Sunday, May 31, 2009
Friday, May 29, 2009
Tuesday, May 26, 2009
Sunday, May 24, 2009
Wednesday, May 20, 2009
Tuesday, May 19, 2009
Sunday, May 17, 2009
We are continuing the acupuncture and antibiotic. Jax had physical and occupational therapy today and did very well. Brady surprised us with his first little tooth coming in today. I'm a little shocked since he's been sleeping straight through the night all week. He's been such a good boy overnight for us. I hope I didn't just jinx us!
In other news, we figured we were going to have to cancel the boy's baptism that was scheduled for this weekend. We've decided to keep the date and have it at the hospital. We've been trying to get these kiddos baptised for awhile now, and instead of another cancellation, we've decided to stop waiting for a "better day" and seize this day. I think we could all use a little renewing of spirit.
Here are a few photos from the past weekend:
One of Jaxon's acupuncture stickers. He has one on each wrist, and each thigh.
Jaxon having his hair washed!
Look at that clean hair!
Shannon giving Jax a smile~
I can't get enough smiley-Jax photos.
Brady is hanging in there with the long hospital days.
1. Antibiotic to clear up an overgrowth of bacteria in the intestines
2. Medical acupuncture (we started this Saturday morning) to end nausea and vomiting
3. TPN (Total Parental Nutrition - Intravenous feed)
We are obviously hoping the antibiotic and acupuncture are the combo that's working. We'll begin very small amounts of formula back into the J-tube this week and work our way up to find his threshold. The goal is to obviously be completely enterally fed (GJ tube) and no TPN. We'll see though.
So here's the GREAT news:
The MRI looks clear and as of 11:30am on Sunday, Jaxon has not thrown up since 8pm on Saturday...yes...you read that correctly. That's over 15 hrs of no vomiting. He has never known such a stretch of normalcy like this. We are besides ourselves with happiness, and his smiles tell us how good he feels.
A GI doctor met with us this morning and said their mission is to get Jax to feed thru his GJ tube and hope it's the antibiotic and acupuncture helping him. So we are pretty happy that the GI team is on the page as us. I asked his opinion (I ask every new GI doc we come in contact with) what his chances are. He said each case is so different so it can be frustrating to know. He said to hope for a healthy life of using the GJ tube (which will be turned into the button very soon) for bolus feeds (so he wouldn't be hooked up all the time). So I have my answer...my hopes have turned to this. All the grim possibilities that he has are so awful to even think. I'm praying like crazy that the TPN isn't the solution, because if it is...he'll have unthinkable possible life threatning issues because of it.
One day at a time is all we can do. Please keep Jax in your prayers and I will keep you all updated daily. I apologize for no pictures since I didn't download any last night while home. I have some ridiculously cute ones coming, I promise.
UPDATE: Jax threw up at 12:30pm and 2:15pm and had a super grumpy episode. We're hoping the vomiting didn't just take a nice long break, or he possibly did have some heaving overnight that was just not caught by the nurse. I consider dry heaving and retching a vomit. Either way, he is better now than he was two days ago, but still having issues. We continue to fight the fight.