Our trip to Baltimore and test results

It’s been awhile since I shared what’s been going on in our wonderful world of Wally. I wish I could say it’s because we have nothing new to share. But you all know us better than that 😂😂. There’s always something with our Wally. I haven’t shared because honestly, it’s been such a crazy and exhausting month not even sure where to start. There are so many emotions running through me that I am still processing all the information and answers we have gained. But I shall do my best!

AJ and I both work full time. Wally has had surgery and undergone two big tests! We’ve had pictures, Halloween festivities, anniversaries, a wedding, birthdays, a fall party, we each have gotten sick, and we flew out to Baltimore all within a month. (See why I’m exhausted? 😴😴) But alas we survived!! For those of you that don’t know Wally had ear tubes put in and had his adenoids taken out. He always seems to recover slower than most kids so it took about two weeks for him to feel better, poor guy. He was supposed to have a swallow study in the middle of October but the little stinker refused to drink the dye so we weren’t able to do it.

He than had a sleep study at the end of October. And that was really rough. I think I cried more than he did 🤦🏻‍♀️. The six hours we were there they got 2.5 hours of sleep which I guess all they need is 2 hours to diagnose. So thank goodness! We finally, after waiting for what seemed like forever, got the results today. Moderate obstructive sleep apnea 😔😔. I had a feeling it was going to show something but I guess I didn’t expect the results to show a moderate case. The nurse actually said it was probably severe but the adenoid removal probably helped some. The plan is to put him on an 1/8th of liter of oxygen at night and to repeat the sleep study in three to four months. 😩😩. If that doesn’t help we go back to ENT to discuss our options. I know what you’re thinking. Finally! Some answers. And yes. I am happy that we finally have an answer after 11 months of poor sleep. But I find myself feeling sad. My heart hurts guys. This brave, strong child of ours, has been through so much in his short little life. It’s just another thing to add to the list. And it’s scary to be honest. To know your child stops breathing and there’s nothing you can do about it….Not exactly sure how I get any sleep at night. We shall see how the oxygen goes. I hope he won’t care that he has a thing in his nose, but if you know Wally, he’s stubborn and strong willed. Wish us luck 😂😂.

And finally our trip to Baltimore!! The only Barth Syndrome clinic in the WORLD is held quarterly in Baltimore Maryland. Well we decided in September we were making the trip to Baltimore to see and establish with doctors who know Barth Syndrome! They hold the clinic at the Kennedy Krieger Institute (which is a part of John Hopkins)! We were very lucky they squeezed us in and that we could come up with the funds to go! It was an exhausting trip in the sense that we were busy. We drove up to Chicago Sunday. Flew out Monday. The clinic was held all day Tuesday. And we flew back to Chicago and drove home today (Wednesday). On top of that Wally is cutting two teeth and he has a cold. Exhausted is an understatement! But we’re feeling very happy that we got to go! It was so so worth it. Wally was able to see the nutritionist, physical therapy, hematology, cardiology, a metabolic doctor, and we spoke to genetics! I’m happy to report Wallys heart function is still in normal range!! 🙌🙌. Physical therapy is impressed with what he is able to do. Dr. Vernon (metabolic doctor) did recommend a dilated eye test for Wally to determine if he has fluid on his brain or behind his eyes. Why you ask? Because he has a big head 🤦🏻‍♀️😂😂. She said it could be because he takes after me with a big head 🤷🏻‍♀️🤷🏻‍♀️, but it’s something just to make sure. And it’s better than putting Wally through an MRI! Overall, the doctors we saw are impressed and satisfied with the care Wally is getting back here in Peoria!! It’s such a relief to know we are doing exactly what we should be doing. And that the doctors there and our doctors here are in agreement with Wallys care. They said he looks great. And they couldn’t believe how busy and attentive he was. He literally soaks in every aspect of a room. He is the nosiest 10 month old I’ve ever met. But he charms and smiles at everyone he comes across. We couldn’t love him more.

We did get to meet some other Barth families and thanks to the Woodwards for organizing a dinner. It was great to see them and their boys are the cutest! Wish we all lived closer together!! Being around our Barth family always brings this feeling of peace and comfort over me. In a world where it’s always something and you feel like you could lose control, they get it. They understand. We are so blessed and thankful for the Barth Foundation. For bringing us all together!

So Wally warriors, that’s where we are at. It’s been a long and busy month. And honestly, so glad it’s over 😂😂. Now we wait for the oxygen. Hopefully he will tolerate it. I will be running a T-shirt fundraiser in honor of Wally and Henry’s birthdays. Speaking of, I need to print out and send out his birthday invitations 😱😱!! (Seriously blows my mind he’s going to be one!) Henry’s birthday is also next week. Crazy to think he would have been three. I’ve been so busy that I haven’t had much time to think about it and that in itself makes me sad. I’ll be writing a whole post on our sweet Henry. Stay tuned. This time of year is always hard for us. Hug your babies tight.

Also on the do list is my annual review for one of my jobs (I’m getting there Corrie 😬). Christmas shopping. Birthday shopping. And cannot forget thanksgiving is right around the corner! Whew. I’m exhausted just thinking about it all. I’m telling you, it never ends. I need a vacation. Or a bottle of wine. Either one will do! 😂😂.

Thanks for reading!! Love and prayers to you all!

Wally’s momma 💕💕


Our visit with the Pulmonologist and lab results

This may be my longest post yet. Bare with me. 😬😬

By now everyone who reads my blog knows that Mr. Wally J has never slept well. Ever. Nine long months of little sleep for both Wally and I. We received a referral from our pediatrician for a Dr. Mannaa (Pulmonologist who specializes in sleep) back in June to inquire about a sleep study. But unfortunately he is a very busy man and they could not get us in until today. After the failed Ph test (failed in my mind) I almost cancelled this appointment. Why you ask? Because I have been throwing myself a pity party. And quite honestly I am feeling pretty defeated. I am so afraid that I am going to continue to put Wally through these tests only for them to come back normal. I have been feeling pretty crazy and I wasn’t sure if he even really needed to see a pulmonologist. But I decided last night that no harm could come from hearing Dr. Mannaa out, to see what he had to say. So off to the appointment we went!

If anyone of you in our area, reading my blog needs to have a child seen by a pulmonologist, I definitely recommend Dr. Mannaa. He was so personable and definitely knew what he was talking about. He took the time before our appointment to go over Wally’s (rather lengthy) history, researched Barth Syndrome in detail, and already had an idea of what he wanted to see done before he even glanced at Wally. He made me feel comfortable, not crazy, and agreed that something is not right with his sleeping. He promised me that he would do everything in his power to get to the root of Wally’s sleeping issue. But not only that, he wants to look in to other things as well!

Little back story. Barth boys tend to have very distinctive facial features. Well our ENT (Dr. Gootee) noticed that Wally’s chin is a bit recessed. Meaning it sits farther back on his face than most chins. (I posted a side picture below to help visualize what I am talking about.)😊

Dr. Mannaa also noticed this and said when a person sleeps all your muscles relax, even your tongue. And because Wally’s chin sits so far back hes wondering when he is sleeping if his tongue relaxes over his airway causing obstruction. Another important thing he pointed out was that due to Wally’s hypotonia (low muscle tone) he’s wondering if that is affecting his sleep at all. (Meaning when he’s in a deep sleep, with his muscles really relaxed, he doesn’t have the muscle strength to circulate the carbon dioxide out of his lungs). If this is happening he could startle awake, kick his legs, wake up screaming (everything he is doing) because that wakes the muscles up and basically says, “hey! You need more oxygen man!” 😂😂. Another sign of this is sweating!! (Wally has never not woken up drenched in sweat).

So what do we do? Well he wants a swallow study done (Wally’s never had one) to get a good look at what’s happening when he’s eating and make sure everything looks ok. He also wants a sleep study ASAP. These tests will be schedule next week hopefully for sometime in October. He also talked about Wally’s risk for infection. And with flu and pneumonia season fast approaching, and because of his hypotonia, he wants Wally to have a vest. The goal is that he would wear this vest (that shakes) when he sounds congested or wheezy to help break mucous up. By breaking up the mucous it will be easier for him to cough, and the end goal is to hopefully prevent pneumonia. Overall I feel good about the appointment and that we have a game plan.

Whew. 😪. The appointment was a lot. And kind of overwhelming. But FINALLY a doctor made me feel that I wasn’t being crazy! He is concerned! And that puts my mind at ease that these tests are necessary. So yes… more tests. But hopefully we can get them done as soon as possible and get answers. I also want and need to clarify…. I do not want there to be anything wrong with our sweet Wally J. But…obviously there is something troubling him. And all I want is answers so we can find a solution. He needs to sleep to rest his heart. He needs to sleep to keep from getting sick. He needs to sleep to grow. I will do everything in my power to make sure he can get the sleep he needs.

So that’s where we are at. We also had a CBC drawn yesterday due to low grade fevers, he’s been pale, and pulling at his ears (left ear drum was red. But not infected. So at that time yesterday we decided to wait and see and not move forward with antibiotics). Well… we got those results back today thanks to our amazing friend Cassie. His white blood cell count was normal. Even better than last weeks count (yes we had his blood drawn last week too. Trying to get a look at how he trends). But, his neutrophil count was even lower than last week. Still in the 900s. But definitely lower. What does this mean? Well it doesn’t scream DANGER but it does put him in the moderate risk for infection category. 😔😔. Wally’s ANC (absolute neutrophil count) has never been below a 1000 (that we know of) and now the past two weeks he’s been steady in the 900s. Well Dr. T, even though he doesn’t currently have an infection, wants to do a round of amoxicillin as a precautionary. Blah! We hate antibiotics. But we hate infections and hospitals more. So we are going to do the round of antibiotics and hopefully Wally doesn’t catch anything. This is why it’s sooo important to vaccinate and keep your children home when they are sick! Wally is vaccinated, we take all the precautions, but he can still get very sick. And unfortunately a common cold for him could land him in the hospital. And as much as we love our OSF nurses 😉 we do not want to go back to the hospital.

Sooo this was wayyyy longer than I anticipated! 🤷🏻‍♀️ But this is what’s going on in our world! More tests. More antibiotics. But hopefully soon… answers.

If you’ve made it this far… thanks for reading. Thanks for loving us! We wouldn’t survive this crazy life without our Wally warriors!

Love to you all!

Wally’s momma 💕💕

Where do we go from here?

Frustration. Sadness. Confusion. These are only some of the emotions I am feeling today. It has been a long weekend and an even longer start to the week. Wally has been screaming in pain, super whiny, clingy, and we have no answers to show for it. I spent all day yesterday on the phone with his care team trying to figure out if his behavior was normal teething behavior or if something else was going on. Is it teething? Maybe, he is cutting a tooth. But is it something else? Honestly at this point I do not know if we will ever have the answer to that. Because… another test done and nothing to show for it.

We made an appointment with the GI yesterday, convinced that the results from his Ph study were going to come back that he has severe reflux. If it could be anything we wanted it to be that. We really just wanted answers for why our child doesn’t sleep and has days where all he does is scream and cry. But once again we were left feeling defeated. The study came back that he was not refluxing. The only thing it really showed was that he swallowed air 222 times in a 24 hour period. Ok, what does this mean? To be honest I am not sure. Dr. Khaled can be hard to understand at times, and I do feel like there is a language barrier. When he was explaining it to me I only got bits and pieces. Obviously swallowing that much air can cause discomfort, especially if it goes beyond the stomach and in to the intestines. But it is the question of why is he swallowing that much air that we do not know or understand. Dr. Khaled’s solutions were to start another probiotic and to vent the g-tube more (We’ve tried a million probiotics and we vent the g tube often!) 😢😢. When I asked him why does table food cause him so much discomfort than? His response was to do blood work and determine if he has any food allergies. Another test to put my baby through that will probably come back normal as well.

I cannot even begin to describe the frustration that AJ and I feel. Here I am putting my sweet nine month old through test after test. Tests that my husband does not even want to do. And they all come back normal! We have nothing to show for it. It was all for nothing. I am exhausted. Run down. Drained-emotionally, physically, and mentally. And if one more person says, “He has come such a long way. He will get there”, I may scream. It has been nine months of these GI issues and no sleep and no one can tell us why. I am starting to think maybe I am just crazy. Like, what am I doing? But these doctors and people who like to put their two cents in, do not lose sleep at night. They do not have to sit there watching your baby scream in pain and there is nothing you can do about it. They do not have to sit back and watch their baby suffer and realize there is nothing they can do about it. You see… they, like all of you, get to see the happy, smiley, Wally. No one understands. No one gets it. And it is frustrating and maddening to the point I have cried a lot in the past two days.

Usually I try to think positive. And maintain the “This too shall pass” outlook on life, but you can only take so much before you break. I am close to that breaking point. I am just not sure where we go from here. I’m second guessing every decision I have ever made for Wally. I feel like (excuse my language) a shitty mother. Moving forward, I do not know what is the best thing for him. “Follow your gut” is what people say. Well my gut so far, has led me to the place we are at now, and look where that has gotten us. Nowhere. All I can do is keep praying and hopefully God will hear my prayers.

Wally’s Momma 💕💕

Neutropenia and our visit with Dr. T

A lot of you are aware that we had our appointment with the hematologist last week. I know some of you are probably wondering how it went. I unfortunately wasn’t able to be there in person due to having to work. But luckily I have a wonderful husband who took Wally and I was able to be on speaker phone.

I may be repeating myself, but for those of you that do not know Wally is very high risk for infection and can become neutropenic very quickly due to his Barth Syndrome. Neutropenia is defined as, “A condition associated with a low white blood cell count. These types of white blood cells, called neutrophils, are made in the bone marrow and fight off infections. If there is a decrease in neutrophil production, an accelerated usage of neutrophils, or an increased destruction of neutrophils, the risk of infection increases, particularly those caused by bacteria or fungi.” We inquired an appointment with a hematologist so Wally could be followed more closely. Something as simple as a cold, or a common virus that most children get over quickly, could mean a hospital stay or even worse for a boy like Wally.

We had heard chatter that Dr. Tarantino was the best hematologist in the area. Luckily because of great connections we were able to get an appointment sooner rather than later. I was kind of sad I missed meeting him in person but let me tell you, the chatter we had heard was correct. We were not disappointed. The minute Dr. T walked in the room he sounded like a man who was very intelligent and knew what he was doing. Not only that but he was really interested and even seemed enthusiastic about learning more about Barth Syndrome. He spoke a lot about what he researched and learned about Barth Syndrome thus far and that makes our hearts sing! It is so refreshing walking into a new doctors appointment and not having to catch a physician up to speed on what is Barth Syndrome. To us it shows he’s interested, that he cares, that he’ll do anything he’s physically capable of for Wally. And that’s all we as parents can ask and hope for.

For kids that can become neutropenic there is a threshold so to say, on when you need to take them to the hospital. Dr. T talked a lot about this threshold and what he would like to see happen. Most of the time, we can tell when Wally is getting sick. He sleeps better 🙄🙄. He’s quiet. Almost like he’s in a daze. Dr. T would like us to call him when we notice this so we can get Wally in for a blood draw to have his neutrophils checked. We know Wally’s neutrophils have been low before but they have not been in the dangerous range thank the lord! But just because it has not happened yet…. does not mean it never will. Like Shelley says, neutropenia in Barth boys can rear it’s ugly head at any moment, and the best thing we can do is be prepared.

One thing that we were expecting to happen was for Wally to start weekly blood draws to obtain a pattern of his neutrophil count. But Dr T does not think at this time that we need to check Wally’s blood every week. He says he does not want to put Wally through that. In the near future that may be something we do. Instead, he would like to gather data by us observing his symptoms, keeping a journal, and getting Wally’s blood drawn when he seems “off”. If Wally were to spike a fever of 100.4 or over we are to call Dr. T and most likely to the hospital we go. The goal is obtain blood cultures and a complete blood count when this happens to make sure Wally has the neutrophils to fight off whatever infection he has acquired. If there were ever a time where his neutrophils were too low, or Dr. T thought it was necessary we would be admitted to the hospital for further work up and possibly preventative antibiotics.

What really surprised us about Dr. T is his willingness to want to learn  more. And the research he wants to conduct. Something that I found interesting and had never thought of until the conversation with him, is the immune system as a whole for a child like Wally. A lot of the literature and research that has been done is about the neutrophils. Dr. T is interested in digging deeper in to the immune system of a Barth child. Wally finally got caught up on all his vaccines the day of his appointment with Dr. T and because the timing worked out so well, he would like to in six to eight weeks check Wally’s blood to see how is immune system has responded to the vaccines. If his body has not taken to the vaccines, not sure where we go from there but an infectious disease specialist may be consulted.

The scare of not having the appropriate amount of neutrophils to fight off infection is that…. if you get a virus and your white blood cells do not have the appropriate troops to fight off that virus… Eventually that virus or infection will travel into your blood stream, where you become septic. And sepsis is very, very, bad. Especially for a child. Especially for a child like our Wally. I will not get on the vaccine debate in this post and this may be a little off topic but I need to say it. Vaccinate your children!!! And another thing, please, I do not care if you want to hold Wally, but if you have been sick or are sick STAY away. Far away! This may be common sense, but I’ll say it anyway. You MUST wash your hands or use hand sanitizer before touching or holding Mr. Wally J PERIOD! I hate to be “that mom” but with Flu season coming up (I am literally terrified) AJ and I will be enforcing this as hard as we can! Our goal is to keep Wally out of the hospital. I think some people do not understand how important this is. Germs live everywhere. Germs spread easily. So please, do not take offense if we ask you to wash your hands, or if you have been sick. It is only to make sure we are keeping Wally safe and as healthy as possible.

Overall we are very enthusiastic about how the appointment with the hematologist went. I also cannot say it enough, Wally’s actual care team, and all his physicians that are on his case, are truly the best. We could not be anymore grateful for the people we have looking after Wally. Dr. Tarantino is just another amazing physician to add to our already amazing list of care providers. We are off to the GI specialist tomorrow! I am really nervous about this appointment because of all of Wally’s GI issues, we just need answers. Our lives may be crazy, our calendars booked, BUT we are truly blessed with the little boy that is Wally J!

Love you all!

Wally’s Momma 💕💕💕

Losing Friends

I want to talk about something that I think a lot of people can relate too. I for one have struggled with this for a couple of years now, but more so in the past couple of months. It is the topic of losing people in your life that you thought would always be by your side.

I am the type of person that makes friends very easily. Maybe its my outgoing personality or my never ending persistence. Who knows 🙂 But I have had a lot of different friends over the years. Some really good friends, some not so good friends. Friends that have stuck around and friends that have disappeared. What really has upset me here lately is the people who I thought would stick around, the people who have traveled the path of losing Henry with me, the people who in a million years I would never think would disappear, have in fact disappeared. And I start to wonder… Why?

Listen, I know my life isn’t easy. I have a medically fragile child, I am a full time working momma, a wife, daughter, you get the point. Most days I don’t have time to shower let alone go out and have a cup of coffee with a friend. I realize my life is messy and chaotic and maybe for some people it’s just too much. Too much effort to try and make plans. Too much effort to reach out and see how we are doing. But… It doesn’t mean it hurts any less. It actually hurts a whole lot. It’s like a bee sting that doesn’t stop stinging. And the one thing that I wish my so called friends would realize is that…. I know a lot of things have changed. I have changed. But I am in a way still the same Kelsey. The Kelsey who likes to laugh and eat good food. Who could talk about literally anything and everything. Who would still be your shoulder to lean on. Who would still come running if you needed me too.

Living this life… this complicated, exhausting, but beautiful life can be so lonely. Especially when your child is fragile. There are days where the only person I talk to is Wally. There are days where I feel so closed in and so depressed that I think “Today is the day where I go crazy.” And I look around, and the only people I see are Wally, Zeus, and AJ. Don’t get me wrong we have amazing families, we have our Barth family <3, some friends that live in town, and I have a friend Stacey who I vent to through texting. But sometimes what I really need is… someone to distract me from my crazy life. To be ok with coming over, sitting on my couch, gossiping, talking, and just hanging out. What people need to realize.. I don’t want my whole world to revolve around Wally. Not all conversations have to be about Barth’s, or how he is doing. Actually I would love to talk about SOMETHING else. I think every mom can relate that when you become a mom, you kind of lose yourself. And I have most definitely lost myself along with some of my best friends. And it stinks! And its confusing and sad.

But… if there’s one thing I learned is that… people come in to your life for a reason. So maybe the people who have decided to leave were only meant to be around for that portion of our lives. Maybe they were sent to me, to help me get through losing Henry. I will never know. And trust me I know it takes two to have a friendship. I am not a saint. There are things I could have differently. I could have texted more, called more, been my old persistence self. I let my pride and my hurt feelings of them not reaching out dictate my actions and that wasn’t fair. So…even though I know I could have been a better friend myself, I have come to terms with accepting the fact that they just do not want to be a part of our lives anymore. And that’s ok. It truly is ok because we have the most amazing support system of people who love us and love Wally. We have people who don’t get offended when a call or text message isn’t answered and forgotten about (eventually I do remember ;))We have people that despite our sweet, complicated, Wally, and our crazy, chaotic life, still want to be in our lives. These are the people who I want to surround myself with. The people who (I hope) will be around for the long haul. Because as much as I need a friend, I want to be that friend for someone else.

So for all you out there that know exactly where I am coming from. That know the sting you feel from realizing someone doesn’t want to be a part of your life anymore, please know this…. people come and go. It is just the way of life. Seasons change. Circumstances change. The world keeps turning. Does it suck? Hell yeah it sucks. BUT…It is ok if someone walks away from the friendship you have thought you created. It just means they were not meant to follow you in the next chapter of your story. And here is a little secret that I recently learned and witnessed. That next chapter, the chapter in your story, is full of new friendships and new beginnings. And let me tell you friend, that hope, is enough to dull the hurt and the sting you feel now.

So I am saying goodbye to these past friendships and saying hello to new friendships. Life is crazy beautiful and filled with twists and turns. As long as I have my faith and hope in tomorrow, I know that everything will turn out exactly how God intended it too.

So here is to the next chapter of my story and the beautiful friendships it creates! ❤ ❤

Love you all,

Wally’s Momma ❤

We all lose friends.. we lose them in death, to distance and over time. But even though they may be lost, hope is not.”





Fighting for my child

There’s nothing worse than a sick child. For a child with Barth syndrome the smallest cold can send them down a dangerous path. There’s also nothing worse than a doctor or doctors who do not listen to you and look at you and treat you like you are crazy.

Wally has once again landed himself back in the hospital. He’s had cold like symptoms for over a week and started running a high fever Thursday night. We were worried to the point we took him to the ED on Sunday night to be sent home. On Tuesday we realized enough was enough and demanded to be admitted. Luckily we have a pediatrician who listens and agreed that he did not look well.

Barth boys can be tricky and hard to figure out. One thing is for certain is that they can become neutropenic and have a hard time fighting off infection. When this happens you worry about things such as sepsis and death. Well of course this was our concern with Wally. We wanted four things to happen. We wanted to be admitted. We wanted to figure out why Wally had a high fever for going on 7 days. We wanted to make sure he wasn’t neutropenic and that he was able to fight this current infection appropriately. And we wanted an inpatient hospital consult with a hematologist. Luckily our pediatrician actually listens to me and agreed right away. So off to the hospital we went.

We have yet to find out if Wally has cyclic neutropenia. We have been waiting for an appointment with a hematologist forever. Luckily we are fortunate to have such an amazing support system including our families and our Barth family! Shelley, who I mention a lot, one of the founders of the Barth Foundation, and a barth momma has the most amazing connections! Including neutropenia specialist AudreyAnna, who helped us receive a referral to one of the best hematologist in our area. All the hospital doctors had to do was page and call this amazing hematologist, Dr. Tarantino. Dr. T knew about us from AudreyAnna and agreed to take us on. But in order for him to get involved the hospitalist had to make the call. Well that didn’t happen. And it was a long frustrating two days trying to explain over and over again what exactly it was that we wanted.

They found out Wally has a double ear infection and a bad upper respiratory infection. They did blood work and although his neutropenia levels were low they were in acceptable range. The doctors than proceeded to tell us that because his neutropenia levels were “fine” they didn’t see the need for a inpatient consult with a hematologist. I knew that there was nothing intervention wise that there could be done because at the time Wally wasn’t neutropenic thank the lord. BUT we wanted an inpatient consult to establish with Dr. T because that way we could schedule a follow up quicker to get started on weekly lab draws to determine if Wally’s neutrophil counts cycle. The doctors were not understanding what I was saying. One doctor even went as far to say, “Well his neutrophils are normal so we now know he won’t ever have a problem with being neutropenic”. 🙄🙄. I tried to explain that with Barth syndrome the boys can cycle, they can be intermittent, and when they do become neutropenic they go down hill fast. They shrugged me off. They even smirked. I think some of them thought I was crazy and some of them thought I was looking for trouble. But here’s the thing. Our sweet Wally has been sick five times in six months! FIVE! Luckily he fought the infections like a champ, but this is not ok. Sooner or later he’s going to get an infection and the outcomes are not going to be so great.

Fortunately I have a dear friend, Cassie, who works for Dr. T and who I was in contact with. She said she talked to Dr. T and he was more than happy to come see Wally in the hospital knowing it wasn’t an emergency etc. But the doctors had to make the call for him to be able to step in. Well these doctors were just not hearing what I was trying to say. And that didn’t happen. There is nothing more frustrating than trying to do what’s best for your child and not getting the support from medical staff that you need.

When you don’t have that support you start to question yourself as a mother. Am I crazy? Am I looking too much in to this? And these doubts eat away at you. You really start to believe that you are crazy. Since Wally has been born he’s had a rough go. He still has so many issues that we do not have the answers for. That we are fighting like hell to figure out. We have had amazing experiences with medical staff and the physicians that have seen Wally. Until this hospital stay. Luckily everything worked out due to my connections but what if it hadn’t? I know there are a lot of families with medically fragile and sick children who go through the same thing. Having a medically fragile and sick child… it’s exhausting. And than having to explain yourself over and over. And fight for your child and what he/she needs over and over. It’s not fair to the child or to the parents.

Barth Syndrome is complicated. Wally is complicated. His medical history is complicated. I know and understand a lot of people, especially doctors, do not know about Barth Syndrome and what it can entail. But when it comes to something one doesn’t understand or know you research it and you listen to the concerns of the parents or guardians. No one knows a child better than their parents.

Wally didn’t choose this life. We didn’t choose this life for him. All we want is for Wally to be happy, healthy, and to lead a normal life. So when it comes to his health I will do everything in my power to be his voice. I will continue to fight and go to hell and back to make sure he is getting the care he needs and deserves. And anyone who wants to stand in my way… well be ready to put up a fight.

Thank you all for the continued prayers and love. AJ, Wally, and I are eternally grateful.

Wally’s mom 💕💕

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.”