November 28, 2016

Speaking With Clayton

Clayton is ridiculously smart.  Waaayyyyyy smarter than anyone ever gives him credit for.  George and I included.  He blows our mind on a regular basis with the things he reveals to us that he understands that we never realized.  George and I are always having to remind ourselves to watch what we say because he is ALWAYS listening.  When you think he's not listening...he is.  And his hearing is impeccable.
We started realizing just how much was going on inside our nearly silent child's mind about three years ago.  He started using his iPad to match words with things.  For example, if it started raining outside, he would walk to the window and find something about it raining on the iPad.  Or after his dental surgery a couple years back as he was laying in recovery, he started playing a Sesame street video about visiting the dentist.  While on vacation with my parents, he started getting a stomach bug and before we knew what was going on, he used his iPad to tell us all he didn't feel good.  This let us know that he was aware of things around him, but since then, with the growth of his speech we have also seen a growth in revelations about his personality through things he "says" through his iPad and videos on it.  He now targets specific phrases in his videos to tell us things.  George and I feel like the grinch where his heart grows.  Every time Clayton "tells" us something and reveals himself to us, our hearts grow.  I swear we can feel it too.  Because that's the thing... Clayton isn't just telling us things, but he is showing us who he is.
Here are a few of our favorite recent moments...

While cruising in the golf cart at Fort Wilderness, he wanted to go shopping two different times/days and we told him no to which he "said" through video clips...

1st time..."Disappointed"

2nd time..."I don't like you very much... but I like you"  I'm guessing I was the bad cop here?

And then recently, after days of being sick, he was ready to get out of the house, but I was sick and told him no, to which he responded through a video clip,

"But mother, I don't want to be cooped up all day."

I love these moments because it tells me so much about him.  (A) it tells be how dang sassy he is (B) it tells me how intensely complicated his mind is that he is able to recognize the the meaning of these phrases and the situations to which they apply and recall exactly where they are when he needs them.  I mean seriously, he has this enormous arsenal of phrases memorized to know where they are within his video collection when he needs is crazy!

I have been meaning to talk more about this side of Clayton and our lives and haven't gotten to it yet and then we watched a 20/20 episode,  "Finding Owen: A Boy's Story", on Thanksgiving that had so many similarities it was eerie and pushed me to go ahead and show this side of our lives.  I think it is important for people to see this side of children like Clayton and recognize that just because they are different (and sometimes nonverbal) does not mean their brains are empty and they are void of feelings.  There is so much there.  And these children have so much joy to offer to those around them.

I have never been around an autistic child before Clayton and even now I am only around him, so when I see or hear these stories I am immensely intrigued.  I love hearing about kids similar to Clayton.  Especially learning how children like him interact with the world around them because it helps me to know if I'm on the right path or not.  Fortunately, I feel like I am.  I make a point to surround him with things he loves not the things I love and through the stories I have heard this is super important.  I also know from my own experience that while Clayton might not pay attention to me or other people, he will pay attention to his "characters".  So I use that to help him learn as best I can.  I also have been reassured through other's experiences that we are right in monitoring what he watches and what "characters" he has access to is important as well.  For example, George and I do not encourage SpongeBob and do not allow it at the house on TV or through toys.  If he is going to form attachment to and love his characters so much we want to open doors to the right characters and close doors to the wrong ones.

Anyhow, just a snippet of life with Clayton...

November 20, 2016

November Update

So my last post was kind of pathetic.  Sorry about that.  I was and still am exhausted.  As soon as we got home from Orlando, everying rolled right into caring for a sick Clayton and a sick George.  Both of whom ended up having to go to the doctor a week ago for antibiotics. 

 And then of course, I got sick too.  George is feeling pretty good now, Clayton still has a little cough and runny nose and since I was the caboose on our snot train, I'm lagging the most, but should be in good enough shape come Thanksgiving that I can taste my food!  Thankfully, I think we are on the good side of things now and I'm trying to recover from this emotionally charged past month.  

Oh and then our washer has been acting up and last night it flooded our laundry room with a half inch of water.  While me and Clayton were home alone...lovely.

And finally, George is compelting his final three weeks of school ever!!!!  He will soon be a college grad and the last few weeks are filled with lots of papers and writing.  Which is a team sport around here because English was not George's favorite subject so I do his proofreading, spellchecking, etc for him.  Everyone pray he makes it through these final days.  We have been through a lot together.  In fact, we have been through many of the kinds of things they say break couples apart.  Well let me just tell you, nothing has come as close to "breaking" us as his school.  I am a nerd.  Books, reading, school, I'm just a proud nerd.  George...not so much.  He wanted his degree, but man it has been a struggle to motivate him some days (for good reason because he works full time too and then of course there is Clayton).  We are just so polar opposite when it comes to learning that he makes a crumby student for me and I make a crappy tutor for him.  It has not been the best combination.  But I'll be dang, he is almost done.  Thank you God.

My mom got to see a picture of Clayton's troubled renal area that requires him to have a stent and she can tell you just how mucked up it is.  She couldn't believe the number of staples that where all around that area causing some of the problems.  The staples and the scar tissue are just messing him up.  The doctor was very pleased with what he was able to do in this recent surgery though.  This will likely be the last stent before his major kidney surgery.  The doctors will probably try and get this stent to last a year to a year and a half before making their next move.  Typically stents don't last that long in the renal system, but Clayton handles them very well.  I was very pleased with our Orlando experience and that makes me feel much better about major surgeries there in the future.  I will say this though...the hospital was only a couple blocks from the Pulse nightclub and driving by it was quite eerie.
We now get to have a quiet holiday provided there are no emergencies.  Our next appointments will be making a trip back to Dallas.  That will be in the new year.  So we can breathe for a little bit and soak in the holiday merriment.  Clayton is diving into the winter wonderland spirit everywhere you look.  I saw Santa in his sleigh being pulled across my counter by two beagle beanie babies just last night.  And don't get me started on Frosty.

Now that my sense of smell and taste is returning as I'm starting to get better from my cold, I've dived into cooking again.  I love cooking, but since my last pregnancy, it has not been the same for me for some reason.  This is the first time I feel like me stepping back into the kitchen.  Yesterday, I made some homemade fresh mozzerella, tomato and basil pizzas.  And today, I made homemade artisan bread and a tomato and onion pie for lunch and homemade spaghetti for dinner.  I love to be in the kitchen cooking, but I truly do have to be in the right mindset.  

Feeling good again.

November 8, 2016

Home From Kidney Adventures 2016

We're home!  Made it home Sunday evening.  What a trip.  We actually went down on Saturday, October 29th to celebrate Clayton's birthday early in case he was in the hospital later.  We camped at Fort Wilderness and enjoyed a character dinner with Clayton and Mickey's Not So Scary Halloween Party (our only visit to a park).  And on Halloween day we relaxed in Fort Wilderness and enjoyed the festivities while cruising around the Fort in a golf cart.  More on that brief vacation side of the trip in another post though.

After two days of forgetting our reality, it was back to business on November 1st.  George, Clayton and I went to Arnold Palmer and did pre-admission paperwork and testing and then went to see the doctor.  While I had previously met this urologist, George had not.  I was glad he got the opportunity to see what I saw.  This doctor is a rare one.  You just know he is special when you meet him.  I think it made George feel better meeting the man who's hands would be doing such important work on our child, especially because George wouldn't be there.  Since George is getting a new boss and all, we decided it was best for him to come home and for my mom to stay with me (my mom and stepdad joined us on the trip...but stayed in a cabin as opposed to camping).  So George left the day before the surgery.  

Once at the hospital,I asked Clayton to smile and this is what I got...

The reality was this...

He was mad at me and shaking he was so nervous.  Once out of surgery, it was a slooooowwwwwwww process waking up.  I had to try getting him dressed and everything just to get him even slightly awake.

But once he woke up, it wasn't long until we saw this...

and then the fevers started.  Yes I say fevers because they came a went a bit as we battled them with Tylenol.  Then my mom went back to the camper and I stayed the night with Clayton.  I kept trying to encourage him to pee, but he was obviously in pain and wouldn't in the beginning.  Finally, I put him to bed hoping if I woke him up a while later he would be so groggy, he would not think abut the pain.  It kind of worked.  He legitimately tried to pee I felt, but didn't get more than a drop out.  This was 12 hours after surgery in the middle of the night.  Sadly, this meant we had to do a catheter.  We had two nurses try and God help, all I could do was tell Clayton how sorry I was.  I felt so horrible.  I have never felt that crumby with him before.  He has come so far and has such a heightened awareness of everything around him and he does truly try to cooperate for things and after all of his cooperation to have to turn around and do this made me feel like total shit.  I started bawling while holding him down and repeating over and over how sorry I was.  The nurses probably thought this is why we don't want parents around; they can't handle it.  A sentiment we have heard expressed before.  Completely untrue though.  I can't tell you how many times I have had to hold that child down while he screamed over ports, catheters, you name it.  And bawling is not a normal part of my routine.  This time was different.  It felt like Clayton had held up his end of the bargain and somehow I had dropped the ball on mine; even though I know that wasn't the case.  Of all the things we do with Clayton and all the things he now cooperates with, he remembers catheters from the past and wants his "boyhood" left alone.  Doctors can't even look at it without him getting all protective.  So to put him through another catheter really sucked.  The only reason he came out of surgery without one was because the doctor felt things went so smoothly he wouldn't need it.  Which was not the doctors fault.  Clayton did not need a catheter with his last stent replacement so there was no reason to assume he would need it now.  Also, our urologists have commented that they like to be cautious about stents and catheters because sometimes catheters can get caught on the stent and dislodge it.
So anyway, the first night post-op (which if I forgot to mention we obviously spent in the hospital) was a rough one between fevers and catheters.  Oh, I never finished...neither nurse could get the catheter in, so the doctor came in around 2 in the morning and placed the catheter himself.  So Clayton had to go through that "trauma" essentially three times.  Not fun for either of us.  While waiting on the doctor, Clayton and I went back to his room and I just started bawling bawling.  The kind where you can't even help being loud cause your crying so hard.  I felt like total crap for having to do this with him after he had been such a champ about everything.  Thankfully, when the doctor got there, he placed a catheter swiftly and that was done.  I don't know the logistics, but for some reason, Clayton is hard to place a catheter in.  This was not the first time nurses couldn't get it and doctors had to be called in.
The next day while waiting to see if we would be discharged, his ViVi got him this...

We had no idea if we would be discharged or not because he had started getting sick the night before surgery and it had progressed.  We weren't sure if they would try and hold him for that or not.  Then he went a spiked a fever when they were preparing discharge.  But they still let us go, knowing we were staying locally for his continued recovery.

So back to the camper, Clayton got to be surrounded by all of his "bay-bees".  Sweet bug just laid there with the discomfort of his catheter.  We hung out for another day, which was incredibly long as we were stuck in a camper unable to do anything.  Sunday, we cautiously headed home.  A journey that was not without it's bumps including some vomiting for Clayton.  All in all, the journey looked something like this...
Mickey seat belted in the passenger, mom in the back sometimes dozing off and Clayton cradled by "bay-bees" and pillows and post vomit wrapped in towels after we stripped him out of his dirty clothes.

An interesting ride to be sure, but Clayton was happy to be headed home.

I got to remove the catheter just before bed Sunday night and we had pee first thing Monday morning!  We have since been recovering from an emotionally charged past month and especially past week.  Clayton is still sick and I'm trying to get him well so we are laying low at home.
And of course tonight all eyes in our house are on the election results.  Crazy times.  On election night eight years ago, I was in the hospital giving birth to Clayton and my life changed forever.  I'm a little scared to see what tonight brings given how dramatically my life changed last time we had a new president (even though it wasn't purely because of a new president, but rather because of my baby man).