We're still here! We made it through the storm just fine! We really lucked out and didn't lose power. So many around us are out and will continue to be out for days. Losing power for days here would have meant most likely looking for elsewhere to stay since Lucy's pump requires regular charging. I need to put some sort of alternate power source on our shopping list for preparedness!

Lucy is doing pretty well. Shes been in a great mood and seems to have a lot more energy with the increase in feeds. Shes still struggling GI-wise with a lot of reflux ("pukies in my mouth"), bloating, and today her stomach starting making this horrendous rumbling noise. But with her mood being so good, its hard to complain right now!

At the moment we've started back up with school and joined in on some new homeschooler clubs/classes at a local center. We are busy with Lego Club, TaeKwonDo, Book Club, and soon preschool crafts and ballet! Life is just...normal right now and I will take it!

Thank you for checking in on us. Please keep our friends and family without power right now in your thoughts and prayers, including our fellow tubey friends M and R who have always helped us out so much. They are still out of power and have had to leave and stay with family.

Prepared!

We are getting ourselves ready for the big storm! Its been busy around here and I haven't had time to post anything, so I am sorry for the lack of updates.

If we lose power for days on end, things will be hard but we DO have an outlet that can be used to charge Lucy's pump in our van. I certainly hope the storm turns away and we aren't hit that hard, but nonetheless we have a backup plan in mind!

Stay safe, family and friends! We love you! I will update when I can!

Yay!!

Yay! The pump arrived!! Lucy loves it!

Update

Lucy is doing REALLY well! We are at 55cc's and I can already see her energy levels perking up. She hasn't slept during the day much more than a catnap for several days now(opposed to her usual 2-3 hour nap she started taking after her g-tube placement). I am so hoping this trend continues!

We took the kids to the county fair this weekend. They loved looking at all the farm animals! Lucy was in heaven petting every creature that came her way! We even bumped into a blog reader who recognized Lu and wanted to say "hi". Its a small world!!

Thank you for checking on Lu! Whenever her new pump finally arrives I will post up some pics of her modeling it!

Here and gone in a flash!

Lucy's new pump came......aaaand went.
We got it, set it up in its new, even smaller, backpack. Lucy ran around, so happy. After wearing it for a while she said, "Mommy, this pump doesn't hurt my back!" Which made me feel all the worse for not switching sooner.

However, the joy was all short lived. The next day it died. Something was wrong with the charger or the battery and it was unable to charge up. So the pump had to be sent back to our DME after waiting two weeks to get it in the first place. It could take another 2 weeks to get a second pump. Ugh. What a real pain.

Otherwise, Lucy is doing pretty well. She is still having some intermittent stomach pain as well as some moderate reflux, but much better than last week. Her feed rate is up to 52 cc's an hour, which is a 10cc increase over before! Thats progress!

Update

Lucy is doing alright....still working out some of the kinks here.

The good news: Lucy's feed rate was up to 50cc's an hour by bedtime (thats a 8cc/hr increase)

The bad news: Lucy's reflux is HORRIBLE. It hasn't been this bad since she was an infant. Her stomach is also barely moving at all. Although this problem no longer affects her feedings since feedings are flowing into her small intestine, anytime she drinks water or eats ice the liquid just sits in her stomach until I eventually vent it out.

Hopefully this is just an adjustment process for her body. She seemed to feel pretty good all day as long as I kept on top of venting her stomach. Surprisingly, the fact that eating ice eventually would lead to stomach pain hasn't stopped her from indulging in her favorite snack. I'm just crossing my fingers that her stomach is taking its sweet time recovering from yesterday, and will be up and running again soon.

According to our home health care provider her new pump should arrive tomorrow! Yay!

Lucy's GJ placement went well today! We had a great group of doctors who made sure everything was as easy as possible for Lucy. The anethesiologist even gave her an added narcotic as she came out in recovery so that she could stay calm and relaxed (for once we didn't have the "feral cat effect" as she came out of anesthesia!).

After placement Lu struggled with some projectile vomiting, which continued after we got home in the afternoon despite a dose of IV Zofran before we left. But, because we have the GJ, I can still feed her through the J port and drain her stomach through the G port to keep her comfy!

We've started feeds up slowly and are giving Lucy extra time for her body to adjust to the new tube. Shes still been having quite a bit of stomach pain, but from what I understand this could all be in the normal range for some kids. Hopefully her body will adjust quickly so we can get right to work on raising her feed rate!

Thank you to everyone who kept Lucy in their thoughts and prayers! And thank you to all our family and friends who helped out!

Big Day

Tomorrow is Lucy's GJ tube placement! She'll be sedated for it but released to go home after the procedure. Hopefully everything goes well and we don't have any complications. Zach was not able to get off of work so I am going to have to go with Lucy by myself. We will be praying that this allows us to substantially increase her feeding rate. Things have GOT to improve in that department for Lu, we just can't continue on this course.

Thank you for your prayers and thoughts! I will update as soon as I can!

Whew! We had a busy weekend! A good kind of busy though!

Since Friday was Zachary's birthday I didn't want to post the update on Lucy's behavioral psych appointment that day.

Things actually went well and it became startlingly obvious that Lu has a hard time dealing with just about everything that goes into her health problems- from fear about upcoming procedures and doctors appointments, to anger and resentment for all her pain and food deprivation. The doctor also felt it was a good possibility that a lot of Lucy's issues may stem from the fact she is not getting the hydration or calories that she needs- leading her to steal food, which causes more pain and more irritability. So, hopefully, once the GJ tube is in and her feed rate can be increased, things will start to improve on their own.

The doctor turned out to be very understanding and has a history of working with GI patients at the hospital. I was initially concerned that the whole idea of training Lucy to ignore pain wasn't the best thing for her. The doctor agreed that it may not be the best idea to solely take that route with her treatment. Lucy already has a hard time expressing herself without being angry, so a middle ground will have to be reached.

So, we are scheduled to go back in two weeks. Hopefully, all this will lead to some positive results for Lucy.

Lucy's GJ placement is set up for Wednesday morning, bright and early. I will update again soon!