Tuesday, December 8, 2009

You Take the Good....

Well most people finish that sentence with ....the bad. But today I feel like we got more good news than bad, so I am taking the good and leaving the bad for another day, heck another year! First Steps came to the house today to evaluate Keegan for the possiability of early intervention (therapy; wether it be Physical or Occupational). All in all I was very pleased with the result.

The ladies that came to evaluate him tested him in 6 areas. They compared him to his adjusted age of 1 month versus his actual age of  2 months 2 weeks. They do this simply because he was 6 weeks premature.  He did really well in most areas; he has started to track faces and toys, he has started to coo and he will look at your face while you are holding him. They are a little more concerned about some of his gross motor development.  He tends to move his right side a little more than the left and he tends to look to the left more so the right side of his neck seems a little more tight. So the ladies went ahead and recommended that he receive therapy from either a PT or OT, my choosing.  The ladies want to make sure that if we are facing any sort of delay  associated with SGBS that we stay on top of it because he will having a better chance at normalcy (although who or what is normal-what has made us define normal? That is a different blog for a different day!).  So I am very excited about being proactive! All I have ever wanted and will continue to want is the best for him-like every single mom out there!

I also go a call from Sara up at Riley today. The minute I heard that ring tone my stomach dropped like on a roller coaster! I had every thought rushing through my head at once. She called to let me know that the Gastro doctor would like us to get a CT of his Chest, Belly and Pelvis with contrast. We also briefly discussed the peditrician issue. Dr. Walsh has recommended Dr. Crecelius, he did his fellowship up at Riley. I hung up from that conversation feeling decent, not really negative, not really positive just so so. A couple of minutes later Sara called me back she scheuled our CT for Wednesday the 9th and said I could call and reschedule if that didnt work out because she had to go ahead and make an appointment to get me in the computer. I then also asked her about the CT of the head that was taken last week. She let me know that there is still blood on this brain, sometimes it takes awhile to be reabsorbed but there was no more fluid on the brain and that is what she was most worried about. 

I also shared and interesting revelation that my dad had shared with me over the weekend. One of my grandfather's brothers was born with an abnormally large head and he actually had webbed fingers and toes. I had never known this and it intregues me! I need to call them and start asking some more questions. Everyone it seems like is trying to help us put the puzzle pieces together. They are thinking back to relatives and things that have happened in their own lives to try to make sense of the fact that this could be something passed from generation to generation.

Speaking of genetics, I asked Sara about Ryan and I getting tested to see if we are the carriers of SGBS.  She said because Keegan is a patient of Dr. Walsh's and Dr Walsh is a genetisist that he will most likely test us when we are ready (I am scared at what they are going to find to be quite honest!). We are getting tested sooner than later so that we can be sure that if we have another child that we will/will not pass this on.

I really appreciate all the thoughts and prayers everyone is sending our way! We can feel it and can only hope it is helping our cause! And here is an updated picture of our precious angel!


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