A Month In ...
We are a month into Strensiq for Segunda. We had heard other patient anecdotes regarding the medication. All positive with a few reporting some side effects. The most common is the site injection sores. Here is how it is going for us:
The first four injections had terrible site injection pain. The site became red, swollen and very painful even to graze the spot. Segunda let us know if we accidentally touched it and told us to "never touch my owie ever ever again." But the next rotation of injections saw a markedly smaller reaction, and now there isn't one at all. We are 11 shots in. This means we are just shy of a month.
In the beginning, she suffered acute anxiety over the shots and would begin hyperventilating and panicking the moment I headed towards her refrigerator. She would shriek for daddy to hold her hand. Now, while she isn't fond of them and she sometimes still cries, she is starting to accept them as routine.
Now for the fun stuff. In less than a month, Segunda is learning what is like to be pain free. She has never known anything other than pain. Never. And yet, she still learned how to walk. She stilled learned how to love her new family. She still learned her alphabet. She learned how to count. She still had a wicked sense of humor. And there were times when she was cranky. Really cranky. Now, she is a blossoming little flower. Her sense of humor has burgeoned out into most of the day now. She speaks more intelligibly. She sings all the time. She runs from A to B. She jumps and she jumps and she jumps. She couldn't jump before. Now she does. She walks up and down the stairs with the help of the banister, but she walks. She eats like a horse. Before we were lucky if we could get a few Cheerios into her, now she eats two full bowls of oatmeal every morning before school and sometimes demands a banana on top of that. She sleeps better and more soundly. And she is demanding karate and ballet classes and is working to potty train so that she can have those classes.
Segunda is such an amazing child. And I'm so privileged to be able to call her mine. She is teaching us so much. When I'm down in the dumps because I have a headache or some other minor thing, I can look at my tiny tot and her bowed arms and legs and her dimply, impish smile and it suddenly doesn't matter. This child will conquer the world.
The first four injections had terrible site injection pain. The site became red, swollen and very painful even to graze the spot. Segunda let us know if we accidentally touched it and told us to "never touch my owie ever ever again." But the next rotation of injections saw a markedly smaller reaction, and now there isn't one at all. We are 11 shots in. This means we are just shy of a month.
In the beginning, she suffered acute anxiety over the shots and would begin hyperventilating and panicking the moment I headed towards her refrigerator. She would shriek for daddy to hold her hand. Now, while she isn't fond of them and she sometimes still cries, she is starting to accept them as routine.
Now for the fun stuff. In less than a month, Segunda is learning what is like to be pain free. She has never known anything other than pain. Never. And yet, she still learned how to walk. She stilled learned how to love her new family. She still learned her alphabet. She learned how to count. She still had a wicked sense of humor. And there were times when she was cranky. Really cranky. Now, she is a blossoming little flower. Her sense of humor has burgeoned out into most of the day now. She speaks more intelligibly. She sings all the time. She runs from A to B. She jumps and she jumps and she jumps. She couldn't jump before. Now she does. She walks up and down the stairs with the help of the banister, but she walks. She eats like a horse. Before we were lucky if we could get a few Cheerios into her, now she eats two full bowls of oatmeal every morning before school and sometimes demands a banana on top of that. She sleeps better and more soundly. And she is demanding karate and ballet classes and is working to potty train so that she can have those classes.
Segunda is such an amazing child. And I'm so privileged to be able to call her mine. She is teaching us so much. When I'm down in the dumps because I have a headache or some other minor thing, I can look at my tiny tot and her bowed arms and legs and her dimply, impish smile and it suddenly doesn't matter. This child will conquer the world.
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