Friday, June 14, 2013
Water, Water Everywhere!
Joy loves her water! She loves to drink it and play with it during bath time. She now likes to wash her hands in the sink after meals. I'm hoping she'll learn how to swim one day.
Saturday, June 8, 2013
Moving Forward with Spectrum
The Spectrum Pediatrics Team evaluated Joy in April and deemed her medically stable and ready for tube weaning. This was not a surprise since Joy no longer vomits during her feeds and has been eating some formula and pureed food. She just doesn't have the interest or drive to eat a lot. They also remarked how Joy was receiving WAY too much formula through the tube, which suppresses her appetite. We already knew this when Joy was at Georgetown Hospital. The doctors were pumping 30oz of high concentration formula/day through the feeding tube, despite the fact that we told them she was gaining weight at 18-20oz/day of regular concentration formula. The feeding team at Children's Hospital also came to the same conclusion.
With the support of many of our friends and family, we have secured a spot in the Spectrum Program that will be begin on June 24. One of the program requirements is that we stay close to their office in Alexandria, VA. We will be staying with our friends, Gabe and Erica Yu, who have kindly let us live/crash at their place while they are on vacation. Amazingly, they live ~5 min from Spectrum.
Months prior to making this decision, we told our doctors and therapists that we would enroll Joy into the Spectrum program if she didn't dramatically improve with traditional feeding therapy. Joy has made tremendous strides but still needs more time, which is unfortunate because our insurance coverage for feeding therapy is coming to an end. The good thing is Dr. Chatoor from Children's Hospital has heard of Dr. Marcus Wilken, the child psychologist/health educator who is part of the Spectrum Pediatrics Team, and other members of the Children's Hospital Feeding Team have also heard good things about Spectrum. We know we have their support and we are also thankful that Dr. Weich, our pediatrician, will serve as a medical advisor to Spectrum during the tube weaning.
We prayed about it and ultimately made the decision to move forward with the program because we are convinced that Joy needs an "intervention" to correct her relationship with food. Through months of food-associated pain, gagging, reflux, and vomiting, Joy learned that food is the reason for her suffering. There are times when she is really excited for her food but most often she seems to "tolerate" eating. Other times, she looks scared and anxious.
We need Joy to learn that food is a wonderful thing to enjoy. Based on what I've read and heard from other mothers, it will be intense and rough for everyone. Joy will be starving, whiny, cranky and her sleep cycle will be off. We will have to love her even more while at the same time, stay calm and avoid fighting with each other through the sleep-deprived days/nights and stressful situations.
We believe Joy is smart enough to figure it out. As of now, she drinks about 3-6 ounces of diluted formula per day, in contrast to the 25+oz for babies her age and weight. That's already a major improvement. Before therapy, she would not even open up for anything and would gag at any attempt to feed her. She has even mastered the skills for a sippy cup and loves water!
Please pray for us as we prepare for this program. Pray that Joy will learn to love food and that we can be strong for her.
With the support of many of our friends and family, we have secured a spot in the Spectrum Program that will be begin on June 24. One of the program requirements is that we stay close to their office in Alexandria, VA. We will be staying with our friends, Gabe and Erica Yu, who have kindly let us live/crash at their place while they are on vacation. Amazingly, they live ~5 min from Spectrum.
Months prior to making this decision, we told our doctors and therapists that we would enroll Joy into the Spectrum program if she didn't dramatically improve with traditional feeding therapy. Joy has made tremendous strides but still needs more time, which is unfortunate because our insurance coverage for feeding therapy is coming to an end. The good thing is Dr. Chatoor from Children's Hospital has heard of Dr. Marcus Wilken, the child psychologist/health educator who is part of the Spectrum Pediatrics Team, and other members of the Children's Hospital Feeding Team have also heard good things about Spectrum. We know we have their support and we are also thankful that Dr. Weich, our pediatrician, will serve as a medical advisor to Spectrum during the tube weaning.
We prayed about it and ultimately made the decision to move forward with the program because we are convinced that Joy needs an "intervention" to correct her relationship with food. Through months of food-associated pain, gagging, reflux, and vomiting, Joy learned that food is the reason for her suffering. There are times when she is really excited for her food but most often she seems to "tolerate" eating. Other times, she looks scared and anxious.
We need Joy to learn that food is a wonderful thing to enjoy. Based on what I've read and heard from other mothers, it will be intense and rough for everyone. Joy will be starving, whiny, cranky and her sleep cycle will be off. We will have to love her even more while at the same time, stay calm and avoid fighting with each other through the sleep-deprived days/nights and stressful situations.
We believe Joy is smart enough to figure it out. As of now, she drinks about 3-6 ounces of diluted formula per day, in contrast to the 25+oz for babies her age and weight. That's already a major improvement. Before therapy, she would not even open up for anything and would gag at any attempt to feed her. She has even mastered the skills for a sippy cup and loves water!
Please pray for us as we prepare for this program. Pray that Joy will learn to love food and that we can be strong for her.
Tuesday, June 4, 2013
The Many Faces of Joy
Warning: This post has a lot of cute pictures of Joy. Viewer discretion is advised.
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| Asian Pebbles? |
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| Resting in her couch |
Monday, June 3, 2013
Playful and Active
Joy is not shy about sharing her feelings. When she wants to be held, she will raise her arms and whine like any other child. Cute but annoying at times. She will make sounds (dada is her favorite!) and loves to reach and rip off the glasses from your face. Very lady-like indeed! Overall, she is a wonderful and joyful child. God gave her a great temperament and personality and we couldn't have asked for a better baby!
Saturday, June 1, 2013
Progressing Nicely
Joy is now developing nicely. She is sitting up and can rotate in both directions while on her tummy. Is she ready for her next milestones??
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| Drooling - precursor to teething?? |
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| Standing with some assistance |
Thursday, May 30, 2013
Having Fun with Food
Very often when we try to feed her in the high chair, Joy transforms from a happy, joyful baby into a scared, high anxiety baby. She will immediately suck on her thumb and turn her head away, not even looking at us. We talk and try to engage her but she will look away.
Through feeding therapy, we have learned to allow her to explore her food and limit her meals to 30 min max (as well as cut it short if things are going badly). We give her pureed foods and let her smell, lick, wipe, smash, etc. On good days, she will drink 3-4 ounces of 60-80% diluted formula and a few spoons of solids. On bad days, she will outright refuse to open her mouth for anything. Lately, she will get mad when she no longer wants to eat. I guess we all have our limits! But we are thankful for these baby steps and encouraged to see her making some progress.
Through feeding therapy, we have learned to allow her to explore her food and limit her meals to 30 min max (as well as cut it short if things are going badly). We give her pureed foods and let her smell, lick, wipe, smash, etc. On good days, she will drink 3-4 ounces of 60-80% diluted formula and a few spoons of solids. On bad days, she will outright refuse to open her mouth for anything. Lately, she will get mad when she no longer wants to eat. I guess we all have our limits! But we are thankful for these baby steps and encouraged to see her making some progress.
Friday, May 24, 2013
Children's Hospital Feeding Team
For the past month, we have been working with Donna Registad (occupational therapist) at Kennedy Krieger Institute and Laura McWade (feeding disorders coordinator) and Johanna Motz (speech/feeding therapist) at Children's Hospital in DC. Donna, who has loads of experience working with feeding disorders, helps Joy with her oral-motor skills (spoon, sippy cup, textures and sensory issues), Laura monitors the medical aspects (e.g. reflux, hydration, calories) and Johanna gives us support and advice on feeding. They are absolutely wonderful and I can't say enough about them. They respond to my emails during the week, late at night, and on weekends, and overall, genuinely care about Joy. Overall, I couldn't be any happier to have them by our side.
Yesterday, we also had the privilege of having Joy fully evaluated by Dr. Irene Chatoor and the rest of the feeding disorder team at Children's Hospital in DC. Dr. Chatoor is a world-renowned physician who specializes in feeding disorders. She has written many books and we were impressed by observations and advice. Dr. Chatoor and the team expressed optimism that Joy would continue to improve, unlike some of the doctors we had encountered in the past. I think that's the first time that anyone in the health professional field has expressed hope for Joy.
When Joy was admitted to Georgetown in January, one of our doctors told us to consider getting the G-tube because it would take years before she would ever eat again. Joy is resilient (and stubborn) but she has already shown us glimpses of hope. We recently cut 20% of the volume she receives through the feeding tube along with feeding her every 5 hours instead of 4 hours. We now notice that she is more interested in eating and drinking her formula. Yay!
Yesterday, we also had the privilege of having Joy fully evaluated by Dr. Irene Chatoor and the rest of the feeding disorder team at Children's Hospital in DC. Dr. Chatoor is a world-renowned physician who specializes in feeding disorders. She has written many books and we were impressed by observations and advice. Dr. Chatoor and the team expressed optimism that Joy would continue to improve, unlike some of the doctors we had encountered in the past. I think that's the first time that anyone in the health professional field has expressed hope for Joy.
When Joy was admitted to Georgetown in January, one of our doctors told us to consider getting the G-tube because it would take years before she would ever eat again. Joy is resilient (and stubborn) but she has already shown us glimpses of hope. We recently cut 20% of the volume she receives through the feeding tube along with feeding her every 5 hours instead of 4 hours. We now notice that she is more interested in eating and drinking her formula. Yay!
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