Nathan has been seen by the Dysphagia Clinic at Primary Children's since he was 5 months old. Following his open heart surgery Nathan had a very difficult time for a couple of months having too much in his stomach and though he was drinking about an ounce with his cleft palate nurser (bottle), he completely quit and wouldn't have anything to do with oral stimulation. He was refluxing and throwing up several times a day through his nissen and he was in a lot of pain during feedings.
Dr. Molly O'Gorman (Dr. Molly as she calls herself), took Nathan right under her wing. She has been very frank with us about Nathan's problems, but what I really love about her is that she is a mother. She speaks to me from a Mother to Mother standpoint and makes me feel informed and empowered about Nathan's medical decisions. She is a rare jewel of a doctor and I hold her in the same high regards as Dr. Park, Nathan's ENT.
From a g-tube standpoint Nathan is doing quite well. We are going to try to change his G-tube brand to see if it helps the leakage/drainage problem we have been having. With Nathan not having to work so hard to breathe and his heart function getting better they actually had to REDUCE his calories! He is gaining a little too well for his heart to keep up with the work. He is now taking 5 cans of Nutren Jr. a day which totals to be 1200 calories a day. Nathan is weighing in a a whopping 26 lbs and is just shy of 35 inches tall. That puts him in the 5 percentile for his weight and 8 percentile for his height. His overall weight/height ratio (which is what the doctors actually look at to determine correct weight for the child) is 98%. That is Nathan's BEST EVER figure!)
From an eating standpoint... well... yeah. Nathan did chomp down on celery and peaches for Helene (the feeding therapist). He also put Nutella in his mouth and swallowed a little bit. We had considered sending Nathan to Kennedy Krieger or Hershey Penn State for intensive feeding therapy. Both the doctors cautioned that we would not see the results that we hope for because Nathan's feeding problem does not stem from a mental/emotional disorder. It is from SERIOUS physical impairments. She cannot recall a child in her clinic who has had 18 operations alone in their facial area. Only 1 other child at Primary's has had jaw surgery twice for Nathan's diagnosis. They are VERY IMPRESSED with the feeding abilities that Nathan has and pointed out that the muscles we use to eat with have been cut through MANY times on Nathan and they are extremely weak. Asking him to go through that kind of therapy would be like asking me to run a marathon a month after having a c-section. I wouldn't ask it of myself and so I shouldn't expect it of my child. Helene gave some good feeding ideas and then said that Nathan needs to be seen 1x per week from both Early Intervention and the Orem Pediatric Rehab Center.
I wish that Nathan didn't have this G-tube and would just eat. The lessons we've learned as a family in regards to patience is phenomenal! I am grateful, though, that for the first time in 31 months Nathan is STABLE and no more immediate surgical intervention is required. We are very fortunate that feeding is our big issue.
Dr. Molly and Nathan
Helene Taylor (Feeding Therapist) and Nathan
Gotta love the chubby cheeks!
Nathan LOVES his Nacho Cheese Doritos. He won't eat them, but he loves to lick them. He asks for his CHIPS all of the time!
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