The Friedman Fam Update!

Here is a general update from the Friedman Fam!

I have been gone the last three days. I worked at the hospital working night shift. It was a bit of an adjustment because I haven’t worked night shift since April but I am reminded of how much I love working some dayshift and some night shift because I truly believe that there are benefits to both shifts.

Yesterday in between my shifts, I stayed at the super eight in town. My hospital is AWESOME and they cover most of the hotel cost to offer a place for employees to quarantine from their families when they are taking care of COVID-19 patients. 

It was so nice to get some uninterrupted sleep during the day and not have to worry about falling asleep on the way home. I have driven home several times now after working night shift and I haven’t had any issues with being too tired to drive. This is such a relief because that was a concern of mine when considering taking a new job and commuting.

I’m definitely getting my footing again after being thrown into a totally new environment with such a steep learning curve it. Some days I wonder how I ever thought I was actually qualified to teach nursing students because I feel so lost myself. My eyes are now open to how small my world used to be. It truly taught me how much I don’t know.

Now that I am working up to my full scope, I have a far higher job satisfaction (we will just leave it at that) and as one of my very first nursing instructors put it I “feel like a nurse” again.

Once again I am reminded of how terrifying but rewarding it was to totally dive headfirst out of my comfort zone into something brand new and I 10 out of 10 recommend it to anyone who is considering it.

Craig has been working on the farm. Nothing really new there. They are busy and he’s working more weekends than usual. He usually ends up hanging out at my moms for supper when I’m gone at work. We are so thankful that my mom is able to support us in that way and I’m also grateful for the relationship that Craig and my mom have.

Gannon is doing wonderful since his hospital stay. We got some of the test results back from the biopsies that they did which showed Gannon has a sensitivity to lactose which isn’t surprising at all.

We are still working on getting him into physical therapy which has been a frustrating process. I’m working to see how we can ease the transition of care from children’s of Wisconsin in Milwaukee to University of Iowa. A lot of these phone calls need to be made during business hours which is hard to do when I’m sleeping for three days in a row and I usually have to leave a voicemail for them to call me back. I feel like Gannon is walking is getting better every day which is encouraging. That boy, he just absolutely loves to be outside and will cry if I let Betsy outside without him.

Carver becomes a pickier eater by the day and this morning refuseD to eat the “peel” on his pop tart. He is growing up so much and has matured by leaps and bounds the past few months.

I got a tagalong bike which essentially turns any bike into a tandem bike for a kiddo and I can’t wait to try it out this weekend with him. Even though Carver is the rougher and tougher of the two boys, he definitely is more hesitant to try new things and more scared and cautious than Gannon.

We are so excited. Craig‘s sister Kelly works in retail and was able to snag us a pool! We will fill it up and have it ready for this weekend! I have no idea what it takes to maintain a pool so it’ll be a learning process for all of us. We’ve been spending as much time as possible outside every single day and we absolutely love summer.

That’s all I have for you today. We have a long weekend of family time together and I’m so excited to see the boys again after I’ve been gone! I also get to watch my niece Georgia tomorrow. My sister Kelli is a nurse as well and she works weekend package (works every weekend for a higher pay rate) I usually get to see Georgia on the weekends when I watch her or at my moms house.

My other sister Kayla is on her way to my moms house as well so I get to see her and her son Jasper this weekend. She invited me to go hiking with her in Decorah today but I think I’m gonna pull the “I just worked night shift” card because she said she wants to do 4 miles! I sure do love some quality sister time but I just don’t think I can bring myself to hike four miles today. You can follow her at Pin’s Needles on all social media platforms.

Want to support The Pink Shoelaces?
Buy me a coffee!
https://www.buymeacoffee.com/Pinkshoelaces

We’ve Been Faking It.

When news of Rachel and Dave Hollis’s divorce hit my news feed I literally had to stop what I was doing, go sit in another room, and read her words over and over. I was in SHOCK. I baffled my family with how sincerely this announcement shook me to my core and knocked the wind out of me for a good 30 minutes.

I am a Hollis company fan. I’ve read every one of Rachel and now Dave’s books, I’ve listened to hours of their podcast, I’m guilty of turning on one of their marriage counseling podcasts when Craig was around so I could pretend we were listening together. I’ve priced out tickets to their spend women’s weekend or Rise conference, I’ve cooked breakfast while listening to their morning live shows every day at 9 am. I took Rachel’s advice to heart and felt like I had a big sister offering advice and relating what I was going through as a young mom and through a few tough years of marriage. I have start today journals and I’ll try every day to move my body and drink half my weight in water.

if you follow the Hollis Co, you know what I’m talking about. If you have no idea what I typed in the above paragraph, I’ll summarize: I’m a hard core Rachel and Dave Hollis fan. But more than that, I totally bought into their marriage counseling podcast. I believed that if we worked hard enough, we too could have an exceptional marriage JUST LIKE Rachel and Dave. I planned the date nights, I took their advice on co dependency to heart and scheduled time apart, I did all of the things as Rachel would say.

But when things got hard in our marriage or life in general, when I turned to Rachel and Dave’s advice, I was told “choose joy” and “you’re not trying hard enough if you aren’t happy” and “you’ll never lose weight if you won’t commit to moving your body and drinking the water.” They also made me believe that if I was putting in the work and not getting results, I wasn’t and we weren’t trying hard enough. They made me feel inferior with their advice when I was struggling because look at them – they made it look so damn easy when obviously, they were struggling much worse than Craig and I ever have.

Because LOOK! Rachel and Dave our in the work and they made it happen and they have that exceptional marriage. YOU GUYS – that’s literally the tag line of their marriage counseling/advice podcast!!

So yes, I was SHOOK. I was upset and I know that I don’t have the right to be. I’m just some girl in Iowa, who I am I to be upset with some couple in Texas for ending their marriage?

But here’s what gets me: if I wasn’t perfectly happy, I wasn’t choosing joy. They told me I wasn’t trying hard enough. They told me to work harder at it and they weren’t.

YOU GUYS!! They SOLD OUT a marriage/couples conference for $1800 a ticket!! And then in their announcement they tell us they’ve been contemplating this for YEARS!?!

But I also get it. These pictures came up on my timeline tonight:

Would you believe that Craig and I were at such a tough spot in our marriage when these photos were taken? That we barely spoke to each other unless we were fighting? That Craig took off work in the middle of the day when I told him to meet me at the marriage counselors office or I was leaving?

That doesn’t make for good captions on pictures.

Truth bomb right? That was a rough summer and while we were both floundering with our own version of post partum depression and my undiagnosed anxiety and body dysmorphic disorder, we were trying extra hard to convince the world we were madly in love.

So I get it. I get that marriage is hard. Rachel and Dave’s announcement made me look deeply into how I was portraying myself online and made me question if I was duping my readers.

So while I’m still confused and feel as though my own parents told me they were getting a divorce, I get it and I know how it feels to magnify the good on social media and minimize the bad. I know how it feels to try twice as hard to prove that everything is perfect to make up for the fact that you’re in marriage counseling and wondering if you’ll make it to your 2 year anniversary while posting photos like this online:

That being said, thank you to my wonderful and goofy husband for letting me share this with the world. Thank you for working with the unmedicated version of Kalissa’s anxiety to get to where we are today almost celebrating 5 years of an imperfect marriage.

This is the very first time I’ve publicly admitted that Craig and I have been in marriage counseling and we can testify to how much counseling in general can improve a marriage. We haven’t gone together since that summer but I still continue to go to my own counselor and still feel it benefits our relationship greatly. If you’re struggling, know you aren’t alone.

I don’t claim to be an expert in the subject matter, but if your marriage feels hard, you’re right. It is hard. If you feel like you’re working extra hard to prove your marriage on social media, I’ve done that before too. If you feel like giving up, I’ve felt that before too. You aren’t alone and apparently, neither are Rachel and Dave.

Want to support The Pink Shoelaces?
Buy me a coffee!
https://www.buymeacoffee.com/Pinkshoelaces

Feeling the Love ?

I had tears in my eyes opening my mailbox today. People have been so so generous to our family through our ups and downs in searching for a diagnosis for our sweet Gannon.

We were nominated to receive a monetary gift from a local non-profit called Kickin’ it Forward. I wanted to share about their mission on the blog today:

Kickin It Forward, Inc. is a foundation providing financial relief to families facing medical emergencies within the community. Our goal is to use quality family activities, outreach, and public involvement to best serve the needs of families in the area.

In June of 2018, 7-year-old Kort Steffens endured a UTV accident that caused serious soft tissue damage to his arm and hand. He spent 18 days in Mayo hospital, underwent 6 surgeries, and months of physical therapy that ultimately conserved the function of his hand. Friends, family, and the community gathered together to support the Steffens family with a benefit that helped Kort’s family tremendously with medical bills. 

This year, Kort’s family and friends have gathered together to repurpose the previously named Kickin’ It For Kort benefit and introduce the Kickin’ It Forward Foundation to help other families in need. This non-profit foundation will raise money to help families facing medical emergencies.  Fundraiser plans are underway to have a kickball tournament for adults and youth, silent auction and raffle, along with kid and adult games and activities. 

I remember when we first went to the first ever Kickin’ it for Kourt fundraiser – it was so much fun! I never dreamed that just a few years later our family would be benefiting from their non profit! We are on the first responders with their family and we are so thankful for the wonderful work they are doing in the community for families struggling with medical issues.

I wanted to share their website here if you feel so inclined to donate to their cause, please do!

https://kickinitforward.wixsite.com/-inc/about-us

We also have a local family who has sent us several cards in the mail for Gannon, each with a “no thank you necessary” note and words of encouragement for Gannon ❤️ You know who you are, your gifts are so appreciated.

Yesterday’s blog post has nearly gone viral and while I intended to reach out to the local parks and rec board, so many people have done so on Carver’s behalf. I posted an update yesterday afternoon:

UPDATE FROM THIS MORNING’s BLOG POST:

Wow – so many people have reached out and today’s blog post has actually gone a little bit viral! Carver is just fine – we are all blown away with the response. SO MANY people have reached out to the board/parks and rec on Carver’s behalf and this is absolutely being dealt with!

I have no ill words for anyone – this was a pure accident. The bike trail is beautiful, if Craig wasn’t chopping hay today you can bet we would be back on that same bike trail. It’s the perfect distance, it has so many fun stops on the way, we will be just more careful. Please don’t speak ill of the parks and rec board/city council. They are actively addressing our (and many of your) concerns. This is no ones fault and a learning experience! Hopefully something good can come out of this!

If you have no idea what I’m talking about, check out yesterday’s blog post about Carver’s near drowning incident:

Between the check in the mail, the messages in my inbox about the incident, the sweet sweet card, we are feeling the love ❤️ Thank you all for being a part of my people and community!

Oh – and my mom made a jello cake for Craig – that was super sweet – thanks mom!

Like what you read? Buy me a coffee!
https://www.buymeacoffee.com/Pinkshoelaces

A Wonderful Day and a Terrible Incident

We had such a wonderful day. It was so beautiful out, the outside got tidied up, I got to mow the lawn, but we had a terrible incident that has us all squeezing each other a little tighter tonight and Carver between me and Craig as I type this.

To make a very long story short, we decided to travel to Fredericksburg, a town about 15 minutes from our house. They have a beautiful bike trail that winds through the woods, along the river, through the parks, there is plenty of sun and plenty of shade. Everything is fairly flat and has plenty of places to stop and relax. It was our first time on the trail although Craig went there when he was a little kid.

The trail goes under several bridges, we stopped to toss rocks in the water, we waded out into the water, the boys LOVED it and the water was so shallow.

We stopped at such a nice park. There were things to do for all ages and I even was able to play on the equipment with Carver. Usually it’s pretty cramped for my big butt but not this park!

As we continued on the trail we came across another area on the very end of the trail. It looked like this:

Some water was flowing over the top but it wasn’t anything of a strong current. We were so excited to get out and explore like we had at every other bridge. I was carrying Gannon and I took two steps onto the wet part of the bridge and immediately knew it was slippery and turned around to warn the boys.

Craig and I have spent the rest of the day digesting what happened next and we still aren’t sure of the order of events.

I didn’t hear a splash, I just saw Craig teaching into the water and yelled “CARVER!” Carver was no where to be seen in the dark brown water. Craig pulled his hand out of the water when I realized he didn’t have Carver yet. He reached in again, deep enough that the chest of his shirt was soaked, and after the longest five seconds of our lives, he pulled out a sopping wet Carver.

where he fell in

He had fallen into an eddy in which was in what was perceived to be a fairly shallow creek. It was fairly shallow literally everywhere else, we could see the bottom just fine.. but where Carver fell. After we collected ourselves, Craig stuck a long stick into the area where Carver fell in and guessed it to be about 4 or 5 feet deep. Craig explained why that was such a dangerous place for him to fall in:

Even though it wasn’t a big dam, it was still considered a low head dam that could have so easily taken Carver.

Thankfully, Carver held his breath. I have no idea how. He didn’t cough or sputter once.

We have run through what we thought or what happened all afternoon. We are so thankful Craig was right there. We have exhausted all what ifs. Craig said he could feel Carver caught in the current and headed for the bottom face first. He caught his leg in the first attempt to fish him out, He finally caught him by his t shirt on the second grab.

We think he either slipped in or thought it was shallow like it was on the other side. He tells us he doesn’t want to talk about it. My mom said to him “Carver I heard you fell in the water” and he says “yeah, I heard about that.”

I’ll just never forget that feeling of staring into brown water and knowing my son was in there but could not see him at all. Or when Craig came up empty handed after the first reach. Ugh.

So we are all squeezing each other a little tighter tonight and definitely felt like we were being watched over.

And he has earned a sleepover in our room. many lessons learned today. We still love and plan on going back to that bike trail but maybe just avoid the cemented bridge at the end!

MRI Clarification and Boring Home Life

We’ve had a refreshingly NORMAL and boring day!

I had a reassuring chat with Gannon’s neuro surgery team – I’m going to explain this in kind of a weird way so bear with me.

Spinal cord: horses tail
Fibrolipoma: piece of gum on the wall of the stall

Once in awhile the horses tail might get stuck in the gum and cause an issue but for the most part the horse doesn’t even notice. BUT for a very small percentage of horses, it does cause an issue (tethered cord syndrome) and the gum needs to be removed from the wall of the stall. But honestly, it’s just a tiny piece of gum and could it really cause that much trouble? There are probably a lot of people in the world who have gum on the side of their stalls and don’t even know about it but there are also people who have gone on the side of their stalls and it causes a lot of entanglement.

Make sense? So we have the telehealth conference call on June 25th with neurosurgery to discuss whether or not the gum needs to be removed off of the stall (ha) or whether or not it is contributing to anything.

Then back to Milwaukee for a neurology appointment/get blood drawn for genetics/get Botox in the bum on June 30th. Then another big visit with the muscular dystrophy, neurogenetics, and a couple other people on August 10th.

For now, we will continue in Milwaukee until we have a diagnosis and then transition care back to the University of Iowa. It’s a long trek but we feel like we are getting places we didn’t with U of I. In their defense, neurology wasn’t even like a possibility/thought in anyone’s mind until the past month but Children’s is really making it happen.

I work tonight and tomorrow night overnight. I haven’t worked an overnight since April so wish me luck! I got a hotel room (deeply discounted for hospital employees) for tomorrow to stay in town and sleep. Lots of driving – lots of time away from home.

We had SUCH a normal day, it was so great. The boys played outside all morning (no clothes required appearently) and I watered all my flowers that Craig tried to kill while I was gone.

Milwaukee Day 4: HOME + MRI Results

I know you guys have been waiting, I don’t have much to offer.

Gannon has a fibro lipoma of the filmum terminale. If you google it, it’s associated with kids with spina bifida and tethered Cord syndrome. Maybe Gannon has a form of that, maybe not.

This is an abnormality of his spinal cord. It could get bigger and cause more problems as he gets older. This could mean something, this could be nothing. This could be the answer to all of our questions – this could explain every single one of Gannon’s symptoms. It could be totally benign. We were supposed to find out today but we didn’t.

Gannon has anal achalasia – this could be totally explained by his fibro lipoma or it could be totally unrelated.

Gannon could have a genetic condition. Doctors are leaning more towards Ehlers Danlos syndrome and less toward Prune Belly Syndrome but we won’t know until we consult genetics which also didn’t happen today. His distended bladder, undescended testicles, and paper thin abdominal muscles could be prune belly syndrome or totally explained by the fibro lipoma.

Gannon may need a laminectomy (spinal surgery) to cure/treat his fibro lipoma, he may not. It could be nothing.

Gannon’s low muscle tone cannot get better.
Gannon can gain strength in his muscle though through physical therapy but you can’t change muscle tone.

Gannon is being referred to a muscular dystrophy clinic. This could just mean he is being referred to a clinic who specialized in muscle disorders, this could mean they need to rule out muscular dystrophy.

Gannon is being referred to a neurosurgeon and a geneticist, all in the muscular dystrophy clinic.

It’s all up in the air, the ride home from Milwaukee was the longest 4 hours of my life, Gannon threw up on the way home, we both cried on the way home, we were both so sick of being gone. We still didn’t get a diagnosis. Only more questions, now thrown into the outpatient world of coordinating appointments.

Someone once told me chase the therapies, not the diagnosis. We will start physical therapy ASAP.

The most reassuring conversation I will take away from this week was with one of the residents caring for Gannon.

“We see a lot of kids who are perfectly healthy and parents INSIST there is something wrong with them but they have a perfectly healthy normal child. This is not that. There is an answer to be found. This isn’t just coincidence. Your concerns are valid. Something is wrong but it isn’t life threatening today.”

That’s what I know which isn’t much. I’ll update when I know more.

Have a good night friends!