Mom, where have you been hiding this fun thing?

First time in play gym. Special blanket props help make it all possible!

Fun on the Fourth!

West Springfield is too cool. On the Fourth Grammo's and Grampo's neighborhood organized a kids bike parade. Avery was full of birthday spirit for her country and proudly sported the biggest flag on the block (at least the biggest flag attached to a tiny bike).

Baby weight watchers?

Have I taken my job as super feeder to the extreme the last couple days? Possibly. Who cares if I have pumped a billion calories into my little man? Enough to gain 4.5 oz in three days! Yes, it's true! Our reward... sleep. We can now put Keane to bed at his normal bedtime and only wake up one time around 2a or 3a to feed him. Dr. Bob said we may have to "start him on baby weight watchers" if he keeps this up (Just kidding! He did say that, but he was kidding too). I am reducing his "super high" calorie supplement to only a "high" calorie supplement. We will see how the weigh in goes at the cardiologist on Monday....

No feeding tube. No feeding tube. No feeding tube...!

Please consider the bottle!

It's nice to see you Grammo, but what is this thing you keep putting in my mouth?

Why is everything so pink?

Happy dancer (just getting this posted late)

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.