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.

Day 3: It's Starting to be Work

The first words out of Naomi's mouth today were "Unh-uh.....NO!" with the blankets quickly pulled up over her head.  The morning weigh in and getting dressed were a chore and there was drama about me not bringing black hair bands to match the black shirt she chose to wear today but she had pulled it all together by the time we headed down to the rehab gym for breakfast.  Breakfast went okay but her Boost drink wasn't as cold as she would have liked but she still cooperated.  Her therapist swung her on a swing that spins afterwards and she loved it.  I felt dizzy watching her but she loved it.  Morning snack in the room was a bit challenging but she still did pretty good.  We then headed to the playroom where Naomi made three necklaces and one of the Child Life volunteers taught me to crochet.  I've started a hat. hopefully it turns out, currently it is about a 2 inch circle.  Lunch was a bit of a challenge especially to get enough to drink but she hung in there and got to swing again afterwards.  After lunch she got some private time to talk with the psychologist on the team.  Typically she mostly talks with the parents but with the older children she likes to talk to them as well.  With afternoon snack Naomi was definitely starting to tire.  All this eating was interesting and meeting all the new people and playing in the gym were fun but she spent a lot more time stalling, pocketing food in her cheek and knocking things over and dropping them than before but no outright defiance with the therapists.  After snack she got to try out a new swing that was an inflatable truck tire inner tube hung on it's side.  Naomi bounced and swung and spun until everyone but her was completely dizzy.  I love that they are helping the sensory seeker in her get so much input.  We had planned to go outside and play ball or hoola hoops with supplies we borrowed from the gym but Naomi decided she wanted to lay down and watch a movie instead because she was "sick."  Dinner started out as a disaster.  Naomi helped me set up her plate but then decided she didn't like what was served and spent the next 20 minutes sulking under the table.  I finally succeeded in getting her out but the little she ate was her smallest meal since admission.  After that both she and I needed a break so she went to the playroom and I went outside for a walk.  By the time I picked her up from the playroom she and I had both recovered from dinner and she'd made three more paintings to cover the walls of her room.  She slipped while sitting in the bath tube and barely bumped her head but that set off another round of tears, thankfully she fell asleep quickly and is getting her small tube feeding while I'm relaxing in the family waiting room for a bit.

Day 3.  Still at 17kg and getting 240ml of tube feeds.

Keeping up with her kindergarten class.

Chilling watching Peter Pan.

Sometimes dinner can be overwhelming.  If the food can't see you , you might not have to eat it.

Day Two: Rock Star

All I can say is Naomi is a rock star!  She did a great job at all her mealtimes, even when it was challenging.  She was not a fan of the vanilla flavor of Carnation Instant Breakfast but still drank 80ml (a little over 2 ounces for us Americans) so she didn't quite meet her fluid goal for breakfast but exceeded the solid goal but she more than met her goals for fluids for morning snack and lunch and barely met them for afternoon snack with a lot of hard work.  She hung out in the play room this morning and played air hockey with another little girl here.  They have a date for tomorrow morning.  She rocked through 4 pages of her school work and made sure I wrote down all the books we read.  We had a big meltdown right before dinner when she wanted to go to the park and I told her we could go to the Courtyard.  She eagerly walked down there with me but burst into tears when there was only grass and picnic tables.  The fountain in front of St. Joseph's Hospital next door helped a bit with the tears but she still sulked her way back up into the room.  Dinner was slow to start but with discovering the positive reinforcement of if she ate a certain amount I would make a movie of her, she reluctantly agreed to eat half a taco (which had an offensive flour tortilla rather than corn).  She is now down wooing all the teenage vollunteers in the play room.  She's the only kid in there and is loving all the attention.  Hopefully we keep this amazing pace up but everyone on the team says that in a few days we will see some resistance, we're simply on the honeymoon.  Hopefully tonight she falls asleep sooner and tomorrow is another good day.  Thanks for checking in on Naomi and I.

The view from our room

Hanging out waiting for therapy to start.

Getting goofy with dinner.

Hanging with all the great volunteers in the playroom.

Some photos from Day One

Having a frapacino while waiting for the shuttle at the hotel.

Loves her personalized room and daily schedule.

Playing Dora Memory with daddy in the playroom.

Working hard on her school work.

Her own personal wagon.

I'm too lazy to make this one right side up but check out those art projects!

Day One

Information overload!  That is about the only way to describe today.  If I can remember just one person's name tomorrow I will consider it amazing.  James, Naomi and I flew down to Orange County last night and then headed to the Ronald McDonald House where we hung out for about 20 minutes while they found us a hotel since they were full.  We had a lazy morning at the hotel and then checked into CHOC at noon.  Since then it has been a flood of people.  We met the day nurse and her assistant and then the hospitalist and intern who have to be part of Naomi's team because we are on the medical floor but for the most part will be leaving us alone.  Then we met with the social worker and her intern for a bit.  Naomi's room has a big sign on the wall declaring it is hers and is decorated in princesses and flowers.  Also on the bed was a blanket from the Joyful foundation.  The best part it is a private isolation room so we get to be alone and with two doors between us and the hall it is very quiet for a hospital. At 2 the playroom opened so we headed down the hall to check it out and had a great time with play dough.  The dietitian and nurse practitioner from the feeding team came and found us there so I chatted with them while James and Naomi played.  After a few games it was time to head back to our room to meet with two of the therapists and have her first feeding session.  Naomi ate way more than usual and drank 8 ounces of Chocolate Boost (that's 250 calories)!  We said goodbye to daddy who had to fly back home, then headed down to the basement where all the rehab stuff is for a tour and to see where Naomi's future sessions will be taking place.  We toured the rehab gym and Naomi was very thrilled with the ball pit, especially the mini zip line that can propel you into it.  Sometime during the afternoon we met with the psychologist too.  After the gym we had a little down time before dinner and we started Naomi's school work and then finished unpacking.  Then she and I did dinner in our room and headed back to the playroom for a little more fun before bedtime.  She made two art projects and took out all the duplos and megablocks before it was time to take a bath, read a book and get in bed.  It took her over two hours to fall asleep but now at 10:30 she is sleeping and we were able to give her her meds and hook up a very small tube feeding of only 240ml.  

Naomi would love happy mail and it can be sent to Naomi French c/o CHOC, 455 S. Main Street, Orange, CA 92868.  Email me for the room number.

Day 1 complete.  Only getting meds and 240ml through the tube!  Weight 17kg