Well, I made it home and loved getting to spend all of Friday with Taryn and the kids. Now, as you can tell by the time of the post, I'm severely jet-lagged. Oliver woke up at 11:30 tonight and is still awake, so my 2 hours of sleep felt like a power nap and I can't fall back asleep.
Highlights from Down Under?
--Hearing the Dalai Lama laughing when he came on stage and was playing with the peace offering of the Aborigine leader
--Watching the Dalai Lama try to convince a 4 year old girl who was on stage to try to sit in his lap-he was unsuccessful
--Learning how to play "footy", Australian Rules Football from the pros of the North Melbourne football team
--Daily dialogue and wonderful sessions on media, climate, Pagans, and Intelligent Design/Creationism... ask me about it, I'll talk your ear off
--Having a great group from Luther Seminary to talk about our experience and to explore with
--Getting a surprise phone call at 5:15 in the morning from Taryn and Adina--Oli didn't talk on that call
--On our last night, we got to see baby penguins come to shore and feed by poking their heads through rocks on the shoreline, it was pretty cool to be five feet away from them
--Feeling like the rest of the world's religions have a lot more in common with how I believe than you might think--a desire for peace, love, and mutual understanding while accepting each others differences
--Getting home to Oliver and Taryn being awake at 1:30 in the morning, and then Adina giving me a great big hug in her sleep (it made the cold of the 4 degree temps melt away)
I'll post pictures this weekend, but it's time to try to get over the jet lag and get some more sleep.
Saturday, December 12, 2009
Wednesday, December 9, 2009
Brrr..
We finally got our first snowstorm! Only about six inches so nothing too bad. Some parts of the state got over a foot plus they are having blizzard conditions. My favorite kind of storm! I know all of you in California are jealous that you did not schedule a visit to MN now!
So a few updates since the last post. I know that I said last time that the urine tests all came back negative. Never mind that info. Genetic doc called today and she just received word from Mayo clinic that one level in the urine was elevated. I guess this comes with a slug of potential metabolic concerns. The doctor at mayo suggested that we retest to see if it is elevated again and then we will see what is next. I am a bit bummed about all of this testing we are doing again. I was hoping that this Christmas we would be passed this phase, perhaps next year. I could say no to all of it, but sometimes we feel that Oliver is really in pain, and if this testing can figure out why then we will do it. I would tell you the compound that is elevated but it is long and I forgot =) Like I said, I will worry more if it is elevated again. I am amazed at all of the different places they send these labs. California, Boston, Chicago, Mayo, Oliver has been studied many different places!
GI (tummy) doctor was last Friday. He said to continue as we are doing. He was a bit concerned about the fact that Oliver has been starting to vomit again, especially since he had lung issues last May. If he does get severe Pneumonia we will have to change his feeding tube to go lower into the intestines or perhaps a surgery. When Oliver vomits, he does not really know to cough it up and instead sucks it right back into his lungs. This could lead to severe problems. So far we have heard him gasping every time and run in his room and roll him over to help the little buddy. We sleep light, but don't worry, we do get our rest. As much as any parent of young ones I guess!
Last bit of fantastic news(sarcasm added here), Oliver was again denied by the state for nursing care. I am waiting on some calls to figure out exactly why. I know that when our fantastic (sarcasm again) Governor made budget cuts last year he cut a lot from where this money comes from. Yet, we have two new athletic stadiums, priorities. I am going to fight this until I get a good reason of the denial. I will camp out in front of Pawlenty's office door if I have to, not that he is ever in his office, or the state for that matter. It is very frustrating at times. We have run into people who feel that individuals with disabilities get too many services. Sure there are people who take advantage of the system, but every parent that I have talked to has to jump through the many hoops to get help for their child, often getting rejected. If you ever run into these people, set them all straight for us! Perhaps in a more tactful way that I often feel like doing!
John returns home tomorrow night (Thursday), very late. He did not bring a coat or his hoodie. I do believe they will all be in shock when they feel our below zero temps! John has not been able to write much, but I know that he had a great time and is ready to get home. Myself and the kids are really ready! Oliver gets angry with me every night that daddy does not get him up for the middle of the night feed. John sits and watches ESPN with him for a while, I feed him and put him back to bed. It is easy to see which parent he likes better in the middle of the night!
I hope you are all staying warm! We stayed in our pajama's all day today and watched the blowing snow out the window. Good day, would have been perfect if all four of us were together. Tomorrow!!
So a few updates since the last post. I know that I said last time that the urine tests all came back negative. Never mind that info. Genetic doc called today and she just received word from Mayo clinic that one level in the urine was elevated. I guess this comes with a slug of potential metabolic concerns. The doctor at mayo suggested that we retest to see if it is elevated again and then we will see what is next. I am a bit bummed about all of this testing we are doing again. I was hoping that this Christmas we would be passed this phase, perhaps next year. I could say no to all of it, but sometimes we feel that Oliver is really in pain, and if this testing can figure out why then we will do it. I would tell you the compound that is elevated but it is long and I forgot =) Like I said, I will worry more if it is elevated again. I am amazed at all of the different places they send these labs. California, Boston, Chicago, Mayo, Oliver has been studied many different places!
GI (tummy) doctor was last Friday. He said to continue as we are doing. He was a bit concerned about the fact that Oliver has been starting to vomit again, especially since he had lung issues last May. If he does get severe Pneumonia we will have to change his feeding tube to go lower into the intestines or perhaps a surgery. When Oliver vomits, he does not really know to cough it up and instead sucks it right back into his lungs. This could lead to severe problems. So far we have heard him gasping every time and run in his room and roll him over to help the little buddy. We sleep light, but don't worry, we do get our rest. As much as any parent of young ones I guess!
Last bit of fantastic news(sarcasm added here), Oliver was again denied by the state for nursing care. I am waiting on some calls to figure out exactly why. I know that when our fantastic (sarcasm again) Governor made budget cuts last year he cut a lot from where this money comes from. Yet, we have two new athletic stadiums, priorities. I am going to fight this until I get a good reason of the denial. I will camp out in front of Pawlenty's office door if I have to, not that he is ever in his office, or the state for that matter. It is very frustrating at times. We have run into people who feel that individuals with disabilities get too many services. Sure there are people who take advantage of the system, but every parent that I have talked to has to jump through the many hoops to get help for their child, often getting rejected. If you ever run into these people, set them all straight for us! Perhaps in a more tactful way that I often feel like doing!
John returns home tomorrow night (Thursday), very late. He did not bring a coat or his hoodie. I do believe they will all be in shock when they feel our below zero temps! John has not been able to write much, but I know that he had a great time and is ready to get home. Myself and the kids are really ready! Oliver gets angry with me every night that daddy does not get him up for the middle of the night feed. John sits and watches ESPN with him for a while, I feed him and put him back to bed. It is easy to see which parent he likes better in the middle of the night!
I hope you are all staying warm! We stayed in our pajama's all day today and watched the blowing snow out the window. Good day, would have been perfect if all four of us were together. Tomorrow!!
Thursday, December 3, 2009
Good Results
The genetic doctor called today and told us that some of Oliver's urine lab results came back all clear. I couldn't tell you what they were testing for because there are and have been so many. As long as they are negative I don't keep track. Then she said, unfortunately I have some really really bad news. At this point I almost started to cry, they were just words you don't want to hear from a genticist. Holding my breath I asked what it was. She said I hate to tell you this but...they lost Oliver's blood sample. Ahhhhh.. I almost laughed, she was so upset by this news. I just told her that really it is no big deal, things get misplaced, life goes on and we just redo the blood draw. Geez, there are bigger things in life to worry about. She said she called the lab, I am guessing she let them have it. I reassured her many times that really it was no big deal. The more I think about it the more I giggle. I hate to have him poked again but what do you do. I should just tell them to take an extra vial and keep it on hand! So, good news so far! My celebration for making it through the day while John is gone is three Oreo's and a glass of milk, that is where I am headed right now.
Sorry if there are any grammer/spelling mistakes, my proof reader is away for seven more days!
Sorry if there are any grammer/spelling mistakes, my proof reader is away for seven more days!
Wednesday, December 2, 2009
Having Fun
John has sent a few emails from Australia and is really excited! I think he was going to post at some point but the internet connection is turtle speed. I told him not to worry about finding faster internet connections and phones and to just enjoy himself, 10 days goes fast. I am sure he will give a great update over everything he saw when he gets home. Until then, he just wanted everybody to know that he made it safe and is enjoying the 80 degree weather! Lucky guy! It is going to be in the 20's here tomorrow, gotta love Minnesota. Adina and I are patiently waiting for the snow! As for me, I still have hair! The kids are being perfect little sweethearts. Well, as much as an 18 month old and a 3 year old can be
anyway! =)
anyway! =)
Monday, November 30, 2009
Missing Daddy
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!
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!
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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