Thursday, 3/17/05Happy St. Patrick’s Day to you!
Sorry it’s been so long without an update. Life is moving along around here at a far more rapid pace than in the past. Les is doing great! And we are all transitioning back into a “normal” schedule. You know, like cleaning the house on a regular basis, grocery shopping, laundry, schoolwork, yard work, church volunteering, etc. My I forgot how busy one could get when they concentrate on more than one thing at a time. Thanks to everyone who allowed us to NOT have to concentrate on many of these mundane items while Les was in treatment. It took me awhile to get used to shopping and cooking again, but I have actually enjoyed it lately.
I guess you all want an update on how Les is doing. He had his monthly clinic visit yesterday, and if the amount of time spent with the Dr. is any indication of severity of prognosis, we’re in the clear. The Dr. was in the room for less than five minutes and besides listening to Les’ heart and lungs, the most time was spent on filling out the paperwork for the next MRI to get scheduled.
Here’s a recap of the last couple months:
January 31, 2005 – Les’ g-tube was removed. It was a bit of a surprise to us because our appointment was for a consultation and we expected to have to make another appointment for the actual removal. The doctor looked at him, asked me a few questions and then said she could take it out right then. Well, not knowing what I was getting into, I said yes and it was done in a blink of an eye. No surgical procedures or anything. It was held in place with a catheter like balloon and she just deflated it and slipped it right out. The hole that was left was about 1/8” in diameter. She placed some gauze and some tape over it and sent us on our way saying to change the gauze when it got wet.
The appointment was in the late afternoon, so we went to grandma’s for dinner and to wait for the traffic to subside. At grandma’s the gauze needed to be changed every 10 minutes because he just kept leaking. At grandma’s suggestion, we upgraded the gauze to a cut up maxi pad. It lasted about 20 minutes and I’m trying to figure out how we’re going to make it an hour in the car for the drive home. My mom came to the rescue with a diaper. We cut that up and it worked great.
The next few days, I kept it covered with a diaper section and then it closed up sufficiently to go back to using a gauze pad. It has yet to close up completely and so we have a surgery scheduled for April 14th, 2005. If the hole closes up by itself by then we can skip the surgical procedure to close it up. However, the Dr.’s want to have Les’ port removed to limit any sources of possible infection. So, we are going to do that on the 14th of April anyway and add the g-tube closure if need be.
It’s interesting living with a son who has a tummy leak. It has made for a few comical experiences. One of which was when Jason and Les were eating dinner (I was off somewhere) and Les finished up with a nice glass of chocolate milk. After dinner, Les wanted to learn how to turn the new under counter lights on in the kitchen. They require just a touch of your finger and they switch on and off. Well, Les stretched up to reach the light and suddenly had chocolate milk spilling down his pants. Jason and Les laughed it off and Jason commented that Les had proved he was “full”.
Well, enough g-tube stories. Les has also been going to Round-Up HOPE on Saturday mornings (when it’s not raining). This is the therapeutic horseback riding lessons that we tried to get him into last year with little success. Well God provided scholarships and grandparents to fund it for 6 months. YEAH! Les enjoys his time on the horse and it’s just one more way of providing opportunities to strengthen his body.
We are also really close to being able to transfer Les’ school therapy contract over to the lady who is qualified to do hippotherapy – Physical Therapy on horseback. Her company is now in Temecula and offers both PT and OT services. Not all sessions would be on horseback, she is also willing to do pool work, meet with us at home, parks, etc. She’s wonderful! Please pray that we can transfer to her soon and not have to wait till the next school year.
Speaking of school, Les is doing great! He is excelling in Phonics and will be moved ahead to the Advanced 1st grade curriculum as soon as we get it. The other subjects he’s doing well in also.
Oh, I almost forgot the most recent wonderful news. Les had a birthday on the 14th. He’s now a big six year old and requires two hand to show you his age. We had a big party on the 5th in conjunction with cousin Jazzy, who’s birthday is on the 8th. All the family joined together at Aunt Joanna’s and Uncle Billy’s for a wonderful day of bouncing on the trampoline and eating and opening presents. Then on Les’ real birthday, last Monday, we took him to LEGOLAND! Les rode his first rollercoaster, drove a small car on real little streets and received his LEGO drivers license and just plain enjoyed a beautiful day. We had mommy, daddy, Les, grandpa Martin, Nana Vicky, and great-grandma Amick with us. The things they can make out of LEGOs are amazing!
Well, that’s enough for now. I’ll update again in a month or two with the outcome of the the surgery and next MRI.