Friday, May 21, 2010


Well. It has been a very eventful week, some very good, some very bad. And we are ending it with a whole bunch of bad. Today we went to "school" and Cameron was fine but Evan was in a very grumpy tired mood which I attributed to the copious amounts of drool indicating he was teething. He had a lousy time at breakfast, we gave him tylenol and he did better through lunch, napped for almost 3 hours, did pretty well at snack. The playroom staff told me that 4 of the 10 kids in the program were out sick today so there is definitely something going on. Just as I was putting him in the car for our long drive home I noticed he felt really hot. In the car he was lethargic and moaning the whole ride home until he fell asleep 5min before we pulled into the driveway. He woke up out of the car and we checked his temperature.

At 5:30pm I checked his temperature several times over 10min. It went from 100.1 to 101, to 102.3, to 103, and then 104. I gave the tylenol at 5:40pm and while he was very slow and definitely obviously not feeling well he was playing and talking and he even ate 25grams of puree zucchini. He refused milk but did drink a tiny sip of water. After dinner he had a temp of 100.1 again. And he was in good enough mood to sit with us and read two books before flopping down in my lap like a rag doll. He went to sleep immediately at 7pm and I just checked his temp again at 8pm and it's 101.7.

I'll wait till 9:30pm to give him ibuprofen. Hopefully this will subside and we won't be making a trip to the ER or urgent care.

I have lots to update from this week's progress, which really has been fantastic. But it will have to wait for now, I'll try to do an update maybe tomorrow.

Thursday, May 20, 2010

If there is a Heaven....

I am not religious. But.... If there is a Heaven then the pearly gates are particularly busy this week.

A week ago good friends of ours had their second baby, a boy named Finn. He's a beautiful full term healthy baby boy. ( I love that I get to type the words "full term" about people I know and care for.) Welcome to the world Baby Finn, your big sister Zoe has a lot to teach you. We are all so excited to meet you.

Two days ago my Preemie Parent friends Martha and Robbie had their second baby, sweet little Maggie, baby sister to Campbell who was a fellow 28weeker like my boys. All our Preemie Mom friends have been living every moment of this pregnancy vicariously through Martha, all of us waiting on pins and needles, with baited breath. Patiently we've been enjoying hearing of a woman truly reveling in her FULL TERM pregnancy with only a handful of scares from a possible reoccurrences of pre-eclampsia, which thankfully did not cause any complications. Welcome to the world Baby Maggie. We're so excited to meet you this summer!

But tragically the pearly gates swing both ways, and today my friend Tiffany lost her baby boy Justice at 20 months old. My heart beats with heavy sobs for Tiffany and her family. As of yesterday JW seemed to have been doing better with his breathing so today's news that he has passed on is devastating.

Please go hug and kiss your children one more time today. Life is so precious.

Tuesday, May 18, 2010

A New Old Trick

Monday and Tuesday have been better, but we're still struggling at night with vomit and teething. And then there's the one hour one way commute that has been a bear in the rain that we're having this week. The boys however are really doing well. Cameron has REALLY grasped the requirement that he must accept and swallow the food offered on the spoon before he can have his toys back to play. Evan is much more stubborn but also is grasping the concept well so that he's now opening his mouth willingly three out of ten times. But it's still very slow going and requires at least two people to feed one kid with this protocol. We would like to see the boys increase the volume consumed per spoon (they take about a half a spoon each bite) and the number of bites they take to where they are consuming at least 80% of one smooth food item before we move on to more difficult textures.

One amazing new trick that I did not know the boys would do is take medicine by mouth. They have not been able to tolerate this since before they got their feeding tubes. Today the nurse told me that she decided to try it and see what would happen if she used the feeding protocol to administer .3mls of Erythromiacn and that it's worked every day for a week. I was stunned that it's working. In my mind the last test of getting off the feeding tubes would not just be that the boys could show they were getting enough nutrition by mouth for up to two or three months before removal of the tubes, but that they would also have to tolerate taking all their medicines by mouth as well. Erythromiacn is a very smooth medication that is bubblegum flavored so that's part of the reason that the boys are able to take it. If it were Prevacid they would have more of an issue with it because it's a difficult medication to administer since it's a soluble tablet which is something the boys can't tolerate, and if we were to dissolve it the granules would be too much texture for them and they would gag and likely vomit because of the gag reflex. We used to give Prevacid by mouth when they were very tiny so I'm very well versed in all the ways you could possibly administer this medication and I'm pretty certain that we are a ways off from giving that by mouth. But it's very promising that they are willing to take the Erythromiacn by mouth.

Sunday, May 16, 2010

Still Wonky

Sunday the boys woke up at 5:30am and were in pretty good moods, if not a bit whiny. They flat our refused to eat pretty much anything other than to drink some milk, though nothing outstanding. It was pretty much a huge frustrating battle all weekend long,and even though I did have some great meals for each kid, they really made me work to get it in them. At least the only vomit today was from Evan gagging after I put a sneak attack spoon full of butterscotch pudding in his mouth. Last night was rough, for some reason Evan pooped and woke up from it at 9:30pm which made the poor kid restless until he finally fall asleep at 11:30pm. Also, this morning they crashed at 9am, Evan for two hours and Cameron for only one hour. They went to bed tonight at 7pm and hopefully they will sleep like angels and wake up when we are on the road and halfway to school tomorrow morning.

Saturday, May 15, 2010

Cross Your Fingers!

Today the boys woke up cranky again at 5:30am. They were very combative when I tried to feed them breakfast, though they drank about 1oz of milk each. Cameron did throw up more clear stomach fluids, neither had a fever, runny noses have somewhat subsided, the guys looked like they felt miserable, and both boys went down for two hour naps at 8:30am. They woke up and Drew tried to give them lunch which was a miserable experience. Then Cameron went back down for another nap at 1:15pm and slept until 4:10pm, while Evan was a fireball keeping Drew on his toes all day. Drew tried several times to get Evan to take another nap, but Evan did not think that was such a hot idea. When Cameron got up he told me very clearly that he was hungry and wanted milk (pronounced "Mick"). I gave him 4oz of milk and he drank it all in under 30min while watching The Backyardigans. Then he told me he was hungry and I tried to feed the boys dinner around 5:30pm. He drank another 3oz of milk, ate about 20grams of Chicken & Stars soup (this may not seem like a lot but it was baby spoons loaded with actual noodles, carrots and celery and not just the broth by itself which is usually all he wants), and 4 veggie sticks. Evan drank about 16 baby spoons full of the Chicken & Stars broth which is more than he's ever had in his life, but fell asleep mid-sip of broth on the 16th one. He drank lots of milk today too, about 5oz which is a lot for him. Since Evan went to bed at 6pm we kept Cameron in his highchair playing with a toy while we adults ate dinner. He demanded more milk and drank another ounce plus ate three cheese puffs.

There's something to be said for a stomach virus and a 5 hour nap. It makes a toddler eat more than he's ever had in one day. Now he's finally asleep by 7:45pm and has been on his feeding pump at a very slow rate since 6pm. Please cross your fingers that he doesn't upchuck everything tonight.

Friday, May 14, 2010

Update to Day 13

During lunch Evan told me "Head boo boo" and was whiny and rubbing the sides of his head and generally very obviously feeling miserable. Cameron kept asking for Night Night so I put them to bed after giving them both some Tylenol. Cam slept for another three hours (in addition to the 40min the boys both slept on the car ride home), while Evan became hyper and pooped and became even more hyper. Once I finally got Evan down for a nap at 1:30pm Cameron woke up at 2pm. When Evan woke up he had big red splotches all over his face and lots of little red pin-prick dots on his back and belly and behind his ears. Neither boy had a fever or was acting very differently from normal. We gave them a bath and noticed Cam had a few red splotches showing up on the side of his face too. That's when we decided to give them some Benadryl before bed. Within 10min we noticed the red splotches fading. We've gone over and over and over the day's activities and what they might have consumed (nothing measurable for sure) and can't figure out what could have caused the reaction. Guess it's just as well that we came home today.

We're having a really bad thunderstorm tonight. Our two beasties are scary if you don't know them, but have a thunderstomr come rolling in and this is where one of my large hairy chickens likes to perch for her safety...

Day 14 - Oh no!

Last night both boys vomited in their sleep at the same time with no warning for us. This is not uncommon so we didn't think much of it. Then this morning Cameron was grumpy when he's usually a chipper morning person. He screamed a couple of times like he was gassy, and then he puked a handful of stomach fluids with big green loogies (sorry for the TMI). I checked his temp and he was fine no fever. I checked Evan just because he was right there and he had a teeny tiny fever of 99.4. But they seemed to be doing fine so we loaded up in the car and left for "school". During the ride Evan was a chatty thing that could not sit still, very unusual for him because like me he's not a morning person. And Cameron, who is usually loudly pointing out every.single. truck/school bus/train/plane, was trying to fall asleep but struggling to do so because Evan was keeping him awake. Not five minutes away from the feeding clinic parking lot and suddenly with no warning Cameron puked lots of clear stomach bile (not the really nasty green stuff we used to get, but it did smell like it). Once we got into the building the nurse took their temperatures again and we agreed with the Director of the program Dr. Katz that it didn't appear that he was ill, just really having a rough day and didn't want to be there. So we decided to see how breakfast went and then if it didn't go well I would take them home to rest for the weekend. Cameron barely got out of his stroller and even laid down on the hallway floor in protest of being at school, which he never does. We then changed the plan so that Evan would get fed breakfast and I would take Cameron to the cafeteria to wait out the traffic before heading back home. The whole time in the cafeteria poor Cameron just wanted to snuggle in my lap.

We picked Evan up after his very unsuccessful breakfast and headed home. The boys fell asleep for about 40 min until we got home around 10:15am and I let them lay on the floor and watch tv for about 20min and then got things ready to attempt a lunch since they haven't eaten since midnight last night. I got as far as setting up the highchairs when Cam threw up again and asked to go night night. Evan had become more and more fussy and started telling me "Boo boo head, boo boo head" and rubbing his eyes and sides of his head. So I doped them both up on some generic Tylenol and Cam went to sleep at 11:30am and Evan pooped, so now he's refusing to nap but is happily playing in the playroom and watching Dora while his brother gets his nap.

Hopefully this stomach bug Cam has is over quickly and Evan doesn't catch it. And that we can get back to the feeding clinic to pick up where we left off. I was so looking forward to getting the boys to school today to reinforce the great day they had yesterday. I guess it was not to be...

Thursday, May 13, 2010

Day 13 - Hands Down Feeding

So as of today Cameron has had six sessions of the more aggressive method of positive reinforcement feeding. This is where they present him with a toy or tv and then take the toy or tv away and say "Time to take a bite." and hold the spoon to his lips while someone else holds him in place from behind so that he can't use his Ninja skills to swat at the spoon or thrash his head from side to side. He has the choice to keep his mouth shut or open it up and eat the food. If after a minute he still refuses they let him go and remove the spoon and change the mood to redirect his attention to something pleasant and then re-present the toy or tv show that is of most interest and try again. BUT if he does give in and open his mouth and swallow the food he gets the toy right away with lots of praise and the hands preventing him from escaping or swatting are instantly removed. This method allows us to provide him with an opportunity to make a choice without having his body instinctively react preventing him from ever getting a taste to learn if he likes and can deal with the food in his mouth. Basically it's stacking the deck in our favor so the only thing the child has to do is make a choice. Either way he gets praise and if he makes the right choice he gets a reward. Eventually he would associate eating with pleasure and reward and there would be no need to do anything but offer him the food to eat and he would eat it. Easy enough, right? ;-]

I asked the psychologist how do they know if this method is working and he said that the first sign is you should begin to see a decrease in the amount of time between when the spoon is presented and the mouth willingly opens. Then everything after that should follow through. If it didn't work the child would always refuse to open his mouth and he would continue to be upset about just one attempt of this for a long time afterward, even if ten minutes has passed since the attempt and you've moved him into a different room. The doctor felt that with my boys and in most kids you will typically see improvement after about 6 to 8 sessions of this method.

Last night at the dinner time feeding at home (he'd had his first three sessions of the Hands Down method during the day at feeding clinic) he was very upset, very frustrated, almost angry. He was flinging food and yelling and in general being far more uncooperative than usual, refusing pretty much all the food other than a few tastes but drinking a whopping 4oz of milk. Periodically he would say "Applesauce!" over and over, which was the food they had been feeding him at snack time where he'd fought them the hardest so I think that he was reminiscing about his day and telling me he remembered what happened.

Today I did not get to watch Cameron's breakfast because he was in a room without an observation window, but I was told later on that he ate four bites of yogurt without being held and even took a couple of those bites by handing back the toy and leaning forward with his mouth open! :-O

At lunch I missed out on watching a near perfect feeding session for Cameron because I was sitting in a parent chat session with some other parents of kids in the program. That was a really great chat we had and it was so nice just talking to other parents who have been where we have, who are struggling with the same issues we are, and who are at different stages in the program, one of whom is back for a second go around after a previous 9 week session that was tremendously successful and they are hoping to accomplish a bit more with this session.

During lunch Cameron only had to have his hands lightly touched and he willingly at every single one of his ten spoons full of mashed potatoes and gravy. :-D Again, on a couple of instances he even handed back his toy and leaned forward with an open mouth for his next bite!!!!!!!!!!

At snack time I think he was feeling a little cranky because he had to be held four times, but then began to willingly take the offered food and never lost the option to play with his toy. So it's okay now, you can go ahead and cry. I was sobbing. I am sobbing. It is working.

Evan is having a much more difficult time of it today, but I am keeping in mind that today was the very first time we've ever attempted this Hands Down Method that we are doing with Cameron. And Evan is definitely the more difficult one to convince, he's so stubborn and determined. And he has a much stronger gag reflex. My poor little Dragon.

But... BUT BUT BUT BUT.... At dinner tonight both boys ate! And I mean more than my sneaking in a spoonful while they are distracted. I simply presented an item they wanted just out of reach, said "Take a bite." and like a little bird Cameron opened up and ate six full baby spoonfuls of mixed veggie puree before eating four Gerber Lil' Crunchies Cheddar Cheese Puffs and then three spoons of butterscotch pudding. Evan was more difficult and he fought my holding his hands down (very difficult to do by one person who's also trying to get food into his mouth). But he did actually willingly eat four baby spoonfuls of the mixed veggie puree and two of the butterscotch pudding.

They are eating!! My boys are eating!! I can not wait to take them to feeding clinic tomorrow.

Wednesday, May 12, 2010

Days 9, 10, 11, and 12 - Stepping it Up

Last week on Day 8 we had the first of our Family/Feeding Team Review of how the boys have done the first week and what the next steps will be in our plan.

Cameron’s Review:
Long Term Goals (these are subject to change throughout the program based on his achievements within this list):
Cameron will increase solid food intake to an average of one ounce puree/soft solids per meal. (He does not consume more than small tastes on a baby spoon at the moment, but he consumes them and does not gag (anymore, he once had a horrible gag reflex that suddenly almost disappeared,) or spit them out which I’m told is the first of many tiny steps to achieving this goal. His actual consumption of solids is about .1oz per meal on average. )
Cameron will increase liquid intake by 50% over 2 day baseline. (Currently he’s consuming about .7oz of liquids per meal. This should be easy enough I think, right? He regularly drinks at least 2 oz at home so I’d be thrilled if he could finish 4oz. At “school” (aka Feeding Clinic) he’s consuming between .5oz and 1oz.)
Cameron will demonstrate appropriate Self-feeding Skills with meltable solids, 10x per meal. (He’s easily demonstrated that he can do this, having eating upwards of 7 cheese puffs and 10 Cheerieo’s. Now we just need to get him to do this every meal.)
Cameron will demonstrate emerging lateral processing skills with meltable solids, 10x per meal. (Again, he’s doing it all of the sudden but not consistently and not at every feeding session.)
Cameron will demonstrate an average weight gain of 5-10 grams per day. (This is not happening yet, in fact he’s lost weight. Starting at 12.05kgs on Admission Day 4/27/10 - that puts him at the 31st percentile for kids his age, with his weight on 5/6/10 being 11.85kgs. This is a loss of 200 gms since Admission Day. Not a lot, and not surprising considering he’s had a runny nose causing lots of reflux vomit at every feed and at least once a night. We’re watching it and expect it will go back up soon.)
Cameron will present with 80% appropriate mealtime behaviors. (Yeah, not so great. His average is at about 59%. The important thing to keep in mind is that this is all done in baby steps and he’s showing that he’s willing to be there, wants to make his therapists happy and is showing effort in his compliance to what they are asking of him, just not all the time. He’s a toddler with anxieties and fears and issues with eating. No one can blame him for throwing a temper tantrum when he’s frustrated, but we are also working with not throwing food and toys. The new goals for this are to get him to consume .5oz of solids per meal with lateral processing of crunchy or soft foods 5x per meal,, 1oz of liquids per meal, and appropriate mealtime behaviors 70% of the time.)
Cameron will be trained on feeding protocol and be able to implement independently. (This means that they are working on teaching him a pattern to proper eating behaviors and a reward system for doing what is asked of him. This is really going to take the whole feeding program and probably beyond before it’s actually mastered.)

Because of the increased frequency of vomiting, how much he’s throwing up, the amount of weight he’s losing we are going back on Erythromycin at a very low dose and will work up on dosage based on how much or little he vomits to increase the motility of the foods processing in his stomach and gut. We’ve been on this before and did not see improvement. We’re willing to try it again if it works, then great.

Cameron will also be attending a Sensory Motor group activity 3x per week, which is super fun because it involves a very big ball pit and lots of other fun very tactile things like that. He will also be getting Speech Therapy 2x per week (1x during one of his Sensory Motor group sessions and 1x in a Speech group session that involves singing, signing, and other language activities). I will say that since we’ve started this program he’s become quite fearless, climbs even more stuff, touches more things for longer periods, and while he still startles easily is much more brave about new things and events.

Because Cameron was so over stimulated by all the activity in this new environment the 11:30am lunchtime session was becoming a problem because he was so tired and falling asleep in the feeding session. The team decided to move his lunch to 10:45am and this has made a big improvement. Immediately following lunch he will go nap on his cot for as little as 30 mins (Yikes!!) to as much as 3 hours (Yaaaaaay!!) and his best feeding session of the day is always snack time. This makes me happy because what normal toddler doesn’t enjoy a fun snack?

Nutritionally we have had to make big adjustments to both Cameron and Evan’s G tube feedings because of the lunch schedule change. We were giving them a 200ml bolus from 9 to 10am, but because lunch was bumped to 10:45am they would not be hungry. So we have dropped the morning bolus, added an extra 50mls of formula to the volume of the noon/nap time bolus, plus added two scoops of DuoCal to the noon/nap bolus. We also added another 50mls of volume and two scoops of DuoCal to their evening/bedtime bolus. This allows Cameron to get the 900mls of nutrition he needs (about 1150 - 1200 kcals/d) each day without impacting the feeding sessions or making him wear a backpack all day long.


Evan’s Review:
Long Term Goals (these are subject to change throughout the program based on his achievements within this list):
Evan will increase solid food intake to an average of one ounce of puree/soft solids per meal. (Evan has flat out refused very nearly everything that has been offered to him with the exception of some sips of milk. Seriously, this kid must be so parched all the time, you would think that chugging some milk would make him feel good and that he would enjoy this. Apparently he does not see it like this. In fact in the first 8 days of the program he did not consume ANY measurable amounts of solids and only .39oz of liquids. I must at this point tell you though he’s refusing, and has been nicknamed the King of Avoidance with a mean left hook by the Director of Psychology physician who also happens to be his primary therapist, he has willingly put some food items in his mouth. He can bite the food items fine but doesn‘t; he’s terrified of what happens when food gets in his mouth. He does not however, spit it out or try to push it out with a finger, he just gags and vomits or swallows the offending food. This I’m told is the miracle that is our proverbial foot in the door with him. And to be sure this is my child, he did just yesterday put an entire Oreo cookie in his mouth and attempted to bite it for his therapist. I promised Evan that if he would eat one whole Oreo that I would gladly go and buy all the Oreos in the world and share them with him. Hope he likes the Double Stuff like his Mommy.)
Evan will increase liquid intake by 50% over 2 day baseline. (This should happen with time. They had both boys on Boost Kids Essentials (the 1.5 calorie mix not the standard 1 calorie mix) and Evan seemed to truly dislike this formula milk. So in an effort to try to make him more compliant we switched the boys to Whole Milk with a packet of Carnation Instant Breakfast Vanilla powdered formula mixed in for the extra calories because Evan willingly drinks far more milk at home on a regular basis. He seems to tolerate this better but not in the Chocolate format.)
Evan will demonstrate an average weight gain of 5-10 grams per day. (Evan is succeeding in this, gaining about 25grams per day, but not because he’s eating more by mouth. He’s just not been vomiting as much as Cameron. Because he’s gaining so much we may cut back on the volume he’s getting in his G tube feedings, which is always a good thing because its less to vomit, less time on the pump, less for him to have to wear as a backpack.)
Evan will present with 80% appropriate mealtime behaviors. (His compliance behavior is at 63%. He licked cinnamon spice oatmeal once, cookies, and cheese curls and allowed a dry spoon to be brought to his lips 5x. Goals for this week and next will include increasing compliance level to 65% or above, licking 2 novel foods 5x or more, and opening his mouth for a dry spoon at least 3x. On Sunday this week Evan was very excited to put his father‘s pizza in his mouth and got about 6 to 8 tastes of pizza cheese and sauce. Baby steps.)
Evan will demonstrate appropriate self-feeding skills with utensils 10x per meal. (Yeah, not happening. Maybe 2 to 4x per meal. Though last night he helped me spoon about 8 baby spoons of syrup from diced peaches cup into his mouth. The boys call the syrup “sweet” and will ask for “More sweet.” )
Evan will demonstrate emerging of lateral processing skills with meltable solids, 10x per meal. (Not happening well or often, but he can do it and has been really playing around with his tongue in his mouth this week. Hopefully that’s a sign that he’s ready to try. The psychologists have told me their goal is to get the boys to try new things in a controlled setting, specifically with the hopes that the new thing makes them gag a little but just enough that they learn how to deal with it.)
Evan will be trained on feeding protocol and be able to implement independently. (They just need to get him to stop throwing things off his tray for starters.)

As I mentioned before, the boys are so over stimulated and excited in “school” that they are falling asleep in their lunch sessions, even once they started having them earlier at 10:45am. But Evan is really struggling with this so much so that there is concern that this is /has become a behavioral reaction to his anxiety about eating. There is a term for this called Somnulent Anxiety. The psychologist is not going to say yet if this is what Evan is doing, there are a lot of factors that can cause this reaction and the timing of this particular behavior only seems to happen at lunch, right before naps.

Somnulent Anxiety, as it was explained to me, is an old terminology that doctors came up with to explain why some infants when presented with a situation that they are so anxious about that they need to escape, will turn their heads and go to sleep. Evan is sort of done something like this and on occasion when the therapist things he's asleep and gives up on lunch and takes him back into the playroom for nap time he perks up all of the sudden. But, Evan has not been sleeping well, still vomiting at least once a day usually at night in his sleep, often wakes up repeatedly between 4am and 6am, has an hour commute one way,and spends several hours playing hard in this very overstimulating environment. And this behavior tactic is usually only done by much younger infants because they can not escape or remove themselves from the situation, but then even though Evan could get up and walk away from the table he's strapped to a highchair or booster seat so this explains why it is a possible behavioral diagnosis. And lastly, both our EI OT and ST have witnessed Evan falling asleep during therapy sessions at the exact same time of the day with less activity and stimulation all morning prior, and have seen him perk up the minute we pull him out of the therapy session, though this was rare. If it was really Somnulent Anxiety behavior then why doesn't he do this at breakfast, snack time or dinner? We have a lot to take into consideration before really applying the description to him as a diagnosis.

This week we have stepped up to more aggressive feeding therapy tactics. Specifically with only allowing the boys to have access to toys during meals if they take a bite or drink. Also, we are working on a "hands down" protocol that will hopefully get the boys to realize that while they are very talented at swatting food out of their faces, it's not acceptable and they need to eat what is being offered. To do this the therapists will work as a team of two during a feeding. One will feed while the other stands/sits off to the side. The one to the side will only touch the child to hold his hands down on the table until he chooses to take the offered food by the therapist feeding him in front. Initially this does require a couple of what looks like "force fed" spoons where not only are his hands held down but they may have to use the adult's forearms from behind to hold his head and shoulders in place so that the child can't thrash around. Someone watching this without knowing what to look for would certainly think this is force feeding and cruel. But in reality he has the choice to not open his mouth and they will take the spoon away after a full minute, and the person holding him down will let go and step away. All the while this is going on he's getting lots of praise for good and acceptance behaviors as well as rewards by having access to toys or music or bubbles or the television. And today was Cameron's first go at this. And after three tries he did willingly take the offered spoon and guide it into his mouth and pleasantly eat the pureed carrots. And for this excellent compliance Cameron received lots of bubbles, toys, cheers, praise, and the general hoopla that he enjoys. Hopefully he will get the idea and the ninja arm swatting and pushing will decrease and/or go away. It will take some time.

We will try the same tactics with Evan this week too, but probably at a much slower pace as Cameron seems to really understand what is expected of him and does not complain much at all and when he does it's kind of half-hearted. Evan seems to actually get furiously angry and so this tactic may not work on him and we'll have to find another way to positively reinforce good eating behavior.

On a side note, after about 6 months of trying and trying and many mouthfuls of nasty liquid soap, Cameron has finally managed to blow his very first bubble on his own. He's quite proud of himself. I am too.

Also, Evan had a very rough morning today and I had to do an emergency change out of his G tube AGAIN! This time though we could not find the leak in the balloon and have no idea why all the water in the balloon was gone causing the Mickey button to be pulled out when he fell on a pile of books stacked on their side this morning. He's been up since about 4am today. Hopefully tomorrow will be better for him.

Friday, May 07, 2010

Days 4, 5, 6, 7, and 8

*I was going to post this yesterday (we are on Day #9 today and I have more to update) but I was just desperate to get some sleep. I will try to post the results from our Feeding Clinic Family/Team review meeting and all the subsequent changes we're making tomorrow.

- - - - -

Yeah, it’s turned out to be more difficult to blog because I don’t have access to Blogger at the hospital because it’s a social networking site and all of those are blocked. What I am trying to do is type in Word and then copy and paste into blogger so that I’m keeping on track with my goal to blog about the experience.

In a nutshell the boys are doing well. The days are very long and they, and I, are exhausted. The commute is what makes the day so difficult because it is exactly an hours drive one way with little to no traffic, assuming that I leave by 6:45am. The commute home is worse and usually takes about an hour and a half, so as soon as the boys are done their snack therapy session I try to hit the road at 4pm or earlier.

There is also way too much stimulation for the boys all the time. They are not used to playing so hard all day long, interacting with so many kinds for so long, and then there are the demands of the therapists to eat which causes some pretty high anxiety. By Tuesday this week we decided to change their lunch from 11:30am (what we do at home) to 10:45am because they were falling asleep in the middle of or even before the lunch began. This has helped but only a little. Part of the issue is that they have a behavior of knowing that they can’t get down from their highchair, they don’t want to eat, they are already so exhausted and stressed, that the only thing they can do to refuse to eat is turn their heads to the side and close their eyes until they sleep. The therapists do everything in their power to give them toys to distract, be very animated and positive, but when you are done - you are done.

As of Monday Cameron has been happily chowing down on multiple pieces of Gerber Cheddar Cheese puffs. This is not really new news because he’s been eating as many as two or three a day before we stared the clinic. But now he can eat as many as 7 or 8 at a sitting and still drink a couple of ounces of milk in a sitting. He’s also discovered that he likes Cheerie Os and ate 5 for the therapist, then asked her “More Chee-o’s peese.” and ate 5 more for a grand total of 10. This is FABULOUS and more than he’s ever willingly eaten for me so it’s more amazing that he did it for the therapist. He’s also in love with Campbell’s Chicken and Stars soup and will happily attempt to scoop up to 4 or 5 baby spoons full with not just the broth (which is what he really loves) but the stars. On one occasion he picked a piece of carrot out of his spoon and I thought he would throw it on the floor but instead he popped it in his mouth, chewed and swallowed. He has refused any carrots since then. But he does love the soup and loves to watch me for a reaction which must be withheld until he’s successfully gotten some noodle stars in his mouth and he’s chewing them. Otherwise he thinks, “Oh, I got the spoon to my lips and she’s cheering, I’m done.” Cameron is not willing to eat everything, and not every session, but he’s very happy to play with the food and I am happy with that too. It’s not all sunshine and roses with him though, he’s still trying to refuse and really does not want to be fed, but will occasionally self feed a tiny bit. He’s like a Master Sensei and can swat your hand and spoon without even taking his eyes off the toy he’s playing with. The saddest part is that he will often say “I crying. All done.“ or “Find Evan, Eban stuck, find him, where is he?“ of “Mommy, Mommy Daddy, Mommy, Mommy” over and over. And he will do his best to swipe everything off the tray table often when he’s angry. But he does also tell them and us that he’s hungry now and will eat or drink something. Overall he’s doing exactly what we had hoped he would do in the first week.

Evan is not doing well. He’s over stimulated, over tired, over stressed, over anxious, over everything. But he loves the playroom and playing with his new friends (though at this age they don’t really play with people, they just play near people.) He is refusing everything and anything they offer him to eat regardless of the praise and distraction. He’s refusing the formula milk that they offer, I suspect because he just doesn’t like it. He drinks more 2% milk at home than he would drink this stuff. Today they will start switching him to Carnation Instant Breakfast Whole Milk because it has more calories and nutrients in hopes that he will like that taste better. He’s always stressed during the therapist feeding sessions, yawning, falling asleep, wiping his face and eyes, putting his hands in his hair and rubbing his head, or covering his eyes with his arm or palms of his hands to hide from the therapist. But the therapists are pleased because he’s not acting out in other more difficult and unpleasant ways.

You might be wondering what difficult and unpleasant ways they are referring to. I have seen some of the other kids throw food really hard, grab utensils to hit with, and cry non-stop hysterically until they are let out of the chair. And then there is little V. She’s a cute little girl, maybe a year older than the boys, she doesn’t speak and can eat food just fine but refuses. She screams a hideous scream like the character Banshee from the movie X Men. Its piercing, shrill, makes nails scraping down a chalkboard sound pleasant, and she can make it go on and on and on. She does this before and after every single bite of food, and it’s not like she’s getting slop, she’s got Lucky Charms, some Go-gurt yogurt, and a grilled cheese sandwich. I have seen that with her it’s truly the worst case of a power struggle of any kind. She is also manipulative and will try to distract herself and the therapists from the task of eating food. This is another good reason why the feeding sessions are done one on one with no other kids around to witness the behavior aspect.

The boys weights are slowly going down, but we are not concerned as it’s very slowly and we can chalk that up to the increased vomiting we’re seeing especially at night, and all the extra activity they are getting all day long.

Cameron: Day 1 (Tuesday) = 12.05 kilos, Day 4 (Friday) = 11.95kilos, Day 5 (Monday) = 11.85,

Evan: Day 1 (Tuesday = 10.8 kilos, Day 4 (Friday) = 10.8 kilos, Day 5 (Monday) = 10.95 kilos,

I am meeting some of the other parents of kids in the program, but it is awkward since you don’t want to invade their privacy but it’s nice to have a Parent Peer to talk to, someone who’s there doing the same thing you are in the same program. I spend a lot of time sitting in small dark observation rooms and in the large hospital waiting room with super uncomfortable chairs and a tv with bad reception and terrible programming. I have joined a gym to give me something to do and am taking at least one class during the morning, or one class or workout session in the afternoon. I had not realized how out of shape I really am. I jiggle in places that never did that before. I feel the strength in my body from having two babies and having to carry them and all their gear and double stroller, etc. But those are totally different muscles used other than the ones you use to work out. Seriously! It feels like I use different muscles and the ones that I use to run or bike or lift weights or do yoga are not at all used for caring for kids and so they are in pain from the gym.

But when I’m not observing the boys refusal to eat, or trying to pay homage to my former svelte 21 year old body by torturing myself into thinking I will one day be that shape again, or wandering around the Mt. Washington area eating the delicious food that I would otherwise not eat at home, I am sitting in a lobby waiting room chair typing on my laptop and chatting with parents who are bored to death while waiting for their kids to go through some kind of therapy.

(Warning: DO NOT read any further if you are feeling sad or just don’t need the Debbie Downer I’m about to give. I promise this next part will be sad. I did type this up a couple of days ago when I was feeling particularly exhausted and down in the dumps.)

Every day I come here to this hospital I am reminded how lucky I am and how easy these last two years really have been for me. Every where I look there are so many kids with far far FAR worse issues than what we have going on and I remind myself that I'm not worthy to sit with these parents and bitch and moan about our issues. If my boys don't eat, THAT'S OKAY. I can still feed them through a tube and they can lead otherwise normal and productive lives. In the grand scheme of things, the whole eating process can be viewed by many people (my husband included) as overrated.

Right now I'm sitting next to a father and son of about 6 years old. I have not spoken to them yet but I am watching them interact and keeping him busy. It is obvious that he has had brain surgery, that by the odd and over-pronounced shape of his head and face he has a genetic defect that is rare and beyond the Down Syndrome and Autism that he has. He has a spinal or orthopedic problem that he walks like he has a rod in his leg keeping it straight (he's wearing swim shorts, I don't see a brace of any kind) and moves like an old man with horrible arthritis. They are having a good time just playing on the floor together while waiting for his one hour hydro therapy session. It took five minutes for the little boy to sit on the floor by his own choice.

On the other side is a mother who's 5 year old daughter is an angel coloring at the kiddie table while her 9 year old Autistic brother is terrorizing the waiting area, shrieking like he's in abject terror and begging his mother to go home. He does not want to go to his sensory and PT therapy sessions. He is begging, pleading, hitting, and pushing his mother, the furniture, the wall, the vending machine. His mother has apologized a thousand times for his behavior.

Next to the little girl is a partially blind and Autistic boy who is 7. I met him and his mother yesterday. He is sitting to "read" a fabric baby touch and feel book that is worn thin, his lovey. Then he gets up and spins in circles to the left so fast that I'm getting dizzy and can't even look in his direction. He is waiting for his twice weekly feeding therapy because he only eats stage 2 purees and does not know how to bite or chew, but has stranger anxiety and needs strict routine and familiarity with his therapist, so he will be entering the program we are in the last week of our stay here.

On the other side of the lobby is an older man with his daughter who at the time I was sure had epilepsy and CP and some other issues stemming from these conditions, but after chatting with them learned that she was shot in a drive by when she was 9 years old and the bullet is still lodged in the base of her skull. He shared with me that 9mos ago she was caught in a drive by on the corner of their street in Baltimore. She still has the bullet lodged at the base of her skull. Nine months ago she could not see or hear, walk, talk, eat or breathe on her own. Today she is practicing hydro therapy by walking with a cane in the pool. She is getting her G tube out next month. She can see the tv and talk some basic words. The epileptic seizures it appears she's having they aren't sure are all seizures now, but mostly nerves reconnecting or attempting to, though they won't know for a very long time. Modern science is a wondrous thing. She's waiting for her PT session sitting in her chair drooling and watching the news.

Then at the far and of the waiting area is a lady with a triplet stroller and two infants in the stroller. I think that she is the grandmother, but not sure. I have not seen them here before, but the third infant is in an evaluation session for several services including feeding therapy because they've been sitting here for well over an hour. The two babies here are maybe about 9 or 10mos old and are AMAZINGLY behaved, sweet and very quiet sitting in the lobby reading board books in their stroller.

Then in the hallway is a little boy about 6years old who speaks no English, only Spanish and has classical Hispanic very tan coloring with a big beautiful smile and he is laughing. I know he has had a brain surgery (huge scars on his head) and I suspect was in an awful accident because he has Halo scars on his forehead and back of his head meaning that he had a traumatic neck injury. His face is raw and red all over the forehead, along the hairline and his ears and parts of his neck. I think that he has a skin condition or reaction, or they are some really well healed scars from a burn. He also has major motor skill problems but can walk in short bursts with help from a walker. He's working with a therapist to pick up a ball and throw and kick it up and down the hallway, and it is the highlight of his morning.

Sitting here I feel like we almost don't "belong" if you know what I mean. My kids are healthy and now can run, could self feed if they weren't afraid to do so and didn't vomit buckets every day, and are becoming more and more socially well developed and learning to talk. This hospital is mostly for children with major medical issues and the therapy required for their treatment. There is also a level III NICU here and I regularly see babies being transported in and out in ambulances. This I was not expecting to see. Every time I see it my skin crawls, I want to burst into tears.

And then there are the staff that work here, every one of whom I’ve come in contact with, seen in passing in the hallway is super nice and friendly and really wonderful with all the kids. They are saints because it takes a great strength to work here with these kids every day. The patience that all the feeding clinic staff have shown to this kids is brilliant and even in the difficult cases like little screaming V, they may get personally frustrated, but it’s never with the kids and I have never seen it in their faces or actions. That is the beauty of a program like this, because we parents have so much time and emotion and fear invested in our kids, we get stuck in ruts, we do everything we can though we’re not experts, we are exhausted. The team here has that luxury of being one step back. But I never get the feeling that they are here to just do a job. I feel like they genuinely care about how the boys are doing and what they are achieving no matter how small it is. They will try and try and try and try where I might have said enough’s enough about two tries back. There is even a weekly therapy dog named Katie Bell, a Pomeranian mix mutt, who comes to the lobby and lets all the kids play with her and I got to cuddle her a bit too. Felt nice.

Today we have our first Family / Team meeting where we discuss how the last week has been, what issues and successes we’ve got, and what our next steps will be. The doctors and lead therapists assigned to the boys will make changes to the behavior and feeding protocol and ask for our input too. I will probably do a separate post on this meeting, but it should be short, I think.

In the mean time, I will watch the boy spinning and Jerry Springer on the tv for a bit before watching the boys eat again.