Sunday, February 12, 2012

Our normal

Anna was scheduled for a renal ultrasound (bladder and kidneys) and follow-up urology appointment the week the girls fell ill with bronchitis. We rescheduled that appointment to last week. It had been 36 hours since Anna had thrown up but as we were readying to leave the house that morning, she puked. Needless to say, we called and canceled.

I hate these appointments because I fear the discovery that something may be wrong. That's why she has these appointments. Because something could be wrong.

As we approach Anna's 5th birthday, our frustrations continue to grow over the bowel management program (or lack of) that isn't quite working. We still have days where we blow through 10-12 pull-ups. We still have to buy wipes. There's an emotional impact. There's an added expense that thankfully we don't have to be concerned with given that Rich and I are both bringing in income. (Our insurance does not cover this.) I mention this because some may not realize that this is our normal.

While running errands a few weekends ago, we cathed Anna in the van. We do this quite often. If we are out and about, it's really the only comfortable and private place for us to do so. I wonder how much longer we can do this. Is Anna going to protest? Will there just not be enough room? At some point, Anna will be cathing herself. I can't help but feel that a responsibility this great should not fall on a child.

Today was the first day in a long time where all signs of sickness have left our home. Anna's stomach was much better yesterday but she was still acting very irritable. We were concerned that it was related to her shunt and that she wasn't telling us that her head hurt because she knew that by telling us, she would have to go to the hospital. Thankfully today, that worry is gone.


I took this a few nights ago. Anna had her legs curled up even further but had moved by the time I returned with the camera. (Most nights, she refuses to sleep with any blankets. I think she gets heated up. Medicine side effect or genetics, perhaps.)

I can still see that tiny baby in the NICU. That baby who was strong enough to endure three surgeries her first few weeks of life. She was in an open air crib for much of her NICU stay. I remember one of her nurses telling us how she would bring Anna around at night to visit with the other nurses and babies. I always smile when I think of that conversation.


Tara said...

she is so adorable.

Poor girl.

Vesti said...

We're only almost 2 years into this SB journey and bowel management is going to send me to an early grave! We have an appointment next week to re-evaluate and likely begin using the cone enema. Ugh. Hopefully they'll find something for Anna too!

Julia said...

Glad everyone is feeling better.

My heart goes out to you and Anna. She is going to be (and already is) a very strong girl, if you can count upsides to such a hard situation.

Farah said...

Oh my goodness. She is a sweet little sleeping angel. I am so happy that she is so loved <3

Wiley said...

Do you know from older kids and the like at what age they typically start cathing themselves?

It is interesting how the definition of normal changes and you don't even notice it unless you really set out to think about it.

Good thoughts towards the rescheduled appointment and continuation of the "normal".

And no sickness!!

CJ said...

Bless your heart.

Candice said...

You are a mighty strong family. I agree with the comment about how loved she is. I can't imagine how a little girl with a less devoted family would cope with this. I hope you can find some good solutions down the road.

Lily said...

Ugh :/
I remember reading about a bowel management plan a while ago. I'm sorry to see it's not working out.
Much love.

Just the Tip said...

All I can do is sigh.

Does Anna go to a spina bifida clinic? That has been our greatest resource as of late.
Also, they probably won't but you could see if your insurance would cover diapers under DME as a supply, depending on the diagnosis codes, they might.
As for P's bowel issues/habit's she normally goes once a day and we have started using miralax again to try and help with her high bladder pressures because she was fairly constipated. We haven't discussed it with the dr's very much at all though.

I hope you make it to your appt soon and get some answers

Patty said...

I don't want to diminish what you are going through in any way. I have a child with her own medical condition so I want to offer you hope. I think kids accept things that are thrown at them better than we do sometimes. No, Anna won't always be happy about her medical condition. She's going to scream and rant and rave. And you will cry right along with her. BUT, she's going to rise and do what she needs to do because she has you as parents - people who care and are sensitive to her needs. And, in turn, she will be sensitive to others; accepting of differences; compassionate to those who struggle. In short, she will amaze you! (or continue to do so!) Keep doing what you are doing - fighting for her to have the best situation she can. That's all we can do!

Sarah said...

Kids start cathing themselves in elementary school.

They have SB clinic at Children's Hospital and Anna's doctors are with another hospital - no clinic. We have been sent to Children's for various procedures and other doctors. I had a phone convo with the uro nurse back in Dec and we talked about what was going on. We basically had a bad experience with a GI doctor. We rescheduled for a few weeks from now and hopefully we can make some progress with her urologist!