Avery update and gratitude to all

We have been especially touched this past month - more than you will ever know.  We are very aware that we ALL are dealing with trials in our lives and although we have watched our daughter go through a lot, we feel so fortunate that it was and is not life threatening.  When my sister Cathy started this blog it was in an effort to win a contest whose winnings would be used to pay for Avery's medical needs.  Not long after entering the contest we realized that chances of winning were low and graciously withdrew.  In response to this, many people contacted my sister wondering how they could help.  Cathy opened a donation account and started this blog.  We fully intended to do whatever we had to to get Avery the help she needed and never thought to ask for help from anyone.  After taking Avery to the Treatment Center in Colorado, we are happy to say that she is doing very well and we are so glad she received the help she needed.  Avery was able to enjoy Christmas with her cousins in St George this year and she still can not believe that she has, in her words -"white skin!" Doug and I would just like to express our gratitude to everyone who helped us in any way.  We are very grateful to those that chose to donate to Avery's cause- it is hard to accept donations knowing that many of you are going through hardships and we just want you to know that it will be used towards Avery's medical treatments.  We understand that this was the season of giving and we hope to, one day, be able to give back again to those in need. We can't even tell you how lucky we are to have our family and friends - you are all amazing. Thanks to all that dropped off meals, gifts, care packages and more-the time taken away from your families to give to ours is so appreciated.  When you have to leave your family for a week , it is such a relief to know that they will be well taken care of by loved ones.  We are so thankful for all the concern, well wishes and prayers for Avery- we feel so blessed and we look forward to a new year.
Love you all.

Avery - Day 5 of Treatment

By the fifth day we had seen huge results in Avery.  They had tapered  her off of the baths to 3 times a day and wet wraps morning and night.  We found that Avery has many environmental allergies which require her to do nasal rinses ever day - this is not a her favorite thing.  By keeping her nose clean hopefully we can keep allergens from affecting her skin.  She does not have many food allergies which lead the doctors to believe that most of her problems come from the outside.  Because she does not have normal skin, it is very important that Avery be covered in emollients and creams most of the day to protect her skin from allowing outside allergens in. So many changes to be made, but we feel like we have such a better understanding of what is different about Avery's skin and what we need to do to maintain it.  One last element to be resolved was the constant itching associated with her condition.  It happens to be the last thing to go, but Avery should eventually have little to no itching in her skin.  We have already seen big improvements in itching - even though her skin is almost healed she still itches some and a lot of that is reactions to creams and habit. 

Avery spent Friday night with her friend Blake who was going home the following day - it was a blessing to be able to get to know him and his family.  It was therapy for Doug and I to talk with his Mom(Ginger) to actually know and understand that others are going through something similiar and Blake said it best  - "Finally! someone who understands!"

Avery-Days 3 and 4 of Treatment

By day three, Avery had been through blood tests, skin cultures and they had started intense allergy testing.  Through skin testing we found that Avery was carrying an infection called MRSA which put us into isolation for the remainder of the week.  This was discouraging because she was not able to interact with other kids while at the hospital.  Luckily another child with severe eczema and who was also infected with MRSA was staying at the RM House as well.  Avery and Blake hit it off and Avery was finally able to see that there were others out there just like her-in fact, they had a lot of similarities. I think you will notice in pictures the life coming back into Avery on the outside and inside.  When we first got there she was withdrawn and sad - her skin was dull, red and inflammed.  You can see by the fourth day her skin is white(really light) and has a shine to it and obviously she is feeling better.  We met with a Therapist every day who helped us to see the emotional effect that a chronic illness can have on a person and the rest of the family.  It is amazing what we learned from him.  We have learned so much about Avery and her needs physically and emotionally. Avery will probably have Eczema in some way the rest of her life, but we have been given the tools to hopefully
keep it under control and give her a better quality of life. 

Pics of Avery

The first picture is Avery in her first wet wrap at the hospital. The rest are pictures of Avery just days before coming to National Jewish.

Update on Avery

We just wanted to give everyone an update on Avery. We drove to Denver, Colorado on Sunday December 13th and found a room at the Ronald Mcdonald House in Aurora. Avery was admitted to the National Jewish Hospital on Monday the 14th. She was examined by a team that consisted of a Physician, Physicians assistant, Nurse and Therapist-they would all be working with us for the week. They promised us that they would have Avery looking and feeling better within 2 days. This was hard to believe considering the history of trying to deal with her condition. To start treatment they needed her to soak in a bath for 20 min.- this would be extremely difficult knowing the pain that Avery would need to endure. Needless to say, the baths the first few days were hard for her, but after her skin began to heal, she did better with them. After bathing, she was covered in topical steroids and put in full body wet wraps. This was done multiple times throughout the day - 2 hours wet and then 2 hours dry. At night she would sleep in her wet wrap and was sedated to avoid any itching or irritation to her skin. We were informed that it would take 5-7 days for her skin to heal and sure enough within 2 days we could see a big difference. It is so sad to us that there were so many aspects of Avery's treatment that we were aware of and had been doing - we just didn't know how to do it properly and effectively.
When we got here Avery was covered with sores, rashes, inflammation and infection. We were doing everything everyday that we knew how to do and we would still fall back into the same vicious cycle - it was frustrating and exhausting. The first few pictures are of Avery before we got here and the others are her in wet wraps at hospital.

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