How did you feel when you first found out? How do you feel if it's been a while since you learned about it?
I realised something was going on with my daughter when she was 1 mo old, she is now 4.5 years old. I was very scared, I didnt know what to do and even though she is our 3rd child, it was so different. I later became her main advocate and am still. I am tough, understanding, knowledgable and continue to advocate for my princess.
She is so far diagnosed with: apnea, bradycardia, tachycardia, failure to thrive, sinus arrhythmia, and has an irregular extra heart beat. She is doing much better, but there are still many issues and little answers to all her pieces of this puzzle. We continue to push doctors, see many specialist, go through lots of testing, but I want nothing but the best for my daughter.
My daughter was diagnosed with Rett Syndrome at age 2. She is 10 now. We knew something was wrong since she was not doing much and was very floppy with her muscle tone. We started the "doctor shuffle" when she was 8 months old, trying to find out what was wrong. When she was diagnosed, I was devastated. We had hoped that whatever the problem was, it could be helped. But to sit there holding her and them telling us the difficulties she would face, she most likely would not walk, crawl or talk, she would start having seizures and various other issues, it was awful. All my dreams for her went out the window. All dreams of playdates, dance class, sleep overs, baking cookies together etc. just died. I was depressed and down for a few months. I felt like I had done something wrong, what could I have done differently? Then after a while, we got into our routine of dr visits, therapies, etc and I realized moping wasn't helping. I realized there was this amazingly beautiful sweet baby who needed me and I needed her. I still have days where I get so down about it all, but mostly, I snuggle her up and spoil her rotten and show her off to the world. She is amazing.
My daughter has a very disabling condition called Rett Syndrome. There are about 15,000 people in the US who have it. It has been cured in mice and new research findings show this condition can be cured in human patients. So I am selling Avon to raise research money. Fifty percent of my profit goes to research. Please consider buying your Avon goodies from me, Thank you! www.youravon.com/tonyahanna
Scared... I started noticing problems when my oldest son was two. He started having headaches and tremor like shaking in his hands. Doctors found no reason for and MRI. Oct. 2011 he finally got an MRI (age 5), they found a 3/4" pineal cyst in his brain. My heart dropped. Since then he has been diagnosed with asthma, anxiety, migraines, color blindness, insomnia (longest my son has stayed up is 38 hrs), acid reflex, he has weighed 40lbs even for over a year (great eater may i add), and no one knows why he shakes. Im just as scared now as when I started getting answers!
My youngest is two. He has a rare form of sleep apnea, his oxygen gets down to 70% at night..Every morning I wake up praying hes still breathing, they say hes to small for a sleep apnea monitor (cords may wrap around his neck) He also has a weak immune system, he just got over a ear infection, eye infection, sinus infection, and pneumonia which he had all at the same time..
I'm stressed, scared, and very over protective!
I knew something was wrong before hte drs did. It was so upsetting when they dismissed me like I was an over-reacting mommy when it was so obvious to me there was a problem. Once the drs finally got on the ball, there was a slight sense of relief that I wasn't crazy after all. But even when they did get on the ball, it was quite some time before we got him thriving. It just felt like this endless uphill batter. I mourned the genetic condition diagnosis because I knew his life would never be "normal" and finding a spouse would be difficult and maybe no children for him, etc... When we got the mast cell issue diagnosed - it was a celebration because he was finally going to get "healthy". I can't imagine my life without Ike, but these last 3 years have been the hardest of my life, and the most challaging of our 14 year marriaggee
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