One of the kids in the daycare is a two year old boy. All he thinks about is food. Now I understand that this statement could be percieved as somewhat of an over-exagerration. Generally speaking, most two year olds and especially two year old boys think a lot about food. But I think this guy is different.
Friday, I was in charge of the daycare while Angie and my three girls went to the Evansville Children's choir rehearsal. We encourage the imagination in our daycare, and try to keep toys on hand to spur this on. We have several old phone handles that the kids play with, and they can be regularly seen talking with their "mommy" or "daddy" on the phone. I think this next paragraph proves that all he thinks about is food.
The first time I saw him on the phone, he was talking with his mom and he said, "are you comin' to get me? (slight pause) Are you bringing food?" Now before we go any further, please keep in mind that the child just had an afternoon snack and Angie follows the USD guidelines when preparing meals, so he has had plenty to eat...seconds if he wants. Well, the very next time I saw him on the phone, he was calling McDonalds to order take out. He was asking them to deliver some chicken nuggets and some french fries and some cokes. I am assuming that the imaginary counter person at McDonalds told him that the delivery would be there shortly as he ended the call with the standard "thanks."
Monday, September 29, 2008
Friday, September 26, 2008
Family member profile - Rickelle
Since Rickelle was the focus of an entry a few days ago, I figured that I should introduce you to her.
Rickelle was born with micro-cephaly (small head), and with a condition that I can hardly pronounce yet alone spell, that makes the outside of her brain smooth rather than convoluted like a normal brain. This causes severe mental retardation. Her mother did lots of drugs while pregnant which compounded Rickelle's birth defects. When Rickelle was just a few months old, she was found by her grandmother on the floor, with a head injury, and left for dead. Rickelle's mother was nowhere to be found. They think she layed there for two days. Rickelle came to us through the foster care program.
She is unable to eat anything by mouth, so he gets everything through a g-tube implanted into her stomach. It looks like a spigot sticking right out of her body. She has the mental capacities of a newborn infant. She does not protect her own airway. A couple of years ago, she had a tracheotomy tube installed. This has helped her health tremendously. She requires oxygen full time.
When kids don't eat and use their mouths like normal kids, they don't lose their baby teeth as quickly. Rickelle is 8 years old and still has some baby teeth. The dentist is watching them closely so that we can have them pulled before they fall out and choke her. A couple of years ago, Rickelle was life-flighted to Indianapolis. The medics intibated her and when they did they knocked out four of her upper teeth in the front. Now she has a permanent tooth growing in their place. Yes, a single giant adult sized front tooth, and it is smack dab ion the middle of her mouth. The first thing people think of when they see it is of the cyclops.
Rickelle's ears work, according to the specialists, but she does not hear all of the time. It's like her brain is not interpreting the information correctly all the time. Her right eye did not develop an optical nerve so she sees only with her left eye.
She has a great smile that melts hearts. She has already outlived her life expectancy by four years. We know that she is not going to live much longer...that does not make it any easier though. We will give her the best possible quality of life while she is with us. I will upload some pictures to an online photo album and the post the link.
Rickelle was born with micro-cephaly (small head), and with a condition that I can hardly pronounce yet alone spell, that makes the outside of her brain smooth rather than convoluted like a normal brain. This causes severe mental retardation. Her mother did lots of drugs while pregnant which compounded Rickelle's birth defects. When Rickelle was just a few months old, she was found by her grandmother on the floor, with a head injury, and left for dead. Rickelle's mother was nowhere to be found. They think she layed there for two days. Rickelle came to us through the foster care program.
She is unable to eat anything by mouth, so he gets everything through a g-tube implanted into her stomach. It looks like a spigot sticking right out of her body. She has the mental capacities of a newborn infant. She does not protect her own airway. A couple of years ago, she had a tracheotomy tube installed. This has helped her health tremendously. She requires oxygen full time.
When kids don't eat and use their mouths like normal kids, they don't lose their baby teeth as quickly. Rickelle is 8 years old and still has some baby teeth. The dentist is watching them closely so that we can have them pulled before they fall out and choke her. A couple of years ago, Rickelle was life-flighted to Indianapolis. The medics intibated her and when they did they knocked out four of her upper teeth in the front. Now she has a permanent tooth growing in their place. Yes, a single giant adult sized front tooth, and it is smack dab ion the middle of her mouth. The first thing people think of when they see it is of the cyclops.
Rickelle's ears work, according to the specialists, but she does not hear all of the time. It's like her brain is not interpreting the information correctly all the time. Her right eye did not develop an optical nerve so she sees only with her left eye.
She has a great smile that melts hearts. She has already outlived her life expectancy by four years. We know that she is not going to live much longer...that does not make it any easier though. We will give her the best possible quality of life while she is with us. I will upload some pictures to an online photo album and the post the link.
Thursday, September 25, 2008
What is that smell?
You've heard it said that being able to admit that you have a problem is the first step towards recovery.
Angie had to take the medically fragile kids to Indianapolis to attend the cerebral palsy clinic. So, I had to take off a day of work and watch the other kids. Angie also runs a daycare out of our home so I had to watch those kids too. These kids are all under five and a couple are still in diapers.
After nap and snack time my 14 year old, Alex came home from school. We were all in the family room interacting with the kids, when a cloud of a foul odor permeated the festive atmosphere. The kids didn't seem to pay any attention at all but my eyes were watering. The hunt was on for the one that did the "duty".
The best way to find messy pants is to actually look because kids under two have a false sense of reality and will lie to you. But, being hard-headed and lazy, and from the comfort of my chair, I went around the room asking each child if they were the ones that made the stinky. Of course, one by one, they all said no. Obviously a lie intended to prolong my suffering. It was almost as if one of them told the others "watch this."
One of the kids came near. A very cute and very petite little girl. To even imagine that a stink like that could emanate from such a precious little girl was mind-boggling to begin with, but the closer she came, the more I realized that I had found the perpetrator. I asked her point blank, "did you go poopy?" She shook her head no while looking me right in the eye! I asked her again, "Are you sure? Did you go poopy?" She lowered her head as if caught stealing a cookie from the cookie jar, and then shook hear head yes. The look of final confession was a point of revelation for us all. Admitting you have a problem in the first place is the first step towards recovery. Admitting that you have a poopy diaper is the first step towards getting a clean one. Hopefully she learned her lesson.
Angie had to take the medically fragile kids to Indianapolis to attend the cerebral palsy clinic. So, I had to take off a day of work and watch the other kids. Angie also runs a daycare out of our home so I had to watch those kids too. These kids are all under five and a couple are still in diapers.
After nap and snack time my 14 year old, Alex came home from school. We were all in the family room interacting with the kids, when a cloud of a foul odor permeated the festive atmosphere. The kids didn't seem to pay any attention at all but my eyes were watering. The hunt was on for the one that did the "duty".
The best way to find messy pants is to actually look because kids under two have a false sense of reality and will lie to you. But, being hard-headed and lazy, and from the comfort of my chair, I went around the room asking each child if they were the ones that made the stinky. Of course, one by one, they all said no. Obviously a lie intended to prolong my suffering. It was almost as if one of them told the others "watch this."
One of the kids came near. A very cute and very petite little girl. To even imagine that a stink like that could emanate from such a precious little girl was mind-boggling to begin with, but the closer she came, the more I realized that I had found the perpetrator. I asked her point blank, "did you go poopy?" She shook her head no while looking me right in the eye! I asked her again, "Are you sure? Did you go poopy?" She lowered her head as if caught stealing a cookie from the cookie jar, and then shook hear head yes. The look of final confession was a point of revelation for us all. Admitting you have a problem in the first place is the first step towards recovery. Admitting that you have a poopy diaper is the first step towards getting a clean one. Hopefully she learned her lesson.
Friday, September 19, 2008
Who decides who lives or dies?
Can a simple heating pad be considered a heroic measure?
If we as parents don't look after our medically fragile kids, I can guarantee you that generally speaking, the doctors and hospitals won't! I understand that there are always exceptions but so far here in Indiana this has been 100% true. When we lived in Atlanta, a vast majority of the doctors and nurses at Scottish Rite were constantly advocating for what was best for our kids. But not here. To tell you the truth, it is absolutely pathetic. One of the main reasons we decided to move back home from Atlanta was because Deaconess hospital opened up a new hospital on the east side of town with a partnership with Riley's Children's Hospital. When we called ahead they assured us that they could take care of our kids. They can surely take care of routine things, but for complicated things like what Rickelle is going through now, they are really quick to want to transport her all the way up to Indianapolis! That's four hours away! And from our experience so far, over the last two years, the doctors up there aren't any better.
Come on! Give me a break, are there no real doctors in Evansville that are willing to treat a sick little girl and not pass the buck in exchange for the easy cases? We are still looking.
This week our daughter Rickelle has been in the hospital. She was not breathing well and her heart rate has been low. The emergency room did x-rays and initially diagnosed her with congenital heart failure. Of course they admitted her to try and get the fluid buildup out of her lung cavity. Now the diagnosis has changed from heart failure to "we still don't know." Our pediatrician did not want to put her in ICU but the regular hospital floor did not want her. Evidently they have just hired a bunch of "fresh" nurses and are afraid that Rickelle will be too complicated for them. So right now she is in ICU, but not under the care of the ICU doctor. She in still under the care of our Pediatrician.
Today we are firing our pediatrician because she has refused to communicate with us about Rickelle's care. I am picking up a copy of her records and taking them to yet another pediatrician. Hopefully this one will care. If she does, I'll tell you who she is.
Meanwhile, Rickelle is in the ICU, under the care of a doctor who doesn’t return phone calls, with a heart rate of 40, a body temp of 93 degrees. Last night the nurse was asked why her body temp was still only 93 degrees. She said that they have put warm blankets on her. We keep a heating pad on her most of time at home, but they won't go that far. Her heart rate is low and they said that the doctor is not concerned and has not ordered the nurses to do anything. Her blood pressure is 120 over 80. This sounds really good but Rickelle is not a normal kid and her blood pressure usually runs at 80 over 40. She was in Riley's last spring with heart trouble. The cardiologist ran all kinds of tests and said that her problem is neurological. The neurologist suspected hydrocephaly but refused to measure the pressure. Instead, he called in an ophthalmologist to look at the eye nerve bundles to see if they sow any signs of hydrocephaly. This might work with normal kids but Rickelle has birth defects and suffered a massive head injury after birth. Her optical nerves have never looked normal. So of course, the ophthalmologist said that his test was inconclusive. So why not go ahead and take a pressure reading if for no other reason than to create a benchmark to compare to later in case she continues to have more problems.
Here we are still having problems and no one with stones enough to act. As a matter of fact, last spring the neurologist said that to install a shunt at this point in Rickelles life would be a "heroic measure" and that he did not recommend that it be done. Of course Angie plowed into him and asked him plainly why he is working as a pediatric neurologist for a children's hospital if that is what he really thinks about the care he gives his patients. The nurse patted her on the back and told her that the doctor needed to hear it.
We were told that her tracheotomy would be a heroic measure but it improved her quality of life immeasurably.
Meanwhile, my little girl, who can't even protect her own airway, is lying in a hospital bed, cold, and with a low heart rate and with no doctor willing to step up and get to the bottom of it. Is giving her a heating pad to keep her warm a heroic measure?
Who decides who lives and dies? Why not give Rickelle a shunt if her brain pressure is up and give her a more normal life while she is here? At least as normal as it can be. The last I checked, it was up to the patient and the parents who lives and who dies. If caring for my little girl is a heroic act then you better step up and be a hero!
I can tell you this for sure. If my little girl dies because this hospital or doctor or whoever refuses to give her the care she needs, regardless of their opinion of what a heroic measure is, I am going to be very angry. And the only thing that they understand is money, so I am going to sue the doctor's and the hospital for negligence and wrongful death.
Rickelle still smiles at me when I walk into her field of view. When Rickelle's health fades to the point to where her quality of life is in question, then Angie and I will issue a DNR. Until then she needs a hero.
If we as parents don't look after our medically fragile kids, I can guarantee you that generally speaking, the doctors and hospitals won't! I understand that there are always exceptions but so far here in Indiana this has been 100% true. When we lived in Atlanta, a vast majority of the doctors and nurses at Scottish Rite were constantly advocating for what was best for our kids. But not here. To tell you the truth, it is absolutely pathetic. One of the main reasons we decided to move back home from Atlanta was because Deaconess hospital opened up a new hospital on the east side of town with a partnership with Riley's Children's Hospital. When we called ahead they assured us that they could take care of our kids. They can surely take care of routine things, but for complicated things like what Rickelle is going through now, they are really quick to want to transport her all the way up to Indianapolis! That's four hours away! And from our experience so far, over the last two years, the doctors up there aren't any better.
Come on! Give me a break, are there no real doctors in Evansville that are willing to treat a sick little girl and not pass the buck in exchange for the easy cases? We are still looking.
This week our daughter Rickelle has been in the hospital. She was not breathing well and her heart rate has been low. The emergency room did x-rays and initially diagnosed her with congenital heart failure. Of course they admitted her to try and get the fluid buildup out of her lung cavity. Now the diagnosis has changed from heart failure to "we still don't know." Our pediatrician did not want to put her in ICU but the regular hospital floor did not want her. Evidently they have just hired a bunch of "fresh" nurses and are afraid that Rickelle will be too complicated for them. So right now she is in ICU, but not under the care of the ICU doctor. She in still under the care of our Pediatrician.
Today we are firing our pediatrician because she has refused to communicate with us about Rickelle's care. I am picking up a copy of her records and taking them to yet another pediatrician. Hopefully this one will care. If she does, I'll tell you who she is.
Meanwhile, Rickelle is in the ICU, under the care of a doctor who doesn’t return phone calls, with a heart rate of 40, a body temp of 93 degrees. Last night the nurse was asked why her body temp was still only 93 degrees. She said that they have put warm blankets on her. We keep a heating pad on her most of time at home, but they won't go that far. Her heart rate is low and they said that the doctor is not concerned and has not ordered the nurses to do anything. Her blood pressure is 120 over 80. This sounds really good but Rickelle is not a normal kid and her blood pressure usually runs at 80 over 40. She was in Riley's last spring with heart trouble. The cardiologist ran all kinds of tests and said that her problem is neurological. The neurologist suspected hydrocephaly but refused to measure the pressure. Instead, he called in an ophthalmologist to look at the eye nerve bundles to see if they sow any signs of hydrocephaly. This might work with normal kids but Rickelle has birth defects and suffered a massive head injury after birth. Her optical nerves have never looked normal. So of course, the ophthalmologist said that his test was inconclusive. So why not go ahead and take a pressure reading if for no other reason than to create a benchmark to compare to later in case she continues to have more problems.
Here we are still having problems and no one with stones enough to act. As a matter of fact, last spring the neurologist said that to install a shunt at this point in Rickelles life would be a "heroic measure" and that he did not recommend that it be done. Of course Angie plowed into him and asked him plainly why he is working as a pediatric neurologist for a children's hospital if that is what he really thinks about the care he gives his patients. The nurse patted her on the back and told her that the doctor needed to hear it.
We were told that her tracheotomy would be a heroic measure but it improved her quality of life immeasurably.
Meanwhile, my little girl, who can't even protect her own airway, is lying in a hospital bed, cold, and with a low heart rate and with no doctor willing to step up and get to the bottom of it. Is giving her a heating pad to keep her warm a heroic measure?
Who decides who lives and dies? Why not give Rickelle a shunt if her brain pressure is up and give her a more normal life while she is here? At least as normal as it can be. The last I checked, it was up to the patient and the parents who lives and who dies. If caring for my little girl is a heroic act then you better step up and be a hero!
I can tell you this for sure. If my little girl dies because this hospital or doctor or whoever refuses to give her the care she needs, regardless of their opinion of what a heroic measure is, I am going to be very angry. And the only thing that they understand is money, so I am going to sue the doctor's and the hospital for negligence and wrongful death.
Rickelle still smiles at me when I walk into her field of view. When Rickelle's health fades to the point to where her quality of life is in question, then Angie and I will issue a DNR. Until then she needs a hero.
Wednesday, September 3, 2008
Guitar Hero
There are some Playstation games that inspire a full-on geeking-out by some kids. A friend of our 11 year old brought over to the house “Guitar Hero” to play during her birthday party. Everyone, including myself, fought over who was going to play next…all night long! The problem with this game is that apparently it is very addictive. I have been toying with the idea of purchasing it ever since. The kids have been begging for me to buy it. I wanted to wait until Christmas, but found out that it was on sale so I used this as an excuse to go ahead and get it. (I fully plan on letting the kids play it too!) My wife gave me the go-ahead, so off I went. The great white hunter was on another mission to bring joy to the household. While I was still in the store, my 8 year old son called my cell phone. The conversation went something like this,
“Dad, are you buying Guitar Hero?”
“Yes.”
“Which one are you getting, Guitar Hero One, Two or Three?”
“I’m getting Guitar Hero Three and two guitars!”
This is when he dropped the phone, screaming and totally geeking out over the idea of me buying this game. He called twice more before I could get home. As I was driving down the street, I noticed the figure of a child standing in the back of my pickup truck. Can you picture the hero of a movie standing on the bow of a ship, holding on to some ropes with one hand, and shielding the sunshine with his other hand, scanning the distance for a long lost love? When he realized it was me driving down the road, he jumped out of the truck, and bounced over to the driveway, eagerly awaiting the arrival of Guitar Hero.
This was last weekend, a three day weekend, and guess how much fighting and arguing went on over who got to play next. Anyway, I have been the kids’ hero ever since, although as far as being a “Guitar Hero” myself, it appears that I am severely lacking the eye-hand coordination to be truly great.
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