Monday, May 21, 2012

Thankfulness in Small Things

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This month has already been full of so many life's trials; a dog with a leg injury that required a vet visit and meds, Chris splitting his head open on our metal shed that required medical attention, Noah's benefits - or I guess lack thereof.

The special needs journey often times has a way of putting hefty weights upon your heart. You ache with emotional and physical pain; sadness about the past, worries about the future, problems of the present. Finding pleasure in the small things can bring about the biggest relief in a challenging day. A neighbor who brings you a chocolate goodie just to tell you that you are loved and thought about, a cashier who unloads your cart for you because they sense you need help without asking for it, a bird that lands on your doorstep just to peep at you softly before flying away. Nothing is ever taken for granted and you find beauty and peace in places you never dreamed you ever would.

I can't report with complete certainty that Noah's Medicaid will continue in June, however from all the phone calls I have made it seems that he is still showing active at the moment, we are hoping that the appeals we have filed will at least stay Noah's benefits for June until SSI indicates we will be reinstated in July. They are calculating March as a 5 week month which puts parental income over the guidelines, thus being a slow agency that is 2 months behind, our penalty comes in June with $0 benefits owed to Noah. We of course were not requested to report monthly until this year so we never faced these on again off again problems with SSI and 5 week months. Yet they tell me we are not permitted to report yearly now. So I anticipate that this will very much be an ongoing problem for us. Noah is on the long-term wait list however I was informed that due to his high wait list number it is estimated he will be on that list 3.8 years. That is a very long time in the world of a struggling special needs family. I also also a bit confused as Noah is on the C-HCBS waiver wait list which offers him the same benefits he receives on SSI/Medicaid - I understand that there is also a CES waiver but have been told the wait list is 7 years but that it offers more services like home modification and respite care. Both programs terminate between the ages of 17 and 18. Which seems like a long time to be on the wait list, only to get kicked off a few years later. Of course no one really tells you these things and I only found out about the CES waiver program due to Noah's current crisis without SSI benefits and me desperately seeking out anything on earth program wise that could assist Noah. Regardless none of this is something that can help us in the near future. Our only hope is maintaining SSI and therefore keeping Noah's Medicaid.

I am going to pray that come June Noah still has insurance. And am asking for all prayers to come our way that Noah will get through June medically insured. Although we have become dependent on SSI funds to get us through helping with Noah's out of pocket costs, our primary focus is the insurance over his financial benefits. I've called as many advocates that I can track down, Colorado Coalition, Family Voices, the ARC, governor's offices - none of which have panned out at all. I think I'm on my own. I am a solider of one.

There are however some good news I hope on the horizon; we received confirmation that Noah was approved both for a Flamingo Toilet Seat, and Full-size Sleep Safe Bed. The equipment vendor says we are the second family that they have worked with that has been given approval and all involved seem surprised that it was approved. Of course we were denied previously for a toilet seat but asked that a second request be put in so we could pursue a timely appeal. We never expected we'd go straight to an approval without a fight on either item. Yet God hears our prayers, he knows we are working as hard as we possibly can for the precious soul he has intrusted in our care.

I am a little worried that Noah will have some adjustment problems from going from sleeping on a mattress on the floor to a bed with a frame and closed in sides. Sometimes change is challenging for Noah, I am praying that the windows in the bed will allow him not to feel so confined or boxed in and that it won't put him on sensory overload.

Thank you all for your continued prayers and positive energy, we sincerely hope that the storm will let up soon.


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

Tuesday, May 15, 2012

Calling All Angels

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I never received the promised SSI paperwork updating Noah's eligibility status in the mail so I called Boulder County Social Security this morning and got yet another representative to talk to. He told me that due to the "estimates" that they have calculated for Chris' income for the month of May Noah does not qualify for SSI and therefore his Medicaid will also be terminated starting June 1st. I don't know how they can just "estimate" and that be acceptable for putting Noah in a position where he is without insurance, without therapy, and even equipment benefits. May isn't even over yet, how can they just guess what Chris will make? This also means that Noah's CNA care will also be terminated with Medicaid and he will not have nursing services. They say Noah's SSI and Medicaid will likely be reinstated in July when they "re-estimate" for June. That does us no good when we're without insurance for a month or more. You cannot have a medically fragile child without insurance - you just can't.

I've done literally all I can do, I have talked to all the supervisors there all the managers, I think quite possibly every case worker they have at that office. They all tell me sorry, so sad... that's how it is. I've tried contacting political agencies, I've tried networking, I've tried it all. I'm on my knees literally calling all angels. I don't know what else to do, I'm worn out, I'm beaten down, and frankly I'm feeling beyond defeated. I spent countless hours trying to take care of Noah's affairs each day - his therapy forms, grants, fundraising, SSI & Medicaid, taking him to therapy, working with him and I still fall short. I put everything I have into being his mother and all that goes along with it. And no one could truly understand how emotionally and physically taxing this all is unless you were living it.

Of course as most things go, you can't feel other people's pain so unless it directly affects them in some way it doesn't mean a thing. I am just some poor mom on the other end of the phone that is losing insurance benefits - I could really care less about Noah's SSI anymore - they give it to you and always slam you with an overpayment and ask for it right back, it's become more of a hassle than a help in our lives - but we genuinely need his Medicaid benefits that are unfortunately tied to Noah's SSI. Noah is on the long-term Medicaid wait list but it will take years to get him off that list.

There is a buy-in program I understand for Medicaid starting in July which we'll have to pay a monthly premium for Medicaid - a service that should automatically be provided for Noah that we will now have to pay for to give him security. That sounds like it is our only option at this point - but that still leaves Noah a sitting duck for all of June should anything go wrong. And you never want to be without insurance when you have a child like Noah. A medical crisis could happen anytime - he could need to see a doctor at anytime. He needs weekly therapy - he needs equipment benefits. We just put in a 2nd request for a toilet seat and a sleep safe bed, both of which are destined to be denied when Medicaid kicks him off June 1st.

It just feels like we have this huge weight on our chests and we can't breathe. Chris and I have exchanged lots of worrisome phone calls to each other today, we're both very distraught and upset parents. We're doing the best we can for Noah and we just continually get slammed down. We're just another family falling through a system that is supposed to help us. And apparently there is no net to catch us.


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

Sunday, May 13, 2012

Your First Warden

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Noah today is Mother's Day. Although each day I am gifted with your happy squeals and bright blue eyes each morning it reminds me of the true meaning of the gift of motherhood. There's nothing like God's ability to show me how wonderful your miracle is. A moment never passes where I am not thankful that you are here with us fighting on strong. My little trooper. My hero in a tiny body. Every part of my day is dedicated to you and your brother. Really this day reminds me how incredible it is to be your mom. You remind me of all the blessings life has to offer, you are my courage, my hope, my reason for perseverance, you have become all my greatest dreams and inspire me to be all that I can be.

Some moms may be getting spa treatments today - pedicures and manicures. They may have breakfast in bed served with a single rose... pictures hand drawn for them by each child they have... songs of love sung to them, hugs all day long. Being your mom my day will be different. I will have the pleasure of waking up to your light giggles as you realize the morning sun is peaking through your curtains, I will be gifted to hold your body and lift you out of bed and pick out the cutest little outfit I can find and struggle to dress your stiff body. You will likely splatter your yogurt all over me with your waiving arms, and drool a little puddle of toothpaste on my clothes as I carry you to the floor where I will spend lots of time trying to find the right show that you want to watch on television. We'll practice our daily routines of trying to sit with assistance, walk, and make eye gaze choices. You'll tolerate your little brother crawling all of you and occasionally get upset that he is walking and you are not. The both of you will find many moments to make me laugh. I'll spend the day pureeing your meals, changing your soiled linens, and looking at the week ahead remembering which day we have to be where for therapy. I will fill out government forms and finish therapy paperwork. It might all sound completely unglamorous and unrewarding. But it's not. You are my reward and anything that comes along with you is completely worth it. You alone have taught me the true meaning of unconditional love.

There are these lyrics to a song by Alanis Morisette titled "Guardian" that remind me of you. I fancy it I suppose even more because it makes mention of me being your first Warden - and after all that is our last name. But it's all true I will be everything you need me to be and more because you are my life. You are what my Mother's Day is all about.

"I’ll be your keeper for life as your guardian
I’ll be your warrior of care, your first warden
I’ll be your angel on call, I’ll be on demand
The greatest honor of all, as your guardian"
To Listen to the Complete song:

As always Noah you make each day I am on this earth worth living. You have taught me immeasurable patience, empathy, faith and hope. I am so glad I get to celebrate being your Mother today.
Excerpt from“A special mother” by Erma Brombeck

"Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle, and will know it!”


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

Tuesday, May 8, 2012

Never A Break from SSI....

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SSI sent us yet another letter in the mail yesterday - this time telling us starting June 1st Noah is once again not eligible for SSI which means his Medicaid will also be terminated June 1st. I have no idea how this is even possible considering they sent confirmation of Chris' pay stub figures in a letter dated April 20, 2012, we then get three days later a letter dated April 23, 2012 saying based on those pay stub figures for February and March 2012 that Noah was due $599.98 monthly. Now without any additional pay stubs sent yet for April, they have magically calculated that Noah is due nothing in correspondence dated May 5, 2012. This was the exact same problem we had in March, due to someone's mistakes in calculations. Once again I have 3 weeks to get them to fix the problem, the same amount of time it took me in February to get someone's attention to reinstate SSI and then another 9 days in March Noah went without Medicaid benefits until someone at Medicaid recognized he was still SSI eligible and reinstated his insurance benefits. I called again this morning to try to fix it all, just spoke to whoever answered the phone and was thankful it was a person with perfect English that could understand me. I could tell right away that she detected something was wrong when she put me on hold to investigate what was happening with a supervisor. After returning to the line the representative said the supervisor, Debbie, was aware of the problem and assigning it out of another claims representative to work on and I'll just have to wait for further notices in the mail. Keep in mind this is the same supervisor who won't take my calls or return them so I'm not holding my breath that there will be quick, easy or accurate resolution to this. Having the two agencies tied together is really terrible. Chris and I are so exhausted - mentally and physically with everything in our daily lives.

Noah has had some rough nights where he isn't sleeping. We can't figure out why or what is bothering him. We offer him countless bottles, change his clothes thinking maybe he's having sensory issues to feet pajamas, turn the heat back on in the middle of May because we think maybe his hands are cold and maybe he needs heat, we try cuddling with him, we tried it all and he just continues to do his cackle-cry which usually means he's uncomfortable or wants something. My mind wanders - is he in pain, is he sick, does he have a stomach ache, is he afraid of the dark... anything as to what it could be. Three hours later he finally goes back to sleep. He is completely happy, well and full of giggles this morning like nothing in the night was ever wrong. Chris and I are so exhausted. In the last few days we've probably gotten a total of 3 hours of sleep each night. I lay in bed with tears welling in my eyes just praying until my hands go numb asking God if he can just help me. Just grant him the gift of communication so I know what to do.

 I've followed all of God's and society's rules. I am a good, loving, kind person and sometimes I just sit and wonder what did I ever do to deserve all this pain all the worry, all the problems in each day. Did I cross a black cat on a dark night? Did I break a mirror I didn't know about and am suffering a bought of plain bad luck? What is it so I can undo it?

Chris accidentally crashed Noah's baby bottles into the spice rack shattering them last night, leaving us with only a couple left to use. Noah will only drink from these bottles. The bad thing is we found that Medela's 8 ounce glass bottles have been discontinued, so after lots of hunting we decided to purchase Evenflo glass bottles and we are praying that they work for Noah as he won't drink from just any kind of bottle. The online reviews say they are compatible with Medela breast pumps leaving us hoping they will also be compatible with Medela bottle nipples. Noah still likes his bottles warmed so we aren't able to use plastic ones as we don't want to heat plastic in the microwave. In a regular world breaking of bottles wouldn't be a big deal for a typical child - but in the land of special needs it feels like a mini crisis knowing Noah can't and won't drink from just any kind of bottle. If someone shadowed me for 24 hours and realized what this life was like they'd probably run for the hills and never look back. But this is the reality of our lives.

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

Friday, May 4, 2012

Green Light for Hippotherapy

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Green Light for Hippotherapy Today was Noah's Hippotherapy Evaluation to see if the program would be good match for him. Noah was accepted for hippotherapy to begin in June. The facility was really nice, they had other handicapped riders there, two adults that were in wheelchairs. It was really nice to see the care, attention and expertise they have for therapeutic riding. Everyone was very friendly, loving, nice and most of all patient with Noah. Usually Noah has extreme difficulties with things on his feet or head, but tolerated the riding hat beautifully - even given considering that it was slightly big for him. He was a bit unsure I think making some nervous squeals, but was very happy as when the therapist would sing to him or when the horse was moving. Noah loves to be on the move. This was the first time that we handed Noah over to someone for therapy while we sat on the sidelines. It was different for us just watching Noah go round the indoor arena on a beautiful horse named Dock.

Noah could only ride with his legs apart for a brief while and then had to switch to side sitting on the horse. He had three attendants and a therapist assisting him ride. We hope that this will very much help Noah with his head and trunk control. He had many moments of slouching and looking downwards which the therapist assured us was contributed to the weight of his helmet which we must use for safety. Chris was able to join us today as we needed his help since it as a slightly longer drive for Noah to get there. He usually doesn't have many opportunities to witness Noah participating in therapy since he is at work when most of them are scheduled. I detected sadness today from him as he turned to me saying "it's terrible that we even have to do this." In translation I knew his heart was trying to tell me it was difficult for him to watch his first born son struggle so much. And it is difficult to watch Noah struggle to do something that should come naturally like lifting his head, or sit, but we have to swallow that pain and tuck it very deep so that we can continue on to help in the only ways we know how. We must only show him only our support and praise - never our fear and pain.

This, like most of Noah's therapies are not covered by his Medicaid. It will cost: ($800 June 4th-August 11th) ($1120 Sept 4th=December 17th) ($1120 January 21st-May 11th) $3040 for 1 year. These are not easy things amounts for us to come up with, if you imagine that we do 6 other types of therapies that are also not covered by Noah's Medicaid and are out of pocket costs as well. I try to hunt foundations and grants the best I can, but there are only so many avenues of help, only so many times you can even fundraise before you've exhausted all the goodwill and love the world can give to Noah. Not to mention that there is a level of self-pride that you must continually swallow each time you ask for help. It's not easy, and nothing about it is fun. It's probably the only time I've ever felt ashamed in my life - admitting that I cannot help my child with our own resources. It is taking more than a village it feels like it is taking the universe most days just to get through Noah's daily needs. No one could ever truly imagine the costs associated with a special needs child unless you were living it. Astronomical is an understatement. As with everything I'm just taking it a day at a time - sometimes a minute at a time.


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

Wednesday, May 2, 2012

SSI Popularity

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We are so popular with SSI we got not one but two overpayment demands in less than a week... and four notices total if you count Noah's revised monthly amount (or unrevised amount) and a request for me to report now by phone rather than fax as I was previously asked. I challenged how they could calculate his monthly amount not having recent pay stubs for household income, and after we submitted them for re-calcuation they came up with the exact same figure! And they can't seem to figure out if they want me to report income or not or if they do by fax or phone... or not. Truly amazing. The second overpayment request is over $200. A little less sticker shock value than the $1077 figure but nonetheless continues to leave us scratching our heads at it all. Chris and I wonder if we're just getting everyone's overpayments in the county.... just mail them to Noah's parents they are used to it... I joke now but one never knows!

On the great news front, due to the overwhelming love from friends and our community we only have $1,516.04 left to raise for Noah's service dog! Never in our wildest dreams did we ever think we'd come this far so fast. Prayers do move mountains. Really it leaves you without words - we could never properly express what everyone's love, support and kindness means. We are simply beyond excited that Noah will soon be able to have his very own service dog.

Noah has his hippotherapy evaluation this week, we are praying it goes well and that the program will be a great fit for him, we're trying to figure out how to financially pay for all this therapies, and likely be forced to discontinue some in order to pick this one up. We simply can't financially balance it all. I wish we could - there is nothing more than wanting to provide Noah with every opportunity we can at recovering his gross and fine motor skills. Most of Noah's therapies aren't covered by insurance and the type of Medicaid Noah is on does not provide him with opportunities like hippotherapy or music therapy for instance. There are so many things we dream of being able to do for Noah like dolphin therapy, lite gait therapy, going to California for ABM, or even taking him to a handicapped accessible park like Morgan's Wonderland so he can just be a kid and experience the world like other children his age can. Dreams for Noah are bank breaking. But we never give up hope and we never stop reaching for the sky when it comes to helping our sweet Noah, he continues to make inch-stones each day, and we know that with lots of love, help and time Noah will do amazing things in life. God never breaks his promises, we know that, and we know he made those December Rainbow Promises to Noah the day he was born - miracles will happen.


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