When we went through the transplant with Elijah, we could only be 30 minutes from the hospital. Now, apparently, we must need to have a gas station nearby (as the kids would say, JK.) They have prescribed ethanol treatment to kill the germs that stick on the walls of the central line. Elijah has a septic infection again and continues to have sinus issues. Mark just called to say they were starting this new treatment tonight along with the antibiotics they started upon admission..
I have lots of questions...I will let you know if I get answers...
Added 2/12 (Sounds like ethanol locks are not as scary or unusual as they sound...something that has been used to try and kill germs in central lines for a long time...I can breath a little easier now!)
Saturday, February 11, 2012
Some days...with FASD
Some days the insanity of a house full of FASD kids seems nearly too much to handle. This whole week has been a really rough one for all of the kids..and then add the stress of a sick brother in the hospital and Dad gone with him, I can't decide whether to scream, laugh or just cry...
I am amazed that our house is still standing. With the sleep disorders in a full rage, I wake up to a house torn apart..no matter how clean and picked up it was when we went to bed. Several of the kids roam all night long..one eats all night, the other eats and tears the house apart. We just purchased three lock boxes to store knives, car keys, meds, electronics, and keys to more lock boxes..even though the lock boxes were sturdy...each and every one of them is broken in an attempt to get at the contents.
Just one morning of casualties include the hose to the vacuum cut with scissors, potholders burnt in an attempt to hold a meat thermometer over the flame of a gas stove, a whole loaf of bread made into peanut butter and jelly sandwiches, 2 quarts of juice drank, 2 cell phones disappeared, cupboard doors falling off, cupboard drawers emptied, dishes everywhere, 3 cans of soup opened and poured into bowls (uneaten), several bowls of cereal and milk uneaten and poured out into the garbage. Not to mention the unidentified liquid all over the floor which could very well be urine (sorry..tmi?) And that is just the kitchen. All of this took place in the 4-5 hours of sleep we get a night.
And so, after only a few hours of sleep, it is not easy to face such a disaster in the morning. And then there is the task of getting FASD'ers out the door in the morning for school. Our kids have so many tardies and missing days of school, that I am waiting for the truancy officers to knock on our door. Our mornings start out like this and our evenings end in a raging 7 year old who is getting increasingly violent and explosive. And in the middle of the days, we must deal with school personnel, doctors and therapists in between dealing with the behavior of the littlest FAS'er in our obsessing about princesses all day long.
All the damage to our home is getting so expensive. The extra food and groceries that are wasted EVERY day makes me overwhelmed. I see dollar signs every morning when I survey the damage.
And then I wonder if any one on the outside really "gets" the cost of this lifestyle. It's costly in many ways.
What makes this all so complex is the sheer numbers of abnormal thinkers in one home. Each of them who have sustained inutero brain damage have their own unique quirks, deficits and abilities...and often times there thinking makes no logical sense. Listening to a conversation between two of our kids with FASD is maddening...it is the interactions between them that compounds the insanity at times around our house. Today, I have had enough. I am not at the hospital...we are still awaiting culture results for Elijah. I wish I could be with my little guy with autism who seems quite "normal" compared to the whole bunch at home.
FASD is really hard at times. I love each one with a passion and I go to bat for them on a daily basis. They are disabled..not lazy, not uncooperative, not trying to drive anyone crazy. They are disabled. It must be maddening to be them. And I can step away at times... They can't. That's tough. I wish life would not have to be such a struggle all the time for them. I wish there was a medication, a nutritional supplement, a cure for the brain damage...but it's permanent. And sometimes, the permanency of their situation is hard to face. This isn't a week I have been allowed to shade myself from the glaring reminder that they are not going to grow out of this...they aren't "normal" and they never will be.
This life is so hard...I can't handle it..but God can. And I will pick myself up, dust myself off and face tomorrow with just enough strength and grace extended to me from God for each day. He sees the end of this story...and He sees the beauty in the midst of these ashes. I will trust that He has gone before me and this is all for His glory. I will trust with just enough faith for today...
I am amazed that our house is still standing. With the sleep disorders in a full rage, I wake up to a house torn apart..no matter how clean and picked up it was when we went to bed. Several of the kids roam all night long..one eats all night, the other eats and tears the house apart. We just purchased three lock boxes to store knives, car keys, meds, electronics, and keys to more lock boxes..even though the lock boxes were sturdy...each and every one of them is broken in an attempt to get at the contents.
Just one morning of casualties include the hose to the vacuum cut with scissors, potholders burnt in an attempt to hold a meat thermometer over the flame of a gas stove, a whole loaf of bread made into peanut butter and jelly sandwiches, 2 quarts of juice drank, 2 cell phones disappeared, cupboard doors falling off, cupboard drawers emptied, dishes everywhere, 3 cans of soup opened and poured into bowls (uneaten), several bowls of cereal and milk uneaten and poured out into the garbage. Not to mention the unidentified liquid all over the floor which could very well be urine (sorry..tmi?) And that is just the kitchen. All of this took place in the 4-5 hours of sleep we get a night.
And so, after only a few hours of sleep, it is not easy to face such a disaster in the morning. And then there is the task of getting FASD'ers out the door in the morning for school. Our kids have so many tardies and missing days of school, that I am waiting for the truancy officers to knock on our door. Our mornings start out like this and our evenings end in a raging 7 year old who is getting increasingly violent and explosive. And in the middle of the days, we must deal with school personnel, doctors and therapists in between dealing with the behavior of the littlest FAS'er in our obsessing about princesses all day long.
All the damage to our home is getting so expensive. The extra food and groceries that are wasted EVERY day makes me overwhelmed. I see dollar signs every morning when I survey the damage.
And then I wonder if any one on the outside really "gets" the cost of this lifestyle. It's costly in many ways.
What makes this all so complex is the sheer numbers of abnormal thinkers in one home. Each of them who have sustained inutero brain damage have their own unique quirks, deficits and abilities...and often times there thinking makes no logical sense. Listening to a conversation between two of our kids with FASD is maddening...it is the interactions between them that compounds the insanity at times around our house. Today, I have had enough. I am not at the hospital...we are still awaiting culture results for Elijah. I wish I could be with my little guy with autism who seems quite "normal" compared to the whole bunch at home.
FASD is really hard at times. I love each one with a passion and I go to bat for them on a daily basis. They are disabled..not lazy, not uncooperative, not trying to drive anyone crazy. They are disabled. It must be maddening to be them. And I can step away at times... They can't. That's tough. I wish life would not have to be such a struggle all the time for them. I wish there was a medication, a nutritional supplement, a cure for the brain damage...but it's permanent. And sometimes, the permanency of their situation is hard to face. This isn't a week I have been allowed to shade myself from the glaring reminder that they are not going to grow out of this...they aren't "normal" and they never will be.
This life is so hard...I can't handle it..but God can. And I will pick myself up, dust myself off and face tomorrow with just enough strength and grace extended to me from God for each day. He sees the end of this story...and He sees the beauty in the midst of these ashes. I will trust that He has gone before me and this is all for His glory. I will trust with just enough faith for today...
