Although MikeyD did not really eat much on Sunday and he had pain in his stomach all day he did eat good today and so far so good a full day without having any stomach problems.
Moya and I have a conference scheduled at 4 o'clock tomorrow with all the doctors and therapist involved in MikeyD's recovery includingt the Doctor, Neurologist, brain injury specialist, Phscologist, charge nurse, Physical therapist, occupational therapist, nutrionist and speech therapist we will all be meeting to go over where we are now and where we are heading. I am really going to see if we can get the feeding tube removed ASAP even though he is not able to eat enough without the feeding tube I really believe that feeding tube is a big drawback causing a lot of discomfort and problems. I feel if we can get rid of the feeding tube and start him on an easy to digest diet that in a few days he will be on his way to being able to eat and not have any more discomfort and problems. Tonight we had an unexpected family get together with MikeyD the girls had an unexpected suprise visit with their little brother that they had no idea was going to happen due to something else that came up. All they want to do is be with MikeyD all day everyday as Ken Liotti said it is great to see how they treat him and he loves it. Tonight when they were leaving MikeyD looked at his sister Julia as she was saying good bye he took his right hand and moved it kind of like he did that day in CHOP when he blessed himself he first touched his eye lid with his finger after that he pointed to his heart and then he pointed to Julia after that he did the same thing to his sister Ciara it was really powerful !!!
Please keep praying and posting.
Mike and Moya - Remember, no body knows MikeyD like you two do ... so don't be afraid to ask ANY AND ALL questions that you have. And make a list of them ... it's so easy to forget when you're sitting with lots of experts and they are all talking. I forget to ask stuff even when I'm well rested and under NO stress ... so write everything you want to ask down. I bet you already have a list.
ReplyDeleteThe story about Mighty MikeyD telling his sisters I LOVE YOU made me cry tears of joy this morning! You have amazing kids!! Thank you for sharing that.
We continue to pray for MikeyD, you, and all the doctors and caregivers! I hope you have a satisfying and productive meeting today.
With prayers, love, and healing, positive energy,
Barbara, Bob, Bobby and Allie Cassin
Please ask the doctors to pursue genertic testing. It may be that Mikey has a mutation that will be healed with Enzyme replacement theropy. But can only be detected through genotyping.
ReplyDeleteIn box me at AMEarle@amicusrx.com for more inquiries.
OUr family keeps praying......
AnnMarie Earle
Telling his sisters I LOVE YOU that way!! The LOVE that a Dad and Mom with the help of God of course..created..Mom and Dad You guys must be so in awe of the LOVE..I know I am..May our beautiful MikeyD continue to keep on finding new ways to say I Love You until his sweet voice comes out again...Please Lord..we want to sing Your Praises with MikeyD...Let him use his voice...Let MikeyD sing Your Song...Please Heal our MikeyD..You are the Great Physician..Your our HOpe and You are the Healer...We come to You Lord...and we Thank You Lord for all these gifts..for the I Love You sign language..mostly we thank You for the gift of Life in MikeyD..Thank you Lord!!! Please let MikeyD know we are all here praying for him..Give him kiss for me!! Thank You Lord and please continue to keep Healing our MikeyD!!
ReplyDeleteMike & Moya,
ReplyDeleteWe're praying for you all daily and most off praising our Father in Heaven for his blessings. I really believe that MikeyD is going to be on the court again beating up CJ and others in a game of knockout. I agree with your feeding tube assesment. I'll be praying that once that is out one great stride after another just keeps coming. MikeyD is blessed to be alive, he has his thoughts, incredible family, incredible health care. I think he's just going to surprise us all daily with his will.
God Bless you all and may he bring you the comfort that only he can bring.
Jim, Cindy, Evelyn, & CJ.
Father Jeff said we are having another Healing Mass on Friday November 2nd at 7:30..Mary Mother of God Church..where we will again come before Our Healing Lord and pray for our MikeyD...All are welcome..Please come and pray for MikeyDs complete Healing..Come pray for MikeyD to speak again..come pray for Our Healing God to Continue to Heal our MikeyD
ReplyDeletemaybe this would be a good time and place to pick up the ribbons braclets and tshirts etc in the Narthex after the Mass?
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