Thursday, February 14, 2008

Happy Valentine's Day!

Well, I am once again on ACTH injections and it's no fun at all. My spasms returned last week and they were making me really unhappy. I know that Mom and Dad are keeping their fingers crossed that it works this time as there is no "third time." I am on double the dose that I was before, but on a shorter course. I have been out of sorts the last two days, especially an hour or so after my morning injection. I will be done with this second round on March 19th - a day before the first day of spring. Mom and Dad say that I've got so much to look forward to and to experience out in the garden come spring - the birds, the scents, the herb garden, the fresh soil, the cool grass, walks down to the beach. Spring will be a good time for all of us.

I wanted to share the link for my friends who taught Mom and Dad how to give me extra food by tube. Tobin has been through so much and is such a strong little guy. I hope to spend time with him once spring arrives. Mom and Dad say we are so grateful to have so many caring people, such as Tobin's parents, in our lives.

http://www.triciakurtzman.com/Tobin

Mom and Dad continue to take photos and video... I keep telling them that I'm not a huge fan of being caught on camera, but they just keep gettin' me on film. Check out my sweet gecko shoes from my Great Aunt Lei Ann. I've worn them several times the last week and have received so many compliments. And the yellow bath towel is from Grandma and Grandpa Chalupa. It is so nice and soft and feels so good on my skin! Cousin Tiffany (and Jamie and Evan) sent me some totally rad Valentine's Day bibs which I haven't yet had a chance to try out. I think it is okay to celebrate Valentine's Day over the course of several days, and I plan to test these bibs out in the next few days. Stretch out the looooove - that's my thought. My new dog friend, Dutch, is a hoot. He loves to cuddle - with me, with Siva, with anyone really... he totally digs Dad's lap.






Happy Valentine's Day!

Love, Owen

Monday, February 11, 2008

Tubes and smiles.

We finally made the difficult decision last week to begin using a feeding tube for Owen. The NG (naso-gastric) tube slips through one nostril and ends up in the stomach where it deposits the much needed calories. It is not a permanently placed tube and we have been trained on both removing and replacing it. It is pretty benign and seems to be working exceptionally well for Owen.

We have tried so hard to get Owen the level of nutrition he needs, but always fall just a few ounces short most days. Our pediatrician, Dr. W., connected us with a wonderful woman on Bainbridge Island whose son developed a serious heart condition at birth. At seven and a half months, he just graduated from the tube. From what I understand, his survival is also a miracle. His mother had extra supplies and wanted to provide training and support to another set of parents in need. It was such a generous act of goodwill for Dr. Walters to arrange this and introduce two sets of parents going through similar struggles. I cannot say enough great things about the level of care Owen has received from Dr. Walters and the staff at Bainbridge Pediatrics.

Owen now gets slow "drip" feeds through the tube during the night and during the day, is fed mostly from his bottle. We were told that it was probably the case that Owen had developed a major aversion to bottle feeding as he knew that only led to vomiting and that when not forced to take more than a couple of ounces at a time, something he can comfortably handle, he would again readily take the bottle. This has happened and we are keeping our fingers crossed that this continues.

Owen now sleeps more soundly, is getting the food he needs and the quiet naps he needs, is not constantly plagued by the fear of losing his food and we have substantially more flexibility in our lives, not having to hold Owen upright for hours a day after feedings.

The even better news, in my humble mommy opinion, is that we are getting more and more smiles and some that seem to be purposeful - an expression based on positive feedback. Owen began experimenting with smiling a number of weeks ago. We've been told by our various support folks that this is a built-in expression in infants and that for most babies, it is reinforced by the visual queue of parents smiling back. In Owen's case, we cheer and laugh and squeal with enthusiasm. Sunday morning, he was smiling and smiling and smiling for Kelsey and I as we cheered him on. The same thing happened this afternoon for Grandma Janet and I...

video

Owen will be seven months old on Wednesday. It so good to finally see a smile on his face.