Communication milestone today!

Space explorer

Natural history museum

First meal out!

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!

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)!

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"

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. 

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.