Seriously?!?

Uggh. Why does it always seem like it has to be one step forward and 48 backwards?!? Alex had a really hard time this weekend, was unhappy and was literally awake all Saturday night. We drove down to Williamsburg to visit my in-laws who were visiting and we thought maybe Alex was so restless because she wasn't in her own bed or surroundings. But this morning she was still unhappy and really pitching a fit when I drove her to therapy. Shortly after I got to work her therapist Shannon called and asked if anything had happened to Alex's arm over the weekend. Because of her low tone, she has sublexation of her shoulders. We know that so we're just extra cautious with how we handle her arms. Shannon was having a hard time with Alex's range of motion and during one of the exercises she usually loves, she was crying and biting. Long story short, Shannon called the orthopedist and they said to bring her in. We had a 1:20 appointment, but they didn't call us back till almost 3:15. This happens EVERY TIME I go see this particular doctor and it makes me SO MAD. Why do they schedule appointments every 10 minutes when they clearly know they get backed up so far? A 2 hour wait? That's just inconsiderate and ridiculous. They took x-rays and the arm was back in the socket, but Alex was clearly still uncomfortable and in pain, so the doctor tells me she needs a shoulder immobilizer, but my insurance company wont pay for any of that doctors supplies and I need to go somewhere else to get it. Umm, WHAT?!? What good is an appointment with a doctor if they can't actually fix the problem - AFTER I WAITED 2 HOURS to see him in the first place. Oh I was fuming by the time I left there. Not to mention the fact that Alex had completed her three hours of the therapy when we left for the doctor appointment and Audretta had fed her at therapy. I should have known better and packed food for her, but honestly, I was a little preoccupied, and remember that her eating is actually a whole new ballgame for me so I didn't think about blenderizing something before we walked out the door. By the time we went to the other doctor, WAITED there for the immobilizer and got home, it had been 6 hours since she had eaten and she was exhausted.

Here's our latest accessory for the next three weeks...if she's not better in the three weeks, the dr. said we'll talk about surgery, but given how bad her low tone is, there is no gurantee that the surgery would even work...

That can't be comfortable to sleep in, but she's so exhausted I don't think she cared...

The part about this that upsets me most is that we just started week 2 of our 3 week intensive therapy program. All of the goals that we set for Alex have to do with weight bearing through her arms to help her walk. Sounds odd that the arms would have anything to do with walking, but if Alex is going to walk with a walker, she needs to be able to apply the weight through her arms to be able to successfully take steps. So we're giving her the day off tomorrow and Shannon is going to see if we'll start back up on Wednesday, if we push the therapy out another week (which isn't ideal because it's intensive therapy and you don't want the kids to have a break in between) or if we have to scrap it all together. And not to start another rant, but that would really stink because of insurance purposes. Sigh. It's just really been a crazy two weeks between running back and forth to therapy for five days, Speech Therapy, Zach at the doctor twice last week for strep, then the crazy rash that he broke out it in, another feeding clinic appointment (which I'll have to talk about later), back at therapy today, the two orthopedic appointments - oh, and somewhere in there I'm trying to actually keep my job.

Ok, enough venting.

Here's a little video of Alex doing some 'cage' and suit therapy.