Keane's car seat straps in perfectly to the bike trailer.
Finally some fresh air!
Tuesday, August 7, 2012
Kids playing....
Sister's here to play! Watch out!
Oh, geez. Where did she come from?
Ah! Here she comes again!
Wednesday, August 1, 2012
Oh, Geez. ... 15 days to go
Yesterday I took Keane in for his weight check. I was wishing, hoping, praying for 12 lb and 2oz. I put him on the scale, it bounced around a bit, then landed at 12 lb. 7.5oz. What? Weight gain of two ounces per day is not really in the realm of possible. I suspect the scale I used on Thursday last week was wrong, that he did not really lose 3.5 oz in two days. I believe his weight gain has actually been steady all along. Oh, geez. All that worry and all for an error. At least it was an error in Keane's favor!
Saturday, July 28, 2012
Special request ... 19 days and counting
Some of you may have noticed I changed our blog title to Brighter than the Sun. On Saturday, June 16th, on the way to World Market to pick up a couple of supplies for Avery's birthday party, this Colbie Caillet song came on the radio. It had only been about 16 hours since learning about Keane's heart defect and knowing that he had to have open heart surgery in order to live.
Music is powerful. Research suggests children who have familiar music playing while in recovery - especially in places like the ICU - have less anxiety. Every day since June 16th we have played Brighter than the Sun for Keane. Many of you know how much we like to dance. Just about every day we have our own version of Owen Dance Party. Caillet's song now makes Keane smile and calms him when he is fussy. He knows the song and he loves it.
If you haven't heard my chosen theme song for Keane, I've included a version with lyrics. However, this is our only Keane theme song. I am sure the Peds ICU and Med/Surg floor staff would appreciate some variety, as well as our family. So, my request to you:
Music is powerful. Research suggests children who have familiar music playing while in recovery - especially in places like the ICU - have less anxiety. Every day since June 16th we have played Brighter than the Sun for Keane. Many of you know how much we like to dance. Just about every day we have our own version of Owen Dance Party. Caillet's song now makes Keane smile and calms him when he is fussy. He knows the song and he loves it.
If you haven't heard my chosen theme song for Keane, I've included a version with lyrics. However, this is our only Keane theme song. I am sure the Peds ICU and Med/Surg floor staff would appreciate some variety, as well as our family. So, my request to you:
Please reply to this post with the name of the song and the artist that you believe reflects a good theme song for Keane - one that he would enjoy listening to during his hospital stay
Keane's uncle James (Erin's brother) has agreed to help load our song and yours on an iPod. We need the songs soon, so we can start dancing to them and playing them at home. It's important the songs are familiar. We have only 19 days and counting...!
Avery milestone... they look like people!
This is Daddy and Grampo outside their tent (they went camping last weekend).
Avery says this one (above) is her.
The circle is their campfire.
The artist forgot to sign her work.
Cruising big boy style
Good news followed by another weight disappointment!
Tuesday afternoon I wrote about Keane's progress and normal weight gain. However, when I took him back on Thursday morning for a weigh-in, he only weighed 12oz - a loss of the 3.5 oz gained the prior week. Mega bummer. Dr. Bob let me feed him and weigh him again. He gained 0.5 oz after I fed him. Dr. Bob said we could take 12lb. 0.5oz as his official weight.... but it didn't make me feel that much better. Nothing changed in 36 hours. What a roller coaster!
Baseline Assessment Results
It's been a really busy week at the Owen house. We have plenty of preparation and things to cross off of our list before Keane's surgery (19 days and counting). Last Tuesday, we were able to squeeze in a baseline assessment with the Co-Director of Early Childhood Cares (EC Cares). EC Cares is a program of the Child Development and Resource Center at the University of Oregon. Val came to the house and assessed Keane's current developmental milestones and skills. He sat up, rolled over, grabbed toys, made eyes follow objects in a circle, played with his toes and demonstrated our best Super Man impression (for head control), among about a dozen other skills. Drum roll....
Keane is currently keeping pace with his peers. As of today, the limitations on his abilities that can be attributed to Down Syndrome are "very mild." In fact, his development is currently "normal." It's pretty funny to see a baby the size of a three month old doing some cute "big boy" skills.
Now that's great news.
Keane is currently keeping pace with his peers. As of today, the limitations on his abilities that can be attributed to Down Syndrome are "very mild." In fact, his development is currently "normal." It's pretty funny to see a baby the size of a three month old doing some cute "big boy" skills.
Now that's great news.
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