Thanks to Halfway to Hazard for permission to use this song!
"Daisy"
March 19th 2009
Daisy is back in CHOP.Last night Daisy was running 101 temp even being on antibotics for four days. They are going to admit us tonight.They are talking about putting a PIC line in tomorrow..
March 18 th 2009
The past week daisy has been fighting MRSA AND Psudomonus infections. On Saturday she ran a temp over 101 and her wounds were deeper so she is back on 3 antibotics.Daisy is showing slow progress. Yesterday we went to see GI Doctor in Philly. GI increased DAISY colorie intake and are changing her to a high colorie formula. We have also added duocal to her tube feeds during the day.... Daisy loves the warmer weather. We have gone out for walks and enjoy the fresh air... Daisy's bandage room should be done by the mid April it is very exciting to see it devlope....
Thank you to every one for your help with the project and for all the prayers and support.
March 9th 2009
Daisy went to meet her new Pedatric Doctor today.It is a long drive about an hour and a half each way, but it is worth it. Dr.Santos was very nice and the whole staff came by to meet Daisy. I feel secure in knowing that there will be a plan of care and communication between doctors. Daisy is in the 33rd percent for height( yeah) But she is only in about the 2 percent for weight :( Daisy has not been eating much lately and losing weight even with the tube feeding. I have to follow up with GI. We talked about her chest bowing out and her ribs flaring.He recomed we have a surgen look at the shape of her chest so when we go to Cincinnati in May we will talk with Dr Azikahn.
over all Daisy is doing OK .Today she was a little cranky and doing alot of leg lifts to aleve the pain in her legs. I think the right leg is infected because the wound has gotten deeper and is not healing,but she is not running a temp...Daisy will be 2 yrs old on March 27th. an amazing gift because they thought she would not make it through the night! She is now trying to do the typical 2yr old things like run away when she needs her diaper changed and wants to feed her self aka play with the food...Yesterday she pulled the plant down and as she sat there with dirt on herself crying holding two leaves I could not help but laugh! I thank God eveyday for all these precious gifts. Please pray for all the children who suffer from EB especially the two new babies Layla and Johan so their parents may know the joy of watching their child learn to walk and play.
Feb 25th 2009
We are home. Daisy got discharged last night.Daisy's MRI was ok only a small spot that the doctors felt was not a problem. Daisy is still under the weather she is now coughing and is conjested. Her balance is getting better she was more active today.I think she is getting over this virus. What a scare she gave me I am very thankful it is only a virus. Thank you to everyone especially Blue Mt Community Church for all the extra prayers. I truley believe in the power of prayer. Keep praying that the coughing doesn't cause blistering in the airway.... The room for Daisy is coming along Liberty home builders started siding today and insulation will go in tomorrow. We can not express how grateful we are for all of you making this room possible for Daisy. Wishing all of you many blessing and joy each new day.
