Wednesday, February 28, 2007
Rambling Again
So, I thought I would write again. This has been a busy couple of weeks to say the least. I am healing very well from my surgery. I've had a very minor infection because of everything, but I'm on medication and feeling much better. Like I've written before, they did find a little bit of endometriosis. The doctor said it wasn't as aggressive, just in a spot that was more painful.
Ella is doing so well. Anyone that sees her on a fairly regular basis seems to notice. Anyone who sees her less often or in pictures on the blog will notice a bigger difference. Is she getting better? YES. Is it still a long road ahead...YES!!
The eye doctor on Monday didn't seem very concerned at this point. Ella has what's called "exotropia", which says her right eye goes out instead of being lined up with the left eye. Because of this several things take place. One is that Ella usually only looks through her left eye. The brain is smart enough (bc God created it that way) to shut down the eye that is drifting so that it isn't receiving two messages. We still aren't sure exactly how well she sees out of either eye, but a test at the end of March should be able to help us. We still patch her left eye (the stronger one) once a day for a couple of hours to help "strengthen" the weaker eye. She is learning to take the patch off (as I just had to put a new one on as I'm writing) but it's actually a good skill...at least she is aware of the patch and knows what she wants and is able to take it off. Small blessings. For now Ella wears her glasses daily, but only usually when she's sitting in her highchair, car seat, or stroller. Laying on the floor and rolling is NOT conducive for glasses.
Speaking of rolling...she rolls ALL day long, she's heading this way as I type. She can only roll one direction, but we are working on the other. She can roll all over the room, but only to the left if you are looking at her from behind. This is due to something I've mentioned before called her ATNR which "locks" her into her right side. Pretty much so explain this, she has the reflex to hold her head to the right (chin to right shoulder). We work DAILY on breaking this reflex, but it's a very slow process. We talked about it in PT and OT this week bc it's strengthening one side of her body (the one she uses more) and the other side is weaker, which is causing her do things lopsided. Imagine if you worked out one side of your body...your right arm, leg, abs, and back were all stronger than the left...that's what she's starting to deal with. We are having to "break" the reflex so she's more even. Along with this she also struggles with her right hand. She usually has is pretty clenched and it rarely comes completely out and relaxes. This is a very normal issue with children with brain damage, but it's something we work on daily. It makes it difficult for her to grasp, pick-up, or hold anything in her right hand. This doesn't mean she's left-handed as that isn't learned or determined till later.
Onto the neurologist appointment. Well, Ella weighed in a little over 22 lbs. She has NO problem gaining weight!! Her head is still on the same track and that's a good thing. He seemed a little disappointed in her development since the last time he saw her. I think he was hoping she'd be closer to sitting than she is. Here is the list of what she should be doing by now...F is where he has her failing this task (wish they could come up with something better than "failing") and P is where she passed:
Initially shy with strangers:F
Plays Pat-a-Cake: F
Feeds Self Cracker: P (this might be stretching it, but she's trying)
Resists toy-pull:F
Plays peek-a-boo: he didn't grade this one, but she's trying to do this
Works for Toy out of Reach: P
Sit, looks for yarn: F
Sit, takes two cubes: F
Thumb-finger grasp: F
Passes cube hand to hand: F
Dada or Mama, nonspecific: F
Turns to voice: P
Imitates speech sounds: P
Bear some weight on legs: P
Sits without support:F
Stands holding on: F
Pulls self to stand: F
Chest up arms supporting: P
Sit-head steady: F
Rolls over: P (even if only one way!!)
Some of these might sound crazy, but it's all stuff that kids should do by the time they are 10 months old. Honestly, I can look ahead and see what's on the list for 10-12 months and my heart sinks. I know that she is doing so much better, but we are getting further and further behind on the charts and that is very hard for my heart and my pride. I'll be honest, the pride really takes over sometimes. I want my child to excel at something...not be pitied or looked at strangely.
Another subject that I brought up with the neurologist is a diagnosis. I know, the question, "Well, what's wrong with her exactly?" is one that I'm not looking forward to. As she gets closer to 1 year of age I start to really notice the vast difference between her and her friends. So, I asked..."what does Ella HAVE?". The answer is unclear. As of now we can call it Cerebral Palsy, however the doctor is not diagnosing her with that. He says it's way too broad and includes so many things. That is probably the term I would use with strangers bc it's easier than explaining, but he says that his diagnosis is "Developmentally Delayed".
We will see her Developmental Pediatrician on Friday so I will update more next week on where they "plot" her. Ella and I will be traveling to Des Moines for a weekend of festivities with the Michell/Cook families. Please pray as I travel with her alone that I have the strength that only God can provide for this trip.
Ella is doing so well. Anyone that sees her on a fairly regular basis seems to notice. Anyone who sees her less often or in pictures on the blog will notice a bigger difference. Is she getting better? YES. Is it still a long road ahead...YES!!
The eye doctor on Monday didn't seem very concerned at this point. Ella has what's called "exotropia", which says her right eye goes out instead of being lined up with the left eye. Because of this several things take place. One is that Ella usually only looks through her left eye. The brain is smart enough (bc God created it that way) to shut down the eye that is drifting so that it isn't receiving two messages. We still aren't sure exactly how well she sees out of either eye, but a test at the end of March should be able to help us. We still patch her left eye (the stronger one) once a day for a couple of hours to help "strengthen" the weaker eye. She is learning to take the patch off (as I just had to put a new one on as I'm writing) but it's actually a good skill...at least she is aware of the patch and knows what she wants and is able to take it off. Small blessings. For now Ella wears her glasses daily, but only usually when she's sitting in her highchair, car seat, or stroller. Laying on the floor and rolling is NOT conducive for glasses.
Speaking of rolling...she rolls ALL day long, she's heading this way as I type. She can only roll one direction, but we are working on the other. She can roll all over the room, but only to the left if you are looking at her from behind. This is due to something I've mentioned before called her ATNR which "locks" her into her right side. Pretty much so explain this, she has the reflex to hold her head to the right (chin to right shoulder). We work DAILY on breaking this reflex, but it's a very slow process. We talked about it in PT and OT this week bc it's strengthening one side of her body (the one she uses more) and the other side is weaker, which is causing her do things lopsided. Imagine if you worked out one side of your body...your right arm, leg, abs, and back were all stronger than the left...that's what she's starting to deal with. We are having to "break" the reflex so she's more even. Along with this she also struggles with her right hand. She usually has is pretty clenched and it rarely comes completely out and relaxes. This is a very normal issue with children with brain damage, but it's something we work on daily. It makes it difficult for her to grasp, pick-up, or hold anything in her right hand. This doesn't mean she's left-handed as that isn't learned or determined till later.
Onto the neurologist appointment. Well, Ella weighed in a little over 22 lbs. She has NO problem gaining weight!! Her head is still on the same track and that's a good thing. He seemed a little disappointed in her development since the last time he saw her. I think he was hoping she'd be closer to sitting than she is. Here is the list of what she should be doing by now...F is where he has her failing this task (wish they could come up with something better than "failing") and P is where she passed:
Initially shy with strangers:F
Plays Pat-a-Cake: F
Feeds Self Cracker: P (this might be stretching it, but she's trying)
Resists toy-pull:F
Plays peek-a-boo: he didn't grade this one, but she's trying to do this
Works for Toy out of Reach: P
Sit, looks for yarn: F
Sit, takes two cubes: F
Thumb-finger grasp: F
Passes cube hand to hand: F
Dada or Mama, nonspecific: F
Turns to voice: P
Imitates speech sounds: P
Bear some weight on legs: P
Sits without support:F
Stands holding on: F
Pulls self to stand: F
Chest up arms supporting: P
Sit-head steady: F
Rolls over: P (even if only one way!!)
Some of these might sound crazy, but it's all stuff that kids should do by the time they are 10 months old. Honestly, I can look ahead and see what's on the list for 10-12 months and my heart sinks. I know that she is doing so much better, but we are getting further and further behind on the charts and that is very hard for my heart and my pride. I'll be honest, the pride really takes over sometimes. I want my child to excel at something...not be pitied or looked at strangely.
Another subject that I brought up with the neurologist is a diagnosis. I know, the question, "Well, what's wrong with her exactly?" is one that I'm not looking forward to. As she gets closer to 1 year of age I start to really notice the vast difference between her and her friends. So, I asked..."what does Ella HAVE?". The answer is unclear. As of now we can call it Cerebral Palsy, however the doctor is not diagnosing her with that. He says it's way too broad and includes so many things. That is probably the term I would use with strangers bc it's easier than explaining, but he says that his diagnosis is "Developmentally Delayed".
We will see her Developmental Pediatrician on Friday so I will update more next week on where they "plot" her. Ella and I will be traveling to Des Moines for a weekend of festivities with the Michell/Cook families. Please pray as I travel with her alone that I have the strength that only God can provide for this trip.
Tuesday, February 27, 2007
Sunday, February 25, 2007
This Week's Appointments
Monday, 2/26: Eye doctor (check up on the glasses and lazy eye)
Tuesday, 2/27: Neurologist (just a follow-up, might discuss EEG from January)
Tuesday: physical therapy
Wednesday: occupational therapy
Friday, 3/2: Developmental Pediatrician (follow-up on development...they will plot where she falls on the chart)
thank you for your prayers this week...and as I travel alone with Ella next weekend...PLEASE say prayers for the flight to go smoothly!!
Tuesday, 2/27: Neurologist (just a follow-up, might discuss EEG from January)
Tuesday: physical therapy
Wednesday: occupational therapy
Friday, 3/2: Developmental Pediatrician (follow-up on development...they will plot where she falls on the chart)
thank you for your prayers this week...and as I travel alone with Ella next weekend...PLEASE say prayers for the flight to go smoothly!!
Saturday, February 24, 2007
Wednesday, February 21, 2007
New York, New York
My grandad went to NYC last month and got me this cute shirt...don't I look like a big girl??
Cheetos
Here I am trying Cheetos for the first time. My occupational therapist, Peggy, thinks it's a good tool to use in my oral stimulation. I could chomp on them and she could still keep a hold of it...I liked my first taste of junk food!!
Cousins
My cousin Micah is learning to crawl and he thinks I'm a good speedbump...good thing I don't mind so much!!
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