Multiple Congenital Anomalies... How are you coping?

MYBezalel

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Hi,

My son has a congenital rubella syndrome. I was infected with the rubella virus back when I was 5weeks preggy with him. It was so sudden, and rubella measles at that time was going around our place and I thought that being infected with measles once guarantees that there won't be any 2nd infection.

His eyes, heart, toes, probably his hearing (we are still waiting for his schedule to check his hearing and it's by Aug) and size were affected.

He has congenital cataracts (to be removed after his PDA Ligation), multiple congenital heart anomalies, IUGR (born 1.3k weight), his toes look like they overlap each other but they don't stick with each other, he does not also respond to sounds/noises that much, he was anemic when he was born (but dr. said this is a sign of rubella infection) & he does not have a philtrum (a pedia said this is a sign of having a syndrome).

Having all this at once and going to different specialists could sometimes be frustrating for a 1st time mom. Not having any background of how to take care a baby, it made me have to learn a lot at once. :shrug:

At first, I was really sad for causing him these. A lot of doctors have already asked me why I did not get the rubella vaccine before I got pregnant. Who would want to cause their babies so much harm? If only I could turn back time. But all we have is to move forward with our lives, and accepting reality.

I believed it happened for a reason. I may not know that very particular reason but, as a Catholic, I've always had Faith that everything will be ok, that whatever problems we're facing right now, it will pass. God let things happen for a reason. So far, the only reason I found is how much my son changed my life when he was born. How much I was in a roller coaster ride, that I did not mind having as long as I know he's with me.

In spite how people viewed what we're going through, how much they sigh in grief... I still feel blessed. Knowing after 9months of a challenging pregnancy, he's now with us, cutting our days short and the nights longer :sleep:, opened our eyes and hearts to new things, tested our patience, brought the family into a tighter bond :hugs:, brought a lot of people together to join his cause, helping us appreciate the tiniest details of every moment we have...

In spite of what we are going through, seeing him smile and laugh despite not being able to see is priceless. Very priceless to me. It proves that even after what he's been through, he still has a reason to be happy. So why can't I? Why can't we? Day by day he taught me so much about life.

I admit it is hard, the things we have to go through and have gone through. :nope: It was really tough, and I could just cry all day for the pressure it has that pushed me and my husband to the limits. In a place where congenital anomalies are not widely understood and known, It's hard when people stare at your son as if his anomalies aren't that obvious already.

But who would fight for him? Of course we do, not just as his parents. But because we love him so much for who and what he is. He has brought us so much joy, and we choose to see things in that perspective.

We have learned to see things at a more positive way.

How about you mommies? How were you able to cope up with your LO's special needs?:hug:

https://i23.photobucket.com/albums/b353/Kagami-Wings/cd79fe66-620a-48f4-a628-28533b4602fd_zps1736a583.jpg
 
hi,

my son has a congenital rubella syndrome. I was infected with the rubella virus back when i was 5weeks preggy with him. It was so sudden, and rubella measles at that time was going around our place and i thought that being infected with measles once guarantees that there won't be any 2nd infection.

His eyes, heart, toes, probably his hearing (we are still waiting for his schedule to check his hearing and it's by aug) and size were affected.

He has congenital cataracts (to be removed after his pda ligation), multiple congenital heart anomalies, iugr (born 1.3k weight), his toes look like they overlap each other but they don't stick with each other, he does not also respond to sounds/noises that much, he was anemic when he was born (but dr. Said this is a sign of rubella infection) & he does not have a philtrum (a pedia said this is a sign of having a syndrome).

Having all this at once and going to different specialists could sometimes be frustrating for a 1st time mom. Not having any background of how to take care a baby, it made me have to learn a lot at once. :shrug:

At first, i was really sad for causing him these. A lot of doctors have already asked me why i did not get the rubella vaccine before i got pregnant. Who would want to cause their babies so much harm? If only i could turn back time. But all we have is to move forward with our lives, and accepting reality.

I believed it happened for a reason. I may not know that very particular reason but, as a catholic, i've always had faith that everything will be ok, that whatever problems we're facing right now, it will pass. God let things happen for a reason. So far, the only reason i found is how much my son changed my life when he was born. How much i was in a roller coaster ride, that i did not mind having as long as i know he's with me.

In spite how people viewed what we're going through, how much they sigh in grief... I still feel blessed. Knowing after 9months of a challenging pregnancy, he's now with us, cutting our days short and the nights longer :sleep:, opened our eyes and hearts to new things, tested our patience, brought the family into a tighter bond :hugs:, brought a lot of people together to join his cause, helping us appreciate the tiniest details of every moment we have...

In spite of what we are going through, seeing him smile and laugh despite not being able to see is priceless. Very priceless to me. It proves that even after what he's been through, he still has a reason to be happy. So why can't i? Why can't we? Day by day he taught me so much about life.

I admit it is hard, the things we have to go through and have gone through. :nope: It was really tough, and i could just cry all day for the pressure it has that pushed me and my husband to the limits. In a place where congenital anomalies are not widely understood and known, it's hard when people stare at your son as if his anomalies aren't that obvious already.

But who would fight for him? Of course we do, not just as his parents. But because we love him so much for who and what he is. He has brought us so much joy, and we choose to see things in that perspective.

We have learned to see things at a more positive way.

How about you mommies? How were you able to cope up with your lo's special needs?:hug:

https://i23.photobucket.com/albums/b353/kagami-wings/cd79fe66-620a-48f4-a628-28533b4602fd_zps1736a583.jpg

he is beautiful....
 
I have no advice or experience I just wanted to say that you're a wonderful mother. He's a wonderful little boy who will flourish with your love xx
 
I have no advice or experience I just wanted to say that you're a wonderful mother. He's a wonderful little boy who will flourish with your love xx

Thank you sequeena, this is our 1st baby. I am so new to being a mom. We're living it one day at a time, but my little guy never fails to amaze us all :)
 
I have no advice or experience I just wanted to say that you're a wonderful mother. He's a wonderful little boy who will flourish with your love xx

I couldn't agree more. Best of luck to you. :hugs:
 
Hi, beautiful little boy you have! What an awesome Mama you are too!

I have a little girl with Goldenhar Syndrome, she was born with no left ear, and the left side of her face is smaller then the right. I had NO idea she would be born with this, I had a very textbook pregnancy until her birth. Her movements stopped at 39 weeks, I went in to be checked and her heartrate was at 280bpm and I had to have an emergency c section, it happened so fast my husband didn't make it across town to the hospital in time.

So since her birth we have seen Audiologists, ENT, cardiologist, Opthalmologist, hematologist, geneticist and then we see a paediatrician (which is not the norm where I live, you need to be referred to a ped).

I am also a first time Mum, and this has been such a rollercoaster, we have a different doctor appointment every two weeks, blood tests, hearing tests, and I have to explain to so many people what Goldenhar Syndrome is because it is very rare.

You said everything so well in your post, I love your outlook. I'm starting to come around, I love my daughter so much I just can't help but think it's just not fair. I have a hard time with all the doctor appointments, they exhaust me.

I just got back from seeing her audiologist and she is going to be fitted for a softband hearing aid in a couple weeks.

Anyway, i'm not sure my story is what you were looking for, but I wanted to reply!
 
Hi, beautiful little boy you have! What an awesome Mama you are too!

I have a little girl with Goldenhar Syndrome, she was born with no left ear, and the left side of her face is smaller then the right. I had NO idea she would be born with this, I had a very textbook pregnancy until her birth. Her movements stopped at 39 weeks, I went in to be checked and her heartrate was at 280bpm and I had to have an emergency c section, it happened so fast my husband didn't make it across town to the hospital in time.

So since her birth we have seen Audiologists, ENT, cardiologist, Opthalmologist, hematologist, geneticist and then we see a paediatrician (which is not the norm where I live, you need to be referred to a ped).

I am also a first time Mum, and this has been such a rollercoaster, we have a different doctor appointment every two weeks, blood tests, hearing tests, and I have to explain to so many people what Goldenhar Syndrome is because it is very rare.

You said everything so well in your post, I love your outlook. I'm starting to come around, I love my daughter so much I just can't help but think it's just not fair. I have a hard time with all the doctor appointments, they exhaust me.

I just got back from seeing her audiologist and she is going to be fitted for a softband hearing aid in a couple weeks.

Anyway, i'm not sure my story is what you were looking for, but I wanted to reply!

Hi! My heart goes out to you :hug:

We all have our own struggles. Life could never be perfect. It only is a matter of perspective. How we live life in as much as we could. My son taught me this. To live life in every moment.

I do have regrets... There are times I would ask, 'was I so bad that this is happening to me? Am I being punished?' But I was thinking, if this would not have happened, I never would have grown spiritually, emotionally, and mentally this much. God must have been calling me when I was blind and deaf about the things that surround me. I admit I'm a stubborn person. But I never would have though humans could be this fragile. When I gave birth to Bezalel, it humbled me so much.

A journey of a mother of a special child is never easy, but I always think it is more difficult for my son. Yet he amaze me so much when he laughs and smile putting my worries and frustrations into void.

For now, we're taking it one day at a time. Bezalel gave us so much hope, thus I gave him his name. It means, 'Under God's Protection'.

Here's a pic I took of him recently:
https://i23.photobucket.com/albums/b353/Kagami-Wings/bezalel141_zps65f5216c.jpg
 
Hi, beautiful little boy you have! What an awesome Mama you are too!

I have a little girl with Goldenhar Syndrome, she was born with no left ear, and the left side of her face is smaller then the right. I had NO idea she would be born with this, I had a very textbook pregnancy until her birth. Her movements stopped at 39 weeks, I went in to be checked and her heartrate was at 280bpm and I had to have an emergency c section, it happened so fast my husband didn't make it across town to the hospital in time.

So since her birth we have seen Audiologists, ENT, cardiologist, Opthalmologist, hematologist, geneticist and then we see a paediatrician (which is not the norm where I live, you need to be referred to a ped).

I am also a first time Mum, and this has been such a rollercoaster, we have a different doctor appointment every two weeks, blood tests, hearing tests, and I have to explain to so many people what Goldenhar Syndrome is because it is very rare.

You said everything so well in your post, I love your outlook. I'm starting to come around, I love my daughter so much I just can't help but think it's just not fair. I have a hard time with all the doctor appointments, they exhaust me.

I just got back from seeing her audiologist and she is going to be fitted for a softband hearing aid in a couple weeks.

Anyway, i'm not sure my story is what you were looking for, but I wanted to reply!

:hugs:hi, I saw your post, I know u don't know me but I wanted to drop in and offer some support, my daughter Danielle is 20 months old born with a bilateral cleft lip and cleft palate she also has 3 dermoids in her left eye, a heart flow murmur ,3 skin tags and her upper jaw bone (maxilla) is in 3 pieces instead of 1 and the middle maxilla isn't connected to her skull, she has already had multiple surgeries with more to come. Anyways she finally got her genetics test done on July 25th she also is being tested for goldenhar syndrome. many of her doctors think she has it, because she shows so many of the abnormalties that is common. we are waiting for the results and crossing our fingers hoping our baby will get a diagnosis. Im not very familiar with it because I also had never heard of it until her birth but have read everything I could find about it since her birth. Sorry I know this is really long. but I wanted to let u know that if u ever need to talk im here. don't hesitate...... best wishes to you and your little l:angel:
 
MYBezalel He is a beautiful little guy!
 
Hi, beautiful little boy you have! What an awesome Mama you are too!

I have a little girl with Goldenhar Syndrome, she was born with no left ear, and the left side of her face is smaller then the right. I had NO idea she would be born with this, I had a very textbook pregnancy until her birth. Her movements stopped at 39 weeks, I went in to be checked and her heartrate was at 280bpm and I had to have an emergency c section, it happened so fast my husband didn't make it across town to the hospital in time.

So since her birth we have seen Audiologists, ENT, cardiologist, Opthalmologist, hematologist, geneticist and then we see a paediatrician (which is not the norm where I live, you need to be referred to a ped).

I am also a first time Mum, and this has been such a rollercoaster, we have a different doctor appointment every two weeks, blood tests, hearing tests, and I have to explain to so many people what Goldenhar Syndrome is because it is very rare.

You said everything so well in your post, I love your outlook. I'm starting to come around, I love my daughter so much I just can't help but think it's just not fair. I have a hard time with all the doctor appointments, they exhaust me.

I just got back from seeing her audiologist and she is going to be fitted for a softband hearing aid in a couple weeks.

Anyway, i'm not sure my story is what you were looking for, but I wanted to reply!

:hugs:hi, I saw your post, I know u don't know me but I wanted to drop in and offer some support, my daughter Danielle is 20 months old born with a bilateral cleft lip and cleft palate she also has 3 dermoids in her left eye, a heart flow murmur ,3 skin tags and her upper jaw bone (maxilla) is in 3 pieces instead of 1 and the middle maxilla isn't connected to her skull, she has already had multiple surgeries with more to come. Anyways she finally got her genetics test done on July 25th she also is being tested for goldenhar syndrome. many of her doctors think she has it, because she shows so many of the abnormalties that is common. we are waiting for the results and crossing our fingers hoping our baby will get a diagnosis. Im not very familiar with it because I also had never heard of it until her birth but have read everything I could find about it since her birth. Sorry I know this is really long. but I wanted to let u know that if u ever need to talk im here. don't hesitate...... best wishes to you and your little l:angel:

Oh I'm sorry your little girl has already had to go through a bunch of surgeries. You're a strong Mama to get through all that!

Thank you for replying! I know Goldenhar is very rare, and I am always trying to connect with people in a similar situation.

I have to be very thankful that our LO isn't going to need any surgeries until we decide if we fix her ear. Right now when you look at her she looks pretty normal, except the left side of her face is smaller, and she has no left ear. She had skin tags around her left ear at birth but they were removed.

Does your LO have any hearing concerns?
 
Hi, beautiful little boy you have! What an awesome Mama you are too!

I have a little girl with Goldenhar Syndrome, she was born with no left ear, and the left side of her face is smaller then the right. I had NO idea she would be born with this, I had a very textbook pregnancy until her birth. Her movements stopped at 39 weeks, I went in to be checked and her heartrate was at 280bpm and I had to have an emergency c section, it happened so fast my husband didn't make it across town to the hospital in time.

So since her birth we have seen Audiologists, ENT, cardiologist, Opthalmologist, hematologist, geneticist and then we see a paediatrician (which is not the norm where I live, you need to be referred to a ped).

I am also a first time Mum, and this has been such a rollercoaster, we have a different doctor appointment every two weeks, blood tests, hearing tests, and I have to explain to so many people what Goldenhar Syndrome is because it is very rare.

You said everything so well in your post, I love your outlook. I'm starting to come around, I love my daughter so much I just can't help but think it's just not fair. I have a hard time with all the doctor appointments, they exhaust me.

I just got back from seeing her audiologist and she is going to be fitted for a softband hearing aid in a couple weeks.

Anyway, i'm not sure my story is what you were looking for, but I wanted to reply!

:hugs:hi, I saw your post, I know u don't know me but I wanted to drop in and offer some support, my daughter Danielle is 20 months old born with a bilateral cleft lip and cleft palate she also has 3 dermoids in her left eye, a heart flow murmur ,3 skin tags and her upper jaw bone (maxilla) is in 3 pieces instead of 1 and the middle maxilla isn't connected to her skull, she has already had multiple surgeries with more to come. Anyways she finally got her genetics test done on July 25th she also is being tested for goldenhar syndrome. many of her doctors think she has it, because she shows so many of the abnormalties that is common. we are waiting for the results and crossing our fingers hoping our baby will get a diagnosis. Im not very familiar with it because I also had never heard of it until her birth but have read everything I could find about it since her birth. Sorry I know this is really long. but I wanted to let u know that if u ever need to talk im here. don't hesitate...... best wishes to you and your little l:angel:

Oh I'm sorry your little girl has already had to go through a bunch of surgeries. You're a strong Mama to get through all that!

Thank you for replying! I know Goldenhar is very rare, and I am always trying to connect with people in a similar situation.

I have to be very thankful that our LO isn't going to need any surgeries until we decide if we fix her ear. Right now when you look at her she looks pretty normal, except the left side of her face is smaller, and she has no left ear. She had skin tags around her left ear at birth but they were removed.

Does your LO have any hearing concerns?

hello again thanks for replying, yes the surgeries were extremely hard, no mother wants to see her baby go through anything like that, but now u cant even tell she was born with the cleft abnormalties, the surgeon did a wonderful job. although I must admit I cried after her surgery for her cleft lip repair because they changed her smile, I loved the big beautiful smile she had ,and it took her a while to start smiling again, but now its just as big as ever.
W are stil waiting on the results for her goldenhar test they said it will take a couple weeks...But as u said I also think its great to be able to chat on here with ppl because I don't actually know anyone who has a child going through anything similar to my Lo
s he did have some hearing problems at birth she failed herhearing screen. she has had tubes put in her ears twice, she seems to keep ear infections but the tubes help a little to keep some of the fluids off her ears.
she also had skin tags removed, she had one on her nostril and 1 beside both her ears. so she had a total of 3 removed.
she has been through a lot for such a young age
one of my favorite quotes is... The toughest battles are given to the strongest soldiers.... I always try to remember that because I strongly believe and know in my heart that my baby girl was sent to me like that for a reason, so I dnt question it, Our babies are very fortunate to have strong mothers like all of us, it makes it so much better since they have such great support.
look at me sorry, lol I will just ramble on and on when it comes to my Lo .:blush:
 
hello again thanks for replying, yes the surgeries were extremely hard, no mother wants to see her baby go through anything like that, but now u cant even tell she was born with the cleft abnormalties, the surgeon did a wonderful job. although I must admit I cried after her surgery for her cleft lip repair because they changed her smile, I loved the big beautiful smile she had ,and it took her a while to start smiling again, but now its just as big as ever.
W are stil waiting on the results for her goldenhar test they said it will take a couple weeks...But as u said I also think its great to be able to chat on here with ppl because I don't actually know anyone who has a child going through anything similar to my Lo
s he did have some hearing problems at birth she failed herhearing screen. she has had tubes put in her ears twice, she seems to keep ear infections but the tubes help a little to keep some of the fluids off her ears.
she also had skin tags removed, she had one on her nostril and 1 beside both her ears. so she had a total of 3 removed.
she has been through a lot for such a young age
one of my favorite quotes is... The toughest battles are given to the strongest soldiers.... I always try to remember that because I strongly believe and know in my heart that my baby girl was sent to me like that for a reason, so I dnt question it, Our babies are very fortunate to have strong mothers like all of us, it makes it so much better since they have such great support.
look at me sorry, lol I will just ramble on and on when it comes to my Lo .:blush:

Well said momma! :hugs: I totally agree with you. You are not alone on this, I also believe it happens for a reason. No matter how other people see it, but to us, Bezalel is such a blessing. His journey may be tough, but we will walk through that journey with him. The tears and the pain we've been through, actually does not mean we are weak. But it's what makes us stronger.

We are yet to know Bezalel's hearing condition this Aug 7. He is sched for a hearing test in another hearing center since the apparatus used to check his hearing will not fit back when he was still in the nursery. I feel so anxious... But I am already expecting there is a problem since he does not react to sounds/noise they normally should. :nope:
 
hello again thanks for replying, yes the surgeries were extremely hard, no mother wants to see her baby go through anything like that, but now u cant even tell she was born with the cleft abnormalties, the surgeon did a wonderful job. although I must admit I cried after her surgery for her cleft lip repair because they changed her smile, I loved the big beautiful smile she had ,and it took her a while to start smiling again, but now its just as big as ever.
W are stil waiting on the results for her goldenhar test they said it will take a couple weeks...But as u said I also think its great to be able to chat on here with ppl because I don't actually know anyone who has a child going through anything similar to my Lo
s he did have some hearing problems at birth she failed herhearing screen. she has had tubes put in her ears twice, she seems to keep ear infections but the tubes help a little to keep some of the fluids off her ears.
she also had skin tags removed, she had one on her nostril and 1 beside both her ears. so she had a total of 3 removed.
she has been through a lot for such a young age
one of my favorite quotes is... The toughest battles are given to the strongest soldiers.... I always try to remember that because I strongly believe and know in my heart that my baby girl was sent to me like that for a reason, so I dnt question it, Our babies are very fortunate to have strong mothers like all of us, it makes it so much better since they have such great support.
look at me sorry, lol I will just ramble on and on when it comes to my Lo .:blush:

Well said momma! :hugs: I totally agree with you. You are not alone on this, I also believe it happens for a reason. No matter how other people see it, but to us, Bezalel is such a blessing. His journey may be tough, but we will walk through that journey with him. The tears and the pain we've been through, actually does not mean we are weak. But it's what makes us stronger.

We are yet to know Bezalel's hearing condition this Aug 7. He is sched for a hearing test in another hearing center since the apparatus used to check his hearing will not fit back when he was still in the nursery. I feel so anxious... But I am already expecting there is a problem since he does not react to sounds/noise they normally should. :nope:

my Lo was reacting to much noise either when she was smaller they did a hearing screen and it failed but then we found out she was holding fluids on her ear drum an that was effecting her hearing , hopefully it is something like that.
I couldn't agree with you more, here I go another quote .... crying isn't a symbol of weakness, when we were born crying was a symbol that we are alive.... We have shed so many tears with our baby, but we have also watched her grow and blossom into a beautiful, intelligent toddler, she is just like any other toddler, she is actually one of the happiest babies i have ever seen. Yep, she is my world and she has had me and her father by the heart since we found out we were pregnant with her. we found out she was going to have the cleft lip and palate when I was 20 weeks pregnant with her, I was terrified at 1st not knowing anything about her condition but now looking back I couldn't imagine her born any other way, she was born perfect from head to toe.
your Lo is so adorable, I love that pic u posted on here with that huge smile , he looks like such a happy little guy. U seem like such a proud mom, I love seeing proud mommies.
I will be crossing my fingers and toes for his hearing test, just remember that no matter whet the results are, your a strong mommy, and there isn't nothing a strong mother cant overcome with her baby.... hope to hear back from u soon......... fingers are crossed
 
my Lo was reacting to much noise either when she was smaller they did a hearing screen and it failed but then we found out she was holding fluids on her ear drum an that was effecting her hearing , hopefully it is something like that.
I couldn't agree with you more, here I go another quote .... crying isn't a symbol of weakness, when we were born crying was a symbol that we are alive.... We have shed so many tears with our baby, but we have also watched her grow and blossom into a beautiful, intelligent toddler, she is just like any other toddler, she is actually one of the happiest babies i have ever seen. Yep, she is my world and she has had me and her father by the heart since we found out we were pregnant with her. we found out she was going to have the cleft lip and palate when I was 20 weeks pregnant with her, I was terrified at 1st not knowing anything about her condition but now looking back I couldn't imagine her born any other way, she was born perfect from head to toe.
your Lo is so adorable, I love that pic u posted on here with that huge smile , he looks like such a happy little guy. U seem like such a proud mom, I love seeing proud mommies.
I will be crossing my fingers and toes for his hearing test, just remember that no matter whet the results are, your a strong mommy, and there isn't nothing a strong mother cant overcome with her baby.... hope to hear back from u soon......... fingers are crossed

Thank you 1momsheart! I am actually anxious of the results. But this little guy just knocks me off my feet. Whenever there are times I am at deep thoughts, he would sometimes scream in glee or laugh & smile. Made me forget my worries all the time.

God does know where our heart is and how to lift us up when we are weak, because He gave us such precious babies.

I've also felt the worry & frustration during my pregnancy, because I am at lost on how to take care of a baby that needs special care. But instincts do kick in once we become mothers, because we love beyond what we see and our hearts grow so much because of that love. Something no money could even equal.

If there are moms who would say that, they are blessed to have a healthy baby... I also think that having a special baby, makes every moment extra special~ :hugs:
 
Hi Ladies!

We will be waiting for Bezalel's ABR test results for about a week. But we did get the initial report. Both his ears have profound hearing loss...:cry:

We will still wait for the full report though.
 
I'm sorry to hear about the profound hearing loss. Did you get the full report back yet?
 
I'm sorry to hear about the profound hearing loss. Did you get the full report back yet?

Hi DebbieF!

Sorry took soooo long for me to reply. (-_-)

Well we did, he does have profound hearing loss both ears. We are also not sure about hearing aids if it will help. I hope it will, at least he could hear even a little. :( Also, for cochlear implants, it's veeeery expensive and we could not afford it. :(

But for now, my little guy is growing taller. & I love those cheeks that are looking more puffy now. Also, his eyes are not sunken like before. We're still on line for his heart operation. We were suppose to have the request for his lab today, but due to the aftershocks from the earthquake we had last Oct 15, it has been cancelled. Engineers are still checking the hospital building! :/ So the operation will once again be delayed. (sigh)

I would like to share his pic though, This is him now:
https://i23.photobucket.com/albums/b353/Kagami-Wings/bezalel182_zpsf3968e19.jpg
 

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