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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