I am the worst blog owner ever...

aren't I? I haven't even posted a "Happy Thanksgiving"!! What is wrong with me?
We have just been super busy and not with anything too terribly interesting. The usual- selling a house, fixing up another, homeschooling, and trying to feed a 2 year old small amounts of formula on a constant basis.
We had a great Thanksgiving, we always enjoy spending time with our families. Zach and I enjoy(okay its more like we passionately LOVE) the food but its hard when your kids just can't join in. The older they get the harder these events seem to become. Either way, Zac and Lu still had a great time with grandparents and all their Aunties. Whenever I get up the energy to deal with my frustrating camera I will post up some pics of the kids in their cute Turkey Day wear.
The kids are both still on the rebound from an episode of croup last week. I had to usher Lu off to the pediatrician this morning because she was insistent that her ear was killing her. Dr B says the ear looks fine but it maybe had some fluid that I cleared out when I put some Hydrogen Peroxide in there.
We decided since we were already there to FINALLY do Lu's weight check. She came in at 24.8 lbs, which is nothing to be happy about. At the time of her scope- in which she was "cleaned out" and had been starved for some 40 hours- she came in at 24 even, so 24.8 likely means she hasn't really gained any weight. This was exactly the reason I hadn't felt like hauling her into the doctors office on the other side of the city in the middle of flu season. At least its done for now. We will go back in a few more weeks to check again and then we visit the GI for a follow up in January to decide about a g-tube.
That's about all there is to update on. I feel like I am juggling entirely too much at the moment. I know in a few months it will all be over and we will be SO happy, but I am definitely praying daily for peace. If anybody could send some good real estate vibes our way or if anyone happens to know someone looking to buy a FABULOUS house in my area send them our way! It would definitely relieve some of my stress! Haha!

Results

So I just got the call from Lucy's GI, Dr G, about her biopsy and blood work results.
First, her labs showed that she was pretty anemic and needs to take an iron to supplement. This is the first time that's ever come up and as a matter of fact back in July she was not anemic. I had a feeling this was an issue though because her face is very pale and she bruises pretty easily. We are going to have to hunt for a supplement that is elemental, like her formula, which may prove to be a challenge.
Second, her biopsies did not show elevated eosinophils which means that her body IS NOT reacting to her formula!!! HUGE sigh of relief! This means no modular nutrition necessary! Yay!
However, her biopsies did reveal that her intestines are healing from something. He said possibly a virus that hung around way too long and ravaged her system, or a bacteria or something that shouldn't be there but there is no way to know for sure because the biopsies didn't reveal that anything was actually there- just that her intestines were trying to heal from whatever it was.
We discussed Lucy's feedings and where we were at quantity wise. Her weigh in at the hospital was just 24 lbs even, which is very poor. Lucy is still struggling to hold onto a solid 20 ounces per day without feeling sick after eating. Its very hard to stay on an all liquid diet and pack in the quantity necessary to grow and thrive- its the reason MANY kids on an elemental diet end up with a G-tube.
The plan for now is to return to our pediatrician every couple of weeks for a weight/length check to see if Lucy will begin to pick back up once her intestines fully recover. In January we will meet with Dr G again and if her weight remains poor we will put in a G-tube to supplement her feedings at night with a slow feed. Dr G said this is a very common practice and not something to be afraid of- sort of an expected path for a kiddo like Lu.
For now I am pleased we are keeping our Neocate, relieved not to have to go modular, nervous about Lucy's weight, and eager to get her happy and comfortable again no matter what it takes- G-tube or not.
Thank you all for so faithfully checking in for Lucy's results!!! We appreciate all the love and support!

Update

At the risk of jinxing our progress I am going to say it out loud. Lucy is doing SO WELL!!! She is having a stellar few days in a row. Shes chatty and energetic again. She hasnt spent ANY time at all in my lap whining her belly hurts and has been consistantly sleeping through the night! Yaaaaaay!! It has been so nice! I have been able to actually move about the house without her following behind me, begging to be carried. This is a huge change from the last few months!

Update

Lucy seems to be getting right back in the saddle. Yesterday she did much much better. Normal appetite, normal behavior. Good news! Now we just wait for our biopsy results, which will hopefully be entirely normal.

Update

Lucy is hanging in there. She is a trooper that is for sure.
She started off this morning with more blood than what was considered acceptable in her diaper. The hospital called to check in on her and when I told them what was going on they wanted the GI fellow on call paged. I decided to wait things out since our doc is not on call and is off. It didn't look to be anything terribly serious and I didn't want to call in the cavalry, put Lu through more hell and have it all turn out to be nothing. The bleeding thankfully seems to have stopped.
Lucy wasn't terribly interested in formula today, she requested "snow" more than anything. Generally she was upbeat for most of the day, but kept having episodes of pain. We were out and about this afternoon and had to come rushing home because Lu just HAD to get out of the car because she was feeling so bad. By dinnertime she was happy and bouncing around again though.
I am hoping tomorrow is dramatically better for Lu.

Home Safe!

We are home!
I want to say thank you to EVERYONE that prayed, sent good thoughts for Lu, and just in general had concern for Lucy this morning!!!

The scope prep for Lucy was horrible. I wont even go into the details, but suffice to say she simply didn't handle the process well at all. Watching her endure Thursday was heartbreaking. Shes quite a wonder woman!

The scope went well and was free of complications, we are so thankful! The OR was running about an hour behind so we spent quite a bit of time down at the hospital this morning and didn't get home until 5. By the time Lu was taken in for the procedure she had been without formula since Wednesday evening! She was not happy and running out of patience for the procedure to start.

Dr G said that he spotted a section of her intestines that was inflamed and hes not exactly sure what it means. He took multiple biopsies from various areas and doesn't want to make any decisions about our next move until we get the results back. They also took a lot of blood to look for any nutritional deficiencies or other indicators of a big problem. Dr G is not expecting to see results until the end of this week.

Lucy weighed in with another weight loss and after factoring the expected loss from her scope prep, this means that Lucy hasn't begun to regain weight from her recent loss. Hopefully that will start to change sometime soon, it is one of the issues that concerns me the most.

We are still working on bouncing back. When Lucy came out of the OR and was alert we offered her some very watered down formula. She appeared to do just fine with it, but after we were discharged she vomited it all back up projectile style(which was over an hour and half after she ate). Shes still not eating and is now asleep on the couch. After nearly two days with no formula I would expect her to have a voracious appetite. Hopefully she will rest and then feel like eating something.

I will update again tomorrow with her progress! Thank you all for reading!!

Aquarium and Gearing up for Friday

Lucy's scope is on Friday and we are getting prepared. I just returned from CVS, where I purchased an economy sized bottle of Mirilax, extra absorbency diapers, and a Mounds bar. Needless to say, I will be busy tomorrow so there will be no time to post before Lucy's scopes. We are hoping things look good so that the only thing we lose out on are lollipops, and not formula. I will post once we are home and settled.

We went to the aquarium on Monday. Grandma Daisy got us passes and we paid her a visit while she was working! Pics below:


Zachary waiting for the dolphin show to start:



The escalator goes up:



They had a new jellyfish exhibit and it was amazing:

Crocodile, silently staring at us:

Big Zach and the kids in a forced pose picture:

Lucy starting at fish that was about as big as her:

Big Zach holding Lu face to face with the crocadile to mock him:

More nature than we expected to see that afternoon:

Birds in the amazon:

Lucy giving me a fake smile:

HUGE sea turtle:

Zachary with the bubbles:

Fire boat out on the bay:

Waterfall:

Happy Halloween!

Zachary the scary skeleton:



Lucy the gorgeous fairy princess:



Together(and smiling!):


We made handprint spider T-shirts: