Tuesday, January 02, 2007

Wes is growing happily. He is very busy scooting all over the house, a commando crawler. Two days ago he pulled up and held on with one hand. He got a little excited with his accomplishment and started celebrating too soon. Down he went. These wood floors don’t give. Joey may denied it, but he is also saying mama.
It has been sometime since I have posted. Actually discussing and verbalizing Wes’ surgery plans has been a reality that is overwhelming.
Please respect that this is also a very scary time for Chase and Brandon. They are both processing information at their own level. We prefer that no one discuss anything with them. We have only given them a vague explanation that is appropriate for them. They are not able to explain anything or answer questions.
Wes is now being followed by an Endocrinologist, Dr. Wright in Tallahassee. The only concern on Wes blood work results were his growth hormone level. He spent the day in the hospital for a growth hormone stimulation test the first week of Dec. Because his blood was sent to California, we will finally get the results Thursday. This is something that can be treated, but unfortunately with daily shots of growth hormone. Hopefully everything will be fine. I also monitored is blood sugar, but that has been normal. His hormone levels will be monitored periodically as he grows b/c his pituitary gland is involved in this defect.
We have scheduled Wes’ surgery for Jan 22nd at Children’s Health System in Birmingham, AL.
http://www.chsys.org/
Wes will be followed by the Craniofacial Team there. I found these doctors through a mother whose 19 month old son, Eli, had this same surgery 6 months ago. They are live in Lee Summit, MO, and have also searched for the most experienced neurosurgeon. Ironically Wes’ initial appointment was 30 mins after Eli’s. We were able to met Eli, his mom, and grandmother. He was being chased by his mother, running and laughing as we walked into the clinic. Seeing Eli brought me such a sense of peace. Wes’ neurosurgeon, Dr. Jeffery Blount, will be assisted by Dr. John Grant, plastic surgeon. We will travel to Birmingham Jan 5th for Wes’ pre-op to discuss the risks and specifics about his encephalocele surgery.
Continue to keep Wes in your prayers. We are surrounding our boys in love and positive energy.
Thank you all for the prayers, support, and uplifting thoughts.

1 comment:

Anonymous said...

Gina, Your page is so wonderful! What a beautiful family..Wes has been a source of inspiration for me since the 1st picture you posted on the smiles site..I love your quote how life is a shared experience..I try to do that with Ella as well..Whoever will listen to our story, who will look at her pictures, and share her progress..That little man has touched so many hearts and you know you all are in our thoughts constantly..He really is amazing! ~Kerri