Good news all around!

(Edit: I just realized I had already written about the ophthalmologist earlier in the week - wow, what a mommy brain move!! So I deleted it from this entry! hahaha)

Tuesday we had an interview with someone from social security to try and get Lillian on disability. It's going to be a very long, tiring process. We know they will most likely deny us but we have to try and if they deny us, we will just appeal - again and again if we have to. We're not looking for a bunch of money. We know we won't get that with Dennis' income. But we would LOVE to be able to get Lillian on medicaid so that her specialist appointments ($50 each about every 2 months for a very long time just for her endocrinologist) and her prescriptions can be covered.

We're in that awkward middle class family where of course, we don't make enough to not worry about things but we don't make so little that we can live off the government. I just hope something can come through with this. They say it will take 3-6 months to decide! And then of course, we'll have to appeal the denial. The good news is that if/when we get approved, they have to back track from when I applied (in May) and reimburse us. So it was really important to get the ball rolling.

Another really good thing is that Lillian's blood sugar (glucose) has been very steady! We don't really check it that much anymore unless it's been a long time. She usually eats every 2-3 hours during the day so it's not necessary to check it then. But at night we were still going every 3-3.5 hours. Well, I am happy to say that we did 4 hours the past two nights and it's been going very well! I think we'll try it at 4 hours for a week or so and then try putting her back in her own room, in her crib for the night and see how that work.

We've also been getting onto a better schedule. It's not really the same everyday but it's close to a schedule as we'll get right now. It all depends on bedtime, which is usually 7pm nowadays. So it goes something like this:

7pm - HGH shot, Nurse, Sleep

11pm - Hydrocortisone, Nurse

3am - Nurse

7am - Hydrocortisone, Nurse, Get up and play

9am - Synthroid, Water

10am - Nurse, Hopefully a nap!

Noon - Snack time with usually an avocado slice

and then the middle of the day is all up in the air depending on the nap time until:

2pm - hydrocortisone

We spend the day playing, nursing and moving from room to room.

6pm - Dinner of 2 cubes of vegetables, then usually bath time

And we start back over again!!

Eh, it's not great, but it's working for us right now!