Sunday, August 31, 2008

Here I sit in front of my home computer with a little sleepy guy in my arms. Feels so good to be home...even more amazing knowing my baby boy is over such a huge step. Before we left for Chicago, Wes told his brothers his palate was in Chicago. Now he is at home with his palate. He is eager to try it out with food, but then changes his mind as the food gets close to his lips. Still a little nervous, but yesterday had his first melted popsicle. It was frozen when I gave it to him...just took awhile to work up the courage to put it to his mouth. Guess you could say we are both a little nervous. Baby steps to keep my baby healing and away from hospitals.


video

Wednesday, August 27, 2008


Wes is recovering well...issues with pain only during the night and first part of the morning. He has been making sure everyone on the second floor knows his pain. Once he is up and out of the funk of the morning, he is full blast.

We had a disappointing appointment yesterday...3 hours and we never saw THE DOCTOR. After a 2 1/2 hours waiting we did see the resident, Dr. Kim, who was in surgery with Dr. Vicari. There really seemed to be no other options as Dr. Vicari was leaving to visit his son today and I want to speak to someone who was involved in Wes' surgery and needed to know how his palate was healing before leaving. He said that Wes' repair looks wonderful! No area of concern at this point and everything is healing nicely. This doctor was very thorough and explained things well, but after traveling from Florida to Chicago for a surgery that was strongly stressed to be done by this specific doctor who knows the complex details of my son's extensive medical history...Joey and I were very disappointed and aggravated to say the least. For a little guy, Wes has HUGE medical file!

This morning I received a phone call from Dr. Vicari on his cell phone, as he was on the way back into town to see Wes. He was very apologetic. It appears the first receptionist failed to page him before she took her lunch break and it was only after we complained two hours later that he was paged. (after he had already headed to clinic in another town)

He also feels great about Wes repair. His repair and the incision to relieve tension are healing nicely. No signs of fistulas! Wes sounds very nasally right now, which Dr. Vicari reassures us is a good sign for a cleft palate repair. He is having some difficulty breathing at night, which is somewhat to be expected with the swelling, but also likely to be an issue after the swelling. Next step would be to open up his nostril. This should really help his breathing. As of right now, he is trying to breath out of his nose which is blocked by a deviated septum on his open nostril and obstructed by a collapsed nostril on the other side.

I will post some pictures later. Wes has found a little g-tube buddy, Cooper. They have been keeping the playroom busy. I will try to post some pictures later. For now here is him and his Diego. Sure Libby Kate hopes his Diego will keep him from snatching her Dora, but then Diego might need a friend!!!

Sunday, August 24, 2008

Quick update...Long day yesterday for our little man. He was up after a dose of Tylenol w/codeine for about 30mins to play w/ his Chicago buddy. After she left his little mind and heart want to stay in the playroom and play, but his little body needed a rest. He was determined to stay, but stopped for a second to lay his head on my leg and almost immediately was out. He spent the rest of the day sleeping. At this point rest is good, sleeping through the pain and allowing his body to work hard healing.
Today he started the morning with a little fever, but a dose of meds and a quick nap gave him a little burst of energy. He was up and colored a picture. Finished his first picture and has now started throwing up. Back to resting for now!

Friday, August 22, 2008

Surgery went very well. Slow update with my arms full of love trying to comfort my little man in anyway possible. Wes is sitting on top of Chicago in the 9th floor, but not feeling on top of anything. Poor little guy is swollen and hurting. He has slept most of the day, which is good. Typing this with one hand as the other is clutched by my precious boy. Good news is Dr. Vicari was able to close his entire palate and do some work on his gumline. How much will remain a mystery until Wes is ready to show us.

Here are a few pictures. No they are not fun glimpses of the day, but just to let you know he is out of surgery and on his way to recovery. If you know Wes, you know why I had to share this picture. No matter how his day is going, he is going to kick his little arm back to relax. Otherwise his awake seconds are spent watching BuzzLightyear and LigthingMcQueen.
This morning after Wes was finished looking at his book, we looked through my camera. He loves looking at his family and friends, but you can imagine his favorite person to see Wes. He has decided that he is not Weston, just Wes. Thought I would post a few pictures and a video of things he would rather be doing right now. Wes went back around 9:30am and surgery should take about 2 hours.


video




Thursday, August 21, 2008

Here I sit the day before a much anticipated surgery. Looking back on October 12th 2006, when Wes' palate repair was originally scheduled, I thank God I did not know all that was to come. Even though I can remember those late nights during my pregnancy and during Wes first year, wishing I knew what was to come, what the future held for my little man...a fast forward button for life. Now I realize it is little by little, day by day we face challenges and overcome. It is not the whole picture, yet the here and now that we rise above.
Wes was such a little ham today. He hopped around the hospital with his cute one leg tigger jump, talking and flirting with his nurse. She said he was the best little patient all day! Of course he was, that is my little man, full of personality, joy, and love. He seems to have a beautiful gift bringing this to those who meet him.
Tomorrow is huge day for Wes. More than a surgery, a huge step that will open doors for him. Dr. Curry wants a picture of him eating his first cheeseburger...how amazing this surgery will be for him in so many ways. To actually give him food and drink and not fear every moment that he will aspirate and end up back in the hospital and to hear his new little voice. Today I teared up buying him a shirt with a sippy cup and the words "half full". We have been asking him where his palate is and with that precious little voice, he says, "in Chicago." Tomorrow Dr. Vicari will give Wes his palate!
There is really no way to explain the emotions I am feeling. Ironic a year ago this very month Wes faced a huge surgery and yet somehow now we ride such a different roller coaster of emotions. The tears that have filled my eyes so many times these past few days are mixed with joy, excitement, pain, fear, anxiety...all in view of what has passed and what is too come. Today looking back, I am in awe at God's power. He has brought us through and filled our lives with love and support I never could have imagined.
Surgery time is at 9:45am, again I ask that you wrap him in a warm, soft, blanket of love and prayer.
A little trip in the rain today!