Friday, March 7, 2008

Just another update

I realized I haven't posted in a while, and I figured I would update. I'm not sure who still reads this blog, but here is an update for anybody who does.

Sarah is doing very well. She is really enjoying school. I have a phone meeting today to get the paperwork rolling to get her into "extended school year" which basically means summer school. She will still have her current teacher and probably the same group of kids. It will be at a different location because they are renovating the sprinkler system at her school. She'll still get a bus as well, which is great.

She got her first stomach bug the third day of school. I couldn't believe it! I'll spare you the gory details, but it was a strange bug that seemed to go away and then come back. Even after I sent her back to school, it took a few days for her to get her appetite back. I had the same stomach bug myself, and it knocked me out for almost two days straight. Her dad caught the bug a few days after we got over it, but he is fine now as well. I'm about to invest in plastic bubbles for all three of us until the baby gets here!

She started up outpatient therapy at the hospital this week. She has feeding therapy followed immediately by speech therapy. I pulled her out of speech therapy at the college, only because it is too difficult to take her to speech two afternoons a week at the college and to feeding therapy another afternoon a week at the hospital. That's three afternoons a week she won't be napping. Not a pretty sight.

Anyway, she did a decent job at feeding therapy this week. We're working on getting the chewy tube into her mouth and getting crumbs into her mouth. She's pretty reluctant to let us do that, but we're getting there. One thing they want to try is having us put crumbs on a spoon with a food she likes and getting her used to the texture. She is doing okay with it at home.

The speech therapist said she did great. She is helping her with eye contact, and she is responding nicely.

She's getting used to the bus ride to and from school. She excitedly gets on and off the bus for school now. I spoke briefly with her teacher yesterday morning and she's doing a good job in the classroom. She's trying to ask for things verbally, which is great. We are noticing this at home as well.

She has begun to say "milk" now. It comes out as "mook" (rhymes with duke), but it's a clear request for milk. She has said this unprompted several times. She is also saying "apple" for applesauce, although it's pretty hard to understand.

She had her three-year-old checkup yesterday. She's very healthy! She's pretty big as well. She's 38 1/2 inches tall (75th percentile), and weighs 36 3/4 pounds (90th percentile). I couldn't believe how big she is. Anyway, we discussed a few things about the new baby and all, just about how she may have a mild temporary regression and how to introduce her to the baby. We're hoping she won't really mind too much because she will still be in school five days a week, napping most afternoons, etc.

Wednesday, February 20, 2008

Second day of school

Well, waiting for the bus this morning didn't go so well. It doesn't help that the bus for the regular elementary school also comes to our house because we live on a corner. They're scheduled at the same time! Anyway, Sarah was very distressed waiting outside as she's used to us going outside and straight to the car. I wound up bringing her inside and waiting in the foyer for a bit. Once the bus for the other kids came and went, I brought her outside to wait for her bus. This time I brought a toy with us to keep her happy. The distraction worked! She was very confused getting on the bus and pretty upset, but I think in a few days she'll be used to it.

I ran a quick errand while she was at school, and got home ten minutes before the bus was due to arrive to find it already there. Thankfully they were waiting for me. I don't know how long they were there. The bus driver said the times vary if not all of the kids are at school that day. I'll keep that in mind. I felt bad for not being there when she got home, but they were ten minutes early! I asked the driver and aide how she was, and they said she got on the bus, walked to her seat, and climbed right up. I was surprised she adjusted so quickly! Hopefully that bodes well for tomorrow morning.

The note from her teacher said she was in a good mood today. That's always nice to read. I hope she's enjoying school.

Tuesday, February 19, 2008

The feeding clinic ends and school begins!

Well, we are done with the feeding clinic now. We are now in outpatient services, and Sarah goes once a week for feeding therapy, followed by a speech therapy session as well at the same hospital. I pulled her out of the speech clinic at the college due to our schedule being very full as it is. If I'd kept her in speech at the college, that would be three afternoons a week we're out of the house for therapy and she won't be taking a nap. That's too much on her, and way too much on me. Besides, she absolutely loves the speech therapist she had while at the clinic, and I am really happy we can continue with her.

In typical Sarah fashion, she went out of the feeding clinic with a bang. Shortly before it was time to feed her lunch, the head doctor at the clinic told me she was limping. Nobody was sure why or what happened. She had come back from the sensory motor group (where they take the kids to the physical therapy gym and let them play on the equipment), and as far as anybody could tell, nothing happened there. She even walked all the way down the hall back to the playroom at the clinic. She just started limping out of the blue. Anyway, he was telling me that the nurse practitioner was calling our pediatrician's office to get us an appointment.

They brought me back to see her and the nurse practitioner got her an appointment for a time when she'd normally have her afternoon snack. If she's going to miss something, I'd rather it be that than lunch. I fed her lunch and she did a great job, and then her main therapist and one of the playroom ladies carried her and her stuff out to the car for me.

I let her lay on our bed and watch a DVD while I ate my lunch, and then we headed to the doctor's office. The doctor watched her try to walk and checked her out. She said that she looked okay and it was likely just a mild sprain, but sent her for x-rays just to be safe.

The x-ray lab was in the next building over, and unfortunately I had to call Rob out of a meeting to go into the room with Sarah. I can't go in while pregnant without being covered in lead and signing a waiver. It wasn't a risk we were willing to take, so he went back with her. She didn't want to hold still, and was very frightened. Which is to be expected. But the good news is, nothing was broken, and we were sent home and told to give her Motrin.

Friday night she crawled a lot and hardly walked, but Saturday morning she was jumping on the bed! She still had a slight limp on Saturday and Sunday, but the limp is completely gone as of yesterday morning. What a relief!

Today was Sarah's first day of school. I took her to school myself because she had a ton of supplies and I wanted to get her settled. The bus came this morning anyway (on time), and they told me they want her on the curb five minutes before their arrival time. Good to know for tomorrow! She smiled all the way into the building and classroom. She seemed a bit uneasy going into the classroom, but was just barely fussing when I left. I didn't drag it out, which I think helped.

I ran much-needed errands and stocked up as best as I could since I will likely stop driving after this week as I am getting too big to fit behind the steering wheel!

I managed to finish my errands and eat a quick lunch before her bus arrived (a couple minutes early). Sarah was so excited to see me! She got off the bus as happy as can be. The bus driver said she was a little upset at first, but calmed down once they got moving. We both figure in a couple days she'll be used to this and will do just fine. She was happily running around the house when she got in, and I got a note from her teacher saying she had a good day. She got upset a few times, but played nicely with the boys in her class (she's the only girl).

I'm really excited about tomorrow since all I'll have to do is get her on and off the bus!

Thursday, February 7, 2008

Week 5

Sorry I haven't been updating. I've been exhausted lately!

Blogspot finally works from the computer here at the clinic, so I actually have time to update.

They have started the protocol at the clinic where she has to earn back the TV (or toy, she responds equally well to the TV and a toy) by doing something with a non-preferred food. It's definitely getting better. I also have been doing a lot of the feedings lately. She actually eats better for me than the therapists. That's fine with me considering the therapists aren't going to move in with us when she gets discharged!!!

Our family meeting was last Thursday. Nothing earth-shattering was discussed. She is still making progress overall. It's slow, but steady. So far they are still planning to discharge her next Friday, February 15.

This past weekend I gave Sarah her Gerber Graduates peaches in her oatmeal without cutting them, and she ate an entire ounce both days! So that's great. We're practicing a few things from the protocol at home as well. I try to get her to at least practice "kissing" graham crackers or Cheerios. And she seems to respond well.

Sunday was Sarah's third birthday party. It went really well. She even seemed to realize she was the lady of the hour. She had the cutest grin on her face when they were singing to her. We had four kids blow out her candles since Sarah doesn't know how to do that yet. She even tasted a little bit of cake icing. The last time she tried that (this past December) she threw up. This time, she didn't even make a face! I'll try to add some pictures to the blog from home if I get the energy.

I've been spending more time at the clinic lately because I'm doing a lot of her feedings. I've missed at least one meal a day all week because of appointments. But I'm done those for the week, so that's good.

We got the official word on Tuesday that Sarah is in the morning class at school. They originally stuck her in the afternoon, which I thought was really dumb. Most 3-year-olds I know take an afternoon nap! I already have to sacrifice Sarah's nap two days a week to keep her in speech at the college. I was also worried about having to call the college and try to reschedule her sessions because I'd already talked to her student clinician (who seems very nice). But I got bus information and everything, so all is well. I filled out the huge pile of paperwork for her school, so I'll probably try to drop those by the school sometime next week.

That's us in a nutshell for now!

Tuesday, January 29, 2008

Week 4 Update

It's been a few days, so I suppose I should update.

Friday Sarah was absolutely horrible at the clinic. She didn't want to do anything they asked. If I had to guess, I'd say it was because the first "non-preferred" food they gave her was baby oatmeal mixed with regular oatmeal. Even the therapist feeding her said it looked and smelled awful and she wasn't going to push something that disgusting. I'm guessing it set her mood for the day, but who knows?

I met with the psychologist shortly after the feeding, and we went over some things to do at home. For one, we need to establish clear consequences for misbehaving. We have to work on "time out" so she knows when she misbehaves, that's what she's doing. That way, when we have the baby, she'll learn quickly that you can't hit the baby, kick the baby, etc. They use time out in the playroom (she got one today for hitting one of the playroom ladies), so that should make it easier for her to understand. The psychologist said as far as the fear of animals goes, it's a phase. If we ignore her complaints and show her we're not bothered by the animals, she should get over it pretty soon.

We had a busy weekend. Saturday morning we went out to breakfast where I'm pleased to report that Sarah even ate her diced pears in oatmeal at the restaurant. I'm glad that's not something she is restricting to the clinic and home only. That afternoon, we went to a birthday party. The moms there brought vanilla pudding, just for her. I thought that was sweet. The party was at a movie theater and we saw "Bee Movie." It was cute, and Sarah was pretty well-behaved.

Saturday night we went out to dinner with Rob's dad and my parents because it was Grandpa's (Rob's dad's) birthday! Sarah was pretty good at that restaurant as well. We hung out at our house for a bit afterwards, and Sarah had a good time seeing her grandparents.

Sunday was low-key. She ate almost an entire ounce of diced pears in her oatmeal that morning! We were very proud.

Monday started her fourth week at the clinic. I only watched breakfast because I had errands to run, mostly for her birthday party. She did great at breakfast. She ate a fair amount of diced pears in her oatmeal, a few bites of "chunky" pears (meaning not quite pureed to baby food consistency), her usual yogurt, and she even licked syrup off a french toast stick.

Today I only saw breakfast, taking the day to relax at home. She didn't behave as well as yesterday, but she did okay. She seemed to really enjoy putting Cheerios back in a bowl, but didn't really want to "kiss" them or lick the crumbs.

She's gotten too smart lately for what they're doing with the behavior modification. She's figured out that the video is coming back, and she's not terribly bothered when the video is taken away. So, the psychologist and OT and I talked and the psychologist came up with three ways to get her motivated again.

First - easiest - Take the video away longer. Right now it's off for 15 seconds or so. They're going to increase it to 30 seconds. We'll see what happens with that. I doubt that will have much effect, but we'll see.

Second - middle ground - Take the video away when she doesn't listen. She has to "earn" back the video by doing something with a non-preferred food. They can cut back on what they're asking, but she has to do something. For example, if she won't lick the crumbs of a graham cracker, the video goes off and she has to "kiss" the graham cracker. If she won't "kiss" the graham cracker, the video goes off and she has to touch the graham cracker. If I had to guess, I'd say that will be what works.

Third - possibly too harsh - Limit preferred foods. She can have five bites of a preferred food, and then no more until she does something with the non-preferred food. Both the OT and I think Sarah will likely decide she'd rather go hungry.

Anyway, so that's where we are.

Thursday, January 24, 2008

Feeding Clinic - Middle of Week 3

Interesting week so far.

Tuesday Sarah did okay. Breakfast didn't go well, unfortunately. She gagged on her first bite of food, and that set her off for the rest of the meal. They got her to behave, but it was tough. I honestly can't blame her. I certainly don't want to eat something if it made me gag.

Lunch went pretty well. Nothing earth-shattering, but she more or less did what they asked. She still argues, but she's fighting less and less.

Her afternoon snack was fed to her by a therapist who has never fed her before. It went okay, but Sarah spent a good bit of the feeding trying to see how far she could push the therapist. I can't remember anything special either way about the feeding.

Wednesday was her birthday and was a short therapy day for us. We left after lunch to make her ENT appointment. More on the appointment in a sec.

They said she was acting like a spoiled princess in the playroom, so I guess she knew it was her special day. I have no idea. Anyway, breakfast went okay. She refused to even touch the oatmeal, which doesn't terribly surprise me. So the primary therapist said she thinks we need to just take a step back and go back to baby oatmeal and gradually switch again. I agree. The other problem with breakfast is the therapist who fed her was only pausing the video when she wasn't listening. It had much less of an effect because Elmo frozen on the screen isn't really a big problem for her. Oh well, something to bring up either tomorrow or at the next family meeting.

Lunch I only saw half of. She did okay, from what I saw. She licked little bits of chicken nuggets off her lips, and I think they got her to lick a little bit of spaghetti sauce off a nugget. I can't remember for sure at this point.

After lunch, we headed to Party City for party supplies. Sarah picked out Sesame Street for the theme (surprise, surprise). She was really funny in the store. She kept putting my hand towards the display as if to ask me to buy the entire section! We still need a few more things, but we have most of the party goods now.

Then we headed to the ENT. The appointment went okay. The doctor and I were disappointed that the left tube has come out. It's still in her ear, but it's just sitting there and no longer attached to the ear drum. We were both hoping the tubes would both stay in all winter. Anyway, the ENT said he doesn't want to just replace the tube right now. He wants to see what happens. I'm to call them if I suspect she has an ear infection (not the pediatrician if possible). Otherwise, he wants to see her in two months for a look. Cross your fingers that she doesn't need the tube replaced! I'm very pleased the doctor isn't just jumping straight into surgery. The surgery wasn't a big deal, but it doesn't mean I want to put her through it again.

After the ENT appointment, we went to Toys R Us to use her birthday club coupon. She got a balloon (which she loves) and they announced her birthday over the loudspeaker. I let her pick out a toy, and she chose an Elmo bath toy. No surprise there.

Today I didn't see any of her feeds because I had a midwife appointment and then spent some time with my mom. But the primary therapist made two adjustments to her protocol, and at the end of the day she said Sarah finally ate enough of the new foods for them to measure.

The two adjustments - they are now giving her whole milk at the clinic. She's a little low in calories on the days she spends at the clinic, so they are giving her whole milk to make up for them. We're to continue with 2% at home. The other one - which I was about to suggest - is that they are no longer pushing her to drink from a regular cup. I'm relieved about that. She doesn't like it, and doesn't want it, and I don't care if all she uses right now is a sippy cup. A straw would be nice, but it's a very low priority.

Anyway, she ate 0.1 ounce each of eggs with ketchup (breakfast), graham cracker crumbs (lunch), and Fig Newton crumbs (snack). It doesn't sound like much, but today was the first day she ate enough of anything new to even measure. And that's 0.1 ounce each more of those foods than I've ever gotten her to eat!

In Mommy news, the midwife appointment went fine. I passed the glucose screen (yay!), but I have low iron (boo!). Thankfully the low iron isn't too bad. I just need to get back to taking my iron supplements. Easy enough. The baby has a strong heartbeat, and I'm measuring just fine. The midwife stressed that I need to take more time for myself, especially during this difficult time, and I plan to try and do that.

Monday, January 21, 2008

Feeding Clinic - First day of Week 3

We've been working a little at home to very gently push some textures, and it's going well there too. All I changed this weekend was adding just a few diced pears to her baby oatmeal at breakfast. I figured I'd see if she'd just eat a little bit of them, and she did with little to no argument.

Apparently, my decision to gently push textures was a good one. She had a very good day today overall.

At breakfast, she had her usual baby oatmeal, but the therapist added just a tablespoon of regular oatmeal. Sarah noticed the change and made a few weird faces, but willingly ate the entire bowl without incident. She also ate a fork-mashed banana mixed with applesauce and then fork-mashed banana mixed with yogurt. At one point, she had a big chunk of banana she started to spit out, but then she pulled it back into her mouth and she chewed and swallowed it, shocking both the therapist and me! She refused to let them put the banana to her lips, but she willingly had a graham cracker put to her lips. The therapist was able to put graham cracker crumbs onto her lips, and she licked the crumbs off. I was very pleased!

Lunch went almost as well. She ate baby spaghetti, one bite was mixed with Chef Boyardee ravioli. She didn't like that bite and didn't want it mixed with the ravioli, but she handled the one bite okay. She only made a face. She refused to even touch the ravioli when it was mashed up very tiny. It was frustrating for me to watch because it was cut way smaller than I used to cut it when she would eat it. I know she'll get back to it, though. She licked saltine crumbs off her lips as well. I forget what else she ate, but overall she did a good job.

Snack went well too. She ate fork-mashed pears mixed with applesauce. The therapist gradually increased the amount of pears in the applesauce, and at the end of the snack, it was probably 75% pears and 25% applesauce. I was really proud of her! The therapist worked hard to get her to lick crumbs from a Nutri-Grain bar off of her lips, and she managed to get Sarah to do it. Not without a lot of protest, but oh well. She tried to get her to put cheese curls up to her mouth, but Sarah was done by then. The meal was a lot of work and very hard for Sarah, so that is okay with me.

Overall, a very encouraging day. I am staying tomorrow as well. Not sure what I am doing the rest of the week.

Thursday, January 17, 2008

Feeding Clinic - More on Week 2 & First Family Meeting

Things have been going well at the clinic. The TV is really working nicely has a motivator. At lunch today, a psychologist was feeding her and Sarah really put up a fight. The psychologist was very firm with Sarah, and didn't let her get away with anything! By the end of the meal, she was allowing the psychologist to put a cookie up to her mouth and then to put a chewy tube up to her mouth. She didn't like either thing, but she stopped fighting so hard when she realized it wasn't getting her anywhere.

Her snack was even better. This time a speech therapist fed her. She refused pureed pears at first because they weren't in a baby food jar, but with a little distraction from the TV she ate them. They added diced pears to the bite, and she spit it out each time. But the fact that she even got them into Sarah's mouth is a plus. Sarah ate the pudding beautifully (of course), and did something very very surprising with the graham cracker. She actually was putting it up to her lips to "kiss" it. The therapist even got her to lick the graham cracker a few times. She didn't like that part, but she did okay. I'm just amazed that she was actually grabbing the therapist's hand to put the graham cracker to her lips. You could have knocked me over with a feather! Maybe she'll eat graham crackers before this is over. That would be a start. They're also working with her on drinking from a regular cup. She took four sips of milk, all took a lot of convincing. She definitely didn't like to feel of a regular cup to her lips, but at least she tried.

The family meeting was pretty good. We were able to conference call Rob so he could participate. The primary therapist thinks the first major hurdle is to get over the behavioral problems. We are making major headway there, so I'm happy about that. After we get the behavior under control, then they will be able to help her more. In other words, if she stops fighting them so hard, they can teach her to chew foods and try new textures. The psychologist said that one of his colleagues (the therapist who pushed Sarah very hard at lunch) will be meeting with me soon to help solve some non-feeding-related behavioral problems we're having at home. I'm very interested in doing that because I'd like to have a lot of these issues under control before the baby gets here.

After the meeting, we braved the icy roads and heavy traffic. It took us over an hour and a half to get home. It was awful! Thankfully, most of the roads were just wet. The hospital parking lot was a little slippery, but not awful. The street where the hospital is located wasn't a ton better. Our street was pretty slick, as was our driveway. But we made it home just fine, and Sarah actually slept in the car for the better part of the trip. She still isn't napping at the clinic, so that's great.

Sarah had a speech therapy session today. The speech therapist said she did a great job making eye contact, and she was working on some signs with her. I'm pleased to hear that. Hopefully this will be a good lead-in for when she starts at the college next semester.

I'm sure I'll be updating sometime next week. I'm not staying at the clinic every day, so I don't always know for 100% sure what she does at every feed. She seems to really enjoy being there and spending time in the play room, so I'm happy about that. She runs into the hospital very happily, and generally heads straight for the playroom when we get there. It's really cute.

Tuesday, January 15, 2008

Feeding Clinic - Week 2

Well, we may have found the trick to getting Sarah to listen at the clinic. They have started showing her an Elmo DVD. If she hits, kicks, throws, or doesn't do as they ask, they stop the DVD. They used this for lunch and her afternoon snack, and it was pretty effective. She tested both therapists, but quickly caught on that her behavior was only making Elmo disappear. She still is protesting a lot of what they are going, but isn't fighting nearly as hard.

I am not staying around as much this week. I only watched breakfast yesterday. I stayed the whole time today, and I probably will Thursday. But I have an appointment tomorrow, so I won't be staying the whole time. And Friday I will probably just relax at home for a while.

Thursday is our first family meeting. I'm curious as to what will go on there.

The only other problem we're having is that Sarah isn't napping at the clinic. They know she's tired, but she can't seem to settle herself. We're going to bring the Pack 'n Play tomorrow and see if that works. Don't worry, I'm not lifting it! Sarah is almost too big for a Pack 'n' Play, but she sleeps nicely in one at my parents' house, so hopefully it will work at the clinic too. I wouldn't care if she didn't want to nap, but she was so tired an hour before her usual bedtime last night that she was screaming uncontrollably at the top of her lungs. It was awful!

That's it in a nutshell for now!

Saturday, January 12, 2008

Feeding Clinic - Day 4

So, too tired to blog yesterday. I can catch up today, though, because we don't go on weekends.

Yesterday started out very discouraging, but quickly got much better.

Her breakfast feed was pretty bad. She gagged on oatmeal and threw it up a little too. I may talk to her main therapist and see if I should just give them a box of her baby oatmeal and see if they can mix them or something. It's the same texture was the baby cereal, so I'd guess it's a taste thing. I don't know. They wanted her to touch pieces of a pancake. She did - mainly to throw them on the floor. They did manage to get the chewy tube into her mouth after dipping into yogurt, but only once. Sarah got wise to that pretty fast. I can't remember if she let them put the pancake to her mouth or not, but I don't think so. She spoon-fed herself yogurt very well, and drank all her milk. So not a total wash, but otherwise not a good feed. I was feeling pretty down after that.

Odd coincidences between me and the therapist who fed her. Her name is Amy, she's pregnant and due in April, and she's delivering at the same hospital where I am with the same midwives. She wants a doula, but we can't have the same one because our due dates are too close together and I know my doula won't take her. I told her I'd try to get some names for her.

Anyway, after breakfast one of the speech therapists came and talked to me and said she wanted to take Sarah this afternoon for a speech session since I requested speech therapy for Sarah. We went over what she's doing, the things she likes, what we're doing to help her, etc. The therapist was very pleased with the way we're helping her - just that we're doing minimal prompting to get a response out of her and increasing the prompting as necessary. For example, if I know darn well she's hungry, I'll say "What do you want?" first, and if she doesn't say "eat", then I'll move on to "Do you want to eat?", which usually gets a response.

I called the college to get her last report faxed over, and they said they'd get to it. I'm sure it will be there Monday. I told the therapist if it's not there by Tuesday, to let me know and I'll call back.

Then it was time for Sarah's lunch. She had a different therapist feeding her, and Sarah really did well. She ate an entire Stage 3 jar of food that I haven't gotten her to finish in I don't know how long. It's one of the really lumpy Stage 3 foods (Beech-Nut Turkey Rice). It has peas, rice, little pieces of carrot, etc. She ate squash as well, just baby food squash, and the therapist sneaked the chewy tube dipped in squash into her mouth several times. Sarah didn't like it, but didn't get horribly upset either. She put bread to Sarah's mouth five times in a row without any argument from Sarah (my jaw nearly hit the floor when this happened). She tried to get her to lick the bread, but Sarah didn't want to stick out her tongue for her.

I grabbed my lunch and hung out and then the speech therapist took Sarah for her session. She wanted to take Sarah by herself, and I agreed that was the best idea. I stopped staying for Sarah's speech sessions a while ago because she wasn't behaving herself when I was there and wanted to hang on me. And when she sees me at the clinic, she knows it's time to go home. She came back and said Sarah did beautifully. She really enjoyed a lot of the things she did with her, and was trying to say "more" when signing it. I'm really happy about that, although speech therapy really hasn't been a problem for her in a while.

Then Sarah had her afternoon snack with her main therapist. She did pretty well there too. She ate the applesauce she gave her, spoon-feeding herself almost the whole thing. She sneaked the chewy tube dipped in applesauce into her mouth several times. Sarah put up a fight, but the therapist didn't let her get away with it. Right now Sarah can play with a toy during the meal, but if she hits or throws a fit, she gets the toy taken away. Sarah didn't like that at all, and I think she's starting to get the hint that this behavior isn't going to fly. She reluctantly let the therapist put a cheese curl to her mouth several times. She put up less of a fight than usual with that. Same thing with a piece of cheese.

Overall, I'm pleased with her progress so far. It's going to be in baby steps. But just the idea that she's allowing these foods anywhere near her mouth is amazing!

Thursday, January 10, 2008

Feeding Clinic - Day 3

This was the first day of treatments. They have their work cut out for them, but I did see a very small amount of progress already.

They start with a familiar food because Sarah gets so hungry she just doesn't want to deal with them. She is doing great with spoon-feeding her purees. She did most of each food herself or with help, very little was spoon-fed to her.

Anyway, they are trying to get her to bite on a chewy tube, which is basically this red rubber tube that I'd guess is probably about the consistency of chewy candy. Just to get her jaw moving properly. So far, she won't put it in her mouth. But they're going to keep trying.

They tried regular oatmeal for breakfast again, this time it had been put through a blender. That went about as well as if they hadn't bothered to try to smooth it out with a blender. She gagged a lot on it, and I honestly thought she'd throw up. She kept it down, thankfully.

They are trying to introduce meltable solids - cheerios, cheese curls, Gerber puffs, etc. First she has to touch them five times, which hasn't really been too difficult. Then they want her to "kiss" the food, in other words put it up to her mouth. That has been rough. She really doesn't want to do that, and avoids it as much as possible. They are being very patient with her, though, and they are getting her to put the food up to her mouth.

They tried regular spaghetti, which she has eaten in the past, but she refused it. They got her to touch it, which she did somewhat reluctantly, and they got her to kiss it. She wasn't happy about that, but I think we may get back to regular spaghetti soon because she was licking the sauce off of her lips.

They're also using some reinforcement to get her to touch, kiss, etc. the new food. She can play with a toy while they work on the food, but if she refuses or hits, etc., the toy is taken away and the therapist turns away from her for a short period of time, maybe 30 seconds. I'm not sure yet how this is working, but I think there's a good chance it will. She doesn't like having the toys taken away, so I have a feeling once the connection is made that certain behaviors make toys go away, she may learn. We'll see.

Anyway, I do see progress. We have been trying to get her to put textured foods to her mouth, but no dice. So, even though she didn't like it, she managed to get the foods up to her mouth without her getting terribly upset.

I'm staying at the clinic all day again tomorrow. I am going to probably spend less time there after this week, but we'll play it by ear.

Wednesday, January 9, 2008

Feeding Clinic - Day 2

This was Sarah's first full day.

I dropped Sarah off at 8:45, and we got her height (37 1/4 inches, up 3/4 inches from September) and weight (no change). Then I dropped her off in the playroom and headed to my midwife appointment.

Nothing too earth-shattering there. Sean sounds good, and I've moved on to two-week appointments. I don't remember them starting this early with Sarah, but I'm not arguing either! I have to go in for my GTT soon (glucose tolerance test, basically the gestational diabetes test). I'll probably do that tomorrow or Friday afternoon while she's at the clinic. Not sure.

Anyway, I got back in time for her lunch feed. She ate beautifully - just her typical lunch. Again, she refused graham crackers. They tried giving her regular oatmeal at breakfast, which went over like a lead balloon. She gagged on it, which I figured would happen.

Then I met with the social worker and found out we're eligible for more benefits due to the autism diagnosis. So I'll do the legwork on that soon.

I was done the meeting and then was able to watch her afternoon snack. She was pretty upset (probably due to not napping and being out of sorts anyway), but the psychologist feeding her got her calmed down. She ate all the pudding (no surprise), a fair amount of pureed squash, and refused the cheese. She took a few sips of water, but she didn't like it.

Then I took her home. The therapists are starting the treatments tomorrow, and they said they have some ideas. I'm curious to see what happens.

In non-Sarah news, I'm pleased to announce the arrival of Nicholas Joseph! My best friend had her baby at 2:53 pm. He was 6 lbs, 2 oz. and perfectly healthy. I'm going to see him tomorrow and I can't wait!

Tuesday, January 8, 2008

Feeding Clinic - Day 1

Well, I was terrified this morning. I had no idea what to expect. Thankfully, things went pretty well.

I fought traffic on the way to the hospital (as usual), but we got there a little after 8. The program manager met us and walked us back to the clinic. I took care of the paperwork while Sarah sat in her stroller. Then she got weighed (33 1/3 lbs, up over 2 lbs from September!) and they tried to measure her, but she was very upset. They'll get her height tomorrow.

Sarah went to the playroom, and was thrilled to see that they had a ton of Elmo toys. I went over a few things with the playroom ladies, like Sarah's latest nasty habit of hitting random children.

Then I fed her breakfast. I brought her regular meal, and she ate like crazy! She didn't drink much milk, but she ate almost all of every food I brought her. She even did a good job feeding herself. Everyone was very impressed.

She walked to the playroom with one of the therapists, and I went over more information with everyone. We discussed how typical the feeding was, and about some of the things they will do to get her to eat table food (using toys, etc.), and what types of things I wanted out of the program.

Then the nurse practitioner did a checkup, and I had her check Sarah's ears. Her ear drum is still red, but it's not quite an infection. She's going to keep checking it, and she'll call Sarah's doctor if it gets worse and figure out what needs to be done. Both tubes are in place, so that's good.

I had a meeting with the whole group a bit later where we discussed goals, and then I took Sarah home. She seems to have had a good time in the play area, so I'm really happy about that.

Her goals (in a nutshell):
- chewing her food, starting with solids like Cheerios that melt in your mouth, and chewing her Spaghetti-o's
- eating age-appropriate textures
- feeding herself with utensils
- behaving appropriately during mealtimes (as in, if we give her something and tell her to eat it, she will, etc.)

So, I have to meet with a social worker tomorrow at the clinic, and I have to feed her the afternoon snack as well. I'd stay all day tomorrow, but I have a midwife appointment in the morning as well.

I probably won't update every day, but I'll certainly come back and post anything interesting that happens!

Thursday, January 3, 2008

IEP Meeting Report

After hearing one horror story after another about IEP meetings, I was very nervous about this morning to say the least. I worked very hard to mentally prepare myself for a fight. I just went over the reasons to myself why I wanted her in the classroom for children on the autism spectrum, and decided that it was the one area where I would not bend! I was willing to "go with the flow" on goals, but I wanted her in the classroom for children on the autism spectrum, and I wanted her to get speech, OT, and PT. I was willing to bend on how often she'd be getting the various therapy, but the most important was the classroom.

I guess I really lucked out with the meeting. None of the horror stories played out for me. I thought all the goals set were reasonable, as well as how often she'd be getting therapy. I plan to have her continue the private speech therapy at Towson University because they have done such a good job with her so far.

I can't remember all of the specific goals they had, but they had at least 2-3 in each area. As far as the type of classroom, they described the two (there's one for kids with developmental delays of all kinds, and one specifically designed for children on the autism spectrum), and asked for my opinion. I wanted to know if I was in for an argument at all, so I said I had an opinion, but I wanted to hear theirs first.

The school psychologist stated that she thought Sarah would do best in the classroom designed for children on the autism spectrum and stated her reasons. I readily agreed, as did the teacher Sarah's had through Infants and Toddlers for nearly two years. So, we are set for 5 mornings a week in that type of classroom setting. She will be pulled out for speech, PT, and OT. All of which is fine with me.

So, after the horror stories I heard about how hard it is to get what you want in the county, I'm pleased to say they did not ring true for me.

Sarah is set to start school on February 19. We don't have the official word on which school, but there are only two in our region of the county that have the classroom she needs. One is closer than the other, so that is where she is most likely going. It's up to the placement office as to specifically which one, but I'll be surprised if she goes to the one further away. It doesn't terribly matter as she'll be riding a bus (in a car seat, don't worry!).

Wednesday, January 2, 2008

Just a quick intro post

To make it much easier for me to share Sarah's progress with everyone, especially in the upcoming feeding clinic, I've created this blog. So, rather than I e-mail everyone every time there is an update, just check this website periodically. I figure there will be a blog tomorrow after the IEP meeting. Let's just hope it's a happy blog!