I haven't written in a while. I thought it was because I had nothing good to say, but I realized last night that it's really because I had nothing bad to say. Things are pretty stable - we're just treading water until Aidan's next procedure - scopes (upper & lower) with biopsies on May 15th, as long as we can get and keep him healthy by/until then.
On the feeding front - he's on 18 hours of continuous feeding, which translates to something like 8am to 5pm, and then bedtime to wakeup. So he gets an hour or two off the backpack in the evening, which he really enjoys. We're feeding Elecare - and (knock on wood) he seems to have leveled out a bit on that too - so maybe he just needed to adjust? I don't really know, but I do have some hope that this scope will go well. It's nice to have hope - because whether I'm hopeful or hopeless, the outcome will be the same. It's nice to have hope.
On the care front, I don't think I've mentioned this, but Megan is moving on. It's not surprising to any of us, but Aidan obviously has no idea. He's going to miss her and the girls - a lot - but they are doing what's right for them and we support that. We don't know yet what we're going to be doing with Aidan - I think having a nanny was the difference between keeping my job and losing it during this last hospitalization - but we'll find the right answer.
What we're running into is that the larger daycare centers are unable to do anything with Aidan's tube due to their corporate regulations. The smaller (non-center) daycares are willing to learn but don't all give me the same "competent" feeling. Bringing in a nanny (not a live-in) is also an option. We are just checking out the daycares in our area first, because I really like the idea of his being with his peers instead of at home alone with a nanny. He's doing so well with Teddy and Chase that it breaks my little heart to realize he won't have them after June.
We are also waiting to get a Social Worker assigned to us to help us figure this all out. I don't know what kind of help he/we qualify for, but they may have more ideas than we do. It's all up in the air right now but I trust that we'll land on a solution.
On the feeding front - he's on 18 hours of continuous feeding, which translates to something like 8am to 5pm, and then bedtime to wakeup. So he gets an hour or two off the backpack in the evening, which he really enjoys. We're feeding Elecare - and (knock on wood) he seems to have leveled out a bit on that too - so maybe he just needed to adjust? I don't really know, but I do have some hope that this scope will go well. It's nice to have hope - because whether I'm hopeful or hopeless, the outcome will be the same. It's nice to have hope.
On the care front, I don't think I've mentioned this, but Megan is moving on. It's not surprising to any of us, but Aidan obviously has no idea. He's going to miss her and the girls - a lot - but they are doing what's right for them and we support that. We don't know yet what we're going to be doing with Aidan - I think having a nanny was the difference between keeping my job and losing it during this last hospitalization - but we'll find the right answer.
What we're running into is that the larger daycare centers are unable to do anything with Aidan's tube due to their corporate regulations. The smaller (non-center) daycares are willing to learn but don't all give me the same "competent" feeling. Bringing in a nanny (not a live-in) is also an option. We are just checking out the daycares in our area first, because I really like the idea of his being with his peers instead of at home alone with a nanny. He's doing so well with Teddy and Chase that it breaks my little heart to realize he won't have them after June.
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| This scrumptious little pigpile is Aidan's little piece of Heaven |
We are also waiting to get a Social Worker assigned to us to help us figure this all out. I don't know what kind of help he/we qualify for, but they may have more ideas than we do. It's all up in the air right now but I trust that we'll land on a solution.
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