Can't catch a break
 

I just wanted to rant and complain for a moment.

My son who is almost 2yo is having it tough. How do so many bad things happen to the same kid?

1. Had to fight TTTS.

2. Lost his identical twin to a hospital f-up.

3. Has moderate to sever hearing loss. (will be getting bilateral hearing aids)

4. Has a heart murmur that we found out yesterday the hospital new about and never told us. He will be getting an echocardiogram on Monday. They are rushing it because he has to be put to sleep for a hearing test, and they want to make sure he can handle it.

I am sorry for this rant, I know it really does not amount to a hill of crap compared to what some endure, but it still ticks me off.

Peppy, I couldn't imagine dealing with all that as a kid or a parent. I have been lucky with three kids. My thoughts and prayers for your family.

If you have never seen it, sit down and watch the movie Gattaca.

It's all about a "less than perfect" guy who had been told his whole life he would amount to nothing because of his genetics.

Sometimes, people who have to overcome great difficulty overcompensate by trouncing what seems to insurmountable obstacles to others.

Sorry to hear this kind of news. The funny thing about kids is that they seem to be so resilient. How is your son handling these issues? That's what I would concentrate on. I hope he's a happy almost-two-year old. :)

I just got back from getting a cast put on my 4-year old daughter's broken arm. Poor kids...

Peppy, I am so thankful that my kids are healthy because I'm not sure I could deal with the stuff that your family has endured.:(

It sounds like you are a strong family.

Good thoughts to you and yours, my friend.

Hopefully all of the recent advances in hearing restoration will benefit your son. Best wishes to you guys.

My son is happy. It is me that has the problem with the issues.

You are correct kids are resilient, my son is the toughest person I know.

Yes the advances are pretty amazing. I just know how mean people are and kids with hearing aids get picked on.

Peppy - sorry to hear about your boy.

I am no doctor so I don't want to give bad advice, but my son has a mild heart murmur and he's 13. It has never had any affect on his life. The only treatment is a course of antibiotics before he has any dental work/cleaning.

So my understanding is that there is little to worry about.

He too, was two, when the doctor first told us he had the heart murmur...

hang tough Peppy...
as for the hearing aids (I wear them) if I don't want to hear you..
I don't. :D

Rika

Thanks Rika, I needed a laugh.

Sorry for the bad luck Peppy. In adversity you can find strength, never forget that. Best to you and your family, I know you've had a rough go of things.

Peppy, I have been through that and then some with a now 11yo son of my own. Had many a day when I was at the brink. I learned to tell myself it is my son who is living with these issues, not me. Feeling bad myself does no good. When I'd hear people say how worried they were or how upset I would convey the same message.
Medical tehcnology is not perfect, but it is simply amazing. They're not always a friendly bunch, but in the end simply amazing. Stay stron, support your son and take one day at a time.

Hang tough for you and your son Peppy! Makes my problems seem insignificant in comparison.

Peppy - keep focused on the fact that your son is happy. that'll carry you through each day. I had (have?) a heart murmur from birth. Never slowed me down. I actually had a concaved chest for most of my life (had "elective" surgery about 15 years ago). I found, growing up that everyone I grew up w/ just looked at me as, just Josh. It wasn't until I moved to a new school that kids teased me. But I had 12 years of being "just Josh," that I didn't give a rat's a** what anyone else thought. Plus kicking their a** up and down the field in gym shut most of them up pretty quickly. As someone who was born w/ what I guess would be classified as a birth defect (I never looked at it like that), the best advise I can give you is to treat him just like any other kid. You may find he has some limits, but don't tell him what they are - let him find out on his own. You and he, will both be much happier for it.

Cheers

Went to Duke yesterday and had the same Dr. that did my wife's fetal echocardiogram. He was able to spend some time with us and explain everything.

I am glad to report that there are no holes or other problems with the heart, and the murmur is nothing to worry about.

I guess he got a break.:D

Yep Cochlear implants have come a LONG way. My wife is a deaf Ed teacher and one of her good college buddies just got one who was a music major. She had gone to bed hearing and woke up deaf, Now it's the other way around.

Where are they doing the implant? UNC?

+1

Tim my son is only getting the hearing aids for now. I think the Cochlear implants are for total deafness. My son hears about have of the range of spoken sounds.

Yes, he is going to UNC for his hearing.

AHH boomers, at least he won't be sticking his head to fridge anytime soon then/ :p They do the implants for people over a certain db loss, but it's not just total deafness. According to my wife it's about 70db of hearing loss before you're considered for implants as an adult, and 60-80 for children depending on where on the scale it is. Steff also says that UNC is the best in the state for aids/implants.

Good for you to get him aids early. The earlier a kid gets his hearing the better he does in school and languages, it really does make a huge difference.

Hang in there, it'll get better and he's in good hands.