Angelina's 24 hr EEG

Angelina went on December 18th to Cook Children's for her 24 hr EEG. She did quite well while the tech placed all the probes on her head. She usually screams, cries and throws a huge fit including making herself sick. This time she more or less just whined and griped about it with a few cries here and there. No getting sick though! The day and night were pretty well eventless. Lots of movie watching and playing but nothing else to mention.

The nurse practitioner came in this morning and advised that at a quick read through no seizures were captured. That was great news! Then came time for her to get the probes taken off. That was a complete ordeal! She has such a fit. Caitlyn had come by to see her so I had a helper to keep her hands out of the gluey stuff that was on the probes. Angelina was completely devastated. Her feelings hurt beyond repair, that is until she noticed her movie on and paid attention to that!

She was so glad to be home! That girl slept for almost 4 hours! I guess at any age being at the hospital just takes it out of you.

TeamAngelina.org has been launched!

Today Marcey has gotten our foundation website launched so that we can begin to receive donations and golf tournament sign ups. It is a work in progress so please bear with us and if you have any pictures you want to add, please email them to me at alsafford@sbcglobal.net! We will be adding a picture page as well!

Angelina's Neurologist on Channel 5 and other stuff...

I don't know if anyone saw this, but last night on Channel 5 Angelina's neurologist was part of a news story about a boy who underwent a surgery called Deep Brain Stimulation. This is significant because while Angelina doesn't have the same kind of problem this kid did, she does have a type of dystonia and DBS helps to correct this. Dr. Acosta says right now they don't do this on anyone under 7 but when she gets older she could be a candidate before that time. It really is pretty fascinating that her neuro doc is part of a cutting edge team that are the only ones in the U.S. doing this type of thing on kids right now. It further strengthens my faith in Dr. Acosta that he can and will do everything in his power to help her without hurting her. We just love him!

Here are a couple of links to check it out.....
http://www.cookchildrens.org/neurosciences/services/Pages/dbs.aspx

http://www.nbcdfw.com/health/tips_info/North-Texas-Boy-Undergoes-Revolutionary-Brain-Surgery.html

ALSO - Marcey and I are putting together a non-profit corp to raise money to fund therapies that insurance does not cover like Hyperbaric Oxygen therapy and additional PT, OT and ST here at home. Insurance will only cover so many visits, but Dr. Acosta advised that intense therapy (i.e. additional therapy) would be the most beneficial to her right now.

With that being said, our friends Robin and Gregg Truitt - the kids God parents - have an annual Christmas party. This year they took it upon themselves to ask for donations for Angelina to start our fundraising process. They didn't expect more than $50-$100 to be collected but they raised about $300.00. We went to their party and lots of folks were asking for an update or the whole story if we didn't know them. It was nice to see people we didn't' know interested in Angelina. After we left Robin and Gregg talked for a little bit about how special she is to them and how dedicated we are to helping her and that any amount of money can help her.

Needless to say we were very touched by this giving and made sure we sent out a thank you email to let those folks know just what they were giving to. It was a great Christmas Spirit surprise!