Cares For Kids Radiothon

Today (Thursday, May 8th) is the 96.3 Radiothon.

Click here to listen to the interview

Daniel is part of this incredible event this year. We were asked to do a radio interview to share Daniel's amazing story - his journey through a scary diagnosis, and how he is overcoming some hurdles and still struggling in some areas. But with a lot of help and a lot of willpower...he will overcome his "disabilities".

The Radiothon is called "Cares for Kids", and the morning crew from the radio station will be in the South Towers of Beaumont Hospital (Royal Oak) all day to raise monies for Children's Miracle Network for the pediatric programs at Beaumont. The money will help various pediatric programs, purchase equipment and help families that aren't able to afford treatments for their children.

Luckily, we have pretty good insurance and we've been able to get physical, occupational and speech therapy with Daniel for more than two years so far. We are at therapies multiple times a week, so you can imagine that we know a few parents from the waiting room and we have some incredible therapists. I am not just saying this because of the radiothon. Look back in older posts and you will find that I rave about Daniel's therapists. We have been very blessed to get therapists that are the best. Daniel absolutely loves the people who he works with. They brighten his day, and I hope he does the same for their days! :)

If you are here checking out Daniel's web page because of the Radiothon - WELCOME, and thanks for stopping by! Feel free to look around, sign Daniel's Guestbook, leave a comment, say hello! Come visit us again, we like visitors :)

We have our up days and we have our down days....and we have our reflective days.....come along for the journey!

To make a donation to "cares for kids" click the link below:

CARES FOR KIDS Children's Miracle Network

Here are a just a few links that show the wonderful things Daniel has received and things he has accomplished because of Beaumont Therapies:

-Daniel will be getting a special needs bicycle this year which was funded by CMN
-Therapy updates
-Surgery at Beaumont's (newer) Pediatric Floor
-Power Wheelchair (a must watch!)
-Other great videos

Thanks for stopping by and don't forget to check out the 96.3 and Beaumont pages!!

PRESCHOOL?!?!

Daniel had Early Intervention today to get "evaluated" to see if he would fit into the POHI Preschool. I hate that acronym - POHI (Physically or Otherwise Health Impaired). Just bothers me for some reason. Anyways, the teacher and the occupational therapist from the preschool program that Daniel can potentially attend next year came to visit. Daniel of course was tired. Doesn't that always happen? When I want people to see how well he is doing he is tired and doesn't want to show his stuff! He did well, heck, I'm sure he was nervous! We walked into a room with all the adults and two new ones to boot! He was a little shy at first but then within a few minutes, he was smiles and eyelash batting away!

I can say that I am happy that they came as it gave me a chance to ask questions and get a little comfortable with the fact that my baby will be attending preschool next year! YIKES!! I think Daniel is more ready for it than I am. I am deathly scared. There are so many thoughts going through my head. It is scary to let a typical child who can walk and talk to go to preschool, but to send one off who is non verbal and non mobile, it VERY SCARY!! So, when the time comes, believe me there will be plenty of tears and anxiety attacks and they won't be from Daniel! :-) I'm sure I will need some type of medication to cope with the fact that there will be someone else with my child and its not me, daddy or another family member!

Both women were extremely nice, very informative and very sympathetic to mom's concerns! I learned that IF Daniel is going to this school, that he will NOT be the only child that is nonverbal. That there is a teacher and a couple para-pros there each day, and that the occupational therapist is there generally 3-4 days a week, so goes for the physical therapist. The speech therapist is located within the building and will work one on one with the child for augmentative devices if needed along with group time. It all sounds very nice and the teacher has personal experience with special needs, so that was also comforting.

I am sure even knowing all of this and getting warm fuzzy when talking with the woman, that I will most likely be camped out in the parking lot or sitting outside the door, just in case I hear Daniel's little voice and his little "Mawwwwwwwwwwwww" (mama!)

Yes Daniel....you have a tongue!

Yes Daniel....you have a tongue!, originally uploaded by SPRANGER.

well isn't he just the cutest little boy you've ever seen?

Why Did No One Tell Me...

So, why is it that for whatever unknown reason, no one....I mean NO ONE has ever said "Hey, I know you have a child that has swallowing issues, have you ever heard of......"
NO! Not even the doctor who did the modified barium swallow test...nope, instead when Daniel aspirated.....it was G-TUBE. We have been going to some form of speech and/or occupational therapy for years....and no one has ever said, "Hey....have you heard...."

So, I'm sitting in Daniel's therapy room at speech and just finished telling his augmentative therapist about his failed swallow test.....and I look over and see a flyer sitting on the counter, I stand up, grab it and read: "When You Can't Swallow" Questions and Answers about treating Dysphagia with Electrical Stimulation.

I thought to myself, hey wait a second....that word was in Daniel's diagnosis of PMG. (I wasn't sure exactly what the word meant, but I knew it was something to do with swallowing!) I start to read through it as Ms. Pat is working with Daniel, and I was floored. What the heck. I can't believe no one has said anything about this or even said "Well, maybe it would work!". UUUUUUUGH.

So, the next words out of my mouth as I hold up the flyer for Ms. Pat to see......"Why isn't Daniel doing this?"

Ms. Pat: "Well, we can."

Sigh..........I am just frustrated lately....it seems if I don't happen upon these types of things on my own, or if I don't have my nose buried in special needs catalogs, or doing "google searches" for special needs information, or yahoo support groups, word of mouth...that we would go without for so many things with Daniel. It just seems like we have to pry information out of organizations, or people, doctors to get Daniel further in programs that will help him.

So, when we get back from Florida.....we will see about getting Daniel started with this new form of therapy to help strengthen his throat/cheek muscles. Now, it might not do anything...but if it doesn't hurt, and it doesn't stress him out....WHY AREN'T WE TRYING IT? why was the first thing out of the doctors mouth G-TUBE?? Why not, "Hey, try this therapy for six months, we'll do another modified swallow test, see where we are then, to decide if a g-tube is needed?"

If you are a parent new to dealing with a special needs child, one thing to remember....YOU ARE YOUR CHILD'S ONLY ADVOCATE...YOU ARE YOUR CHILD'S VOICE......YOU MUST RESEARCH, YOU MUST ASK QUESTIONS, YOU MUST KEEP TALKING UNTIL YOU ARE HEARD, YOU MUST BE STRONG AND STAND YOUR GROUND, YOU MUST NEVER EVER GIVE UP!!!!

ok I'm done with the rant!~ :)

Calories....

One would think as I am walking through the grocery aisles, picking up different items, shaking my head and placing it back on the shelf, that I am doing so because the item is too high in calories and/or fat.

Quite the contrary......I'm looking to fatten up a little boy. Making sure that he keeps that scale tipped at least at the 30 lb. mark! Do I sound like the witch from the gingerbread house in Hansel & Gretel?

I felt like going over the loudspeaker at the store

"Attention all Grocery Store Shoppers....The first person to get to the little boy in aisle 2 with the highest calorie pureed food or condiment will receive a $20 off their bill!"

There is hardly anything that I could find that had any large amount of calories in a small amount of food. Daniel doesn't eat a lot, so it really needs to be packed with the calories. Anyone reading this please....send me recipes, give me ideas of things to make or buy things that he can eat. He can't have solids, he can't have thick pureed foods like dry mashed potatoes....so whatever it is, it needs to be blended and liquified. Jars of baby food have approximately 70 cal. per 4 oz. jar. that's not much. I'm looking for something more!

Packin' on the Pounds

My chubby-lumpkin!
Just got back from seeing the dietitian at Children's for our monthly visit.
Daniel's weight is up to 30 lbs 6 oz! that is the 25-50 percentile for his age and height! WAHOO!!!!

G-Tube? NO
Cautious feedings, most certainly, as he is high risk for aspiration......but he is thriving. Never had pneumonia...and won't get a g-tube until we feel he needs one.

We're following our guts here and we might end up regretting it later. But right now I so strongly feel we are making the right decision. Again, I am not saying no to a g-tube forever. If it is needed at a later date and Daniel is showing signs of needing it.....I'm all for it. We have obviously been doing something right for the past 2 1/2 years since he has never been sick from aspirating. He is not silently aspirating, when he does (rarely) get in distress he does what we all do, he coughs. Not all kids with special needs do this, some don't have that come to them naturally. So for now, yes the information is stored in my brain and it might resurface in a while, but for now.......its stored, duly noted.

Now, off to the dentist to get his chipped tooth fixed! No, I couldn't tell you what the heck he chipped his tooth on either. He eats pureed food for goodness, and he doesn't chew on toys! Just woke up and a chunk of tooth missing! Whats up with that?!?!

Oh by the way.........18 days until Florida trip!!! Anyone have any advice of traveling with a special needs child? I've never done it. Heck how about traveling with a child in general............by plane.........never done it! LOL

Twenty Days and Counting

...OH MY GOODNESS!!

20 days until Daniel and part of the family get on a plane and fly to Florida for 7 wonderful, hopefully stress free days!

Stress Free..........ahhhhhhhhhhhhhhhhhhh
Can't wait. Just hope I make it through the next 20 or so days...just came up so quickly and now I feel like I'm scrambling to make sure I get everything I need to have done before we leave. Because I've never flown with Daniel or Victoria for that matter, I'm nervous about how they will both handle it. If there will be issues with any of Daniel's medicines, his car seat, our luggage, his wheelchair....just plain ol' nervous.

For those of you who don't know, Daniel was granted a wish through The Rainbow Connection in Michigan. We thought about it for a really long time and we were going to use the wish for equipment or therapy, but in the end we decided that Daniel works hard enough every day and does 9+/- therapy sessions a week plus many things at home. He deserves to have some fun. So Disney and Florida it is.

Today he received an email from the "Mayor Clayton" of Give Kids the World Village. Here is how it read:

Dear Daniel,

I just heard the GREAT news - You are coming to visit me and my friends at Give Kids The World Village!! Wow, we have so much to do to get ready for you and your family - I can hardly wait for you and your family to join us.

Now what was that you said?? Ohhhhhh you want to know what kind of fun you can have at Give Kids The World??

No problem! Check out this link and see what awaits you at our Village:
http://www.gktw.org/pre/default.asp

I'll see you soon!!
Love and Friendship,

Mayor Clayton

Now how cute is that?!?!?! He is going to be either really really excited about the 6 ft tall characters or he will be terrified. We shall see.......

By the way, here is a photo that I did get from my "Duh! Day" when two little friends, that have the exact same RARE brain malformation that Daniel has, came to visit. I only got a photo with one of the girls.......because I had a brain fart and forgot to get more photos. That has been happening a lot and I'm very surprised at myself as I am usually that obnoxious person who always has to document everything with photos!

Daniel and Maeve

(Daniel just woke up and Maeve is as chipper as can be!)