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Sunday, June 17, 2012

Happy Father's Day

You'd be hard pressed to find a better daddy out there for Avery.  The things he has given up, sucked up, and dealt with to make sure she has whatever she needs and wants is enough to make you cry.  The strength it requires to carry Avery and I down this road is ginormous and he bears it with the best attitude and a smile on his face.  This year marks our 6 year anniversary and I am so proud that he is the man I married and the father of all 3 of our children.
Today we took Daddy to breakfast and then to Babies R Us to look for a new double stroller.  We forgot how complicated those things can be!  After a lot of strolls around the store and some test driving we finally found one that will let Avery sit or stand and have room for Emmett's infant seat.  After that we came across booster seats and figured out that Avery is big enough to move into a booster.  This is fantastic given the fact that she lays half reclined in her car seat and it proves rather messy for drinking her Starbucks in the morning.  The booster sits more upright and gives her a ton more leg room.  Who knew?!


Sunday, June 3, 2012

Visits to IA & MN

 Grandpa Randall and My New John Deer Hat
 All the kids at the Leaders Pond
Hanging out with my GJ

Me and Great Grandpa

Good Lord Nana makes me laugh!

I love the petting zoo

Well we've had a busy couple of weeks visiting people in Iowa and Minnesota!  It's been just shy of a year for visits to both places and it was good to get home.  We get anxious being far away from her Dr's and the hospital but we managed to survive unscathed.  Close call though as Avery began complaining of pain on Friday morning before me left for MN and sure enough she had ANOTHER UTI.  (or the same one that just won't go away).  Luckily we got her in to her pediatrician that morning first thing and they put her on an Antibiotic as a precaution in case. 

It was great to see all of our family and friends in both places, although the long drive to both places proved long and uncomfortable for my swelling feet and back.  We've decided no more travel until after Emmett arrives and our next trip to Memphis at the end of July may have to be via plane. 

Avery has started going to therapy all day - 2 days a week.  She has really been enjoying it and we've seen some definite strides in her independence.  She prefers to get herself dressed in the morning and is getting so much better with following directions.  Now if we could kick the UTI's I think the potty training would be moving forward a little faster.  For now, we've added the runs to the list of crap to deal with (thank you antibiotics) and are simply hoping to get rid of that within the next few days.  We have also noticed she appears to have some issues with reflux so we started her today on Baby Zantac.  We'll see if that helps a little with her eating.  We have managed to get her up to a whopping 30 lbs - something we never thought we'd see when we started this journey 30 months ago.

We went to see the St Jude Dream Home in Raymore today.  It is of course, beautiful.  Over 3000 square feet and begging us to move in....We bought our ticket thinking that with all the chances we have of anything we certainly seem to end up being that 1:1 maybe it will work for the St Jude Dream Home Kansas City good luck this time and we'll be the family drawn out of the hat to win a house!  The drawing is on June 24th and will be announced that day.  Tickets are $100 and the house is valued at $600,000.  Take a peek at the website for info on where it is located, how to buy a raffle ticket and to take a virtual tour.  It's open on the weekends as well for tours and is totally worth the drive.  Just don't get too attached -- as I mentioned earlier, we already plan on winning and there is a craft room with my name on it. 

St Jude Dream Home Kansas City

Jeremy and I are hanging in there.  Some days are better than others.  Sometimes I find myself being snapped back into reality after days of forgetting the world in which we live in.  This past week was not a great week for a lot of the kids we have met along our journey.  Updates are posted on Facebook and their Caring Bridge sites and the fear slams back into my heart instantly.  Something that will forever be part of our lives, I know - but so incredibly petrifying each time it creeps back up.  We are 2.5 months off treatment - the last possible treatment and no where close to being in remission.  Tumors are still present, and hopefully the radiation is still working.  The end of July is looming closer each day and with it will come the fear and scanxiety that only a Cancer Parent truly understands. 

We are looking forward to summer with Avery and all the new things she will get to see and do.  We hope to see lots of friends again and to spend some time in the sun.  Both Avery and I are a little too pale for the liking.  As her hair comes in we'll be able to venture outside a little more and spend some time in the pool.  Her aquatic therapy has really helped in getting her to relax more in the pool.  We are hoping to add Hippotherapy (horse riding therapy) as well this summer if we can get in to it.  Daddy is a little more excited about this one than I am, but we'll try it.  Hoping to see an improvement in her Ataxia as we continue with these day sessions at therapy, but radiation has really wiped out her energy levels.  A little normal is what we need - here's to hoping that its what we get.