Wednesday, June 27, 2012

Life's Unexpected

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We had a garage sale fundraiser over the weekend to help raise money for Noah's Service Dog costs and hippotherapy. The first day and a half was really slow and we didn't do very well due to the hot temperatures we are experiencing right now. But on our last day we raised enough to be able to pay for Noah's hippotherapy stable fees that are due July 16th. We still will have to pay his weekly therapy costs on top of that, but that will at least save his spot. We were so blessed to have the help of friends and neighbors who kindly donated items for sale to help us. We couldn't have done it without everyone's help.

Noah is also doing fantastic at hippotherapy. And I mean fantastic. This is the third week of therapy. And Noah is able to take toys and dunk them in a basketball hoop on the horse, he is bearing weight on his arms, he has improved head control with the ability to look side to side and even lift his head up with a heavy helmet on, and taps the horse to indicate he wants it to move. Chris and I are in awe of how much this therapy seems to be agreeing with Noah. It's such progress for him. He seems to have bonded well with his horse, Dock. The two of them are making a great team. And I love our therapist. She is incredibly loving and supportive of our Noah. It is so great to connect with professionals that have such hope for Noah's future.

Of course with all good comes some bad; we didn't realize that our sprinkler system was broken and it ran for about 9 hours during the night before we realized we had a problem. This of course resulted in $340.61 in repairs and a $109 water bill... ouch is an understatement. Chris tried to fix it, but we simply had to call someone. I have a feeling we were a little took on the repairs and I was upset to learn that there is no warranty offered on the parts or the labor. I contacted the city regarding our water bill, but if we don't pay it in full there will be a late fee assessed to us. I know it was our fault we didn't know our sprinklers were broken but what a big price to pay for it. Unexpected costs for any family are a challenge but even more so when you're already struggling with a child that has such costly needs.

We also were able to get a way for a little bit to a birthday party for one of Noah's friends down the street. She has some challenges like Noah does, but is just the happiest little June Bug. It was a privilege to be able to share in her special day and celebrate how far she's come. Noah also got to meet lots of new people and he even had a very special first at the party. Noah really wanted his dad's Coke that was in a glass bottle, Chris offered and for the first time ever Noah drank from something other than a baby bottle with ease. I know Coke wasn't the best thing for him, but when you have a child so physically affected you celebrate that he drank Coke! We went out and purchased Noah some natural sparkling water since he seemed to like the fizz and he drank almost 4 ounces out of the bottle at dinner last night. This is huge in our world. And we are so excited that one of Noah's accomplishments was witnessed and celebrated by all at little Julia's birthday party. To be others that accept and understand our challenges was just such a rewarding and loving experience. We all are so happy for each other's kids no matter how small or big their accomplishments are. We know how much these things mean. We never take the little things for granted.

We also got a really unexpected surprise at our door; a Stormtrooper with a gift box filled with help for Noah's service dog and a little beenie Darth Vader. It is precious. The outpouring of love from 501st Legion has been overwhelming. I never imagined there were hearts that big that existed - they love Noah as if he were theirs. That is so rare to find that kind of embracing love. Their help is life changing. And they help lots of children's charities in their community. They are having fun all the while making differences in the lives of others. We all should strive to have hearts that big.

We are planning on another fundraiser event for Noah in July. The owner of Pet Empawrium, in Arvada is hosting a fundraising event for Noah's Service Dog, July 14th. We are so blessed for her help. We also met a representative from Kong Dog Toys at our garage sale who has offered to give Noah a gift basket of Kong Toys to raffle off at the event. We are hoping some of the service dogs from Noelle's Dogs Four Hope will be able to make it, along with Arvada's K-9 Unit, Matzo, his handler and my high school friend Ron and his family. We are so excited for another great day to connect with everyone.

Continued thanks for all that continue to pray for Noah and wish him all the successes in the world. Each day Noah is making small gains and we genuinely appreciate all those that are always in Noah's corner. We are so thrilled we get the chance to report on all the great things that are happening for him.


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

Tuesday, June 12, 2012

Days of Summer

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Noah Wearing Daddy's Hat

Noah enjoying the swimming pool chair

Happy Taking a Walk

Noah's grandma got him a bigger baby swimming pool and spiderman floating chair to help him enjoy more outdoor activities. He really likes being outside, but really prefers water temperatures like his warm water therapy which is usually between 92-94 degrees, I will however find a way to hook up the hose to the sink I am sure and string it outside to fill up his pool... I will just have to get a little creative. He had a great time and was all smiles. He also loves to be toted around by his daddy, and wear his daddy's sun hat. Noah can be quite the little character with his infectious giggle that has the ability to melt anyone's heart.

I of course spent much of the weekend filling out waiver request forms for SSI. I had mixed feelings about filing that paperwork out opposed to a reconsideration form. When you fill out the waiver request you are essentially admitting that SSI calculated correctly and are basically begging for your overpayment debt to be forgiven. I however still take great issue with the fact that SSI calculates their figures on estimates and are always 2 months behind with their calculations. To me there simply should be a better way, a smarter way - and easier way. But I'm not the government and I didn't develop the system - I am simply one mom at its mercy. I am very much worried as June is another month with 5 Fridays which means 5 paychecks, which means no SSI or Medicaid two months from now. I have grown to hate months with 5 Fridays.

I continue to have these magnificent dreams about Noah being able-bodied - I say magnificent because to me they are just that. They don't make me grieve, they don't make me long for what Noah isn't doing, but rather it almost feels like God is sending me messages in my sleep of things I get to look forward to. Last night I dreamt that Noah said Dada for the first time. He was a bit older in my dream, and would repeat it when asked. Of course his first words would be that -- after all the bond he has with his dad is the most special relationship I have ever witnessed between a parent and child. Chris loves his little buddy with his entire heart and soul. The two of them are so alike, I can even look at Noah and it's like looking at a mini version of his daddy.

Noah also is rolling faster than ever which I think is largely driven by the need to keep up with Luke's mobility. Nothing like a little sibling to get your goat and get you moving. Of course with the added speed of Noah's rolling comes with extra chapped arms, elbows and face. I am constantly putting lotions on it with little success - darn carpet just wants to keep him in constant rug burn mode. But Noah is very proud of his accomplishments - you can see him beam and glow with achievement when he manages to do something he is trying to do.

Noah also had his first session of hippotherapy. It went really well, he even worked on his walking a bit after riding. His therapist is really positive about Noah which I love. It's great to have people really in Noah's corner cheering him on and believing in him. Noah I think especially enjoys the constant movement and his therapist singing to him. She even brought out bubbles for him so he had something to look at while he was riding. I think this therapy will be a tremendous help for Noah, he really is working very hard when he's on that horse. Harder than I ever imagined he could. He's giving it all he has, so we'll continue to help him and give him all we've got too. Even if that means I guess I have to sell the shirts off our backs... that's just what you do is make the necessary sacrifices, he is worth it. He is worth all of it.

“Prayer is not a substitute for work, thinking, watching, suffering, or giving; prayer is a support for all other efforts.”George Buttrick


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

Monday, June 4, 2012

Obstacle Survivors

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Right on schedule we have received our two weekly SSI notices. One indicating an estimated re-instatement amount for July and another large overpayment demand of $1,358.90 and $52.00 (for April and May 2012). Chris and I are really becoming emotionally and physically exhausted from all that is happening. We're doing all that is asked of us, we sent in pay stubs for April and May timely and yet they still think they have paid us too much. How can this continually be? I feel like all I do is fill out waiver and appeals forms every other day, and that's not an exaggeration, I have certified mail receipts to prove just how much paperwork I am constantly filling out. Does it do any good? No. They'll hold all the power and can determine whatever they feel like against you. No one is hearing me, no one is helping us. SSI isn't even acknowledging any of my requests for informal conferences. I just need someone to rescue us from all this.

There are days when I ask God literally why he's giving me so much because I can't keep up, as strong as I am I am cracking. Bit by bit, piece by piece. How can you not? The unbelievable amounts of stress this is causing in our lives. Always the threat of losing Noah's Medicaid. I have searched out every program Colorado has to offer, the buy-in Waiver, the Hospice Waiver, the CES Waiver, The Long-Term Waiver, there is nothing out there that can help. Noah is on the Long-term wait list (non-income parent based Medicaid) but the wait list is nearly 4 years long and if you are eligible for SSI at the time his number comes up they kick you off the list, the buy-in Medicaid counts Noah's nursing pay against us as well as Chris' paychecks and eliminates him from all Waiver lists if you even have to depend on it for one month due to getting kicked off SSI. The CES Waiver has a 7 year wait list, and Noah was denied twice for the Hopeful/Hospice Waiver. And CHP+ doesn't have the same benefits as Medicaid along with co-pays and lesser coverage and it would kick Noah off his nursing program. I just can't believe that the system has found a way to essentially screw parents like us. There is already so much we face on a daily basis that you'd think we'd at least be able to find piece of mind with Noah's care.

There are opinions out there that Noah will "never" recover or get any better than he is so why are we bothering breaking our backs trying to pay for his therapies and find him help, raise money for a service dog, beg foundations to help us. First I'd like to point out unless you're God you don't get to have an opinion on how far Noah will go. He's already made tremendous progress. This child couldn't even grasp and object and now he can grab and release pegs at warm water therapy upon request. I refuse to roll over and play dead and say this is as good as it gets. I would be failing my duties as his mother. I will search the ends of the earth to find him things that will help him. Neuroplasticity is an amazing thing and the brain has the ability to change itself, with children like Noah it just takes more work and guidance to help build the bridges that were broken. It's not about accepting Noah "as is." It's not about loving him the "way he is." While I always appreciate words of encouragement and comfort, some unsolicited advice often is abuse and crosses the line. For instance being in a Babies R Us store and having a cashier tell me that someone should have just put a thumb down Noah's throat and ended him, or that I must be a martyr because I decided not to institutionalize him or shopping at American Furniture Warehouse and have the sales representative accuse Noah of having the physical capabilities to change a tag on a chair to attempt save his parents a mere $6. And of course you always have those Nosey Nellies who somehow think they could do a better job than you are doing with both hands tied behind their backs. Chris and I have so much on our plates that we simply can't take it all to heart or we'd literally blow up from excessive pain. We are obstacle survivors.

Please continue to hold Noah in your positive thoughts and prayers; that we can once again find a way to maintain his benefits and battle SSI and to work hard to provide him the therapy and equipment he needs for continued recovery.


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

Friday, June 1, 2012

Slow & Steady

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Sometimes I want to measure progress in a sprint. I still have those dreams where I wake up and Noah is running to me babbling in sentences begging to go to the zoo or play in a sandbox. I likely will always dream that way - of what should have been. I continue to believe in all things possible, healing in all directions. I don't want to give up. I can't give up on him. The boys and I were watching Sesame Street today during breakfast, our usual television programming at that hour, and they had the story of the tortoise and the hare. They announce "slow and steady wins the race." Things are really just that for Noah. Slow and steady. But he is making progress and we just continue to try everything we can to assist him in his "personal race" toward neurological recovery.

Sure there are tons I dream of doing for Noah as I send inquires to see how much money it would take to get us to California to do ABM, how much Therasuit therapy would cost, how much it would take to get us to Florida for Dolphin Therapy, how much an Aqualift Bath lift would cost, how do I afford a Freedom Concepts Bike... and on and on... my mind never stops working when it comes to thinking about ways to help Noah. It's become my mission, my main direction each morning. Good morning world, now how can I help my precious child recover from a terrible birth injury?

Life continues to be challenging in all directions. I remain nervous about what is happening with Noah's benefits, his insurance and SSI. Chris and I are both worried about how we will fund Noah's hippotherapy long-term. Registration for the fall is in July and if we continue on we must come up with $1020 out of pocket and another $45 weekly for that therapy, and that is just one out of pocket therapy we attempt for Noah on a regular basis. Of course added stresses of yet another vet visit, adds to to the line-up of unexpected events and expenses.

I've spent many days this week saying to myself just where is everyone? Before Noah's birth I had lots of coffee dates, shopping escapades with friends, outings, phone calls from people... it's all gone now. No one calls to say hello, ask you to coffee or go to get frozen yogurt... we are loved in many ways I know that. And I know many of those who love Noah and our family dearly live often hundreds of miles away. Yet I do feel that we are essentially loved from a distance by all those that do have the ability to be there and aren't. They care - but want to care from a distance. Guestbook comments or entries to remind you they are around - but you never physically see anyone. There certainly isn't anyone I could call to go to the zoo with me or to a vet visit - all of which I continue to do on my own. Often leaving me feeling like the Lone Ranger. I understand that Noah's special needs are challenging - I get that, and I am sure that people are uncomfortable with what they aren't familiar with, but when you get to know Noah and be around him, he's quite the little sweetheart. I live it 24 hours a day, 7 days a week. I know that going places for us requires extra planning and attention, I know that Noah's needs are considered "high maintenance needs" but no one but us are willing to bend our lives to accommodate Noah's needs. People don't just think to themselves how could I include Noah and his family - what would work for them, how could we incorporate them in an activity?

If I have an emergency or need help I know that I likely only have my mother or Chris to call and if they are at work, then I know I'm on my own. No one is going to drop anything in their day to come to our rescue. That is reality. Maybe I should be bitter about it, but I suppose I'm not. I rather feel like the world is missing out on experiencing Noah in all the amazing things that God has in-store for him.

There is a quote that I love by the actor Will Smith: "If you're absent during my struggle, don't expect to be present during my success" I think it speaks volumes as to the heart of what true support should mean. Be there through not just the good times but the bad, the hard, the downright painful. Be the person you would want as a friend if times were reversed and this was your life, because it could be. At anytime life could throw any of us a life-altering curve ball. None of us are exempt, even though many go through living life as if they are.


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