duckytwins
3 boys and 3 angels
- Joined
- Aug 29, 2011
- Messages
- 3,948
- Reaction score
- 0
I hope it's okay to come here and just put down what we've been through this year. I can't wait to see 2011 end because it's been so very trying.
I hope no one takes this post the wrong way. I just need some support.
Late in December, last year, one of my boys, Jonathan, started not feeling well. His brother had a cold, so we thought he was going to be getting it too. Turns out, he never got that cold. Instead, his joints started to ache, he was having trouble walking and wouldn't eat.
I brought him to his pediatrician and he collapsed on the floor. His pediatrician was baffled and said we should bring Jonathan to the children's hospital. They diagnosed him with Toxic Synovitis, which is when an infection (the cold he didn't get?) settles into the joints and causes pain. They sent us home with a rigorous regimine of Tylenol.
A few days later, he wasn't getting any better, so I called the on-call doctor. She said try alternating the Tylenol with Motrin and he should start feeling better by the end of the weekend.
He didn't. Jonathan couldn't walk. He wouldn't eat and could barely sit up. I freaked out and called 911. They took him back to children's. He was admitted.
After several horrific days of terrible tests (including a spinal tap and a test they had to put him under for and he stopped breathing), Jonathan was diagnosed with Guillain-Barre. A VERY rare autoimmune disease that attacks the nervous system. His tiny body was trying to destroy itself. He spent the month of January in the hospital, having treatments to replace the myelin sheath of his nerves and supress the disease, and therapies to teach him to walk again, help him dress himself, feed himself, etc. I stayed with him every day. It was weeks before I could even touch, nevermind hold, my baby!
Thankfully, Jonathan recovered. A miracle? I think so. But I spent the next 4 months, out of work, taking him to his therapies and followup appointments 4 days a week.
One crisis over. Thank God!
Later in the year, I started having a weird pain in my lower abdomen. I then found a lump. I went to my gynocologist, thinking it was something related to that area. He thought it was a hernia and sent me for an MRI. They MRI showed nothing, but the pain continued. (Needless to say, it remains undiagnosed and untreated)
A few weeks later, we lost my grandmother. 6 days before her 90 birthday. It was a surprise and a shock. Without going into much detail, I had to be the one to tell my godfather, who was flying in from Texas that day to see his mother, that she had died that morning. It was one of the worst experiences of my life to be in a crowded airport and have to tell someone his mother just passed away.
The next month, I started having a really bad pain under my arm. The following day, the pain was so bad, I couldn't move my arm. I went to urgent care and was told to have an ultrasound done. They found 4 masses under my arm, two of which, were vascular. Scared to death, I was sent for a biopsy. The biopsy came back normal and I had no answers.
Thankfully, the swelling of the masses went down, the pain disappeared and we decided it was an infection of the lymph nodes under my arm.
Another three crises over! Enough for one year? Nope.
The following month (October), I found out I was pregnant! YAY! Great news! I had some bleeding early on, but had ultrasounds and it seemed everything was okay.
That takes me to last week. I went in for, what I thought, was a regular routine NT scan. I was lead to believe the baby was fine. Until I got a phone call from my doctor that afternoon. He said he thought the baby's facial structure looked a little off and told me to go to the hospital for another scan. DH went with me the next day and we got the news...
There was a definite facial and head structure abnormality and the doctor said there was too much fluid in the brain. She suspected trisomy 13 and asked me to get a CVS done.
We went in for the CVS on Friday afternoon. We were told the results would be back on Tuesday or Wednesday. I got a phone call this afternoon, telling me that trisomy 13 had been confirmed and the baby will not live. I was home alone...
We will go see a genetic counselor tomorrow, then speak with my doctor about options (we can let nature take the baby, or we can terminate the pregnancy).
So that's been my year. One shitty thing after another, after another, after another...
This year HAS to end soon. I can't take much more...
I hope no one takes this post the wrong way. I just need some support.
Late in December, last year, one of my boys, Jonathan, started not feeling well. His brother had a cold, so we thought he was going to be getting it too. Turns out, he never got that cold. Instead, his joints started to ache, he was having trouble walking and wouldn't eat.
I brought him to his pediatrician and he collapsed on the floor. His pediatrician was baffled and said we should bring Jonathan to the children's hospital. They diagnosed him with Toxic Synovitis, which is when an infection (the cold he didn't get?) settles into the joints and causes pain. They sent us home with a rigorous regimine of Tylenol.
A few days later, he wasn't getting any better, so I called the on-call doctor. She said try alternating the Tylenol with Motrin and he should start feeling better by the end of the weekend.
He didn't. Jonathan couldn't walk. He wouldn't eat and could barely sit up. I freaked out and called 911. They took him back to children's. He was admitted.
After several horrific days of terrible tests (including a spinal tap and a test they had to put him under for and he stopped breathing), Jonathan was diagnosed with Guillain-Barre. A VERY rare autoimmune disease that attacks the nervous system. His tiny body was trying to destroy itself. He spent the month of January in the hospital, having treatments to replace the myelin sheath of his nerves and supress the disease, and therapies to teach him to walk again, help him dress himself, feed himself, etc. I stayed with him every day. It was weeks before I could even touch, nevermind hold, my baby!
Thankfully, Jonathan recovered. A miracle? I think so. But I spent the next 4 months, out of work, taking him to his therapies and followup appointments 4 days a week.
One crisis over. Thank God!
Later in the year, I started having a weird pain in my lower abdomen. I then found a lump. I went to my gynocologist, thinking it was something related to that area. He thought it was a hernia and sent me for an MRI. They MRI showed nothing, but the pain continued. (Needless to say, it remains undiagnosed and untreated)
A few weeks later, we lost my grandmother. 6 days before her 90 birthday. It was a surprise and a shock. Without going into much detail, I had to be the one to tell my godfather, who was flying in from Texas that day to see his mother, that she had died that morning. It was one of the worst experiences of my life to be in a crowded airport and have to tell someone his mother just passed away.
The next month, I started having a really bad pain under my arm. The following day, the pain was so bad, I couldn't move my arm. I went to urgent care and was told to have an ultrasound done. They found 4 masses under my arm, two of which, were vascular. Scared to death, I was sent for a biopsy. The biopsy came back normal and I had no answers.
Thankfully, the swelling of the masses went down, the pain disappeared and we decided it was an infection of the lymph nodes under my arm.
Another three crises over! Enough for one year? Nope.
The following month (October), I found out I was pregnant! YAY! Great news! I had some bleeding early on, but had ultrasounds and it seemed everything was okay.
That takes me to last week. I went in for, what I thought, was a regular routine NT scan. I was lead to believe the baby was fine. Until I got a phone call from my doctor that afternoon. He said he thought the baby's facial structure looked a little off and told me to go to the hospital for another scan. DH went with me the next day and we got the news...
There was a definite facial and head structure abnormality and the doctor said there was too much fluid in the brain. She suspected trisomy 13 and asked me to get a CVS done.
We went in for the CVS on Friday afternoon. We were told the results would be back on Tuesday or Wednesday. I got a phone call this afternoon, telling me that trisomy 13 had been confirmed and the baby will not live. I was home alone...
We will go see a genetic counselor tomorrow, then speak with my doctor about options (we can let nature take the baby, or we can terminate the pregnancy).
So that's been my year. One shitty thing after another, after another, after another...
This year HAS to end soon. I can't take much more...
so sorry hun, I really hope 2012 is a better year for you and your family.
xx
Hope 2012 is better for both of us x 
