what it isn’t

We’ve spent the last few weeks toting sweet Shepherd to numerous appointments.

The gastroinerologist.

The endocrinologist.

And most unfortunately for Shep, the phlebotomist.


We’ve gotten all the results back from the testing that’s been completed so far.

And we still don’t know what *it* is.
(Shepherd came home in June 2008. His SN was clubfoot. His clubfoot was corrected and, therefore, is no longer a special need. What has become a special need is his low growth. He was recently diagnosed as “failure to thrive”)


We do know what it isn’t, though.

It isn’t his tyroid.

It isn’t HepB or HepC or HIV.

It isn’t his growth hormone levels.

It isn’t lead.

It isn’t celiac.

It isn’t cystic fibrosis.


We’ve got some additional testing still ahead: a barium swallow, a ‘feeding’ study, testing for possible Thalassemia trait or minor.

It’s tough some days not knowing what it is.


But for now, we’re celebrating what it isn’t.

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Comments

  1. Tara Anderson says:

    My son also experienced "failure to thrive". At his check-ups, he was so small that he wasn't even on the charts…below the 0 percentile. As I read your post, I remember going through so many of the same tests with him–and we never found out what it was. Gradually, his growth came up bit by bit and he's now (at 6 years old) hanging around the 15th percentile…which is a HUGE improvement, even though it's still on the small side. I feel your frustrations, and just want to encourage you to hang in there. You're absolutely right in celebrating what it ISN'T!

  2. Heather Thompson says:

    I'm preparing for our son's 3 y check-up next week and expecting to start investigating his lack of growth as well… We've had him home since January and he's still not on the charts- US or Chinese. Glad to see we're not the only ones. He eats well, he's just so tiny. fits in size 18 mo & 24 mo clothes. I like ur approach and will celebrate the positive! So glad he's turning 3 tomorrow home with us!!!

  3. mom2-4boys says:

    We have also experienced the same "failure to thrive". We saw a dietician at Children's Hospital in Boston. He has been tested for cystic fibrosis and celiac. Declan does suffer and has suffered since birth from severe food allergies (dairy, egg and peanut). He is 7-1/2 and just this past week hit the 40 lb mark…
    Other than that he is a pretty healthy bugger!!

    Good luck with all your testing. He sure looks healthy and happy…

  4. Thankful for what it isn't! You have a great perspective- celebrate the the good news!!

    He sure looks like a happy guy!!

  5. Anonymous says:

    We adopted our son at 3 yrs old – nearly 20 years ago! His birthmother is under 5', his birthfather is over 6'. He was small for so long – we did the growth hormone checks, bone tests -and they found nothing. As a toddler, he was in the same clothing for several years. If it helps – he did finally begin to grow. 8-9" in less than a year when he was 12! Then he didn't stop for awhile. Hopefully they'll keep finding nothing wrong with your little boy and any concerns you have will work themselves out. He is so precious!

  6. Coleman's A to Z says:

    I don't think I'd call it "failure to thrive" as much as just "failure to grow" because from this chair her appears to be thriving! :-) Hope all works out without intervention and you can continue to celebrate the what it's nots.

  7. oneparticularkitchen says:

    I can tell you that it IS near-unbearable levels of cuteness. That SMILE! He kills me. :) Hoping you have good news soon.

  8. Thinking about you, Stefanie and am celebrating what it isn't with ya!! Lizzie is still not on the American charts and hovering around the 3rd% on the Chinese charts. I agree with one of the other posters, it looks more like failure to grow because he looks sooooo healthy!!! Hang in there!

  9. Sally- That Girl! says:

    Maybe between the two of our sons we will figure something out for both of them!!!

    Keep posting updates, dying to know in California!

    Seems to be a common thread with some of our kids from China.

  10. The Ferrill's says:

    Sweet sweet Shepherd….we will pray for you little buddy! We have a certain little big girl who needs to grow…so we will put your name right beside hers, you precious dumpling, you!

  11. Daisy Dreams says:

    I'm curious how much Shepherd weighs (and how tall he is)? Just wondering what they consider "failure to thrive" from a measurement standpoint…..

  12. I hope you find some answers soon, but he certainly looks like he is thriving. What a sweet face. What a smile!

  13. Janet and Kevin says:

    Praising God for what it isn't!

    Our oldest son Ted never was on the charts until he reached fourth grade. Then he was only in the fifth percentile. I well remember how scared we were and how much we hated hearing he was labeled "failure to thrive" when we were doing everything in our power to help him thrive. Slowly, gradually over the years, Ted got stronger and stronger and started to grow.

    While he is still a relatively short guy, hovering around 5'2", he has filled out and is a little stocky now like my husband.

    We never did find out what "it" was that caused his abnormally slow growth, but we did know what it wasn't, and that gave us some comfort.

    Ted's cousins were always taller for their age, and so family gatherings were especially tough when we could compare him to them. He was so tiny and fragile looking for so long. Now when we look at him all healthy and strong, it seems like ages ago that we worried.

    Here's praying for your peace of mind as you all struggle to find out what might be causing his slow growth. And here's praying for Shepherd to grow healthy and strong.

    In Christ,
    Janet, Kevin, Ted, Philip, and soon to be bringing our Eli home
    http://threefingerprintsofgod.blogspot.com
    (Just in case you need to see someone who was once a failure to thrive little boy who is now healthy and strong)

  14. bbmomof2boys says:

    I was in China when you guys got Shep. In fact, we met at the WS clinic!!

    He was and still is such a cutie pie! I'm praying that you find out what *it* is soon. I know you are frustrated so I'm also lifing YOU up in my prayers.

    Hugs,
    Carla

  15. Anonymous says:

    Hang in there…it may be nothing. My sweet Grace has always been tiny. She is 8 years old and only 38 lbs. Very slow grower and gainer. She must have had small parents in Asia…not going to be a big person. Her younger sister Madeline age 6 weights 40 lbs. Baby sister Isabelle just three years old is now about 34 lbs…I think she might pass up both girls. She is growing soooooooo fast. Gained 8 lbs in just one year. Hang in there…hopefully it is just in the genes. Caroline

  16. You have the best outlook! I am inspired by you celebrating what it isn't instead of getting bogged down on what it is.
    Your sweet boy is on my list of kids to pray for and I look forward to the day when I can write the date this prayer was resolved in my journal!

  17. awwww shep is such a little cutie-pants when he smiles.

  18. a Tonggu Momma says:

    Celebrating along with y'all… my college roommate had CF. And so does one of our neighbors (whose sibling is also in the Tongginator's kindergarten class). And so I'm doing the snoopy dance that it isn't CF. The not knowing must be so hard most days though. I know it was difficult for us – scary – during the six months that we fought off that diagnosis.

  19. Anonymous says:

    Stefanie,

    Has he been tested for Vitamin D and zinc levels?

  20. Yes, he's been tested for both.
    Both are just fine :)

  21. I have a bio child who has had the failure to thrive diagnosis, and my daughter (adopted from Southern China) has skirted that diagnosis (the IA doc wanted it, our ped said no).

    My son, who is tiny, ended up having asthma, severe lactose intolerance, and bad enough reflux to need meds still at 7. He's had most of those tests you listed as well.

    My daugther, who is 3 years old (well 3 years 3 months), is maybe 25 pounds and 36 inches tall. She's finally growing again, but our pediatrician knew I was comfortable with feeding a child flirting with the "failure to thrive" diagnosis and was aware of how to make every bite count calorie wise.

    His thoughts now, for our children, are to look at overall development. A child, truly failing to thrive, will not play, learn, explore, etc. I wouldn't worry too much if he is developing normally in all areas but physical size.

    It's so hard though…

  22. believe it or not, these comments were incredibly encouraging as our boy is (& has been since we received his referral measurements) in the 3rd percentile. had some scary moments and a few tearful days along the way… but i think that he is just the perfect size that God intends him to be. i hope that somehow, as you struggle through the muck of trying to figure out how best to love, support and grow your children (& specifically Shepherd) that you too will feel encouraged. thank you for sharing.

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