Believin’ for Ethyn

15/06/2024

Mister Ethyn turned 3 months on Wednesday! Love this little guy so much! He’s such a beam of sunshine. I couldn’t imagine life without him!

14/06/2024

Mister Ethyn celebrated getting his casts off by going to the pool for the first time! Yay! I would say he enjoyed it, or at least didn’t complain about it. Here’s to many more days of lazy pool days.

13/06/2024

Our community is AMAZING. I love this business because I’ve been able to find cute things for my kiddos over the years, and I’ve loved watching how they support the community around them. This post made our week! After getting some difficult news this week, it was a bright spot for us.

If you can support this business, that would be amazing!

https://www.facebook.com/share/p/V9BK6PBw5Ag1ZGEJ/?mibextid=WC7FNe

Late post-

I met Baby Ethyn the other day (Seriously, how CUTE is he)!!! I also had a lovely chat with his mom. She was glowing with happiness and love for her baby, and it was so sweet to see.

As a mom of a kid with special challenges myself, I somehow felt drawn to this customers empathic heart.

I felt how much she loved her son and how patient and strong she was. She was absolutely glowing, and despite all her additional worries and challenges, you couldn't see it. She was just too in love with this baby to be sad.

We see a lot of wonderful parents in our store, but there is this extra warm kindness that beams from Moms of kids who have additional struggles in life. They seem to view the world and others with less judgement maybe? I can'tquite place it. It is just something I like, FEEL..

I have noticed this for years in mothers of kids with any type of challenge, even if it is a common challenge like Adhd or a rare challenge like my son has, which is Coprololia Tourette Syndrome.

These moms of nuerodivergent kids who are also sweet, intelligent and awesome kids are truly the sweetest customers I have ever had the pleasure to meet. Moms with preemies or moms of kids with physical challenges also seem more empathic to me maybe....

These are the moms I enjoy having short conversations with when time allows. They talk about things that matter and are very good listeners. They are my people.

Maybe their hearts have been softened somehow in order to offer their sweet kids the best version of themselves, and the strength to shelter them from cruelty or judgement.

I asked if I could share Ethyn's page that she created so you can follow his journey with Spinabifida. 🩷

You are amazing Baby Ethyn! We look forward to watching your journey! Stay strong sweet boy..😁
https://www.facebook.com/profile.php?id=61553118025124&mibextid=ZbWKwL

12/06/2024

PT came over today. She is wondering if Ethyn’s left leg might be deformed. It’s always been shaped differently than his other leg, but we chalked it up to his broken femur, but that should be all healed by now.

We are asking questions to the different teams to see what needs to happen next, but if it is deformed, that may mean he may not be able to walk. Granted we heard this from ortho in Seattle, but PT had initially given us hope that he could walk.

Two steps forward, one step back. I won’t give up on him. He’s got a whole life ahead of him, and I will fight to give him every chance at a somewhat normal life if I can. So for now, we wait, we pray, and we work hard in the meantime.

12/06/2024

Someone is so dedicated to becoming an amazing snowboarder like daddy, that they wear their snowboard almost all day long!

Jk! 🤪

No, he does look like a cute, tiny snowboarder though. Boots and braces, here we are! We get to wear these for the foreseeable future, but hey, at least he can take full baths and go swimming now. We are all glad the casts are off and gone for now.

07/06/2024

Things have been quieter this week, which has been nice. Ethyn attended his first wedding this last weekend and got loved on by lots of family. He goes in to get his casts removed on Tuesday, and gets fitted for boots and braces. Maybe he’ll become a snowboarder like his daddy. lol.

We had a meeting with the genetics team after a mitochondrial marker came up in both his and my dna, but at this point we don’t see anything of concern as what we initially thought, and we will keep an eye on his heart in the meantime as there were a couple of things noted in his echocardiogram at the hospital about his heart, but it wasn’t concerning at this time.

We decided to try breastfeeding again! It hurts so bad, but I’m powering through because I know I will toughen up eventually. He seems to be gaining, and he’s definitely less urpy since he isn’t taking as much formula, and I’m now producing more milk than I was with just pumping.

Happy weekend to you all! Enjoy the nice weather and rest!

29/05/2024

Well that was discouraging. We had an appointment with another orthopedic surgeon today after they gave us a little hope they might be able to do something about his hip dysplasia, which we had already been told there was nothing they could do for his hips by a couple of doctors, so I wasn’t expecting a lot, but was kind of hopeful.

Instead, they kind of hurt some of my hope of him walking. They said since he doesn’t have abductors, he may only be able to walk with assistance or not at all. All this time we’ve had therapists and surgeons giving us so much hope that he would be able to walk, and then this. Granted this is just one voice in the many, but it still was a slap to the face, making me remember my son is disabled, he was born with difficulties, and his future is still up in the air as to whether he will be able to function.

Most of the time, I see a happy, healthy, thriving, normal baby, and then there’s times like this, or times when we get the pitied stare, or times when people asked what happened to his head or legs, that it makes me hug my little guy tighter and wish I could take it all away and reminds me of the spina bifida.

So for the moment, I grieve, but I’ll continue hoping and working with the little guy to help him as much as I can.

27/05/2024

Someone is having fun on this Memorial Day! 🤣💙 the girls are having a blast being a little mommy to him, and this momma is enjoying watching them playing together.

26/05/2024

I’ve been producing so much milk, I was able to donate 700 oz to a local mom that just had a baby and was struggling with milk supply. Coincidentally, she had heard of our story through the grapevine- small world! Ethyn is a popular little guy, and I’m so proud of where we started and where we are now and where we are going. God has been so good to us.

22/05/2024

Casting number 7 in the books! They cut his heel cords today, and they wouldn’t let me go back with him, which was really hard, but apparently he did amazing and hardly made a noise, mostly because he can’t feel down that far.

We were supposed to get a three week break, but Spencer noticed when we got home that the cast was already moving and his toes are losing circulation when laying down, so I have a feeling we will have to go straight back to Spokane. 😭😭😭

Ortho also thinks that we may be able to do boots and braces instead of the AFO braces, which means it’s not as bad as he initially thought, and that means I can give little guy full baths and take him swimming! Our bath routine so far has been a learning curve, but I think I’ve got a good system down without getting the casts wet.

We also have appointments for him on Thursday and Friday, with his pediatrician, physical therapist, and feeding therapist, so we are BUSY. But little Ethyn is growing good, and is right on his growth curve both physically and mentally, so this momma is proud.

15/05/2024

Casting number 6 is in the books! His right leg is looking amazing! His left leg not so much, so they will be cutting his heel cord next week. Still not sure if he can feel anything below the knees, at least from what we can tell when he’s briefly out of his casts, but we are hoping his nerves continue to heal so he will be able to eventually feel his feet.

For now we are just plugging away at his routine appointments and physical therapy and just regular baby life. We are LOVING all the baby smiles daily now, which means neurologically he seems to be sound.

12/05/2024

Someone is two months today, on Mothers Day! This little boy is surpassing everything the doctors doubted he would do. He’s alive, he’s thriving, he’s growing, he’s moving his legs, he’s able to p*e and p**p, he’s passing his milestones neurologically, he’s breathing on his own, he’s eating, and there’s so much hope he will be able to walk one day. God has this little guy in His hands.

09/05/2024

It’s been a busy week! PT on Monday, casting in Spokane on Tuesday, doctors appointments for his sisters on Wednesday, and lots of phone calls scheduled for Thursday to SSI for disability paperwork. Then Monday we start over with new appointments. I’m looking forward to a break this weekend.

Little guy is doing amazing though. He was 11 pounds on Tuesday, so he’s gaining as he should. Ortho is still trying to move his left ankle more, and it’s proving to be difficult, but he thinks he can fix it by two weeks, and then we will do his heel cuts to stretch out his heels in the back and hopefully get some movement in his feet.

PT has us doing many exercises, but was really encouraged by how much movement he was getting in his neck now vs the last time she saw him. The girls loved being able to help with therapy for their brother and jumped right in with stuffies for him to hold as part of his therapy.

Life is full and busy at the moment, but I look at this little guy everyday and know it’s so worth it. He’s our little miracle, and I wouldn’t have it any other way.

01/05/2024

The harsh reality of having a child with special needs and their siblings is the siblings sometimes are pushed to the side without realizing it.

The last week or so, my middle kiddo has been “sick”. Everyday it’s some new malady; stomach flu, earache, leg pain, sore throat, etc. Yesterday it was everything all at once. She also kept complaining of a broken heart.

Last night it hit me- she was jealous of her brother and the attention he got. Sure enough, I sat her down this morning and asked her if she was jealous that her brother got to go to all the doctors appointments, and the dams broke. She sobbed as she explained she was heartbroken her brother got more cuddles than she did and that he got all the attention at doctors appointments.

Ugh, this momma heart broke for her. I felt awful and hugged her tight, promising she could come to me with requests for cuddles and she would get them. We also had a good talk about how Ethyn’s appointments aren’t fun and games, that they hurt him a lot sometimes, and it isn’t comfortable for him, and she should be happy she’s healthy and doesn’t have to go to a lot of appointments like he does.

Having a new baby without special needs is already a huge adjustment, but it’s much harder with a special needs baby. I’m just glad we were able to have a heart to heart and validate her feelings.

01/05/2024

Baby spam!

This was one of the first outfits I allowed myself to buy after we found out there might be something wrong and after bleeding for months. I didn’t get many things during my pregnancy for fear we wouldn’t be bringing him home, but I saved a few special outfits and prayed one day he would be able to wear them. I’m so grateful my baby boy is home and wearing the cute outfit I picked out for him.

Today was week four of casting. Super quick trip to Spokane and back. The doctor said we may be looking closer to 8 weeks of casting rather than the initial 6 we thought at first, because his feet are having a hard time moving the direction they’re supposed to go. They are also looking at detethering his heels sooner than they thought, a process where they cut the backs of his ankles to allow the feet to move properly. Right now they’re very tight and are keeping the feet from moving much at all. Fortunately Ethyn doesn’t appear to have feeling in that area, so hopefully it won’t hurt him, but it’s still sad to think about.

Thankfully we have a couple of free days, enough time to spend at home with my girls. Thanks to everyone for continued prayers! Someone brought us a meal yesterday so we would have a prepared meal for tonight after all the driving, and we were told we were on a prayer chain this morning before his casting. We appreciate every single one of you, especially all the prayers.

26/04/2024

Whew, today was a long one. Ethyn’s left cast slipped last night, but they said it could wait until his next appointment, and then when I woke him up this morning the cast had come completely off. After multiple calls into the early afternoon, I finally got a hold of someone, and they said to come in immediately.

So we packed up, left at 2, and got home after 10pm. It made for a very long day. I’m thankful his Nana was able to immediately come over and help on the long car ride there and back. I’m also thankful the hospital offered to pay for our gas- that helped a ton.

We have another long day tomorrow with multiple appointments not only for him, but our oldest as well. I’m definitely looking forward to the weekend when we can hopefully rest.

24/04/2024

Mister Ethyn had his third casting today! He slept through most of it. He also had his first chiropractor appointment with a specialist, and he was able to turn his head to the other side without straining! Then we had someone bring us dinner tonight after our long trip- a huge blessing. Now for some much needed rest for the next couple of days.

23/04/2024

The things you don’t think much about when you have a special needs child and many appointments. We are supposed to go to Spokane tomorrow for another set of casts for his clubbed feet, but our middle kiddo came down with a fever tonight… things have been tight without me working and Spencer having taken so much time off, so he couldn’t feasibly take another day off to stay home with a sick kiddo. But God is good, and we had some donations recently given to us that will cover him taking a day off tomorrow so I can run little guy up to Spokane and Spencer can stay home with the girls and nurse our daughter back to health.

Now I pray that no one else gets sick or that little Ethyn doesn’t get it.

18/04/2024

We were going to get a tongue tie fixed today due to nursing issues since birth, but the dentist took a look and said that clipping the posterior ties could be traumatic and might not fix our issues, so we opted out of clipping his tongue. We also know some of his problems with pulling milk while breastfeeding could be neurological, and I didn’t want to put Ethyn through all of that and find out it wouldn’t work.

So exclusively pumping it is. I definitely produce enough for this little guy, and already have 200 oz more than what he needs saved, and we are still fortifying my breast milk, so he’s all set. I really hope we can eventually go to just pumped breast milk because formula doesn’t set well with his tummy, but for now this is working.

I find a peace in pumping my milk for him, because I can see how much he’s getting and I know I’m keeping up my supply to provide for him, so in a way I’m glad we didn’t clip anything.

In other news, little guy is gaining like a champ! He was over 9lbs at his last weigh in, and the doctors are all pleased with his growth.

17/04/2024

Little guy had his second casting today for clubbed feet. He slept through the whole procedure- that’s how chill he is.

Yesterday he had his first evaluation with early intervention PT, and we learned some exercises we can do for helping his range in his neck and back. He really favors one side of his head, mostly because he has a shunt and had to lay in a certain way for two weeks after his first surgery, so we have to work with him to turn his head other directions. We also will be seeing a specialist chiropractor next week and hopefully help little guy get some relief.

The rest of this week is filled with more appointments, so our life is busy and full, but we are more than willing to do anything to help our son.

Here’s a picture of our little fighter in full fight mode. He’s so much stronger than we ever thought possible.

15/04/2024

Someone turned a month old a couple of days ago! (Third child syndrome- 🤪🤪🤪)

We are:
- 8 lbs 9 oz and gaining weight daily
- still wearing newborn clothes- the longest any of my kiddos have worn them
- very alert when awake
- getting loved on by lots of people, but mostly my big sisters and grandmas

Each day is such a blessing with this little guy. God has performed such an amazing miracle, and I’m so glad I’m reminded each and every day how good He is.

10/04/2024

LOOOOOOOONG day today. Spokane and back for Ethyn’s ortho appointment. They went ahead and started his casts today, and he doesn’t seem too phased after all he’s been through, so I’m grateful for that. His sisters even got to help with the plaster, which was a lot of fun for them. I was happy they let them help with their little brother.

08/04/2024

Our church family is one of our biggest support systems we’ve had since we found out about Ethyn’s spina bifida diagnosis. We made it to church yesterday for the first time in months, and the outpouring of love and prayers and happy tears was amazing to see, and to know this little guy had been held up in prayer by so many people. He is seriously our little miracle.

We sang “Great is Thy Faithfulness” yesterday, amongst many other hymns, and singing those praises to God hit so different after what we’ve been through, because He truly is faithful. Despite everything, God placed this little baby in our arms and this little guy is defying the odds placed on him by doctors, and we pray his life can be a testimony to others as well.

All of your prayers are what helped keep us going. We know your prayers were heard, and our son is proof of that. Thank you from our part of the world to yours, from the bottom of our hearts.

Some people have asked how they can help, and we are still trying to figure out what that looks like. We have the meal train going by my friend Ashley, and we’ve already had some yummy food dropped off! If you feel like you can’t do the meal train right now, but would like to do a meal, Tuesdays are going to be hard for us for meals since we will be driving to Spokane and back for the unknown future, so either have meals dropped off on Mondays or even gift cards for restaurants would help as we travel with our kiddos every week. I’m still updating my registry as well with things we need as the need arises. And of course prayers always are needed for our little guy and our family as we continue on our journey.

Meal train:

https://mealtrain.com/8rvdln

Registry:

Tiffani Johnson& #39;s Baby Registry https://www.amazon.com/baby-reg/tiffani-johnson-march-2024-westrichland/1SN7EAOXBLRHB?ref_=cm_sw_r_apin_dp_P9Z6GQ8TKBTMW7XPSQJ3&language=en_US

06/04/2024

Happy Sabbath from our family! So glad to have all my kids together in one place.

05/04/2024

The last couple of days we are just existing. Doctors appointments, and sleeping, and cuddles, and homemade meals. And lots of Bluey.

We haven’t put back in his feeding tube because little guy is drinking most of his milk and gaining! Let’s pray that’s a trend and that we won’t ever need the tube again.

We start clubbed foot casting next week, and we have to drive to Spokane weekly for those appointments for the near future.

A dear friend of mine, Ashley, put together a meal train, so I’m posting the link here, and feel free to stop by and say a quick hello! Our home is currently chaotic, so excuse the mess if you stop by, but we will slowly but surely get back to a routine.

https://mealtrain.com/8rvdln

03/04/2024

And we are HOME. Ethyn did really amazing in the car, although literally five minutes from our house after our 4 hour drive, he yanked his feeding tube out. We see his pediatrician tomorrow, but he’s been drinking his full bottles today, so God willing she will be ok with us leaving it out for now.

There were many mixed feelings today. Mostly sweet, but sad too. It was hard to leave the Ronald McDonald house after being our sanctuary during the most difficult time of our lives. It was hard to leave behind friends who had become family while we were all going through the hardest times of our lives. It was hard to leave the area because it felt safe since the hospital and the doctors were right there.

But it was sweet. I got to go home and cuddle my whole family at the same time. I get to sleep in my own bed tonight. I get to have my little baby sleeping next to me in his bassinet. I get to have all my necessities in one place instead of in several different buildings here and there. I got to cuddle with my kitty cat who I haven’t seen in months. My girls got to talk to their brother and see his little personality and sing to him and tell him stories, just like they used to do when he was in my belly.

And as we drove over the pass, it all hit me suddenly. I know this will all take time to process and heal from, but we’ve literally been to hell and back during all this. We’ve been through the darkest and hardest times of our lives, and we are coming out of it stronger than we ever could have imagined. When I separate myself from our experience, it is unimaginable.

But now we are home. Now comes the real life. I keep telling Spencer that our mantra right now is to give ourselves grace. We don’t need that huge garden this year. It’s ok if we don’t spray for bugs this week, it can wait a week. Don’t worry about getting everything all unpacked and in its place right away, we can do it slowly. We don’t have to have things perfect right now, because being together as a family is as perfect as it gets.

01/04/2024

Guess what?!

DISCHARGED DAY IS HAPPENING WITH THE DOCTORS BLESSINGS! Yay! Sometime tomorrow we will be HOME! (We will be at the Ronald McDonald House tonight.)

Ethyn still is not gaining, but not losing either, so we are adding some extra calories to breast milk to help with that, and the doctors have seen how religious we are with making sure he gets enough intake that they feel comfortable with letting us go. Hopefully this little guy grows by leaps and bounds after we get home so doctors won’t worry.

He had a last MRI today which was all good! His back is looking amazing, and everyone is always astonished at how well it looks. His shunt is not as swollen as it was last week, so that means it’s doing its job right now.

As much as I’ve loved the care we’ve gotten here, we are so ready to go home and be a family together again, and watch our little guy grow and blossom.

Here’s his going home outfit- I can’t get over him! Just so adorable!

31/03/2024

Oh gosh, too cute! My wittle bunny rabbit!

31/03/2024

Yesterday was fairly chill, although we got a couple of updates.

Turns out Ethyn has hip dysplasia in both hips. This is fairly common with SB babies and kiddos, so it didn’t come as a surprise, it just means more procedures for this little guy.

The doctors are still concerned about his weight gain. He hasn’t lost anything, but he isn’t gaining either. So yesterday we decided it was best for me to pump and fortify all his milk with extra calories and just bottle feed and use his feeding tube. If little guy doesn’t gain weight by Monday, we could be looking at staying extra time here at the hospital. We are praying extra hard that he gains weight by then so we can go home.

Last night we did his car seat test and he passed! So when we get discharged he will be able to go with blessings from the doctors.

Happy Resurrection Day to everyone!