Some people measure the closeness of Spring by a groundhog seeing its shadow, some predict Spring's arrival with a flock of robins in their yards, we however predict Spring in our house by a change in Noah's sleeping pattern. And according to Noah Spring is very close. Noah has had some really great therapy sessions this past week, he's working hard and doing things I never thought I'd see him do. Even his vocalizations are starting to change and every so often I can swear I hear a familiar word.
I finally won the war with SSI and Medicaid after nearly thirty days of calling daily, correspondence and ultimately at the end getting more firm and loud than usually suits my typical demeanor. I never did get one return call back after my many messages - not even from a supervisor. Not one courtesy call back at all in thirty days of leaving messages. They should change their voice message to say "we will never return your call" from "we will return your call within two business days." As a former government employee I find this type of customer service completely unacceptable. The very least you can do is return someone's phone call. I finally got a hold of a gentleman on the phone and refused to let him hang up, or transfer me to someone else and demanded since no one else would help me that he was going to. He reluctantly did, confirmed that the last letter ever sent to us was a SSI denial, and that no paperwork had been sent reinstating Noah's benefits, I told him that was unacceptable, and that I needed something in writing that day that expressed Noah's reinstatement of benefits. I think I scared him a bit and played every power card I could think of straight down to I onced worked for a Judge and quit pulling my leg with crap and produce results. Sometimes you just have to get firm, as being overly nice gets you put off. To say the least by the end of the day I had a fax in hand confirming Noah's reinstatement of SSI and Medicaid.
I am sure that the SSI and Medicaid problems will likely appear in the future again, I am still not confident that Noah's amount is accurate and believe they have likely set us up for additional overpayment problems. Yet they now tell me they no longer want me reporting Chris' income monthly like they asked me to do previously. It's like dealing with a Bi-Polar agency. So it sounds like we'll be dealing with a new audit a year from now. And really the idea of a year of not having to deal with this hassle and worry about Noah's benefits seems rather a relieving idea.
After a few days of working out travel and courier arrangements with a vendor, Noah was finally able to trial the chill-out-chair. It is so nice to get him off the ground in a chair that is safe for him to lounge in - especially now that Luke is trying to literally walk all over him. Noah seems to enjoy his time in the chair, and I am genuinely glad we had the opportunity to try it. I hope one day we might be able to find a way to get him one. It really is a nice piece of furniture for a child like Noah that would last many years. I expressed a big interest to the vendor and he sent me a quote of $2,528 including shipping and handling. That's enough to make one fall over. Really you would think somehow I could get used to seeing big sticker prices for anything Noah needs, but my jaw continues to drop every time.
Noah seems to be working very hard on his arms and hand coordination. His new favorite activity is to take out the DVD's on the lower half of the rack. He empties the entire lower level, and I put them all back and we do this all day long. Often times he gets quite mad at me when I put them back, as I think he feels he spent all that effort getting them all out only for me to put them back on him. I am rather pleased though that he seems to be enjoying himself and that he puts so much focus on the task. Noah works so had and is so proud of the things he can find a way to do. Hopefully that inner drive he has will fuel him to do so many more amazing things in life.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.