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

Getting Ready

I started making a list of everything that Naomi and I have to bring and can we just say OVERWHELMED!  I cannot believe the amount of stuff we need nor can I believe the generosity of my friends who are loaning so much to us.  I have never left home for a month before other than when we were moving cross country and those times I had a Suburban and a trailer and no medical supplies other than a basic first aid kit.  Knowing I won't be able to just run out and get whatever I need makes packing so much more challenging and trying to keep it all manageable for airplane travel, the hospital and then the Ronald McDonald house makes my head spin.  We've been getting calls almost daily about the program, yesterday was the nurse practitioner, today the psychiatrist, who will call back two more times and we still need to speak to the social worker and the teacher at the hospital.  We're working things out with Naomi's school, trying to plan a birthday party for her and making sure all my other responsibilities will be taken care of while I am gone.  I am beginning to believe if you looked up insanity in the dictionary it is illustrated with my picture or maybe just my to do list.  I've almost got the care calendar for meals, child care and rides for the kids done and I know I'm missing something somewhere but I just have to let go and let James take care of whatever it is.  I would welcome prayers for Naomi and I and also for my father in law.  He fell off a ladder a week ago and is still very sore and unable to do just about anything.  My mother in law had planned on coming and caring for the kids most of the time I am gone but I am worried about her leaving my father in law if he is still in pain and having a hard time getting around.

16 days until we fly out.....17 days until we start the program

.

We are finally on that path we began to doubt we'd ever get to.  We are getting ready for the very real possibility of saying good-bye to Naomi's tubie.  Naomi has been tube dependent for greater than 50% of her nutrition for two and a half years and in less than three weeks we will start an inpatient feeding program at CHOC (Children's Hospital Orange County) that has the real likelihood of Naomi leaving with no g-tube feeds at all!  I am a huge bottle of nerves and emotions as we plan for this big metamorphosis in our lives.  I do a happy dance when I think about not having closets full of syringes, extensions, pump sets, surgical lube, button kits, and more.  I would love to have my laundry room for laundry instead of formula storage and it would be pretty cool to live in a house without an IV pole.  Then there are the nerves, can I make it through the program?  It won't all be fun and games.  Naomi is going to have to eat foods she currently refuses and eat at times that are close to impossible to get her to eat now.  I have to stick to the program and not cave when she has one of her first class fits.  And there is the ever present nagging feeling of what if I fail?  Although I've worked through the feelings of I failed at feeding her three years ago and that is why she has the tube, they still surface from time to time, and right now they seem front and center.  What if I fail again?  I know I have to trust Naomi and myself that this time will be different and this time she will eat, she will succeed and this time we will have amazing support to make it happen.

So the countdown begins...18 days until we fly out....19 days until we start the program.