So its no secret that some of you know that Levi was born with a good portion of his lower body covered in a rash like birthmark called: Port Wine Stain.
Yea, don't worry, I didn't know what it was either.
I remember thinking when he came out, "Wow, this kid has some serious birthmarks!"...by the time we made it to the mother/baby unit we were the talk of the hall and the nurse was telling us the pedatrition would be calling us and a Genetic doctor would be coming to see us soon.
*Huh?*
*Huh?*
Of course, it didn't take me much time to pull out my smart phone and start conversing with Dr Google. Actually, Wes was guilty too. Only because we had no clue what it was, or what it meant. Was he healthy? Was this going away? It was just a birthmark right?
The genetic doctor came and met with us for a good hour or so, handed us a stack of medical articles on port wine stain explaining how other medical conditions could be attached to 'his condition' and that we would need to see a specialist to further asses him. She told us how lucky we were that there was none on his face or head because there were some serious life threating things attached to port wine stain on the head and neck BUT that in Levi's case, she hadn't seen that much port wine stain on the lower portion of a baby in a long time. Because of that, they would need to run some additional tests on Levi in the hospital. But Levi was altogether healthy and all his tests checked out 100% normal so there was nothing to worry about. At least right now.
And that began our journey into a world of wondering what the heck port wine stain was, why he had so much of it, and learning about this rare genetic happening that has no explanation other than a DNA coding 'blip' if you will, that sometimes happens in the first trimester of pregnancy. No cause. Hereditary? no. Genetic? yes. Honestly, just a blip in one strain of DNA.
Yes, he is THAT special.
Because of him being 'that' special, there are not many doctors familiar with the staining or the various things that 'could be' attached to so much of it. Therefore, as a serial googler, I have found my 'research' (if you will), to be frustrating. In other words, there just isn't much information on it other than fancy medical studies and journals which, lets face it, are just plain boring and confusing to read.
With that said, what I have found has at least been accurate information and with my little limited college biology background classes, I have had at least a vague understanding of enough of medical jargon to 'get my by' to be able to formulate and ask responsible and reasonable questions.
So here is the low down. At 2.5 months when we met with the specialist for the first time at Duke, we were told basically what we already knew: he had port wine stain; we were lucky it wasn't on his head and neck; there can be 'other physical things and syndromes' attached to as much of it as he has; and we just needed to take the wait and see approach to Levi.
We learned a few other things like: he will always struggle with eczema and dry skin; his port wine stain is like those mood rings, meaning that it changes color with his 'temps' or moods. Purple means he is cold, Red means he is hot, and when he is 'just fine' it fades a bit. Kind of cool. Really cool in fact. How many other people can brag about their mood ring kid?
Also, because of the numerous amounts of capillaries and such that are so close to the skin he can be quicker to get frost bite so we need to be sure to be very careful with him in the cold weather. Always keep hands and feet covered and him out of the cold.
We were sent home from that appointment with a few things to watch for but that she was certain that with the type of port wine stain he had, she didn't think he would ever have any more 'complications' other than it just being a vascular birthmark. She told us that IF anything presented itself it would probably be once he started walking.
Well, ok. However, as a mama, you tend to tuck a lot of the 'what if' information in the back of your head and secretly wonder things....all the time. I have always been watching.
Levi started crawling or attempting to not stay in one place from about the age of 4 months. That was when I started noticing the most that one hand looked larger than the other but I thought maybe I was just mistaking chubby baby hands for swollen and it was all in my head. But honestly there were some days and nights I would stare at his hand, and his little pointer finger in particular and think, "That just doesn't look normal". No one else seemed to 'notice' so apart from the random comments I would make to Wes from time to time, I just let it go.
At Levi's 6 month doctors apt though I just couldn't hardly stand it anymore and asked the pediatrician if it looked normal to him. Upon me pointing it out he very clearly said, "Yes, it is larger than the other hand. I think we should do an x-ray". (abnormal bone growth is one of the things you look for with the KTS syndrome) So we did. Results came back that it was 'just vascular' and we would reevaluate at his 9 month apt. Good news....right?
As the colder weather has set in, I have noticed the swelling more and more. Sometimes his pointer finger curls under as he crawls. Sometimes I have noticed him much fussier than normal. But he is a 8 month old baby and teething and growing and changing....so I let it go.
I had him back to the doctor a few weeks ago to check his ears for an ear infection. The doctor examining him noticed his hand right away and started asking a zillion questions and really examining the 'swollen' chubby hand. Yes, yes, it was swollen. *guess my eyes weren't playing tricks on me*. But again, its a weird physical anomaly we are dealing with here so even the doctors here aren't real 'schooled' in the 'what nexts' and don't offer me much other than, "give some Motrin for the inflammation".
As I was venting to Wes that evening about everyone now noticing Levi's hand but no one offering me what I should do about it, because it now stays in a constant state of swollen, he very calmly told me to call down to Duke and talk to them. We were established and she said if I ever had any questions I could call them. *smart man*
So I called the next day and the nurse wanted me to email pictures. Within 30 min of emailing the pictures, the specialist called and said, "We need to see him next week".
So last week we made the trek back to Duke to have Levi's hand evaluated. (and his foot. Since all this started I noticed his one foot swelling too). I was so validated as a mom when the specialist and the nurses def. noticed the swelling and began to 'treat' us as if something was indeed going on that we needed to further evaluate. For such a long time I have thought that it was all in my head and I was worried to get down there only to have them 'laugh' at me over exaggerating something. I don't want to make mountains out of mole hills with this if I don't need to but I also don't want to ignore something just because I'm 'taking their word for it'.
Within the first 2 min of the doctors apt, Dr Bellet said, "Yes, I do believe we are starting to see the beginning of a vascular malformation in his hand and possibly his foot and I believe we need to do an MRI to 'see where we are at' in terms of what is going on underneath the skin."
While it is not of 'great concern' now, and we still need to take the wait and see approach, we need the MRI as our baseline for the future of what could happen. Or will. Vascular Malformations are progressive. Meaning, they don't 'get better'. They progress. They eventually get painful. But what we don't know is the rate of progression. Will it happen next month? Or will it progress when he is 80 years old? THAT we don't know. So she can't offer me any more information. And she can't really say much more than that until after she evaluates the MRI. There are treatments but from what we are told, you wait until the last minute for those.
Is this the start of a possible diagnosis of the Klippil Tranauy Weber Syndrome? We don't know. She said he was a 'tricky little guy' because she didn't think we would have any issues at all and here we are at 8 months old with some stuff going on. She didn't think so, but she couldn't deny it either.
So what now? Well, We go for the MRI on Friday Dec 12. Because he is a baby and you have to be perfectly still for the test, Levi will have to go under general anesthesia to have it done. *yuck*
Dr Bellet will now converse with a 'team' of other specialists to review Levi. A Radiologist was mentioned as was an Orthopedic doctor. She will meet with them after the MRI results are back and they will asses what is going on. What we need to do next. IF we need to do anything.
The most practical and possible outcome after the MRI is that she will prescribe us compression garments for him to wear to help keep the swelling down. Constant swelling can present other issues such as infection and clots. So we need to try and keep that down. And I need to keep feeling his hand for 'lumps under the skin'.
This just is with Levi. I can't change it. I have already worried for him as his mom when he starts to get a little older and kids start to 'notice' his port wine. And be kids. And be mean. That worries me more than the physical stuff has as I have already intercepted the general public making comments on my 'burned baby'. I know you can't fault people for being curious but sometimes, people have no filter.
The cool thing has been for me to watch Jacksons feisty, strong willed personality form and Levi's jolly happy personality begin to come out and I can only imagine that Jackson will constantly be Levi's 'body guard'. I can already see a bit into the future and anticipate getting 'that call' that Jackson is suspended from school for decking a kid on the playground for making fun of his brother. To which, this Mom will gladly take Jackson out for a milkshake. God made these two and their unique personalities just right. And that is getting more and more fun to see as their mama.
The verse that God has put in the forefront the most to me over this last week is Psalm 139. This is what I will tell Levi over and over again if it ever gets hard for him.
I like the way the Message puts it:
13-16 Oh yes, you shaped me first inside, then out;
you formed me in my mother’s womb.
I thank you, High God—you’re breathtaking!
Body and soul, I am marvelously made!
I worship in adoration—what a creation!
You know me inside and out,
you know every bone in my body;
You know exactly how I was made, bit by bit,
how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth;
all the stages of my life were spread out before you,
The days of my life all prepared
before I’d even lived one day.
Because of him being 'that' special, there are not many doctors familiar with the staining or the various things that 'could be' attached to so much of it. Therefore, as a serial googler, I have found my 'research' (if you will), to be frustrating. In other words, there just isn't much information on it other than fancy medical studies and journals which, lets face it, are just plain boring and confusing to read.
With that said, what I have found has at least been accurate information and with my little limited college biology background classes, I have had at least a vague understanding of enough of medical jargon to 'get my by' to be able to formulate and ask responsible and reasonable questions.
So here is the low down. At 2.5 months when we met with the specialist for the first time at Duke, we were told basically what we already knew: he had port wine stain; we were lucky it wasn't on his head and neck; there can be 'other physical things and syndromes' attached to as much of it as he has; and we just needed to take the wait and see approach to Levi.
We learned a few other things like: he will always struggle with eczema and dry skin; his port wine stain is like those mood rings, meaning that it changes color with his 'temps' or moods. Purple means he is cold, Red means he is hot, and when he is 'just fine' it fades a bit. Kind of cool. Really cool in fact. How many other people can brag about their mood ring kid?
Also, because of the numerous amounts of capillaries and such that are so close to the skin he can be quicker to get frost bite so we need to be sure to be very careful with him in the cold weather. Always keep hands and feet covered and him out of the cold.
We were sent home from that appointment with a few things to watch for but that she was certain that with the type of port wine stain he had, she didn't think he would ever have any more 'complications' other than it just being a vascular birthmark. She told us that IF anything presented itself it would probably be once he started walking.
Well, ok. However, as a mama, you tend to tuck a lot of the 'what if' information in the back of your head and secretly wonder things....all the time. I have always been watching.
Levi started crawling or attempting to not stay in one place from about the age of 4 months. That was when I started noticing the most that one hand looked larger than the other but I thought maybe I was just mistaking chubby baby hands for swollen and it was all in my head. But honestly there were some days and nights I would stare at his hand, and his little pointer finger in particular and think, "That just doesn't look normal". No one else seemed to 'notice' so apart from the random comments I would make to Wes from time to time, I just let it go.
At Levi's 6 month doctors apt though I just couldn't hardly stand it anymore and asked the pediatrician if it looked normal to him. Upon me pointing it out he very clearly said, "Yes, it is larger than the other hand. I think we should do an x-ray". (abnormal bone growth is one of the things you look for with the KTS syndrome) So we did. Results came back that it was 'just vascular' and we would reevaluate at his 9 month apt. Good news....right?
As the colder weather has set in, I have noticed the swelling more and more. Sometimes his pointer finger curls under as he crawls. Sometimes I have noticed him much fussier than normal. But he is a 8 month old baby and teething and growing and changing....so I let it go.
I had him back to the doctor a few weeks ago to check his ears for an ear infection. The doctor examining him noticed his hand right away and started asking a zillion questions and really examining the 'swollen' chubby hand. Yes, yes, it was swollen. *guess my eyes weren't playing tricks on me*. But again, its a weird physical anomaly we are dealing with here so even the doctors here aren't real 'schooled' in the 'what nexts' and don't offer me much other than, "give some Motrin for the inflammation".
As I was venting to Wes that evening about everyone now noticing Levi's hand but no one offering me what I should do about it, because it now stays in a constant state of swollen, he very calmly told me to call down to Duke and talk to them. We were established and she said if I ever had any questions I could call them. *smart man*
So I called the next day and the nurse wanted me to email pictures. Within 30 min of emailing the pictures, the specialist called and said, "We need to see him next week".
So last week we made the trek back to Duke to have Levi's hand evaluated. (and his foot. Since all this started I noticed his one foot swelling too). I was so validated as a mom when the specialist and the nurses def. noticed the swelling and began to 'treat' us as if something was indeed going on that we needed to further evaluate. For such a long time I have thought that it was all in my head and I was worried to get down there only to have them 'laugh' at me over exaggerating something. I don't want to make mountains out of mole hills with this if I don't need to but I also don't want to ignore something just because I'm 'taking their word for it'.
Within the first 2 min of the doctors apt, Dr Bellet said, "Yes, I do believe we are starting to see the beginning of a vascular malformation in his hand and possibly his foot and I believe we need to do an MRI to 'see where we are at' in terms of what is going on underneath the skin."
While it is not of 'great concern' now, and we still need to take the wait and see approach, we need the MRI as our baseline for the future of what could happen. Or will. Vascular Malformations are progressive. Meaning, they don't 'get better'. They progress. They eventually get painful. But what we don't know is the rate of progression. Will it happen next month? Or will it progress when he is 80 years old? THAT we don't know. So she can't offer me any more information. And she can't really say much more than that until after she evaluates the MRI. There are treatments but from what we are told, you wait until the last minute for those.
Is this the start of a possible diagnosis of the Klippil Tranauy Weber Syndrome? We don't know. She said he was a 'tricky little guy' because she didn't think we would have any issues at all and here we are at 8 months old with some stuff going on. She didn't think so, but she couldn't deny it either.
So what now? Well, We go for the MRI on Friday Dec 12. Because he is a baby and you have to be perfectly still for the test, Levi will have to go under general anesthesia to have it done. *yuck*
Dr Bellet will now converse with a 'team' of other specialists to review Levi. A Radiologist was mentioned as was an Orthopedic doctor. She will meet with them after the MRI results are back and they will asses what is going on. What we need to do next. IF we need to do anything.
The most practical and possible outcome after the MRI is that she will prescribe us compression garments for him to wear to help keep the swelling down. Constant swelling can present other issues such as infection and clots. So we need to try and keep that down. And I need to keep feeling his hand for 'lumps under the skin'.
This just is with Levi. I can't change it. I have already worried for him as his mom when he starts to get a little older and kids start to 'notice' his port wine. And be kids. And be mean. That worries me more than the physical stuff has as I have already intercepted the general public making comments on my 'burned baby'. I know you can't fault people for being curious but sometimes, people have no filter.
The cool thing has been for me to watch Jacksons feisty, strong willed personality form and Levi's jolly happy personality begin to come out and I can only imagine that Jackson will constantly be Levi's 'body guard'. I can already see a bit into the future and anticipate getting 'that call' that Jackson is suspended from school for decking a kid on the playground for making fun of his brother. To which, this Mom will gladly take Jackson out for a milkshake. God made these two and their unique personalities just right. And that is getting more and more fun to see as their mama.
The verse that God has put in the forefront the most to me over this last week is Psalm 139. This is what I will tell Levi over and over again if it ever gets hard for him.
I like the way the Message puts it:
13-16 Oh yes, you shaped me first inside, then out;
you formed me in my mother’s womb.
I thank you, High God—you’re breathtaking!
Body and soul, I am marvelously made!
I worship in adoration—what a creation!
You know me inside and out,
you know every bone in my body;
You know exactly how I was made, bit by bit,
how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth;
all the stages of my life were spread out before you,
The days of my life all prepared
before I’d even lived one day.
This means that my Levi, with his port wine stain and all that it entails, was meant to be. He is so stinking special. This wasn't a surprise to God in the least bit. In fact, this is who He made Levi to be. Rare genetic blip and all.
I call him my Tye Dyed baby. Because that is what his body looks like. A cool tattoo if you will. And I love every little bit of it.
I will do my best to keep you updated if and when something were to arise from this. But for now, we just go to the next step for him which is the MRI. And that is all we know. That is all I can answer for now. So that is what I have to rest in. Once the doctor can see beneath the skin at the veins and the blood flow, well, then hopefully we will have something more tangible to work with. Until then, all we can do is take it one day at a time. One step at a time. Savor his moments of just being a 8 month old and stop trying to worry about the what ifs for his future.
Wes and I are learning to roll with the punches of this thing. Its getting a bit expensive I will admit. And we don't know what the future looks like in terms of compression garments, travel expenses, more specialists. But we are just taking it one step at a time, one day at a time. One trip at a time for now. God has provided up till this point and I know He will continue to do so. This hasn't taken Him by surprise.
We also don't know if Levi will have to wear full body garments or just garments on his hand and foot. Either way if its full body we are going to request that they look like a spider man suit. If its just a glove, maybe we can bedazzle it a bit to look like a Michael Jackson glove. Either way, we will try our best to make light of it, roll with it, and to encourage him to love who God made him to be.
I call him my Tye Dyed baby. Because that is what his body looks like. A cool tattoo if you will. And I love every little bit of it.
I will do my best to keep you updated if and when something were to arise from this. But for now, we just go to the next step for him which is the MRI. And that is all we know. That is all I can answer for now. So that is what I have to rest in. Once the doctor can see beneath the skin at the veins and the blood flow, well, then hopefully we will have something more tangible to work with. Until then, all we can do is take it one day at a time. One step at a time. Savor his moments of just being a 8 month old and stop trying to worry about the what ifs for his future.
Wes and I are learning to roll with the punches of this thing. Its getting a bit expensive I will admit. And we don't know what the future looks like in terms of compression garments, travel expenses, more specialists. But we are just taking it one step at a time, one day at a time. One trip at a time for now. God has provided up till this point and I know He will continue to do so. This hasn't taken Him by surprise.
We also don't know if Levi will have to wear full body garments or just garments on his hand and foot. Either way if its full body we are going to request that they look like a spider man suit. If its just a glove, maybe we can bedazzle it a bit to look like a Michael Jackson glove. Either way, we will try our best to make light of it, roll with it, and to encourage him to love who God made him to be.
