Selective Fast forward

Recently, my mind has wandered to the point of wanting to be able to fast forward. Most of the doctors believe that Myla will "outgrow" most of this. Once her GI system matures, her reflux should decrease and her cough will hopefully fade. By fast forwarding, we could skip the coughing fits, the vomiting, and the general heartache that coincides with these events. We could also fast forward through the heart surgery and her recovery when and if she requires it. We could fast forward all of our doctor appointments and the frustration with the lack of answers that coincides. We could fast forward the x-rays, the blood tests, sweat tests, swallow studies, and anything else that is thrown little Myla's way. Finally, we could fast forward to a point where Myla no longer requires a feeding tube for sustenance. So where does the downside fit in when there is so much upside?

The downside is what we would miss. We would miss her milestones, as simple as they they might be (she has recently noticed that she controls her feet and legs. This is pretty awesome, except when you are trying to change her and she is wriggling about). We would miss the joy that she brings us and the joy that she brings to her family (especially her grandparents, her auntie, and her uncles, her cousin, and her GGs). Though its difficult to accept, I would not use the fast forward option if it meant missing the little things.

I worry that returning to work in a couple of days will be a structural fast forward. I will count on my hero (my wife) to inform me and document Myla's day-to-day accomplishments, which I know she will carry out diligently. For those of you who are out there, reading this, and are wondering what they can do for us, I know that it would make me feel better if Lindsey and company during the days if possible. If you have an afternoon free, give a call, stop by and see my girls.

Today, the early intervention team was here, early. Myla will be receiving services, primarily due to her feeding issues, though they can't address the feeding directly. The good news is that Myla's motor skills (fine and gross) were found to be in the 5 month range. Her speech and language skills are pretty much on target, but she qualified due to her self-care skills (which feeding is a part of). They seemed optimistic that with appropriate support, Myla will learn to associate feeding with happiness and positivity rather than with pain and upset. Thank you to the early intervention team for their positivity. On Thursday, Lindsey will be taking Myla to her first doctor's appointment without me. This weighs heavily on me. This the neurologist appointment at CHOP. I am pretty certain there is nothing neurologically going on with Myla, but alas, I am just a layperson. We also made an appointment for a second opinion from a GI doc at Robert Wood Johnson. Our GI doc consistently tells us that he "likes Myla's meds." We are not so sure we like Myla's meds.