We spent the day in Pittsburgh Childrens and Faith is just amazing! She was having a EEG done today to check for seizure activity from her stroke. Faith was having uncontrolled seizures up until Christmas day 2014 and I am so thrilled to say since has not a single one. Faith is diagnosed as epileptic but God has lifted seizure activity. She left the hospital on five seizure meds alone and is currently down to ONE which they said if she continues w/o seuzires we can talk in six months about weaning this one. The bleed on her brain (motor strip) will never go away and can always cause a seizure even years out but Faith has done so well this far I refuse to believe it. We started the day with blood work for her Prograf level. It was super low last time and now if rather high so amount of anti-rejection was decreased and a recheck will be done in a week. Next was a EEG. I had to keep Faith up until 10P the night before and get her up at 5:00A and not let her sleep before the test so her brain was over worked and they would see anything that would spark a seizure including strobe lights right in front of her. Faith was terrified at first and super tired but by the end she was giggling and chatting. They place 26 leads with glue to her scalp - so of course what child would not be afraid. Again EEG showed great progress and no seizure activity PRAISE GOD!!!!!! Lastly we saw her amazing Neurologist and after many neurological questions and examining her she said ................Faith is AMAZING and neurologically right where she should be. As a team we didnt think Faiths outcome would be anything close to where she is from what all she has been through. Talk about a proud Mommy moment especially since our last neurological apt the Dr. kept saying ......8 times to be exact we will not know her delays until she is school aged. Well today was very encouraging and lets me know all Faiths hard work is really paying off (pt, OT, Speech therapies.) Fun stuff: Faith is walking and really doing great physically. Speech....... she is a little mocking bird and loves to make sure everyone knows she is Daddy Baby . Some of her favorites are more, pease-Please, Bless- when someone sneezes, apple auce, Elmo- Abby pease Mommy. Feedings- When Faith was sick it kind of took us backwards in the sippy cup area. She doesnt even want it on her high chair. Foods just within the past 4 days has changed drastically she is starting to swallow foods instead of spitting everything out. Her favorites are Mommys lasagna, Coopers peaches, puffs and when Laci sneaks her a bite of a star chunch :) Her NG tube is going no where until she can drink all of her fluids and take all meds so this is our focus at the current time. I cant believe how far Faith has come and every day watch her play and enjoy life and first thank God for placing her in my arms and also for the angel and donor family and pray one day I can hug that mommy and tell her how she has changed our lives. Thank you all for the prayers. There is nothing like seeing someone who has been praying for my baby whom I have never met and they are wearing a Team Faith shirt and them telling how she has touched their life and really opened their eyes to the miracles God is still performing present day. https://fbcdn-sphotos-h-a.akamaihd.net/hphotos-ak-xpa1/v/t34.0-12/10500410_10152774268689770_7335289529407816787_n.jpg?oh=cf06140c3524b5dfecc8c757c723b08b&oe=5436A935&__gda__=1412870406_7dcb11032bc989720ac1243363652bdf
Posted on: Wed, 08 Oct 2014 02:00:08 +0000
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