Rainbow Connection Wish Trip - Florida/Disney

Alright...........here are a few of the photos from Daniel's wish trip. (Does it feel like when people bring out photos of boring trips and expect you to be excited about it?!?) :)

Daniel's Limo arrives to take us to the airport. He thought he was way cool!

Daniel on his first airplane ride. I can't post the picture of his teenage sister....as she looked as pale as a ghost and close to vomiting and hyperventilating. It was also her first flight (and probably her last trip on a plane!). Daniel on the other hand thought it was funny and watched out the window the whole time. Tori came close to grabbing for the puke bag a couple of times. The seat belt fastened light stayed on the whole time....TONS OF TURBULENCE!!

Once we got to Florida (with a few issues on the way there: airport security lost Tori's ticket for 5 minutes, my temporary crown on my tooth fell out and broke!) there was this wonderful lady holding up her little sign that had "Give Kids the World Village Welcomes Daniel Spranger" (GKTW). She took us to get our rental car and got our bags, gave us directions on how to get to the village.......and we were off.

They checked us in and gave Daniel AND Victoria presents! They knew our name when we walked in, and it was so very very cool

Here is a photo of The Castle of Dreams that is at GKTW. I will just say we could have stayed here for 7 days straight and not gone to any amusement parks. They treated us like royalty. Everyone said hello and talked with Daniel and Tori. There were different activities planned each day, they had a train to ride and two heated pools..........and and we must not forget....food to eat at all times and the wonderful ice cream parlor that was open everyday from 7:30 a.m. to 9:30 p.m. And remember everything at GKTW is FREE to its residents!! Can anyone guess how many banana splits/ice cream cones/sundaes were eating in all our time there? Would you care to guess the weight gain of the family members!?!

In the Castle of on the ceiling is a pretty amazing thing. It is very heart wrenching actually. There are over 60,000 stars with the names of Wish children who have come to stay with them. Each child writes their name on the sparkling gold star and it is given to the star fairy and each night the star fairy takes the stars and puts them on the ceiling where they will stay forever. It brings tears to my eyes thinking of all those special children who have been there because they got an unfair deal. They were brought into this world, and they suffer and they have a life threatening/terminal illness. I wonder how many of those children are still here blessing the lives of the people around them, and how many have passed away. The next day, you receive at your villa a little card from the Star Fairy and she tells you where your star is located and you can go find it.Sea World. Daniel loves to watch the shows.......preferably in air conditioning!! Daniel does not sweat. His medication makes it very difficult for him to tolerate heat at all. And were were lucky to get absolutely beautiful weather everyday in the mid 90's, with no rain except the last day (gave us a day to try to recoup!) SO we adjust schedules a little bit and stayed in the GKTW village (there was plenty to do) and went to the parks later in the days when it wasn't as warm or as crowded.One of the Parks at Disney- Animal Kingdom. Very nice, I myself loved the safari ride!

Here is Daniel enjoying a turkey leg, that he had to hold! On our trip Daniel's terrible twos (almost 3's) started to kick in and he wanted to do everything himself with out help! We couldn't feed him unless he was holding the spoon, and if you touched his arm to help guild him.....he pushed back. If he held his spoon and I tried to feed him with another spoon, lips clamped shut! the first 24 hours there he wouldn't' drink his bottle either....which is where he gets all his yummy goodness from. Nope.......only thing I could get him to swallow for liquids was BLUE Gatorade and it had to be in a squeeze bottle or forget it~ Isn't he the cutest?

Lonnie did a "stand-in" for Daniel because he was sleeping. Handy Manny is one of Daniel's favorite characters!Here is the fam....and Daniel not being too happy that Piglet is touching him. They are OK to see from afar...but he does NOT like them up close. If Daniel could have he would have said "He's touchin' me, he's touchin' me..AAAAAAH!"

Here we watched a show called "Animal Actors" which was basically a whole bunch of animals that have been in movies and they explained how they get the animals to do all the tricks. After the show was over we were told to wait to move out of our special seating. That was so that when everyone was out...Daniel got to see some animals up close and meet the dog from the movie "Men in Black"

Here is Daniel when he is happy that we are going to see Mickey Mouse, Little Einsteins, Winnie the Pooh & Friends and some of his other characters. This is Daniel giving me the evil eye and not being happy cause the show was "All Done" These are Tori and Daniel on the ferry boat coming back from one of the parks. There are tons of pictures so I obviously can't post them all. I also asked Tori for her camera because she had been taking pictures the whole time we were there, but when I looked at the photos all I saw were pictures of random guys. She obviously is a teenager!! She was taking photos of all the "HOT" guys she saw so she could show all of her friends when she got home. See what I have to deal with!

One Week After Wish Trip to Disney World

Its been one week since we came home from our trip and we have fully recovered from some excited stuff. I have finally unpacked everything! Unfortunately I can't post any pictures because we returned home without our battery charger for the camera (left that in our wonderful Villa) which has a completely dead battery so we have no photos as of yet! As soon as we get it back I will post all the great things that happened!

The Magic Bullet

I'm sure all of you have heard of this little product, and all I can say is....IT IS AMAZING for what we need! As you may have read in prior posts like here, here, and here, Daniel's feeding times have been a touchy subject. We have decided (as you have read) to continue to feed Daniel and plump him up a bit. Up until the past few weeks, we had been primarily feeding Daniel jars of baby food (stage 1 and 2). He was getting very tired of the tastes (bland) and he was always watching us eat our food with that look of "I want THAT." So, we started to add BBQ sauce, A1 or other sauces to it to liven it up a little. This was our solution for a couple of weeks. Then he caught on! This leads me to the high praises for our latest purchase of "The Magic Bullet". (We didn't get it off the website site, but found it at a local store for a lesser price!)

This bad boy can take anything and blenderize (not sure if that is a word or not, but I like it!~) it to just he right consistency for our soon to be chubby lumpkin. And thanks for every one's comments and suggestions in prior posts, we are getting in tons of calories. Daniel is eating with more enthusiasm and, for the most part, eating everything that we are. He is just getting the extra butter or heavy whipping cream or oil (sick!). Over the past week he's eaten chicken pasta Alfredo, scrambled eggs, sausage & pancakes with syrup, spaghetti and meatballs, baked beans with hot dogs, and a home made 7 layer burrito supreme! So, as you can see, he is getting a tastier menu and hopefully gaining some weight and enjoying his food more!

Oh, and before I forget to mention.....he hasn't choked or aspirated yet! (Knock on wood!) And yes, I am taking the Magic Bullet with us to Florida next week! I don't know that we could manage without it anymore. Such a nifty little product.

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!~ :)