Well that sucked

We are in the process of looking for strollers for Mya. Ella and Clayton are getting close to being able to cart their own little rears into buildings for doctors appointments or quick visits and will certainly be nearly there by the time the thing is ordered, approved, passed through the processes of Early Intervention and insurance and shipped to our door. Currently we are making due with cradling her in the pumpkin seat stroller attachment (straps removed because she has long since outgrown it) but her feet stick out the end and getting her in there, especially in the double stroller, requires a bit of finesse. I think it is time. So, I confess, I have been putting this process off. Have you seen the strollers out there for kiddos with needs? The look so....orthopedic...enormous...well so much like a wheel chair. They scream my child has special needs with their straps and there supports. They are heavy and bulky and take up half of your car. And in reality, for a lot of our outings we will still be needing a stroller for the crazies, so where in the world is this thing going to fit? Next week we are going to see 5 of the lighter weight varieties and a couple of them actually look pretty cool. And that is what Mya needs. Cool. So I am praying one of those will work...the best.. AND be approved. Because with 'cool' also comes quite the price tag. And, as I will not be the one paying for the thing, I doubt the powers that be care as much about Mya's status on the playground as the bottom line.

And speaking of things I did not want for my child. A very nice gentleman just delivered her suction machine. When discussing her admission and our goals for her our response was something like this: We want to leave this place with our daughter and her g-tube. We do not want her room to resemble a hospital room. We want to be able to lay her in the middle of the floor and let the little people crawl all over her. We want to treat her like we treat Ella and Clayton. Like a kid. And so it begins. We actually did get to leave the hospital without any add-ons but in our visit to the pediatrician this afternoon she said she was ordering us suction. And yes, it is just suction, and it can only help her, and we only have to use it when she is sick but it just is starting to feel like a very slippery slope. Next time, and our confidence that there won't be a next time is about the size of a freeze dried pea, it will be oxygen, and the time after that a pulse ox. And before we know it we will be monitoring everything and we will be better equipped than our doctor's office. Oh, wait. We already are. They don't have suction there. I guess it is better that these things come gradually. That way they can become your everyday and the next step doesn't feel like such a change. It give us time to make room on her dresser for some machines and a space in the car for her wheel chair.

And now she is coughing. Last night I would have let her cough. Now I am wondering if I need to go suction.