Sunday, October 11, 2015

23 Months (almost)

Getting doctors switched has been the most ridiculous and frustrating experience. I need an assistant just to get this done. I wish I had known it was going to be impossible! Suffice it to say: we’ve not yet met our new neurologist and though getting a pediatrician was easy, I’ve already had to fire him. Seeing a new one on Monday, who hopefully knows his stuff, because I know mine.

Lily is still having seizures. I don’t know what else to say besides it’s hard to watch and suffer through with her. Hopefully we’ll be able to get in to see the new doctor within a month or so and try to get things figured out.

She’s doing really well with the g-tube and now has a Mic-Key button since her first tube’s balloon deflated and the tube came out. One more experience (and two trips to two different ERs) under our belts. The balloon keeping the tube in her stomach will deflate every few months and she’ll need a replacement tube then, so this is just one more thing to deal with.

We love our new PT and OT (occupational therapist.) Lily sees each of them once a week now. They are pleased with how she’s doing. She’s getting closer to sitting by herself, though she still arches back and if she has a seizure she goes rigid, so it makes it that much more difficult. We’re working on finding toys that she likes- lights, music, and vibration are winners.

Up next in the equipment department is a new chair for feeding (and just being) in. The little highchair she has now still isn’t cutting it and she needs more support. We’re waiting on the Equipment Man to call our OT back to set up an appointment.
Lily is doing really well in her stander and really seems to enjoy it, which makes us happy, since it’s good for her to bear weight and straighten her spine. I just wish it had handlebars so we could push her around easier- she loves moving around in it.

Now that Lily is over 31 inches tall, she’s officially outgrown her infant car seat, and we’ve been bracing ourselves for the switch to a regular car seat and using her wheelchair, since she still takes so many naps in the car and it’s just so easy to take out the infant seat and bring her with us. It had to be done though, and I’m pleased to say that our outing Saturday went really well. We did end up needing a new car seat since the one we had wasn’t supportive enough (a trend you may notice), but the new one is really great. She did really well out and about in her wheelchair and took a few naps in it, which gives us such peace about it being just right for her, and knowing she’s comfortable in it. Today was the first day that she used it at Mass and she did great. She stayed in it the whole time and took a little nap. We are wondering who thought we just parked a stroller in the handicap pew spot. The base is a Baby Jogger, (which is awesome! And after using a two seater stroller for the past 6 years feels really tiny), so if you didn’t see all the extra stuff she has for the chair part, you’d probably think it was a regular stroller.

The most terrible news is that she has pretty much completely switched her days and nights. She is frequently awake from midnight or 1 to 8-8:30 am, which is leaving us absolutely and completely exhausted. I don’t know what the official requirements are for sleep deprivation to qualify as torture, but I think we’re at least close to it. Really, we’ve reached our ends. If we were able to wake her up during the day, we would. When Lily wants to sleep she will either just fall asleep or cry (and throw a huge tantrum) until she is put to sleep. If she is woken up from this sleep, the process just repeats itself. She will not go to sleep if she is not tired. We’ve been taking shifts during the night but we’re really worn out.

So that’s about it for now. We’re still just taking each day one at a time.


  1. Thank you for the update. been thinking of you guys. Lily is so pretty! Her smile is adorable and looks like the sort of smile that could light up a room!

    oh goodness, the sleep situation sounds....utterly horrendous if I am honest. I am so sorry. A lack of sleep is one of the most difficult things to cope with. Will definitely pray for you guys that her sleep sorts itself out and she reverts to night/day rhythm.
    Big hugs, thanks for letting us know how it's going.

  2. OMGoodness she reminds me so much of my Courtney. She would do this at least once a year. It was just something we had to work our way through. I would get into bed with her and nap when I could. Hugs my friend <3