Where We've Been...Where We're Going

While 2011-2013 were some of the toughest years for Clayton, 2013-2015 were the toughest years for me personally.  I found myself reeling from the repercussions of all we had been through.  Something I have openly talked about before.  I have now been on my anti anxiety meds for four months and I am truly feeling much more like myself.  The worries that were consuming my life over the last two years I can once again handle in a normal way.  The physical pain that has consumed my body has eased, but not completely dissipated.  The neurologist expected that though she found the source of some of my pain, that as the anxiety medicine corrected the over utilized chemicals in my brain that most of my pain would subside since the chemical imbalance was responsible for the fact that I could feel so much of the pain I was feeling.  So I am optimistic that life is slowly getting back to normal.

Clayton is doing very well. He turned 7 in November!  Craziest 7 years of my life!!!

We have an upcoming trip to Dallas to see his dentist and orthopedic surgeon.  Over November and December we checked in with his nephrologist, pulmonologist and oncologist and got good reports from everyone.  While we did not do cancer scans, we did lab work and a physical exam and the oncologist said all looks well.  We will do scans in a couple of months.  As far has his kidney goes, we are still stumped.  This time last year we were having weekly checks and being prepped to go on the transplant list and now nothing.  His nephrologist's words at our last visit were "don't kick a skunk".  Translation, this is a blessing, don't question it. He literally said he had no explanation.  So we'll keep doing what we're doing and asking for prayers and hopefully this sweet boy can make it to his teens or beyond before ever needing that transplant.  No way to know...For now we are just greatful.

Pretty sure Clayton had a great Christmas as he was able to further round out his Pixar Cars collection.  His all time favorite thing.  An unexpected thing that happened over the holidays was that he started showing an interest in Star Wars.  I think it all started from Phineas and Ferb's Star Wars episode and the fact that Disney XD has Star Wars Rebels cartoons so he sees the previews.  But he is getting into it for sure.  He even picked out a mini Darth Vader and Luke at Target.  He seems to like Darth Vader best.  And my nephew got a R2-D2 at Christmas that Clayton was really into as well.  This new interests makes me feel like he's growing up and maturing slightly. :((: 

He keeps growing and developing and his list of words is steadily expanding.  It's crazy that for so long I longed to hear him say "mama" and then the way it happened was so gradual that while I noticed, it wasn't the reaction I had always anticipated.  2015 was definitely his year for words though.  He has made huge strides.  He even spent the holidays saying "ho ho ho terry tismas". That's not a typo, that's how he says it. :)

He just started saying "hey" this past week, but has had bye-bye mastered for a while.  He is also starting to string words together making phrases and short sentences.  He doesn't do it all the time, but he does it.  His "go" and "stop" are the freaking cutest thing EVER!

All in all, we are doing pretty well.  We also snuck in a trip to Disney this past October in our camper.  Oh yes, I'm not sure I ever revealed our camper before?  Well last February we used our tax return to get a small 2005 16 ft camper off of Craigslist for $3500.  It needed/needs a little TLC on the exterior like caulking and removing and resealing one window, but there was no major water damage and the inside was in pristine condition from a clean family so we jumped in.  We needed an inexpensive way for our family to get away now and then and have family time.  We have too much stress in our lives not to take breaks from time to time and since hotels, condos, cabins, resorts, etc. aren't in our budget, we had to look for an alternative.  And we found it in our little camper.  I plan on "glamping" it up gradually.  Using fabric I already had, I have already recovered the cushions and my mom sewed new curtains and I'm painting the walls hoping we can one day replace it with beadboard and make a sweet little cottage style camper out of it.  Like everything in our life it's a slow process.  But it's paid for, not a money pit and as long as we take care of it, will be able to provide us with lots of family fun for many years.

Clayton LOVES the camper.  It is definitely HIS camper.  And he loves getting away with us and having us all to himself with no distractions. 

So back to the Disney trip...we had a great time, but admittedly it was a long trip so next time we'll do five days instead of seven.  We were determined not to have a vacation that was a lot of "work" as everyone knows Disney can be, so we had a lot more downtime then we needed.  We used Disney rewards points to pay for our stay and tickets.  Our campsite cost less then $500 for our stay.  Beyond our stay at Disney's Fort Wilderness, we went to the Mickey's Not So Scary Halloween Party and had one day of hopper passes (which we only used at Magic Kingdom).  We realized Magic Kingdom had the most for Clayton and it was just a boat ride away, so we didn't stray from there even though we had planned on going to Animal Kingdom too.  Clayton rode the barnstormer like 5 times, Peter Pan twice, thunder mountain once and seven dwarfs mine train two or three times.  The boy likes him some roller coasters.  We had to try and stick to the milder ones for him though and we worked hard to position him and our arms in a way that protected him back.  Totally worth it though!  We also visited the other resorts to take advantage of their fun offerings like Radiator Springs...Clayton's favorite.

Oh and for the Halloween Party I was Mike Wasowski, George was Scott Squibbles aka Squishy and Clayton was Sully.  And the earmuffs you see in the pics were something I have thought about getting for a while and I took the plunge when I read about another mom using them for her autistic child at Disney.  They worked great and made everything more manageable for Clayton.  He would not take them off! They helped eased his anxieties for sure.

Last, but not least, we've also been chipping away at the house.  In the year and a half since we moved in, the only thing we have done to the inside is brick our fireplace and add cabinets in the laundry room.  We've mostly been working on the exterior.  Over the past year and a half, we've managed to finish caulking the exterior of the house, stained the two porches, covered the back porch, as of Thanksgiving, we finally have the whole exterior of the house painted and to my huge relief as of Christmas we have added the lattice around the bottom of the house between the beams.  In between all of that we fenced our back yard, built a permanent chicken coop and run, got our garden area squared away, made a playground for Clayton and are continually working on landscaping our backyard (most of which is necessary because it is on a slope or at the bottom of a hill and so we have to landscape properly to prevent erosion/washing away, etc.  All of this we are doing on a pay as we go basis though so we can only do so much at a time.  I'm pretty excited that this next week or so we are finally going to start covering our front porch!!!  Thank you Jesus!  That has been a long time coming.

But now comes a new year and the opportunity for well organized changes.  Obviously changes can be made whenever, but I think there is something to feeling like changes are organized by the new year and a clean slate.  So we are definitely making changes.  We have gradually made changes in our lives since Clayton's cancer, but this year will be the year of swift and dramatic changes in our lives.  Things from how we eat to how we live.  So I'm excited for change and moving forward!