I guess I jinxed it

I should have known. The second I call it "great" things would spiral downhill. Why does it always work that way?

Lucy up and took a turn in the opposite direction literally minutes after I posted last. She has been up ALL night the last few nights, crying and moaning. The last two days she hasn't moved from the bed and rarely smiles. She says her head hurts, her neck hurts, and when she eats, her belly hurts. I took her off the pump last night hoping this morning would be better once she had gotten a break, but nope. I put her back on the pump late this morning to get caught up on her calories, but after running it for a few hours she threw pretty much all of it back up. She started to perk up after that so I am hopeful tomorrow will be better.

As a matter of fact, let me jinx this in the other direction- Tomorrow won't be better. There, that should set things right.

You know your brother talks too much...

Zachary talks A LOT. Like all the time. And he really doesn't care if his audience is interested in listening or not. Maybe its just a part of his personality, maybe its part of his Autism Spectrum Disorder, I'm not sure. Its just a part of his quirky little personality. He follows everyone around the house yammering on and on and on and doesn't even notice when the person he's talking to hasn't responded in 20 minutes. We've tried to explain the concept of paying attention to your audience to ensure they are interested in the topic of conversation, but it just seems to go out the window when hes got something he wants to say. Sometimes we just have to laugh about it because it can be quite comical.

Lucy, on the other hand, grows tired of hearing about Legos, Star Wars, and all things boy. After all, she's three and an impatient 3 year old at that so the amount of time she's actually willing to listen to it all isn't nearly as long as Zachary would like. She's tried being polite, with the simple "Please stop talking." but he keeps going. Shes tried coming up with excuses like "I have to go to the bathroom." but he just follows and talks through the door. Shes also tried getting nasty with "SHUT UUUUUUUP Nooooow!" but that results in a lecture from Mommy about speaking respectfully. So recently, shes figured it out. The perfect solution.

She simply pretends to have fallen asleep. No matter what she is doing, she simply drops with her eyes closed and pretends to have completely gone dead to the world. And this works. Zachary instantly goes "Awww, Mom! She fell asleep! I didn't get to finish my story!" and then runs off somewhere else. Lucy opens her eyes with a devilish grin and goes right back to playing- enjoying her quiet.

If you're looking for an update on Lu- She's great. Really, you'd never know this kiddo had surgery a week ago! I've had to slow her down to keep her from hurting herself!

Update

Lucy is doing GREAT! I am actually having a hard time getting her to slow down and rest!

On Monday she was really sore and had a hard time moving around, but insisted on doing it all by herself. She would take 20 mins to get on the toilet if she had to, so long as she could do it by herself. She refused to take any pain medication (but hahaha, now Mommy can just stick it in her tube!) and asking to go to the park all day.

Today, she was running around and climbing and jumping- scaring the heck out of Mommy! There is absolutely no stopping this girl that is for sure! You'd never have guessed today that she had surgery just a few days ago.

We're Home!

It feels so good to be home! The hospital is no place for rest that's for sure!

The surgery went extremely well. Things went in without a problem and the only issue the doctor had was that Lucy's esophagus was fragile and bled easily. We really lucked out and the head of the department ended up doing the surgery and taking charge of Lucy's care for the first 2 days we were there. You just can't get better treatment than that!

After surgery things took a downhill turn. Lucy came out of surgery highly agitated, which can be normal, but after that her vitals starting looking pretty bad. After we were admitted and taken to our room, Lucy continued to get worse- her O2 levels were in the 70's, her heart rate was high, respirations were high, and she had a rising fever.

She looked awful and I had a moment where I was ready to break down out of fear that I had made the wrong choices for Lucy. Watching her deteriorate was frightening and I wondered if I had made a huge mistake by submitting to the surgery. Doctors and nurses continued to come in and out and were really concerned that something was very wrong. They said that if she got any worse or if she failed to show marked improvement by morning that things would be considered pretty serious. They debated back and forth about whether or not to get additional tests up and running throughout the afternoon. She ended up on oxygen and needed 3 boluses of IV fluids before she finally even urinated. She felt awful and was terrified.

By around nightfall she had stabilized and by midnight she was on 50% room air, by morning she was off the oxygen. It was quite a wild ride! I have never felt such a relief in my life to see her come off of that oxygen.

After that the next couple days were filled with meetings with the GI team, nutritionist, and trying to figure out a correct feeding schedule in order to fit in enough liquids and calories. The overall concern was hydration. Lucy is chronically dehydrated and its been slowly wearing her down, but at the end of the day her stomach can only handle so much volume at one time which makes it very hard to fit it all in. We attempted a larger bolus feeding of 7oz but that ended up making Lucy sick so we had to limit her to a max of 5oz at a time.

Now that we are home we are still working on what works best to meet her feeding goals. Its kinda like having a newborn baby again- I feel clumsy, awkward, and unorganized. I know it will get easier with each day though. Most of all I can't wait to see her sunken eyes disappear and her rosy fat cheeks reappear!

Lucy is doing pretty well. She was up walking around today and by evening has been insistent that she do almost everything without help. Shes stubborn and its working in her favor right now! She even got up and went across the street to show our neighbor her costume for Halloween!

Thank you all for the messages of love and support!! We could truly feel all the prayers! There is no way we could have made it through this week without our family and friends.

One Day to Go!

We've got just one day to go before Lucy's g-tube placement! I am soooo stressed about it! I've had a tension headache for 2 days now that just will not quit! I am ready for it to be Friday so that the procedure will be over and Lucy will be resting in my arms again.

I have done everything I can to prepare her and myself for the surgery but at this point there is nothing left to do but wait.........and when I have to wait I just over think the heck out of the everything and drive myself insane!

I had been feeling pretty numb about the whole thing until the sudden realization hit that Lucy's belly will never ever be perfect again. I know that sounds crazy and I don't want to sound overly dramatic about things. But a 3 year old's tummy is just so soft, round and cute. Every parent blows countless raspberries on their kiddo's tummy to hear their squeals of laughter- but, for Lu, that perfect belly will be no more. Its frightening to think that in just another day she will be swollen, red, and sore around a new hole in her belly. I am dreading the first moment that both her and I see it. I dread having to see her afraid and upset when she sees her "new" stomach. I dread knowing that such a traumatic event is in Lucy's very near future.

At the moment, Lucy actually seems to be looking forward to it, excited to be able to "eat" in her sleep. I'm sure once we are in the hospital she will change her tune though. I went to the store and bought several prizes to reward her with as soon as we are back in our hospital room after the surgery. I figured I had better be prepared!

I am going to spend the time we have left before the surgery remembering that every state is only temporary. Thursday will be an extremely difficult day for Lucy, but by this time next week Lu will be up and smiling again here at home.

Preparing

A couple of years ago I made friends with a woman, M, that I had met in a support group for children with no foods. We had both been members of the group for a while before we realized that not only were we from the same town, but that we lived right down the street from one another! I remember thinking "Wow! What an incredibly small world!" We are used to being so very out of the ordinary where ever we go and to think all that time a fellow no food kiddo could have been standing in the checkout line next to us at the grocery store.

Her and I arranged to meet up, and chat in order to share our experiences over dinner and vent our frustrations a little. We've been doing this for a couple years I think now and its always a wonderful break. Talking with another mom that has all the same worries and day to day stresses that we do is something neither M or I get to do often.

M's daughter, R, is nearly 7 now and Lucy seems to always end up falling in R's footsteps. I joke with M that our friendship is so one sided since Lucy goes through much of what R does, but a few years behind. I end up learning from all of R and M's journeys and its been incredibly helpful.

R got her g-tube a while back and so the second I knew we would be getting one I made arrangements with M to stop in for a "tubey playdate". Lu played with R and got to see what the actual button and tube would look like, see that R was a perfectly happy, normal girl, and I got to hang out with M and learn all about the technical side of things. I feel 1000 times more reassured having gotten a hands on tutorial from an experienced tube feeding parent.

But what is most reassuring is to see R. She is a happy seemingly normal little girl, chattering endlessly about Zhu Zhu pets, playing with dolls, feeding her pet rabbit, riding scooters on the sidewalk. The fact she is no foods, often sick and in pain, and on a 24 hour a day feeding pump seems of no matter to her. Sure, she certainly has bad days- but when she has good ones they are filled with playdates and happiness, not sulking and crying because her life has so many challenges. On a day to day basis she doesn't dwell on the unfairness, feel sorry for herself, or get angry with everyone else for having food. She just keeps moving forward, enjoying everything she can.

This is the future I hope for Lu.

Zach's Birthday

Yesterday was Big Zach's birthday. Hes......old, okay not really, but hes older than me! He's being forced into celebrating his birthday. Is it like a man thing to say "No really, its no big deal, I am not interested in having fun with my family and friends to celebrate the day."? Seriously. So my sister sat with the kids so we could enjoy one of our 5 date nights a year and then we have some family get togethers planned.

I am definitely a lucky woman. I got to marry my absolute best friend in the world. There really is no one that he or I would rather spend all our time with. And I know every couple says that, blah blah blah, but it really is true. We always joke that we could never get divorced and remarried because we'd still want to hang out all the time and there's no way our new spouses would ever put up with that. We've had our ups and downs in our marriage, been through some real tough times that many marriages end over, but at the end of the day we are always best friends and that is the glue that holds us together when life refuses to cut us a break.

I am lucky enough to have a guy that can make me laugh til I pee my pants (yep, and then he laughed at me til he almost wet HIS pants) and then hold me in comfort when life seems unbearable. For every area it feels like we've been short changed in the luck department, its been made up for in having my hubby.

Happy Birthday, Babe!

* and for the record, the peeing in the pants thing is not a regular thing. Its only happened once.... and I was pregnant.

Apple Picking

We took the kids apple picking yesterday and collected enough apples to make a ton of homemade apple sauce. I have no idea what we will do with a ton of apple sauce, but hey its from scratch and now the house smells good! Zachary was careful to only select the best of the best, while Lucy went for sheer volume. Its the first time we've ever been and it was a lot of fun!

Tubey Time!

Major changes are up ahead for Lucy and I thought it was about time I posted an update. Lucy could certainly use all the thoughts and prayers you can offer.

We've spent the last year going back and forth between Lucy's various doctors trying to determine if its the right time to put in a feeding tube. Her weight has gone up and down and up and down, and then we've seen it stabilize. Her stomach just can't tolerate a large volume of formula which makes it difficult to get in the 40 +/- ounces a day that she technically should be getting. But at any rate, in the spring it seemed that Lucy had settled into her "new" growth curve and that, though her formula intake was low, it was just enough to keep her growing and going.

However, as the summer went on Lucy really started showing some signs of struggle. She was slowing down, having a hard time keeping up with the pace of other children her age, unable to tolerate the summer heat, complaining of headaches, and waking in the middle of the night screaming about leg pain. Shes pale, anemic, and has dark circles around her eyes.

Our GI specialist was concerned that these are all red flags for a Mitochondrial Disease and sent us on to a Geneticist. The Geneticist was appalled that Lucy did not yet have a feeding tube and was sustaining weight on such a small amount of formula. She felt that the bulk of Lucy's "mito-like" issues were really due to the fact her body just wasn't getting enough nourishment. She adamantly recommended that we immediately get a tube. She was so insistant about it that she even paged our GI on the spot.

So its off to the OR for a feeding tube we will go! The tube will go directly to Lucy's stomach and enable us to pump formula into her belly all night long at a nice slow rate. This will keep Lucy comfortable, hydrated, and give her all the calories she needs. At this point, its a relief. I spend my day constantly keeping track of how much she's had, when she can eat again, and trying to make sure shes getting as much as she can without over doing it. Our day quickly becomes ALL about the formula. And that is not a good quality of life, that's not a healthy normalcy.

Of course, I am scared for her and I am devastated she will be in pain for some time after the surgery. Its a pretty major surgery that will change her life. We have done our best to remain tube free, holding out hope that she would one day get food. Looking at the long term, however, its what is best for Lu. There is no projection Lucy will even trial foods within the next year or two, which leaves us stuck with a formula-only diet for some time. The decision to get a tube doesn't come easy at all but I want to see Lucy healthy, happy, and thriving, despite the formula diet, and a tube is the only way to accomplish it at this point.

Surgery is set for Oct 28th and we will remain inpatient for a few days post op. I will post updates as much as I can!

Thank you for checking in on Lu!

Oh, hey there!

Oh yeaaaah, there is this blog of mine!

No, I didn't forget about my blog. I just haven't felt compelled to write much....and additionally I am trying to figure out what to do about my photo situation. So I come back to my blog, tail between my legs, totally photo-less. Right now my digital chip has about 500 photos on it(literally) and I am concerned about loading that many onto my laptop. So what I need to do is to get the chip developed, THEN take new pictures of the house and load them here.

Things at the new house are going well. For the first time in a very long long time the focus of our lives is not on money or health crises, but rather on mundane stuff like hosting dinners, trips to the park, and visiting family. Its been an awesome change. We are all settled in and it already feels like home here.

We continue to make repairs and upgrades in the house. Our main focus has been the backyard at the moment. When we got here there was a circle in the center of the yard where the pool used to be that was full of exotic weeds as tall as the kids. There was also a side garden that stretched about 12 feet x 4 feet that was a mixture of garbage, weeds, and miscellaneous junk. We ended up renting a dumpster that we completely filled with yard debris and trash, much to our neighbors' delight. We put down topsoil and then planted grass, which is finally beginning to sprout- its the most gorgeous grass I have ever seen and I cant wait for the kids to be able to run across it!

On the health front everyone is doing acceptably.

With the recent heat wave, Lucy's skin flared quite a bit but has already settled back down again. It reminded me that I needed to be mindful of my clothing selections for her summer wardrobe(materials need to be soft with no rough edges and somewhat loose so that they do not rub, and shoes are a whole other huge problem in themselves). Oh and potty training has come to a screeching halt. I am pretty sure this child will go to college pooping in her pants.

Zachary is very happy in the new house. We recently joined a new social group for children on the spectrum and he enjoys that a LOT. His stomach has been giving him big problems again. I am hopeful that the problems are from him possibly getting one of his allergens accidentally, but I cant be sure this is the case. I am worried that this is a new chronic problem and that he will have to see Lucy's GI in order to get better treatment. An appointment with Lucy's GI would involve a lot of tests and further diet restrictions so I have hesitated in the hopes his stomach will work things out.

We discovered the dog is gluten/casein intolerant. She fits in like a glove with this family doesn't she? So now she eats a super awesomely expensive dog food but the good news is that she has put on some weight and that she no longer stinks us out of the room with a serious case of flatulence. I just find it remarkable a dog with food allergies would find its way to our family!

So there you have it. A pretty general update. I am going to work on the photo situation. I have Easter pics of my gorgeous and perfectly coordinated children to share as well.

Thanks for checking in on us!