September 11

And yet another insane month.  Besides dealing with Little Buddy's dramatic and frightening drug withdrawal from the clinical trial ending, we also went through the aftermath and flooding of Hurricane Harvey.  Ok, 2017, I'm ready for you to get out.  Stop trying to fight 2015 for the title of "Worst Year Ever."  On the bright side, by the end of the month, we were starting to see some positive changes in our little guy.

     

The pictures above show the reality of the first half of the month.  Little Buddy was in bad shape.  He wasn't eating, he wasn't walking, and he was sleeping ALL of the time.  All of it.  We had numerous labs done and the results showed dramatic difference from his labs done just in June at his well check (which were all perfect and normal).  Don't tell me that the drug wasn't helping him when taking him off of it sent him into a sudden and dramatic tailspin of decline.  

And even when he could stay awake, he was content to just sit on the couch and watch a show.  Little Buddy, sitting still.  That is NOT normal in our house.  He was scheduled to start school at the end of August; I wasn't sure if I was even going to send him he had me so scared.

Even with everything going on, we tried to do anything we could to make him happy or perk him up.

Little Sister had a camp day, so Daddy and I took Little Buddy to a special pool day just for him.  He wouldn't swim like he used to, but he did smile some and have fun.  To realize that we had to fight to get his smiles again was heartbreaking.  

He became obsessed with lemonade and would verbalize it.  You better believe we got him a lemonade at every opportunity.

Anytime we got a smile, we would immediately document it, because we didn't know when we would get another.  

          

Even Little Sweetie got in the the act, trying her best to include her big brother and make him happy.  So proud of her.

And then, finally, a turning point.  Right before school started, we got a REAL smile from Little Buddy and he independently ate some food.  These were the first real signs that he was doing better, which was good news because I was scared beyond belief to send him to school.  We and our doctors believe that what happened was that Little Buddy went through a dramatic withdrawal of the drug.  It took his body a month to remember how to metabolize everything without the use of the enzyme it had been getting.  

He smiled!  A real smile!  My sweet boy!

With these reassurances that he was coming out of the fog he had been in for a month, we got ready to start 2nd grade.

Reading our traditional night before school book!

Ready for the bus!

     

Happy to be at school!

He survived the first day!

We are so thankful that he has turned back around.  There are still some lingering declines, but nothing compared to what we were dealing with during the first half of the month.  We love this boy so much and to have been so scared that we were losing him so quickly was a nightmare that we were afraid we would never wake from.  This was the scariest month of our lives but it did remind us how much every day with our Little Buddy, heck with anyone, matters.  Because you don't know when life will change.

Height and Weight

Thank God, his appetite and energy have come back!  His weight is back up and is now 68 pounds (we may have been pushing his favorite foods!) and he's 52 and 3/8 inches tall now.

Personality

Again, thank God our little boy is coming back to us!  Once the drug withdrawal finally ran it's course, we got our happy and energetic boy back again.  I'll never ever ever complain about how he's too excitable or too loud because this brief taste of the alternative was one of the worst things I can imagine.

Developmental Changes

He started the month making me think that we were going to need to call hospice.  Praise God that we finished the month almost back to his normal self.  He's still slow on the stairs and not using his fork as well, but so much better than a month ago!  The real noticeable difference right now is at Run Club which just started back up.  He did 2 miles, but only by walking.  He wouldn't run.  It's hard to see that, especially considering how well he did at the triathlon in July, but I am trying to focus on the fact that he did walk 2 miles and willingly.  He seemed to enjoy it.  Hopefully we can build him back up to running again.  

     

Fun time at Run Club getting marks with friends!

Hoping he'll run again someday, but right now just being thankful that he's walking again.

Fun Tidbits

Anything Little Buddy verbalizes right now, he gets.  And he is STUCK on having some pie.  So we made apple and he devoured it in less than a week and demanded more pie.  So I guess we are making pie all of the time right now.  I've never been so happy to see him eat!

"I have some pie!"  Yes, little man, you can have as much pie as you want!

A very grateful, 

LBM

Little Buddy's Momma

So There Was This Hurricane Named Harvey That Stopped By...

Although our life in Texas is pretty normal, sometimes the reality of living close to the Gulf Coast becomes too real.  Such was the case this hurricane season, when Hurricane Harvey roared in and devastated SE Texas, especially the Houston area.

Daddy and I had weathered a hurricane before in 2008, but it had just been a rough storm that blew in and took out the power for 2 weeks.  Harvey was different because we didn't get the storm.  Instead, we got the rain.  And lots of it.  It was the most devastating flooding Daddy and I had seen since Marietta flooded from Ike in 2004.

It started innocently enough, like the spring rains and floods from 2 years ago.  But then the rains didn't stop.  For days, it didn't stop.

Little Buddy watching his first hurricane coverage.

     

A break in the rain means taking a bike ride for two stir crazy kids, even if it's in pajamas!

     

Little Sweetie got out her camping kit just in case we needed to rough it!

The water came up, but very slowly the first day.  We did not know what was to come.

Just the corner the first day, but slowly moving up towards the pirate ship.

The rain is working to fill this bucket!

Spillway is full, but not scary.  Yet.

Rising water also means that woodland creatures like skunks start to vacate their subterranean homes and that stupid dogs like ours decide to tangle with them.  De-skunk bath in the rain for Chesney it is.

Survived the first rainy day pretending to camp.  But what will tomorrow bring?

Watching the water rise the day before hadn't been too frightening, but the next day it rose faster.  Watching the pirate ship and the spillway rise significantly hour by hour made us assess what our options would be, as the rain showed no signs of stopping.

Encroaching on the boat.

Coming around the front.

Moving around the slide.

Surrounding the boat and moving towards the building.

Just keeps rising.

Has reached the building.

Halfway up the slide and in the building.

After seeing that our culverts in the cul de sac had filled, we knew it was time to skedaddle.  We couldn't risk getting stuck in the house with no way out.  Again, since Daddy and I had lived through a flood once already, we started mobilizing.  Two tubs were packed with 4 days worth of clothes and supplies and everything we could carry went to the second floor.

Seeing this culvert full and knowing that the water had nowhere left to go made our decision for us.  It was time to get out.  We couldn't chance getting stuck in the house with a special needs child and a 3 year old.  

     

Empty downstairs, full upstairs!

       

   

The first night of our new nomad life was spent at the E family's house, who kindly took us in.  The kids had a great time!

We found out the next morning that our cut-de-sac was completely flooded in and that our house was in danger of taking on water.  When we found out that we were definitely going to be out of the house for several days, Uncle M and Aunt S called.  They were stuck on the East Coast on vacation and couldn't get back in town because the airport was closed.  They very kindly offered for us to stay at their house for the rest of the week which we gladly accepted.  

Enjoying the playroom at Uncle M and Aunt S's.

Settling in for a good night's sleep.

Little Sweetie is excited to sleep in L's bed!

Chesney safe from the storm in the garage.

Bonus:  Little Buddy's therapists both live near Uncle M and Aunt S's house, so he still got to have therapy!

Although we were safe, so many were in jeopardy.  The flooding was unprecedented.  Areas that had never seen water were flooding.  Seeing the widespread devastation on the news was heartbreaking.

     

And then finally, nearly 5 days after it started, the rain stopped and we saw the sun.  We celebrated by taking a walk.

During this time, we had been getting picture updates from some of our neighbors who had braved to stay.  Needless to say, the pictures were making us very concerned and anxious to get home.  Our house was very close to taking on water; would it make it?

     

It's up to the front step and the slide is completely covered.

Although we knew our cul-de-sac was still flooded in, we also had heard from our neighbors that you could make it to the house in waders now that the rain had stopped.  Daddy got a pair and went to check on the property.

Daddy's ready to go!

Heading left at this interaction takes you down to our street.  This entire street was flooded.

The entire street, completely and deeply covered in water.  It was surreal.  We run and drive and bike these streets every day.  It has never flooded to this extent.

The spillway has overtaken the bridge.

When Daddy got our our house, we were relived to confirm that it had not flooded!  The water had started to come down some since the earlier pictures we had received from our neighbor, but it still was not passable yet.

Views from the back and the front yard.

Thankfully, the water receded enough that day that the roads were clear enough for us to go home the next.  We were so happy to be able to get back home and so fortunate that our home did not take on any water.  So many, however, were not so lucky.  We wanted to help.  It's very hard to do much help when you have a special needs child and a 3 year old, but we wanted to do anything we could.  We got ready to take supplies to Little Buddy's horse therapy ranch, which took on water and property damage (they had evacuated the horses prior to the storm) and to take donations to collections centers.

Ready to go help!

With Ms. J at the Ranch!

Lots of work going on at the ranch!

Post-recovery effort Chuy's lunch!

Proud of how resilient this little girl was through everything:  the storm, the moving upheaval, the crazy days.  She was awesome.

Finally, the water receded and we went out to check the aftermath.  To see the water lines on the pirate ship, fence, and building were surreal.  It was hard to believe that much water had been in our yard that long.  It was also hard to believe we didn't experience more damage than what we did.  We'll just have to reset some fence posts that started leaning in the soft dirt and do some repairs to the shed.  So minor compared to what so many are facing.

A baby snake stowaway found in the ship's mailbox.

The water actually went over top the 12 ft tall fence in the back furthest part of the yard.

How high the water and debris came up our driveway.

The creek crested at 96.9 ft.  It was projected to go to 112 ft at one point, which would have completely destroyed our home.

I cannot stress again how fortunate we were.  Our house has maybe a foot or two higher elevation than some others very near to us.  That's all it took.  Those homes took on water.  However, they only had a few inches.  Neighborhoods only a mile away from us took on near to 8 feet of water, completely destroying the homes.  It is going to take a long time for recovery because this flooding stretched so far and wide around the Houston area.

A brick wall around a neighborhood completely destroyed.

Neighbors so close to us ripping out their flooring and dry wall.

It was a very stressful time here for us and for so many more.  While we will be able to get back to normal sooner than others, we will work to keep helping those in need.  As insane as this situation was, to see the amount of help and care in our community was beautiful.  Hopping we can sustain that in the months ahead.  Overall, I was very proud of how we came together as a family and made it through.  Now, let's hope for some boring times ahead!

A grateful, 

LBM

Little Buddy's Momma