We had a fantastic Christmas even with our big storm! Christmas Eve day we had lunch with Scott, Kara, and Kali Rose, went to church, and came home and spent the night and Christmas day just the four of us. It was the perfect Christmas of peace and quiet, minus the noise of two kids in the house! Here are some pics!!
I'm trying out my new hockey skates! First we got double blades, but talked to some hockey coaches who said if they learn on double blades, they will have to learn again how to balance on single blades. Adina got some Christmas money from her Great Aunt Marsha Klawiter and Uncle Tom Klawiter from California. That is what she used the money for and here she is practicing on the carpet pushing her shopping cart! Thanks Tom and Marsha!! That was really special!
Little Miss Kali Rose found her present early! With a face this serious we were not about to take it away!
The kids in their Christmas outfits.
Adina with the muff and hat she received from her Great Grandparents in northern MN. Adina first thought the muff was a duster!! Might be a great way to have her help me with the house work!!
Family picture time.
Yes, Adina and her baby are matching.
Adina explaining to her baby that Baby Jesus goes here, Mary and Joseph there, the shepherds who watch the sheep go there, and some other guys (wise men) live over there. She later saw a woman wearing a long fur winter coat and yelled, "Mommy, it's Mary!!" The woman kind of laughed, I'm not sure, is that a compliment to have "Mary" style clothes?
In our Christmas jammies from mom and dad.
Leaving cookies and milk for Santa. Yes, we believe in Santa in OUR house. Adina understands that Christmas is about baby Jesus. Sometimes we like to lighten up and have some fun! So, Santa lives in our house, until Adina figures it out in school someday.
The finished plate of cookies. Wow Santa(s) must have been hungry! Adina was a bit frustrated that Santa only took one bite of the last cookie and left it. She thought it was a bit wasteful! Guess she caught Santa there.
Adina reading Oliver his new black and white book. She really loves reading to Oliver.
Oliver smiling at the silly sounds mommy can make!
I'm all smiles! This Santa stuff is great!!
Adina helping Oliver open his gift. We don't do it for him, we put the paper in his hand and he will rip it. Oliver takes part in everything that we do, we never just do it for him!
Adina next to her kitchen that Santa brought for her.
Sunday, December 27, 2009
Sunday, December 20, 2009
Conversation
We made a last minute trip up north last week to visit my grandparents for Christmas. We have not traveled much since Oliver started having seizures, this was a bit of a test run. Oliver did great, minus the fact that he didn't sleep. He never sleeps, but it is a bit harder to manage away from home. Besides that, it all went well. We just know that the only people that can hold Oliver is myself or John. I know people want to hold him, but if we give in, then we go home and the seizures start. This may seem drastic, but as we have learned from other parents of children with seizures, this seems to really set some kids off. It's just life. My grandparents got Oliver a big stuffed Zebra. (Marty from Madagascar) Oliver can see him somewhat because he is black and white. They are now best friends, where ever Oliver goes, Marty goes too. I took him away the other night and Oliver let me have it. I got a video of Oliver talking to him. He will go on and on like this. He was a bit distracted here by me, but you can get the idea. Too cute for words!
Adina and I also baked some cookies for Santa. She loves to make cookies, well, eat cookies is more like it. Today we got Adina her first pair of ice scates, double blades. We will try them out tomorrow!
Yummy, the finished product!
Dumping the Sugar
Unwrapping the candy
Stir it up!
Marty my man! What's up!
Hey Mom! I'm just relaxing..
My three favorites.
More Christmas pictures to come. Looks like we might be snowed in for Christmas if the storm keeps coming this way. Perfect way to spend Christmas! The four of us warm and cozy at home.
Adina and I also baked some cookies for Santa. She loves to make cookies, well, eat cookies is more like it. Today we got Adina her first pair of ice scates, double blades. We will try them out tomorrow!
Yummy, the finished product!
Dumping the Sugar
Unwrapping the candy
Stir it up!
Marty my man! What's up!
Hey Mom! I'm just relaxing..
My three favorites.
More Christmas pictures to come. Looks like we might be snowed in for Christmas if the storm keeps coming this way. Perfect way to spend Christmas! The four of us warm and cozy at home.
Saturday, December 12, 2009
G'day
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.
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.
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.
Monday, October 19, 2009
More Up's and Down's
Adina is now 3 years old and proud of it. She also thinks that this means she is a grown up! We had two Birthday celebrations for her. On her actual day we had a little family celebration. A week later we had the big family and friends party. Adina had so much fun with everybody and received some very nice gifts. She asks everyday, do I have another party today? I will post pictures sometime in the future.
The day after the big party Oliver became very lethargic. He sometimes gets this way after having a seizure or just having a busy day, like the party. It continued and we were struggling to wake him up by the end of the week. I called the hospital to see what they thought, they said get him in right away. As soon as we got there they admitted him, we waited in the ER for his room to open for about 6 hours =). Oliver is known by some of the hospital docs there, nice to have some continuity of care if we have to be there. They knew something was way off. Once they called the Neurologist we figured out the problem. Oliver was most likely very overstimulated from all of the snuggling he got at the party. I guess if you try and imagine it, it would be. Not being able to see and having all of the different touch and smells. Anyway, this probably threw him into seizure mode. Basically he was having seizures on and off for 5 days, hence the waking up for a few minutes and sleeping again. He received some medication that interrupted the seizure and woke him up. Now we play the medication adjustment game some more. We got a prescription for the emergency seizure med. One dose given for any seizure over three minutes long. After insurance the cost is 300 dollars for one dose. Insurance knows we need it and will pay I suppose. Anyway, it helped and they did not need to start an IV. Oliver is an incredibly hard IV start. Last time he needed one, after nine tries, they brought him to the anesthesiologist who work in surgery to do this.
We don't want anyone to think that we are angry for snuggling Oliver. Trust me, we enjoy the break when others hold him. But now that we know this may be a trigger we cannot risk it. Don't be offended when we say, Please don't pick him up! Holding his hand is okay, talking to him is okay, but we can't risk more seizures. Not only is it hard on Oli, but our family.
We are now checking in with the neuro doc every other day. In the hospital with some of the health care team and other doctors advice, John and I have decided that we are not taking the kids out anywhere until they get the H1N1 shot. We are not sure how Oliver would tolerate this with his seizure and brain issues. We are not taking the chance. Until we get the shots, no church, no shopping (except the necessary), no visitors, we are now hermits! Yes, we may sound crazy, No, we don't care. We love you all and love the support we receive from everybody. That is why we know you all understand. Thanks =)
We are adjusting to this change in seizure pattern, trying anyway. I am not sleeping at night, I sit by Oliver's bed and watch him sleep. I have this intense fear I am going to fall asleep and he will have a seizure that will be missed. I lay in bed and get so nervous I just sit with my little man instead. Sometimes the fear just hits me and I have a good cry, it helps. This will normalize again. We were denied a nurse again, I will appeal until we get some help! A kid with this many issues including the worsening Epilepsy deserves some nursing care, and we desperately need some qualified respite.
Thanks again for all of the love and prayers. It really is what gets us through these not so great times. We will update with any news. Oliver has had two good days post-hospital!
The day after the big party Oliver became very lethargic. He sometimes gets this way after having a seizure or just having a busy day, like the party. It continued and we were struggling to wake him up by the end of the week. I called the hospital to see what they thought, they said get him in right away. As soon as we got there they admitted him, we waited in the ER for his room to open for about 6 hours =). Oliver is known by some of the hospital docs there, nice to have some continuity of care if we have to be there. They knew something was way off. Once they called the Neurologist we figured out the problem. Oliver was most likely very overstimulated from all of the snuggling he got at the party. I guess if you try and imagine it, it would be. Not being able to see and having all of the different touch and smells. Anyway, this probably threw him into seizure mode. Basically he was having seizures on and off for 5 days, hence the waking up for a few minutes and sleeping again. He received some medication that interrupted the seizure and woke him up. Now we play the medication adjustment game some more. We got a prescription for the emergency seizure med. One dose given for any seizure over three minutes long. After insurance the cost is 300 dollars for one dose. Insurance knows we need it and will pay I suppose. Anyway, it helped and they did not need to start an IV. Oliver is an incredibly hard IV start. Last time he needed one, after nine tries, they brought him to the anesthesiologist who work in surgery to do this.
We don't want anyone to think that we are angry for snuggling Oliver. Trust me, we enjoy the break when others hold him. But now that we know this may be a trigger we cannot risk it. Don't be offended when we say, Please don't pick him up! Holding his hand is okay, talking to him is okay, but we can't risk more seizures. Not only is it hard on Oli, but our family.
We are now checking in with the neuro doc every other day. In the hospital with some of the health care team and other doctors advice, John and I have decided that we are not taking the kids out anywhere until they get the H1N1 shot. We are not sure how Oliver would tolerate this with his seizure and brain issues. We are not taking the chance. Until we get the shots, no church, no shopping (except the necessary), no visitors, we are now hermits! Yes, we may sound crazy, No, we don't care. We love you all and love the support we receive from everybody. That is why we know you all understand. Thanks =)
We are adjusting to this change in seizure pattern, trying anyway. I am not sleeping at night, I sit by Oliver's bed and watch him sleep. I have this intense fear I am going to fall asleep and he will have a seizure that will be missed. I lay in bed and get so nervous I just sit with my little man instead. Sometimes the fear just hits me and I have a good cry, it helps. This will normalize again. We were denied a nurse again, I will appeal until we get some help! A kid with this many issues including the worsening Epilepsy deserves some nursing care, and we desperately need some qualified respite.
Thanks again for all of the love and prayers. It really is what gets us through these not so great times. We will update with any news. Oliver has had two good days post-hospital!
Wednesday, September 30, 2009
More Stuff
This week has been a busy week of appointments. Monday Oliver went to see his PM and R doc, (Physical Med and Rehab doc). She was happy with how Oliver is now bringing his hands together. This is very hard for somebody who cannot see and is missing the part of the brain that brings everything to the center. Yay Oli! We are proud too=) He was having a good day and was holding head up well, she was pleased. His legs are stiff, which we have known. His x-rays looked great and we now have his baseline to compare to in the following years. The x-ray tech said, "Can't he walk?" No and most likely he will not. "Oh that is so sad!!" She said. No actually it is not sad, Oliver is happy, it is okay!! You would think she would be used to kids not walking working at Gillette! Dr. Q is recomending that Oliver is also followed by an Ortho doc. Right now Oliver is great, but as he starts to use his legs more he could develop more problems. Better to know an Ortho doctor before you really need one. Also, we will be getting fitted for a special needs car seat tomorrow and will be evaluated by a speech therapist tomorrow. Within the next 6 months Oliver will be fitted for AFO's. They are braces that will go over the lower part of his legs. He needs a therapy chair, and most likely will soon need a stander. A contraption that helps him learn to bear weight. She also noticed when Oliver stands he points his toes and curls them under. Not a big problem, just more to unlearn. Keep in mind these bits of equipment do not produce miracles, just gives Oliver the best chance. Today I was stretching Oliver on the floor and for some reason started saying "WoooooooW" in a really annoying and silly way. Oliver loved it and actually started yelling back at me. The four of us were laughing so hard! As soon as we turned the camera on he stopped.
We made the final wheel chair order and when our lovely insurance covers it we will go to Gillette to have them make it special to fit Oli perfectly. Speaking of insurance, MA contacted us and said once again they were dropping us because I have a job. I am still far under the hours/pay for them to drop us. We are appealing it of course. I actually went to their office to speak/give them a piece of my mind. We could not even see our worker, I paged her and spoke to her on a phone. That is what everybody there has to do, wait in line to talk to somebody on the phone. Nice system. She then asked, "Is your son even disabled?" You can only imagine my response. I will let you use your imagination. Remember they get copies of all of the medical reports. Cross your fingers and say a prayer. Just when we need five pieces of equipment we hold our breath that the system won't let us down. So that is our quick update. We will soon add pictures. Adina turns 3 on the 4th and is having her family Birthday Party on the 11th. Let me know if you will be around, there will be pizza and ice cream cake of course!
We made the final wheel chair order and when our lovely insurance covers it we will go to Gillette to have them make it special to fit Oli perfectly. Speaking of insurance, MA contacted us and said once again they were dropping us because I have a job. I am still far under the hours/pay for them to drop us. We are appealing it of course. I actually went to their office to speak/give them a piece of my mind. We could not even see our worker, I paged her and spoke to her on a phone. That is what everybody there has to do, wait in line to talk to somebody on the phone. Nice system. She then asked, "Is your son even disabled?" You can only imagine my response. I will let you use your imagination. Remember they get copies of all of the medical reports. Cross your fingers and say a prayer. Just when we need five pieces of equipment we hold our breath that the system won't let us down. So that is our quick update. We will soon add pictures. Adina turns 3 on the 4th and is having her family Birthday Party on the 11th. Let me know if you will be around, there will be pizza and ice cream cake of course!
Wednesday, September 16, 2009
John's Art
I was looking at some work that John had to do for one of his classes, Gospel and the Global Media. He had to do a drawing or something that represented him and put it on his class blog. Well, I love it and thought you should all see it as well. I will also put what he wrote about it. Enjoy!
I used my illustration to set my own table. There are four people in my family and each of us is represented in this photo which is laid out on our kitchen table--the place we share meals as a family and representative of sharing our lives and faith with friends, family, and neighbors.
Items of note:
At the bottom of the photo, my wife Taryn's stethoscope shows her nursing care and love for people, and also the IPod with headphones shows how she enjoys running and being outside.
My daugter Adina is almost 3 and loves Dora the Explorer--if you don't have kids, Dora is the American Idol of toddlers. She also has a stethoscope from her "doctor" kit because she loves to take care of people and is like her mom.
Then, you see a feeding tube and stuffed animal. This represents my son Oliver, who is 1 1/2 and has a feeding tube in his stomach to get most of his nutrition/medicine. He has severe developmental and physical disabilities from birth, but he has taught me and my family so much about love and overcoming obstacles. He may never walk or talk, but he communicates by smiling and laughing--and he loves to bring that stuffed animal to his mouth which always brings a smile to my face.
I am represented by my well-worn Twin's cap which shows my love of sports, as well as the Bible demonstrating my journey at seminary, but also our family's united faith. Each of our items is clustered together--family and togetherness are essential to our lives. Each day, Taryn and I watch Dora with Adina and feed or do therapy with Oliver and we love being outside.
On top of the Bible, I borrowed some of Adina's blocks to build a partial wall. There are walls in each of our lives, but as long as we leave room to come in and out, we are constantly interacting and sharing with our neighbors and don't let the walls hold us back. We are living in a world which has walls built by the media and different perceptions that influence who we are--through cartoons, sports teams, the music we listen to, the version of the Bible we read, and the reaction people have to seeing my son, but through it all, love unites each characteristic.
I used my illustration to set my own table. There are four people in my family and each of us is represented in this photo which is laid out on our kitchen table--the place we share meals as a family and representative of sharing our lives and faith with friends, family, and neighbors.
Items of note:
At the bottom of the photo, my wife Taryn's stethoscope shows her nursing care and love for people, and also the IPod with headphones shows how she enjoys running and being outside.
My daugter Adina is almost 3 and loves Dora the Explorer--if you don't have kids, Dora is the American Idol of toddlers. She also has a stethoscope from her "doctor" kit because she loves to take care of people and is like her mom.
Then, you see a feeding tube and stuffed animal. This represents my son Oliver, who is 1 1/2 and has a feeding tube in his stomach to get most of his nutrition/medicine. He has severe developmental and physical disabilities from birth, but he has taught me and my family so much about love and overcoming obstacles. He may never walk or talk, but he communicates by smiling and laughing--and he loves to bring that stuffed animal to his mouth which always brings a smile to my face.
I am represented by my well-worn Twin's cap which shows my love of sports, as well as the Bible demonstrating my journey at seminary, but also our family's united faith. Each of our items is clustered together--family and togetherness are essential to our lives. Each day, Taryn and I watch Dora with Adina and feed or do therapy with Oliver and we love being outside.
On top of the Bible, I borrowed some of Adina's blocks to build a partial wall. There are walls in each of our lives, but as long as we leave room to come in and out, we are constantly interacting and sharing with our neighbors and don't let the walls hold us back. We are living in a world which has walls built by the media and different perceptions that influence who we are--through cartoons, sports teams, the music we listen to, the version of the Bible we read, and the reaction people have to seeing my son, but through it all, love unites each characteristic.
Saturday, September 5, 2009
Day of F's!!
First things first... I finally got a job!! It was not something that I perhaps first thought I would be doing, but it sure is funny how things just happen to fall into place. I have been worried all summer about finding a job and about when I do, who will watch Oliver. It has been a source of MAJOR anxiety for me. Finally I just threw my hands up and said it will all fall into place. A few days later I got a call about a job with a pediatric home health company. When I went in to have my TB test they asked how much experience I had with special needs children. Well of course little Oli came up and the nurse asked me how many nursing hours he received. Nursing hours, what do you mean? We had never been told that he would qualify for this, only that Oliver was not yet old enough for a personal care assistant. The nurse set up an assessment of Oliver, came to the house, and recomended to the state that he gets 48 hours of private nursing hours! (Cross your fingers that the state agrees, we all know my past frustrations with issues like this). Not only that, but I could get paid 20 of those hours!! So I got a job and somebody that could spend one on one time with Oliver and know what to do if and when he has his next seizure, starts to choke or aspirate, do the feeding tube and meds, and on and on!!! Like I said, it fell into place!! I will keep you updated on the progress of that. He has his wheelchair eval in a few weeks.
We took the kids to the State Fair and Adina loved it, Oliver, not so much. I joked with John that it was our day of F's. (Sounds bad huh?) Adina has been saving coins to bring to Feed My Starving Children (Great Organization.) She went in and handed the woman the coins and said, "So where are them kids I'm gonna feed?" She was pretty proud about it. Next we went to the Fair and had some fun! Adina went down the slide with me, on the way down she was so scared she had a big fluff! We ate a lot of food and all of this caused a lot of fatigue, and a few more fluffs! It was a great family day! So there is our day of F's!!
We have been noticing lately that Oliver is getting stared at a lot more. Some people are so rude about it. We understand that it is human nature to be curious and look, we all do it. I usually don't mind. Then there are times that people look disgusted. One woman at the fair came and stood right in front of the stroller and looked down at Oliver with a gaze I could not even explain. Adina even noticed it and looked up at me like, what's with her? I went and stood in between her and my children. John was really upset by this and I was as well. What do you do? There are ignorant people out there. We have been told by other parents that this and the comments would come sooner or later.
Anyway, enjoy the pictures!! Adina has a birthday coming up soon. She has almost invited everybody we have recently seen, including many friends, random kids on the playground, grocery story, and the maintanence man! We don't even have the party planned yet! She continuously amazes us with Oliver. She always thinks about him. At the fair he got scared with the loud sounds. They sit next to each other in the stroller. She said. "Mama, we gotta get outta here fast, little Oliver does not like this!!" She put her arm around him and rubbed is head until he stopped crying.
Adina and her second cousin Abby.
Adina likes to get in bed with Oliver to give him kisses.
Adina tickling Oliver.
Adina and Papa H. playing Puff the Magic Dragon. Adina's favorite song. When Oliver is upset she will sing You are My Sunshine to him. Not sure it helps =)
Adina carries the coins into Feed My Starving Children. They were heavy!
Adina giving the coins and telling the lady, "This is to feed them kids."
Mommy and Adina going down the big slide at the State Fair. We got a little air on the bumps!
Mommy and Adina on the Bumble Bee ride.
The first solo ride!! She loved it!
This would be the fatigue part of going to the fair.
Cozy in bed again.
Last day at the beach for the year.
Close up #1.
Close up #2.
Cousin Charlie on his 3rd Birthday! We had a great celebration!
We took the kids to the State Fair and Adina loved it, Oliver, not so much. I joked with John that it was our day of F's. (Sounds bad huh?) Adina has been saving coins to bring to Feed My Starving Children (Great Organization.) She went in and handed the woman the coins and said, "So where are them kids I'm gonna feed?" She was pretty proud about it. Next we went to the Fair and had some fun! Adina went down the slide with me, on the way down she was so scared she had a big fluff! We ate a lot of food and all of this caused a lot of fatigue, and a few more fluffs! It was a great family day! So there is our day of F's!!
We have been noticing lately that Oliver is getting stared at a lot more. Some people are so rude about it. We understand that it is human nature to be curious and look, we all do it. I usually don't mind. Then there are times that people look disgusted. One woman at the fair came and stood right in front of the stroller and looked down at Oliver with a gaze I could not even explain. Adina even noticed it and looked up at me like, what's with her? I went and stood in between her and my children. John was really upset by this and I was as well. What do you do? There are ignorant people out there. We have been told by other parents that this and the comments would come sooner or later.
Anyway, enjoy the pictures!! Adina has a birthday coming up soon. She has almost invited everybody we have recently seen, including many friends, random kids on the playground, grocery story, and the maintanence man! We don't even have the party planned yet! She continuously amazes us with Oliver. She always thinks about him. At the fair he got scared with the loud sounds. They sit next to each other in the stroller. She said. "Mama, we gotta get outta here fast, little Oliver does not like this!!" She put her arm around him and rubbed is head until he stopped crying.
Adina and her second cousin Abby.
Adina likes to get in bed with Oliver to give him kisses.
Adina tickling Oliver.
Adina and Papa H. playing Puff the Magic Dragon. Adina's favorite song. When Oliver is upset she will sing You are My Sunshine to him. Not sure it helps =)
Adina carries the coins into Feed My Starving Children. They were heavy!
Adina giving the coins and telling the lady, "This is to feed them kids."
Mommy and Adina going down the big slide at the State Fair. We got a little air on the bumps!
Mommy and Adina on the Bumble Bee ride.
The first solo ride!! She loved it!
This would be the fatigue part of going to the fair.
Cozy in bed again.
Last day at the beach for the year.
Close up #1.
Close up #2.
Cousin Charlie on his 3rd Birthday! We had a great celebration!
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