September 2, 2006
Well, in just a few days, it seems everything has changed. For one thing, Anastasia lost the 2 oz. she'd gained. For another, I took her off Reglan.
It wasn't clear whether or not the Reglan was helping Anastasia's reflux, but it was clear it wasn't helping her eating situation. While last week she ate beautifully, this week her eating really declined. (The opposite of what should have happened if the Reglan was doing it's job.)
Too, Anastasia was constantly tired and grumpy. She startled easily. She stared into space. She wasn't acting like herself at all.
To top it off, a little research into Reglan showed that adults taking the medication for reflux are encouraged to use it only for 12 days in a row, or neurological side effects may occur (such as jerky movements). Since Reglan isn't FDA approved for babies (many reflux drugs aren't), there were no guidelines for little ones. Worse still, in rare instances the neurological side effects are permanent.
Plenty of reasons to take her off the drug.
I told my husband last night that in my gut I feel there will be no magic bullet for Anastasia's eating woes. I feel this just as I felt she would not need eye surgery or a G-tube when she first came home.
I really think Anastasia simply isn't all that interested in food, and gets bored with it very quickly. For example, when I first gave her Pediasure, she acted like it was the best food ever invented, and gulped it down. Now, she's much less enthusiastic. The same goes for Cheetos. At first, she loved them and would eat several at a sitting. Now I have a hard time getting one down her. And now that she's used to the little pink feeding cup, she will almost never drink from it...but the infant cup is still novel, and after refusing Pediasure from the pink cup, she'll usually drink the same stuff from the infant cup.
I try to offer Anastasia lots of different foods at a meal, and this helps some. Once she refuses to eat any more pancakes, for example, I can often offer her several tablespoons of yogurt.
Unfortunately, I think we're just going to have to live with this ultra-picky eating. (This is not to say we won't continue to explore treating her reflux in the hopes it will help her eating habits, however.)
Anastasia continues to be stubborn about sitting, too. I have to plop her down and walk away now, or she'll just fall back into my arms to lay down. On her own though, she commonly sits for five to 10 minutes.
Yesterday, as added incentive to sit, we put our cat in front of her. She immediately started "petting" him...er, trying to twist his ear off. Our cat is so good natured, he only cowered a little bit, and occasionally acted like he enjoyed it. Since I'm trying to teach Anastasia to pet him gently, I had to hide the tears of laughter running down my face...
September 5 (part II)
Good news! Today Anastasia weighed in at 16 lbs. 13 oz.! Oh, the ups and downs we go through over a few ounces, eh? It must be tough for people with babies who eat well to understand...
When I spoke with the feeding clinic folks today, I explained why I thought most of Anastasia's eating issues were what I'd call behavioral (i.e., she wants variety in cups and in food, and if she gets that, she eats better), but also said I was of course interested in exploring her reflux issues, too. With that in mind, the doctor wants to up Anastasia's dose of Prilosec. Apparently, for her weight, she's on a low dose. I'll start doubling her dose today.
I also asked about Prevacid, saying I'd read it's the reflux drug of choice for babies. "Do you agree?" I asked. He said it's very similar to Prilosec, but that he'd be happy to see if it worked better for Anastasia. He was concerned it might not be covered by our insurance, but I explained that her Prilosec isn't covered, either, since it must be specially compounded for Anastasia and none of our approved pharmacies do compounding. So, as soon as I run out of Prilosec (which will be within days), I'll start giving Anastasia Prevacid, instead. Happily, I can get it at our local pharmacy, since it comes in pill form.
Overall, I'm feeling much better about Anastasia's eating. Meal times are a lot less stressful, she's doing better with solids (eating more of them, and gagging and vomiting less), and she has gained ounces. Yea!
September 8, 2006
There's not much news just now, except to say Anastasia is a sitting fool right now. She loves it! Now if I can just convince her that being mobile (walking, crawling, creeping, rolling to get places...) is fun :)
September 10, 2006
I started Anastasia on Prevacid two days ago. So far, it seems to work at least as well as Prilosec. This is great because the Prilosec had to be specially compounded for Anastasia...which our insurance wouldn't pay for. But the Prevacid is 100% covered by insurance. It's a little different to give, since I have to dissolve a tablet in water first, then measure out the correct dosage (throwing away anything that's left over), but it's not a big deal. And Anastasia takes it like a pro.
September 11, 2006
Anastasia has developed an interest in how things work. She frequently fiddles with the buckles on her high chair; I think she's trying to figure out how to unlatch the clasps. And now she's learned to use her jack-in-the-box. But she doesn't turn the hand crank. I've tried to teach her to do that, and she shows little interest. Instead, she just pushes on the latch that releases the Jack. It's much faster!
September 12, 2006
I'm pleased to report that Anastasia is still gaining weight. At yesterday's weigh-in she was 16 lbs. 15 oz...A surprise to me, since I didn't think she'd been eating all that well. But I'm not complaining!
Yesterday Anastasia also had a physical therapy session. She cried the whole time and then went stiff, so the PT wasn't able to work too much with her - but she did show me some specific and new exercises to do at home. Mostly, the PT wants me to work on getting Anastasia mobile in any way. Right now, what's holding her back from getting in or out of a sitting position on her own is that she doesn't like to bear weight on her arms. Obviously, this prevents her from crawling, too. So, it's my job to trick her into bearing weight on her arms as much as possible. We talked about the fact that Anastasia may be one of those babies who never crawls (and just goes directly to walking), but the PT stressed that Anastasia needs to build up those arm and shoulder muscles, anyway.
September 14, 2006
We've had a crazy week, what with physical therapy and visits from the county nurse and our Early Intervention coordinator. The county nurse hadn't seen Anastasia in a number of months, and was thoroughly delighted with her progress. She confessed that she'd originally thought Anastasia would be a cerebral palsy baby with lots of medical woes. "But look at her now!" she said. "And she's so cute and pretty, too!" Anastasia gave her a final wow by waving goodbye when I asked her to.
We are still trying to get Anastasia's new prescription ironed out. It turns out it's impossible to give an accurate dosage the way the pharmacy told me to do it (i.e. by dissolving it in water, then measuring out the dosage...The tablet doesn't mix with water; all the granules sit at the bottom of the mixer, so I either end up giving her too much medication or too little). I'm walking down to the pharmacy today to ask if I can cut the pill in half, dissolve it, and give her the resulting dose.
And oh yeah. Yesterday, Anastasia finally hit the 17 lb. mark!
And now, Anastasia with her mouse ears:
The dress and ears are very special; the grandparents bought them while they were visiting Disneyland with their other grandkids...which is of course when I went into labor. They bought the clothes and hat on faith that God would let this little baby (who few thought would survive) live and bless our lives for many years to come.
September 15, 2006
Our pharmacist said it's probably be okay to cut Anastasia's Prevacid tablet in half, although it might loose some of it's time-released effectiveness. Tablets designed to dissolve in your mouth (as this form of Prevacid is) aren't supposed to be chewed, ground, or cut up. Still, he thought it unlikely that cutting the pill in half would make too much of a difference.
I've already started giving the medicine to her this way, and hope it will work well. Last night, she refluxed repeatedly after her midnight meal, and finally vomited. She hasn't done this since early spring; clearly, going a week without the proper dose of meds has made her condition worse. And it's kind of scary, too, because she doesn't turn her head to the side. She keeps her face toward the ceiling, which is a good way to aspirate your vomit.
We've also been talking (again) about moving her into the nursery at night, but I never would have known she'd thrown up if she'd been in there...even with the baby monitor on.
September 18, 2006
Anastasia has a third tooth! I kept looking for new ones on top, but it's on the bottom, right next to her old ones.
Anastasia's also attempting to assert her will more often. For example, yesterday I wanted to give her some Tylenol for teething pain, but she stuck her lower lip out and turned her head away sharply. "You need to take your medicine," I told her. And she shook her head "no." Ah yes, toddlerhood is on the way! (I gave her the Tylenol, anyway.)
And in anticipation of a mobile Anastasia, yesterday we bought two child gates. What a pain they are, but very necessary to keep our curious girl away from our wood stove. Now if she would just crawl...or roll...or walk...or something!
September 18 (part II)
Things I keep forgetting to post:
1. Anastasia's no longer eating baby food (with the exception of prunes and applesauce...Regular applesauce is too tart for her). I gave away all her baby oatmeal, barley, etc., and she's now eating regular adult oatmeal.
2. At Anastasia's last physical therapy appointment, as I cuddled and comforted our girl after her workout, the PT grabbed a Mickey Mouse doll to show us how to do some new exercises with Anastasia. Seeing this, Anastasia's lower lip came out and soon she was crying. Either she was upset the PT was suggesting new exercises for her, or she was feeling sympathy for Mickey :) Hubby and I couldn't help but laugh.
September 19, 2006
Yesterday, Anastasia had her first real play date. The baby (I'll call her Miss E.) is about a half a month behind Anastasia's corrected age, so the matching couldn't have been more ideal. Anastasia had a wonderful time watching her crawl all over the place. (At one point, Miss E. even tried to crawl over Anastasia.)
Miss E. was very interested in the hand crank on Anastasia's jack-in-the-box - something Anastasia has never been keen on. After Miss E. played with it, Anastasia spent several minutes studying it herself. They did this sort of thing with a lot of Anastasia's toys.
Anastasia was pretty smitten. She played with Miss E.'s feet, held her hand, and pet her hair. It was really adorable.
After an hour passed and Miss E. started rubbing her eyes and crying a little, Anastasia just sat and studied her closely as her mommy picked her up and loved on her.
What a great experience for Anastasia!
September 20, 2006
The March of Dimes has done a great deal for the cause of prematurity. Their funding made artificial lung surfactant possible...a medical miracle that has saved the lives of countless babies - including Anastasia's. They continue to fund research into prematurity, and work hard at educating the public about what causes prematurity and how it can be prevented.
In a continuing effort to raise awareness about prematurity, The March of Dimes is currently trying to get Google to highlight Prematurity Awareness Day on their wildly-popular search engine. Please take a moment to sign their petition: http://www.marchofdimes.com/forms/signPetition.asp
September 22, 2006
I haven't written about Anastasia's supposed ataxia in a while, but hubby and I are 99% sure she doesn't have it. We base this on what I've read about ataxia - and also on our physical therapist's own description of Anastasia's "symptoms." I've explained to the PT that these symptoms only appear during physical therapy sessions, when Anastasia is highly stressed. Since explaining this, the PT has backed down a bit, and last time we saw her she said, "The ataxia is really resolving itself."
We've also discussed the supposed ataxia with several other medical professionals. The county nurse (who is not a PT, but is trained to spot things - like ataxia - that might affect child development) couldn't see ataxia in Anastasia at all. And during an exam at the feeding clinic, the developmental pediatrician told us he didn't see any evidence of ataxia in Anastasia. Later, in a written report, he said: "My examination was difficult because of [Anastasia's] crying, but reviewing her activities with [the PT], we think that she may end up having some degree of ataxia, but I do not feel strongly that we should consider this diagnosis at this time." (Emphasis mine.)
The only ataxia symptom our PT has mentioned that I can somewhat agree with is that Anastasia wants to mostly stay still. She doesn't seem to want to crawl, or roll across the room, or walk. On the other hand, however, she loves to bounce, be swung in the air, and use her baby swing...things our PT indicates kids with ataxia wouldn't like.
In the meantime, Anastasia's reflux is causing her troubles. She's not vomiting, but is coughing and refluxing visibly. She's eating less and is clearly uncomfortable (especially late in the evening, and in the mornings before I give her the Prevacid). I called the feeding clinic to report this, and asked if a larger dosage might be in order. (I know several babies smaller than Anastasia who are on higher doses of Prevacid...The problems is, every doctor seems to have his or her own opinion about correct dosage in babies under a year old.)
Basically, the folks at the clinic said, "Let's wait and see." I'm not sure what we're waiting for, since I'd think the effectiveness of the perscription would have kicked in by now. I'm frustrated by their response and am almost ready to refill Anastasia's old Prilosec perscription. It was expensive, but when the dosage is right, it works. We go in for physical therapy (and a weight and measure) this Monday, so I hope to discuss her perscription further at that time.
September 23, 2006
Yesterday, Anastasia weighed 3 oz. lighter than she did only four days ago...and those were hard-won ounces! She has another tooth about to pop up, too, so between that and her reflux, I don't expect her eating to get much better.
September 26, 2006
We had physical therapy yesterday. We started out with a weigh and measure, which Anastasia cried big tears through. She doesn't do this at home, so my guess is she associates getting weighed at the doctor's office with getting painful RSV shots. Happily, Anastasia is still on her growth curve, and is in about the 50% percentile on the preemie chart.
I also got a chance to talk with our usual nurse. She explained that the pediatrician at the clinic didn't want to increase Anastasia's reflux medication just yet because he wondered if her coughing might be due to irritation from reflux before we changed prescriptions. (He felt her perscription was too low, the last time he saw her.) This makes sense to me, and I'm feeling less frustrated on that count. By next week, if she's still coughing and refluxing, I gather he'll be willing to increase her dosage.
Then we had physical therapy. Anastasia cried a lot, but not as much as usual. It was apparent to me that the PT was taking a more laid-back approach, and at the end of the session she talked a lot about why she felt Anastasia has ataxia. (I almost wonder if she'd read this website, and knew how much I felt the diagnosis was wrong.) She said the pediatrician at the clinic wasn't quite willing to diagnose her with ataxia, but she felt that in Anastasia's case it's so mild only someone who regularly works with her would notice it. By the end of our conversation, I was pretty much convinced the PT was right, and I'd been wrong.
First, the PT said, she'd decided to slow the pace of the therapy sessions. Instead of doing larger movements, she was making the movements smaller and slower. "That way she doesn't get as freaked out," the PT said. Kids with ataxia don't like large, quick movements because it makes them feel unstable. I had to admit that yes, Anastasia was less stressed - although that could be chalked up to coincidence, I suppose.
Then she pointed out how unstable Anastasia still is while sitting. I never thought much about it, because she's stable enough that she rarely falls over. But most babies sit firmly, while Anastasia makes constant, slight adjustments, as if she's never quite balanced. "That's more like something a four month old would do," the PT said.
She also mentioned that babies with ataxia will sometimes crawl with their heads on the floor. That got me thinking: "When I put Anastasia on the floor, face down, she usually puts her head down to the ground. I always thought this was just an attitude thing - a way of saying 'I don't want to.' Could it be related to ataxia?" The PT said that yes, babies with ataxia fear loosing control of their neck muscles and bonking their head, so they'll often put their head down right at the start.
The PT also feels Anastasia's apparent unwillingness to bear weight on her arms isn't due to lack of strength; it's due to lack of muscle coordination. It's hard for her to get her muscles coordinated enough to get up on her hands and stay there.
The PT also asked what time Anastasia goes to sleep at night. "About 6:30 or 7:00 pm," I said. She nodded her head and said, "Do you realize that's really early for a baby her age? She's so worn out by the end of the day from these constant adjustments she has to make in order not to fall over, she's totally worn out in the early evening. For Anastasia, it's like she's always on a water bed. Nothing ever feels stable."
These arguments all resonated with me, and when the PT said, "But no matter what label we put on this, her treatment is going to be the same." I nodded. I'd come to that conclusion many weeks ago, which is why I never strongly argued with the PT about her diagnosis.
So now we're focusing on helping Anastasia learn better muscle coordination by always shifting her weight - just a small amount - when she's sitting or standing. I'm also going to spend more time allowing her to sit on our bed. (It's very large, so it's not a safety problem.) The not-quite-stable mattress should help her.
The PT feels there is little point in trying to get Anastasia to crawl at this late stage. She feels Anastasia will either never crawl, or will crawl after she learns to walk. So we're focusing more on getting her on her feet and moving from side-to-side.
The PT also stressed it's not that Anastasia is never going to walk or do any of the other developmental things other kids do. It's just that it's going to take her a little longer to hit those developmental milestones related to gross motor skills.
September 28, 2006
YoBaby is my new best friend.
Anastasia has always liked yogurt a lot, and lately, she'll eat it (lots of it!) when she won't eat anything else. That's a good thing. But I made it an even better thing when I bought YoBaby, which is a yogurt made with whole milk (as opposed to the low-fat milk most yogurts are made of). Anastasia adores it! She can easily eat an entire carton (120 calories)! Yeah!
Some of you asked what our daily schedule is like these days. I think it's much like any other mommy-baby schedule these days:
Anastasia wakes me up between 6 and 7 am, I give her a bottle, then put her in the Bumbo seat to play while I wash bottles and put away dishes. Then we do a little reading. (Anastasia squeals and claps her hands when she sees the books come out.) Then some physical therapy. I give her Prevacid, and put her in the swing for a nap. While she sleeps for a half hour or so, I do some work on the computer.
When she wakes, I usually let her jump in her jumper while I finish up some work, then it's time to eat some solids. Afterward, I change her clothes for the day, give her a bath (if needed), and we do some more physical therapy, followed by some play time. My husband comes home for lunch and snuggles and plays with Anastasia, and she takes an afternoon nap in her crib for about a half hour. While she naps, I do a little housework.
Then it's time for another meal of solids. We usually go for a walk afterwards, and sometimes Anastasia takes another quick nap in her stroller or her crib. We play some more, Anastasia eats another meal of solids, and then she "helps me" make dinner. Once hubby is home, we spent time together, and Anastasia is asleep on his chest no later than 6:30 or 7 pm. I give her a bottle at 7:30 pm or so, and we're all in bed by about 8pm. (What exciting lives we lead!) I get up around midnight to give Anastasia another bottle...and then it starts all over again.