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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Saturday, July 30, 2011

Still doing fine

Have I mentioned before that sometimes progress is frustrating to me? It is. I like to understand things. I want to know why things are the way they are and why they work or don't work. I like to have reasons. But you know what? When it comes to Raya, I don't usually (EVER) get what I want.
When things started to go wrong with her shortly after she was born, I wanted to know why. I wanted to know why she cried for hours at a time every evening no matter what we did for her. I wanted to know why, even though I had narrowed my diet down to 8 mild foods (try getting enough calories to breastfeed from 8 foods!), she still couldn't keep anything down. I wanted to know why the spitting up turned into forceful projectile vomiting. For 18 months now, I have wanted to know why all these tests keep coming back normal or near normal when it is quite obvious that there is something wrong. 
And now, to add to my list of unrealistic demands that will most likely never be met, I want to know why my child who has needed to be fed directly into her small intestine for the past 9 1/2 months can suddenly tolerate getting all 900 of her formula calories and all 5 ounces of her pedialyte fed into her stomach.
Maybe it's a little ungrateful of me to feel that way. It probably is. I'm not ungrateful though, I'm SO glad that we're not cleaning up massive amounts of vomit several times a day anymore, with or without blood in it. I'm grateful that I don't have to sit there and hold a towel or a bowl in front of her while her whole head turns beet red as she throws up until her stomach is empty and then dry heaves for 5 minutes at a time. I'm thrilled beyond belief that she will put food in her mouth without gagging & vomiting now. So yes, I really am grateful. Often though, that gratitude that comes each time we make a step forward is accompanied by the frustration of not understanding why or how we are taking that step. I think that because of how hard things were the first 18 months of her life, a part of me feels a need to have to do something more in order to resolve things. Can it really be so easy that all we have to do is wait this out and her body will take care of things on its own?
As I was laying awake in bed last night (I took an excederin migraine for the most horrible headache I've ever experienced and then couldn't sleep after) Raya got restless and started crying in her sleep again. I could tell that her stomach was bothering her and I found myself kind of wanting her to throw up so she would feel better. That thought was immediately followed by, "What in the world is wrong with me that I'm wishing my kid would throw up?!?" Really, I just wanted her to feel better but she never threw up. She cried in her sleep 4 or 5 times before I fell asleep but she didn't wake up so I didn't bother her. Hopefully her body will continue to adjust and she'll be more comfortable while she's sleeping.
There. It feels good to have that off my chest. Things really have gone surprisingly well considering that this is a sudden and drastic change that should have been a big shock to her system. She has a history of not tolerating change well, which was why her doctor warned me that we may be in for a rough weekend and offered to wait until Monday to change the tube in case we had to put the GJ back in. So far, things are continuing in the right direction though. The most difficult thing so far is that we had to decrease the rate she's being fed at to 60ml/hour, so now instead of being on the pump for 14 hours a day, she's on it for 17.5. It's a giant pain in the rear because she hates it as much as we do. When it's 114 degrees outside like it was today, all she does is sweat the whole time it's on in spite of the ice pack inside the backpack.
She's still not nibbling (eating is too strong of a word) as much as she was before we went to Idaho but she'll get there. She had a make-up PT session yesterday and OH MY GOODNESS it was the absolute WORST session she's ever had. Worse than the first session we had with this PT when all Raya did was cry when Jessica tried to touch her. The only difference between that session and yesterday's session was that Raya is bigger and stronger now and she doesn't cry herself into vomiting anymore (knock on wood). All she did the whole time we were there was scream and cry and try to cling to me. I even had to leave the room at one point just so her PT could stretch her a little. If there's one thing we learned from taking a 2 week long trip, it's that Raya really does benefit from all of her therapies! We can't wait to see her OT on Tuesday. Hopefully she can get some good sensory work in and Raya will start returning to her normal little self.

Friday, July 29, 2011

So far, so good

Aside from a few episodes of crying in her sleep last night, things went fine with the first overnight feed. She's being fed slower than she was with the GJ tube because her stomach isn't used to having formula in it, so if she continues to tolerate it, we'll increase her rate so she's not on the pump for as many hours.
I was surprised at how relieved I am about not having the GJ tube anymore for the sole reason that if the G tube comes out, I can put it back in myself. GJ tubes have to be placed at the hospital. Peace of mind? Yes, please.
Oh, and in other news, I finally got a copy of the letter from the neurologist who diagnosed her with cerebral palsy last October. Nobody had ever told me what type she has or given me a copy of the letter. Anyway, her diagnosis is spastic diplegic cerebral palsy, which means that it affects primarily her lower extremities. For once, I googled something and it actually helped instead of creating unnecessary paranoia. :)

Thursday, July 28, 2011

We're out of the club

We are no longer in the GJ tube club. Normally with a statement like that, I would put an exclamation point but I don't feel like it. I still have very mixed feelings about this change, which has led me to the realization that I have become a cynic and/or pessimist when it comes to making changes with Raya. Why? Probably because she has a history of difficulty adjusting to ANY kind of change, especially big ones like where her food goes. NG tube=lost all desire to eat orally and really got the puke-fest going, G tube=turned a 24 hour hospital stay into a 5 day hospital stay because of increased vomiting & fever after surgery, started bleeding into stomach, started vomiting blood, kept vomiting blood for 2 months, etc. GJ tube=stopped vomiting blood but started vomiting bile, started requiring almost continuous drainage of stomach, retching replaced vomiting, etc. etc.
So yes, I am a cynic. I don't expect this transition to go smoothly. I will be putting towels around her bed (in addition to the one that's already there) tonight just in case she pukes in the morning. Even though the doctor said to try 60ml/hour (she was at 75/hour for J feeds), I might just knock it down to 50ml/hour for tonight just to play it a little bit safer. Optimistic? No. Realistic? Perhaps. I'm trying not to be negative about the whole thing but just going off of prior experience, I know better than to expect her to go back to G feeds cold turkey with no bumps in the road. And you know what? There is NOTHING wrong with that. Nothing wrong with me hoping for the best but expecting the worst, and nothing wrong with it if she does have trouble because we've been there before and we know we can handle whatever might happen. And she probably will be fine but it might take her a couple weeks to get there.
Today was exhausting for me. We spent 12 hours and 45 minutes yesterday driving from point A to point B, and Raya cried for about 2 hours of it. We got stopped for road construction about 60 miles south of Lake Powell and had to sit there for 40 minutes, so that was kind of the end of her patience. And we still had 7 hours left. :) She cried for a while then, and she cried for a solid 90 minutes after I put her back in her carseat in Flagstaff. During that time, we realized that we are pretty good at blocking out crying children. I guess after 4 of them, you get that way.
Anyway, yesterday was exhausting and today was the aftermath of 4 kids being stuck in a car all day and then getting home where it was 115 degrees and they couldn't go outside to play like they've been doing for the last 2 weeks. I couldn't WAIT for it to be time for Raya's doctor appointment so I could drop the other 3 off at their friends' house. :) I love them dearly, but today I just needed a break even if it did come in the form of a doctor appointment. :)
So here's how it went. Weight-wise, Raya's dropped a little. It was a slight concern to her doctor so she wants her back in 2 weeks for a weight check, which we probably would have done anyway just because of changing the type of tube. She's 32.5 inches tall and weighed 24 lbs 2 oz, and the doctor said that was 45 grams less than her last weight. That's less than 2 ounces, which doesn't sound like much, but it also means she's not gaining. I'm not really surprised that she's down a little because being away from home for 2 weeks was really stressful for her.
Ok, just to review, here's the last picture I took today of her GJ tube with the extension tubes hooked up to it:

Dr. S asked me if I was SURE that I wanted to do it today because there is a possibility that it will have to go back in and she really wanted me to understand that. She said, "If we change it today and she doesn't do well with it, you'll be stuck dealing with that over the weekend so if you want, we can wait and change it Monday." I told her I was ready to just get it over with. :)
Then it was on to the exciting part. Dr. S said she'd never taken out a GJ tube before (she's been practicing for 28 years) so she called radiology first just to make sure there were no special instructions. There weren't. It's simple. All you have to do is plug a syringe into the balloon port, suck the water out, and pull the tube out. It's really weird to see something like that pulled out of your child. :) It was equally weird to see the hole in her stomach without anything in it. Someday when she doesn't need a tube anymore, she'll have a scar that will look a lot like a misplaced second belly button. Then she just popped in the shiny new G tube. It's SO exciting to me to have that tiny little G tube button in there instead of that HUGE fat GJ button. Speaking of which, I saved it. Gross but very interesting. I will be keeping it for Raya to take to school for show & tell someday. She'll know more than her teacher about digestion anyway so she might as well have something interesting to talk about, right? :)
Here's a little lesson on the anatomy of a GJ tube.
It was a LOT bigger than I expected. The tube was about as long as I expected but the diameter of the J portion was a lot bigger than I had pictured. I also had a different picture in my head of how the G portion worked. I thought it was just one opening but there are actually 4 openings along the portion of the tube that's in the stomach. I think the black part along the J portion has to do with making the tube stiff enough to guide into the intestine and also makes it visible on the fluoroscope.
SO there you go. That's the exciting news around here. Hopefully there will be good news to share tomorrow after her first night of gastric feeds in 9.5 months. Eek. Fingers crossed.

Today is the day

We are back from our 2 weeks away from home and the much anticipated/dreaded day is here. Today, we will be saying goodbye to the GJ tube that Raya has had for the last 9 1/2 months and going back to a regular G tube. I have very mixed feelings about this. On one hand, I know it's a big step forward towards normalcy. Being fed directly into one's small intestine is not normal. :) It will also mean that she doesn't have to walk around with a bag of bile hanging from her stomach anymore, which will make it possible for her to do some things we haven't let her do yet, like go to nursery at church. Bag-o-bile isn't something to mess around with, you know. :) The theory has been that the J tube passing through the pylorus (opening from stomach to small intestine) has been responsible for the excessive bile in her stomach, so if that's true, removing it should alleviate that problem. I hope so because while we were gone, she started spitting up again and bile was what kept coming up. It landed on me several times and probably ruined a couple of my shirts and definitely ruined a couple of hers.
On the other hand, the GJ tube has been a security blanket for me. I have been able to put her meds in the J tube and KNOW that they're going where they need to and that they'll stay in. The formula goes in and stays in, and even if she were to get sick, I could still keep her hydrated through the J port. Without the J tube, there's the possibility that she could start vomiting again, which includes meds, formula, and anything else she has in her stomach. I think that having the meds go through the J tube for all this time has been a huge factor in why she finally stopped vomiting, so that part doesn't sit well with me.
All worries aside, I do think that after an initial adjustment period, she will do fine with G tube feeds. After all, before her tube change in May, we did have her to the point where she was getting an overnight J feed and then bolus feeds to the G during the day and she was doing fine with that. (not gaining much weight but was tolerating the feeds) And of course, I am SOOOOOO looking forward to getting rid of that ENORMOUS "low-profile feeding tube device" and going back to one that actually IS low-profile! I know a lot of parents of feeding tubes feel like the Mic-key G tube button is huge, but after spending 9 1/2 months being paranoid about her big fat GJ button getting caught on things, I can't wait to go back to a G tube that I could put back in myself if it happens to get pulled out.

Good riddance, big huge GJ tube

Welcome back, nice little G tube!
(PS these are old pictures)

Sunday, July 24, 2011

Having fun in Idaho

Aside from all the meltdowns, Raya has been having some new and fun experiences in Idaho.

Climbing on the table to get into the bag of REALLY spicy Hawaiian BBQ rings, which didn't faze her little underdeveloped taste buds one little bit :)
Swimming in the wading pool with cousin Curtis, whose flat stomach really accentuates Raya's big ol' belly :)

Playing outside in the beautiful weather which led to getting one of her little bum cheeks sunburned since it was hanging out of the swim diaper a little :)

Actually going to sleep while touching another human being, which is pretty much unheard of for Raya. She snuggled with Grandpa while we had a DATE NIGHT!! It was fabulous. :)

She's warmed up to people a bit since we got here a week ago and she's doing a little bit better about not clinging to my leg and whining every second of the day. She absolutely LOVED the little wading pool. I think she was in it for a couple of hours before I finally dried her off so she didn't become hypothermic. The water was cold and they were in the shade with a breeze blowing. Since she has NO sensitivity to cold (unless it's something cold touching her teeth or tongue) she would have just kept on playing all day. I couldn't find her swimming suit so she just played in a swim diaper, and one of her cousins was a little intimidated by her tubes. She was a little afraid to get in the pool with Raya until her mom explained things to her. Then she was fine with it and the kids had a great time. I'm SO grateful to have plenty of people to be around who don't make a big deal about Raya's tube. I'm glad that my other kids have had the experience of living with her and her tube so that they will grow up thinking that things like that are no big deal and will be more kind to people who have visible physical challenges like feeding tubes, wheelchairs, glasses, leg braces, etc. because of their experiences with Raya. Or at least I hope they will. :)
Before we left, I wondered if I would notice a big difference with Raya missing several therapy appointments. She has DEFINITELY been acting different since we left home but it's hard to tell which of her behaviors is because of missing therapy and which behaviors are just from being in unfamiliar environments. One definite difference that is from missing therapy is her lack of interest in food. She has still been asking for bites, but the longer we are away from home, the less she asks for things like crackers & cheerios, and when she does "eat" them, she is swallowing less and less, and spitting out almost everything again. Today she got a piece of fuzz from her blanket in her mouth and the way she was acting, I thought she was going to gag.
I've also been doing a lot of observing. Raya has a cousin who is 1 month and 5 days older, one that is 2 weeks older, and one that is 4 months younger. If someone who didn't know any of the kids was to watch them all playing, I think they would assume that Raya was closer in age to her 16 month old cousin than to the two who are 2 weeks & 1 month older. Her movements aren't as steady as the older two, she still holds her arms in a high guard position a lot when she walks, and just overall, she seems closer to the 16 month old than the other two. I'm not saying it's a good or bad thing, it's just been interesting to observe. In a way, it's reassuring to me that the therapy we're doing with her does have a purpose and we're not just wasting our time. The older cousins are a little ahead of her communication-wise too, but that's one of those areas where they make leaps & bounds at this age so it's hard to tell where she'll be in a couple weeks or a month.
Anyway, we have had SO much fun and we are LOVING the break from the blistering heat in Arizona. I think Raya's about ready to go back home and sleep in her own bed and start up with her therapies again, but we really have had a great trip.

Tuesday, July 19, 2011

Just might have to move to Boise...

After the most efficient and pleasant Walgreen's compounded prescription refill process we've ever had, I'm finding myself contemplating moving to Boise JUST so we can keep refilling prescriptions there. The fabulous weather might have something to do with it too. :)

Saturday, July 16, 2011

Road Trippin'

Well, we survived the 13 hour day of driving. The kids and I left at 7:00 Thursday morning (yes, just me and the kids, Daddy has to teach his class at the college until next Thursday) and drove ALLLLLLLL day and got to my grandparents' house exactly 13 hours later. That was in spite of having to make an extra diaper changing stop, several stops for road construction, and car trouble that turned out to be a result of one of the things the mechanic we took the car to to get it ready for the trip did to it. Oops.
Anyway, I'm happy to report that I didn't have to use my vomit clean-up kit that I put in the car before we left. There was no vomiting the entire way here from any of the 4 kids so I was thrilled. Raya did great pretty much the whole drive. She got upset about 3/4 of the way when I went to strap her back in the carseat but she got over it pretty quickly. For the last 15 minutes of the drive, she kept repeating, "Dee-OUT!" and was very excited when she got to get out of the car at great-grandma's house. She's been busy getting into everything since then. :)

She's been doing really well playing with all the other kids and getting crashed into and climbing up & down the porch steps. I'm really glad Donny remembered to get the high chair packed in the car for me (it's the kind that straps on to a regular chair). She LOVES to sit in it and did for about 90 minutes last night during the picnic dinner in the yard. She just sat & played with crackers and begged for water, which she dumped all down the front of herself.
She has had a little trouble sensory-wise though. She's not used to being around so many people for such a long time, and compounded with not getting a nap and staying up until 11:30, she had a huge meltdown tonight. Probably one of the worst ones she's had. She cried for an hour or more and nothing I did helped. All the stuff that usually helps her, like chewing on a cold wet washcloth or sitting in her high chair or going outside, just made her mad. I ended up taking her for a little drive and that was exactly what she needed to calm down. After that, she was just fine the rest of the evening. Her GI system has been a little off. I think sitting in the car for the whole day on Thursday did a number on her motility. She's still asking for crackers a lot but there's not much of anything going down her throat since we've been here. She'll take a bite or two of whatever she's got and then spit it out or beg me to wipe it off her tongue.
Anyway, overall she's doing really well and traveled better than I anticipated. Tomorrow we'll head out on the next leg of the trip.

Friday, July 8, 2011

Here to stay for now

Pureed oatmeal, anyone?
After much contemplation and my husband reminding me that he was leaving town for the weekend on Thursday, we decided to keep the GJ tube for a little bit longer. (remember how last time he went out of town, she got admitted to the hospital the next day & stayed for 2 weeks?) We're going to keep the GJ until we get back from our road trip at the end of July. Kind of like how last summer, we decided to keep her NG tube for 2 extra months rather than have her G tube surgery a week before we left for a 2-days-of-driving-in-each-direction road trip. We're pretty good at troubleshooting what we've already got so we'll just stick to it for now. We'll rock that boat when we get back into town so that if there's a problem, we can have it taken care of at our own hospital with our own doctors. Just to be on the safe side, I've already located the hospital where we're going that could replace her GJ if it had a problem or came out, and a compounding pharmacy so I can get the refill of her medication that has to be refilled every 2 weeks. The next step is adding up how many cans of formula we'll need for the amount of time we'll be gone and trying to pack enough stuff in case of emergency without going overboard. :)
In other news, the food saga continues. One of Raya's new favorite words is "eat" and "bee-bowt" (seatbelt), both of which she says repeatedly whenever she sees her high chair. Even at 3:45 yesterday morning. She had woken us up screaming hysterically because her bed was saturated with 4 hours' worth of formula and bile thanks to the med port popping open on her extension tube. I had it taped shut nice & tightly but the extension got kinked and instead of setting off the pump alarm, the pressure popped the medicine port open, tape & all. After that, she was disoriented & obviously confused about what time it was, and would NOT go back to bed. It didn't matter what I did, she just kept crying & screaming.
Finally, since I didn't want anybody else joining us (well, besides Kaida who was already laying on the couch) I took her outside. As usual, she immediately stopped crying & laid her head on my shoulder. The unfortunate part was that even at 3:30 in the morning, it was still 86 degrees outside and was really muggy, so holding a sweaty toddler and sandwiching her fleece blanket between us was not a viable option. I thought she'd be ok when we went back in since she was calm but no, it started up again as soon as I reached for the door handle. Her high chair was sitting right next to the door so as soon as she saw it, she started reaching for it and saying, "eat! eat! bee-bowt!" (still crying, of course) so I finally gave up and put her in the chair and gave her a couple of Ritz crackers to gnaw on. Every 20 minutes or so, she'd start making her little noise to tell me she wanted more. I didn't dare go back to sleep because I didn't want her to choke on the crackers, so instead I sat on the couch from 4am-6am watching Hoarders on Netflix while she mutilated/smashed/played with/ate crackers.
At 6:00, I decided she'd had enough and hosed her off and put her back to bed. I flushed her G tube to make sure there wasn't any cracker gunk in it too. Then at 8:00 when she got up again, I drained her stomach & 45ml of yellow liquified cracker remnants came out. Delayed gastric emptying, anyone?
She's kind of gotten the hang of eating Ritz crackers (and by that I mean biting off little chunks until the entire cracker is in her mouth and then keeping her mouth closed until the saliva slowly carries it down her throat a little at a time until it's gone or mostly gone, and then repeating). The process takes her about 10-15 minutes per cracker though. At that rate, it would take her about 14 hours to consume her required 900 calories per day. Not that Ritz crackers are nutritionally complete. I guess my point is, just because she is now willing to stuff crackers in her mouth & swallow what she can, it will still take a lot of work & progress before she can eat enough to ditch the tube.
I think this whole process of teaching an exclusively tube-fed child to eat is more like climbing a whole mountain range (in dense fog) than just climbing a mountain. We just climbed Mt. Willingness-to-put-food-in-mouth and now we're on to Mt. Learning-what-to-do-with-it-next. Or at least that's what we think we're climbing next. :) That's where the fog part comes in. We think we can see where we're supposed to go next but sometimes the fog gets so thick that we can't see clearly and we wander around for a while before we make a breakthrough into a clear spot and can get back on track. (Did I mention that tangents and lame analogies are my forte'?)

Tuesday, July 5, 2011

The weekend

Here's a rundown of Raya's weekend:
Thursday- drained her stomach for 4 hrs total, 245ml
Friday-3 hours total, 175ml
Saturday- 7 hrs total, 205ml
Sunday- 3 hrs total, 250ml
Monday- 1 hour 20min, 180ml
Tuesday so far- about 6 hours, 135ml (I drained it all while she was asleep though and she doesn't usually have much coming out when she's asleep)
Not so sure if the EES has been worth it. I don't know if it's really helped reduce the amount of drainage at all or if it's just because I've kept her clamped more so the bile has been going through her instead. I've been draining her for about 30 minutes after she wakes up in the morning and then for a few minutes at a time throughout the day if she starts to act really crabby when it's not naptime or really hyper (either can be indicator that something's off with her GI system). I also drain her for a few minutes before I let her eat because the food stays in her stomach for at least 2-3 hours afterward so I don't drain her for a long time after she eats. She goes to bed around 7pm (sometimes earlier) and if we unclamp the G tube after she's asleep in the evening, nothing will come out. There have been nights where I've gone a long time before she went to bed without draining her and I'm afraid to let her go all night without draining her, so I've woken her up so that her stomach can drain a little. We've tried leaving the tube clamped all night long and she doesn't vomit in the morning like she always used to but she wakes up around 5:30 or 6:00 and is really crabby until she gets her stomach drained. When we let it drain for part of the night (4-5 hours) she wakes up later and is happy when she wakes up. Usually if we go for 4-5 hours without draining her during the day, we unclamp the tube and get 60-80ml out within 5 minutes. 
We were supposed to start feeding therapy today with our second FT but she decided that since she would only be seeing us once before we go out of town for a couple weeks, she'd rather just wait until we get back to start. I was a little bummed/annoyed but at least it meant that I didn't have to clean my kitchen just so Raya could mess it up at feeding therapy. :)
Since she's been tolerating eating pasty-textured food, I put some rice & black beans in the blender yesterday and gave it to her. She won't let me feed her (or help her, or be within 5 feet of her while she tries to feed herself) so she ended up with rice all over her. When I washed her off, everywhere that rice had been on her skin was bright red. None of the other food she's smeared all over herself this week has done that to her. She still didn't throw up this morning but she woke up fussy & uncomfortable, which isn't her usual.

I've always thought she had a problem with rice. One of her worst projectile vomiting incidents that I will never forget happened the weekend before she got her feeding tube. Her doctor had told me to add rice cereal to her milk over the weekend to see if we could add a few calories and get her to gain some weight. As soon as we started doing that, the projectile vomiting got worse. The evening after the first visit with the GI doctor, we went to a cousin's wedding reception. I had fed Raya a bottle before we went to the reception and she had gone to sleep. I was holding her and talking to some relatives and she just started erupting with more force than I had ever seen. It went all over me and all over her and I couldnt believe how much was coming out of her. As soon as she stopped vomiting, she went pale and limp and went back to sleep. That was scary for me because she had never done that. She was ok but we were both covered in puke and I knew right then that she was not going to gain weight by Monday and that we would be spending some time at the hospital the next week.
A few months later we had done a swallow study and determined that she needed to have her liquids thickened in order to swallow them safely without aspirating. I didn't have any of the thickener so the speech therapist had said I could try rice cereal again and see if she was even going to take liquids by mouth at that point since she hadn't in about 6 weeks. Once again, after drinking the formula+rice cereal, she puked more than normal. Then she decided to completely boycott drinking anything and I was a little relieved since it was more trouble than it was worth at that point trying to get her to. When we had allergy testing done a couple months ago, the doctor had me choose the foods I wanted to test her on and so rice was first on my list. Unfortunately one of her meds threw it off & the tests were all negative, even the positive control.
Well, that turned out longer than I planned. I guess I was just a little surprised at how much her skin seemed to react to the rice. I don't think she swallowed as much of that as she did of the beans last week. They weren't as sticky & were easier to swallow. I might blend up some more rice and put some on her skin again just to see if the same thing happens. If it does, then I'm officially declaring her allergic to rice.
We didn't hear from the doctor's office today about swapping out her GJ tube for a G tube. I'm not too surprised though since she was out of town for 2 weeks and the office was closed yesterday, and then Tuesday is her endoscopy day so she probably wasn't at the office today anyway. I would imagine her nurse is nice & busy after the long weekend. Maybe they'll forget and we can just leave things alone until we get back from our road trip. So that Raya doesn't puke in the car the whole time we're driving. Like she did last year. I can guarantee that Peptamen puke would stink up my car a whole lot more than the Neocate puke did last year. The end.

Saturday, July 2, 2011

More eating

We always kind of figured it would go like this. As long as there was vomiting, there would be strong food/oral aversions, and as long as there were aversions, there would be no eating. We hoped that we'd be able to get the vomiting under control, she would overcome her aversions, and then she'd start eating. The part we weren't sure about was the time frame.
Since it took 18 months for her to stop vomiting, I expected it to take a while longer for her to gain interest in food and then a while longer for her to actually eat. She has really surprised me with her eagerness to try things. Once she had gone for a week or two without throwing up, her interest in food started to increase almost exponentially. It was like a light bulb went on for her and she suddenly realized that all that stuff everybody else puts in their mouths really isn't so bad after all. She is doing extremely well considering that it wasn't more than 2 or 3 months ago that she couldn't even handle having crumbs in her mouth without gagging and throwing up. It's funny because the first time that I saw her willingly pick up a spoonful of food, a little part of me thought, "Ok, she's eating so the hard part is over now." The rest of me was thinking, "Wow, we have SUCH a long way to go. I had no idea how hard this would be."
I used to dread the phase where my babies were learning to eat and learning to feed themselves. It's so messy and it can be so frustrating, especially when they get to the independent phase where they HAVE to do it themselves. Eventually they all figured it out.
Looking back, I feel silly that I ever complained about that, even if it was only to myself. If I had known that the alternative was a 19 month old who skipped past the "I don't know I have the option to not let Mommy feed me" phase and went straight to the "I'm going to feed myself even if I don't know how to chew, use my tongue to move food around in my mouth, or swallow it" phase. I never knew there could be so many phases to learning how to eat. She's been a great biter for a couple months now. As soon as she learned to spit things out so that she didn't have to gag & vomit to get unwanted objects out of her mouth, she started biting off chunks of food. Sometimes she would let them sit in her mouth for a little bit and sometimes she would let them fall out or spit them out as soon as she bit them off. Either way, it was a good thing.
Learning to swallow water was a huge stepping stone for her. It was a huge "aha moment" when she realized that having water in her mouth felt good. It was encouraging for us to FINALLY see her actually beg us to put something in her mouth. (she does it ALL THE TIME now :) She went for 13 1/2 months without having a drink of anything. She struggled with it a little bit then, and she struggles with it now too. Because she doesn't know what to do with her tongue, most of the water that goes into her mouth squirts back out all over both of us. This is actually kind of a good thing because it means that she is protecting her airway, but she's a little hypervigilant about it and she closes off her whole throat so the water can't go down at all. :)
Then she miraculously decided that she likes beans. Watching her put spoonful after spoonful of beans in her mouth was amazing. I was a little dumbfounded by it, actually. And a little mad at her for being so stubborn for so long and then just suddenly getting over it. (don't judge, just being honest here) But mostly, I was excited. She did fairly well with the beans. They were a great consistency for her, especially since she insisted on feeding herself. (she has not yet mastered the art of using the spoon right side up)
Here is a list of food that Raya has more or less consumed this week:
*1/4 C refried beans x 4 (swallowed most of what went in)
*about 8 half pretzel rods (kind of a mystery where a lot of this ended up but most of it was in her chair & on the floor)
*about 6 Ritz crackers (she spit most of them out)
*almost 1/4 C of oatmeal (pureed in blender with apple juice and a little bit of jam for flavor, she swallowed a lot of this)
*2 little cracker/cookie things from an airplane (these dissolved easily and she swallowed almost all of it)

I don't really have an accurate way of measuring how much actually went in and stayed in but now that she's making an effort to eat, we've realized that she has very little understanding of how she's supposed to do it. When you feed a 6 month old, they learn that one bite goes in, they move it to the back of their mouth with their tongue, and then they swallow it. Since she skipped that phase, she doesn't understand that. She takes little bites at a time over & over until her mouth is so packed full that she can't put anymore in without some falling out. Sometimes, especially when she's "eating" a cracker (I feel like eating is the wrong word...) she will keep biting off more and more of the cracker and then just spit out the whole glob and start over. She doesn't actually swallow any of it.
She did the same thing when I gave her oatmeal tonight. I was really excited that she liked the oatmeal. It was just a packet of plain unflavored oatmeal that I cooked in the microwave with water and then put in the blender with just enough apple juice to make it the nice pasty texture that she tolerates and a little jam to give it some flavor. She liked it but she had a really hard time swallowing it so I think she ended up wearing most of it.
So we will keep working. She will keep begging for food, I will keep giving it to her, she will keep packing the food in her mouth, I will keep digging it out with my finger when her mouth gets too full and she refuses to spit it out, and eventually she will learn how to do it right. When that will happen is anybody's guess but we will take it whenever it comes, whether it's in a month or a year or 2.
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