Thursday, June 28, 2012

Adios, Port!

As I type this, Scarlett is having her port catheter removed from her chest!  It was placed when she was a teeny tiny 3.5 months old, was poked mercilessly every week, often multiple times a week, for anesthesia, blood draws, medication, tranfusions, and IV chemo.  It hasn't worked for months, and she should not need it any more, so it is going, going, GONE!  The procedure is short, only about 40 minutes, and should have only minimal discomfort for her.  The worst of it, I'm sure, will be that she can't take a bath for a few days.

Leave it to us to schedule a surgery when we are mid-move (as in, half our stuff is in one house, half in the other, and I can't find anything!)  We should be done moving by the end of the weekend, and hopefully things will calm down significantly.

Monday, June 18, 2012

20 Months, A Wedding and the $%#* Shunt!

We have been constantly running since my last post.  I started work (so far, so good!), we've packed up a lot of our house, had a garage sale, went to a wedding, and made an extra trip to the neurosurgeon.  And, yes, somewhere in there, we slept (some).
In the sink/bath, her favorite spot in the house!
Scarlett is now 20 months old!  She is not much different in size/weigh/height this month; still in 12-18 month clothes and size 4 shoes.  Her 16 teeth are nearly fully grown in, and sometimes she lets us brush them - just in time for molars to start sometime soon.  She says mama and dada every once in a while, and we thought we caught a buh-buh (maybe bubble?  We were in the pool blowing bubbles!) among the constant jabber.  Her biggest trick right now is being a copycat!  If we clap or say "yea!" (or she hears clapping on tv) she will clap, even if it means dropping everything she has in her hands.  She waves "bye-bye" if you give her enough time to consider it.  If I blow raspberries with my lips, she will, too.

Getting mobile at therapy
She can pivot and rock on her hands and knees, but hasn't gotten up the courage to go anywhere just yet...and that's good, because once she starts, there'll be no stopping her!  She likes to stand up, sit down, stand up, sit down holding our hands, and can almost push herself to sitting from laying down.  She loves to take baths and swim, and now helps turn pages in books rather than just chew on them.  She thinks it is hilarious to throw things on the floor (thanks to Daddy!) and to pinch and pull hair (not fun for Mommy!)  We've really hit the point where we have to keep an eye on her because if there's a way, she will get into anything!  We're seeing some gradual improvement with eating; still very dependent on the g-tube, but she is more willing to eat from a spoon, more interested in finger foods (Annie's Graham Bunnies are the current favorite) and even attempts to drink a little water here and there.  All in all, this month has been just as busy for her as it has for us, and we are never bored watching her grow and develop!  Before we know it, her birthday (and our big blood drive!) will be here!

Relaxing pool-side
No glasses are safe around Scarlett anymore.
This morning, crashed in mommy and daddy's bed watching Sesame Street after she woke up extra early.
Over the weekend, we got to go to my friend Wendy's wedding.  Scarlett was pretty good, despite the heat, and had fun listening to the music and clapping as people walked down the aisle.  The real fun started when Grandma and Grandpa came to get Scarlett, and we got to stay for the rest of the reception baby-free!  Other wedding guests managing their own babies were quite jealous!
Dressed up!
A quick shot with the bride!
However, our days are not without incident:  last night, as I went to lay Scarlett in bed, I felt a large swelling of fluid around the shunt valve on the back of her head.  It caught me off-guard, since the neurosurgeon had just seen her to adjust it a few days before.  We had the joy of calling the on-call doctor (who turned out to be the main surgeon) at 10:00 last night.  It took nearly 30 minutes for him to get back to us; as we waited, in the worry and anxiety, we planned out how we would deal with taking her to Oakland in the middle of the night, and getting me to work in the morning.  Luckily, the doctor decided he could wait to see her until the next morning, so we got to sleep.  This morning, it was decided to dial her shunt back to it's previous setting, and give it some time.  We're on watch for any change, but so far, it's still just a squishy lump on the back of her head.  We'll see where it takes us.

We still have a ton to do as we pack to move and learn to manage a working mommy, so please excuse my long gaps between blog posts!

Monday, June 11, 2012

Our First Button Change

We've been wildly busy over the last few days, and it doesn't look like it will ease us any time soon!  I started school today, which went very well.  Scarlett is enjoying her time with Daddy and Grandma, though getting her to nap has become challenging; she's suddenly become pretty picky about being at home and in her own bed to sleep, and only certain pacifiers are acceptable.  And the move is on:  the real estate agent suggested we have the condo on the market as soon as possible, which means Chris, Scarlett and I need to get out of the way!  We've already started to pack some things up and taken down all the pictures from the walls.  I'll be making a call to a local cat rescue, too.

Last night, we decided to enjoy the summer weather with the family and go swimming.  Scarlett had a fantastic time!  She LOVES water, and had a great time kicking around in her new floaty seat.
She even let her cousin Caleb borrow it for a few minutes!

When we got back home, it was dinner time, but for some reason we could not get her blended meal to go through the "button" (external portion of her g-tube).  We tried everything we could think of, but it was jammed.  This meant we had to change it.

You'd think we were used to this stuff by now, but I was not happy about this.  It was a nearly new button, changed by the doctor just a few weeks ago, and it should have lasted at least a few months.  However, I have been told that the buttons don't last as long when you are using real food.  It didn't seem like it could possibly have been damaged so quickly, but we had to do it.

As my dad took over the BBQ, Chris and I set out all our supplies and talked ourselves through it a few times.  We tested and retested the new button.  Then we counted down, held our breath, and went for it.  Changing the button requires deflating the small water-filled internal balloon, pulling the button out, inserting the new button through the hole in her abdomen into her stomach, and finally inflating the balloon to hold it in place.  All the while, stomach juices are oozing...yuck!

Well, we got it done with very little ado.  And the culprit of the malfunction?  A strawberry seed!  Something so tiny, but it somehow survived it's journey through the monster blender and caused enough of a blockage to prevent any further fluid from passing through.  Since berries are in season and a favorite in our house, we will make sure to strain berry blends from now on!

Tuesday, June 5, 2012

Big Changes

We are gearing up for some big changes around our house.  For once, it really isn't about Scarlett.

First, I am going back to work.  Not full time, and only for a few weeks, but it's work.  I will be teaching a kindergarten Head Start class beginning next week. I'm excited to get back to the classroom, and to work with kids again. It's a great opportunity to get my feet wet in a classroom again, as well as a foot in the school district's door for Fall hiring.  I haven't really worked (for pay!) since I went out on maternity leave in 2010, and we have decided it's time I start looking into going back to work, at least part-time.

The challenge, however, is that this is the first time in two years I am not available full-time to chauffeur Scarlett to the necessary appointments.   Though she's doing well in all areas, she is still very busy - 5 therapy appointments (2 OT, PT, 2 hearing/speech) each week, plus regular visits to all the other specialists.  We're hoping that most of these can be moved to the afternoon so that I can still attend regularly; I'm really not ready to be cut out of the loop.  In addition, Scarlett can't exactly come to school with me.  Since my mom works for the school district too, she will be off, so she will watch Scarlett whenever Chris needs to work in the morning (he's still at Starbucks, so he works either the 4am opening shift, or closes until 8.)

Amidst this, we are gearing up to move.  We've been talking about it for a long time, and it's still in the early phases, but there is no way around it any more.  Sometime over the summer, we will be moving across town into my parents' house.  It's not ideal (for them or us) but we have all agreed that it's the right thing to do to get us back on track for a better future. 

We've lived here for nearly six years, ever since my parents first bought the condo we rent.  We had both graduated from college, and were ready to move closer to our families.  We never imagined living here this long, especially with a baby.  Now, thanks to the bigger issues in the world, the condo is no longer a good investment for my parents, especially with us not able to pay much in rent anymore.  I'm still not sure what the plan will be, but the real estate agent comes today to see the place and give her recommendations for next steps.  No matter what she says, we are packing up.  We need to get back to regular work, save some money and try to recapture the dreams we had for ourselves. 

It's distressing, to say the least.  We never thought that we would be moving back in with parents after nearly 8 years of marriage, 7 years of college and with a child, but life had dealt us the cards, so we just have to play them as best we can.  We are using this opportunity to really clean out our belongings - many trips have been made to local thrift and consignment stores - and consolidate to what we really need.  It's amazing how much two people can accumulate, yet hardly every use.

The most difficult aspect of moving so far is what to do with our cats.  My dad is very allergic, so no cats at their house.  Coincidentally, he's also allergic to dogs, but ours is a poodle mix, which means he doesn't shed, so he passes the allergen test.  However, our two cats do not.  We've had them since they were kittens, and now we are struggling to find them new homes.  I am trying to avoid having to take them to a shelter or a placement agency.  If you are in the Bay Area and know someone who could give an indoor/outdoor cat a good home, please let me know.

We are trying to keep in mind that this is a temporary move, and one that will hopefully give us a jump on a better future.  We have always had big plans for ourselves, and would like to get back to them.