Discombobulated

It’d almost be comical…

… if the stakes weren’t so high.

Is it just me or is there always something when you have a kid? Ellie woke up with a pressure sore on the bony part of her left ankle today. I know if Jacqui were writing this post she would tag it under her label “Parenting Skills, or lack thereof” which helps other parents feel like they are doing good job. And so this post goes, where I chart our ineptitude. I’m upset, pissed off and freaked out about it. Yikes! A pressure sore. Ellie has never had one. What I know about them is that once you have one that particular area of epidermis is forever weakened and prone to getting them again. I have read of quadriplegics having amputations because of unchecked ones. If there is on thing a parent of a kid with CP gets bragging rights about it’s that their kid never had one. So much for that.

And all of this because I didn’t listen to my inner voice last night telling me to remind Dada to take off her AFO’s. The OLD AFO’s because I am playing phone tag with her AFO guy’s secretary to get her NEW AFOs on top of the bazillion other calls I must make. Here is a partial list of those calls I must make today:

to pharmacy for new seizure meds and reflux meds,
to eye clinic to set up appointment to get Ellie fitted for her glasses,
to audiologist to keep hearing aid process moving forward,
to the program that will get Ellie’s diapers paid for,
to pediatrician for a letter of necessity to get a shower chair
to medical equip guy to order said chair
to neuro doc to regroup after the seizure,
to new neuro doc to try to get an appointment,
to GI doc about potential med interaction that may have caused the seizure,
to pediatrician to insist on getting oxygen and suction kit in the house
to hippotherapy place to get Ellie started
to Ellie’s medical equipment supplier for her enteral supplies
to insurance to get another emergency seizure kit
and on and on and on and on

Imagine you have to call your credit card company and navigate their automated phone system and wait at least 30 to 40 minutes to get a person then add more waiting time for calls back and more calls for when the nurse has to then check with the doctor and then call you back…

So if you are ever wondering how a mom of a special needs kids spends there time – there you go – a very partial list.

Is it me, or is this insane to the point of comical. Or am I losing it because her seizure has put me over the edge. Maybe the random crying is a clue. Ok – yes this is a whine and a rant.

So other parents out there, of special needs kids and able bodied ones, am I crazy, or is there always something?

Update: By the way, Ellie told me it was not an aowie and it does not seem to hurt her and had come down a bit, 7 hours later. Secondly, we just came back from picking up her new AFO's and our man there told us that because the skin was not broken it would be alright and and potentially be without further issue. Let's hope he is right.