Saturday, March 8, 2008

"Hope is not blind optimism."

Says Barack Obama...

We had a great visit this week with Dr. MacLaughlin, a neurodevelopmental pediatrician at Children's Hospital. He said based on Owen's MRI, which had not been so carefully and compassionately reviewed with us, image by image, until this visit, that he "expects Owen's vision will improve." He also said that children like Owen require even more calories than "normal" babies as they are not only trying to grow, but trying to heal, to recover from an injury. He has over 35 years of experience in his field and said he's seen so many parents struggle with "the tube decision." He encouraged us to have hope - for many things.

We have decided to move forward with a G-tube (tube inserted directly into the stomach), which will be placed sometime in late March. The NG tube is a temporary solution, and is working great, but has its disadvantages. With a G-tube, Owen will hopefully take better to solid foods and will have less discomfort than that associated with the NG tube. He is fattening up and the tube has almost entirely eliminated the vomiting. He is even more adorable with healthy amounts of sweet, sweet baby fat.

We have been very sleep deprived the last three weeks... So many of you have emailed asking about Owen - I'm sorry to have dropped off the blog-o-sphere. We appreciate all of you making the effort to stay connected. After a slow process of elimination, we determined that Owen was awake and very agitated (screaming) almost every hour during the night these long three weeks due to the Zonegran that he was taking for seizure control. We now give this to him in the morning, instead of right before bed as had been prescribed. We are all now sleeping soundly.

Owen has resumed experimenting with smiling and does this repeatedly each day. It makes our heart melt each and every time. He is now also cooing and making noises, especially during the night. It makes Kelsey and I laugh with joy, even at 3:00 am. He is in his last week of the ACTH injections.

Life seems to be somewhat normal for us - something that was hard to imagine even just a couple of months ago. There are no crises. No emergencies. No seizures. We all know and understand each other and there is no longer any guessing as to what might make Owen happy or content. He enjoys the sounds of the garden and the warmth of the sunshine. And Kelsey and I enjoy cooking in the evenings - really cooking - wonderful dinners each night. We are getting out into the garden (our kale, lettuce and radishes are up), are doing some additional landscaping in our yard - moving soil, digging in one-man rocks, terracing new vegetable beds. Our garden this year will include a melon patch, a sweet corn and sunflower bed and a section of garden with trellises for sugar peas, pole beans and cucumbers. We are making plans for travel this summer and are feeling overall more settled. Owen and I spend many of our early mornings, laying in bed, snuggled up together with me appreciating the last vestiges of his babyhood, knowing that these will soon be memories, as are, already, so many of the experiences we've had with him.

The photo below was taken on a recent walk to the beach to observe the lunar ecplise. Ahhh, the beauty and the wonder.

2 comments:

karengberger said...

Thank you for this posting; it makes me so happy. I am grateful for the progress you shared, the help you are receiving, your awareness of blessings and general joy in what IS.
Sending loving good wishes to all of you,
Karen

Morag said...

SO great to hear you guys are doing well. I continue to think of your all frequently, please kiss those precious toes for me.
Xx Louisa