Update

I am mentally preparing myself for Lucy's upcoming formula trial. Its absolutely the biggest thing on my mind right now. I am hoping to start by the beginning of next week. I have plenty of 1+ to last me should she fail on Elecare. I will be able to go back to 1+, hopefully get her recovered quickly, and then move onto another elemental formula- whether or not I have enough to get her recovered if we fail the next elemental after that, I don't know.
In short, I am very very nervous. We trialed all these formulas when Lucy was a little over age 1 and it was a disaster. It was a brutal few months for her and everyone else while we weeded through all our options. So why are we doing this again? Because we are out of options. There aren't any other complete nutritional options left so we need to retrial to be certain they are out(crossing our fingers that they aren't). If they are indeed still out then options for nutrition become complicated. It is entirely possible that she will tolerate one of them, though. Her body may have matured enough over the last three years to handle the other more "high-test" formulas. The only way to find out is to try.
I bumped Lucy's rate up to 44cc's and since we are in the first few days, its been a struggle. It seems like whenever we bump up a cc it takes a few days for Lucy's stomach to handle the difference. Hopefully in a few days she won't notice the difference anymore.
As always, thank you for checking in on Lucy!

Christmas Day Photos!

Lucy's Billy the Exterminator shirt, hes her favorite guy:


Lu and Zac each got new electric toothbrushes, the first ones they've ever had, and it had to be one of their most favorite gifts:




And of course a Pillow Pet for each kiddo:

Merry Christmas!

Its Christmas Eve and I think we are just about ready! We are hosting both breakfast and dinner here, and we are so excited! Nothing makes a house feel like a home, but celebrating your first Christmas there.

The kids got in on the holiday spirit and helped decorate the house for the big day tomorrow. We created a few of our own decorations this year though! Which included hand and foot reindeer and angel place markers for the table. It was fun! Each day this week we worked on a different craft and the kids were super proud of themselves. We'll definitely do it again next year. The links above lead to a great site for super easy kids crafts and printables.

The presents are wrapped and under the tree and I am exhausted! I can't wait to see everyone open their gifts!

I hope everyone has a great Christmas!

*There's an update from Lucy's doctor below if you missed it earlier.

Update

I got a call back from Lucy's GI yesterday. I was totally surprised to hear from him, thinking he had forgotten us before the holidays.
I updated him with where we have gotten on the feeding pump. So far we are at 43cc's an hour and 26 cal concentration. She is having some chronic pain- mostly her neck, stomach, head, and back- but its brief and doesn't seem to slow her down. We discussed continuing to move her up just 1 cc every 4 or 5 days so that we could get those extra calories in and maybe if we are lucky, to allow Lucy some time off the pump in a day. This might be a little overly optimistic but I don't see the harm in trying.
Dr. G would like to hold off on the GJ tube for now. His major concern here is that getting a GJ tube would mean submitting to anesthesia at least 3 times a year. The GJ has to be replaced every few months and it must be placed under sedation. Dr. G is concerned that anytime Lucy goes under anesthesia there is a such a large risk of complication as well as major setbacks in her overall GI function. I can completely see the point he is making here. It was a concern of mine as well after watching Lu struggle so badly after her last sedation. Right now the G tube is giving her just about what she requires so we may have a few more months to a year before a GJ tube is an absolute necessity (barring anymore unforeseen crises that lead to further setbacks for her).
Additionally, I let Dr. G in on the news that our medical equipment supplier was able to give us an additional shipment of the Neocate 1+ that was scheduled to be discontinued December 15th. This is great because it gives us so much more time to trial out a new formula. So, at the beginning of the new year we will begin trialing Elecare in the hopes she will do just fine with it. If not, we will have more of the 1+ here to go back to while we sort out where to go next.
Thank you so much for checking in on Lu! I will update later with a post for Christmas! I hope everyone is enjoying the season!! We love you all!

The Story of Stuart Little

This is also known as "There's a Mouse in My Kitchen And I Am Going Insane".
As the air has gotten colder and "mouse season" began I noticed a few sparse droppings here and there on my kitchen counters. I quickly gagged and sterilized, then set out one enclosed safety trap baited with mouse crack(peanut butter). I was looking for a quick, clean, and deadly end for the mouse. Surely a buffet in heaven is a much better place than my kitchen.
I went to bed trusting that by morning my rodent issue would be gone. Boy was I wrong. This is no ordinary mouse, oh no. Hes a highly intelligent super monster from hell who has no interest in meeting his Heavenly Father.
The next morning there wasn't a mouse in the trap, and now there were droppings in my dish drainer. So I again sterilized the kitchen, and set to repositioning my trap and adding an additional one. The next day he pooped right next to one of my traps! All like "Yeah, I will pass on that one."
My husband considerately went out and purchased about 10 sticky traps, thinking there was no need to spill rodent guts in our kitchen. I mean, who wants that? Whats worse than mouse guts on your counter-tops? Oh I know, its mouse droppings! Apparently my husband was wrong about not needing snap traps because this mouse can hover in the air. Despite nearly carpeting my kitchen counters in sticky traps, this creature still managed to get to my dish drainer.
After that I tried the old reliable trick of sprinkling moth balls around the exterior of the house to ward off rodents, but I think the only thing that did was give him an incentive to NOT exit the building.
My husband is theorizing that the sticky pads just aren't sticky enough. So today I ran to Home Depot with the kids and picked up about $40 worth of mouse elimination artillery. I WILL have this mouse.

The time flies....

How on Earth did my baby go from this:



To this:

So very quickly?

Happy Birthday, Lucy!

Lucy's birthday was Saturday. She is FOUR years old now! I can't believe it. Shes just not a baby anymore. She keeps telling me "Don't call me young lady! I am a big girl now!" She totally believes shes old enough to be a grown up at this point.
Saturday was also our 8th anniversary! It was a busy busy weekend!!
I will post a better update later! I realized I hadn't updated since last weekend!
Thanks for checking in!

The New Norm

Things here are....fine. We are still sitting at 42cc's an hour. Now that we've begun to establish Lucy's stable pattern, I will track down her GI and fill him in on where we are at. Hopefully, I can speak with him this week.

I say "things are fine" but when I say that I don't mean things have returned to normal, it's rather, they have established a new normal. Overall, Lucy's functioning isn't what it was before the surgery and at this point I doubt seriously that she will get there again. She's not worsening and, although she has improved somewhat since surgery, shes not the same as before.

But for what its worth, Lucy has adjusted well and, for the most part, most people really wouldn't know she has a problem. When she feels good she runs, jumps, plays as hard as she can and when she isn't feeling great she stops to lay down and nap or watch a movie. For her, its as simple as that.

In other news, Zach and I got our first night out since Lucy's tube placement! We wanted to get out and celebrate our upcoming anniversary, Christmas shop for family and friends, and go see the latest Harry Potter movie. Thanks to my sister, we were able to go out and have a great time! We still have WAY too much shopping left to do though!

We also took the kids up to a Christmas tree shop this week. They have dozens and dozens of trees on display, all lit up and decorated. There must be thousands of ornaments and decorations to buy. We toured the shop and let the kids each pick out one new ornament. Zachary got a tiny nutcracker (he loves those things!) and Lu picked out a fake strand of popcorn (of course!). About 35 minutes into it Lu got tired with a headache and wanted to go home. She let Daddy carry her and hung on a little longer so we could finish up. The kids really enjoyed it and love showing off their ornaments when company comes over. This is definitely going to be a yearly tradition for our family!

Christmas time is here!

We got the tree up and decorated this weekend! Christmas is so much fun with the kids now. Both of them are finally at an age where they "get" the hub bub and the magic. They really enjoyed decorating and hanging ornaments on the tree.
Lucy is doing pretty well. She's up to 42cc's an hour but I may have to pull back. I am watching her cautiously and waiting. She keeps complaining her belly hurts, but its nothing that seems to hold her back. Shes finally at a rate that is getting her more than what she was getting before the tube, so that is an improvement.
We're also battling some granulation tissue around her tube site(basically is extra tissue that grows around the site in an attempt to heal). When we saw Dr G a few weeks ago he burned it with some zinc oxide and prescribed a steroid cream for her but it still just keeps coming back!
Lucy continues to do well with not stealing food. I think by offering her a reward I replaced the "loss" of food with the "gain" of a prize.
As always, thank you for checking in on Lucy!

Update Again

Things are going pretty well! I have Lucy all the way up to 40 cc's an hour at 26 cal/oz! This is still no where near where we need to be, but its progress. I think we are getting close to her limit, just given some of the signs I am seeing, but I will move her up again tomorrow in order to get as far as I can.

Lucy continued to find ways to steal food even after we installed the baby gate. Shes a persistent one and it leaves me pulling my hair out. I decided, after talking (okay, venting) out my frustrations with Lucy's food thievery to a friend, to change my tactic from negative reinforcement to positive. I have offered Lucy a reward of a sticker for each day she goes without stealing food and when she reaches a certain number of stickers she can pick a prize from the dollar bins at Target. This is working so far! She has a pleasant attitude and is trying hard to resist the temptation to steal. Yay!