Tiny Salutations

Tiny Salutations


Monday, November 10, 2014

Yellow House and Adorable Pumpkins

First, tiny house news.  We have been working on the trailer.  Still.  I know it seems like we have not gotten anywhere, but this stage is a lot of work for what feels like little visual difference.  We also have a lot of days taken up with doctors appointments and bad days, so we don't get to work on it everyday.  The next step should look like an improvement.  And should start looking like a house! 
We have ground and sanded the trailer and painted it yellow.  When we first brought home the trailer, my son called it "a house". Then after demolition, he called it "a broken house".  And now he calls it "a yellow house".  Yellow house sounds like progress over broken house.

Now, health news.  L is doing awesome.  *Knock on wood*  He has been in Sunday school several times now and has not gotten really sick.  Some sniffles, but no fevers, no infections, nothing severe.  Thank God!  He has been making improvements in development too.  He is still quite sensitive to sensory input and has weak, uncoordinated muscles, but it is to the point where I can breathe and relax a little. 

My health has not been so lucky as L's.  I have added a few more specialists and have had lots of testing and will have lots more.  My kidneys are being very closely followed, as it seems I have begun lupus nephritis.  I am in the very beginning stages of it, and it is not that bad yet.  I need to try to get off of prednisone (a steroid- the only medication that has made me feel better, but has nasty harmful side effects), but in decreasing the dosage I have come back to being in so much pain.  I can't sleep I am in so much pain.  I wake up in the night several times feeling like all of my joints in my body are about to burst.  My hands are even more disabled.  I can't brush L's teeth often times, because my hand will cramp up in pain and will simply not respond to me anymore.  And teeth brushing is not a vigorous activity.  The same type of pain happens in my hips, knees, ribs, elbows, neck- you name it, it hurts.  I am going to exchange or add a more aggressive chemotherapy.  I hope that will settle things better and give me some of my life back.  Although while there are benefits, there are also big risks.
I have tried to stay positive, but sometimes, in crippling pain, it is hard to see past the moment of pain you are in and to remember that this moment of pain is worth it to experience a moment of happiness with my family.  There is one thing I have been doing for quite a while now, since I've been really sick, that helps.  I try to capture a beautiful moment in time every day.  What I mean is- do you ever find yourself feeling like you wish you could remember a moment forever, exactly the way you see it, or that you could stop time in a moment?  I try to find one moment each day that is so beautiful or so filled with love that I try to commit every minute detail to memory.  It might be a perfect smile or hug from L, or horses running through the fog on the road to our house early in the morning, or a perfect leaf, or a really clear sentence L made.  It is generally something very small that would usually go unnoticed, but I try to hold on to that moment so that the next time I am in terrible pain I will have lots of moments I can go back to to remind myself why this is worth it.

As some good news though- I got some hearing aids.  They say it will help and that I am not even aware of how bad my hearing is since I have had trouble so long that I have adapted to live with it.  Still working out the kinks, but I'm hopeful!

Last but not least- Pumpkins!!!  The pumpkin patch and the county fair are my two most favorite days of the year.  It is just a sweet family tradition that we all get excited for and always treasure.  This year we went to the pumpkin patch twice.  The first time, we went with my Dad, my siblings, and my niece.  It was near Seattle and had a sweet petting farm, but a small pumpkin patch and Seattle prices.  Still it was a lot of fun to get to bring L with his cousin. 

Those Seattle pumpkins were rotting by the time we were carving them (only about a week later).  So we went to our usual spot- Schuh Farms.  I love this pumpkin patch.  They have a nice big patch and lots of interesting pumpkins for sale too.  They have some farm animals, but I don't think you can pet them.  They also have a neat farm playground and another patch and corn maze across the street.  And we got nearly the same amount of pumpkins for a tenth of the Seattle price.  So I suggest if you want to go to a pumpkin patch next year, go look out in farm country and I think you will be pleased. 

L was an adorable pumpkin for Halloween this year.  He had an appointment at Seattle Children's that morning, so we went trick-or-treating with my Dad on the way home.  He loved it so much.  Unfortunately, out of his entire haul, he could only eat 3 pieces of candy due to his dairy allergy.  Being strict with his diet has made a huge impact on his health though.  We hid the candy, and he didn't care at all since he hardly eats candy anyways. 

Stay tuned for the next step on our house- the floor!