http://jaxsjourney04.blogspot.com/

Jaxs_Journey, 6545 Linden Drive, Tacoma, WA (2025)

12/09/2025

Been a long time since I've been on Facebook, we have been busy with fun and not so fun. Fun is maddox turned 4. We have a family visit from mimi and got to take a break from normal life and vacation on a lake with fishing and then the mountains with snow. We had a great Halloween with lots of candy even though it poured rain the entire time we trick or treated. We had a big thanksgiving and opened our home to host lots of soldiers from daddy's work who didnt have anywhere to go and it was a great time. Brother just finished flag football season and sister is in ballet and doing amazing, shes truly a natural and beautiful dancer. Jax took the silver medal at his special Olympics bowling meet. He's doing great as far as his strength and the compression socks and major increase of his salt intake are working for his episodes so huge win there.

Not so fun things are brother isnt any better with his gi issues and we've had hospital trips for that but our gi dr has written him off at this point and just told me to get him to gain weight and he will see him again for weight checks. Im frustrated beyond belief with that but I cant do anything about it and that makes it worse. Our pcm and all the er drs said we need a new gi dr because his labs, stool sample, biopsies, and ct scan are all abnormal but the gi dr said hes fine and its in his head and he just needs to eat. Jax has a cardiologist appt next week and its great timing because while hes not having the syncope episodes like he was, hes been doing this weird thing where he gets all red and sweaty and his heart is just racing, most recent heart rate during one of these episodes was 176. Ive been having him do different maneuvers to lower it like bearing down and blowing his thumb and thankfully hes responded before we ran out of maneuvers and we haven't had to have an er trip from it but im curious how the cardiologist appt will go in a few days. We also see genetics in Seattle the day after Christmas and then the metabolic dr right after new years so we have pretty big appts coming up through this holiday season. Im awful at keeping up with updates lately but we love you all! ❤️

10/10/2025

Been going through quite a bit on all fronts recently but Jax has his appointment in Seattle recently and it went amazing. His strength is still good enough that we can continue to stay out of physical therapy currently, he's doing great on his med dose and schedule so no changes. Being Jax, they scheduled medical students for his appointment for them to learn and see so he even got to meet lots of friends in his appointment. She went over his cardiologist notes and is going to send them to their cardiologist to go over and review and consult on so we will have more eyes on his cardiac situation which im all for. His new recommended salt intake is absolutely crazy, way more than you can get from diet, but she found and recommended an electrolyte brand (LMNT) that would have us meet his salt intake which was super helpful. We got that and he approves so win! He's been doing much better cardiac wise between meeting the salt intake and his compression socks so I feel alot better about it all. Cardiologist appt in December for another check in and depending on the cardiologist in Seattle's opinion, we may go check in with them too, waiting to hear back. But he's doing great for the time being. 🥳🥳

Big brother had to recently have a colonoscopy and endoscopy done because of his stomach pain, lack of appetite, and inability to gain weight and that was 🌟awful🌟. He has a med allergy to versed and it causes him to have intractable seizures. We get lots of pushback from Dr's about it because it's a drug commonly used to pull someone out of a seizure, so it is really weird that it does the opposite to him, but it does. Seems like something crazy to lie about but they never believe us for some reason. Most Dr's question and doubt but move on, this anesthiologist decided to test it and used a drug that works on the same neurotransmitter and works identical to versed and as soon as they pushed it, he immediately started seizing, in front of me. I always stay with my kids until they're under and then give them a kiss and leave, it's a non negotiable with me. So unfortunately I got to witness that and then be screamed at to leave the room where I then waited an hour and a half in the waiting room in a complete panic because the procedure was supposed to only take 45 mins and no one was updating me at all and I had to leave him in that state. Turns out he seized for an hour of the procedure, because no drugs can pull him out, we already know this, dr didn't believe us, and it's just a support him until it rides out of his system. I am still so so angry about that and even more angry that I was made to carry him out of the hospital with no escorts or even a wheelchair, while also having 2 siblings with me, after I told that dr that was the most gross incidence of medical negligence. Im a very forward person especially when it comes to my kids and I will never apologize for it. There is more things that happened but im going to leave it at that. But I am waiting on the biopsy results of that and then we will never see those drs again. Thankfully brother has no clue what even happened even though im traumatized from the whole situation. I still shed some tears over it and have all the hard feelings about it all.

Baby brothers birthday is Sunday and he will turn 4. 🥳🥰🥳 Sister is doing amazing in ballet and earned the front center spot for recital and i may be biased but she is the most beautiful dancer and we are so proud of her. 🥰That's the updates at the top of my mind right now. Please send a prayer for all the military families, like ourselves, that are facing hard times with not getting paid. Its going to be a really rough time for us all. We love you all! ❤️

09/23/2025

Sister has a school fun run on Thursday and unfortunately Jax has his big neuromuscular appointment in Seattle at the exact same time. I strongly considered rescheduling it but given his recent cardiac developments, I can't do that. It breaks my heart that as much as we try to not let our journey affect our other kids, they still do have to make sacrifices and it's really hard. I never do this, but I am sharing her link this time if anyone wants to support her. Stay tuned for another update after his appointment on Thursday and send all the prayers. We love you all! ❤️ https://mybooster.com/v3/dash/uWSROe6n

09/18/2025

I'm just going to give a quick update, I'm still processing it currently. Jax had a pretty big cardiac episode at school Friday. He was sitting in class and he said this wave of extreme tiredness came on and then his heart started pounding really hard and kept getting faster and faster and then he broke out in a sweat. He told his teacher he needed the nurse now and he went to the nurse. He said he got scared he wasn't going to make it to the nurse because he was feeling so wrong but thankfully he did. Unfortunately as soon as he walked into the nurse, he vomited and just laid down. She called me immediately and said I need to get there quick because he did not look well at all, which he looks like death in these episodes just pale, sweaty and just out of it. I was on my way right then and thankfully he didn't lose consciousness which would've been a 911 call. I got him home and after almost 3 hours he was finally back to normal, which is really different because it's never been more than 10 mins before. But the school handled everything amazingly and I couldn't have asked for better care so we are really blessed there.

I called and spoke to one of his cardiologists and they said its probably a good idea to bring him in and check him out so we did that today. I was thinking the entire time that this appointment was just a waste of time because he just had a check up and echo back in June and he has been acting normal again but I'm so glad we went anyway. Today we discovered a couple things, first thing is he definitely has POTS. They did the testing for that and he got that diagnosis today. Dr said his episodes will get worse and more frequent and gave me a list of things to get to help with that so Amazon is about to really love me. 🤣 We are really trying to manage as best we can without resulting to medications because the side effects can be severe for the ones he would be a candidate for and he has enough things going on without potentially adding more.

The other thing is we discovered that the left ventricle that we were watching is starting to throw abnormal things. His EKG was abnormal for the left ventricle and they checked it 3x just to be sure. I knew it wasn't great when the tech excused herself and the cardiologist immediately came in. My heart fell and then I saw the results on the EKG and just absolute gut punch. But the positive side is his echo showed his heart function is still normal right now. We go back in December to check everything again and see where we are then and figure out a future schedule for watching him with this.

I am still processing all of this and cried my many tears truthfully but we've made it through all the tough stuff thus far and this will be no different. Jax is a tough tough kid, I just wish he didn't have to be all the time. But next week he sees his neuromuscular Dr so we will keep on trucking. We love you all! ❤️

08/27/2025

Today was the first day of school! Jax is now in middle school and I had a meeting with the school and nurse on Monday and we are all thoroughly on the same page and he will be in great hands. He has his own locker in the nurses office for his snacks and meds and anything else he may need as well as his own elevator key card and all staff was briefed on him so while we hope and anticipate a boring year, I feel confident that if any excitement occurs, he will be well taken care of.

We also got him into the special Olympics on base for sports, his Dr refused to clear him for sports but thankfully the special Olympics division has a chapter on base and they took him so he still has the opportunity to play sports. He tried out bowling and REALLY liked it so we will be doing that once a week for a bit. We are trying to find ways to keep him active and hopefully keep him out of physical therapy, we know he will regularly be in and out of PT but prolonging the periods in-between with fun activities is ideal. So that's what we have going on currently. Happy Wednesday! 🥳

08/20/2025

Been awhile since I've updated or even been on Facebook really. I've personally just been having a really hard time with being isolated with no family or support system since moving to Washington 4 years ago and it's been REALLY taking a toll lately. I'm grateful that Washington has been amazing for Jax and we got so far with his journey and have him feeling great and stable for the most part, but it's so hard being here at the same time. I'm a very family oriented person and doing every holiday alone cuts deeper and deeper as each one passes, we have no support system and shouldering everything and knowing it's all on me most of the time because the army loves to take dad at the best times more often than not, seeing family through a screen or talking to them over the phone and 99% of them haven't even seen Maddox in person and he will be 4 in October, it's simply just hard and everytime I log onto Facebook and see everyone's posts about their family summer cookouts or vacations, I'm so happy for them but I can't not be sad about our situation anymore so I've had to really step away from Facebook recently for myself. We will get through and make it on the other side, but it's just hard right now. But that's the reason for my absence lately, now on to some updates.

I don't even know where to start because we have a lot, our life didn't slow down just because I took a social media break so this might be all over the place as I remember. 🫠 Jax had his dexa scan today, which is a scan to see his bone density since he had the 4 separate bone fractures in 10 months time, and that was quick and easy. We got an appointment with the metabolic Dr but it's not until January. We finally got insurance to approve us seeing genetics in Seattle given his recent developments of the bone fractures and the cardiac findings and we will be seeing them on Dec 26th. His latest echo he had last month was interesting, this cardiologist was way more concerned about his dilated coronary artery than his left ventricle, whereas the last cardiologists concerns were the complete opposite so it was confusing with such a flip but both cardiologists are watching their concerns closely and we are good for now and next year he will have another echo and they are going to add a cardiac MRI to it as well then. He's had a few presyncope episodes of the extreme dizziness and nausea and over well really unwell feeling but he hasn't lost consciousness again so that's a win. We go back and see his neuromuscular Dr again in September for just another check in but he's been doing really well aside from a couple episodes but overall he's been great. He starts middle school next week and we will have a formal meeting with the nurse and staff soon to set a plan in place so everyone is on the same page with him, I've had a few phone conversations with the nurse already and he will be in great hands this year.

Our move to the new house went great and we have been settled in for awhile now and loving the new house. Daddy got promoted. 🥳🥳🥳 Xoey started ballet and absolutely loves it and is doing so well in it. 🩰 Maddox is officially a big boy and not our baby anymore with being potty trained and he's grown up so much this summer, really conversing more and he's just not a baby anymore, he's a little boy now. Moms will understand this. Axel threw a curveball for us all and started some medical things of his own. He has started losing weight and completely fell off his growth curve for weight. Between 2 Drs appts 8 months apart, he grew 3 inches and lost a little over 4 pounds. He's always been tall and lanky, even as a baby, never a chunky baby, but now it's an issue. He eats like crazy and we offer snacks and food like crazy but he just won't gain weight and is now losing weight so he is getting his own referrals to some specialists now. We did all the labs and they were all normal, we highly suspected diabetes at one point because he's constantly thirsty too but those labs were normal and I'm a little extra and I checked his blood sugars regularly like a diabetic would for a couple days but he's all good, poor kid got lots of finger pokes for a bit for nothing. 😬🙃 But we started him on an acid reflux medicine and we will do another weight check at the Dr in a couple weeks and game plan more then. If anyone has any good weight gain snacks, send them my way please. 🙏🏼

I think that's all the big updates since my step away. Hopefully I'll be better in the future with being present here, but if I go mia again for awhile, you know why and I'll be back again at some point. Thanks for all the support and we love you all! ❤️

05/02/2025

We had jaxs neuromuscular appt today and I just have to say, hands down the best Dr! I always end up bawling like a baby in these appts, for great reasons! She is absolutely phenomenal and genuinely cares and listens and I don't have to fight for Jax with her, for the first time in our journey, we have a Dr fighting with us and I know that's why we finally got to this point where he is. He is asking to play soccer, he's brought up every single one of his grades and likes school, he is happier and more present and feels great and we owe it all to her. ❤️

We are tweaking his meds a bit and trying out something new. He currently takes 5 doses of his med a day but we are going to try out the extended release version where he only needs to take it twice a day. If it works for him, it will eliminate his doses at school and it would be so nice for him to not have to take a pill so often. She said everyone is different with how they metabolize it and we would know on day 1 if this works for him and to do the trial on the weekend just in case so once we find a pharmacy that carries it, we will do that trial.
We are going back to genetics for more testing because she agrees that his frequent fractures need to be looked into. I have fought the Ortho Drs saying it's not normal that in less than a year, he had 2 fractured ankles, a broken hand, and a broken knee cap, but Ortho just dismissed my concerns and told me kids break bones. Yes, but I don't think this often is quite normal and thankfully his neuromuscular Dr agreed. Along with that, I told her about his echo on his heart and what they found and she immediately perked up and a lightbulb went off. Apparently she had been curious of a couple different genetic conditions with Jax and the only part that was missing was the cardiac presentation and when I told her what the echo showed, it was the cardiac presentation. Then she mentioned one of the genetic conditions that was in the front of her mind really messed with the collagen and would cause loose joints and when I said he scored a 9/9 on the beighton scale and has hyper mobility syndrome, she immediately wrote the referral to genetics and said we just may get the root cause of it all.
We know he has myasthenic syndrome, we know he has these cardiac issues, we know he's hyper mobile, we know he has super sensitive eyes, we know he has frequent fractures, none of that is in question or changing, but I refuse to believe that Jax is just truly that unlucky that he has all of this random bad stuff and no one knows why or how. It just doesn't make sense. There has to be a root cause and explanation, that would make the most sense and hearing today there are a few genetic conditions that explain ALL of his things was something I didn't expect and we are excited to hopefully get answers. We may still come out having to accept that he is just unlucky and it doesn't make sense but it's definitely worthwhile pursuing even if it doesn't change any of his care or anything, it's peace of mind in this confusing journey. But we ended the appt with me crying, the Dr tearing up, and Jax thinking we are both crazy. 🤣

Tomorrow we get the keys to our new house and we are moving this weekend and send me strength, sanity, and prayers because I lost my mind a few days ago and it's not coming back. 🙃🤣

We love you all!! ❤️

04/18/2025

Little big update. We are moving to an ADA house that is more wheelchair friendly and has central ac. The base needs our current house and told us we had to move but we are getting a much better house for our needs so while it was a blow, it'll work out for the best. We get the keys to the new house on May 2nd, but unfortunately we are dropping dad off at the airport to leave for a month next week so this move is ALLLL on me. 🫠 We do have some perks of army life and even though daddy is leaving, we have a whole group of guys that dad works with that didn't even have to be asked and they're ready to come help. Jax has his Seattle neuromuscular appt on May 1st and we are anticipating great news because he is doing so incredibly well since they did the last med change. His new dosing has him hardly feeling any myasthenic symptoms at all and he's more active and happier and less pain and muscle soreness and we couldn't be happier!!

We did take an adventure and visit a tulip field and it was so beautiful! But I have ALOT on my plate currently and everything happening at once so that's why I've been Mia and will be for a little bit longer. We love you all and happy Easter!!! 🐰🐣❤️

03/10/2025

Life has been insanely busy lately and I've been terrible at posting and even just opening Facebook at this point. We had jaxs birthday party on his birthday and then we had his restaurant birthday dinner at Olive garden that weekend. Then the next weekend we had axels birthday party at the trampoline park with his friends and Jax brought 2 friends and xoey brought a friend too so everyone had a friend and a great time. I'll never do a trampoline park birthday again because it was absolute chaos and my anxiety was through the roof the entire time and the place had so many birthdays happening at the same time and it was just a hot mess, but the kids had fun so it was worth it. I'll never do it again though. 🙃🤣 Then on axels actual birthday, 3/3, we had his restaurant birthday dinner at Buffalo wild wings. Next is Dad's birthday this month and then I'm done with birthdays until xoeys in July and I'm ready for that birthday break!

We also had Jax's post op ENT appointment and it went amazing. His hearing is now perfect, no pain, his tubes are looking great and we all agreed the 10 year tubes were absolutely the right choice. He's happier and even doing better in school now and we couldn't be happier. He will be seen again in Seattle in May for a checkup and with his med changes we made a few months ago, he is doing so incredibly well and we anticipate a great check in appointment.

Staying on the medical topic, if anyone was curious how my stuff was going, I got my shots approved and started those. Not quite sure these will work as I'm not seeing anything close to the improvement they said I would, but my Dr is amazing and already got me approved with insurance for the next step med shot if we decide that at my appt next month so one less hurdle of it comes to that. I was also able to see the urologist about my kidney stones and we did more labs that gave some results, not sure what they mean yet but stuff was flagged and way off so hopefully some answers why I have stones so often. 🤞🏼 Unfortunately though I ended up having another stone on Thursday and while waiting in the ER to be seen, I ended up passing it before being seen so I just checked back out because after 3 hours of passing a stone in a waiting room chair and not being any closer to being seen, I was done and checked out and went home to lay on my heating pad. I did do a urine test in triage and about 2 hours after I got home, the ER Dr himself called me and told me to come back immediately and when I came back and checked in, they started an IV and put me in the CT scan right away and right in the back in a room. CT scan showed I had another stone passing, probably why I was still hurting 😬, and another stone still in my kidney as well so I've been having lots of fun lately. 🫠 I thankfully wasn't admitted, although that was a debate for awhile, and they let me go home at 3am so I got a nap in and then mom duty. I am currently taking antibiotics and flomax, a med that dilates your ureters to hopefully get the stones out faster, easier, and less painfully since I don't do pain meds aside from Motrin/Tylenol. I have one more stone to pass and then hopefully get answers and a treatment and prevention plan at my appt with urology on the 27th.

Then with all that, we also had Maddoxs dental appt and filling, both of our cars had to get new tires and maintenance but thankfully daddy is handy and did all of the maintenance like oil changes, fluid top offs, new spark plugs, and new headlights for my van. Like I said, life has been absolutely insane lately but we are still here and kicking and love you all! ❤️ Peep the basketball birthday cake I made for axels birthday. It was 5 layer triple chocolate cake with 2 layers having dark chocolate chips and 2 layers having Oreo pieces and one plain layer covered in chocolate buttercream. I love doing the kids birthday cakes making everything from scratch and decorating it and it truly is a labor of love. Jax wanted a chocolate chip cookie dough ice cream cake and it wasnt my best work but it tasted amazing. 🤷🏼‍♀️ It was 4 layers with 2 layers of ice cream and 2 layers of chocolate cake covered in purple buttercream and a sprinkle Xbox logo. It was so frustrating and awful to decorate and I could only get maybe 5 mins of decorating time before having to refreeze it for at least an hour. ✨ Nightmare✨ but he loved it so it was worth it. 🥰

02/22/2025

Today is Jaxs day!!! Everyone wish him a happy birthday!! 🥳🎂🎈 We love you all!!! ❤️❤️❤️

02/17/2025

Jaxs birthday is Friday!!! 🥳 I recently went back through all my pictures and videos and boy have we, mainly Jax, been through a lot!! Putting just some of them together in video form really puts into perspective everything we have overcome and gets me so emotional. We are still dealing with his knee injury but he's doing so incredibly well overall currently and we couldn't be more grateful. Jax is our little gamer and we did Dave and busters yesterday to kick off his birthday week and we plan on celebrating him all week! We have so much to celebrate with him. We love you all!! 🎉🥳❤️

02/05/2025

It's been awhile since our last update so checking in! I've been going through my own stuff with my psoriasis and the huge battle it's become. The insurance threw us a curve ball and said I need to try this one med for 3 months before I can get the shots my Dr wants me on approved and this med is awful. It makes me so sick and wipes me out and caused a shingles outbreak on my face which was just ✨lovely✨. Then we discovered that my liver isn't tolerating the meds well and my liver enzymes skyrocketed but my insurance said it's alarming but I'm not bad enough yet to justify stopping the med and move to the shots. It's been so incredibly frustrating knowing that to get the med I need, I have to continue to make myself sick and further stress my liver and to top it all off, it's not helping my psoriasis at all so I'm just extra miserable and this whole health insurance system is broken at best. But enough about me, Jax got the best news ever!! We had his Ortho appt for his feet and he is roughly about 90% resolved with his koehlers in his feet!!! It's been a frustrating journey for everyone with the casting and walking boots for months and months but it worked!!! Our Ortho Dr sent his file out to all his contacts throughout the country and he said at least one is really interested in writing up a case study on his journey with it because he is the longest lasting case ever recorded at 65 months long, far surpassing the previous 47 month. Our Dr also said his case has also made him personally change his own protocol on how he will treat this in the future so our sweet boy has made waves and changes in the medical treatment for this condition! The Dr also gave me recognition because he said "I was really thinking he would just have to learn to live with the pain and didn't think anything would matter and just did the casting to appease you because you're a relentless mama bear and there was no harm in doing them but you were right in that decision". I ugly sobbed on the way home because we really went from being told just 6 months ago that he would just have to learn to deal with it and would be in pain everyday to him being 90% resolved and pain free! Even if he ends up with this being it as far as bone healing, he's pain free and that's all that matters and we are absolutely thrilled!

Unfortunately though, Jax is Jax and he wasnt out of the boots and wheelchair for long because yesterday he fractured his kneecap. He fell in pe at school and must have been a HARD fall because he got a patellar sleeve avulsion fracture. Didn't think you could break your kneecap but leave it to Jax. 🙃 He's back in the wheelchair for at least a week with his leg wrapped up straight and then if the swelling goes down enough they said he could be free as tolerated so thankfully we are now pros with the wheelchair now. Did I mention dad has been away at training through all of this? Because of course he is. 🫠 He will be home very soon though and we all can't wait, but I was just thinking last night that last time he was gone he came home to the 3 year old with a broken leg and norovirus in the house and this time he is coming home to Jax with a broken kneecap and in his wheelchair and sister has flu A. What are the odds? Well all my military spouses know this is pretty par for the course unfortunately. 🤣🤣 But we are still kicking and even finally got some snow this past week with hopefully more to come! Happy hump day everyone, we love you all!!!

Jaxs_Journey

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