The Holiday

Merry Christmas, Happy Holidays, Channakuh, and the like.

Overall, we had a great day, Solstice though in a lot of pain, worked hard to have fun, laugh, and be in the spirit.  There were quite a few moments however when she was just laying down in pain, and it hurts me horribly, even more so on a holiday. Leaving her tonight was the worst, but since I have a serious cold on top of a sinus infection, I had to spend the entire day not touching her, breathing deeply into my mask, attempting to convince myself that I could breathe my own hot air and be okay.

I eventually got used to it, and didn't  notice it as much any more, such is life.  It's interesting what you can get used to.

Life changes when you're child is sick.  Seeing young families walking down the street makes you feel as though you are on the outside looking in.  It separates you from your family, your friends, and makes you realize what is really important.

Solstice didn't recieve many gifts.  Since she is feeling better, we've been giving her a lot of books and activities the weeks prior to Christmas.  Luckily, she understands that, understands what financial stress we are under, and is thankful for the time with her family.  This is what I pulled off her facebook page: My family is giving up their home Christmas to spend it in a hospital with me. ♡ the holidays are not about where you are at or what you receive, its about the people you choose to spend it with. And I have some pretty great people. — with Olivia Norton and 2 others.

Today I am thankful that we have such an amazing Doctor, one who is willing to spend time, thought and energy on my little girl.  We've never had such a thing, and I am absolutely in love with Denver Health and the treatment in the ICU wing.

We don't expect Solstice to be released anytime soon, however she is now eating chicken, rice, carrots, grapes, apples, cantaloupe, coconut, and drinking rice milk.  With only two days until her 15th birthday we are trying to figure out a way to put all of these things together, maybe even whip up some vanilla pediasure in some sort of birthday like mound.

She is having a party in "the zone", an area donated by Garth Brooks on Friday.  Though she cannot have many guests, she invited the children from ICU, and although she cannot eat it, she asked us to supply a cake for the children who could.  "Bring Chocolate, I don't like chocolate cake, It won't hurt as much."

Acceptance is half the battle, fighting hard is the other part.  Luckily this little girl has it all.

I hope this day finds you and your family well, and thank you to everyone who has donated and helped us on this seemingly never-ending journey.  Without you, Mama would be in the sanitarium, of this I am certain.

Love and well wishes to you all,
Amanda

Losing It...

Solstice has been in ICU at Denver Health for 4 days.  She is now on a pick line and receiving her food intravenously, as of now, they don't know if she will ever eat again.

I have people from all over the world contacting me saying their children have the same reactions, the same situations.  All of them have been diagnosed with different diseases, and I am at my whit's end.

You know I worked for +La Tour Restaurant for over 10 years and when I asked them to put her blog up on their facebook page, hoping all those people that I served via the office and reservation for so long, one of them might have an answer, they said it wasn't business related and told me they wouldn't help.

On Thursday +Rocky Mountain Hospital for Children a new doctor walked in, pulled the oxygen from my child's face and screamed that she needed a psychiatrist, they released us as medically okay, even though she was having up to 7 attacks a day and couldn't eat anything without her throat swelling, at one point they even refused to treat her throat swell with benedryl.  Within' 3 hours she was in ICU. Why?  Why us?  Why is no one helping us?  She can't live like this, even her good days are worse than anything I've ever seen. The doctors at Denver Health asked why in the world Rocky Mountain didn't add a pick line, they can't even find a vein for an IV anymore.

I lost it at the hospital, with that doctor, and Greg has been trying to keep me away, with just a three hour visit each day, as I have been with her every night since this nightmare began.  I'm not very good in the hospital.  If you know me, you know that unless I'm doing computer work, I don't often sit down. The hospital drives me insane, but so does not being with my child when she is in pain.  I cry more out of the hospital.  Things are getting more serious every day, and I don't know what to do to save my child.

From Solstice feeling anxious
"Im literally allergic to life. Im allergic to the hormones my body makes, I cant eat or drink without attacking, they cant put a feeding tube in because they need that space for intubation (breathing tube) so, I get to get nutrition through my iv and pick lines. Maybe for a couple days, maybe forever. Could you imagine never eating again? Its honestly come to either that, or death. 2 days ago a different hospital overdosed me with epinephrine. It was the most painful thing I have ever experienced and it made the breathing situation worse. The people at Denver Health are incredible. Finally trying to help and trying new things. Now if youll excuse me, need to go get poked and prodded by a bunch of scary nurses and doctors."


I don't know what to do anymore, I can't imagine living without my child, and I can barely remember the child that sang from the moment she woke up until the moment she went to sleep.  The child that flew down ski mountains, and laughed as loud as she screamed.  She is mentally, physically, and emotionally wrought, we all are.   Now she can barley walk, and never sings.

I am getting angry, very very angry.  At people I believed to be my friends that never call, at the Ferzacca's for refusing to help, at the doctors, who when unable to explain the illness claim it's in her head.  I need to punch something, yet I know that won't help.  It seems as though nothing will. So, here I sit, crying, hoping that someone will figure it out.

Amanda

 

Another Never Ending Attack

It's been a while since I wrote, so many thing on my plate, it's hard to find time to jot down my throughts, though all the new research, new meds, new doctor visits we have.  I'm sorry I haven't stayed up to date with you.  We had a magical 5 days that Solstice had only mild attacks and we were not in the hospital.  We went to celebrate Olivia's birthday at Wine and Painting class, and redid Solstice's bedroom.  She had a couple of sleepovers, as friend time is so rare, and then we attempted a party on Sunday night that landed us in the Vail Valley Medical Center.

Solstice wrote a song to sing on Ellis birthday, as she is the person who did the fundraiser for Solstice while we were in Cincinnati, one of the only reasons we were able to pay rent and continue caring for Solstice this last month.  It was an adorable song, about saving her life and thanking her for caring.  Shortly after, Solstice started to feel sick and before we could get out the door she had a throat attack.  We hit her with an Epi pen and then Benedryl and called an ambulance.  The gut buster of the evening is since Solstice was in an unused dining room of Blue Plate, many party goers did not realize what was happening.  As the Vail Firefighters (known for their hotness, and no Ryan didn't show up) were dispatched into the restaurant, the girls started screaming... YES WE HAVE STRIPPERS!  WHOO HOO!  The sadness on their face when they realized it was Solstice and not strippers, was something I'll never forget.

Vail kept her for a day, as I was hoping the attacks would end, but they didn't and we had to be brought down by flight for life via ground crew to Rocky Mountain Children's.  She has been having nonstop attacks, up to six a day for days now, and she is starting to get really down.

You see, she has a cyst on her only remaining ovary (she had the other removed for a dermoid cyst a year ago) and it's causing immense pain every time her tummy swells, which causes more pain, thus more reaction.  This disease has no real triggers, no real way to control, and it never ends.  She has said many times today that she would prefer to die than to live this way, and it is the most heartbreaking thing I have ever heard.

I am meeting with the OBGYN today to see if we can remove it, and I am hopeful she will understand how important it is that she gets this thing out.  It's grown from 5 mm to 2 centimeters in three weeks.  If it busts open, her body will not be able to handle the toxins and she could be hospitalized for months, or as always, what could happen everyday, she could die.  It's also causing major pain, which increases her stress, which causes her to re attack.  It's a fine line every single day.

I feel so out of control.  I have people say a lot of strange things to me, and I know that all of them mean well, but the one that is most used is.. "Well at least it's not cancer."  The reality is, we would choose Cancer over this condition any day.  Cancer has research behind it, Cancer has good survival rates, Cancer has an ending, either you get cured or you die. And if you do die, you at least have some warning, to come to peace with it.  We, on the other hand are faced with the reality that we have no idea what could set her off, which of her throat swells could be life threatening, and anyone of us, the hospital, Greg, Me, Olivia, could make a mistake and misjudge the difference between a slight throat swell, vs an anaphyalixis episode and she could die anytime, any moment.

I know that I could forgive my husband or my best friend, but I know I could never ever forgive myself.

You see the National Organization says that at the site of throat swelling you must EPI pen and go to the hospital immediately.  But Solstice has a lot of throat swells that give the sensation of not being able to breathe, as her throat swells slightly, but  not completely.  We are able to control it with Benedryl and resemic epi (anti-inflammatory that is similar to a nebulizer treatment.)    We can't give the kid Epi's six times a day, and we can't spend the rest of our lives in the hospital.  We have to find a way to judge the difference, and all the research tells me there is no way.  She can go from fine to dead in minutes.

I don't know what is right, what is wrong, what I can do to save her, how I can help her... except to be the best advocate I can, and hold her hand through the pain episodes.

Please be thankful today for your healthy children, and feel free to donate if you have a few extra dollars.  I am unable to work, and right before Solstice got sick, Greg quit his corporate job to start our new company, green monkey.  Life is throwing us curve ball after curve ball, and one of these time we are going to forget to duck.

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New Diagnosis?

I've hesitated to update you all up on what is happening here in Cincinnati, as we have had a possible different diagnosis, but were stuck in limbo waiting for test results, and then a trial on new medication, to assure they were correct.

I think I'm finally comfortable in our new diagnosis. I am seeing Solstice improve daily, and although she will still swell for the rest of her life, have pain for the rest of her life, it seems that we spent our life savings on a wrong diagnosis.  Borrowed money from friends to get by...let bills to to creditors...months of our time spent in hospitals.  Now, it did eventually lead us to a correct one, but in the meantime, I stacked up huge hospital bills, and most what is most discouraging is that by treating the wrong disease we made her pain worse instead of better.

That is the reason she was at death's door when we arrived here. The medications to treat HAE are far different than the ones to treat her new diagnosis. Chronic Idiopathic Angioedema. Idiopathic means essentially that they do not know where it comes from, and chronic of course means often and forever.  This disease is in the same group as HAE, it has almost identical symptoms, identical pain, identical triggers, EXCEPT IA (idiopathic angioedema) patients have a specific trigger to blood products.

You know like the plasma based medicines that we were giving her. So, they would stop the attack in her throat, but never touched her tummy or knees, and as they worked their way though, they caused another attack, which caused us to give her more, which caused another attack.. you see where I'm going with this.

The entire time we were slowly killing her when we thought we were doing the only thing we could to save her life.This is so difficult for me to type, knowing that I did such harm to my child, all while trying to help.

What's funny is that Vanessa Williams was putting her into a documentary about Idiopathic Angioedema, when we believed her to have Hereditary because she couldn't find a kid willing to do it with IA.  I should have picked up on that.  My life has a tendency of pointing things out to me. It's another matter if I am paying attention or not.

Hindsight... I seriously could just kick myself..

So, here is the story. We arrived in Cincinnati to see Dr. Johnathan Bernstein Thursday night, our appointment was at noon Friday.  Being a researcher and one of the top HAE doctors in the world, he wasn't much of a people person.  I had been sending medical records for a month at this point, so he had almost everything.  I brought in the most recent medical records, from the most recent hospital, and he accepted them and sat down at a desk that didn't face us.

He moved papers around, read a few things, and asked a couple of questions and then said "I don't think she has HAE."  Now, to give you background when I was on the HAE facebook group several people warned me against seeing him, saying that they had seen him and he had told them the same thing, but other doctors had assured them he was wrong. So, though I knew him to be at the top of his game, I still had that other info rolling around with it.  I mean you don't get to be on the National and International board of HAE if you're a dope.  Besides, it seemed to me that during my interactions with him, he seemed to be a caring fellow. (I'd been in contact for at least a month prior.)

So I say, okay sir, you're the man, what do think she has.  To which he replies, I have an idea, but I'm going to call my fellows over at Children's Cincinnati and get you inpatient at this facility.  We went and grabbed some lunch across the street, came back and waited about fifteen minutes while he made the calls, and true to his world he got us right into a room.  We went through admissions and then literally went directly into a room. This has never happened, we have waited up to 7 hours for a room before.  Still with the drive, the admissions it was probably close to 6 pm by the time we actually settled in.

The first few days were the weekend, hospitals don't move very quickly, and all the fellows and residents are on, they continued to treat her attacks with the meds we brought with and then brought some in from other places because they are so expensive and hard to get.  On Monday our real team assembled (we're the red team) and they spent a couple of days going mountains of records, on Thursday they came to me and said that the genetic test results had come in from National Jewish, and they were negative for HAE type 3.  They suggested that they believed it to be IA.  They started her on the new meds Friday, and now on Sunday already she is so much better, it's nearly a 180.  She is still attacking daily, but only daily, and I hope that we find a med list that improves that even more. She is walking (still has balance issues) but she can walk for up to 8 or 10 minutes at a time now. We are still at the point of trying meds, to see what works and what doesn't.  As many IA patients have a lot of sensitivities to drugs.

I was sure I was risking her life by bringing her here.  I was so scared she would come off the plane with permanent brain damage, or paralysis.  But I had no choice, and it turns out, it was the right choice.  The medications to treat this disease don't cost a million dollars a year.  They are made up of epi pens, steroids, and antihistamines, until they find another option.

I can't wait to call the insurance company and mention that the next time someone needs a medical transfer, they should give it.  If I hadn't had you all, or for specific to this case, Scott Archeletta to pay for our plane tickets we could not have come.  I have literally saved the insurance company millions of dollars, while saving my child's life.

This disease is also very rare, and the research on this one is even less than HAE.  I'm having issues finding information, because its usually just a paragraph or two on certain articles about HAE.  I asked my doctors for this, and they provided me with two articles that are exactly the same, 2 paragraphs of info that don't give much info.

Luckily we have Vanessa who is making the documentary Solstice and her music are set to star in #Lifewithoutafork and should be completed late in March.  I am attempting to utilize her as my patient advocate, but so far the hospital hasn't been too on board with outside assistance.  But as always I will continue to fight until my child gets the care and treatment she deserves.  I'm asking them to give her higher doses of antihistamines for a week or so, so we can kind of "reset" her body, as it's been in a constant attack for nearly five months.  One dose of one antihistamine is not working.

Their promise upon me coming here was that she would leave with her quality of life restored.  If she is up all night in attacks, with massive pain... how will she ever attend school?  Hold a job? Any of those things regular folk like and and I do?  They are assembling a care conference tomorrow, with everyone involved in her care to find a better plan.  I hope to be home for Thanksgiving, but for now everything is up in the air.

The hospital is amazing.  Really amazing, but I also feel that they prefer to air on the side of caution and are not always as aggressive as they should be.  After months in the hospital, I've learned how to mellow out, how to calm myself, and how to match their unwitting ability to talk in circles, and throw it back at them as they do me.  Maybe I have a future in corporate America after all, smile.

But for now, Solstice is getting better, she is still in a lot of pain, but so much better.  I am thankful for the hospital and the staff, and for the amazingly strong parents I have met here.  I can't believe some of the stories I have heard, and how often an illness in your child doesn't ruin either their or the parents life, but in fact makes us stronger, better, improved somehow.

As you can only cry so long before you have to stand up and start putting one foot in front of the other, even if you don't know what direction to go.

Special thanks to my friends, Elli & Adam Roustom, their staff, and the entire Vail Valley for the pulled pork fundraiser last week at Blue Plate.  Though we still have a long way to go before we can find our way back to where we were financially, you not only gave us some to start, you also rewired my heart, and reminded me that I am not alone in this fight.  I don't have to put my head down and be her only voice.  There are many people that are willing to help, and that is the best feeling one in my position can imagine.

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Please Visit Blue Plate Today for lunch and Support Solstice

Thank you to everyone who has donated money, the Vail Daily and Randy Wyrick for the fabulous story, KYZR for radio spots, Copy Copy for printed materials, and most of all Chef Adam & Elli Roustom for donating their restaurant, their time, the food, and most of all for being true friends.

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Cincinnati Children's Hospital

We made it to Cincinnati, at 4 am. The flight was delayed due to issues with the plane. We were all loaded on 50 minutes late, then unloaded to wait for another plane. This was after being stopped at security for the 50,000 dollars worth of drugs that were in our bag as carry on along with needles and such. That wasn't as big of an issue as the fact that my laptop tested positive for bomb materials. I know I'm explosive, but come on...

So, though the first part of the late plane was a blessing, it stressed Solstice out, and she had to self infuse in the middle of the airport. We had been preparing her for this flight for days by pumping her full of drugs it worked! This video makes me smile.     By the time we boarded the flight I had been awake for nearly 48 hours. I ordered a wine, took a drink and passed out instantly. Our friends from Leadville Jessie and Brett live just 2 hours away in Northern Kentucky, and Jessie drove up and took us to the hotel. Thank goodness she's a patient person, as she waited over three hours at the terminal. Friday, Brett drove up and picked her up, and they loaned us one of their cars until the 23rd. Such wonderful people to go out of their way.

We made it to Dr. Jonathan Bernstein at noon later that day and within a few minutes were told that Solstice's symptoms did not line up completely with HAE. He stated that either she has HAE, and something else additional that is creating non-stop attacks, or she has been misdiagnosed. He immediately placed us in Children's hospital.

I feared flying because I know for certain in my heart there is something going on in her brain. She loses her vision, and she has these seizure like things during an attack. They are getting worse everyday, and her attacks are coming on faster and faster. I seriously believe we got here just in time. Mama instincts are powerful things.

This is the hospital where HAE was discovered as a disease. They are testing her for another form of Angioedema called Idiopathic, and our genetic mapping test results should be in by the 20th.

Cincinnati Children's Hospital is a totally different place than most hospitals. This morning Ryan Seacrest was in the Lobby as he just opened a studio for kids to record down there. Daily a massage therapist is sent in to Solstice to help her relax, and parents are also allowed to be massaged. I just finished receiving one.. not a bad perk. They take care of parents as well as children here, and that is a far cry from what we experienced in Denver.

 My team of doctors are focused and caring, and they run in two week intervals, so you don't end up with a different doctor every day. I can see why they are rated so highly, even with just being here a few days.

They treat the mind, body, and spirit here and want to begin working on getting Solstice back to enjoying life. They stated that it's very possible that we could be here for months, depending on what happens. I've been living in the hospital for close to three months already, so I'm getting very used to the concept. It's amazing to finally feel like we are getting somewhere, that these people are actually going to help us. They have the knowledge to do so, and appear to really care, it's like a nice deep breath of clean mountain air after being suffocated with bullshit for so long.

Thank you to everyone who has helped so far, we still have a long way to go, but with your love and prayers, I think we are going to come out on the other side....

Special Thanks to Elli Roustom and Chef Adam for putting together the pulled pork fundraiser. Vail Valley friends, please attend!

or if you can't attend, you may donate online by clicking the link below: https://www.giveforward.com/fundraiser/03g3/help-solstice-get-to-cincinnati

Fly Frontier?

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So, we've changed out mind about our trip. I am so worried about flying due to increased pressure and elevation on Solstice's brain, because I know her brain swells. Though it is not a normal symptom of HAE, it has been found in very rare cases. She loses her vision, she has little mini seizures. So I've been scared to death to fly her, but at the same time the concept of driving through Kansas is just as scary. So, we are going to dose her up with Cinryze and Firzyr a couple of hours prior to the flight, this should control her swelling and avoid an attack while on the plane. Cross your fingers the plan works, because it's the best one we've had so far. We found a flight for tmr night on Frontier, I'm going to wait an hour or so, and see if any of you fine folks happen to have some discount abilities, as the tix are almost 600 for just Solstice and I Scott Archeletta of Arch Electric picked up the tab for these two flights, and Greg's parents called right after speaking with Scott (I didn't want to ask him for more than we actually needed) and offered to buy tickets too, so I asked them to buy Greg's.. which is really good, because I do a lot better with him around. He calms me, puts things in perspective. My wild ideas aren't always the best way. I'm a lucky girl, to find someone who loves Solstice and I so much! I will write more soon! Thanks for your support!! Amanda

Something's not quite right....

I woke up today filled with a weird feeling that something was headed my way.  I got so nervous about it, I immediately threw up.  My stomach must have known as well, because every single item I ate last night was purged, not that I eat much these days anyhow......

You see, this pile of horrible stuff that's been hitting us like we're a moving target, every single time I got this feeling... sometimes two days before, sometimes 3 weeks.  But this one is big, of that I am certain.  After spending eight days in the hospital, we went home for 3, had a trip to my favorite ER at Boulder Community Hospital, and then back for inpatient at Rocky Mountain Children's Hospital since Thursday.

Solstice has been saying for days that she feels as though she is going to die.  Not that she wants to die, but that she just has a feeling about it.  When she says this my heart breaks, as I am not all that certain she won't... unless I can get her to a specialist.  This disease has a 33% death rate.

I've not stopped trying to get her help.  I have called everyone I know, asking for information.  I've pulled favors in Austria that got me an email address of a famous HAE researcher, I've begged my friends and family for money.  I call places all day long, trying to find someone to help her.  Greg too has tirelessly fought to try to find an organization that can help us.  She can't fly, she must be in a medically equipped ambulance for 17 hours.

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Solstice takes Cinryze and two other very expensive medicines Berinert and Firzyre, to stay alive. Running out of options, on Friday I begged Firzyre to help me. Earlier today, I cried and begged Cinryze to help. She desperately needs medical transport, and insurance will not pay.

We have been in the hospital for pretty much four weeks solid, except for a couple of days out.   She just gets more sick everyday,,,,and no doctor knows what to do here in Denver, because they have never even seen the disease before plus she has a super severe case.

Which is why I was grasping at straws calling the big drug companies, asking them for help while they took my monthly order with a $9000 co-pay.

You'll never guess what happened... they  declined to help... and so here I sit still in Denver with a child who's life depends on being in Cincinnati. Stuck with an insurance company that won't pay... while they walked away with 4.2 billion dollars getting rich off my child's disease.

If only I could unleash the expletives that come to mind when I think this through....

This was part of her attack earlier tonight... this one came on within minutes. These happen to her almost daily, where is my angel?
 


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Solstice's strength

I have always known Solstice to be strong, I taught her to stand up for herself, to help others in need.  During her years in Leadville she watched over the handicapped kid in her class, made sure others didn't make fun of her, or hurt her.

If someone is out of line, Solstice was always the first to speak up, the first to call others out on their thinking.  She never has gotten in trouble at school, and here at home, she only really ever got in trouble for mouthing off.  Not sure where she learned that from .. ha

I have always imagined that Solstice will grow up to be a person who made serious change in the world.  Someone you'd be proud to call a friend.  An excellent student, she has always taken school so seriously.  She has not been to school in nearly 2 months. As a ski racer her entire life, now in a wheelchair because the swelling of her legs is so intense she cannot walk.  It's a hard pill to swallow for her, and for us.  We desperately need to find a specialist, but none are to be found in our area.

We have spent everything on co-pays and specialists.  Our savings is gone and we no  longer have the ability to take her to the places she needs to go for help.  As our knowledge of the disease grows, we are finding our mistakes along the way.  We are asking for help.  We have an online fundraiser going, but it has proven to not quite make the amounts required, since out of state care will not allow the use of medicaid.  I had to quit my job in order to qualify to make sure she had the care she needed, as our primary insurance company keeps denying us.

After eight days in the hospital, yesterday for the first time she asked to do something.  She didn't even turn on the television during her stay in the hospital, too sick to even watch tv is a rough state. We went to the Denver Museum of Nature and Science.  She had a lot of fun, but was worn to bits by the time she got home and slept nearly 20 hours. She's awake now, and her spirits are lifted a bit by our outing, thankfully.

So, if you're reading this after the fundraiser is complete, and you'd be kind enough to donate to her cause, please email me for our address.  I have been humbled by this situation, and I no longer am bothered by asking for help.  We need your help, if you're willing to give it... I will be forever grateful.

Amanda

Halloween at the Hospital

Happy Halloween everybody!  Today is both very sad and very happy for us.

Halloween being my favorite holiday, Solstice is used to celebrating in style, so there is a sadness with having to be in this place on a day that I celebrate with more pow than any other.

However, three very exciting things happened today!  (Well, two so far, one is on it's way.) We got out of bed for the first time since our arrival seven days ago, and we broke the law and got all sneaky with bringing Solstice's puppy into Denver, being a pitbull, Samoah is an illegal.  Risky, but worth the smile for sure.

In less than our hour our dear friends Chris, Melissa, and Chelsea will be pulling into Denver from South Dakota.   I've known Melissa since we were in 7th grade, when she threatened to beat me up, and I cried and told my mommy.
My mommy called her mommy, and her punishment was that she was forced to spend everyday after school with me for an entire month.  We ended up friends for life, but I honestly had no idea until just a few years ago when she told me.  Forced to be my friend in 7th grade, and now all these years later she is still on my favorites list.

Neither Solstice or I can wait for their arrival, as they are so fun and crack bad jokes constantly.  They treat her like a person, instead of a kid.  You know those people that give just as much respect and attention to a child as they do adults.  They are a rare breed, and with having a sick child that rarely receives visitors, as we are still new to the area, and she only had a couple of friends, I am starting to realize what a powerful and precious gift this quality is.  

Solstice hasn't been to school in over two months.  She hasn't gone more than three days without at least an emergency room visit. Our lives have changed drastically, and there is not much time to feel sorry for ourselves.

Greg and I wake up every day and spend all day on the phone, on the computer trying to find someone to help her.  One of the doctors have even admitted they are just keeping her alive here, that they can't help her.  It's a hard realization, especially when insurance is pushing to get us out and she is so weak she cannot yet walk.  We may be released as early as tomorrow.  Stupid insurance.  Of course I want to go home, but she is so sick it's scary.

Greg figured out one major issue, that may save her life.  The magic medicine, the stuff that is so important, that keeps her alive.  She has every nasty side effect and since her disease acts up so often, and she was having so many doses, the side effects essentially kicked her ass.  It's not the medicine you would normally give a kid with her type of disease, but since I don't have any specialist, things like this happen.

She didn't eat without throwing up for five days.  They put a feeding tube in, but she puked it up a few hours later, they tried again the next day, but tried three times and gave up, after she started coughing up blood.

I was lucky enough to talk to a woman who is doing a documentary on HAE, and she said when her body gets that messed up, that the only things she can eat are cantaloupe, apples, and fresh coconut.   It worked, and as soon as we switched her medication from Berinert to Firazyr, she started to perk up a bit.  Going and doing crafts today for an hour wore her to bits, but she was able to do it... and hopefully we are out of the scary for now.

Thank you for reading, go cause some trouble for me, and have a great halloween.  

Feeding Tubes...

Today Solstice got a feeding tube, as she hasn't been well enough to sit up or consume food in over five days.

She lost her vision for a while yesterday, feeling in one of her legs.  Neuro came up, looked at  her records and didn't even look at her before they decided it was a pych issue.  It's happened before, and I've had her tested at an ophthalmologist.   He is sure it is not in her eyes, and the family doctor believes it to be related to the HAE.

Though it is very rare, I found a study yesterday from Switzerland that showed that in very rare cases HAE sufferers can have swelling in the head, causing paralysis, seizures, and stroke.  I guess my doctor spoke with my allergist and she assured her that it is not a norm for HAE, so they refuse to help.

I called the Neurologist this morning myself, and said it has to come from the doctor.

So I went to the family consult room and cried for an hour, it calmed me down a bit, but I still asked Greg to meet with the doctor, as I know if I do, I'll go off on her.  I'm not holding it together so well these days.

Greg just returned, from the conference with the doctor, he stated that it felt as though they were just keeping her alive.  She said yes, you need to be somewhere else and seemed surprised that no one is advocating for us.  She is on the case, and hopefully the social worker will find a way for us to get somewhere that can help her.  I hope that someone can help us.

Amanda Jensen

Cincinnati, our new dream....

It's been such a long road, I sometimes look back at life just a few months ago, hanging with Iguchi and Marcus, starting the garden, our new life in Broomfield. The excitement of finally getting to work every day with my best friend Greg, and laughing, just laughing all the time.

 Now, laughter is hard to come by. I try to keep my spirits up for this little girl, but anyone that knows me, knows exactly how moody I can be. I've learned that leaving the hospital once a day, and taking a long bath does wonders for my state of mind. Solstice goes from being happy and upbeat to crying about how certain she is she is going to die.

She had a recent trauma that has added to the mental state, something so horrible that I can't even allow myself to write it down, nor would I without her permission. But someone is in Jail, and we are now dealing not only with a very very sick child, but one that is emotionally wrung. She wakes up in night terrors screaming, and the anti anxiety meds they are giving her are making her a bit crazy. She goes from asking them to reduce meds to screaming HELP, HELP, I'm DYING. As of now, I have asked them to remove them from her med list. That kid can hit the nurse button so quick, I don't even see it happen.

 We are St. Lukes/ Rocky Mountain Children's Hospital currently, and I feel much more comfortable here. I always wondered at Children's why they didn't have a place for parents to get away, a room where we could chill, and chat with one another, try to keep each other sane. I think I know the answer, they wanted us separated so we couldn't compare notes. This place has such a room, where parents can go to take a deep breath, talk with other adults, know they aren't the only ones trapped in this horrible place.

 I will let you know that we were found not-guilty or as they call it "unfounded" with Social Services, I'm certain that all of your words helped. Thank you so much for that.

 I have been told by many doctors now that my only option is to take her out of state and find a specialist. Her case is so severe, and since the only specialist the in the area, Dr. Charles Kirpatrick picks his patients, and no matter how hard I've tried... I haven't been able to get her into him. Our only option is to head out of state to either John Hopkins or a Dr in Cincinnati that was referred to me by Dr. Borg, from Germany who is considered the Godfather of HAE. I need your help. I started a fundraiser just a day or so ago. I know many of my friends are not in a financial position to help, and that's okay, I understand. But if you can afford to give something, please do. I'm not being dramatic when I say it might mean the difference between her life and death.

Hoping for more

It's been a while since I've written.  We've been to Boulder Community Hospital nearly everyday, and I am so happy with this hospital.  We were lucky enough to get this rockstar ER doc named Dr. Todd Dorfman.  It was hard to control myself from kissing him.  Not only did he look though all the studies I've gathered, but actually got on the phone with the head Dr. of HAE association to discuss a few things.  It was like a dream, a really good dream.

I hope it's okay, but I asked you all to say what you think of my parenting skills and I was overwhelmed with the fact that you took the time to do this for me.  I sent it off to social services this afternoon.  Interestingly enough Greg met a woman today that took her kiddo out of Children's Hospital, and she too was "blessed" with a visit from Social Services.  How can they do that? Because I don't believe they are helping her, and I chose a different hospital, they call the authorities.  Bullies... that's what they are.

I am in touch with a Dr. in Ohio, so there may be a road trip on the horizon soon.  They say Solstice's case is the rarest and worst form, and also that it's A-typical.  We can't go a day without a $10,000 treatment.  It's so hard to see kids playing in their front yards, or look at facebook and see everyone having fun.  I feel like I'm in a bubble, looking out.

My allergist at Denver Allergy and Asthma, Dr. Andrews is such a saint. I LOVE this woman.  If you ever need an allergist, she is the one you want.  She has had to go through so much to get approval for the magic medicine.  I'm uncertain if this is the best choice, because although it saves her from asphyxiation.  It does not help her tummy or her knee, she's been limping for 2 months. We are trying now to get approval for another drug, hopefully it works.

So, I wanted to share your responses with the world, as they meant so much to me.  If you prefer I do not do so, write me a note and I'll remove yours.  Thank you for the support.

OMG Amanda!! Wow! I CAN NOT believe the mess you are dealing with! I absolutely want to add my two cents, and since our children have known each other since preschool (age 2 1/2) I think I know you pretty well! You have always been an OUTSTANDING parent! You have done the absolute best job you possibly could with her. She has turned out to be a wonderful young woman because of you. She has ALWAYS been your priority in life, and I've never know it to be any different. We are all very saddened by the situation you are all in now, and especially because Solstice is so sick. The world deserves to hear her beautiful voice, so I truly hope there is real genuine loving help on the horizon for you. You are the only person in the world who knows Solstice and what she needs. You keep doing a FANTASTIC job of taking care of her. Please please let me know if there is any way I can help you!! Loves to all of you guys! Give her a giant hug from me and Chance!

I have known Greg for about seven years and Amanda, once she started dating Greg, for about five years. They are the kind of friends to my husband and I that are like family. I have never doubted the parenting skills of either of them. I have gotten to know Solstice through spending time with Greg and Amanda, and by substitute teaching at Solstice's school. She is an amazing young woman, and that is proof to me of Amanda's ability as a mother. Amanda and Greg would do anything to ensure Solstice's well-being and support her in all that she does.

After many bouts with inadequate medical care myself at many different facilities throughout this country, and after watching Amanda and Greg with Solstice for many years, I completely agree with Amanda and Greg's right to ask questions, and make choices based on the care or lack of they are seeing Solstice is receiving. I agree with Amanda's frustrations and lack of general care many facilities exhibit. It is a requirement of any patient or caregiver to ask questions and fight to receive answers and Amanda's voice will always be the best caregiver her daughter can have. It is not for the state to judge them by removing her from a hospital for choosing to receive or find better care elsewhere. Amanda and Greg are and will forever do everything in their power to keep Solstice growing safe and strong, independent and pain free young woman that Solstice deserves to be.

I have known Amanda for many, many years and my husband and I were blessed enough to be present when Solstice was born. I have never seen Amanda make any decision that was not in the best interest of her child, even when it was difficult. Being a parent means (among other things) being their voice, fighting for them when they can't, and loving them without condition. She's been doing all of these things for Solstice while providing her with more love than you can imagine. When it comes to kids, sometimes a mother just knows, in the pit of her stomach, she knows. That should never be discounted or ignored by a doctor.

Amanda,
I have never seen any behavior out of you other than that which maximizes the care, safety and well being of Solstice as long as I can remember. The entire time I have known you, I know that Solstice has always been in the forefront of you thoughts.


I don't know any other way to say it. You have always been an amazing mom in every sense from everything I have seen. You have once again proved it here with the antics and shenanigans of the Children's Hospital. Continue to look after Solstice as you always have. As long as you are on watch, she is in the best hands possible!

Amanda was doing what she thought was best for her child. Any parent would do the same. Combined this with the resend diagnosis of a rare disability, and she acted as I would have. Case closed!

I've know Amanda and Greg for over two years and never ever would I question them as parents! They do nothing but sacrifice in order to provide what's best for Solstice. I think the best way to demonstrate is by example.. As Solstice went through difficulties with her eating disorder, I watched Amanda conduct countless research, make calls and take Solstice to appointments with different professionals in order to get her the specialized care that she needed. They completely changed the way they eat to feed Solstice nothing but the healthiest foods to help with her body imagine. Amanda researched camps for Solstice and sent her to a few different programs that interested her daughter. Even though money was tight, it didn't stop them from finding Solstice programs that she could enjoy. Additionally they started bringing her to a gym and other athletic activities to help her change the way she sees her body and get her mind on other things. Because they are amazing parents who sacrifice because of the love for their child. They support her music and anything else she loves to do. Looking at the current situation with Soltice's hereditary angiodema they have once again done everything they can to find answers and get Solstice the care that she needs.

Anyone Amanda and Greg knows would gladly write this letter. It is absurd that their parenting skills would EVER be questioned. They are truly some of the most caring parents I know and I mean that!

You are a wonderful mother, Amanda! I cant even begin to imagine what you, Solstice and Greg are going through. Im so sorry!

Amanda, this is so heart wrenching to read. While I do not know Greg, in my mind you have always been an inspirational mother to Solstice. I remember meeting her, on several occasions, always such a terrific kid. The fact that you uprooted your family, to give her the opportunity to spread her wings in a better school district, I always admired. When I first began reading your stories about her disease, I was really touched by your drive to figure out how to help her. This set-back is heart wrenching. I hope that your social services worker will see through everything to keep you all together. Please let me know if I can help in any way.

I have known Amanda my whole life. I am a LCSW and a DrPH. She is a caring loving and attentive mother. My own child has a rare life threatening disorder C-DIF type 027, I have been scrutinized by hospitals and schools. My heart goes out to Amanda. She knows her child best and a mothers gut is never wrong. I would vouch for her and her parenting in any courtroom.

I am writing in regards to the ability of Amanda as a parent , which has put into question. I have known Amanda for 26 years When her daughter Solstice was born it became Amanda's mission to be the best parent she could be . Amanda has always put her daughter first in her life . The fact that someone would ever question that is mind blowing , if anything a study should be made on how to be a parent and Amanda should be the study . We need more parents like her. The love she has for her daughter is a sight to be seen . Amanda is a patient, kind,loving mother. Amanda would give her life before ever putting her daughter in harms way. The decisions she makes on behalf of Solstice are not made lightly. She has spent sleepless hours trying to find the answers and thoroughly investigating to the best of her ability about this disease. Amanda is not just Solstice's mother she is her protector as she has always been and always will be.

Amanda. It has been years since we last spoke and I'm not sure if you remember me but I remember you very well. We knew each other when we lived in Sioux Falls, you lived I'm the white house on the corner of Minnesota. The last time I saw you was when you were pregnant so I can not testify what kind of a mother you have been but I can speak to what kind of person you were when I knew you. You were always a carrying and compassionate person. I never saw our heard you do anything to make me think badly of you. I also remember how good you were with my son. He was two when we met and even though you didn't know us that well you came to his third birthday party. In fact, I remember correctly you gave him toy car set that came with a mat that was a town to 'drive' the cars around on and had all the little stop signs and road construction pieces. I remember because it was his favorite gift that year. He is eighteen now and even though he doesn't play with it any more, he still has it.


OH MY GAWD. I can't tell you how many times my father went back and forth with people at Sioux Valley Hospital. You are an amazing mother and second to none as far as being the advocate for your daughter. You are perfectly within your rights to take your daughter to a different hospital to seek better care if you feel that a certain place isn't doing the job. I know someone who's wife was quite literally on her death bed (from Cystic fibrosis) and the team at the hospital she was at refused to transplant her lungs. They were giving her dangerous meds and even got her addicted to Morphine. She actually went through withdrawal at the hospital. Her husband had been in contact with other facilities that said they WOULD transplant her, he just needed to get her there. He literally scooped her up and walked out the doors with her. The nurses and such were yelling at him that they were leaving AMA, that he was killing her, and that they were going to sue him and blah blah blah. His wife was transplanted and is still living and thriving today because of the decision he made for her. You did EXACTLY what any GOOD parent in your situation would have done, and you have something for your child that they DON'T have: a mother's instinct. Like I said before, my mom had it when she kept getting told that I only had allergies, just like you had it when you could feel there was something wrong. You HAVE to listen to that part of your mind that tells you that things are "off". For as long as you three have been dealing with this, you have made a serious effort to educate yourself about the condition and the medications involved. You have been proactive in seeking help and advice where other parents would just take the doctors' word as gospel. Doctors are people and people are NOT infallible. They make mistakes, and they make poor judgement calls. I have experienced this first-hand and I'm glad you are the momma that you are. Solstice is lucky to have you in her corner, Momma Bear. ;)

I love you all!  Thank you for all you do!  

Amanda 

The get away, police, and even social services

Gawd, I love that kid.  Solstice has been in Children's Hospital about a week.  She was flighted for life there Tuesday.  We recieved a much better doctor, Dr. K. Windmore, one that seemed to care at least.  She provided Solstice with the drugs required to get better.  She looks great right now, and though she is in a lot of pain, she's happy to be home.

Did we get released from hospital?  Nope I, and my partner in non-crime Greg, broke her out late last night. You see the hospital decided that instead of administering the drug at the beginning of an attack, they'd like to wait until it hits her airway. Since the magic medicine, otherwise known at Berinert, works best the faster it is administered, and takes a minimum of 30 minutes to work I felt very deeply they were risking my kiddos life.

On Thursday we tried a new drug called tramadol, probably around eight pm or so,  it's a non-narcotic pain killer.  As we were hoping to find a non-narcotic option to Solstice's constant pain.  This immediately started an attack.  She was given the magic medicine and and I was told we would re-evaluate at midnight to see if she needed another dose.  It's common to wait 2 hours to how effective the stuff is.

Solstice's blood, found on the counter of
ER  hours after it was taken for the second
time this week.  

At 10:30 pm it was obvious that Solstice needed an additional dose and I asked the nurses to contact the doctor.  They said they'd ask, like they do, masters of distraction.  Somewhere around 12:30 or 1 am the doctor called to tell me that they didn't have another dose, and a delivery would be present in the morning.  I being the mama bear I raised my voice to the doctor and explained that she needed to have a dose couried in immediatley or I would take Solstice to another hospital that had the magic medicine.  This later was reported that I threatened her in some way.  I assure you, I did not, and even Greg admits though I was bitchy, and even I admit I lost it,  I certainly didn't make any threats.

Meanwhile Solstice is screaming in pain, again, in the hospital where they are suppose to have the means to stop it.  She's pissed and screaming, and these two nurses are just awesome, helping her, making her feel better. There came a time where I just couldn't take it any longer and I cried in the hallway for about an hour while two security guards stood over me.  Admittedly, I couldn't help but stick my tounge out and blow rasberrries at them once or twice through my tears.

But only because I had been cornered in a bathroom in the admin wing for crying the day prior. I'm a cryer, it's the way I get all the icky energy out.  That time there were four or five surrounding the womens single bathroom.  I had to text Greg to come rescue me.  Seriously, this is a children's hospital.  I can't be the only crier in the place.  Can't they give us a nice place to fling our emotions out, so we don't show it to our kids?  They simply are not very family friendly there.  So, to entertain myself I threw out a couple of raspberries, I couldn't help myself.  It made me smile a little and I think they might have to.

At 2 am they started the process of getting her the drug, and by 3:30 am she was in the clear and falling asleep.  I awoke the next morning to a lecture about my behavior and I responded with a strong dislike that I was lied to, and that I was uncertain I could trust them with my child.  Solstice asked that Greg and I leave, that she needed space.  She's 14, and constantly stuck with her parents... I get it, but it still broke my heart.

It was a realization of sorts and decided that since I had spent nearly every hour of the last 3 months caring for my child, night and day, helping her to the bathroom, feeding her every meal, holding her hand through thousands of  pain episodes, I was close to the edge and needed to get away.  We just moved here, I know no one.  No one has offered to stay with Solstice for an evening or a day so we can have a minute away.  I know myself well enough to know that I needed this time, and with her stable in the hospital I actually could.
I drove 100 miles to my friend Elli in Avon, oh Elli how I love you, cried, drank some wine, and gave her some information to send to her sister in Austria.  I received a reply and emailed a German doctor that specializes in this disease this morning. I don't know where it will lead, but I've learned to ask, ask, and ask some more... and eventually if I ask enough, something comes back.

I came back from Vail and spent the first night out with  my husband in probably close to 7 months.  We bought some Ani Difranco tickets off the street (the show was sold out) and had a great evening.

The next morning Solstice was ready to see us.  I had several appointments, one of which to get some anti anxiety meds, because talking in circles with interns tends to make me itch my eyeball with my middle finger,a lot.  I have a really hard time being polite when my child is in pain and the doctors are pretending to "go get something" or "go talk to someone"  I believe in action, and before I could act, I needed to get my reactions under control.

We arrived at the hospital last night around 6:30 pm.  We had packed up to be there through Thursday.   I couldn't shake the feeling that something was really wrong, and neither could Greg.  Solstice looked great, sang songs and smiled.  It took me a while, I was trying to feel the energy, it was hard to ascertain what was bothing me.  As I stared out the window overlooking the lights of Denver I suddenly realized that we shouldn't be here.

Solstice's arms today after being in Children's hospital,
What in the world did they do to her?  The IV sites are infected. 

The weekend doctor had been in to see Solstice once, and told her that they were going to medically release her on Thursday, but that they may send her to a pych ward.  You see, a day prior she had told her nurse that she was having intrusive thoughts.  Not that she wanted to hurt herself, just that she was sad.  So, being the hospital they put a "babysitter in with her for the evening".  The text I received that morning said "Mommy, I need you.  They put a sitter in here because I was sad and I couldn't sleep because she was watching scary movies and talking all night and now I'm on 24 hour watch and I miss you and I need you to come and watch me so she leaves.  I'm scared and I can't deal with her.  She's mean, and she won't let me watch scooby doo, she's making me watch the news on MY tv."

Jason Zamkoff - Mr. threaten Pych ward

Nice, first the doctor tells her they are going to commit her, then they set her up with a woman who lacks empathy of any sort.  Seems perfectly legit for a child who has just been diagnosed with a painful and possibly terminal disease right?

Now that both of her parents were in the room, I asked that the babysitter be removed, that we could keep her safe, they refused.  Instead they placed her outside the door with the blinds open, and when she bathed, they made her keep the door open.  I watched all this, not understanding what was going on in the night doctors head.

So, I say I'd like very much to discharge Solstice tonight.  Taken aback, they question why and Greg asks that we move into another room to discuss, as not to upset Solstice.  I think there were five of them.  I took the comfty the seat and walked them through all the reasons I did not believe they were providing my child good care, mostly the bit about the decision to withold the magic medicine, unless there is throat swelling, even though the manufacturer and my own eyes have witnessed that the faster you give it, the better it works. The number of times they had not read the inactive ingredients on meds, and had caused attacks.  The fact that they wouldn't release the babysitter even though we were present.  Additionally, they put a fentenyl patch back on her, even though we have a suspicion that it had some inactive ingredients that were causing attacks.

It ended with us shaking hands and the head doctor asking we wait ten minutes for some silly reason.  My husband looks at me and says, somethings not right here, lets move.  We pack up quickly, we make to the front door, and the security gaurd says "You are okay to leave right?  Someone called down and said that someone was leaving against medical advice."  I say, oh no, that's us and hand her the paper I signed that says I am leaving against medical attention, and will not hold the hospital responsible for anything that happens.  I just happened to add "but will hold the hospital responsible for things that happened during our stay."  They love that by the way. I tell Greg and Solstice to head to the car, and as she is listening to the report of us I run up the stairs.  We pack up our vehicle and high tail it out of the parking garage, just as the security car is pulling up to block us in.

We make it home, watching the rear mirror the whole way, feeling all MacGyver like. Within 10 minutes of arriving home we have three police at our door.   We explain, Solstice comes out and says that she feels much safer at home than at the hospital.  They inform us we are within our rights, an shake our hands and leave.

I take Solstice to the doctor this morning, get pain medication and the progesterone they didn't return to me at the hospital a(which they did not give to her at exactly 8:30, and could be causing an attack right now actually) and shortly later a knock on the door brings Social Services.  We tell our story again, and she too seems to understand that we are just trying to protect our child.

We have a plan afterall.  The hospital was not going to give her another dose of berinert, our next dose is set at the allergist tomorrow, where they will teach us to self inject, so we don't have to depend on the hospitals.

I've contacted John Hopkins and the doctor in Germany attempting to find a specialist to treat my child.

I've secured pain medication for her, so she can at least feel a little better as the swelling slowly subsides in her tummy. As well as the medication we are hoping will allevate the number of attacks, the one I researched and discussed with my allergist.  Children's never once attempted to help me with this.

And, I've found four vials of the magic medicine at Boulder Community Hospital just in case she attacks today.

So, I know I've been asking a lot lately but .... if you wouldn't mind, if you know me well enough, could you please take a moment to write your thoughs about the kind of parent I am, so I can foward this to my social services case worker.  I can't believe I have a social services case worker.... though I actually liked her, she was professsional and I sensed that she understood how much we love that child.  Since Solstice was born I have done everything I know to do in order to be a good parent, and to raise a good child. Sigh.... good ole 'merica

Click here if you'd be kind enough to leave a note about our parenting skills, I'd just love to be able to email it to the case worker before the review next Tuesday.  Pretty Please?

Even though it's completely legal to remove your child from a facility you do not believe to be helping her, both the police and the social worker said so, those assholes sure know how to play a mean game of war and I'd prefer to come to the battle prepared..

Thanks for reading.  Here's an original song by Solstice.  Hope you enjoy it as much as I do.

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.

Always an over acheiver....

Sorry I haven't wrote in a while, I took a day off from the world to watch Sister Wives on Netflix. Being newly moved in an area I don't know many people, being caretaker as Greg is trying to hold together the new business, it's a loney place sometimes. I could use me a sister wife.

Tuesday was quite the day, even now after days, my mind is still processing. I feel quite accutely that I am missing a huge piece of the puzzle... can't quite put my finger on it. I hate that feeling.

We went to our appointment put in place by Children's Hospital at Jewish Health. Here I met with a Dr. Spahn and his fellow, who explained that they believe that Solstice has type 3, which is the most rare form of the disease.

That kid, always an over acheiver..

I really liked Dr. Spahn, or perhaps I loved that he knew something. He seems to be a natural teacher, able to break thing down and explain them easily.. and he had a plan. Thats all I've wanted for a while, someone to take the wheel. I feel like because this is so rare, and the research is so limited, I am the one driving. I don't feel comfortable driving a vehicle of this size, especially when my kiddo is strapped screaming and crying to the back hatch.

Luckily, from what I researched and from what they said, Jewish National Health here in Denver, is on the forefront of genetic testing for the diagnosis of this disease. This means that all those messed up blood tests are a thing of the past, and they actually can pinpoint the genetic material in the blood that causes the disorder. This has never been possible before. I can't imagine what is was like ten years ago to get this diagnosis. It's only in the last 5 years that there has been good treatment options. Generations before suffered, with no real relief. So, though the diagnosis is sad, I at least feel lucky I can help my child.

Since she is probably Type 3, he showed me a study conducted in Germany that showed eight patients that took progesterone (a female hormone) and had no attacks during that time. I didn't receive a real answer regarding side effects of progesterone, or if the other drugs created to ward off attacks work on type 3. (I now now there are quite a few treatment options YES!) But at least he was honest and said he didn't know the answer to my questions. I like that in a doctor. I'd like it better if he said "Ill find out", but .. hey I'm learning to not have as many expectations.

 I've always been a get it done kind of person, and I am aware that I am no different than every other parent trapped in this system... but I also won't take no when it comes to my kiddo. My job is to make certain she gets the best care possible, and if I am disappointed I will speak out. But I also know to limit my expectations, and this is my new lifestyle and it can't be tied up with a bow just because I say so.  As hard as it is... it's just not the way life works.  You don't have to be a realist to know that.

Children's hospital has shown me over the course of the last days that I should not judge that one doctor for the care they provide. They have stocked the magic medicine at the Denver North location, so starting Tuesday we can go there if needed, just 15 minutes away. For now we know where two doses are nearby. Greg and I feared Solstice was starting an attack last night, and spent over an hour on the phone trying to find Berinert at the local ER's. After call number seven we found it. It's scary to think that the thing that will save my child is so hard to come by.

The insurance company, Aetna, so far as I know has continued to deny the claim to get the magic medicine, but Dr. Andrews is keeping on it, I love you lady!   Regardless, she scheduled an appointment for Accredo to come to her office on the 10th of this month in order to teach us how I to infuse Solstice in the case of an attack, it will be so nice not to have to visit the hospital.

If they are denying the medicine that she needs to survive an attack, I wonder what will happen when we try to get the medication to keep them at bay.  It seems that what works for one person doesn't work for another.  It's going to be a long road of trial and error to find something that decreases the attacks, so she can live with less pain, and attend school normally.  Follow her dreams, be the amazing person she is meant to be.  She's always been so powerful, someone you're lucky to know, I guess that was the natural way of life preparing her for what was on her plate.  I'm so proud of her.  Even now, her positive attitude is radiant.

 I wake up everyday thinking it must all be in my head. We're known for our drama afterall, maybe we just made it all up. Maybe she'll never have another attack. Maybe.. it will all just go away. This is where uncertaintly turns to hope... and hope is good stuff.

Please take a moment to watch the video our dear friend Chelsea Kappenman made for Solstice, and share it too!

Please help.....

I need your help with my current predicament.  

You see, in order for Solstice to have limited pain (she will never be without again.) She needs twice weekly injections of a very expensive drug.   There is an alternative to said drug, which is male hormones.  Yes, the kind that will de-womanize her.  Exactly the type a budding transgenger might buy on the street in order to reverse the effects of puberty. The ones that will change the voice she has worked so long and hard to train. Remove chemicals that make her a woman, this is the insurance company’s suggestion of how I am to treat my 14 year old daughter.

The reason of course, is money.  The cost of the drug that allows her to be the beautiful woman she is costs $300,000 a year.  The hormones, well you don’t need the numbers to do the math. 

Now add on the fact that we don’t have an OFFICAL DIAGNOSES.  The reason the disease is so hard to diagnose is that sometimes it shows up, and sometimes it doesn’t.  It requires a very special test that has to be taken from the arm, spun and frozen within minutes and then sent out.  If she has had the magic medicine within 7 days, the test will show a false negative.  She hasn’t gone three days without the medicine in weeks.

Number of times test taken – 3 Number of times test messed up – 3

Now, every doctor that has had even a smudge of knowledge about this disease knows Solstice has it.  One major fact, is that the only way to reverse these attacks, is a drug called Berinert , hereby known as the magic medicine. This medicine will have to be her constant companion, because even with the maintenance medicine that replaces the proteins she doesn’t make,  she will still have attacks.  Less often, but they still will happen. 

   

 Not every hospital has it, they usually have to go find it and have it couriered to us, which takes precious time.  When she has an attack, she needs to have it a.s.a.p.  Less than four hours is ideal, and every moment it’s not in her body, is longer that the attack goes on and starts to create more issues, all leading to the ultimate throat closing which will could result in death.   

A person who doesn’t have this disease, would not at all be effected positively by the magic medicine.  With Solstice, it’s night and day.  Within minutes you can see the parlor of her skin change color, and the pain contractions lesson slightly.  When she has an attack, the right side of her face swells, her intestines grow, leaving her bloated, looking as though she is eight months pregnant.  She loses her entire inner field of vision.  She starts dry heaving non-stop, but never vomiting, as the pressure pushes everything up.  And she screams.. blood curling screams from the pain.  As it hits, it does so in waves, almost like contractions.  They start at 20 seconds and are as far apart as ten minutes, but if the pain receptors are not blocked, and the magic medicine is not given very quickly they speed up and become longer, until they are basically right on top of one another.  It is the most awful thing I have ever seen.  It’s essentially watching your child be tortured, and it doesn’t end until she gets the magic.  After several days of these attacks, even with the medicine.. the pain doesn’t stop.  It’s constant, until all the swelling goes down, and even then… it will always be in the background of her life. 

Add to that, one of the triggers for this disease is medicine.  I believe it has been set off Tylenol, ibprofren, benedryl (iv), and oxycodone.  I say I think, because these are the thing that she had prior to an attack.  I am in no way qualified to figure this out.  And, avoiding the triggers is perhaps the most important focus of our daily life..  When I arrived at Children’s Hospital I had two goals that I immediately placed on the white board of vital info about my child, under the heading questions.  I then asked the same two questions to every single person that came into our room.

You see, I have found two great doctors that are rockstars and they are working on helping us.  Neither however has seen more than one case of this disease.  Furthermore the first rule of being a patient is knowing that more doctors and more opinions only provides more knowledge and more options.  So this is what I needed, while we were here, to assure my child’s health. 

1)      Access to a doctor that knows about my child’s disease to help me understand, as there is very limited information available, even to a google queen like me.

2)      Pain management, experimenting with non-narcotic options to my child’s care in a safe environment, where the magic drug is accessible. 

By day two I was told several times that they understood my questions and were working toward a solution.

On day three when I broke it down more specifically to Dr. Seltz, when I said “What about Benedryl, it’s supposed to be on the list of things that help.  But when you gave it to her last night, she had an immediate attack.  We stopped the attack with Berinert.  Can we try the Benedryl while we are in the hospital, so I know for sure that it’s safe?”  As he had assured me it couldn’t be the Benedryl, it must be coincidence.  And then he said “No, she doesn’t need it here.  If she needs it at home, try it there.”  To which I replied:  “But I don’t have access to the magic medicine, if I try it at home and she has an attack, I can’t fix her.”  His answer? Ah, but she doesn’t need it right now…. And some shit about none of us liking uncertainty. 

I do have to say, they did send in pain experts that spent serious time with us, and helped Solstice understand the importance of breathing, and educated me on their pain clinics.  They walked her though ideas to distract, discussed acupuncture, good solid material for sure.  She will have a lot of pain in her life now, and narcotics are not the answer.  But in the end, do you know what my discharge instructions say?  Vitamins.  I should give her vitamins.  No magic medicine, no pain alternatives.  Just vitamins.  

My fabulous allergist, Dr. Andrews at Denver Allergy and Asthma associates attempted to contact my doctor throughout the weekend.  He never called back.  She believed that we should not be let out of the hospital until I was trained on how to inject Solstice with the magic medicine, and give it upon release, as Solstice’s case is so serious.  She has been working diligently towards approval with the insurance company.  She has also been in contact directly with the manufacturer to obtain this for a little girl who needs it very badly. 

You see, if my doctor had taken the time to actually understand the disease, he would understand how serious this is.  We were sent on flight for life to the main hospital because her throat was in process of closing.  And he just wanted me to try the benedryl at home, you know….  

He also made two separate references of an HAE attack being the same thing as a pain receptor attack.  I don’t think he even took the time to read a Wikipedia article.

    

So, right now this is where we are at:

1)       We cannot get her the twice weekly injections that control the attacks, unless we want a son.

2)      The only way to reverse an attack is with the magic medicine. 

   

3)      We have no idea what specifically the triggers are, thus no way to avoid them.

4)      We have no way to control pain, except vitamins. 

Can you perhaps sense my frustration?  I was so scared for so long.  We have been going to emergency rooms, getting the drug during an attack, getting discharged, and then causing attacks with the drugs they give us or tell us to use to manage the pain.

We’ve known she needs to be hospitalized and watched for weeks, and finally they do… and then they don’t lift a finger towards my goals to keep my child safe.   Am I out of line to have these expectations? 

That is my child.  The one I birthed and raised mostly on my own her whole life.  My one real purpose in this world is to keep her safe and when I beg for help, no one hears me.  I’m just one crazy mama.  

Well, that’s where you come in.  Just come here and read sometimes, and tell people about this blog.  If you know anything about this disease, please contact me.  The only way I can get anyone to listen is if you first listen to me, show that you care about Solstice, and prove that one crazy mama has a voice.  

Just imagine the moment after we were told to go home with vitamins when Solstice looked at me through tear streaked eyes and said:  "I thought the hospital was going to help us, that we'd finally found someone to help me?  why won't anyone help me?"