Saturday, December 24, 2011

Poop Chronicles: Elemental Formula Trial Results Day 1 and 2

Appointment Day: Xander drank one cup of chocolate formula for dinner after we got home from our appointment. He seemed less than impressed.

Day 1: Normally he would wake with a terrible diaper. This time it was different. Not completely normal but much different than what we were used to. He drank 4 cups of his formula today-- 2 Tropical and 2 Chocolate. This evening he had a dirty diaper that was NORMAL! I seriously had to check which son I was changing! Overall today, he wasn't doing his blood curdling scream. He used more words instead of screaming. He looks more relaxed and didn't fight me when I changed his diapers. He actually didn't even ask for food except for when he saw Solomon munching on a pretzel. Part of me wonders if he already realizes that food was hurting him. He only had 2 dirty diapers total today which is a marked difference from 3-7.

Day 2: When he woke up he was only wet. This is a marked change. He only drank 3 cups of his formula today, but I'm not supposed to worry because that is enough to maintain his weight. No blood curdling screaming. He did fuss quite a bit today but I think that is related to him not understanding what is going on. He sat at the table today and colored but he now refuses to sit in his chair. (We took the front bar and crotch bars off of the highchair to make it more like a toddler chair.) I guess he figures if he isn't eating he doesn't need that chair. Before all this though, he was starting to want to sit in the other chairs like his big sisters so maybe I'm reading too much into that. Only one dirty diaper today and not diarrhea. His tummy looks less bloated too. He did not ask to eat at all.

We are not asking him to sit at the table while everyone eats. In fact, I've been taking him in another room and allowing him to watch Handy Manny while he drinks his cup. Making him sit at the table while others eat just seems cruel. By the time Handy Manny is over the children are usually done eating, so he goes to play and I eat my dinner in another room away from him. Again, we are struggling with a lack of normalcy. Mealtimes in the past have been our reconnection times. We used to all sit together and talk about our days.

The formula smells very nasty and is doing a number on my morning/all day sickness. We are going to buy a mixing pitcher and have Brandon mix it at night so that I can just pour cups.

We have a few prayer requests:

1. Neocate Junior costs about $35 a can. That lasts almost two days when he doesn't take the four cups every day. Quick math says that it will be at least $525 a month. This is more than we budget for groceries, or our van payment. Seriously, OUCH! Our doctor is working on having our insurance cover it. Other families have warned us that because he is taking it by mouth, not by tube, that they may reject the claim. We are praying for the claim to go through without a hitch. Our insurance has pleasantly surprised us in the past. We are hoping for that to be the case here too. In the meantime, our doctor gave us samples while she is trying to process our insurance.

2. Xander's MRI appointment has been moved up a little. He was the third case on Tuesday the 27th and one cancelled so we have to be there at 8 am instead of 9. I'll be by myself since Brandon is in training for his new company. Please pray for us. I don't tend to do too well waiting, even when Brandon is with me. I've been warned he may be back for up to an hour. Also a friend of ours is keeping the other three. Please pray that they are well behaved and mind their manners. Also pray I get to where I'm going on time and without getting lost. I'll be living in my van that day between taking Brandon to work, dropping the 3 off and then going across the river to Xander's procedure, then taking the discs to the doctor's office, then picking up the kids and then picking up Brandon.

3. Please pray that we are able to enjoy Christmas. I don't want all of this to eclipse the celebration of Jesus' birth. God is our strength and rock and if anything this trial should magnify Him, not minimize Him.

I pray you are enjoying your Christmas Eve with your family as well.



Rachael (IdaMom) said...

Thank you for taking time to update us on Christmas Eve. Let us know if insurance doesn't come through to pay for the formula.

Debbie said...

So glad to read this. I have been wondering exactly how he was doing and how you were proceding with feeding everyone except Xander. I think you have a good routine. Amazing that you have seen such a difference so fast. I will be praying for you on the 27th. Thanks for updating! (((hugs)))

Tracy - said...

My oldest was allergic to milk and soy and was on the Neocate infant formula as a baby. It came out to about $10 a day, but it was so worth it. He screamed in agony the first two months of his life, and the Neocate was a miracle. (Before we finally saw a gastroenterologist and discovered that his intestines were bleeding because he was allergic to milk and soy, we saw our pediatrician ten times. We finally ended up taking him to the ER one night and got into the GI doc immediately. If one more person told me it was just colic or asked, "Is this your first baby?" I was going to punch them in the throat.)

We were able to get a few cans from his doctors' offices, but I had the best luck on Ebay. I was VERY nervous about buying baby formula that way, but it always came in sealed cans, in sealed cases. We saved a LOT of money that way. Just makes sure that the auctions say that you are buying a sealed case and that they give the expiration date.

Good luck! I have my fingers crossed for you that insurance will cover it.

~Stephanie said...

Neocate Junior can't be sold on EBAY. Ebay recently changed their rules.

Previous to trying this, Xander was dairy, egg and soy free. It didn't help. :(

Tracy @ My Minivan Rocks! said...

That stinks about ebay. I just did a quick search and it looks like it's on Amazon and a couple of other sites. Hopefully you can find it somewhere!

~Stephanie said...

Finding it isn't really the issue...

Tracy - said...

Sorry, I meant find it *for less* somewhere. Hopefully your insurance comes through though. :)