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Tuesday, September 21, 2010

It Never Fails

Every time we have a series of days and nights without any episodes of vomiting for both boys I get excited and relieved.  That is until someone mentions or asks how the vomiting goes and I have to tell them the truth.  If it's someone who doesn't really talk to us very often I can just say "Oh, the same old same old one day at a time." and things go okay because that's how we live.  But it never ever fails that when someone close to us, especially people very involved with the boys from a feeding and medical standpoint, ask how things are going with the vomiting and I really do have to tell them the details that the reprieve ends.  Like clockwork.  A switch is flipped and the flood gates open.  We've gone almost a week without either of the boys vomiting in their sleep.  Today at our feeding therapy session I was asked how things were going and I had to tell the truth because the therapists and doctors need to know, and inside as I'm telling her the latest improved trend on vomit in our house I can just feel the good peaceful naps and nights slipping away.  Sure enough, at nap time today Evan threw up.  Nothing out of the ordinary for us, but it was almost a full week of no vomit which has now officially ended.  Back to the drawing board.  *sigh*

Saturday, September 18, 2010

Feeding Clinic 3mos Follow Up

Thursday we had our three month post-discharge follow up with our feeding teams at the Mt. Washington Pediatric Hospital Feeding Day Program.  It went better than I expected from a process standpoint.  As any mom who's taken more than one kid to a doctor's appointment knows these kinds of appointments can be taxing from a logistics and behavioral and anxiety standpoint.  But in rare form the boys were totally awesome, no tears at all, well behaved and generally happy despite that they were super tired and hungry.  They did the physical examination and then we met with the majority of our feeding team.  This includes one Nurse Practitioner from GI, one psychologist (because we'd just seen the Director of psychology the week before and he'd had another kid he needed to visit with at our appointment), one speech therapist, and one occupational therapist.  Our GI doctor who is the director for the clinic and the clinic manager could not be there as they had some other things going on that day.

It was nice to visit with the group, I really like the people we are working with, and so do the boys because they were friendly and very talkative.  So much so that the whole team was really impressed with the recent developments in their language and expressive skill and how comfortable the boys were to be around the team members in a close confined group setting.  

Overall the boys are doing great, though not gangbusters fast track to our other GI doctor's (we actually have two GI doctors working on the boys) six month goal to have the feeding tubes removed.  I'll talk more about that in a minute.

Evan's 3month post-clinic follow up stats:

Evaluation Findings:
a. Consecutive sip/swallow with straw observed
b. Continues to accept small amounts of puree
c. per report, continues to refuse all higher textures
d. parents continue to use feeding protocol at home successfully
e. difficulty with mealtime structure and routine (mostly due to recent illnesses)

Nutrition Per CDC Growthchart:
Weight - 11.5kg(23rd % for age) - *He was 10.9kg at the last day of the program, this is an average weight gain of about 6.5grams per day in the past 92 days.  Impressive considering he got two very dangerous high fever viruses during these last couple of months.
Height - 85.5cm (7th % for age)
Weight/height - 66th%
Evan gets 1300 calories per day, the bulk of which still come from the formula through his feeding tube. But his goal was to maintain a weight gain for between 5 and 10grams per day, so we're all very happy about this, especially since we've been cutting back on the amount of formula he's been getting by 175mls to stimulate his hunger drive and willingness to eat by mouth.  Seems to be working.

I'm very excited about this last weight to height ratio because when we started the program he was barely on the charts at all.  It's probable that he'll never be the same weight or height as his brother, but then they are different people and started life in very different ways medically speaking.  I'm glad that they get to be so obviously different since so many people, especially people who don't really know them well always seem to lump them together as one entity.

Evan still only eats volume from a spoon or straw.  He will touch, kiss and lick pretty much any food you give him but if you ask him to touch the food to his teeth or to bite he will not try, and it is clear that he knows what you are asking him to do.  We know he can do it, we know he has done it several times in the past, but convincing him to replicate those bites is darn near impossible.

Cameron
Cameron's 3month post-clinic follow up stats:

Evaluation Findings:
a. Consecutive sip/swallow with straw observed
b. Continues to accept small amounts of puree
c. Accepts higher textures by mouth (goldfish, crackers, etc) but actual processing and swallowing is minimal
d. parents continue to use feeding protocol at home successfully
e. difficulty with mealtime structure and routine (mostly due to recent illnesses but also because of behaviors)


Nutrition Per CDC Growthchart:
Weight - 12.8kg (61st % for age)
Height - 90.5cm (76th% for age)
Weight/height - 46th %

 Again, like Evan, Cameron is getting 1300 calories per day the majority of which is by the formula in his feeding pump.  His weight at clinic discharge was 12.25kg which is an average weight gain of 6 grams per day over 92 days meeting the goal of 5 to 10grams per day.  And since we've also been cutting Cam's formula back 175mls to stimulate hunger I guess it's working for him too.

Cameron is much more comfortable with biting and is starting to use his back molars for chewing, but we can thank teething his two year molars for that.  He takes teeny tiny tweezer pinch sized bites of foods, and will only eat goldfish crackers if you break the fish up in to small pieces nothing bigger than the size of my pinky finger nail.  And his very interested in our food, to the detriment of regular eating of his purees so that we can not present him with crunchy foods or eat our food in front of him or he will refuse to eat his purees. He will then only take minuscule bites and then chew on them forever and avoid eating the volume of food that he can consume via the purees.  So it's not as simple as just offering him whatever is on our plate.  He just doesn't eat enough to be measurable let alone sustain life.

As I've mentioned before our regular GI Dr. Safta, the doctor who put in the initial GJ tubes and later the G tubes, wants to have the feeding tubes removed in six months.  She feels that if the boys are eating enough by mouth to maintain their weight and show some growth that it's okay to remove the tubes.  Dr. Katz from the feeding program does not feel that's enough and I agree.  His rules are that the child must be completely mouth fed including all medicines for a minimum of six months, that they show they can gain an average of at least 4 to 11 grams of weight per day for six months, that they must be able to go six months without any illnesses greater than a general head cold and not need the feeding tube to supplement their nutrition or fluids in any way during any illness, and that the tubes will never ever come out in the winter months because the risk of illness is much higher and if the child gets sick enough to need help from a feeding tube we'd be back at square one with the whole process including another surgery to put the tube back in.  Based on Dr. Katz rules for removing the boys feeding tubes (which is no where near being able to call them "cured" of their eating disorder) there is no chance in hell that we'll be removing them in six months.  I'm okay with that, just anxious beyond words for it to happen.

Thursday, September 16, 2010

Kipper Dog Dancing


Cameron loves a British cartoon called Kipper which he likes to call "Kipper Dog".  It's about a brown and white dog and his friends and is really sweet and what I would call a calm cartoon since it's all soft spoken voiceovers with no shouting and screaming (like Dora or Diego) and the art is very simple.  The theme music for the cartoon is a pleasant little jazz song.  Cameron was apparently in the mood for some Kipper Dog music to dance to and found some to play on his toy piano.  Problem was that he couldn't find the long version of the song, only the short version.  Evan is running around and around on the slide having a great old time but not really caring about the music too much.  I caught it all on video.

Wednesday, September 15, 2010

Pwweeeeese!

Words to bring tears to my eyes.  For dinner tonight Drew was eating leftover sloppy joes.  We had given a small piece of hamburger bun with sloppy joe sauce on it last night to Cameron and he'd nibbled it a few times.  Tonight when he took one look at Drew's plate he screamed, "Cheeseburger Daddy! Pweeeeese! Pweeese Daddy more cheeseburger? Cah-men more cheeseburger pweese."

You bet we gave him a piece of sloppy joe burger.

Monday, September 13, 2010

Baltimore Zoo

The boys are so observant and expressive now and are very aware of a lot going on around them.  And they are getting so good at telling me what they want.  Evan is now telling me "One too!" when he wants something, regardless of whether or not anyone also has that same thing.  He just knows that he wants one of whatever it is, a toy, glass of water, a cookie, a ride on a scooter, too. 

Cameron is fascinated by skiing now, much to his father's joy.  He demonstrated his interest in the sport by grabbing the purple fly swatter off the hood by our trash can, placing it on the floor, and stepping on it sliding his foot forward saying "Cahmen skiing! Swoosh!" 

In another moment of expressive demands, the boys have been using a new step stool to get to the bathroom sink for washing their hands.  We typically keep that door closed because we just don't need to have them swimming in the toilet and are loathe to put a toilet seat lock on just yet.  Cameron was trying to get in the bathroom and told his Granny "You wash hands? Wash hands Granny."  When she said no, it's not time to wash our hands he replied, "I sad."  It was only a matter of 24hrs and a single episode of Play With Me Sesame where Big Bird talks about opening a door that he'd figured out how to turn door knobs and open any of the doors in the house.  Luckily the front door is a little heavy for him at the moment, but it looks like we're going to be forced to step up our baby proofing.

On the feeding front we're making very small strides in volume so the boys are getting back on track to eating two ounces of any stage 2 puree and consuming up to 4 and 5oz of milk, but very inconsistently.  Occasionally Cameron will finish his 4oz of milk or 3oz of "monkey juice" (Danimals yogurt smoothie drink with a monkey on the side) and tell me "Milk all gone." and on one occasion he asked for more milk.  I happily obliged but he didn't follow through with drinking the rest of the extra ounce I offered.

This weekend we made a trip to the Baltimore Zoo and as usual we had a fabulous time, despite poor Drew's allergies making him feel horrible.  The boys walked the majority of the way around the zoo, but the stroller was still a necessity.  They tire easily and if we want to get someplace pretty quickly the stroller is the way to go, especially since we have to carry around their feeding pumps and feeding toys and a double loaded diaper bag.  The Baltimore Zoo is really nice, especially since the Whistle Stop eating area has been remodeled and there's lots of shaded areas to sit to eat.  There are no high chairs or booster seats or air conditioned indoor area to eat, which poses a major challenge for us because our boys are so particular about eating.  They can't be relied upon to sit still so we can feed them. They would run in a heartbeat so we have to have a booster seat to strap them down to or a high chair like the kind you see in a restaurant.  And it's much nicer to feed them in a chair that's not their stroller because it's a real pain in the butt to keep the stroller clean and their posture is not the best for eating.  Air conditioning wasn't necessary on a gorgeous day like today when the weather was a perfect breezy 77 degrees.  But on hotter more typically humid Baltimore-style days in the summer months air conditioning means the difference between getting the boys to eat food and completely refusing necessary calories and fluids because they are already uncomfortable.

But the Baltimore Zoo is close to all our friends, is on the way to Mt. Washington Peds Hospital so I can take the boys there before or after appointments if there's time, and the parking is free.  There's also a great playground jungle gym climber there which now that the boys are better at climbing up and hanging by their hands they can really enjoy.  I also like that even on a slow day the volunteer staff were everywhere with animals in their hands or on their arms to show to the kids and they were very approachable and all of them were very understanding of a two year old's capacity for understanding and attention span.

Luckily today was a good eating day and the boys did well and it was really pleasant.  There was hardly anyone at the zoo today and that was great for us.  We didn't get to see too much because the animals all seemed pretty snoozy in their houses and the boys got pretty exhausted early due to walking more than usual.  We only saw the polar bears, arctic fox and snowy owl, a couple of ravens, two hawks, a gecko, a turtle and a kookaburra bird that sang his special song just for us.

The boys are getting excellent at holding our hands and not letting go.  But they are completely unreliable about staying put or trying to wander off or drag us in two different directions at the same time.  And they don't really know how to walk a straight line, each always pulling and leaning to one side which either trips me up or makes one of the two fall down.  But we're getting to the point where probably going to be walking most everywhere with them holding our hands in the next six months.   Well, that or whenever they finally get that they are supposed to follow me no matter what and not wander off without looking where they are going.

Here's some pics from this weekend.


Old Navy has some of the best jammies this season.  My little astronauts!


Cameron's got some big shoes to fill.
My little Pirates!  The already know how to the pirate walk and talk. Aaarrrggg!

Here's some of the animals we saw at the zoo.

We visited the Kids Petting Zone to see the goats.  Evan was mesmerized with how the goats were eating from the hanging bale of hay.  He was so intrigued that he decided that he should see what was so tasty about hay and leaned in to sample a bite himself.  At the last minute he changed his mind, but it was fun watching him think about what the goats were doing and see the little gears in his head turning trying to decide if this was something he should give a try.

Saturday, September 04, 2010

Things Heard In My House

Granny Cathy:  Laurie, what are we going to get your brother for his birthday this year?!

Me:  I don't know Mom, I can never think of anything.  Have you asked Donna for ideas yet?

Granny Cathy:  No, I need to call her.

Drew (aka. Smartass Husband):  How about a gift certificate to the Bunny Ranch?  That's always good.

Cameron:  Good idea!

Me:  ::sigh, stare evil eyes and shake my head in exasperation at my husband::

(I have borrowed this post topic from my friend Nicole.  Thanks, Nicole.  Good idea!)

Friday, September 03, 2010

Interractive and Imaginitive

The boys are really starting to become little people with more expressions and language.  Thanks to our vacation in the Outer Banks Evan is now much more vocal and attempting more words, though they are still mispronounced and most of the time are missing the first and or last letter's pronunciation.  But the key is that now he's trying to make himself heard and will pay attention to my mouth and imitate when I pronounce words, where before he was much more timid and soft spoken and gentle with his language and did not repeat or imitate at all.  Both boys love to sings songs and are now singing along with us or the television which is so much fun.  And this has led to a much more interactive and imaginative form of play between the boys.

They have not yet demonstrated any twin-speak, that secret language that infant multiples sometimes have that no one else can figure out.  Instead they are playing chase or "I'm going to get you", playing peek-a-boo with each other, playing with blocks together, crashing cars together, climbing on the windowsill together, taking turns going down the slide head first. 

The boys are playing more imaginatively with their toys too.  At times throughout the day they will just wander off with a toy and sit quietly and play with that toy and I watch and listen.  Evan's favorite thing to do right now is to build towers (only for Cameron to charge across the room and knock it down, which makes Evan laugh).  It's taken a long time with lots of my building the towers and his crashing them to find that there's fun in building them as well as knocking them down.  Cameron has not shown interest in building just yet but enjoys the crashing towers quite a lot. Cameron's favorite thing to do now is to play with his Little People action figures in their firetruck, dump truck, or pink airplane.  He walks the people on and off the vehicle, flies them around, sprays water, has conversations about what is happening to the people.

Today I noticed a new social and developmental skill emerging which is fun, especially since both boys are struggling with a head cold that is making them clingy and more tired and they have been  puking more in their sleep.  Whenever they are sick I see less language and less developmental skills improvements, which is true for anyone who is sick and feels like crap but the delay is more pronounced for kids who have a chronic illness.  If you were vomiting in your sleep through out the night for two years straight you'd feel pretty crappy and not perform at your best all the time too. 

Today I noticed that the boys were very interested in lining things up to make a choo choo train.  Cars, Geotrax train parts without the track, and little Matchbox/Hotwheels cars.  We recently scored a ton of new toys from my older niece and nephew which included about 20 cars.  I found that Cameron was "parking" the cars on the keys to their toy piano using the shorter "black/purple" piano keys as the lines in the parking lot.  Evan was lining the cars up as though he was parking them on his parking garage and then racing and crashing them in a traffic jam on the ramp.  This kind of play is a great sign of more fun things to come because they have been delayed in these areas for a little while and we have known it would come around but it is so much fun to see their own little selves finally coming out.