WEEK 9-10 Post-Steroid

8/12: Amazing day!  Super happy all day!  And I tested him- I didn't let him get the tablet when he wanted it, he used his words several times instead of getting angry.  His IOP therapists noticed the exact thing I have seen lately: he is talking non-stop- but scripting/talking to himself.  It seemed like he had a difficult time controlling his speech at the IOP today.  But they said he was super affectionate and very happy.

 

We stopped to pick up the script for Hunter's Vitiligo and Paige and Peyton were off the charts loud.  Hunter was being so good, and I complimented him.  As we were pulling away, he said, "Mommy, they were not listening.  I was being a super good boy."  Tonight as I was putting him to bed, he said, "Mommy, I am so excited about my donut in the morning! I am going to go to bed SO nice and be a good boy for you."  Love him!  Paige got home about thirty minutes after I put Hunter to bed, and when Peter walked up the stairs to put Paige to bed, he saw the light on in Hunter's room.  He opened the door, and there was Hunter on the beanbag reading a book...but as soon as he saw Pete, he stretched out his legs and pretended to be asleep- total seriousness.  We are still cracking up!  Such normalcy!!! 

8/13: While Paige was at camp, I took both boys to the grocery store.  And they were fabulous!  I actually bought them each a car b/c I was so impressed.  I think it is important to reward at random times so Hunter doesn't always expect a reward for good behavior, but it also keeps him thinking that he could be caught being good (just like the "secret timer" they use during their in-home sessions).  Peter called me at 4 and told me had last minute baseball tickets for the game at 7...so we decided to chance it.  We knew it would be a late night, but we thought we would try and just go for a couple innings.  The game started off SO smooth...walking into the big stadium, getting ice cream in little helmets with sprinkles, finding our seats...

 Then all of a sudden, all hell broke loose.  Hunter saw me taking pictures of them with my phone(and his ice cream was gone), and he ran over and asked for my phone.  After telling him no, he instantly recognized the sounds of the game ("it's too loud in here!!!"), and he wanted my phone right then and there.  As I have blogged about before, we could have easily handed him my phone and he would have contently watched McQueen videos for several innings, all the while ignoring the stadium noise that he had just realized was happening.  However, we did not...b/c we were at a baseball game and we were going to watch baseball.

This kid screamed bloody murder at the top of his lungs.  Four times.  With 500 people turning to look at us, Peter carried him up the stairs into the breezeway.  Peyton spilled his ice cream everywhere, and Paige and I called it a day and went to meet Hunter and daddy.  After that, everything was wrong.  The announcements were too loud, his shoes were hurting, he was tired...on and on.  Game over.

As we were walking out, Paige and I stopped to get her a little souvenir and the boys ran on ahead.  They had racing games for several minutes while we were waiting.  They were a hot, sticky mess when we got there- and I loved to see them all like that! 

 All and all, we made an attempt, and we realized that his sensory integration disorder is still very, very severe. :(


8/14: Little harder day at program- was agitated b/c one of the therapists didn't bounce on the ball like she did.  I an imagine he was a little tired from being gone at the game the night before.
However, great day at Montessori preschool- even pretend played with the other children!

8/15: ABA therapy and playdate with JP.  Played Go Fish and he really enjoyed the game- followed the rules and didn't get upset when JP won.  Such a change from a few months ago.

Paige had a performance from her camp that night, but we took Hunter last year and it was a complete disaster.  I ended up going alone with Paige and videotaping it for daddy.

 sweet friends

 

 

8/16-8/18: Fun, busy weekend.  Paige had her last T-ball game. She had a huge hit and ended the season with two game balls! Hunter actually interacted with a  few people at the game.  Hunter also had his Special Olympics Swim meet and award ceremony.  Hunter warmed up in the lane by himself, and was very excited to swim in his assigned lane (lane 6).  However, when it was time for his heat, the official starter stood right next to his lane and blew the whistle.  Game changer.  He broke down in tears and just stood there.  We watched everyone else finish, and then I somehow convinced him it was time for the five-year olds to swim (everyone else is 8 and above).  He got in and did it!  All the way to the end...and the eruption of applause and cheering was enough to melt your heart.  So proud of him!  They had a picnic for all of the athletes and the kids enjoyed the hotdogs.

When it was time for pictures, Hunter stood by the group and Coach Sandy..but slowly backed away...and eventually ran off.

 Time for trophies!  Hunter waited SO patiently!  They went in alphabetical order, so this was a big deal!

 Yea!!  And check out little brother walking up behind, waiting for his trophy. I actually had to go up and get him and bring a crying, non-trophy holding little boy back to the crowd. :)

 And then here is the rest of the weekend...some pool time, interspersed with document review, labs, etc.  Fun times!

And while Mommy worked on prep for the appointment, it was lego central in our house.  Our latest mission is to organize and rebuild all of Paige's 15 lego sets that were combined together.  It has been a task!  peter and I were actually up late a couple nights this week building sets- maybe the mindless work is good for us this week.



 

Peyton had a little cold on Saturday, so I decided to keep him home and get dinner started while Peter took this kids to the park.  I could not believe the picture he texted me about Hunter "killing it."  I NEVER thought he would attempt this structure! And he got down by himself! And later this

 weekend he did the big slides at the outdoor pool!  Definitely willing to try more this summer.







 8/19: Longer tantrum at IOP.  Upset with not getting a piece in Zingo.  Little more easily agitated at home.  Peter took the kids to a restaurant for Paige's tball end of the year party and they all did great. Hunter even clapped for all the girls getting trophies..and there were a lot of people in the small room; noise didn't seem to be an issue.
8/20: More aggression.  Hit the TV.  Now will slam his hand on something and grunt when he gets angry or doesn't get his way.  Had an appointment with Dr. B, our biomedical doctor.  I will combine that info later with our pediatrician appointment this Thursday.  Also my latest concern with a very high mycoplasma IgG found in his most recent labs.  I'll keep you posted.  Gotta get to bed. :)

 

 

Just one thought to leave this trial period with....can you see the strep on 2/18 (stabilizing with antibiotic), then jump all over the board with rages, behaviors, basically unable to stabilize (and these are just the total number of episodes- episodes could range from an hour of tantrumming to 30-50 behaviors each number), and then drop significantly and remain low after the steroids on 6/10 (besides the spike on 6/12, but that was a reaction to the steroids, which we expected to happen)?  Our therapist just found out the day this Wednesday and the data clearly shows the medical intervention.  They have remained consistent controls since April and were not allowed to change any programming, at the request of Dr. G.  As our lead therapist described it, there was "a whole lotta bad going on" followed by "a WHOLE lotta good."

 

Amazing.  LOVE data.