Showing posts with label children. Show all posts
Showing posts with label children. Show all posts
Tuesday, February 16, 2016
Thursday, September 25, 2014
What's in an introduction?
Hi, My name is Mattisa. This is my daughter, Kerstin. How much more do you just willingly give when you first meet a person or a group? When you meet new people do you tell them your name, your medical diagnoses? Not many of us do! Then why do some feel the need to just volunteer information on their child with special needs? "Hi, I'm "Sue", this is my son, "John", he has Cerebral Palsy, he can't walk, or talk, etc..." Would you tell another person things about your "typical" or so called "normal" child, especially when it's personal and medical?
I've sat in meetings and conferences and other gatherings when parents have introduced their children and they have pretty much told all in the matter of seconds. I can't help but think and wonder, would the child want you to do that? It's doubtful, especially if they are preteens or teens! I can't help but think that the child(ren) would be like "Really, mom, you're giving all of my personal information out!"
What's in an introduction? A greeting? Your name? Your age? Your medical history? These things are appropriate in the right settings. Medical history, I feel should only be given when you're meeting new doctors with/for your child. Think about your child, as the person first...would you really tell all at the first meet?
Yes, this blog is dedicated to Kerstin and our journey! Yes, I've included medical things here about her and I've done so without giving too many intimate details. Cerebral Palsy is an umbrella with many details underneath and so is Epilepsy, there are many types of seizures.
Monday, September 8, 2014
Parental Involvement
In schools today, what do you think one of the things some school officials would say is missing? Parental Involvement! Why do you think that is the case? It is almost guaranteed that you will hear similar reasons no matter what school or community. Reasons like, "We just can't get our parents out to support the children" "Our parents aren't interested in things like this" and many other reasons. Parents even give reason for their lack of involvement. "I have to work" "The teachers (other school officials) don't listen", and so many other reasons.
What about the parents that are committed? The parents that are willing to help whenever and however they are needed? Some are often overlooked, viewed as an outcast or trouble maker. That has been my personal experience!
Speaking of my experience(s). Time and time again and day after day, when Kerstin has been well and able to go to school, I have and will continue to be at her side. Yet, somehow, when this mom brings up accessibility, special education, ideas or suggestions, I am considered an enemy!
After all, shouldn't advocacy and parental involvement go hand in hand? When there is parental involvement, the parent(S) are not only involved, they also advocate for their child and others. They want what is best for the child's education. They want to make certain that the child is in an environment that is conducive to learning. They want to ensure that the educators are qualified and knowledgeable.
Schools/officials should want parents to know what is going on in the schools as well as with the board/district, right? Maybe not! With this parental involvement, parents should be able to voice their opinions, not just hold classes, make copies and sign in to meetings so that the schools look better. Parents be engaged! Be involved. When parental involvement is sought, be supportive of what you get and build a relationship!
What about the parents that are committed? The parents that are willing to help whenever and however they are needed? Some are often overlooked, viewed as an outcast or trouble maker. That has been my personal experience!
Speaking of my experience(s). Time and time again and day after day, when Kerstin has been well and able to go to school, I have and will continue to be at her side. Yet, somehow, when this mom brings up accessibility, special education, ideas or suggestions, I am considered an enemy!
After all, shouldn't advocacy and parental involvement go hand in hand? When there is parental involvement, the parent(S) are not only involved, they also advocate for their child and others. They want what is best for the child's education. They want to make certain that the child is in an environment that is conducive to learning. They want to ensure that the educators are qualified and knowledgeable.
Schools/officials should want parents to know what is going on in the schools as well as with the board/district, right? Maybe not! With this parental involvement, parents should be able to voice their opinions, not just hold classes, make copies and sign in to meetings so that the schools look better. Parents be engaged! Be involved. When parental involvement is sought, be supportive of what you get and build a relationship!
Parental involvement=Advocacy!
Tuesday, May 13, 2014
Changes...again!
It is rare that Kerstin has a visit to Children's of Alabama without something changing. Change is good, right? I skeptically say "Yes", when things seem to be going in a good direction. So, we were back, for another follow up, our second trip in less than a month. Cannot forget that she has another...in less than a month.
This was a follow up with her pediatric surgeon...g-tube follow up. Beautiful day, beautiful weather (a bit warm, already). I must say, that I am very thankful for safe travels to and from. I told my sister on the way up yesterday, that it seems almost scary that I can drive those 124 miles one way and it seems like nothing now that it's been done so many times. The things we do for our little ones.
Happy to report that Kerstin is continuing to gain weight. In fact, she has gained so much that we had to see the nutritionist again to make more changes to her feeding plan and schedule.
Her current weight is 72.38 lbs!!! March 28, 2013 before her g-tube surgery, she was only 34 lbs! I have previously vowed to myself, that Kerstin was NOT getting a feeding tube! I had heard so many stories from other parents along the way, stories I won't even share.
At her appointment yesterday, I realized that this surgery has saved my daughter's life. I can't remember the speech therapists name that assisted with her swallow study March 25, 2013, but I'm thankful she called me and calmly talked me into coming back inside the hospital to have her admitted!
I was so scared and couldn't see for the tears that filled my eyes but, I'm glad we turned around! I know her doctor, we see him every six months. Dr. Martin was so patient and so calm with this antsy, nervous and confused mom, that he asked if I had questions and actually stood there while I rambled through questions. I was assured that we would not leave the hospital before I had information and training. That training came in the form of pop-ups on the room TV and one on one with his nurse.
Kerstin has gained so that her feeding tube was getting too small so she had to have a larger one. She went from 14 Fr/1.2 cm to a 14 Fr/1.5 cm tube. No, I have not changed a tube yet, it still seems a bit odd and uncomfortable to me to see that little "unnatural" hole in her little belly! But again, I'm thankful that I have sister that is happy to put her nursing skills to work and change them for me.
Now, to the feedings, her overnight feeds have gone down from 300 mL over 10 hours to 192 mL over 8 hours. Her water intake is gone up from 60 mL per bolus to 120 mL. Her nutritionist suggested the new schedule/ rate change since she has gained weight, and needs to maintain where she is for a while. She mentioned that it is somewhat unnatural to eat while you're asleep and that is when your weight is gained. I think she will eventually work up to not needing the pump at all overnight. Fingers crossed! So, for now, she will have a very wacky schedule for a while. One that I will have to get very used to. As with everything we're gone through and had to endure, we always conform.
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*Products received for free from Influenster, so that I could try and review them.*
This was a follow up with her pediatric surgeon...g-tube follow up. Beautiful day, beautiful weather (a bit warm, already). I must say, that I am very thankful for safe travels to and from. I told my sister on the way up yesterday, that it seems almost scary that I can drive those 124 miles one way and it seems like nothing now that it's been done so many times. The things we do for our little ones.
Happy to report that Kerstin is continuing to gain weight. In fact, she has gained so much that we had to see the nutritionist again to make more changes to her feeding plan and schedule.
Her current weight is 72.38 lbs!!! March 28, 2013 before her g-tube surgery, she was only 34 lbs! I have previously vowed to myself, that Kerstin was NOT getting a feeding tube! I had heard so many stories from other parents along the way, stories I won't even share.
At her appointment yesterday, I realized that this surgery has saved my daughter's life. I can't remember the speech therapists name that assisted with her swallow study March 25, 2013, but I'm thankful she called me and calmly talked me into coming back inside the hospital to have her admitted!
I was so scared and couldn't see for the tears that filled my eyes but, I'm glad we turned around! I know her doctor, we see him every six months. Dr. Martin was so patient and so calm with this antsy, nervous and confused mom, that he asked if I had questions and actually stood there while I rambled through questions. I was assured that we would not leave the hospital before I had information and training. That training came in the form of pop-ups on the room TV and one on one with his nurse.
Kerstin has gained so that her feeding tube was getting too small so she had to have a larger one. She went from 14 Fr/1.2 cm to a 14 Fr/1.5 cm tube. No, I have not changed a tube yet, it still seems a bit odd and uncomfortable to me to see that little "unnatural" hole in her little belly! But again, I'm thankful that I have sister that is happy to put her nursing skills to work and change them for me.
Now, to the feedings, her overnight feeds have gone down from 300 mL over 10 hours to 192 mL over 8 hours. Her water intake is gone up from 60 mL per bolus to 120 mL. Her nutritionist suggested the new schedule/ rate change since she has gained weight, and needs to maintain where she is for a while. She mentioned that it is somewhat unnatural to eat while you're asleep and that is when your weight is gained. I think she will eventually work up to not needing the pump at all overnight. Fingers crossed! So, for now, she will have a very wacky schedule for a while. One that I will have to get very used to. As with everything we're gone through and had to endure, we always conform.
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| Received some great products in the #UnivoxBox |
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| One of those products used to write a note to my HERO! #PenItFFwd |
*Products received for free from Influenster, so that I could try and review them.*
More to come...
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