Thursday, January 21, 2016

More on Poppy

We've now had Poppy home with us for two whole months! 
And she hasn't had to be admitted for anything,
which is big cause for celebration, I think.
She has had a few setbacks, like needing a blood transfusion in
December, but it went well and we haven't noticed any complications.
And one of these days she is supposed to start weekly iron infusions
(iron through an IV) so she shouldn't need another transfusion, but
we are still waiting for the call that said everything is set and here's when
she needs to come in, but we haven't had that call yet.
It's pretty frustrating, because her iron count keeps dropping and if she doesn't get
an infusion in the next week, I think she'll need another blood transfusion.
Which we were really hoping to avoid.

We also have a new home care nurse.  I was sad to see the last one go - she
was great.  And my first experience with our new one was less than
stellar, but when she came yesterday, I liked her more.  So maybe we 
were both having a bit of an off day that first visit.
The home care nurse comes once a week to do a blood draw and
to change the dressing on Poppy's broviac line.
It's nice that I don't need to do that - I am willing to if we are told
by our insurance company or whoever makes that decision, and
I feel confident that I can do it if it was an emergency situation,
but I am very thankful that I don't have to for now.
It's nice to just be the one to keep Poppy preoccupied and be on
binky duty.  She is really good at keeping still and being
happy whenever she's had a home care visit, so I mainly just 
keep her arms away from her chest when needed & pop the binky back in.

She has also started physical therapy.  We have two different places helping her.
One is through the school district.  Because of her vision problems,
she qualifies for a vision teacher to come out twice a month and help
her learn things.  We've only had one visit, and it was mainly an 
introductory thing.  But her other PT is through the hospital.
She has an irregularly shaped head, so she qualifies to have some visits for a few months.
The goal is to help her with muscle control so she can be mobile
and have her head reshape so we can avoid needing a helmet.
That lady was great.  And Poppy tolerated the work very well.
Although she starts to cry anytime I start to put her in the positions
I was asked to work with her with - even before I do anything else, just getting
her ready.  So I still do it, but we are slowly building up.

We had a great Christmas break - and pretty much finished remodeling the kitchen.
I took some pictures, so hopefully soon I will get them up on here.
I LOVE it.  The kitchen feels so different and I feel really good when I go in there.
And I have more of a desire to keep it clean and nice.


Melissa said...

Well things kinda sound semi ok. I'm glad. Thanks for the update. I only had 3 weeks of a sick kid man. Sometimes you must just get tired. I hope they can get that iron figured out. That seems way better for her than blood don't you think? I hope the home health nurse is ok for you. Sorry the other one is gone. That sucks. I'm excited to see your kitchen. Can we see a picture of the kids?

Rob and Becca Bingham said...

That is so great that you have not had to take her to the hospital! What a small blessing. What a change of pace with all the doctor visits, but you always sounds so positive on here. I am sure some days are better than others.

I cannot believe you remodel the kitchen with all of this! How awesome! Those kinds of changes are fun and refreshing!