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Monday, May 21, 2007


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.


Lori said...

Well, I am glad to read the Update, and hoping that "the man" is right! I hate to think of Ellie with any new owies, and especially one that could continue to cause her trouble.

Kathryn, that list of phone calls you have to make literally made me start to sweat and my heart to pound. I have a strange aversion/fear of having to make phone calls to strangers, even if it is as simple as making an appointment. I will put off making my kids doctor/dentist appointments for days even though I know it is important. I even make my husband make all dinner/hotel/plane reservations. It's insane, I know. Nevertheless, I CANNOT imagine having to make all of those calls or trying to navigate all of the different systems and organizations you have figure out.

So, while yes, even parents of able bodied children might be tempted to say it is "always something", I have to admit that my day looks nothing like yours. If there were ever a group that needs full time Personal Assistants it seems it would be parents of children with special needs. I wish I could send one your way right now!

Mel said...


I have a similiar list of phone calls to make. It feels like there is always something to deal with. It's more than a full time job!

Oh, I hope it isn't a pressure sore.

I'm so sorry about the seizure. Keep us updated!

Billie said...

Always, always, always something.

Jacqui said...

Always something. Moo goes to the ped with hubby. I wrote out a list for him of things to discuss. Put on it - dietician happy with weight gain, only needed to see her once. Well, those damn mockas. Guess who lost a pound since March? And I didn't even notice.

I don't have as many phone calls to make (our phone battery died so I have an excuse not to make any phone calls longer than 2 minutes - haha - which rules out all of them). Seriously, I hope you make some headway into the list.


ps- I have no idea even what a pressure sore looks like. You are still one up on me.

Anonymous said...

I've had sores from AFO's like it sounds like Ellie has before and never had issues after they healed before. As you said it was with old ones that didn't fit right or new ones I was just "breaking in". I can't remember they had us use to attempt to prevent rubbing and chafing on the skin but I will ask my mum for you if you want.

Penny L. Richards said...

Yep, it's always something. I only manage to do the phone calls by reminding myself that NOT calling is very rarely an option--it's either "call now while there's time to do something constructive" or "call later when everything is an emergency." So, the best you can do is call under good circumstances, eh?

Rick said...

Just because it is always something (and imho it always is)
doesn't mean you are NOT crazy

from your friend whose kids caused him to lose it years ago


Jodi said...

It IS always something and sh*t happens too....both sayings invented by mom's of kids with special needs.

Danielle said...

I didn't see it obviously, but reading your description I also thought that it was probably NOT a pressure sore. Don't beat yourself up even if is/was! LOL. Your phone call list was so long I had to get a snack before I could finish reading it. I went to the NICU last night after we delivered a baby with OI. Thought of little Ellie. I can't believe how SMALL she must have been. I saw some 32 weekers and thought THEY were teeny.

Anonymous said...

The phone calls drive me nuts - calling, waiting, explaining, waiting, more waiting, more explaining....


Dream Mom said...

I have to agree...there is always something to do. I pick one day a week as my medical day and group like items. It makes it go by a little faster.