Become an organ donor in honor of Jaxson

Jaxson’s story is finally on the website “Liveonaz.org”. You can read his story and register to be a donor in his honor. All you need to do is click the yellow heart (ūüíõ) and fill out the form. click here to read the story & register. If you think you’re a donor but aren’t sure, there’s no harm in registering again!

The following info is from https://www.donatelife.net/faq/:

  • Someone is added to the transplant waiting list every 10 minutes.
  • 8,000 deaths occur every year because organs are not donated in time.
  • 118,000 men, women, and children are awaiting a lifesaving organ transplant.
  • 95% of Americans are in favor of being a donor, but only 54% are registered.
  • People of all ages & medical histories should consider themselves potential donors.
  • All major religions support organ, eye & tissue donation as a final act of compassion & generosity.
  • An open casket funeral is still possible; the body is treated with care and respect.
  • Registering as a donor does not affect your patient care. The doctors trying to save your life are separate from the doctors who remove your organs. Organ donation isn’t even talked about until death is declared.

If you’re still not sure if you want to become an organ donor, I encourage you to research it more, talk to people, and read the stories; it’s one of the most amazing, and selfless things you can do. It’s heartbreaking to me knowing that in order for my child to live a more normal life, a child has to lose theirs. But i’m always incredibly thankful when I stories of parents choosing to donate their child’s organs. Knowing that we have the opportunity to give someone the gift of life is phenomenal.

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 Normally I would do an update, but nothing has changed since I last posted. He’s currently getting over a little bug, but thankfully it didn’t require a hospital visit. He’s still learning more words and is continuing to talk more and more every day. We’re getting ready to spend our weekend up north, we’re looking forward to getting out of the city and enjoying cooler weather. ūüôā

Thank you everyone for your continued prayers & support. ‚̧ԳŹ

 

I have delayed posting this because I was told recently that if I publish Jaxson’s story to one of the Donate Life websites, people could register to be organ donors in his honor & I wanted to put the link in this post. I submitted his story 2 weeks ago & it’s still not on the site, so I will write a separate blog post when it is published.

I’m so amazed to see how much love and support Jaxson & our family have from our community. On Saturday, Shawn, one of Jaxson’s teachers organized a garage sale; people donated items to be sold, & volunteers showed up to help set up. We couldn’t have asked for better weather that day, and the sale was successful. With the help of our community, we were able to raise over $2000 to help reduce some financial stress during & after Jaxson’s transplant. I am incredibly thankful for the time and effort put forth by Shawn & all the volunteers who made this happen. Seriously, thank you all so much- it means so much to me that you took the time to do this. Shawn’s daughter, Kyley, also made a video of Jaxson’s journey (and did an amazing job). You can view it HERE.

 

On Sunday April 30th, a woman named Ashley Foster, who is an organ recipient, represented the transplant community at a local Diamondbacks baseball game. She threw the first pitch & honored both organ donors and recipients by wearing a shirt filled with their names. Jaxson’s name was one that was listed. (It’s on the back, to the right and towards the bottom.) I’m sure that was an amazing experience for her, and so special that she wanted to include other people who have been affected by transplant.

 

Mr. Jaxson has been doing wonderful lately. He hasn’t been admitted to the hospital since December. That’s 5 months. Fiiiiive whole months, guys! This is our longest stretch without a hospital admission since- I don’t even know (its been soo long).  But we’re loving it. His progress definitely shows it. Usually, when he has repeated hospital stays, he will regress- sometimes a little, sometimes a lot. It’s always one step forward, two steps back. So during those times, his progress wasn’t as noticeable- because he would learn one thing, but stop doing another. Or he’d become so stressed out that he wouldn’t learn anything for weeks. Lately he’s been learning/trying something new every day. He repeats words. It started when he wanted sips of water, I told him to say “water” in sign language. Instead of signing it, he said “wawa.” The day before his birthday, I kept telling him to say four. I’d say “how old are you?” and eventually, he would say “Four.” Then, his nurse worked with him to spell his name- not even long at all. Maybe five minutes in and he was trying to repeat all of the letters in his name. His pronunciation isn’t perfect, obviously. But he’s trying, and a lot of them he repeats spot on. He recognizes his name when written, and will try to say it. He will repeat his ABC’s, some numbers, and now says car, truck, sissy, mom, dad, bye, and dog without me telling him to. He’s finally to the point where whatever it is, if I tell him “Jaxson say____,” he will say it. It’s seriously amazing. For the longest time, anytime I would ask him to repeat something, he would instantly get frustrated. Even when he learned signs, he never did them unless he was asked. I really think his speech device is helping him be able to verbalize a lot more, because he’s able to push a button and hear it over and over. He’s going to be talking up a storm soon. He takes sips of water out of a sippy cup- which is another big deal. He’s still not interested in anything other than water, or eating food, but I know he will get there. He’s interested in toys now, more than he’s ever been. Some of his favorites are Mr. Potato head, monster trucks & play-doh. Our next goal is to get him to do more imaginative play & make sounds. An example- when he’s playing with the monster trucks, he’ll say vroom vroom or bang when it hits something, or when he’s playing with his potato heads, he’ll act like they’re talking to each other etc. Again, at the rate he’s going, I know it won’t be long until he completes that goal either. Before he started walking, I remember thinking he never would, or it would be forever until he did. Then one day he just got it and soon after he was running, so I know soon this will all be in the past & he will be all caught up; he just needs a little extra time to develop. It’s amazing to look back and see how far he’s come in such a short amount of time. I know to some, these accomplishments may seem small, but to us they’re huge & worth celebrating. Watching him grow and learn new things has been wonderful.

Thank you everyone for your continued prayers & support, we appreciate it!

FOUR.

Four years of hugs and kisses.

Four years of bravery and adventure.

Four years of laughter and tears.

Four years of snuggles.

Four years of pure love.

Four years of YOU.


Since it’s Jaxson’s birthday, I wanted to share his birth story.

After I found out Jaxson had gastroschisis, I stopped seeing my regular OBGYN and started seeing a high risk one. They were able to monitor & follow my pregnancy more closely. At one of my appointments a few weeks before he was born, he had a high heart rate so they hooked me up to monitors in the office & waited until it came down. On April 22nd, 2013 I went in to the ER because I was experiencing contractions- different than the normal Braxton hicks I would often feel. They drew labs, checked for infection, and did an ultrasound. Everything came back normal, they told me I was dehydrated and gave me fluids then sent me home. Contractions stopped for the most part, but I would still have one or two every so often. The night of April 24th and into the morning of April 25th, I got absolutely no sleep and was having more painful contractions. I called my doctor and they advised me to be seen right away. So, off the the ER I went, again. *Side note- I didn’t go to the hospital Jaxson was going to be born at, because this one was closer to my house and I figured they’d send me home anyway.¬†

I remember walking in and feeling like he was just going to fall out- (tmi? sorry) Once I was in the ER, they checked to see how far dilated I was, and to everyones amazement, I was at 6 centimeters & 100% effaced. They started IV fluids, gave me one shot of steroids to help his lungs, and terbutaline to try and stop contractions. The terbutaline was the worst, it made me so nauseous. The doctor told me I needed to be admitted, and I was so out of it I just said “Okay.” My mom thankfully chimed in and said if I were being admitted, I needed to be transferred to a different hospital with a level 4 NICU, because of Jaxson’s birth defect. They didn’t feel comfortable transporting me via ambulance, so a helicopter was called in to fly me to the right hospital. It was a quick probably five minute flight, but still pretty scary. My mom went home to grab some things and met me there. Once I was settled in to a labor and delivery room, my doctor came in and told me the plan was to keep him in at least another 48 hours so he could get the second dose of steroids. It was about 12pm now and my contractions have subsided, and I haven’t dilated any further than a 6. I kept asking if I could get some food, but the doctor kept saying no. I was able to eat ice chips and a popsicle. Finally, after no signs of progression, at about 5pm they told me it would be okay to order a light meal. So I ordered soup & a salad. ¬†As soon as it arrived, I was about to take my first bite and had a big contraction. The nurse noticed it on the monitor and came in to see how I was. I felt fine. The doctor came in shortly after and checked me and I was dilated to 9 centimeters. She called out for an emergency c-section, and I was being wheeled into the operating room around 6:30pm. The doctor and anesthesiologist argued for a couple minutes about how to administer my spinal; typically they want you sitting up, but my doctor wanted me laying on my side because if I sat up, I would be giving birth on that table. He finally agreed with her, and the rest is a blur to me. At 7:07pm, at just 30 weeks gestation; a warrior was born.¬†He weighed 4 pounds 3 ounces and was 16 inches long. I vaguely remember hearing him cry, and they brought him over to see me for a split second. While I was getting stitched up & heading to recovery, he was on his way to his very first surgery at minutes old. My mom showed me a picture of him & I was able to physically see him for the first time the next morning.

Every time I look at pictures of him in the NICU, it’s like i’m there again. I remember every detail, every feeling and emotion. I can hear the beeps, and smell the smells. That time in our life is one that I will never forget.

Today he is a vivacious, loving, and courageous¬†four year old. I know it’s said by parents everywhere, but It’s so amazing how fast time really goes by. He has taught me so much about love and life, and he doesn’t even know it. His bravery is admirable. His growth is remarkable. He is inspiring.¬†I can’t wait to see what he continues to blossom into. ‚̧ԳŹ

Below are some pictures of people wearing their shirts to honor Jaxson. 

NDLM & some progress.

First of all, I want to thank everyone who donated/bought a shirt from our booster campaign. It will tremendously help ease some of the financial burdens we will be experiencing ¬†post-transplant and allow me to focus more on Jaxson and his recovery at that time. I’m amazed at how well the campaign did, and the fact that so many people are willing to support him & bring awareness to his condition is incredible.

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I pulled this informational pdf from the Donate Life website:¬†2017-NDLM_FAQs-FINAL¬†You can also¬†read my blog post about organ donation, and feel free to share! Although my post highlights the need for pediatric donors, adult donors are always¬†needed as well! It only takes a minute to register ūüôā

If you’d like a “twibbon” on your Facebook profile picture (which is the donate life banner on the pic below) to show your support & raise awareness for organ donors, then you can¬†click this link¬†& it’ll walk you through the steps.

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We were able to attend a small transplant fair last week. There was a lot of information and great resources there. While I was there, I came to the realization that I want to be more active in the transplant community somehow- I was able to speak with the woman who put the event together and will be meeting up with her this week to discuss more of my ideas and hopefully get something going.

Jaxson had a follow up GI appointment on Friday. A couple weeks ago his labs showed high liver enzymes, so GI ordered a med 3x a day to be given orally and told us to try small formula feeds- because when he was on feeds his liver looked a lot better. Jaxson has severe oral aversions & will not take meds (or anything really) by mouth. So we attempted to drop an NG tube (a feeding tube placed through the nose, down the throat & into the stomach). He had one for about two years, but we took it out last year due to the fact that he was no longer allowed to take anything by mouth. He did well with it in the past, but this time he absolutely would not keep it in. As soon as we got it in place he would pull it right back out. So at the appointment, I asked the GI doctor about the option of placing a g-tube (a feeding tube on his tummy going directly into the stomach). She wanted to get the opinion of his transplant team in Pittsburgh before she went ahead with that surgery. Unfortunately, due to the risk of bleeding, his transplant team highly discouraged placing a g-tube. So, we will just keep trying to encourage oral feedings & hopefully Jaxson will get approved for feeding therapy. He is continuing to do great otherwise.

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Back in February Jaxson saw an orthopedic surgeon because when he walks, his left leg bows outward. He referred us to a neurologist. We finally saw her today and she doesn’t think it’s neurology related, but wants to rule out anything possible. So she ordered an MRI, an EEG, and genetic testing. Those will all take some time to get an appointment for & results back so in the mean time we will continue his therapies. Once we get those tests done, if they don’t show anything & the leg problem persists, he will go back and see the orthopedic surgeon.

Jaxson finally got his speech device on Friday & has been doing¬†SO¬†well with it. Even though I know what he’s asking for or wants i’m still making him tell me on the tablet. He’s still getting the hang of it- but he seems to know that its for communicating. I’m so happy for him because now he can tell us what he wants before he gets really stressed out. I love that its customizable too. The look he gives me when he asks for something & I give it to him is the cutest. It’s like he’s thinking “Hey I was able to tell you exactly what I wanted¬†right away.” I guess you’ll only appreciate little things like that when your child has been unable to tell you what he wants or what he’s thinking for the last four years, and continuously gets stressed out and upset because he can’t effectively express his wants and needs. So this device will be a life changer for sure.

He’s been progressing in other areas as well; He is learning how to drink water from a water bottle. I know earlier I said he won’t take anything by mouth- which is mostly true. He only began expressing interest in water again a couple weeks ago. His oral aversions are more anything with a weird texture or taste- he won’t bite or chew anything. He will only lick chips, lollipops, popsicles and take sips of water. He’s¬†slowly¬†starting to want to explore more things food wise. I’ve learned that with him, the more I pressure him to do something, the more likely he is to regress and shut down altogether. So i’m letting him experience what he wants when he wants. It’s definitely a goal of his to be able to eat by mouth- and I intend to go through with the feeding therapy whenever it’s available, but I kind of like him doing it slowly anyway. When he discovers he likes something, he finds comfort in it and wants it all the time. And there are times where the doctor will say no more of that, or nothing by mouth- and in those scenarios he doesn’t understand whats going on and will become upset, sometimes inconsolable. So in a way, right now it seems best not to force him to eat by mouth because inevitably in the future there will be a time where he won’t be able to eat for a little while and he will end up regressing again.

He’s becoming a lot more vocal lately- still not saying words or speaking sentences, but making noise when playing with his toys, yelling, and saying baba mama dada more than he ever has before.

He’s becoming more active- learning how to run, walking basically everywhere, jumping on the bed (with supervision, of course),¬†and has just recently learned how to do somersaults!

He loves bubble baths again!¬†Seriously, I can’t keep him¬†out¬†of the bath now. Just weeks ago I couldn’t even get him in. (He’s gone through phases¬†where he loves it, hates it, loves it…) Hopefully this time it sticks and he’ll continue to love it so I don’t have to fight with him to give him a bath. ūüôā

As always, thank you for taking the time to read our blog, i’ll leave you with a couple pictures to look at. ūüôā

So things have been going pretty well with Jaxson lately. The ethanol lock in his broviac everyday seems to really be helping in killing any bacteria as he has not had a line infection since December! (For awhile he was getting infections almost every month.) His red blood cell count has finally stabilized and will hopefully remain that way for awhile. His labs this week showed low white blood cell count & low platelets; that is either from the portal hypertension or is just simply be because he’s currently fighting an upper respiratory bug.¬†Either way he is still acting normal, and its not a big concern right now. The liver biopsy taken a couple weeks ago showed scarring of the liver related to the long term TPN use, but it isn’t any worse than the first biopsy taken back in 2014- so thats a good sign. His ¬†liver enzymes are high, (again due to long term TPN use)- back when he was mostly tolerating feeds, his liver enzymes were more stabilized and so his GI doctor thinks he could really benefit from some¬†small formula feedings. To put into perspective just how small, she ordered 10 mLs over two hours 3 times a day. 10mL=2 teaspoons. 30mL=one ounce. So, he will get a total of one ounce of formula per day. I will have to place an NG tube again, which he won’t like at all, but I think this is a step in the right direction for now.

He had an endoscopy today, it was a short 30 minute procedure. Because he’s older now and more aware of whats going on, he got really sad when I put him in bed and the nurse started rolling him back to the room. So I was able to be in there and console him while they put him to sleep. Im glad I was able to be there for him, but it was really hard on me watching him go under anesthesia. Anyway, the procedure was done shortly after that and once he was awake I was able to be with him. He stayed in recovery about 30 minutes and then we were on our way home. His doctor said everything looked really good & she didn’t have any concerns. Finally- nothing but good news lately ūüôā

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Thats about all thats been going on lately, like i’ve said its been very slow and steady around here (which is absolutely a good thing). He’s on spring break next week, so we’ll be hanging out together all week and hopefully doing some fun stuff. ūüôā

Again, if you would like to purchase one of Jaxsons shirts or simply donate, you can do so through our booster campaign. https://www.booster.com/jaxsons-got-guts We only have two more weeks to reach our goal, so please share the link on any social media! Anything is greatly appreciated.

Shirts :)

I wanted to post our booster link here again, because I know I get daily views on our blog outside of my circle of Facebook friends.

https://www.booster.com/jaxsons-got-guts
 This campaign is only going on until march 30th, and I’d love to see Jaxsons shirts reach farther than just our family and friends! We’re almost to our goal! The shirts help bring awareness to Jaxsons condition, as well as organ donation. To show support, we’re planning to all wear them on Jaxsons birthday (April 25th). If you do, please post a picture to Facebook with the hashtag #JaxsonsGotGuts- so everyone can see :).  All funds raised from this campaign will go towards finances during the transplant. Id also appreciate it if you could share the link on any social media. Thank you! 

It’s been quite slow around here lately.¬†Thank god. No admissions, just some routine follow-ups, school and therapy.

His GI doctor ordered a liver biopsy, and an endoscopy. The liver biopsy was today and the endoscopy is scheduled for March 16th. Both are done outpatient and under general anesthesia. The liver biopsy was pretty quick, but he had to stay in recovery for three hours because of potential bleeding. He was in some pain but slept through most of the recovery time. We are now home, he is taking it easy and he seems pretty comfortable.


Jaxson had to have another blood transfusion early February, and they were finally able to do it outpatient. He normally functions pretty well on the low side, but his counts got significantly low and it started to affect him. He’s had two lab draws since then, and I wasn’t notified of him being low either time- so thats a really good sign that things may be starting to go back to normal. They drew labs today before his biopsy and I was notified that his counts were 11, which is in the normal range. Lately, he would get a blood transfusion and his counts would drop pretty quickly. So since its been a month since his last transfusion, and his counts are remaining stable, i’d say his body is finally healing.

The same day of his transfusion, he had an appointment with an orthopedic surgeon. We’ve noticed when he walks, his tibia (the bone below the knee) kind of bows outward, as well as his foot. It’s more prominent in the left leg, but still slightly noticeable in the right as well. His physical therapist at school recommended being seen for SMO’s which are leg braces that could possibly help get it straightened. I’ve never dealt with this before, so I took her advice and got him seen. Let me just say this doctor was¬†beyond rude. He was literally in the room for maybe a total of three minutes. He wouldn’t even take the time to watch Jaxson walk, and immediately referred us to a neurologist because of his developmental delay & how late he started walking. Maybe he’s right- maybe it is a neurological issue, but there was definitely a better, more kind way to state that. He made it seem like we wasted his time & we should have known this wasn’t an orthopedic concern.¬†So his respite nurse and I left that appointment feeling quite offended. Not because he couldn’t help us, but because of the way we were spoken to & the fact that he barely got to know Jaxson. Neurology couldn’t get us in until April, so it’ll be a couple months until we get those answers.

Insurance absolutely will not cover a multi-listing, or re-listing at another transplant center. I tried Lucile Packard in California, and though they were willing to do anything to make it¬†cheaper (not re evaluating, getting tests done here in AZ instead of there etc.) insurance just wouldn’t budge. I then tried Nebraska, which is another great center, but didn’t get far, as our insurance is not contracted with them. Ugh. I was really hoping for Nebraska, because they have an intestinal rehab clinic, to try and see if a transplant is avoidable and I really wanted to explore that route. I’m going to research more centers (Los Angeles, Boston, Miami, & more) and look at their statistics. I’m not giving up on getting him multi-listed at another center. He’s going on two years being listed, and I will do anything in my power to improve his chances of being called sooner.

We had parent teacher conferences a couple weeks ago- and he’s doing incredibly well. The fact that he has a 4 hour break from TPN helps tremendously, because he doesn’t have to carry his pumps at school. He’s free to walk and do whatever he wants without having to worry about waiting for someone to follow with his backpack. He even walks all the way up to the bus in the mornings, and back in the afternoon. No stroller needed. ūüôā That alone is a big deal considering just a few months ago he had to be carried everywhere. He’s becoming more and more vocal- saying baba, dada, and peppa frequently- and he just started saying mama! Again, something he was not doing just months ago. He had his speech device evaluation a couple weeks ago and did so well with it. His first sentence was “I want to watch cartoons.” The device is a tablet/iPad with a communication software installed. All he has to do is tap buttons on the screen to communicate. It says outloud whatever button he selects, so not only will he be communicating, he will also be hearing a word or phrase over and over which in turn will help him learn. The phrase “I want to watch cartoons” was a series of three buttons. First he pushed I want, that brought up another screen with actions:¬†to play, to watch, to eat, to drink etc.¬†he chose “to watch” which then brought up another screen of things:¬†music videos, cartoons, etc. Its exciting because that was exactly what he wanted to do and for the first time, he told us all on his own.¬†I think it is going to be really good for him and I absolutely cannot wait for him to get it. It will take a couple more months for him to get the device though. Just to get the evaluation set up took three months. I believe this final step will take 2-3 months. In the meantime, pre school is working with PECS (picture exchange communication system) which is the same thing as the tablet but in little square card form. I’m hoping to get him use to it before he gets it, so we don’t have to prompt him to use it. Like with sign language, he knows signs but he won’t do them unless we tell him to. He doesn’t automatically do it as a means of communication. I really think he will adapt well to it, this is a huge thing for him.

And last but not least, we have been working on a t-shirt design & setting up a booster campaign. It will not only bring awareness to Jaxson’s condition, but its a good way for us to raise funds for transplant related expenses. And what better day to launch the campaign on than World Birth Defects Day? So, if you’d like to purchase a shirt, you can do so at:¬†https://www.booster.com/jaxsons-got-guts¬†There is an option to purchase a shirt, donate without a shirt, or both (and either option is greatly appreciated!) This campaign ends March 31st.

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What my sons chronic illness gave me

I’ve always said that I was chosen to be Jaxson’s mom for a reason, and I truly believe that. Going through this journey with him has taught me so much about life, and it has helped me grow as a person. I’m not going to lie, this has been a roller coaster of emotions. It’s stressful at times, and we have our bad days, but those bad days make the good days so much better. I have learned to be thankful for different things. Aside from being blessed with¬†the sweetest boy, who is no doubt a warrior, here are a few other things I’ve been given:

Strength. 3 and a half years ago, I was a scared single mom visiting my son in the NICU. I didn’t know how we were going to face the battles ahead. I wasn’t strong; I had never experienced anything traumatic in my life, and the only time I’d been in the hospital or had surgery was when Jaxson was born. I didn’t know anyone in a similar situation. This was a whole different world I had never experienced before and it scared the hell out of me.¬†But, through various¬†challenges, traumatic events, and many¬†many tears, we both acquired strength (him more than me, obviously). Thats not to say that some things don’t scare me, or stress me out. I’m still a normal human with emotions; I still cry and get upset about things out of my control. But I’ve grown, and I’m not the same person I was when I first started this journey. Looking back, sometimes I don’t even know how I’ve made it this far. I get through it with a great support system, and because he depends on me. I have learned that its so much easier to be strong when you have someone to be strong for.¬†He can’t give up, so neither can I.

Knowledge.¬†If you were to ask me when I was pregnant how I saw my future, my answer definitely would not have been “Raising a medically fragile child; essentially becoming a nurse minus the schooling and pay.” But you play the hand you were dealt, and I’m proud to be here. I’m proud of the mother, and person I’ve become. One thing I learned right off the bat is that medical professionals (Doctors, nurses, surgeons, etc.) often don’t take you serious if you haven’t studied medicine. But, this life has given me plenty of experience. The things I do to properly care for Jaxson on a daily basis are far more complex than an average mother; anyone off the street couldn’t do it. So I think I deserve¬†some credit. I’ve learned so much about Jaxsons condition, and life in general. I’ve learned how to be an advocate for him, which I’ve found is so important.

Perspective.¬†Jaxsons diagnosis has given me a new point of view. Like I said in a previous post, this is far from what I thought motherhood would be like. Raising a child with a chronic (and/or life threatening) illness isn’t the same as¬†raising a healthy child.¬†Our routines are not the same, they have all the same needs and then some. You learn to be thankful for things that weren’t relevant before, and to not take a single thing for granted. We no longer worry about reaching milestones on time. We celebrate small victories, and cherish even the bad days (and believe me, there are¬†a lot of bad days), because you don’t know what will happen next. We¬†deal with all of the ER visits/admissions, all of the pokes and procedures, and days filled with doctors appointments. You come to appreciate all of the days not spent in a hospital, because its pretty much your second home. It’s a different life, but your child is worth every second.

Patience.¬†From sitting in a doctors waiting room an hour after your scheduled appointment time, to waiting on a transplant list for life saving organs and everything in between. I’ve learned that things will happen when they’re suppose to, and I can’t change that. Jaxson learns new things by repetitiveness; when he ¬†jumps, I enthusiastically say “Good job!” every time. He will point to something until I acknowledge it. I don’t get upset when he licks every single chip in a bag and then throws them on the floor for me to pick up. He has his own way of communicating, and at times it can be frustrating because I don’t know what he wants or how to make it better, but I stay patient with him. He has his own way of doing things and I’ve accepted that.

An Unbreakable Bond. I don’t mean to discredit anyone when I say this, because I feel like mothers usually have a pretty strong bond with their children anyway, but the bond you have when you parent a medically fragile child is indescribable. One of the first things my mom said to me when I first held Jaxson was “I love the way he looks at you.” His eyes were always locked on mine. To this day he will still stare into my eyes for what seems like an eternity. Every time we go to the ER, or are approached by someone new, he clings to me. He looks to me for comfort and answers. He looks at me with pure love. Something happens when you see your child incredibly sick and fighting for their life, it brings you closer. It makes you learn to appreciate every single day you have with them. We are what keeps each other going. We complete each other.

Through all of this, I have come to realize that the best things in life really aren’t things at all…

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Jaxsons transplant fund: https://www.youcaring.com/jaxsondahl-681028

 

2016; A year of accomplishments

Even though its almost 2 months into 2017, and i’ve posted a couple times since beginning the year, id like to reflect on 2016. Looking back, the only word I can think to describe it: chaotic.¬†We’re pretty use to the usual running to the ER for every fever and everything that follows- but we were not use to being discharged & admitted every other week for two months. It was even more chaotic with a newborn on top of it. I seriously started to dread Mondays because I knew a call was coming saying his sodium was low and he needed to be admitted. Then, to finally get that figured out and start battling anemia and needing blood transfusions every two weeks (which also prompted an admission every time).Not to mention he had more than a few line infections, procedures & different tests. It definitely had its tough times, but one thing i’ve seriously learned is that tough times don’t last, tough people do.¬†Last year could have been worse, but i’m glad its over & we managed to make it through. I’m hopeful that 2017 will be a much better year with¬†less frequent hospital admissions. And maybe, just¬†maybe this year he will get his transplant.

Despite all that he went through, and all the days spent in the hospital, I am beyond amazed at how well Jaxson has progressed in just a year. There have been some cases of regression, which is to be expected, but he’s bouncing back so fast. For starters, he gave up his beloved pacifier that he couldn’t go a second without, with no problems. He learned how to walk. He learned how to color and use scissors. He learned more signs. He’s learning his colors. He’s more willing to play with toys, and is starting to understand how they (and other things) work. He’s more aware of whats going on around him. Even though he doesn’t talk, he knows whats being said to him. He can answer most yes/no questions, and complete simple tasks. He’s learning how to dress himself. He’s learning how to use silverware (by trying to feed me, not himself). He’s finally willing to explore different textures and is even more comfortable around new people and unfamiliar environments. To look back at all of his previous therapy goals, and see how fast he met them and exceeded everyones expectations is incredible.¬†We still have a long way to go, but to think he wasn’t doing¬†any¬†of this a year ago makes me confident that he will¬†continue to thrive. 2017 will be his year. No matter how long it takes, these mountains will be moved.

Even his physical changes are remarkable. He looks so much healthier now! 

 

*UPDATES:¬†The¬†bone marrow biopsy taken last week came back normal, and looks extremely healthy. Again, I was hoping it would show¬†something so we weren’t left guessing. So since it showed that its making adequate amounts of red & white blood cells and platelets, Dr. Graham (hematologist) thinks that because Jaxsons liver and spleen are both enlarged, the blood cells are getting trapped in there, or he’s guessing recent viruses are causing his body to take longer to bounce back to normal. Because he has such a high amount of iron in his body, and blood transfusions only add to that, he wants to hold off an a transfusion as long as possible. There isn’t too much concern about his red blood cell count being low because Jaxson is still functioning normally & he doesn’t seem to be in distress at all because of it. He is¬†hoping this will correct itself, but will still keep a close eye on it.

Jaxsons transplant fund: https://www.youcaring.com/jaxsondahl-681028

 

Last week was unusually busy for us, Jaxson had an appointment every day. Monday, he went back to school after being off for three weeks. He had two weeks off for winter break, and missed the week before break due to his viral illnesses/line infection. After school, we went to the hospital for the ultrasound to see if he has portal hypertension. We were there about an hour, and he did well sitting still for that long. Later that evening after we got home, I noticed the bottom of his broviac was kind of cracked so I called his surgeon to see if we could be seen that afternoon. He was unable to get us in but scheduled an appointment for the following morning to look at it. Because I wasn’t sure if it was cracked all the way through to where it would pose a risk for infection, I took him to the ER just to be safe. Thankfully we were not admitted- which is a rare occurrence for Jaxson, and we were out about an hour later. The ER doctor and two nurses assessed¬†i, flushed it & drew back and determined it wasn’t cracked all the way through and so they put an occlusive dressing over it and we kept our appointment for the following morning. Tuesday, I kept him home from school because the only appointment Dr. Lacey (his surgeon) had was an early morning one. He looked at it and determined that it could be repaired, but since the chest x-ray taken back in December had showed that Jaxson was growing, it was almost coming out of place and it was better to just replace it. We scheduled surgery for that to be next Wednesday (today). Wednesday, we saw Dr. Graham (hematologist). He drew the normal labs to check his blood count, it was 6.7- still low but not dropping drastically. He also reviewed the results from the ultrasound and it didn’t show portal hypertension. A few weeks ago he had decided to wait on the bone marrow biopsy until after the ultrasound to see if maybe that gave us answers. So because it didn’t, I informed him that he would be going in for surgery next Wednesday for the broviac, and maybe that would be a good time to do the bone marrow biopsy as well. He agreed, and also stated it may be good to get a liver biopsy done as well, but he would discuss that with GI when we left. Thursday, Jaxson had school and his home therapy. Friday he had a GI appointment. She too went over the results from the ultrasound done on Monday, and she wasn’t surprised that it didn’t show portal hypertension, because it wouldn’t show up in a child Jaxson’s age and size until years later. I think we were all kind of disappointed, and in a way hoping that ultrasound would give us some answers as to why he’s been anemic. I was hoping this would be easy to diagnose and fix, but almost three months later, I’m realizing that is not the case. She agreed that a liver biopsy is needed, but disagreed with doing an open biopsy during surgery. In that case, they would have to cut him open and take a piece of the liver. She instead said we would do it through interventional radiology, which is less invasive and done by sticking a needle through to his liver. She also suggested getting a colonoscopy & endoscopy done as well. The only time she has done them is when he is actively bleeding, so it would be nice to get in there without a bleed so she can see things more clearly. Saturday we went to the Children’s museum and spent almost 5 hours exploring and playing. We had gone about two years ago, but left after an hour. That time, I remember leaving feeling somewhat sad, because it made me realize just how far behind he is developmentally. By two years old, he should have been walking, and willing to play with different toys and other children. That experience really made me realize and accept that Jaxson was going to do these things when he wanted to. I was so happy to see him enjoy our experience this time, and the fact that he lasted almost 5 hours was incredible.

Today was the broviac surgery. Although broviac placements and removals are quite the norm for Jaxson, and definitely not the worst thing he’s been through, its still scary. Every single time, the surgeon has to remind me of the risks involved and I almost always find him muttering the words “There’s a possibility of puncturing a lung.” Not to mention there are risks associated with anesthesia as well. So i’m usually pretty nervous until I know he’s okay. And because Jaxson is obviously nervous for these procedures, the anesthesiologist gave him versed, a sedative, shortly before taking him back. No matter how many surgeries and procedures Jaxson goes through, Its¬†never easy placing my child in a surgeons arms and watch as they walk through the doors of the operating room. It doesn’t get any easier, it gets harder¬†every. single. time.¬†

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We arrived at the hospital around 8:30am, checked in and went to the pre-op room. Surgery was scheduled for 10:30, but he wasn’t taken back until a little after 11. Dr. Graham (hematologist) was also present, and under the same anesthetic, was able to do the bone marrow biopsy. He stuck a needle about the width of a fork prong in Jaxson’s lower back. We will find out the results of that by Friday. It’s a fairly quick procedure, about an hour long and he was in recovery around 12:30. I was able to go back with him once he started waking up from anesthesia. He was pretty combative upon waking up, which is to be expected and he absolutely hated the IV in his arm, so that did’t make it any better. The nurse gave him some demerol to help settle him down but ultimately had to take the IV out for him to completely calm down. We noticed some bleeding coming from the new site, and so Dr. Lacey’s PA came in to look at it. She said they expected that to happen because they used some local anesthetic near the site. Just before we were about to be discharged, Jaxson’s temperature went up a little, but came back down a few minutes later. We arrived home around 3 and he has been pretty comfortable ever since. Dr. Graham said the broviac placement is usually more painful than the biopsy, but he hasn’t been in pain & besides the demerol given in recovery, no pain meds have been needed. I anticipated he’d be well enough to go to school tomorrow, but have since decided I’m going to keep him home so i can keep a close eye on the new site.

 

Thank you everyone for your continued thoughts and prayers, and a huge thank you to my mom for always being there when I need her, and even prepping my dinner for tonight.

Jaxsons transplant fund

https://www.youcaring.com/jaxsondahl-681028