Archive for the ‘Venting’ Category

or maybe I’ll be grateful in the long run. Either way, it needs to be said.


Whew… OK… I feel a bit better now. I know there are currently a lot of holes in this year’s updates, but the reality is that feeding Alyssa is no picnic. In fact… it’s kind of the the picnic you plan and everything goes wrong to the point where you wind up with ants in your socks and you are sick from days from the food. It has been two years of a roller coaster of feeding issues. The first bit was very “sunshine and lolipops” and a whole lot of “grin and bear it.” At this point, I am at my wits end. Alyssa’s clinical trial is over in 6 weeks and I cannot wait. We cannot alter her diet/feeding methods until then. We could pull her off, but I do think that the meds are helping to some extent so I don’t want to do that. It’s been two years…what’s another two months… right? LORD I HOPE SO!

We saw a nutritionist and she gave us ways to boost calories. It is just SO hard and I feel SO mean because Alyssa simply detests eating. It seriously takes an average of 45 minutes to an hour to get her to eat 4-6 ounces of milk on a standard day. I did the math the other day and between sleeping and feeding we are left with about 4-6 hours a day where we are awake and happy. I just want happy. Our little girl is this bright shining light, but when it comes to feeding… not so much.

So, we wait. There is a deadline. We can make it. There is an endpoint or at least a restart point. I keep reassuring myself that it isn’t that far away. The last hour before bed is the worst hour of our day. The fighting her to eat, then giving her her meds and praying that she at least keeps down enough food to sleep for the night. Give her her meds first and she fights feeding harder, and let me tell you…the meds taste like frickin cherry candy and the girl still hates it. I just loathe the fact that each night no matter how calm the day goes… 9 days out of 10 it is going to be stressful at the end. I loathe that I lose my patience and want to run from the room. I loathe that I know my husband is feeling every bit as helpless as me.

Once the study is over, I am hopeful. There are a bunch of calorie boosters we will try. In addition we will get her a stomach emptying test to see how things are flowing. Then, she’ll start on an appetite stimulator and a stomach emptying speed stimulator. The hope being that we can get it to where she FEELS hungry. I seriously don’t think she even knows what hungry is. If that fails, then on to the G-tube. Something up until recently I was VERY against. However, after seeing first hand what a blessing of a tool it is… it may be what needs to happen. It will be an icky six weeks after the operation, but if it has to happen…again there will be an end point. I just want the stress removed from our dynamic. The G-tube is not an easy or simple fix…so we want to try everything else first, but at least if the stress of meal time is removed…she may learn to love eating.

Ah I feel better now. She did so well today up until bed time with eating. I have been striving to enter meal times relaxed and confident that she will eat. Here’s hoping that combined with her strong will results in us getting through this next couple months…


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