Happy Mothers Day! I hope everyone had a great weekend.Saturday night Daisy's friend Kayla, her parents Chrissy and Wayne, and her brother Jimmy all came over with dinner. It was nice to watch the girls playing. Daisy watches Kayla's lead. The boys had fun running around outside.For Mothers day Kathy,Rick and Eli took us to Six Flags it was a lot of fun. Daisy loved being out and seeing other children.The weather was great for her,not too hot. all too soon she will be trapped in the house again due to the heat.Today we are off to CHOP and tomorrow of to Cincinnati Childrens Hospital. A big thank you to Sharon and the Stroudsburg School of Cosmetology for all you have done to help Daisy and Me. Also Wayne and Christine. Thank you to all our friends and Family for your Prayers and Support. May you all have a blessed day.
5/10/08
Daisy has had a rough week with break down on her legs,butt and hands. This Morning some one stole Daisy's travel buddy, her DVD player with her 3 hour Blues Clues dvd. The worst part is we go to Philly on Monday 2 hours each way for GI and Tuesday to Cincinnati for a few days which is a 10 to 11 hour car ride each way with out a dvd player. Daisy had a good week of eating and has been very playfull. She is working hard with PT to learn how to stand and walk. This is going to be a long process and a lot of work for her. Daisy went for a screening with Shriners a while back but was denied help because the chief of staff and the board of governors feels that the medical complexity of Daisy's condition is beyond Shriners scope of care. We could use some prayers for my dad he has been in the hospital for over a week with an infection in the bones of the foot. They had to do a biopsy to see how many bones are infected and to decide if they need to amputate the foot or the lower leg. Please pray that they can just remove the infected bones and he has a fast recovery. To the person that felt the need to take the dvd player from Daisy please return the blues clue dvd to us no questions asked at RR4 BOX 4314 Kunkletown Pa 18058 or to the house you removed it from. Thank you to every one for your prayers and support.
May 2nd 2008
Daisy had her first Strep throat this week and lost her voice. Her skin on her legs is so broken down both legs from thigh to ankle is open and bleeding. The Infection makes Daisy skin weak and takes alot longer to heal because she uses all she has to fight the infection.Daisy will stand with help but now the palms of her hands are open due to her grabbing things and trying to hold on. We are going to Cincinnati in a few weeks. The cost of gas,food,and hotel weigh heavy on Patrick and myself. Our truck only gets about 15 to 17 miles to the gallon.The good news is she will see many doctors in the few days we will be there and maybe will find out why she is not eating and keeps pushing her hands together while pulling up her legs. Two weeks ago we moved William into the small room and gave Daisy the bigger room, However it is still too small the nurse and myself are bumping into the Daisy and each other. So this weekend we will move William into the basement with Shawn. That will buy us some time. If any one knows about puting windows or a door in a foundation/basement wall please email us.Also we need some help with a drop celing.Daisy shows amazing ability to make everyone around her smile even when she is sick.God has truly blessed us with wonderful children willing to help each other. Thank you to everyone for all of your prayers.
April 20th 2008
Hello, Daisy was out and about last week. On Thursday we went to the health day at CCM to spread awarness to young students and faculty it was a good. We met alot of nice people. It was great that they allowed big sis Jessica to set up a table and hand out awareness ribbons. On Friday we were in Philly for a Derm conference. It was a good way for some doctors to see EB that maybe haven't seen it yet and some other doctors may have some suggestions on other products and wrapping methods. Daisy had a period of healing her arms, back, and belly look great and no infections. However Yesterday she sheared open the right leg and had a large blister about 3/4 the size of her calf on the left leg, the toes and fingers always have blisters and wounds. Daisy has been in happy sprits. She is eating small amounts but has lost some weight. Yesterday she had a fun with Maureen from PT working on trying to rollover and sit her self up. Today we are going to see Great Grandma Daisy,Grandma Carol and Pop-pop Ed they are up from FL.God bless to all and Thank you for your prayers and support.
