Tag Archives: GI

Remember the Moments

“We do not remember the days, we remember the moments” – Cesare Pavese

Today was a pretty amazing day.  Definitely didn’t start out that way, but something amazing happened that I will always remember.

Today, we had a follow up with our GI doctor; our first since having switched over to the blenderized diet.  Started out just as any other appointment, waiting room, exam room, routine height and weight, nothing special.  Braxton is now 26.3 pounds and 32 inches long! He has gained a little over a pound since we started the new diet 6 weeks ago.  He is continuing along his growth patterns just fine.  When our doctor came in, he went through his normal routine of questions to see what has changed.  For the first time, in a long time, I was able to tell him that everything had been great! Braxton has vomited maybe 4 times in 6 weeks (and each time was due to feeding him too quickly and not anything to do with intolerance of the homemade blend). This is a HUGE turnaround from having dealt with vomiting several times EVERY DAY! He took Braxton off his medications since his vomiting was under control and considering he hadn’t been on them in over a week anyway.  We were waiting on refills, so he was without them, but turns out he doesn’t even need them now. Yay!

FINALLY! Finally, we have found something that works! But, that’s not even the best part.  Our Dr continued to examine Braxton, and then he sat Braxton right in front of him to examine him and Brax reached out to touch the doctors face.  His pacifier fell and Braxton leaned over the edge of the exam table to see where it had fallen.  When he realized it wasn’t there (mom picked it up) he focused back on the doctor.  He held steady eye contact and continued to reach out for the doctors face.  Braxton has a fascination with glasses, so we knew he was trying to get them off the doc’s face.  As the doctor moved back and forth Braxton continued to follow him and reach with both hands for his face.  The doctor then grabbed Brax under his arms to move him back and Braxton instead stood himself up to start bouncing, and all the while he was smiling….he was playing with the doctor.

And then it happened…. our doctor made a comment about how interactive Braxton was with him this visit and that he had never been like that before.  He said he was so happy to see such progress from Braxton considering where he was when he first saw him.  He said he was so happy that he wanted to CRY.  As I sat and watched him continue to play with Braxton I noticed the tears well up in his eyes and heard his voice waver as he tried to hold them back.  He had genuine emotion and was truly happy to see just how far Braxton has come.  It was an amazing moment.  Amazing to see that this man was more invested in my child’s success than I thought.  And it wasn’t simply the eating part of it.  He was thrilled to see Braxton growing and thriving and reaching milestones they never thought possible.  It warms my heart to know we have such a great doctor who truly cares for his patients. I wish I had gotten a picture, but I was just as caught up in the moment….and yes, I had to fight back tears too.  This is one of those moments we’ll always remember.  We may not remember today, but we will always remember the moment one of Braxton’s doctors was literally moved to tears over the outstanding progress little man has made.  This kid is destined for greatness.

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A Step Back

Well, the saying goes…”2 steps forward, and 1 step back.” That’s been the case with Braxton since the beginning.  He accomplishes something great or we get good news, and then all of a sudden something isn’t right. =/

In the week or so before we ended up in the hospital with pneumonia, we noticed a decline in Braxton’s appetite.  Just so you know where he’s fallen from. Braxton was on breastmilk for 10 months (yes, I pumped all that time for him) and then on Similac Advance Formula for the last 2 months of his first year.  He was up to taking 6 ounces, 5 times a day.  He has the G-Tube, but we offer him a full bottle and let him drink what he will, then we put the rest through his tube.  He was drinking anywhere from 4-the full 6 ounce bottle ANNNDDD even eating a FULL jar of pureed baby food 3 times a day…no you know where all his rolls came from! Hehe Well at his 1-year birthday his GI doctor switched him over to Pediasure instead of whole milk.  Since Braxton was not eating a “normal” diet for a one year old the Dr did not want him to become malnourished and start losing weight. Pediasure would give him all the calories he needed plus all the vitamins and nutrients he needs. Anything we gave him above that would just be extra and useful in preparing him to learn to eat on his own.

At first, Braxton was throwing up EVERY feed as soon as we switched over to Pediasure.  Turns out with the higher calorie content of Pediasure, it was like we were overfeeding him compared to the formula he was on previously.  Basically it was like we had jumped from 6 ounces to 8 ounces of formula. Well naturally that would cause him to throw up….but I’m afraid from this point on the damage was done.

We played with the volume a little bit and gradually worked him back up to the 6 ounces 5 times a day. But, he stopped taking the bottle and stopped eating the pureed foods. 😦 We got him up to drinking about 3 ounces but still he would only take about half a jar of baby food as opposed to the full one he was getting before.

Well before the hospital stay, he pretty much stopped eating altogether.  We had to put his entire feed through his G-Tube and he wanted nothing to do with the pureed foods.  Working with our speech therapist, we decided that because of all the vomiting he had done that his throat was probably sore and it was actually hurting him to eat. As he began to associate the hurting in throat or nausea with feeding, he just decided to stop eating.  We will eventually stop doing something that causes us discomfort or pain, and that is what Braxton did.  Then he ended up in the hospital and didn’t eat for 3 days [he was on IV fluids getting the fluids and electrolytes he needed, but no food].  Now, Speech therapist says that in that short time it could be that his stomach shrunk so the 6 ounces we are giving has again become too much for him. Blah. So we’re back down to 5 ounces and gradually working back up to 6.  Thankfully the 5 ounces is staying down, but he seriously just wants absolutely NOTHING to do with the bottle or food.  We’ve only been able to get him to take mayyybe an ounce of his bottle, usually half an ounce and only like 4 bites of food.  This is a HUGE regression and not a good thing at all.  😦 He’s also been teething for what seems like FOR-EV-ER! He had a corner of tooth poking out, but it’s gone back into the gum. His gums do like a bit swollen and he’s gnawing on everything he can get his hands on, so this could also be contributing to his lack of appetite, but we don’t know for sure.  So many variables here.

Between us and the speech therapist, we are at a loss.  Pretty much out of ideas to work him back up to eating like he was before.  Called his GI doctor today, but haven’t heard back.  He would be the one to give us other suggestions or make some kind of change.  We see him next Monday anyway, but I thought this was enough of a concern for him to address sooner rather than later…he must not think so or he would have called back. UGH.

Uber frustrated.

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