So lost...

I'm having a really hard time figuring out what needs are going to help Logan reach his potiential. I feel lost. We want to make sure he has every opportunity to grow and get stronger, and need to figure out our resources. My main concern at this point is, as he gets bigger and longer, what do we use for him to just lay around and play in? He is usually in a boppy on the couch, but is quickly outgrowing it, and I don't want to just lay him on the floor all the time. Do we look at getting a wheelchair stroller, or what? He is also very, very long for his age, and can no longer fit in his baby bath tub, and his bathroom won't fit his equipment in there and the bath tub has sliding glass doors on it. We have a garden tub in our bathroom, but it's hard for me to bend over in that and keep him steady. We are working with a hospice company that can do modifications to the bathroom, but there still won't be room for his equipment. Like I said, he is very long, and will outgrow his carseat very soon. Then what do we do? He still has to be rear facing until he meets the weight requirements, and we are long ways from that.
We had a bad experience with the drug Mestinon over the summer, but we did see an increase in movement, as well as an increase in secretions. But now that he is trached, he may be able to tolerate his secretions better. I think we will probably wait until Logan is a year old to consider it again, and find a different team of neurologist.

The physical therapist wants Logan to wear a vest that could help with his trunk strength, but no doctor wants him to have it because they think it could interfere with his breathing, but we don't know until we try. She doesn't think he will have any issues. OT will start some time this month...thank goodness. Logan's pulminologist wants him to have a few months of oral stimulation before we do a swallow study.

We are still waiting on Medicaid and CAP/c to be approved. It has been a long, upsetting battle, but with the help of so many, we pray it will finally be approved this week. It's just so upsetting when you see people sitting on their butts that are too lazy to get a job, and live off of government resources, but a child who has severe disabilities can't get the assistance they need. I just don't understand why we have to fight for the things he needs to LIVE. It's very frustrating.

Anyway, I'm done ranting. I'm just going to pray hard that things fall in to place for Logan.