Therapies – OT/PT/SP

In June we didn’t have therapies because there were mix ups with insurance, approvals and it was just a big headache.  So starting in July we have been doing 3 times a week of speech, 3 times a week of physical therapy, and 2 times a week of occupational.

 

Well we need our approval for September for physical therapy, and we just found out yesterday that we didn’t get approval because they (the insurance co.) needs more information.  Because generally it takes them 15 working days to process it, that means no PT through the month of September.  Irks me.  Then come the end of September and we’ll have to go through the same thing for OT and Speech.  Its never ending and always frustrating.

 

We are currently with Beaumont for our PT (Love Ms. Carol) but at the beginning of November we will be switching over to Children’s in Novi for our PT as Daniel will be starting the Lokomat.  I am so very excited about this therapy, but hesitant because we will be losing our Ms Carol who we have been with from the beginning and because it will be hell with all the insurance issues and changing locations.  But I think even with all my hesitations that I have, it will pay off for Daniel to get experience on the Lokomat.  It is the only one around in Michigan that has the pediatric legs.  What is nice about Children’s is that they seem to have more of the cutting edge type things, that traditionally you would have to end up paying for out of pocket.  Fortunately they are able to bill it through insurance.  I have talked with the PT at Children’s (Ms. Terri) and she said she would review with us all the different types of suits and cages when it is closer to our time to switch over there.  She even asked if I thought Daniel would like to demo a new suit that they are getting at the end of September.  HELL YEAH! 

 

Daniel is making great strides in many areas.  Has he mastered them? Some would probably say no, but if you’re with him every day and you can see all these little things he is doing, you would be amazed.  They might not sound huge, but if you knew what it takes to even raise you arm when you have spastic quad CP you’d be AMAZED.  People probably think I’m nuts when Daniel reaches his arm out when we’re in the store to try to knock things off the shelves, and I tell him “That’s Great Daniel, can you reach up higher and get the next shelf!”  Why is it so great?  Well a number of reasons; he wasn’t able to raise him arm above shoulder level before, he most definitely did NOT have the control to do it, and he is doing it purposefully.

 

He is back to grabbing the spoon to attempt to feed himself.  Again his arm movements are much better and stronger.  He can get the spoon to his mouth with minimal spillage.   He also likes to attempt to get drinks himself (this is still shaky and he ends up wearing most of it – thinks its funny too!)

 

His speech therapy is going great. I will be uploading videos we have been taking during the summer at his therapies.  Daniel tends to be a typical snotty boy at times, and will not show what he can do to certain people.  So I video tape and I show them so that they can see.  I tend to believe that he does this because he knows that those people do not believe in him so why should he show them his stuff! ;)

 

I am crossing my fingers and hoping we see many changes in the next 6 months with Daniel.  Cross your fingers too damn it!

Bennett

I know that there are some people out there who don't believe that there is a God.
I know that there are also some people out there who aren't sure if they believe.
Then there are the people who just don't believe. All of that is fine, and I totally believe each person if entitled to their own beliefs.

But what I would like to ask if that you take just a minute or so out of your time, and pray, say a chant, light a candle, whatever it is you might do. Talk to whoever it is or whatever it is that you look to for guidance and assurance.

In that minute ask for things to go well for Bennett. He is a little boy who has uncontrollable seizures daily, and hopefully today will be the last of the days for him to suffer from them.
He is currently in surgery right at this moment and his parents are waiting for news. I can't even begin to imagine what they are going through.

Bennett is having a Temporal Lobectomy to remove a brain tumor/cortical dysplasia that has been causing him devastating seizures, resulting in a regression developmentally (cognitively speaking) to essentially that of an 8-9 month old. With this surgery the goal is to stop the seizures .

You can check on his dad's blog to see how he is doing, and wish them well.
And for that moment you took for Bennett, I personally thank you.
Because if it were me waiting for Daniel to come out of surgery, I would want you to do the exact same thing and get everyone else you know to just send a good vibe their way.

Modified Activities

I was talking today with one of Daniel's therapist about wanting to find activities for Daniel to do outside of therapy.

I can't seem to find any. I know when my other kids were younger they were in dance classes or swimming. I for the life of me can't find any that are for special needs kids, or ones that don't cost an arm and a leg, or your first born child (OK maybe I'd give up the first born if I had too! LOL just kidding Caitlin!).

Anyways the therapist said "Oh sure there are...."
so now I am calling on my blogger & computer friends...

What activity do you do with your child that you have had to modify to be able to do it?
I'm looking for idea. I want Daniel to be able to experience everything else that any other child does. He shouldn't have to be penalized because he has special needs.

ZhuZhu Pets Giveaway

These things are so way cool. Does your child want a pet and you just don’t feel like taking that responsibility on? THIS is the pet to get, and what's nice is you can’t kill it!! Follow the link and check out the giveaway on our other page. Sign up to win, its really simple!

One good deed idea- even if you personally don’t have a child that would like this, enter anyways and if you win give it to a child that has a birthday coming up or wait until Christmas (soon to be right around the corner) and donate it to an organization for needy kids!

One good deed deserves another. Karma – what goes around comes around!

The Ins and Outs

Lets retrace and see what has been happening in our world the past couple weeks

1) I am recovering from surgery
2) Tori is recovering from surgery
3) Lonnie was off of work for a week taking care of Daniel and myself
4) Transformed bedroom to craft/office area
5) High power usage of said office area for tons of crown orders (no complaints here!)
5) Daniel still rockin in his therapies
6) Getting mentally prepared for school to start shortly
7) Here's the big'un...Daniel is no longer on the waiting list for the Lokomat. He will be starting at the beginning of November. I know its still a little ways off and we could have actually started sooner but then we would have had to take a morning appointment and that meant he'd miss 3 days of school a week for 8 weeks.

While I'm semi-ok with that, I knew in the back of my head that it probably wasn't a good idea. So instead of the end of September we are waiting for November.

eBeanstalk – Activity Bus Review!

Picking toys is not easy and there is a toy website called ebeanstalk, dedicated to selecting good, safe educational toys and learning baby gifts. BUT they need help from moms like me to help pick the toys. The toy they sent us to test out is called Activity Bus from Plan Toys, who makes whimsical and eco-friendly modern wooden toys.

I was very excited when I got this. We don’t have many toys that are wooden. The bus is a great toy for individual play and provides the opportunity for continuous open-ended play. The idea that it promotes role-play with the little characters and help expand their imagination.

The bonus feature was that the bus opens into a schoolroom with desks, a chalkboard, books & two little characters.

We waited a little while to do our review because I wanted to introduce to my son about getting ready and going to school. How he would be traveling this year on the bus! He seemed to really love the bus, but I didn’t want to stop there with the review. I also tried it out with my grandson (2 yrs old) and he thought it was great to push it around and have the people driving the bus. It was also fun singing the all time favorite “The Wheels on the Bus” song.

I also decided to show it off off to my oldest daughter who is a preschool teacher. She instantly fell in love with it too! Decided that she was going to have to borrow it to bring to her school for her theme week of “transportation”. She’ll have to fight her little brother for it!

I love that it didn’t require any batteries. There aren’t too many toys around where you can instantly take it out of the box and not have to have batteries! This in itself made this toy a hit in my book! It is very durable, and well made.

If your one of those parents that is “green” Play Toys is a great company that has a multitude of eco friendly toys made out of recycled materials that reduces the impact on nature.

Plan Toys also aims to create toys for disabled children that helps to enhance skills for disabled children and provides them with opportunities for mental/physical development.

I am definitely putting these items from Plan Toys on our “wish list”

Check out the Circus Set and the Wooden Parking Garage.

So all in all, this toy was reviewed by a 4 yr old special needs child, a 2 1/2 yr old, a preschool teacher, and a mom (that’s me!) and everyone had a ball with this toy! Highly recommended. Endless ways to play, which is always a nice thing. We give it 5 High Fives out of 5!

Thank you eBeanstalk for the opportunity!

Summer Sponsored by Solo Cups

Ok, how many of us have decided to have a little get together and we run to the store to grab those very well known red plastic cups? Well check out this! We were selected to test out and review the new Solo Squared Cups.
Its the first of its kind, its SQUARED and its fun!

Solo Squared is available in 18-ounce and 9-ounce plastic cups in the standard well known red and also blue colors. Solo Squared combo packs with 9-ounce cups, lids and multi-color straws help to reduce spills and are the perfect fit for smaller hands. How many times have you given a cup to a little one only to have it "slip" through their hands. Solo Squared also has four ergonomic grips, ensuring a more comfortable and reliable hold. By the way the 9 oz. cups come with a lid and straw making it PERFECTO for the little ones!

I also like these cups for the every day use. I hate doing dishes! So when we sit down for lunch or we picnic outside, out come the cups!

Here are some fun little facts about Solo Cups.
Did you know.....
*Solo® Cup has been an American icon since its red party cup was introduced in the 1970’s *Solo cups aren’t just for drinking, they’ve been used to make everything from Halloween costumes to flower pots to a runway dress seen on a popular TV show
*Solo cups are a backstage must-have – rock bands and movie sets stock their dressing rooms across the country

Do you have any fun & innovative uses for these cups??!
Or are these just a staple you have for your summer time fun!!

Check here for stores that carry the Solo Squared Cups.
Check out here for the coupons for these fun little cups
If you're quick you can enter their contest also by just sending in a photo of your fun time using these cups!.

DE-FUNK-IFYING

A friend of my used a word the other day in an email and when I read it, I kind of giggled.

"Defunkifying"

Thanks Keri for putting a word to what it is that I need to do. I realized that I get into these "funks" every once in a while. Usually I have one funk a year that is a whopper and lasts for a couple weeks.

My current funk, I think we're going on a few months now.
definition of a funk per Melanie - Everything sucks. E V E R Y T H I N G!
No matter what you do, it doesn't make it better.
You might wake up in the morning and feel like "OK today is a new day" but within an hour you just want to crawl back into bed and shout to the gods " I GIVE UP!" or to each thing I'm going to list I want to say "I DON'T WANT TO DEAL WITH IT ANYMORE - LEAVE ME ALONE!"

Family life = SUCKS
Therapies = SUCKS
Work Stuff = SUCKS
Finances = SUCKS
Stress Levels = SUCKS
Doctors=SUCK
Surgery/Tests = SUCKS
Self Esteem = SUCKS
Weight = SUCKS BIG TIME
People in general = SUCK

If its not one thing its another. I know, I know...gotta look for that rainbow, the cloud with the silver lining.

Yeah well - SUCK it!(I say that with the utmost love in my voice)

Ok so I need to defunkify, and I need to do it quickly! Otherwise everything is going to go in the crapper and we can't have that!

TOMORROW is a new day........right?!?!

Birthday Boy’s Day

We went Bowling and met some other families who also use augmentative devices. Daniel had never been bowling before so we weren’t sure if he’d like it or not. As you can tell from the photos, he had a blast.

He tried it first with the ramp, he didn’t get a strike but he still beat his sister!!

He was showing Caitlin how to push the ball and make it go. She was having a hard time!!

Of course we can’t go without tasting everyone’s food!

Ms. Pat (Daniel’s Speech Therapist) put together the group meeting of all the AAC users. She knew today was Daniel’s birthday and surprised him with a little cake and a present too. Can you guess? YEP Daniel got a Thomas the Train and track!(see the scowl? I was touching his train. This obviously wasn’t met with approval!)

Here, Daniel is telling Daddy that he wants to bowl and knock the pins down.

Sister Caitlin has her hands full with nephew Zachary and Daniel on her lap at the same time.

And here is Daniel just hammin’ it up.

A couple photos of the birthday cake train. Not sure how great it’ll taste (we made the fondant from scratch first time ever!)

Daniel of course got his birthday crown too. Can you tell he likes trains?

Guess Whose Four??

Happy Birthday Daniel

Please Stop Laughing at Me…

I just finished reading this book that I got a couple days ago.  Title is listed above by Jodee Blanco.

 

Its one of those books you can’t put down.  Not the romance novel, or anything like that.  No mystery, no suspense.  Its a true story about Jodee Blanco, and what she had to deal with growing up.

 

Its one of those books that you want to stop reading because you’re horrified by what your reading, but you can’t because you need to know what they did to overcome.  Its about a typical girl who was bullied through out school for no apparent reason.

 

It made me sick to think that people could be so heartless, so cold.  That they couldn’t see what they were doing to this girl, and how it was killing her each and every day.

 

I usually don’t recommend books, because the books I generally like, others don’t.  But this one struck a nerve, and made me think, and remember things about my high school days.  It made me remember something that happened to me. Of course nothing compared to what Jodee went through in the book. But none-the-less, my little episode that I can still remember vividly (as insignificant as it was) has come into my mind and how I feel about myself many times since high school. I can’t imagine what Jodee endured.

 

I am baffled that people can be cruel, for no reasons.

Think back, can you remember something you might have said or did, that you regret doing just so you could fit in? Or because you were going along with the crowd?  Do you think it affected that person and do you think they still remember?  Did you feel bad about it afterwards?

 

Like I said I remember who it was, where it was at school. I remember how it felt to be the brunt of someone's mean joke. And I know the affects it had on me.  Do I think that person remembers it?  probably not. Because it really had no ill effects on them but to make themselves feel better.

 

If I ever said anything about someone or to someone I don’t remember, and I certainly hope to God that if I did, it didn’t hurt them/stick with them.  And if it did, I am sincerely sorry. I try to be a good person, but of course I am not always what I want to be and I am sure at some point in my high school time I was a little $hit.

 

So any regrets or memories you’d like to share?

Wordless Wednesday

Cooking with Daniel

Well for the past few weekends we have had some cooking festivities going on in our kitchen. First weekend we made the Rainbow cupcakes with Victoria, second week we did our 14 layer cake with Caitlin. A while back we made these little chickies. So this weekend we decided it would be Daniel’s turn to pick out what we made.

He chose to make a secret family favorite!

It’s a bit complicated so make sure you have pencil and paper to take notes.

Instant Jell-O – Chocolate Pudding w/cool whip and sprinkles!

Take the pudding packet, mix vigorously with milk

refrigerate

serve when firm with a large amount of Cool-Whip

pick sprinkles in color of your choice.

He absolutely LOVES to measure and mix things up. Of course the best is the taste testing afterwards!

ENJOY!