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!