TriciaJoy - your latest blog entry

axh2277

I swear I could of written this myself!  I had a huge fight with my father this morning because he just doesn't get or accept that DS has feeding and weight issues.  Its gotten to the point that I don't even talk to him about it anymore and if I slip up (like I did this morning) I just end up feeling horrible and mad for the rest of the day because of his attitude.  Apparently at some point my father has become a leading pedi, pedi GI, dietician/nutritionist and allergist and claims that all we need to do is just feed him more and stop going to the doctors.  We spend our days trying to feed DS and like Robbie somedays are better than other but he just doesn't get this or chooses not to acknowledge it.  In my father's eyes DS has no feeding issues, in fact he says all the time that DS is huge - he's 16.5 months and 18 lb 4 ounces and not even on the growth charts, but in my dad's eyes he's huge!?!

Sorry - I just needed to vent to someone who would understand how I'm feeling

MWiley0225

I am there w/u. when my wonderful 2md son was born he was 27w5d and 2 lbs 8 oz. He didnt end up on the chart til he was 4-5 yrs old. then there was my 1st born 34wks and almost 6 lbs always big for his age even still at 7. So every kid is different and makes their own way through life. But even still everyone compares my two(12months apart) and always has something to say. Gl

TriciaJoy

People make me freaking insane.

FWIW, my husband and I have decided that when his mother comes and fixes Robbie, we're going to open up a feeding clinic out of our home. We figure we'll be rich. We know so many preemies (and other kids) with feeding issues, we can make thousands selling our "fixed in a week" cure.

For those unable to travel to us, we'll make a video and live on the royalties for years to come.

TheShellSeeker

I'm with all of you, too.  I've been told to just "wait an hour until he is more hungry and then he will eat better".  Yeah, right. 

TriciaJoy

TheShellSeeker:

I'm with all of you, too.  I've been told to just "wait an hour until he is more hungry and then he will eat better".  Yeah, right. 

Yeah. Uh huh. I purposely go 5 hours 1x/day so he is good and hungry. Some days he'll still eat 5 bites and refuse more.

 

I don't know why it's so hard to accept there is a medical issue at play here. If he had diabetes would they insist I just fed him too much candy?

 

lemen99

ugggh I'm so sorry  

lstaylor73

TriciaJoy:

People make me freaking insane.

FWIW, my husband and I have decided that when his mother comes and fixes Robbie, we're going to open up a feeding clinic out of our home. We figure we'll be rich. We know so many preemies (and other kids) with feeding issues, we can make thousands selling our "fixed in a week" cure.

For those unable to travel to us, we'll make a video and live on the royalties for years to come.

Hell Tricia, if she can do that for Robbie, I'll pay you ANYTHING YOU WANT to fix my boys.  Anything, just name your price.

TriciaJoy

Laura.. *LOL* Yeah. I'm thinking 10k for the weeklong cure. I think that's a steal. Think of all the money you'd save on copays for weight checks, therapy visits, hospital stays, surgeries? 10k is nothin', right?

 

preemieparent

I think part of the problem is that there are so many "social" issues around eating that people don't realize there are actual medical issues as well.  

They don't understand that eating doesn't actually come naturally.  It's a learned process and if there have been hurdles along that learning curve it results in huge problems.

In some ways the fact that Olivia doesn't swallow anything makes it a bit easier for people to "get it."   They can see her just keep the food in her mouth and have no idea what to do with it.   But we still get the comments about trying certain foods or letting her get hungry.

Bottom line. Some people are just stupid.

axh2277

Thanks ladies!  If I complain to my friends they wouldn't know what to say since none of them have kids with feeding issues.  Its just so fustrating because I would like to be able to talk to him about everything we're going thru and its just not an option.

Tricia I'll send DS to you for a week....I'll get my dad to pay!

axh2277

I forgot to add that as bad as this sounds I wish my dad was here today when Josh had a choking episode.  He's teething which makes eating even worse and he put a cheerio in his mouth and freaked out and before I could get it out he swallowed it and it got stuck in his throat.  I was frantically banging and rubbing on his back and it got to the point that I was about to tell DH to call 911 when he managed to get it dislodged and threw it up.  We did sweet potatos and yogurt for dinner and I signed us up for a CPR class.  We've had several choking episodes over the last year, but that one was by far the scariest...I was still shaking and sick to my stomach over two hours later.

TriciaJoy

axh, that's so scary!

our NICU required we take CPR before we could bring Robbie home, thankfully.

I know what you mean about wishing he was there, though. The last time my family was in town, we all went to dinner. I was giving Robbie a tube feeding while we ate. Everyone kept saying "want some of these mashed potatoes for him?" "Here, wants some of my carrots?" etc etc etc. I kept saying he was fine, no, he was alright. He was being fed, on and on.

Finally after the 4th or 5th comment I snapped 'HE'S FINE. HE IS BEING FED RIGHT NOW. IF YOU GIVE HIM FOOD AND HE GAGS HE WILL THROW UP."

Of course, the whole table stopped and stared at me uncomfortably, but crap, take no for an answer, will you?

Well, about 10 minutes later, Robbie promptly puked ALL over the place. I mean it was all over the table, in the floor, etc. They all freaked out and were trying to help. David and I just calmed him down and wiped it up. We're used to it.
Funny how no one said a thing to me after that and they all just wanted to go home. I guess my special needs kid is just too embarrassing for them. But at least they got to see that I'm not kidding about the puking.

I swear, they're all a$$holes.

lemen99

I think all NICU's should require CPR training!  (I wish all parents had it, not just preemie parents though!)