John left for Australia today, has not been gone even 12 hours and we are all missing him more than words can say. I know, it has only been a few hours, but we are a darn good team! He will be away for 10 days, but I am super excited for him! Here is the website of what John will be experiencing if anybody is interested. http://www.parliamentofreligions.org/
Adina kept running to the door tonight saying, "Is daddy monster coming?" She calls him this when they play hide and seek. It will be a long 10 days for us all!
Before John left we went to Children's and had our blood drawn. Myself, John, and Oliver. John and I are being tested to see if we have the same variations on our genes that Oliver had. I know genetics are confusing. I will try to explain it how they did today. If John and I have the same differences as Oliver, they will not be concerned because John and I are healthy, so it is just a random change but not really indicative of anything. If only Oliver has this change however, it could help us greatly to better diagnose Oliver. It is not that we are hoping for this, because what they are looking for is not the best, but it would be nice to really have a better understanding of what is going on. Oliver had a blood and urine test today to check for a bunch of things. When they were putting the little urine bag on Oliver, Adina said to the nurse, "Hey doctor lady, I sure hope your not gonna give Oliber a shot down there. You're not, are ya?"
Adina came with us to help us all stay brave with our blood draws! We were told we would get the results in about 2-3 weeks. To translate that doctor talk for ya, it will most likely be 4-6 weeks or more. We just come to expect the extra long wait time and anything faster is a special little gift =) Hope you all had a great Thanksgiving and are now in turkey detox! Night everybody. John, if you read this, WE MISS AND LOVE YOU SOOOO MUCH!!! Have a blast and get some much much needed and deserved relaxation!
Monday, November 30, 2009
Tuesday, November 24, 2009
Long Day
Today was a big day for Oliver. We have been trying to get into the U of M eye/genetic docs. They were booked almost a year out the last I called. We got a call last week because they had a cancellation and could fit Oliver in! They only meet once a month so you work around them. Oliver was a rock star. He was totally showing off his skills. The last time we went, they did not think he could really see anything. Today Oliver was looking at the vision cards, with fingers in his mouth, reclined against me, totally looking at them all. She was moving them all around and he was like, "Really, when are you going to make this a challenge!" I was so proud of that little guy. Of course as soon as they touched his face he let them have it, BIG time. Three of us had to hold him down, he is tough! He is near-sighted and his astigmatism has gotten worse. But she felt that his residual vision has, for Oliver, greatly improved! YES!!! So proud of him!! No glasses yet but perhaps in the future. Won't he look so intelligent! She said she wants to remain optimistic that it will continue to improve, but.. I finished the sentence. We need to be realists here. Doctors. So predictable. It is true though, with Oliver we don't know when the vision will just stop developing. We are still gonna celebrate this!! We will be testing his hearing at Children's. We know he can hear and is very sensitive to sound, but he does not always track sound from certain directions.
Next we met with the geneticist. Was not expecting anything, unfortunately we got something anyway. Some of the genetic testing returned from the University of Chicago, some are still pending. One test so far came back with differences where there should be none. It is a gene that detects Lissencephaly(abnormality in wrinkles of the brain). Google explains better. There are many types and varying levels of severity, but we really don't want anything to do with this, life expectancy can be very low. We are not worrying too much, yet. More testing to come I am sure. John and I will get another genetic test to see if we share any of these, and Oliver will have more blood work. These results were a little shocking. We were under the impression that they would most likely be negative. Such is life.
So, good news and potentially bad. We are at least thankful for the good and are not going to worry until we know more.
We are on a new seizure med and so far so good. We started at half a tablet once a day and will be increasing that slowly to two tablets a day over 8 weeks. Hopefully this is the med. Oli has been happy again, life is good.
Happy Thanksgiving! There is so much to be Thankful for, for example, all of you!!
Next we met with the geneticist. Was not expecting anything, unfortunately we got something anyway. Some of the genetic testing returned from the University of Chicago, some are still pending. One test so far came back with differences where there should be none. It is a gene that detects Lissencephaly(abnormality in wrinkles of the brain). Google explains better. There are many types and varying levels of severity, but we really don't want anything to do with this, life expectancy can be very low. We are not worrying too much, yet. More testing to come I am sure. John and I will get another genetic test to see if we share any of these, and Oliver will have more blood work. These results were a little shocking. We were under the impression that they would most likely be negative. Such is life.
So, good news and potentially bad. We are at least thankful for the good and are not going to worry until we know more.
We are on a new seizure med and so far so good. We started at half a tablet once a day and will be increasing that slowly to two tablets a day over 8 weeks. Hopefully this is the med. Oli has been happy again, life is good.
Happy Thanksgiving! There is so much to be Thankful for, for example, all of you!!
Sunday, November 1, 2009
October
We had a visit from Grandpa and Grandma Klawiter in October! They made their way all the way from warm California to cold Minnesota with a few stops in between. We always look forward to seeing Grandpa and Grandma and wish the drive was a bit shorter! Here is a picture of the four generations. Of course Adina is smiling nice for the picture.
The next three pictures are of Oliver working hard in therapy. The picture of him sitting alone was the first and only time he has done that. It was a quick one, two, three, quick take the pic! Small, tiny step, huge achievement. Yay Oli! He is one hard worker!
Adina blowing the candles out on her first cake. We had a little family party and a bigger party later. Happy Birthday Adina!
Godmommy Martha and Mr. Oliver enjoying the lovin!
Opening presents with a little help from the boys.
Adina and Oliver on Halloween. Adina is Tinkerbell and Oliver is a boy in a tu-tu. Adina thought he needed something on! The joy of having an older sister pick out your clothes!
Adina put her costume on and said, "Now I can fly!" Oh boy, not again. We had to have a talk that her wings were only pretend!
Adina and a new friend.
Tinkerbell had to be winterized for a night out in Minnesota.
Mr. Monkey (and his dad), Pumkin Man, Batman, and Tinkerbell.
Cuties on the couch. Never easy to get this many kids to look and smile. They had one thing on the brain. CANDY!
Adina and cousin Kali Rose who was a butterfly.
It was a fun and busy October that flew by. I wish I could say it went without any low spots but this was just our month and now it is time to make November great! After Oliver was in the hospital we temporarily thought his seizures were under control. He soon started to have them again. He seems to be changing a bit in the way he displays them, or adding on different types. We raised the meds again, did okay, and then one night Oliver woke up with the highest scream I have ever heard. I ran in just in time to catch a seizure and one more after (both less than 3 minutes). He became increasingly irritable, we could not do anything to calm him. So we just rocked him while he screamed. Now came the hard part. Oliver of course can't tell us what hurts so the neurologist was not sure if he was having more seizures or irritable from the Keppra. Some kids just don't react well to this med, the only way to know was to increase the dose again. If he became more angry, the problem was the med. Seems easy. We had three days of pure Hell to be honest. It was the medication, Oliver screamed for almost 24 hours straight, only sleeping for about 2 hours one night. I was so frustrated, not at Oliver, but with myself because I could not figure it out or help him. Friday we lowered his dose to stop the reaction and tomorrow (Monday), we will be in touch with the Neurologist to determine the new medication. Whew! This whole seizure business has been a huge learning experience and just when we think we have it figured out it changes.
We are appealing the rejected nursing care again. Now that his Epilepsy is somewhat out of control it should help our case. We have learned that getting help for the disabled comes with many hoops to jump through and a whole lot of needed patience. It is this way for every parent trying to get services for their child, not just us. So, we just take a breath, a big one! We will keep you posted. I know this was the mother of posts! A lot happened this month. Oliver is strong, much stronger than we know. I asked Adina one day if she ever gets angry with how much Oliver screams, because it was overwhelming. She was like, "No mommy, it's fine, because I love Oliber." (Adina calls Oliver, Oliber.) He is now back to his happy self, hopefully the new medication works well.
We still have not received the H1N1 vaccine, it is frustrating but what do you do. So we are still keeping the kids away from everything. Halloween was Adina's, "Get out of Jail Free" pass.
The next three pictures are of Oliver working hard in therapy. The picture of him sitting alone was the first and only time he has done that. It was a quick one, two, three, quick take the pic! Small, tiny step, huge achievement. Yay Oli! He is one hard worker!
Adina blowing the candles out on her first cake. We had a little family party and a bigger party later. Happy Birthday Adina!
Godmommy Martha and Mr. Oliver enjoying the lovin!
Opening presents with a little help from the boys.
Adina and Oliver on Halloween. Adina is Tinkerbell and Oliver is a boy in a tu-tu. Adina thought he needed something on! The joy of having an older sister pick out your clothes!
Adina put her costume on and said, "Now I can fly!" Oh boy, not again. We had to have a talk that her wings were only pretend!
Adina and a new friend.
Tinkerbell had to be winterized for a night out in Minnesota.
Mr. Monkey (and his dad), Pumkin Man, Batman, and Tinkerbell.
Cuties on the couch. Never easy to get this many kids to look and smile. They had one thing on the brain. CANDY!
Adina and cousin Kali Rose who was a butterfly.
It was a fun and busy October that flew by. I wish I could say it went without any low spots but this was just our month and now it is time to make November great! After Oliver was in the hospital we temporarily thought his seizures were under control. He soon started to have them again. He seems to be changing a bit in the way he displays them, or adding on different types. We raised the meds again, did okay, and then one night Oliver woke up with the highest scream I have ever heard. I ran in just in time to catch a seizure and one more after (both less than 3 minutes). He became increasingly irritable, we could not do anything to calm him. So we just rocked him while he screamed. Now came the hard part. Oliver of course can't tell us what hurts so the neurologist was not sure if he was having more seizures or irritable from the Keppra. Some kids just don't react well to this med, the only way to know was to increase the dose again. If he became more angry, the problem was the med. Seems easy. We had three days of pure Hell to be honest. It was the medication, Oliver screamed for almost 24 hours straight, only sleeping for about 2 hours one night. I was so frustrated, not at Oliver, but with myself because I could not figure it out or help him. Friday we lowered his dose to stop the reaction and tomorrow (Monday), we will be in touch with the Neurologist to determine the new medication. Whew! This whole seizure business has been a huge learning experience and just when we think we have it figured out it changes.
We are appealing the rejected nursing care again. Now that his Epilepsy is somewhat out of control it should help our case. We have learned that getting help for the disabled comes with many hoops to jump through and a whole lot of needed patience. It is this way for every parent trying to get services for their child, not just us. So, we just take a breath, a big one! We will keep you posted. I know this was the mother of posts! A lot happened this month. Oliver is strong, much stronger than we know. I asked Adina one day if she ever gets angry with how much Oliver screams, because it was overwhelming. She was like, "No mommy, it's fine, because I love Oliber." (Adina calls Oliver, Oliber.) He is now back to his happy self, hopefully the new medication works well.
We still have not received the H1N1 vaccine, it is frustrating but what do you do. So we are still keeping the kids away from everything. Halloween was Adina's, "Get out of Jail Free" pass.
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