Monday, March 31, 2008

Q & A

For the people that have stuck it out and keep checking back here on Daniel even though I as his mother haven't' been keeping up on the blog because of my own "blah-ness" that is hanging around too long....We have our Questions and Answers Day! LOL, there have been emails or questions within your comments to posts so I will answer a few here.

1) Yes that is Daniel's bellybutton!

Brittany: And no I don't think its gross, its his belly button for gosh sakes, not like it his privates!

Amy: Oh his little feet are really cool too! I can't imagine anyone painting his feet for a project......oh my that must tickle (I'm thinking of my own feet here!) but I would bet they are precious! Trying to picture someone painting his chubby little tummy to get a bellybutton imprint! now that would be cool!

2) Butterfly

Stacey: believe me it has totally creeped me out that the bug/butterfly is in the house.....UUUGH I can't imagine crickets....what if it got lose? HOLY CROW I'd have to move out! I don't' think that in my writing I have expressed how terrified I am of bugs...I don't know if I should say terrified or just grossed out by the whole bug population. Yes I know they help the environment and all that....but YUCK! And the butterfly is still alive......they say its only a butterfly for one to two weeks and then it dies.

3) Breast Cancer 3-Day Walk

Brittany: Yes its $2,200 per person not the team. So if there are 5 people on your teach EACH of you needs to raise $2,200. If you do not raise that amount by the time the walk is, then you still have raised the amount of money you just can't walk. And I really really really want to walk so if there is anyone out there that would like to donate...please do so, even $5 would help! Thanks a tons. If you'd like to donate or follow my progress, click HERE or send the following link to friends and family and they can donate

4) Back From Nowhere

C: Its funny, but you commented that Q is a lot like Daniel. I think the exact same thing. Actually I watch the video on your blog of Q using the button for his mobility chair. He is identical almost to Daniel.

In regards to Daniel being a swim junkie.....we had his first swim therapy session last week. It didn't go as well as I had hoped it would, but when I got home and thought about it I can understand why.

1) Its a new therapist he has never met

2) He has never been in an indoor public pool, there is an echo and I think it
was freaking him out a bit.

3) I wasn't in the water with him

4) it was a new experience for him and he cried........and cried...........and cried.

Did I mention he cried? But I did good, I told the therapist to do what she needed to do, and she was excellent with him. Didn't' force him to do anything (except go into the water). She sat on the steps for a long time singing to him, comforting him, kicking his legs for him. Towards the end of the 45 minute session she had him pushing a ball in the water and kicking a little bit. So hopefully this Tuesday will be better.

Also, Q can come to play on the ramp anytime!

Amy: I hope your recovering from your funk. I know its not a good place to be in for long and it really really sucks big time.

5) Augmentative Devices:

I can't remember from who, but I do remember reading someone asking about the eye gaze device that we tried out for augmentative devices. This was a really really cool concept. The only problem we had with it is that Daniel is small, his eyes aren't as "OPEN" as a teenager/adult is and that is mainly what the device is for. The device itself seems very cool. They tried it out on me but again Daniel didn't do as well because his eyes were small. His gaze is awesome and it is definitely something we will try again in the future if he isn't able to gain better use of his arms. There is also another thing we use with the computer at therapy. They place a reflective dot on his forehead and there is a laser so it tracks here the dot moves and if he holds his gaze on a certain object on the screen it will select it. If you read this and you want more information on it please send me an email and I'll answer it as best as I can.

Just a cute little picture of Daniel relaxing

Friday, March 28, 2008

Thursday, March 27, 2008

and we have........a BUTTERFLY!!

I was almost ready to give up hope that our cocoon was going to become a beautiful butterfly.
I had just told Lonnie that I thought maybe it got too cold in the house or it just wasn't strong enough to make it.

We woke the next morning and Lonnie said that it looked a little different so maybe take some pictures. I mustered up enough courage to open the box and take a couple shots, but they mistakenly got deleted so you can't see those!!

But hours later on the same day we came home from therapy and voila', we have a butterfly!!!

If you want to see them really close and personal, double click the photo and it should open up larger........and you can really see the the beady eyes, and the fuzziness of the yucky head. UUUUUGH.........I am such a good mom....a brave mom.......I AM A GOOD MOM FOR LETTING THIS BUG STAY IN MY HOME!!

Sunday, March 23, 2008

Breast Cancer 3-Day

As many of you already know, I lost my mother, Betty Tamm, to breast cancer just a few short months ago. My mom fought a long and hard fight for over 22 years. She left behind many family members and countless others who loved her dearly. She passed away shortly after last years' 3 Day walk. She patiently waited for my sister-in-law to pass by her during her 6th year walking.

Sadly, last year was not the first time my life was touched by this disease. I also lost my sister Liz, who died at only 43 years of age. My father also lost his battle against cancer. His was lung cancer. Watching my mother, sister and father fight for so long was very sad. But at the same time, their determination was, and still is, a great inspiration.

Now that my mother's journey has ended, I truly hope this is the last time my family has to be exposed to this horrible disease. I have many sisters, daughters, brothers, cousins, and friends who I would hate to see endure the pains of cancer. If raising $2,200 and walking 60 miles in 3 days will help find a cure and prevent me from watching another person I love suffer and die from cancer, then count me in. I am proud to be walking in memory of my mother, father and sister. And to walk with some of my other family members makes it extra special. This is for you, mom. This is for you, Liz. This is for you, dad.

This is also for my daughters, sisters, brothers and family. May we never have to lose another one of us to breast or any other form of cancer. Please send this link onto your family, friends, co-workers or anyone who you think would like to help us find a cure.

You can donate by clicking here. Or just click the widget at the top of the page. You can also call 800.996.3DAY to donate over the phone.

Thank you for your support!!


Saturday, March 22, 2008

It's Easter......

and there is snow outside ........ and that sucks!

I remember when I was growing up that it was always nice outside. A little chilly maybe, but nothing but a lightweight sweater would be needed. Crap now we have to get out the parkas, scarf, hat and mittens! I am soooo tired of winter.

Anyways.......Hope everyone has a good Easter (if you do indeed celebrate it!)

If not.....I wish you a good day then! ;)

and please ignore the photo of the Easter Bunny!

Update on the butterfly experiment: We are still in cocoon status, hanging from the box top. No movement yet, and even though I am grossed out by the thought of it, I can't wait to see if come out of the cocoon. I am waiting anxiously with camera in hand hoping to caught the birth of it on video. I feel kind of like an expectant mother waiting to give birth! LOL...... It should be any day now.....they say ("they" being the Internet) that it is in this stage for 7-10 days. Today is 7 days.....

Thursday, March 20, 2008

First Day of Spring...

Its the first day of spring today,


............and it is cold.

Tomorrow its suppose to snow again 5-7 inches

and all of my annual plants are poking through the ground!

so far........SPRING SUCKS!!!

Daniel went to a new doctor today. This doctor is the one who will be overseeing all of Daniel's needs for treatments, equipment and so on. And all I can say is......I LIKE HIM!!
He ran late (but what doctor doesn't?) but he gave me as much time as I wanted, he talked to me about many options for things for Daniel in the future, what my plans were for Daniel.
AND best yet......he TALKED to Daniel.....he asked him questions, he WAITED for answers or reactions, and he told Daniel......."Dude, we are going to have a fun time together, you just wait and see!"
I can say that there is nothing worse than a doctor talking and acting like Daniel doesn't even exist on my lap. He told me that he can see in Daniel's eyes and his face that he understands, that he is cognitively ok. And he told me that we will do what we can to get Daniel's body to work for him. It might not be the typical way a person does it, but it will get done. He gave me advise on things that no one has talked about before, gave his opinion, but then said, I also suggest you research and get your own opinion and then we can discuss the pros and cons. He said he never tells a parent NO, he says; "well I believe this, but why don't you tell me why you think it would work." So I am glad to hear that. All in all, he was with us for quite a while and I left there feeling good about our next visit in 3 months.
The doctor also said that we as parents were doing a good job, and its nice to have that acknowledgement every once in a while instead of the doctor looking at you like you don't know what the hell you're talking about.

Nice guy! and Daniel thought so too......and he knows best! ;)

Tuesday, March 18, 2008

Is It Considered A Butterfly Yet??!

Can't even put words to describe the grossness of our butterfly journey.

Amazing and yet so gross.......

If you are a bug'll like the photo.

So We left Saturday for the Dance Marathon and came home to more caterpillar, but this thing....the cocoon. Don't ask me what all the bumpys are that are on the cocoon. I have no clue. It is suppose to be in this stage for up to 10 days.....we'll see if we can document the actual "hatching" of the butterfly, now that might be kind of cool!

Monday, March 17, 2008

U of M Dance Marathon 2007-2008

This weekend we spent in Ann Arbor rooting on our Dance Team.
Unfortunately a couple of the members of the dance team "CC" got sick the day of the event and another had a death in the family and were unable to make it.
Let me explain to you exactly what the Dance Marathon is.

College students from U of M sign up to participate and each member has to raise at least $300 each. There are hundreds of kids that do this event. The money that they raise goes to two different pediatric therapy of them being Beaumont Therapy which is where Daniel goes. It helps to fund the summer programs and events that Beaumont puts on for all the kids, that insurances don't generally pay for.

Here is one of the dancers "gettin' her groove on" with Daniel, and boy o' boy he was loving the attention!

So throughout the year, the UMDM group puts on different events to raise money and for the "dance families". Being a Dance Family means you have a child that is in therapy and you go to lend moral support to the dances of the team you are assigned to. This year they raised over $428,000 to help the kids. It is an awesome event. It lasts 30 hours and the kids cannot sit or sleep for the entire time. They have activities and line dances and many different things to keep they awake (aside from the LOUD music!) It is a very cool thing to be involved with, they involve the whole family, not just the therapy child.

Here is a photo of Daniel and Victoria in the "family" tent at the marathon....I absolutely LOVE this picture, and yes to the other families in the tent.......I do have very beautiful kids!!Very cool, it was our first year doing this, but in a heart beat I would do it it was a nice weekend away.

Here is Daniel and Tori getting ready for the pool at the hotel. (I love Daniel's expression here!)

Friday, March 14, 2008


Alrighty then.....let it be known right now, from here on out, until the end of time, till God takes me from this earth........BUGS ARE NOT MY THING!! I am a girly girl, true blue! I have recruited Lonnie into taking the photos of the "beautiful butterfly" transition.(my a$$!)
It takes everything in me to let this sealed cup stay in the house. I walk in the room where it's stationed and I shiver. So, for those of you who also are totally sickened by bugs.....don't look at the photos that follow. Now, Daniel on the other hand, likes this "thing" and when we tell him to say bye bye so that I can immediately seal the cap again, he cries. He likes to see it wiggle and move around. Whereas, I am trying not to do the "heebie-jeebie" dance and fling it across the room! (For those of you who don't know exactly what the "heebie-jeebie" dance is.....we'll try to document it at a later date, its very amusing!)

So, I am sad to say that one of our caterpillars did not survive. Perhaps the huge thing that remains living in there ate him. I am not sure.

Below: Day Four (Tuesday)

Day Six: (Thursday). We didn't get a photo on Wednesday because I forgot to remind Lonnie to do it (either that or American Idol was on, and in our world......nothing interrupts American Idol!) Please Note: The bigger one is lining itself up to eat the other dead one!
Day Seven: (Friday). We have had it for exact 7 days and NO we did not zoom in on it with the camera to make it look bigger! The first of these photos I took with Lonnie holding the cup. He felt the picture wasn't focused enough to actually see the gross fuzziness and the teeth on Mr. Caterpillar, so I steadied myself and held the cup while he took the photo. This is when we should have documented the "heebie-jeebie" dance in action, but I hate my photo being taken let alone while dancing around trying to wipe the grossness off my hands. I am still trying to erase the mental distress that I actually was mere inches from this bug, and it wasn't locked in the cup.

But I have to admit, you can really see how much it has grown in the second photo. That is one big frickin' wormy thing! So, for those of you who are actually looking at the photos, kudos to Lonnie for the fine photography!


There will be no photo on Day 8, as we will be going to the U of M Dance Marathon kick off on Saturday. Our dance team (Team CC) along with many other college kids will be dancing for 30 hours straight to raise monies for the Beaumont Pediatric Therapy in which Daniel visits almost daily for his therapy. Daniel is the poster child for Team CC, and is going to keep the kids on our team motivated! Plus its a weekend away in a hotel with a pool......and how much fun it that?!?!

Sunday, March 9, 2008

Oh Flutterby.......where are you?!!

ok so I promised to show you the progression of the caterpillar to the butterfly. (Hopefully they will make it!) One is looking a little sickly so I am not sure if we'll have one or two to release. The first picture is the box which will house the flutterby when he is born.
Below: Here is what the caterpillars look like on Day One. The stuff that looks like sand is actually their food, and they will stay in this little cup until they start their cocoons.

Below: Here is Day Two (Have I told you before I HATE bugs of all kinds?!)

Below: Day Three-- You can tell one is thriving....the other one might just be dead, we're not sure. See how quickly the other one is growing? and we're only on day three

So that is what we have so far on our Flutterby exhibit at Daniel's House of Butterflies.
When I was pregnant with Daniel and we found out I was having a boy, I was worried. Heck my mother was worried for me! She even said "You don't handle boys well". What she meant by this is in general I don't like dirt, I don't like dirty grubby little boys who talk back, who like bugs who eat dirt and boogers. Remember up until this time I had 4 little girls.....I don't do "boys"! LOL, my my how times have changed. Now mind you I don't particularly LIKE bugs, but for Daniel, I will tolerate the bugs, I will tolerate the boogery noses, the dirty hands, the farting and laughing and the burping and the rating of the burp!

Welcome to the world of Daniel!

Friday, March 7, 2008

We Are Back From Nowhere

ok, so we've been slacking lately.
I got the emails asking if everything was ok.
So I figure that I have to sit and write what is happening.

I was absent because of a few reasons:
1) I'm still kind of in a "funk" that can't be shaken
2) I found that I was getting (searching for the right word to use)....I guess you could say envious of other children who were doing things that I so badly wish Daniel could do. (and will some day)
3) I was trying to get my life back, I seem to have lost it somewhere along the line and still haven't found "myself" yet but I'm getting there, I can feel it.

So to begin with the last couple weeks:

Therapy: We get approval for therapy from CSHCS every 3 months. This set of months (March, April, May) we were denied for Occupational Therapy. PARDON ME?!?! Well thank gosh we have a wonderful therapist (Ms. Linda) who fought and wrote new goals and called daily until it got approved again!! YEA! so we have occupational therapy for 3 more months but then they said it was our final approval and that we could not continue after May. Well, all I have to say is "that fat lady hasn't sang yet!, don't count your eggs before they are hatched, because I will be fighting that decision and trying to convince them that Daniel does indeed need OT.

Physical Therapy: Another therapist that is outstanding (Ms. Carol), she fights each time and gets us 3 visits per week. Our goal is to get Daniel driving his wheelchair without running everyone over. I laughed the other day when I was reading the Terrible Palsy blog and saw that Moo's mother has the same issues!! Check out the March 4th post
and I also read that at Dura Mater, that "Q" is doing great at getting the red button to get himself moving! I love it, that is so wonderful for you guys! See we were missing in action but I kept up on how all you guys were doing!

On another hand we are starting next week a new form of therapy on Daniel that we will be trained by Ms. Carol on how to do and we will be doing it during the night when Daniel is sleeping. It is called TES (Threshold Electric Stimulation)
it took us a very long time to find that some of the equipment that is needed for the TES treatment, we already posses because we do TENS therapy at home and during therapy also. They are two different types of therapy. With the TES therapy it is going to take a long time and a lot of dedication, Daniel will have to wear this 6 or of the 7 nights a week, and it will take months too see improvement, but after hearing his therapist say she has seen it work and I watched the video on the website Tiniest Steps Video, I knew that no matter what we were going to do this therapy. Now granted it might not work but it certainly can't hurt right? So we are very excited about that.

On the other hand (tee hee hee, we're running out of hands!) Daniel is also starting in 2 weeks Aquatic Therapy!! YIPEE!!! We have been on a waiting list forever and finally got in. Mind you this therapy is not covered by one of our insurances so keep your fingers crossed that it will be covered by the other one. Aquatic therapy is AWESOME for kids with CP. And to top it off Daniel absolutely LOVES water in any form.....bathtub, pool, sink, running his hands through it, splashing (I'll have to dig for a photo of him in the sprinkler this past was a hoot!) Anyhow, we are very excited for that to start also!

HOUSE: The house (floor is finally done! wahoo! and it is awesome) now it is just Lonnie and I who have to finish up painting the ceiling, walls and molding. When we were having the floors done (the same friend that did the work on our floors did the ramp and the walls and ceiling) to make the house more presentable instead of a ramp just dumped in the middle of the house, he made it look like it was there from the beginning of time and it was just part of the house and not making it look like it was just plopped there for a handicapped person. We absolutely love it. If anyone ever needs work done and you need someone who does a wonderful job and understands that money for people with special needs is not something to be spent haphazardly, let me know and we can get you his number! Awesome job Mike, Awesome!

We also think that our house is haunted (or my children and maybe my husband) does! I'll post on that one later.

Look in the next few days for a post as Daniel is watching caterpillars that will grow and make a cocoon and hatch into a beautiful butterfly. We have an exhibit that is set up in the local mall here (Daniel might be on the news tonight! I'll let you know). Ther butterfly exhibit benefits the Beaumont Therapy that he goes to, so we went today where they released hundreds of butterflies...each of the special needs kids got a kit for watching the butterflies so we will post and you can all watch and see if we can successfully get a couple butterflies to take back and release in teh butterfly house.

Hope all is well and take care~