Another medication that can cause more vomiting!!!

Auggie had been taking cyproheptadine for a few weeks at an increased dose and his gagging and vomiting became worse.  A simple question to the doctor, "do you think that the medication is thickening his mucous and therefore making it harder for him to eat?"  "It could be" was the response.  Bingo!!  Why don't we talk about these possible side effects before we place the child on the medication?  It all makes sense now.  Cyproheptadine is an antihistamine which like all meds has side effect.... including appetite stimulant (the reason it was prescribed to my son), but also a lesser known one (at least according to his doctor who had never experienced this before) VOMITING!!!

Celiac test is negative!!

After 6 weeks of eating food containing gluten we had Auggie tested for celiac disease.  It came back negative!  Wow, another relief but again we're stumped as we search for answers.  Why did this baby have such trouble eating as an infant and why does he eat so little now?

Medical Update: Allergist diagnosed him with milk protein enterocolitis

After seeing an allergist at Stanford Auggie was diagnosed with milk protein enterocolitis.  The diagnosis is based on my anecdotes and observations - no medical test available to diagnose it.  So, we are staying off milk but have been experimenting with cheese.  We will do a blood test for celiac disease in the coming weeks.  We've introduced gluten and so far he seems to be tolerating it - it's hard to tell though because the quantities he's consuming are quite small.  He has come down with Roseola again so we had a few days of minimal eating which was very depressing. We hope to get back on track soon as he is teeny tiny - he just hit 20 pounds before he got sick.

TSA letter from Doctor

Here's the letter that our doctor wrote for us to present to TSA if we have any problems:

"To whom it may concern,
xxx is a 16 month old child with feeding difficulties and poor weight gain.  Currently he is doing very well on rice milk.  Due to his feeding intolerance to other formulas, it is most important that he continues on the rice milk.  Please permit his family to bring rice milk on the flight".

Developmental Update: Auggie is walking at 16.5 months!!

After all that Auggie has been through we're very proud of him!!!!  He has been preparing for this for quite a while so his balance is already quite good and any falls tend to be gentle and slow. 

Medical Update: Echocardiogram shows improvement!!

Finally some really good news.  Auggie had an echocardiagram last week and it showed that the valve of concern has grown as he has grown.  This means that he probably won't need to have any heart procedures done.  Early on the doctor was monitoring him to see if he needed to have a balloon inserted to help expand the valve and therefore improve blood flow, luckily he took a conservative wait and see approach and it paid off!  Auggie still has mild pulmonary valvar stenosis as the flaps that open up between the two chambers are still a bit chunky and don't open up all he way, but this is something he can live perfectly well with.  As the doctor said, Auggie should be able to participate in all sports but he might not become an olympic athlete - that's fine with me :)

Preparing to fly to Europe

Traveling with children is complicated and stressful, but flying with a toddler who has food allergies opens up a whole new can of worms.  I have to bring ALL his food and figure out a way to keep his beverages either hot or cold during our journey.  I'm also going to ask his doctor for a TSA letter stating his medical condition so that I might be hassled less about the quantities of rice drink I have to bring on board!  On the plus side we don't think that Auggie has a life-threatening allergy to anything which must be a lot more stressful when flying, but on the other hand, consuming something he does not tolerate could make him very sick and dangerously dehydrated.  I'll post an update in a few weeks with all my latest "gear" and a sample of the TSA letter! 

Inexplicable vomitting

Auggie is happy and growing but has started gagging himself to the point of vomitting.  We're trying to figure out if it's behavioral or if there is something else going on.  He has been congested and a couple of times has gagged when eating chunkier food, but tonight he made himself gag at bedtime and threw up his dinner :(  Just when things were seemingly going better we hit another snag.....

Allergic reaction to cow's milk?

Auggie vomited last night, developed a fever and was fatigued all day today.  After a very mucousy poop we decided to call the doctor and started questioning whether we were seeing an allergic reaction to dairy.  These slow reacting allergies can take days to appear, so it is possible that although yesterday was day #3 drinking cow's milk, he could have had a recation to it as we have slowly been increasing the ratio of cow's milk in his "formula".  All dairy is out for now as we wait for him to recover.....:(  we get so bummed out when he's sick because we work so hard to get those calories into his body. 

Auggie is on an appetite stimulant

We don't know why Auggie doesn't eat very much, but we now have him on periactin which is an anti-histamine but also acts as an appetite stimulant.  I mix it in with his yogurt.  He's been getting 1ml twice a day, but I might try increasing it to three times a day. He has increased the amount of solids he eats by about 50% and his drinking by about 20%, so it seems to be working. Now we're just waiting for the extra calories to translate into extra ounces.

"He looks different, but he's cute"

We know that Auggie looks different and our very honest acquaintance was just saying what others only dare think.  We also know that he is a very smart boy and that his "condition" or "syndrome" or whatever it may be is probably not going to affect his intellectual capacity or his quality of life.  He has suffered some developmental delay while on the feeding tube, but we think he will catch up. At 15 months he is still not walking but he is a very fast crawler and is very agile and comfortable with his movements.  We have a follow-up with the cardiologist in July, the geneticist in August and the GI doctor in August as well. In the meantime it's a full time job trying to make sure that he consumes enough calories.  His weight has stalled but we hope that the recent addition of dairy to his diet will help.  He is weighed every day and every teaspoon of food he eats is recorded and tracked.  He still has feeding therapy mostly to help him drink more.  He still will not drink any large amounts on his own - we use Mr. Juice Bear for kefir and his "formula" is still delivered in a baby bottle.  His verbal skills are improving.  He has about 10 words, the most recent one being "hi" while waving wildly!!  He really is a cute boy with a fun personality.

So far, he's tolerating dairy really well!!

Auggie now eats cow's milk yogurt and kefir and I mix heavy cream and grated cheese into just about everything I can.  He loves cheesy rice - kind of like Mac 'n cheese but with rice.  I tried giving him milk to drink but he seemed to balk at the taste (or did I?  I'm not a big fan of milk).  It's hard not to let your own preferences and biases get in the way.  He's still not gaining very much weight, but he's very active and happy so I guess he's doing okay...burning too many calories.....

Introducing dairy

We've decided to introduce dairy into Auggie's diet even though we suspect that he might have some type of allergy or intolerance.  We started by giving him yogurt - first a couple of teaspoons and then after a few days we were up to 1-2 ounces.  He did not have any problems with it except getting used to the taste - it's more tart than his coconut milk yogurt. We now mix the two 50/50 and some days he will eat it.  After about 1 week of eating yogurt we started giving him grated cheese - organic monterey jack - and so far he is tolerating it well.  I mixed the cheese with some rice, broccoli and coconut oil.  I have to say that we're really surprised to discover that he tolerates dairy so well.. Next we'll try butter and then heavy cream and whole milk. The reason for introducing dairy in steps is that yogurt and cheese contain less lactose than milk, so they're usually better tolerated than milk. I will be so excited if he tolerates milk and cream as I know that he'll love eating whipped cream and it would be a great source of calories.  He is very skinny right now and we're running out of ideas on how to fatten him up....

Development - Auggie sips 50% on his own!!

Auggie has clearly decided that he is going to be in charge.  He has slowed down his bottle time and has picked up drinking on his own.  It seems like a change occurred overnight where he just woke up and knew that he had to drink - something clicked and now he gets it!  He likes sipping coconut kefir from his Mr. Juice Bear but will also sip rice milk from a Nuby bottle with straw or just take sips of water from my glass or his own doidy cup.  I recommend all three products although the Nuby Flip-it straw sipper can be hard to sip from as it requires a strong suck - this can be overcome by cutting a hole into the silicone straw (which we did and it works great).

Doidy, Mr. Juice Bear, Nuby Flip-it Cup

Results: RAST allergy testing

Auggie had an appointment with his GI doctor last week who thought that despite very slow weight gain, he looked good.  He is still not even on the charts for weight and he is following his curve for length at 9th percentile.  He's a skinny little guy but quite strong!  While we were there he also had some blood drawn for a standard CBC which showed nothing wrong - iron, albumin, hemoglobins and his total blood count looked great.  We also had them do a standard IgE food panel which came up negative. So, now we know that he does not have fast reacting allergies when it comes to the most allergenic foods, but we suspect that he has slow reacting allergies that are not easily diagnosed.  The next step is a meeting with another allergist and careful trial and error with food.  We tried oats and 4 hours later Auggie had mucousy stools with blood threads.  We're trying yogurt tomorrow because although we suspect some sort of dairy allergy, yogurt is often more easily tolerated as it is more easily digested than milk. 

Allergy testing and the return of silent reflux?

We found out on Thursday that Auggie is probably allergic to eggs.  He had a skin prick test for 20 common allergens and only eggs turned out positive.  The test is unreliable though and only shows if there is a topical skin reaction to certain foods and does not show positive if the gut is affected (which is most often the case with Auggie).  We see his GI doctor this coming Thursday.  Even though he's developing well, he does not seem to be growing so we're trying to pack the calories in as much as we can - we wake him up to give him his last bottle.  His silent reflux also seems to have come back in conjunction with the exposure to eggs, so he is back on baby zantac.  The next step is to have a RAST test done on his blood to check for allergies that way (can sometimes show more), but again it does not show if the gut is affected....Apparently allergies and reflux is a hidden epidemic that is difficult to treat because it's so hard to diagnose.  Something we need to keep in mind. 

Other than that, Auggie is stacking blocks, saying 2 word phrases - yesterday he pointed to a car going by and said "brum brum, dar dar" we think he is saying the Swedish word for there when he says "dar".  He is sleeping much better now - almost sleeping through every night and we have moved him into his own room.

Food allergies: Mango?

We think that Auggie had a reaction to mango.  I gave him a big chunk, peel and all, to munch on and lo and behold a few hours later he had hives on his wrists and eczema all over his body :(     I did find out that mango contains urushiol, the same sustance found in poison ivy!  Mango is out for now.  We will have Auggie tested for allergies in May - we'll probably do skin prick tests to rule out specific foods that we suspect such as dairy, soy, mango and others.

Even a daytrip gets complicated

We took the boys to the beach today and discovered that Liam is very picky about having his bottle at the right temperature.  We had ordered a travel bottle warmer but it did not arrive in time for this excursion. Our morning at the beach was cut short because we had to find a place to warm his bottle.  It was time to leave the beach anyway :)  All in all though it went smoothly and he ate all his other food without any problems.  We just need more practice eating and drinking away from home.....

Those dreaded food allergies

Auggie has been doing so well eating just about anything I dare give him. It's hard to resist giving him something when he sees it on my plate and just has to have it - sushi yesterday!!  I have to stop and remind myself that we are probably dealing with multiple food allergies that have yet to be confirmed.  Yesterday he started getting a little blotchy after drinking some vanilla rice drink, I didn't think much of it as he often gets blotchy after napping and rubbing his face.  So, I gave him some again today - by this evening he had swollen, red, itchy wrists, eczema on his back and red blotches on his face that extended from his mouth to his eyes.  He was also very cranky and did not want to eat.....I immediately scanned the ingredients on the rice drink and found that the only thing in the rice drink that his regular hemp drink does not have is "sunflower oil and/or safflower oil and/or canola oil".  He 's been eating canola oil for weeks so that's not it.  Could he be allergic to sunflower or safflower oil??? What else could it be??  We'll cut out the rice drink for now and see if his skin improves. 

So long feeding tube!!!!

Yay!!!!!!  That's an understatement, HOOOOOORRRRAYYYYYYYYYYYYYYYY!!  The feeding tube is out. Auggie is now drinking and eating really well on his own.  The feeding tube was in for 9 months and it took 54 days to wean him completely.   Phew!!  It's an anti-climactic ending to a long nightmare because he has been making a little bit of progress every day.  We had great support from his GI doctor, a speech (feeding) therapist who came to our house 2-3 times per week and the North Bay Regional Center and Napa Infant Program who helped us pay for transportation costs to Stanford, a therapist to keep us sane, and a nurse to give us some respite. Thank you to everyone who was invloved in this amazing transformation.  We knew the little guy could do it - he is a true fighter!!!

Food discoveries: Coconut milk, yogurt and kefir

We suspect that Auggie has milk protein allergies, which is what led us down the feeding tube path to begin with.  This means that cow's milk is out and possibly also soy milk.  One of the greatest discoveries for us has been the coconut products made by So Delicious - yogurt and kefir - we add protein powder to both.  Full fat coconut milk is a great addition to purees.  We also like a vanilla flavored hemp drink made by Trader Joe's. It contains vitamins and calcium and 3 grams of protein per ounce.  We add a teaspoon of rice protein powder, 2 tablespoons of rice cereal and 1 teaspoon of canola oil and heat it up for a delicious calorie packed beverage that is more like a meal in itself.  Auggie sips this beverage from a bottle with a nipple that we've cut a larger hole into.  So far he seems to like the flavor....we'll see how tomorrow goes.

How we pump calories into his food

Every calorie counts when your kid is not even on the growth charts for weight.  In order to get the most bang for the buck we make his purees by mixing his veggies and fruits with full fat delicious coconut milk.  His sweet potatoes are something ridiculous like 50 calories per ounce!  We also use canola oil in his food and we add rice protein powder to just about everything he eats. We track every single bite and record it in a spreadsheet that gets sent to his nutritionst at Stanford.  It's a full time job makng sure that he gets 15-16 grams of protein, 500mg of calcium and 100 calories per kilo every day!!!

Tube Weaning: Holding Pattern

We are so close to pulling the tube out once and for all.  He eats really well now and only gets water through his tube at night.  He does not drink very well so he still needs the tube for hydration.  We've pulled his tube out twice now and both times he has come down with a fever and we've had to put it back in.  He usually drinks about 4-5 ounces per day but today we had a major breakthrough when he drank 9 ounces of a hemp protein drink.  His tube will stay in until we see a consistent pattern in his drinking...hopefully only a week or so....

Tube Weaning: Update

It's been a while since I've posted because we've hit status quo.  We reduced Auggie's calories to zero, took the tube out last Sunday and then he got sick.  He developed a high fever and we had no choice but to put the tube back in on Monday.  After 4 days of fever he broke out - Roseola!  So, now he's eating about 75% of what he was doing during his best days and we give him 140ml of formula and 150 of pedialyte at night.  He's drinking less and less very day it seems.  It's very frustrating that we are making no progress with his drinking skills/desire....his speech therapist is back on Monday after a 2 week break due to Auggie's illness, I hope she has some suggestions.  We are giving him avocadoes again as he needs the calories and he LOVES them.  We have not noticed the eczema again so it could have been from the chicken he tried a few days before he had avocado.  His weight is stable at 18 pounds (7% weight loss overall) and he has been pooping regularly which is great. 

Tube Weaning: Day 13

Auggie was really hungry this morning when he woke up - he had a big breakfast and then demanded my bowl and ate my cereal.  He drank 30 ml from his Mr. Juice Bear but then was done for the day (drinking any larger amounts).  He sipped from a juice box for the first time - drinking from a straw seems to be the way to go with him.  He happily ate pretty much everything today but I had to stop giving him avocados when I noticed an eczema rash on his neck and wrists - he has latex sensitivities so he may have issues with avocados and bananas as well - we'll take a break from them for now to see if his skin improves.  Tonight he's just getting some water and tomorrow morning we plan on taking the tube out.....hopefully he'll start drinking more.

Tube Weaning: Day 12

Auggie continues to eat and eat and eat.  He is taking more and more calories by eating his purees, but he is still not drinking very much. However, today he did start drinking neocate splash from his Mr. Juice Bear.  He is getting a little bit of pedialyte tonight and then I think it's time to say goodbye to his tube!!!  It has been an amazing journey....more news to come soon.

Tube Weaning: Day 11

What a different kid we saw today!!  There were no periods of gloominess.  I made sure to feed him every 2 hours and he beat his record. He had lamb for the first time today, plenty of avocado and he consumed almost as many calories by mouth as he has been getting via tube before.  He also beat his old drinking record, taking 2.5 oz. in 10 minutes.  We're seeing a steady increase in his consumption now every day. The key for him now is fluids and protein.  We have to figure out how to get him to drink a protein rich beverage.  Our options are limited due to milk protein allergies but we will try neocate splash tomorrow and if that doesn't work we might have to experiment with soy milk.  Tonight he gets some pedialyte but no formula. Looking forward to tomorrow.  The house is a mess as I spend most of my time preparing food and feeding and washing Auggie. 

Tube Weaning: Day 10

What a day!!!  Today Auggie beat his record from yesterday and had 23 tablespoons of purees throughout the day, but the most amazing thing was when he guzzled 2 oz. of rice cereal drink in 7 minutes!  He only had 20% of his usual calories overnight and then pedialtye to hydrate him.  His hunger slowly built up during the day and breakfast was his smallest meal.  He never got too cranky or gloomy.  Tonight I'm giving him just 70ml of formula and then about 300ml of pedialtye.  Tomorrow we're working on his drinking skills and trying some neocate splash.  The doctor says he doesn't need to drink a "milk" as long as he gets enough protein and calcium from the foods he eats - that's great news, because I don't know what he would be able to drink.  We discovered coconut "yogurt" today - it's packed with calories at 30 per oz and Auggie seems to love it.  Time to get some sleep.....

Tube Weaning: Day 9

Major breakthrough!!!  Auggie devoured half an avocado this afternoon along with several tablespoons of peas, cauliflower and sweet potatoes.  He was glum and distant when he woke up from his afternoon nap and when his speech therapist first came over, but once he started eating he quickly perked up.  We are so proud of the little guy, now we just need to continue with the same volume of solids and get him to take more fluids.  He took 70ml of his rice cereal drink today and several small sips of water and diluted white grape juice.  We're cutting his calories again tonight - he'll get just 20% of his usual amount...we're hopeful that we'll have another good day tomorrow.

Tube Weaning: Day 8

We seem to be on the verge of a breakthrough but it's frustrating for everyone.  Auggie seemed anxious, hungry and a bit frantic today when he was presented with food.  He insisted on grabbing a tangerine from me and then bit into it really hard and made a grunting sound (very caveman like).  He almost took a big chunk out of it.  Again, he was not too interested in taking a spoon from me but he fed himself a few times, ate off my finger and sucked food from his nuk brush.  He took slightly less today from his bottle but more solids than yesterday.  Another new development today was that he started taking small sips of water from his nuby sippy cup.  His calories via tube were reduced by 60% overnight. I gave him some pedialyte during the day to calm him.  He's having good pee diapers so he's staying hydrated even though I'm only giving him 400ml of fluids via his tube.  His speech therapist comes tomorrow so I hope he makes some progress.  He has already lost about 3.5% of his starting weight (we're allowing a weight drop of 10% before we change course). 

Tube Weaning: Day 7

Day 7 was the best yet.  Auggie continues to drink his rice cereal drink; at times just small sips but other times he pulls the bottle towards him and takes big gulps.  He had a total of 90ml today - I  was very impressed.  His intake of solids has also increased - took about 40ml of sweet potatoes, peas and rice cereal mixed with pureed prunes.  He gagged a bit on a baby mum-mum but recovered pretty quickly.  I've been too worried about sabotaging his eating experience with another vomiting episode that I've tried to stay away from giving him any pieces of anything.  With his limited eating/drinking experience he is still at the level of a 4 month old so I guess we just need to take it slow with the textures. His mood has been pretty good despite the caloric reduction although he does tend to get pretty cranky and needier in the evenings.  All in all though, he's been a real trouper.  Tonight he gets just 40% of his normal calories we'll see if he eats more tomorrow as a result.

Tube Weaning: Day 6

He took 60ml of liquid rice cereal from a bottle today!!!! Yay, he can do it.  The best thing is that he took 30ml in 5 minutes and the remainder in several sessions during the day.  He only opened his mouth once for a spoon of puree but even that's progress. I am however feeling the pressure of this wean starting to build and my body is starting to shut down from the constant feeding, preping, cooking and cleaning in addition to taking care of a very needy 4 year old. Tomorrow is another 50% day and I hope that my sinus headache and sore throat does not turn into a full blown cold.  It would be devastating for Auggie to get sick at this point and we would probably have to change plans.  Lots of hand washing for me.  Cross your fingers for us!!

Tube Weaning: Day 5

Auggie had 350ml of formula and 50ml water overnight.   I had turned his food off at 5 AM and thought for sure that he would be hungry by 8 AM - with every meal I keep thinking this is it, we're going to see a breakthrough...it didn't happen, but he did feed himself some rice cereal with prunes.  At lunch he again fed himself some butternut squash and rice cereal but he did not open his mouth when I tried feeding him -  he tolerated being swiped though.  He sucked on some tangerines.  His fontanelle seemed slightly sunken and he hadn't had a pee diaper in 4 hours so I gave him 30ml of water via tube.  After his nap he seemed much better - he found a rice puff on the floor and ate it!!! This really surprised me. Later when his speech therapist came over he took a couple more rice puffs - coughed a bit but swallowed and was okay.  When he tried a piece of tangerine however, instead of sucking as he had previously done, he took a bite and coughed, gagged and vomited.  After recovering in my arms he sat back down and fed himself some sweet potatoes.  After his bath he was cranky and seemed tired and hungry - took 10ml of rice formula from a bottle - yay, finally some progress....he got very cranky that evening, I started his feed at 6 PM and finally he went to sleep early at 6:30.  We'll have to start getting used to a cranky baby, because he is going to start feeling even more hunger soon.....tomorrow is another day at 50% of his calories.

Tube Weaning: Day 4

Day 4 is over - he received 430 ml of formula overnight and 20ml of water during the day.  Tonight he is getting 350ml of formula and 50ml of water putting him at 50% of his usual calories.  He did a few more things today - took a spoon covered in pureed yams to his mouth several times, only at 5 PM would he open his mouth for me once when I presented him with a spoonful of food.  He took a few sips of his formula from his nuby bottle and a few sips of water earlier in the day. I had decided that there was no way he would take his formula via mouth (it is vile!!), but his speech therapist thought we might as well try it and lo and behold he seems okay with it!!  It would be great if he could learn to drink his formula so that we wouldn't have to worry about a replacement.  Again he played with his Mr. Juice Bear and chewed on tangerine slices and avocado.  He has already lost 5 oz. so I hope he starts eating soon. 

Tube Weaning: Day 3

I was too tired last night to post about the day's progress. Yesterday I decreased his overnight formula by another 10%, so he had 480ml of 24 calorie neocate overnight (turned it off at 8 AM).  The whole day was much the same - he did not open his mouth for the spoon but he did not mind having his lips swiped with some food.  I gave him an apple chunk to mouth and for the first time he actually took a tiny bite and gagged (of course, I hadn't peeled the darn thing because I didn't expect him to take a bite!).  Later that day he took tiny sips of water from a small bottle with a newborn nipple.  He took it with him in his bath and had a good time playing with it on his own.  He enjoys taking a peeled tangerine and mashing it up and then sucking on the slices - we did that twice yesterday.  I also gave him a few slices of peeled tangerines from a can that he seemed to like.  He also was very interested in Mr. Juice Bear.  We tried some purees as well: peas, butternut squash, and rice cereal with prunes. He also chewed on a cucumber spear - again taking a tiny bite and gaging when he got a surprise piece in his mouth - I think I'll take a break from from undissolvable solids for a while.  I've tried snap pea crisps with him several times but he quickly pushes them off his tray.  If anything he is getting used to having some different textures and liquids of various kinds around him - I guess we made some progress....we''ll see what happens today.

Tube Weaning: Day 2

I expected a lot more today.  His calories were reduced by another 12%, so he received 24% less today than his usual.  I turned his food off at 10 AM.  At 1 PM I offered him peas, butternut squash soup, snap pea crisps, rice cereal, juice drink, formula and he was not really interested but tolerated having his lips swiped a few times.  At 3:30 his speech therapist came over again and we offered the same foods plus some apple chunks, blueberries, and carrot/apple mash-up and again no real interest although he did play around with his honey bear for a while as we watched his internal struggle: I want it but I'm afraid - he would pull it towards him, play with the straw, making smacking sounds, get the straw up to his face and then retreat.  We hope that in a few days this will turn into the bottle he chooses to take some sips from.  Tomorrow we reduce by 10%, for a total cumulative reduction of 34% - let's see what he does....

Tube Weaning: Day 1

We had a pretty good start today.  Auggie had 616 ml of formula (a 12% reduction).  He has been on continuous feeds for the most part since that is what he tolerates best, so we let him go continuous today to keep him comfortable.  Feeding started at 5:30 PM yesterday and we turned his food off at 1:15 PM today.  At 3:30 his speech therapist came over and he seemed very interested in eating.  He took his honey bear in his mouth and had a few squirts of thickened veggie/fruit juice.  The liquids are thickened with Thick-It, a corn based product.  He also had a few tastes of juice from his avent bottle and his rice cereal drink - I boil 2 tablespoons of rice cereal with 4 oz. water and 1/4 teaspoon agave syrup until it's smooth and then let it cool.  He did not directly open his mouth to the peas we offered him but he also didn't turn away and he tolerated being swiped.  The big breakthrough today was when he picked up a tiny piece of rice cake and when he bit into it he looked so surprised but he proceeded to swallow it and did not even gag!!!  This was a major step for him.  Tomorrow I plan on reducing his feeds by another 12% so I plan on turning his food off at 10 AM. 

Sippy Cups, Bottles and Spoons

small bottle with soothie nipple, nuby silicone, nuby sippy cup, tilty, avent, infatrainer, honey bear

We've spent a small fortune on special bottles and sippy cups hoping that a miracle will occur.  So far, there is no clear favorite, but Auggie does seem to like the Honey Bear.  Nuby makes a nice silicone bottle that can be squeezed to facilitate bottle feeding a baby with a weak suck.  We also have a nuby sippy cup which should be good in a few months - there is no valve so it does require some sucking to get the liquid out.  The Infatrainer (clear with yellow lid) is an overpriced beaker in my opinion - it does not work very well for us.  Avent's standard sippy cup with handles is a good one and then the standard small bottle that he can easily hold on to with the soothie newborn nipple seems to work well for him. We like the idea of the Tilty with smoothie lid and we will try it in months to come.  We like the nuk brush for feeding solids and the duo spoon is a nice idea although he does not seem to like it as much - it's a little big and probably intimidating.

sassy, nuk brush, IKEA, munchkin, ?, duo spoon

Tube weaning - we start January 10th

We have our doctor's approval to do a full blown wean - meaning that we will be reducing his tube feeds by 10% daily for five days, then staying at 50% for 3-5 days and then reducing another 10% daily until we get to 0%.  We hope to see an increase in oral intake during the 50% days.   I will post more about our progress later.  We've based our weaning plan on the Graz model used at the Children's Hospital in Graz, Austria.