Jan 11, 2012

Our Sick Boy, Updates and New Insurance Woes

Aloshua is having a rough week. He has been running a fever and dealing with an increase in secretions again. With a pseudomonas infection like his, this is pretty standard operating procedure when off of the antibiotics. He'll feel pretty good and have no problems for a few days, and then will run a fever and have a lot more "junk" in his lungs. This is why he's on the antibiotics long term. There is no cure for pseudomonas. Once you have the infection, you have it for good. The antibiotics prevent the infection from progressing (or becoming fatal), but they're taken in 28 day cycles so the patient does not build up a resistance, thus rendering the antibiotics ineffective.

Some days during the off cycle, he does great, others he does not. It's touch and go. He's still home with his family though, instead of in the hospital, and that is a great thing. You can't ask for much more than that.

We have a lot of fundraising updates for you today!

It's been another crazy few days here for Team Losh. We're in the midst of confirming details for the benefit concert and dinner for Aloshua, and things are quickly beginning to take shape.

Right now, we are looking at February 18th from 5pm to 8pm in Bald Knob, so save the date everyone! It will be a night of food, fun and music, all for a $5.00 donation to a very worthy little boy. You can't beat that, right? We will post confirmed dates, places, times, performers, and everything you will need to know as soon as we have everything cemented.

If you are interested in volunteering at the event, we would love to have you on board! We need several volunteers to help with set up, serving, clean up, and admissions, and you will be given a free Team Losh t-shirt as well as free admission to the event for your help. You can email us at teamlosh@gmail.com if you're interested in volunteering.

As far as totals go... you guys have donated over $2000.00 in cash and nearly $1000.00 in prizes! We are working on getting all of the new raffle prizes posted to the blog. 

Submissions from authors have been pouring in and the compilation is beginning to take shape. we are so excited to get it out to all of you. We have had some really phenomenal submissions, and think you will all enjoy the tales authors have donated to the compilation. Remember, all you have to do is donate $5.00 to Team Losh before February 15th to get the compilation (and a raffle entry).

You can donate at:

* First Community Bank in Bald Knob, Arkansas (the account has been established in Courtney Schulist's name since she is Aloshua's caregiver)
*On the Give Forward fundraiser page at: http://giveforward.org/teamlosh
*To teamlosh@gmail.com via PayPal
*Or you can send a check or money order to: Team Losh, P.O. Box 982, Bald Knob, AR, 72010. 

Like you, those of us working behind the scenes at Team Losh are committed to his needs. We're keeping track of every donation received as well as donor information when provided. To ensure that the funds go to his medical expenses, we've ensured that Aloshua's mom, Courtney, is the only one with access to PayPal, the P.O Box, the bank account, or that can be sent funds via Give Forward. So rest assured, if you donate, your donation will go directly to his mom for his expenses.

Aloshua's mom has had several meetings this week in regard to insurance woes. There has been a bit of good news from several organizations that advocate for patients like Aloshua with insurance providers. As we've learned intimately, it truly can be a one step forward and two steps back process though.

After meeting with the Spinal Cord Commission yesterday about Aloshua's needs, Courtney received a phone call from Aloshua's supply company informing her that insurance has repeatedly denied to pay for the supplemental nutrition he receives via G-Tube and he will no longer receive them. It was an unexpected and disheartening decision, to say the least.

Aloshua has a severe case of failure to thrive and is below the 5th percentile for boys his age. This means that over 95% of boys his age weigh more than he does. Because he cannot maintain or gain weight naturally because of his medical problems, he requires additional nutrition to ensure that he does not lose weight.

The average adult needs only 1,500 to 2,000 calories a day. Aloshua typically takes in anywhere from 3,500 to 4,500 calories a day, depending on how well he eats on his own. 2,500 of those calories come from supplemental nutrition provided via G-Tube feedings. Now, most of us would gain weight rapidly were we to consume that many calories a day. Aloshua does not. On good days, the most we hope for at those intake levels is that he maintains his current weight of 33 pounds.

So, Aloshua's mom and medical team has another insurance battle to fight. In the meantime, they're trying to decide on an alternative source of nutrition so he does not have any setbacks while the decision is appealed. It's a frustrating process, but we have high hopes that the next rounds of appeals will be successful, at least on the nutrition front, and we can resume the Scandi-Shake supplements as soon as possible.

Thank you again to everyone who is helping us ensure that Aloshua has access to the treatment interventions he needs to thrive. Your commitment to Aloshua and children like him who cannot advocate for themselves is a true blessing.

All our best, 
Your Team Losh Captains

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