January 20, 2010

Every day is like a Beatles lyric these days.

First everything was all "A Hard Day's Night", and I wanted to go all "Maxwell's Silver Hammer" on people, but I did a little "Crying, Waiting, Hoping" and then asked for some "Help!". People said it'd be a "Long and Winding Road" but I knew I had to do anything I could to "Take Good Care of my Baby" and even though "It's All Too Much" sometimes, most of the time "I Feel Fine" and, finally, "Here Comes the Sun"!

(Yes, I know that was annoying but it's 2:15 in the morning and I have to get my kicks somewhere, right?)

So, day 2 of Risperdal for T and things don't look much different, which is actually a good thing. It's one of those medications that needs to build up in his system, so seeing any major difference right now would mean the dose is too high. Better a bit too low than too high on this stuff! I really have great hopes for this because, let's face it, we're grasping at straws here. More good news is that his wife owns an early intervention/ongoing services company and he was able to get us some numbers to call for programs and services that T might qualify for. So, that' what I'll be doing tomorrow. (Can I just say that I love this doctor? We were there until 4pm yesterday and he called us around lunch time with the numbers we needed. Awesome!)

T's antibiotics seem to be working. He hasn't mentioned his ear hurting which is great. E had a doctor appointment today, though. The doctor said she doesn't have an ear infection yet, but she could if the fluid in her ears fills with bacteria. So, he gave us some samples of a decongestant to get the fluid out before the bacteria can get to it. Here's hoping it works!

The doctor also addressed E's ongoing stomach pain and let us know that, if it continues for much longer he will be referring us to a pediatric gastroenterologist. All of his x-rays have only shown us that her colon and intestines are distended and, with a daily regime of Miralax, that shouldn't be happening. So, a few more weeks of extra fiber in her diet and the Miralax and we'll see if it helps at all. If not, we can add another doctor to her armory. At least her pediatric endocrinologist has said that we don't need to monitor her as closely. (Hey, I have to find something positive i all of this muckety-muck!)

Jeff has a followup appointment for his Lateral Femoral Cutaneous Nerve Entrapment next week and we really hope the doctor has some solid answers or plans because living like this is just not an option. The pain is unbearable and the medications to manage the pain turn him into a zombie. We need to know our options and get some kind of prognosis. I have my fingers and toes crossed!

As for me? Well, I'm hanging in there. Barely. This is all so much to handle and I feel like I'm unraveling at the seams. I have some hobbies that keep me occupied I feel like I'm kind of obsessing on them in order to avoid thinking about the implications of the rest if this. Ostrich much? Well, let's be honest, it's a whole lot for any one person to handle and I'm not Wonder Woman by any stretch of the imagination!

So, who knows how often I'll update or how this will all turn out? Not me, certainly! I'll try to keep people in the loop but forgive me if I get caught in the riptide.

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