We've been home for two weeks tomorrow.  It seems so much longer than that though.  We are starting to get the hang of what our days and meals will be like for quite some time.  Naomi still doesn't like drinking and she is getting more creative with her stalling and avoidance techniques.  Her newest being a return of the "I'm going to throw up" tactic and the all new "I have a brain freeze" tactic.  The throw up one is the best by far because what parent wants to clean up vomit but seeing as she hasn't yet, I'm not buying it until she is pale and clammy.  Her tactics do make for some interesting looks though.  Nothing like a little girl announcing she is going to vomit and the parent not even acknowledging it, then telling the child to eat to get you a few stares.  We are learning that this is a long slow process.  Although the program at CHOC jump started Naomi's eating, it will be quite some time before she is eating like her peers.  She went to two birthday parties this weekend and at both parties she ate the frosting off her cake, even though both were at mealtimes and served food.  I did learn my lesson after the first one.  I had figured after an hour and a half of jumping that she might eat half a piece of pizza or at least be thirsty.  Nope about an ounce of Coke and she might have licked the pizza before the extremely efficient teens whisked it away to serve cake.  I ended up taking her to In N Out Burger (the one place she has always willingly ate at) afterwards for her meat patty with cheese and a chocolate milkshake.  So the next day when we had another birthday party I was much better prepared.  I had her drink a Pediasure before we went in and brought some preferred foods with us to give her while the other kids ate pizza.  She wasn't big on the Pediasure until I informed her we would sit in the car in front of Chucky Cheese until is was gone.  It is amazing how fast she drank once properly motivated.

School is a challenge with getting food into her.  Last week she had a low for lunch of 1/4 slice of bread and 2 ounces of chocolate milk and a high of 1/4 peanut butter and honey sandwich, 3 ounces of chocolate milk and a few bites of diced pears.  I was very stressed about it until she went into her pediatrician on Friday for a weight check and she hasn't lost so we will keep trying and check her weight again in two weeks.  I'm still concerned but not nearly as stressed as I was.  We are considering sending her with a Pediasure, the pros are it is 250 calories, adequate fluid and balanced.  The cons, it isn't really food and ideally we don't want her dependent on it.  Sometimes you have to take the lesser of two evils though.

I have been making her lots of smoothies and am having fun with it.  I think we've gone through a dozen avocados in the last two weeks.  We might need to invest in an orchard.  I've also been mixing flax seed meal, coconut oil and lots of other good fats into them and so far she is liking them.

She is still taking the appetite stimulant, periactin, and you can see an obvious change on the days she cycles off of it.  I have started looking into other natural ways to stimulate the appetite though most of them involve drinking eight ounces of various herbal teas before meals, I don't see that working well for a girl who doesn't really want to drink in the first place but in the meantime I'll keep reading and bring whatever I find to the attention of her doctors and see what they think.

We are excitedly planning a "Bye Bye Tubie Celebration" in a few weeks.

That is one beautiful belly!

Home Again, Home Again!

Naomi and I returned home last night.  Our last day in Orange County was a great one.  It started with a wonderful surprise at breakfast.  Disneyland Resort had come to make breakfast at the Ronald McDonald House.  Most weekday mornings breakfast isn't provided so we weren't expecting anything so I was pleasantly surprised when someone called our room and asked if we wanted to come down to breakfast as some people from Disneyland had made it and they had "hats and stuff for the kids."  The hats I conjured in my mind were something along the lines of a Burger King crown but with a Mickey face on it and the stuff was a sticker or something.  We came down to the dining room and it was truly magical.  Each seat at the table had a Mouse Ears hat with the ears that glow and light up in different colors, with the ten hats at each table it was like a mini light show at each table in the dining room.  Then there were lovely baskets of pastries on the tables and the beautiful butter pats molded into flowers.  Once we got over taking in all the tables and just being amazed, we were lead by the Disney volunteers to the buffet that was teaming with beautiful and tasty food, there were yogurt parfaits, beautifully cut fruit, eggs, potatoes, bacon, sausage, Mickey Mouse waffles, Mickey Mouse coffee cakes and I am sure there was more but it was so much to take in.  They even had Mickey Mouse plates for the kids.  The volunteers were eager to feed us and for the first time since starting the feeding program Naomi was REALLY eager to eat.  After we sat they brought us drinks.  Naomi got a really cool Disney cup and I got juice in a fancy plastic cup, a square clear one, not the red Solo cups I had grown used to.  One of the other moms and I kept saying it feels almost like Christmas, it was just so special and so totally unexpected.

The rest of the day was spent cleaning our room and then travelling to the airport, flying to San Francisco and then driving home.  My mom picked us up from the air port and we needed to stop for dinner on the way home.  We let Naomi choose the restaurant and she chose Burger King (and got her paper crown).  It wasn't until hours later when I was home in bed I realized that, that was a momentous occasion.  It was the first time we had bought a kid's meal for Naomi and thrown away less than she had eaten.  I actually cried when I realized that.

Today was our first full day back at home and it was right back into the swing of things....kind of.  Sam has the stomach flu, thankfully he got over most of it before I got back.  I am very grateful to Nana and James for dealing with that.  So only three had to be off to school on time.  I took the big two to school and then went to meet with the principal to talk about Naomi returning to school while Nana took Mary to preschool and Naomi out to breakfast before returning home.  I had a great meeting with the principal and by 10:30 Nana was gone and the house, the kids and all of Naomi's feeding was completely my responsibility.  Full of assurance it would be a great day, I planned lunch and then called Naomi to set out to get Mary at preschool.  Naomi didn't want to go, she didn't want to put on shoes, she didn't want to get in the car and she really didn't want to get into her car seat.  I don't believe she was buckled in the most conventional manner as she had two feet on her window but I did manage to get all the straps latched and she certainly wasn't going anywhere.  The whole way to Mary's school she yelled "NOOO" over and over again.  I was desperately trying to figure out where this day had gone terribly wrong when she wailed. "I just want to go to school.  I want to play with my friends."  To this I could relate.  I miss my friends too.  We had a few minutes to hug before we had to walk across the parking lot and pick up Mary, Naomi refused to talk to her old teachers but I didn't push it.  I prayed the whole way home that lunch would go okay.  It wasn't awful, I've definitely seen worse but most of the praise was for sitting in her chair.  Enough food and beverage was consumed and we ended on a good note (and I might have even made some progress on Mary's mealtime silliness) so all in all it was a good meal.  Afternoon snack went great especially since it was all preferred foods, but I can give myself a break sometimes.  Dinner was pretty good as well, however tomorrow we get to deal with the disappointment of not going to school again.  She will return to school on Monday which allows us enough time to get the at home meals figured out and hopefully tomorrow or Friday I can figure out a short play date or two which will help with her missing her friends so much.

It is weird being at home and seeing all the remnants of tube feeding and knowing that is a thing of the past.  There are syringes on the kitchen counter, an extension that was hung to dry above the kitchen sink, button buddies on the dryer, closets full of supplies, an IV pole in her bedroom, and a mountain of formula in the laundry room.  I need to deal with it all, to send it on to new homes but that is a task for another day.  I am tempted to put Naomi on our bathroom scale but I am trying not to be too obsessed with weight and she sees her pediatrician on Friday so we shall see then how she is fairing weight-wise.  I'm a little nervous about that, I look forward to that milestone when I am no longer concerned about what Naomi's weight is and I can no longer give an exact weight in kilograms and pounds.

Coming home makes it all real.  I have a little girl who EATS and eats enough to grow and thrive.  I don't think I can say that enough.  NAOMI EATS!!!!

Day 20: Leaving the Hospital

Today was pretty low key.  When we weighed Naomi this she has gained weight again, I'm guessing water weight today as she was on clear fluids all day yesterday and she did eat jello and Italian ice and drink juice and Gatorade but not enough to gain weight.  Naomi was released to eat at 8:30 a.m. and I let her pick what she wanted so she got bacon, cheese and crackers, lemonade and an Italian ice, not my first breakfast choices but I figured after a day of clear fluids I'd let her choose.  She ate all the bacon and come of everything else.  After that it was back to our regular eating schedule and mom in charge.  She had her last dose of antibiotics at noon and then was released from the hospital a little after 2.  We're staying at the Ronald McDonald House over the weekend so that we can do a couple outpatient feeding sessions on Monday with all the kids.  We didn't get the crash course in whole family eating yet, Naomi had all her meals through lunch at the hospital and then we were going to take everyone to see "Hotel Transylvania" but Naomi didn't want to go so she and I stayed at the RMH and she ended up having snack and most of dinner without the other kids.  Dinner was a challenge as the foods were mostly unfamiliar ones and there was the distraction of chatting with some friends we made at our last stay here back in May.  Naomi ate all her familiar foods that were offered and a bite of one new food and then all of her ice cream sundae that the volunteer cooks made to go with our dinners.

Day 20. 17.5 kg, not tubie and out of the hospital!

Bye Bye CHOC!

Snuggling with her sister at the Ronald McDonald House.

Day 19: Bye Bye Tubie!

Today was a great day!  Today was a really, really great day!  Naomi no longer has a tubie!  The only extras she has right now is an IV for a few more hours, a few sutures on her tummy and nail polish.  She had a pretty good day considering she spent time in the OR.  She got to play in the rehab gym with one of her therapists instead of having breakfast this morning.  She played hard and had a great time.  It wasn't too long after that we were pleasantly surprised that Naomi was going down to surgery earlier than we had thought.  Her wonderful Child Life specialist and her intern accompanied us down there and they showed Naomi what to expect and kept her happily entertained all the way into the OR.  Two hours later we were already heading back up to the floor and quickly went to our last team meeting.  Naomi watched a movie in her room with the intern from Child Life while James and I met with the feeding team.  The meeting was a very happy one.  Pretty much we all wore ear to ear grins while we discussed that Naomi is more than meeting her calorie goals and is meeting her fluid goals and her behaviors are much improved.  We have some goals to take home and work on, mainly keeping up what we've done here and working towards not needing so much reinforcement and rewards.  After the meeting when we went back to the room, Naomi gave us the best surprise of all.  She was hungry!  That is something she has hardly expressed and I realize she had not had anything to eat or drink in 15 hours but she has been on IV fluids only for three days and never expressed hunger before. The rest of the day was spent kicking back and relaxing and enjoying getting to see Sam, Beth, Elijah, Mary and Nana when they got here this evening.  Am I happy with the program?  Delighted.  Did it meet my expectations? It blew them away!  I look forward to many normal years where Naomi is special because of her fabulous performance of "Twinkle, Twinkle, Little Star," for scoring goals in soccer, for telling the funniest joke, or helping a friend in need, not because of how she eats or how many doctors she sees.  Thank you CHOC feeding team, you changed our whole families lives for the better.  I am grinning from ear to ear and crying big, fat tears of joy.

Tomorrow we get a crash course in meal time management with the whole family as Naomi leaves the hospital.  I hope it goes well but I know we have the tools to solve whatever issues arise, who knows maybe the other kids behavior will improve too!  Thank you all for supporting us through this and I hope to continue to update but not necessarily daily as I have been.

Day 19..  17.3kg and no more tubie!

Last picture with a tube!

Enjoying playing a Dora game on the iPad while waiting to go to the OR.

Ready to go!

Hot and tired in the recovery room.

Day 19..  17.3kg and no more tubie!

Day 18: It Takes a Village

I'm in a bit of shock that our three weeks are nearly done.  Today was Naomi's last day of feeding therapy sessions, tomorrow instead of the sessions she'll be having her g-tube removed and surgically closed.  I came here hoping to leave no longer using the g-tube but I never dreamed that we'd leave without it.  There has been a lot of smiling today.  I am so proud of Naomi and the hard work she has done and I'm proud of James and myself too, this program is amazing but it is HARD WORK.  I think James had a tougher day today than me as Naomi hasn't decided that he means business when it comes to meal time and she pulls all sorts of stalling techniques on him and he hasn't had as much time to perfect them but I do have faith that he will.  We still have work to do with Naomi to get her eating to ideal but it all seems so manageable now.

Naomi and I both are very excited not only for her tube to come out tomorrow but to see Sam, Beth, Elijah and Mary.  Neither of us has seen them in three weeks and we miss them.  Last night Naomi was asking if the doctor's was open at night so they could take her tubie out and she could go home.  It's the first time since we've been here she's really expressed homesickness and it made me sad.

As we wind down and finish this program I am overcome with so many emotions.  Even just six months ago we began to falter in our belief if this day could ever come.  One thing I know for sure, we wouldn't be removing Naomi's tube tomorrow without so many people who helped us get here.  There are so many to thank.  First our families who have loved and supported us in so many ways, praying for and with us, watching the kids while Naomi attended her many medical appointments, moving into our home while Naomi was hospitalized, always believing in us, making difficult phone calls for us, paying for medical treatments we couldn't afford and accepting Naomi just the way she is but always believing she could be so much more.  Then there are the many medical professionals, her doctors from the family practice one who delivered her, to her pediatricians, and all the specialists we've consulted with over the years, the ER doctors, the nurses, the Child Life Specialists, the paramedics, the CNAs, the medical assistants, phlebotamists, x-ray techs.  Her therapists who probably spent more time with her than any other medical professional.  First, Paula, the OT at UCSF who helped with Naomi's first swallow study and opened my eyes to how much eating is a sensory experience and was our first feeding therapist, to Monica at CPMC's feeding clinic who told us that poor eating is usually a web of problems not one single thing and sent us down many yet unexplored paths, to Stephanie at CPMC who worked with Naomi for over a year and took a girl from calling a couple of licks of food amazing success to being 50% orally eating and finally here to the amazing team of therapists here at CHOC who have worked with Naomi, James and I so faithfully these last three weeks.  But it doesn't end there, I've been supported by a huge network of other parents who "get it," and have kids that also struggle to eat.  I love my monthly meetings with the moms (and rare dad) at the San Francisco Bay Area feeding tube support group.  Thank you especially to Liz and Judy who even though their children have weaned from the tube they continue to show up month after month and give us all that glimmer of hope that it can happen for us too.  Thank you also to the online support from the Feeding Tube Awareness Foundation, www.blenderizeddiet.net that opened my eyes to feeding Naomi real food through her tube and allowed me to meet Eric Aadhaar O'Gorman, a man who despite his debilitating illness, did so much to make sure everyone with a feeding tube had as much information available to them.  He told me what my toddler couldn't what it felt like to be tube fed and how it felt to be overfed and how different foods really could feel different.  I only with that you could be here Eric to cheer with us in this.  And Jamie Kruiznenga and the Pediatric Feeding Disorders Forum on Facebook.  I am quite sure that is where I learned about the program here at CHOC and that is where my most enthusiastic cheer leading has come from.  Our church family and MOPS group who has prayed, and prayed and prayed for us, even when I doubted God, they never did.  They've loved us beyond human possibility, made meals. given hugs, sent cards, cried with me, lifted me up and read the words of mind that my lips never spoke.  The many schools and all in them that have loved all my children and comforted them through the crazy times that have made up the last five years.  All the friends who have been cheer leaders, baby sitters, dinner cookers, patient listeners, booty kickers (when I got lazy), role models and most of all unconditional in there friendship and support.  Two friends I have never thanked properly for propping me up through the lowest of lows.  Nancy Goble, I could never have survived that year when Naomi was one without you.  I doubt Sam and Beth would have ever been on time to school without you and they might have accidentally been left there afterwards if it hadn't been for your faithful rides.  Your friendly smile and your willingness to give while receiving so little in return is something I treasure.  Tasha King, I am at a loss of words to express exactly how much your friendship has meant to me.  You listened to my tears again and again.  You helped carry me through some of the worst weeks of my life.  You pulled me out of my house when I just wanted to hide, you are as faithful a friend as I have ever had.

Finally I want to thank Samuel, Bethany, Elijah and Mary.  You each have given up so much so your sister could have what she needed.  You gave up time with your parents, you've given up space in your closets, you've given up having friends over for playdates for months at a time, you've been the only child whose parent isn't at a school event, you've given up vacations and the best seat in the car.  Mary you've given up that special time when as the baby you are the center of your families universe.  Those things I can never give back to you but I can say you are the most beautiful, compassionate children I have ever known and I am grateful to be your mom and for your love for your sister.  Each one you, Naomi included, has done great things and you will go on to do many more great things because you are amazing people.

We have so much more than a village, we have multiple villages and thanks to all of them we are here and the view of the future is amazing.

Day 18. 17.3kg and nothing through the tube!

Loving some macaroni and cheese with peas.

Her last day with tubie.

Staying up late watching movies.

Day 17: Speeding it Up!

Today was another great day!  Naomi ate like a rock start and daddy is having a steep learning curve in dealing with her mealtime behaviors, she is still an expert in stalling but she is eating and drinking completely normal portions for kids her age.  She still needs lots of coaching but I am hopeful that she will before too terribly long be eating with direction that is typical to what her peers need.

This afternoon the surgical nurse practitioner came by to chat with us about Naomi's g-tube removal and we've changed plans again.  A really good change, instead of next Friday, Naomi's tube will come out this Friday, in two days, before she leaves the hospital!  This means she'll miss her last day of feeding therapy but everyone agreed she doesn't need it.  At this point the only help, feeding wise, they might be able offer is in helping with meals with the whole family and possibly some tips on getting her to eat again after surgery when she isn't feeling so hot.  I am a little anxious but mostly just excited.

I spent a little bit of time today taking a trip down memory lane.  I was reading some of my old posts on Naomi's Caring Bridge site.  I read one post about an old GI doctor telling us that she would have her tube until she was at least seven or eight and going home and crying since my baby was only two, I couldn't imagine seven or eight, I still can't.  I read a post from two and half years ago about Naomi going to feeding therapy and us working with blueberries and how excited I got because she didn't freak out that they were on the table in front of her and for the first time she willingly let them touch her face, she squished them in her hair, and some of the juice ended up in her mouth and a blueberry did too, she didn't eat a thing and I was elated!  What a long way she has come!  Just 17 months ago I wrote a post about being excited that she drank half an ounce in one sitting, today she drank at least 7 ounces at every meal.

I shed tears again today, that seems to be my theme this week and they were very happy tears.

Naomi and I were looking at old pictures of her on my Facebook today.  She really got a kick out of us sharing the story of how she got here, her story.  At the end I told her about the one doctor telling us she would have her tube until she was even or eight years and she smiled covered her mouth and giggled and said "We really tricked her."  Yes we did, my dear.

Day 17  17.1 kg...nothing through the tube!

Playing her favorite game, Candyland!

Day 16: Some Plans Change

Another day that went pretty darn well.  I shed a few tears last night about our GI doctor leaving Oakland Children's and the thought of starting over and then something dawned on me.  Why is Naomi still being followed by GI?  She has no reflux, she has some constipation but pediatricians all over the world deal with that without GI consult, her weight is good, it is only the g-tube that keeps her with GI.  If we don't have a g-tube we don't need GI and Naomi is proving that she no longer needs one, so I asked the nurse practitioner to come see me today.  She and I talked and she agreed that Naomi doesn't need to keep being followed by GI and she totally understood my desire to not start over again, we talked about taking Naomi's tube out and she agreed that it could be done here.  We discussed the two ways to do it.  One is we simply pull the tube out, just like I would at home when I change it and we then cover it with a pressure dressing and allow it to close on it's own.  The positives it involves no surgery, no anesthesia and is very quick and easy.  The negatives, it leaves a bigger scar similar to a second belly button, it can take awhile to close and it occasionally reopens later and for some it never closes.  The other option is to have a surgeon cut out the stoma and stitch the skin closed.  The positives it leaves a very small scar, it doesn't reopen, it is fully closed right away.  The negatives it involves general anesthesia and all the risks that come with it.  After all this discussion I decided that unless James disagreed that we would go with the surgical route.  It allows us to be done the quickest and with all the granulation tissue that Naomi has at first it wouldn't shock me if we would have to go this route eventually.  The Nurse Practitioner was going to call the surgeons office here to see if there was any way that they could do it next week and I called our pediatrician to see how quickly it might be able to be done at home and we would talk again later.  The Nurse Practitioner called and said the only time the surgeons here could do it was next Friday.  As of right now we intend to stay until early next week and that would mean extending out stay but Naomi and I have nothing going on all of next week as we had cleared out schedules depending on how long the outpatient portion might last.  After a long, very good, conversation with our pediatrician we decided we are going to stay and have it removed!  She basically said, get that thing out!  Naomi is doing great and doesn't need it, and it would be a lengthy process to get in with a surgeon there and let's remove it and move on.  So in the morning I get to tell the nurse practitioner It's a go!  We will go home without a feeding tube!  Oh and I did discuss with my husband too, for those of you wondering and he was part of the decision made!

Daddy got to be in the driver's seat at most of the meals today.  Breakfast was amusing as Naomi pulled some great stalling stunts.  She showed daddy how well she can count.....a lot.  She would have gone on and on had he not finally caught on to her creative stalling techniques.  Not to worry when he figured out that one, she pulled another and another but we still go the meal done and she ate great!  Other than the white milk, that is and will for awhile be a work in progress.  I ditched daddy for morning snack and he and Naomi did it alone in the room.  I didn't give him much choice but knew they needed some time to figure out meals themselves and hey the therapists did that to me the first day, all's fair when your kids have feeding challenges.  At lunch daddy was dealing with car troubles so it was Naomi and I and one of the therapists.  One thing I've been wanting to know is how is this going to work when Naomi transitions back home and to school so I ordered a meal that would closely resemble what I might send to school for lunch with all preferred foods and we went to the busy cafeteria and sat down with my lunch too.  I portioned the food out onto her plate, sat it in front of her and said "Here's your lunch," and then gave no prompting after that to see what she would do.  Well she proved what I already knew.  Naomi can eat great but right now only with one on one prompting.  She was done after eating a handful of Goldfish crackers and some diced peaches and hadn't drank a sip.  She needs much more than that for lunch so I coached her through the rest of lunch and put talking to the school on my list of things to do.  Afternoon snack was daddy and the therapist while I was off talking to the nurse practitioner.  I think they did great and hopefully daddy is feeling more confident with coaching Naomi through meals.

The highlight of Naomi's day was in the afternoon in the playroom when Donald Duck and Caroline Sunshine (Tinka from Shake it Up) came to visit.  Naomi was very excited to share her Shake it Up bunny from Build a Bear that she got for her Birthday with Caroline.  Naomi also got to hang with the CHOC radio folks again this evening and her request this week was "the Itsy Bitsy Spider."  I'll take spider's any day over a fighting 5 year old.  I cannot believe that I haven't had food thrown at me or been hit, other than a missed high five, in four days.

A little aside for all you who have ever had your kid hospitalized, pay attention to the medications your child is given, Naomi gets periactin every night right before dinner.  Tonight when they brought it they scanned her arm band and the med like they always do then handed me the med like I ask them to, so I could give it to her.  I was just about to giver it to her when it struck me that the medicine was light blue.  That wouldn't be alarming except that the periactin has been a yellow color every night that we've been here.  I looked at the syringe the label from the pharmacy had her name on it and said periactin but I told the nurse she wouldn't take it without checking it out.  The nurse called down to the pharmacy and the periactin the pharmacy has is yellow.  They sent up a new dose and are looking into what was sent up instead.  Mistakes happen so vigilance is key.

Day 16  17kg and nothing through the g-tube.

Naomi with Donald Duck.

  

Naomi with Caroline Sunshine.  Naomi loved her and they even shared a game of Candyland.

Mail Call!  Thank you Drohans, Carrascos, Gards and Bradleys!

Day 15: Daddy gets to try

Today was the first day of our third week and daddy got to get in on the therapy.  At breakfast he watched through the observation window while I fed Naomi and then at lunch he got to eat with us but I directed the meal.  For afternoon snack it was just him and Naomi (with a therapist of course) and they did awesome, she ate everything she was served with the exception of one piece of strawberry that fell on the ground when she started getting goofy.  She downed her Miralax with no problem.  I watched from the observation room without her knowledge, I think. She's a smart little cookie.  She asked me this morning where was the "bug in the ear," the ear piece so the therapist can talk to me.  When I said I didn't have one and there was no therapist in the room she asked is there a bug in the air?  I had to laugh at that because there was a baby monitor that was projecting our voices into the observation room but there was no way for us to hear what they were saying in there.  Naomi did awesome in all her meals the only issue she had was a little argument with daddy during bedtime snack.  I don't know exactly what it was because I was outside of the room when it happened and I stayed out until I was sure it was over as I didn't want to step on his toes and make her think that mommy might save her from something daddy asked her to do.

The only bad news today came when we called to schedule an appointment with Naomi's GI doctor and were told she is leaving and we couldn't schedule with her.  I was so disappointed, I don't want to start over again, I get so tired of starting over.  We finally found a GI doctor that listens to us and really cares and now we have to hunt again.  We've started over with her primary care, with GI twice, with feeding therapists several times, with dentists, the list goes on.  Starting over is exhausting as going through her history is hard.  I should be at an all time high, Naomi isn't using her feeding tube at all and is meeting all her calorie and most of her fluid needs, but instead I am just tired.  I left a message for her old GI and am hoping we can get in one last time before she moves on, or that perhaps she is moving someplace close and we can continue with her there.  I am tired tonight but tomorrow is a new day and hopefully I can live in the moment and embrace Naomi's amazing success rather than mourn the loss of another doctor.

Day 14 - 17.1kg and nothing through the g-tube.

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.