Someone is Teething Again

Two Milestones in a Day!

Today Joy had 2 major milestones accomplished...

1.  She FINALLY decided to feed herself.  After all this time, she acted like a queen and grunted or pointed whenever she wanted food.  Today she fed herself mum mums.

2.  When I was busy washing the dishes, I heard Joy grunt and cry in the other room.  I rushed over to find her standing and reaching for toys.  Great job Joy!

Happy Birthday Uncle David and New Update

Joy was a good baby today. Perhaps she was excited because it was her uncle's birthday.  Happy Birthday Uncle David!

In other news...

Since my last update, we have been huddling with the doctors (pediatrician and feeding disorders coordinator at Children's Hospital) and consulted with Jennifer Berry at Spectrum Pediatrics.  The doctors are worried that Joy is not eating as well because of reflux and/or constipation and/or teething. Jennifer thinks that Joy is gaining too much weight (17 lbs and 13oz on 7/23 from 17 lbs and 2oz on 7/2) which means she's just eating too much and isn't hungry for the next meal.  She may also be more interested in table foods because well, they just taste better!

We all agreed to make the following changes:

1. Increase reflux meds (prevacid) back to the normal dose of 2.5ml/day (we are now day 5 into this but it will take 2-3 weeks before we see any benefit); we had dropped her dose to 1.4ml starting the first week home
2. Monitor her bowel movements and give pedia-lax if necessary (something we stopped using after the first week home)
3. Change Joy's feeding schedule so that there is more time between meals and offer table foods as the main meal for lunch 

Yesterday was the first day implementing these changes...Joy still wasn't as excited for the pureed foods but she did seem to enjoy the table foods we offered...

Before (chicken, mushroom, broccoli, peppers, grapes)

After (at the end of the day)

And well, I guess Joy is also getting some calories eating mommy's hair.  She seems to have a fetish for eating hair and sucking her thumb at the same time.  Poor mommy!

Yummy Hair!

But it's ok.  It's the summer and it's hot outside...and we know the heat can make people (and babies) do crazy things!

Cool looking Joy

The other great news is that grandma (my mom) will be flying over from CA to help us out.  She arrives on 8/3.  Joy can't wait to play with grandma.  It's been a long time!

Grandma and Joy (Christmas 2012)

Feeding Difficulties Return

I am a bit miffed at how things can change so quickly.  After Joy returned from completing the Spectrum feeding program, we were amazed at how enthusiastic and determined she was to eat.  She showed hunger signs (fussiness and crying) and drank her formula (not a lot but a vast improvement from before) and kept eating her puree foods with fervor and zeal.    

Fast forward a month, she is now sucking on her thumb and turning away from food in the highchair. She has the same scared/confused look when we approach her with the spoon. We have to give her distractions such as toys and jar lids just to get her started.  Once she's engaged with these things, she opens her mouth but only until a point.  She is also drinking a lot less formula than before (~40-50% less).  The past several days we have seen her gag/choke on the same food she ate during the program. What happened?!?!?  

It has been a very frustrating several weeks for us.  We feel like she has regressed a lot and we aren't sure what to do.  Do we stop feeding her on a schedule (every 4 hours) and just let her get hungry again?  We have a scheduled call with Jennifer Berry (Spectrum feeding therapist) tomorrow but I'm afraid she is going to tell us to just hang in there.  I feel like with each passing day, Joy is getting worse and the stress level continues to rise.

   

Please pray for us as we continue to struggle through this together.  

Announcement

It is sad to see a baby cry, especially when it is an eviction notice:

"Eviction Notice: Please note that you are required to vacate the premises within 27 weeks as a new tenant is expected to move in on January 29, 2014."

At least she's a good sport and excited to be a future big sister!

Happy 10 Months!

I can't believe our little Joy is now 10 months old.  We've had a lot of fun times with her.  Can't wait to see her grow up!

Work'n that Banana Teether!

Fun with Dada

Loves to destroy the play mat 

Yummy Toys

Growing up fast!

This is what happens when we can't handle her anymore

Fun with Water and Music

Aside from poking daddy's eyes and teeth with her fingers, she does know how to have fun....

When Joy was still being breastfed, she used to cry everytime she had a bath. She had food-induced rashes on her body and water irritated her skin.  Today, she enjoys bathtime a lot and loves to splash her toys. 

Another recent development is Joy's love for music.  I guess she picks up after her daddy.  =D Once day I'll teach her to sing and play guitar.  But for now, she learns through her toys that play and promote music. Check out her dance moves!  Maybe a future American Idol? 

Dealing with New (and Old) Obstacles for Joy

The past week has been a bit of a struggle for the Liang family.  We've been dealing with a number of obstacles such as food allergies, teething and some old bad eating habits from Joy.

Allergy Testing 

We brought Joy to see Dr. Heidi Isenberg-Feig from Johns Hopkins University.  Dr. Isenberg saw Joy briefly right before she was admitted into the hospital.  After we were discharged, I spoke to her on the phone and I could sense her heart break for our baby.  So when we brought her back last week, Dr. Isenberg was ecstatic to see how much Joy has grown and that she no longer has the feeding tube.  The main purpose of the visit was to figure out what Joy is allergic to.  She performed a skin allergy test which involves pricking the skin with positive control (histamine), negative control (saline), and various potential allergens.  We tested Joy for the most common potential food allergies such as cow milk, eggs, soys, corn, wheat, casein (milk protein), peas, etc.  As we suspected, Joy tested positive for cow milk and potentially for peas (which may explain last week's allergic reaction).  The plan is to conduct a complimentary blood test to check for antibodies to milk and peas and to re-test Joy in a year.

Teething

We were warned that once Joy started to eat, it would stimulate her gums and would likely accelerate the teething process.  Sure enough, Joy has been experiencing a mix of cranky spells, crying, low grade fever and overall unhappiness.  We are offering her teething toys and some baby tylenol, both of which has worked wonders!  The great thing is...we can see her first tooth.  =D

Eating more but at what cost?

There is a delicate balance to feeding a baby who has gone through post-traumatic feeding disorder.  You want your baby to eat enough to gain weight but also not to push too hard which could lead to reverting back to a non-eating baby.  

We brought Joy to the pediatrician last week and were able to thankfully say that she gained 2 ounces in the past 2 weeks.  It is not a lot but you have to understand that Joy hasn't gained any weight in months and also lost some weight during the feeding program.  But while she has maintained her weight, she has also recently displayed some old bad eating habits.  

She continues to drink less formula (6-10oz/day) than other babies her age and even now the pediatrician is a bit concerned (he now wants us to mix formula into the solids).  And recently when we try to offer solids, she will often suck on her thumb and resist eating.  Sometimes she will pull out her thumb to eat and other times it requires a toy or object to distract her while we feed her.  While holding the object, she will keep opening for food but then go back to her thumb on occasion.  Granted that is what some parents need to do to get their child to eat but Joy wasn't like that during the program.  I remember her dancing after every bite and engaged in eating.  But perhaps that's because she was starving at the time.  She was only eating 10-15oz/day compared to these days when she eats anywhere from 18-28oz of food/day.  

Recently, she will look away when I offer the spoon.  Could she not be hungry even after 4 hours from her last meal?  Or maybe she's losing interest in her food?  Or maybe she doesn't like the high chair?  Either way, she's definitely not as excited as before and doesn't seem interested in new foods.  We've tried prunes, apples, rice cereal, pears (puree and fresh) but to no avail.  I guess we have to be persistent and try again later.  Thankfully she does enjoy grapes, oranges and rotisserie chicken from costco.  Funny, they're all things I love too!

At this point, I'm not sure if I should be overly concerned but I do sense that things are different than before.  Praying that Joy continues to take steps forward.  

Creepy!

On a good note, Joy has been very active lately.  She is creeping along the floor at a rapid rate and displays a lot of curiosity with the world around her.  In an effort to contain her, I've installed some security gates.  I know one day she'll find a way around (or over) them but for now, I hope they keep her out of trouble!

  

First Week Home

It has been a whirlwind week for us as we transitioned from the feeding program to home. We drove back on Monday (after cleaning our friend's house).  It felt surreal in many ways to be home and how so much has changed.  I was a bit nervous because I wasn't sure how Joy would react. Would she fall back into her non-eating habits? To avoid this, we were instructed to remove any old associations for now (e.g. high chair). Thankfully, Joy hasn't missed a beat and continues to thrive with food. We are still letting her eat on the floor as we did during the feeding program.  We have fed her in a booster seat a few times so that she is comfortable with it. We will need to use it on the go.

After First Meal Home

Increase in food

Since returning home, we have noticed an increase in the total amount of food she consumes each day (ranges from 18-24oz of solids and formula).  Because of this, she no longer cries or gets fussy when she wakes up or during the day. In the morning, she plays in the crib with her stuffed animals.  But once I show her food, she gets excited. We spoon feed her until she becomes lethargic and stops opening her mouth. There is also a noticeable bulge in her belly.  Haha.  And of course, she shows off her excitement with her "happy dance"during her meal.

Still not drinking enough formula

While she still enjoys her baby food purees (Earth's best brand), she hasn't been drinking a lot of formula.  The amount has remained steady at around 7-10oz/day.  To put things in perspective, a normal 9 month old drinks about 20-25oz/day but eats far less solids than Joy.  While we are happy that Joy is eating, we are a little concerned that she isn't getting enough protein and vitamins that her body needs. We hope that this will increase over time.

Constipation

Her body is still adjusting to food and we still have to give her a daily dose of pedia-lax to relieve her constipation.  We are also now adding miralax to her food to help as well.  She still wets her diaper 4-5x/day and she often isn't interested in water which means she's hydrated enough.  We just hope in time that she will drink more fluids so that she doesn't continue to struggle with going #2.

Medications

One thing we were really worried about was how Joy would handling taking medication.  In the past, we would just put it through the feeding tube.  But thankfully we have been able to spoon feed her medication, including her prevacid as well as benadryl (see below for reason).

Allergic Reaction

This week, we also witnessed Joy's first allergic reaction.  Poor baby! She started scratching and her face became puffy with lots of bumps.  We are not really sure what she is allergic to. It could be something she ate (we started introducing some new foods) or it could be the new cleaner (7th Generation Lemon Grass Scent).  To cover all possibilities, we wiped and cleaned her toys and mat, stopped using the new cleaner, and went back to cooking/steaming her jars of food.  No allergic reaction since then.

Allergic Reaction

But despite all these concerns, it was a good week to be back.

Riding her horse on July 4th

Happy Independence Day!

How appropriate...Joy is free from her feeding tube!