Normal Baby Stuff

Tomorrow is her physical therapy evaluation, so today I'm going to focus on all the "big girl" normal baby stuff she's accomplishing.

Her crawling is really coming along. I mean, she can crawl, but I'm not going to call her a crawler until she's up on all fours following me into another room (or leaving me to go into another room!). She seems to understand some words, and occasionally tries to communicate back. She finds it very frustrating that she can't pronounce the word she wants to say. She's gone to a restaurant twice now, and sit in a high chair both times. She was very well-behaved. I was so proud. I'm still proud! Maybe it's just maturity but it's still nice to see how well-behaved she is. She's been very cool about strolling along in her big girl stroller even tho she still seems to small for it. Usually giving her a sippy cup of juice works wonders. She can mostly sit up unassisted by herself, but the minute she gets bored or distracted she falls back over so I'm not saying she sits unassisted. She is doing really well with standing. Sometimes it's difficult to determine if she will walk first or crawl first. She didn't panic at the Easter Bunny like we thought she would, which was a pleasant surprise. She still has some separation anxiety, so she didn't play as well with the group of babies at the picnic as some others did but she did get relaxed and at least sit with me on the ground with them. She can feed herself and use either sippy cup (one with handles and one without). We're still working in "big girl" food, like grapes and pieces of beef or chicken. She's not really a fan yet, but we're working on it. So she has some stuff still left to master, but plenty of other things under her belt.

A Special Child

Stole this from another mom's page who has a special child

A Special Child
You weren’t like other children,
And God was well aware,
You’d need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven’t been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We’re proud that we’ve been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who’s taught us many things,
But most of all- “Real Love”

Hearing test (ABR)

Well, it wasn't pretty but the end totally justified the means. Ellie was up every two hours last night, so I was exhausted but evidently she felt great all day and anything but tired. We got to the hospital and checked in, everything went fine. Of course they call us back literally two seconds after I get her to fall asleep. Ellie didn't want to be weighed and kept lifting her head up to sit up, which then caused her to "Bonk" it back down on the scale. The nurse gave up, I told her Ellie's weight from Thursday. They tried to get her blood pressure but it never works. They also forget to get her temperature after I had mentioned she had a low grade fever the night before (99.9) for which I gave her tylenol. The worst part was of course holding Ellie down to get the IV for her sedative (propophol). First they had to hold her arm and shine a light under it to find the vein, which Ellie adamantly opposed. Then, because she was so upset, they had to swaddle her and hold her down to get the IV in. After that it was ok but there were way too many tears and high-pitched screams for this momma. They got her sedated- which is not something you actually want to see... she was so limp and lifeless. It was just so horrifying. We were shown out and walked to the cafeteria for some sandwiches and sodas. We came back, ate and waited. The test was about 45 minutes. Ellie "hooted" every time she could while waking up. She was very smiley though, and that made my heart feel better. She had the red dots from the electordes but they faded as the day went on. The best part, of course, were the results. Ellie's hearing is considered "essentially normal," as the audiologist called it. She was only slightly off on high pitches in the right ear. The cut off was 20 and she needed it to be 25 in order to hear it. The audiologist also mentioned her ear canals are very, very small (duh) and they happened to be dirty (how do you clean microscopic infant ear canals- with ear tubes in them?) so there is a slight likelihood her hearing is even better than we think, although for all intents and purposes its nearly perfect as it is!

On a related side note, this means the ear tugging is 100% teething. The test would not have been able to have been performed if she had an infection or fluid in the ear. So it can only be dirt and/or teething that is causing the ear tugging. Now, we just need those stupid teeth to come in! This also likely explains the strange eating and sleeping pattern she's developed.

The GI Dr

HOORAY!!! 12 lba, 9 ozs. The GI dr was a fantastic appointment! According to Dr. Seth Marcus' records, Ellie gained 2 lbs and grew 2 inches since December. She seemed 100% fine to him. According to the chart he had on her she had stayed on the same curve. He thinks perhaps the nutritionist was comparing Ellie to a normal baby growth curve, which is horribly inaccurate. So the pedi and the Gi doctor both agree Ellie is doing great. Only the nutritionist seems to have other ideas. So she's outvoted lol. In any event, Dr Marcus also gave us the go-ahead to add some butter to her veggies and some heavy whipping cream to her fruits. Yum! He also said we should check back in 2 months. He did say he was going to see if he could find a more accurate chart by which to measure her, but the growth curve he had was steady. SO HOORAY! Good news all around. :-)

Also on the positive side of things, we are expecting a tooth to pop through any day now. The last few days Ellie has been cranky and extremely clingy. No high fever, only 99-99.4. No big drool. She wouldn't take her fingers out of her mouth but what else is new. Last night she was inconsoleable so in a last ditch effort to contain the screaming I put baby orajel on her. 180 degree turn around. Entirely different baby. Happy, laughing, playing in her exersaucer, went right to bed without incident.

I also called the pedi anyway since her 10 days of amox was up and she had no change. His idea? Might be allergies. Isn't that what I said two weeks ago? Ah well, to be continued, as always!

Time to eat Crow

I stand corrected, and I will honor the correction. It could be a fluke but Ellie's food intake has really skyrocketed. We've alternated between solids and bottles and it seems like she's eating more than usual. Hubby even said he felt like she must be having a growth spurt. Her sleeping arrangements are all off, she screams at random, etc. Could also be teething or her cold. She has too much going on at once to really narrow down what's truly going on. I measured her and it seems she's add 2 inches to her length from what I could get from her. Its hard to measure an 8 month old! I'm interested to see how this all shakes out in the end. Do solids really work for a reason I haven't deciphered yet? Is she really teething? Is it really a cold? All this and more... stay tuned!

just venting

Maybe I'll even get some answers. Today I had a "talk" with the nutritionist on our feeding team who proceeded to tell me Ellie is malnourished (although she said not from lack of trying on my part). Ellie has been 24" long for months now, with no linear growth and she's about 2 pounds away from her goal weight. The nutritionist also said it was time to add back in solids. I don't know why because (1) they detract from her heavier caloried food and (2) she can eat solids, they aren't the problem. She has mastered that developmental milestone. In fact, today she crawled a bit, maybe an inch or so. If they want her to fatten up why are we cutting out the fattening food? I'm also upset that she asked if the pediatrician mentioned anything and I said, no he was perfectly content with her growth. Which means someone's wrong. Either pedi has no idea what he's talking about or the feeding team is really over-shooting her goals. I did the math and to me it seems her weight is fine, for her. In either event, they want me to make a follow up appointment with the GI Dr. I call him the feeding tube doctor. I can't imagine they'd want to stick a feeding tube in her at this point, post-op, but who knows anymore. Clearly not I. And it gets so much better- the nutritionist said if it wasn't malnourishment that was causing her stunted growth (yep, she used those words) than it was likely to be something else and we would need to see an endochrine doctor. Fantastic. Just what I need- another doctor in the Ellie soup. It just breaks my heart. Like she doesn't have enough problems, we have to keep adding to them. And of course my stupid behind thought surely post-op everything would be fine! She'd gain weight! She'd grow! I guess I just put too much hope on one operation. I feel like its too much. I dont want to play the "I have a special needs baby" game anymore. She's such a happy baby with no idea what's going on and that almost makes it worse for me.

Rock and ROLL

On St. Patrick's Day, Ellie woke up and decided she wanted to roll EVERYWHERE. Under the futon, under the coffee table, inbetween the speakers and the tv. I'm really proud my daughter has decided to be mobile. She gets frustrated she can't crawl yet; she rolls on to her stomach, screams, then drops her head to the floor and cries. Still, this is the first step towards crawling so she may not skip it afterall.

I mentioned this to our pediatrician. (By the way, Ellie was 12 lbs 1.5 ozs on March 18) I said that her physical therapy evaluation is next month and that she does not sit unassisted to the point where I trust her just yet. He said not to worry, he doesn't expect babies to sit up on their own until AFTER they become mobile, because thats how they build up muscles. He also said he doesn't expect to her to become mobile (crawling) until at least 9 months at the earliest. And finally he said not to worry about the evaluation because she's only "at-risk" and there is no actual problem at this stage.