Day 14: Last day of using the tube!

Today we got another day pass to leave for a few hours.  We were going to go to a local Children's Museum called Pretend City but right as we were getting ready to leave, Naomi picked up a wooden stool she's been using at the sink and dropped it on her big toe and it really HURT.  She cried for a good 15-20 minutes and has a black and blue toe and might lose her toe nail.  We had to stick around for a bit and take care of her toe and since it happened at the hospital a report needed to be filled out and the resident had to come look at it.  He basically said it looks bruised and she might lose the toe nail but other than ice and Tylenol there isn't much they can do.  As soon as we got the Tylenol we were on our way and boy was I happy that daddy brought the stroller and Naomi's flip flops with him when he drove down yesterday.  We headed to the Outlet Mall and had lunch at Johnny Rockets.  Naomi didn't eat as much as usual but it was pretty distracting and she was worn out from crying so hard after smashing her toe.  Besides she had a milk shake to drink so likely that made up for any lost calories with her meal.  After lunch she wanted to do Bungee Jumping.  Normally I would say no and I was a bit worried about her toe but this little girl has worked so hard that I relented and she had a blast jumping.  Actually it was mostly the guy running it sling shotting her as she didn't weigh enough to really get it going.  We then walked around for a little bit and headed down to the movie theater and watched Finding Nemo in 3D and had an afternoon snack of movie theater treats.  Naomi ate a little, not great but she did drink most of an Icee and she almost fell asleep during the movie.  We then headed back to the hospital to get back into the swing of things and ready for next week.

She ate a fabulous dinner but surprised me by only taking one lick of her ice cream cup.  Her water intake is a little down today from what it has been only 5 ounces of water between meals but I'm not going to let that get me down and considering how good she smashed her toe I think it was truly fabulous, that could have seriously sent things downhill and it didn't.

Tonight was her her last time doing anything through the tube, we did 4 ounces of water with Miralax and instead of doing it while she was sleeping like we have since she's been here I decided to let her do right before bed so she could see it and know she has graduated to the next step.  I didn't talk to the feeding team about this but I am the mom and sometimes it is easier to ask for forgiveness than permission.  I probably would have talked to them though had the idea occurred to me on Friday as opposed to last night.  Naomi hooked up her extension like the pro that she is, popped in the syringe and then poured the water through.  The only help she got was the nurse holding everything steady since we didn't want to accidentally spill and not know how much of the medication was lost.  She then got up and through the extension in the trash (it was more like an enthusiastic slam dunk) and we all cheered and she got high fives all around.  We'll have to have a MUCH BIGGER celebration soon.  Perhaps when the tube comes out.

Day 14 17.0 kg  4 ounces of water with Miralax through the tube.

Fun with food at Johnny Rockets

The milkshake was a hit.

I was surprised she wanted to do this with her sore toe but her feet hardly hit the trampoline.

Ready for Finding Nemo,

 

Her last tubefeeding!!!!!!!

Day 13: A Day at the Park

Today was another great day!  Thanks to our old friends the Hoffmann's (for the car) and our new friend Arlene and the Santa Ana Church of the Nazarene (for the car seat), Naomi and I were able to spend some time at Irvine Regional Park.  Naomi has done fabulous with her meals, at breakfast we tried white milk again this time with a peppermint stevia flavoring that she has had in hot cocoa at home.  She drank 10ml (or 2 teaspoons) which may seem like a small amount but it was double what she did the last time and she only stalled a tiny bit, no tantruming and no pouting.  She also tried Rice Krispies, she's only every had them in Rice Krispies treats before.  I told her they snap, crackle and pop and she was waiting for them to pop like a bubble and was a bit disappointed.  We then spent the next hour getting ready for our excursion, lathering up with sunscreen and figuring out everything we needed to bring with us.  We then had morning snack in the lobby while we waited for our friend who was loaning us a car.  Then off to Irvine Regional Park.  We had a lot of fun at their Pumpkin Patch, playing in the hay maze, road a train, jumped in a jumpy house (just Naomi, I wasn't interested) and Naomi got her face painted.  We then headed over to the snack bar for lunch.  The one by the train and pumpkin patch was very crowded and right next to a gravel parking lot so we took the five minute walk over to the other snack bar by the lake and boat house.  Naomi saw the pedal boats and wanted to go so we agreed to do so after lunch.  Thankfully this snack bar was much quieter and we found a picnic table in the shade.  Lunch went amazingly well other than some tears over a dropped hot dog but she was able to recover and enjoyed her juice box and half an ice cream sandwich afterwards.  We then headed down to the boat house and rented a pedal boat for half an hour.  Naomi wasn't big enough to pedal so she steered while I pedaled us around the lake.  I wasn't at all disappointed when she decided she was done after 20 minutes.  After that we walked around the lake and then back to the car and drove back to the hospital.  All the nurses loved Naomi's new face.  We went down to the playroom and Naomi stomped me at air hockey but her way of keeping score is a bit unusual, half my goals didn't count.  As we were leaving the playroom a little boy was coming in and was scared by Naomi's face paint.  His mom laughed and said well at least now I know not to hire a clown for his birthday.

She was a little antsy with snack this afternoon but no real drama.  Dad got here a little before dinner and we were both happy to see him.  He joined us for dinner.  The therapists had left instructions for him to not instruct, discipline or intervene in anyway during meal time.  I know that was challenging for him, it would be for me but we have established that I am in charge of meals and until dad can be "trained" we need Naomi to know that.  Dinner went well, a teeny tiny bit of stalling but completely appropriate for her age.  Another whopping 13 ounces of water between meals and 8 ounces at bedtime.  I have total peace now about stopping the g-tube water on Monday.

Day 13 17.1 kg and 4 ounces of water plus one med through the g-tube.

 

Pony riding

Jumpy House

Face Paint   

Pumpkin Patch

Train Ride

More train ride

                                    

Paddle boat

Makes a tired little girl.

Day 12: Our Second Team Meeting

Today was MUCH improved!  I never thought I would call it a good day because my child only hit me twice and we got up at 5:30 a.m when Naomi was awoken by wetting the bed from all that night time water. We gained back what was lost weight wise!  Meals went pretty well today, she ate enough and drank enough at each one.  Behaviors happened but I was able to get her back quickly at breakfast she started to throw a fit and slugged me once but I was able to bring her back with a game of tic tac toe where she got a turn for every sip of her diluted chocolate milk that she took.  We were then able to get back into the meal and she finished her milk and ate reasonable amounts of all her foods.  She was such a rock start that she not only got to dance with Dora, she got to be the unit secretary briefly after we returned to the floor. Morning snack kind of drug along but I think that had more to do with our very early morning than anything else.  Lunch happened in the very busy cafeteria with the therapist watching but keeping out of Naomi's view.   We hit a little glitch right away when Naomi decided she didn't want her garlic bread toasted.  When I still asked her to take a bite she squished her bread all up into to a ball.  Then when I continued to wait for her to try the bread she hit me and then rubbed the bread all up and down my arm so I took all her food away and told her I'd wait for her to be ready and steeled myself for an all out tantrum in a very busy cafeteria but instead of the fit I was expecting she pulled it together and asked for her food back.  Yeah!  After that for the most part lunch went well.  When the people in the table behind us left the therapist was able to stealthily move into the table and sit down right behind Naomi.  At one point Naomi had to go to the bathroom and as she got up the therapist quickly held a book up in front of her face like she was reading it, Naomi stopped and stared for a good 30 seconds before moving onto the bathroom.  I am not sure if she caught onto it being the therapist or not but she never acknowledged it.  She bumped her head on the door in the bathroom and cried pretty hard so I reduced my expectations when we got back and reduced my total volume expectations of the spaghetti (a typically preferred food) and we ended lunch on a great note.  We then headed upstairs while Naomi hung out with a volunteer and I walked to the bank and was reminded of how much I miss Northern California weather.  After I got back Naomi went to the playroom while I headed into our weekly team meeting, it felt a little less IEPesque and went really well.  Basically Naomi is rocking this program.  This week she has met 100% of her calorie goals and all of the that orally.  She also met 100% of her fluid intake goals with 75% of that orally but we have seen great improvements with the fluid the last few days.  She is also getting a great variety of foods, something they don't see too often in this program and I owe that to Stephanie, our awesome feeding therapist in San Francisco who worked with us for over a year and got Naomi from 95% tube dependent to 50%.  I believe she could have gotten Naomi completely oral had we been able to do something more intense or started when she was younger.  Naomi's variety ensures she is getting all her micro nutrients as well as the macro nutrients. Naomi and I hit all the goals for last week with the exception of the fluid intake of 5-6 ounces per meal with little prompting, she sometimes exceeds it and had one meal with only 5ml and almost always needs lots of prompting to drink.  At the meeting they gave me a big cheer leading session about this weekend and that I am doing well, one of the therapists even asked me today when I am going back to school to be a therapist.  Hmmm.... that's food for thought but not until my child is done throwing food at me and hitting me do I want to take on another's, granted I have so much more patience for other's children than I do my own.  We also established the plan for next week.  Starting tonight, Naomi will only get a 4 ounce bolus of water with her Miralax after she falls asleep.  Starting on Monday we will work on taking that orally in one of her therapy sessions and discontinue all use of the g-tube!  We will work on dad as a secondary feeder, so he can do mealtimes too and continue to work on fluids.  We will also work on making all food choices something I can and will do at home so that they are realistic.  We also discussed whether we want to take her tube out here and basically decided not yet.  We'll let her GI at home make that decision and help us decide when we are ready.  Afternoon snack can be described in one work AMAZING!  Naomi and I headed down to the cafeteria and the therapist snuck in later.  It was hard not to giggle as I watched her out of the corner of my eye try to peek around half walls at us without being seen.  Naomi never noticed her and she went to town with her snack.  She drank 9 OUNCES of her smoothie.  I quit prompting her and she kept asking for more.  She also ate some cheddar cheese and broccoli and cucumbers with ranch.  I think that is a better more balanced snack than any of her siblings would eat in one sitting.  After lunch she crashed with a movie and almost fell asleep.  We met a great lady from the local Nazarene church who is helping us by doing our laundry tonight and bringing us a car seat to use tomorrow!  Dinner was a bit hard but considering how tired she was and I didn't get  hit but I did get my toe intentionally squished by her toes, I wore no food and for the most part she just stalled.  I am calling it a success.

Here is the best part of today.  Between meals Naomi drank 13 ounces of water!  That is totally freaking awesome!  It is worthy of a major celebrations!  So all my happy dancers out there get up and dance!  This is a major breakthrough!  I'd shout right now but I hope that Naomi is asleep.

Day 12 17.1 kg and 4 ounces of water and one med through the g-tube!

Today was a kick back and take a rest kind of day.

Check out all that awesome mail, thank you Bradleys, Mannions , Sloans and Grandma and Grandpa.

You go girl!  Drink that water!

Day 11: The Wall

 One of the things that the team talks about and tells each parent about before they come here is "The Wall."  It is that point when the child throws everything they've got at you, as one last ditch effort to make sure you really mean business.  We were actually beginning to think that Naomi wasn't going to hit it.  Then we had the mess at dinner last night.    Naomi woke in the middle of the night while we were tubing her water and she was a little miffed that we had told a lie of omission and let her think she wasn't being tubefed.  We talked a little while and she finally went back to sleep but wanted me to know she wasn't pleased.  We woke up this morning and Naomi had a bit of a weight loss, it was minimal, .2kg and still above her admition weight.  It was still hard to accept, I made her get on the scale three times just to make sure it was right.  There is so much emotion tied up in Naomi's weight.  Some of our very best and worst days have all been related to Naomi's weight.  Breakfast today was good, she noticed we diluted her milk but we powered through that, tried some cold cereal with milk and ate half a breakfast sandwich so I thought we were past the wall.

I laughed when I saw this written on Naomi's cup, since she has rarely in her life expressed hunger.
However their is nothing funny about people going hungry because of lack of food or inability to eat.

 Morning snack involved at lot of stalling, laying down in her chair, putting her feet on the table, but she was able to recover from it because she was going to get to run around with the Child Life staff and she was really looking forward to it.  Lunch, well, it wasn't fun, it really, really wasn't fun.  She tried a minuscule amount of tomato soup, which was great but then we has a fit about watermelon.  First she rubbed the watermelon all up and down her arms, then she said it tasted like her fingers and she didn't want to eat it.  I told her she needed to eat it to get to check off her box and therefore play after lunch. She yelled at me, she ignored my requests, she hit me, she squeezed the watermelon into a pulp and very intentionally dropped some on my feet (so wishing I hadn't been wearing flip flops), she told me "I don't want to eat with you anymore," she hit me and drew on me with a crayon, she drew on the table with a crayon and then the therapist came into the room and "rescued" us.  She pulled out a book and she and I looked at the book together and talked about it but Naomi couldn't look at it until she ate her watermelon pulp that she had made.  She was also given a very clear time frame, to finish eating.  She barely made it and had a  short play time in the ball pit.  So the meal was good because it ended on a positive.

She liked the customized smoothie that her awesome dietary tech made for her.

This is how she spent the better part of snack, it is awfully hard to eat like that.

After lunch we headed back upstairs and needed to do some of her school work, I made the mistake of telling her I needed to go to the bank when we finished.  She wailed at the thought of me leaving and very little school work got done and I didn't leave, I couldn't do it to her.  Lunch had been so fraught with emotion that I couldn't leave her crying.  I let her watch a movie and then I got to talk to the dietitian and then the social worker.  I shed a few tears too.  Afternoon snack I was given the choice of going back into the speech room where lunch had transpired or challenging Naomi with a distracting environment but the therapist in view.  Every part of my being said challenging environment, I can't take more of lunch time but we are here to deal with these challenges so we went back to the speech room.  I almost broke down and cried while the therapist gave me a pep talk before abandoning us (I know she was just next door watching  but I felt like a toddler whose mom goes to the bathroom and shuts the dreaded door).  We sat down and Naomi started unloading the food from our bag, she saw we had a hard boiled egg and asked to have it first.  I was a little anxious as although hard boiled eggs aren't new, we don't have an egg slicer here so they aren't just like home and she'd had trouble with them in a previous meal.  She peeled the egg and then after a bit of a tug o war, we sliced it together.  Then she announced we're going to eat three bites of the white part and then three bites of the yellow. HA!  I was only going to ask for one bite of yolk but I certainly wasn't going to tell her.  We both got our pieces of egg and she went to town with the white and had just a tiny bit of stalling with the yolk, we then proceeded to celery, her all time favorite, right up there with chocolate.   After a few pieces of celery I introduced egg salad.  Not happy, no way was she going to dip her precious celery in that stuff, I offered a cracker to dip and she refused and quickly ate the cracker, I got another cracker and she waved it over the egg salad and said she had dipped it.  She then started violently shaking her head and yelling NO at me, she proceeded with this for awhile, I threatened to take the cracker away but never followed through but eventually she did stop barely dipped the cracker in the egg salad, I was so done that I called it a win and gave it up.  We drank some orange juice and water, ate some more celery and one last bite of egg white and then headed out for a trike ride.

Naomi was exhausted after snack and and the bike ride and vegged out in front of a movie while I talked with our afternoon feeding therapist about the session and this weekend.  Talking with her was refreshing as she kept reassuring me I was doing a good job and Naomi's behaviors were nothing they hadn't seen before (other than the defiant broccoli eating yesterday), and that for the weekend when we have to go eat in public that is okay to reduce expectations with new challenges, if we're eating in a very distracting environment for the first time, I don't need to expect quite the same volume and certainly shouldn't present a new food BUT we need to be able to eat in places besides our home and they want us to have that confidence that we can do it.  Naomi has ate in restaurants before so this is nothing new but there was never ANY expectation other than to sit and the table and eat a few bites or more IF she wanted to.  The bar has been raised and I'm hoping we'll both meet it in a good way.

Dinner went surprisingly well but it was all foods she's seen before and only one she doesn't really prefer.  After dinner Naomi went to the playroom and hung out with the CHOC radio folks as they were broadcasting from the playroom on our floor.  Naomi sang Twinkle Twinkle Little Star on air and did an interview and had a great time with the DJ.  At the end of the night she got to request the last song and she chose "So What" by Pink but sung by the Chippettes.  Her favorite lyrics from that song are "I want to get in trouble, I want to start a fight."  Hoping she lets go of all those feelings in her dreams tonight.  Bedtime was tough but once she finally got in bed she was asleep faster than she has been any night since we've been here, I guess climbing that wall in exhausting.

Day 11.....16.9 kg... 12 ounce of water and one medication through the g-tube.

We got our first mail today!  Thanks Bella and Sydney!

Naomi with the awesome volunteer DJ.

Loving being on the air.

Adding to her many crafts!

Someone is not settling down for bed.

Day 10:A Day for Extremes

Breakfast rocked!  Morning snack rocked!  Lunch was trying. Afternoon snack rocked!  Dinner almost sent ME under the table.  All in all though it was still a good day.  I am quite certain that Naomi met her calorie goals but we're still working on the fluid goals.  I have basically been put in charge with some rules and guidelines from the team.  They still establish when eating happens and where it happens and give me general direction about what, but I decide everything else and that's a lot of decision making.  Trying to balance the need for calories with the need for fluid and the need to expand to new foods in challenging.  Knowing that a new food is more likely to be accepted while hungry implies is should be offered early in the meal but new or non preferred foods are most likely to elicit negative behavior that can send the entire meal downhill fast.  Trying to balance a few more bites with a few more sips and when using regular cups determining if she is actually drinking or just pretending to drink.  Then working within what the food services can do is also challenging but thankfully today we made some breakthroughs with that.  Their oatmeal is soupy, like I could easily drink it with a straw soupy.  The dietary tech is going to buy us oatmeal packets so we can work on oatmeal but not offend Naomi so much with the soupy stuff.  We also are going to make some customized smoothies with higher fluid content fruit since Naomi is more likely to drink her fruit than eat it but we're going to limit fruit juice to 4 ounces as no one (who gets enough calories) needs more than 4 ounces of the stuff.

Breakfast today was eaten in record time and Naomi got lots of time to swing afterwards.  I was very impressed and I think she was too.  We had a visit from one of her kindergarten pals after breakfast who is down here vacationing.  Naomi loved seeing her friend and has been carting around the Minnie Mouse that she gave her.  Morning Snack went well, with being in such a good mood and even drank 9 ounces of fluid.  Lunch was not fun. White milk has been horrendous.  Naomi and I sat at an impasse over it at lunch for a good 15 minutes and I only got 5ml of it in her (1 teaspoon).  The dipping Oreo cookies that got her to drink 3/4 of an ounce yesterday wasn't happening today, in her own words and stares she basically told me that the Oreo cookies and I could take a hike.  I even drank the milk, and for those who know me well you know how much of a challenge that was for me, still no bueno, Naomi is not a fan of white milk.  We are going to start cutting her chocolate milk tomorrow so it will be 3 parts chocolate milk and 1 part white milk.  I'm not 100% sure if the team decided not to tell her we're doing it, but with the chocolate milk three times a day that is over 80grams of sugar and that doesn't include any of her other sweet foods.  We're also going to see if we can find a Stevia flavoring that we've used at home with the other kids.  On a bright note at lunch Naomi mixed foods very well and had a rice and bean burrito that she made and she allowed a piece of chicken and a small sliver of avocado to go in it too.  Afternoon snack was awesome, she ate a ton of celery.  I think it is likely her all time favorite food.  There are people, myself included, who would love to love celery for it's low calorie properties and here my child who struggles to eat can't get enough of it.  Thankfully she will dip it and we had it with ranch dressing, cream cheese and we even tasted hummus too.  We also had some pretzels, but really the celery was king. She also drank an 8 ounce bottle of water, quite impressive.  Dinner, I'm glad that's over.  She had spaghetti (a food she normally loves), green beans (a food she tolerates), cooked broccoli (she refused but will eat it raw), chocolate milk and a rice krispie treat.  She started off good and took several bites of spaghetti and few sips of milk and then told me very loudly how she felt about the broccoli, She was stalling so I made some boxes to check off and put a number next to each one and told her she could pick the food but I picked the number of bites, this worked for about three boxes but then when asked to pick she kept saying "I don't know" but without the words really.  I told her you choose or I'll choose, she didn't choose so I choose spaghetti and it was four bites.  She was not happy, she screamed "NOOOOOOOOOOOOOO!" "NOOOOOOOOOOOOOOO! The choices are all MINE!!!"  over and over, then she cried.  The screaming was easy to ignore, the crying harder as this is the first time she has cried in relation to eating while here.  Then she hit me (which helped me get over feeling bad about the crying) but was very challenging to ignore.  She flung some food at me, and I sat there and ignored it.  Then she defiantly told me "I'm going to eat ALL my broccoli" and she did.  It was all I could do not to bust up laughing, she'd defying my request to eat a preferred food by eating a non-preferred food.  After eating her broccoli, screaming and yelling some more, she sweetly said, "I'm ready to eat my spaghetti now" and that's what she did.  Thankfully dinner ended on a positive note as that meant Naomi got to go to the playroom and I get a little break.  It is so hard to let go of the negative meal time behavior (or negative anytime behavior) and move on to the next activity with a clean slate.

Last night I was reading a blog of another mom and daughter (about the same age) who went through the program here and one of her posts talked about how she deserved a medal and I whole heartedly agree.  Her blog was quite refreshing and I really laughed as she wrote about the things her daughter did to avoid eating and I have to share a great video that she shared that basically shows what we're doing here with positive reinforcement.

So excited to have her finger and toe nails painted.

Lots of body art, sparkly toes and fingers and black lines down her leg that  she swears she didn't do, too bad she doesn't have a little sister to blame it on here.

Day 9:Breaking All the Rules (in a Very Good Way)

One thing Naomi's doctors have always said is that she is an unusual case and she always has to do things differently.  When she is ill she never presents with typical symptoms, she has unusual and unpredictable reactions to general anesthesia and things that should propel her forward set her back and vice versa.  Well today the feeding team met to discuss Naomi and decided to do something they have never done before.

Naomi is consistently getting it 1800 calories a day but she is falling significantly short of her fluid goals.  So she is going to get water, which usually is a no-no here because calories are so necessary. She will get water at one snack and water after drinking 4 ounces of juice at the other snack.  She is also going to be allowed water between meals and snacks just not within 30 minutes of one.  We are also going to increase the overnight water via the g-tube to 12 ounces from the 8 she has gotten the last few nights.  Being fully hydrated is very important as dehydration is just bad in general but it also kills appetite and makes one cranky and feel lousy in general.  Hopefully the water will get her fluids up to where she needs and we can nix the g-tube water all together but I am so proud of the progress she has already made I will focus on that progress while working hard on the fluids.  Just today we've already seen progress with the dehydration in that  her urine is less concentrated.

Our checklist from dinner, showing her checked off boxes and the reward of
getting to play with the Barbie house in the play room.

The other big breakthrough today was the use of checklists.  Naomi does a lot of stalling during meals, that is the big reason they are usually taking an hour.  She will dawdle over every bite and then pocket the food in her mouth and take several minutes to chew and swallow it, she also likes to take microscopic bites and sips.  With a checklist, we make a row of boxes and she must eat/drink something that I specify to check off each box.  We don't set it all up at the beginning of the meal, just the number of boxes, but we develop it as we go, that way I can go back to a food or lower or raise my initial expectations based upon her progress.  We also draw a picture of what she will get to do after the meal at the bottom of the chart and vary easy and challenging requests, I even let her decide for some of the boxes.  The therapist who suggested this is brilliant.  We used if for the first time today at afternoon snack.  In the first half of the snack we ate one Oreo, a teaspoon of milk and a few sips of water, all of this took 20 minutes, after we instituted the check list she drank half an ounce of milk, 5 ounces of water, 2 more Oreos, 7 animal crackers and 2 teaspoons of sunflower seeds, in the same amount of time and therefore had 20 minutes left to play in the gym.  We did it again at dinner and what usually took 50-60 minutes took 30.  We also used the "bug in the ear" for therapy today.  I was alone with Naomi while the therapist watched and I had an ear piece that they could speak to me through, it allowed for immediate feedback which was awesome but a little disconcerting and it is hard to hold two conversations at once and one you can't really acknowledge.  I love being able to get the both positive and constructive feedback immediately.

Two other greats for today, last night Naomi fell asleep at 9:30, the earliest yet so hopefully tonight will improve too and Naomi got a half hour music therapy session.  It was a great one on one time with the music therapist who played music and sang with Naomi and she absolutely loved it.  Tomorrow her Child Life Specialist set up a scavenger hunt for her to do around the entire hospital, I think I might be more excited for that than her.  Definitely looking forward to tomorrow

Naomi playing on an awesome drum set that makes every noise imaginable and then some.

.

The music therapist used one of his drums to make a stage for all her Littlest Pet  Shop.

Naomi and her awesome music therapist.

Day 8:I'm Tired

Today I realized how tired I am.  This is emotionally exhausting.  Naomi is doing fabulous and I'm thrilled but man is this work!  Yesterday was tough.  It was our second day alone and a few of the meals seriously tanked.  In the whole scheme of things they were good as Naomi didn't "win".  But huge crocodile tears and having to withhold desired rewards was hard as she was terribly disappointed she didn't get them.  However the lesson that mom is boss when it comes to eating and that I won't change my mind is incredibly valuable. Last night was Naomi's toughest night.  She went to bed at 8 but didn't fall asleep until after 11.  Then I still had to tube her water.  Combine the late nights with bringing out episodes of her worst behavior and this is tough for moms, no wonder they make you spend so much time talking to a psychologist beforehand.

Today I woke up tired and so did Naomi.  She did NOT want to get up and get weighed before breakfast.  She almost went down to breakfast in only her underwear but complied with getting dressed at the last minute.  Breakfast went pretty well, volume was a bit low but she tried everything.  Morning snack went well and then lunch was a bit of a challenge, we mixed her chicken and green beans into a stir fry and she wasn't pleased, she sat refusing to try the vegetables for about 20 minutes and only when reminded that she was running out of time to play in the ball pit did she comply, then she did great and had a pretty decent meal.  Afternoon snack was in the cafeteria with some new ways of having foods, we did celery with cream cheese, peanut butter and raisins, she sat down and just went to town and was thrilled with mixing them.  The therapist and I just stared at her and had no clue what to make of it.  Dinner, well, that's another story.  The good news is she eventually did eat, the bad news, she scraped mashed potatoes all over the floor her chair and the window.  She wasn't so thrilled though when she found out she got to clean it up.  Tomorrow I get to go it alone for breakfast with the therapist watching through the one way mirror, that will be interesting and I am hoping Naomi shows some of the intense behaviors she's only been having at meals in our room.

We talked with psych and the OTs some more about Naomi's sleeping troubles.  Psych gave us a book for guided relaxation for kids to read before bed and OT, helped us come up with a better sensory diet to get more input during the day and wind down better at night, which includes some jumping on a mini tramp and heavy blankets for bedtime.

Calling into CHOC radio last night.

I beat mommy again!

Using IV poles to dry our laundry.  I only had two hours to get i done and between a delay with the shuttle to the Ronald McDonald House and the washer not spinning right our clothes weren't dry so the nurse got us some extra IV poles as a clothesline.

Day 7: The Details

Today is a slow day.  One of the therapists came by for breakfast and then we're on our own for the rest of the day.  Naomi's been a bit resistant this morning but hasn't hit the floor yet.  The therapist said it will likely get worse this week.  I can't say I'm looking forward to that, I don't know how much table flipping I can handle,  but she said that usually the behaviors are extinguished by Friday, I am very much so looking forward to that.  And at least she's flipping tables where someone else does the mopping. I need to make a very nice card for the housekeepers before we leave here.  Last night Naomi had her last tube feeding with formula!  From now on no calories will go through her tube, only water and one medication.

A silly picture to most, but at 12:30 a.m. the pump alarmed and Naomi's last feeding with nutrition was complete.

I thought I'd go into some of the details of what we're doing here.  Every morning Naomi gets up at 7:30, we get weighed and then get dressed and a quick set of vital signs.  Then we head downstairs to the therapy gym for breakfast with one of the therapists.  We have an hour session, if the meal is completed in enough time Naomi gets rewarded with playing in the gym, her favorites are the various swings, the mini zip line, ball pit and rock wall.  We also give reinforcements at the table when needed.  Usually at the table we use a turn taking game so she gets turns for taking a certain number of bites or trying a new food or with really offensive foods just smelling or licking them.  The idea is to reduce the outside reinforcements and change them to verbal ones and eventually not need reinforcements.  Negative behavior is for the most part ignored, that is honestly the hardest part.  At the end of each session the therapists talk with me while Naomi plays, either telling me why they did what they did or giving me feedback on what I did, what I did right and what I need to change.  After our breakfast session, we have some free time.  We usually use it to do some of her school work.  At 10 a.m. we have a morning snack in our room, then get to head to the playroom until noon.  At noon we go back downstairs for our lunch time therapy.  Then back up for some more free time and back to the playroom at 2 p.m.  Back down to the gym for Afternoon snack at 3:15 p.m. and then some more free time in the evening.  We have been trying to go outside in the afternoon.  Then we have dinner in our room at 5:30 and back to the playroom at 6:15 for an hour of play before getting ready for bed.  It is a lot of mealtime but it's what it takes to get all the food in.

Some of the tools we use during therapy and other meals are small amounts on her plate and smaller plates and bowls, to make the food seem less overwhelming.  We've been having drinks in a little medicine cup which is small but also has lots of markings so we can show very simple clear expectations.  We have a child size table in our room and different style chairs to offer the support, freedom, restraint and height that Naomi needs.  We have a sign for our door when we are eating in the room so no one will come in and interrupt us.  They cater the tools to each child and for Naomi one of her biggest challenges is inconsistency with willingness to eat food.  She will eat a reasonable volume of something one day and then declare she has never liked it the next.  To help with that we've created a picture journal for Naomi where we draw the foods and she gets to rate them.  We tried numbers first but she didn't quite get the rating scale so we used the smiley face pain scale which made more sense to her.  Now she rates the foods and if she later declares she doesn't like them we show her what she thought before.  Also we talk about how sometimes when we first try a food we don't like it at all, but then the next time it's not too bad and then maybe we feel like its okay and eventually it may even become a preferred food.

Medicine cup with lots of markings to show progress while drinking.

Our table and chairs to eat at.

Naomi's schedule on the wall so she knows what happens next.

Her food journal

She really gets into coloring the ones she doesn't care for black.

Our sign to make sure meals are uninterrupted.

In between all that I meet with the dietary tech to pick foods for the next day and Naomi and I both meet with the psychologist at least three times a week. We check in with the others on the team once our twice a week outside of our team meetings every Friday.

Our team consists of five therapists (some OT, some ST), a dietitian, a gastroenterologist, a GI nurse practitioner, a social worker (and her intern), a child life specialist, a dietary tech, psychologist and the office manager for the feeding program.  It is great to have so many people working with us as they really care about every aspect of Naomi's day and having complete success.  They've helped with making sure she gets enough activity, she gets her school work done, she is happy and she is comfortable and sleeping as well as possible.

Day 7 17.1kg and 240ml of water through the tube!

Naomi's loving her personal Wii.  It's a good thing she won't be driving soon
 as the only things she didn't drive on was the road.

Naomi's self portrait.  

Day 6: My First Day Alone

All week I have been nervous about today.  Monday through Friday, I have a team of therapists, doctors, nutritionists and more that I can talk to during the day.  We have three one hour sessions with the therapists.  Today I am on my own.  I don't even have Dora to dance with Naomi (unless you count that short kid on Nick Jr. who in my opinion doesn't dance very well).  I'm not discounting the nurses but the feeding program isn't their deal.  They take weights, temperatures and listen to her lungs and follow doctors orders for meds and stuff but they don't do meals.  Today I had to do all three meals and two snacks by myself.  Morning started off great.  Breakfast was a breeze.  Naomi ate and drank what I asked of her and morning snack went well too.  We had a little resistance and avoidance but overall I was happy, reminding her we could go to the playroom when she was done helped.  Lunch was the best meal yet, she sat down, went right to it and not only mixed some foods she hadn't before but tried sour cream and liked it.  When she found out daddy doesn't we both agreed he is silly.  So I was totally unprepared for afternoon snack.  It started okay as we put some food on the table and sat down to get started but then she asked if she could have water and I told her we were having chocolate milk.  That wasn't the answer she wanted and she immediately dove under the table and the chair. She laid there for a good 15 minutes shouting "No" every minute or so and decided that wasn't getting a good enough reaction for mom so she rolled over and kicked the table over.  I caught it before everything hit the ground and it was VERY, VERY difficult to remain completely dispassionate and wipe up the food that spilled on the floor and sit back in my chair and wait for Naomi.  I gently reminded her we had planned on painting her toe nails after snack and then waited, and waited, and waited, and waited.  After a total of 45 minutes under the table, Naomi got back up, sat in her chair and ate a pretty decent snack.  Not as much as I had originally hoped but more than I expected after her lie in.  Dinner was mediocre but I think we were both still a little tired and wary after our snack drama.

In other news, Naomi has lovely yellow finger and toe nails (that was the only color the gift shop had) and we made a dozen book marks in the play room today.  Naomi smoked me in Candy Land but I just barely won Wii Bowling.  Naomi rode her trike like a little speed demon in the mostly empty lobby today, it was too hot in our opinions to go outside. The first day of fall here in Orange was a whopping 92 degrees. Our highs at home in the summer rarely hit the 90s.

Day 6   17.0kg and 240ml of formula through the tube (last night of formula!)

Watching Netflix on the iPad.  Thanks Gina!

Day 5: Our First Team Meeting

Today was a good day.  No, today was a great day!  We had our regular therapy appointments and this afternoon we had our first team meeting.  At the therapy appointments for breakfast I co-led and then for lunch and afternoon snack I led the entire session with the therapist in the room but only chiming in when necessary.  Naomi really pushed the envelope at lunch but thankfully she was redirected and tried the food and was rewarded with time playing on the zip line and ball pit.  I got to chat with most of the team members today before the meeting and then at the meeting and I am honestly very excited for week two.

Here is the synopsis from the meeting.  Naomi is exceeding her calorie goals.  She got an average of 2230 calories per day 1989 of those by mouth.  Were doing a major happy dance for that one, right along with Dora the unit secretary who dances with Naomi after every meal.  She also feels her muscles to see if they are growing and both she and Naomi agree that they are.  She's going to be one strong girl when we get home.  Naomi is getting about 75% of her fluid goals but only 50% by mouth. Best part is she gained weight.  Her admission weight (Tuesday morning since Monday was with clothes and in the afternoon) was 16.7kg and today she was 17.1kg.

Last week we had five goals

1. Sitting for 30 minutes at meal times with a minimum of negative behaviors. GOAL MET
2. Accept a minimum of 2 oz of a beverage in each meal with minimum prompting. GOAL MET, EXCEEDED
3. Accept a minimum of 4 oz of preferred solids in 3/5 mealtime opportunities with minimum prompting. GOAL MET
4. Accept a minimum of 1 oz of non-preferred solids in 3/5 mealtime opportunities with minimum prompting. GOAL NOT MET
5. Me observing therapy and taking those lessons to non-therapy meals. GOAL MET

Four out of five is pretty awesome!

This weeks goals are

1. Starting Sunday no more formula through the g-tube, replace that with 8 ounces of water.
2. Accept and tolerate a minimum of 1 oz of a mixed consistency with minimum prompting during therapy meals.
3. Accept 5-6 oz of liquids during all mealtimes with minimum prompting.
4. No more high calorie supplements but keep high calorie foods.
5. Accept and tolerate a new form of a preferred food in 3/5 mealtime opportunities with minimum prompting.
6. I will lead all therapy meals with moderate assistance from therapist.
7. Start moving therapy to distracting environments like the cafeteria or outside in the courtyard.

I am hoping next week we can report meeting 7/7 goals.  Perhaps we should have made a goal of falling asleep at a reasonable time, as I type it is a quarter to 10 and I can her Naomi still shifting around in her bed.  Hopefully sleep will get better as first, being the weekend the hospital is emptier as no planned admits happened in the last day or so and also Rehab loaned us a trike (the halls are no longer safe with this wild child on the loose) and Child life gave us a Wii in our room with the Just Dance game so hopefully she will be more physically tired at bedtime.

I am a little nervous for the weekend as I am left to go it alone for the most part.  One of the therapists will come by for Sundays breakfast but otherwise as far as the feeding team goes it is just me and Naomi.  Hopefully we both make it to Monday with smiles still on our faces.

Naomi is feeling a bit homesick today, she started asking when we go home and wasn't thrilled with the answer, if you'd like to send her an email you can do so here. http://www.chocforms.org/patients&family/patientEmail.cfm

Day 5 17.1 kg and 240ml of formula through the g-tube (but not for much longer).

Major grump this morning.  This is how we went to our breakfast therapy session.

Clear the halls, Naomi's on the loose.

They even let us take the trike out front, but the proximity to traffic  made it much more fun for Naomi than me.

Trying out mixed textures with Dirt Cake.
She at the worms and one bite of the pudding cookie mix.

Naomi insisted she needs two pillows to sleep.  

Day 4: A New Way to Journal Foods

Today started like yesterday with a little miss crabby pants but when I started to pick her clothes out for her she jumped up and got going.  We had our morning weigh in and vitals and then barely made it to our breakfast session on time.  Breakfast wasn't half bad even with me leading the session and the therapist chiming in when needed.  We had a bit of a challenge with banana that she was willing to bite and chew up but kept trying to spit out rather than swallow.  Thankfully the therapist jumped in and held her hand that she'd spit the banana onto and calmly told her she needed to eat it.  She stared the therapist down for a bit but then complied and ate the chewed up banana mush.  After breakfast we talked about how inconsistent Naomi is with foods.  A food she swears up and down is her favorite on one day, she adamantly refuses the next and says it is awful for no rhyme or reason.  So we made Naomi a book where she gets to rate her foods every time she eats them.  We draw pictures of each of the foods and then she uses the faces from the pain scale to rate them.  We also colored each face a different color to help her verbalize how she feels about the foods.  We started this at lunch time.  I don't believe the first page of the book is totally accurate as everything got the highest rating and a shiny silver smiley face (except mashed potatoes with gravy that got black the worst rating).  However as we tried more foods she got more into it and so far today it has motivated her to try things as she loves to draw the mouth and color the face to rate each food.  We've had some unexpected surprises too.  Peaches (a food she normally refuses) got the highest rating and plain avocado got the worst but avocado with salt got mediocre, we can work with that.  After every session, if Naomi finishes in time she gets to pick an activity in the gym.  Every time today she has chosen a swing that makes me crazy dizzy watching it.  Here is a link to the video on my Facebook page.

Outside of her sessions today she had made a pile of art in the playroom.  We might run out of wall space, she met a player from the Angels baseball team. I wasn't there but I included a picture of the signed hat so maybe one of you can tell me who he was and we went outside and played ball and hoola hoop.  Her favorite though was getting to talk to her kindergarten class.  I'm not sure all the information that passed hands as I only got to listen to half of half the conversation as the psychologist on the team stopped by to talk with me but Naomi seemed thrilled to here her teacher and classmates voices.

The best news of today was that dinner went fabulously. I must admit I chose all preferred foods after the disaster last night but she ate well and likely met her calorie goal for today.  Most of it was likely from the Oreo cookie shake I ordered her.

Tomorrow is our first team meeting so it will be interesting to hear what everyone has to say.  I am hoping for more of the same that is happening but I am also hoping for a regression in her behavior, sounds crazy, I know but I would love for them to see the way she acts in regards to food at home, when no one else is watching.  How she refuses to eat, claims to be sick and insists she is full after only a few bites.  I am SOOO glad she is eating but I am a little bit fearful about a huge regression when we leave here.  All this eating is so exciting it is almost overwhelming.

Until tomorrow....

Day 4 17.0kg, and 240ml through the tube.

Sipping Chocolate Boost at snack time.

Bravely trying canned pears.

She like it!

Maybe one of you baseball lovers can identify this signature.

Ready for bed with her new Angels hat and monkey.