Thanks to Halfway to Hazard for permission to use this song!
"Daisy"
July 27th 2010
Yesterday was great. Daisy is doing better with her tube feeds, she is on 75% boost and only 25% water at a rate of 50 per hour. The weather was cool enough for us to go on the swing set in the evening. Daisy and Daniel had fun being outside with a little breeze on the swings.I can not wait for the cooler weather so Daisy can be outside more. Thank you all for your prayers.
July 20th 2010
I'm sorry it has been a crazy month for us. The good news is we have been home! But back and forth to doctors. The state cut Daisy's nusing hours the end of May, Daisy has been having a rough time with the blue spells and a very hoarse voice two weeks after they changed her feeds. Then she started gaging and spitting up. Then the state cut her nursing again!!In the mean time we have My Dad and My Daughter Jessica up from Florida for 10 days. Daisy loved seeing them also she enjoyed visiting with her Great grandparents and her Great uncles. Daisy voice got worse while they were here so it was off to see the PED doctor then Two days later the ENT Doctor. When she was scoped in July they found out that she has damage from reflux which see did NOT have when she was scoped in May. Last week we saw the Derm Doc and then a few days later we went to the PED Doctor, Daisy still has a very hoarse voice and now she is throwing up the tube feeds even at a lower rate and 1/2 watered down. The poor girl is up 1/2 the night gaging, choking,and moaning in pain because of her tummy.Daisy also is walking less and complaining of pain and weakness in her legs she gets so mad when her legs hurt she cries I can't walk my legs don't work right, it is so sad. Pat and I have to carry her more and more which is causing more booboos to her bottom. Please pray that she startes tolerating the feeds and that her voice comes back...... Wishing you many blessing, The Sherman Family
June 20th
Daisy has had a very busy two weeks first with Pop pop and grandma staying over for a few days then doctor appointments a memorial service for great grandma Daisy and finally a week worth of doctor appointments and the Debra patient care confrence in Cincinnati.
The highlight of course was the patient care confrence it gave Daisy the chance to meet and play with children suffering from the same disorder.This was extremely important for her to be able to do.She was able to see that she was not alone for even at 3 years old Daisy realizes she is diffrent from other people and on several occasions has asked us why she has to have bandages on and how come we don't have boo boo's.For Dana and myself it was a chance to see some friends we have lost touch with and make new ones,but it also gave us the chance to meet several people who have helped us with so many EB issues for the first time.
We would like to give a huge thank you to Debra for all they offer to Eb families. They are a non profit orginzation that offers not only financial support but also such important services such as a nurse educator, wound care clearing house,but also a new family advocate program to help new families learn to care for their new child.
Also a Thank you to befriend eb for helping make the trip possible.
Please show your support for these two orginzations by visiting their sites located in the links section.Thank you for the continued prayers and support!
06/05/10
On May 25th Daisy had to spennd a night down at Chop she was running a fever of 102 and har glands where swollen.They where affraid of the infection being in her lymphnodes. Fortunatly Daisy responded rather rapidly to the antibiotics and was released the following day. daisy is scheduled to go see a cardiologist this thursday at Chop her heart rate is erratic and keeps falling bellow 60 beats per second which is slower than the 65 they say is the absolute minimal beats per second. Besides these few little issues Daisy has been doing really good and like alll three year olds is moveing a 100 mph and getting a little to dareing and into a little mischief. She has gotten a blast out of the kiddie pool she got and is able to use it before dressing change, she loves to splash around and be outside before the day get's to hot for her. Thank you all so much for your continued prayers for Daisy!
