It's been a hard days night...

** This is actually Saturday's post...I had some trouble with getting my pictures transferred over -- sorry it's a day late!  **

This week Eric and I feel like we've been working the midnight shift, except we haven't gotten the days off.  We have been in the throes of an extremely alarming, unexplainable, and just plain weird reaction that Cade has had to his new medication.  It has been unlike anything we have ever seen, and the doctors cannot seem to explain it, either...isn't that always helpful?!  I have already told you the basics...and we're mostly still living it.  He just completely lost all impulse control all week.  Thursday morning he was up at 4 am and then continued to be up for almost 24 hours into Friday morning.  This morning he went to sleep around 2 am and was back up at 7.  He seems to be doing better - he was in the bed by 11:30 tonight - which is a huge improvement!  They have told us that the meds should be completely out of his system by Monday.  Let's just pray that that's true.  And then we have to make decisions about what we are going to do as far as meds...we know he needs something for his impulse control, but we sure aren't putting him back on that!

On Friday while I took a 5 minute shower I came into our den to what can only be described as a disaster!  From what I can tell (and also by simply watching Cade throughout this crazy time when he is just plain manic), Cade just began to dump everything...no, I mean everything...he could get his hands on.  It was just as if his motor was completely on full speed and he just couldn't figure out what to do with himself.  Ok, so here is the sight I had as I turned the corner into the den...

Note the cat...wandering aimlessly around the room...I would love to know what he was thinking!

Now I'm quite sure that Kai just joined in on the "fun" -- but you can imagine my shock and horror when I saw this.  After picking my jaw up from the floor, and saying a prayer under my breath that I wouldn't just completely blow my top, we began cleaning up.  I use the word "we" loosely...both boys tried to help but honestly Cade was so out of sorts that he couldn't even focus on what we were doing.  After a short time it just became easier for me to clean it myself.  I did, however, promptly send these pictures to Eric on his cell phone -- yeah, he came home a short while later.

So of course all of this sleep deprivation has transferred to both Eric and I as well as Kai.  I'm sure it's hard to get any sleep when your big brother is running down the halls and crashing into the walls...we have all been a pretty tired bunch this week.  It has been so hard during all of this craziness not to be disheartened by our major setback.  We saw so much progress during our trip to Denver and for the first week we were home...it is so hard to sit back and watch Cade fall apart again just from this medication problem.  I am quite sure Satan is reared back in his chair sipping a drink and just watching what will happen next.  The discouragement is hard, especially when I am so sleep deprived!  But I know I must not let him win...God has done many miracles for my little boy over this summer and I simply cannot crumble under this pressure.  I am really hoping for a good night's sleep tonight, though...I think that will bring a whole new perspective in the morning!

In trying to keep us sane today I decided to do some activities with the boys.  Thank goodness for their daddy...he let me sleep in this morning!  So I was able to muster up enough energy to decorate cookies with them this afternoon.  They love this activity...especially Kai, who I swear is going to be a cook one day! 


Mixing icing colors



Kai put on as much as he could fit on his cookie!



This is the cookie Cade decorated...



and this is the cookie that he actually ate...he cannot stand the icing!



Kai is fussing about his messy hands...this cracks me up since he lives with messy hands!

Our Back to Denver countdown is now 3 days.  I still have a ton of packing to do...it seems a lot harder to get ready to head back out this time.  I think it's because we have so much happening here at home - and that Cade's school situation still isn't nailed down.  I'm praying we can get some of these loose ends tied up before we leave on Wednesday.

The good, the bad, and the ugly

It's been a week since I've blogged...we've just had so much happening here that I haven't had much time to sit down at the computer.  But this week has been full of so many emotions, events, and trials and successes.  We have truly seen the good, the bad, and the ugly!

After the rough road last week Cade seemed to really be holding his own.  We even went to Cracker Barrel as a family last Friday night...and we made it through the entire meal!  That doesn't happen with us very often.  Sometimes it just isn't worth going out because before the meal can end Cade has reached his max capacity with how much he can compose himself.  And add the bouncing two-year-old to the mix...yeah, we're not really a family that you want sitting next to you at a restaurant!  But both boys ate great and sat and waited when they were finished...it was fantastic!

We have had some trouble with Cade's new meds and getting them regulated...the first dosage was good but when we bumped him up for the second week he was literally falling asleep at lunch and sleeping on and off for the remainder of the afternoon.  After a few days of this we said enough, and decided to contact his doctor here to get a prescription for the lower dosage.  Long story short - this left him without any meds on Monday.  Now you would think that missing just one little pill wouldn't cause that much harm.  But, as we know, Cade isn't just any little 4-year-old and his body is definitely unique.  Basically as the day progressed Monday he went into what I can only describe as "manic" -- at 2 am he was literally jumping on the bed and rolling around.  We were up most of the night.  Tuesday wasn't much better, even after he had his meds...he had zero impulse control all day.  Wednesday he did begin to improve, but when Heather came for therapy he would not make eye contact, and after about 15 minutes he went into an all-out meltdown that ended with his body simply being unable to handle things - his body went into shut down mode and he fell sound asleep.  We have spoken to the doc at the STAR Center about the problem, and he told me today that he has never seen, heard, or even read about this happening...of course, right?!  We are keeping him on the lower dose but watching him very closely!

We have also been blessed beyond measure this week.  We are a living testimony to the "Fishes and Loaves" story from the Bible.  We have been praying for the remainder of the money we needed for our return trip to come in before we left.  God came through with another miracle -- he allowed the money from the VA that Eric has been waiting almost 4 years for to come in yesterday.  The back pay is significant, and after waiting so long we had almost given up hope of ever getting it - especially with the economy and the government spending issues.  The amount was more than we even thought it would be, and in what is apparently an unheard of event, the VA actually deposited the money into our bank account instantly!  I am still pretty much speechless and processing all that has happened...we went from no life savings to being able to make a significant dent in replenishing what the Denver trip has cost us. 

As we gear up for our return trip to Denver on Wednesday I want to take the time to thank each of you again who has been a part of the unbelievable miracles that we have experienced this summer.  When I sit back and try to take it all in I am overwhelmed by all of our blessings.  Each of you who donated to our cause, prayed with us, have been keeping up with us through this blog -- you are all truly a blessing to us.  And although you will probably never know just how much you mean to our family, we do pray that God pours rich blessings over you all as he has done with us.  It is overwhelming just how much love each of you has for our little boy.  I cannot wait to continue to share with you all about God's touch on Cade's life.

We will be leaving Charleston next Tuesday and heading to North Carolina to spend the night with my parents before we fly out of Greenville, SC on Wednesday evening.  Please pray for our trip -- Cade has not done well with the altitude changes and the meltdowns in the airport during our layovers are very concerning for us.  Eric has contacted a disabilities liaison with the airlines (I had no idea they even had those!), and we have made arrangements to pre-board as early as possible to hopefully offset the time he has to be waiting before we fly again.  We have a very short layover in Cleveland, Ohio going this time and will arrive around 8:00 pm Denver time on Wednesday.  We are praying for another stay in the Ron McD House this time -- we will not be able to call and check on that until Wednesday morning.

Also, Kai will be staying behind this time with my parents.  Eric and I need to be able to focus more on Cade's therapy on this trip, and without Kai we will both be able to attend each session.  Since this is a much shorter trip, basically a week and a half, we feel better about leaving him.  He will have a blast at Nana and Pappy's -- might better pray for them! 

"All I need to do is fall..."

Today I am feeling overwhelmed and underpaid.  I know I should feel like just being with my boys is payment enough, and most days it simply is.  But today has been one of those -- a day where I would have given anything to just roll over and pull the covers over my head so the day would just roll right on past.  I guess this day actually started around midnight last night...that was when Cade began knocking on the wall of his bedroom screaming, "Daddy, let me out!!"  It was just downhill from there...long story short I ended up with both boys in my bed by 4 am and Eric sleeping in Cade's bed.

I'm not sure if it was simply the lack of sleep, the overall exhaustion of the situation, or a combination of the two...but today was just one of those.  And try as I might I just couldn't shake it off today...Cade climbing into his dresser drawer to climb to the top of his closet -- yep, that ended with a destroyed dresser drawer.  Being on the phone and email with the school system -- yep, that ended with no new information.  Two, count um...TWO spilled boxes of NERDS candies all over the living room floor -- yep, that actually hasn't ended yet because I haven't had the chance or energy to clean them up!  A monster meltdown over a computer game -- yep, that ended just as it began, as a monster meltdown because Cade lacks the reasoning to determine that he must keep the computer mouse on the game to make the character move.  Shoot - just writing all about this makes me tired!

Today I have been burdened, almost suffocated, with discouragement.  It seems as though Satan only needs a teeny, tiny little window and he can just slide right in and beat me down.  Today I have been inundated with thoughts about what we can't do...I can't take the kids to the water park or to the beach with friends because I have no idea how Cade might react and I cannot handle him alone.  I can't visit the public library for a story time because I am quite sure we would never make it through without being way too disruptive.  I can't even manage to get us unpacked from our trip fully because I am spending my time fending off meltdowns, arguments, and working on intentional play with Cade.  And although it is just two weeks before a brand new school year will start, I can't buy my little boy school supplies from his list because we still have no idea where he will be placed.

Yes, today I have wallowed a bit in the discouragement of our situation...thrown quite a pity party at the fact that, yet again, we are dealing with these trials that I would much rather just forget about.  Yet throughout our journey so many have encouraged me with God's written word.  I continue to be amazed at how God can just drop a verse right smack dab in my lap.  Today that verse is Deuteronomy 31:8  "The Lord himself goes before you and will be with you; He will never leave you nor forsake you.  Do not be afraid, do not be discouraged."  The Message version says this: "God is striding ahead of you. He's right there with you. He won't let you down; he won't leave you. Don't be intimidated. Don't worry."

So even though today I feel as if I am definitely wearing way too many hats...there's absolutely no way I can be everything and everyone that it seems I must be right now...today God has already gone down this road for me.  Even though the discouragement is eating me up and often making it hard to even breathe...God has already gone through this day - and He is waiting on the other side with His arms open to just catch me...all I need to do is just fall...

I thank God for the small stuff!

Today was our first "real" day back at home...a day where Eric went to work and we were left with our usual summer schedule.  I was a bit anxious about it...Cade's sensory issues have worsened so much since last summer that I wasn't sure just how today would go.  Plus we're all still tired from all of the traveling and trying to deal with the time change - you wouldn't think 2 hours would be such a big deal!

I was excited, though, for Cade to get started working with Heather, our OT. This would be the first day since STAR that she has worked with him, and I was anxious to see just how we plan to carry out the STAR Center's plan here at home.  Things were great - he was super quiet at first and was especially cautious.  He waited to see just what she expected of him before he let his guard down a bit.  In unknown situations he tends to now be guarded and immediately seeks to take control of the situation.

Cade was very interested today in a bin of rice and beans that Heather brought.  He scooped them into bowls, dug out puzzle pieces -- it was very inviting for him.  He would not put his hands in many materials before, so I am happy to see that he is branching out a bit.  He even invited Heather to ride on his yellow power wheels truck -- and because that truck means so much to him I took that as a sure sign that he has made a friend!  I am excited to see what great things come from this relationship!

Tonight I had both boys myself, and I dreaded it.  It's never easy to get the bedtime routine down with 2 people, much less alone.  In fact as I'm writing this neither boy is asleep.  But at least they are in their rooms, and I consider that a success for now.  At bath time tonight, though, I decided to employ a strategy Julianna used at the STAR Center.  I found some bath foam that we had gotten for Cade a couple of years ago -- he wouldn't touch it then, so I had just packed it away.  Tonight I pulled it out and squirted it all over the bathtub walls.  Then Cade and Kai used watering cans to wash it off (ok, so Kai mostly just smeared it everywhere with his hands - I even dug some out of his ear when I dried him off!).  This was very similar to the activity Cade did with Julianna where she squirted foam onto the windows or surfaces in the Messy Room and he used a water bottle to wash it off. 

Cade loved this activity and both boys had a blast at bath time.  Cade used a ton of verbal language, and invited Kai to play with him.  Of course I have no video of this...I was just trying to stay dry.  But it was a success!  After bath Cade continued to include Kai in his play.  After a while I heard Cade say, "Here Kai, hold my hand," and in the kitchen they came wanting cheese for their snack.  I was so encouraged -- it is rare when Cade involves Kai appropriately in social situations.

So overall I would deem today a success!  I thank God for the little things, like my boys holding hands.  And I thank Him for bath foam.  And I know I should also be thanking Him for the fact that they are, I'm pretty sure, both in Cade's room right now getting along...but I would much rather they both be in the bed!

Denver Diary Day 24: Getting home from the Rockies was...rocky...

We are officially at home in SC...for now.  We headed out Saturday morning at 5 from the Ron McD House to the Denver Airport.  We thought both boys would stay asleep, but they were raring to go once we got them up.  We will definitely miss the cool mornings in Denver while we are home...it was so nice to wake up to 60 degrees!

The Denver Airport was beautiful...it looked like little adobes sitting on the top.

By the time we got to the airport, unloaded our rental car (which was a huge feat in itself), got all of our luggage and both boys (blankets, stuffed toys and all) into the shuttle bus, got to the ticket counter (of course because we had a changed ticket we couldn't check in at the curb), and got through security (where we had to make Cade put his blanket on the conveyor belt for the security check--it's getting a bit ridiculous what goes on there, but that's another story...) we were wiped out and ready to get on the plane and sit for a while.  I got stuck sitting between both boys - Cade slept the entire way and Kai made himself comfortable with his legs stuck out in the middle of the aisle and whined about being in the seat belt. 

Cade in the shuttle from the rental car agency to the airport...he does look chipper for 5:30 am, doesn't he?!

Our layover in Atlanta was another story.  We are pretty sure that the altitude changes in the place greatly affect Cade - on our trip going to Denver he melted down in the Atlanta airport for our layover.  We were able to get him calmed down and all was well before we boarded, though.  This time Cade's meltdown happened shortly before boarding the plane.  We rushed up to board with the early boarders - a very nice man who saw my desperate face allowed us to get in front of him - I quickly passed our boarding passes up, only to watch in what seemed like slow motion as the ticket agent could not get them to scan.  As another ticket agent came up to help Cade's meltdown begin to reach monumental proportions...he was hanging upside down on Eric and screaming and crying.  Then the supervisor comes up to let us know that we really need to "calm him down" before we get on the plane.  Well...that's about all it took for me to begin my own meltdown -- as I ran after Cade, who had gotten away from Eric and was running, the entire crowd of other Charleston-bound passengers watched in "train wreck fashion" while our little family tried to get on the airplane.

At that moment God sent what must have been an angel to help us.  A ticket agent came up, gave me a hug to say it would be fine, and then picked Cade up and walked us down the hallway to board the plane.  He then led us to our seats, where he gently put Cade in, then made sure we were all settled before he left.  He even came back before the plane left to make sure we were all ok.  As the other passengers boarded and cautiously stared at us to see our outcome, I prayed silently for that man.  If it hadn't been for him we might still be in Atlanta (well, not really, but it sure seemed like it!).

All of us were happy to be pulling into Charleston (until we stepped outside and got assaulted by the heat!).  We were all in bed by early evening and slept in very late.  Cade is still adjusting...he got up at 10:30, took a nap at 1:30, then fell asleep again by 7:00.  But it is definitely so nice to be home, if only for a couple of weeks.

The boys checking out the Charleston view...we're glad to be home!

Tomorrow we begin therapy at home with our new OT Heather.  She isn't really new - I have actually been talking to her throughout our time at the STAR Center.  But she will be working with us here at home on a regular basis now.  Please pray for a smooth transition for Cade tomorrow.  We will be working on the model that the STAR Center set up for us, and especially beginning to address Cade's extreme oral-motor sensory needs.  Also, please continue to pray about the school situation.  I will be calling the coordinator for the Developmental Preschool in the county we are in tomorrow...hopefully we will be able to get Cade screened soon and have some definite answers on his placement.

Denver Diary Day 23: Nerf Guns and Mud Pies....and Homeward Bound (for now)!!

Today was our last therapy session before we head home for our two-week hiatus.  It's hard to believe we've been here over 3 weeks!  Today was a great day at therapy...Cade found a new toy that sparked his interest and his ideation was excellent today.  As he was running through the gym he stumbled across a box full of interesting and colorful things.  Friends, my son has just been introduced to the Nerf Gun!!

Here Julianna is explaining to Cade how the gun works -- she was very specific with the rules...never point it at people, only objects (thanks for that one, Julianna!).

Ok, so Cade was super excited about this thing!  We played for probably a half hour...Julianna was able to help him try all kinds of ways to play with the gun.  She was even able to get him on the swing -- a huge feat  because swinging is so good for regulating Cade, but he hasn't chosen to get on it as much as I would like.  You can see he is organizing here, so the language drops off a bit:



Cade thought it was great when the "bullets" landed and stuck to the mirror or glass.  Once he got started he played and played -- eventually they made it into a target game.  You will see that each time Cade hits the mirror Julianna draws a circle around the target.  This helped her to engage him -- we have found that ENGAGEMENT is really what Cade seeks from us.  External rewards just don't work for him.  The most success here has come from us being able to get in his world and engage him, to truly get him.

I could go on and on about this Nerf Gun game...it was so wonderful!!  But I'll spare you that and move on.  Cade also found a bin of sand, beans, and water today in the "Messy Room."  It has been interesting to see that, as his regulation has increased a bit, he is choosing to play with "messy" things when he wouldn't before.  Julianna is again engaging him here as they play with the "mud":



Today at the parent meeting I got our "marching orders" for our 2 weeks home.  We are going to spend 20 minutes two times a day playing with Cade...not just any playing but in the form that we have done at the STAR Center.  That's when the true neurological changes are taking place.  Julianna has explained to us that it will take many times of experiencing a feeling (whether it be happiness, frustration, love, etc.) before Cade's brain will actually process that feeling naturally.  For example, he will need to experience how to wait (the stop and go game, etc.) many times through play before his brain will "learn" what that means and begin to develop a concept of time.  We are going to just engage Cade...give him language when we can but not inundate him with questions where he is expected to give an answer.  Intentional Play -- we are retraining his brain to be able to handle typical neurological responses. 

When we return we will be working with both Julianna and a psychologist at the STAR Center who is also DIR/Floortime trained...this is a therapy that we have researched and believe will be the best for Cade's progress.  It is a therapy based on developing relationships - working on teaching him how to interact and play with others while also working on continuing his sensory development.

I must say that on our last night here for this trip I am surprisingly a little sad.  It is amazing how quickly this place, though hard, has become our home.  We have made such dear friends here that we hate to leave, but many will still be here when we return in 2 weeks.  We all will forever be bonded by the experience that each one of us is having here at this time in our lives, and I have made some dear, lasting friends here.



Ok, I have to share some pictures of things I will miss from good old Aurora, CO:

 

Yes, folks...those are pink high heels...Kai absolutely loved these shoes and even wore them to the kitchen for meals.

The boys loved the playroom...we spent many hours here each day!



Cade loved the bikes...he and Kai rode many a mile over the last 3 1/2 weeks!

This was just so funny I couldn't resist...we laughed every time we passed it.  What a fitting name for a funeral home!

This window in our room was Kai's favorite spot.  From here he could see the playground, the parking lot, the sky (lots of airplanes!), and the highway.  We could always find him perched here!



Ok, so I know this isn't a great picture.  But you know no idea how hard I worked to get it!  This is one of the adorable prairie dogs in the field in front of the Ron McD House.  He sat perfectly still...until I moved about 2 inches and then he squeaked at me and took off down his hole!

Our journey is far from over.  I will continue to chronicle our daily progress as we enter our "home time."  We have so much work to do over the next two weeks - beginning a new structure at home, beginning therapy with our new OT Heather, and working to continue the progress we have made here.  I am anxious about home and what that will bring...especially without the safety net of the STAR Center.  We will be returning to Denver, and hopefully staying in the Ron McD House again, on August 17th for another two-week stay.

Please pray that Cade's new medication will be effective  - he started it today to help with the impulsivity.  Also, please pray that we can make a decision about a school placement for him next year.  He has been attending a church preschool for the past 3 years, but we are unsure that this is the right placement for him now.  This is especially hard for me - I just want to make sure we put him in the best possible location for his success and happiness.  Since school, whether private or public, will begin while we are here the second time we must make a decision while we are home over the next two weeks.  Please pray for clarity, answers, and that we move quickly on those answers.  

Being here has been such an experience for our family...we have gained so much knowledge about Cade and what we can do as a family to help him.  I know we will, we already have, experienced so many trials as we work so hard to make true neurological changes in Cade.  I am reminded of Psalm 30:5:  "...weeping may last through the night, but joy comes in the morning."  I know we will experience that joy.  And I cannot wait for the sunrise...



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Denver Diary Day 22: Pirates, Pizza, and Harleys

Today was Cade's next to last therapy session for this trip.  If I thought all would go beautifully, I was wrong!  It was a tough day...after a fairly typical start on the monkey bars he was very upset because he wanted to flip upside down without any support from us.  It's not that he can't do it...he can pretty much climb and flip on just about anything with ease - one plus to his SPD.  But because he had fallen in an earlier session Julianna let him know that it was unsafe to flip without help, so we would help hold him whenever he flipped on the monkey bars..  Cade takes many risks...his "danger factor" isn't what it should be for a typical 4-year-old (but of course more typical of that of a 4-year-old boy!),  So we have been working on setting boundaries for him, especially in situations where he could injure himself.

Well...Cade certainly did not like the prospect of not being able to flip without someone's hands on him.  His extreme tactile defensiveness screamed at us to back up, don't touch, move away...and that turned into an all out meltdown - complete with hitting, screaming, crying, and Cade retreating to a room where he wanted to be by himself.  In a desperate moment I looked at Julianna and said, "What do we do here?!"  She said we just have to co-regulate him -- he cannot regulate these emotions himself and the lack of sensory regulation is actually what caused this meltdown in the first place -- so we worked to give him the language about what and how he was feeling, and tried to give him options for allowing himself to take a break calmly.  After a timer, offering a tent, moving away from him - probably at least 20-25 minutes of meltdown madness - Cade began to de-escalate and redirect himself to a pirate game he found in the room.

Happily I report that the session ended up being an excellent one.  He and Julianna played a guessing game with pirate swords that helped to redirect Cade and calm him:

Julianna is hiding swords and Cade is guessing which color is in each hand.

And now Cade is taking a turn hiding.

The remainder of the session consisted of hiding in the Rainbow Room, the room full of huge pieces of Lycra where Cade can climb and climb forever -- we played Hide and Seek for several turns there...and then Julianna and I being chased out of the gym by Cade the Shark.  He came out pretty regulated and was able to have a good car ride home - this has not  always been the case here as I have endured many car rides after therapy spent screaming and crying.

On a note completely unrelated to therapy...when we came into the STAR Center today I was speaking with the receptionist to get some appointments nailed down for our return trip.  Julianna came out and we were talking to make sure we had everything ready to go for our next two weeks, when we heard some hysterical laughter coming from the book corner. Now this is usually pretty alarming to me...don't get me wrong, I love to hear my little boy laugh.  But it usually means something is going on that probably shouldn't, so you can imagine how I flipped around to see what was happening.  Cade and some other kids had found the book, "Once Upon a Potty" -- I'll let the rest speak for itself...

This evening the local chapter of Harley riders came to the Ron McD House and brought us pizza for supper.  It was a lot of fun - the house gathered outside on the patio for a picnic.  The boys had a great time...I mean, pizza and Harleys??!!  Of course they pigged out, especially Kai, and then asked if they could look at the motorcycles. 



Kai chowed down on pizza...and begged several desserts when all was said and done!

Cade pretty much filled up on pizza and carrots...a winning combination!



Kai with one of his many desserts...



Eating is exhausting!



Checking out the Harleys...

We were fine after we kept the kids from pushing the buttons...I hate to think what this poor man endured when he actually started up his bike!




Kai went down the row...he was enamored!