the process yesterday but today was a new day and after we talked to her we were able to understand her concerns and do things a little more on her terms. After huddling on the floor playing “doctor” and letting her give us (chris, myself and the real doctor) “shots” and “checkups” for a good 20 minutes she plopped on my lap and was ready for her turn.

Her understanding of this whole situation amazes me, we have done our best so far to remove as much of her fears from it as possible and break things down to her in basic concepts that her little mind can grasp. It has not been easy but given the circumstances she is handling it all very well. We enrolled her in pre-school which she will start tomorrow; we feel it is really important to keep her on a consistent routine and give her something that is all hers, something that will be a distraction from missing Riley and I but also something to help her continue to thrive.

We are now awaiting lab and donor match results, in the meantime we are to simply keep Riley in this room to limit her exposure to any sort of infection and keep her healthy until we can proceed to transplant. This process could still take a few weeks so patience is the name of the game.

Thank you again to all who have called, texted, baked, donated, chased Presley around, etc…over the past week, every little bit helps and we are so thankful.