Susan, Author at 2 Cats and Chloe

#FridaysWithLorelei: Finding Joy. Hold on to Hope.

We have been very cautious about sharing too many pictures of Lorelei on Facebook and social media for many reasons that I am not going to get into here. Last year I started doing a #FridaysWithLorelei post, once a week with an update and a picture on Facebook. And I love it. It allows me to share a tiny bit of our life and not overwhelm the world and myself with our on-goings. I thought maybe I should start that here on the blog. Make a point to do an update once a week. Or when I remember. Or when I have time. Because let’s be real - what’s a lifestyle blog if you aren’t actually documenting your life?

Like my facebook posts, I may only use one picture for these posts. I know it’s not normal for blogland - but bite me. I’m busy and I haven’t brushed my hair in days.

With that, I just can’t wait until tomorrow! So I give you the blog’s first #FridaysWithLorelei update:

What a week! Michael has been away for work so in addition to my normal Lorelei to-do’s (and work/life/etc) I am also picking up the 1AM medicine and refilling of the feeding bag shift every night. After a few days I am finally adjusting to the middle of the night wake up again. I have no clue how I was even functioning on no sleep while pumping every 3 hours for 8 long months…

Yesterday we redid her lab work (easily with one of our favorites from the VAT team). We got some good news and some not-so-good news. To avoid a long scientific post, I just ask that you pray for Lorelei as one of the meds hasn’t been working and it really needs to work. They are adjusting it to hopefully help balance everything out.

This life is so hard. For a few minutes, I let myself get comfortable. I took her to a park with a friend. I took her to Target. She didn’t puke much last week at all. I listened to so many who say “She looks so normal!” Hours before I found out the labs weren’t stellar I messaged a friend and said “I need a break, let’s go to Key West!”

The not-so-good news yesterday was a punch in the gut reminder for me. Her nephrologist called me and explained as much as he could. Her geneticist texted me for hours. The nephrologist used the sentence “It’s 2017 - Science hasn’t caught up and there really isn’t anything we can do.” Which, surprisingly, didn’t sting. It was honest and heartfelt. It was the reminder I needed.

There is no cure. Sure, we can manage certain parts of mitochondrial disease. But there’s no cure. We are hopeful to figure out the right dosing and the right medications to keep her little body functioning to the best it can. Hopeful (and thankful) for the team we have that is helping us manage her complications.

But there isn’t a cure. We can try our hardest to control the situation but the long and short of it is - she has a disease that will eventually take her life because a cure has yet to be found.

So as we always do, we keep going. We make the best decisions we can for her. We make the best decisions we can for us. We focus on the present and try not to open Pandora’s Box of worry and fear. We trust God. We check things off her bucket list like there is no tomorrow, with the hope of many, many years of adding more and more to that list. She is happy. Her hair is awesome. Her rolls are outrageous. Her personality is wonderful. In so, so many ways, WE ARE BLESSED.

The picture above was taken today in her stander that has been returned! Huzzah!

Please Note: I am not posting this so people feel bad for us or for Lorelei. Please, never feel bad for us. I am writing it because it helps me process. It helps me cope. And I hope it helps inform others about mitochondrial disease. So instead of “I’m so sorry” or “you’re so strong” in the comment section below, let’s mix it up a bit - you tell me what is on YOUR bucket list for you or for your kids?

We all have some degree of dark and scary, not-so-great shit going on in our lives - but we all need to find joy and hold on to hope.

April 19th and “The Incident”

by Susan

If only you could see the pile of posts I have on deck for this blog: recipes, stories, DIY hacks, and a plethora of parties. My clients’ blogs have taken a place of importance these days (because client’s pay, and while this blog makes money and has many more followers than blogs about home warranties and real estate, mama’s gotta pay her bills!)

Lorelei is now a year old, officially. Her birthday was in February. This month though, she reached her adjusted 1 year old age. Hooray! We made it! And boy, what.a.year. She is really behind physically and developmentally, but she is happy, relatively “healthy” considering she has a terminal condition and she is still moving in the right direction. Oh, and I have to mention how outstanding her hair is these days?! The girl has got excellent hair!

Today, April 19 was one that I knew would sting a bit for me. As I sit here at 630PM, my heart is full of bittersweet emotions: hopefulness, sadness, and a pain that shakes me to my core, paired with love and thankfulness for where we are now and the sleepy pre-bedtime snuggles Lorelei shares with me every night in our home.

One year ago today, Lorelei’s g-tube was placed. She underwent her first surgery. We handed her to a surgery team and trusted them with our little girl and all of her unknowns. We prayed. We worried. We prayed some more. Mito kids can’t handle certain types of meds and anesthesia treatments. We really didn’t know how April 19, 2016 would pan out.

We could not even have imaged the outcome we received.

When our surgeon came into the waiting room, with the biggest smile on her face, a wave of relief washed over me. She did it. Lorelei did it. I was still very sad that my daughter now had a piece of equipment in her tummy. She had a new, semi-permanent addition to her body, showing everyone that she is “special.” (That feeding tube though, one year later I can firmly say I am so thankful for it.)

But as I type this, at 630PM - my heart aches thinking about this exact moment 365 days ago. A moment that we haven’t shared with many people. A moment that quickly defined the type of mother I would become. A moment that shakes me every time a new doctor or nurse lays their hands on my child. A moment that is one more reason why I don’t trust many people.

One year ago right now, I was eating pizza, in our new home, surrounded by family. It was the first night in weeks that I was not at Lorelei’s bedside because she needed to recover from surgery and couldn’t take a bottle that night anyway. I remember getting ready for bed early that evening. I was well beyond the point of exhaustion. But I remember this feeling, a feeling that only a mother can explain. I told my husband, “I just feel like I need to be there.” I NEEDED to be there. She needed me.

He convinced me that I had been there most of the day, that she was sleeping and that I needed to sleep also. So I put on my pjs, climbed into bed and my phone rang.

“Mrs. Geoghegan?”

“Yes?”

“This is one of your daughter’s doctors. There has been an incident.”

My heart. I thought it was going to explode. I felt like time paused and there was no air for me to breathe. Before surgery, they prep you for the side effects and the worst case scenarios - you know, things like stroking out, acidosis, death. So I waited, expecting to hear there was a complication with one of her medications. Expecting to hear that our worst case scenario happened. Because I had seen parents lose their babies in the NICU. I had experienced families crying as their babies were baptized in a cold, sterile hospital NICU pod, before she went home to Jesus instead of home with her Mommy and Daddy.

“There has been an incident.”

“Okay. Is she okay?”

“She has a broken femur.”

Imagine that moment, when Zack Morris says “Time In” and everyone crashes back into place.

“She has a WHAT?!?”

Someone made a terrible mistake during an IV stick. A nurse (and team) that we were forced to trust to care for our daughter, hurt our child. The pain I experienced that night, throughout that entire week, and still experience today, because of a quick mistake, was like buckets of salt in an open, infected, raw wound. It is a feeling I had never felt before. Someone broke my kid. Someone hurt my 6 pound, 9 week old, tiny baby. A baby that already had a rough start and an extremely unfair diagnosis.

And unfortunately, that wasn’t the worst part. I fully understand that accidents happen. A femur break is a very, very bad accident. But days later, their story started to come together and we realized that our sweet child laid in her bed for 4ish hours, with a broken femur, zero pain medicine and no one even noticed.

When the night nurse clocked in and began her rounds, she noticed that Lorelei was crying more than most babies do 12 hours after feeding tube surgery. She then called the doctor and asked for him to check her out. That night is such a blur for me. I remember almost every single nurse and doctor we had throughout our 77 days in the NICU but for some reason, I cannot remember who the nurse was that brought her A-game to night shift and rescued Lorelei. Whoever she was — from the bottom of my heart, thank you for paying attention to her cries when I was not there.

We have not shared this story with many people. And you better believe I am leaving about 5 more hours of details out of this blog post. So why share now? Early on, in this twisted and unexpected journey, Michael and I decided that we wanted to help as many people as we could along the way. Whether it is other NICU families, other mitochondrial disease families, doctors or nurses. We want to help people (including ourselves) learn how to do things better in medicine, life and faith.

If I could only say one thing about this “incident” I would say it shook my world, almost as much as her diagnosis. April 19th may have simply been a bad day at work for that nurse, but it is a day that will forever play over and over again in my head.

Your career of choice doesn’t matter. Whatever your calling is, do the best you can do and remember your job impacts someone. Your actions and reactions matter. Hopefully sharing this part of Lorelei’s story will stand out to someone, making him or her think differently. Think above and beyond a mistake. Think about consequences. Think about saying those three words that my heart aches to hear, one year later: I am sorry.

Today is Rare Disease Day!

by Susan

Today is International Rare Disease Day, and actually the anniversary of the day we received Lorelei’s FBXL4 Mitochondrial Disease diagnosis. More than likely, prior to us, it is quite possible that you had not heard of Mitochondrial Disease. I definitely had not!

Rare Disease Day 2017 Mitochondrial Disease

I’ve said it before, and I will say it again: we are one of the “lucky” families who have been able to receive a diagnosis, especially so early in Lorelei’s life. I firmly believe that her early diagnosis (thanks to research and patients before us that lead to new testing and discoveries) will help her live a longer, healthier life.

So Mito. I will be the first to admit that I was never a huge fan of math or science growing up. I mean, science was cool, but just not my jam.

I never realized that my styrofoam cell project in 10th grade bio, where I used a straight pin to add a styrofoam mitochondria, colored with a magic marker, with a little flag that said “mitochondria: the power house”, into a larger styrofoam ball with a wedge cut out of it (i.e. the cell), would be something that would later be the sole reference of “mitochondria” in my memory bank. Until February 29, 2016. When we were told my daughter had a rare disease. A rare mitochondrial disease.

A geneticist and a neonatologist sat across from my husband and I, and explained that our brand new baby who had arrived two months early, has a specific form of mitochondrial disease that has only been documented a handful of times in a handful of studies.

In my mind, we became the definition of rare.

Research and awareness for rare diseases are crucial. Science is evolving and giving families like mine hope. Hope that we can prove statistics wrong. Hope that a cure will be found. Hope that my daughter will live a meaningful life. Hope that this disease is more common than we thought, and there are people who have it, who are living long, “normal” lives. Hope that this disease can be prevented for any future children we may have.

With research, possibilities are limitless!

Doctors are taught in school “when you hear hoof beats, think horse not zebra” because often times, it’s the more common answer. Today (and every day) we are thankful for the doctors, researchers and scientists that “think zebra” - that think outside of the box and that don’t give up without an answer when it comes to rare symptoms, rare diagnoses and rare little humans like my Lorelei.

Fun fact: According to the United Mitochondrial Disease Foundation, mitochondrial function could be linked to so many other more common, yet still rare, diseases including Alzheimer’s Dementia, Parkinson’s Disease, Huntington Disease, ALS, Multiple Sclerosis, Cystic Fibrosis, and so many more.

Right now, my family is raising money for Lorelei’s Fund for Mitochondrial Disease Research at the Children’s Hospital of Philadelphia. Dr. Falk’s lab is studying Lorelei’s exact genetic mutation, giving us hope that through her research of this rare disease, anything is possible.

If you want to donate - you can read more about our story and give directly to mitochondrial disease research here. If you have any fundraising ideas, or would like to host your own fundraiser for her foundation, please let me know!

Want to learn more about Rare Disease Day 2017? You can catch up on that here!

Feeding Tube Awareness Week: Our Journey with a G Tube.

by Susan

At a certain point, there must be an “awareness week” for everything under the sun… Polar bears? August. Gluten Free Living? November. Accordions? June. Feeding Tubes? February! I used to think that all of these “Awareness Weeks” were silly… I mean, come on… do Accordions really need their own week of awareness?! And feeding tubes… really? But yes.

(Well, I honestly can’t speak about the Accordions but Feeding Tube Awareness Week is actually important!)

As most of you know, my daughter is 100% dependent on her feeding tube. This silly tube and pump and button keep her alive. Without it, our journey thus far would probably have been even more bumpy than it already has.

Last summer, we were eating out in a restaurant with a couple of friends. Lorelei was due for her 12pm feed, so I unobtrusively set it up, leaving her feed bag hooked to the edge of her stroller while she slept and ate. There is usually one, quick beep when priming the milk through the pump. But nothing louder than a cell phone ring. We had some onlookers, a couple with probably a 10 year old son. My mom made the comment “Those people are very interested in what you’re doing.” I was in my groove. I didn’t notice what was going on. When we left, my friend said to me, “I’m shocked you didn’t go say something to them.” What I didn’t realize was that that entire family was pointing, laughing and taking pictures of my daughter and her feed bag. My initial reaction was anger. Who the heck does that?! But then I felt sad for them. For their young son. They didn’t understand. They made fun of what they didn’t know. They were ignorant of our situation and how this not-typical tube was saving my child’s life.

So maybe that is why we have awareness weeks. Maybe that is why these silly weeks are important. Maybe awareness weeks like Feeding Tube Awareness Week serve the purpose to educate and make these things a little less scary.

I had to learn everything really fast. In the NICU they throw words and phrases around like we all understood and spoke their language. Their words blurred over my head - all I knew was that my baby had wires and tubes, lots of wires and tubes, coming out of her.

Lorelei has had an NG tube (runs down her nose, throat and into her stomach, it is not permanent and easy to remove) and she now has a G tube (a button or tube that is surgically placed on her belly that puts food directly into her stomach, it is semi-permanent). I have friends who’s kids have GJ tubes (where food bypasses the stomach and goes directly to the intestines).

The decision to switch from an NG tube to a G tube was tough for us. It was scary. It was the first semi-permanent (in our case it will probably be permanent) visible badge, telling the world that she is not typical, that she is a “special needs kid.” Our hospital doesn’t usually allow babies to leave the NICU with an NG tube. So if we wanted to go home, we had to opt for the G-tube. I was sad. I was angry. I was upset that her neonatologist just wouldn’t give in and let us leave with the NG. She would get there. She would learn to eat. She would get stronger.

I cried on the phone with a dear friend who is a speech therapist. I clearly remember her saying “Suz, as a speech therapist, I would tell you, it’s not a big deal. It will help her. As your best friend, I will tell you that this is breaking my heart too.”

Turns out, other than loving this baby unconditionally, the G tube was the best thing we ever could have done for her. Lorelei has fattened up. She is thriving as much as any kid with a terminal illness can thrive. She is defying odds. She is able to eat and sleep at the same exact time. (Be honest, haven’t you always wanted to have that super power?!) While it has been a scary ride, we owe so much to this tube. Without it, I honestly do not think that Lorelei would be with us today.

So really, what is the purpose of this long blog post? I want to take this opportunity to tell you to ask questions! Let your kids ask questions. Staring, pointing and laughing has never educated anyone. It just makes things more scary and unknown… and is basically poking the Mama Bear.

Little kids are curious. And that’s okay. It’s actually outstanding! I can’t speak for all tubie moms, but I much prefer conversations about my daughter’s condition or tube. Don’t hush your children in line at Target, let them learn. Usually I just tell them that Lorelei simply eats differently than they do. And most of the time, kids are completely okay with that answer and think her pump is the coolest thing ever. (Adults are often the ones who seem to be freaked out.)

Yes, sure I wish my child could eat the same way I do. I wish she could enjoy tasting food. I wish I could use bibs for more than vomit or capes. I wish that we could do a traditional cake smash for her first birthday next week. For crying out loud, I’m a foodie-lifestyle blogger. Food is important to me! Eating is a social event. I’m sad it is something we miss out on. So while I am thankful for her tube, I’d be lying if I said there weren’t days that I didn’t resent the damn thing.

So there you have it! My real feelings on the feeding tube. My bittersweet, love and hate, emotional journey as a mom of a tubie. I would love to do a follow up post with any questions you may have! What do you want to know? No question is stupid! What can I tell you to help spread awareness and educate people on feeding tubes? Drop your questions below! Let’s make feeding tubes “less scary” together.

Whole30 Chicken Nuggets: Ready for the Super Bowl!

by Susan

You know what is crazy, last year, Super Bowl Sunday was the last “normal-ish” day of my life. It was the last time I went out with my husband and carelessly hung out with friends, despite feeling sluggish, before the storm and mandatory bedrest hit the next day. I still blame that odd “puppy, monkey, baby” commercial…

Food wise, I have two goals in 2017. 1 - Eat out less often. 2 - Make non-paleo foods paleo and/or whole30 compliant. Last week, my mom and I were driving home from yet another doctor appointment for Lorelei, when my mom said “Let’s just stop at Chic-fil-a!” I knew if I stopped, I would be terribly tempted to drink a frozen lemonade and inhale their crazy delicious waffle fries… but this would’ve broken both of my 2017 food rules. And I knew I had a few chicken breasts at home that needed to be cooked. It also, just so happened to be the day that my thrive order was delivered! Hello Chipotle Lime Paleo Mayo and Paleo Ranch! I NEEDED something to dip into these sauces!

Ergo……. Paleo, Whole30 Compliant Chicken Nuggets - in time for Super Bowl Sunday!

I will be the first to tell you, I really don’t understand football. But I’m an absolute marketing junkie so I love rating the commercials and hidden branding throughout the Super Bowl. I also love the food. It’s the first time after a month and a half of eating clean since the holidays (usually) where you are tested. Decisions have to be made. Do you eat the junk or eat healthy food?

And before the Whole30 Police jump all over me… Technically, unless you have a crazy addition to Chic-fil-a nuggets outside of the whole30, this isn’t SWYPO. If you ate KFC every single day last month before you started the Whole30, yes, this is SWYPO. This is clean, breaded chicken bites and a perfect option for game day!

Whole30, Paleo Chicken Nuggets

Prep time

10 mins

Cook time

10 mins

Total time

20 mins

Author: Susan {2 cats & chloe.}

Serves: Serves 4-5

Ingredients

1 pound of Chicken
¼ cup of Almond Flour
¼ cup of Arrow Root Flour
2.5 tsp of Garlic Powder
1 tsp of Salt
1 tsp of Pepper
½ tsp of Smoked Paprika
1 tsp of Onion Powder
1 TBSP of Coconut Cream
1 Egg
Coconut Oil

Instructions

Cut your chicken up into small bite sizes (or if you want to make these into tenders, cut them a bit longer/larger) and set aside on a plate.
Mix all of your dry ingredients into a bowl, blending them together.
In a separate bowl, mix your egg and your coconut cream. (Unlike a lot of recipes, I recommend using warm coconut cream. Straight out of the can in the pantry!) Mix these together so that the cream blends in with the egg and is a eggy-creamy mixture.
Dip the chicken pieces into the egg mixture. Make sure it is covered completely.
Using a fork, move the eggy-chicken into the dry ingredient bowl. Roll it around and cover completely. Once covered, set it aside on a separate plate.
Once your chicken is all covered, drop a spoonful of coconut oil into your skillet on a medium heat. Once hot, place your chicken nuggets into the skillet. Let cook for 2-3 minutes on one side, then flip and do 2-3 minutes (or until cooked) on the other side.
ProTip: Don't over crowd the pan. These nugs will burn fast. I cook mine in 3 groups.
Wanna make them spicy nuggets? Add a dash of cayenne pepper, red pepper flakes and/or chili powder! So good!

These Whole30 Chicken Nuggets are legit. If I had kids that ate food by mouth, this would be a go-to in our house. Hell, it’s a go-to now for the adults. My mom thought I was crazy when I told her I was dying for some outstanding paleo nuggets - she then went back for seconds and thirds! This was an easy meal to make and will be perfect for keeping game night healthy!

I paired these Gluten Free Bites of Awesomeness with steamed broccoli in my favorite Circulon Momentum Lock and Strain Steamer (you can find it a Kohls, Amazon and Macy’s - you can cook and drain all in one!!) and my husband’s favorite Whole30 Sweet Potato Fries. I didn’t have any whole30 ketchup available, and I desperately wanted an excuse to eat my Paleo Ranch and Paleo Chipotle Mayo. These all paired perfectly with the paleo chicken nuggets.

Looking for other ideas for a Whole30 (or paleo) Super Bowl Sunday? Your friends will never know my wings are healthy. These Whole30 Deviled Eggs taste great and could easily be thrown at your ex-boyfriend’s car (or the television if your team doesn’t win). And who can say no to Prosciutto Wrapped Asparagus?!