Have I mentioned before that sometimes progress is frustrating to me? It is. I like to understand things. I want to know why things are the way they are and why they work or don't work. I like to have reasons. But you know what? When it comes to Raya, I don't usually (EVER) get what I want.
When things started to go wrong with her shortly after she was born, I wanted to know why. I wanted to know why she cried for hours at a time every evening no matter what we did for her. I wanted to know why, even though I had narrowed my diet down to 8 mild foods (try getting enough calories to breastfeed from 8 foods!), she still couldn't keep anything down. I wanted to know why the spitting up turned into forceful projectile vomiting. For 18 months now, I have wanted to know why all these tests keep coming back normal or near normal when it is quite obvious that there is something wrong.
And now, to add to my list of unrealistic demands that will most likely never be met, I want to know why my child who has needed to be fed directly into her small intestine for the past 9 1/2 months can suddenly tolerate getting all 900 of her formula calories and all 5 ounces of her pedialyte fed into her stomach.
Maybe it's a little ungrateful of me to feel that way. It probably is. I'm not ungrateful though, I'm SO glad that we're not cleaning up massive amounts of vomit several times a day anymore, with or without blood in it. I'm grateful that I don't have to sit there and hold a towel or a bowl in front of her while her whole head turns beet red as she throws up until her stomach is empty and then dry heaves for 5 minutes at a time. I'm thrilled beyond belief that she will put food in her mouth without gagging & vomiting now. So yes, I really am grateful. Often though, that gratitude that comes each time we make a step forward is accompanied by the frustration of not understanding why or how we are taking that step. I think that because of how hard things were the first 18 months of her life, a part of me feels a need to have to do something more in order to resolve things. Can it really be so easy that all we have to do is wait this out and her body will take care of things on its own?
As I was laying awake in bed last night (I took an excederin migraine for the most horrible headache I've ever experienced and then couldn't sleep after) Raya got restless and started crying in her sleep again. I could tell that her stomach was bothering her and I found myself kind of wanting her to throw up so she would feel better. That thought was immediately followed by, "What in the world is wrong with me that I'm wishing my kid would throw up?!?" Really, I just wanted her to feel better but she never threw up. She cried in her sleep 4 or 5 times before I fell asleep but she didn't wake up so I didn't bother her. Hopefully her body will continue to adjust and she'll be more comfortable while she's sleeping.
There. It feels good to have that off my chest. Things really have gone surprisingly well considering that this is a sudden and drastic change that should have been a big shock to her system. She has a history of not tolerating change well, which was why her doctor warned me that we may be in for a rough weekend and offered to wait until Monday to change the tube in case we had to put the GJ back in. So far, things are continuing in the right direction though. The most difficult thing so far is that we had to decrease the rate she's being fed at to 60ml/hour, so now instead of being on the pump for 14 hours a day, she's on it for 17.5. It's a giant pain in the rear because she hates it as much as we do. When it's 114 degrees outside like it was today, all she does is sweat the whole time it's on in spite of the ice pack inside the backpack.
She's still not nibbling (eating is too strong of a word) as much as she was before we went to Idaho but she'll get there. She had a make-up PT session yesterday and OH MY GOODNESS it was the absolute WORST session she's ever had. Worse than the first session we had with this PT when all Raya did was cry when Jessica tried to touch her. The only difference between that session and yesterday's session was that Raya is bigger and stronger now and she doesn't cry herself into vomiting anymore (knock on wood). All she did the whole time we were there was scream and cry and try to cling to me. I even had to leave the room at one point just so her PT could stretch her a little. If there's one thing we learned from taking a 2 week long trip, it's that Raya really does benefit from all of her therapies! We can't wait to see her OT on Tuesday. Hopefully she can get some good sensory work in and Raya will start returning to her normal little self.
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