Wednesday, March 17, 2010

still 25 lbs.....

So yesterday was another day at the hospital. We went for Kenny's comprehensive care appt. at the hospital...and oh was it a day! They didn't like the fact that he only gained 7 oz. in two weeks. I've been giving him 2 teaspoons of Duocal in EVERYTHING! He's up all night drinking pediasure with it in it as well! He is just not gaining enough weight for his height. They are now worried that is or will start burning muscle...which includes his heart. So there was tons of blood was taken from my little guy and we will see from that what we will be doing. She is also concerned with the fact that he is sick...pretty much...every week so she wants the immunologist to take a look at him also. I never in a million years thought that this would be so hard. I really didn't. You know...I'm supposed to be making my son better...and no matter what I do, I cant. He wont eat solids for us...he cant/wont drink more than 4-6 oz of pediasure at a time. To get him to eat his stage 3 baby foods...well...its a chore in itself. He will eat almost 1 jar per meal...if I am lucky, like I was the other day, he had 1 1/2 jars (woot woot). I am doing everything to try to help and it seems like I am not doing my job as a mommy! On top of unable to carry my twins to a safe point, losing Nick and not being able to do anything about it...this sucks. Its really testing me as a mommy...a person.
I asked the doctor if he could be getting sick all the time from the mold/rotted wood in the rafters of the basement and from the asbestos around the house...she kind of looked like a deer in headlights when I asked her that...and said...ummmm....yeah. OK...great! Now another thing to have to worry about. I am telling you...this is NOT the life I wanted or dreamed of. My kids and husband....Awesome! Yes, they are what I dreamed of. But everything else...this dark cloud that had been hanging over needs to go away, because I am trying my hardest to look on the bright side of everything...but its getting harder and harder. The constant worry of a special needs child...oh..God...its hard. Now I know I could have it much worse...I know that. Kenny could be blind, in a wheel chair, on a vent still...or even dead! He is here...he is a miracle! He brightens up any room he walks into. His smile is catchy. He doesn't know that anything is wrong...I guess I should learn from my son...I have to learn from him.
On another note, another police officer died in the line of duty....that makes 2 in 2 heart and prayers go out to everyone that knew him...knew both of these sad.
Ok...and finally...the lunch bags for the day...

1 comment:

Anonymous said...


Sorry this is such a long comment, but I didn't find an email address to send it too.

It's not a story about preemies, but it's my twin story.

My twins were born in August 07, I was on the ivillage PG board with you, and I've been following your blog on and off since. I was lucky enough to be induced at 38 weeks -- I was induced because the babies had stopped growing in utero for over 10 days, and had already been diagnosed with IUGR. Although they were full-term babies, they only weighted in at 4#10oz (girl) and 5#2oz (boy) at birth.

This past winter was terrible for our twin girl, with hospital stays and repeat lung problems (asthma, pneumonia, bronchitis, etc.) It's difficult to see them go through that. She has also been followed closely because of her weight. At 2½ yo, she also just reached the 25# mark on the scale. She's so tiny, but so is her twin brother, at 27#.

She's seen so many specialists (immunologists, blood specialists, geneticists, lung specialists, oncologists, etc.), she's had blood work done so many times.

And I too felt there was something I wasn't doing properly. But you know what? They didn't find anything "wrong" with her (except some anomalies in her lungs, but nothing they can explain). And I kept asking myself if it all would have been better if they hadn't pushed me to deliver two weeks early.

There are things you can change, and things you can't. And I think your family is doing a great job in making sure Kenny has all the care he needs. Focus on the recent accomplishments, and please stop doubting yourself, especially for something you had/have no control over.

I so hope you get to have the house makeover you're hoping for. Could the State Health Care or Housing department help you with your house's mold problem? I'm not from the US, so I'm not really sure how things work in your area...

It's great to see how Kenny has developed in your loving family.

Best wishes for a brighter future,

Marie aka renard333

PS: Kuddos to daddy for the lunch bags! He should definitely think about marketing the idea!!!