Nash Family Blog

Frustrated

The city has denied the permit for us to put a fence up in our backyard.  This has me extremely frustrated this afternoon.  I don't want to close myself off from my neighbors.  Quite the opposite.  I want to have good relationships with them and have our kids play together.  However, we have a steady stream of traffic through our backyard with older kids (and adults) passing across to the next street over.  This, to me, feels unsafe when I'm turning my very young children out to play.  They must be supervised.  With a fence at least I can put them out and watch from the kitchen/living room and feel pretty good about them being out there.  

I feel so......ugh.

Things On My Mind

I don't know.  I've had a lot of things on my mind lately.  No the least of which is this stupid swine flu vaccine that they are in such a hurry to develop.  From the way they talk you would think that it is going to go nuts and kill off half the planet.  So the rush is on to get a vaccine out before fall.  My concern is for Leah.  Not that she'll contract the swine flue but that they will want to vaccinate her because of her Leukemia.  

We went through this last fall when they gave her the standard flu shot while she was sedated for a procedure and without my permission.  Actually, I had told them that we don't do flu shots but they did anyway.  Man were we hot.  And she managed to spike a fever (of course, according to them, it wasn't related to the vaccination) and landed herself back in the hospital for a week.  So I begin to wonder who knows this child best?  Clearly I do.  I have been with her since conception, I have seen her get fevers with every vaccination she's ever gotten.  But none of that matters and my word is worth nothing as her mother.  

I'm sure that they will try to give her the flu shot again this fall - and I'm going to put my foot down on this.  My fear is that the government is deciding who gets the swine flu vaccine and that they will override my rights as her parent.  Hopefully it won't be as big of a battle as I fear it will be.

Ok, I'm getting off my rant and going to get the kids up from naps.  I have more on my mind, but if they sleep any longer they'll be up until 11.  That just won't do will it?

Life in Photo

Playing Super Hero...

The girls have new Little Mermaid nightgowns...

Playing in the rain...

so sad...

the lipstick application needs a little work...

And finally....how could you not love this face?

Back to Normal

So after 6 days of really feeling miserable, Leah has finally bounced back.  Today she got up and it was like someone had flipped a switch in her.  It has been a joy to watch her run and play and laugh all day.  We even made it to the park where she had a blast.  It is good.  Now we just need to get back on track with homeschool....

Birthday

Happy Birthday to Me!

Glad This Day Is Done

I am so thankful to be finished with this day.  Leah has felt absolutely miserable today.  She did this the last time she had a spinal tap (12 weeks ago) and felt this way for about a week.  I'm praying that it won't be that bad this time.  When she's like this - and it's not her fault, she feels awful - she demands 110% of me making it nearly impossible to manage the other children.  It has to be a combination of the methotrexate that she gets in her spinal fluid and the steroids plus the 2 other chemos that she takes.  And I feel like I'm making it worse every time I give her more pills to take.  The other kids suffer in that they don't get much of mom and unfortunately the tv becomes my babysitter.  I did try today, while Leah was watching a movie, to get down in the floor and play with them for awhile so they wouldn't feel completely alienated by me.  We had some nice ride on mom's back, tickle, wrestle time.  Their laughter filled the house and lightened the mood in the atmosphere for a little bit.

Aside from Leah being ill, I had a comical start to the day.  Well, it wasn't comical at the time but I guess it is looking back on it.  Aaron was up at 5 am - I am so not a morning person - which is highly unusual for him.  I headed downstairs to make him a bottle only to find a happy parade of ants on my counter and all throught the sinks.  So I left them to eat and headed back up to feed Aaron while making a plan in my mind for waging war against the ants.  I got to the top of the stairs and Aaron's diaper decided to leak (I hadn't had a chance to change him yet) running down my shirt, my pants, and into my shoe.  As I stared at my foot in disbelief Leah came out of the bedroom all in a steroid panic because she couldn't find any panties that were comfortable.  Ants, peed on and a child in a meltdown and I haven't even made a cup of coffee yet....that just isn't right.  I hollered at Adam jerking him out of his slumber, quickly ran down my list of issues, deposited Leah with him and ran to clean up the baby.  Things slowly got better.  Leah fell back asleep with daddy and I was able to obliterate the intruders and make a cup of coffee but getting out of the dirty clothes myself and getting a shower didn't happen until well after 10:00.  I'm laughing now, but this morning it wasn't so funny.

So, now I'm waiting on my night owl, Isaac, to fall asleep so that I can go decompress for a few minutes before I head to bed.  It is getting quiet in there, so I think that is a good sign.  Off to find something chocolate....

God's Kindness

What a relief to have today behind us.  Leah's was a little worried about her procedure today but handled it with grace.  Her counts were remarkably high and we are extremely grateful for that.  So no lab draws for 2 weeks.  Her bandaids are off (she hates them) and her back was a bit sore this evening but the tylenol we gave her seems to have taken care of that.  Her spirits are high and we are now officially done with day one of our 5 day steroid pulse.  Today was the roughest day of the next 30 days because she had 5 doses of chemotherapy today.  

Going to clinic these days is a rude awakening for me.  I think it becomes as emotionally draining for me as it is physically draining for her.  Since we only go once a month, the other 29 days we live a semi normal life here at home.  And even though I'm administering medicine to her several times a day all month long, I almost at times forget the seriousness of what we are dealing with.  Leah lives her entire life, as my husband put it, blissfully unaware.  That too is God's kindness.  On clinic days though I tend to snap back to the fullness of the reality of our new life and it is a little hard.  As someone once told me, how do you eat an elephant?  One bite at a time.  How do you beat the snot out of Leukemia?  One day at a time.  

Leah was playing her Leapster Disney Princess game tonight and gained enough jewels to earn a new tiara and advance from little lady to mistress fair.  That had her excited.  But you should have seen her face when she heard the game say that once she earned enough jewels she would get her next tiara and become a little princess.  She screamed and hugged me so tight.  In her world you can be a princess when you grow up.  I think she already is one.

Prayer for Leah

Today we head back to clinic for the start of our second 12 week cycle of treatment in Maintenance.  It's hard to believe we are already 12 weeks into Maintenance but I'm thankful that we are that much closer to done.  

It's going to be a long one today since she will have a spinal tap to get her Methotrexate chemo.  She always dreads these days but we've gotten her a present - all wrapped in princess paper - to open as soon as she's done in hopes that the distraction of the gift will help her cope with the long day.

Pray that God will grant her little body the strength to endure today as well as the days ahead since we also start another 5 day steroid pulse tonight.  I'll post an update on her as soon as I can - it may be tomorrow.

My Favorite Thing...

...about our new home....

Our icon corner is set up in the corner of the first room you enter when you walk in the front door.  That particular room always smells like insense, like Church.  So whether you are coming in the front door or passing through to go up or down the stairs you are forever subtly reminded of Christ and the Church.  

A Beautiful Morning Despite the Rain

I got up very early this morning (6 am) because the kids had been getting up so early with Maw-Maw here and I wanted to get my shower before they arose.  The good news is that a storm rolled in and it is now 7:15 and they are still in bed.  I sat downstairs for a bit and drank my coffee while watching the lightning and rain and then read a few chapters in my book.  Mornings like this are good.  WIth the chaos of 4 little ones a few minutes of quiet really helps me to get my mind clear so that I can tackle the day.  And with the rising sun the storm is subsiding and I am ready to start the day.

Last night was mom's night out and we went to Pearl's house to make sushi.  The company was great, the plum wine was strong and the laughter was flowing.  I learned that making sushi is not nearly as hard as I thought and creating your own roll and eating it is even better than ordering it in a restaurant.  I'm going to have to do this at home for Adam soon.  

Off to finish my to do list for the day before the kiddies wake....