Day 6 - Joy is Discharged from the Program!

Joy woke up crying at 5am.  Every parent dreads these "alarm clocks" that don't have snooze buttons.  I tried to take a quick peak to check on her but alas, she heard me and cried even louder.  Wonderful (add sarcasm here).  Thankfully, Selena already prepared the formula mixed with a little miralax and on her first gulp, she drank 1.5oz.  I offered her more but she wasn't interested. We also warmed up some of Selena's homemade sweet potatoes mixed with green beans.  She tasted it but didn't seem interested. Go figure.  I also offered her chicken and sweet potatoes but she didn't want to try.  I guess she wasn't in the mood for solids this morning.  I'm also curious to know whether we should be offering a new type of solid this early in the morning. We played around with mommy for a bit and then she drank some more.  In total, she drank 4oz of formula, which is the most she ever drank for her first meal.  Way to go Joy!

Playing with Mommy

While Joy was starting to dose off, Selena and I got into an argument.  I told her Joy drank 4oz but she didn't believe me even after visually inspecting the sippy cup.  She wanted to accurately measure how much Joy drank.  I have a problem with this because everyone, including the Spectrum feeding therapists, Dr. Weich, some of Selena's friends and I have been telling her to calm down with measuring how much she drinks.  She seems so driven for Joy to drink at least 15oz that it is increasing her anxiety and pressuring me to offer the sippy cup more.  I just hope she realizes that this is not the best way for a baby to re-learn how to drink/eat.  Joy is in the driver's seat and we need to stop pushing our goals on her.

After a 30 min nap, she awoke with smiles and giggles.  We let her explore on her tummy.  She really likes carpeted stairs.  Maybe it's because we don't give her enough exposure to carpet at home.  We have hardwood floors that are covered in foam mats.  But at Gabe/Erica's house, we let her roam the area without the mats.

One day she's going to try to climb stairs...but not today thankfully

And of course, today is also the day when Joy had her first fall on the hardwood floor.  While trying to transition from sitting to tummy, she fell flat on her face and started to cry.  Her wrist landed in an awkward position and I didn't realize it but she must have landed on her mouth because blood was dripping out onto my shirt.  Selena was visibly upset and called Jennifer.  She told us to calm down, inspect the wound, and if it looks bad, take her to urgent care.  She assured us that this would not affect the tube weaning process.  Joy was still crying but she finally did calm down about 20 min.  She took a few sips of water and I had to hold her for the next 30 min.

By then, she started to get fussy so we prepared her food.  She's very attentive when we are warming up her solids and mixing her formula.  Despite her fall, she drank 2oz of formula and 1oz of solids (chicken and sweet potatoes, carrots).  Comparatively, this wasn't a lot of food but times like these, I have to cite the 3 Marcus Wilken Rules on eating to remind myself that it is ok when Joy doesn't eat a lot:

1. A baby who is not hungry will not eat
2. A baby who is hungry will eat
3. A baby who is hungry but chooses not to eat...will eventually eat

After a new set of clothes, we gave Joy a cold teether toy (per Dr. Weich's suggestion) to help soothe her mouth and let her watch a youtube video of her favorite book, The Very Hungry Caterpillar.  As usual, she drifted off to sleep in her swing.

Jennifer came by while Joy was asleep.  As I predicted, she officially discharged Joy from the program!  She emphasized all the wonderful progress that happened this past week.  While she affirmed that Joy is an eater and will continue to do well, she also expressed her concerns about us over institutionalizing Joy with all the doctors and therapists. We agreed and plan to limit Joy's exposure to the medical professionals and let Joy develop and experience life as a normal baby. We will be in contact with her everyday for the next week, then weekly for a month, and then once a month for 3 months.  I really appreciate what Jennifer did for us.  She was tough and honest with us in the beginning (pushed us to get rid of one of Joy's feeding therapists) and supportive all along the way.  She's very knowledgable, an amazing therapist and I'm glad we had the opportunity to work with her.  So if you're reading this Jennifer, THANK YOU!

Jennifer Berry and Joy

Good Times!

After she left, Joy had another great meal.  She ate 3oz of chicken and sweet potatoes and 3oz of formula.  Her tummy looked full and I could hear the food swishing in there. Gotta love that feeling when your baby is full of food. She was happy and playful, and in return, we were happy and playful with her too!

Joy took another nap and I ran out to Target to get some cleaning supplies and baby food. I picked the wrong day to shop because the store had no AC.  I was sweating just from walking from one section to another.  Figuring that it had been a long, but successful week with Joy in the feeding program, I decided to treat myself to some ice cream.  Don't I deserve it??

Chocolate and Cherry Jubilee

I returned home around 4pm and found Selena feeding Joy. By now we determined that she eats every 3 to 3 1/2 hours.  She ate 2.5oz formula and 0.5oz of chicken and sweet potatoes.  We also introduced her to turkey and vegetable.  She only had a few spoons but we think she'll eventually like it.

Dan and Deborah Kim stopped by on their way back from Atlanta.  Solomon and Andrea Shin also came to visit too. We went out to dinner at Suldoga in Annandale, VA.  The food was ok but it was also another opportunity to feed Joy at a restaurant.  She wasn't hungry at the beginning but then after playing in her booster seat for a bit, she started to grunt.  I guess she communicates in barbaric when she's hungry. She ate 1.5oz of chicken and sweet potatoes and 1.5oz formula, DESPITE the distractions and being tired at the restaurant.  She is such a trooper.

In total for today, she drank 12.5oz of formula and 6oz of solids.  Another day, another step forward in her recovery.  Our plan is to take Sunday to clean up the house (sorry Gabe/Erica for the mess!) and to get ready to go home on Monday.  We'll have one more dinner outing on Sunday with Yoon and Jenn and then we'll transition to life back home.  Jennifer advised us to move things around at our house, including the high chair. We don't want Joy to remember any of the old negative associations with food. We also don't want to slip back to how we used to feed Joy with high anxiety and stress.

In the end, we are VERY thankful for everyone's support.  Not just the doctors and therapists, but also our family and friends who provided meals, visited, counseled, prayed, financially supported, etc.  I was sharing with Selena today that God really orchestrated everything perfectly and in His time.  Joy wasn't ready to be weaned when Spectrum had their last scheduled weaning in March.  We needed the months in between for Joy's medical issues to resolve, and for the feeding therapy to lay the groundwork for the Spectrum program.  And right when our insurance coverage ended for the traditional feeding therapy, the Spectrum program had an opening for Joy and we were able to raise the necessary funds to secure the spot. All things happen for a reason and I hope that our experiences can help encourage and support others who are going through similar problems.  

Day 5 - Feeling Blessed, Yet Mindful of Tube Weaning Families

I woke up very early this morning (4am) tossing and turning.  My thoughts raced about how we have been so blessed to see Joy improve so dramatically.  It's not just this program but also the doctors and therapists at Children's First, KKI and Children's Hospital.  Everyone played a HUGE role in helping Joy recover from all of the trauma. Very thankful and very blessed.

Yet a part of me is also quite sad. You see, we're not the only family attempting the tube weaning this week. There are 2 other families, one with a 3 year old with down's syndrome and another with a 5 year old with autism. Both have G-tubes (tube that connects from the outside directly into the stomach).  Because they've been fed through a tube for a lot longer than Joy, their tube weaning is MUCH harder and understandably so.  Like us, they struggled with their children consistently vomiting, oral aversions and refusing to eat.  Like us, they struggled with people on the street who stare because their child has special needs.  Like us, they cried and pulled their hair out on many occasions.  And like us, they came to a conclusion that they needed to help their child learn how to eat and held fundraisers (one used GoFundme) so that they could participate in the Spectrum program. I think of them often and pray for them.  Each day we ask Jennifer, Heidi and Markus about their progress. As of yesterday (day 5), both were struggling with their hunger but have started to taste and explore food.  Please keep them in your prayers.

Joy finally woke up at 6am with no crying but a simple gesture of "daddy come pick me up." She seemed happy and did not have a runny nose. I brought her down and proceeded to prepare the formula.  I noticed that she kept staring at the sippy so I offered it to her.  She drank 2.5oz in 2 gulps and looked satisfied.  I offered her some semi-cold chicken and sweet potatoes.  She tried it but turned away.  I let her play with some of the toys.  Ironically, of all the cool toys at her disposal, she chose paper towel holders.  Funny, right?

Nothing says fun like a used paper towel container

My Jedi padawan is ready to complete her training

Selena was still half asleep when Joy kept cooing at her.  So I brought her over to let her check out sleepy mommy.

When I sat her back down to play, she started to get fussy and whiney.  Ah ha!  She might be hungry still!  So this time I heated up her chicken and sweet potatoes and brought back the elecare formula.  Sure enough, she ate like a champ.  In total, she drank 3.5oz formula and 1.5oz of solids plus some water.  This has been her best breakfast meal yet.

Right when Joy was asleep, Markus called and said in his German accent"hey, I'm your morning therapist today. Can you come and pick me up?"  So I rushed off to pick him up.  He is staying at a place 15 min away.  By the time we came back, Joy was already awake and eating.  Selena tried to feed her the homemade organic chicken and green beans but she did not like it.  So we went back to store bought chicken and sweet potatoes and carrots.  Joy was very attentive and playful with Markus.  She hand painted his legs with carrots. Perhaps one day she'll be another Picaso!  We had a nice discussion again about how much Joy needs to drink versus how much mom wants Joy to drink.  I find Markus to be a very honest and logical person which is, of course, not surprising since he's a behavioral psychologist.  He mentioned to us that we are getting closer to being "discharged" which I kinda figured since Joy is doing so well.  Since he needed some rest before his next session with another child, I took him back to his place. I love our conversations in the car.  We talk about the economy, the problems with today's medical profession and their view of feeding tubes, his adventures in other countries, etc. I can see how he thinks and where his heart is.  Markus is a great guy and I admire his genuine personality.  In summary, Joy ate 2oz formula and 1oz of solids in this feeding session. Not a lot but still solid.

Selena, Joy and Markus

Joy fell asleep in the swing for 15 min but unfortunately we had to wake her up to drive back to Maryland for her doctor apt with Dr. Weich. This was an important visit because we needed to see how much Joy lost in weight since she entered the program. 10% weight loss is acceptable but I knew Joy didn't lose this much because she still felt heavy to me. And of course, Joy did not sleep in the 1 hour car ride. Every parents nightmare, right?

We arrived early for the apt and received warmed greetings from the staff. Many of them know our plight and were ecstatic to see Joy without the feeding tube.  We met with Dr. Weich for what felt like an eternity.  He always stays with us for a long time.  It was great timing too because Joy started getting fussy and we knew right away it was meal time!  We popped open the jars of baby food and she ate 2oz of solids (carrots, green peas) along with 0.25oz elecare, some additional water, and some puffs.  Dr. Weich patiently observed the whole feeding session and was amazed at her progress. Based on the weight, Joy lost 14oz since last week which is a little more than 5% but certainly no where near the 10% threshold.  The only concern he expressed moving forward is increasing the volume of liquids but he contends that this will improve with time.  He also emphasized that babies self regulate and urged us to follow Joy's lead in terms of food and liquids.

As I have alluded to in my prior blog posts, Dr. Weich is the best pediatrician on the planet.  He was there in the beginning when Joy was diagnosed with milk protein allergy and GERD. He and Dr. Fishman referred us to Dr. Rekhtman who was also instrumental in providing medical care for Joy's early GI problems and setting up Joy's medical supplies with the supplier and getting things covered with the insurance company. Dr. Weich called several times a week (even sometimes several times a day) when Joy was admitted to the hospital. He fought hard (and pissed off a few docs along the way) to expedite appointments with a Ped GI specialist and the feeding team coordinator at Children's Hospital. And today he was able to see the fruit of his labor - Joy without her feeding tube. I cannot say enough about this man's determination and care for Joy, and we continually thank God for having him by our side.

Dr. Weich, the best pediatrician on the planet!

After the doctor apt, we rushed over to pick up my car at Executive Automotive Service.  Thanks to Bill Fowler, my car was fixed and ready to go.  Right when we were about to leave, Selena wasn't feeling well (low blood sugar) so she asked me to take Joy back in my car.  Selena was very hungry so she stopped off at Pho Nam.  That's our go-to pho place in the area.  Unfortunately it was rush hour traffic on a Friday evening so it took me a long time to get back to Alexandria.  But when I returned, I realized that we had locked the top lock of the front door so I had no way of getting in.  I texted Selena for her ETA and it took her another 60 min to arrive.  I was already dead tired from waking up so early today and Joy was still asleep so I took a short nap but awoke to sound of rain pounding on the roof of the car.  Pedestrians were running for their lives trying to avoid the tumultuous rain. Joy finally woke up so I got in the back seat and showed her a few youtube videos.  That was the best way to pass the time.  Right when Selena pulled in, Joy started to get fussy again and of course, I figured she was hungry.

For Joy's dinner, I first tried Selena's homemade green beans and chicken.  We figured that it was best to try something she may not like first.  She tasted it and then held a mini food strike.  I then tried green peas but she wasn't having it either, maybe because it looked too much like the green beans and chicken.  We popped open a new jar of carrots and voila, she started eating it.  I mixed in some green peas and formula, and also gave her some puffs just for the experience.  She ate about 2oz of formula and 3.5oz of solids. During the meal, she "pushed" hard and I thought she had pooped.  But unfortunately her diaper was only wet. So we administered another dose of Pedia-Lax and Joy cleaned out her system.  Afterwards, I gave her some grapes to eat. We peel them and then I break them into chunks so that she can chew and swallow.  I then finally had time to eat dinner. When Selena brought Joy over to the table, I decided to offer her some red peppers. She is still mastering the chewing motion but is starting to get the hang of it.

Overall, today was another solid day of eating.  I know it's been frustrating for Selena because she wants Joy to drink more formula.  But as Jennifer said to us tonight, it will come in time and Joy is where she needs to be right now.  It was also good experience to feed her on the go. Planning for the inevitable end to the program this weekend, I made plans with Yoon and Jenn for a Sunday dinner so that Joy has another experience eating in public.  So while Joy isn't drinking a lot these days, we are still encouraged by her progress.  I just hope the other families going through their tube weaning also can get to where we are today with Joy.

Day 4 - Adjusting to a "New" Joy

Joy seems to be gravitating toward her own schedule.  At 6am, I heard her toss around in her crib and then start to cry.  Again, we are NOT used to her crying in the morning.  I brought her downstairs and gave her a few toys.  I quickly made her formula and she gulped down 2oz in <1 min.  She felt much better but her nose was running like a faucet.  Figuring that she is still under the weather, I changed her diaper and put her back to sleep in the swing.

Fussy Joy in the AM

Selena and Jennifer Berry were texting throughout the morning about today's schedule and what to do about Joy's constipation.  Right before she went to bed, she was trying to push really hard.  Nothing came out except a few small tear drops for her effort.  Very sad indeed. Jennifer suggested that we get a liquid suppository that contains glycerin. So while Joy was asleep, I ran out to target/CVS to pick up some supplies.

While I was away, Joy woke up and appeared grumpy and fussy.  Selena spoke to Jennifer and they decided to try to feed her again since she only drank 2oz in the morning.  Joy ate 2.25oz of solids (chicken and star, sweet potato) and 1oz of formula.  Not bad for a mid-morning snack.

When I returned, Joy was covered in food so I changed her into a new set of clothes.  We decided to give her the Pedia-Lax before her next meal because she was struggling to poop earlier.  Dr. Weich (pediatrician) and Jennifer Berry both agreed to only give her 1/2 the dose since the formulation is for a 2-5 year old children.  I opted NOT to provide a picture here but let's just say immediately after, she pushed it all out.  Watching your child poop and grunt is a major milestone for me today. Selena was very proud of me.

Baby needs a new pair of clothes (not shoes)

While Joy was taking another nap, Jennifer and Heidi came by to discuss Joy's progress.  They emphasized and reinforced how far Joy has come in such a short period of time.  Selena is all about the numbers and kept pushing the goal of Joy eating at least 15oz of formula a day.  Markus, Jennifer and others have been saying all along that Joy is doing really well and that she may not need to drink that much formula anymore.  In the middle of the meeting, Joy woke up so I brought her in.  She was happy to see Jeni and Heidi and also make a few waves at them.  Not sure if it was intentional but it looked very cute.  Their recommendations were to offer more water (to avoid constipation) and relax and enjoy ourselves during the meal times.  We realized that Joy was starting to get a little fussy so we opted to go out to lunch at Pentagon Row with Heidi.  

We got all our gear and met up at a Thai restaurant. The food was ok but the experience was wonderful.  To be completely honest, I was nervous because the last time we took her out, Joy was so distracted.  I just didn't think she'd do well eating.  But on the contrary, it was amazing!  She was so curious about the world around her YET she still was focused on eating.  She ate 2oz of carrots, 0.5oz of chicken and stars, 1.5oz of formula, and extra water.  

When we got home, Joy crashed and took a nap.  But after only a 40 min nap, she woke crying.  It was strange because she was crying REALLY hard (not the fake ones when she just want some attention) and nothing seemed to console her.  We held her, gave her water, walked around, etc.  She kept crying.  So then we thought..."hey maybe she's hungry."  You have to understand that seeing our baby hungry is new to us.  We need sometime to adjust our thinking too.  The minute I put the jar of sweet potatoes on the floor, she already took out her thumb and was ready to eat.  Markus then arrived and she continued to eat the remaining carrots and a good amount of chicken and stars.  In between she took sips of elecare formula and water.  She was satisfied and started to do her happy dance (one day I'll get it on video).  

When everyone thought she was done, I thought, why not re-introduce puffs?  So I grabbed the container and gave her a bunch to play with.  I ate a few and then offered it to her.  She stuck out her tongue and kept trying to eat it. She's still learning how to move it around and often times she gets frustrated when it's too hard.  But all in all, it was a great experience and she seemed the puffs a lot especially since she gets to play with them.

Time to play with food

Eating Mum Mums

After another short nap, Joy woke up peacefully this time.  Jennifer came by to help us administer the prevacid meds.  She showed us to squirt the liquid on the side of her mouth.  I had the pharmacist flavor it with grape so Joy didn't get too upset by it.  Meanwhile, my mechanic called and informed me that my car is now fixed and ready for pick-up.  Thank you Bill Fowler for always being so reliable with my car repairs!!

For dinner, we decided to introduce blueberries.  It is a very healthy food with lots of vitamins.  She seemed interested and took a few spoons but then turned away and stopped opening.  She also ate some chicken and stars but it may have been too cold for her.  We thought she was done but she kept being fussy and crying when I took her away from the food.  I asked Selena to bring back the chicken and sweet potatoes and sure enough, she went to town and ate a lot of it.  All in all, she drank 2oz formula and 1.5oz of solids with some additional water to keep her hydrated.  This was a very valuable learning experience because she was communicating with us and saying what she wanted and what she didn't.  

Not sure about blueberries

Selena was starting to eat her dinner and I brought Joy to the table (after changing her diaper and clothes).  I started eating some grapes (courtesy of Kevin and Betty Fine) and noticed that Joy was interested.  Of course she would love grapes because so does her daddy!  Interestingly, she would suck the juice out and then try to bite the grape. She didn't appreciate the bits of grapes as she would push them out of her mouth.  Kinda cute.  She went through ~5 grapes and I stopped giving them to her because I was hungry and she kept biting my fingers with her gums.

Joy loves her grapes

In total for today, Joy drank 7oz of formula, 8oz of solids, and some water.  While Joy isn't drinking a lot of formula, she is making progress and we are happy about that.  We are hoping that she'll drink more formula before the program ends.  The feeding teams feels that Joy is doing really well and they have already broached the topic of a "discharge plan."  Selena feels that Joy needs to be able to drink more before we can leave.

The one thing we have realized is that Joy is like a new baby to us.  We are learning all the things that most parents learn in the first few weeks of life.  We are learning her signs and signals in regards to eating, hunger, and preferences.  And because she isn't eating/drinking a lot for each feeding session, she wakes up crying and hungry, which throws off her sleep schedule.  The feeding team promises that as Joy becomes more efficient with her meals, her schedule with normalize.  Let's hope so for our sake! With all the changes, it makes us feel like we have a new baby all over again.

Two Steps Forward, One Step Back

Selena and I woke up very early this morning (5am) because we could hear Joy tossing and turning in her crib.  Joy usually wakes up before us but she never cries (for hunger or thirst). She just plays in her crib and waits for us to get her when we're ready. I'm sure a lot of parents wish their kids would do that!  But today, we felt like this was a bit early for Joy so we brought her downstairs and I prepared some formula.  While waiting, she started to whine and cry a bit.  So I rushed back and offered her the sippy cup.  To our surprise, she gulped down 3oz within 2 min.  Once she was done, she was done.  She was much happier and was able to fall back asleep.

The mid morning snack session wasn't as productive.  Heidi (speech therapist) came and tried for over an hour.  Joy just wasn't ready to eat.  So we gave her some water and we put her to sleep. We also took this opportunity to get some rest too.

Resting (aka Facebooking)

After a short 30 min nap, I took Joy downstairs (new setting) to play.  Once I thought she was ready, I offered the sippy cup and she drank about 1oz.  She played some more and then Selena went to go pick up Marcus Wilken for the real feeding session.  Then something weird happened.  Joy started to mouth her toys, whine, and cry.  I quickly started prepping the food.  I picked Joy up and brought her to the kitchen. As I was warming her jars of sweet peas and chicken and sweet potatoes, I saw her licking her tongue as if to say, "I'm ready to eat daddy."  I sat her on the floor and then she proceeded to eat some sweet peas and more than half a jar of chicken and sweet potatoes.  By the time Selena returned with Marcus, Joy was almost done eating.  Joy returned to her happy little self again.

Eating her toys

Given that Joy was already done, I offered Marcus to stay for lunch. Courtesy of Erica Barnes, we had meat lasagne, bread, salad and corn.  It was a great conversation with Selena pushing hard for Joy to drink a certain amount of formula while Marcus was arguing that Joy may end up wanting more purees and less milk and that we shouldn't put a set number.  He also challenged us to stop counting how much Joy eats but rather let her tell us how much she really wants to eat.  And at the end of the day, Joy will eat enough because she can now communicate in different ways when she wants something and when she's done.  

While we were eating, Joy started to whine a bit so I picked her up.  I was busy eating my salad and everyone noticed that everytime I brought food to my mouth, Joy would open her mouth and try to eat my food.  So on the fly I decided to let her gnaw on the red peppers and corn.  She kept licking and gnawing at it and seemed to thoroughly enjoy it. So while Joy was not interested in her formula, she really enjoyed the pureed foods and fresh vegetables.  Overall I felt this was a great feeding session.

Joy took a very long nap (2 hours) which gave me time to clean up the house a bit.  The plan was for us to take Joy out and feed her in public on our own.  But since she slept for so long, I decided to head back to Maryland to pick up Joy's meds.  I also needed to drop off a few things at home and bring some more baby food too.  It was supposed to be a quick trip but it turned out to be a long adventure!

ZZZZZZZ

I was on my way back to VA when I started to notice a loud thumping sound under the hood.  It also occurred to me that the AC in the car stopped working.  I took a look at the dashboard to discover the engine temp was off the charts!  I quickly pulled over and looked under the hood.  The coolant fluid was BOILING over and spewing out of the container.  I panicked because I had Joy's meds that needed to stay cold. Luckily I also brought with me all the frozen purees which acted like ice cubes.  After calling my insurance rep, a few tow truck companies, and talking to Johnson Hsu for advice, I decided to drive back to Maryland and drop the car off at my mechanic.  I would drive a few miles and then pull over and let the car cool down.  I finally made it and my friend, Danny Chang, gave me a ride to the metro.  The metro ride gave me time to wind down and a short cab ride later, I was finally back at Gabe and Erica's place.  Whew!

Overheating in rush hour traffic

While I was away, Jennifer and Heidi came for the dinner feeding session.  Unfortunately Joy was really cranky and tired, and did not eat anything.  They also noticed that Joy has a runny nose so she may be getting sick. Two steps forward and one step back, right?

Joy took a short nap and then woke up again.  While Selena was preparing her food in the kitchen, Joy took her thumb out of her mouth and start to get excited for her food.  She ate 2oz of formula and 1oz of solids (chicken and stars puree and carrots).   Encouraging!

Small Steps Forward

For today, she drank 7.5oz of formula and 5oz of solids.  Progress!!

Day 2 - Slow Progress

It has been a rather rough start for us at the feeding program. I have been feeling sick the past few days with a sore throat, sneezing, and congestion. Selena also wasn't feeling well and had a massive headache.  It was almost to the point where she needed me to take her to the hospital. But we managed to stay afloat.

The therapists gave us specific instructions for the night of Day 1.  I fed Joy through the pump (5oz formula and 3oz of water) at 9pm and around 11:30pm, I made an attempt to remove the NG tube while Joy was asleep. Not easy by any means because pulling the tube could irritate Joy and cause her to wake up and cry.  Unfortunately Joy felt the tube being pulled out but thankfully she fell back asleep.

The next morning, it was a bit strange to get her from the crib.  I can't remember the last time when I've seen her face without the multiple layers of tape.  Joy gave me a smile and was quite playful.

Morning Play Time 

Somehow she knows she's being bad

At breakfast, Joy did ok. She drank some formula and she had pureed bananas.  She didn't eat a lot but we didn't lose hope.

For the mid-morning snack, we met Marcus Wilken, the child psychologist from Germany.  Aside from being tall, he's not what I pictured.  He is more of a free spirit, outside the box thinking person. He challenged us to think about Joy's needs and desires and to consider alternate ways of feeding her aside from the traditional yucky formula. We also talked about our concerns.  Joy was not drinking enough and we now face the new challenge of administering vitamins and meds without the tube.  Our fear is that she will not like the taste of something and stop eating.  Collectively we came up with some ideas of how she can get her vitamins through natural sources such as blueberries, meats, beets, hummus, etc.  He felt that Joy is old enough to try some of these foods in cooked purees, which after all, tastes much better than drinking a nasty prescription formula.  They are also things that she'll ultimately be eating one day.  She can't be on prescription formula forever!

Reading time with our therapist 

Lunch - Joy was not interested in eating the pureed foods but she did like the fresh oranges. She was learning how to hold and lick them.  Not an easy task for a 9 month old. We playfully would eat some in front of her and even eat some from her hands. The goal was to emphasize that this is food and that it is fun to hold, touch, smell, and taste it.  Heidi, our therapist for this session, tried other types of food but she wasn't very interested in anything other than licking oranges. Right when we were about to give up, we decided to try Neocate splash orange pineapple flavor (since she liked the fresh oranges).  This prescription flavored formula is designed for kids older than 1 years old but given that she liked the fresh orange, it was worth a try.  To our surprise, she seemed to enjoy it and kept drinking.

Add caption

Dinner - we went to the spectrum facility for an indoor play picnic. The team felt that we needed to get out and it would also help with Joy learning to eat in other settings. It was far too hot outside and a restaurant setting would have been too much for Joy at this point.  With a blanket on the floor, we gave her a few toys and slowly introduced various foods.  She had her best meal yet!  She ate a whole jar of sweet peas and most of the sweet potatoes.  She drank some formula and water as well.

Play picnic

At the end of the dinner session, we reviewed Joy's progress and concerns.  It was an encouraging day.  She had 4 wet diapers and 3 bowel movements.  We are still concerned about the lack of fluids.  The feeding team instructed us to give her some more water before going to bed and then if she wakes up, try to feed her formula and if unsuccessful, offer some water.

When we arrived home, Kevin and Betty dropped by to give us some home cooked chinese food.  Good timing since it was late and we hadn't eaten yet.  Yesterday, Erica Barnes dropped off huge tray of lasagne. bread, salad, and clementines (which Joy ate).  Very thankful!

This was the first night in the past 5 months that I didn't have to use the feeding pump!

Joy and Daddy

Intensive Phase - Day 1

The past few days of hunger induction have been very challenging. Despite cutting the volume of food through the tube by 40%, Joy still showed no signs of hunger and also did not eat more to compensate. But I realize that this is a process and that Joy needs to re-establish her relationship with food in her timing, not mine.  

Today we started the 1st day of the intensive phase of the tube weaning process. As I predicted, the therapists decided to not give Joy any formula or water through the feeding tube all day.  We have never done this before.  She was cranky, less playful, and easily irritable, which are definitely signs of hunger. She also took more naps during the day, possibly because she had less energy.

Our first feeding session went fine.  Joy seemed interested in eating (sweet peas, formula) and kept opening her mouth and at times, leaned forward to eat.  We also changed the setting and format with no high chair and bibs.  

1st Feeding Session

The 2nd feeding attempt was up and down.  The therapists tried to feed her but she seemed uninterested (probably because she just woke up).  So we let her play for a bit and then tried again.  This time, Joy ate fairly well with sweet potatoes and formula.  We also experimented with mum mums and puffs.  

On the 3rd feeding attempt, Joy was not interested in eating (she also just woke up) so we waited another 1 1/2 hours and I fed her with carrots and formula.  She seemed very interested and kept opening for more.

Joy After Her Last Meal Today

At the end of the day, we decided as a team to give her some food/water through the tube tonight and then to remove the feeding tube in the middle of the night.  Everyone wants to see how well she'll do without the tube tomorrow. This is a big step to take and we don't know what to expect.  Your prayers would be appreciated!

Tube Weaning - Day 3

And...we're off!!  We have initiated the Reduction phase of the Tube weaning process.  This phase involves cutting the amount of food Joy receives through the feeding tube by ~10% each day for 5 days.  By the 5th day, Joy will only receive roughly half of what she normally gets through the tube.  We still try to feed her by mouth prior to her tube feeds, and we record how much she eats and how each person is feeling throughout the process. The goal is to for Joy to feel hunger when we start the intensive phase of the feeding program on 6/24.  From what I understand, she will not receive any food through her feeding tube starting day 6.

Here is the feeding schedule for the Reduction phase:

Feeding Time	Tube Volume	6/19/13 (Day 1)	6/20/13 (Day 2)	6/21/13 (Day 3)	6/22/13 (Day 4)	6/23/13 (Day 5)
7:30	115 ml	70 ml + 45 ml H20	70 ml + 45 ml H20	70 ml + 45 ml H20	45 ml + 45 ml H20	45 ml + 45 ml H20
12:30	115 ml	115 ml	70 ml + 45 ml H20	70 ml + 45 ml H20	70 ml + 45 ml H20	45 ml + 45 ml H20
5:30	115 ml	115 ml	115 ml	70 ml + 45 ml H20	70 ml + 45 ml H20	70 ml + 45 ml H20
9:30	115 ml	115 ml	115 ml	115 ml	115 ml	115ml + 45 ml H20
TOTAL	460 ml					275 ml

• Day 1 - Joy was her usual self, playful and talkative.
• Day 2 - Joy seemed to be her usual self but she didn't eat as much, had trouble with her naps, and has started to show signs of constipation.  We were instructed to provide prune juice and additional water.  
• Day 3 - Joy was visibly upset due to constipation but slept much better.  Still no signs of hunger.

In the meantime, Joy has been progressing nicely with her creeping/crawling skills.  

Happy 9 Months!

Happy 9 Months to our "precious" Joy!  You are funny, wacky, and beautiful!

Changing clothes is always an adventure

Thinking hard together

I wonder where you get your sense of humor from

Too cool for school

Yay!  I'm a big girl now!

Did I mention that I love to build and destroy?

Shake Shake Shake!

She Crawls!

Through Montgomery County Infant and Toddlers Program, Joy receives physical therapy (PT) 2x/month to help with her delay in gross motor abilities.  The therapist challenges Joy with different exercises, especially to assist with pre-crawling and transitions such as sitting to tummy.  We also learn these techniques so that we can reinforce her skills throughout the week.  Tonight, Joy crawled for the first time and we got it on video!!  Check it out!

We recently switched to a new physical therapist who has been really pushing Joy during the therapy sessions. Here are some of her recommendations:

1.  Provide a lot of opportunities for tummy time.  During tummy time, Joy shifts her weight back and forth and learns how to use her arms and hands.

Tummy Time

2.   Conduct weight bearing on the knees.  A few times a day, we prop Joy up against a small couch or cushion and give her something to play with.  It is difficult at first but we rock her weight back and forth.  In this exercise, she strengthens her lower body, teaches her to push up, and also allows her to practice transitioning from semi-standing to sitting.

Weight bearing on knees

3.  Place desirable objects (i.e. favorite toys, iphone, etc) just outside the baby's reach.  Once Joy learned how to use arms, elbows and knees, we just needed to encourage her to reach, stretch, and coordinate her arms and legs.

Stretching while playing

Reaching exercises on tummy