Thanks to Halfway to Hazard for permission to use this song!
"Daisy"
May 18th 2008
Daisy will be 14 months this coming week and loves playing peek a boo. We went to Cincinnati's childrens hospital this past week and was there for 3 days of appointments over all Daisy is doing well. Daisy is good on the growth chart she now weighs almost 20lbs the yogart has help alot in the past few weeks with the weight gain. Daisy now has two teeth and Dental tolds us to rinse her mouth with water every time she eats but her two teeth look great. They did the blood draw for the DNA testing while we were there. It will be nice to know where the mutation is. Daisy is still not rolling over or crawling but will stand with help. The curve in her back and rotation of her right leg they feel is all postional and may correct when she starts walking and standing on her own the same for the contactures in the ankles. The PT and OT think the pressing or ring of Daisy's hands could be sensory, so they add more things to do during PT. They did a wound culture and blood work. hopefully all will come back OK. They recommened we have Daisy go to feeding clinic due to the eating problems we tried some small amounts of table food but she gags on too thick or rougher textures. We met two families while we were there.We met Mavis and her family and Jo ella and her family, both girls are very sweet and the parents are very nice. We still don't know if we are going to be able to afford to go to the conference in Denver this June but it would be nice to meet more families and learn better wats to take care of Daisy's wounds. Thank you to Nana for coming to the rescue with a dvd player for our trip, Daisy was very happy to watch some dvds on the long trip. Thank you to Getz personal home for the up coming yard sale on June 14th and 15th. Thank you to every one for your prayers and support. Please continue to pray for all EB Families.
May 12th 2008
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.
