Monday, December 31, 2012

Year in Review 2012

(And photo dump)...

2012 was good to us. We celebrate Addi & Blake's 1st birthday, our 5th Wedding Anniversary, Addison's Cleft Repair went well without any complications, Addi & Blake's Homecoming Anniversaries, Blake was discharged from Early Intervention (he's all caught up!), moved (again) into an awesome house in a different state, took a leap of faith and are successfully tube weaning Addison, got to spend lots of time with family and made the most of every moment together... WE SURVIVED AND THRIVED in 2012.

And probably the best part of all is that we will celebrate the new year with TWO healthy, amazing, smart, lovable children who will likely join us for snacks around 8:30 and will be in bed before the ball drops. And my equally awesome Godson who decided to spend NYE with is (I must be pretty cool to have have a 13 y/o who wants to still hang out with me, or maybe he just likes the babies lol). Oh and a visit from my Momma, Stepdad and Mom-mom too. Who knows we might even be passed out before midnight and that will be ok with me.

Here's to hoping that 2013 will hold just as much promise and joy. From our family to yours. :)

























Thursday, December 27, 2012

The truth about healthcare...

My rockstar tubie!

Nope this is not a political debate, this is simply the cold hard truth about "our" (aka this family of four's) healthcare.

When Addison and Blake were born, it did not take long for the healthcare bills to pile up. I am positive that by their 3rd week of life I got a EOB from the insurance company showing me what it cost for their first two weeks of life and what we would owe. I felt sick. For the doctors ALONE it was a few hundred THOUSAND, and then we'd have to pay a HUGE chunk of that. Would it be worth every single red penny they could drain from us... absolutely. But could we afford it? Absolutely not. We did not get pregnant thinking we'd have two preemies and large medical bills. There was no way to prepare for this. In total we spent 105 days in the NICU x 2 ... PLUS another 48 days for Addison (in which she underwent surgery). Can you imagine what that would cost?

I don't know how it came up in conversation with the hospital social worker but she referred me to the billing office who was able to help me with paper work for Medical Assistance. I didn't think we would qualify and I was ashamed. Ashamed that I was taking something from people who really needed it. I was in denial that we were one of those families who DID need it. I was mad that it even came to this. PISSED. And shocked when I got a call that we had been approved and they would be covering EVERYTHING that our primary insurance did not cover from the time they were born forward. Relieved because there was help. We weren't going to drown in medical expenses.

Because Addison and Blake were born below a certain birth weight, they automatically qualified for benefits. It had nothing to do with anything else. Simply a weight. We also later learned that in the State of Maryland, Addison would be qualified automatically until age 21 under "Rare Expensive Medical" because of her Cleft Palate. It would cover every surgery she may need for her Cleft Palate, and all of her feeding tube needs, etc... as long as we lived in Maryland. There are not many ( if any) other states that carry that specific program, so she no longer has that coverage.

Now, keep in mind the hubs works FULL TIME... a lot of time 80+ hours a week. He pays over $500 a month for medical benefits for his family, through his employer. Yes, I am grateful for that we have insurance. BUT... and this is a big one. We found out when we moved that.............HIS POLICY DOES NOT COVER ADDISON'S PEDIASURE, AND THAT THE AMOUNT WE'D PAY OOP after they pay for HER FEEDING TUBE SUPPLIES, is in short astronomical.

The representative at the insurance company informed me that according to his policy guidelines set forth by his employer, they do not deem it medically necessary. So the fact that up until we started tube weaning, her team of doctors deemed it medically necessary and made it very clear that there was only one thing that I could put through her feeding tube that would provide her with LIFE SUSTAINING NUTRITION, a certain formula, did not make a darn bit of difference. And it wasn't a matter of "we don't cover this, but we do cover this" it was plain and simple "WE DO NOT COVER ANY NUTRITIONAL FORMULA WHAT SO EVER, in accordance with the employer's provisions." And when I asked about an appeal, said that it was pretty straight forward and highly unlikely that it would be overturned.

So basically my husband busts his behind for this company day in and day out, pays a high premium for insurance and they won't cover "basic medical needs" for his daughter. But if Addison were back on Medical Assistance it would be covered in full. Something seem wrong with this picture? And let me tell you at $9.00 for a six pack of Pediasure (generic brand) that would only last 2 days... it adds up quickly. THIS IS THE SAME INSURANCE COMPANY THAT WILL NOT COVER BLOOD WORK FOR A RARE GENETIC DISORDER THAT THEY ARE TRYING TO RULE OUT FOR ADDISON BECAUSE THERE IS ONLY ONE LAB THAT CURRENTLY PERFORMS THE TEST.

Did you know that we are not alone? There are hundreds, thousands, of other families out there who are in this same situation. Someone in their family has a feeding tube and their private insurance will not cover the associated expenses. News flash the pump, the bags, syringes, replacement buttons...none of them benefit anyone if there is no "safe food" (aka formula or Pediasure) to put through them. And this isn't just an issue for feeding tube kids either. Kids with medically diagnosed weight gain issues (from prematurity, or other GI issues) need high calorie and pricey meal replacements daily to survive. Private insurance doesn't cover it for them either.

The silver lining in this is that we are moving away from tube feeding, but there are many families who cannot.  We are hopeful that in the coming days/weeks/months we will be transitioning to WCM (whole cows milk) and cutting out Pediasure all together, but reality is that we might have to keep one serving of Pediasure a day on board for awhile. One is better then three, and we'll do what we have to do. But I cannot bear to imagine the financial impact this would have had on our family if Addison were feeding tube dependent for a much longer period of time.

Why am I sharing this?

Because I think it's worth talking about and something that needs to be brought to the for front. It's the dirty little secret so to speak. This isn't the only flaw with our medical system either, but its one that hits home for us. And I am not pointing fingers either. I also do not claim to know the perfect solution. But I wanted my voice...Addison's voice, to be heard.





Wednesday, December 26, 2012

Product Rave & Feeding Update

Disclaimer: I have in no way been paid or compensated by the following companies for my views on their products. This is simply a non-paid review on items I have bought, used and love.

I think everyone has that "one" thing they cannot live without, that serves many purposes and can be used for a long period of time. I am am sure I have several... But tonight as I was feeding Addison her snack, I realized I one that is officially a "must have" for us.

This :


Sassy Crib and Floor Mirror

I got mine at Target when they were less then 6 months old. At the time we used it for tummy time, to give them a visual to distract them. We used it for tracking by moving it from side to side and letting them follow it with there eyes and head movement. Then for reaching and swatting at the lady bug and bee. They enjoyed it for many months as they learned to make facial expressions and entertaining themselves. And the most recent HUGE thing we've used it for... a feeding tool. You read that right. I use it with Addison to help her focus and distract her all at the same time. She is engaged with the baby in the mirror and I can encourage her "Show the Addison how you chew", "Show Addison how you drink". And she is proud to watch herself. If she refuses bites, I use it as a reward. "Tell Addison bye bye", "Take a bite and we'll see Addison".

And now here is your long awaited update. We are almost 2 months into this journey and a month and a week of that is tube feeding free. Knock on wood, for the most part, I have not seen any major regression which can be common. I do notice she has a day here or there were she isn't as interested in eating, but I can usually find a way to encourage her and have still get her to eat. On those days it also seems like she drinks a lot more which is ok, especially because on those days I give her more Pediasure to help compensate for those calories that she isn't eating. Overall her liquid intake is sky rocketing, we celebrated this by buying her big girl cups and firmly committing to straws. She now has cups just like Blake, except in pink and purple and butterflies. Yes I am excited about frilly cups, do not judge me lol, I've waited a long time for a really "sippy" cup for this kid. 

We started with a "Honey Bear" training cup... 

Honey Bear Straw Trainer Cup


(and then tried every other one imaginable), settled on a water bottle (open mouth top) and then I noticed that she was getting good lip closer and making sucking noises so we tried the Playtex Straw Trainer Cup 

Playtex Straw Trainer Cup


which we happened to have left over from Blake (and I may or may not have bought a pink and purple in those too). And are now settled on the Playtex Insulated Straw Cups 

Playtex Insulated Straw Cup




Playtex Straw Cups



These ones I like them for at home and/or on days when I feel like I've got to really watch how much she is taking in. The insulated ones are great for on the go because it keeps things cold longer, which is a must for Addison.

I have also been encouraging both Addison and Blake to fill their cups with water (from the fridge door dispenser), I've found that it makes them feel "grown up" and also makes them want to drink more water because they think they are getting away with something. 

My biggest struggle with Addison right now, is the fact that a lot of her meals are not at the dinning room table. I had set out to be a strict enforcer of all meals at the table, and we did great right up until we started really hardcore weaning her. Then it became a battle. I got better results if she were curled up with me on the couch watching cartoons, or if I was doing some crazy stunt like singing or playing with said mirror, and now even if she is sitting at their new picnic table they got for Christmas. I hadn't given it much thought to "why" this was a problem until I mentioned it to her OT. Then it clicked. She could be associating her high chair with a negative experience (that experience being the grueling feeding sessions that yielded little results while her feeding pump ran, and may have felt like we were trying to force feed or over feed her, or just the fact that that is where ALL her tube feedings happened). For some kids it's no big deal but for a "feeding issue" kid every.little.thing. makes a difference.

When she told me that I admit I felt bad that I hadn't considered it before that, but I vowed that I'd try her booster chair instead and see if that worked and have now made it "our" goal that we will have one meal at the dinning room table every day and the rest I will allow her and Blake to eat at the picnic table. Once we have this eating thing really under control and we aren't so focused on weight, I'll worry about moving them back into the kitchen. I will say that I am very grateful that Blake is so adaptable with this whole thing and doesn't seem phased by relocation of meals, I cannot imagine battling two of them every day (but at this point most days I don't even feel like I am battling one anymore GASP).

So for now our main goals for Addison are: 1.) Gain weight and have G-tube removed. 2.) Eat one meal a day in her big girl booster at the dinning room table. 


Tuesday, December 25, 2012

Happy Birthday Daddy...

To the greatest man I ever knew...
Merry Christmas & Happy Birthday. Only the best of the best can share a birthday with Jesus. I wish you were still here, on Earth, but I know it's best that you are in heaven. Where you know no pain. Where you can watch over us and keep us safe. I feel you around us everyday. I see you in the twinkle in Addison and Blake's eyes.

I love you Daddy.

Monday, December 24, 2012

Holidays Apart

As you gather with your family and friends to celebrate Christmas, remember that their are many who cannot do the same.

Our military stationed miles and oceans apart.

The tiny baby inside an incubator in the NICU. Those celebrating their 1st (for some even their 2nd) and/or their very last Christmas in the hospital.

Those who won't get to celebrate this year because they've gone home to heaven. The moms & dads who's arms and hearts are aching for the loved one they've had to say goodbye to too soon. The children (no matter how old) who's parents have gone before them.


It's the side of the holidays nobody wants to think about. But for everyone of us who complains or dreads their annoying Aunt Sally, who squeezes their cheeks, etc. there is someone out there who wishes they could trade places with you for just a moment. To be caught in the craziness that happens this time of year.

So please dear friends, I ask of you, take one moment of your day to pray for those who need it most. To my own near and dear friends and family, know that my family and I are thinking of you and praying. May you have just a little bit of peace and a glimmer of hope this holiday season.

To our military who have given up their holidays with their family so I can safely have time with mine. To those in other service industries (doctors,nurses,police AND even those providing "luxuries" to those in "need" aka "keeping the world warm") it's a thankless job sometimes but THANK YOU from the very bottom of my heart for doing what you do.

May each and everyone of our followers have a happy, memorable and safe Christmas.

Happy Birthday to Jesus!

Sunday, December 23, 2012

Two years ago...

12/23/2010 I was sitting in the high risk OB office due to some abnormal test results. That morning and the two days before were filled with worry. Our fears were erased that day and we had no idea what would unfold a month later.

That day was one of the happiest days of my life. We found out that day that "Thing 1 & Thing 2" were a GIRL and a BOY. I was overcome with joy and emotions. .

Just look how far we've come...

We spent the day celebrating Merry Christmas with our closest family. And Addison and Blake were once again spoiled. We'll likely be spending the next few days after Christmas and Santa's visit purging toys and saying goodbye to itty bitty "baby" toys, so we have room for all the awesome toddler stuff.

Thank you to all who helped us celebrate. I'd be lying if said my heart wasn't just a little heavy wishing my dad were here, but I am sure he is smiling down. And I am thankful for all the family I got to have near.



















Friday, December 21, 2012

Friday Fun

We had a busy/not so busy day.

First off, every morning we get up and have breakfast and then the fun begins. They are so fascinated by my camera phone, especially the self portrait mode. Addison specifically loves making all kinds of funny faces and such. Today they both wanted in on the fun.

I had some things I needed to do today, that may or may not have actually gotten done. Then we hit the grocery store. This was after dinner. When Addison had ate and ate until I was sure she'd pop. And as you can see she must have still been hungry. She fought like the devil to get food out of the cart and yelled ORGURRRRR over and over. And then I ran the cart into a whole display of Nutragrain bars and cause a huge mess. That I had to clean up, while Jake watched. Sigh.

Lastly we came home and I hoped they would go right to bed. No such luck. They are so excited about seeing BOTH of their grandparents that they were wide a awake at 10pm... The late nap probably did not help either. Finally we got them in bed at 10:30 and yes at 1:33am I am still awake. Don't ask.

What did you do today?







Thursday, December 20, 2012

Thankful Thursday...

I am thankful for the little girl sitting next to me eating her waffles and drinking her "milk" from her sippy cup. Thankful for the little boy who says "I wub you Momma" and says "No touch sissy. Back up" and moves his sister from harms way.

And thankful for one more day...









Tuesday, December 18, 2012

Yup... That just happened

Sharing a snack and some water when Blake burps and before I can say ANYTHING at all he giggles and says "Piggy Wiggy".

All boy I tell ya... All boy.


Monday, December 17, 2012

Mommy & Me Monday

NEW Feature- because mommy often finds herself behind the camera. :)

For fun, I also included some of our other great photos :)















Sunday, December 16, 2012

Sunday Fun-day...

It's that time of the week again... yeah you know, the time everything in your house stops, the tv goes from Disney to football and you can pretty much bet that your husband will be completely "checked-out" and useless for the next several hours. When yelling at the tv seems perfectly acceptable while the children nap or stare at their father thinking "you fool those guys can't here you... or can they?"

Rather then fighting the power, only to be disappointed, I'll give in this time and just sit right here on the couch and RELAX. Life as we know it can resume once again when the game is over... and as a result I'll either have a happy husband or a grump to deal with. Only time will tell......

How are you spending your Sunday?

Saturday, December 15, 2012

Santa Comes to Town...

First and most important.......

ADDISON HAS BEEN TUBE FEEDING FREE FOR 30 DAYS!

30 days ago I tube fed my budding toddler through her feeding tube for the very last time. Today I did a weight check and she is weighing 22.2 lbs, which is steady from a week ago. Which is also a huge accomplishment because as I mentioned, weight loss is typical with tube weaning and they won't take her tube out until she gains weight for 3 months in a row. So holding steady is actually on the right track. I am hoping that this means the weight loss is over and that we will be in the gain column soon.

To celebrate I thought "We should have cake, minus the icing because apparently my kids are allergic to cake icing." (Poor kids.) One of my preemie mom buddies suggested I let Addison and Blake help me bake a cake. And I really am thankful she suggested it because I would have thought about it later and wished that I had. But at any rate. Let me preface this with, I don't bake often, aka I do not have much on hand to bake from scratch or at a moments notice. That's ok with me though, because I am sure a box cake would be better then anything I could make, I tried that once so believe me...box cake is better. This meant a trip to the store. No biggie. I figured I could go after their nap, pick up the mix and such, come home and let them help me bake and hoped that by the time I was done Jake would be home from work to join in on the celebration.

I had talked with Jake during nap time and he indicated that he thought he wouldn't be to late, so I thought I'd check in after nap time and decide either to wait for him to get home and then run out to the store or just go before he got home and get started. After nap time he said he wouldn't be much longer, that he had just gotten to his last job. So I waited. And waited. TWO HOURS LATER, he tells me it's gonna be a while longer. (Plus an hour (+) commute home).

At this point I had found a recipe for some "butter cookies" and had everything it needed (butter, flour, baking powder, eggs, honey) so I had started that BUT the dough had to sit for a few hours in the fridge. I figured, we'll have cookies instead and play it by ear, if he gets home "soon" I'll run out. Otherwise it was time to start dinner and well...yeah. No going out at this point.

Jake finally got home. He wanted to take the dogs out for a walk first, and change his clothes and blah blah, normal "just got home from work" stuff. FINE.. I'll keep waiting. He finally comes back inside, and I head out. I am not gone TEN MINUTES... DO YOU HEAR ME TEN STINKING MINUTES... I have been home ALL DAY LONG with the kiddos... ALL.DAY.LONG. And Jake calls. What could he possibly want? I bet we are out of milk or something. Ohhhhhh no. He is excited. "What Jake, what?" I ask.

I am standing in the store, deciding on cake mix... WHAT DOES HE WANT.

Jake: "OMG... SANTA JUST CAME TO THE HOUSE."

Me: "What?"

Jake: "Santa. He just came through with a parade of fire trucks and brought goody bags to the door for the babies. I heard him outside, they were beeping the horns and stuff. SANTA WAS HERE."

And it's official. I hate Jake. I leave for TEN MINUTES. And Santa comes. Jake didn't get a single picture (he claims he didn't have a chance to lol). Santa drives through in this big ol' parade of fire trucks and gives my kids candy...WITHOUT SENDING ME A MEMO FIRST and I miss the whole thing.

Did I mention I was home ALL.FREAKING.DAY????????

So what did I do when I got home?

1.) I told Jake he could not discuss it. Instead I listened to Blake "Momma, SANTA.... truuuuuuuckkkkkk"

2.) I made a HUGE deal with Addison about it and told Addison, that because I am in fact the worlds best Mommy EVER, made a call to Santa to remind him (because we all know he sees you when you are sleeping and knows when you are wake, all that stuff, but is super busy) and told him I needed a visit to my house with a special treat for Addison because it as a big day for her and she was 30 days feeding tube free.

(I imagine in her head she is visioning me whispering on the phone late at night while she is asleep... "Santa, yes this is Addison's mom. Yes the one that you brought a Barbie Corvette for when she was five. Uh-huh, I am still mad about that because I wanted a Mustang NOT a Corvette. Yes Santa you can make it right. How you ask? Well as you've seen Addison has been a really good girl, and Blake has done a good job being a good boy, and well today Addison was went 30 days without a tube feeding, and I think you need to come and visit before Christmas so she knows that you KNOW. I don't care if you are busy. I expect you to arrive before bedtime."  And I further imagine that she thinks, "Mommy really is boss. She even went and personally gave Santa directions to my house, and that's why she wasn't here when he got here. She must have got stuck in traffic! My mommy rocks!".... Yes I do sweet Addison. Yes I do.)

Friday, December 14, 2012

Tragedy...

Today a man walked into a school and fired shots in a Kindergarten classroom. I won't discuss the politics or the details of it, I just won't do it.

Bottom line, innocent lives were taken. Innocent, defenseless, CHILDREN. Were taken from their families. Parents dropped their children off at school, only to never bring them home again.

My heart aches as a mom. I cannot imagine.

For a moment I am thankful that Addison and Blake are still to small to even begin to know what has happened. Thankful that I do not have to have that very tough conversation tonight about why bad things happen in this world. Thankful that I can protect them from this craziness for just a little while longer.

And heartbroken that so many other parents have to try to make this make sense to their children who bore witness to these tragic events. (How on earth do you make it make sense?)

For those that are reading this and have been effected in anyway, my heart goes out to you and your family. My thoughts and prayers to all involved. Tonight, my heart is heavy and I am hugging my babies tighter. I just cannot wrap my head around this.

Below are some resources for parents on how to talk to their kids about tragedies such as what took place today...

http://www.ncdhhs.gov/mhddsas/services/disasterpreparedness/MisterRogersFINAL.pdf

http://wtvr.com/2012/12/14/connecticut-school-shooting-how-to-talk-to-children-about-tragedy/


Sunday, December 9, 2012

Tube Weaning Update....

We had our appt with GI. According to their scale she lost 2 pounds (1. this is not uncommon when weaning from a feeding tube, but 2.) I am positive that GI's scale is so wrong. She was weighed the week before at the Ped office, and I weighed her on our home scale that same day for comparison. I also weighed her on our home scale the day of her GI appt too. She def didn't loose 2 pounds.), either way... GI's response to this was "What would you like us to do about her weight loss?" My response was, "Nothing. I won't go back to tube feeding her at this point."

I was SHOCKED when GI was "ok" with that. I really thought she would fight me on it a lot more. Instead we talked about Addison's daily diet and she offered me some other options as far as liquids that might be appealing to Addison, and things I could add to her foods to boost categories. She wanted to be sure that I understood that she needed to see Addison gain weight for three consecutive months without any intake via her G-tube, in order to give consent for it to be removed. I get that, and we are in no rush to actually (pardon the pun) pull the plug. I'd like to see Addison get through this winter/cold and flu season without a tube feeding first. (It's highly common for G-tube babies to stop eating or drinking when they get a cold etc, especially at first.) If she can make it through this without needing additional support then yes I am absolutely all for getting rid of it 100%, after all that is what we have been working so very hard towards, I am just not in a hurry. I'd hate to take it out and then see her need to have it put back in later. In other words, we just aren't there yet, but we are close.

One of the toughest things about this process has been calorie tracking and watching her liquid intake vs. wet diapers. For starters, she certainly isn't taking in the volume of liquid she was through her G-tube (again this is normal) so I am not used to the difference in her output. She still has wet diapers within what is considered normal (every 6 hours or less), but certainly not as wet or as frequent as they once were. And to be honest, it makes me crazy and wonder if she is getting "enough" (she is, I've asked). She "drinks" less then what is "ideal" so to compensate we are offering her purees... (Did you know?...purees/yogurt/other "wet" food count as liquid intake (ounce for ounce) and help prevent dehydration.) I worried myself sick until GI and the Ped both reassured me on this. This also means that we are going to have to work extra hard at increasing what she drinks as she moves away from puree food.

I've noticed that we are falling into a pattern where she eats REALLY REALLY REALLY well for a day or two and then just sort of picks a little for a day or so. Also, normal toddler behavior, but golly doesn't she understand and know that it's important that she packs on the pounds right now? The truth...she doesn't understand. In fact, she is just beginning to understand and learn what hunger feels like and how to satisfy her hunger. I can say this though... she is beginning to behave more like what I'd expect a toddler to behave like as far as food goes, or should I say, she behaves more like Blake. (Ya know my kid who eats anything and everything...Yeah now he is becoming picky, which seems to be age appropriate.)

She and I are learning together. It's our new adventure. Moving away from one (the tube) into another (the world of "real" food and "real" meals.) Not going to lie. Some of these days can be frustrating, but the reward that comes with it is incredible. She is learning to communicate her needs with me, she's gained three important new words "Milk", "Affle" (waffle) and "O-grrr" (yogurt). Which in turn means she can request what she'd like to eat, and therefor she is more willing to eat what she is given, a win for both of us.

But this has been no cake walk that is for sure. I cannot tell you the lengths I go through to get her to eat sometimes. Or how many times I have had to distract her with my cell phone and then thought "Just how much food is on my phone? Should I weight it?" <--- Not kidding. I really have thought about it. For some time, I was the only one who could feed her orally. Why you ask? Because I am a control freak. Because, there is a method to our madness here. Because I am her primary caregiver, I know the tricks of the trade to make things happen. It's a comfort thing between her and I and it's about trust. I know how much is too much on the spoon and when to take her cup away. Yes I could teach someone else I suppose, but it's hard to cram all that into one session and expect a person to remember when they aren't doing it on a daily basis. And we were actually discouraged from doing that by her OT, initially. Until she really became comfortable with eating and could manage things on her own a little bit better, and because what worked today wouldn't necessarily work tomorrow.

That part is getting better, to the point where I can give Jake a chance to feed her and allow myself a small break. And it's actually becoming beneficial to both Addison and Jake. They have now built that trust. (For the record, he has always been able to/and would tube feed her.) He has done an amazing job learning "how to feed Addison". I am very proud of him for that. Now I can go out to the store and leave them home with Jake and know that he can safely feed her.

We are still struggling with somethings, like her eating in a public place or with a large crowd (too many distractions). But our families are also learning, when we gather around the table for dinner, how to react and to keep things as calm as can be. Eventually we'll get to a point where she'll be able to manage her distractions, for now we just limit them. No this doesn't mean we don't ever go out eat. It just means we only do it on occasion and choose places that aren't as crowded, etc. and work up to it.

I am still struggling with giving her some space to have the control she needs while meeting her calorie needs. Our goal is to keep feeding as pleasant as possible for her and let her guide us, while still thriving. It's tough, but we are doing it. I haven't yet found the "perfect" solution. She eats a lot of meals in front of the tv, and sips on her cup throughout the day vs. drinking a full cup at once. Her Nissin Fundo impacts her volume and what she can tolerate which makes it tougher too. It's for certain a work in progress, but for today... My child is eating and thriving. I am choosing to focus on that while we move forward.

Everyday that she doesn't have a tube feeding is one step closer to our goal. I look forward to not having to try and count each calorie she takes in (and try and figure out just how many calories are in each meal I cook, or having to buy prepackaged meals so I know exactly what she is getting).

Please continue to pray for our sanity, and growth at this time. And if you notice that I myself have gained weight, blame Addison. It is for her benefit that I now have to cook fattier foods and I am way to lazy to make low calorie versions for Jake and myself nor do I have the patience.