Nils learns to eat

Spring is here!

2005-04-14T13:37:00.000-07:00

Oops, I see I've lapsed almost a month from my last entry. If there is a long pause in my posts, it's usually because Nils and I have plateaued in our progress. He even seemed to shift a bit backwards from his huge gains in early March. It was frustrating, but I guess not unusual. Nils is still eating at every meal, just not with the gusto that he was back then.

Then, at the end of March, poor Nils caught a 2nd tummy bug. This one was a bit different than the first one, more chronic and less acute. But it put Nils off any food just the same. I know how he felt because like clockwork I caught the bug two days later. Agh! No appetite for days. After about 5 frustrating days of start-stop eating, I finally just put Nils on a pure Pedialyte diet for a day, and low and behold by the end of the day he was begging for food.

He's back to eating by mouth at every meal and trying different tastes. Since he lost more weight from the 2nd bug, I've been focusing on getting his weight back up which means that he's not often hungry.

This week I think I'll resume doing the every 2nd-3rd day starvation day (delaying his Pediasure for a couple extra hours to get his interest up for food). He tends to get less Pediasure on these days, so I don't want to do it too often, but it is a great way to get him to eat more food by mouth.

It's a struggle to balance trying to achieve weight gain with Pediasure with trying to get him to eat by mouth. Obviously, it would seem that reducing the volume of food by tube will help his eating by mouth. However, our little Nils is really little, and too much weight loss is not such a good thing for him. Of course, I have his gastroentrology doctors closely monitoring his weight gain and they tend make me feel guilty if he's not gaining the expected weight. I try to reassure them that he's been pretty healthy and his energy level is great. But those reports don't seem to hold up to the weight charts. They want to see him take in more volume that I get into him each day. But when would he be hungry, I argue! It's hard to convince a child to eat if they're not hungry. And, it seems to me, that it's not a good idea in the long run to train a child to eat when they're not hungry. We'll see. His next Gastro appt is in just over a week. Then I can breathe a sigh of relief and get on with our program.

Nils is still fond of olive tapenade (made with Kalmata olives) and bananas and cream cheese. I've also introduced vanilla ice cream, and he licks that right up. Very encouraging! He's drinking water from his sippy cup at every meal, but most times it's just a few sips.

Fig newtons...yum!

2005-03-17T11:31:00.000-08:00

I have been trying to get more food into Nils' mouth, but he's pretty stubborn. He gets mad when he sees that spoon coming at him, even if he likes whats on it. So, yesterday I gave him his food and just let him eat it if he wanted. It was a sure favorite...mayonnaise and olive tapenade. Yup, he ate all of it, and asked for more! I was getting more when I think one of the little olive chunks took him off guard and he gagged then proceeded to really gag. Poor guy. It was great though to see him so interested!

Today I was having a fig newton and I thought maybe he'd like one, too, while I got together some food. yup, he loved it...went through the whole cookie. He seemed to especially like the fig part.

Other big news is that he's walking by himself and he knows what he's doing. He's done it over and over again. Next, I'm looking forward to seeing him walk on his own without me around...you know, unprompted, his own idea.

Letting me feed him

2005-03-07T11:29:00.000-08:00

Today Nils took an early lunch because....he was hungry! Amazing. For so long I never thought Nils would know what it was like to be hungry. However, he does now. His metabolism must have increased quite a bit recently because he's eating so much more (by this, I'm talking about digesting his pediasure which is a vanilla shake drink he gets through his g-tube). In fact, he woke up MAD yesterday morning at about 4:15 am. Agh! Didn't know what was up and tried in vain to get him to settle down. Finally, sat him down to some food. He calmed right down and fell back asleep. Of course the rest of the house was awake by then for the day :-).

Last night about 2:30 am I awoke to his crying out. I went into the room and there he was standing and rattling the side of the crib. I didn't waste any time and sat him down to some graham crackers while I fed him some pediasure. He went right back to sleep (as did I!). Well, it seems as if his last meal of the day isn't sticking with him. We're going to have to get him to eat something with more substance.

Well, today at lunch, I mixed up some mashed banana with yogurt and he let me spoon it into his mouth! His tongue is still working in protection mode because he tries to push the food out with his tongue, but he kept opening his mouth for the food. I added some rice cereal to the mixture to make it a bit more pasty, and he kept accepting it. I'm sure that some went down his throat because he had a lot in his mouth. He didn't gag, either! In between bites he'd grab his graham cracker or potato stick and give it a bite or chew.

This is one of the first times that he let me keep giving him a spoon full of food over and over again. Encouraging!

I'm going to try to figure out how to post pictures on the site to show Nils eating :-). We took some cute ones of him at the table eating his humus with black olives.

Juice Box

2005-03-06T12:37:00.000-08:00

Nils is keeping up his interest in food. In fact, he starting to become pretty bold in approaching strangers for food. We were at the play area at the nearby mall, and he crawled up to the woman sitting next to me, who was eating some cheesecake, and indicated that he wanted some to eat, too. The woman wondered if he could have some. Of course, I said, no, but it's amazing that he's that interested!

I tried some canned french onion soup on our little guy yesterday for lunch and he seemed to enjoy it. He even let me dropper some into his mouth. We thought this might be a more efficient way to get greater volumes into his mouth. He only let me try a few times before he wanted to chew on the dropper himself.

I bought some small juice boxes a while ago to try on Nils. We thought they might be a good way to get liquid into his mouth since the juice comes out of the straw so easily. About a month ago he didn't have much interest in the juice box except to take the straw in and out of the box. But yesterday and today it's all different. He puts the straw from the juice box into his mouth and let me squeeze some juice into his mouth. He swallows, and he also lets a lot dibble out of his mouth. However, he doesn't gag or sputter when I squeeze the juice in.

Using his molars!

2005-03-04T12:13:00.000-08:00

Well, Nils is still getting excited about eating about 5 times a day (or whenever someone near him is eating :-)). This morning I was a bit frustrated because he tried to eat a bit of croissant at the Bagel Shop and ended up spitting up the rest of his breakfast. Agh! We had gone out for the morning and I didn't have adequate change of clothes for him, so he had to spend the next couple of hours in soggy pants (and it was raining outside!). Oh well, he didn't seem to mind.

However, by lunchtime things had changed. He was really hungry. He spooned his hummus with olive into his mouth and ate most of it (some drooling out, of course) and he liked eating this veggie potato sticks. In fact, that's when I saw him consciously bite down on the sticks with his molars! Then he swallowed what he chewed. This is big becuase until now I've only really seen him bite and chew at the front of him mouth using his four front teeth. This is common for kids with oral aversion because they're trying to keep everything away from the back of their throat. It was great to see him use his molars for eating and not been freaked out!

Yesterday he enjoyed jam for the first time and seemed to lick it off my toast. I think this little guy is developing a sweet tooth. He saw me eating a Mint Girl Scout cookie and asked for it...gave it a few gnawing tastes....not bad :-).

Things are changing!

2005-03-02T14:46:00.000-08:00

OK, it's been way too long. Before I write too much about where we've been, I must start writing about where we are.

Nils had pretty bad stomach flu last week and couldn't tolerate his pediasure at all. So, I was only giving him pedialyte and lots of it. Well, he rebounded out of that illness a different boy. He started asking for food and actually trying to eat it...swallow it, I mean. Not just bite it and spit it out, but swallow what he could tolerate.

He also begs for food...he'll crawl into the kitchen and point at the snack cupboard for us to get out his favorite snacks (#1 is graham cracker stix, #2 smart puffs and pretzels). If he can find scraps on the floor (yes, I'm afraid we've been somewhat lax about making sure our floor is spotless for our little crawler), he'll grab them like a hard won prize!

Whereas before we could never get a bib around his neck, he gladly lets us put even the most uncomfortable plastic bib on if that mean that he's going to get some food. He'll sit at the table for 10-20 minutes making his way every bit of food on his placemat. He still will spit out what might be uncertain to him, but he loves to smack and swallow what he can.

What does he like right now...we're trying everything. Nils likes hummus, black olive but not caper. He's OK with cottage cheese but I haven't seen him go after it. He likes peanut butter...sucked it off the toast this morning. He likes buttered toast, but more the crust than the inside because he can bite it. He likes playing with banana, he took a few tastes. We'll have to try bananas again if only to have him squish it for fun. Wasn't thrilled by applesauce.

Nils doesn't gag anymore when he eats stuff. Now if anyone puts something in his mouth, he might gag, but if he puts it in there, he deals with it. When he forgets to swallow and things build up, he'll cough a couple times and most likely sneeze, but then swallow and get on with eating. In the past he would gag and try to clear everything out. Not anymore. At lunch today when he was having some graham crackers with peanut butter, I think he got a bit to much caught in his throat and he panicked a bit more than I'd seen him do in days. BUT he still didn't gag! He coughed a bit more and reached for a burp cloth like he might want to clean up a spit up...but didn't spit up!

I usaully start him on his pediasure about 10-15mintues into his feeding. It's a piece of cake nowadays. I just pour it in...no more easing it in and watching to see if he's tolerating it. It's almost as if, a mental click has gone off in his head and he knows he's eating and everything stays down. When he'd done (he tells us) we take everything away, wash him up, and let him play with his puzzles at his place for a little while til we finish our meals. Then he can get down and play with his sister. No more babying his stomach and hoping that he won't spit up while just moving around. Unbelievable!

We spend maybe 5-6 meals at the table but that's OK...he likes it and the fact that he likes eating so much is just the best thing ever!

Thanksgiving for Nils!

2004-11-29T21:16:00.000-08:00

Little Nils may be part Chinese. Two of his best ever food tasting episodes happened during/after our Thanksgiving road trip to San Diego. First there was our emergency stop at the PF Chang's in San Fernando valley (some mall near 101 and 405). Lucky for Nils Sally thought he would enjoy playing with Brown rice covered in Mongolian Beef sauce. Nils really enjoyed the flavor of the sauce. He kept putting pieces of rice in his mouth and sucking the sauce. Since he hasn't quite got his swallowing down, most of his siliva drooled down his shirt but he was a happy little beef sauce boy.

Then the next night (our first night home after the trip), sally served up a mean dish of Hilary's Tofu with Bean Sauce (not her sauce). Nils really enjoyed this sauce too! Lots of drippings onto his shirt and he must have swallowed some of the tofu too.

Little Nils sure had a nice trip to San Diego. First he really enjoyed the stop at the In/Out burger. We think the colors of red and white really made him happy. Nils Thanksgiving was pretty good too...although the dinner for him was not eventful. The first night in San Diego, Meghan nearly rolled over Nils during her restless sleep. The second night, Nils somehow ended up a little bit under the desk (sleep crawling)....ok he only moved a little bit but just enough to be heading toward the desk.

Nils just keeps crawling better and better. Same with his walking/cruising. He is a lot of fun. Last night in the bath tub, Nils crawled down to the end of the tub to try to take a toy back from Meghan!

Nils went to the zoo the day after Thanksgiving. We aren't sure how much he liked the animals but he had a really fun day. He got to walk around a lot because his short aunt Suzanne ( much closer to the ground than most of us) let him walk around a lot!!! Grandma Nanna got Nils his first Zoo sweatshirt too.

So Nils got to spend 20 hours round trip in our car. On the way down to San Diego (9 hours) we stopped 3 times. We pushed him a bit longer in between the stops but not too bad. On the way back home (11.5 hours) we stopped just once at PF Chang's. The other stops for Gas little Nils didn't get out. He cried a lot for a way before and after we stopped at PFC but finally he fell asleep once we headed into Santa Barbara.

OK, time to sleep. Nils had an 8 ounce feed tonight. Little boy's tummy is getting bigger.

Feediing himself with tiny bites

2004-11-23T13:13:00.000-08:00

Over the past few weeks Nils has been more interested in feeding himself than letting me feed him. This is good and difficult. It's difficult because (and I'm sure he's realized this) he determines how much to put in his mouth, which isn't very much. I've decided to just focus on presenting him with different finger foods so that he tried to feed himself as often as possible. He likes the saltiness of pretzels, but doesn't seem too interested in Ritz crackers. He likes soft graham crackers which surprised me since he hasn't really shown an interest in sweet things except licorice. His interest in licorice as waned a bit.

I've realized that I have to switch around his eating choices. If I give him something too frequently, he loses interest in it. Hmmm.

He's the most intested in feeding himself when we are eating with him, either me, Meghan or all three of us (Daddy, too). In fact, he wants exactly what is in our hands. That's OK, it's easy to share with him :-). He doesn't take much in his mouth, but he does bring whatever it is to his mouth as if he's going to eat it. He'll scrape it on his teeth and then smack his lips together. However, he tends to try to spit while swallowing. Although this seems counterproductive, he is swallowing which is a great response to putting something in his mouth. Maybe he'll not spit sometimes and keep it in.

If I feed him, he doesn't swallow and sometimes just cries. So I can't see this as being productive. I'm thinking that if I back off of me feeding him, I'll be able to return to feeding him in a little while, with some new variation of smooth food :-).

We are also working on strengthening his jaws by getting him to bite down on anything and pulling. He's pretty good with his front teeth. I was using my finger on his side gums (where the molars haven't come through) but he'd rather have my finger right in the middle....OUCH! I've been using his rubber stick with rubber bristles and he likes to bite on that so it works well once he gets used to it. He really doesn't have much gag reflex left which is great.

Nils is really understanding direction lately. If I tell him to bring some food to his mouth he does! I gave him his sippy cup yesterday and he immediately took it by the handles and brought it to his mouth. He did this over and over. He wasn't getting too much into his mouth but he did enjoy putting the mouthpiece in his mouth. He really loved it when Meghan put the sippy cup in his mouth. She would tilt it up a little high and I'm sure he was getting some water into his mouth. He made a little face but it didn't deter him from letting Meghan do it again. We'll keep the sippy cup at his place at every meal and hopefully he'll continue to get used to it.

I tried feeding him in the bathtub this weekend since he seems OK about eating soap from his fingers. But nope, still didn't like me putting food in his mouth.

OK, gotta get ready to drive down to San Diego for Thanksgiving. I'll blog when we get back

Our Little man's strength!!!

2004-11-09T20:41:00.000-08:00

Sally just reminded me that I nearly fainted when we had Nils' amnio done ages ago. I forgot about that. Tonight when I came home, I enjoyed cold left overs sitting on the floor watching Nils play at the train table.

Get this: Tonight he crawled after his toy train...ok only 2 feet but they were nice feet!

Get this even more: Then Nils crawled to the train table and put his hands up on the table and finally pulled himself standing up to the table!

Wow that was cool. This weekend I've got to shoot a little video of our man.

Sally took Nils today to get his RSV shot but other than the shot, he had a good doc's appointment. He didn't cry when he was placed on the scale or on the paper of the examination table (both normal cry situations).

I sure love this little man!

good night. Mark

Biscotti!

2004-11-08T18:29:00.000-08:00

Well today at the mall, I bought a biscotti for myself to go with my hot chocolate. I gave Nils a piece of the biscotti while I looked for a place to sit. When I next looked, there he was nibbling on the biscotti! He seems to be keyed into when we are going to eat something and he wants to try, too. He got a few crumbs into his mouth and tried to spit some out, but I think he swallowed some...but no gagging! Afterwards, when I was cleaning up the trash, he wanted to hang on to the biscotti paper bag and proceeded to put his finger in his mouth like he was eating it out of the bag!

He tried eating at each meal-time, and was kind of successful. He definitely is trying whatever I put in front of him when he's in his high chair (even if it's a bit of stuf left over from the night before!).

Posting when there's good news

2004-11-07T13:54:00.000-08:00

I guess I am really guilty of only posting when I want to share some good news. I tried to get myself to post in these past few weeks, but I just wasn't motivated. Nils didn't seem to be progressing on eating and swallowing his food. He was allowing me to put more food in his mouth, but he started to avoid swallowing (as I'd seen him do a couple of months ago). It was disheartening.

However, just recently a few encouraging things have started to happen. I realized that I if I fed him his food while watching his Baby Eistein video, he's swallow without much problem. I also started giving him a milder food to eat: rice cereal, milk, melted butter, a pinch of salt and flavoring like coconut or almond. He's pretty accepting of this mixture and will let it stay in his mouth. He puts his fingers in his mouth while he has this food in his mouth and swallows. However, I tend to have better luck when he is distracted by his video.

The second encouraging thing is that he likes Twizzlers red licorice. I gave him a piece to chew on and he picked right up on it. I guess the texture is perfect for him to bite on with his teeth, but nothing crumbles off (like his teething biscuits). But he does get licorice juice during the chewing so he is swallowing some taste. He'll chew on the licorice without distraction! He's gotten better with his teething biscuits, too, especially the Earth's Best biscuits which are harder and less likely to crumble in big pieces in his mouth.

The third great thing and this has only started in the past few days, is that he's feeding himself at the table! Last night I made a yummy potato hash with smoked salmon, capers and onions and mashed some up for him. I put a little pile in front of Nils and he started eating it with his fingers. At first he pick some up with one or two fingers and bring his fingers to his face, but then he started to put his fingers in his mouth. He made a little bit of a face when he tasted it, but he kept going back for more! Today at lunch I gave him the same thing but made it a bit more pureed with some milk and he went right at it. I didn't push him by trying to feed him myself. I just let him do all the feeding with his little finger. It is such a huge step! I really believe, that when I put everyone's plate down at meal time, he looks at me expectantly wondering where his food is. He's really cute, too, when he brings his fingers to his mouth... he smacks his lips like he's giving a kiss and swallows immediately.

I'd been noticing that he's been mimicking us when we're eating. So now it looks like he's advanced his mimicking to actually putting food into his mouth. It's just great!

Nils has really gotten better about not spitting up, too. I think he's spit up only once in the last three or four days. Incredible. We still baby his feeds so that he's not dealing with a lot of mucous or air, but it seems to be paying off. I wonder if he's forgetting the response to spit-up. We'll see!

We went to see his pulmonologist at UCSF two weeks ago. His lungs are looking much better. There are still some chronic changes that may be there his whole life, but compared to last February his lungs look great. He had a bit of inflammation from a small cold, so his pulmonologist, Dr Cropp, decided that it might be beneficial for Nils to be on inhaled steroids throughout the winter. He is gettng pulmicort and albuterol through a nebulizer/mask twice a day. The first time I tried the treatment on Nils he was awake and it was way too difficult. So now we give him his inhalation treatment while he's asleep in the morning/mid-day and then at night. I think it is helping Nils with his spitting up...perhaps the mucous in his lungs is moving more easily with the treatments so that he doesn't have to cough it up and thus he's not so upset.

So, that's it for now. I'll try to be better about posting!

More good eating!

2004-10-11T21:15:00.000-07:00

Two posts in one day...I'm on a roll (or rather, Nils is on a roll!). Tonight before dinner I gave Nils a yummy mixture of chicken broth, butter, olive oil, rice cereal and yogurt. He was really good about letting me put it in his mouth. He'd turn away at times, but sometimes he openned his mouth and laughed. He was slow to swallow and liked to keep his mouth open so that some drooled. I didn't pay attention to that and just wiped away any drool. I think he might be getting the idea that the cloth wipes away food because he took the cloth a few times and put it in his mouth as if to wipe out his mouth :-).

He did swallow though and didn't make too much of a big deal about it. I think he gagged once, but not very big, and he was back letting my finger or the spoon in his mouth afterwards. I worked with him for about 10 minutes and I'd say again I may have gotten just over a teaspoon in and then he drooled some out. But the cool thing was when I was washing out his bowl, Nils started playing with the spoon that I'd left on the table and put it in his mouth! Maybe a sign that he wanted more? I'll have to try that mixture again tomorrow.

He took his feed right afterwards with no problem.

His reflux has been a bit of a roller coaster lately. The first couple of days back from our vacation it was almost like he didn't have a reflux problem. He only had at most one spit up a day. Then by midweek his reflux seemed to get worse and I could tell he was uncomfortable in between feeds and his spit-ups increased. Saturday was the worse day with several big spits, but we also had company, so he might have been aggravated by the higher than usual energy in the house (Mom's nerves?). Sunday, however, was incredible...not one spit-up. It was a great day!

Today was pretty good, with just one spit-up (but it was big) in the late morning. We'll see how the rest of the week is...may be pretty good since we don't have any appts scheduled. Last week we had a trip to Stanford to see the oncologist. Always a stressful visit, even if it is an uneventful visit (great news!)

Eating spoonfuls!

2004-10-11T14:56:00.000-07:00

Well, maybe that is a slight exaggeration :-). However, we are trying to get Nils to eat about 1 TABLESPOON of food each day. We're working up to it. Today before his late lunchtime feed, I gave Nils small spoonfuls of cottage cheese with his lime juice/olive oil dressing. He seems to really like lime juice/olive oil with cumin so I've been giving him some of that with rice cereal or, like today, with cottage cheese. I put the cottage cheese in the food grinder so he didn't have to deal with the large curds. He did pretty well. He took all into his mouth and even thought it was a game...complete with laughing when it went in. He wasn't too eager to swallow though, and a lot drooled out of his mouth. However, he did swallow some, and even though he made a face, he DID NOT GAG! I'd say I was able to get about 1 teaspoon into him and maybe he swallowed a third of that. Pretty good.

Last night he had some potato smears and played with chard, but he really liked it when his daddy gave him some licks of the roasted chicken juice. It was yummy and so nice to see him enjoy something so yummy. Hmmm. I'm not sure we saved any of the chicken juices (i.e. chicken fat :-)). He definitely still prefers savory foods. If I give him something sweet, like maple syrup from yesterdays pancakes, he goes right into a gag.

Nils and I met with Natalie Ward, his oral therapist, last week and she was encouraged by his progress. She, too, noticed that he's noticeably stronger physically. She spent some of the time playing with him with his verbal skills. She got him to make sounds to ask for a favorite car. We'll have to keep working on holding out his toys until he uses voice to ask for them. He is making car sounds when he makes his cars roll along the ground. He's talking a lot more and is starting to experiment more with different sounds.

The day we went to see Natalie, Nils was suffering more than usual with is reflux, so he didn't respond as well to oral stim or his food. But she could see that he was getting much more comfortable with oral stimulation. She wants to see Nils more regularly which is great. We'll be back to see her at the end of the month.

We're back!

2004-10-03T21:53:00.000-07:00

We had a wonderful vacation on San Juan Island. I see I must have taken a few days before we left, too, since I haven't posted for almost two weeks!

Well, Nils is doing really well! He's playing with his food every meal time and whenever his sister eats snacks. For so long, when I'd put food in front of him he'd just look at it and ignore it. Now he really plays with it...squishing it in his fingers and picking at it. He even has tasted it for himself when his hand goes to his mouth.

The first week of vacation seemed to be more of the same plateau kind of feeling with Nils. Honestly, I wasn't working very much with him. We were all just enjoying being away. Also, during the travel days, I was more preoccupied with just getting his Pediasure into him so the whole oral stimulation stuff was put on the back burner.

Well, Nils pretty much had to get pretty dramatic about his desires for me to notice (duh!). Everytime he was within a good arms reach of food that we were eating he was all over it. Not taking it to his mouth, but squishing it in his fingers and playing with it. It didn't seem to matter if the food was still hot from the stove.

Just a few days before the end of our vacation, I had an amazing dream of seeing Nils eat macaroni and cheese (Nils oldest cousin Ella eats mac and cheese ALL THE TIME). I realized when I woke up that I had never visualized Nils eating food through his mouth. It was a really cool dream. So that morning I started giving him the same food that we were eating at the same time. Scrambled eggs were a hit. He played and played with them and I think a bit went to his mouth.

If Nils does panic from the taste or food in his mouth, he usually looks to us with a worried face and may indicate that he wants to gag. All we have to do is break out in happy drumming on the table and he joins in with the biggest smile ever and usually forgets what he was concerned about. Meghan has lots of fun, too!

I also started letting him feed me with snacks (like tortilla chips). He loves doing that. The night we returned from our Seattle/San Juan trip, we went to Gordon Biersh for dinner. Nils was given some mashed potatoes, red cabbage and string vegetables on a small plate. He played with everything. Then he grabbed at my dinner plate which had a savory apple sauce. This sauce made it to his mouth via his own hands. He made some faces, but went back for more playing. The really fun part of the evening was when Meghan finished her dinner, and went to play with Nils. He proceeded to feed Meghan his mashed potatoes with his hands. Over and over he gave her mashed potatoes. She was more than willing to let him feed her. It was great. I really think he's starting to associate food play with eating, too.

Last night we gave him some buffalo stroganoff for dinner. He played with it as usual. While he was playing we gave him smears of the sour cream sauce that holds it all together. Oh boy, he like that. Even though it was tricky getting him to swallow the larger smears, he did. Lots of table drumming helped, too.

This morning at breakfast he wasn't too thrilled with our eggs. First thing in the morning might be kind of hard for food interest. He usually had a hard time with his feeds at that time and I wouldn't be surprised if he doesn't have much of an appetite. For snack though, Meghan had banana and I gave Nils some mashed banana. He took some smears into his mouth pretty well. I was surprised because I don't think I've ever had much luck with banana. It's important that Meghan is eating the same thing. It's a game to him, then. He definitely starts smacking his lips when Meghan starts eating something at the table. Sometimes, I almost have to do a double take because it looks like he's eating something.

Tonight he had some mashed sweet potatoes and the dressing from our salad. He really liked the salad dressing (fresh lime juice, olive oil and cumin). After I gave some to him on his lips with my finger, he grabbed my finger and brought it all the way into his mouth (and tried to bite it .... ouch!). He did this almost every time I gave him a taste of dressing. He didn't do it with the sweet potatoes, unless they had the dressing on them. Pretty amazing!

Ever since we returned on Friday, Nils' reflux seems to have gotton tons better. He is hardly spitting up at all and seems to tolerate his feeds just fine without too much work from the one who is feeding him. He's been really active, too. He's noticeably stronger.

Our vacation was good for all of us!

Plateau

2004-09-21T11:49:00.000-07:00

I can't believe it's been over a week since I last posted. I think it's partly because I feel I've plateaued with Nils for a while. We don't seem to be making much progress. He's getting really good at letting me press down on his tongue. However, there are seemingly lots of times when he doesn't want me to go near his mouth. I persevere and usually can get in, without him gagging, but it's not very fun.

I need to bring snake to the dinner table. Nils is back to sucking on it before he goes to bed (for a while there he was enjoying his cars as nighttime soothers.

I've also been a bit preoccupied with our impending vacation. Can't wait! We're flying up to Seattle to visit my brother and his family and spend a week at their house on the San Juan Islands. So far we're all healthy and that's wonderful. We'll just have to stay healthy during the flight.

Pears with Meghan!

2004-09-13T10:19:00.000-07:00

Yesterday just before Nils' mid-morning snack, I sat Nils and Meghan at the table for snack. I just started feeding them baby pears from a jar with the same spoon. First Nils then Megahn. Nils thought it was great fun and although he tried to avoid the spoon, he didn't make a big fuss. I'm sure he swallowed some pears. Of course, Meghan is such a great eating buddy. She eagerly ate all that I fed her (even though she could feed herself, I wanted the feeding to be a game for Nils). I think he had one gag where he tried to clear his throat of pear, but we went right back at it. We'll have to try this more often with other foods.

He's really getting used to his biter biscuits. In fact just now, he bit off a piece of biscuit, which surprised him (and me!). Although the biscuits could be a choking hazard, he's pretty good at protecting his throat from most everything. It dissolved pretty quickly so he didn't cough up the big bit .

Once I force my finger into his mouth I can go pretty far back on his tongue. He makes a face when I get too far back, but he doesn't gag! Nils is doing so well.

He's really reduced his spit-ups. It's great! He also hasn't been waking up at night for a feed. I'm not going to worry about it. I'll try to give him a bit more food at each feed, but he's doing so well that I can only think that he's getting enough.

We had a great weekend. It's been so nice to be able to take him out and about without him spitting up. We're still very cautious, but so far so good!

A sigh of relief

2004-09-10T16:36:00.000-07:00

Nils had a GI follow-up appointment at Stanford yesterday. He weighed in at 19 lbs 13.5 oz! Whooooeeee! The "skinny index" (where they use a formula of his height and weight...probably a BMI) shows that he's just right at 50% (above 50% would mean that he's overweight and under 50% would mean that he's underweight (or skinny)). Yippee! We can all breathe a little easier now.

I've started a new approach (for me!) to his feedings. I'm really trying to feed him when he's hungry. It's still hard to tell when he might be hungry, but I try to wait until I see him getting cranky or less active. The big change is that I only give him a regular size feed before he goes to bed (key here is BEFORE...I'm trying not to feed him when he's asleep so that he learns about getting his tummy filled). Then I get up in the night to give him another feeding if he wakes up hungry. With his last feed around 8 pm, he's been waking up around 1-2 am wimpering which I take to mean that he's hungry. Sure enough, as soon as I give him some food he falls back into a deep peaceful sleep with smiles usually! It's so basic, but so wonderful, that food can satisfy him. For way too long we have been trying to be ahead of his feedings so that he gains weight. It took me a long time to try to break away from the rigid schedule and let Nils tell me when to feed him.

Nils is spitting up a lot less these last few days. I can tell he's still refluxing, but he seems to control it really well on his own.

We had another great session with the biscuit today. Nils really went at rubbing it on his teeth. Lots of biscuit dissolved in his mouth and I was worried that he was going to to a big gag when he realized what he'd done. When it came time to swallow he did do a little gag, but nothing good hard. He wasn't too keen about putting the biscuit back into this mouth, but he didn't seem to be totally avoiding it either. I couldn't believe how he was gnawing on the biscuit.

I gave him some cottage cheese and some more of the fire-roasted eggplant hummus at lunch time. He seemed to like participating in lunch, and the cottage cheese made him smack his lips a few times. No gagging, but lots of mess. I also gave him a cracker which he played around with. When I rubbed the cracker on his lower teeth, he was a bit taken aback and did a small gag, but then laughed. Not sure if he may have realized that we all were eating crackers.

We're heading into the weekend. The heat finally broke and the days are only up in the high 80's. I can handle this!

We're back at it

2004-09-08T13:31:00.000-07:00

Somehow Labor Day weekend was a really long weekend. I was doing pretty well handling both Nils and his sister Meghan while their Daddy was in Germany last week, but then the days got away from me.

Nils was having some challenging days with his feeds (spitting up) so I was distracted with feedings more than food play. I continued with the oral stim, but not as intensive as usual. I feel bad about that. I'm not sure why I lapsed in working with him. I'd like to say that I was distracted with my houseguests. However, my mom and sister visited in order to help me...so that's not a good excuse. Hmmm. It has been incredibly hot and all energy levels are down.

Anyways, Nils is doing well and just had a great session with his biter biscuit. For a couple of days after the first great biscuit session, he didn't want anything to do with the biscuit. But just now, while one of his favorite videos was playing, he held the biscuit in his mouth and rubbed it on his teeth, took it out and put it back in THREE times. He seemed to have a little difficulty swallowing, but only a mild grimace...no gagging and no resistance to swallowing. He liked holding it near his mouth, too.

At lunch I gave him some fire-roasted eggplant hummus and a little sun-dried tomato hummus. He swallowed, but was unhappy. Last night I gave him a slice of lemon at dinner and he smacked and swallowed. We were at a restaurant, so there many happy distractions.

Nils has been putting lots of toys in his mouth. The building blocks are a favorite as well as horsey (he's forgiven him, I guess) as well as a few small cars that reside in his bed.

Nils weighed in at 19 lbs 11 oz and 30 inches long at his cardoiology appt today.

Horsey with Alfredo

2004-09-02T00:30:00.000-07:00

I have to try to record even uneventful days, so that I can see that not every post needs to report accomplishments. Not all days progress forwards...in fact, some days we go backwards. Patience, patience. I can't really say that we progressed with Nils' eating yesterday, however, I do think he progressed in his whole body strength.

Nils' torso looks stronger and he's sitting straighter. He's also reaching way far over to get things, sometimes so far that he topples forward. We're working on getting into a sitting position, but that's going to take arm strength, too. Last night I played an hour with him before he went to sleep and he was really pushing himself. It was great.

I think one way that I can tell whether he's not quite hungry for a feed is how receptive he is to oral stimulation. Yesterday afternoon, I thought it was time for a feed. While I was starting to give him some food, I played with his mouth. He did not like me being near his mouth at all. Then, when I took a little bit of pediasure and put it on his lips, that was the last straw. He projectile vomited what had been hanging out in his tummy. I think I'll try to feel out the situation before I begin feeding. If he is receptive to oral stimulation and food play, then it's time for feeding. In hindsight, this plan seems all too obvious. Sometimes (well, a lot of the time) it takes me a while to figure Nils out.

So, before his noon day feed today, he was playing great and was receptive to oral stim. I was able to get the rubber finger all the way back in his mouth (it seemed). Nils is good at retracting his tongue to protect it from being touched. However, while he was playing with his toy he kept hanging his tongue out so it was available for me to get at. I also gave him some Alfredo sauce. He doesn't like it as much as simple white sauce, but he does smack it every time I put it on his lips. He was mouthing his horsey at the same time, so I put some on horsey's nose. Nils was a bit surprised to taste something on the nose and made a little stink about it. Nils then put horsey aside...almost as if his dear horsey had betrayed him. I thought he might respond to food on his beloved toys that way, but if I keep doing it he'll get used to it...and I think his love for the toys will eventually override the disappointment :-) (I hope).

Hmmmm....Biter Biscuits!

2004-08-31T16:23:00.000-07:00

Just when I thought I wasn't making headway, Nils got me! I forced a Gerber Biter Biscuit into his mouth and scraped it along his lower teeth before this afternoon's feed. He wasn't happy, but he wasn't gagging either. Well, just as he started watching his farm animals video, I gently guided the biscuit into his mouth where his fingers were hanging out. He grabbed on to it and started rubbing it on his lower teeth....no qualms either. Then he took it out after about a minute or two and....swallowed! No gagging, he swallowed again and again getting a real taste from the bits of biscuit in his mouth. He even brought it back to his mouth. Not much more nibbling, but lots of holding with both his hand. This is huge!

I did some oral stimulation before hand and I was able to get all around his mouth with the rubber brush. When I tried with just my finger to get back on his tongue, I was able to progress a bit further, but then he did gag. But it wasn't a big gag, in fact he was unfazed.

He has had a pretty good day of keeping his food down. His sister is at playgroup right now and I'm hoping to bring him around to play with the other little boy there after this feed. However, it's always a bit stressful wondering whether he'll be able to keep his food down. He seems pretty relaxed.

Gave him some hummus and cottage cheese juice at lunch. Not thrilled, but liked being a part of lunch time.

More mouth toys!

2004-08-30T12:57:00.000-07:00

After just a few days of putting any and every toy in Nils' mouth, I'm starting to see Nils bring toys to his mouth himself. He likes hard toys...like the little wooden blocks and a small truck. Most of the time it's almost like a game for Nils to have all these toys traveling to his mouth. His right front tooth is coming in so I'm sure that's a source of his chewing.

I've been trying to see how far back I can go with my finger in his mouth and it seems I can go pretty far. Nils doesn't gag. I can even play with him while he has a full stomach. That's a big improvement. For so long, I was hesitant to do mouth play with him if there was a chance that he could gag and empty his stomach.

We haven't tried too many foods. Yesterday, I gave him a bit of my Otter Pop (skinny kids popsicle) while we were over at our friends' house, but he wasn't happy with it. When something cold does touch his lips (like a popsicle) he does smack his lips together in the form of a kiss. I think this is an appropriate response since it probably excites his mouth. Before the otter pop, I gave Nils a taste of some yummy sweet and sour mustard. Well, that didn't go over well...he gagged and spit-up all over me. I'm not sure if he was reacting totally to the mustard or whether his tummy was bothering him and I just gave him reason to spit-up.

This morning when we all first woke up we played with Nils on the floor. We gently exercised our little guy by having him roll over and over on the floor and worked with him to sit up. He usually has such a hard morning with his first meal and clearing all that mucous in his tummy, that we thought maybe if he had a little physical playtime before eating, he might be able to handle the morning better. He still had a few spit-ups in which he was trying to clear the mucous, but other than that his morning was pretty good. We'll try it for a few days and see if he seems to feel better in the morning.

Nils and I went to two stores this morning and, once again, Nils didn't spit up at either one. Yippee! Maybe he's starting to learn to restrain himself in public places. That might be too much to wish for :-). Yesterday we turned his carseat around so that he faces forwards. I'm not sure if it's just because he's been feeling better, or because of the seat change, but Nils hasn't spit-up in the car since then. It would be wonderful if he was figuring out how to avoid that!

Swimming...yeah!

2004-08-28T22:13:00.000-07:00

Our little Nils loves the swimming pool. Could be because it's just a huge bathtub with his sister, and his mom and dad. Today was really hot, so we took the kids to the pool and let them splash around in our arms. So much fun for all of us!

Yesterday afternoon and evening was a bit harder on Nils than usual. I think it was a combination of me forgetting to give him his tummy medicine earlier in the day and the heat. He took a nap while we were at the restaurant (which is pretty unusual for him...usually he hates to miss out). So we didn't get a chance to let him play with his food during dinner.

I continued to put toys in his mouth all day long yesterday, and I've noticed him starting to bring toys to his mouth himself. There is a yellow square rubber teething think that he likes and tonight I saw him sucking on one of his wooden toys. He has been letting me play with his mouth while he's playing, even if he has a full stomach.

Yesterday afternoon after nap-time I put Meghan and Nils down on the floor with butcher paper and lots of chocolate pudding. Nils seemed sense something was up and spent most of the time reaching for me with his characteristic whine. Meghan really got into it and smeared the pudding all over herself, Nils and the paper. She put some to her mouth, too, but, Nils wouldn't watch her. Next time we'll play with jello. He might not be too keen on chocolate. I carried both kids directly to the bath afterwards and gave them a milky bath to clean all the pudding. Now Nils loved that. Maybe we should do food play in the bathtub.

Today was pretty busy with the swimming, a dance recital and a trip to the see the circus for his sister. Although Nils stayed home with his daddy, he didn't get much food play. Some days, just feeding Nils and trying to keep his food down takes a lot of effort.

Before dinner tonight, I gave Nils a pretzel stick to gnaw on. He liked it rubbed against his lower teeth and smacked his lips from the saltiness. He took the pretzel stick in his had and played with it for a while afterwards. I'll have to try pretzel sticks more often. I sure like them for their saltiness!

Tomorrow will be a better day since we have nothing planned and it's Sunday!

New things

2004-08-27T12:47:00.000-07:00

Yesterday I tried a Gerbers Biter Bit on Nils before his noon time feed. It's a narrow rectangle teething biscuit. I used it like my finger. As usual, it was a bit of a struggle to get it into his mouth. But once I did, he like it rubbed on his lower teeth. He even bit down on it. It crumbled a bit on his lower teeth so he tasted some of the biscuit, too. Although he did a small gag, he swallowed all that he scrapped off the biscuit. I could only play with it for a little while.

Before the next feed, I gave him some Alfredo sauce from a jar. He smacked with it. I did quite a bit of oral stimulation with the nuk finger before giving him some of the sauce so his mouth seemed a bit more ready for it. During the next feed I gave him the Alfredo sauce without doing any oral stimulation before, and he was much more resistant to tasting it. I think oral stimulation "wakes up" his mouth so that whatever follows is a bit more acceptable.

I've been putting different toys in his mouth. I gave him his hard plastic shapes and his small wooden blocks. He thought it was fun and even put a small wooden block into his mouth himself after I did. Some of the softer toys that I thought might remind him of his favorite snake antennas do nothing for him. Interesting. He liked his Fisher Price animals in his mouth, too. He's really discovering the Fisher Price Farm that sits on the train table. He still isn't cruising around the table, but he's good at sitting (on my leg) and then standing by himself.

Today, after a fun but short (due to the hot sun) time at the park, we came home and Meghan and I had raspberry popsicles. I shared mine with Nils. He wasn't thrilled, but did do a little smack every time I put the popsicle on his mouth. He kept his lips closed most of the time, but a few times he had his mouth open and had it against his teeth. I'll have to play with popsicles more often with him. I've put his teething fish in the freezer...we'll try that later this afternoon.

I gave him some Alfredo sauce at lunch. It was received OK. He didn't gag and played with all that I put on his placemat. This time I gave him the sauce WHILE he was being fed.

Tonight we're going out to dinner with Grandma B and Grandpa John. We'll bring Nils' placemats so that he can really get into the food. He loved the chopsticks last time (we're going to the same restaurant we went to on Meghan's birthday...it's a delayed celebration for Grandma B and Grandpa John).

A plan for the month

2004-08-25T21:01:00.000-07:00

We have been getting back on track. Nils has had a pretty good week as far as keeping his food down. Just the mornings are especially difficult, but then, mornings have always been pretty hard. Nils is a trooper though and doesn't let a bit of spitting up get in the way of anything :-).

Today was a pretty active day for Nils. We went to the grocery store this morning. Nils did great and thoroughly enjoyed riding around the store in the cart. No spit-ups either! I bought some cesear dressing and some alfredo sauce. I tried the cesear dressing just before his midday meal, but nope...not a good taste time. Nils had been pretty receptive to chewing on the nuk brush, but apparently didn't want any food in his mouth. I won't give up on cesear dressing just yet. Yesterday he enjoyed some melted butter with mayonnaise. It's always a favorite (well, maybe that's an exaggeration, it's always well tolerated).

This afternoon we went to see Nils' speech pathologist, Natalie Ward. She is helping us with Nils' oral aversion. We've been to see her two times now, and both times Nils has been pretty receptive. Today he was a bit more clingy and wanted to be real close to me. But he did interact with all the toys and allowed me to demonstrate how he allows my finger and the nuk brush in his mouth as well as tolerating butter/mayonnaise. Natalie was impressed by how active and interested Nils was since his last visit (which was at the end of June). Sometimes Nils' improvements are hard to see from my point of view since I'm with him all the time. It was really encouraging that she thought he was doing so well. She was also impressed with his fingers in his mouth all the time. He's still keeping his fingers right at the front of his mouth, but at least they're there...now we have to work on getting him to put them further back into his mouth. His gag reflex is still pretty far forward. We're going to try to desensitize his tongue with our fingers so that hopefully we'll move the gag line on his tongue back.

So, Natalie gave us homework for the next month. We're ready!
1. Try and increase the repertoire of mouth toys. [we can only think of 2-3 toys that Nils puts in his mouth. The more toys he puts in his mouth, the more vehicles to bring food to his mouth, too!]
2. Bring snake [he sucks snake's antennas at night before he goes to sleep] to dinner table.
3. Once Nils is used to snake at the dinner table, put food on it.
4. Push down on the front of his tongue with finger, nuk brush or gerber bisquit, and gently take the finger further back but stop before he starts to gag.
5. Try cold teethers and popsicles.
6. Experiment with sour tastes (lemons, limes)
7. Gerber biter biscuits - use in Nils mouth like a nuk brush.
8. Start using more words for actions, like "up" "mommy". Nils is starting to really associate words with actions.

We're ready! After seeing Natalie, Nils and I went directly to the YMCA to drop the car then walked over to pick up Meghan from preschool, and then walked back to the Y for swim lessons. Nils loves being at the pool. He is very social.

I just remembered another suggestion. Amy, my sister, had suggested this a while ago, too. Let him play in pudding or jello or something edible and fun with his sister (key to getting him to put it in his mouth) so that he starts to experiment with tastes in a fun setting. I think we'll try that Friday, when Meghan is at home.

Quiet night tonight so far.

Ranch dressing....yuk!

2004-08-23T13:58:00.000-07:00

OK, so I decided to try ranch dressing again. Nils hasn't been too keen on it in the past, but since cesear dressing was such a hit, I thought I check on ranch dressing again. Nope. He doesn't even like to close his mouth if it's on his lips. He gave me two gags with the ranch (fortunately, he didn't successfully gag into a spit-up). I'll have to get some cesear dressing and also look for some white sauce (alfredo sauce?).

I think his teething might be having an affect. His upper right front tooth is coming in and it's huge! Nils recently has started avoiding my finger in his mouth. I wonder if this is because of the teething. I tried the rubber finger brush and he liked that once I got it in his mouth. I think he likes the feel of the bristles on his gums. I was able to use it all around his mouth including his palate and he didn't gag. It's frustrating that he won't take my finger. The good news is that he's avoiding my finger by closing his mouth and putting his arm up in front of his mouth. Again, this is a great response. Much better than gagging.

The past week or so has been difficult as far as getting Nils to keep his food in his tummy. At times he has a tendency to gag and then go into a full-on gag that empties his stomach. The key for us is to get him to suppress this urge even though he has something tickling his throat (usually mucous). I'm pretty sure that he's able to suppress this urge and even not even notice that it's there when he completely pre-occupied...like sleeping or being outside with his sister and her friends and the neighbors. Remembering back, he was really good about not spitting up at Meghan's birthday party and the morning after when his aunt and uncle and cousins spent the night. The only big spit-up he did was when Meghan was blowing out her candles on her cake and both Mark and I were pre-occupied. I think Nils tried to get our attention back by a big gag and spit-up.

I really believe that we have to help Nils get stronger so that he is more supported through is torso and we have to encourage him to suppress the urge to spit-up. As he gets older, these will become more and more possible.

3rd try

2004-08-21T21:26:00.000-07:00

OK, I'm going to keep this very brief. This is the third try on tonight's blog. I keep stepping away to do something and when I come back, I finish the entry only to find out that the session had expired and I lose my comments. I wonder if I'd lose everything if I just saved as draft. I think so. Anyways, here are the hightlights today.

At our favorite beer-patio restaurant (Gordon Biersch), Mark (Nils' daddy) fed Nils the dressing on his cesear salad. Oh boy, did Nils enjoy it! He smacked and smacked his lips and NO gags. He did this everytime he was given some dressing. He did break out in some red splotches. I think that must mean that the dressing had some mayonnaise or egg whites. Nils has broken out in hives in the past with mayonnaise. I switched to Trader Joe's low fat mayo and he doesn't break out in hives. I think it's because the low fat version is made with egg substitute.

I also gave Nils mashed potatoes to play with, but he was more interested in playing with the plate. I've ordered some adhesive table mats to use in restaurants (and home) that will let us puts messy foods in front of him without a plate.

Nils loves restaurants. He'd love to play with all our utensils, too!

OK that's if for tonight. Gotta save this one!

2004-08-21T21:05:00.000-07:00

Well, there hasn't been much to write about these last couple of days. Nils has been having a hard time with his reflux. Although he's been able to stop himself from spitting up most of the time, I can tell that his tummy has been giving him problems. His little face gets a bit distorted as he tries to keep down the bubbling stomach. Most of the time he succeeds which is a big step for him. On days like these, he just doesn't have the energy like he usually does. Also, his oral aversion is more acute. He really doesn't like even my finger in his mouth on days like these.

Today seems different. I've really noticed that he's stronger today and he doesn't seem to have as many tummy episodes. He has had a few spit-ups today, but overall he doesn't seem to be in too much discomfort. He's been playing with his lips, tongue and sounds all morning and even during feedings. We took him swimming at the pool nearby and he loved it, especially since his sister was in the pool with her daddy at the same time. We had lots of fun.

Tonight we walked over to Gordon Biersch for dinner. It's always a good night out. Meghan loves the walk over and back and does much of the distance running. Nils loves sitting at the table with us and banging on the cast-iron table with his toys. His daddy fed him the salad dressing from his small cesear (spelling?) salad and Nils really seemed to enjoy it. He did lots of smacking and never gagged. Mark (his daddy) gave him smear after smear of the dressing. The only drawback was that Nils broke out in a few red blotches. The dressing must have had mayonnaise or raw egg white in it. Nils broke out in hives once before when I fed him real mayonnaise. The mayonnaise that I've been feeding him since is low-fat from Trader Joe's which has an egg substitute in it. He didn't break out real bad tonight so I think he must be outgrowing this allergy. It was really encouraging that he liked it so much.

I gave him some of my mashed potatoes to play with, but I had to give it to him on a plate since the table was cast-iron grid. I've ordered some plastic table toppers to adhere to tables so that we can put his food right in front of him. He tends to see plates as toys, so they're not really useful for him right now.

Music therapy

2004-08-18T15:31:00.000-07:00

A catch-22. Does Nils have better days when I'm calm and at peace or am I calm and at peace because Nils is having better days? which comes first? I'm sure all moms deal with this dilemna. I just wish I could figure it out.

Nils has not been having the greatest week. Hence I'm having a rotten time. Well, maybe that's an exagerration. I, unfortunately, am a person who likes to be in control of every little thing. My son is teaching me over and over again that cannot be. Aghhh!

He's getting really good at spitting up the Pediasure. I think it just took him a few days to figure out how to deal with the new formula. Maybe not. But we have to be extra careful of the timing of his feeds again, especially when a car ride is eminent.

To add to my frustrations of the week, Nils had a follow-up visit with the Child Development department at Stanford. Hmmm. That's a hard visit for the both of us. Nils hates the strangers making him do things. I walk away feeling like I'm failing at being Nils care provider (clincial word for Mom). Why hasn't he caught up yet? Why isn't he eating by mouth? I get a heavy underlying suggestion from the therapist and clinicians that I'm not providing enough for Nils. Maybe not enough therapy, maybe not the right kind of therapy, maybe not enough of the "right" kind of play.

Of course, it's hard not to storm out of there and say, "Enough! Just let my Nils be a kid! He really enjoys so much about his life. Not, however, constant therapy sessions and doctors visits! give our little guy a break!"

But I don't. I start thinking about the things that I can start to do that will help him.

Music. Our children love music. Nils bobs his head when he hears any type of rhythm. He loves to see his Mama, Daddy and sister dancing and singing. Playing more music throughout the day is good for me and him and his sister Meghan who also has loved music since a baby. In fact, this morning, Meghan woke up and made her every thought into a song.

My dear Meghan reassures me everyday that I can succeed at motherhood. Nils will too. It will just require more patience and time.

I gave Nils some melted butter with mayonnaise yesterday and he tolerated it really well...no gagging and the smell hung around on his face for hours :-).

Today I gave him a yummy mixture of chicken broth, melted butter and milk with rice cereal. He was nice and smacky at first, but then as he realized what I was doing he got a bit upset. But only one small gag at the beginning. He even liked smooshing his hands in it. He let me put quite a bit in his mouth, even though he wasn't in the mood (or something). He did swallow some without gagging.

Tomorrow will be a better day.

Hard days

2004-08-16T22:03:00.000-07:00

Well, after such a good week last week, we've had a couple of hard days. I guess we knew that Saturday might be hard since we spent the day in San Francisco -- completely out of routine. Nils had a great day even though he did have a couple of big spit-ups. I almost had to wonder if I was over-feeding him on a day that had so much excitement. It's so hard to know!

Sunday was a quiet day at home, so we were able to get somewhat back on track. We had fewer spit-ups, but we still had more than I'd like. If I feed Nils when he's not completely empty, there is a risk that he'll spit-up what's already there...not the new food. Hmmm. I think I need to check his tummy before I feed him to see if something might trigger him. Yesterday he sampled pineapple (OK) and tarter sauce (nah). He's still really good with me putting my finger and the rubber brush all over his mouth. But tasting isn't so welcome. However, I'm not seeing to much gagging which is great.

Today, Monday, was a busy day, but we did squeeze in a bit of food play. He seemed to like the taste of dill juice (from dill pickle jar), but was not interested in dill juice with rice cereal. Lots of crying to get me to stop. At least he didn't gag. As far as keeping his food down, he seemed lots better at times. But then had a few unexpected spit-ups. It's a challenge.

Yum! White sauce!

2004-08-14T10:59:00.000-07:00

Last night we had vegetarian lasagne which was made with a rich white sauce, maybe an alfredo-type sauce. We gave Nils a taste and boy did he smack his lips with a smile! I'll have to make some white sauce for our little guy.

I tried giving him applesauce with chicken broth and mayonnasie before dinner, but he wasn't happy. He also succeeded in spitting up during a gag to avoid the food. Hmmm. Maybe I'm giving him too much of the same thing.

His G-tube site is giving him problems. He has a little ball of granulation tissue right near the hole. His Stanford doctor offered to take care of it yesterday afternoon with silver nitrate (ouch!). He also said we could treat it with steroid cream. So, in order to avoid a trip up to Stanford on Friday afternoon, I opted for the steroid cream. It seems to keep it somewhat calmed, but the granulation tissue is still there. If it doesn't go away by Wednesday, I'll make an appt to have them treat it while we're up there for Nils' follow up Development appt (he meets with the Child Development group every 4 months where they monitor his development...not my favorite clinic).

Nils is such a good-natured little guy. He's bothered when I'm tinkering near his G-tube site, but as soon as I'm done a smile appears on his face and he's ready for play. Nils certainly doesn't hold any grudges! And he never has.

Today we're going up to San Francisco to spend the afternoon with Nils and Meghan's cousins Elliot and John and Aunt Jen and Uncle Birk, as well as Aunt Anna who lives in SF. It will be Nils' first trip to San Francisco.

Variations on chicken broth

2004-08-13T16:00:00.000-07:00

Nils is having another good day with his tummy...very little reflux!

At lunchtime I gave him some chicken broth with rice cereal. Not thrilled, but did taste it. He tried to avoid me by turning his head. I didn't push him too much since I was looking tired and ready for a nap.

After nap and after a nice play time, I gave him some apples with chicken broth. I initially used a spoon, but then gave him the spoon to play with. I put the food in his mouth with my finger and tried to get it on his palatte most times. He liked putting his fingers in the bowl and eventually brought his fingers to his mouth. Now, he wasn't thrilled and gagged a few times, but he never went into a full-on gag and thus didn't induce any spitting up. He did swallow all that I gave him (well maybe a bit drooled out of his mouth). Afterwards, he's had his fingers in his mouth constantly. That suggests to me that his mouth has been pleasantly stimulated and he's just prolonging the nice feeling.

Last night at dinner he played with some of the potatoes and carrots from our dinner. He seems to like to participate in dinner even though he doesn't take anything to his mouth. I'm going to start grinding up what we eat and giving it to him at the same time. He's not good with a bowl since he sees it as a toy, so I'm going to get some of those stick-on placemats for him to use.

Chicken broth is tasty

2004-08-12T13:21:00.000-07:00

I'm noticing that when Nils likes the taste of something give me a smile right away before he has a chance to react to what I'm doing. He also will smack his lips together and sometimes he'll keep smacking for a while after the taste.

He gave me a brief smile when he first tasted chicken broth. Then he seemed to wisen up to what I was doing and tried to avoid my fingers dipped in broth. However, he did get some in his mouth and there was lots of smacking afterwards. I soaked some bread in the both but Nils seemed more interested in playing with the bread than eating it. I also stirred in some baby rice cereal in the broth and spooned some into his mouth. He kept his mouth open with the cereal/broth in his mouth (just barely) but didn't get overly upset and just went right along playing. Some of the mixture drooled out, but he did swallow some and started smacking a lot.

Nils is having a pretty good day today. His food is staying down and he's able to play soon after eating. Yippee!

Getting over a cough

2004-08-11T20:13:00.000-07:00

Yesterday turned out to be a bit harder than I'd hoped. The cold that Nils has been fighting seemed to be worse yesterday in that it was hard for him to keep his food down (lots of mucous). He had a few spit-ups and getting into the car has become hard again.

It was really hot yesterday, probably in the 90's. When we arrived at Meghan's playgroup, I gave Meghan her water bottle and attempted to give Nils some water through his tube. However, the water just wouldn't go down the tube...something was blocking (probably food and air). So I spent the next half hour or so spooning water into his mouth. I must say much went down his shirt but he did let me "feed" him the whole time. Hardly a gag occurred even with the spoon at his mouth over and over. I gave him a piece of watermelon to play with and rubbed it on his gums. He didn't mind too much but didn't really smack his lips together. He did like playing with the watermelon. Just as we were about to leave, he was interested in the raisins that I was eating. He didn't take them to him mouth, but it sure did look like he wanted some. I took that as a sign that he was hungry.

Later in the evening, we went out to dinner for Meghan's birthday. Nils loves sitting at the table for meals and this was no exception. He LOVED the energy and excitement. We were at PF Changs which is a American fusion Chineses restaurant. I gave him some mustard sauce that we were using for our lettuce wraps. Lots of smacking with some interesting faces since it was pretty spicy. No gagging. He's always shown a lot of interest in our beer bottles, so I gave him a finger lick of the beer I was drinking. Big smile from our boy. Hmmmm. Not sure why beer would give him pleasure. He might just know that he got a special treat...something only for Mom and Dad.

Today was better. He was happy after the feeds and didn't spit up after several feeds. In fact, after the 5:30 feed, it was almost as if he didn't have anything in his stomach. Really encouraging.

I gave him some time with the bottle in his mouth with a small amount of Pediasure in the bottle. He's not thrilled with the taste, but he will swallow it. He let me play in his mouth with the bottle for a little while.

He tasted regular hummus yesterday. It's a bit more grainy than the sun-dried tomato hummus he had the other day. He didn't like the texture, I think. But he didn't gag...just pushed my hand away.

Oops

2004-08-10T11:56:00.000-07:00

Well, Nils started out the day kind of rough. This morning he had a hard time with keeping his food down. I forgot to give him his reflux med last night (Prevacid), so maybe his tummy wasn't its usual self without the med. He seems to have done alright this morning, though. We went to his pediatrician this morning because for his sister Meghan's 3rd year check-up. She's doing great and checked out just fine. Nils weighed in at 19 lbs 3 oz. Still keeping the same weight. His pediatrician thought his G-tube site looked good. Whew. She didn't think it looked infected.

Nils wasn't happy to be at the pediatrician. But then when he realized that the conversation and attention wasn't centered on him but rather his sister, Nils started to have a good time (talking, playing, standing). It wasn't so bad a visit :-).

We have a busy day today because it is Meghan's true birthday day. I'll be co-hosting playgroup for Meghan this afternoon and then we're all going out to dinner for Meghan's birthday. Not sure if I'll get a chance to do much food play with Nils. I'll post later if I find time to do something.

New start!

2004-08-09T11:35:00.000-07:00

Nils is doing so much better on the new formula Pediasure. When I feed him he doesn't look uncomfortable or urpy. And there doesn't seem to be as much air in his tummy. There are three possible reasons why this formula may work better than the Similac Advance. First, Pediasure is lactose-free. Maybe Nils is lactose-intolerant? Second, it is premixed. So we aren't adding any air bubbles to the formula during mixing. And third, it's heavier. So it may stay down easier? Nils had a great day yesterday and survived the big birthday party for his sister. He loved all the people around, but he would have loved it more if I had been holding him the whole time.

At lunch time, we gave him a taste of sun-dried tomato hummus. He smacked his lips a lot and did not gag on it. Next time I'll have to see if I can give him a bit more. We gave him some rice cake and crackers, but those he took just to throw them down. No interest in bringing them to his mouth.

At cake time at the party, Nils grabbed his Daddy's cake and frosting. He got his hands all full of cake and frosting, and some went to his mouth. I don't think he gagged (I wasn't there), but he eventually didn't like his hands full of cake.

Today, we're having a good day so far with his feedings. I was able to feed him and make breakfast for the family at the SAME time. That was unheard of before with the Similac feedings. We are very optimistic that he is finally going to gain weight on this new formula and hopefully become more receptive to mouth feedings.

Today is a better day

2004-08-08T10:18:00.000-07:00

Yesterday was hard. Nils was still not himself. He had a constant low-grade fever and was cranky. I still worried that the G-tube site was infected and making him feel pukey. In the afternoon it was obvious that he really wasn't feeling well, so I called the on-call nurse. It's such a pain on the weekend. The only way to get looked at is to go to the ER. So we went. Nils wasn't happy with the visit that's for sure. His temp was still above 101F so it was worrying. The good news was that we were only there for 2 hours! The doctor thought the site looked alright and probably wasn't causing any problems but that he sounded like he had a bug...congestion, cough, runny nose. Yup, that weekend bug was still hanging around. So even though it was likely he had a virus infection, the doctor prescribed an antibiotic which would take care of any possible infection at the G-tube site, too.

Nils was so happy to be home. He slept beautifully through the night and looks 100% better today.

I just tried to get him to play with the bottle during eating, but he's not interested. It may take a while to get back to where we were.

We changed over to Pediasure yesterday from Similac Advance. I know it probably wasn't the best day to try something new. But he was already pukey on Friday, so I knew that any pukiness may not be from the new food. Nils seems to tolerate Pediasure better than Similac. There is a lot less mucous and air in his tummy. The Pediasure is lactose-free, so that may be a factor. His GI doctors didn't think so, but maybe they don't know everything! Today we're giving him half strength diluted in water and we'll go up to full-strength in a day or two.

Today is his sister Meghan's birthday party. She turns 3 years old on Tuesday, but today is the big Party. Good thing we'll all well!

Something's up with our little guy

2004-08-06T21:55:00.000-07:00

Nils is fighting something and that explains why he's been more sensitive to spitting up than usual. Since he doesn't regulate his own appetite yet and he can't yet tell us when he's just not hungry, Nils will spit up if his stomach just can't tolerate his food. It always takes me a day to realize that the increased spitting up may be due to something other than his reflux. He has a low grade fever so I gave him some Tylenol. He's been sleeping very peacefully since about 8:00 pm.

It could be several things...teething (his front teeth are really bulging), residual cold (we're all fighting something), or his g-tube site might be infected (hopefully not!). He had his initial g-tube replaced with a mic-key button on Tuesday and the procedure was a bit more rough on Nils than we would have liked to see. His poor tummy skin seems more irritated than usual. I'm keeping it clean and applying antibiotic ointment. If he's still having a hard time tomorrow, I'll call his pediatrician. Of course it's the weekend...

Nils has been in good spirits all day despite his difficulties. He's such a sweetie. He puts up with so much and still smiles and laughs.

Tomorrow will be a better day.

Yup, it's a hard day

2004-08-06T12:56:00.000-07:00

I've realized that some days I have to spend most of the day just getting food into Nils. The whole idea of getting him to eat by mouth has to go to the back burner. Today is one of those days. Any slight gag (such as gagging on his thumb) can trigger him to empty his stomach.

He's in good spirits, as always. I have been able to do a little bit of bottle nipple time with him, but he finally decided that he didn't want any of it. Fortunately, he pushed the bottle away instead of gagging.

May be a hard day

2004-08-06T10:18:00.000-07:00

Today may be a hard day. But that's OK, because we've had a couple of good days with Nils. Yesterday, Nils didn't have any big spit-ups. Yup, that's right I didn't use any burp clothes. Unbelievable. He also played with the bottle nipple on THREE consecutive feeds. I was able to keep the bottle in his mouth for at least 15 minutes. Sometimes he bit down and eventually swallowed the formula. He didn't gag hardly at all nor did he seem phased that there was something other than his own saliva in his mouth. I did all this WHILE he was being fed, too. Pretty risky, but he seemed fine with it. I really think we are making progress.

Today may be hard because he's already had a few spit-ups in his first feed. He seemed to have a lot more mucous in his tummy than usual and that really made him uncomfortable. He also was against anything going near his mouth. Usually he is pretty sensitive for his first feed of the morning, but yesterday I was able to play with him during the first feed. We'll see how today goes.

Yesterday, Nils also tasted some of my mashed avocado and seemed to like it. He smacked over and over and didn't gag on it. I'll have to try it again.