Thursday, June 24, 2010
Tuesday, June 22, 2010
We often will give the boys a 5, 2 and 1 minute warning before moving on to something else. For example, now that they sit in the bathtub without baby seats they love it even more and will pitch an absolute fit when we have to take them out to dry off. Or when we have to go inside from the yard to eat dinner, or when we have to turn the tv off.
Yesterday Cameron started demonstrating his understanding of this concept. Now he tells us "five more min-its" to be finished with dinner, or "five more min-its" before he wants us to go outside, or to go home, etc.
Evan is into building towers and knocking them down saying "Oh noooooooooo!" with his hands up in the "what happened?" position, like it's a great tragedy. So stinking cute.
Posted by Laura at 2:08 PM
Monday, June 21, 2010
The boys are still trying to recuperate from their seven week ordeal we call "school" (aka feeding clinic). The whole production was just very overwhelming and exhausting for them. Evan is starting to slowly sleep a little bit better and I think by the end of this week he will be fully re-sleep trained. I on the other hand may have to be re-sleep trained myself. Evan is up by 5:45am because he poops, and who can sleep after they've pooped? But Cam is sleeping pretty well until 6:30 or 7am. But they both are exhausted and ready for nap by 10:30am or 11 and will nap for about 3 hours or more.
And they are starting to slowly get over their separation anxiety that developed because they would see me and then I would disappear at feeding clinic. Well, I should say, Evan didn't seem the least bit bothered by my leaving him and often would walk away without so much as a glance or a bye-bye. Cameron is my little emotional worry wart and he would refuse to get out of the stroller, would cling to me, cry and scream until he puked when I left him. Pretty typical of kids going to daycare, even the puking though Cameron is much more adept at it than most kids.
And when I would observe the boys in their feeding therapies Cameron was always asking the staff "Where Eban? Where Eban go?" At home Cameron was constantly reaffirming that "Mommy here?" and "Daddy here?" and "Where Eban? Where Granny?" Now that we are home every day he's always looking for me and gets very anxious when I leave his sight. Even to wash my hands in his line of sight makes him anxious.
Cameron is very good at making himself understood, though to the outsider it might take some translation. This morning I was putting some After Bite anti-itch cream on his mosquito bites (the damn bugs love Cam but rarely get Evan) and I guess it was a little stingy because he's scratched the bites open. He scooted away from me and with a very worried face said, "No more, all done, Eban's turn, do Eban." He did not want me to put any more cream on him and that was that.
Posted by Laura at 12:17 PM
Wednesday, June 16, 2010
This is the boys on their final ride home from our very last day of the Mt. Washington Pediatric Hosptial's Outpatient Feeding Day Program. They were very happy, we are very happy.
We were discharged today having reached almost our goals. To refresh your memory the goals for the boys were:
1. Increase solid food intake to an average of one ounce puree/soft solids per meal. (This from a starting point of 0grams, literally they ate no measurable amount of solids at any given time under any given consistent circumstances regardless of everything we and our OTs and STs have tried.)
2. increase liquid intake by 50% over 2 day baseline. (Again, their liquid intake was not a consistent measurable amount, and even on good days at home it was rarely more than an ounce or two maybe once a week.)
3. demonstrate appropriate self-feeding skills with utensils 10x per meal. (This was not exactly demonstrated by Evan though I think that we may have found a method of reward that will encourage him to try this as he becomes more comfortable with eating and develops preferences. But Cameron can do it with Chicken & Stars soup if he is allowed, though not well.)
4. demonstrate an average weight gain of 5 to 10 grams per day.
5. present with 80% appropriate mealtime behaviors (that means that 80% of the time that the child touches a food they have an appropriate and favorable response to food which includes licking, sucking, touching with hands or lips, etc.)
6. Caregivers to be trained on feeding protocol and be able to implement the protocol independently.
7. This applies to Evan only because he does not put food in his mouth and tolerate it at all, unlike Cameron who is now willing to put solids in his mouth. Evan will demonstrate emerging lateral processing skills with meltable solids, 10x per meal. (This was achieved with purees that are of a Stage 1, 2 and some 3 levels. But it was not achieved with crunchy solids because we were not able to get Evan to put solid crunchy foods in his mouth all the time, but it is emerging and there is some more tolerance of putting the food in his mouth to explore.)
We will continue to follow the protocol that the program has developed for us because it does work. And it works VERY well. And they boys REALLY get it, they really do understand that in order to make us happy they have to comply with our request to eat before they can have their reward. But like everything in a toddler's world, everything must be done in moderation lest you burn them out. So we will continue to encourage more steps of the required behavior before giving them the reward by asking them to take instead of only one bite or sip, to take three or four or five bites or sips before they can have their tv show back on or their toy returned to them. And when I say they get it, I mean that they only have to notice your hand moving towards the pause button and they will instantly open their mouth wider, lean forward, and attempt to get the food to their mouths as fast as possible, all the while staring at the tv screen. In fact it almost works too well because when we present crunchy foods the boys need us to turn the tv off so that they can focus and make the decision to want to work with the crunchy foods, because with the tv on or the toy present they have a distraction that is more tempting than the stressful decision and action of working with the solid crunchy food.
So does this mean we always have to have tv on while they are eating?
For now yes. We can go out to restaurants or friends and family and not have a tv and just use toys as their reward. But the toys don't always work and we have to carry around a lot of small toys to cycle throughout the meal for each child. We do have a portable DVD player that we can take with us. But as of yet, this method of eating has not exactly been tested outside of home and the feeding clinic. We will continue to tweak and improve on our method, but eventually the idea is that they are young enough to make a smooth transition from eating because they want the reward of a prize to eating because they like and want to eat; since formerly they could not and would not associate eating with comfort and pleasure. Cameron does now tell me he's hungry and thirsty, and Evan gets the concept but has not had to put the process of asking to the test since his verbose brother does the work for him.
We will continue to have feeding clinic outpatient sessions but they will only be once a week. And they will be at the satellite facility that is located in the PG County Hospital. The reason we will be going there is because A) it's only 15min from home on an easy straight shot with little to no traffic, B) we have worked with and also really like the OT and ST at that satellite office during our 10month waiting period to get into the Feeding Clinic so they know us and we know them and there should not be any stress with the boys being reintroduced to these therapists. We will have follow up appointments with the whole Feeding Clinic team in six months in September and then we will review where we are and whether we need more intensive therapy or if other more significant changes need to be made to the boys protocols.
Was it worth it?
The short answer is yes, I do think it was worth it. Both boys now eat 2oz of a pureed food by spoon and anywhere from 1oz to 4oz of milk four times a day (breakfast, lunch, snack, and dinner) and they are experimenting with solid crunchy foods willingly. Feeding the boys is not as stressful, not as much of an all out battle that I had to mentally as well as physically gear up for. There is consistent improvement in what they eat and how much they will eat. If we continue at this pace I feel like we theoretically could be off feeding tubes within the next year. And the boys will be eating all the same foods their peers will be eating by kindergarten.
Without the psychologists understanding that the root of our feeding issues is the anxiety that the boys have at the sight of the spoon and ways that we could positively work through their anxieties in ways that set them up to comfortably succeed and allow themselves to trust and be challenged without fear is for us the world of difference. It was a very fine line between forceably feeding my toddlers and giving the boys control and choice and the ability to make their own decision about accepting food that is offered. I could not have done the hands down procedure on my own in the initial phases. I wish that I could have video taped the hands down process to show you how scary it was to see, even knowing in advance what would be done and how, that the boys had natural ways to show the psychologist that they would not try to eat so that he would see the cues and know to stop and let go of the child. They could have refused, screamed, made themselves hysterical for as long as 30minutes refusing the entire time they were pinned to a chair by another adult unable to move anything but their mouth and they could have refused to open their mouths. But in the end after only less than 28 very loooong seconds (yes, I literally counted them) they did open their mouths and did willingly take the spoon of food. And within 24 to 36 hours they were both willingly taking spoonfuls of food that they would otherwise have swatted away without even looking at them. Even today I do have moments with Cameron that I have to pin his arms down with my hand and use that same forearm to hold him back in his seat while he shakes his head from side to side crying and screaming at me no. But then he does take the bite and I let go and turn on the tv or give him a toy and he's all smiles and happily accepts the next bite. And ever since the hands down protocol the boys food consumption has improved by leaps and bounds.
The long answer is that I think it depends on each individual child and their different issues, what their parent's involvement is and how well they grasp the scope and difficulty levels their child is dealing with. There are so many different eating disorders that I can't competently describe who would be a good fit for a feeding program. There are kids that look healthy and actually do like to eat, but just won't eat enough to maintain the minimum body weight requirements to survive without feeding tubes and are simply not interested in eating and never feel hunger. There are kids that just can't bite down and need help figuring that out. There are kids that have swallowing disorders, aspirate food, overeat, swallow whole pieces of food without chewing at all, the list goes on. And the success of these programs requires that parents need to also be able to have patience and be consistent and persistent without showing frustration for excruciating periods of time measured in years because of all the different kinds of therapy out there, feeding therapy is the one that is hands down the most difficult. I often got the sense that the therapists had issues with some parents about their involvement and that parents often think that they drop the kid off and when the day is done they've learned to eat and they go on about their buisness, when the therapists really need them to come and observe what's going on to get feed back from the parents because only the parents can read the child's signals best since they are the ones who know the child best.
For a program like this to work it really depends on the child being able to self soothe or at least be able to be redirected and calmed down so they can begin to move on with their day, the parents really need to be out of the picture and the kid needs to begin to learn to deal with life in this safe environment so they can begin to make choices without being influenced either directly or indirectly by a familiar person. It's immensely helpful if they have the ability to understand simple one step directions like "Take a bite. Touch the chip. Stir the soup. Open the box.", know their body parts (ie. mouth, nose, teeth, lips, cheek, tongue) as well as action words like touch, lick, kiss, bite, and being able to count even if it's only to the number three. This way the therapists don't have the additional hurdle of teaching these concepts in addition to teaching the child to tolerate and accept the actions leading up to their interactions with food. I think for us it worked because the boys had just learned all these concepts, gotten over their severe stranger anxiety, and needed people who could take them out of their environment and set up new expectations for them to follow so that they couldn't fall on their reliable behaviors to get them out of eating. And in our case it was a very fine line between force feeding and removing automatic defense mechanisms so their brains could decide what was best for them.
We will continue with our weekly OT sessions with the Infants & Toddlers Early Intervention program and go back to weekly feeding therapy sessions with the Feeding Clinic's satellite location. Like everything else in the boys lives it's still a dance, two steps forward, one step back. We are expecting there will be setbacks, the boys will mature in their own different ways and get wise to our methods and we will have to work with the psychologists and behaviorists and therapists to stay on top of this. The tv and toy reward protocol wont always work, but hopefully we're creating a foundation for them to develop solid pleasurable experiences with eating and once those skills and senses are formed and the pleasure of some things food related will be mapped to the brain permanently.
If they told me today that they thought the boys could be eating a hamburger on their own by the end of August I would happily continue doing this program every day. But it is VERY hard on a toddler to do this program. By today the boys were exhausted, cranky, unwilling, and generally miserable. If the commute was less than 30 minutes one way I think that would make the experience very different. But my boys are troopers and managed to last it out the whole six weeks (actually seven if you count the week of their horrible virus where we missed clinic to stay home and get better).
Every single person on staff was so nice, very understanding, and really do love kids and has shown personable interest in seeing the boys do well. They all sought feedback from parents on how to deal with each child in the most comfortable way for the child, but they also would not let the child get away with any unhealthy behaviors that would thwart the eating process. The playroom staff are very good with my boys and they genuinely liked Ms. RayRay and Ms. TeeTee and learned that someone other than Mommy and Daddy and Granny can help them when they are sick and can help them go to sleep for nap time. They made the boys day fun and helped them with their social interactions with other kids. And the fact that Evan has to be re-sleep trained because the staff had to rock him to sleep occasionally is no big deal. Hell, I know how hard it is to get two two year old toddlers attached to feeding pumps to take a nap, and they have ten kids of varying ages and disabilities to deal with. Re-sleep training my boys is small potatoes.
Most of all I must mention the program nurse. Because of her understanding of the boys life experiences with medical staff the nurse Mrs. Michelle above all others (outside of the feeding therapists and psychologists) was able to impact the boys in the most surprising and blessedly helpful ways. Nurse Michelle was able to help the boys learn to trust her, learn to tolerate having their temperatures and other vitals taken several times a day, let her use a stethoscope on them without screaming in abject terror, be stripped down to their undies and stand still on a scale, have someone other than Mom and Dad touch their MicKey buttons, and.... SHE EVEN TAUGHT THEM HOW TO TAKE ERYTHROMIACIN BY MOUTH!!!! Her patience dealing with the boys made Evan's trip to the ER and the subsequent doctor's visit for both boys afterward bearable and totally doable by one adult.
The program has improved their lives, and while the things I've listed as improvements are small or odd, they are major improvements and make our lives much better. So yeah, I liked this program. And it's very possible we will have to do it again one day. But I will not be nearly as stressed over it the next time.
Monday, June 14, 2010
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.
Saturday, June 12, 2010
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
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.
Posted by Laura at 12:55 PM
Thursday, June 10, 2010
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.
Posted by Laura at 8:42 PM
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?
Posted by Laura at 12:23 PM
Wednesday, June 09, 2010
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.
Posted by Laura at 9:35 PM
Thursday, June 03, 2010
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.
Posted by Laura at 9:49 PM
Wednesday, June 02, 2010
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....
Posted by Laura at 12:58 PM