Dani has a very rare genetic disorder call Hurler's Syndrome or MPS I. Its part of a group of storage disorders called Lysosomal Storage Disorders. You can find out more information at MPSSociety.org You can see the first part of her journey on danicaboni.blogspot.com. This is the beginning of a new journey.
Tuesday, March 29, 2011
Day 2 - Hospital Visit
Around 2:45 am I woke up to Dani saying "Kelli, Kelli, Kelli, Wake up it is morning. " lol luckily she went back to sleep. She was up and crying that she wanted the cast off and her belly hurt. The nurse gave her more anti-naseous medicine and I turned on a Strawberry Shortcake movie and gave her some ice water and that seemed to help. - 5:30 am
Also it is my baby's 14th birthday ... Happy Birthday Gabe!
Dani and I just woke up from a nap (2:45pm). She seems in good spirits but wants to go home (without) the cast. They had us lift her out of bed and put in her in a wheelchair to make sure we knew how to do it. That should be interesting. I am not sure the Grandma's are going to be able to handle that. She is really heavy although it will help when she does not have on the tubes and wires to mess with also. She still complains about her belly hurting but we think that is a combo of her meds and her not having anything to eat for a day and a half. She did have a couple of Peeps before her nap and kept those down. They are going to give her Zofran every six hours to help.
My nephew Steven came by to visit for a little bit. He had a doctors appt at the hospital next store. Jason is here now. I believe both Grandma's are coming later and Aunt Jackie.
Missy Miss has a temperture of 101.2 so her heart rate is on the high side. She just took her heart medicine and some tylenol. - 7:45pm
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Thinking of y'all.
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