The Lighter Side of a G-Tube

"Would you like some ice cream?"

The answer to that question will always be "Yes!" from most kids. But not my tubie kid. I get all the free ice cream from CFA, as she will take one lick and decide she doesn't like it. 

Bonus!

"Here's your sprinkle cookie."

And 2 small bites later, I get the rest of the delicious sprinkle cookie.

Double bonus!

At our weekly lunch outings at Subway, we buy 2 meals. 2 sodas to split, 1 bag of chips for the kids to split and then 3 cookies for the 4 of us to split? Nope. My tubie doesn't eat cookies, so I get to pick out a white chocolate/macadamia nut cookie. It's delicious and I don't feel guilty.

Anymore.

I felt guilty a few months ago: I told her to eat her cookie at said Subway. She scarfed it down on a dare. 

She ended up puking it up. Like from the table all-the-way to the bathroom. Sorry didn't quite cover it. And she felt super embarrassed about it. :(

Now I don't push her, and don't let others push her to eat MORE.

Am I completely happy that she is hooked up to a feeding pump and bag every night?

Well, yes, thank you for asking.

I am now.

She gets most of her calories at night, and we don't have to worry about whether or not she eats enough. She has grown 2 whole sizes in clothing in 3 months, she has "more meat on her bones," and now she looks closer to being the spunky 5-year-old she is.

She also has so much more energy now. She can swim for hours in the pool, trying to touch the bottom and teaching herself to swim. She can walk to and from the ball-fields from the parking lots multiple times a week. She can run around and we're not praying (as much) that she won't fall and get a concussion.

Don't get me wrong...you haven't heard from me until now because tube feeding is tough. I almost threw in the towel when she lost 1/2 lb after a month of feedings! (Oh the anger!)

But we persevered and she put up with us. She (and I mean I) even endured her tube being pulled out while in the middle of a feeding. 

Here's what happened: She was playing outside while wearing her cute Elsa & Anna backpack I sewed into a tubie backpack (Thank you Pinterest!), when someone pulled something out of her hands while playing a game and they accidentally pulled her whole tube out! She freaked. I freaked. To the ER we went. 

Next time, she'll be ok and I'll be a big girl and just put it back in myself.

So yes, it can very much suck.

But at least she is growing and I get to eat all that yummy stuff!

The Good, The Bad, and The Ugly

Pre-surgery: Not excited...been here before, she was NOT having any of it!

Let’s start with the Ugly…

We’ve had some really awful days these past few months. Anxious mama, fussy kiddos, lots of jealousy, and twinge of pain—due to surgery and also those of the heart.

I had an over-the-top awful day 2 months ago. Just one of those days where everything goes wrong, like EVERYTHING!!! Stress is through the roof, my anxiety and depression were in full swing, and I couldn’t stand my own skin. (My poor kiddos…at least they got to watch a lot of movies and tv that day!)

 I finally decided to just turn on my computer and start Google-ing “Rigid Spine.” You know, just because I do this a few times a month…just to see if I can make contact. (I would liken it to NASA putting out messages into space in different radio frequencies in hopes of making contact with aliens.) So, at the bottom of the page in underlined blue were the words: rigid spine the view.

I couldn’t click fast enough.

Don’t worry, here comes the Good…

Suddenly, I had made contact. (Imagine me in that part when Jodi Foster is walking on the beach and makes contact with aliens in the movie “Contact,” so out of this world!)

Here was a mom, Mindy Scheier, who created an amazing non-profit company called Runway of Dreams, because her son Oliver has rigid spine.

1st night = rough night

I know!!! I got to see her, him, the whole family right on my computer. And I bawled my eyes out. For a very long time, while smiling. God is so good.

I came to Him, weak, totally spent; and He met me there and gave me this website which led to contact. I can’t EVEN. This moment was huge. It was like Oprah pointing at me and saying, “AND YOU GET A LIFE CHANGING MOMENT!”

I immediately emailed her with the subject line: “My daughter has rigid spine too.” Then, as I started writing my email, I realized I should probably send her my blog. So I did. She emailed me and we’ve been in contact via phone and emails. Our stories are eerily similar. 

She is amazing! She is making a difference with ALL differently-abled people of the WORLD! Truly, I am amazed and in awe. And I want to help. Please help her vision to help all differently-abled children and adults find and purchase affordable, adaptive clothing world-wide. Click here,please.

And now for the Bad…

Bad Girls, that is! These are Bad Girls who do good. (I know that’s not proper English, but you’re just going to have to go with it!) My Aunt and her friends are the Bad Girls of Sarasota. They sweetly chose Josslyn to be the center of their Sarasota Christmas Parade float and also to donate to our family this Christmas.

Playing Crazy 8s with her new cards and card holder! Day 2

I was afraid Josslyn would not be able to make it, but once she heard she was going to be riding on Uncle Tom & Aunt Kathy’s truck in the parade (with her as the center of attention!) she was up and out of bed! Yes, she is totally my daughter.

Josslyn and I went down to Sarasota ahead of the rest of our family, and she was stoked to help decorate the float and spend time with the Lauras, Shelly, Sharyl, Carol, Jessica, Patti, Karen, Gerard, Uncle Tom and Aunt Kathy! I can’t express how this float helped Joss to focus on something fun instead of the pain I know she was having. 

Laura Claire and Dylan also walked the whole parade carrying the banner in front of truck with Daddy helping. We were all so impressed that they made it the whole way! These kids are the best big brother and sister Josslyn could ever ask for!

And so because of all of our amazing family and friends, we had a fantastic Holiday season! Surgeries and all.

Thanks Grandma Patty for the Elf PJs!!!

Love these ladies!

Here's the whole crew!

Joss & Ms. Patti

Gator...

Chomp!

Keith and Joel

Bad Girls

Behind the scenes...sewing with Aunt Kathy

Surgery #1

“She needs a biopsy of her GI tract.” Moments later, “while she’s under, we’ll do a pH probe to check her reflux and then we also need to put in a NG (nasogastric) tube to make sure she can tolerate feedings and to get her electrolytes normal for the G tube surgery, which will occur 2 weeks later.” He handed me a 7-page blood draw order and told me to wait for his nurse to come in to schedule. He was very kind and listened intently. He was very calm. I had brought all of the kids, thinking this was just a quick appointment in which he would throw up his hands and say, “Good luck with the G tube, you don’t need me.” But I was wrong. His sweet nurse must have seen my deer-in-head-lights look on my face when she came in. She did, however, tell me that the NG tube may need to stay in for those 2 weeks before the G tube surgery. She tried to soothe me by saying the nurses would be there to teach me how to use it and also how to put it back in, just in case it was pulled out. (Instantly, the image of Josslyn trying to cut off her cast 3 years ago with safety scissors came to mind. It was suddenly not as funny in this moment as it had been then.)

I am grateful to have an amazing medical team at Nemours in Orlando. I am grateful that after all these years of “Failure to thrive,” these doctors have answers.

But, let’s face it: I’m terrified. I don’t want to see her in pain. I don’t want to see her fighting with the nurses and with us over this tube going through her nose and down into her stomach. And I don’t want her to not be able to handle the feedings. Because, then it will be a whole another scenario and nobody has explained that yet.

I’m slowly counting down the days when this surgery will happen. No longer will I get to check “NO” on the questionnaires asking if she’s had surgery in the past.

I’m also not sure she’ll be ready to go back for her G tube surgery just 2 weeks later. Will she ever want to go back to Nemours? She went from loving it there to dreading it. She’s not excited about the G tube anymore. Too many appointments with too many trips to the x-ray department. We haven’t gone to have her blood drawn because I know she’s going to freak out and I’ll have to hold her down again.

 It’s not easy to do that even when you know it’s for a good reason. Just like, when my grandfather passed away. I’m rejoicing that he’s in heaven with his family and being the life of the party as he was here, but I miss him. He hasn’t really been “him” for years due to dementia, but that doesn’t diminish the fact that I miss him. I’m so thankful I went to see him before he passed. The moment I sat down on his bed, our eyes locked and he smiled at me. Then he took my hands and pulled me to his cheek, where I knew he wanted me to kiss him, which I did. And he smiled for a moment after that, before his eyes stared past me and he didn’t smile at me again for the rest of weekend. Yes, he’s home now. And he’ll smile at me again someday. But for now, I vacillate between sorrow and joy.

I heard today that my friend’s son is going through some of the same testing. I was immediately happy to have someone to talk to, and also, very sad that she is going this with her son too.

It’s hard to have such differing feelings at the same time. I’m stubborn. I pick a side and I stick with it. Having to be 2 things at once is beyond my scope. It makes me want to bury my head in the sand and not come up until I have figured things out. Except, I can’t figure things out. I have to trust these specialists. Most importantly, I have to trust God.

He wants me to do something with all of this…He’s trying to tell me something. (Kinda like in Nemo…I’m Marlin about to escape the East Australian current to head to Sydney; not understanding a thing the turtle is trying to explain.)

But for now, I frankly don’t want to hear that Josslyn will be ok. I don’t want to hear that I shouldn’t worry. I just want people to pray for Josslyn and send her lots of fun things to do in the hospital and at home. 

And I want to help those who will follow in our path. I want to make it easier for my friend and her son.

I just want the best for my daughter. Even if it’s a worst-case scenario for me.

Swallow study at Nemours

Today was a good day.

Today, I threw my older children at my best friend who was having a bad day. Just one of those days we all have. She didn’t tell me she was having one of those days until AFTER I traveled 2 hours away from her and was finishing up with our second of three appointments…she is my best friend and I love her forever!

Today, I met a sweet mother and her 2-year-old son who pushes himself into everyone’s lives around him to bring conversation and most importantly friendship wherever he goes! He has SMA (spinal muscular atrophy). Look it up here. He has this spark about him that I have rarely seen. His eyes light up and he is genuinely happy to see you, meet you and speak to you. But most importantly, I see we met for a reason. Here was a sweet mama who sees the same neurologist as us, and has a miraculous story as well. We made a connection. It was a relief to meet her and be able to share our lives. I look forward to speaking to her more. Find his story here.

Today, our daughter is one step closer to a feeding G-tube. She is not gaining weight, but also not losing weight. She grew 1 inch in 2 months, when it had taken her 6 months to grow 1 inch previously. Josslyn is thrilled with the idea of having a tube. SERIOUSLY. I spoke to her about it months ago and equated it with an umbilical cord: “You’re going to have a special tube that takes in food straight to your belly just like when you were in mommy’s tummy! You don’t have to chew it or anything!” She squealed with delight and not exasperation like I thought she would. In that moment I saw God’s gentle and loving spirit glow even brighter in her. She’s amazing. (I wish I had it on video! I am thankful Joel was able to hear her. I think that’s what helped him accept it.)

Today, I scheduled 7 appointments and rescheduled 1 appointment. I still have 2 appointments to schedule. They have a wait list, so I’ll be answering my phone any time it rings in the next few days or weeks. There won’t be the option to just wait and see who leaves a message. That could add another week or so.

Today, I was overwhelmed by my family and friends offers to help. My best friend offered to take my big kids for any and all appointments coming up. My aunt and uncle offered to help in any way possible. My friends from all around the world have been praying for today.

Today, my son prayed to God, thanking Him for the time Josslyn and I got to spend together. Dylan was not upset that I was gone for the day, but thankful. This is BIG people! The Holy Spirit has been working on him lately…it’s like a Holy Growth Spurt! (Ha!)

Today, I didn’t come home and sit around worrying about the next appointments. I didn’t google G-tubes. I didn’t throw on my pjs and go to bed. I got dinner together, helped with showers & pjs. I unloaded and reloaded the dishwasher. I scrubbed the pots that have been sitting, for a day, dirty on the counter. I listened and read along with my big kids to their books they each picked out, and then read aloud a chapter from the book we are reading together. After I put the kids to bed, I folded laundry and talked to my husband. I got ready for bed and felt compelled to write…because today was a good day. Today God gave me a tiring but good day. He gave me peace. He gave me strength. He gave me all of these people in my life. He orchestrated today. My God is an awesome God.

Truth about anxiety and how I’m coping now:

I do NOT like surprises. I don’t know how young I was when I resolved this to be true for me, but I do remember knowing this from a very young age. You can see this is true when for example, I run into you at the grocery store unexpectedly…I am awkward, I am shy and I am not prepared to see you at that moment. It’s weird, I know. I don’t like that aspect of myself, but it’s me.  My family can also attest to the fact that I would unwrap gifts before Christmas to see what I was getting before the big day…I may even have switched some of my sisters’ gifts with mine (insert evil laugh!) My mom can vouch for this and her frustration at me!

So, now I’m an adult and I still don’t like surprises. I also don’t like not knowing things. This makes me a great student…I LOVE learning new things. Even chemistry 1 & 2, and biochem. Seriously.  I am also determined and willful. Ask my dad. I am so willful; he says I willed our dog to have 7 puppies even after she was “fixed” at the Humane Society! And I am so determined, that if you tell me I can’t or I won’t…I will and I will ROCK it.

So when Josslyn befuddled all of the specialists…I was even more determined to find an answer. However, in the process, I felt befuddled too and totally out of control of the situation. Another aspect of being willful, determined and not liking surprises is that I do not like to be out of control. And when I’m out of control: Cue anxiety.

Some people eat a lot when anxious. Some people don’t eat when anxious. Some people, like me, have bodies that go into such an extreme level of stress that I lose weight no matter what I eat. And I was body shamed by my family and friends. It was hard. I was eating. I was exercising. And I was super skinny. I didn’t like looking in the mirror, or trying to shop for clothes. The smallest sizes were still too big. It was not fun.

My whole body was also inflamed. My hair started to thin because my scalp was inflamed. My annual tests came back out of whack because of the inflammation inside my body. I went to the ER due to painful stomach issues and viral illnesses that never seemed to go away. My body was inflamed, stressed and I was anxious.

Anxious for an answer for Josslyn.

I struggled with this anxiety and depression like a never-ending roller coaster for 3 years. Maybe more if you include post-partum depression which loves to find me after each delivery like a neat little package all tied up in a pretty bow delivered to my doorstep 2 weeks after delivery.

I would have insomnia for a week before any new appointments and then not want to get out of bed after each appointment because there was still no answer. I hope my kids were young enough not to notice these things, but I’m sure they did. I would have fits of crying, hopelessness, rage, and then back to “normal.” I put on a happy face in front of friends and family. I didn’t feel authentic, and I also felt ashamed. Here I am a Christian, and I am not relying on God. Here I am a strong mother, and I am collapsing under this enormous weight I can’t stop thinking about.

Sometimes I was fine. Sometimes I found joy. Sometimes I found laughter. Sometimes I felt peace. Those times were what gave me strength and the ability to keep going. Joel, friends and family helped me immensely. I cannot forget the help of friends when I needed them. (Another blog post coming up on support).

I went to my primary care doctor a few weeks after Josslyn’s appointment with Dr. Finkel and I broke down. I told her what I had been going through and that I needed SOMETHING to help me. I love my PCP. She gave me a huge hug and spoke kindly to me and then gave me a prescription for Zoloft. She referred me to counseling services and told me to come back in a month. (I haven’t found a counselor I can consistently see, so if you have any recommendations, I’d be happy to hear them).

I immediately filled the prescriptions and started to take it. I got a really bad virus and stopped the medication for 2 weeks to recover. I started it again and I haven’t stopped.

I am a new person. I am calmer, better able to see the silver lining and not get bogged down in this mess called life. I still have anxiety attacks, for instance before seeing a new specialist or when I think about the questions for the future, but they are fleeting and manageable. I can enjoy life again. I am not pretending. I am not crushed under the weight of what this world has given me. I am a better believer. Crazy to think, but I am. Having self-control and clarity of mind has helped me to be the person I am supposed to be and God designed me to be. I can be a homeschooling mom, Guardian ad Litem, and start my own organization business. (You can contact me if you need any organizational services).

I still don’t like surprises and I’m still pretty willful, that will always be me, but the anxiety is not what I want to be. I am so happy I said yes to Zoloft.

Will I always be on Zoloft? Maybe. And if I am, does that make me a bad person? Does that make me weak? Would I/Do I feel ashamed?

To all of those questions: No.

Don’t think you are ok when you are not. Don’t assume you can get through this yourself. You are not weak when you say yes to Zoloft or any other medication for anxiety, depression or other mental illness. Hopefully you won’t feel ashamed, and you’ll try what your primary care provider suggests after you tell her or him the whole story. Don’t just walk in and say you are fine and nothing is new…walk in there with your head help high and plenty of tissues or even with a letter to them if you don’t want to rehash everything outloud. Somehow you need to get the help you need and deserve. Life is messy. And you may need some help in this mess. Don’t deny yourself joy and hope because you are proud or feel ashamed.

Best of all: my inflammation is gone, my hair has never looked better, I’ve gained weight, I can shop for clothes that fit, I can run like I’ve never ran before, I’m a better wife, mom, sister, daughter, niece, granddaughter, friend…and oh yeah, I don’t have debilitating anxiety attacks anymore!

I still don’t have all the answers to what the future will be for Josslyn and us, but I have hope. And no, that doesn’t come in a bottle; it comes with believing in my Creator and having trust in His path for Josslyn’s life and mine too. I have also learned that I will not know what the future holds and I’ve had to let the control go. I have to let it go every day. It’s hard, but worth it.

A letter to the mom who just found out her child needs therapy…

You know your child better than anyone. But here you are, in the pediatrician’s office and they are suggesting your child is behind in motor skills or speech.

They give you a referral and a little pamphlet with some information.

The ball is in your court now mama. Don’t panic...but do run!

Run home to research which therapy location is the best and closest to your house…you’ll be there a lot. Chances are you’ll be there more often than grocery shopping for the next few to many months.

But that’s ok. It’s great actually! Your kid is going to be able to pull themselves up, or speak clearer words, or even just be able to move their head side to side…which, let’s face it, would be more than what s/he is doing right now.

It’s hard to admit your child is
behind.

But don’t avoid it.

It’s just therapy.

It’s just life-changing skills for your child.

Again, RUN to it!

Run…run to their physical/speech/occupational therapist right now. It will change their lives and yours.

That’s your job. Yes, we need to keep them alive, fed, and changed but also to help them live life in the best possible way and with their best possible abilities (which may need a helping hand).

Don’t wait until they start school…

Don’t wait until for their next birthday…

Don’t wait for your kid to “catch up.”

DON’T WAIT!

It will be worth it. I promise.