Several have asked for an update...so he we go!
Bailey is doing so well. He is really loving all of this food he can eat now and loving not having to take food with him. Parties and church gatherings are so much fun when you can eat like everyone else. At first his little belly was pooching from all the food he was consuming, but it has went back down and he is eating back to normal now that he has tried everything again.
He is really enjoying the summer and having so much fun at the beach. He has been swimming, surfing, and paddleboarding so much he actually got swimmer's ear, but that is healing and all better. :) The water doesn't burn and the sunscreen doesn't get in his skin and irritate like before. We are so happy! We have had so many great beach days as a family since coming home.
My sweet boy is wearing shorts and short sleeves for the first time in years. He is not ashamed of his skin and loves being comfortable in whatever he chooses to wear. He actually got a few new outfits while in Denver that he would have never wanted before. His shoes are new and have no blood stains! He loves his 2 new pairs and wants to wear them all the time. Shoes were really a pain before.
Treatments have been going good and we have a little hospital area set up in his bathroom with all the needed things for baths and treatments. He is taking 2-3 baths a day. Meds and cream following each one. At night he takes a wet wrap and sleeps in it all night. This will be cut back this week. I just got off the phone with the hospital in Denver. Today he will step down to level B of treatment, which is only one step away from maintenance. They say the redness may never fully go away because his skin was gone or open for so many years, but we can live with scars. It will be a reminder of all he has overcome.They have been so kind in helping us along the way and going above and beyond to help B. They seem to care about him and his quality of life just like they were our close friends. I have sat here and cried and feel like such a baby...but they are tears of happiness. They have truly changed his life and given him his childhood back. I thank everyone who has helped us in this journey.We could never have done this without you! God is good. He always provides.
p.s. For those that may be curious about the bills and how close we are to having what we need...we have not gotten anything but some EOB's from our insurance. They say there are more coming. We have gotten no bills yet from the hospital and it seems everything is being billed out individually instead of one huge bill. Every dr, lab, and room bill are all seperate. I will keep you posted on this and let you know! Thanks for all your help and kindness!
Julie, Chris, Kirsten and Bailey
Hey guys!! We are so excited. Bailey is making progress daily. Please see the pics I added to this page. God is so good!!!!
Thanks to everyone who made this trip possible. Bailey is doing well and continuing to make progress daily! We are hopeful that this will work to keep this disease easy to live with. We could not have done it without each and every prayer and donation from you guys. My blog has our day-by-day journey if you would like to read. www.thehyders.blogspot.com
Updates daily on our trip to DENVER...visit www.thehyders.blogspot.com
to see pics and daily logs of our visit at the National Jewish Hospital. Thank you ALL for your support.
Only 7 days to go! Today was our awesome BBQ fundraiser. We served around 350 plates. I am amazed at all of the love and support we have received from our friends and family. We can truly feel God's love and prescence through all of this. Thank you so much to our supporters! As we prepare to leave this week...money will be one area that we won't be stressing over. To know that we have the money for our flights, cars, hotel accommodations, food, etc means so much to us. Thank you Lord for your abundant blessings!
Well....It's only 17 more days until we leave. Bailey is getting very nervous and not really ready to go. I have our flights and rental car booked and the first nights hotel stay. We are hoping we will get into the Ronald McDonald House for the other nights, but it is first come first served...so no reservations. Today I am working on getting the last couple of medical records rounded up, pictures of his skin developed (in different stages of breakouts), and checking our packing list the hospital sent us. We had to buy lots of extra socks, pjs, and wet wrap supplies to take with us. Hopefully, we have everything now.
Our appointment is booked and we just got our flights! We will be leaving in the afternoon on Easter Sunday (April 20) and return (tenatively) on May 3rd. Right now we are planning on 13 nights, but they told us it could be longer. Hoping 13 will be plenty :) Going to to work on finding a rental car and plans for Kirsten next. Right now, I am going to pile in the bed with the whole family and watch FROZEN while we snuggle up! I will keep you posted!
GOOD NEWS! Thanks to all of you, our deposit has been made! They are telling us that our insurance has sent them info on offering much better benefits than before, BUT she did tell me that I should be prepared to owe as much as $11,500 after-the-fact. She said there is always a chance that they can deny certain things as "not covered expenses". She cannot guarantee exactly what our total will be until after the visit. They are going by our $11,500 out of pocket. Anything that they do not cover will be "balance billed" and they do not offer any write-offs or anything.....On a better note, now on to scheduling. They have let our advisor know that we are good to go. Sarah is supposed to call me back and get it on the books!
Wanted to extend a thank you to some supporters that I can't seem to find an address for.
Doug and Tammy Goolsby
Thank you so much for your generosity and for donating to Bailey's Fundraiser! We appreciate you so much. If you know one of these people personally, please extend our thanks to them :)
I spoke with our patient advisor just now and she said to be expecting a call anytime to go over our new benefits and to make the down payment. She has sent over my info to the financial counselors and they will be calling shortly (who knows how long that could be...lol). I also got the financial counselors number and called and left her a message to try to speed up the process. :) As soon as the down payment is made, we can schedule. Our advisor was very sweet and said mainly the hold up was she was out of the office last week and our file just kind of sat around while she was out. Prayers for a call today. I am staying by the phone. :)