Sunday, May 9, 2010

Feeding Delay

Lexie is almost 16 months old. She has never eaten a Cheerio, puff, or cracker. She won't eat pasta or rice. If anything other than milk or pureed food enters her mouth, she cries hysterically and/or throws up. Sometimes she does that even with purees.

These are common problems for babies who were tube fed, as well as babies who have or have had reflux. We decided to get some professional help, in the form of an assessment from the state's Early Intervention program.

A team of two therapists and a social worker evaluated Lexie during a two-hour appointment. They documented her strengths (she's advanced in communication skills) and they noted their concerns. The first sentence read:
Alexandra has a diagnosis of prematurity, which may affect her development for many years.
I felt both validated and saddened by that sentence. I felt validated because, when I tell people about Lexie's challenges, they often like to say something to the effect of, "yeah, but full-term babies have those problems too." I don't understand the urge to minimize the effects of prematurity. Yes, full-term babies have problems too, but how is that relevant to little Lexie? Maybe it's a misguided attempt to make me feel better about the situation.

At the same time, it was hard to read that statement. I knew it was true, but seeing it in black and white made it seem very official. I'm still hoping that this is the extent of her issues (*hope hope hope*) and that she won't have any learning challenges when she gets to school. I don't like to think about that possibility, but I know we must be vigilant. Whatever happens, we'll get her the help she needs.

The therapists estimated that Lexie is at a 7-month level in the area of "self-help skills: feeding," which qualified her for speech therapy. (It's not for speech -- speech therapists actually work with all manner of oral disorders in babies, including feeding issues.) They also diagnosed low muscle tone, but she is doing the right things on her own to build up her strength, so no therapy will be required for those particular issues.

The assessment was a month ago, and we are still on the waiting list for a therapist. Wish us luck -- I'm really looking forward to seeing Lexie eat a cracker on her own some day.


dcpeg said...

Sorry to hear about Lexie's feeding problems. She seems smart and determined. With her superb family support system, she's sure to overcome any delays or challenges. P.S. Hope she's still interested in the piano - she's got the fingers for it!

MzMannerz said...

I can relate to the comments that are aimed at making you feel better, but end up simply stressing you out more. I suppose people don't know what to say.

I think the fact that her communication skills are advanced is awesome. Keep us posted on her progress and I hope you are able to graduate from the purees soon.

Brenna said...

I never would have guessed that speech therapy would be recommended for all issues oral--interesting! I'm so sorry Lexie (and her sweet mom and dad) is dealing with these challenges, but she does seem like a strong-willed, determined little one. I hope she can get over the hump soon and enjoy munching on the occasional rice puff or cheerio. And that folks can restrain themselves from feeling like they need to minimize her very real hurdles.

Cami said...

Praying for Lexie that God will help her grow out of these issues and that a therapist becomes available soon!

Looking forward to seeing you all in a couple weeks!

areyoukiddingme said...

I think the "Full-term babies have those problems too" statement is supposed to let you know that this may be a perfectly normal response rather than an effect of prematurity. I think everyone knows that preemies come with a whole host of what-ifs that full termers don't have, and taking one of those what-ifs away is supposed to ease your worries. It's not supposed to make you feel diminished. I'm sorry that it does.

I hope that Lexie can get a therapist soon - there's a whole world full of tasty things available to her, and I hate for her to miss even a moment!

Saffy said...

That's great news that Lexie's communication skills are doing so well :)

The feeding situation sounds frustrating and makes perfect sense. I really hope that you do see a therapist soon and that Lexie's eating everything under the sun before we know it!

caramama said...

I don't know why anyone would want to minimize the effects of prematurity! It is well documented, and must be SO tough to go through as a child and as a parent. At least you guys don't minimize it and will be there for her through whatever she goes through. Good luck with the therapist!

sara said...

I'm so sorry for all the bumps you guys have had to go seems like by now you should get some type of pass, huh? At least I think you deserve one. I wish I was in charge of handing them out - you'd be at the top of my list :-) Lexie is such a beautiful little girl - she is freakin lucky to have a dedicated kick butt mom like you. That is going to make her excel so much faster than we can dream. I know those words don't make everything all better...but know I think of you often and am here each step of the way ((hugs))

caitsmom said...

Wishing you luck for that day of Lexie eating a cracker!!!!

And I agree, it's not relevant or helpful or called for to minimize the challenges of others. Yes, all babies have challenges, and this is YOUR baby's challenge that you must work hard to meet. I suppose the intention was to help, but if it doesn't help--it doesn't.