We're on the right path

We're finally on more of the right path! In the past week Peanut has gotten much better and stronger. She's been able to be off the vent at night for the past couple of nights now, which would be a big step for her. It means that we'd most likely qualify for less home nursing hours, but that's OK. As long as we have one for the night, we'll be able to maintain our sanity! So she's just on the trach collar all night and then mostly on her speaking valve during the day.

We did get some results from her 48 hour EEG too. As we suspected, there were some abnormalities. They had shown up on the previous short-term EEG's, but this confirmed it. And as Dr. I. told me, they're not even in that gray area, it's pure black and white. She does have neurological things going on. She was diagnosed with Primary Generalized Epilepsy. With some added thing of absence. From what we've been told, with at least 2 years of medication, it should be good to control it and she could be seizure-free after that. It is something that kids can grow out of. Only time will tell for Peanut.

As of today, we're finally taking her off the Lasix medication as well as reducing her nebulizer treatments too. Hubby and I have been doing all her inhaler treatments now, since it's all done with the bag for her now. So we had to learn how to do that. We've been learning more and more on taking care of her as well. We each have to do 24 hours of trach care before she leaves.

In 1 week we'll be in the ambulance heading to CMH! We'll spend the 4 days there and then come back here. Dr. A. will be out of town next week, until 11/8, so she'll come back here on the 5th and possible discharge on the 9th. To us, it's not a big deal since it gives us a little more time to see if that Medicaid waiver comes through so we can get our home health care set. We did make a decision on the company too, one that we're comfortable with. So that's being worked on as well. It's just a matter of getting that waiver set!

Last night I got to spend some really good time with Nutty Buddy too. A wonderful, generous lady (Chris), who knows what it's like to live in the hospital for weeks at a time, gave us 4 tickets to a Disney Show. I've never been to any of them before, neither has Buddy. So my friend D and her son joined us for 90 minutes of music, dancing, laughter, and fun! Buddy had such a great time, he was dancing all the time, up and out of his seat, and really had a blast! We had pizza afterwards and then back to our house for a little playtime for the boys. And thanks to D for the gifts for both the kids. Peanut was happy with all her new coloring stuff!

This last week of being here is going to busy with just getting things set and ready to go. I'll need to pack some things up since there's no way we can bring this all to CMH. Peanut thought I was going to throw things out! LOL! No way! And then just getting more paperwork set and making sure that we're all ready. I've never been to CMH, so I don't know how it'll be. Although since they specialize in children, I'm sure it'll be great!