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.

Long Day at Children's

Well, yesterday was an exhausting day at Children's Hospital, but luckily, W was very pleasant even though he missed out on his normal naps. We had to two appointments in one day and we stopped along the interstate on our way back home to meet his nutritionist for some free samples of nutritional supplements. 


First, at 9:30am, W needed to complete a hearing test. This was a very interesting ordeal since babies cannot talk to say when they hear a sound. They first had to "trick" Wade to turn his head when a sound went off by lighting up a box with a moving toy in it. Our smart cookie kept anticipating the box to light up and he looked over at the boxes without a sound going off. Needless to say, his test results showed a lot of "false positives". Anyway, W can hear, but he could definitely hear better if fluid wasn't in his ears all the time.


After the hearing test, we saw the ENT doctor. This visit was seriously the most "to-the-point" visit I've ever encountered with W. She came in and said, "Well, I see that Wade has had several ear infections lately. Can I take a look in his ears?" After confirming that he still has fluid in his ears, she continues to say, "Well, I think he's a great candidate for tubes. When would you like to schedule his surgery?" So, five minutes later, surgery is scheduled and we're on our way. Quick and easy!


After grabbing a bite to eat in the hospital cafeteria, we headed up to the Hematology/Oncology clinic. We were supposed to just see a nurse for W to receive his first shot of Neupogen, but we were able to sneak in a visit with the doctor. She was very talkative with us and we discussed several issues, such as testing me and Adam for genetic confirmation, fighting insurance for coverage, submitting paperwork to the SCN Registry and the SDS Registry, and the pros/cons of an elective bone marrow transplant before cancerous cells are even found. After talking for a while, he finally received his first dose of Neupogen. We had to stay there for an hour to make sure he didn't develop a reaction to it. We waited, no reaction, and after 5 hours spent at Children's, we were finally able to head home! We had one tired puppy who fell asleep in the parking garage...

Who is this Boy?

So...Wade has been on enzymes for two weeks now and I think I'm seeing some positive effects of the treatment:

• Active Play: Wade has been dancing, moving, throwing and banging toys and just plain excited to play! He "talks" while he plays and screams with excitement. He is definitely exploring and I've noticed him sticking his tongue out when he's "thinking" and figuring something out.
• Appetite: He has been sucking down bottles lately. Enough to where I've started making 6 oz bottles instead of 5oz every 2-3 hours. He's also been eating more solid food, instead of throwing it and playing with it.
• Development: In the last couple of days, Wade began taking his first couple of steps. We're all really excited to see him walk.

Watching him change into this excited, energetic, and happy boy makes me so PROUD and BLESSED!