Wow What A Weekend

Well we had a busy weekend, how about you guys???
I am glad it is over and we can get back to our normal routine.

Well has normal as can be expected.

Besides the Thanksgiving weekend stuff, which by the way Daniel completely enjoyed.
Thanks to his cousin Caleb (who will be 4 soon). Daniel and Caleb were hiding under tables scaring people by yelling "BOO", which sent the boys into fits of giggles. He also sat on the floor while Caleb showed him his cars and how they worked. Caleb always seems to know how to make Daniel feel like one of the boys and including him in his games. I am very thankful for Caleb. He is a doll, and a wonderful kid. More so than he will probably ever understand.

Along with that, here is a photo of a "message" I was left in my craft room by my oldest daughter.
Apparently she had a baby shower she needed help with. Wasn't she kind enough to leave such detailed notes on what to make!!
So after a fun Saturday, Caitlin, Tori and I have come up with this little do-dad for a gift.


Here is a cute little "binkie blanket" I also made previously. Too bad we only have little boys in my family. I'm still stuck on making little girl things!!

Another fun filled weekend.....
Now what does the week ahead have in store for us?!?!?

Family Fun Magazine & Kiwi Magazine

If you haven't read these magazines and you have children...

YOU REALLY SHOULD!!

They have TONS of fun craft ideas and things to do with your kids.
And most of them are pretty inexpensive but nice because that create family time.

So, if you'd like to try to win a one year subscription (10 issues) of the Disney Family Fun Magazine,
just leave a comment below on what fun thing you like to do with your child.

Kiwi Magazine- It is also cool little subscription if you're interested in natural and organic family lifestyles.
you can win a one year subscription (6 issues) for the Kiwi Magazine.

I will pick a two winners (ONE FOR EACH MAGAZINE) on December 1st (ends at 9 p.m. EST).

You can enter once a day for each magazine.
**Winner will have to give me their mailing information to get the subscription.
** Open to the US only
** You don't have to have a blogger account to sign up. Just leave an anonymous comment and your email address in the comment!
If you tweet, blog, or facebook it - let me know and you will get an extra entry!!!

I'll tell you I get both and I love them! I get so excited to go through them and find things for Daniel and I can do together!

Good Luck!

Can You Guess What These Are Suppose To Be?

Yep, those are suppose to be TURKEYS!!

Ever try something that looks like it would be simple and it just ends up...NOT Working!


Here is my other failed attempt. OK well not necessarily failed, but doesn't look at good as it did in the magazine!


A Snowball cake - my versionThe magazine version:


Yes the inside of my cake had the filling too but it just didn't look THAT good. I guess if I had a professional photographer to take our photos, it would look just as good? Yeah.......no, I don't think so! But it did taste OK. :)

And this is WHO I have to put up with in the kitchen most of the time.
Isn't she making a BE-U-TEE-FUL Face??
Please, someone help me!

Our Lesson Plans

So I hate being disorganized.

This perhaps might me a little bit overkill, but it makes me feel like I am actually doing what I should be with Daniel.

We don't have a set schedule on things, like at 9 a.m. sharp we are reading a book! Nope, its just throughout the day I have to incorporate it into our routine.

So here is our a.m. book of the week. I will be reading the same book each day to get him familiar with it, then for the activities of the book, I will ask him questions about the story we just read, or we'll play a game involving the characters and such.

I will start with reading him the book, then we will take turns reading. "How?" I'm sure you're asking because you know that Daniel is non-verbal. Well there are a few ways - 1) a button on his augmentative device (Eco-14) that will say the phrase that is repeated throughout the book. 2) with a different computer (the home computer) which we have Intellikeys hooked up to our home computer and he can select it by pressing a picture that we program to be linked so it will speak for him. 3) If you have the Step-By-Step button (Record verses of a song ,poem or story, to encourage conversational turn taking with LITTLE Step-by-Step)
(if you checked out the links you can see these things aren't cheap! Stupid that companies make special needs things so damn expensive - SICKENING - OK I'm off the soap box now :) thanks for letting me complain a little!)

Here is a sample of our weekly lesson plan. Overkill? Perhaps. But can't say I'm not trying to be organized and do right by this little guy!!

(Click image to see larger)

Add into the day the potty training, the exercises and stretches that he needs, therapies and such, oh yes and feeding him and we've got some pretty filled long days!

As you can see I am having issues with finding ideas for the music/movement area....got any ideas??

So, How Goes It?

Well, its been a while since we posted.
Not because of lack of things to post about, but because we've just been kinda keeping it on the low-down and taking things slow and easy.
Its been a lot of getting into a new groove, a new schedule. Getting use to the flow of our life being thrown up in the air a little bit!

Many things have changed -
* the school thing
* the therapy schedules
* the sleep schedules
* the insurance (through the state) fiasco
* Daniel getting use to be around the mom/dad all the time 24/7.
* the busy crown making production line in the house!

Needless to say, we are handling the changes really well. Still making some changes and getting things in order but otherwise...pretty good.

I wanted to say thanks to everyone who offered their experience and knowledge in both the tube feeding and the home schooling issues. I got many emails, some posts and a ton of links to homeschooling blogs, and informational sites. So many that I think I might have my whole school year planned already!!

Daniel's speech therapist from Novi has been awesome too coming up with ideas of getting Daniel 'school' ready and such, so I borrow a ton of ideas and even some equipment from her! (Pictures to come later!) We are still waiting on getting the new IEP scheduled...

Daniel is really doing well at home, and thankfully we've had some nicer days and I've been able to get him outside in the yard. He absolutely thinks that the crunching of the leaves on the ground is a hoot. I've got him stomping on the leaves and he gets a big kick out of me running him through the piles of leaves in his wheelchair. God forbid that a few of the leaves get stuck in the spokes because that sends him into a laughing fit, which of course gets me going.

So if you happen to be in our neighborhood and see this lady running like a madwoman through piles of leaves with a child in a wheelchair....NO she has not lost her marbles, she is just playing and getting her child the excitement that a typical child gets when running through the leaves.

I am sure he would love for me to lay him on the ground and cover him with the leaves but I can't get past the "prissi-ness" of the gross dirty leaves, possible bugs and yuckiness of actually laying in the grass. UUUUUGH. Poor boy is stuck with a mom that has some sensory issues and can't get past it!! So for now, we run through the fallen leaves and have fun!

Doctors Orders - HELP

I'm not sure how I feel about it all, now that I've been told by someone with "authority" that I should do it. And I trust that person, Daniel's pediatrician.

Homeschooling

I use to half-heartedly joke about it, saying I'd love to do it, but now I'm scared! What if I don't do it right? I mean technically its not forever just this year. She said with Daniel's past illnesses already this year and the hospitalization, and the fact that he is STILL not eating good, the weight loss and the results from tests done, that his immune system isn't great. That if we sent him to school and all the therapies that we are putting him at risk. Especially with the whole swine flu and everything going on right now.

The thing about Daniel getting sick is he doesn't bounce back like the typical child. When he gets the simplest of colds, hes down for the longest time. A simple cold for a child with his immune system and the fact that he has cerebral palsy are not a good mix. Colds mean mucus in the lungs, high fevers, no sleeping, lack of a eating...alot of these things bring on the seizures that are so hard to control. Seizures that can be detrimental to a child like Daniel.

So I'm calling out to those parents who have homeschooling expertise....Where do I start, where do I get the resources. I know that there is homeschooling for a typical child and that would be overwhelming alone, but any ideas how do you do it with a special needs child? He loves to learn, but I'm not sure I know all the crafty ideas of how to teach him and keep him interested. What things should I be teaching him? AAAAAAAAAAAAAAAAGH!

Excited and scared, overwhelmed all in one. A ball of nerves! Now I have to still call his teacher and his therapists and get everything taken care of there. I'm going to miss his teacher cause she is awesome. I wonder if we can set it up where they come to the house, or perhaps she can give me weekly meetings and then I go home and teach that to Daniel.

The doctor gave me scripts for "home therapies" but I have no idea how to arrange that. I'm lost can you tell?!?! She calls him HIGH RISK for illness/hospitalizations. Sigh....

Sigh....I guess I've always thought about it, but never had the nerve to really do it...now, its kinda like well I NEED to.

Then she threw out there too the dreaded Feeding Tube Issue. I so don't want it, and he is doing so well when he is NOT sick, but when he is I'm wish we had one.

This past time, if we'd had had the feeding tube we probably wouldn't have had the hospitalization because we would have been able to keep him hydrated. There are so many pros/cons of getting one. He so wants to eat, he loves tasting things, but the muscles in his throat/mouth just aren't' strong enough for him to chew the foods.

So calling out to all those who have feeding tubes....
What type do you have? what are your experiences and such.
I still want to feed him by mouth when we can but when we can't I want to use the feeding tube.
When we have meds we can use the tube. And I don't want a pump thingy at night, I just want to be able to pour it in there at a slow pace (what is that called?). Eventually I would like to be able to feed him real food that is blenderized through the tube. I would like it to not be a permanent thing, so that IF he is ever able to do it, we can get ride of the tube? Is that possible?


HELP!!! Please let me comments on any of the above subjects, I need help.

Crowns for those Kings and Queens

Since we've pretty much been in "lock down" because of sickness
we are getting a little stir crazy, so Daniel and I talked about it and he told me
he wanted me to make him something special...

So this is what we've come up with so far..

A Spongebob crown. Yes, we were bored! But Daniel loves Spongebob.

Of course we're also making them still for people who are ordering. (Thank You)
Here are a few of the custom orders, which I love cause I get to design them pretty much how I want!

This one is Kylie and she needed one to match her pretty dress she was wearing! I think she liked it ;) I love when people follow up with me afterwards to let me know if the kids liked the crowns or not...that makes my day!

This is for Vera Rose
They actually ordered 2 crowns, one for Vera Rose and the other one for "lil' pickle"

This "monster" crown is for Max over at this blog

Also the twin were celebrating a birthday too. They have the reversible crowns!

Now, I'm off to work on the custom crowns for Abby and Ernie (from Sesame Street), two newborn crowns for twins (boy and girl) that are going to be arriving any day!
If any one's interested, we can pretty much make whatever you'd like in whatever size crown, infant, child, and adult..

Yes, we've done adult crowns for a group of runners who wore them for the whole marathon
Looks like they all had fun

www.betterthannormal.etsy.com

He's Walking.....

Day One of Lokomot:

Stats:
Walked 30 minutes on the treadmill
Total of 575 m (which is 1887 feet or .357 of a mile)

Ms. Terri said that most kids only go 15 minutes at the beginning because they get to tired, and through the next 8 weeks work up the the 45 minute walk.
She thinks Daniel will be at 45 minutes by his third session (Friday)

He got to watch a video as he was walking along!
Ms. Terri says most kiddos are crying when they are getting hooked up to the big robot. Daniel cried when we stopped! He wanted more. I have to say it truly is an amazing machine.

Although the picture is a little blurry, look at how tall he is standing up! When we first got him all hooked up he kept looking down at his feet to see them moving. We had to put a mirror in front of him so he could watch himself. He was torn between watching the video and the cute kid in the mirror!

Photo and video editing at www.OneTrueMedia.com

How great is that?!?!
We still don't have insurance approval. We're still fighting for that. But how can we NOT do it?! Of course when we're living in a giant cardboard box...I hope there is enough room for him to walk around! ;)