Sunday, June 19, 2011
Still here
Oli is still in the hospital. He has been pretty happy of course not having any "episodes." We will see hopefully soon when the doc comes if there was anything over night. Adina decided last night that Oli should come home now. He holds a very special place in both sisters hearts. We are all so used to hanging out by Oli that we all feel like our universe a bit off. Even Cora will crawl to his room and look for him. Hope to be home soon. Happy Fathers Day! More to come, soon hopefully!
Friday, June 17, 2011
Bump
Oliver is in the hospital hopefully only for a short stay. He has been having seizures all week. Hopefully we can just do a quick med fix or figure out what is causing the seizures and boogie out. He had been miserable all day and then of course when we get into the car he starts to smile. Little stinker! Hopefully they will see something on the EEG. We will keep you posted. Oliver was pulling off the EEG leads after they would place them on. He is so funny. Anybody that thinks Oliver is not a typical three year old, I promise he is. He knows just what he is doing! The poor technician just wanted to get out of there and Oliver was really giving her a rough time. She came back on a Friday night just to get him hooked up. Pray that Oli has a seizure so they can see what the snot is going on! Then pray that they stop right after. I know, I am really getting picky about my prayer requests!
Tuesday, June 7, 2011
Summer is Here!
Adina reading Cora a book. Cora is happiest when her big sister and big brother are around. When Oli moves his hands towards Cora she gives him a big squeal back!
Coras first time at the lake. She wasn't sure the first time, now she will crawl right into the water.
Coraline got to meet her Great-Uncles on Memorial Day when they came for a visit from CA. Uncle Jim is holding Coraline and Jim's partner Don is behind. It was a fun day with the Uncles! Adina was hoping they would stay for a sleep over.
Life has been good in the Klawiter house. Coraline is becoming a fiesty one year old. She will soon learn the the tantrums won't get her far in this house! Adina had a quick surgery today to take the tubes out of her ears. They are supposed to fall out on their own but of course Adina's stayed in. Adina was not too thrilled and they had to drag her back. Besides barfing projectile style on the way home twice I would say the morning was a success! The temp was 102 here today, that is just too darn hot for this Minnesota family. We hid out all day in the air conditioned house. We have two fans pointed on Oli because he gets so hot so fast. He has been having an awesome few weeks. We have a few bumps here and there but who doesn't! We are going to Gillette in a few days to get sized up for a new wheel chair. I am so excited because we never thought we would be able to go to the appointment. This gets confusing for some people because he is hospice but we have decided that we are going to plan for the future and just go on with life. Oli does not have a comfortable place to sit with good support because his last chair no longer meets his needs. When people hear hospice, they assume that means the end is close. That is the case with adults, usually it is six months or less. With kids there is no timeline because kids are so darn resiliant and take a more up and down and all over the place direction. There is no timeline at all. Right now because Oli is doing so well hospice only comes a couple times a week for a check in. They are always a phone call away for those times where we need them and they are a good resource for what we should do and what we can skip. We continue to get so much great support from everybody! We love all of the kind words and support and it gets us through a lot! The church John is doing his internship at amazes me everyday. They love Oli so much and have helped our family so much in so many ways. Words cannot express how much love they all share.
We know that we have a different lifestyle. We can't be spontaneous and take a quick road trip. We don't even venture out an hour away all together because we are not going to leave Oli, he is our family. John or myself are always close by. We are never sad about this, life is life. We are still enjoying life and we are happy. We hope that everybody understands that we do not feel like Oli is a burden to us or that we feel he would be better off if he passed. If you have heard that from somebody it is not true! We are not keeping him alive with the ventilator, he does most of the breathing on his own. We are however helping him with comfort. If you are having any of these feelings that is fine, but don't tell them to us. They are actually very hurtful. Oliver is our beautiful, happy, loving, son. Oliver's doctors at Gillette help us when we need it with the big decisions, we are covered in the advice department. Everybody else only needs to focus on the non-medical stuff for now and look past the tubes. If you can't do that you are seriously missing out.
This is what you get if you can see past the tubes. One happy, perfect, smiling Oliver!!
This picture was just taken tonight. What a stud!
Coras first time at the lake. She wasn't sure the first time, now she will crawl right into the water.
Coraline got to meet her Great-Uncles on Memorial Day when they came for a visit from CA. Uncle Jim is holding Coraline and Jim's partner Don is behind. It was a fun day with the Uncles! Adina was hoping they would stay for a sleep over.
Life has been good in the Klawiter house. Coraline is becoming a fiesty one year old. She will soon learn the the tantrums won't get her far in this house! Adina had a quick surgery today to take the tubes out of her ears. They are supposed to fall out on their own but of course Adina's stayed in. Adina was not too thrilled and they had to drag her back. Besides barfing projectile style on the way home twice I would say the morning was a success! The temp was 102 here today, that is just too darn hot for this Minnesota family. We hid out all day in the air conditioned house. We have two fans pointed on Oli because he gets so hot so fast. He has been having an awesome few weeks. We have a few bumps here and there but who doesn't! We are going to Gillette in a few days to get sized up for a new wheel chair. I am so excited because we never thought we would be able to go to the appointment. This gets confusing for some people because he is hospice but we have decided that we are going to plan for the future and just go on with life. Oli does not have a comfortable place to sit with good support because his last chair no longer meets his needs. When people hear hospice, they assume that means the end is close. That is the case with adults, usually it is six months or less. With kids there is no timeline because kids are so darn resiliant and take a more up and down and all over the place direction. There is no timeline at all. Right now because Oli is doing so well hospice only comes a couple times a week for a check in. They are always a phone call away for those times where we need them and they are a good resource for what we should do and what we can skip. We continue to get so much great support from everybody! We love all of the kind words and support and it gets us through a lot! The church John is doing his internship at amazes me everyday. They love Oli so much and have helped our family so much in so many ways. Words cannot express how much love they all share.
We know that we have a different lifestyle. We can't be spontaneous and take a quick road trip. We don't even venture out an hour away all together because we are not going to leave Oli, he is our family. John or myself are always close by. We are never sad about this, life is life. We are still enjoying life and we are happy. We hope that everybody understands that we do not feel like Oli is a burden to us or that we feel he would be better off if he passed. If you have heard that from somebody it is not true! We are not keeping him alive with the ventilator, he does most of the breathing on his own. We are however helping him with comfort. If you are having any of these feelings that is fine, but don't tell them to us. They are actually very hurtful. Oliver is our beautiful, happy, loving, son. Oliver's doctors at Gillette help us when we need it with the big decisions, we are covered in the advice department. Everybody else only needs to focus on the non-medical stuff for now and look past the tubes. If you can't do that you are seriously missing out.
This is what you get if you can see past the tubes. One happy, perfect, smiling Oliver!!
This picture was just taken tonight. What a stud!
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