So I have been trying to ask people about getting some therapy for Mercy for a while now. My peditrician, who, God bless him, is WAY overworked. Has said he would do something but nothing has happened yet. We finally contacted Central Valley Regional Center, which she would be able to get help from, but not until July 13th.
We also have started with the "who is going to pay?" Private insurance VS Medi-Cal VS CCS VS the program at CVRC. I know I am new, but I really want to know why it is so much work to get this going? IT is obvious to everyone that she needs it. Why can't I call and just get someone out here tomorrow to teach me what to do. It seems like I could go to train at a school to become a therapist in the time it is taking to get someone to check her out!
All that aside, I know that therapy will help, but she is going well. I know that she is hitting her toys on purpose. It looks like it isn't but she smiles every time she touches one and when she stops hitting them, she gets mad. She hears my voice and looks for me. When I walk into her room and she doesn't get picked up right away she crys. So she must be able to see me.
Her hearing isnt good, but we can't have the test until July 25th that would get her help right away.
It's frustrating to have to wait and wait.
I want to feel like I am doing the best that I can for her, but I think I am slacking. I hope this starts to turn soon because I am not one of those people who call and complain and bug, and I feel like I might have to learn how to do that very soon.
Friday, May 27, 2011
Wednesday, May 25, 2011
My big girl.
Mercy is 4.65 kilos as of today. She is 58 cm. She isn't as big as the doctor would like, but she is doing ok. She just got prescribed an acid reducer, so hopefully she will not be barfing like she was. The doc wants her to grow 15 grams a day and right now she is at 9 per day.
She likes to roll from side to side and on a flat surface, she will spin around in circles. She can hold up her head for a few minutes at a time before she gets tired and it bounces all around.
Her hips are finally settled just right and she is going to be having her cleft surgery at the end of next month. She will also, along with the nose job, have more plastic surgery done on her eye, which will make it close a lot better while she sleeps.
She is not making a ton of sounds, just crying, but she has a big hearing test coming up so we are hoping to resolve the issue of hearing soon.
Her eyes, so far, are doing well. She is tracking, so she can see a little bit. She loves to watch lights, but hates the sun.
Everything else is going ok. Nothing super huge is going wrong so we are happy with where we are right now.
She likes to roll from side to side and on a flat surface, she will spin around in circles. She can hold up her head for a few minutes at a time before she gets tired and it bounces all around.
Her hips are finally settled just right and she is going to be having her cleft surgery at the end of next month. She will also, along with the nose job, have more plastic surgery done on her eye, which will make it close a lot better while she sleeps.
She is not making a ton of sounds, just crying, but she has a big hearing test coming up so we are hoping to resolve the issue of hearing soon.
Her eyes, so far, are doing well. She is tracking, so she can see a little bit. She loves to watch lights, but hates the sun.
Everything else is going ok. Nothing super huge is going wrong so we are happy with where we are right now.
Tuesday, May 24, 2011
Don't let me hurt your feelings.
I am having a hard time figuring out what to say to people. Sometimes they just don't understand what they are saying and I am trying not to dash THEIR illusions. Today a gal at the pharmacy asked how old Mercy was. So when I told her six and half months she asked the usual.
Preemie?
No, she has a genetic condition and she's missing some genes.
Oh, she replies. She'll catch up soon.
Well, no she wont, but for some reason I don't want to tell her this, because she thinks she is cheering me up my assuring me that my kiddo will be normal soon. So maybe its a nice thing to let them think they are making me feel better.
I really do feel guilty if someone asks about her and I tell them. Of course they asked, but they really don't want to know ALL of the details. But how else can I explain why she is tiny and wasn't born a preemie. Someone even asked me if her genes would grow back.
Now I don't expect everyone to understand what is going on medically. I had to research a ton to try to grasp what was going on in my situation. But it is so strange to me how people try to assure me that it is going to be ok, and they don't even know me. They have no idea what is going on in Mercy's tiny body. Why do we do that? What is so wrong with a baby who is different?
I am trying to talk to Melodee about baby Mercy and let her know that she is "special" but I just say different from you and your brother. She wants to know how she is different, because Melodee knows she is special, but isn't sure what I am getting at yet.
"Baby Mercy is almost sitting up mom! She is getting so big. Look she is holding me!"
She isn't almost sitting up but she does roll from side to side pretty well and she can hold up her head for a few minutes at a time before tiring out. She especially likes to wiggle down to the end of the crib. But to explain why she isn't crawling I tell her that our bodies are all like a big puzzle. There are lots of pieces that go into every bit of us. Baby Mercy is missing some pieces in her puzzle, that is why it is taking longer for her to get bigger and do big girl things. At five and a half, this means nothing to Melodee. But she wants to know when sister will eat ice cream with us and when she will get to go to school. I want to be truthful so I tell her we will just have to wait and see what baby Mercy will do and when she will do it.
I am not sure when the other two will realize that there is something different about baby Mercy. PRobably not until we have another child and they start to do things Mercy cannot. But I am trying to let them know that it is OK to not be doing what everyone else is doing. And they don't need to assure me that she is going to catch up, because they love her just the way she is now.
Now if only everyone else didn't want to assure me it is going to be ok. Because I am learning that when things are not just how you expect, you can grow and learn and teach others about what really matters.
Preemie?
No, she has a genetic condition and she's missing some genes.
Oh, she replies. She'll catch up soon.
Well, no she wont, but for some reason I don't want to tell her this, because she thinks she is cheering me up my assuring me that my kiddo will be normal soon. So maybe its a nice thing to let them think they are making me feel better.
I really do feel guilty if someone asks about her and I tell them. Of course they asked, but they really don't want to know ALL of the details. But how else can I explain why she is tiny and wasn't born a preemie. Someone even asked me if her genes would grow back.
Now I don't expect everyone to understand what is going on medically. I had to research a ton to try to grasp what was going on in my situation. But it is so strange to me how people try to assure me that it is going to be ok, and they don't even know me. They have no idea what is going on in Mercy's tiny body. Why do we do that? What is so wrong with a baby who is different?
I am trying to talk to Melodee about baby Mercy and let her know that she is "special" but I just say different from you and your brother. She wants to know how she is different, because Melodee knows she is special, but isn't sure what I am getting at yet.
"Baby Mercy is almost sitting up mom! She is getting so big. Look she is holding me!"
She isn't almost sitting up but she does roll from side to side pretty well and she can hold up her head for a few minutes at a time before tiring out. She especially likes to wiggle down to the end of the crib. But to explain why she isn't crawling I tell her that our bodies are all like a big puzzle. There are lots of pieces that go into every bit of us. Baby Mercy is missing some pieces in her puzzle, that is why it is taking longer for her to get bigger and do big girl things. At five and a half, this means nothing to Melodee. But she wants to know when sister will eat ice cream with us and when she will get to go to school. I want to be truthful so I tell her we will just have to wait and see what baby Mercy will do and when she will do it.
I am not sure when the other two will realize that there is something different about baby Mercy. PRobably not until we have another child and they start to do things Mercy cannot. But I am trying to let them know that it is OK to not be doing what everyone else is doing. And they don't need to assure me that she is going to catch up, because they love her just the way she is now.
Now if only everyone else didn't want to assure me it is going to be ok. Because I am learning that when things are not just how you expect, you can grow and learn and teach others about what really matters.
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