Tuesday, February 23, 2010

Ups and downs

Asa had OT today. He played in flour, corn starch and cornmill! Sounds fun right?! He liked it too. Until Jim added water! The horror! No, he really wasn't that bad but he didn't want to touch the paste! And what a mess....glad we got to leave and Mr. Jim had to clean up! LOL I know Cade and Gracie will love to play cook with Asa!

Then we went to get the WIC. Not usually a fun appt. and today ended up being no different! Things went better than expected at first. We were gonna get out in record time. Then I checked the vouchers. They didn't include Asa's Pedisure. I really could care less about the cereal and milk and juice. We NEED the Pedisure! The sad thing is that Asa was on the pump during the whole appt. We discussed at length the tube feeds.

In the end, we were there for 2 hours. Asa was fed and then got sick. He had on his Theratog suit and it is warm so I took off his shirt as soon as we got in. When I had to wait on them to figure out the Pedisure stuff, I stripped him down to his diaper. He never threw up and I didn't drain him but he gagged and gagged and then zonked out. I hate seeing him get so drained and depleted!

It took 2 hours, 2 clerks, 2 dietitians but we finally got his Pedisure. Turns out the "system" won't let them print over 10 vouchers. Asa gets 12 for 3 months worth of stuff. I asked them to just give us the Pedisure and forget the rest but the system or them wouldn't let that happen. They can only give out 3 months worth because their "population" tends to lose more than that. GREAT!

You might wonder why I'd dare bash a system that I utilize. First, I'm not bashing those wonderful workers. I'm sure they wanted to throw up their hands and give up but they kept on working. At one point the clerk was going to override it on her own because she couldn't find anyone to authorize it but she knew we needed the Pedisure. So those ladies got huge "thank you" from me! Second, this is what I have to do in order for Asa to gain weight, grow and stay healthy. He has to be tube fed. We are actually fortunate that Asa can have Pedisure. At least we can find that on the shelves when the WIC runs out. But the home health provider won't deliver it with his other tube supplies because we qualify for WIC. So every 3 months we go through this routine. Every 6 months we have to bring a boat load of paperwork with us and Asa goes through the ringer with the nurse. Every 6 months I have to get a new RX from the GI saying Asa needs Pedisure. All of this just to get the food to feed Asa. Then there is the fun stuff of the tube!! Next time you drive through McDonald's and throw a Happy Meal at your kid, say a prayer of thanksgiving!!! And that is my third point. Just be so thankful when feeding your kids is simple. When it doesn't involve hoops and red tape! I took that for granted before! No more!!

And on another frustrating note, Asa's Nexium got denied. The insurance is making him take a 2 week wean to see if he needs it. This is a good idea but we just tried it, on our own, a few weeks ago and it didn't go so well. So now he has no reflux meds on board. I noticed some him flinching and burping earlier today. Then tonight he was hurting before bed. Maybe I could make some calls and get this overridden but I was a little busy today! I'm just gonna try to ride it out and who knows, maybe our trial was hampered by something else. Maybe he really doesn't need the med.

But our day did end on a fun note! We went to IHOP for supper. They had free pancakes and only asked for a donation for Children's Miracle Network. The pancakes were yummy. It was very, very crowded but Asa was happy. As long as he was happy we could handle the rest!! Asa even ate some yogurt while we had our pancakes! YAY!!! If that would keep up, I could kiss that WIC and tube good-bye!

1 comment:

Christina said...

You should just get your case transferred to Chester Co. and Asa could come hang out in my quiet, albeit, messy, little office while you get your vouchers and I could kiss all over him!!! Haha!