Kaden's Journey

The past 2 years have been some of the most challenging of my life, my children’s lives, my family’s life…LIFE! Am I right? At the end of 2019, I was feeling like my world was falling apart and how could it possibly get better? There was no light at the end of the tunnel…just a tunnel that seemed like it was going to go on forever. I was going to get up every day, for my kids, to care for them because of my love for them, and that was just how it would be, and I’d catch glimpses of joy as I cared for them day in and day out, but this was as good as it was going to get. And if we’re being real, marriage is tough, but especially so for couples trying to raise and care for medically fragile/special needs kiddos. Add to it that this is my second marriage and I brought 2 kids from a previous marriage, making it a blended family and BAM…perfect storm. There has been so much change, and yet not much in our day to day has changed. Really, I’ve changed…my mind. I’ve had a sort of awakening. Shortly before Kaden’s last big surgery in Oct. 2019, I had to face some of my biggest fears…losing one or many of my children, to death or other circumstances, losing my marriage, financial struggles…which all ultimately lead to a major reevaluation of self and circumstances. As I sifted through the feelings of overwhelm and defeat, I came to understand, in no uncertain terms, that the one common factor in all the seemingly challenging circumstances of my life was ME. I had been listening to all the self help and uplifiting information I could pour into my mind but it just didn’t feel like anything was changing. Sure, I could think positively and choose joy and those were bandaids to get through the day, but I felt so stuck and the worry and overwhelm and exhaustion seemed to win EVERY SINGLE DAY. Until the day I finally learned to use my brain instead of allowing it to use me. I was in a constant battle with my thoughts, trying to overcome the negative. Until I realized the battle is WON…I control my mind, my thoughts, which means I was choosing to stay victim to MYSELF. No one else was responsible for my happiness, or lack thereof. Once I learned this amazing, magical fact, my whole world changed, and to say for the better would be the understatement of the century. My kids still have the same diagnosis, the same daily issues, I have the same tasks to complete…in short, the circumstances of my life were all the same. I just no longer chose to engage in the battle of it all. Because the battle only existed in my mind. I was the one making everything exhausting, worrisome, challenging, and overwhelming. And while that may seem like I’m blaming myself for my reality, the opposite is actually true. Once I found my accountability for my thoughts, I was able to find a grace for myself like I had never experienced. I was able to have compassion for hurt I had been inflicting on myself all these years, and then the most powerful thing happened…I was able to change it all! For example, I didn’t have to worry about how my kids were going to get the supplies they needed for that month by simply placing their order, following up to ensure they would get what they needed, and DROPPING the story about how it’s so hard and the order is never right, and how can these people not understand my medically fragile kids NEED this stuff…by just doing my best, believing that everyone else is as well, and remembering that God has and always will take care of me and my kids, and then being present with my amazing children and the spectacular gifts they bring to the world. And then I started doing this in every area of my life! I get to choose my thoughts, I get to choose the story I’m going to tell myself about every circumstance in my life, and the most beautiful part of all of this…it means I get to choose the outcome! That’s right! I get to choose peace, and joy, and clarity every day because the thoughts I CHOOSE to think create the way I feel. And when I feel good, I show up in love, not just for myself and my kids, but for everyone in the world.

Ok…now on to the update 🙂

Brie is on her mission for our church, currently serving in Longmont, CO. She turns 20 today (HAPPY BIRTHDAY BRIE!!) and is doing awesome, even with all the COVID safety protocols in place. Her Spanish is getting better and she’s growing leaps and bounds! If you’d like to receive her updates, email her at BrieAnna.Bauman@missionary.org.

Judson finished his junior year in high school through homeschool (like most of the rest of the kids in the world) and decided to go ahead and continue that game by getting one of his senior classes out the way online this summer. He’s excited to be a senior, even though we’re unsure what that will look like at this point. He’s working around 30 hours a week at Walmart and staying busy helping (and hanging out with) me, working on cars with Jason, and of course, gaming and YouTubing (is YouTubing even a word? Lol!).
Joslynn is still progressing like a champ! Her vocabulary is increasing all the time and she’s getting better at communicating her wants/needs. She still just wants to run, jump, climb, and play all the time! She is especially enjoying jumping on the trampoline with the sprinkler going on these hot summer days.

On to Kaden…he’s had the most change these past several months. He recovered well from his surgery last Oct. It did reduce his tongue size quite a bit and he is able to eat about 90% by mouth now, but he still struggles with mouth sores, and most recently, teeth breakdown and issues, and when that happens, his tongue swells up super huge again, continuing to keep it challenging for him to breathe through his nose and mouth, thus keeping him trach and GTube dependent. We were supposed to do a sleep study and follow up with all his specialists in the spring, but COVID kept us home. We’ve been able to reschedule most of those appointments so hopefully we’ll have more info on his next steps by the end of summer. He will also have to spend a day in the hospital in a couple of weeks to have some reconstruction done on his teeth. Hopefully that goes quickly and smoothly and isn’t a huge deal. In other exciting Kaden news, he is supposed to start preschool in the fall! He is so ready. He’s the smartest 3 year old I’ve ever known (can you hear the bias?) and is extra social. He’s ready to play with some friends!! So we’re hoping he can start that AND stay healthy…it’ll be a balancing act for sure. And, yes, I said 3 year old…KADEN TURNS 3 THIS SUNDAY!! Can you even believe it? I know I can’t. He is seriously so much fun! His laugh and hugs melt my heart, but he is definitely a 3 year old boy through and through with all his testing the limits, mess making, destruction of property, and sass.

Jason was laid off when COVID hit but was able to recently attain employment with Xerox. Such a huge answer to prayer!! I am staying busy being mom, and all the other callings/jobs/tasks I’m blessed with. I also have some fun goals and prospects in the works so stay tuned 😉

I hope you and yours are all well and thriving despite the challenges of the world right now. I’m grateful for the opportunities it has given me to grow in my understanding of and compassion for my fellow humans and the experience they are having as well as reflect on the many blessings I enjoy each day. My prayer is that you all feel of the joy and abundance life has to offer. Love and hugs to all!

This surgery has been unlike any other experience I’ve had with any of my children before. Kaden’s first big resection surgery was tough, but he was a brand new baby that doesn’t move around much anyway. Trying to keep a 2 year old still to heal and yet move around just enough to get fluid moving but not so much that he pulls his surgical drain out (yes, that happened, a few times) is quite the challenge. But y’all know me…I’m up for a challenge!! The first few days were really rough. He was so miserable and it was so hard to watch him suffer so much. Day 3 he started to perk up a little bit, but, unfortunately, day 4 he spiked a fever and things got dicey. Lots of tests, imaging, blood work, talk of heading back to the OR, etc. But yesterday afternoon, on day 6, he showed us he’s healing well and heading in the right direction. There was even talk that we may be able to leave later today as long as his inflammatory markers have come down a bit.

So the surgery…he had two areas of his tongue resected, malformation in the floor of his mouth, as well as a pocket of malformation on the right side of his face. He is very swollen so his face and tongue actually look bigger than before the surgery, but that was to be expected. It will take several weeks for him to heal and for the swelling to subside. We’ll get him in to his lymph drainage therapist as soon as we are discharged to start helping with that. Overall, the surgeons are very happy with how it went and believe it will be successful in helping us reach the goals we have for Kaden to speak, breathe without his trach, and eat more easily. All of that, of course, is going to take a great deal of time in therapy now.

While there was an unexpected complication after surgery, I’m continually reminded what a huge surgery this was and how minimal the complication was compared to what it could be. He is healing and he’s going to be great, so we count our blessings and move into the next phase. We have had such fantastic support and help for this adventure. Vickie, Jason’s mom, came from Oklahoma to help and my fabulous BrieAnna and amazing sister, Alisha, who recently moved here from Utah to be nearer so she can help me, have all taken wonderful care of Joslynn and the other details of my life while I’ve been in the hospital with Kaden. I’m so grateful for them and the many others who have stepped up to support. We feel so loved and abundantly blessed!

 

What a couple of years it’s been! As I reflect today, on Kaden’s second birthday, over how he entered the world and all he has been through and overcome to be the amazing, happy, thriving toddler he is, I am in awe and overcome with gratitude. Even since I posted in December, he has come so far! All who interact with him are dumbfounded by how smart he is. He is signing (ASL) like a champ to communicate with us. He is eating 3 meals and 3 snacks a day BY MOUTH! He is still getting 2 tube feeds to ensure he’s getting all the calories he needs, but, seriously, this alone is such a miracle. He loves books, Flashcards, really anything that challenges him learn. He still adores Joslynn and wants to be near her at every opportunity. And his dad, OMG, he is obsessed with his dad and wants all of his time and attention when he’s home. It is such a sweet relationship. He loves attention and showing off how smart he is, which means he also wants ALL the attention ALL the time and has started throwing tantrums in true 2 year old fashion.

When we met with his medical team at TCH (Texas Children’s Hospital in Houston) in the beginning of 2019, they were super impressed with how well he was doing, but just wanted to stay the course and allow him to grow up a little more before considering more surgeries and procedures. We were supposed to go back to meet with them earlier this month but found out right before that trip that our beloved Dr. Olutoye was leaving TCH the end of June to further his career at Nationwide in Ohio. This was a big blow as we hadn’t even considered Dr. O not being the one to see Kaden through his journey. So we started praying and making appointments and God has shown up in BIG ways. We met with the surgeon, Dr. Thomas, at Cook Children’s in Fort Worth, TX., who was the one to refer us to Dr. O in the beginning of this journey. He felt confident that Cook Childrens could assemble a team that would be able to give Kaden the absolute best care moving forward. I felt great after that appointment but then today I met with his Hemotology/Oncology doc, Dr. Heym (who is also with Cook Children’s and who I already LOVE) and he shared with me that they just created a vascular anomalies team at Cook’s that will be compiled of the best of the best to care for Kaden moving forward. What amazing news!! So that is what we will do for now. He will have another MRI on July 10th and from that point, this new team will meet together to get a game plan together for Kaden, then meet with us, and hopefully, by the end of the summer, we’ll have a better idea of what will come next in Kaden’s journey.

The other kids are all doing very well. Joslynn’s seizures continued to get worse until, at the end of Feb after the worst seizure she’s ever had, she ended up on life support in the hospital. We had to give up on the idea that she would be able to live a thriving, seizure free life off all the yucky meds, and go back on them indefinitely. She’s only had one minor seizure since then and is talking more, communicating more, and overall very happy and healthy. We all still wish that we could have her energy!

Judson did get his drivers license in March and is now working at Walmart. He attended EFY the beginning of the month and will attend a music camp at UNT next week. He is also learning to play the guitar! He continues to amaze me with his huge heart and willingness to serve. He is so mature for his age and we have the best conversations. I treasure my time with him!

Speaking of treasures…BRIE! Her mission papers are in and she’s awaiting her call. Any day now! Watch my FB for the announcement of when I will go live as she opens her call. She is still working at PediaPlex and loving it. She has become one of my best friends and I enjoy the time we get to spend together, though it’s never enough and feels so very precious as I know she’ll be leaving soon for 18 months. I am super excited for her, but also dreading not having her close. We enjoyed celebrating her 19th birthday earlier this week. 19…I mean, I’m pretty sure I’m still 19 so, not quite sure how I have a kid that old.

Life is wonderful…and crazy, and beautiful, and really hard and challenging, and just so good. I am so richly blessed and so full of gratitude for the experiences that are mine. Thank you, family and friends, for continuing to be a part of this beautiful journey that is our life. Hope you all enjoy your summer and all the good things in life. Love and hugs to all!

• • Amazing how the holidays induce so much reflection. This has been a hard year. And I know I’m not the only one who feels that way. I feel like so many close friends and family have been or currently are experiencing very hard challenges. It’s been a battle to overcome the sorrow and heaviness and find peace and joy. Gratitude really is the cure all. No matter what challenge I am experiencing, I can find relief as I count my blessings, for they are many! My greatest blessing continues to be the 4 amazing kids I’m privileged to care for, well, I really only care for the two youngest since Brie is 18 and moving out this week and Jud is 15 and almost completely self sufficient. Anyway, my favorite thing in this life is being a Mom.

  Back to Brie, and her moving out 😭 Really I’m grateful she is spreading her wings, and in such a beautiful way. She is preparing to serve a mission for our religion, the Church of Jesus Christ of Latter Day Saints. I’m so proud of her and the amazing woman she is becoming. Until she leaves on her mission the end of 2019, she will continue to knock out generals in college and work as a behavioral therapist.

  Judson turns 16 in March 2019 so we’ll have another driver! He is such a good kid, a thoughtful son, loving brother, fantastic student, and all around good guy. I’m loving watching him turn into an awesome man, but also very sad my baby boy is so grown up, with no sign of slowing down.

  Joslynn still lights up our world! Her vocabulary and comprehension continue to progress, and we’re even getting a little communication! It is so exciting to watch her work so hard to overcome her challenges. She has had some setbacks as she’s had a couple of seizures in the past month. We were trying to wean one of her hard core seizure meds. We have stopped the wean as we wait for her Epidiolex (Prescription Cannabidiol or CBD) to arrive which will hopefully get control of the seizures again and allow us to get her off all the yucky meds.

  Kaden is a rockstar! He is so super smart, and knows it. He loves all the attention he gets and can be very mischievous. He continues to meet every milestone except for speech, which we’re working hard at. He was having 5 tube feeds a day and we were able to get to a point where he was able to skip one of those feeds because he could do a whole oral feed! However, a wicked upper respiratory illness hit our household hard in the first part of December and he stopped taking any oral feeds. Slowly but surely, he’s eating a little bit by mouth each day and we’ll work hard again to get him skipping tube feeds ASAP. He had an MRI and ear tubes placed mid November. There haven’t been any significant changes in his malformation. We will head to Houston in January for another visit with his team at TCH to check in and see what’s next.

  I think that pretty well catches us up. We continue to feel your prayers, love, and support. THANK YOU! May the holidays be filled with all the people and things that bring you joy. We hope your New Year is filled with peace, love, and happiness : )

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Today is the 1 year anniversary of when we brought Kaden home from the NICU at Texas children’s Hospital in Houston. Its amazing to think it’s been a whole year! And what progress and success we’ve seen. He’s only been hospitalized once, only had a hand full of minor illnesses, and is meeting almost every milestone that a typical 1 year old should be meeting. He is blowing the minds of the doctors, nurses, therapists and, well, EVERYONE! And how grateful we are for the amazing help we have for Kaden. THEY are the reason he is thriving and excelling.

He had a HUGE success in July when he passed his swallow study. Yes, that’s right, he is eating and drinking orally! Just small amounts and it will be quite a while before he doesn’t have to rely on his gtube for his nourishment, but this is a giant leap in the right direction. It was kinda funny because I knew he was swallowing, just wasn’t sure if it was safe for him to swallow anything but his saliva until after his swallow study. But the speech therapist doing his study, and the radiologist and techs and everyone, were preparing me for him to fail. They were sure it wasn’t going to be a success so when we started and he was immediately swallowing successfully without any aspiration they were all SHOCKED and saying things like “oh my gosh!” and “he’s really doing it!” Definitely one of my top 10 proud mom moments. He continues to show us that he is a determined warrior!

So, other than not getting as much babbling as we’d like from him, he is a pretty typical sweet, happy, stubborn, tantrum throwing, mess making, into everything, curious toddler. He ADORES his sister, Joslynn, and wants to be wherever she is doing whatever she is doing. He is also a daddy’s boy. He will move as fast as possible to get to his dad if he even sees him for a second. And if dad doesn’t give him attention, he throws a fit.

We have enjoyed summer so much! I was sad to see it end. Last week, BrieAnna started her first day of college (and is still working at PediaPlex and for me), Judson started his first day of his sophomore year (and got his learners permit to drive), Joslynn continues to rock her therapy program at PediaPlex, and Kaden is now 14 months old and staring to walk…WHAT?!?! Yeah, I feel crazy and emotional and all the feels. Jason is really liking his new job at Standley Systems in OK, but not loving being apart from his family all week. We are super grateful he has employment, but are hoping he finds something closer to home in the not too distant future.

That’s about it for our crazy slice of heaven. We truly are so very blessed and grateful for the opportunities and joy that are ours to experience each day. Also, Fall is around the corner…my favorite time of year so, HAPPY FALL Y’ALL!

***I can’t get the pics to flip in the right direction…seems wordpress is having an attitude today >:X so I’ll try again tomorrow***

 

 

It took a year but I’m finally ready to share pics and videos only previously seen by family and a few close friends. At this point, I feel like you have to see how he began his journey to really appreciate how far he’s come

On this morning 1 year ago, I went into a major surgery with a team of over 30 people to care for me and bring Kaden safely into this world. I didn’t get to meet him for more than 24 hours after he came into the world, but I already knew he was here to make a huge, positive impact in this world. Our first meeting was bitter-sweet. I was so grateful he was alive and safe, but I was heartbroken for the pain and challenges he was experiencing and would inevitably face for his lifetime. I felt helpless. I couldn’t hold him, nurse him, or really care for him in any capacity, but I was there every waking hour, praying that he knew how very loved and adored he is! He has been a true warrior this past year, meeting and overcoming every obstacle in his path. He is a champion! And he has such a bright, amazing future ahead of him. We love you, Kaden! We love you, buddy! Thank you for choosing our family to bless with your presence.

Gosh, I feel like so much has changed since my April post, but then so much is the same. Kaden is advancing in meeting his milestones like a champ! He started crawling a few weeks ago and quickly moved on to standing up to and cruising along the furniture and toys. He’s on target and even advanced in many areas for an almost 1 year old. The only place he is lacking is in babbling and self feeding, but hopefully we’ll be doing better there quickly. Which brings me to his next steps… he is making noise past his trach even without his speaking valve on which is extremely encouraging. And now when he does have his speaking valve on he’s pretty loud and really learning those babbling sounds that he needs to be making. Shouldn’t be long before we hear a “mama” or “dada.” He was also scoped again while we were in Houston earlier this week and they’re feeling like he may be able to pass a swallow study now. So we are going to start trying to get things in order to have that happen soon. Both of these encouraging things are a step in the right direction to get him breathing without his trach and eating without relying on his gtube. It will still be a very long process, years even, but we are starting down paths that are very exciting! We also learned in Houston that they won’t want to do any major surgeries on him until probably around 3 years of age. They feel like he really is responding so well to the Sirolimus and kind of just growing into his extra chubby cheeks. We talked about doing potentially more debulking of his malformation at that point and making sure his airway and throat are functioning as well as they can. Then we would move on to plastic surgery / reconstruction and even look at trying to give him some use of the left side of his face which is currently paralyzed. There was some 7th nerve damage that he hasn’t been able to regain use of. It’ll be a ways down the road but he may end up with a mechanical left side of his face. In the meantime, they want him working with a physical therapist that should be able to help him find ways to have the right side of his face compensate for what the left side is lacking. And we finally discussed that sclerotherapy will be taken completely off the table until all surgeries and reconstruction are done. It will really be kind of a last effort to dry up any remaining lymphs that weren’t able to be taken care of with surgeries. Back in May, we had a little bit of a scare because his head circumference size grew significantly over a short period of time so they threw him into MRI pretty quick to see what was going on. It was determined that the ventricles in his brain that hold lymphatic fluid are enlarged, but not to the point of anything they’re concerned about at this point. They’re just going to keep a close eye on it by imaging him every 3 months. The other exciting thing that we have found that has made a big difference in Kaden’s life is allowing his trach tie to be open in the back and taped to his back with kinesio tape which is allowing for a lot more lymph drainage to happen down the back of his neck and back. It has made a visible difference in the size of his face and head. All of his doctors, therapists, and nurses continue to be key to his continued success. He really does have the most amazing team! Speaking of awesome nurses, we had Kaden’s very first awesome nurse leave us in May to continue her education and become an RN. We are super excited for her to continue on this path, but we were super sad to lose her. We also changed nursing companies because we were having a lot of challenges, but the new nursing company is awesome and has even sent us a new nurse that we already love!

In other news, my mental health is doing better because we’ve had a lot of prayers answered and Jason has found stable employment in Oklahoma and is really enjoying it. This takes him away from us all week, but has helped us really understand that everything is working in God’s timing because BrieAnna is able to be here in the evenings now to help make up the difference.

Speaking of BrieAnna, she turns 18 tomorrow! It is extremely discombobulating to have my oldest turning 18 and my youngest turning 1 this week. But we are so super blessed with all four of our amazing kiddos! They’re all thriving and growing in their unique individual ways. BrieAnna graduated high school the first weekend of June and has taken an internship as a behavioral therapist at the same center where Joslynn goes for therapy. She’s absolutely loving it and is already amazing in this line of work. Judson is busy working on getting his driver’s permit and Joslynn is just as busy as ever, continuing to shock us with her increase in vocabulary and non-stop happy energy. I continue to stay busy getting these kids here, there, and everywhere to all their appointments but I’m mostly so grateful to be home with my kids this summer. This last trip to Houston really made me think about the three months I had to spend away from them last summer and has made the time I have with them this summer that much sweeter. Hope you all are enjoying your summer and family time too!

So let me start by apologizing for leaving everyone hanging for so long after Kaden’s ICU visit in February. I know I mentioned we would be receiving new information and then I never shared that information. So here it is. Kaden’s bedside scope while he was in the ICU showed that his malformation throughout his airway and esophagus is still too enlarged for him to be able to pass a swallow study. So for now we stay the course, relying on his trach and G-tube. Our trip to Houston was great! We saw a few of his doctors and were told they feel like he’s progressing really well. We’re still trying to get his Sirolimus dose correct and relying on that to continue to bring down more of the lymphatic swelling. We’ll go back to Houston to meet with his team again in June and at that point will determine if we feel like we need to do some internal lasering through his airway and esophagus to give him a better chance at being able to eat and breathe on his own at some point. I think that’s about it as far as Kaden’s medical situations are concerned for now. He’s still growing and progressing and as sweet and happy as ever.

As I was reading through my previous post and thinking about how I knew I was in the right place at the right time doing the right things, and then thinking about the drastic change in life circumstances that has happened for our family since then, specifically Jason being unemployed again and the challenges that brings on top of the other many daily challenges we’re facing, I found myself asking how much more growing, stretching, and enduring God thinks I can handle. I finally broke, and I’m trying to crawl out of the wreckage. This is probably why I’ve been avoiding writing an update. I know in one of my previous posts I talked about how everybody tells me I’m so strong and how I believe it’s just been survival. And I’m realizing more and more that when you’re trying to survive you don’t have a lot of time and energy for dealing with the emotions that come along with the challenges in life. I’m sure many of you can relate. The unfortunate side of that is when emotions are left unprocessed, they find a way of deciding to all come flooding out at once. So that’s what I mean by dealing with the wreckage. I’m really not okay right now, but I’m beginning to believe that I will be okay, and things will work out. I really don’t know when or how, but trying to believe and have hope is a start.

In the meantime, it’s a very exciting time in our household with BrieAnna graduating in a couple of months and Kaden turning one this summer. I am REALLY looking forward to this summer, especially since I missed the entire last summer with my family. I continue to find joy in each day through the amazing kids I have. THEY are my strength, my reason for continuing to try to be the best me I can be. 

Our keeping “Kaden out of the hospital” streak finally broke yesterday. We’re here in the PICU at Cook Children’s Hospital in Fort Worth. He has some upper respiratory virus that hit him really hard and fast and made it very challenging for him to breathe. Not quite sure how long we’ll be here. It’s up to Kaden and how quickly he recovers, but I’m hopeful we’ll be home in the next couple of days.

Over the past month or so, there have been several circumstances in our lives where I’ve had to take a look back at my life choices and the many forks in the roads. I think about what would have happened if I had chosen a different path at certain pivotal moments in my life. As I sit here today, I know I’m where the Lord wants me to be. I know I chose the paths that I needed to. They have blessed me with 4 amazing kiddos and the opportunity to grow in love and learning with a wonderful husband. I’m certain that if I had chosen different paths, my life would maybe not have been quite so challenging, but I also know that means it wouldn’t be nearly as rewarding. I’m also grateful to look back and see that I’ve been given the opportunity to look outside our circumstances and challenges and see what others are experiencing around me. It seems my pity parties are constantly thwarted 😉 As I sit here in the ICU with Kaden, my sister is in the hospital with her little boy who had his second surgery in a week’s time. My sweet sister-in-law is dealing with her dad who had a hard fall. And so many other family and friends that are dealing with illness, loss, and other challenging life situations. I continue to see that we’re given just what we need to keep us humble, stretching, and growing, as painful as it may be.

I know many have been asking what’s next for Kaden. We are supposed to have a bedside scope with his ENT on Friday to see if he could have a successful swallow study done. This would allow us to start introducing foods orally and work torward getting him weaned off his trach and g-tube. As far as his lymphatic malformation, we will go back to Houston March 5th to meet with his docs and see if they want to do anything more in the near furute. I’m thinking everyone is just wanting him to grow and work on the things in our immediate path, but we’ll see. I’ll definitely do another update after our Houston trip. In the mean time, he’s meeting most of his milestones and still super sweet and happy, except for when he’s sick and confined to a hospital crib, of course.

Thanks for being part of our world. We draw so much courage, strength, and hope from you all! Sending prayers, love, and hugs to all 😙🤗

 

I can’t even tell you where the time has gone since I posted last. Life continues to be non-stop busy, crazy, hard, and wonderful. Let me start with MRI and ABR (auditory brain-stem response) results from my last post. The MRI showed that Kaden’s malformation in his face is too microcystic to be able to do sclerotherapy treatments and additional surgeries at this point are too risky due to potential facial paralysis and other potential complications. The consensus is to hold off on anything major for now and be faithful in his lymph drainage therapy in hopes his lymphs will find their own natural drainage channels. We are already seeing great benefit from this. Kaden also had an ABR while still under sedation from the MRI and the results from that were permanent hearing loss in his left ear and mild hearing loss in his right. This was hard to hear and deal with which is likely why I didn’t want to post right after. However, we did another ABR in clinic last week with him sleeping in my arms and HE PASSED! Just mild hearing loss in his left ear. My theory is the lymph drainage we are doing is taking pressure off his internal hearing anatomy (nerves, eardrums, etc.) which is why he failed the ABR in Oct. and is now passing it. What a huge blessing and relief that we don’t have to deal with hearing loss on top of everything else.

We have really fallen in with Kaden’s nurses and continue to be so impressed with the level of care he receives from them and all his doctors, therapists, and caregivers. He is meeting all his milestones and continues to be so sweet and happy. He did have his first illness which started the day after Thanksgiving and was very stressful and scary but we made it through it without a hospital visit which, I believe, is truly AMAZING! Everyone else is doing well. Jason is working hard trying to get a new business off the ground, on top of the few others he already has going. Brie is busy busy with school, work, soccer, choir, and preparing for college (and all the essays, applications, decisions, etc., etc., etc., that comes along with that), and learning to become an adult. I can’t believe she will be 18 in 6 months. How do I have an (almost) adult child? So crazy! It’s especially discombobulating as I rock my precious baby Kaden and feel like I was JUST doing that with Brie. Anyway, Judson is doing SO GREAT! He’s rocking his freshman year. He continues to be super into technology, gaming, and vehicles. His knowledge on these topics is astounding. He is also loving choir and I am loving that I get to attend school concerts where I get to hear both my big kids share their amazing vocal talents. Joslynn continues to be the sunshine in our day every day. You just can’t spend time with her and NOT feel joy. She is thriving at therapy and learning and developing more and more each day. I’m just busy trying to get everyone where they need to be, keeping house, and loving and feeding them all. I truly love being a wife and mother. The highlight of our year was November 21^st, where our family was sealed together in the Dallas TX LDS temple for eternity. We are excited to know we will be a forever family. Our life is not without challenges (who’s is!?!?!) but we are abundantly blessed and so very grateful for the love and support we continue to feel from such wonderful family and friends. We pray you will all feel the love of our Heavenly Father and Savior throughout this holiday season and wish you all the best for 2018!