Pick and Draw

I bought the kids this fantastic card game for Christmas, called Pick and Draw. Since there isn't much that holds the attention of my children, and this game does, I thought it was worth blogging about!
Basically each person gets a sheet of paper, a pencil and one card from each category- face, eyes, hair, nose, and mouth. After the cards are dealt out, players flip them over and draw a face using the features depicted on the cards. Its easy, there's no winner, no loser, and anybody can play. Directions included encourage children to embrace God's gift of creativity, as well as some scripture-based advice.
My kids ask to play EVERYDAY. And they will play for as long as I allow. They come up with some of the cutest/strangest/coolest faces. This is definitely one of our most used Christmas toys!

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!

Update

Things are just....eh. We are still struggling to get her feed rate up. Shes been having issues with constantly going #2 and its difficult for me to tell if this is a problem caused by the feed rate, a general malfunctioning of her GI tract since shes been on a downward spiral, or her stealing food from the kitchen. I just can't tell right now. I would love to call our doctor and let him know how we are progressing with feedings but I really don't have an answer for him!

So to nip one of the three possibilities in the bud, I went up to Babies R Us today and bought an extra tall baby gate to block off the kitchen. Lucy was NOT pleased with the addition! Of course, neither are we, but at this point we've done as much as we can to lock up the food and she still finds a way to get food- even if it means digging in the garbage. I have a real concern she could eat something dangerous and its best to just lock off the kitchen entirely. Shes a persistent little girl!

That's about all I have for now! Thank you for checking in on Lucy!

Zachary's Belt Test Photos

Yep, he broke a board with his foot!-

Sparring-

And broke a board with his heel!-

Happy Thanksgiving!

Caught red handed

Me: Lucy, did you eat any of your orange play dough this morning?
Lucy: Oh, no, Mommy.
Me: *eyeballs fluorescent orange colored gastric juices sitting in g-tube* Are you sure? Is that the truth?
Lucy: *looks down at the obvious discoloration in g-tube* Ummmm, I think maybe I did. Yeah, that's the truth. I did, I eated it.

hahaha! She was totally busted!
Lucy is doing alright. We have been completely unable to make any headway with her feed rate at all. I tried over the weekend to get her up to 33 cc's an hour, but after 6 or 7 rounds of "the big D" I gave up. So for now, we sit comfortable at 30cc's while we wait for her GJ tube placement, which will hopefully allow us to move up her rate.

In family news, Zachary got his white belt in Tae Kwon Do last Friday! I have been meaning to upload pictures so I can show off. He was so nervous and has been working SO hard to achieve this, when he got it he just beamed. What a joy to see!! Zachary has low muscle tone and when we started TKD over the summer he could barely kick higher than a few inches off the ground without falling over. Going to TKD lessons weekly has really made a tremendous improvement in his muscle tone and given him so much confidence! I am so proud to see my little guy achieve his white belt!

Finally!!

Lucy's backpack is finally here!! When the FedEx man dropped it off everyone cheered, we were so happy to not have to lug that huge case around anymore!

We started trying to move up Lucy's rate and didn't get far. I tried 31 and at the end of the day she complained a few times that her belly hurt but I thought we could keep going. I tried 32ccs the next day and within an hour she was saying her neck hurt, her back hurt, her belly hurt, and her head hurt. She got REALLY irritable and I realized that we just couldn't keep going at that rate.

So I backed it down to 30ccs an hour and now we are diluting her formula down to 26 cal an ounce at 32 ccs an hour. So far its working VERY well. She's been running this way for a few hours now and so far no complaints!

We are praying we can continue to move her rate up enough to compensate for the diluted calories.

Thank you so much for checking in on Lu!! We appreciate all the prayers so much!

A Better Day

We had our appointment with Dr G this morning.

The X-Rays didn't reveal an obstruction of any kind, however they did show that her stomach isn't emptying well at all. It showed her stomach completely filled almost to the top, yet she was only on a feed rate of 1 ounce per hour, so in order for it to be so full she had to have been emptying pretty slow.

We spent much of the visit working through the math, trying to figure out exactly at what rate Lu would need to eat and exactly for how many hours a day in order to get in enough. Its impossible with her at a rate of just 30cc's an hour even if we go around the clock. So we are going to spend the next few days working to move her up just 1 cc a day in order to push her as far as we can. After that, we will probably need to water down her formula to a slightly lesser concentration so that her stomach will empty it out faster.

Dr G also decided that we are going to put in a GJ tube so that we can completely bypass her stomach when needed. The GJ tube will look just like the one she has now, only it will have a second port that is connected to a "straw" that will lead to a lower part of her intestine. This plan is a great one so long as her lower intestines are working well. We will just have to cross our fingers in hopes that her intestines function well enough. The GJ tube will be placed in a little less than 3 months, once her current tube site has healed. If we rush the surgery we run the risk of royally messing up her brand new tube site. So for now we are stuck working with whatever her stomach will allow until the GJ can be placed.

As far as Lucy's formula situation goes, its just not a good thing. The only options left out there are ones that she had failed about 2 years ago before, so we will be stuck re trialing them to be certain they are still out. I don't even want to know what our options are after they are out. I will cross that bridge when we come to it. Fortunately we just got a reorder of our formula and we are going to give it a shot again right before its gone. Hopefully, we will have enough to get us past Christmas.

Lucy is alright. Shes doing well. We're still running 30cc's an hour 24 hours a day and this so far seems to be her max. Tomorrow I will move up 1 cc, regardless, and if its not successful we will begin diluting her formula down.

I am exhausted after this morning, so I am sorry if this update makes little sense! I need to go to bed early tonight.

Thanks for checking in on Lucy!!

Oh good, more bad news!

Why on earth does that saying have to go, "when it rains it pours" ??

So today, I got news that Nutricia(the company that makes Lucy's formula) has decided to discontinue Lucy's formula.

They aren't even offering a comparable substitute. The substitute they are offering is a formula Lucy tried at around age 1 and a half and failed miserably.

So, needless to say I am scared to death of what lies around the corner here. Clearly, Lucy's body is already not functioning well and putting her through a formula trial right now isn't a good idea. However, I don't see a way around that. Nutricia announced that it will be discontinued by December 15th, which doesn't leave us much time.

Something else to discuss at our appointment tomorrow morning!

After a full day off the pump, I started Lucy back up this morning and she's doing alright. Shes had multiple episodes of diarrhea, but shes not completely wiped out in bed crying. I will take this as a triumph for the day!

Our super mini backpack for Lucy's pump still hasn't come in yet, which is frustrating. Big Zach got on the phone today to try and ream out a manager at our medical equipment supplier in the hopes we'd get one sometime in 2010. It didn't work. Lucy drags around this gigantic bag begrudgingly but doesn't let it keep her from playing, that's for sure!

That's all for now! Hopefully after our appointment tomorrow we'll have some answers and some direction.

Thank you for checking in on Lu!

Update 11/13

We got x-rays of Lucy's abdomen yesterday. She cried through the whole thing. Her fear of doctors makes just about any exam or appointment full of anxiety and tears. I cringe every time I need to haul her in for anything anymore. I wish everything would stabilize so we can just relax the way the tube was supposed to help us to relax. Things just aren't getting better.

Unfortunately, despite my medical degree from Google, I am unable to read the x-rays and figure out if she has some sort of abnormality. We'll be stuck trying our hardest to deal with things until Tuesday morning when we see Dr G again.

Lucy does great as long as she doesn't have to eat- by tube or mouth. Her stomach just isn't emptying right and I usually get stuck trying to empty out her stomach in the mornings when shes been hooked up to the pump. This morning she went potty and it was clear she just isn't digesting right. She keeps crying that her back hurts and she gags when she eats.

I feel horrible. She feels horrible. I am so sad to see my Lucy crying so much and so unhappy. I try my hardest to not be that "crazy hysterical mom" and be calm, but right now that's a struggle. Things were supposed to be so much better by now. She was supposed to be gaining weight and running me ragged with all of her new found energy.

Sorry this update is depressing and drama filled. I guess I am just tired. I caught a cold this week and with all this uncertainty looming overhead its getting the best of me. The two theories Dr G gave us about why Lucy is having such a hard time were not good- we're facing either an obstruction or a shut down of Lucy's stomach- neither are good news. I am still holding out hope that she can turn this around and things will normalize.

Hopefully my next update will be a lot more upbeat, with good news about Lucy's progress, I hope I hope!

As always, thank you for checking in on Lu!!

Update 2

Things still aren't progressing at an impressive rate for Lucy. Last night I noticed her belly was swollen and her belly button was actually stretched and purple around it. I thought maybe she had gotten constipated because ever since the surgery Lucy's entire digestive tract has slowed to a crawl. I got things moving well today, however her stomach remained "strange" looking. I took her off of feeds for a while to give her gut a break, but she remained unchanged.

I decided to try and see if she had a lot of gas building up in there, so I vented her and out came a LOT of old formula even though it had been quite a while since she had last eaten.

I decided to call our GI, Dr G, just to see if I had a reason to be concerned here.

He called me back pretty quickly and was concerned. Hes ordered an x-ray just to make sure there she doesn't have an obstruction, but he doesn't think she has one. Dr G is really concerned that Lucy's stomach has slowed to such a point. He had some ideas up his sleeve about where to go next, including placing a G-J tube in the very near future.

First, we need to get the x-ray and then visit Dr G on Tuesday to discuss things fully.

Thank you for checking in on Lucy! Please pray that there isn't an obstruction!

Update

We seem to be on a better track since this weekend. I cut Lu off the pump for a while to give her stomach a break and when she was up and moving around I decided to start her back on slowly. It was hard watching her feel so sick over the weekend that she didn't want to play or even move.

Right now I have her on 30mL an hour pretty much around the clock. If I push her any harder she lays down and starts crying that she needs to throw up. I am going to slowly try again to move her rate up every few days in the hopes this will improve. Even if we run her 24 hours a day on the pump, at 30mL an hour she STILL isnt getting enough calories.

To make things more complicated is the fact that our medical equipment supplier was dragging their feet trying to get us a super mini backpack(an appropriately sized backpack for Lu to carry her pump around in) instead of the adult sized one. Lu is stuck lugging around a backpack that is nearly as tall as she is and its making it really hard for her to get around. I took it upon myself to order one from another supplier on my own, and pay out of pocket so that she can have one within the next week. I hope it arrives soon!

Thanks for checking in on Lucy!!

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!

hooray!

We made it, settlement is over! We closed on the house last night and although it was a tremendous relief, it was bittersweet.
We love that house and really wanted to have a positive experience with our buyer, but our buyer turned out to be someone with .....um....some neurotic issues. We started out the process being very flexible, offering up her some free furniture and my husband's sports fathead in the rec room. We gave her access to our house 4 separate times to show her family and friends, simply because we wanted to be generous. We would have wanted someone to treat us that way and we were pleased that our buyer seemed so very excited about the house- after all, we were when we first bought it nearly 5 years ago.
But after the home inspection things went downhill. She became pretty unreasonable (wanting to ask us to fix absurd cosmetic details that were barely noticeable even when her inspection was supposed to be for "informational purposes only" as she had agreed to). She had a horrible home inspector that was about as flaky as a pie crust to top things off and complicate things further. At that point I felt like a pirate was attempting a hostile takeover of my beloved home and it started to become an excruciating process trying to get things ready before closing.
All in all it was a miserable experience that I didn't handle well. I would love to say that after all this I learned to shine in a time of crisis, but I didn't. I completely lost my mind from about October until, well, this morning. As of today we officially start a new chapter in our life and I am excited about moving on.
Now, off to nag my husband to put up my curtain tie backs and pictures so that I can get some photos!

Patience dear friends

Pictures are coming! I swear it there are! Settlement on the old house got bumped up to this Wednesday so we have been busy trying to empty out that house and do any fix its needed (which basically means my picture hanging, curtain rod installing handyman/Big Zach is busy).

In other news I decided to take the plunge and start potty training Lu....finally. I have to tell you she looks sooooo cute in her little underpants. So far its going alright. The first day was easy peasy, not one accident. Day two brought 3 accidents and so far today shes done well but then again its only around 8 am. Lucy is a stubborn control freak so I am trying to be very relaxed and not push her because the whole project will end up down the drain if she senses I WANT her to use the potty so badly.

In my last post I forgot to share the extra good news and that is that Lucy has gained weight back up to 27lbs and is holding there. I decided to buy a medical scale to keep here at the house because the cost of the scale was less than what it was going to cost me in copays at the peds office to have her weighed every 2 weeks. Now I can just do it whenever I want!

Thanks for checking in on us!

Moved in

We are all moved in! We are settling into our new routine and trying to organize our new space. Moving is definitely not fun but it has been well worth it because the new house is beautiful. We have just a few more pictures to hang and items to put away before I take some photos to share.
Lucy is doing quite well. Our first night here it was not looking optimistic that she would willingly sleep in her new big girl bed. We had let her pick out her own bedding and put her old crib blanket on top of the bed thinking that she would feel excited about the transition, but she wasn't buying it. She cried and begged for us to take her home to her crib. I was concerned that it was going to be a long night. Surprisingly though, she slept right through the night in her bed! A very pleasant surprise.
Zachary, of course, loves his new room. Hes my easy going guy and just settles into where ever we are. He is enjoying the change(and the week break from homeschool I gave him so we can get unpacked).
Big Zach is enjoying his reduced commute time- down to just 10-15 mins from 45 mins at our old house.
And me? I LOVE my new kitchen. More cabinets than I can fill and loads of counter space overlooking the living room so I can watch the kids. What more can a mom ask for??
Pictures will come soon!

Moving Day!

Today is moving day! Yay! The big day is finally here!

Boy it has REALLY been a while.

Holy Geez! Where have I been? I cant believe its already February.
We have been so wrapped up in selling this house and prepping the new one that I just haven't given a moment to sitting down and writing in this blog. That's sad, because it really speaks volumes for how poorly I have handled all this stress. I would like to say that I endured this process with faith and trust that it was in God's hands and that He would see us through but unfortunately I have struggled every minute of everyday with all the uncertainty that clouds anything having to do with real estate.
We are nearing the finish line though and hopefully it will be a matter of days before our stressors have been greatly reduced.
So to catch everyone up to speed in an orderly fashion, a bulleted list:

• Our house is under contract for the exact amount we needed, no more no less, and its WONDERFUL
• Our home inspection is Wednesday and you will find me huddled in a corner in the fetal position until then
• Bill, my father in law, surprised us by putting in new floors for our new house which brought all the work we did full circle so that the place truly looks done up
• We are setting up to move this weekend- rain, sleet, SNOW or shine
• Lucy renamed the dog Houndzo and shes actually responding to it
• We are scheduled to close on our current house sometime in the first weeks of March
• Once we are moved and unpacked I will post up pictures, I know that especially the family is eager to see how far we have come with the house

So there you have it. Now everyone is on the same page and all caught up! I am eager to get back to regularly blogging once we are moved in and no longer hopping between two houses! Thanks so much for checking in on us. More updates to come!

Long overdue update

Yeah I have been gone awhile. I have spent 6 days a week at the new house working and just haven't felt the energy to post. We should be moving very very soon, the house is really starting to look great.

Lucy had her follow up appointment with the GI today. I will say right off the bat very little was accomplished in terms of solidifying a cause for Lucy's issues and deciding where to go from here. We decided to hold off on the g-tube since Lucy's linear(height) growth has remained on somewhat of a curve. We are going to continue with height and weight checks every 2 weeks in order to establish her NEW curve and then review the situation in 3 months.

At the moment Dr G thinks that Lucy has a "motility" problem- her stomach is just not emptying fast enough and its to a point that its causing a problem. Testing for a motility problem would involve yet another endoscopy and placement of a probe into her stomach, so for now we will hold out in the hopes that Lucy will not continue to deteriorate. If at the end of 3 months Lucy has failed to improve then we will consider testing and then probably place a GJ tube(tube that will pump formula below her stomach).

The big question on every one's mind is, what is causing this motility problem? Lucy's scope didn't reveal enough inflammation to have caused this issue, so Dr G suspects that this is simply the way her stomach functions. He brought up the possibility that Lucy could have a Mitochondrial Disorder. Dr G even considered getting Lucy started on the "mito cocktail" of supplements a child with a mitochondrial disorder would need, but safely assumed she would not be able to tolerate such treatment.

Towards the end of our visit we discussed the issues Lucy has been having with headaches. He was quite concerned about it because the anemia she deals with is not severe enough to cause these headaches. He was suggesting we see the new headache clinic at the hospital and have the neuro specialist there give his take on the possibility of a mito disorder and get the ball rolling towards diagnosis.

I am not exactly sure of how I feel about it all. Mitochondrial disorder can be a scary thing, its something that little is known about and can also be degenerative. Testing is long and arduous. I don't know if I am eager to pursue a diagnosis and all the testing it requires if its not something ALL of our doctors agree upon. So the first thing I am likely to do is speak to our pediatrician about it. Our pediatrician is usually right on target and very practical so I trust her words the most out of all our doctors.

As always, thank you for checking in on Lu. Bare with us during the move, once we are in and settled I promise to post more regularly!