I swear I am losing track, but I think this is #3. It was right after the ridiculous earthquake and we really didn’t want to leave the kids behind. So it was not my favorite trip, even though I had been excited leading up to it…!
Natalie didn’t seem terribly excited either - ha! She' thankfully slept most of the way to Seattle in her dad’s lap. We usually prefer to have the kids in their own seat regardless of age, but we don’t generally have enough notice on these trips to book three seats together. So we make do!
Our super awesome friends again let us stay with them for a few days! I hope they know how much easier they make these trips than staying in a hotel. Not having to bring all of the extra baby gear is huge!!! And Katie always make us coffee in the morning, which is the sweetest thing (mom’s get each other!).
You can see that Justin takes his role of entertainment very seriously. ;)
This visit was to the Aerodigestive clinic, which is focused on breathing & airway issues holistically. We don’t have that in Anchorage and it is terribly difficult to get the specialists she needs to talk to each other, so this is supposed to seamless care and I have been so excited to have that for her. They did her swallow study first and I was so nervous she would refuse to cooperate for the test, but she did amazing!
Then came this survey for me to fill out. It may be a little hard to read in, but it was even harder to fill out. I usually just try not to worry about the future for her, but this survey was demanding I face my worries and it was terrible… Yes, I worry a lot that my child will never eat and drink like other children. And yes I worry that I am somehow not doing enough to help her. Ugh. I can live better in denial, thank you very much!
But on the positive side, the swallow study showed massive improvement over the one she had at birth!!! She’s been cleared to eat more food (under close supervision, obviously), but also she’s going to be allowed to drink liquids that have been thickened to the consistency of honey. This is huge!!! She’s been NPO (nothing by mouth) since she was born, with the exception we had recently to try some solids specifically for this swallow study.
So this feels like an amazing step change and probably would have given me more optimistic answers for that survey… !
They also thought she looked very healthy and were complimentary on how we’ve been feeding her via the g-tube so far. So back home we went, with the instructions to come back soon for another follow-up. Good thing we already have frequent flyer accounts on Alaskan airlines… ;)