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Jo-Jo's Journey, Centerburg, OH (2025)

03/19/2024

Over the past 6 months, we have had appointments, tests and reconstructive surgery. We have trialed a new formula. We have restarted specialized speech therapy.
We haven't made much headway.

He is doing great in speech. That is super positive. People are actually beginning to understand him when he speaks. I am so thankful that the reconstructive surgery seems to be working.

However, nothing else is. We failed the trial run of the new formula. I have lost count of the number of formulas we have tried. I believe we are now out of options. So now, we have to figure out how to make little man gain some weight. 37 pounds at 6 1/2 years old and gaining very little. (To put that into perspective, he is barely on the growth chart at a whopping 2nd percentile)

We did bloodwork and lots of finger sticks for about a month. They thought they had found an explanation for the constant GI issues. The tests led us nowhere.

We are going to take a break for awhile from the appointments that are "unnecessary ". I am tired. He is done being poked and prodded. I just want to let him be a 6 year old for as long as I can manage and defer.

He will start baseball soon. He LOVES his special baseball team! I am so thankful he has that opportunity for some sort of normalcy.❤️

01/17/2024

They say kids are resilient...this boy had proven that time and time again.

Little man had reconstructive surgery on his throat and is doing much better than we expected. We are still dealing with lots of sleep apnea and snoring, but during the day he is his normal, crazy little 6 year old self😜. He had his follow up appointment and we were told the healing process takes 6 months to a year. It will take time for all the swelling to go down and for his brain to learn how his 'new throat' works. Then he will begin special speech therapy to learn how to talk with his new throat.

We then visited an endocrinologist for the first time. Joe is having so many issues with his GI system and it all points to him possibly having yet another syndrome. The specialist looked through his records and informed me that he has had many, many episodes of low blood sugar. I knew of a few episodes. But not as many as she pointed out. So now we have a new concern and have to test him 1-3 times a day.

Today was the first day as we had to wait for insurance approval and for supplies to be ordered. Joe saw the supplies and had a very aggressive meltdown. Home has been his safe space. We have not had to do anything with needles at home so he felt safe. Now we have to do 'ouchies' at home and he is angry....understandably so. I'm just hoping it is short lived. That maybe he won't have any episodes of low blood sugar over the next few weeks and we will be able to stop testing.

2 of his specialists are discussing a week long hospital admission to do some testing. That doesn't sound like much fun, but if it's what they need to do in order to determine how best to help him, then that's what we will do.

This boy. I don't know when things will stop. When the diagnosies will stop. But he continues to smile. He continues to be a happy and oh so loving little guy. He is the best❤️

12/29/2023

I have been quiet for awhile. We are dealing with some big stuff. Little man is having several procedures next week including a Cardiac MRI to check the deterioration of his heart and reconstructive surgery on his throat. I am petrified. The risks/complications are huge and overwhelming. Just praying that he shows his true colors yet again, and is a brave little superheroe who overcomes the odds stacked against him.

Today, We had our 3rd appointment in 6 weeks with a specialist who is trying to determine why Joe is so sick. We were referred to yet another speciality because they are 99% sure that J will be diagnosed with a new syndrome. Another syndrome with increased morbidity and mortality. Joe has so many of the symptoms and has had them for years...why was this missed??? There are medications and treatments that could have been used to alleviate some of his issues. It's so frustrating.

I can't sit and dwell. I need to pull up my bootstraps and move on. If I think about the meaning of everything right now, I would just melt into a puddle on the floor. He needs and deserves a strong mama who fights for him and doesn't give up.

I may shed a tear or 2 on the drive home, but then will wipe my face, straighten my shoulders and get on with my day. He never gives up so why should I???

Keep fighting little man.
We love you so!! ❤️🩵💜💛💚

11/29/2023

J man had his yearly vision check last week. On top of everything else, his vision is now going. Good thing he looks adorable in glasses.😎

I wish I had the strength to smile through the pain like he does. We are dealing with our first episode of aspiration pneumonia. He is so congested, coughing non stop and now fevered. His pulmonologist called in an antibiotic which we will start tonight in the hopes that we can keep him out of the hospital. 💔

11/03/2023

Where to even start...I am physically, mentally and emotionally exhausted. Joe has had many appointments over the past month with more coming- including major surgery- before Christmas.

Last week, Joe was complaining of pain to the point of him struggling to walk, lay down or cough without crying. Joe does not complain, so his crying and saying "ow" everytime he moved or coughed, raised concern. I messaged the doctor who agreed that an assessment was needed. I left work and drove him all the way to the hospital where my concerns were dismissed and we were sent home. No testing at all.

To say I was angry and frustrated would be an understatement. For 2 days after, Joe walked funny and said he hurt. There was not much we could do.

Fast forward to today- we saw yet another new specialist. Joe has not been seen by a GI doctor for quite some time. I will spare you the details as to why he hasn't...suffice it to say- we had hit a brick wall with the previous specialist.

Anyhow, I told this doctor the events of last week and he agreed that my suspicions of what was causing Joe's pain, could have been correct, but can't be confirmed without ultrasound- which should have been done when he was in pain. It is incredibly frustrating when doctors don't listen to parents. 😥

This doctor looked at me like I had horns growing out of my head when I said I was frustrated with how sick Joe is and that we feel we are not gaining any ground. Like Joe isn't sick??Joe isn't sick, but he projectile vomited all over the kitchen when we got home. Joe is not sick, but this doctor wants to see him in clinic every 6-8 weeks??

This doctor wants to make some drastic changes in Joe's routine. Changes that we have tried before and they have failed. This doctor- like the last 4 we have recently seen- stated that Joe's genetic anomaly is so rare that there is no research to study. We have no idea if his GI issues are related to this anomaly.

It's a lot of info that I don't really want to go into on this page- I just feel like my head is spinning and we are starting at ground zero with his care.

I'm so thankful that Joe is able to roll with the punches. Even tonight, as he finished heaving, he looked up and said, " I'm OK. I just need a tissue" and went back to playing his game. 💔
Oh to have his resilience.

10/19/2023

We had a big appointment yesterday, so I decided it was time to bite the bullet and "clean up" his medical folder....it might be time to upgrade!

As of now, this folder only has his list of diagnosies, currents medications, IEP/ETR, and the most recent after visit summary from each specialist. We are missing 3 specialist and no therapies are included. Time to go heavy duty! If you ever wonder why my son "looks so normal" but I'm telling you he's very sick....just look at his folder😥

His appointment went well. It was the MDA clinic, so almost all care was covered. Lots of updates, new testing was suggested - which we have declined for the time being. The good news was they did not find any new muscular degeneration!! His hands are still a concern, but we will just keep working with OT.

The doctors were amazed at his level of intelligence for his age 😊 He cooperated well and kept them laughing at his antics😂😂
For the first time in a long time, we had a good appointment❤️❤️

09/26/2023

Here we are again. Desperately trying to get our heads above water as we have been dealt another blow.
I had a consult today for what was supposed to be Joe's next surgery. We have been waiting for this one for over 4 years. He was finally in a place where they felt that he could have the surgery. They felt like they had a grasp on the situation and were ready to move forward.
However, when they did the pre op tests, Joe's condition was discovered to be much more severe than they originally thought. The surgeon explained that, based on his condition, the procedure and Joe's history, the risk may outweigh the benefit.
So now we have a conundrum...
Do we take the risk and hope for the best?
Or do we remain status quo for the safety and well being of our boy?
I just feel like we cannot get ahead. We have been referred to 3 more specialists in the past week bringing the total to 22!!
Joe continues to be the strongest little human being I have ever met, even when he is suffering. He gets sick, gets up, looks at me and says, 'I'm ok!'
We would appreciate all the prayers as we navigate this decision trying to keep our boys quality of life at the forefront. He really is a super hero!!❤️💙🖤

08/29/2023

When they knock you down, you get back up. When they knock you down again, you come up swinging.

It's been a rough week and I'm feeling down. Maybe writing things down will help? Bear with me, my intent is not to complain or be negative. But when you deal with heavy things like this on a daily basis, there needs to be an outlet.

Joe had an appointment last week that gave us answers we have been waiting 4 years to hear. They definitively diagnosed him with cleft of the mouth. We are scheduled for testing to determine the exact location and to decide which surgery he will require. The specialist informed me that they expect the deficit that needs repair to be the size of a golfball....I was not expecting that. We have known since he was just a little guy that something was wrong because he cannot make certain letter sounds without significant help. But to be told that the repair will be that extensive...that was hard to hear.

The harder part, is hearing that this/these surgeries will only help with his speech. It will do nothing for his feeding difficulties. I guess I had that little glimmer of hope that we would be able to 'kill 2 birds with 1 stone'. Those hopes were dashed then and again today when the ENT confirmed that there is still nothing that can be done for feeding issues. The bigger issue is that it is becoming increasingly more important to keep him NPO to prevent aspiration pneumonia. His lungs are just too weak.

He has been struggling with some concerning symptoms over the past week, that could be an indication of a decline. He fatigues easily, has been vomiting large amounts and has been complaining of joint pain and chest pain. Joe generally does not complain, so to hear him complain of aches and pains is very disconcerting. When I messaged the doctor with my concerns, I was still hoping that I had over-exaggerated the situation. The nurse called back and stated, ' when I asked the doctor what her thoughts were on your concerns, she stated the Joe is a very complex guy and needs to be seen asap." Knowing that in my head and hearing that from a medical specialist- very different scenarios. So, all of this is requiring a visit to the cardiologist earlier than previously scheduled

He is supposed to start school next week. He desperately needs to be in school for the structure and peer interaction. But now, my mama's heart is concerned that he will not be able to maintain with all of these new symptoms and the germs he will be subjected to again.

Mamas- hug your babies tight. Be thankful for their health. Dare I say, be thankful their immune system can handle the common cold.
Some of us have babies who are not that fortunate.

07/30/2023

Sometimes I really struggle with how much to share about his journey. I didn't even want to create this page but others asked for it as a way to follow him. So here is the latest...

The month of July has definitely been a challenge for us. We started off the month with more labs which showed his counts had dropped dangerously low. He had a treatment and we are still waiting to see if this helped to elevate his counts at all. It would not seem so as he has struggled the entire month with belly issues among other things.

We then had a follow up for his lungs where we were told that he is not far from needing assistance by machine. His lungs continue to weaken causing fatigue. This became very apparent when we took him to a park and he was unable to keep up with other children his age. As hard as he tried, he couldn't do what they did and his muscles showed their fatigue by shaking and giving out. This was heartbreaking to watch. He felt inferior and did not understand why he could not do what they were doing. My mommy heart was shattered.

We have multiple appointments with some of his top specialists in the month of August. We are hopeful they will have some insight. We should know if he is ready for his next surgery. They may be able to determine if his genetic condition has progressed given the recent changes in his muscles. We hope to then take those answers and advocate for his education.

Your continued support is so vital. We appreciate all of you more than you know.
We will be walking for support in September. If you want to donate to the cause, please let me know and I can send the link. Thanks so much❤️

04/26/2023

Yesterday, the doctor called to confirm my fears from the results of J's last set of labs. It has taken me 24 hours to come to terms with it. I still had a small inkling of hope deep down.

The doctor stated that the lab work continues to be very low, which I knew from the results that were sent to me last week. The doctor also stated that because his counts have stayed in the same range for 2 years, that this will likely be his "normal". J will struggle with his immune system for the rest of his life.

Yes, there are treatments that could be given to boost his system. But they feel his body would just flush it out and it would be tens of thousands of dollars wasted with each treatment.

What does this mean for our boy?? Right now I just don't know. The doctor advised me to be on high alert for any infections. We will continue to monitor his attendance to large heavily crowded venues. I just don't know what else we can do.

I'm so thankful that this doesn't seem to affect him, he is still the happiest little guy. We will just continue to live each day as it comes.
🩵💙💚❤️

Jo-Jo's Journey

03/19/2024

01/17/2024

12/29/2023

11/29/2023

11/03/2023

10/19/2023

09/26/2023

08/29/2023

07/30/2023

04/26/2023

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