Tuesday, October 27, 2009

GI Follow up

Jaxon had his GI follow up and another Feeding Clinic meeting at Children's Hospital today. We started with the feeding clinic (which is located inside the GI dept). Jaxon was absolutely fine until we brought him in the room where he gets weighed and measured. He had the worst meltdown we had ever seen. He actually clawed at me when I tried to put him down to get his clothes off. He screamed and cried so hard that I myself had to fight back tears. I couldn't even get him to stay on the scale because of his flailing around. He had to be put on the floor scale (like the kind they use at veterinarian offices), and even that was a struggle.

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.

13 comments:

Jessarella said...

Sounds like some very encouraging news today! Yay Jaxon!

Doubly Blessed said...

This GREAT news!

Jenn said...

This is so wonderful. Do you think it some of it is the supplements/holistic approach you are taking? What does the GI specialist say about that helping him?

Laura said...

OMG! I'm in tears of joy right now. So much so my DH got scared, but when I told him about your wonderful news about Jax and taking small foods he understood right away. THIS IS WONDERFUL!!!!!!! IT's WORKING!!!!!! I gotta go find some tissues.

Amanda said...

What awesome news!!! I can not even imagine how proud you must have been when he was eating his applesauce :) Way to go Jax!!!!

Priscila said...

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cat said...

Oh Annie, I am so happy for you. He is making great progress.

erinlaughs said...

Amazing news! I'm so happy and excited for you and Jaxon!

Heather said...

Oh, Annie this is fantastic news! Congratulations!

NormalOnesLeft said...

Yeah Jaxie!!! Love you.
Auntie Krista

shawna said...

OMG, how did I miss this??? He ate! Actual food! I am so excited. I am so impressed with Jax's progress. It is definitely encouraging.

Jen & Jeff said...

Holy Crap! That's awesome!

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