Now that I'm pissed off and on a roll. I am also going to start the process of finding a congress person to help sponsor a bill to make it a criminal offense for a mother to expose their child to drugs and alcohol to the extent that it causes mental and physical damage. Christopher is 10 years old, cannot talk, does not chew food, wears diapers and can only walk with a walker. He may never get any more developed than he is right now.
All because his mother drank while pregnant. She should have to do prison time for doing this to another human being. If that same woman was to drink and drive, and run over a kid which in turn caused that child brain damage, she would have criminal charges then right? Why not while the child is in the womb?
I wonder if the right to life people would like to help with this?
Thursday, October 9, 2008
More sad days for Deaconess Gateway Hospital
When you see the name Riley's on the side of a hospital what do you think of? You think that that particular hospital is directly connected with Riley's right? Not in the case of Deaconess Gateway. There is a monthly clinic where real children's hospital doctors come for a day. But everything done in the clinic is totally separate from Gateway. Our intensivist in the PICU at Deaconess Gateway has no idea what has gone on with our kids even at the clinic...no diagnosis', no orders, no nutrition plans, nothing. He is flying blind. The only thing they have to go on is the information that my wife provides them, which is very good info by the way. Unfortunately, doctors dismiss any information from parents because the parents tend to be medically trained by the world wide internet and therefore have nothing relevant to say. Angie knows Rickelle better than her team of doctors because we have the big picture.
Solution: We are going to do two things. We are going to keep medical summaries on all of our kids and carry it from doctor to doctor. This really sucks but we see this as the only way to get the level of care we need. Secondly, we are going to start advocating for a statewide (even national) electronic storage of medical records so that the patient owns the records and not the doctors. This way all of the records can be accessed by whatever doctor is being consulted. This will create a harmony of medical care not yet seen.
Solution: We are going to do two things. We are going to keep medical summaries on all of our kids and carry it from doctor to doctor. This really sucks but we see this as the only way to get the level of care we need. Secondly, we are going to start advocating for a statewide (even national) electronic storage of medical records so that the patient owns the records and not the doctors. This way all of the records can be accessed by whatever doctor is being consulted. This will create a harmony of medical care not yet seen.
I've been away - Rickelle is in ICU
Rickelle is in ICU again so we have been tremendously busy with everything so I have had no time to post. Her CO2 levels were dangerously high when we went to the emergency room last week. Of course we did not know that until we got there. We went in because her blood oxygen levels were a little low and her heart rate was high. The emergency room doctor was going to let her go home! (I'd like to have his license.) We finally complained enough that they brought down the intensivist and he admitted Rickelle for respiratory failure. She's been on a ventilator ever since.
She is doing just fine. She breaths a few breaths very shallow and then takes a regular breath. The doctor does not like this and even though she is breathing on her own over the machine, and her stats are perfect, they are still wanting to send her home on the ventilator. I'll save the excitement of all this for another post.
Rickelle is ready to come home except for getting the ventilator equipment and training done.
She is doing just fine. She breaths a few breaths very shallow and then takes a regular breath. The doctor does not like this and even though she is breathing on her own over the machine, and her stats are perfect, they are still wanting to send her home on the ventilator. I'll save the excitement of all this for another post.
Rickelle is ready to come home except for getting the ventilator equipment and training done.
Thursday, October 2, 2008
The fart harp
I have created a monster.
I heard from a 'friend' that you can take a straw and tuck it under your armpit and blow into it and create a great time for everyone. As we were ending dinner, I decided to test this to see if it would work.
I had my son Adam get a straw and try it. Obivously while Adam was looking for a straw, this idea caused some conversation and speculation amongst the family members as to whether this would really work or not. The more we talked about it, the more excited Adam got. He gets very excited over the idea of creating bodily type noises, especially artificially which can then be created at will...unlike natural farts.
After a few minutes Adam found a bendy straw, which is the best type for a fart harp. The moment of truth had come. He ripped off his shirt, tucked the straw under his arm and gave it a good blow. The cacophany that ensued was so funny, even Angie was rolling on the ground. For Angie to laugh at a sound that is normally produced by bodily functions is a rarity in and of itself. We were laughing non-stop for a good ten minutes. Personally, I almost peed my pants. When Adam started complaining that his arm pits were starting to tingle, probably from the skin flapping against itself at varrying frequencies, we move on to the other kids.
Chris is our fetal alcohol kid. He doesn't speak but he laughs and laughs. He is the family's biggest fan of the fart game. He is the master. (He has made my eyes water before.) We tucked the straw under his arm and played the fart harp. The initial look on his face was priceless. He screemed with glee at the newly found noise.
If you would like to try the fart harp yourself, be sure and have the video camara handy first. Then go and find a bendy straw. A straight straw will work if you have some help in blowing into it. Give it a try and let me know how it goes!
Please help out our family and click on one of the advertisers on the page.
Thanks.
I heard from a 'friend' that you can take a straw and tuck it under your armpit and blow into it and create a great time for everyone. As we were ending dinner, I decided to test this to see if it would work.
I had my son Adam get a straw and try it. Obivously while Adam was looking for a straw, this idea caused some conversation and speculation amongst the family members as to whether this would really work or not. The more we talked about it, the more excited Adam got. He gets very excited over the idea of creating bodily type noises, especially artificially which can then be created at will...unlike natural farts.
After a few minutes Adam found a bendy straw, which is the best type for a fart harp. The moment of truth had come. He ripped off his shirt, tucked the straw under his arm and gave it a good blow. The cacophany that ensued was so funny, even Angie was rolling on the ground. For Angie to laugh at a sound that is normally produced by bodily functions is a rarity in and of itself. We were laughing non-stop for a good ten minutes. Personally, I almost peed my pants. When Adam started complaining that his arm pits were starting to tingle, probably from the skin flapping against itself at varrying frequencies, we move on to the other kids.
Chris is our fetal alcohol kid. He doesn't speak but he laughs and laughs. He is the family's biggest fan of the fart game. He is the master. (He has made my eyes water before.) We tucked the straw under his arm and played the fart harp. The initial look on his face was priceless. He screemed with glee at the newly found noise.
If you would like to try the fart harp yourself, be sure and have the video camara handy first. Then go and find a bendy straw. A straight straw will work if you have some help in blowing into it. Give it a try and let me know how it goes!
Please help out our family and click on one of the advertisers on the page.
Thanks.
Monday, September 29, 2008
Does McDonalds deliver?
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."
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."
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.
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