Tuesday, July 27, 2010

growing jonah

Jonah is still refusing to eat, but the nutritionist came today and said he's growing great. He's gained a pound and a few ounces since last month and has grown 2.5 cm, I think she said.

He's in the 45th percentile for height, 50th percentile for weight (WHAT???!!!), and his weight to height ratio is in the 75th percentile.

So as frustrating and maddening as long g-tube feeds are, they are obviously working. I would rather deal with the frustration I'm feeling now than deal with the constant fear I felt before we had the g-tube... when I literally had to force milk down his throat (just for him to puke it right back up).

I know y'all have a lot of questions about what I have and haven't tried, and why I can't do this or that. I don't really have a good way to answer them since they're scattered throughout the comments. I'm up for suggestions, though, if you've been here before. Thanks for letting me know what's worked for you. Anything is worth a shot!


Kellye said...

I can't offer any suggestions, I'm afraid, but I can pray...we're continuing to lift you all up in prayer.

Cathy said...

I've been thinking about your post since yesterday.

Is there any reason he *needs* formula in his blends? I'm asking because the volume/texture/speed tolerance for my son went way up when I cut his formula out. And the blended diet I put together for him covered all his nutrients, so formula was literally just liquid calories, and I put him on milk instead.

Also, is he on Periactin? It can help with hunger, which is what most people use it for, but it can also help the stomach relax and accomodate tube feedings better.

I'm glad he's growing at least! I hope it gets easier for you soon.

Anonymous said...

Congrats on doing exactly what Jonah needs to grow! Obviously, what you are doing, though hard, is working!! Well done!

I think I understood from your last post that the reason that you cannot pump/backpack Jonah is that his blenderized food is a pudding-like consistency and it won't work with the pump? Is that right?

I have a hard time getting a rich formula through some days let alone something pudding-like so I can only imagine your frustration.

I wish I had suggestions for you...we are still struggling with g-tube feeds (we are about a week behind you guys in how long Cor has had his) and it has NOT been the miracle that every medical professional promised me that it would be. We get our mic-key on the 16th of August though so I cannot wait to see if things improve once we lose his tummy "tail"

Thinking of you as you struggle with these issues.

Stay strong!


Luci1 said...

I've meant to email you this simple suggestion just for a bit of peace of mind. I don't know why it took me 4 babies to figure this out, but I finally bought a nice scale, like at my ped's office. This is what I have and it's $43. http://www.amazon.com/Salter-Electronic-Baby-Toddler-Scale/dp/B00009KX5U

Also I used to work in Early Intervention so wanted to recommend the Marcus Ctr. Knew a child who had psychological issues w/eating- no physiological issues and really turned around here: http://www.marcus.org/default.aspx?id=37

Hope that helps,

Luci1 said...

2nd attempt to comment

1st suggestion- buy a scale like the peds. use. It's $48 here- love mine. http://www.amazon.com/Salter-Electronic-Baby-Toddler-Scale/dp/B00009KX5U

Also used to work in early intervention. Famil I knew loved this group for their son's psychological eating issues. http://www.marcus.org/default.aspx?id=37

HTH and hope this less-polite attempt goes through! ;-)

Ryan and Lori Jones said...

Hi! I dont know you, but stumbled across your blog while I was looking at others. My child belongs to the foundation for blind children.....most of the children there have feeding issues. They introduced us to a organization called POPSICLE. Two mothers started this organization because of their childrens severe feeding issues. You should check out their website and even contact the two founders of this group. They are amazing and Im sure will have alot to share with you and be able to understand what you are going through. The website is http://popsiclecenter.org Good Luck!

Wendy said...

Wow, those are some great stats! My Chris who's tube was removed a month ago sits at the 3rd percentile for weight (hey, he's on the chart) and 50th for height. I'd be ecstatic with the results your getting with your feeds :) And I applaud the care and time you have taken to make a blenderized diet for him, I know how much thought and work goes into that. I think you are an amazing family :)

Emily said...

I've worked as a behavior analyst, and over the years several of my clients with autism have had eating issues. Well, actually, they'd refuse to eat. There isn't any one magic trick that worked with any of them, unfortunately. But I can tell you that I've seen many kids improve and learn to eat more willingly. One of the biggest changes I saw took place with a little boy who was 5 years old. He had been failure to thrive as an infant and struggled with eating his entire life. I have literally held him down while his mom shoved food in his throat. He doesn't have a g-tube.. it's ugly. He also has blood sugar issues and starts hitting, yelling, and throwing things when he's over hungry. HIs mom has cleaned more applesauce off the walls.. you get the point. I tried for a few years with behavior based interventions, but the more we "tried" the more the kid resisted. Eventually, the mom learned about Son-Rise and switched therapies. In her new approach she would simply leave food available, if he went towards it, she'd praise him, if he touched it, she'd praise him, and so on. He didn't have to eat it, he didn't even have to look at it. She put everything on his terms, and fairly quickly he started eating. Now, I know you have more physical restraints, and you can't simply leave food all over the floor. But what worked for this family was giving up the battle. They gave their son control over his eating, and he started making the choices that they wanted, but in his own time.
Maybe that story will help you..

In the meantime, give yourself some credit for being an amazing mom. You've kept this kiddo growing and thriving despite some very difficult obstacles!!

Marie said...

My biggest piece of advice is: STOP TRYING. You have the g-tube, so you don't need to force feed him. Just stop offering food, but let him see you and Matt eating. It's become a control issue for him, so simply stop the battle. After a period of time, put some food nearby but don't directly offer it to him. He will have the control whether to reach for it or not. My CF kid Ella was exactly the same. Food was a control issue for her, and she refused to eat simply because she knew the adults wanted her to. If I said she didn't have to eat, she would immediately ask for a hamburger. Jonah is smart, he knows it's important to you and since he lacks control in so many areas of his life he's controlling the one thing he can. Let him have the control, let him choose when to eat.

Sarah M. said...

I 100% agree with Marie. It sounds like this is about the only thing in his little life he can control and he's going to control the heck out of it.

Have y'all looked into SOS style feeding therapy? It is very gentle and helps the child feel in control while still teaching them how to eat. We're doing that style of feeding therapy, have been for about 18 months. In that time frame my daughter has gone from eating nothing to eating about 75% of her daily caloric needs by mouth. It has worked really, really well for us. We go for one hour a day one day a week.

Re: the formula - has the GI tried putting him on anything besides Pediasure? On one of my email groups Pediasure is referred to as Pediavomit. ;) I might ask to do a trial of Peptamin Jr or something similar or maybe even something elemental like Neocate or Elecare to see if he can keep that down. Your GI office should be able to give you samples of a variety of formulas. If they did, you could then possibly do some feeds on the go - get a Zevex Infinity pump and the mini backpack and if the straps don't irritate his skin, he might even be able to wear it. If not, it at least is really easy to port around. Even if you just did one feed as formula, that would be one feed you aren't trapped in a high chair for, which gives you a lot more freedom, at least...

The Macons said...

Yay he is gaining weight!! That is what's important!

Bloss said...

Hi Patrice,
I have been reading your blog and praying for you guys for about a year now. I have never commented, but just felt compelled to let you know how amazingly gracious I think you are!

I know people mean well and I assume that you have picked up some great tips from blog readers, but to be so open invites a flood of advice and opinions, and I think that's brave!

You and Matt are doing an amazing job with Jonah and I cannot imagine how frustrating these things must be for you, so I just wanted to know that I think you are amazing to be able to be so real, so gracious and so loving in such a public arena.

Praying for you and your sweet family.
PS. I share an aversion to the Fresh Beat Band but my boys LOVE it. It makes me wonder where I went wrong ;)

Laura A said...

Nothing to suggest here - but offering prayers and whatever other support I can give you! Hope it's been a better day - and YAY JONAH for growing!! :)

Please give that sweet boy a hug!


The Simmons Family said...

Patrice... Jonah's stats are fantastic! Keep doing what you're doing. I don't have a ton of suggestions. Owen doesn't eat a whole lot orally on a daily basis, but I keep offering it. It's stress free. He LOVES the social aspect of eating. He gets the same food we do at every meal and he loves to imitate us with his knife and fork and he drinks when we do. They all figure it out. At least, I hope so!

As far as the tube feeds and the puking... argh. I stopped using the pump because I felt Owen was on a leash all day or restrained.. I hated that. He's on oxygen, so another tube was making me crazy! That's why I started just using the syringes... which is what you're already doing.

I wish I could do a bolus feed. My life would be much simpler. I just set the timer for every 30 minutes and inject 2 oz over 30 seconds. Then he can play and when the timer beeps I do it again. He's pretty free.. not stuck in a high chair or strapped to a pump with a backpack.

It's not the perfect solution but it works for us. You will find what works out. I know it! You are doing a great job. Jonah is lucky to have a momma like you!!

Becky said...


just saw this story on our local news and thought I would share

Jennifer said...

I lift you guys in prayer. I will ask have you tried just giving Jonah eating issue ALL to the LORD and just don't concern yourself over it anymore. It seems to be consuming your life at times. God does not test us but he does want us to trust him and leave all our worries at the Cross. He hears our cries. I'm not telling you something you don't know but GOD might be waiting for you to fully give it to him.

We as parents , especially us moms want quick fixes to our children problems(I have a Downs baby) but I have found out having 4 children there isn't ANY, BUT when I hand it all to the LORD, release the bondage of Satan, it works it self out in the end and HE fixes it..in HIS time!!

He want ALL of us!


Anonymous said...

Yay for improvement! I pray for Jonah and Tripp specifically. I talk to my mom about Jonah constantly! I also wanted to tell you that DEBRA is a choice on ebay for donating a portion of an auction to a charity. I was browsing them and saw that. Maybe you could encourage your readers. to give 10% for a whole month or something!

Tracy said...

His stats are great! My 3.5 son was a micropreemie and just got on the charts last year! Even now he's like 10% for height and 20% for weight.

Erika said...

That's good to hear that he's still growing well. Still, I can only imagine how frustrating this is for you. We'll keep praying... ((HUGS))

Joy H said...

((((hugs)))) Patrice, you are AMAZING. I know the feeding tube anxiety --- my 8yo had a brain tumor and after surgery had to learn to walk, eat/swallow, talk ALL OVER AGAIN. She had a feeding (ng first, then g-tube) and figuring out the amt. of calories (she lost a ton of weight post-op); hydration; and rate to avoid vomiting was insane! The nurse didn't even believe me and would try 'faster' feedings and she would puke, ugh.

I'm sure Jonah can sense your stress about the feeding stuff. I know you are giving him special toys during his feedings; what about letting him 'play' with some foods to check out textures --banana, avocado, yogurt? I'm not sure that would work with his bandages, but I'm trying to offer a random suggestion.


tammy said...

Patrice, I've been following Jonah for a long time. He is an amazing boy. I ran across this article today and thought you might interested. http://www.ksl.com/?nid=148&sid=1163953&hl=11. It is about a young man with EB. Tammy

Trwaldo1 said...

Long time follower, commented once or twice...I work at a place called My Precious Kid (www.mypreciouskid.com)
Anyway, we carry a soft "highchair" called "My Little Seat" (Item #08-204-B) it has a 5 point harness and can travel with you, is made out of cloth and you use your normal chair...I thought maybe you could try that...just a thought. Blessings, Tracey

Frances Barber said...

Patrice, so happy that you got some encouraging news from the nutritionist! You are doing an amazing job with Jonah! I'm praying for y'all. I know it's so difficult for you, especially with the hot weather preventing you from taking Jonah outside - hopefully we'll soon have a "cool spell!" God bless you!