Services for Little Guy

Yesterday was a 6-month review for Wade's IFSP (Individualized Family Service Plan) with Missouri First Steps. We all met at our house and I was surprised that everyone showed up! We discussed how Wade met his goals written in his previous plan and we updated the plan to include new goals, such as correcting alignment with walking/standing, saying simple words, using common signs, gaining strength in his core, eating a variety of foods, and keeping up with a high-calorie diet in order to grow. We increased services and added a new one, so now Wade has the following services:

• Speech Therapy--once a week for 60 minutes
• Occupational Therapy--once a week for 60 minutes
• Physical Therapy--once a week for 60 minutes
• Nutritional Consultation--once a week for 30 minutes

I'm going to be busy keeping up with all of his therapy appointments, but luckily the sessions take place in the home. 

Also, I called the intake coordinator today at the Sikeston Regional Office (Division of Developmental Disabilities) and Wade automatically can receive services because he's already in the First Steps Program. The Sikeston Regional Office sets me up with a caseworker to be able to find resources, fill out applications/paperwork for various services/programs, and get other services for Wade that First Steps doesn't offer. He'll receive this until he's five years old! 

Neupogen is Working!

After one complete week of being on Neupogen, we did a CBC yesterday to see where he was on his counts. His ANC was 1165--a record high! We are so happy!

Discovering Resources!

This seems to be my full time job lately--finding resources for funding for expensive medications and the nutritional supplements that are considered over the counter. Our insurance company considers Pediasure Peptide and AquADEKs vitamins as "over the counter" and therefore are not paid for. I've been trying to find resources to be able to help us out since Pediasure Peptide is $166 for a case of 24 and Wade needs to drink 2-3 a day. 


I'm submitting paperwork to Abbott Laboratories to hopefully have them assist me with the price of Pediasure Peptide since our insurance denies coverage. Hopefully they will be kind enough to provide us with product or at the very least a partial reimbursement!


I've also found a great program to receive some freebies just for needing to be on pancreatic enzymes. Zenpep, a brand of enzymes, offers a program called Live2Thrive, in which anyone with a Zenpep prescription can receive free enzymes until age 2 (then after that age, a $50 voucher for each refill), free ADEK vitamins once a month, and your selection of free nutritional drinks (Scandishake, Scandical, or Carnation Instant Breakfast) once a month. Wade was on Creon, a brand that only offers freebies for Cystic Fibrosis patients. But after finding out about the Zenpep program, we're switching brand names and now we'll be getting his enzymes for free until he's two years old and free one-month supplies of vitamins and high-calorie shakes! This program is Awesome!


Earlier this week, Wade started his Neupogen shots and he needs them three times a week. The original specialty pharmacy, Coram, that the doctor called the prescription in at told me that EACH shot would cost $279.73. This was going to go towards his deductible, rather than paying a prescription copay. After having a week supply (3 shots) delivered to us, I questioned why this price was so high. So, I called our insurance and basically found out that Coram isn't their "preferred" specialty lab. So I asked who was and wanted a quote from them to compare the costs. They put me in touch with Accredo and I spent about 45 minutes on the phone with them to find out that a 28-day supply of Neupogen would cost........are you ready?.......$40 total. So, needless to say, we're switching pharmacies to Accredo. For a 28 day supply, I could have paid $3356.76 with Coram, but now I'll be paying $40 for a 28 day supply!! I was frustrated that I spent so much time on the phone and on hold, but this call was definitely worth it!!


And, I received a call yesterday from the Severe Chronic Neutropenia Registry to let me know that they received some of the paperwork for W. She asked for the rest of the paperwork from his doctor and then they could begin registering him into the registry. Remember, this is the registry that provides Neupogen for FREE once we're signed up, which may take about a month or so.