Let the Hard Times Roll...

SSI keeps hitting us hard. Yesterday yet once again a new overpayment notice of $1,077.46. No matter what we try - reporting Chris income monthly, yearly it doesn't matter. They give it to you and want it right back. I have no idea what happened to our monthly amount dispute or if he'll even receive a check this month or even be eligible for Medicaid. I can't even begin to describe how exhausting this all is. So now yet again I have to file a appeal/request for waiver and request for informal conference. That is all I ever do weekly. It doesn't feel like a system that helps you at all, but that continually finds way of making your life even more difficult than it already is. I don't know what else to do other than to keep going through the motions with them. I detect there is no answer to these problems, no one that is going to fix it, no one that really cares...it's not them that is going through it. It's not their pain, not their life's trials - after all they all get to go home after a 9-5 day and lead normal lives, without wondering if their disabled child will or will not have benefits in the morning. It's just a job to them, what do they care if they are affecting other people's lives? They don't. There's no consequence for them doing a great job or a bad job.

There some parts of this special needs journey that just feels like it suffocates you. We keep trying to be positive, we keep trying to overcome all the hurdles but around every corner there is always something to just beat you down so hard that you keep asking yourself really do I have to get up again just to get knocked down just as hard?

I applied for a grant to see if we could get Noah a Freedom Concepts Bike - one that is customized just for him. A representative flew out from Canada several weeks ago take all his measurements and see how Noah personally moved, as no two people with CP are exactly alike. And this bike would give Noah literally the freedom to look and ride like any other child. The price tag on the bike is something just as far out of reach as most things for Noah. Chris and I remained excited and hopeful when Freedom Concepts gave us some foundations to try to see if they would help Noah with the cost of his bike, yet I got notification yesterday that my answer of "see attached quote" to the question regarding the price of the bike was insufficient. Sometimes the harder you try the harder you fall.

Yet we trudge on, through all the muddy waters, through all the hardships because God depends on us to for Noah's sake.

Love,




Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's 501st Legion Fundraiser

We attended Noah's 501st Legion Picture Fundraising Event at Starfest Saturday. Noah did pretty good with the huge crowds. There were so many people to be overwhelming for anyone let alone a little guy with sensory issues and he handled it like a champ. He didn't even get scared of any of the characters. He lasted about an hour an a half before I think we just wore him out and we headed home for a brief break. It was so nice to be able to see Noah's photo booth and was just speechless at the amount of work that everyone at 501st put in to help Noah. We also got to meet friends from another special needs family for the first time, and our sweet friend Jenny and her beautiful daughter Ari came to visit us. It made the day just magical that so many people came to support Noah and be with us.

We were invited back to the 501st Legion's banquet celebration dinner that evening at Garcia's. Sometimes dinner hour can be unpredictable for Noah, he tends to like to eat and run, so we were a bit nervous if he'd make it through the entire night. But he did fantastic, only getting fussy towards the very end because it was nearing his bedtime. He loved it when there was applause during speeches. We think he thought they were all clapping just for him! He ate tons and laughed lots. He particularly loved the re-fried beans they did with cheese. It was supposed to be an appetizer for Chris and I - but Noah ate both of ours, which was a dream come true in itself to share our dinner with Noah - something he could eat alongside with us safely. Then he moved onto his dinner and then polished off every inch of a cup of ice cream. We sat at the same table with David Prowse, the actor that played Darth Vader in Star Wars, it was the most amazing night we've had in a very long time. And were gifted with an autograph and pictures of David Prowse with Noah. He was such a kind and nice person. Even holding Noah's hand. You simply couldn't ask for a nicer person to meet what a pleasure it was. Who would have ever thought that "Darth Vader" would one day be holding Noah's hand! The things dreams are made of - and how it makes my heart just swell that Noah had such a special time.

Sometimes on the special needs journey you have days where you feel very small, unnoticed, and far a part of the rest of the world. It's easy to feel beat down and alone. Our struggles are many, but not only did 501st Legion Mountain Garrison help Noah with a fundraiser, but they went out of their way to make us feel important and loved. Checking back with us to see if we needed anything or if we were comfortable. It was a room full literally of love. It's easy for me to talk about Noah and his challenges with large groups of people, but not so easy for me to talk about our hardships along the way with helping Noah with things his insurance won't cover. Sometimes there are simply not enough words to thank people for the blessings they have been in our lives. I tried to get through a brief speech at dinner without tears, but it simply didn't happen. Chris and I are simply beyond touched and grateful. It was a once in a lifetime opportunity to experience what we got invited to last weekend. Something we will remember and hold dear to us for years to come.

 Noah at the 501st Legion Dinner

Noah with David Prowse (aka Darth Vader)

All total 501st Legion Mountain Garrison raised $815 to help Noah with his Service Dog. It is more than we could have ever hoped for. A true blessing and gift in our lives. What an amazing, fun organization that moves mountains to help charities and people in their community.
Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

SSI Complications Continue

After being rudely stood up by SSI on my scheduled phone conference I called them yesterday. The caseworker refused to speak with me and had someone relay the message that she'd call me today at 10:30am. She did indeed call promptly at 10:30am but it was a very short conversation as although she admitted she's had our faxed pay stubs for sometime, she hasn't at all worked on our case. I asked why she didn't call as scheduled - she didn't even offer me an apology but that she was double booked. And no one could bother to call me to reschedule? There were no asset/income questions asked as she stated she'd previously do, said that I would get notification in the mail once again of Noah's new payment and any new over- payments. I feel like I am going round and round with SSI. I am just continuously getting yanked around. I asked to speak to the manager, and of course I get transferred to a line that rings into eternity... no voice mail - just constant ringing for 8 minutes until I hung up. I call and get resistance when I ask for the manager and get simply transferred to voice mail. I left a message with my frustrations about their lack of good business practices, I doubt I will hear back. I think they really anticipate that you'll just stick your tail between your legs and go away. That is not an option. I have to fight on for Noah. They can continue to put me through whatever and I will not go away. I just genuinely wish they would finally fix whatever is going on and get it right once and for all. So I await more paperwork from SSI, and likely more appeals and requests for informal conferences that I will need to fill out to challenge them. We are no more ahead than we ever were.

Noah's 501st Legion Picture Fundraiser is going on this weekend. Don't forget to come down and join us tomorrow if you can. Get some really cool pictures for a great cause! Again here are the details of the event.

Vaders Fist, 501st Legion (the bad guys in cool outfits from Star Wars) will be at Starfest this weekend and are holding a photo booth for you to take pictures with characters for a donation to help Noah get his Service Dog here are the details we hope to see you all there!

Denver Marriott Tech Center
4900 S Syracuse St
Denver, CO 80237
(303) 779-1100

Friday, April 20, 2012 6:00 am -
Sunday, April 22, 2012 5:00 pm

StarFest is a combination of several entertainment conventions rolled into one big event that takes place over three days. Started in 1977, it attracts thousands of people who are fans of popular culture for a weekend of social interaction, fun and games. Activities take place at three adjacent convention hotels and include: Studio Presentations, Onstage Q&A Sessions (with actors, producers & directors), Autograph and Photo Sessions, Costume and Talent Contests, Film Festivals, Model and Art shows, Collectible Marketplaces, Educational Seminars, Discussion Panels, Musical Performances, Dancing, Kids Events, Fan Club Presentations, and tons of assorted Klingons, Jedi and other creatures thrown together.

The will have a photo booth to take pictures with characters for a donation towards Noah's Service Dog. Noah will be making an appearance mid-morning/late afternoon on Saturday for people to meet him. We are so excited and forever thankful for this opportunity to help Noah.

“Aren’t you a little short for a stormtrooper?”
“The Force is strong with this one.” - Star Wars

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Too Good to Be True...

Hold onto your hats... Saturday, by surprise SSI made phone contact...

A new caseworker, who refused to give her first name, oddly. I know her only as Ms. Brooks. Bye-bye Betty I guess... and Debbie her supervisor offering me now Ms. Brooks and a new manager with no last name. In any event whatever they want to call themselves, I was hopeful that Noah's case would finally get taken care of. She said her phone call would be considered my "informal conference" and that she was waiving our most recent overpayment due to all the confusion and problems that we had faced with SSI. A relief. She also told me once again they were requesting I fax in Chris's February and March pay stubs, even though we were told to quit reporting income for a year. They were all faxed in Monday and Ms. Brooks set up a phone conference today at 11am to go over Noah's "new" monthly amount based on income and possible "new" overpayments that exist as a result, in addition to once again doing another asset and financial interview (something we are only supposed to have to do yearly), yet I've answered those series of questions now three times in less than 6 months... yes I still own the same vehicles... we own nothing of value, and no we haven't suddenly won the lottery... although the lottery one isn't a real question they actually ask you... I'm just adding that for good measure.

In any event I was cautiously optimistic yet here I am having waited over an hour on a phone call that isn't going to come. Once again confirming SSI has no follow-through or good business practices. I shouldn't be surprised. But I did give them the benefit of the doubt. So we're really right where we left off - which is no where, with the exception of one waived overpayment. Yet, I seek comfort in all that tell me they are facing the exact same problems with their special needs children and SSI and Medicaid. We are not the exception but rather the norm for what is occurring with these agencies.

In the spirit of good news to report: We received a call that Noah has finally gotten a spot on the waiting list for hippotherapy. We have set up a time for his evaluation and providing all goes well we will start hippotherapy sometime in May. The evaluation will be $45, a deposit of $350 and then $45 weekly. Chris and I are just approaching things one day at a time. We have waited so long for this opportunity for Noah that we pray that we can continue funding all the therapies his insurance will not cover. We pray that hippotherapy really agrees with Noah. We are thrilled that he now has a spot for therapy if the evaluation goes well. Please pray for him that it does. We have big hopes it will help Noah increase his trunk and head control - and maybe the beginnings of speech as they say horses often have that effect on some special needs children. We will never stop praying and hoping for all things possible.

We are excited for Noah's fundraising event this weekend. It was simply an unexpected gift come our way. Hopefully it will be a fun day, and that Noah does well with a personal visit at his fundraiser. The event sounds like it will be lots of fun and a really big 3 day event. Chris is even more thrilled as he loves the idea of Star Wars characters helping his little boy. He is very excited to go.


Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's Fundraising Weekend Event!

We have an amazing announcment for Noah's Fundraising:
Vaders Fist, 501st Legion (the bad guys in cool outfits from Star Wars) will be at Starfest this weekend and are holding a photo booth for you to take pictures with characters for a donation to help Noah get his Service Dog here are the details we hope to see you all there!

Denver Marriott Tech Center
4900 S Syracuse St
Denver, CO 80237
(303) 779-1100

Friday, April 20, 2012 6:00 am -
Sunday, April 22, 2012 5:00 pm

StarFest is a combination of several entertainment conventions rolled into one big event that takes place over three days. Started in 1977, it attracts thousands of people who are fans of popular culture for a weekend of social interaction, fun and games. Activities take place at three adjacent convention hotels and include: Studio Presentations, Onstage Q&A Sessions (with actors, producers & directors), Autograph and Photo Sessions, Costume and Talent Contests, Film Festivals, Model and Art shows, Collectible Marketplaces, Educational Seminars, Discussion Panels, Musical Performances, Dancing, Kids Events, Fan Club Presentations, and tons of assorted Klingons, Jedi and other creatures thrown together.

They will have a photo booth to take pictures with characters for a donation towards Noah's Service Dog. Noah will be making an appearance mid-morning/late afternoon on Saturday for people to meet him. We are so excited and forever thankful for this opportunity to help Noah.

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Noah's Easter Weekend

Noah Easter Morning
Noah Spinning his Egg

Noah had a good Easter. It was the first year I attempted naturally dyed eggs and they turned out rather well. By far my favorite was the vibrant blue from the purple cabbage. We of course brought out the spin-a-egg gadget for Noah that we got him last year so that he could spin an artifical egg round and round. He had fun attempting to push and spin his little egg.

Of course Easter weekend came with its share of busy work. We are still heavily on SSI's radar. In addition to the SSI overpayment they sent, shortly thereafter we received paperwork informing us that yes, yet again, they are lowering Noah's monthly payment. After they told us to quit reporting Chris' income because it was too much for them to handle each month and that they would just audit us yearly. So without reporting his wages, SSI has implemented their telepathic capabilities to figure that they really owe Noah less... I cannot figure out this agency for the life of me. So I spent parts of Easter filling out appeals and requests for informal conferences for what feels like the one-hundreth time. I should be an expert by now, yet it still takes up way too much of my time. And of course like all the other paperwork I've filled out - I expect I will never hear back from them. After all they aren't obligated to respond or mail you paperwork with the status of any of these appeals.

The Easter bunny brought Noah some new DVD's to watch: Snow Buddies, Air Buddies and Treasure Buddies. We were hoping to introduce Noah to what Golden Retrievers look like so he'll be excited about the arrival of his service dog. We weren't confident that he'd watch them as usually he screams and protests anything on TV other than Elmo, but he adored Snow Buddies from the second it started playing and now he seems to get very upset when we try to put anything Elmo related on. Just wants to watch his Buddy movies over and over. Thank goodness these Diseny movies have a continuous play option. Noah of course has his favorite spots, particuallry the Buddah dog doing his Yoga poses and "Ummm" sounds. He also thinks that Mud-bud is the funniest thing when he rolls in the mud. It's so nice to see Noah growing and his interests changing. This is what would happen to any child his age, they just grow into different interests. Noah is no exception to that.

We have a long way to go in fundraising for Noah's Service Dog. We are are so grateful for all the support and prayers that have come our way.

To Help Noah:
Noelle's Dogs Four Hope
15954 Jackson Creek Parkway, Suite B, PMB #453
Monument, CO 80132
WITH: PAYMENT FOR NOAH WARDEN indicated on your donation

Love,





Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.