Friday, May 11, 2018

That's My Milk!

So many times people ask me how Zoe and Ailsa like having a baby sister.  I laugh to myself thinking, they should be asking- "How does Willow like having sisters?"  Willow crawls around here like she owns the place!  It doesn't occur to her that her sisters were here first.  She is at the stage where everything is "mine" and sharing is something her sisters need to do for her, not vice versa.  
Willow has such animalistic behaviours that it cracks us all up.  Whenever I am cuddling Zoe, Willow races over and will nip at my leg to get my attention while frantically signing "milk, milk, milk" as if she is saying, "Hey- thats my milk- back off sister!"  If Zoe is close enough for her to reach- she will slap Zoe's head or poke her in the eye.  Now, just to be clear, a good old poke in the eye could also be a sign of affection from our dear Willow.  In fact, her annoyed actions tend to look at lot like her sad actions, or happy actions, or bored actions, get the point.  Zoe finds this behaviour HILARIOUS!  She just sits there and takes whatever Willow is dishing out.  Zoe says she remembers Ailsa acting this way but in my mind, Ailsa and Zoe have been such buddies that I don't really remember this phase.  

 Ailsa sometimes positions herself between her sisters to help remind both girls to be gentle with each other.  You can see Ailsa holding Zoe's arm down without effort.  Ailsa knows that Zoe can not always control her limbs as much as we would like her to.  We love that Ailsa has learned how to keep her body safe/ comfortable around Zoe rather than avoiding her.  
I love this picture.

Zoe Critically Ill

Zoe was critically ill a couple of weeks ago.  It has been a long time she she was as sick as that.  It seems like Gavin and I forget how medically fragile Zoe is and how easily her system goes out of whack.  To sum it up here is what happened:

-Zoe threw up a couple of times on a Wednesday. We gave Zoe clear fluids through her g-tube and some nausea medication and Zoe was fine.  We touched base with her complex care nurse practitioner and made a plan to bring Zoe to her doctor in the morning.

-Zoe had an ok night but was very lethargic in the morning.  On the way to the doctors office, Zoe started vomiting and seizing- not a great combo.  Gavin had to hop in the back of the van to administer emergency seizure medication and try to prevent Zoe from aspirating vomit in to her lungs.  I drove to the hospital instead of the doctors office.

-When we got to the hospital they called an emergency response on Zoe.  So- lots of people, lots of talking, lots of excitement, lots of medical interventions, etc.

-Zoe had to be "loaded" meaning she needed some serious medications to stop her seizures.  She also had very low blood pressure which required her to get a lot of IV fluid.  At the time the doctor acknowledged that Zoe getting IV fluid might upset her system but at the time he did not have any other choice.

-That fluid ended up going to Zoe's lungs and heart.

-Zoe is ok now.

-Zoe is home now.

-Zoe is back to school.

This admission was seriously a whirlwind and we are still exhausted physically and mentally from it all.  No one knows why Zoe got so sick from "just" a bladder infection.  She has had many bladder infections and not gotten sick like this but she has also gotten this sick from a bladder infection in the past, just not for a long time.  There is nothing we can do differently to prevent this from happening. 

All of the doctors were amazing and made good decisions so at least we do not feel anger at bad care or anything like that.  We can feel anger at the world, life, etc but the hospital staff were great.

We probably do feel some anger...maybe?  I'm not sure.  Mostly, we just feel tired.  And scared.  And grateful.  And proud that Zoe is such a fighter.  

Zoe reached out for my hand in the emergency room when she was between seizures.  She gazed in to my eyes with a scared expression on her face.  It seemed like she was saying, "Fix it."  I squeezed her hand, kissed her head and told her she was going to be ok.  We were right there with her.  We weren't going anywhere.  I plopped Willow on the bed next to Zoe and she gave her an affectionate poke in the eye for good measure.  Zoe did not respond but I know she felt us there, fighting for her when her body was too tired to fight.  

We were in this exact same position almost 7 years ago.  Ailsa was the baby then.  She, like Willow, sat in the stroller and watched as doctors saved her sister's life.  What a weird, and I would like to think wonderful, family Willow has joined.  So far she seems to fit right in.  

Gavin's birthday in March.

One last picture to show Willow smiling because she looks so serious in the other photos.  She actually smiles all the time, just not when we want her to!