It's been unusually warm and I've dressed him in short sleeved shirts and shorts and yesterday, it struck me how thin he has become. We call him chicken legs now because of his slender limbs very visible in summer outfits. It is heartbreaking.
These are his photos from about a year ago:
We used to call him Fat Boy, Little Buddha, Ball of Lard, Sumo, Buddha Belly. Just look at that double chin!
And now, here are his more recent photos (I picked the ones with his legs exposed):.jpg)
His head is still big, but his arms and legs are so skinny. And he could still fit in his 6-9 month size clothes.He's got a lot on his plate right now with his teeth and a break-out and a slight fever, but I'm hoping and praying his appetite will pick up when these things blow over. Otherwise, we will have to consider nasogastric tubes - something we will have to tackle with the GI doc in two weeks.
6 comments:
Hi Karen,
It's an excellent idea this blog. We have almost the same problem from 2005 with our son.
If you like we can share our experience.
Karen!
I know things are going to get better soon. We're all here for you if you need to talk :)
Hugs,
Erika
Karen, I can relate. I left a comment on the main blog, but I'm not sure if you saw it, so I thought I'd post a comment here.
My daughter, who's 3 1/2 years old now, has Netherton Syndrome and we had really severe failure to thrive issues with her as an infant - I used to be able to count how old she was by her weight (e.g. at 8 months she was 8lbs, and at 12 months she was 12lbs). We breastfed exclusively until she was 10 months old, and then we started trying other things to make her gain weight - MCT oil, concentrated formula (you need to watch their sodium levels when you concentrate, btw), rice cereal, supplemental regular-calorie formula after breastfeeding, etc. She refused to take a bottle, so most of the supplementation was from a syringe. We eventually decided to do the NG just purely because we ran out of options (put it in at night and took it out in the morning, because she constantly had Aquaphor on her face and the tape wouldn't hold). As nervous as I was to start the feeding (what if it went so far as a g-tube, what if she never weaned off, etc.), it did wonders for her weight. She started gaining immediately, and for awhile was gaining 2lbs/month. We weaned her off the NG to Pediasure via bottle and then later sippy cup around 2 years old (so she was on it for about a year), and once she started eating normally she's been great. We still have to supplement with Pediasure, and occasionally Scandishakes (8oz = 600 calories w/whole milk) but the last time she *lost* weight was before we started the NG tube feeding.
She did have an oral aversion because of the NG tube (late to try foods, so textures were scary to her); and she developed a speech delay because of a combination of the NG tube and she was just so far behind, period, because of her failure to thrive - but if I could do it again, I'd honestly have gotten the NG earlier. She eats normally now, and her speech has improved to where we "graduated" from her early intervention program.
If I can be of any help, please let me know - we lived in California when she was an infant, near Monterey, so I could suggest some docs up around that way (Dr. Williams at UCSF is amazing; and we saw a few dermatologists at Stanford who were beyond supportive and helpful - Amy Adams was one doc, but she has since moved on to Harvard).
Anyway, I felt like I could relate to your story, and I wanted to lend my experience.
Hi Cip, where can I reach you?
Hey Erika, thanks, that means a lot to me :)
Courtney, where can I reach you? Thank you so much for that long note, very helpful! I have so many questions about FTT, NGT and that high calorie shake. I hope you can tell how thrilled I am to be in touch with NS moms like you. I would very much like to swap stories: bogsmom@gmail.com
Karen, I think FTT is one of the most stressful parts of this disorder to deal with. When EmmaLee started actually losing weight no matter what we did, I was soooo worried about her! If she couldn't get enough nutrition how was she supposed to make it? Well, we tried all kinds of supplements from our GI doctor, but I was really scared to have them put in a G-tube. I refused at first, and we continued to try other options, but when it came right down to it, a g-tube is what she needed. When we finally got it over with, I started kicking myself for not allowing them to do it sooner. It was amazing the difference it made! And not just with gaining weight, although that certainly took away any worries, but she started developing mentally too! There was a huge growth spurt in her cognitive development and her gross motor skills started taking off. She didn't start crawling until she was 1 and walking until 2, but after that g-tube things really sped up, and speech took a huge step forward. I never considered an NG tube because it seemed we were too far behind for that, but maybe it would be a good step to help bambino and relieve your anxieties. I wish you the best of luck and hope this helps at all.
Love,
Anna Dawn
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