Urgent Prayers for 4-Month-Old Baby

CelticGrace

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MRI ✅ NAILED IT!!!

We ended up not doing IV sedation or a breathing tube with Finn. We also opted out for the contrast. With an MRI, the entire goal is to just hold perfectly still and our team felt that if he cold hold perfectly still with just gas, we would go with that.

Contrast opens another can of worms so we also felt that if we got the images we needed without it, we would not do the contrast. The radiology department was indeed able to get what they needed without contrast!

Anesthesia still had to run an IV for safety which they got in Finn's right foot but we never needed it!

Gas is not invasive so Finn woke up very quickly and was back to his normal self shortly after! There is also no need to stay and be monitored with gas so we are headed home!!!!

I am grateful for this team as they put so much thought into getting what they needed but not putting him through anything more than he needs to go through. He has already been through so much and will need to be sedated more times. It just wasn't necessary to do.

I should get a call with the results by mid next week. Thank you for swimming beside us today!
 
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Results from MRI are in:
Finn's MRI results are in. UVA called me first thing this morning. They did not come back normal.

Finn has a condition called Heterotopia.

What does this mean? What it technically means is that the gray matter of his brain is in the wrong place. There are several places in your brain where you have gray matter and his isn't misplaced in just one spot, it's spread about in several regions.

What caused this? Finn already has a condition called Heterotaxy; something he was born with which causes things to be in the wrong places or not formed correctly. We have seen this in his heart, his bowels, his stomach and intestines, his thoracic duct and now, his brain. He has had the Heterotopia his entire life, we just didn't know it until now. It's not something that gets worse or gets better. What he had when he was born is what he still has now.

Is it bad? It's not good but there are many other neurological things that he could have had that are indeed far worse. Heterotopia is NOT fatal BUT, it does cause seizures, epilepsy and major developmental delays which he is already at risk for because of his heart condition and the complications given from being in the hospital so long and having so many procedures.

What do we do now? Unfortunately, there is nothing we can do. But, knowledge is power and knowing he has this condition will help us in the path of his care for future procedures and future medications. We cannot treat him with seizure medicine YET. The medicine he would need to be on causes all sorts of issues like lack of appetite, moodiness, tiredness and we don't want to add those variables unless his non responsive seizures become worse or more often. There is also no repeat MRI needed because this is what it is and it won't get worse or better so the MRI will always show the same. This is all going to depend on him and how he handles this condition.

Concerns? Yes. If Finn didn't have any further procedures to endure, it would be a relief, BUT he has several more on the list and soon. He still has his full reconstruction of his heart to happen as well. These ARE concerns in combination with the Heterotopia because he is very at risk for seizures and epilepsy. There is only so much your body can take. THANK YOU, THANK YOU to UVA for not sedating him other than gas last Friday. THANK YOU. The more he is under the more at risk he becomes.

Plans for the future now that we know this? Only see neurology if he has more seizures or has them more often. Following up with developmental pediatrics is going to be KEY. The second we feel he is getting behind on anything, we need to research and give him extra attention so we don't miss anything. PT, OT and speech will be instrumental in keeping him on track with his milestones.

Basically, this is a true miracle. Heart condition alone, long hospital stay alone or Heterotopia alone would be a miracle that Finn is making his milestones. But having ALL of the challenges he has? It's unexplainable.

It hurts my heart to know he has another condition. It hurts a LOT. I look at him and all he has accomplished and think 'How are you doing this?' I worry 'How much time do I have before all of this catches up with him? How much can he take?' But those worries are about the future and I can't let those emotions ruin what is happening in front of me today. Finn has no idea that he has all of this going on. To him, ignorance is bliss. He is happy, thriving and in this moment, that is all that matters.

As much as he fights, I will continue to fight along with him, right by his side. I will continue to give him every opportunity to experience everything in life that he can like aquarium visits, park visits, school visits, throwing Cheerios all over the floor and rolling in them. Every laugh, every smile brings him closer and closer to proving medicine wrong but most importantly, living a wonderful and close to 'normal' life. And what is 'normal' anyways? I think it's just doing the best that we can and trying to enjoy the ride as much as possible.

I always used to say that I wish a hug or a smile could cure everything. I think that Finn has proven that it can. I have seen miracles happen when he is surround with joy, smiles, hugs, high fives and laughter. It does. It does cure all. No matter what is put on paper, he still proves that nothing can stop him and I 100% believe that this has been his best medicine. He LOVES his life. No matter how many procedures he has or doctors visits he has, he keeps pushing and keeps smiling.
Finn's MRI results are in. UVA called me first thing this morning. They did not come back normal.

Finn has a condition called Heterotopia.

What does this mean? What it technically means is that the gray matter of his brain is in the wrong place. There are several places in your brain where you have gray matter and his isn't misplaced in just one spot, it's spread about in several regions.

What caused this? Finn already has a condition called Heterotaxy; something he was born with which causes things to be in the wrong places or not formed correctly. We have seen this in his heart, his bowels, his stomach and intestines, his thoracic duct and now, his brain. He has had the Heterotopia his entire life, we just didn't know it until now. It's not something that gets worse or gets better. What he had when he was born is what he still has now.

Is it bad? It's not good but there are many other neurological things that he could have had that are indeed far worse. Heterotopia is NOT fatal BUT, it does cause seizures, epilepsy and major developmental delays which he is already at risk for because of his heart condition and the complications given from being in the hospital so long and having so many procedures.

What do we do now? Unfortunately, there is nothing we can do. But, knowledge is power and knowing he has this condition will help us in the path of his care for future procedures and future medications. We cannot treat him with seizure medicine YET. The medicine he would need to be on causes all sorts of issues like lack of appetite, moodiness, tiredness and we don't want to add those variables unless his non responsive seizures become worse or more often. There is also no repeat MRI needed because this is what it is and it won't get worse or better so the MRI will always show the same. This is all going to depend on him and how he handles this condition.

Concerns? Yes. If Finn didn't have any further procedures to endure, it would be a relief, BUT he has several more on the list and soon. He still has his full reconstruction of his heart to happen as well. These ARE concerns in combination with the Heterotopia because he is very at risk for seizures and epilepsy. There is only so much your body can take. THANK YOU, THANK YOU to UVA for not sedating him other than gas last Friday. THANK YOU. The more he is under the more at risk he becomes.

Plans for the future now that we know this? Only see neurology if he has more seizures or has them more often. Following up with developmental pediatrics is going to be KEY. The second we feel he is getting behind on anything, we need to research and give him extra attention so we don't miss anything. PT, OT and speech will be instrumental in keeping him on track with his milestones.

Basically, this is a true miracle. Heart condition alone, long hospital stay alone or Heterotopia alone would be a miracle that Finn is making his milestones. But having ALL of the challenges he has? It's unexplainable.

It hurts my heart to know he has another condition. It hurts a LOT. I look at him and all he has accomplished and think 'How are you doing this?' I worry 'How much time do I have before all of this catches up with him? How much can he take?' But those worries are about the future and I can't let those emotions ruin what is happening in front of me today. Finn has no idea that he has all of this going on. To him, ignorance is bliss. He is happy, thriving and in this moment, that is all that matters.

As much as he fights, I will continue to fight along with him, right by his side. I will continue to give him every opportunity to experience everything in life that he can like aquarium visits, park visits, school visits, throwing Cheerios all over the floor and rolling in them. Every laugh, every smile brings him closer and closer to proving medicine wrong but most importantly, living a wonderful and close to 'normal' life. And what is 'normal' anyways? I think it's just doing the best that we can and trying to enjoy the ride as much as possible.

I always used to say that I wish a hug or a smile could cure everything. I think that Finn has proven that it can. I have seen miracles happen when he is surround with joy, smiles, hugs, high fives and laughter. It does. It does cure all. No matter what is put on paper, he still proves that nothing can stop him and I 100% believe that this has been his best medicine. He LOVES his life. No matter how many procedures he has or doctors visits he has, he keeps pushing and keeps smiling.
 
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CelticGrace

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This kid gets everything... honestly. Finn's been feeling sluggish and snuggly and just not himself the last couple of days. A couple of people speculated maybe he was getting more teeth in, but no. Kelly finally took him to the pediatrician today and... He's got hand foot and mouth disease. Poor kid :(
 
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please say a prayer for the family of one if Finn's friends from UVA. 3-year-old Brady had leukemia and was around for a lot of (possibly all of) Finn's hospital stay last summer.
Brady gained his angel wings this morning.
 
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brinny

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please say a prayer for the family of one if Finn's friends from UVA. 3-year-old Brady had leukemia and was around for a lot of (possibly all of) Finn's hospital stay last summer.
Brady gained his angel wings this morning.

:heart: I'm soooooo sorry. Praying for Brady's family and Finn, and all who loved him, and you too (((hug)))
 
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Yesterday was the memorial service for Brady.

On a happier note, another of the kids at UVA, a little boy named Kyrie, received a new heart yesterday! He'd been on the waiting list for three months. Praying for healing for him, as well as peace and comfort for the family of the child whose heart Kyrie received.

Finn seems to be doing well, I think at least the worst of the hand foot and mouth is gone, if not completely. He had appointments at UVA a couple of days ago to check his heart, and nothing's changed, which is good. Now they'll begin thinking about the next stage in a few months, and also he'll need a heart MRI at some point, which will not be the "easy" one like he had with the brain MRI with just gas; he'll have to be fully sedated, etc. which will mean hospital stay most likely. No idea when that will happen though.
For now, they're still just working on his physical therapy and they hope to get him walking by the end of the summer!
 
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brinny

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On a happier note, another of the kids at UVA, a little boy named Kyrie, received a new heart yesterday! He'd been on the waiting list for three months. Praying for healing for him, as well as peace and comfort for the family of the child whose heart Kyrie received.

Finn seems to be doing well, I think at least the worst of the hand foot and mouth is gone, if not completely. He had appointments at UVA a couple of days ago to check his heart, and nothing's changed, which is good. Now they'll begin thinking about the next stage in a few months, and also he'll need a heart MRI at some point, which will not be the "easy" one like he had with the brain MRI with just gas; he'll have to be fully sedated, etc. which will mean hospital stay most likely. No idea when that will happen though.
For now, they're still just working on his physical therapy and they hope to get him walking by the end of the summer!

:heart: Praying for Kyrie and his family and the family of the child whose heart Kyrie received.

Continuing to pray for Finn and the challenges ahead, and that he's walking by the end of the summer (((hug)))
 
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Yesterday was the memorial service for Brady.

On a happier note, another of the kids at UVA, a little boy named Kyrie, received a new heart yesterday! He'd been on the waiting list for three months. Praying for healing for him, as well as peace and comfort for the family of the child whose heart Kyrie received.

Finn seems to be doing well, I think at least the worst of the hand foot and mouth is gone, if not completely. He had appointments at UVA a couple of days ago to check his heart, and nothing's changed, which is good. Now they'll begin thinking about the next stage in a few months, and also he'll need a heart MRI at some point, which will not be the "easy" one like he had with the brain MRI with just gas; he'll have to be fully sedated, etc. which will mean hospital stay most likely. No idea when that will happen though.
For now, they're still just working on his physical therapy and they hope to get him walking by the end of the summer!
Praying for Brady's family in their loss!

Praying also for Kyrie, his family, and the donation child's family.

Praise God for Finn' healing and progress; continued prayers going forward for all his needs.

May God be merciful to all these souls :crossrc:
 
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Nothing new to report. I just wanted to show y'all the difference a year makes... this is a side-by-side of Kelly & Finn just before Shark Week last year, when he was the sickest he'd ever been, and now, taken last week at a waterpark:

Finn then and now.jpg
 
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