Sharon and her Great-Uncle Fred 

still here!

Hello all...we couldn't resist showing you how she's grown. The pictures were taken by RJ's best friend and his wife (lauraguttingphotography.com). They are wonderful to have!!!
Sharon had a follow up at the NICU last week and was assessed by a physical therapist, nutritionist, and neonatal doctor. She weighed 8.5 lbs and is now 20 inches. The doctor and PT both recommended that she begin PT now so i'm in the process of setting that up. I think (and they agree) that her right side is weaker than her left, although when she starts kicking she is mighty strong! I'm curious to see what PT will have us do with her...
Sharon got to meet her Great Uncle Fred this weekend (among other wonderful family and friend). They hit it off and Sharon was never more rested and calm then when she was in Fred's room chilling out (she loved his bed which hums and is nice and warm). It was very special for all of us to have the two of them meet. Fred said "I feel like i was with Sharon in her hardest moments....she and I have really been through it, haven't we?"
Thank you for wanting us to continue with this site....it means so much to know that folks are still checking up on her...
love and bless
Jaye (and RJ and Sharon)

hanging out :) 

Happy baby 

Daddy's girl 

Isn't she lovely? 

THank you

Hello all
I think i will put up a last post for those of you still checking this page...there is no new information and we are just enjoying Sharon immensely. We won't go back for a repeat MRI until November, and if all goes well we won't go back to the neurologist until July.
She is learning what night time means (sleep) and is taking great naps during the day as well. It is nice to be settling into a bit of a routine with her and she seems to enjoy her life as well (except for baths...). She is just starting to smile (at her cousin Rose and her Pop Pop...mom and dad will be patient!). She has gotten a lot bigger (i'm guessing she's close to 8 lbs at this point). She loves to kick her bare feet and also loves to be outside. She is very social and does best when with a lot of people. Being in the hospital got her used to noise and commotion so she is not easily startled which is nice. She doesn't seem fazed by the dogs and cats, even when the cats try to cuddle with her by sitting on her (don't worry, we don't let them!)
She actually just woke up so i have to go and see how much cuter she got while she was sleeping...
thank you all for your continued prayers and support. We are grateful to have friends and family like you and are so glad that Sharon will grow up surrounded by such love!!
God Bless
Jaye (and RJ and Sharon)

Good afternoon. I just have a second to give a quick update before Sharon wakes up...
Today was our appointment with the neurologist at Brenner's Children's Hospital, a man who we have been told "wrote the book on infant strokes." He was a very kind doctor, with a lot of information, and who agreed with all of us who think that Sharon is acting just like a newborn should be acting. He explained in detail how strokes occur in babies (Sharon had a blood clot which went directly to her brain becuase she was in utero at the time and not using other organs that would often intercept clots). It seems that there were at least two strokes, with one causing most of the damage. In time (six months or so), we will take her to a hematologist who will test her for any clotting disorders, but this is not a big concern at this time becuase of her age and size.
We now have been to two neurologists, and received two very different opinions, with the one today being much more positive. Still a primary concern is the possibility of a seizure disorder, but which may not show itself for many years. We are going to begin to wean Sharon off of the medication that is to prevent seizures (but which is also sedating her, yuk). If the seizures are going to show themselves in infancy, we'll see them soon as the medicine wears off. And if not, then we wait and see if they ever develop as she grows. If they do develop, we will deal with them at that time. The doctor doesn't see the need for her to be medicated unnecessarily (and we heartily agree).
Of course, we still don't have answers about her neurological development and the extent of any brain injury. But, as so many of you have told us: the infant brain is amazing and can bounce back from damages that adults could never cope with. Today's doctor reiterated this to us and we are going to hold out hope that Sharon's brain will compensate for lost cells. She is presenting just fine at the moment, with good muscle tone and range of motion and we will just pray every day that she continues to grow and be strong. At this point we just wait and watch as she approaches each milestone to see if she reaches them...RJ and I feel safe saying that we are cautiously optimistic...and VERY grateful for prayers that have already been answered and for all of the doctors and nurses who have examined and helped Sharon thus far.
Thank you Thank you Thank you...we feel very loved and supported by all of you.
God Bless
Jaye, RJ, and Sharon