The funeral service for our beloved Katelyn will be on March 9th at 1400 hrs. Visitation will commence at 1100 hrs and all are welcome. We will try to have some type of finger type food, snacks, and drinks. We are also working on a photo collage DVD. We will be going down to get her remains tomorrow or Friday. We have not heard if she is ready to be picked up yet so we will call tomorrow to be sure before we head down. We are headed out for a snowmobile ride again tonight. It is nice to get out and let our minds relax on the trails. We have created a donation page on DebRA.org and will not be updating this page much longer. https://secure.commonground.convio.com/debra/personalfundraising/project.html?personalFundraisingProjectId=a0qA0000002GcAVIA0  We set a goal of $10,000 on the page and will have to work at that. I am sure we will have several thousand to donate once we pay our medical expenses. We also donated all of Katelyn's extra wound care supplies the hospital could not reuse to DebRA. It is nice knowing they will go to someone who needs them and not the trash. If you have time this weekend check out Jonah's EB auction. http://jonahsebauction.blogspot.com/  All proceeds go to DebRA as well and you get some pretty good items too. We have already found a few things we will be bidding on.[...]

We are having Katelyn's service at the Reamer Galer Funeral Home in Pickford, Michigan. http://www.reamergalerfuneralhome.com/  It will be on the 9th of March at around 1300 hrs. We have to solidify the time with the Priest who will do the service so nothing in stone yet except for the date. There will likely be a few hour visitation before the service as well. I will post once we have a definite date and time. The announcement in the paper will not go in until the Sunday before the funeral service to avoid confusion since it is almost two weeks away. Thanks for all the well wishes and support. It is nice to read through all of the posts. We are slowly getting organized at home and unpacked. Katy's cousin is coming over tomorrow to help clean out Katelyn's room. We have to go through all of our baby stuff and try to find it a good home. I also have to install the new washer and a few other projects around the house. Plenty to keep me busy so I hope it does not snow so I can concentrate on the house work. We went for a 1.5 hour snowmobile ride tonight. It was nice to put some miles on the sled. I will post once we hear on a definite time. It will be nice to see all of the family, but hard to go through everything again. We are ready to bring our girl home. We better plan our trip down to get her since it is coming up soon. Good night.[...]

We dropped Granny off at the airport this morning and made the journey home safely. The roads were the best they had ever been and the sun was nice as well. Lots of snow here at home. We will call the funeral home tomorrow and solidify Katelyn's service and let everyone know. Next weekend would be best for many of my coworkers but the following (9th) would be better for us I think. It is nice to be home but we are still not whole. Lots of work ahead here and we will have to find a good home for all of our baby stuff. I am sure we have enough to fill one if not two stores.  No joke! It will be sad to see them go but nice to have the extra room at the same time. We have been saving most of them for almost 5 years now. Katy thinks she might have someone for some of the items. I better get back to cleaning and unpacking. It is amazing how much stuff we accumulated down there over the past 7 weeks. [...]

I added the photos from our personal camera. I have a few more but could only do 25 at a time. They all were from before she passed, except for the last one. She is such a beauty.[...]

We were able to post 20 or so photos that our good friend Bri from Life on Paper Photography took. We used the B&W ones so you can focus on our beautiful daughter and not her wounds. EB is a terrible condition and it is hard to believe our little butterfly had to suffer so much. I can only imagine how much pain and suffering those with EB go through who make it to adulthood. I have more photos on our camera I have not yet had time to post. I will as soon as I get them on the computer. If you are in the area please use Life on Paper Photography for your photos. Bri is awesome and we cannot thank her enough for all of her time and support.[...]

It has been a long night. We had a pretty good day with Katelyn yesterday considering everything. We checked into a hotel with the rest of the family so Sean can play in the pool and we can have a change of scenery. My mom Patty is still at the Ronald McDonald House cleaning up. We will have to get her a room here with us tonight since we will be checking out of the Ronald House today. I could not believe how much stuff we accumulated in Katelyn's Hospital Room and our room at the Ronald House. We are going to have a full van heading home. I have to call the funeral home today and find out how long we have to wait to take our girl home. We might have to make a trip back down to get her depending on how long it takes. Then it will be settling back in at home and planning her funeral. It will be super hard to see her room and all of her stuff when we get home. We have a house and two garage stalls full of baby stuff. we are still emotional and break down often, but we are trying to focus on our boy and all of the things Katelyn gave us in her short life. We now have to carry on her memory and the memory of her big brother Evan. They are our two EB Angels and we are very fortunate to have had them both in our lives. It just sucks it was for such a brief time. Thanks for all of the prayers and condolences. Many people have said Katelyn has touched their lives and that is nice to hear. We started this post to keep friends and family informed and it has become much more. Bri did an awesome job taking beautiful pictures of our last day with Katelyn. We cannot thank her or the other friends who made their way to visit us at the hospital. Many of them are now lifetime friends. We will add many of the pictures tonight when we have time. More to come...[...]

Katelyn passed away in her mothers arms at 1610 hrs peacefully. She was well medicated and was without her breathing tube for only 20 minutes. The hospital staff and everyone worked very well and were very sensitive to our needs. My wife is just as strong as my beautiful daughter. We are sad she is gone but glad to see her pain is over. Thanks to everyone for all they had done. I will update a few more times and try to post when her funeral will be. If you feel the need to send flowers or donate from now on please do so to one of the EB organizations on this site or the Ronald McDonald House. We will donate any unused donated monies to the DebRA organization as well. Katelyn weighed in at 6 lbs 5 ounces so she was definitely gaining weight well. Thanks again and I will update again tonight after we clean up and visit with family.[...]

Katelyn is still stable. We had a long talk with our doctors and soon Palliative Care about her comfort. We will be removing her breathing tube tonight and raising her medication. They are also stopping labs and other efforts to ease her suffering. She also does not have to endure anymore dressing changes. One of the Respiratory Therapists is also a photographer so she is here taking some pictures for us. We also reached out to Bri from Life on Paper to see if she can come and take pictures as well. The more pictures the better. Jill and Dave are also bringing pizza and food for us which is great not having to worry about eating. We are taking pictures so I have to get back to my girl. Thanks for everything and we will update as we can and post funeral arrangement information as well.  [...]

(Mom post)The doctors were just in. They gave Katelyn a day, maybe two. She appears to be resting comfortably. My goal is to hold her and let her know that she is strong, beautiful, and that she is one loved little girl.[...]

First off we would like to thank all of the people who worked at and attended the benefit Dinner for Katelyn back home tonight. They raised over $6,000 which is amazing. We wish we could have been there to help out and thank you in person. Getting all of this support makes me feel like I should do something in return. It is hard not to since I am usual the one who always gives without asking in return. From the bottom of our hearts we THANK YOU![...]