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.