We may be small, but together we’re stronger 💙

It’s been 20 days since we’ve returned from the Barth Conference in Florida. And I am still finding myself trying to work through all the different emotions that you experience when attending such events. Maybe it’s the fact that Wally turns eight months today and I’m feeling sentimental and emotional. Or maybe it’s because I am in awe of all the people we met and the members of the Barth Foundation.

These last eight months have not been easy. They have been so so hard. And when we received that Barth Diagnosis our world came crashing down. The fear and anxiety was mind numbing. I have never felt more alone than I did sitting in that hospital room, wondering if I was ever going to take my baby home.

When you’re in the hospital you have a lot of time on your hands. That time I had led me to google. In my search for information about Barth Syndrome, led me to Shelley Bowen at the Barth Foundation. It would be a couple weeks, a trip home, another trip to the hospital for failure to thrive, before I’d actually have the guts to contact her. What was I scared of? It’s funny now, looking back. Because Shelley… how can I even put into words what Shelley is. But she is simply inspiring. Amazing. The calm to your storm. I was terrified the day I called her. Our world still teetering all over the place. We were still questioning what Wally’s quality of life would be. We were scared. Sad. Gearing up for a g tube surgery!! And no one understood! No one could give us facts. Because Barth’s is so very rare even Wally’s physicians couldn’t give us much information. I was desperate to talk to someone who understood. Who could answer questions that I had. So I emailed Shelley, a member and founder of the Barth Foundation. And what happened next will forever have a special memory in my heart.

Shelley called me a couple days later and we talked for what seemed like hours. That conversation filled me with hope. Finally. I was finally having a conversation with someone who understand every single emotion I was feeling. Was answering questions before I even asked. Who was simply sitting on the other end of the phone listening. After that conversation, and crying may be a few tears, I told my husband we’re going to that Barth Conference. We need to find a way to make it work financially. And God love him he found a way for us to go.

Walking in to the conference on the first day I had no idea what to expect. I was so nervous to meet these people I had gotten to talk to over Facebook. Silly to be nervous, because my nerves was completely gone the minute I met Shelley face to face and she wrapped me in a hug. Over the next couple of hours we got to meet so many different people and families with Barth boys just like our Wally. The conversations were easy and they flowed. It’s hard to explain what it’s like to walk in to a room of people you’ve never met but immediately you feel at home. You’re surrounded by people who get what you’re going through. Who love your son almost as much as you do. It’s the most incredible feeling to be surrounded by so much love and kindness. And be surrounded by people who welcome you with open arms.

The week was emotionally draining but also inspiring. There was information and knowledge presented, tough conversations, lots of tears, but more importantly, a lot of laughter and love. I would sit and watch all of these amazing boys and men living with Barth’s and my heart felt like it could burst. These boys, and men, are simply the best. All the struggles they have to overcome but they do it with grace. It was truly inspiring to be able to witness the friendships, the bonds, the love, that has formed because of a disease called Barth Syndrome. And the people who make the conference happen?It’s truly a sight to see. All these amazing people coming together, to help find treatments and a cure for our boys. The planning and the executing. Making sure everything runs smoothly. I know it cannot be easy but we the Bastian Family thank you! Thank you for dedicating your time to help bring us all together! To help fight along side us for a cure for our boys! We are truly grateful.

I wouldn’t wish Barth Syndrome on anyone. But if we as a family have to walk this path in life, I am so very blessed and thankful to have these amazing people to walk it with. We love our Barth Family so very much! And we count down the days until we can all be together again. I believe a dear, new, friend of mine, Sue Wilkins, once said this, “We may be small, but together we’re stronger”. And she is so very right. 💙💚

A whole new family

As you all know, we are at that Barth Conference in Clearwater Beach Florida. We have met other families who are living with Barth’s. We’ve heard from Doctors and specialists who specialize in Barth’s. I cannot even begin to describe the amazing time we are having learning all about the disease our sweet Wally is suffering from.

But today, today has been by far the most emotional. A lot of tears were shed. Today, doctors, amazing people of the Barth Foundation, men living with Barth’s, and family members were able to discuss what it’s like living with Barth’s in a room full of people, most importantly people from the FDA!! To sit and listen to the other families tell their stories. To older boys/men living with Barth syndrome telling their stories and the struggles they live with everyday… to FINALLY be around amazing people who “get it”. These brave individuals were able to plead their case on why it is so important we need these clinical trials, medicines, but most importantly a cure!

I cannot even begin to express how much AJ, Wally, and I are humbled to be a part of such an amazing group of people from the first moment you meet them, automatically feel like family! I think about leaving on Sunday and not seeing our Barth family for two years and my heart aches. I cannot even begin to explain how amazing it feels to have people understand what we are going through. To understand the struggles, the triumphs, the fear, the worry, but most importantly the love we feel and go through on a daily basis. There’s no having to explain why Wally’s so small. No questions asked why he doesn’t take the whole bottle by mouth. Oh it’s medicine time? Wally needs a nap? Wally’s hot? We get it.

I’m having a hard time finding the words to explain how amazing it all is. I sit here with tears in my eyes trying to wrap my head around all the different emotions I’m feeling. To have this whole new family that we get to be a part of, that will understand everything we have and will go through, well let’s just say we are eternally grateful.

And let me tell you, these Barth boys/men are the most sincere, polite, kindest, compassionate, most down to earth people I’ve ever met! I can only hope and pray Wally takes after them. And the way they love the younger Barth Boys and take them under their wings melts my heart. Wally loves a particular Barth man John Wilkins who is living with Barth Syndrome. Johns mom, Sue is one of the founders of the Barth Foundation. Amazing family. Wally just lights up every time John comes and talks to Wally. It’s the cutest thing! I must remember to get more pictures!!

Well it’s been an exhausting week. But I just had to share my emotions and feelings about today. I’m still trying to wrap my head around all the different emotions. All I can say is, I’m so glad I contacted the Barth Foundation, but most importantly, Shelley. And I am so happy we were able to attend this amazing conference. It has truly been life changing.

Thanks for reading.

Wally snuggling with Mrs. Brandi! Another Barth Momma to an amazing son Deacon! A person who I so look up too and admire! (Don’t mind his PJS. Daddy brought him down during our women’s discussion session 🤣🤣)

Ear infections, packing, & teething, OH MY!

Boy or boy, where do I start?

Well, it has been a long interesting month that is for sure. We have been busy getting ready for our trip to Florida, Wally turned 7 months (still cannot believe it)! 😍😍 And we have been dealing with an unexpected ear infection. 😭😭 A couple of weeks ago Wally became really irritable, whiney, pulling on his ears, just all around uncomfortable. For the first couple of days I chalked it up to teething. I was so hoping it was just teething. Ear infections are rough for any child, but for Wally and his sensitive stomach, the antibiotic just tears him up :(. But unfortunately on the fifth day, the symptoms had not gotten any better. So it was off to the doctors we went. Diagnosis-ear infection :(. I was so bummed out because it had only been exactly one month since his last double ear infection! (We are going to be talking to his doctor about having his blood work drawn more often to check for neutropenia.) We started the dreaded antibiotic (which gives him such bad diarrhea), and he slowly but surely got better. It’s funny because even though in pain and not feeling well, Wally’s personality comes out more and more every day. He never fails to make anyone who comes across him laugh and smile! He truly lights up our life.

On top of the ear infection he is also teething! When you are pregnant, everybody always has their two cents on what to do, what not to do, what to expect, but why in the heck does no one prepare you for the monster that is the teething monster!!👹 I mean my goodness, it is terrible! Grumpy, drooling, biting, chewing, just all around miserable. Add on the ear infection and lets just say it has been a long two weeks haha. But he’s getting stronger! He holds himself up so well now! Still is not sitting up on his own, but we know that will come with time. I must admit we haven’t been very diligent on the solids. Mainly because he has been such a mess I dreaded causing a belly ache on top of everything else he has/had going on. Although, he has showed more interest in what we are eating! And loved chewing on a waffle fry haha. But I am going to make it my mission to start being more consistent when we return from our trip!

Speaking of trip, can I just say, packing for yourself is one thing, but packing for a 7 month old, a medically fragile one at that, is down right exhausting. I have been so anxious getting ready for this trip, I have to remind myself to breathe most days. I just have been so afraid that I am going to forget something that requires Wally to survive and be well. This includes his medicines and feeding supplies. But I made a ton of lists! And that has helped tremendously! For all of you reading that don’t know, we are attending the Barth Conference in Clearwater Beach Florida! It will consist of other physicians and families who also have sons living with Barth Syndrome. We are so unbelievably excited to meet these wonderful people and were hoping to find out as much information as we can! I must say though, I am nervous how this trip is going to go. We are flying, and with Wally just getting over an ear infection I worry about his ears popping! Not to mention the anxiety being away from home and his routine! The thing with Wally is, he is so darn particular. From how he sleeps, to where he sleeps, to everything in between! I am hoping since we will be so busy and there will be a ton of people he will love the attention and go with the flow. From my lips to God’s ears! 😉

Thank you all for continuing to follow our journey. Wish us luck and pray for safe travels! ✈️✈️

Tough times never last

I know I haven’t posted an update in awhile. Mainly because… well life has been hard lately. I’ve been struggling a lot mentally. Having and dealing with anxiety and depression with very little sleep is mind numbing. Some days the exhaustion catches up to me and I have a tendency to retreat into this dark hole and sometimes it takes me awhile to get out of. Before Wally when I would have these episodes I would just sleep it off. Well as we all know that’s not possible with Mr. Wally J.

So I spend the dark moments mainly crying, begging God for strength, and trying to find the positive in every day. The truth is, being a mom to Wally is the best thing I have ever done. And for the most part he is doing wonderfully. But being the main care giver can take its toll. There are some days I don’t even recognize who I am anymore. I still haven’t lost all the baby weight and most days I don’t even look in a mirror because I’m just disgusted with how I look. There’s no time for the things I used to enjoy. No time for friends (the little friends I now have). Family. Even my dog and husband. I cannot even remember when is the last time I did something for myself. My days are consisted of taking care of Wally, drs appts, drawing up medicines, filling bottles, washing bottles, cleaning the house, making sure everyone is taken care of that I realize…. there’s no time left for myself. And than there’s the worrying. Worrying that Wally’s getting sick. Worrying that his heart will stop beating. Worrying about why he doesn’t sleep. Worrying about the future and what that may look like for him. Worrying about whether or not I should be doing something different for him. Is he hurting? Is he happy? Scared? My mind is always going in a thousand different directions and I can’t even begin to describe how exhausting it is.

Now don’t get my wrong. I have an amazing husband who is ever so patient with me and my crazy self. He helps as much as he can. And Wally just adores him. We also have people offering to help. But the problem I’m having is letting go of the control. Letting people help. Because I have this notion that no one can do it better than I can (not realistic). Wally can be difficult and he’s very particular and when I think about someone else watching him I panic. My heart literally races. I feel nauseous. Will he be good? Will it go ok? Will he wonder where I am? Do they know exactly how to swaddle him? Exactly how to feed him? Will they know when he’s tired or in pain? A lot of this… isn’t realistic. It’s my anxiety that I need to get under control. I need to learn to let go just a little bit.. But it’s hard. Oh so hard. And I struggle with it daily. As I type this with tears in my eyes I realize how big of a mess I am as I tell myself to just breathe.

I know a lot of the people who are close to us probably think I’m crazy. Some I believe are in denial of Wallys diagnosis. It’s easy to be in denial when he looks normal and you aren’t living the day to day with him. And maybe I am crazy. Actually I probably am just a little bit. I never would have imagined this would be my life. Never in my wildest dreams. But does anyone really think they’re going to lose a child? Or birth another child who will end up being medically fragile?

Every day I’m working on my anxiety. Working on letting go. It’s a rough road and times are tough, but I know in my heart it’ll get better.. And what will keep me going until then is Wally hitting a milestone. The way he looks up at me and smiles. That full belly laugh he does that makes my heart sing. He is my strength. He is my motivation. He is my will to keep on keeping on.

“Tough times never last, but tough people do.”

It’s ok to not be ok

Sleep. What is sleep? I feel like I haven’t slept since Walter has been born. He’s always been a terrible sleeper. Waking up frequently. Screaming when waking up like he is pain. It can be exhausting, overwhelming, and frustrating. Along with the wakings, theres also the every three hour feeds. For those of you that do not know, Wally ended up back in the hospital a week after we got home for failure to thrive. He ended up undergoing surgery for a G-tube. We are now on a strict schedule of 4 oz every three hours during the day and 4 oz every four hours at night. We hardly ever make it to the four hours, so it ends up being every three hours at night too. My husband works third shift four days a week, and second shift one day a week. So four out of the seven days I do the night wakings and feedings by myself. It makes for some very long, sleepless nights. Most days I feel like my head is in a fog and I cannot think straight.

I’m a person who has always loved sleep and have always needed a lot of it. So going without sleep is hard for me. You would think after six months, my body would be used to it by now. But unfortunately that’s not the case. It’s like having a newborn for six months straight. It affects my health and it affects my relationships with my loved ones because I’m so tired, mentally, emotionally, and physically, that when I do have a free moment I just want to sleep.

On June 20th Wally has his six month check up and the dreaded shots 😩😩. We plan on discussing with our pediatrician the idea of a sleep study or may be being seen by a neurologist. Wally constantly twitches, moans, and cries in his sleep. He is always restless and just acts like he cannot sleep well. With Barth Syndrome the boys can have muscle pain and muscle fatigue. We wonder if he may be having muscle pain which causes him to not sleep well.

The nights can be hard and long. There are times where I end up in the bathroom on the floor just crying because I just want him to sleep so I can sleep. And than I cry because my heart hurts for him. I want to fix what’s causing him to not sleep and I can’t and it’s the worst feeling in the world. My poor husband… there are many nights he gets angry and sad texts with how much I am struggling. Luckily he works in town so he can stop in if he isn’t busy. For that I am grateful.

The other night was an exceptionally hard night. This is hard for me to admit so please be gentle. Wally just got over a double ear infection almost a week ago. Ever since his ear infections he has not been sleeping. And when I say not sleeping, I mean waking every hour screaming. (We had his ears rechecked. They are fine). Well this certain night, I was exhausted. I had nothing left to give. I tried everything to get him to sleep. Tylenol. Walking. Rocking him. Laying him in bed with me. He would fall asleep but than awake again screaming. Every time he would wake up screaming, I got more and more frustrated. Why oh why wouldn’t my child sleep? I remember the tears would start forming the minute I would hear the first scream. There was one waking that I had to go outside on our front step and just take some deep breaths. And than I let the tears fall as I set on our front step sobbing as my child cried inside. I would think to myself I can’t do this anymore. I can’t help him. He deserves better. And than I thought about my husband being able to get a break by going to work and than being able to sleep during the day without any interruptions. And I got mad. I was so mad. Mad that he got a break. Mad that he got to sleep. Mad that I couldn’t help my child. Mad at God for making me a carrier of Barth syndrome and passing it on to my boys. But after a couple of minutes of throwing myself a pity party, I stood up and went back inside, walked in to my sweet baby’s room, sat with him in the rocking chair, and sobbed. I remembered praying over and over to God for strength and patience. Like that night there are many nights where I feel so alone. That all this responsibility falls on my shoulders and it’s so exhausting. Mentally, physically, and emotionally exhausting.

Sometimes I wonder how I’ll make it through another day. But than daylight comes and I look down in to the sweet face that is Wally J and he looks up at me and smiles and my heart feels like it could explode. The tiredness, the long nights, the tears, the anger forgotten. Because here is this sweet little boy who was (excuse my language) dealt a really shitty hand in life but continues to smile. Who looks at me like I’m his everything. Who even though, doesn’t sleep well continues to conquer each day with a smile and a coo.

The nights may be long and hard. But the days are full of smiles and laughs. Happy moments watching Wally discover this world. The way his eyes light up when his dad or I walk in to the room. The way his eyes get really big when he gets excited about something. The amount of love I feel watching AJ with him. The overwhelming happiness I feel when he reaches a milestone. The kisses and the snuggles. He goes through every day like he hasn’t a care in the world. He is happy, and for that I am grateful.

Wally has forever changed my life. He makes me want to be a better person, a better wife, daughter, nurse, friend. He gives me the strength to go on. He shows me every day with his smile that life isn’t all that bad. The love I feel for him replaces the tiredness that I feel every day. This little boy needs me. He needs me to be strong. To continue to fight for him and for a cure. To be his voice. I will always try my hardest to do all of that and more.

A good friend is always telling me, it’s ok to not be ok. And as hard as that is for me to admit, I am learning to not be so hard on myself. To give myself a break. And to remember this too shall pass. And even though I am always tired, the good out weighs the bad. The happy days replace the tired nights. I’m so lucky Wally is here. That he’s doing well. Unfortunately some parents aren’t so lucky.

So I will continue to find the strength through Wally and his smiles to make it through each day. I will continue to count my blessings and fight like hell to be the mom Wally needs me to be.

As always Wally’s warriors, thanks for reading.

Going Home

23 days. 23 days we spent at OSF Children’s hospital. 23 days without sleeping in my own bed. 23 days of not stepping foot in my house. 23 days of not getting to be with my fur baby. It was the longest 23 days of my life.

You see, Wally’s always been a terrible eater. Very rarely did he ever take more than 2oz at a time. He had an extreme tongue and lip tie that we had snipped and before all this Barth stuff we thought it was just because of that. Well while we were in the hospital he fell off the growth curve. And when we found out he had Barth syndrome and that his heart wasn’t functioning like it should the concern was getting enough calories in him to grow. They thought he wasn’t taking enough by mouth because for a child in heart failure eating for them is like running a marathon. Their hope was that with meds and hopefully improvement of his heart function he would start to eat more and not get so tired. Well after doing research Barth boys do not metabolize like we do. They do not grow like normal babies do. It’s possible to over feed them and when that happens they vomit. They are known for having belly aches, which Wally does. And for some reason they tend to not tolerate a lot of food. So we spent a lot of extra time in the hospital trying to figure out a happy medium of what Wally could tolerate and how we were going to get extra calories in him. Because the doctors did not know a lot about Barth syndrome, it was all trial and error. An NG tube was eventually placed so we could give his body a rest. He hated it. It was the absolute worst. I mean I wouldn’t like a tube up my nose and down my throat either but man he really really hated it. We tried an oil called MCT oil. It basically was to add extra calories. And of course Wally did not tolerate it and it caused severe belly aches. We tried different formulas. It was exhausting. Every night Wally got weighed and the number was always the same, 10lbs 15oz. It was the most frustrating thing because he couldn’t go home until he started gaining weight. And for weeks that just did not happen. AJ and I thought we were never going to see 11lbs.

Over time Wally slowly started taking a little more by mouth. They eventually agreed we could take out the NG tube. Which it did nothing for him anyways because every time we fed him through the NG he would vomit. Which in it self was frustrating. On the plus side, he was tolerating his meds. And by the grace of God his heart function was coming up!

Slowly but surely Wally gained enough weight where they decided we could be followed by his physicians as outpatient. Hallelujah!! We came in to the hospital with an almost two month old, a virus, one physician, and no meds. To leaving the hospital with an almost three month old, a genetic disorder, five physicians, and five medications. It’s still surreal to think about.

On February 25th, the doctors finally decided we could go home! AJ and I couldn’t pack up our stuff fast enough. We were so excited to go be a semi normal family again. We were ready to figure out what our new normal was going to be. It’s the little things people take for granted. Like how excited we were to sit Wally in his swing again, to play with him on the floor, to put him to sleep in his own room. To hold him with out all the tubing and wires. To give him an actual bath! You never know how great you actually have it until it’s all taken away from you.

With that, we knew Wally’s fight wasn’t over. We knew that our days would be consisted of a lot of worrying, trying to get him to gain weight, drs appts, figuring out where we were to go next. But we were just happy to be able to go be in our own home and to be able to sleep in our bed!

But with that excitement came the fear. The fear that something was going to go wrong. The fear of not having the nurses and doctors right there readily available. Fear that Wally’s heart could stop, that he could stop breathing. All the cardiac meds we had to now give ourselves. The dr appts we had to schedule. The fear of the unknown. People would say, “But you’re a nurse. You got this.” First of all yes I’m a nurse. A very newly graduated nurse. A nurse that works on Postpartum taking care of moms who just had their babies. I do not work with sick patients. I do not give cardiac meds. And I wish some people would realize nurses do not know everything. It’s impossible too. Plus giving high risk meds to your own child is a totally different ball game.

There was also the fact that Wally was still having belly aches. He still wasn’t sleeping. All of it was terrifying. I cannot even to tell you how many nights I laid awake just staring at him, taking in and memorizing every inch of his face, praying to God, “please let his heart keep beating, please don’t take another one of my babies from me.”

February is usually a month surrounded by hearts, love, candy, date nights, cards and gifts. Our February was spent in the hospital praying God wouldn’t take our baby from us. My life is nowhere near what I thought it would be. But I have the best husband and best friend anyone could ask for. An amazing little boy up in heaven watching over us all. The best fur baby. A roof over our heads, food in our bellies. And our wonderful Wally is here and thriving. And by the grace of God his heart is beating stronger than ever. ❤️❤️

“What gives me the most hope every day is God’s grace; knowing that his grace is going to give me the strength for whatever I face, knowing that nothing is a surprise to God”

Barth Syndrome

The number 13 is not a good number for our family. November 13th 2015, we lost our first born Henry. February 13th 2018 Walter got diagnosed with Barth Syndrome. I apologize, this post may be long, bare with me.

After Wally was born the neonatologist and our pediatrician both agreed that Wally should see genetics just to get checked because of what happened to Henry. We weren’t 100% sure what had caused Henry’s death. We never dwelled on that appointment because, well, maybe we were in denial. Maybe we didn’t want to believe that something could be wrong with Wally too. That appointment was scheduled for April. Because of everything going on with Wally we were able to meet with the genetics team while in the hospital. Thankfully. The genetics counselor Jen who visited us that very day we got the news about Wally’s heart is absolutely amazing. So warm. So compassionate. She wanted to run a blood test that for the life of me I can’t remember the name. But the test consisted of my blood, AJs blood, and Wally’s blood. It was a full DNA sequence test that would closely look at all three of our DNA. Jen had said that this test was super expensive, 14,000 to be exact, for one blood test, mind boggling. They actually had to get OSFs approval before sending it. It was sent to Mayos and she said we would hopefully have an answer within 5-7 days. The answer came in 5 days.

While we waited we got to know Wally’s cardiologist very well. Dr. Jantzen who we now call Dr. J. Amazing physician and an even more amazing person. We just adore him and are so thankful he is Wally’s cardiologist. We had a lot of talks about what it could be. What he thought it was. He talked about how we couldn’t really move forward until we had an answer for why this was happening. We talked about the guilt AJ and I felt as parents for not getting an echo done when Wally was born due to our history. He reassured us that we don’t know when Wally went in to heart failure. The echo could have been normal after birth and we would have been given false reassurance. Although this didn’t make it all better, it did help ease some of the guilt AJ and I felt. Remember in my earlier post where I talked about how Wally’s color always seemed to be off? The fussiness? How he always seemed to be in pain? Uncomfortable? Well now we know why. Dr. J said he was probably experiencing chest pain and muscle aches. Absolutely breaks my heart to think he was hurting and I didn’t know. I still to this day carry around a lot of guilt on what I could have done differently. I’m trying to cut myself some slack… but it’s hard.

The hardest discussion that the three of us had was discussing how RSV essentially saved Wally’s life. Heart failure in infants is hard to detect because they cannot tell you their symptoms. Most parents don’t realize their babies are in heart failure until it’s too late. Without being hospitalized for the RSV, a couple months down the road with Wally’s heart deteriorating rapidly and with no medicines, Wally would have gotten very sick. Probably even going in to cardiac arrest at home. At that point it would have been heart transplant or Wally would have died. Dr J said how lucky we were and how he had hope we had caught it early. With the help of medicines Wally could thrive. Still to this day I cannot process how lucky we are that Wally got RSV. To think how sick he would have gotten, without our knowledge, makes me feel physically ill. I try my hardest not to go there, to those thoughts. He’s here and he’s ok. That’s all that matters.

Five days after getting our blood drawn, we were sitting in Wally’s hospital room when in walked Dr. J and Jen. Jen has told us previously that if the test came back normal she’d call us. But if something came back abnormal that she’d be by to discuss it in person. So seeing her, we knew something had come back on the test. I remember looking at her and saying, “Ok what is it? Is it treatable? Fixable?” She said “Wally has a syndrome call Barth Syndrome.” I remember thinking Barth Syndrome? What the hell is that? Of course our luck would have it that it is super rare and not even the physicians on Wally’s case knew much about it. The whole conversation is sort of a blur. Questions were asked. We were told not to google. (Of course I did). Jen explained in detail all that she knew. For you guys reading this, I will post the definition that is found on the barth foundation website. “Barth syndrome a serious X-linked genetic disorder, primarily affecting males. It is caused by a mutation in the tafazzin gene, resulting in an inborn error of lipid metabolism.” A lot of people think Barth syndrome is a heart disorder. It is not. It is a disorder that affects the whole body as a whole. Cardiomyopathy is just one of the many symptoms of it. Other symptoms include muscle weakness, neutropenia, growth delay, exercise intolerance (due to fatigue) and cardiolipin abnormalities to just name a few.

So we had a diagnosis. But that’s really all we had. An answer but not really an answer. Jen and the doctors couldn’t really tell us what long term would look like for Wally’s life. They did know that some boys do well on medications and other boys do not. They said they would have a better understanding of what path Wally would take within the first year of his life. A lot of uncertainty but not only did we have an answer for Wally but after two and half years we finally had an answer for what happened to our Henry. Silver linings.

As much as I didn’t want there to be something wrong with Wally, I felt relief. Relief that I wasn’t crazy. That there actually was something wrong with him. Relief that we caught it in time. Relief that we could now start fighting for him to have the best possible life even with these circumstances. The days that followed were spent coming to terms with now being Barth parents and what that would mean going forward. It was spent researching, titrating meds and the oxygen, trying our best to explain it to friends and family, loving on Wally, questioning the what if’s, mourning the loss of Wally having a normal life, but most importantly thanking God he hadn’t taken Wally from us and thanking Henry for watching out for his little brother.

****Sorry it took me this long to get this post out. Wally got a double ear infection and it has been a rough week. Once again, thanks for reading, following our journey, and for loving us. Love you all! ❤️❤️❤️