Troy update

jenarella · October 2011

Hi guys,

Some of you long-time Nesties may remember me and my 4 year old son Troy. We've been through the wringer, but he's continued to be the same super energetic, happy little boy that makes me laugh everyday. Short story - he vomited until he was 2.5 and doesn't eat well and after millions of tests and specialists, the drs thought it all stemmed from GERD (reflux) and then some thought partly related to sensory processing (which we worked on with an OT who released him last Fall).

However, he has always been less than 3 percentile for height and weight. Since he has not experienced the catch up growth that 90% of the kids born small do, he is considered small for gestational age (SGA). I have discovered an organization called the MAGIC Foundation (that I posted about). They explain that many of kids that haven't caught up share similar issues - the GERD, slow and small digestive tracts that make eating large amounts of food at any one time difficult, and as a result, feeding difficulties, and they also tend to take longer than others to recover from minor illnesses. Most have normal brain development (and in his case that seems to be true - his teachers even say that he is ahead in some things). Here is the description of SGA on MAGIC's website:

https://www.magicfoundation.org/www/docs/113/small-for-gestational-age

We, his parents, are also short adults, but at his age we were bigger than he is now. We have an endocrinologist watching his growth. At this point, we are in a watchful waiting stage.

However, many of the SGA kids need growth hormone therapy. Growth hormone affects every cell in the body, including the heart and other organs, which need it to grow just as much as anything else, so in many cases, it is not just about height. At this point we are working on his feeding issues, because getting in the right calories is important no matter what the future holds.

We have been working on his feeding issues with specialists since he was 1. We've avoided a feeding tube many times. We just recently started working on a behavioral approach at home to increase his variety - he still doesn't eat meat or vegetables consistently. This is similar to what an intensive feeding clinic would do, but we are able to work on this at home under the guidance of a behaviorist (who has previous experience at a feeding clinic) instead of moving for 2 months to go to a day treatment program.

If you can relate to any of the above, please don't feel alone - there are lots of resources available for reflux, feeding issues, sensory processing issues and/or SGA. Feel free to contact me at dcfeeding@hotmail.com.

And thanks for the support from everyone who's asked how he's doing and read the updates over the years.

vtkgirl77 · October 2011

Thanks for the update. I'm sorry to hear what a rough road he has had. It sounds like you are doing an amazing job trying to get him as many resources as possible while trying to avoid the more invasive interventions. I hope he continues to do okay. What a wonderful thing you are doing to reach out to other families too.

jenarella · October 2011

Thanks!!

doggylovr · October 2011

of course I remember you wedding date (6/11/05) twin right??:-) What a wonderful mom you are being....Thanks for the update and for everything you are doing for others who are going through similar things!!!

Sofka · October 2011

Thanks for the update, Jen. I know it's been a difficult journey and you and your DH are doing your very best!

pixieprincss · October 2011

Thank you for sharing. I have a friend who may end up with this DX when her DD turns 2 soon.

I am sorry that you are going through this. It sounds like have made yourself an amazing advocate for Troy.

LindseyJW · October 2011

it's so nice to hear from you and see an update on your little guy. i think about you guys from time to time so i'm glad you stopped by!

i admire your strength and wish you and your family all the best as you make your way through this challenge. troy is lucky to have such dedicated parents!

Hey Jellisy · October 2011

Thank you for sharing. I think of you and Troy on occasion and I am glad to hear that things are monitored and under control.

membrn · October 2011

Thanks so much for updating! I do remember your posts from before. I hope that additional answers or these added resources will help in his journey. You guys are really doing a wonderful job at making sure he has everything he needs. Praying for you all!

tracy042206 · October 2011

Thanks for the update, I remember that he was just a little older than Maggie. I can't imagine how hard these additional challenges are for you, DH and him.

NowDNAtoo · October 2011

Thanks for the update on Troy. I hope things continue to progress in a positive manner. I think of you often and every once in awhile your name comes up on sticky babies too.

Artslvr · October 2011

Hi Jen! Thanks so much for checking in!!!!!

jenarella · October 2011

So nice to see all the replies and hear such nice things from all of you - you guys have made me smile today!! Big Smile

I also love seeing all the pictures of your amazing kids!! I see some of the local Nesties for playdates and on FB, but miss hearing about the rest of you. Will try to pop in again soon.

doggylovr - yep, we're date twins!!

DNA - say hi to the Stickies for me!!

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