The journey continues…

After three months in his cast followed by four months in a brace during naps and bedtime we were at a crossroad to determine our next steps. Was it to keep bracing? Or did we receive what we had been praying for?

Our eyes were on the 4 month mark and Levi got his x-rays done last week. After glancing at the x-rays, I walked out with hope as I saw the bone structure of my son’s hips had changed, however, after a 40 minute call, I later learned that any change there was came from a surgeon and not my son’s development.

As I’m sitting here watching the sunrise on Lake George, New York, I’m beginning to realize that hearing that news took an emotional toll on my heart.

We go through life wanting so much for our children, wanting to give them EVERYTHING. But it’s hard to be at a place where you physically can’t give them the one thing that they need.

We desperately and prayerfully NEED my son’s bone to ossify in his hips. Fact is my prayers are not being answered. But I think his answer is “not right now.” Off of recommendation, we are going to be searching why his growth is delayed in that category, would this surface something we need to know? I don’t know, but all we can do is turn our attention elsewhere.

Levi’s case is far from ‘textbook’. His body is writing its own chapter in the book of Hip Dysplasia. As we look over our shoulder and glance back to the young married couple with no kids who wanted ‘out’ of the military…God kept us in. We see why now, our insurance is incredible and we are beyond thankful we only need to focus on the emotional and physical side of this as he already handled the financial side.

If you’re on the fence of faith, there is no “lack of God” in situations. He’s there in ALL things and my belief is that the prayer that is unanswered, may lead us to a destination that wasn’t on our radar.

I have felt a bit overwhelmed and weak recently, I think that shows where my time has been spent more than where my time should be spent.

Isaiah 40:31, “But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.”

Lord, my prayer, your will. Cast my eyes on the things I CAN change rather than the things I want to change. You give me hope in tomorrow. Amen.

Mom, this one is for you…

Sometimes ‘thank you’ will never be enough.

To be a mom, a mother is a selfless, loving human who must sacrifice many of their wants and needs for the wants and needs of their children. I’ve learned this quite often over the last 3 years of being called ‘mom’ myself.

It’s hard to reflect on all you’ve done for me in my 30 years of life, but so easy to reflect on all that’s happened in this year since the last Mother’s Day.

You’ve come to my rescue more than once. One time specifically, you dropped everything and loaded your car and came as fast as you could because I physically couldn’t do it anymore.

You sat with me and let me cry…ball actually when this year (and pregnancy hormones) got the best of me. Not trying to ‘fix’ it but just trying to give me comfort.

You helped my family pack, unpack, repack and clean.

You slept on an air mattress for weeks so I could have your support in caring for my Hippy boy.

You cooked tasty meals and bought me one too many sweets.

You loved on my boys more than I could ever imagine. While sometimes I get annoyed with goofiness, it fuels your relationship between Levi and you.

Gamma and Baby Levi

You may say some silly things at times, that I don’t understand, but you also say the right things when I need them most.

This has been a year of countless meals together, a road trip from NY to FL, many Hallmark movies, some tears, more laughs and most of all…LOVE!

Mom, this isn’t an elaborate post about you, I wish I could think of more to say, but thank you for still being a ‘mom’; giving and not always taking.

Yesterday, today and tomorrow; I love you! Happy Mother’s Day!

My mom and me!

A letter to my son’s orthopedic surgeon…

I couldn’t let Doctors’ Day pass by without writing this to you. You may not know this, but you were a gift from God. Some say there are angels around us, unseen but keeping us safe. I can’t understand that, because you are here, fully dressed with a kind heart and generous smile.

We are just shy of the one year anniversary of meeting you by a couple weeks. I remember my drive from an hour away, stomach in my chest because you would soon be telling me the path we’d take. We signed into your office and waited for your nurses (which Every. Single. One. was just who we needed, including the latest and greatest, Lydia) to take us back. There were toys to entertain our boy as we waited to meet the man who everyone recommended.

You walked in and with the greatest smile, greeted us with friendship. You sat down to walk step by step through the journey paved ahead, you made sure we understood EVERYTHING and didn’t proceed to the next thing until we did. You looked me square in the eyes saying “This is not your fault”, words I’m certain fell straight from heaven that day. By God’s great grace, he gave us you and peace through you.

Fast forward to the first procedure, the morning was surreal and so peaceful. We handed our guy off and we walked through the double doors to wait. No tears, just patience. We got everything we prayed for that day and I know each phase is the exact step we needed to get us to where we are today.

Dr. S, thank you for being the most kindest doctor I’ve ever met. Thank you for caring for my son, but caring for my husband and myself too. I remember specifically the day we realized we needed another surgery…and I got answers while you were at Disney with your family. You were on vacation and you still took time for us. I know you don’t see this as a job, it’s just your mission in life. But we are so glad you are walking in your father’s footsteps and that we passed through your hands. As I always mention, as much as I like you…I hope to never see you again. The statement as you know is bittersweet. So today I say, ‘Thank you’ from the bottom of my heart, ‘Thank You’.

What he would’ve told me 365 days ago…

It’s going to be okay, Mama. We got this. With you by my side, I’ll get through this.

If my sweet boy, Levi, could’ve understood what a year this would’ve been 365 days ago, I have no doubt in my mind he would have uttered those words when he saw the tears streaming down my face that day. And guess what, he would’ve been right.

Levi was diagnosed on March 21st, 2019. In the course of 1 year, I handed my boy over 4 times to the most incredible doctors and nurses. FOUR too many. He had 2 surgeries and 2 cast changes with a total of 4 casts (3 spica casts & 1 petrie cast) for 160 days.

I’ve hit backspace many times on this blog, because I don’t know if it’s for me or for another mom beginning this journey. I’m pretty sure it’s for the latter. And if it touches ONE person…then it did it’s job.

To the mom who just received the diagnosis for your child….

It’s going to be okay.

You’re going to go through the toughest moments ever sine becoming a mom.

You’re going to ask yourself over and over again, what you did wrong.

You’re going to welcome Anger, Fear & Sadness into your life.

You’re going to wish it could be you in the Operating Room instead.

You’re going to want to take away loneliness and become their best friend.

You’re going to lose sleep reading everything you possibly can on this.

You’re going to wonder if you are truly making the right decision.

You’re going to hope he’ll have a normal life or wonder if he’ll have restrictions.

You’re going to want to wake up from the ‘nightmare’ that won’t end.

You’re going to love life you’ve never loved before.

Because of you…he’ll keep smiling. He’ll run again. He’ll learn through this challenge. He’ll sleep in comfort knowing you’re there. He’ll be without pain. Because of you, he’ll be HIS normal. He’ll not feel alone. He’ll feel loved and life will continue just as it did before ‘that day’.

You see, what you do for your child after viewing those x-rays is not something you ever imagined. In the end, you made the decision to protect and that’s what you’re doing.

It will be okay. I promise. I can’t guarantee your journey is going to be what you hoped, and I wish I could say that ours is over…but it’s not. But I can tell you that by the Grace of God, I learned how strong a 2 year old can be and I was given an amazing supportive community who prayed. Faith and prayer got us through this year and we’re smiling (and running) on the other side.

From, A mama who knows

So here we are, one year after Levi’s bilateral hip dysplasia diagnosis. We’ve had answered prayers and some unanswered. But in the midst of it all God has been with us every step of the way. He tells us to “ask and it will be given…” (Matthew 7:7). I asked for God’s will to have the upper hand in Levi’s life because he sees his needs more than I ever can. We celebrate because of where we’ve come from and have our heads held high to where we are going.

Good-bye!

Today we said ‘good-bye’ to the 2s AND his cast!!!!!!!!!

We weren’t suppose to take it off for a few more days, but I asked his doctor if we could remove it a couple days earlier and he granted our request.

They tried something new with Levi which was splitting the fiberglass portion before wrapping it. And since it was already starting to unravel, I think it was honestly God saying “Go ahead”, I was easily able to start peeling it away without any fuss.

So…minutes after he woke up, we told him the wonderful news, removed the cast and popped him into his bath where he proceeded to play for a while! While he was in the bath in his daddy’s care, I was cooking pancakes and bacon (our new weekly Saturday breakfast).

He was carried downstairs and was fairly hesitant at first to walk without the safety of his cast, but within a couple hours he was walking ( to the barber shop & to pick out a fish tank at Petsmart) and by the end of the day…he was running.

We are very thankful to be out of the cast and hope that his 3s brings so much more meaning to his life! First up, POTTY TRAINING!!

So what’s next on Levi’s ‘hippy adventure’?

Levi will be in a brace for naps and bedtime for the next 4 months. At that point, he will get an x-ray in and out of the cast to see how his bone is ossifying, at that point his doctor will determine if we can stop wearing the brace or if we have to keep wearing it to keep his hips deep in the socket. We are praying! We are praying that this was the LAST of it.

20 Days have come and gone!

I blinked and twenty days have flown by. The day after returning from Tennessee for Levi’s cast change, I went back to work (I’m a stay-at-home mom but also work remote as an insurance agent) so things have been in overdrive since then.

Levi has been incredible with this cast like the 3 prior. But what’s a bit different is he’s walking and running. Yes, RUNNING. If you were a fly on the wall you’d hear “slow down”, “stop running” or “don’t climb that” about 20 times a day.

He still does not have a bend in this cast, so we still use our Spica Table daily for eating and play as he can not sit in a regular chair. *Note on the Spica Table: There was tons of paperwork sent into our insurance company to hopefully get coverage for it, but it was denied. Let me preface that our insurance is incredible! However, I think this is something very overlooked for ALL pediatric hip patients (for ALL insurance carriers), mainly because in the young years, there is so much learning and change in their little brains. The Spica Table gives them a place to sit in comfort rather than laying flat on a couch or ground and be able to do a ton of hands on stuff, it developmentally is a necessity. I hope to make this apart of my growing need/mission in this ‘hippy’ community.

I digress. We are less than 2 weeks until this cast comes off and then Levi will move into a Rhino Brace for his nap and bedtime. The reasoning for the brace post case is to give the hips tons of opportunity to sit deep in the cup to prayerfully ossify to bone from cartilage.

We’re going to make the cast removal day fun starting with the removal first thing, an ultra long bath, a big pancake breakfast and a trip to the park! We can’t wait! If you have any fun recommendations for us to do, let’s hear it!

PS – Levi will be turning 3 just days before the cast removal. Insert all the *mama* tears!

No job is too big, no pup is too small!

We are locked and loaded into cast #4. This mama is praying and hoping it’s the last one!

Levi got his requested “Paw Patrol Marshall Red Cast”, it’s ironic how he picked Marshall because he is known for being ‘clumsy’ and the ‘medic pup’.

With the cast change, Levi goes under anesthesia, gets a nice bath and has an arthrogram (X-ray with dye injected to see the hip sockets) yesterday. With having an open reduction on both sides, the hip can’t dislocate…but it can ‘slide’. His arthrogram looks as good as it can be although we wanted to hear ‘his cartilage is ossifying’. To stop/help the sliding, we need Levi’s cartilage to ossify to bone, or at least start that process. So that is our biggest prayer right now. We are done with surgeries for now, but we could have another in the future (a few years) all dependent on how his little sockets form.

We will be in the cast for 5 weeks, brace for 4 months and then get a new X-ray at that time. That X-ray will tell us when the brace can come off, if the bone isn’t ossifying, we will be in the brace longer.

Levi is in high spirits with his new cast and extra mobility. We are hanging out in Nashville today to make sure all is good and then head to NY tomorrow!

But if we hope for what we do not see, we wait for it with patience. Romans 8:25

God’s got us. But most importantly, God loves my kid more than I do and I am certain he has his hand in his healing and his life to come. ❤️

Taking the Spica Cast to new heights!

We just finished our first flight in a Spica Cast. Frankly, other than my son not being able to fully sit in a chair without items behind him…everything went PERFECTLY!

I was a tad concerned flying just because I often read negative press on our airline. But who is going to write about the positive experiences, when it’s so much easier to pull out the pitch forks? I am.

For starters, we got to the ticket counter to deliver my <oversized> bag. I knew I was headed there with a couple pounds extra, but we had space in our backpacks and were ready to remove necessary weight to bring us under the allotted 50lbs. Because we are military…we got a free bag….AND oversized wasn’t an additional charge. Give me all the excited emojis!

We dropped the bag, proceeded to TSA and this went fine…I think it could always be a little better. But I don’t have suggestions other than…HELP THE STRUGGLING MOM OUT! For the people in the back…help her out, even if she looks strong enough. If you’re unaware, if you have a child, the child has to be taken out of a car seat or stroller and held. So what do you do with the stroller? Fold it up while holding said child. I managed to hold my Spica kid, push the lever with my foot, shove it down forcefully so it ‘clicked’ and locked (twice might I add, since it didn’t latch the first time) and proceeded to lift one side of the stroller with my foot to get it to a good spot for me to grab with my hand. Really, I’m not knocking TSA, because they keep me and my family safe, I just wish it was a tad user friendly for said family!

We got into the terminal with plenty of time to spare for a yummy bite, some tummy time for my littlest, some walking for my Levi and communicating with the stewardess (gate agent wasn’t there yet).

Miss Lexi (the awesome stewardess that should get every promotion out there) asked if I was there with a lap child, “yes”! And I went on to explain we needed extra time to get on and we went on in conversation about Levi, while she held my baby. Yes, she asked to hold my baby while I got my wallet out. She was willing to help out when I didn’t ask and that was just so sweet. She managed to communicate with the gate agent and they moved our seats to the back so we had an available seat and we ended up bringing our car seat on board for my lap baby and then my mom sat with my Levi. She grabbed our additional bag as we boarded the aircraft and helped us all the way to the back while saying “please let me know if there is anything else you need”…she meant it.

I’m so grateful for this caring soul, she went above and beyond and made our whole time perfect! So…you wonder what airline? United Airlines! So wipe them off of your ‘do not fly’ list and give them another shot! And if you have an amazing experience like us, talk about it!

Half way there!!

We are half way to the end of this cast…well almost.

We are flying to Tennessee tomorrow from New York for his cast change. We’ve done a cast change before…but we have never flown in a Spica Cast. It will be interesting, but I’m ready to learn and experience this travel so I can share with you!

It’ll be 5 weeks since the cast went on and I’m looking forward to seeing the arthogram (an x-ray after dye was injected in) and all the healing that has taken place in that time.

To help backtrack a little, these last 5 weeks have been awesome. One thing you’ll learn when you’re going through a major life event is that you get the pity head-tilt with the verbal “How’s he doing?” While I’d LOVE to take all the sympathy I can get, I always respond with ‘My kid is amazing’. He has had the best attitude (minus his normal 2 year old tantrums). He knows that the cast is on to make his legs better and he has yet to ask for it to be removed. PRAISE GOD!

We’ve done tons of play time, movies, we had play dates with friends, trips to mom’s favorite store (Target), countless lunches out, Gamma (my mom) came to visit and this time flew by unlike the last time.

I’m constructing more pages on this website and will soon have a page on all the activities we do during the cast time which is mainly at our Spica Table (made by Ivy Rose Spica Chairs). We got a bright red one this time and Levi enjoys it for play and meals. He is now wanting a matching red cast, specifically “Paw Patrol Marshall Red”!

We look forward to writing more soon on our next phase of this cast.

failure

I’ve come to terms that ‘failure’ is an extremely strong word and it’s one you do not want to hear when you’re dealing with a hip dysplasia child (or really anything in life for that matter).

Post-surgery, 11.5 week cast, move to NY and having a baby, I was sitting nursing my newborn and noticed Levi’s waddle was ‘back’. If you recall, this was the thing that made me question my son’s stability for close to 11 months. Seeing his ‘swag’ as I often called it was not something that was comforting.

Levi’s first x-ray following surgery was scheduled for November (this was going to determine if he could end his time in his Rhino Brace). I contacted our care team in TN and explained what I saw, and they suggested we take him in to get an x-ray (early October). My husband brought him in and to our dismay Levi’s right hip was dislocating.

The closed reduction had ‘failed’ and more work needed to be done. We began working with our new pediatrician in New York to ensure we could still use our same surgeon in TN. When dealing with insurance, a lot of paperwork needed to be completed and protocol needed to be met, but after a little stress, we got approval and we were headed to TN for round 2.

 On January 2nd, 2020, Levi underwent his second surgery to correct his bilateral hip dysplasia. This time they did an open reduction on the right side with a pelvic osteotomy and they did find that there was a torn ligament which was allowing the hip to slip out of socket. This probably had to do with some sort of trauma between cast coming off and that date, but we haven’t an idea how (tripping, falling…sky is the limit with a 2 year old). As for the left hip, they did a pelvic osteotomy. If you’re not familiar with what that is, they ultimately did a little reshaping of his pelvis and he gained a little extra bone (THANK YOU TO HIS DONOR)!

So here begins our journey of the Spica Cast…round 2!