children's hospital is the best

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Why does Sherlock say this in TSoT:

“Billy Kincaid, the Camden Garrotter, best man I ever knew. Vast contributions to charity, never disclosed. Personally managed to save three hospitals from closure and ran the best and safest children’s homes in north England. Yes, every now and again there’d be some garrotings, but stacking up the lives saved against the garrotings, on balance I’d say he…”

And then directly contradict himself by saying Culverton Smith is the most despicable man he’s ever met in TLD? Kincaid and Smith seem symbolically like exactly the same person.

Is this just another sign of EMP theory? That Culverton Smith is completely constructed? Something that indicates Sherlock’s character development? Or does it mean something else about Sherlock’s emotional state during TSoT?

Strange.

these things are possible

I had an easy-going and uneventful pregnancy. It was my first, and the nine months were uncomplicated by nausea or much discomfort. With each passing month—and each ultrasound, urine tests or prenatal screening—we were reassured that our boy was growing and thriving and healthy. The labor too was quick and without interventions—the doctors would later describe it as “unremarkable.”

He was here; our son was beautiful.

His seizures were noticed on his second day of life, but he was probably seizing from the time he took his first breath—and likely in utero.

He lived in an Isolette in our small, community hospital’s NICU. Our hopes for our son and his future (as well as our own) started to diminish as each medication failed to control his seizures and each of the myriad tests came back negative. When it became clear that his unknown condition was beyond the scope of the birth hospital, we transferred him to the best children’s hospital in the country.

Our world as we knew it was over and we entered into some bizarre reality. A reality of watching your child seize a hundred times a day; of moving away from your spouse to live in a Ronald McDonald House in an unfamiliar city; of having the hospital’s chaplain regularly visit you at your newborn’s bedside; of having been blindsided by a sick child when all of your fantasies for your future were with a healthy one you could watch grow and develop and outlive you. A reality of constantly questioning if this all happened because your fears of being a bad mother were true or because you didn’t want your child enough or because you are being punished for something. This is shock. This is trauma.

I became a shell of my former self. I was no longer a person. I existed with the help of family and friends who made me eat and drink, and reminded me to take the medication that allowed me to regain modest levels of functionality.

Everywhere and everything feels foreign when you are broken. The most-familiar places feel alien; the carpet under your feet in your own home feels like you’re walking on the soil of some other planet. Colors look different; they feel different. You find yourself lightheaded only to realize you forgot to breathe. You feel like an imposter in your own body and in your own mind. You lose touch with your sense of self; you fade away.

As our son was growing a part of me was dying. This is grief. How do you mourn someone still living? How do you grieve a life that hasn’t had the opportunity to live?

It wasn’t until the day before our son was discharged—two-and-a-half months after he was born—that we received his diagnosis. He has a de novo mutation on the SCN2a gene that causes his intractable seizures, abnormal brain function, and a brain malformation. It never could have been predicted. We don’t carry the gene mutation and it’s not something prenatal screening tests for. It’s the thing every expectant parent fears. He is the rare, the unknown, the under-researched, the misunderstood. His condition will be lifelong and he is expected to be profoundly disabled. With a guarded prognosis and conflicting emotions, we were able to take our baby home

The feelings of shock, trauma, loss and grief when receiving this kind of news about your child are real. They are forever a part of you and will change you. If you have found yourself here because you have been through something similar, know you are not alone even though you likely feel that way.

In the terrifying days after our son was born, someone told me, “Hope changes.” When it seems lost, the hope you’re able to grasp hold of—for your child, your family, and yourself—simplifies. When a part of you ceases to be, there is a unique opportunity to be reborn. You can live your life with a newer, simpler philosophy and goals for your child’s life and for your own: unconditional love; comfort and being comforted; finding shelter with family and friends. You can embrace the smallest pleasures with the greatest appreciation: knowing the healing power of good food lovingly prepared when eating was so recently a vulgar thought; the privilege of having a career you love but previously felt burdened by; being a support to someone else after you so desperately needed help from others; rebuilding nearly lost relationships with family and friends who emerged out of obscurity to help carry you in your time of need. You can be less guarded and freer with your I love yous. It is impossible to cure your child; that is the debilitating truth, but some of these things are possible. This is the mantra I tell myself every day.

Know you are entitled to every feeling. Sadness. Anger. Strength. Loss. Hope. Grief. Joy. Hate. Love. Feel them all. There is no timeline and there may never be acceptance. Know it takes courage to trust others with your emotions —and you are strong. I previously thought sharing my pain with others was too much of a burden. Now I think of it as crowd-surfing: the extra hands and hearts help lift the weight of your pain, distributing it evenly over many instead of it swallowing too few. Allow yourself to seek help—through friends, family and professionals—when you need it. Find your tribe.

Use your fear to motivate you to find happiness each day. Attempt to mend the breaks in your heart with small joys. There will be good days among the bad. There will be milestones. There will be victories. There will be hope, although altered.

We hoped to bring our son home from the hospital and watch him sleep in his nursery; tonight marks his 100th night home.

As you simplify, you may realize that your goals as a parent at their very core are unchanged. You want to provide comfort to your child. You want to respect your child and have others respect him. You want to be an advocate for your child when he cannot advocate for himself. You want to give your child every opportunity to live his best life possible. You want your child to know true and deep love. You can still be the parent you want to be. These things are possible.

Eosinophilic Esophagitis

So you’re probably wondering about why I put gibberish in the title. Well it’s not gibberish. It’s my life.

It all started when I was 13 in Grade 7, early May of 2009. I was eating dinner I distinctly remember hot dogs and fries. I had finished half my plate until I started hesitating while swallowing  and choking a bit. I had gotten annoyed and just assumed I was full. I told my mom about it and I went to bed. The next morning I awoke and went to get a glass of water. I filled the cup up and went to go chug it down and I spat it all over the floor. That’s when I knew something was wrong.

I’m sure you can imagine the next 2 months involved me losing 40 pounds and dropping down to 60lbs at 13 years old. The dangerous point of almost no return but with our luck (or so we thought) I was referred to McMasters Children’s Hospital! The second best children’s hospital in the world. We thought this was a stepping stone and it was finally time to get down to the root of the problem and figure out why I couldn’t eat or drink solids/liquids properly. WE WERE SO WRONG.

We arrived at McMaster and were told to go to the 2Q clinic. Which I soon realized was an eating disorders clinic. They told my mom I should be dead right now and it’s a miracle i’m still alive and that if I were to go to emerge they would admit me to the hospital immediately. What intense, deep words to say in front of a 13 year old little girl.

During my visits they would strip me down naked and weigh me to make sure I wasn’t holding anything to make the scale go higher. They sent me to a psychologist and made me drink 4 Ensures a day EVEN THOUGH I COULD NOT SWALLOW. I felt like I was being punished for having this unknown disease. My family started to believe the doctors and told me to “just eat”. They would yell at me out of frustration. At the time I thought I was being yelled at for them thinking I had an eating disorder but truly they didn’t know how better to react to their daughter wasting away and they can’t do anything about it.

My mom then started spending her days keeping me alive, checking in on me at night to make sure my heart hadn’t failed and feeding me as much as I could possibly ingest. This went on for years.

Fast forward 4 years later (2013) I was scheduled to see a Gastroenterologist. That year goes by and it is now 2014 and I have had this mystery disease for 5 years and counting now. We go in to see this doctor and he says “I think you have Eosinophilic Esophagitis”. I being told it’s an eating disorder, it’s all in my head, it’s allergies for 5 years and having countless procedures jump to the conclusion that he’s pulling this out of his ass.

He schedules my second endoscopy and it’s preformed a week later. The waiting game begins until I see him next for the results. Finally when it’s time to go back I go into his office expecting the usual verdict “We didn’t find anything” and he hits me with “You have Eosinophilic Esophagitis”. I’m stunned. There is an answer. There IS something wrong with me. I am not crazy. At this point I just start bawling.

Eosinophilic Esophagitis is a rare disease. It is an inflammatory disease which the walls of the esophagus become filled with Eosinphils a type of white blood cell. This buildup that occurs from foods, allergens or acid reflux can inflame or injure the esophageal tissue. This can lead to difficulty swallowing or food getting caught when you swallow. Essentially what had happened to me.

I was prescribed Prevacid for my acid reflux a Flovent inhaler for the inflammation in my esophagus and was sent on my way. I was so happy. This was it. I was going to be able to swallow again and go out to dinner with my family and be NORMAL. A part of my childhood that I missed out on. I was also wrong to assume this.

The inhaler and medication will only help the disease from getting worse. I am going to have this disease for the rest of my life. I will have to learn to live with it. Learn to get used to the fact that people will laugh when I say “I can’t swallow properly”, learn to accept that I will never be able to go out to dinner on a date because I regurgitate food, learn that this WILL NOT go away. It is apart of who I am.

I am not my disease but I do have to identify with it. I will stand to encourage EOE patients to speak out about their disease because there are people thinking they are the only ones out there. 1 in 10,000 children go unnoticed and without early treatment because this disease isn’t common. WE NEED TO SPEAK UP AND STICK TOGETHER.

After all, we are all we have. We only have each other.

youtube

Arctic Monkeys Signing AM Elephant As Part Of The Herd of Elephants in Sheffield.

The Arctic monkeys are famous for their love of their home city, and now they have become involved in the biggest mass participation art event Sheffield has ever seen - by putting their own personalised sculpture into the city centre in support of The Children’s Hospital Charity.

The AM Elephant is one of 58 large elephants which, alongside 72 small elephants, make up the herd of Sheffield. This very special project aims to raise vital funds to help keep Sheffield Children’s Hospital at the forefront of paediatric care and give children the best chance of a full and healthy life.

To support the Children’s Hospital Charity and the Herd Sheffield visit campaign.justgiving.com/charity/tchc/herdofsheffield or text HERD16 £2 to 70070

Starlight Children’s Foundation is proud to announce that actor Rupert

Grint has become an Ambassador for the charity, which grants wishes

for seriously and terminally ill children and provides entertainment in

hospitals and hospices across the UK.

Best known for his starring role as Ron Weasley in the Harry Potter series,

most recently Rupert was treading the boards in the revival of West End hit,

Mojo. During the play’s run at The Harold Pinter Theatre, Rupert was able to

attend Starlight’s annual Children’s Christmas Party at No 11 Downing Street,

which was hosted for the charity by Chancellor of the Exchequer, Rt Hon

George Osborne MP, in December last year.

During the party, Rupert helped to make the dearest wish of one of his young

fans, 9 year old Callum Wilson, come true. Callum, who comes from Falkirk,

suffers from a serious condition called neurofibromatosis, which causes

tumours to grow along his nerves. As a result of his illness, Callum has to

spend lots of time in hospital but his love of Harry Potter and his favourite

character, Ron Weasley, helps to cheer him up during the long months of

treatment.

Meeting Rupert was truly a dream come true for Callum. The actor made sure

that he had come prepared for the special meeting with Callum, bringing

chocolate frogs, a broomstick, Gryffindor robes and mounds of Bertie Bott’ s

Every Flavour Beans for the brave Harry Potter fan! After spending some

time with Callum chatting about Harry Potter, Rupert then met some of the

other young guests at the party and their families.

This was not the first wish that Rupert has granted for Starlight and he hopes

that, in his role as Ambassador, he will be able to do plenty more to help the

charity.

Rupert commented, “It was a great pleasure to help Starlight grant

Callum’s wish before Christmas and I really look forward to doing more

to support this wonderful charity. I have seen first hand just how much

of an impact a Starlight Wish can have on a seriously ill child – it really

makes a huge difference to them and their family – so I am delighted to

become a Starlight Ambassador.”

Neil Swan, Chief Executive of Starlight Children’s Foundation, added, ”We

are thrilled to welcome Rupert on board as an Ambassador. With his

experience of Starlight’s work, popularity with young children and

families, great sense of fun and charm, Rupert is perfect for Starlight

and we are very excited about working with him.”

$100,000 to Cincinnati Children’s Hospital!

Thank you guys so much for all the support during Best Fiends’ Race Against Slime 2!!! I wanted to clear up the way donations worked. $50,000 originally went to first place, but since we reached 100,000,000 slugs eliminated Ellen DeGeneres doubled the total prize pool, taking first place to $100,000. Beating level 23 holiday made it so Best Fiends doubled our teams slug count helping us stay in first place. Sorry about the confusion and my misunderstanding everyone. Phenomenal job though guys!!! :D

I’m 2 days from viability. I’m in a place that would save him if he were born now (close to the best children’s hospital in Australia)
I thought this feeling would be euphoric. But I just feel sad. I don’t really know why.
I guess I’ll feel better when I’m at 28 weeks when he has a good chance of survival.
I always had in my head 24 weeks was a huge goal and would be amazing to achieve but really a 50/50 chance of survival with a high chance of disability is not what I want.
So yes it’s a goal but it’s also sort of the beginning of the goal.
From Friday he has a chance. Every day after Friday he has an even better chance.
I hope we don’t meet him for at least another 10 weeks. 💗💗💗

So, Thursday night at the Tourette’s Syndrome fundraiser, the full beautiful beard was happening.  Saturday morning at the Children’s Hospital, we’ve got what would best be described as scruff.

I’ve chosen to believe this is what happened: He gets up today, and he’s like “Gotta get in Cap mode for the kids” and he uses a trimmer to get rid of the beard, and JUST when he’s about to go in with the razor he tells himself “well, let’s not get carried away.” ;)