I'm so frustrated.
My mom was going through our baby books. She just had to read off information like when we started crawling, walking, eating, etc... Most of those were before 12 months. A great majority of what she named of was before my son's age. He will be nine months in a few days. He doesn't do much of anything. He tries to hold his head up, but he's not proficient. He tries to lunge himself forward to sit up, but he never makes it all the way. He tries to hold himself up and crawl when he's on his belly, but he shortly comes back down & rests. He can't really hold his balance when he holds himself up. He rolls from belly to back, but I'm not sure if it's because he wants to or because his balance is just that bad. We have to have a pillow underneath his chest for every tummy time or he will not lift himself. He can shake his rattle for about 20 seconds, then he drops it because he can't hold it.
He's getting to where he understands that he needs to put his arms up in the air if he wants us to get him. This gives me hope that one day he can tell us when he needs to go to the bathroom using a some kind of signal, at least.
He's trying to open his hands and touch things, but his hand looks like a crab claw when he does it. He's getting a lot better at reaching for things, but he doesn't hold his arm still when he gets his hand to them, the just knocks things around.
He's made progress in the area of physical therapy. He's not near as stiff as he used to be, but I'm not sure how much of a good thing that is. He's only 20 pounds, but he looks and feels so much heavier than other 20 pound babies.
I know he won't be able to make words and form sentences at the usual time. I can't keep his speaking valve on him as much as I would like because he has a hard time exhaling with it on.
It's getting so much harder for me. He wants to move more. I'm almost to the point where I can not do this anymore. I need more help.
He's too tall for his bouncy bounce. He doesn't tolerate his walker. He barely tolerates tummy time. Sometimes, he doesn't want to sit with me or play the games we're used to. I need something new. I need more resources. I need more help getting equipment. I need to know what is out there!!
He needs help with trunk coordination. He can't flex both sides of his body at the same time. It's one side or the other. He needs to learn to entertain himself. He needs to learn to eat sitting in something other than my lap. He's still taking four naps a day and sleeping nearly 12 hours at night. I know his musces need more energy and whatnot, but it's hard to believe that he's using any when he has more cellulite than I do.
Before I started typing this, I felt really hopeless. I couldn't see all the progress he had made. I still feel that way, a little. I mean, I feel like my life is put on hold and sometimes I forget that he's going to school in a few years and that we still don't have a confirmed diagnosis. I guess part of it is selfish, too. I'm so ready to spread my wings. I feel trapped, almost.
I love my boy and I'm going to do what I have to for him, but I'm having a hard time fitting my dreams into this scenario.
It's not my dream to work part time at the law office the rest of my life. I want to have a studio; a warehouse where I can create all my fantasies: designing the clothes, making the clothes, and even shooting the models in the clothes/accessories.
I have people telling me all the time that I shouldn't give up hope and that I'm an awesome mom and they try to give me all this "easier said than done" advice. For once, I'd just like to be a normal mom that gets to look on babycenter.com for some stupid advice like sleeping patterns and eating positions. It's so hard to find any advice on feeding positions for enternally fed babies. But, I may be making it hard because I don't believe that my baby needs to lay in bed all damn day.
I'd like to take my baby to WalMart without anyone else's assistance.
I'd like to be able to pack up and go to Tulsa whenever we wanted to and not just for a doctor's appointment or to be in the hospital.
I want to get on with my life.
My mom was going through our baby books. She just had to read off information like when we started crawling, walking, eating, etc... Most of those were before 12 months. A great majority of what she named of was before my son's age. He will be nine months in a few days. He doesn't do much of anything. He tries to hold his head up, but he's not proficient. He tries to lunge himself forward to sit up, but he never makes it all the way. He tries to hold himself up and crawl when he's on his belly, but he shortly comes back down & rests. He can't really hold his balance when he holds himself up. He rolls from belly to back, but I'm not sure if it's because he wants to or because his balance is just that bad. We have to have a pillow underneath his chest for every tummy time or he will not lift himself. He can shake his rattle for about 20 seconds, then he drops it because he can't hold it.
He's getting to where he understands that he needs to put his arms up in the air if he wants us to get him. This gives me hope that one day he can tell us when he needs to go to the bathroom using a some kind of signal, at least.
He's trying to open his hands and touch things, but his hand looks like a crab claw when he does it. He's getting a lot better at reaching for things, but he doesn't hold his arm still when he gets his hand to them, the just knocks things around.
He's made progress in the area of physical therapy. He's not near as stiff as he used to be, but I'm not sure how much of a good thing that is. He's only 20 pounds, but he looks and feels so much heavier than other 20 pound babies.
I know he won't be able to make words and form sentences at the usual time. I can't keep his speaking valve on him as much as I would like because he has a hard time exhaling with it on.
It's getting so much harder for me. He wants to move more. I'm almost to the point where I can not do this anymore. I need more help.
He's too tall for his bouncy bounce. He doesn't tolerate his walker. He barely tolerates tummy time. Sometimes, he doesn't want to sit with me or play the games we're used to. I need something new. I need more resources. I need more help getting equipment. I need to know what is out there!!
He needs help with trunk coordination. He can't flex both sides of his body at the same time. It's one side or the other. He needs to learn to entertain himself. He needs to learn to eat sitting in something other than my lap. He's still taking four naps a day and sleeping nearly 12 hours at night. I know his musces need more energy and whatnot, but it's hard to believe that he's using any when he has more cellulite than I do.
Before I started typing this, I felt really hopeless. I couldn't see all the progress he had made. I still feel that way, a little. I mean, I feel like my life is put on hold and sometimes I forget that he's going to school in a few years and that we still don't have a confirmed diagnosis. I guess part of it is selfish, too. I'm so ready to spread my wings. I feel trapped, almost.
I love my boy and I'm going to do what I have to for him, but I'm having a hard time fitting my dreams into this scenario.
It's not my dream to work part time at the law office the rest of my life. I want to have a studio; a warehouse where I can create all my fantasies: designing the clothes, making the clothes, and even shooting the models in the clothes/accessories.
I have people telling me all the time that I shouldn't give up hope and that I'm an awesome mom and they try to give me all this "easier said than done" advice. For once, I'd just like to be a normal mom that gets to look on babycenter.com for some stupid advice like sleeping patterns and eating positions. It's so hard to find any advice on feeding positions for enternally fed babies. But, I may be making it hard because I don't believe that my baby needs to lay in bed all damn day.
I'd like to take my baby to WalMart without anyone else's assistance.
I'd like to be able to pack up and go to Tulsa whenever we wanted to and not just for a doctor's appointment or to be in the hospital.
I want to get on with my life.
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