Monday, June 29, 2009

boy, bites, & benedryl

"Learning to live in the present moment is part of the path of joy." -- Sarah Ban Breathnach
Saturday night Boy was bit by something while we were at the fireworks, but we didn't realize it until yesterday morning when he woke up and his ankle and foot were swollen and red. By 10pm last night the swelling was pretty bad on his foot, ankle and calf and covered red. Of course urgent care was closed at that time and I didn't think it was bad enough to warrant a trip to the ER so we held out until this morning to see our Pediatrician.

I'm glad we didn't freak and do an emergency visit somewhere because there isn't much they could do. Apparently he had an allergic reaction to whatever bit him and it wasn't infected so that was good. The treatment for this is a liquid medicine STRONGER than Benedryl, which to some people may sound like a blessing -- my pediatrician stated that they sometimes use this as a sedative for kids...hmm...not my kid!

Benedryl and Boy do not go together. He has the total opposite reaction to Benedryl, where most kids get tired from it or even can't keep their eyes open....Boy stays up ALL NIGHT LONG. Seriously, all night...

...long...

This happened to us last year or the year before when he happened to need to take some due to a cold that he had. He stayed up around the clock, couldn't sleep. 2am, 3am, 5am rolled around and he was still up. 7am still up...finally at 11am he fell asleep and I nearly did a dance of joy....until 2 hours later he was up again and ready to go for the day.

So, Benedryl is bad, very very bad in our house and now my Pediatrician has prescribed something even STRONGER than Benedryl to help with this weirdo bug allergic reaction thing. However, I must say that so far he is not all hyped up, but it is 10:45 and we are still battling him to fall asleep...

I will let everyone know in the morning...wish me luck please!!

Sunday, June 28, 2009

our week coming up

"People grow through experience if they meet life honestly and courageously. This is how character is built." - Eleanor Roosevelt

Boy got some weird kind of bite at the fireworks party last night and his entire foot/ankle are swollen and red. It doesn't look serious enough for an ER visit (although everytime I look at it I nearly pack him up to go!), but he needs to go in first thing in the morning.

Wednesday is our first official sensory therapy since our evaluation. I need to ask if I get an official report on what his sensory issues are.

I need to contact the Pedi-Gastro doctor to find out if we see him before the appointment we set up for the 6th.

Need to get ready for vacation -- King's Island on the 7th!

got milk?

Yesterday we had several parties to go to and I was unsure how to handle telling the hosts that boy was milk free and couldn't eat the various treats being served. I didn't want to be rude when we aren't even 100% sure it's helping.

So, I let him eat pizza and cookies and cake and more cookies...let him enjoy himself.

Well, we are paying the price today!! He has been bouncing off the walls today and his indecision levels are off the charts.

So, lesson learned? We are back to milk free and will continue to monitor to see if it's making a difference or not.

It's all about trial & error and it really annoys me!

(blogging from my phone)

Saturday, June 27, 2009

bowling master

Today we had a bowling birthday party and boy did an awesome job bowling! I am not exactly sure how he did so well considering how he would crinch up his entire body and wouldn't extend his arm to actually throw the ball...but that gave him the magic touch apparently!

He didn't have to bowl "normally" to be good at it...just further proof that "normal" isn't always best!!!

Friday, June 26, 2009

long day...

I think today is going to be a very long day...

Thursday, June 25, 2009

amazing discoveries

I learned so much in our one hour sensory evaluation yesterday, that I cannot even begin to put it all into words, but I will try.

First - I am now officially a huge sensory therapy addict! From just my ONE hour evaluation, it had such a huge impact on our life. Nearly everything that we have been troubled over is sensory related and can be helped.

For more sensory related info, join this site: www.sensoryplanet.org - become a member, join some groups, gather info, inform your brain, change your life!

Ok, so first our OT/PT (Sue) asked what areas am I the most concerned about. Wow, most concerned? Of course I have this huge gigantic list of sensory issues that I have discovered just from reading about it, but what am I the most concerned about? I had to keep telling myself "small steps, small steps". So, my most concerning issues would be his noise sensitivity (because it makes it so he can't eat lunch at school) and his handwriting/coloring (because well, just because I don't want him to keep struggling). I think she noticed me fretting over only having to select a few to start so she let me rattle off my entire list and took notes. Here are our key issues:
  • noise sensitivity
  • handwriting/coloring
  • rocking, hair twirling, hand flapping
  • chewing
  • uses his hands to eat
  • feel of things on his skin
She then had me complete a sensory profile to get a better gauge on where he was across the board, including things I had never heard of or read about -- super enlightening! While I was doing the "test", she was working with boy on handwriting, definitely an issue there.

Sue played a game with boy where he had to use his right hand (writing hand) to pick up dry elbow macaroni, only using his right hand. He had to palm the macaroni and then, still using just his right hand, he had to put each macaroni into a cup one at a time. This was extremely difficult for him and he kept wanting to use his left hand to help. He had no problems picking up the macaroni (using index finger and thumb coordination), but had a huge amount of difficulty using his index finger/thumb to manipulate the noodle from the palm of his hand, to his finger tips and into the cup. This is a game we will now play at home to help strengthen that motor skill.

*Using his hands to eat could be that he likes the feel or it could be lack of control over the utensils.

So, he lacks in the motor skill department, which I anticipated. However, what I did not realize is how the motor skills affect other areas. (I hope I can explain this as well as Sue did!). She took him to a huge play room with various swings hanging from the ceiling, bean bags, jumping ball areas, ladders, slides -- it was the coolest room. She told him that he could play with anything he wanted and she watched him react.
  1. He did awesome transitioning to the new room, kudos!
  2. After she told him he could play anything he wanted, he was super timid.
  3. He asked "what does this do" pointing to a swing and she would only respond with "I don't know" and he would just stand there.
  4. Finally, he decided he would try out the swing and stated that it looked like a swing (it was like a huge padded rectangular shape) and he sat on the swing.
  5. After sitting on it and gently swinging he stood up and walked away from it.
This type of play continued. What Sue noticed from this was that he lacked the basic parts of motor skill development. Basically there are 3 things that happens with motor skills (which I hope I am calling it he correct thing) -
  1. You get a new toy and you come up with a bunch of ideas on how you can play with it (new blocks - oh I can stack them, I can put them into the bucket, etc etc)
  2. You execute and try out your ideas (ok I'm stacking the blocks, oh they don't stack well, that's not any fun...)
  3. You move on to the next idea that you had with the toy (ok so stacking wasn't fun, lets put them in the bucket)
Processes 1 - 3 loop over and over. With boy, he sat on the swing and didn't think to do anything else with it. While I sat watching I thought to myself "stand on it, shake it side to side" and it doesn't appear he had any of those thoughts. Learning steps 1 - 3 are huge for motor development and later for handwriting development - being able to think out what you are planning to write, writing it, going back to the other ideas, putting it on paper, etc.

While we played in the sensory room, she rattled off tidbits of information about my other concerns.

His rocking and hair twirling can be many things; balance issues (vestibular), anxiety related or due to under stimulation.

For balance issues (which he doesn't like to be off the ground except while swinging) the auditory and vestibular nerves are close together. Sometimes children who have auditory issues (his noise sensitivity) will try to overcompensate by rocking and moving (vestibular).

For anxiety issues the rocking/hair twirling could be a way to self-regulate himself and calm himself. For most people, when we are anxious we are able to internally talk ourselves down, but for him he may not have that ability so he tries to achieve that by rocking/hair twirling.

For any of these, we must use him as a guide to figure out what he is lacking and change the behavior to one more appropriate.

There is so much more that I could report on and I am sure I will add to this post soon, but I think I will publish now before it becomes too large.

Overall, I am extremely excited for this new adventure. I feel like we are finally moving!!

Appointments are weekly, I will report everything we do at the appointments. Please let me know if anyone has any suggestions!!

Tuesday, June 23, 2009

still milk free

We are still doing the milk free diet while we await results of the latest blood workup being done. We believe we have noticed significant behavior changes in boy now that he is milk free, although we have had almost one mess up each day!

We aren't even starting the gluten until after all of these tests are done for boy. If we are on the gluten free diet when he has an endoscopy then those results will be inconclusive too!

A lot of inconclusiveness going on...I think it is just a ploy to keep getting my $30 copay...

Speaking of which, has anyone watched the Michael Moore documentary on health care? I am sure that it is not 100% accurate, BUT it is convincing!!!