Daisy 2 years old!

Daisy

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"Daisy"

Feb 7th 2010
Since last Monday alot has happened. Feb 2nd I had a C-Section and Daisy became a BIG SISTER!! she now has a baby brother named Daniel Ethan who was 9lb 3oz. Daisy visited me and her brother that night her first words were Hi Daniel then she offered him her blanket. It was so sweet! Then Feb 3rd Daisy ran a temp 102.7 and was having more pain and vomiting. Feb 4th was ok Daisy still had the same problems with vomiting running temps between 101 and 102 and tummy pains. I spoke with Derm and GI on Thursday and they said she needs to come in and figure out why she is having so many problems with the G-J Feeding tube. Pat brought Daisy, Shawn and William down to the hospital to see their new brother and me. it was too short because Daisy and I won't get to see Shawn and William again until next weekend. Feb 5th Friday Daisy and Pat picked me and Daniel up from the St Lukes hospital and we all Drove down to Childrens Hospital of Philly and that is where we are Daisy is have more vomiting issues not eating and her nutional levels have drop severly since last week. Thank you to Maggie and Don for all their help with the boys, to our boys for understanding and being good, to our nurses for seeing us through this rough time. Please pray!! For Daisy nutrional levels to go up, for her digestion problems to be resolved this visit. Pray for me to heal quickly had have more energy, For Dad to have energy to take care of all of us. For baby Daniels Jundice to start going down. And last Pray for all our other children to stay health and understand we will all be together soon and not to worry. Blessings to all the Sherman Family.
 
Feb 1st 2010
Daisy came home tonight!! How ever she is not drinking or eating and still having some vomiting but they said her body should get use to the g-j tube and a new way to digest the feeds in about a week. I pray thats true. Daisy had more energy today and was in good spirts tonight. Tomorrow morning Daisy will be a big sister!!! I pray Daisy keeps feeling better and stays out of the hospital for a long time.
 
Jan 30th 2010
Daisy got her G-J tube last night. It was a rough night. Daisy was Gaging every time she tried to drink. her heart rate has been up. We hope its from being dehydrated. This morning she is just lying there crying on and off.I hope today gets better. We have dressing change the doctors want to look at her wounds which are growing Yeast and Psudo bactiria.They did get to do blood test yesterday to check all of her levels which at least will tell us if she is absorbing most of her nurtient,We were worried because her protien levels have been low lately.Please pray things go well and Daisy gets to go home before Tuesday.
 
Jan 29th 2010
Daisy is still in CHOP.They ran some test but no answers yet. Daisy is still having tummy pains and on and off temps, not eating, lose stools,she has foam and mucus when we check residuale. Today we are having an ultra sound and some bloodwork done. I guess we will just have to wait and see.The white patch of skin with red dots under it they cultured yesterday it looks like some other strange rash maybe yeast.Hopefully we will get to go home soon.I'm suposed to have Daisy's new baby brother via c-section on Tuesday Morning which is his actual due date. Please pray Daisy gets healthy and stays that way until I'm healed enough so I can take care of her.
 
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RT 209
Brodheadsville, PA 18322

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What is EB?

Daisy was born with EB.
There is no cure.
What is EB?