Friday, July 27, 2007

Tonight at the Ronald McDonald House, tomorrow night Children's Memorial. His MRI and Stealth CT Scan are scheduled at 1:30pm, after which he will be admitted. Long day! Nothing to eat after midnight. Yeah, tell that to my little 6am breakfast man.
Enjoyed a day at Navy Pier today with all three boys and our friends here in Chicago. Chase and I rode the Feris Wheel and saw the beach on the lake! Beautiful blue water. Wes and Rebecca danced for a band on Navy Pier. Such little charmers, the ladies brought them each two leis, all eyes were on them. He loved the loud music. Care free and loving life. His positive energy is so lifting.
As Wes' surgery draws near, I ask you to surround him in love and lift him up in prayer. In your mind and heart wrap him in a blue blanket of love. He will find safety and strength in the warmth of the the love that surrounds him.

Tuesday, July 24, 2007

Flights have been scheduled and doctors have all given clearance for Wes' surgery. Joey, Wes, and I will fly out July 30th. Wes will be having a MRI, CT scan, and some other test before surgery. He will also be seeing yet another ophthalmologist for pre-surgical evaluation and post evaluations. I would absolutely love to get some answers about Wes vision, but not setting my hopes too high, three ophthalmologists later. It would be nice if this doctor has some experience with children with nystagmus and midline defects such as Wes.
Months ago when, I was making this decision, I felt as if my heart would literally stop. A friend emailed asking about living with the decision of Bowman vs any other neurosurgeon, regardless of the outcome. I knew that Bowman was the doctor for Wes. After wards there is no going back, wishing I would have done this, researched that, or gotten on that plane and taken my baby to Bowman.
Last night Wes breathing sounded very familiar. An unnerving familiar! Opened up his little mouth and there was this purplish tissue, protruding through his palate again. Heard this gurgled struggle before about two weeks ago only to find what Wes' ped and I feel is his encephalocele. Although it is not a significant amount visible, it is enough to make my heart stop, enough to make me grateful that the wait is coming to an end.
This journey has lead me to knowledge and strength I never imagined, yet it has also filled my heart and mind with fear. Knowing that Wes' neurosurgeon is making all of these detailed preparations and arrangements is so reassuring. She will get final scans just before he goes into the operating room. I have confidence in her skill and ability and find such peace in knowing that Dr. Bowman will be caring for Wes.

Thursday, July 12, 2007

Wes' surgery was confirmed today for August 3rd by the ENT. When I called again last week for confirmation from the neurosurgeon, I discovered she and her nurse were out on vacation until July 16th. Wow, we have an entire two weeks to prepare. If you are interested in updates I added a feature to add your email address and get a notification when there is an update to his blog. Although I can not imagine there will be much time for updating, I will "TRY" to update his blog occasionally after surgery.
Tuesday was Wes' endocrinologist evaluation with Dr. Nancy Wright in Tallahassee. She again discussed the diagnosis of
Septo Optic Dysplasia and the possibility of hormones deficiencies due to the involvement of his pituitary gland. His past two urines were very diluted, so he will be evaluated once again next week then there is a possibility of a water deprivation test. This will test for diabetes insipidus. NOT diabetes mellitus, or associated to blood sugars. Diabetes insipidus is when the pituitary gland does not release an anti diuretic hormone.
As of now Wes' hormones are all normal, with the possible exception of this anti diuretic hormone. He will need to be evaluated every six months, as it is possible that as he grows his pituitary gland will not be able keep up with his body. His pituitary gland did not develop correctly and there is also a cyst present in that area. His age has made it difficult to fully assess his pituitary gland through MRI’s, so the details we have are inconclusive.
The next two weeks are going to be full, preparing for Wes' surgery and lots of appointments. On an exciting note, Brandon'
s birthday is July 25th!!!

Nothing beats a good day at the beach (with Cheetos)!!!

Monday, July 09, 2007

Oh yeah, totally boy here!!! Wes has learned how to crawl and the higher the better. Like climbing on top of the table in not enough, he needs to stand completely up and reach for the sky. Mostly he is just crawling to places that let everyone know he is a big boy. His favorite place is the couch, just to sit by himself, like the big guys do. Well today the couch was a little bit bigger than he was and he took a bump to the head.
The moment I picked him up all I could see was a major EGG!!! A few seconds later he was all smiles, sporting a diaper and first of many adventurous discoveries.
Just in case you had any doubt about how tough this little guy is!