3

by Jo on June 20, 2012

3
That’s how many pounds he’s lost, according to the scale at the doctor’s office today.

There he is. All 49 lbs of him.

0
That’s how many pounds he can afford to lose before he fails to thrive. Again.

5
That’s how many times I cried today as I thought of those 3 pounds and how they managed to slip away while I wasn’t looking.

7,645
That’s the number of things I wanted to buy for him at the local Whole Foods, where I took him after our appointment, where I wandered aimlessly and thought about all of the meals I could make that he wouldn’t eat, where I stared at the meat counter and tried to figure out just how much organic, grass fed beef it would take to bring those 3 pounds back.

1
That’s the number of times I thought about crawling into a corner and staying there for a while.

7
That’s the number of times I felt guilty for not doing enough

2
That’s the number of times I was reminded that some folks have it much worse and that some good old fashioned gratitude is in order

I know I haven’t been here in a while.
I’ve been so busy over here and here instead.
And I’m sorry that my first post in a month is kind of a downer.
But if not here, then where? Where do I go when this sort of day happens?

I don’t know what we’re going to do about Andrew.
The G-tube has been looming over us ever since his Cystic Fibrosis diagnosis two years ago. I’m trying to avoid it. Some folks swear by it, but for now, for US, it’s a last resort.

But I have GOT to get some weight on this child.
Thoughts?
Ideas?
Prayers?

Yes please.

{ 20 comments… read them below or add one }

Michelle June 20, 2012 at 5:50 am

Of all the numbers listed above, I am so happy that crawling into a corner and staying there only got a 1. Stay strong Jo.

Have you tried protein powder shakes? Maybe he would like something sweet with fruit?

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michele June 20, 2012 at 7:27 am

Jo,
I am sorry you had to write this. Unfortunately, it hits so close to home for me. We are where you and Andrew are last year…. we tried everything. Right before the “serious g-tube talk” we tried periactin which is an appetite stimulant….. NOt sure if it was that, or just a spontaneous change, but he did start eating and gained back the 20 pounds his little 10 year old body had lost.
Now, for several months, we are slipping back. Nothing seem to help and the neuro is very concerned, and the GI is nearly there again at the g-tube talk….. Although he absolutely hates cold things…I gave him some of my green smoothie with berries a few days ago…much coaxing, and a few episodes of SpongeBob later…he had taken all his morning meds and managed to choke down the smoothie without too much gagging. I jumped for joy and seriously cried because he had just had more than he had taken in days…. He had managed to take one each morning since. I am not sure if it will last…but I am grateful for every sip he takes.
Also, his grandma made some pureed soups….some of which he also actually took in.
He seems to do better with blended things right now…and I have a blender I am not afraid to use! Maybe Andrew would like these things too???
OR maybe the two boys could have some “lunch dates”…. Gavin always does better in a social situation with food or drink…. Hang in there.
Michele

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Jo June 20, 2012 at 6:30 pm

Wow Michele – ten pounds? I’m so sorry you all went through that. It’s hard to see our kids wither away instead of thrive! I would love a lunch date with you and the boys. We could have a picnic at the park! Blending stuff is a great idea. I also bought some organic bone broth at the farmer’s market in Irvine last Tuesday and have been secretly using it to fill his rice and other foods with extra nutrients. We do what we can, right? Still, it never feels like I’m doing quite enough……

Thanks and big hugs to you all!

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Michelle D. June 20, 2012 at 12:35 pm

Prayers always…

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Jo June 20, 2012 at 6:31 pm

Thank you Michelle. I so appreciate that!

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terry June 20, 2012 at 2:41 pm

Dear Jo, I’m no expert on your situation, so please forgive if I say something you’ve already tried a gazillion times. how about some good ol’ fashioned Stoffer’s macaroni and cheese? Thick, creamy, lots of carbs. It’s our comfort food of choice. How about using more olive oil in your cooking? Lots of good calories there. I even use it on the pan to cook scrambled eggs. Gives them great flavor. Does Andrew like avocados? I gain weight just looking at them. xoxoxo You are an amazing woman. seriously.

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Jo June 20, 2012 at 6:28 pm

Terry –
He’s not a huge mac and cheese fan but he does enjoy buttered noodles once in a while. I do use olive oil as well as organic coconut oil in my cooking. Just bought some avocados the other day, too. Obviously great minds think alike, ha! And thanks for the compliment. I really appreciate your help and kindness!

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Sandy June 20, 2012 at 2:43 pm

I don’t know if you have tried some of the high protein shakes but
I used coconut milk, almond milk, full fat yogurt, bananas, nuts, peanut butter, nut butters, honey, fruit and anything with a high caloric content to add to the protein powder and made shakes.
What is Andrew’s favorite food?

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Jo June 20, 2012 at 6:27 pm

Hi Sandy -
Those are all excellent suggestions, thank you! Andrew loves fruit, which is great, but not very fattening, haha! I tried a new peach salad recipe yesterday with basil, honey and goat cheese (which he actually likes) and he took to it. The goat cheese made it fattier and added some protein. I think I’m just going to have to go into major experimentation mode!

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Horsegaljk June 20, 2012 at 3:51 pm

Dear Jo,
BIG HUGS!!! I am so sorry to hear that you are in this place. Unfortunately, I also know that dark corner that you currently find yourself in… and I can ‘feel’ every word you wrote. Oh how I wish sheer willpower were all that was required here, but it’s not.

I have come to know (and admire) you through the autism world, as my youngest son, who will be 4 yrs old next week, was diagnosed with autism last year and now epilepsy a few weeks ago. However, I know FTT from a very long journey with my oldest NT son, who will be 14 on Sat. The cliff notes version of the story goes like this: FTT at ~1 yr, struggled with reflux, nursed until 2 1/2 because it was the only ‘food’ I KNEW I could get in him, cried through bathtime trying not to acknowledge that my beautiful boy looked more like a skeleton with skin draped loosely over him, there were nasty letters from family members that were certain I was a terrible mother and if I would just feed him correctly (the right foods at the right scheduled times of day, etc.) that my son would be fine and avoid all these medical issues that my ineptness was causing in his life (insert hours spent in dark corner crying here), Fundoplication surgery at 18 months old (closing top of stomach; didn’t seem to make to much difference but could get off the reflux meds), Pyloroplasty surgery at 2 yrs old (opening of the bottom of the stomach to encourage stomach emptying and hopefully appetite; it didn’t); G-tube at 2 1/2 yrs old…. and lived with it for 9 1/2 years. My son ate as much as I could get in him during the day and then we ran the G-tube pump at night while he slept with 2 – 5+ cans of Pediasure per day, based on his need at that point. Our goal was to remove it by middle school so it wouldn’t be an issue when changing for PE in the locker room. We were blessed to accomplish this goal and able to remove it the Fall of 6th Grade, so by the time Middle School rolled around the following year the scars were minimal.

Here’s the important part: I’d do it again in a heartbeat!! The G-tube did 2 things for us… 1) It made sure my son got the calories and nutrition he needed to continue to be healthy and grow until he had progressed enough to take over the responsibility; and most importantly… 2) It took the power away from food and let me enjoy my child and my child enjoy his mom. :) We spent SO much of our day basically fighting about food. I wanted him to eat and he wanted to avoid it. It was controlling our lives and preventing us from just ‘being ‘ together and enjoying life like a family should. It’s still a struggle for my son to gain weight today and we weigh him at least once a month (used to be weekly), but at 14 yrs old, he can now set his watch for snack and meal times so he doesn’t forget to eat and we have agreed upon snacks and meal choices so they aren’t empty calories. My hope is that God will use this life struggle that my son has endured and that he will be a deeper and more compassionate person because of it.

Anyway I know your situation is different, but hopefully just knowing that you are not alone in your feelings and this hourly struggle is helpful for you. You have great instincts, Jo, and no one knows your child better than you so trust your Mommy-gut when making the decision on whether the G-tube is right for your son and your family. If I can help in anyway, please don’t hesitate to contact me. Take care and know that you and your family are in my prayers.

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Jo June 20, 2012 at 6:00 pm

Oh Janet, you are so incredibly kind and thoughtful to share your own story, which sounds triumphant to say the least. I know I need to keep my options open and if the g-tube ends up being the only way to go, then we’ll dive right in. I love that your son thrived and the idea of just being able to hang out with Andrew without worrying about his eating and trying to figure out a way to shove another bite of something sounds divine! Your comment is such a wonderful example of a mother going to any lengths to help her child and I am so grateful that you stopped by and chose to give me a different perspective! I’m sorry about your youngest’s epilepsy diagnosis; is he being treated with anti-seizures? Andrew was diagnosed with autism at the age of 2 (he’s ten now) and a few short weeks later the seizures began. If you ever need any information or just someone to vent to, you know where I am! Hugs, and thanks again!

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Horsegaljk June 21, 2012 at 9:50 pm

Hi Jo – Yes, my little guy is now 2 weeks into a 6 week dosage ramp-up on Lamictal. Epilepsy was a realm I was REALLY hoping we weren’t going to need to learn about… autism is overwhelming enough!! Earlier this week I was FREAKING OUT because I thought he was developing the dreaded toxic rash due to the medication. Thankfully it looks like it was just a coincidence and probably just heat rash (PS – I hate rashes… they are so subjective!!) I definitely may hit you up on that advice/venting offer at some point. Thank you and take care. :)

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Rox June 20, 2012 at 4:52 pm

I won’t pretend to know what you’re going through, but I can tell you that when it comes to our children, there’s pretty much no way to get around the guilt that we somehow managed to cause this, or failed to prevent it. All my kid has is a cold, and I’m pretty sure I cried once or twice at the thought that I’m the one who gave it to him, and how terrible I am that I left my germs hanging around his precious little person. So I guess what I’m saying is it’s OK to feel guilty because you’re a mom. But at the end of the day, you need to know that you are not to blame. You do your best and then you do even better, I see it and hear it and read about it every day, so I know that’s true. Continue being the amazing mother that you are. Also, wouldn’t it be awesome if we could give him 5-10 of OUR spare poundage?? :) Hugs.

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Jo June 20, 2012 at 5:56 pm

Thank you friend. And I know you are right. We all can relate to those guilty feelings. I too have considered giving him a few of my own “extra” lbs, but not quite sure how to do it yet. I’ll let you know once i figure it out. *wink*

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Melissa June 20, 2012 at 10:44 pm

I suspect you may have already considered this. But whey protein may be a good option for you. I know many parents with kids on the spectrum use it for nutrition.

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KWombles June 21, 2012 at 1:17 pm

((())) Thinking of you and Andrew and hoping you can encourage him into eating more. If he’s a picky eater–or dissinterested in eating, tie it to an incentive–something he’d really like to have and reward him for eating.

Hope he gains those three pounds back soon!

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Fiona June 22, 2012 at 10:26 pm

I have a 12 year old with autism – global learnings delays (diagnosed at 3) and Cystic Fibrosis (diagnosed at 5). My 12 year old is not much heavier than your 10 year old. We are in UK so slightly differnet system here but we have a fabulous CF team. Do you use Maxijul ?. My lo can spot an additive or sniff it out a mile off but we add Maxijul to his drinks , to his food where we can and get about 400 – 500 extra calories a day into his diet with this. For us a Gastrostomy is not really an option as it would be pulled out and cause untold distress, Perhaps if it had been done when he was youger he would have coped but not at his present age with the level of distress he can show.
There are several of us in the UK who have children on the spectrum and cystic fibrosis and we all face different problems, some with Iv’s, some with tolerance of specific meds, pills etc. So far Maxijul has worked for several of our kids as it really is tastless.

My heart goes out to you. different continent – same problem.

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Loren July 17, 2012 at 6:26 pm

Hi Jo,

Just read this post (almost a month after you put it up), and I think you are perhaps down the road even a little more toward the G-tube? So perhaps this is too late/not helpful, but I do a lot about caloric smoothies (as you know my little guy could use some extra weight, too), and I know a yahoo group that is very helpful. If you are interested in more info about this, I’m happy to help!

-Loren
-Loren

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Kit July 26, 2012 at 8:15 pm

I only found out about your blog after reading your absolutely fantastic piece at the OC Register.

But. All my sympathies. Seriously.

I’m an autistic adult who was diagnosed with cystic fibrosis at birth. Spent years underweight, with constant warnings about the impending need for a G- or NG-tube. I know how much it sucks when being texture-sensitive suddenly matters so much more, because having a restricted diet doesn’t work well when you can’t absorb nutrients properly to begin with.

I ended up being prescribed an appetite stimulant used for breast cancer patients called Megestrol. It helped a lot. I don’t take it now; my metabolism shifted and some of my texture sensitivities lessened once I hit adolescence. I *wish* I had advice on non-medication-based solutions, but my family never figured out any!

Best of luck.

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Jo August 3, 2012 at 1:45 am

Thank you so much Kit, for your comment. I will def. take your advice into consideration. I’ve been keeping a daily food journal for Andrew, and for the last two weeks, his eating has been phenomenal. If he still doesn’t put on any weight, then they’ll have to retest his absorption again. They say it’s normal now, but you know, I have a tendency to mistrust anyone in a white lab coat lately….

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