The Groenewalds

15/09/2023

update.

Little man started having staring spells again this week. It’s almost exactly 2 years since they started last time. But last time we didn’t know he’d had a stroke before. So everyone was very quick to check things out. We got into see neurology TODAY! I’m shocked! Anyway we have an MRI next week and 3 24 hour eegs next month to check for seizures.

He’s missed so much school but he’s very excited to go tomorrow. It seems like he’s doing better than everyone expected for the most part. We have a massive team meeting next Wednesday to discuss if we need to make any changes to his IEP (like 15 people will be there!)

I’m so proud of him and so grateful for him!

He’s starting to express his own unique thoughts about his body too! Stating I’m hungry, I’m thirsty. Just in the last month or so!

On Monday when he had his first staring spell after about 20 minutes he shouted, it’s ok. I’m better now. It was my brain. Which is so profound for him! And so helpful for us to make sense of what’s going on in his little body full of mysteries.

02/09/2023

Henry has neutropenia so one of the risks of starting school was getting sick… a lot. We talked a lot about the pros and cons. We met with the school several times.

Friday morning they told me 2 kids were out with fevers and I decided to let him stay because he’d probably already been exposed and we gotta build his immune system even if it struggles.

So today he hit a temp of 102.2 and we are now at the ER for the neutropenia protocol. What is that you ask? Blood cultures, blood, count and virus panels. Then he’ll get some IV antibiotics and assuming the blood work is ok - we get to go home to wait for blood culture results. If something grows - we’ll get a call tomorrow to come back to be admitted. That last step hasn’t happened since 2020.

I’ll keep ya updated in my stories.

01/07/2023

These were the hardest days. When Henry had his 3rd open heart surgery but honestly this whole last year has been hard. The one thing that has kept all of our spirits up@is looking forward to Henry’s wish. To go to Disney and meet Woody and the Gang. We go this fall and we can’t wait but already we want to pay it forward to other families.

This month we are focusing all our content creation on raising funds for Make A wish. Events for this week are in our stories. I’ll be posting everywhere a little extra this month too. Invite your friends we should have some fun times. Links are in my bio.

04/05/2023

In case you have missed past posts about streaming and are unfamiliar with how it works - here's what you need to know.

If you have amazon prime you can subscribe for free. This gives us a couple dollars every month you re-subscribe and costs you nothing. Create a Twitch account and then follow the link in the comments to subscribe. This also gives you ad-free viewing.

Another way you can support us is by watching the stream or putting it on to play in the background. You can have it play on a device (even smart TVs or just a background browser tab) Allowing the stream to play gives us ad revenue. With only a handful of viewers last week I made $4 just from ad views. More viewers = more $$ But it doesn't come from your pocket!

Chatting during the stream and simply viewing the stream boosts me in the Twitch algorithm to get more viewers who may be interested in my content.

So if you've been wanting to support our family during this difficult season this is a great way to help create a more sustainable situation for us.

02/05/2023

Did you know new videos have been posted to our YouTube channel? Check out the beginning of Season 2 now!

Yes, this is the real, actual beginning of season 2!Thanks for coming on this journey with us. You can support us by watching more videos and finding more of...

02/05/2023

I haven't posted here that we are streaming again. oops!

Catch my streams this week with the following schedule

06/04/2023

It just hit me. 5 years ago… this is not at all what I imagined life would look like.

I was actually pretty terrified that I wouldn’t be a mom any more. We had such a hard time getting pregnant with Henry. Then we we’re told he had a problem with his heart and there was a 35% chance he wouldn’t make it to his fifth birthday.

That number felt huge. But it made me fight harder.
That first year is a blur of exhaustion and hospitals and doctors and fear. So many hospital stays so many therapy appointments. John broke his leg just to make things more interesting… I cried over the dishes. I cried in the piles of laundry. I didn’t think that season would ever end. Daily life felt impossible. Feeding everyone, keeping them clean and clothed was all I had in me. But slowly routines were established. John got better and things got brighter day after day.

Reflecting back we are getting ready to celebrate that Henry has beaten the odds. He has not only survived but thrived. My worst fears in all of this was that he would have a stroke and develop autism. Both happened and we’re all still ok. We find ourselves in another season where daily life feels insurmountable. But the roles are reversed. John is drowning in dishes and laundry and toys. I’m fighting for health and doing my best to help where I can.

I can’t believe we made it to 5 years. I thought we’d be more stable. I thought life would make more sense by now. Instead we are living in the remains of so much trauma, hoping to find clarity and stability.

With bills to pay and groceries to buy we won’t be able to celebrate this big milestone for Henry like I had imagined. But the size of the celebration doesn’t dictate the size of the victory.

Thank you to the thousands of you that have prayed for Henry over the last 6 years. (While I was still pregnant with him too) thank you to every single one of you that have donated each time things got extra difficult. Or met practical needs in other ways with meals, gifts, or just lending an ear or a shoulder when it was all just too much. We wouldn’t be here without each of you.

24/03/2023

I cherish the time to pamper my princess.

Cut and painted her finger and toe nails today and she’s willingly wearing her glasses going on an hour. Now we’re cuddling watching her favorite show and I just want to capture this moment in a bottle.

Thank you for making me safe painting her nails - and “pink nails” is the only reason she’ll sit still for me to cut them.

11/03/2023

Incase you don’t see updates on my personal profile. We’ve been a bit quiet around here because we as a family continue to collectively struggle with health challenges and financial limitations. Just getting through each day is a difficult struggle.

Henry has been diagnosed with Autism and the resources we have here in North Dakota are very limited. We are looking to move at the end of this year to a state with more resources and a bit closer to a city.

Since we returned from Mayo Clinic in September my health has steadily declined. So far doctors have been unable to discover the reason for the decline but more doctors are getting invested in finding me help the longer I struggle and worse I get.

When I have a little energy I have been playing minecraft. It’s just enough of a puzzle for my brain to distract me from pain but not so stressful to make me more sick. I’ve been posting videos on YouTube and the account is starting to gain some traction. While I do hope to start posting to Growing with the Groenewalds when I feel a little better for now - this has been a good outlet. If you’d like to support that channel - you can check out the latest video.

Survival days 8-10Join my discord and get access to play with me when I play live. https://discord.gg/V4TyCBJdLive play is currently a bit unpredictable due ...

10/12/2022

Snacks for dinner and movie night.
A new weekly family tradition inspired by .smartt

Tonight we’re having mini pigs in a blanket, veggie and hummus plate, fruits and nuts plate, with a few chips and Oreos to share.

The kids eat so good since we started this tradition.

It’s an easy dinner prep and a fun time just enjoying a movie together.

Tonight’s pick was Henry’s Home Alone 3.

02/12/2022

Surprise! Elle is getting glasses. We noticed one eye kept drifting in and crossing. We got her into the eye dr today and she’s getting some fun pink glasses. She’s mad because she missed her nap and it’s lunch time but she’ll be so happy to be able to see!

29/11/2022

Today during my 2 hours in the car driving Henry to therapy I listened to the memory making mom by .smartt and I was shook.

Mind you, this is supposed to be a gentle encouraging book, but I was mixed grieving that parenthood has looked so different for us with Henry’s challenges and convicted that while I have really great reasons for not getting around to celebrating the kids birthdays this year… I also still feel like the worst mom for not finding a way to get out of the daily grind enough to make special moments for the kids. We’re talking hot tears rolling down my face as I drive down the highway level conviction.

So tonight the kids were exhausted from not sleeping last night so they went to bed early. I’m exhausted too for 100 reasons but instead of collapsing into bed myself we cleaned the living room and put up the tree and put out the nativity set they got from Mimi last year.

John and I also sat down to start the advent devotional we’ve been meaning to do for years.

Tomorrow we’ll start reading some Christmas stories and hopefully Amazon will finally deliver the stuff from a friend who ordered us the stuff for our Dec 1 Christmas breakfast.

I also decided the vlog needs to happen so a new episode is coming unpacking more of these things. Stay tuned!

25/11/2022

I’m so frustrated with not having realistic expectations for myself. I am constantly disappointed and that frustration results in lashing out at others around me too often and I honestly don’t know what to do about it.

I dialed back my expectations for myself for today multiple times. I wanted so much to do a craft with the kids and make today more fun for them. Instead they were just frustrated that I was in the kitchen so long struggling to make them a good dinner.

I made a really healthy dinner but I think just from the work I’m flaring bad. My pain and swelling in my joints is terrible.

So my spoonie friends… any suggestions about how to be kinder to myself?

23/11/2022

No, mom you can’t have your I’m stealing it!

Ok sis, but you have very little heavy metal exposer… can I have it back please?

20/11/2022

Thank you Minnesota for sharing your germs with us.

Elle and I are the first to go down so I think we caught something at a rest stop because John is her current favorite parent and bathroom time was the only time they were apart.

Everyone else is on boosted vitamins and elderberry from

17/11/2022

Chilling at Mayo Clinic between appointments.

We’re here for a follow up after surgery. He did so good with his blood draw they kept giving him more toys 😝

(I wish I got toys for blood draws! Haha)

26/10/2022

I’ve been trying to think how best to communicate an update. Somehow the state of the house seems to do so well.

Last week I (Nicole) hurt my back. So bad I could hardly walk. It resulted in a trip to the doctor for some tests and pain management.

They did an MRI and my back is hot mess! No wonder I’ve been in pain. I see a spine specialist next week. The doctor gave me some steroids and pain meds so I could get a little mobility back while I wait.

The steroids turned the light on in my internal house. It’s like I came alive for the first time in a while. There was still pain (I’m always in pain) but I had energy! I had much less pain. I wasn’t so weak. The dizziness, palpitations, and general bleh was gone! I had a 5 day script so I made the most of it. The house is the cleanest it’s been since my mom was here. The kids got quality time with me. I cooked and baked so we have some food ready to eat.

As I took my last dose Monday night I felt sad and worried about what would happen without it.

Today my body is craving the steroids. I think I have a significant hormone problem going on. Endocrinology can get me in Nov 15. Hopefully we’ll get some answers and a clear path forward to reclaiming my life.

One the meantime while I’m so thankful for the 5 great days I had, it made it so much more real how much I am missing out on every single day and today in addition to a migraine, severe nausea, and weakness I am grieving the loss of myself.

Thank you for your continued prayers, support and encouragement. Those who have taken time be present with us in this season with phone calls, visits, and meeting practical needs have meant the world to us. Thank you again!

Please pray with us that God provides for our car insurance, electric, heating, and phone bill before the end of the month.

If you feel led to give we have pretty much every app so if you want to send in a way not listed feel free to send me a dm.

Cashapp $thanxnicole
Venmo Nicole-groenewald

Or you can also help support us by watching our streams on twitch or do some Christmas shopping from

18/10/2022

This guy…
He has picked up my slack while I’ve been so sick the last few weeks. He’s been amazing.
Today, he feels like the world is falling apart. 2 very close family members are in the hospital in very serious condition on the other side of the world. He’s feeling overwhelmed and helpless and so many other big emotions that are hard to name.

Please keep John and his family in your prayers today.

12/10/2022

Update and a prayer request

Henry is just thriving. He’s growing and doing so well. We are seeing some more “autistic behaviors” and we found out that we are eligible for a lot of other benefits if we get the label… so we’re going back down that road. I feel better about doing so now that we know about the stroke when he was 2.5 and the metabolic disorder. I think these are the main causes of the troubles.

I’m doing better in someways. Worse in others. I have a little more energy and the chest pain and palpitations have improved significantly.

Now my stomach is giving me more grief. This has been a life long off and on problem. Fortunately I have a great GI doctor who is working hard to actually get to the bottom of things.

Which brings me to my specific prayer request. My esophagus muscles are not working properly. This was confirmed with a swallow study. There are a few causes - one requires sorta urgent surgery or it will get worse and I’ll become feeding tube dependent. So I have an endoscopy scheduled for Friday in Fargo.

Pray for answers and wisdom for what to do next as well as provision for the gas to get there and back.

Also we have about $700 in bills (no credit cards! Just like the water bill, car insurance etc that need to get paid soon. Many are already “late” so please continue to join us in prayer for these needs to be met. We have gotten little bits here and there over the last week and the car payment is almost complete from last month with $20 here and $50 there. Thank you to those who have felt led to give and have given!

12/10/2022

Update and a prayer request

Henry is just thriving. He’s growing and doing so well. We are seeing some more “autistic behaviors” and we found out that we are eligible for a lot of other benefits if we get the label… so we’re going back down that road. I feel better about doing so now that we know about the stroke when he was 2.5 and the metabolic disorder. I think these are the main causes of the troubles.

I’m doing better in someways. Worse in others. I have a little more energy and the chest pain and palpitations have improved significantly.

Now my stomach is giving me more grief. This has been a life long off and on problem. Fortunately I have a great GI doctor who is working hard to actually get to the bottom of things.

Which brings me to my specific prayer request. My esophagus muscles are not working properly. This was confirmed with a swallow study. There are a few causes - one requires sorta urgent surgery or it will get worse and I’ll become feeding tube dependent. So I have an endoscopy scheduled for Friday in Fargo.

Pray for answers and wisdom for what to do next as well as provision for the gas to get there and back.

Also we have about $700 in bills (no credit cards! Just like the water bill, car insurance etc that need to get paid soon. Many are already “late” so please continue to join us in prayer for these needs to be met. We have gotten little bits here and there over the last week and the car payment is almost complete from last month with $20 here and $50 there. Thank you to those who have felt led to give and have given!

02/10/2022

God just keeps providing.

We got to make memories with the kids going to the pumpkin patch this week and Twice complete strangers bought us groceries or paid a portion of our bill…

So I’m working so hard to stay in that place of faith and gratefulness as I sit in our reality today.

With my health and our income situation and the loss of some state benefits because we’ve exhausted the program I wrestle with anxiety about bills, about the future, about being a good enough mom when I’m just trying to not faint constantly.

God keeps answering our prayers. He keeps showing up. He keeps reminding us that He sees us. That he’s real and he’s trustworthy.

While no one is in the hospital currently our family is still in crisis and we ask you to keep praying. Pray for answers for my health and for rejuvenation.

Also please pray with us that our car insurance, car payment, utility bills, health insurance and medical expenses find a way to be paid.

If you feel led to help there are links in my profile and my venmo and cashapp are listed below or you are welcome to DM me.

Thank you for praying for us. We feel your prayers.

Venmo- Nicole-groenewald
Cashapp- thanxnicole

29/09/2022

I’m so frustrated with my body.

But I guess in large degree it’s frustration with all of the incredibly difficult circumstances of the last 6 months or so.

I don’t know how to help my body recover. If feel like what I need is to go to one of those rich people wilderness spas with yoga and vegetarian food, drink fresh pressed juice and nature walks… for like 6 months. Like pause life here and go take care of me.

I’m losing days with my kids. They’re growing and they want me to play with them and I want to so bad. But it makes me so sick. Just saying this is literally breaking my heart. The appointment with endocrinology can’t come fast enough. And even then it’s 6-12 months before I can expect some “normal” if the c word isn’t involved.

Right now I’m just really angry about it all. It’s ok to feel this way. I don’t have to stay here. I can move through the anger and fine hope again. But today… today I’m angry. I’m sad. I’m overwhelmed.

27/09/2022

Dr. Appointment day in Fargo again.

Henry: doing great! Lungs are healing. Heart swelling is going down. We’re getting off of one diuretic. Next follow up is at Mayo Clinic in November. 👍

I had a swollow study done and my esophagus is not functioning properly. Instead of pushing food down it’s like a toddler and plays with it a little while before the food eventually gets to my belly.

I got referred to endocrinology finally for my weird labs and growing thyroid nodules.

26/09/2022

Just a little update.

My (Nicole) health still continues to be a very serious struggle. I’m having a hard time getting doctors to take me seriously or even respond to messages.

It’s very hard to advocate for myself when feeding myself is a difficult chore.

Continue to pray for me and my healthcare team…

John has been doing an amazing job transitioning into the role of doing all the things while i vegetable. He’s also finally started the TikTok account he’s been talking about for over a month.

God continues to see us as the crisis is not over and several anonymous donors have sent us money and it’s always just enough to get gas to get to the next dr appointment. He continues to show us that he’s in this terrible mess with us.

I don’t know what happened but some of our state benefits were stopped this month. I have an interview Thursday to hopefully get it all fixed but we’ve had an extra hard time getting food on the table and gas in the tank. But God keeps showing up.

Thank you for your prayers and for those that have given and sent messages of encouragement thank you. We see you and can’t demonstrate our gratitude enough!

https://www.tiktok.com/?_t=8W1BzEed5O2&_r=1

24 Followers, 16 Following, 6 Likes - Watch awesome short videos created by Gaming with John G

20/09/2022

The hits just keep coming. I don’t know how much more stress my body can take. This year sucks.

Sookie lost a lot of weight while we were gone at Mayo Clinic.

We got him into the vet today and he has advanced stage kidney disease.

So we’re preparing ourselves to say goodbye and working on coming up with the funds to allow him a peaceful painless goodbye.

Please continue to pray for our family. I’m reluctant to post how much we struggling because it feels like I’m just whining but we’re really having a rough time and my health is a reflection of that I’m not doing well. I see the doctor tomorrow for some blood work.

Pray for peace and healing and for God to feel near through all these trials.

20/09/2022

I’m just a spoonie all out of spoons.

18/09/2022

Meal planning…

Working on getting better at meal planning and making home cooked meals. One way we are working to save money is making our own breads with freshly milled grains. I love my grain mill!

My health is still pretty poor after all the stress of the last 6 weeks so these are all pretty simple with a few that I plan to make a large batch and freeze half for an emergency meal.

I noticed my feed is showing a lot of other moms getting the meal planners back out. How about you? What’s on your meal plan? Do you have a family favorite?

17/09/2022

Our family has grown. Priorities have shifted and since it feels like a brand new beginning we began to feel like we’ve outgrown our previous mission statement.

Does your family have a mission statement? Care to share?

16/09/2022

We are so happy to be home. Today we caught up on sleep, Henry slept 12 hours last night!! (Thank you for your prayers!)

So between naps when we get little bursts of energy we have been unpacking the bags and boxes and planning the moving forward part.

More on the moving forward part soon. But for now we’re just taking it one step at a time. The main objective now is for all of use to rest and recover from essentially 6 weeks of chaos.

Thank you for your prayers for rest - please continue to pray. Also pray for wisdom as we work out what the future looks like.

15/09/2022

Headed to Fargo for a follow up

14/09/2022

Today is new beginning.

We are taking the day to rest, process, reconnect.

God is undoing us in some pretty intense ways. Nothing we are quite ready to share publicly just yet, but please continue to keep us in your prayers.

Pray for hearts and minds to heal. That the gospel remains central to our healing. Pray for vision and clarity. Pray for open, honest communication.

We expect to share at least some of what we are processing on our first podcast back. Next Tuesday at 8:00 pm CST.

14/09/2022

We’re home!!

thank you Missie for the super awesome welcoming!!

10/09/2022

We did it! We have been chest tube free for 48 hours. We’re off all IV meds and his lungs look so good! We also got to chat with genetics and his heartnup supplements were bumped up a little bit because his tryptophan and several other amino acids have been significantly low.

Over the weekend we’re just hanging out to be sure he doesn’t pull any more surprises and we’re getting kicked out Monday!

He played so hard with his mini today!

We have been so thankful and blessed by how many of you have sponsored puzzle pieces. I need to double check my list at home to be sure we’re not missing any but I’m pretty sure we’re at 213 puzzle pieces sponsored! THANK YOU!!

I have one tiny request. Henry got a few cards for his birthday this year and they brought him so much joy. We are finally transitioning to a big boy bed when we get home and redoing his room a bit (organizing toys etc) and I would love to hang a string of cards around his room with words of prayers, bible verses and maybe some drawings from friends and family.

If you’d like to send us a card dm me for the address. I think it would be so cool for him@to come home to a pile of happy mail. (And us too because I know there’s a large stack of scary bills waiting for me 😱)

Thanks again to everyone who has been praying and encouraging us and supporting us. We are so blessed by our community of people! We love you all so much!!

08/09/2022

This moment made my heart so full as they gave wa hugs and kisses. Elle leaned on Henry’s owie. He set a gentle boundary and she respected it!

Hopefully these two can be reunited soon. Separation count 23 day in the hospital.

04/09/2022

Day 20 update…

Ugh! Has it really been 20 days? The last few days have continued with the back and forth over the fluid in his chest. It goes down and then returns. Today they may pull the chest tube. He might go back into surgery to reposition it, or maybe to place a larger tube. The chest tube has had about 10 ml’s over the last few days (2 teaspoons) but the chest X-ray shows there’s still fluid in there.

We are about to have an ultrasound to see if that gives us a little insight.

My mom will be here in a few hours!! I will get to sleep in a real bed at the hotel and spend more time with Elle and John for a few days.

John’s birthday is Thursday. I have a few little surprises up my sleeve for him.

Praises:
Last time I posted I said I needed encouragement and the nurse came in that night and just said exactly the things my heart needed to hear that night.

Also I asked for prayer for Henry’s lungs to dry up and while we are still battling this, it is better and he has been more comfortable and we’ve even been able to explore some other play rooms here (shown in the picture)

Prayer Requests:

Financial provision We still need to make our car payment for last month, get gas, and we need to get diapers and get some groceries. You can donate at http://givesendgo.com/Heartherohenry or via cashapp, Venmo, or PayPal (DM for a link if needed)

For wisdom for the doctors about how to best support Henry while he heals. And that our genetics specialists is reachable Tuesday for some insight into some odd labs

His right lung heals quickly

John feels loved, valued and important on his birthday - he has especially struggled with this hospital stay.

01/09/2022

Stories aren’t working today for some reason… so buckle up for day 17 update.

The chest tube plugged up and stopped draining but the chest X-ray showed growing fluid accumulation. They tried to flush it yesterday but no luck.

So today they took him back into surgery and pulled the old chest tube and put a new one in. It’s draining beautifully now.

Common questions:
Is it a chylous effusion? No, they’ve checked the fluid and it is just serous drainage. There’s no triglycerides or the other markers that indicate chyle.

How do they stop the fluid? The body is Healing from a traumatic open heart surgery. What he went through was a really big deal. His immune system is responding the way it’s supposed to after trauma and trying to heal. The fluid is a by- product of that. We have to let the body heal the way it wants to, but obviously that fluid build up compromises lung function. So while he heals we have the chest tube draining the fluid and he’s on TONS of diuretics to reduce the amount of fluid going to the lung. Eventually it’s stop. Usually it stops much faster. Henry has always done things his own way. This is no exception.

When will you go home? We have no idea. He’s on IV medications and the chest tube to keep him stable. Until we can safely get rid of those things we are here.

Praises:
Our pup had an infected tooth that abcessed this week and our neighbor who is caring for our pets took him to the vet multiple times this week and God provided the funds we needed for that.

Almost all our bills this last month have been paid on time. I literally don’t know how it happens but God just keeps providing in crazy ways!

Prayer requests:
The fluid stops draining into the chest cavity and we’re able to safely pull the chest tube.

Continued financial provision

Sleep for all of us. Elle has struggled with missing me and she hasn’t been sleeping great… the hospital isn’t the best place for sleep so Henry and I also continue to be exhausted.

Encouragement. John and I are emotionally and spiritually growing weary with this long journey. We’ve barely seen each other for 2 weeks and we’re just feeling done. Pray for refreshment for our souls.