And on the 7th day....

Homecoming photo posed with flowers
from our dear friends the Kappenmans

Though we are actively researching and working on ways to help Solstice, our only real goal this week was to try to go seven days without an attack that required the magic medicine, in order to get the blood tests.  We did not succeed.

If you know us, not succeeding is rare, and we tend not to take it so well.  I feel so bad for Solstice.  She has been in a near constant attack since we left Children's on Monday.  She keeps saying "I can do it, I'm tough, I can last until Monday." She gets so wore out from a simple doctors appointment, that she has to have a nap when we return. She's trying so hard to be respectful and kind, but the pain is so intense that sometimes when we make a tasteless joke, (because if we are being real, that's the only kind Greg and I have...) she gets irritated with us. We of course are trying to make her feel better, doing what we can to help, but it's a matter of physioloy, not attitude. I remind myself of that constantly, as I'm sleep deprived and hanging by a fingernail off the edge.  In that state, it's easy to take things personal.

Friday Solstice went to school for a couple of hours for the first time in weeks. She even worked on her music some, it was a sweet sweet sound to hear her sing.  

Saturday she didn't look quite as good, but she was motivated by a boy named Kyle and her first High School dance, Homecoming.  We went shopping for additions to her outfit. It felt strange, the normalcy...  After months of doctors and hospitals and hard reality, shopping almost felt surreal.  I cherished every "Gawd Mom" like it was a first place trophy.  I wish we were not so tight on money, so I could have given her more than a trip to the thrift store and the dollar store.  But luckily, she understands and is appreciative of what we can give her.  So beautiful, I cried with pride when she completed her preparation.

Though the day started out scary, with some pain and swelling, it all worked out okay in the end.  The first time we tried on the dress, one that her sweet Grandma Atkinson purchased for her, it didn't fit.  As the day went on however, the swelling decreased in her abdomen and we were estatic to not have to purchase a back up dress.  By the time of the dance, she was exhausted, I could see it in her eyes.  I should have probably told her not to go, but I didn't.  She hadn't felt good enough to do anything but lie on the bed for a very long time, and this night was special.  Greg drove her to the dance in Denver and then hung out in the car for three hours, so he was close in case she had an attack or needed us.  I slept.  Thank you husband, for the chance to sleep a little, you are the best ever.

Saturday Night

Sunday Night

She did have an attack.  It started Saturday night at the dance, and by Sunday evening her face had swollen significantly.  We tried to wait it out, just twelve hours away from the blood test, but her throat started to swell again, and suddenly we were back in the car driving 90 miles an hour down the hi-way to get her to the hospital. She recieved the magic medicine, pain relief, and we were back home three hours later.  I can't wait until tomorrow, the official day that Children's Hospital North will have the magic medicine in stock for us.  It's not fun having to educate every new set of emergency room doctors.  They are excited about this rare disease, sometimes even wanting to chat about it.. meanwhile my child's throat could close any moment.  Most pharmacists have never mixed the drug, so they are super freaked out by it's expense.  If nothing else, this experience is teaching me patience in a whole new realm.

It seems like such a risky game, trying to get these tests.  The doctors at Jewish didn't seem to focus on preventing the attacks. They did not act to help me get access to the magic medicine at home, nor did they think we should begin attempting to control the attacks asap.  I couldn't even get an appointment to begin prevention medication at Children's until the end of this month, and with two seperate occasions of throat swelling, this is a game I have decided not to play.  I assume they are super excited to have a local kid to test their new diagnosis research on, and I too am excited for an official diagnosis, but not at the cost of my child's life.

Solstice looked at me twice last night with tears in her eyes saying "I don't want to die Mommy."  I wish I could wake from this nightmare.  Until recently, in the last four years since new meds came out for this disease, the death rate was 33%.  Solstice says it hasn't changed, and that little girl has researched perhaps even more than I.  The fact that her throat has been effected by swelling twice now increases her risk.  I am so scared, I can barely sleep.  She too is so scared, and I don't know how to comfort her other than to keep writing this blog, keep asking for help, keep demanding great care.

Luckily for us, we have two really great rockstar women doctors on our side.  The doctor who made the diagnosis Dr. Shannon Hill of Broomfield Family Practice fit us in today, and we looked over a study I recieved  from Jewish National Health.  It said that there is a chance that we can use a female steroid to avoid attacks.  So, as of a few moments ago, we started that medicine to see if it will help.  Cross your fingers, but only on one hand because Solstice says if you do two, you reverse the wish effect.

This female hormone is a non-estrogen form of birth control. I never imagined that the birth control use would come due to a disease, instead of true love like it does for everyone else.  Additionally, I had to discuss which narcotic to put my fourteen year old child on.  Should we go with Fentynal or Duladid?  It's just so fucking unfair.  Why does my baby have pain that requires that level of meds?  What kind of sick disease that causes the worst pain on earth paried with an allergic reaction to normal pain medication.  I'd do anything to trade places, to take this all away.  But until we get the disease under control she lives with pain between a 6 and 10 every moment of every day (on a scale of 1-10).  We tried to do without them this week, as she doesn't want to be on them, doesn't like being fuzzy, but it just made everything worse.  We were lucky enough to start a patch today that will work for 3 days at a very low dose.  So, hopefully it will at least take the edge off and still allow her to focus normally.  Today I am thankful I have doctors who understand the level of pain, and are willing to work with us on finding something to help.

If you're wishing you could help, I do have a request.  Because Solstice's abdomen expands so much during an attack she cannot wear most of her clothes.  So if you have yoga pants, sweat pants (size 12-16)with an adjustable waist), or large tshirts you don't wear, please consider sending them, or dropping them off to us. The other thing that would really help is a really nice heating pad.  We have one, but it goes in and out.  Wet heat is very nice to a painful belly, this would be a gift that would keep giving for a long time.   We have spent nearly everything we have on getting this diagnosis, and because it came right after we put everything on the line for Green Monkey Smoothies, our new business, we are hurting pretty badly fnancially.  I wish I didn't have to ask this of you, fess up to our situation, but if it helps make Solstice's life easier, I'll do it a hundred times.  If you happen to have some old clothes that would help her to feel pretty in these moments that she gains up to twenty pounds in hours, I sure would appreciate them.  Email me if you need an address.

As always, thanks for reading and please share Solstice's story.