What an odd title to a blog entry. I’m honestly not sure what to title this one, as I am not sure I know how to wrap my head around the events of the day.
Cora, as you know, if you are a regular follower of the blog or if you know us personally, has had a feeding tube now for over two years. She had her first feeding tube, the NG tube, the one that went into her nose, placed in April 2011. Then in July of 2011, she had a pretty major surgery and had a G tube placed in her stomach. Early on, the feeding tube was a total nightmare. She threw up A LOT and even though she had the tube, she was still sick quite often. But after a lot of tweaking to her diet and finding the right concoction of medications, Cora finally stabilized around Christmas of 2011. That was a tough year, and we ended that year with Cora being 100% tube fed. She consumed nothing by mouth. But, she was growing (finally!) and she was developing and learning new things, so it was fine.
Then in 2012, Cora started showing a little more interest in food and drink, and started allowing things in her mouth. For a LONG time, she still wouldn’t swallow anything, but would put just about anything in her mouth and not freak out or throw up. This was progress! Then she started swallowing some, and then even started going through cycles of weeks of eating enough that we could cut back on a feed or two during the day. But then in true Cora fashion, she would cycle back to feeling yucky for not obvious reason and would go back to not wanting to eat or drink, so would be 100% tube fed again.
The cycles got more drastic. She would eat enough by mouth on her “good” cycle that would be only be about 40-50% tube fed, and would eat the rest of her calories by mouth. On a bad cycle, she would have terrible reflux episodes, she would be crabby, I assume from not feeling well, and I would have to tube feed her all of her nutrition. We went back to the neurologist right before Christmas 2012 to ask him about the cycles, and he said that it’s all neurological, and is very much related to her brain injury. He said until her brain matures a whole bunch, maybe even as late in life as when she starts puberty, she will go through these cycles and there really won’t be any rhyme or reason to it other than that’s just how her brain functions. But of course said that the goal would be to have the “bad” cycle not last more than a day or so. A person can totally live just fine with have one bad day every couple of weeks!
Well about 2 or 3 months ago, Cora’s oral intake increased a LOT, and I was cutting her tube feeds down so much they were almost non-existent. I was feeding her once or twice in the morning, and then nothing the rest of the day. I kinda kept quiet about it, since she has cycled before, and I can’t handle getting my hopes up too much because it just hurts too much when she cycles back to the “bad”.
Then about a month ago, as I was praying for Cora and her eating, I had this strong urge to try again getting her to take her medication by mouth. She has NEVER done this, and most of her medicine is pretty yucky, and the last time I tried, she threw up. But I had to try, and she did it!!! Then literally that day, she decided to eat and drink a LOT, so the next day, I decided to skip all of her feeds all day long, and see what happened. Well she did great!
Over the past month, I basically have not tube fed her. She had a bad day and a half last weekend, and consumed basically nothing, so I caved and tube fed her several times. I actually took this REALLY hard and got really down about her slipping back in to the “bad” cycle. We never know how long the cycle will last, and I just hated seeing her regress. But this only lasted a day and a half! Not bad!! She’s back to eating and drinking again.
Today, then, we had an appointment with the feeding team at Children’s. I was so pleased to report to them that Cora basically hasn’t been tube fed in about a month (I was told we don’t have to count the bad day and a half because all people can have a bad day & a half and still be OK). After confessing to them that Cora has been eating and drinking 100% of her intake by mouth, they measured her height and weight, and she GREW!!!! Not much in weight (only 200 grams), but she grew an entire inch in the past 3 months!
So game plan moving FORWARD: They want me to put the tube supplies away for the next 6 months (!!!) and do everything in my power NOT to tube feed her. They said if she gets dehydrated, THEN use the tube. But let’s see what she looks like in 6 months, and if we can go with NO tube feeds and she can GROW, then her tube can come OUT at Christmas!! (What a Merry Christmas THAT will be!!!)
And so I say all of that to say that all of you prayer warriors out there, let’s FLOOD the gates of Heaven about Cora. Let’s pray she really has turned this corner and she really is eating and drinking like a normal 3-year-old. Let’s pray we are in the final 6 months of her having a feeding tube! (Could this really and truly be the end???)
It says in scripture to PRAY WITHOUT CEASING! Let’s do that. Actually, when we adopted Cora, her foster mom sent with Cora a plaque that had been in her house, and in Korean, it says “Pray without ceasing.” God has already moved mountains in this little girl’s life, and I’m certain He’s not finished showing off.
THANK YOU, Jesus, for the multitude of miracles you have already worked in this girl’s life. Please continue healing her body and her brain so that she can safely have her feeding tube removed. Amen!
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