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
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