Wednesday, November 5, 2008

losing weight and clunky cars

Alex has been losing weight, he was once 27 pounds and is now 25. He has lost two pounds since June. The GI and pediatrician aren't too concerned, they thought he was getting too heavy in the first place. His nutritionist does not like weight loss in children no matter what. Alex poops every three days or so, he is not constipated, we think because he is losing weight he is barely getting enough nutrition there for, not needing to poop as much.
So my once thriving boy is slipping. Do we feed him more, chance reflux, and losing it all. Do I once again become a personal syringe holder, and spend my time putting food down him.
As of now we will continue to do what we are doing, if he loses again then our nutritionist will call the doctors and tell them she isn't happy, and we will see what they say. Funny, I am his mom, I can do whatever I want, but suddenly I don't know best. I don't make a move without someone telling me what to do and how to do it.

Alex's 3 teeth have broken through, but he is still congested which leads to coughing at night, leading to vomiting, leading to being awake most of the night......One month and counting.

I had a dream last night I was in a old clunky car, someone else was driving, and we had a long trip in front of us. We never could make it to our destination, we were moving, but the destination never got any closer.
This is what it is like to be the mommy to a special child. You have a long road ahead, but there is no end, it will always be a long road ahead. I don't think the car has to be old and clunky though.

10 comments:

Finding Normal said...

I'm the same way with the feeding. When you've always had someone telling you how many ounces to get in, it's tough to branch out and do your own thing. My favorite is when the doctors disagree about what is best. ugh
The car doesn't have to be clunky. The road will never end, but I think there are so many bright, sunshiney days that help get through the cloudy ones.

Cindy said...

I'm thinking "Lexus"! Do ever try to think of what you want to dream about before you go to sleep? It's never worked for me, but there has to be a first time for everything!

I don't know if this is too simplistic, but the way I fed Natalie by g-tube was basically the way I fed my other two kids by mouth: give them enough so that they're not hungry any more and don't force them to eat until they throw up. I know it's hard with the g-tube, because Alex can't tell you when he's full. But he can tell you when he's hungry, and you know him well enough to trust your instincts on what the right amount each day is for him to eat. We didn't have a nutritionist. When I asked the GI doctor how much to feed her, he said, "Whatever you're doing is fine."

I hope this is encouraging...I only mean it to be! And I want to empower you to make the decisions you want to make.

Hugs!

connie said...

Well, you KNOW I have no answers or wise advice, don't you?!

But there's something that rings true about waht Cindy wrote about not forcing them to eat till they throw up. That's how I have felt, sometimes, when I've tried to "push" so much toward the goal someone gave me, and all I see is vomiting. I know it's a fine line. Not enough fluids or nutrition, and you can have constipation; too much, you get vomiting/reflux. But I started thinking with Mal, if she is vomiting and miserable, some of it ended up being "excess," anyway, because I sure don't go back and try to estimate how much was lost in a vomit and stuff that much back in.

And there's something to be said for just believing the other thing Cindy wrote: you know him well enough to trust your instincts on what the right amount each day is for him to eat.

Something about having too many experts makes us doubt how much we actually do know. Somehow, I don't think you doubted yourself as much with your other boys, did you?

Recently Mallorie's pedi told me, "Continue doing what you are doing for now." I have taken that into my heart, and it's made me more confident about making some decisions by myself.

All I see is a vibrant, strong little boy full of personality and a desire to learn, when I see your pictures. I know he's sick now, so he may not "look" the part, but I bet he's getting more than enough to thrive on. No one says to put in a tube and top off the tummies of picky eaters if they are "typical."

And if I'm remembering correctly, my oldest 2 couldn't pass 24 lbs till after they were 3 yrs old.

Sallie said...

I've heard of many children losing weight when they become more active. I think Alex is definitely getting more active these days. I think you are wise to stay on top of it, but don't worry yourself to death.

Alicia Hart said...

Think of it as driving a rocking convertible along the coast of California--sun is shining, wind is in your hair and the scenery is beautiful. There are times that it rains and you put the top up and drive slower and more cautious. Then the sun comes back out and the top goes back down for awhile longer.

I'd have to say that I agree with the post earlier saying the more active a baby gets, they lose a few pounds. Butterballs are nice, but it makes for difficult moving! ;) Remember, he's still a child and is still going to do typical things!

Alicia

angie said...

A little crazy, but I always wanted someone to tell me what to feed Emma and how much...and no one ever would. After her transplant we had a nutritionist who was assigned to us, but we lived 10 hours away, and she just never helped much. Our pediatrician always said, "as long as she's not losing"...however, she only weighed 13 lbs. at a year and 18 lbs. at 2 years. I felt like my entire life revolved around her eating...it was so frustrating!! I really never ever thought that we would be where we are today. She will eat anything, and I don't even think about how many calories she is getting or how many ounces she has taken throughout the day. She's still little, but that's OK...or so they tell me??

That being said, Emma did lose once she started crawling (or maybe it was right before). She was awake more, and just moving around more in general. I hope this is the case with Alex.

I think as a Mama we take it very personally when our child has eating difficulties. That is OUR way to keep them alive and to make them flourish, and when things don't go according to plan it is very difficult for us. I remember we had a new case manager when Em was 2 1/2. She asked me what was the most important thing in my opinion that the entire team work with Emma on (she thought I would say communication). I said eating!! She looked at me like I was from Mars. I said, "If she doesn't eat she doesn't live".

I know that I am babbling and probably making no sense, but I just wanted to support you. You are such a fantastic Mom to Alex!

Lorelle said...

i've been following your blog for a little while now and just wanted to tell you how much i admire you and your strength. please dont forget that God doesnt give us anything that we can't handle.
Stay Strong and go love on those adorable boys!

Michelle said...

I wouldn't give a second thought to Aledx losing weight. It's not like he's rail thin. =) He's probably just growing taller quicker than he's putting on the pounds and add that in with his level of activity now and there ya go. I wouldn't worry too much about it. Give it some more time and see how he does. I usually go with what my pediatrician recommends.

Kelly said...

I really don't think we need to be in a clunker car...please re"dream" this. Like Cindy said...a Lexus please!

Go with yourinstincts on Alex. The month long sickness had to contribute to some of the weight loss.
Kelly

Anonymous said...

Jessica,

I haven't written for some time, but I've been following your blog from the beginning, and I just want to say that I so admire your strength and courage to greet each day with determined effort to make life wonderful for all your boys!
You are a wonderful mother!

Be blessed.