Too cute

Looking up and getting heavy

Our appointment last Friday went really well. Between the disappointing weigh in on Wednesday and his Friday afternoon visit, Keane gained an impressive four ounces! Yesterday morning we went for another weight check. The minimum gain to reach our 20 grams per day goal was 1.4 oz; Keane gained 1.5 oz. The good news is... hooray, we made our goal. The challenge is that we barely made our goal and there is no end in sight that would grant me a healthy chunk of shut eye. The plan to alternate with Ben didn't really work too well. Keane was too asleep in the middle of the night to agree to formula consumption through a dropper.

Keane has greatly increased his formula consumption during each feeding from about 0.5 oz to 1.5 oz. Not much luck on the bottle front to date, but we will keep trying. He has a huge amount of energy lately and certainly doesn't appear to have a significant health issue. His oxygen saturation has been steady between 87 - 90 without using supplemental oxygen. On average, he is probably getting supplemental oxygen less than once per day.

Onward and upward with improvement and optimism...!

A big "Thank You"

Although this is thoroughly less personal than I would like it to be, I did want too much time to pass before we said a big "Thank You" to our family and friends that have been so supportive over the past two weeks (I know, it feels like much longer already). Your support has come in many ways: phone calls, texts, visits, big baskets of food (and I mean BIG) and money for our mounting medical expenses. We are blessed to have you in our lives.

MANY, MANY, MANY thanks for your thoughtfulness and generosity!

Confirmation

I was so greatly anticipating good news today on Keane's weight gain. Fortunately, he has not lost weight. Unfortunately, he really has not gained weight. He only weighed 0.5 oz more today than Monday, which means he weighs the same as last Friday. However, today he also demonstrated that he clearly understands how to take the supplemental formula efficiently and with apparent enjoyment. Since we started giving the formula, he has only been able to slurp down about 0.5 oz in a 30 minute window, using a medicine dropper. Today, on three occasions he ate 1.5 oz or more in less than 20 minutes. I am optimistic that Friday will bring better news on weight gain, especially since I have a phone call with a dietician from the Peds Cardiology office tomorrow. I am hoping she will allow an increase in the formula calories per each serving. I desperately want to avoid the feeding tube.

One piece of good news... Dr. Bob prescribed a feeding schedule that will hopefully leave Ben and I more resembling parents as compared to our current zombie states: feeding at 11pm, 3am and 6-7am, then all day long until his 9p-ish bedtime. Only waking up once in the middle of the night seems doable. In addition, Ben and I are going to start rotating the 3am shift so one of us is getting enough uninterrupted sleep each day to function. With Keane's new found efficiency in taking the formula, the mission seems reasonable for Dad!

We did receive the results of Keane's kerotype test today - he does have Down Syndrome. The test is limited in the information it provides except to say the extra 21st chromosome was "present in all cells." Given he does not present with many of the physical characteristics associated with Down Syndrome, there was a chance he could have a "mosaic" arrangement, in which some cells have 46 chromosomes (no Down Syndrome) and others have 47 (Down Syndrome present). The blood test to date is not thorough enough to say definitively the type of genetic "creativity" that lead to the current arrangement; therefore, following up with a Geneticist is recommended. However, I am unclear as to what the additional information would tell us. Is it actionable? I am doubtful that more information on what may have gone wrong, where or in which parent would benefit us. We do not plan on having any more children. Does more information, in this case, actually change any outcomes or approaches to therapy for  Keane? Does it benefit him for us to see a Geneticist? If not, I don't think I need that level of detail. I know, shocking for me to not want all the information, but as my Mom always used to say, "are you helping or hurting?" Granted, that was usually in the context of me making unnecessary comments aimed at my siblings, but I think the general caution still applies.

A disappointing visit today

I was very encouraged after Keane's appointment on Friday. His color was better, he needed less oxygen and gained more than his goal weight. Unfortunately, when I took him to his pediatrician's office this afternoon, he had not gained any weight since Friday. I am so disappointed. I have been feeding him either from me, or with supplemental formula, about every hour when he is awake, plus we haven't been letting him sleep for more than two hours at a time during the day. It's exhausting, especially combined with Avery's high-octane personality! The prescription now is to wake up two-to-three times per night to see if he will eat. If he doesn't gain weight for his Wednesday lunch-time appointment, he may have to have a feeding tube. So....we will feed then feed some more!

First Dance Recital (06/23/12)

I know, no words are necessary...!

In case the video doesn't give you access: http://youtu.be/uS0sG9MUoqs

Grrr.... Holidays!

Today I spoke with the scheduling guru from Dr. Kelly's office (Peds Cardio). Keane will have his sedated echocardiogram on Monday, July 9th. The regularly scheduled cardiac conference to prepare for his surgery will occur on Friday, July 13th. THEN... his surgery date will be scheduled potentially for the week of the 16th or 23rd. I was really hoping to secure an echo appointment for next week;  however, 4th of July is putting a damper on my wishes for a timely surgery! I do living in limbo so well...

Keep it coming Mom!

Keane had a great visit Friday afternoon with Dr. Bob. Good weight gain would be one oz. per day; Keane gained 3.5 oz. in two days. Yes! His lungs were clear and his liver is now back where it should be (i.e. - heart and lungs are functioning better, retaining less fluid and not pushing his liver down in his abdomen). Avery also learned about the secret "sister" kiss on Keane's foot. She loves her brother so much she has been trying to smother him with snotty love on his face. She's been giving secret sister kisses now...! Thanks Dr. Bob!

The stars align?

About five weeks ago, I hired a Nanny in anticipation of working a few hours a week. One of the reasons I really liked Allie was her desire to pursue a graduate school education in early intervention. I remember thinking she likely possessed desirable attributes like patience and empathy. Can you imagine, I hired a Nanny five weeks ago who wants to specialize in early intervention for children with special needs AND is completing her senior year internship at Early Childhood (EC) Cares? EC Cares is the early intervention program at UOregon that Keane will likely be referred. So, likely, Keane will see Allie at home and at therapy.

The stars align in the most amazing ways. All roads over the last few months were leading to right now...

Can't forget...

In between being discharged from Eugene's Sacred Heart Medical Center and our trip to Doernbecher Children's Hospital was a very special birthday. Grammy made sure to have all the necessary "supplies" waiting for us in Portland.