…these days, it seems.

The truth is, I am worried about the girl.

So worried that I’m not sleeping well and when insomnia hits, it messes everything up.

I have no trouble getting to sleep but then I wake up a few hours later, full of nightmares and worries and stress, I can’t seem to relax enough to find slumber again.

Functioning as a human being when you have not had much sleep is hard.

Functioning as a mother harder still.

Don’t get me wrong, the IVIG is going great.

It’s the other stuff, the threat of bigger things, with little or no answers.

It’s the waiting

and

it’s the watching.

Lately the kids have been asking me if Ivy seems a little blue around the lips. I try to weigh up whether they have overheard my debriefing to David or whether they are genuinely seeing some change in their sister.

Everyone (okay, not everyone but people who are closest to us) has noticed her extreme fatigue and her breathlessness and someone in the street asked me about her bruising the other day.

*sigh*

I’m sure some of it has to be the medication.

I know that to some, I might not seem very proactive  but really there is very little for me to do except wait until we see the paed. He is the only one who can push for appointments to be brought forward and there is nothing emergent that would give me need to phone him because, aside from the usual goopy ear and the wet cough that has hung around since the last bout of pneumonia, she has been well.

No high fevers, no febrile convulsions, just a ‘cold’ she can’t seem to shake and general crankiness

and

afterall, he took two weeks to return the call about her heart (when, by his own admission, he knew it was a touchy subject for us) and his last little snark, before he went away, was about his expectation to speak to us almost weekly. He might have been joking on that one but then again, he may not have.

(On an aside, we most certainly do not talk to him weekly (more like daily – kidding, just kidding)).

It’s hard to write about the possible lung disease and the pulmonary hypertension when I don’t know where we stand on that.

It’s hard to write about it but it’s easy to worry.

I’m quite good at that.

Now the worry is invading my sleep, so I figured, if I push it out into the universe, I might feel better

and a good night’s sleep may be forthcoming.