Thanks to Halfway to Hazard for permission to use this song!
"Daisy"
Jan 26th 2012
Thank you! Hope Hospice,The butterfly fund and To those who help make the Christmas possible for my family. A special Thank You to The Colton Society for helping with getting us needed meds and products the insurance wont cover. Daisy was very sick the week before christmas and the doctors talked about putting Daisy in the hospital for IV Antibotics the Friday before christmas. The lord heard our prayers and Daisy Improved enough that we stayed home for christmas. Daisy and the other children had a great day visting with the family and opening presents...Daisy's wounds were real bad. The worst we have seen in months :( her strength amazes me! Even when the legs and feet are so open she will want to try to walk and play with others even if its only a short time. It is very hard for me to watch her get up in the morning so stiff she is all bent over and can barely walk but she gets moving despite the pain. Daisy has been asking why she has EB and not the rest of us.Daisy prays sometimes for God to not make her have EB ANYMORE...Daisy has been sick alot she just finished antibotics again for a very bad urineary tract infection.This is Daisy's third round of antibotics since the middle of December.... Daisy loves the the recent weather and has been outside alot lately this of corse has caused alot of damage the whole back of left calf was a HUGE blister last night. Also her front of her calf on the right, The blister went from the calf down the ankle to the bottom of her foot. Yet Daisy still will want to play outside! She is one tough cookie!!... Daisy is very exceited about her big sister Jessica's up coming wedding.Daisy will be the flower girl.Daniel and big brother William will walk Daisy down the isle at the wedding.. Daniel will be two in a week it is hard to believe.He weighs more than Daisy but she is still taller. William is getting so big! 15yrs old. He is a big help with Daniel and Daisy.Please pray for healing and good health for Daisy and for a job for Dad.We really need some type of income soon. We will try to post new pictures we are still having trouble with this site. if we can not we will post the pictures to the other site www.beautifuldaisy.webs.com. Thank you, Wishing you all many blessings.
Dec 20th 2011
I hope everyone is well and ready for the holidays. Daisy has recieved A christmas mircle. We were able to go to Cincinnati childrens for the EB clinic Thanks To some Special Angels!! Our trip went well Daisy was able to see some other EB children she hasn't seen for a while which was nice:) The good news is that Daisy is doing well she saw Dental, Teeth our ok but may need to be capped later on.The eye doc said she doesnt need glasses but to watch if she continues to have blistering in the eyes,Pain team was ok, Nero doc said all was good, Hand doc told us to leave her hands unwrapped but to watch a space that is starting to web between her fingers and that she needs some therapy to strengthen her hands,Daisy also needs therapy to strenghen her left hip because she is rotating her leg in. Derm was good wounds are slightly improved from last visit a year and half ago.GI gave new meds to help with granulation tissue in gtube and some meds for her bottom.The only bad things was Daisy's weight is NOT good :( She need to try to tolerate more tube feeds .... While we were out there Daisy had some test done. This proves our move to Florida was right for her. for the first time ever Daisy's HEMOGLOBIN was 11.3 all her levels were NORMAL Except for her iron this is AMAZING!! Thank you Lord for blessing us with this wonderful news. We really beleive the climate change is tough for her while out there Daisy started Iching again and her wounds got worse she is currently on systemic antibotics and her wounds are bad we haven seen them like this for a while.Please pray for Healing for her and for Dad to find a job. We wish all of you many Holiday blessings and a very Merry Christmas.
11-17-2011
Daisy has had a relatively quiet month health wise. Daisy has a much needed trip to Cincinnatti comeing up in a couple of weeks which we are still trying to afford.the cost of this trip is putting an incredible strain on our household budget.
Daisy's wish for a screened in pool was half granted by the Marty Lyons Foundation. They did manage to get the pool installed but not the screen to go around it which was inteded to help keep the insects off Daisy and out of the pool. So to that end We would like to Thank the Marty Lyons Foundation for all that they have done in trying to make the whole wish a reality.
The past few weeks we have been looking back at where we started with this journey and how the doctors all said this journey was going to go. Daisy is 4 and half years old they said she wouldn't make it past a year and if she did she would never walk,never talk,and never live to be this old.We are truly blessed to have this fantastic strong willed little girl thst is able to walk,dance and sing for short periods of time. Who for her whole life when faced with a mountain has climbed over them and has never stoped.
Thank you all for the prayers for Daisy and our family.
Nov 1 st 2011
We just ended EB AWARNESS WEEK 10-25 TO 10-31.
We spoke to Daisy's Girlscout troop about living with EB.
The week before while at the girlscout meeting someone accidently stepped on Daisy's hand. Daisy COULD NOT MAKE A SOUND. The leader noticed Daisy turning BLUE. The leader then started yelling SHE IS TURNING BLUE! Pat Daisy's Dad started mouth to mouth on the second breath she unlocked and started crying. This prompted alot of questions from parents and girls. This weeks meeting .We brought in some bandages and Daisy's equipment to show the girls how we wrap Daisy and what the feeding pump and AMBU-bag are for. We also talked about CPR and how these things help Daisy to live and that they are nothing for them to be afraid of. The girls were very interested and asked lots of questions. This also helps Daisy to feel more comfortable.
NOVEMBER Marks 1 year that we have been living if Florida.
This year has been full of ups and downs.
Positives:
Daisy has ONLY been in the hospital 6 times.
No PICC line this year.Which is good because alot of her veins are Scarred.
Some improvement in her skin overall.
Less wound infections. More time home to play with Family and friends.
Negitives:
Little skilled nursing care. Most of our nurses are right out of school with little to no nursing expereince.Right now we have agood set of nurses. THIS IS THE FIRST MONTH in a long while we have most of our shifts filled. Thank you to Jennifer at PSA.This is hard for us because if Daisy stops breathing the Nurses are all we have until EMTS can get here.
Medicaid will ONLY PAY FOR ONE WEEKS WORTH OF BANDAGES!!! What do you do for the other 3 weeks? There is a program helping us month to month but if their funds run out. Daisy will not get bandages. I have tried to get a manager at medicaid to talk to with no luck. This scares me ! We know she can not live with out these bandages and we don't know how to be sure she is going to get what she needs.
It took us until Feb 2011 to find a doctors group to take Daisy. We found a Pediatric complex care clinic. Most of the doctors are great. How ever the PEDIATRIC HOSPITAL They are linked to is not great. They are HORRIBLE! Daisy last admission the hospital stated that Daisy was too complex. We had a meeting with her Doctors and Social worker. The Pediatric Hospital requested that Daisy go to a general hospital in the area. If we insisted on bring Daisy to the PEDIATRIC hospital, We the parents would have to sign a contract stating we would agree to giving our Daughter SUB - STANDARD care. Example they wanted to give us a TECH for dressing change because dressing change took to long FOR A NURSE and their nurses have other patients. I asked if Daisy stops breathing during dressing change if the TECH could start CPR. answer NO. I asked if the TECH could start wrapping her wounds while I start CPR? answer NO! but if any one else comes to that hospital with big wounds a nurse would do their wound care NO MATTER HOW LONG IT TAKES.
Now we have no hospital that knows her if something happens. I am Terrified Daisy has had Three none breathing spells in 2 weeks. I need a Team of Doctors and hospital staff who know her and can help her.
The services out here is not geared towards children.
Dad still has not found a job.
We are loosing the van which we transport Daisy and her power wheel chair to doctor appointments.
We need help and do not know where to go. In PA Daisy got more services but the changes in climate made her skin break down more easliy she had more infections.I pray God guides us to do what is best for her.
This year Daisy still has a lot of problems but not as many that require hospital stays it is better for her here .Daisy is very happy here and does not want to go back North. I just worry about her health care. As Daisy's Mom I want the best for her and Im sad to say I feel that I am failing her after a year I should have a team of Doctors qulified to care for ALL her Medical Needs.
Daisy has had some kind of normal life.Loves being a Girl Scout.
We are grateful for all of the people who have helped us and to the new friends we have made. Please continue to keep us and all the EB families in your prayers. We wish you all many Blessings.
