3 days to go!

Team work using the "fire hose" to fill the pool yesterday.



Today is the third to last day of feeding clinic. Tomorrow and Wednesday my husband and mother will be spending the day observing and being trained on how to feed the boys using the proper protocols to deal with their eating behaviors. Because their issues with eating are truly behavioral stemming from being conditioned by so much vomit and pain. They can both eat purees and bite and chew and swallow with no problems, it's a matter of convincing them to do it and to get over the gag reflex. It's not enough for me to show them how to feed the boys, they really need the therapists to show them and give them instruction and guidance on dealing with the boys refusals and quirks.

As of right now their protocol to feed both oral averse, spoon defensive children at the same time is this:

Therapists are assigned to provide assistance and keep track of the feeding data (refusals, acceptances, gags and emissions). They also are there to help block the boys from the television with a folder instead of my having to pause the television. (It is to the point that if they refuse and then see me reaching to pause the tv they will suddenly lean forward and open wide to get their food in order to prevent me from taking their television away.)

They eat the best when sitting in the traditional highchairs, but can be fed in a simple booster seat with a lap belt and tray to keep them seated too. I will feed them several sips of milk (maybe 10 to 20 sips in a five minute period) and may occasionally have to pause the television because they are either so mesmerized by what they're watching or they are ignoring/refusing the drink. Then I will take turns feeding 5 to 10 bites of a smooth puree, either a stage 1 or 2 and some stage 3's though those are quite a gag challenge and they will consume less volume of stage 3's. Then after those 5 or 10 bites I will offer the child their Take & Toss sippy cup to sip from while I turn to his brother and follow the same steps.

When the spoon is offered if the child refuses or ignores the spoon or swats it away, then the tv is paused or turned off until the child willingly takes the bite of food or sip of drink. Because they are only 2 they aren't crafty enough to know that they could continue to refuse forever and ever, and since we know they like some foods they willingly do accept some. Eventually the process of opening the mouth becomes rewired into their brains as an automatic response and they barely even know that they are doing it. Hallelujah! THIS very thing is the reason why you want to get your non-eating child into a positive reinforcement program like Mt. Washington's Feeding Day Program as soon as possible. Because while they've lost two years of eating and oral development skills, they are still young enough to basically rewire the habits that we take for granted as adults without oral aversions. And this is why we never would have gotten to this point on our own at home. Because in order to make sure that we could thwart the boys defensiveness and fear of eating was to have a program that was perfectly consistent and positive and had the physical manpower needed to do the "hands down" procedure to take away that automatic defensive response to swat the spoon coming at them. Initially this is something one person could not do, but now with the proper conditioning of the boys by the program and training for me, I can do this by myself with one hand on the child and one on the spoon. It is exhausting, and will change and morph and be modified as the grow and learn and try to test their boundaries and limits, but it works and very well.

This by necessity means that to feed both boys at the same time meals take longer than any one meal should take for a 2 year old. But if there is no one trained to help then this back and forth, taking turns eating/feeding is the only option.

You might be thinking, "Well you have help at home so why not have one adult feed a kid while you feed the other, Laura?" But this makes it difficult too unless the boys are facing in different directions and watching two different screens and can't see each others tv's. And how productive and functional would that really be? If there are two of us feeding the boys but only one tv it' is crucial that the two adults know exactly how to feed the boys using the proper protocol AND both adults must observe each bite of food by each child so that they are aware of whether or not they need to hold back on offering a spoon of food so that the other person can pause the tv without negatively impacting the child who is eating well. So in practice it's MUCH easier for me to feed the boys alone without help, but it takes longer and they may not consume as much food quickly as if they are fed individually. But that's the lot that happens when you have two kids with the same feeding issues.

We have been able to use the Response-Cost Contingent Reinforcement with Video protocol (that just means they can't have the tv back on until they take a bite) with crunchy foods too, though Evan is still too afraid to try to bite down. I know he can do it, but just getting him to do it is our next huge goal. Cameron will now take small bites of crunchy foods and now eats Goldfish crackers, Ritz Crackers, Gerber Lil'Crunchies puffs, cheese curls, and veggie stix.

It's still a very long and very slow work in progress.

First Haircut

We have FINALLY gotten the boys their very first hair cut. Scissors have never come close to a precious hair on my boys heads. Until today Evan's very first extra long lock of hair, the one that was a good two inches longer than all the rest that I used to comb over the top of his head when he looked like a miniature 50 year old balding man is now sealed in a little keepsake baggie. Cameron also has his first curls sealed away too. I had wanted to wait until people were mistaking them for girls, but the constant issue of food getting in the hair was a pain to manage and it seemed like the boys were ready for the experience.

Now, I know you may be thinking, why not just do it yourself? And believe me, my husband and mother both fought the good fight. But I do not cut hair, ever. They will end up with horrid lopsided bowl cuts with odd random bald patches. Worse, someone would lose a finger or an eye. I am one of those people who has happily accepted that this is one thing I do not want to do myself if I don't have to. And especially for something as momentous as their first haircut. I wanted pictures of the event too, and since I am the resident photographer (although my skills are poor) I couldn't very well take pictures and cut hair at the same time. Plus who doesn't want to sit in a firetruck, airplane, or police car while watching Dora the Explorer when getting their "hairs did"?

Every weekend for the last 7 weeks we've been trying to go to a great place called Pigtails & Crewcuts in Annapolis. Each weekend was always something that prevented us from going, the boys took extra long naps, the shop was closed for the Memorial holiday, then they were closed for an employee's wedding, then the boys were sick, on and on. But I was determined to go there. This place specializes in cutting childrens hair. It's bright and has lots of toys and a train table for the kids to stay busy. If they like a toy off one of their shelves you can let them play with it if it will help keep them distracted, and then if they really like it and you want to reward them you can buy said toy too. Instead of the standard chairs you have in most salons they have an old fashioned airplane, firetruck, and police car. But if your child is agitated and needs mom or dad to help them, there are two chairs for the parent to sit in with the child on their lap instead. They also have a party room. Every station has a flat screen tv and the boys watched their favorite Dora episode. They barely noticed that their hair was being cut other than to swat at the hairdresser and whine a little bit. And I managed to keep it together and not get too emotional about my babies losing their first curls. Cameron's hair will likely be as pin straight as his father's hair. But Evan definitely still has some body and curl to it that I know will come back in humid weather and when it gets long again.

The whole thing took less than 10minutes and we were done. The boys even got to pick a toy from the treasure chest before leaving because they were so well behaved. They no longer look like toddlers just fresh grown out of infancy, but toddlers moving full steam ahead into big kids. My babies are gone, but not entirely. They are still my cuddle bugs even if they look too mature for their 26mos age.

The boys this week during our first unsuccessful attempt at making a thank you photo for the Feeding Clinic. You can see their hair gets a little wild.


Leaving "school" on Friday:


Cameron before the hair cut:







Evan before the hair cut:





Bye bye first curls:



See that one lock of hair going in the opposite direction towards his cheek? That's Evan's super long first lock of hair. It was at one time the only hair on his head.


Look how long it is!?!?!!



I think most people will now be able to tel the boys apart pretty easily at first glance.

And now for the reveal..... Introducing....

Cameron and Evan






Evan





Cameron





Since the salon was so quick about cutting their hair we had about an hour to kill before lunch time and then heading home for nap time. So we walked to the nearby toy store, then we hit the pet store to check out the fish, lizards, ferrets, and rats. Evan was really impressed with the fish and kept going back to one take in particular and asking us "Where go?" (meaning, where is the fish hiding).



In this picture you can get a better idea of just how different the boys look to us, particularly noticeable is their size difference. Cameron is a half a head taller than Evan.


Evan asking "Where go?" of the fish in the tank.

Holy Moc-a-moley!

Last Friday I fed the boys a mashed avocado. They loved it, especially Cameron. It is the first food they've asked for repeatedly. He loved it so much that recently he's been asking to "Eat dinner! Moc-a-moley!" Meaning he wants to eat guacamole for dinner. I would gladly give it to him except that when I gave it to him the first time it bound his BM's up for a whole weekend. Not sure why that happened because I thought it was one of those laxative type foods, but Evan had the same problem too. I'm going to wait a little longer until their bodies are back on track and then try it again since it was such a big hit.

Up with Calories = Down with Volume

The boys vomit a lot, every day. Not news. But what is news is that we finally have a plan to maybe help them keep from vomiting. We have been asking the GI every day when can we cut back on the volume of formula the boys get every day. This way we can slow down the rate and get them the calories but not stress the stomach so they will hopefully not puke at every feeding.

The response from the feeding clinic is that we can't do that until the boys show that they are gaining weight from the intake they are getting by mouth. They need to be gaining an average of 4 to 10grams a day or more consistently. Since Cameron had lost some weight (which we expected from being stressed about starting the program and from being sick) we had to also add to our goal that he regain that weight he lost plus show the daily increase of 4 to 10grams a day. Evan did not lose any weight, but he plateaued which isn't really good either.

Since last week the boys are up for the first time since starting the program 6 weeks ago, and significantly so. Cameron is now weighing 12.5kilos (that's 27lbs 8.9oz) and Evan is 10.9kilos (that's 24lbs .48oz). Which is about how they've been trending in size difference all along and still keeping them right where we want them on their individual growth charts. This means that we can try a new formula (we are on Peptamin Jr and will be switching to Boost Kids Essentials) regimen to help keep the boys on track while hopefully keeping them from puking all the time.

Currently Cameron is getting 900mls of formula in 24hrs. His noon bolus feeding during naps being 200mls of formula with two scoops of DuoCal in that mix to make up an additional 50mls of volume we weren't giving in hopes that he'd stop puking in his nap. This is all given at a rate of 150mls. Then at night he gets the remainder 650mls with another two scoops of DuoCal to make up for some more volume we weren't giving him. The rate of this large overnight volume starts at 150mls for the first hour and then we lower it to 100mls for the second hour, and then we drop it one last time to about 75mls for the remainder of the night and let the milk bag on the pump run dry and turn it off some time around 1am.

Evan is pretty much the same schedule including the rate of flow that he can tolerate but he requires less volume than Cameron, so he only has been getting 850mls per day of formula in the pump. At naps he gets 250mls (with the DuoCal mixed in for extra calories so we could cut some of that volume) and then the remainder is at night with another couple of scoops of DuoCal for the extra calories.

Now the new formula the boys will be getting in their feeding pumps is Boost Kids Essentials (they make a 1cal mix that you can buy in stores for about $10 a six pack, but we will be getting a prescription version of this that is a 1.5cal mix through our medical supply company) and then we will also be feeding the boys this as their milk with meals. We will also be dropping the DuoCal completely. This is kind of a relief because DuoCal is pretty much just empty fat calories and no nutritional value. An amazing product to pack on pounds for kids who need it, very versatile in the ways you can cook and bake and mix into foods without effecting the flavor or consistency, but the risk is that they are missing out on vitamins and minerals and if used for an extended period of time without supplementing those lost elements can play tricks with the child's iron levels. Hence this is product should NEVER be used without consulting a physician first.

Cameron will be getting a total of 650mls a day (!!) that is the equivalent of 975 calories a day, which will be given in two boluses, the nap and the overnight feedings. At nap he will get 200mls and the remaining 450mls will be at night. Evan will be getting a total of 600mls a day (!!!) that is the equivalent of 900 calories a day, the 200mls during nap and 400mls at night. We will likely have to slow the rates down considerably to do our best to ensure that they don't vomit, especially in their sleep, which means that technically speaking they may not be off the pumps more or earlier than 1am. But because this formula has a tendency to be very thick and gooey or mucus-like when vomited up, thus causing a bit of panic when they have trouble clearing their airways, there's not much that I can do to help them when this happens so we have to try to slow it down to where their stomach can stay ahead of the digestion. It's scary for them and me.

We'll be also giving them a 30ml water flush as a chaser after their overnight bolus because now that they're getting less volume we have to be really, really, REALLY careful with their water intake because they may easily become dehydrated. This whole plan relies on the boys continuing to consume at least 2oz of a puree and 2oz of a liquid per meal three to four times a day.

But the bottom line is that assuming the boys acclimate to the new formula and tolerate it eventually at higher rates they will be off the pumps as much as possible and we can feed them more and more as their little tummies learn to tolerate more than 2oz of solids in them at a time. The Director of GI for the feeding program says that he's certain that the boys problems are a motility issue that is aggravating the reflux far longer than it ever should have. And he said that my boys have the most sensitive stomachs he's ever heard of when it comes to keeping them positioned right and is amazed that we can trigger a reflux vomiting episode simply by disconnecting their feeding tubes.

Yesterday morning we did our first run of feeding the boys together in the same room. Initially it was to be Evan's primary therapist feeding them but since he's never fed two kids at the same time he asked me to come in and do it so he and Cameron's therapist (who was watching through the one way mirror) could watch and see how best to modify the protocols since the boys have two slightly different methods that work well for each of them individually, but I have to be able to feed them by myself. That is to say, if I have to "discipline" one child to get them to take a bite (ie. turn the tv off until he takes the bite of food) what happens to the other child who's not being fed at that time but loses his tv because his brother is refusing to eat? It is a work in progress because individually the protocol requires that I pause the DVD player when the one child refuses. When I feed the boys together I need two therapists sitting on either side of the boys with a file folder to drop down in front of their eyes to block their individual view of the tv and get them to take a bite without punishing the child who's not being asked to do anything.

I only have two hands and can only feed one very resistant mouth at a time, so I'd basically have to become like the Hindu goddess Shiva with her many arms in order to feed them with this protocol. But then what mother of multiples doesn't need to do this every day?

My two year old can "read"!

For a little while now Cameron has been able to finish the last word or two of each line of his favorite books. And today I was singing "It's Raining It's Pouring" and he was saying the words along with me (more in a speaking voice than a singing one). And tonight while changing his diaper I handed him a board book of "Brown Bear, Brown Bear What Do You See?" by Eric Carle and he started reading the book. And he would turn the pages to the next page for each new animal mentioned in the story.

I realize that this is just because he's memorized it, but it's the action of pretend play, the memorization, the pronunciation of the words, and the focus that blow my mind. And this is not the only book he can do this to, so it's not a one trick pony. He can "read" the books "Wow, Said the Owl" and "Go Dogs Go". He's also saying three and four word sentences and is a little parrot with words, so we have to watch what we say now.

Even Evan is doing some of the "reading" now too and will say the last word in each line of some stories, though we do have to give him an extra long pause and ignore Cameron's shouting of the correct word so that Evan knows he needs to speak. But he totally gets the concept and is really starting to open up.

Evan seems to be struggling with two major things: teething molars keeping him up all night every night, and sleep un-training. For the last three or four nights Evan has been waking up screaming every 5 to 40min and nothing seems to curb the discomfort. But his behavior is so unlike him that we almost don't know for sure if this is what it is. It seems that during the day he's fine and despite the lack of sleep he is getting (and us grownups too) he's performing perfectly at feeding clinic. The other issue is that because sometimes Evan has time settling down at nap time in feeding clinic, the girls managing the naps in the playroom have had to resort to rocking him to sleep. This is a big No No in our house, mostly because we can't rock both boys and whomever is not getting rocked gets upset and they generally don't sleep well through the night because they wake up looking for me. But since the girls in the playroom have 10 kids to settle down for naps or quiet time, four of them on feeding tubes, I told them to continue doing what works for them even if it's making our lives MISERABLE. I completely understand what it's like when you are outnumbered and don't have enough hands to go around and try to convince toddlers tied to tubes to go to sleep in a playroom. My misery will be short lived because I can re-sleep train the boys once the program is over, the girls in the feeding clinic get a whole new batch of kids to deal with every six weeks and have to start from scratch each time.

Tomorrow I will be working on a post to cover the last few days and the new protocol changes to the boys feeding therapies. Over the weekend they both consistently ate 2 ounces of either pureed stage 1, 2, and some stage 3 foods at every meal. Their liquid intake is back up again and the nurse hinted today that their weight is way up again and she'll be asking the GI director of the program if we can start cutting back on the boys formula volume in the tubes.

Hear Ye! Hear Ye!

Today we had our Feeding Team/Family review meeting to cover how the boys have been doing over the last two weeks. Given that they had a horrible virus they are eating remarkably well. Their consumption of solids and liquids is up and their compliance is doing dramatically better.

Cameron's compliance with the requests to take bites and sips of milk at 88%, meaning 88% of the time he will willingly open his mouth for a spoon of food or take a sip of a drink. He did lose weight from being sick though not as much as I thought he would, only about 100grams lost total. Now his primary goal will be volume of food consumed. He's demonstrated that he can eat up to 2oz of pureed solids from a spoon and 2oz of milk in one 30minute feeding session without complaint and with no problems.

Evan has gone from immeasurable quantities of food and liquid, and his compliance to requests to eat and drink was at 0 and since we've implemented the "hands down" procedure (where we offer food and if he puts his hands up to block we hold his hands down until he eats the food before giving him his reward). Now his compliance is at 93%, though we do often have to block his hands so that he can't push the food away before it gets to his mouth. Evan, who was the sicker of the two babies, actually gained weight at a rate of about 4grams per day. He has been able to show that he can consume as much as 2oz of milk and almost an ounce of solid purees, though it could be much more if he would stop nipping at just the front of the spoon and open his mouth more. Evan's new goals are also to increase his volume of food consumed by double what he has been willingly taking, as well as getting him to open his mouth more and biting on a crunchy solid food and possibly even chew it. This last goal of biting a crunchy food is a lofty one for now and by the psychologist's opinion will take a very long time for him to achieve, but we feel that he will do it.

If the boys continue on this path we are hoping that by mid July we might be able to cut back on the volume of formula the boys are fed through the feeding tube. We have to see a dramatic improvement though, roughly 4 to 6oz of solids consumed per day (per boy, of course).

During the meeting I asked about the additional speech services the boys are getting there three times a week. I said that I was very happy with how much more language both boys are using to communicate and babble. Cameron is especially talkative and repeats EVERYTHING he hears very well. But I'm particularly concerned with Evan. When he does say words he never ever says them loud, never enunciates any of the sounds. And while I know he can say the word in the correct way I wonder if he's actually hearing it like he should because he can't or won't say it even when I get down on his level and enunciate and try have him repeat it back to me. I'm also concerned that he doesn't always respond when we call his name and I'm not convinced that it's because he doesn't know who I'm talking to or that he's ignoring me, because I know he's looked up at me when I talk to him from a distance and will follow commands (sort of) when I ask him to do something. His pronunciation is not improving either, the word water is pronounced "Wa-er" but he can say words that start with the letter D just fine. My thought is that Evan hears but not well and so that may be part of the reason for his excessive delays with language and communication. I know I'm not supposed to compare the boys, but Cameron and Evan hear and see and do all of the exact same things from the exact same people. They are exposed to all the same opportunities, and Evan even gets more speech services than Cameron. So why isn't he saying more, saying it louder, and saying more words with better enunciation? I have also not worried about it much because he is talking more in general, which is common for kids in intensive feeding therapy programs. Since the hospital the feeding clinic is in is set up for everything possible they can do it for us in the middle of the day without interrupting therapy sessions, provided the doctor is available before we're discharged next week. I think they will only be testing Evan at this point. I don't think they will test Cameron because he's just a chatterbox and is really very observant and quick to pick up new words now. Hopefully they can do it tomorrow.

Surreal

In my last post I said that I would check on Evan at 9:30pm to see if his fever went down and stayed down. It didn't. It peaked at 105.1 and we went into fever reducing gear. More motrin, woke him up from a dead sleep to give him a lukewarm bath, started pumping him full of pedialite because he was sweating so hard.

This is the part where I thank the powers that be for the damn feeding tubes. Because even though I hate them and they are the bane of our existence right now, they are the safety net every parent wishes their kid had, right next to the illusive on/off button. When other kids get this sick their parents have to hope they can convince their little one to consume fluids and take yucky medicines. I can, without waking them, administer all the fluids and medicines they need and just have to cross my fingers that it all stays in their little bodies and doesn't get puked up.

Luckily the virus we had didn't come with any other symptoms so there was no extra puking, just scary high fevers that would come and go. We did go to the ER because that's what the advice nurse told us to do, but that was a waste of time and money. In the end they took blood from Evan, kept us until 3am before sending us to Children's in DC, who also did nothing before sending us home at 7am on my request. By midnight Evan's fever had been maintained, but the ER doc at the local hospital felt that his white bloodcell count was much too high (about 20,000 to the 4 to 11 count it should have been) and insisted on sending us to Childrens in DC. Children's felt that we'd managed to get the fever down, couldn't find a cause for a bacterial infection so deemed it viral and said we'd have to wait it out.

By Saturday afternoon Cameron also had the virus and his fever spiked as high as 103, but never has high as Evan's fever. It took until Tuesday for the fevers to all subside. During this period the boys naturally refused to eat or drink anything by mouth (again, thank god for feeding tubes) and we spent the weekend inside with veggie babies in front of the television, because that's all they wanted to do besides sleep. Fine with me.

We did continue to stick with our feeding routine, just with no pressure to comply. I mean, would you want to eat and drink when you're that sick? But because we didn't want to lose the progress we made we continued to try and go through the motions. And surprisingly the boys did eat, just didn't drink anything. They would open up their little mouths and take small spoons full of purees though nothing more than a few grams at a feeding session.

By Wednesday I knew they'd be fine on Thursday but still tired and so we called out the remaining two days of the week and just settled in to enjoy a long holiday weekend. On Saturday we went to dinner at a local Mexican restaurant and Cameron ate a couple of bites of my guacamole and really liked it, which is excellent news because avacado is the best calorie laden food you can give a kid. Monday we went to Mommom and Poppop's house for a cookout and had a nice time. The boys ate a little puree and licked a piece of hotdog too.

Yesterday, Monday, was our first day back and it was like we were only gone the whole weekend. But because of our week and a day missed due to illness they have pushed out estimated discharge date back to June 16th. This is good, and I would happily negotiate they keep us until mid-August if they wanted because I'm sure if we could continue with this intensive program we would see leaps and bounds of improvement.

But doing a program like this is exhausting, especially when there is a long and rough commute involved. If it weren't for the commute I think the boys would tolerate it better. The other thing that has been good for us is that the boys, especially Cameron, can count to 10 very well and know their body parts like mouth, teeth, tongue so they can understand basic commands like take a sip, touch the food to your tongue, kiss the food, touch the food to your teeth, etc. It was coincidental that we taught them these things before clinic, but what a lucky thing to have learned at the right time. While they may not comply, the therapists know they can work with an un-compliant understanding child as opposed to having to teach all those things and then try to make them compliant.

This is a painfully slow process to get the boys eating. But so far everyone at the clinic is confident they will be eating lots of foods very well by age 3. But the most surreal thing is to actually HAVE to go buy baby food because they are consuming it and not because we are just going through the motions to offer food that will be refused. They are eating. The boys combined eat about one ounce of pureed foods a day. That may seem like nothing to you, but it's everything to me. It's an ounce of puree food more than they consumed before. In fact, this morning Cameron ate 2.5 ounces of yogurt before refusing any more. HUGE!

So now I go to the grocery store and I buy six jars of baby food instead of two to last us three days. Pretty exciting, very surreal at the age of two.

And because I haven't posted any pics in a long time....