Father's Day

Father's Day~
Jake's first Father's Day was spent at Doernbecher's Children Hospital...as was my first Mother's Day. Though this is not where we anticipated we would be we were able to make the best of our situation and enjoy the fact that we have a beautiful baby girl who brings us joy on a daily basis. I (Rebecca) have been so impressed with Jake. I marvel at the love he shows Claire. I never doubted that Jake would be a great dad but I am nearly moved to tears every time he looks at Claire and tells her she is precious. I do not know if he will ever fully understand how I am impacted by his gentleness and patience and the tenderness he shows Claire and in so doing...shows me.

Claire gave Jake the best present he could have wished for...36 hours without a single seizure. It has been 16 days since she has had a seizure free day. The photos that will be attached to this post are from her seizure free time....the times we cherish the most.

Claire's seizures returned on Sunday and unfortunately we ended the evening with 2 failed doses of rescue medicine and had to resort to using her IV to bail her out. On the bright side, she has been seizure free since (12 hours) and woke up enough to feed by mouth. I also got to practice putting in Claire's feeding tube last night as she was too tired to eat after all of her medication. Though it is a skill I wish I never needed to learn...I placed the tube in the right place on the first try!

Today (June 21) we will be going up on her Zonegran which we feel is truly helping her but only time will tell. Please pray with us that the increased dose of Zonegran is beneficial and that we can still make it home this week.

God Bless and Thank you all for your support and prayers...we would not make it without you.