Once we got in the feeding clinic room, we were able to get his clothes back on him and he finally calmed down. He really likes the feeding clinic coordinator that we work with so that helps. She helped defuse the situation by making small talk before beginning any "food-work". Jax did VERY well. He sat in the highchair and smiled and clapped as I sang his special spoon-song. We worked on taste and texture today. We used apple juice mixed with water in one cup, apple sauce mixed with water in another and finally straight applesauce (very thin stage 1 baby food).
We practiced with the flavored water and he did great. We followed with the thicker water and finally a real taste of stage 1 baby food. He did AWESOME. Of course it was just a dab in his mouth, but that was the first time ever he's had it! We were taught how to go back and forth between the textures, and always bring him back and end with the flavored water, and how to use TINY amounts of the actual "food". So we'll be working on this over the months and working our way up. This will/should slowly but surely work on his gag reflex that he's acquired from the feeding tubes and early months of reflux and vomiting.
We met with the GI specialist after this and he was SO impressed with seeing Jaxon crawl around and trying to pull up on is leg (Jax couldn't even roll over when he last saw him 8wks ago). Of course the doctor said he is amazed at Jaxon's health and very hopeful for him. He agrees now that small meals may in fact be a possibility for him in the future. The doctor actually wants us to slowly increase his rate of food per hour to get him even more time off the pump, and to also take his vent off more frequently. He feels that since he's vented 21 hrs a day, his stomach is most likely producing more acid to keep up. He wants his stomach to feel volume in it (even though it means some of his vomits will produce more volume). He really thinks it's time to start making his stomach work. He's extremely happy and surprised at his health. I asked if we should check his iron levels since we've stopped giving him any, and the doctor said his complexion and color look so great that there's no question of iron deficiency, although they will check on the next appointment.
Jax had great appointments today which fills us with so much hope. I asked the doctor if he felt that Jax was on his way to being cured. He smiled and said that he thinks Jax is doing amazing and is on his way to having a much more free life. I'll take that ~
:::The doctor did say that he didn't know if the natural supplements were the key factor in Jaxon's progress since he has no education in that field, but he said he's not saying it isn't the key factor either:::
**Please send more prayers out to baby Grant. He has a central line infection and has been re-hospitalized. Sending out tons of thoughts and prayers to you Shawna! Keep up the good fight.