Thursday, June 11, 2009

Does that work for you?

A question I was asked yesterday by Alex's nutritionist.

Whom I love , just so you know.

The question got me thinking though, and so here I sit, venting, letting it all out to you.

I was excited for his eating speech therapist, and the nutritionist to see how well he was eating his textures.

I opened the door, welcomed them in, and with her knowledge filled eyes she asked about the bumps on his arms. I had noticed, but I have bumps on my arms, so does Noah, in fact 1 in two people have them, its hereditary, so it made sense to me that more than one of my children would also have bumpy arms. She also noticed that he had a snotty nose, I answered yes its been a few days. Has he been getting lots of milk products I was asked, actually yes, since adding the textures the milk has increased. He probably is allergic, lets cut out all dairy, and see if his bumps and snotty nose go away. Again, I want you to know I love our nutritionist, she has really, really helped us along the way!!!!

Then comes the weigh in, the height, and the head measuring. Alex lost 9oz!!!

Since adding the texture, he has been down quite a bit with the puree food, usually taking 2oz of pureed food per meal, now only one, along with texture. So she says we are also going to increase his volume per feeding, not much just 10cc per feeding totaling an ounce a day. Does that work for you?

This is what she asked me. Does that work for you.

Well no, I thought, none of this does, the tube feeding, the weigh in's, the therapy, the doctor appointments, the surgeries, this doesn't work for me. I didn't know I had a choice, if I say this doesn't work for me, do I get a easier option????? No milk allergy? No tube feedings? Maybe they could have asked me that in the NICU, or right after he was born. Does this work for you? No, thanks, could I have another scenario please.

So my answer was no, this doesn't work for me, but it has to, he cant lose weight, he needs to grow, he shouldn't have dairy if he is allergic, but no, this doesn't work for me. But I have to make it work, like I have since the day he was born. Things get relaxed, feel good, become routine, and then BOOM a change, I hate it, it makes me want to cry, sometimes it makes me want to quit, it doesn't work for me, but like I said in this post, I have to go on, that's what we moms do, it doesn't work for us, but we still have to twist it, and turn it, and make it our new normal, and get used to, and prepare for the next change. Not because we are so strong, or amazing, or better at it than the next mom, we HAVE TO.

But to answer the question, no this doesn't work for me at all.


Anonymous said...

Ask your nutritionist if it would be OK for him to try GOAT'S milk / products for a bit.. some kids are allergic to cow's milk/dairy.. but do OK w/ goat..

of course, try this after the bumps & running nose is gone.. out of his system

The VW's said...

Yeah, It doesn't really work for me either! But, I'll keep doing it, because like you said, I have to!

I'm sorry about this new bump in the road Jessica! Praying that it gets better again soon! HUGS!!!

Hannah said...

I don't know what having a child like Alex is like, but I DO know what having a child with a severe dairy allergy is like. Let me know if you have any questions I might be able to answer (after you speak with your nutritionist, of course).

Tamara said...

Oh I sorry Jess. Do ya think he might be loosing because he has been so much more active? These things never come at times when we are ready. I hope and pray things get better with the no milk thing.

Following Him said...

Does not work for me either...@ least he is eating and trying! I agree with anon and after cow's milk, I would try goat's/rice milk. If he truly has an allergy, you should see a difference.

Lacey said...

that is so true. I'm so sick of hearing how do you do it. Because I have to, what else can I do?

Michelle said...

I had to laugh out loud when I read the line "no thank, could I have another scenario please". I'll have to remember that one! I would have loved to hear her response to that answer!

Cindy said...

So sorry you have the milk question now too...hopefully IF he is allergic, it's something he can grow out of.

You didn't say how recently he was weighed to have lost 9 oz since the last time. 9 oz is 1/2 pound...about the size of a good poop! So the difference could be whether he pooped before the two weigh ins or not... Just my 2 cents...I think since he's doing so well, frequent weigh ins are not helpful...they just stress you out. And like Tamara said, he's been more active, so he could stay the same for a while, and if he's allergic, he's probably not gaining because of that.

Hugs! It doesn't work for any of us, but we do it because no one else will do it as well as we can, and our kids DESPERATELY need us to.

Michelle said...

I'm sorry sister....all I can say, it sucks. I agree with you, I wish we had a different scenario. Sending you a hug!

Finding Normal said...

Doesn't work for me either. Our (notice she's OUR therapist, not just Addison's) speech therapist told me this morning that I have so much I could teach other parents. I told her I really don't. It's called I make it up as I go along. I'm not doing anything magical or fabulous. Hell, most days I'm just trying to keep my head above water.

Chris and Emily said...

Oh - how I hear you!!!! I'm so sorry that you had that discouraging news. Hang in there!!!!!!! You are doing a great job. Praying for you!

Colleen said...

I know how hard it is to go through the twists and turns while trying to add some normalcy and sanity. Some people think us parents of special kids have superpowers or something, but we really don't...we just have to do what we have to do!

tm in oh said...

I like Cindy's comment ... a good poop is 9 oz. OR next time weigh him wearing extra layers of clothes! Such stress over his weight, and it is true that he is more active AND that causes weight loss. :) Hang in there --- you'll be able to write a book with all the knowledge you're getting! love ya! ! ! and once his milk allergy is under control that may help, too. You aren't superhuman ~ just have what you need when you need it -- and we are there for you!

angie said... it is REALLY not working for me either...I'd like option B please:).

Hang in there're doing awesome even if it's not the option you would have chosen:). I hope that it's not an allergy (they stink..we have eggs, nuts, and shellfish), but it will also become your new normal (that you didn't order) pretty quickly if it needs to be:).

Hugs to you! (and Alex of course)

Kelly said...

Love your honesty Jessica! Your posts are so true and I can totally relate. Soon you will have a break from tube feedings, food allergies, and therapies. As hard as it is to say it, we will probably miss it! What did they put him on for his milk allergy?

Kelly F

Cathy said...

I love to come to your blog, you are truly honest and so transparent. Praying for you. someday our plate just overflows. It just runs all over the place and I don't want to even clean the mess! Other days things go so well, I think whose life is this???

Alicia said...

Wow, once again, you've done a beautiful job summing up this special needs life we have found ourselves in. Of course it doesn't work for us, none of it does. But we make it work because we have to.