Sunday, September 30, 2012
Is this marketable?
We made ribs the other night. Avery asked for a kabob stick for her rib. Brillant!
Whirlwind week
I know, more than a week since our last post! I've got you in the habit of looking, only to stop the frequent updates. This past week has been a whirlwind of changes at our house....
First, Nanny arrived last Friday. When we learned of Keane's heart condition, Nana (Ben's Mom) had asked when she should come from Colorado for a visit. The answer was so obvious to me - when I go back to school at OSU. The commute is 50 minutes each way, plus classes from 12p - 450p on Tuesdays. Back to the grind for a Mom who before last Friday, had only left Keane for a maximum two or so hours. So, we practiced on Friday. I had a meeting on Campus from 10a - 12p; that's four hours - half of what we would need to endure together on the following Tuesday. The result - success. Keane lived, without significant stress, and thankfully since he now eats solid foods, I could rest assured he wasn't hungry. We had a relaxing and fun weekend...then our new Fall schedule, with both Avery in school and Mom in school commenced.
The days went by fast, too fast. Keane survived his long haul on Tuesday, then another five hour stretch without Mama on Thursday. Imagine, going from feeding your baby every hour and a half to leaving him all day. That's an adjustment! In the midst of surviving Week 1, Ben and I spontaneously decided to go to a Train concert after the kids went to bed, thus resulting in our first real "date night" in over eight months. I even have proof (see future posts).
This weekend we went to the Emerald Family Down Syndrome Network's 6th annual Buddy Walk. Honestly, I wasn't sure what to expect or how I would feel. Only the day before, we met another 7 month old baby at the library's baby story time who was also "rockin' the extra chromosome." Before that the only person I knew with DS is a beautiful, independent, smart 22 year old. I guess I am saying with a sample size of two, I didn't know what I wanted to learn from attending the event. How broad is the range of disabilities? Would other families be willing to share their experiences? What experiences did I want to hear about? Could I just turn off my questioning brain long enough to appreciate and absorb the spirit, fun and community cohesion?
The event was great. I did turn off my brain and see clearly that a DS diagnosis actually opens us a whole new world of possibilities. I am not sure I can clearly articulate it yet. It's just a feeling - like opening up your soul to seeing the world differently.
So... we survive Week 1, filled with adventure, new experiences and old experiences, like actually spending time as grown-ups, without kids. Onto Week 2.
First, Nanny arrived last Friday. When we learned of Keane's heart condition, Nana (Ben's Mom) had asked when she should come from Colorado for a visit. The answer was so obvious to me - when I go back to school at OSU. The commute is 50 minutes each way, plus classes from 12p - 450p on Tuesdays. Back to the grind for a Mom who before last Friday, had only left Keane for a maximum two or so hours. So, we practiced on Friday. I had a meeting on Campus from 10a - 12p; that's four hours - half of what we would need to endure together on the following Tuesday. The result - success. Keane lived, without significant stress, and thankfully since he now eats solid foods, I could rest assured he wasn't hungry. We had a relaxing and fun weekend...then our new Fall schedule, with both Avery in school and Mom in school commenced.
The days went by fast, too fast. Keane survived his long haul on Tuesday, then another five hour stretch without Mama on Thursday. Imagine, going from feeding your baby every hour and a half to leaving him all day. That's an adjustment! In the midst of surviving Week 1, Ben and I spontaneously decided to go to a Train concert after the kids went to bed, thus resulting in our first real "date night" in over eight months. I even have proof (see future posts).
This weekend we went to the Emerald Family Down Syndrome Network's 6th annual Buddy Walk. Honestly, I wasn't sure what to expect or how I would feel. Only the day before, we met another 7 month old baby at the library's baby story time who was also "rockin' the extra chromosome." Before that the only person I knew with DS is a beautiful, independent, smart 22 year old. I guess I am saying with a sample size of two, I didn't know what I wanted to learn from attending the event. How broad is the range of disabilities? Would other families be willing to share their experiences? What experiences did I want to hear about? Could I just turn off my questioning brain long enough to appreciate and absorb the spirit, fun and community cohesion?
The event was great. I did turn off my brain and see clearly that a DS diagnosis actually opens us a whole new world of possibilities. I am not sure I can clearly articulate it yet. It's just a feeling - like opening up your soul to seeing the world differently.
So... we survive Week 1, filled with adventure, new experiences and old experiences, like actually spending time as grown-ups, without kids. Onto Week 2.
Thursday, September 20, 2012
Monday, September 10, 2012
Three-week post-op report
This morning, Grammy, Keane and I went to the Children's Hospital for our three-week follow-up with Dr. Kelly, Keane's cardiologist. We've learned now... although the appointment was at 930a, we budgeted until noon to be on "the hill." Yep, we were there until 1145a! It's such an event.
I have virtually no bad news to report for once! Hooray. Everything is great, or better than anticipated. First, Keane had two chest x-rays to assess his heart size and make sure he had no fluid in his lungs. He passed this test with flying colors. Next, we say Dr. Kelly's medical assistant to check oxygen saturation (= 100%), blood pressure (great), heart rate (also great) and an EKG (just ok). The EKG showed that Keane basically has an irregular heart beat. The electrical conductors that tell the heart muscles to contract are not really firing correctly on the right side. As a result, the right ventricle is not being told to contract by the right electrical current in the heart (those medical brains out there will recognize this as RBBB - right bundle branch block). For Keane, this is his new normal. It's not anything that needs treatment - the left ventricle current travels to the right side and like a Sunday drive in wine country, allows for the right ventricle signal to contract on a detoured current.
Keane will continue to take his Viagra for the next three months - until the beginning of December. However, the dose will not be adjusted for his weight gain. Consequently, he will be getting a decreasing dose over time. Dr. Kelly was not totally convinced that Keane has pulmonary hypertension; the RBBB can make the diagnosis of pulmonary hypertension less certain, he may just have a RBBB. The first or second week of December, Keane will return to Doernbecher for another sedated echo (which seemed like a big deal the first time, but a cake walk after surgery). Hopefully, he will get another gold star in December, wean off of the Viagra completely, and be an annual check up with the Cardiologist kind of dude.
Oh, I don't want to forget -- for those who have ridden the weight roller coaster with me..... Keane weighed 14/1 today. Yes, I did not mistype; he weighed 12/6 at discharge, that's about 0.75 lb gain per week since discharge. I'll make sure to post a picture tomorrow of his chubs!
I have virtually no bad news to report for once! Hooray. Everything is great, or better than anticipated. First, Keane had two chest x-rays to assess his heart size and make sure he had no fluid in his lungs. He passed this test with flying colors. Next, we say Dr. Kelly's medical assistant to check oxygen saturation (= 100%), blood pressure (great), heart rate (also great) and an EKG (just ok). The EKG showed that Keane basically has an irregular heart beat. The electrical conductors that tell the heart muscles to contract are not really firing correctly on the right side. As a result, the right ventricle is not being told to contract by the right electrical current in the heart (those medical brains out there will recognize this as RBBB - right bundle branch block). For Keane, this is his new normal. It's not anything that needs treatment - the left ventricle current travels to the right side and like a Sunday drive in wine country, allows for the right ventricle signal to contract on a detoured current.
Keane will continue to take his Viagra for the next three months - until the beginning of December. However, the dose will not be adjusted for his weight gain. Consequently, he will be getting a decreasing dose over time. Dr. Kelly was not totally convinced that Keane has pulmonary hypertension; the RBBB can make the diagnosis of pulmonary hypertension less certain, he may just have a RBBB. The first or second week of December, Keane will return to Doernbecher for another sedated echo (which seemed like a big deal the first time, but a cake walk after surgery). Hopefully, he will get another gold star in December, wean off of the Viagra completely, and be an annual check up with the Cardiologist kind of dude.
Oh, I don't want to forget -- for those who have ridden the weight roller coaster with me..... Keane weighed 14/1 today. Yes, I did not mistype; he weighed 12/6 at discharge, that's about 0.75 lb gain per week since discharge. I'll make sure to post a picture tomorrow of his chubs!
Shhh! It's bedtime.
Back from Portland after Keane's post-op appointment with Dr. Kelly. Keane and Mom went Sunday night, Dad and Avery stayed home. The siblings were reunited for a little Dad pre-bed torture (because it's so easy to fall asleep after Dad torture)!
Thursday, September 6, 2012
Avery's first day of school
Picture from Avery's teacher: "Avery had a great first day of school. What a delight it
is to have Avery in our classroom!!
Mrs. Demers"
is to have Avery in our classroom!!
Mrs. Demers"
Sunday, September 2, 2012
First bites!
What a difference in just two short (ok long) weeks. This is a really big deal for a kiddo with DS. No problems eating or swallowing solid food...!
First real outing - Two weeks post-op
Yesterday the whole family went on a great outing. It was the first time in a couple months. Recall that Keane needed to not be exposed to crowds before his surgery. As a result, we really did not do anything as a family unit all summer. Talk about the longest, shortest summer ever. First, we wait and wait and wait. Then, we can finally get out and have some fun with less than a week before Avery starts school!
We decided to go geocaching near UO yesterday. Since it was the first duck game, there were plenty of people out and about. We tracked down four cache's using our GPS; however, we didn't find a single "treasure." Bummer, but well worth the effort to see both kids having fun on a beautiful day.
We also went out to lunch and bought Keane a baby food maker gadget. Guess what ...? He tried carrots yesterday. Loved them! I am relieved and grateful that he has apparently not be cursed with the Down Syndrome symptom of a malfunctioning swallow reflex, which causes some kids with DS to aspirate their food. No choking, no struggling, just smiling and eating. Introduction of food is a blessing at this point as entertainment for a kid that has to be carried like a pizza wears thin on only week two of six with sternal precautions.Plus, when I begin to travel to Corvallis again at the end of September, Keane will have another option besides Mom to fill his belly.
Sleeping is improving, although I still long for the day when I/we will get uninterrupted sleep. It seems, although I hesitate to say it aloud, that Keane has returned to his pre-surgery sleep schedule: waking up two times at night to eat. We have had three days in a row of midnight and 4a waking, with relatively easily and non-dramatic return to bed. Is this a trend that will sustain? I hope so. I also hope that we can eliminate one of the eating sessions, as his heart is fixed and he doesn't need excessive extra calories. However, that is the habit we established. Because he has pulmonary hypertension he is not allowed to get too upset, it's dangerous for him. It's a little hard to say "no" to eating in the middle of the night if he can't cry a little. He is supposed to be on Viagra for three months for the hypertension.
Sleeping is improving, although I still long for the day when I/we will get uninterrupted sleep. It seems, although I hesitate to say it aloud, that Keane has returned to his pre-surgery sleep schedule: waking up two times at night to eat. We have had three days in a row of midnight and 4a waking, with relatively easily and non-dramatic return to bed. Is this a trend that will sustain? I hope so. I also hope that we can eliminate one of the eating sessions, as his heart is fixed and he doesn't need excessive extra calories. However, that is the habit we established. Because he has pulmonary hypertension he is not allowed to get too upset, it's dangerous for him. It's a little hard to say "no" to eating in the middle of the night if he can't cry a little. He is supposed to be on Viagra for three months for the hypertension.
Avery starts school on Wednesday, with a two hour orientation for the whole family on Tuesday. What an exciting transition for Avery! She looks adorable in her uniform. We will be sure to take some great pics next week.
We remain eternally grateful and still overwhelmed by the support we have received from our family, friends and colleagues. We are truly blessed and lucky to have great people in our lives.
What you missed... last week
Last weekend, Mom and Dad took Avery out for an hour, just the three of us. We went to the "Family Fun Center" and Avery and Dad rode the go carts. After, we all went on the bumper boats. If we had known the boats had squirt guns and the 12 year-olds would gang up on us, we may have opted for mini-golf! Note the change in Avery from the first lap to the last lap.
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