A Long Overdue Update!

Well, we certainly have not been good bloggers lately...it reflects on how hectic things have been here!  We have had a lot going on since we last posted so I'll just start at the beginning.

The HopeKids 5K was amazing!  We tied with another team for raising the most money for HopeKids - over $5000 - it was so touching and we got to meet the other team that raised money - their little boy Daniel has a horrible form of cancer and the odds are not in his favor. 

 (Lizzie with my brother at the HopeKids event)

He is the same age as Lizzie and it was both heartbreaking and heartwarming to hear their story and meet little Daniel.  We are so grateful for all the friends and family who helped us raise that much money for such a worthy cause...our original goal was to only raise $1000, so we were absolutely blown away by the generosity of others.

(Lizzie and her new friend Daniel)

(Team Tough Huff with Team Daniel)

Lizzie has had a really up and down month.  We got the go ahead to start her on human growth hormone and we were so excited because we have heard good things about how the hormone helps these kids grow taller, and helps with weight management, organ growth and many other vital functions.  So we start it and she immediately gets very, very ill with vomiting and other symptoms.  We continued to give it to her for about a week b/c the doctors told us it could not be the growth hormone causing this reaction, but our gut feeling told us otherwise.  We spent a day at Primary Children's ER because Liz was so sick and they again told us it was the flu, etc.  I had to get all mean and I told them that they were completely disregarding the warnings on the growth hormone medicine and not at all listening to our concerns that her symptoms could be because of the medicine.  They just blew me off and said it was the flu.

So, we then just took her off the medicine ourselves and she immediately got better.  Her doctor agreed to reduce her dosage in half and so we started giving it to her again.  She did okay for one day and then started getting nosebleeds - I again called her doctor and her doctor said there was no way it was related to the medicine and I just got so angry because I KNEW it was b/c of that.  We just took her off it and now don't know what quite to do...I just feel like her little body needs more time to heal before we introduce it again to her.  It's frustrating because the benefits of the drug are so great, but not if it makes her so ill.

Another great thing that happened this month was that Lizzie got a WISH from the Make A Wish Foundation.  Her surgeon had recommended her for a wish months ago, but we didn't feel like she'd be ready for anything for awhile so we held off on doing anything.  The Make a Wish people called us this month saying that a company called Send Out Cards wanted to sponsor a child's wish and they would like to do Lizzie's.  Her wish was to go on a Disney Cruise - we go in February or March. 

It was the neatest experience to go down to the Send Out Cards National Meeting in Salt Lake City where they called us on stage and told about Lizzie and had us talk about what she had been through this year - I, of course couldn't get through it without sobbing - we are just so grateful for the good that has come out of what has happened to Lizzie...although, we never in a million years would choose to go through it again. 

One of the most special experiences about Lizzie's wish granting day was that another little boy named Carlos who was a "Wish Kid" also had wished to be a super hero and he wanted his super power to be the ability to make everyone be kind to everyone else...this makes me cry just typing because it's just so sweet.  The Send Out Cards people made him a costume, designed a comic book just for him and then let Carlos be the one to grant Lizzie's wish and give her a Mickey and Minnie Mouse stuffed animal - it was the cutest thing.  Carlos' condition is not life threatening from what we know, but he still suffers a great deal.  It was truly one of the most touching things I've ever been a part of.

(Lizzie with Carlos, A.K.A. HAPPY MAN!)

School is going okay...the first few weeks were a little rough.  I'd receive phone calls almost every day saying that Lizzie was sick.  She has had a really hard time with some digestive issues and medicine issues so it's been a rough go.  The days she would stay at school, I would go to pick her up and she would be standing by herself watching the other kids play on the playground or sitting by herself...I wept so many times because I just wanted so badly for her to feel a part of things and to make some friends in her new school that would just accept her for the way she is.  She's already been told she's fat at school, but the teachers were really good to squash that behavior really fast.  Lizzie is so cute - she stood in the mirror that night after her bath and said, "Mom, I just don't know why people say that I'm fat because I'm not."  I just tell her all the time that she is perfect the way she is and her body is exactly how Heavenly Father wants it to be.

It's one the of things I still cry most about...that my little girl has gone through all these horrible grown up experiences and has a hard time being a child and relating to other children.  She played at a friend's house today and spent more time hanging out with the mom than with her friend - it's just how it is now.  We were very excited today when a friend from school asked her for a play date...I am so glad because Lizzie just needs one person to feel close to in her class and I think that will make the difference in how accepted she feels.

We definitely still have our ups and downs...we just try to have more ups.  It is hard...very hard, to watch things happen to Lizzie's body that are out of our control.  Ben and I sometimes just lay in bed and cry when we talk about how she is struggling physically, emotionally and socially.  I really want to be done crying and I don't feel like we dwell on the negative, but it's just so heartbreaking watching your child suffer and struggle.

Lizzie is a person of great faith though and teaches us so much every day.  She still struggles with horrific hunger and before it would wake her up at night and she would cry because of how hungry she was.  We talked to her about praying for help when she felt hungry because we really didn't want her to eat in the middle of the night even though she thought she needed to.  After a couple weeks of praying, Lizzie came to me and said excitedly, "Mom, Heavenly Father helped me so I'm not hungry anymore in the middle of the night!"  She miraculously does so well now in the night and she knows why.   

The other kids are doing really well.  Spencer has a million friends at school and is a great student and good brother.  He still sleeps with Lizzie almost every night in her bedroom.  He loves her, protects her and is such a great kid...most of the time :)  Ben coached his soccer team this year and had a blast!

Calli is also doing really well.  I feel she's over her anger and acting out stage and she is a delight to be around.  She continues to amaze us with how much mischief a child can get into.  She cut her sheets, pajamas and hair with scissors and also managed to cut open her head - not with scissors, she actually fell off the counter and onto a glass! (a few staples required), and last night she gave herself a black eye by hitting it on her wooden bed.  She is such a little adventurer and is a funny little girl. 

We are looking forward to the holidays and just being together with no hospital stays on the horizon.  Happy Fall!