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.