Tuesday, April 18, 2006

Where to go from here?

So now we've gotten to the point where y'all are reading, but we're not posting! I'll just jump in and make a post.

It's been busy, busy in the Casa de Moms. Holidays, Early Intervention appointments, etc.

Our Cutie-Patootie is going to be 1 year old soon. It's craziness. She's been on a huge growth spurt lately - the girl's all legs!- and we had to sort through the 12-18 month clothes. Much of it is still slightly too big, but a lot of the 9-12 month pants are too short. Whatcha gonna do?

She was very premature, but for her adjusted age, she's above average for height. And near the bottom of the chart for weight. This is due, I'm pretty sure, not only to her probable genetic body type (which I'm pretty sure will be tall and thin), but to her feeding issues. And these are related, we're pretty sure, to sensory integration problems.

When we first got the Little Booger, she was 6 months old (chronologically) and eating 2 oz of high calorie formula (with rice cereal) every few hours. (3-4, I think?) She would spit up a lot of it, though, so who knows how much she was actually digesting. We took her off the rice cereal (it was waaay too early for her sensitive digestive system) and put her on a goat milk formula. Her reflux seemed to improve. She was still taking about 2oz every 3 hours. After a month or 2, she was up to 3-4 oz and we were thinking we'd have to start using the bigger bottles, cuz she'd start taking 5oz at a time. Wishful thinking. She hit an eating lull, then got a cold, and now she eats between 15-20oz/day. She's growing and gaining, but it still feels like too little. She's probably around 15.5 pounds, so she should be averaging 30oz.
Really, the main problem is that she often seems very hungry, but then stops after 1-2 oz. And then she's hungry again very shortly.

The other main weirdness we found with her was sleeping. It took her forEVER to fall asleep when we first got her. She'd fall asleep, then her arm would flail and she'd wake herself up. Or we'd get her totally asleep and she'd wake up the second we moved her to her hammock. We FINALLY though of swaddling her and that first night was bliss! She still took forever to get to sleep, but the transition to the hammock was smoother and she stayed asleep for longer. But now, at 11 months old, she still has to sleep swaddled with a light blanket over her face. Total sensory deprevation, or else her eyes pop right open and she's AWAKE.
At this point, she's to the point where we can get her to fall asleep in 5-10 minutes, no problem (usually). She'll nap anywhere from 45minutes - 3 hours (with a daily minimum of 3 hours of naps), and she gets tired after 2-2.5 hours of being awake. She sleeps around 12 hours/night and we put her to bed between 8 and 8:30pm. However, she usually fusses after 45 minutes or so for another bottle (because she drinks so little while she's awake), and then she gets 2 bottles overnight. Besides the bottles, she fusses for her binky at least twice a night and usually many more. She never sleeps for more than 2 hours at a time between fusses. It's exhausting.

She's also very high needs. For the first few months, she wouldn't nap for more than 20 minutes unless she was in the sling, cuddled up against one of us. We couldn't put her down for more than 5 minutes until she was big enough for the exersaucer - about 2 months ago. Now she'll stay in there for 10 minutes at a time. But if we leave her line of sight, watch out! She just wants to be on our laps all the time. Or playing on the floor with us. Occasionally, I can get 15 minutes alone if I put her in the crib (she sleeps in a hammock, so the crib is for playing), turn on the mobile, and give her a bunch of toys. But as soon as she can pull herself up on the side of the crib and reach the mobile, I'm thinking that'll be over. We'll see.

This is long-winded, but what I'm getting to is that, many months ago, an online friend mentioned that the things we were describing about Her Fussiness sounded like "sensory integration disorder" of some type. Bingo.

When we went to the developmental pediatricians, they said that sensory integration wasn't something they could evaluate and wasn't something that you could get early intervention for. Fortunately, at her last appointment with them, they referred her to EI...because she's not yet rolling over. Yay for that!

The Early Intervention rep TOTALLY understood the sensory stuff and even brought it up herself when we were talking about the baby's issues. We got the evaluation and the area for which she qualifies for service is "Adaptive Skills" - e.g., self soothing and sleeping. They recommended she get services from an Occupational Therapist trained in Sensory Integration. Yay!
and, sure, they'll work on her gross motor delays and get her rolling and crawling like a champ, but really the most important thing in my opinion, is to teach her those self-soothing techniques.

Her Royal Cuteness, however, would like for them to teach her how to walk, please! She has increased tone, which causes stiffness and the flailing that kept her awake, but also gives her muscles of steel. She has been standing with assistance since before we got her, and is now able to stand holding onto something (the couch, for instance) all by herself. She is learning how to "cruise" a little bit, too. Unfortunately, she can't sit down and get back up, so if she wavers, she falls and she doesn't like that one bit. We're pretty sure that, once she learns to crawl and stand up/sit down, that she'll get working on that walking thing. And then we're in BIG trouble!

We were supposed to get a call about the OT by yesterday, and we didn't, so we'll be following up on that. Hopefully she can start the therapy by next week. She'll be getting it twice a week and we're hoping that we click with the OT person. We know the baby will love whoever it is. She makes friends wherever she goes and if someone wants to play with her and give her their full attention - she's all for it!


R said...

Thanks for the update I have been checking in daily. Sounds like shes got some great mommmies who are advocating for her! This is the age group we will be fostering(ring phone, ring) so I have a lot to learn, from you it seems! Thanks for being here, and keep it up!

Julie said...

I have a foster baby who sounds quite similar to yours- she has her first appointment for an evaluation with the motor skills therapist on Tuesday and I am very excited to see what they will say- she isn't rolling over yet- but i think she is almost ready- she also eats 6 times a day- and we are working up to 4 ounces of 24 calories trying to bulk her up- your post is encouraging!! Thanks!