iPhone pictures: A different view

Maddie finished her ACTH treatment Monday. This round was almost 60 days of steroids. She has had over 100 days since being diagnosed with IS in February, and over 200 days of steroids since her leukemia diagnosis in late 2007. This is most certainly not good for her and only time will tell how much damage they will have done to her brain and body. I will not put her through steroid therapy ever again!

I realize that I mainly post good pictures of Maddie, but the reality of our life is that there are alot of times when she does not look so perfect. I have been pretty lax about taking pictures of Maddie since the onset of the seizures. Part of this is just a product of how busy she keeps me, and that I don’t always have time to grab the camera when the urge strikes. There is also the fact that she is quite moody, and doesn’t love to just ham it up for the camera like she used to. The other part, I am more embarrassed about. It is that I am not sure I want to capture all of this and commemorate it forever. It is painful to look at pictures now and think, oh, that was just before (or after) that particularly nasty cluster of seizures. But also, she looks different. The meds have made her gain tons of weight, then lose it, then gain it all back again. And as foolish and horrible as it sounds, I like it when she looks like my beautiful, perfect Maddie. I am less fond of the pics when she looks like she has been blown up with an airhose.

But she is always my beautiful Maddie. And I need the bad ones to remind me of how much we are constantly putting her through. And how amazing she is that she keeps rebounding from it all.

So I am sharing some pictures from my iPhone that I have never shared before. I took them at times when I didn’t have time or just didn’t want to pull out my real camera. There are a few at the end from my real camera, just because they help complete the picture of the last few months. These are real pictures of Maddie.

March 25 – Huge from the first round of steroids to treat the seizures

3/25 – this was what she did when I asked her to smile…..Silly

That smile again…

March 25 – 4 days before she almost died of sepsis

April 1, in PICU, horribly swollen, just taken off ventilator

April 1, in the PICU

Back on the 11th floor, early April, after being released from PICU

At home. mid-April just after hospital discharge

April 21, at the hospital waiting for her VCUG

April 21

Early May, she is starting to regain strength and confidence

Mid-May, started Topamax, balance and cognitive ability going downhill again

Pardon my silly outfit, it was cool and windy, and so we layered

May 31, by now the Topamax has made her unable to walk and pretty out of it

Beach hair and her silly smile

Sleeping like an angel in my lap

Early June, just started ACTH, not too crazy or hungry yet….

Mid-June, happy despite the ACTH crazies

July 4th – Playing boo

July 4th Boo!

July 29 – Note her size, and the red cheeks (High hgb)

I didn’t mean for this to be all about the weight fluctuations, but it really is a devastating side effect of the steroids. Of course, during this same time period, I have some absolutely beautiful pictures taken of her, both by Angela Shea and myself. But these are those that I wouldn’t typically share. I hope sharing them gives you a little more sense of the enormous amount of absolute crap she has gone through.

I am not allowing comments on this post. I know she is always beautiful, at least she always is to me. I didn’t share these so I could hear how beautiful she is, but rather to give you a different glimpse of her and all we have put her through.

Love to everyone,
Liz