12 Days

Well it has come time again for my favorite 12 days of the year! The 12 days begin on December 21 in anticipation of my birthday and conclude on January 1st. This year I am feeling particularly Christmasy (I realize that is not a real word!) I owe this to the fact that Tom and Jack are so excited for the big day. Tom has a few things that he has had his eye on for months and I happened to have a conversation with Mr Claus himself and know that those items will be under the tree come Christmas morning. Jack on the other hand is just thrilled with the idea of Santa and all of the unwrapping.
In other non holiday news. Adam is back at US Bank. He was offered the position of Customer Service Manager at the Mayfair branch and considering that he was miserable at Wells Fargo it came at just the right time. He likes the new job and is very busy and happy. I have been spending much of my free time baking and getting ready for Christmas. Tom is in the beginning stages of reading. He is doing very well. Jack is wild and crazy as ever. His new thing is refusing to wear clothes. He feels it is necessary to remove all of his clothing right down to his socks each time he goes to the bathroom has a small itch or sometimes just when the mood strikes! To all of those that have come to our house and were surprised to see a naked little boy running around- we are sorry! Hopefully he grows out of this! :)
Merry Christmas and Happy New Year to everyone!! I doubt if I will post anything else until next year... See you in 2008!

Billy Joel, Kitchenaid, Cookies, Cakes, and Christmas...

Well my dream has finally come true! I finally have my very own Kitchenaid mixer. A Heavy Duty Plus 5 quart mixer to be exact! She has a 325 watt motor and a heavy duty transmission. I have not named her yet, we are still getting to know each other. I have made countless batches of cookies, mashed potatoes, hummingbird cake, banana bread pudding, spinach dip and breakfast pie! I have only had the mixer a little over a week!! Needless to say I have been very busy. Tom and Jack love to share in the baking too! We will continue to think of a name that suits her and give you a formal introduction when we have one. What a nice Christmas/Birthday present! Thanks Mom and Bob! As if I wasn't already the luckiest girl around getting my mixer... Adam bought me tickets to the March Billy Joel show for my birthday! He will be coming to the Bradley Center, it should be a great show. I have always wanted to see him as he is one of my favorite artists of all time. You can imagine the shock when Adam told me- I didn't even know that he was coming to town!

Yesterday we took advantage of the wintry weather and stayed inside and put up the Christmas decorations. I decorated a lot because Jack is very into Christmas this year. I think it will be the first year that he really understands and can look forward to it. Tom has been busy at school and has started to learn to read. He has a few little books from school that he reads. At this point it is more memorization but I am told that is the way they begin. He is very proud of his new abilities!! That is all I have for now. I hope everyone is well and getting into the holiday spirit!!

Is it Really Almost Thanksgiving???

I can't believe that the year is already almost over! I am sitting here wondering where summer has gone. We have been very busy around here. We have begun to proceed with the work in our basement. The people that we bought the house from suddenly told us that they were not going to fix anything else. They had been hoping to be able to cut some corners and the city would not allow it so they got frustrated. Adam met with the attorney yesterday and he is willing to take the case on contingency so we do not have to pay unless we win. He feels that we have a very strong case. Last week we had the plumber over and he told us it just was not worth it to bring the bathroom up to code so we had to have it taken out. We have gotten quite a few estimates from various electricians and plan to accept one of the bids next week and have them get started on repairing the electric and lighting. We should be able to get the lawsuit started shortly and hopefully it will go quickly. At this point we just want this all behind us.
In other news, Jack had a double ear infection last week. Last night he woke up with a fever, hopefully the ear infection is not back. Adam leaves for Appleton again week after next, that should be the last trip for awhile...we hope!!! We had our appointment at the genetics clinic for Tom last week. He had some blood drawn for a micro array blood test to determine if they can find anything connecting all of his issues. It will take about a month to get the results. We also discussed my Wolff Parkinson White Syndrome. The doctors said that it would be a good idea if Jack had an EKG at some point to make sure that he does not have it also. They are not entirely sure but said there seems to be increased evidence that it is genetic. They have really come a long way in this area, when I had my surgery it was a very risky thing but these days I am told that the catheter ablations are relatively safe. I guess that is all I have for now, check back for more updates. Happy Thanksgiving!!

Just a Quick Note...

I have added a link called Everything Autism on the side of the page. This will take you to a new page that I created. I will try to keep the page updated at least once a week after we return from North Carolina. Please check back often for updates and feel free to email me with suggestions. I hope everyone is doing well. Sorry for the short posting. I just wanted to let everyone know about the new page but really don't have time to write...

A Diagnosis...

Sorry that the last post was incomplete, I had started to write it on Monday and not finished or posted it. I figured I would post it and then start a new one now.

Yesterday we went to our long awaited appointment at the Autism Clinic in Madison. Tom was formally diagnosed with Asperger's Syndrome. We knew this was coming. I actually had just been talking to the Neurologist about it, she told me that even though it would be hard I should remember that at this point this is what we want so that we can move forward and get services from the school and what not. As she was saying this I thought I would have no problems and would be pleased with a formal diagnosis, as that is a very necessary piece of the puzzle that had been missing. It has not been as easy as I thought. I am not sure why really. I knew already what they were going to say but I guess I was not as ready as I thought to hear those words. As everyone knows I have already done tons of research on Autism. However, I have yet to research Asperger's specifically. When I am ready to start doing so I will post information and links to the website. For now though I am not ready. Please feel free to email me information you find, ask questions or make comments as always these will be very welcomed.

Have a good week. More to come later.

Sorry it has been so long...

I cannot believe how long it has been since my last post. Time has just been flying by!! Adam has been traveling for most of the month doing training for work. He will leave again on Tuesday and return home Friday, after which he will remain home until December!! There are numerous updates concerning Tom, it has been quite an eventful month. We returned to the Neurologist for a follow up. Tom has been shaking his head a lot and for anyone that has seen him do it, you know that it can be quite alarming. The doctor assured us that this was just a new tick and not a reaction to the medication or anything new. Since then Tom has actually stopped the head shaking for the most part and moved back into grunting and throat clearing, so I guess she was right! We have been referred to see a geneticist and were very lucky to have been able to get an appointment on November 7th due to a cancellation. Tom also had a test done at Children's Hospital to determine if he had any hearing loss in either of his ears. He had to go under anaesthesia for the test so that was a little nerve wracking. We ended up being at the hospital from about 11:30am until 9:00pm. In the end the test showed no hearing loss and Tom got to ride out in a wheel chair while eating a purple popsicle so all was well!

Updates all around...

Well we have had a busy past week. Tom started kindergarten on Tuesday. The first couple of days were a little rocky but with a few small routine adjustments we are smoothing things out. He has been very tired after school, but has seemed to be enjoying himself.

On the medical front, things seem to be looking up. We are still working to get Tom up to the full dose of amitriptyline but are pleased to report that so far there seems to be no negative reactions. Giving him the corn starch in the morning has been doing wonders. He has not had his usual periods of insatiable hunger but instead has been eating well throughout the day. We have also noticed that he seems to be putting on a bit of weight. All of these are very positive signs for the road ahead.

Yesterday we we were pleased to participate in Dylan's Run. We ended up having 35 team members. Everything went very well and it was a great day for a walk. Thank you to everyone that participated, and a special thanks to Kelly Maddern (Kami's mom) for designing such a nice logo for our shirts- ours was the best one there!

In other news, my little baby sister went off to college! I remember the day she was born like it was yesterday, even down to the shirt I was wearing. As I held her tiny body in my arms I could have never imagined the beautiful smart women that she would someday be or the wonderful friend that I would find in her. Though I am sure she will do wonderful with every aspect of her changing life I still sit here a little nervous for her. I know that at times change can be hard and scary and that sometimes just when you feel all grown up you find yourself in a situation that you don't know how to handle. It is those times that it will be helpful to call your sister- even if it is 2:00am!!!

Well as the weather gets cooler and another summer is behind us it is nice to look back on all the fun we have had and look forward to being able to relax for a little bit. Not for long though... Christmas is coming!!!

An Update...

Well as usual we have been very busy and have many updates to share...
Last week Tom was diagnosed with Cyclical Vomiting Syndrome. We spent the better part of a day talking to a few different doctors, psychiatrists and nurses. We were given a lot of great information and have worked out a plan for treatment. Tom is now on Amitriptyline to help reduce his anxiety and excitability- these are the triggers to the sickness. We have had to start him slowly on the medicine and he will be up to his full dose in a few weeks, it will then take about 3 months to see if it is working. He takes the pill at night and it really puts him into a deep sleep, I have noticed since he started that he seems more refreshed and less easily aggravated during the day. Perhaps the sound sleep is part of what he needed also. The doctor also concluded that there is a problem with his mitochondria- basically his body has a problem with the way it uses food and energy. His body uses up everything right away and then after awhile it will crash, as if he is starving- this can be another trigger for the sickness. In the morning Tom has to take 2 tablespoons of uncooked corn starch mixed in pudding, this will slowly and evenly break down throughout the day to keep his energy level up. He will also be drinking energy drinks, sports bars and other foods that provide extra energy. Next time Tom gets sick we will have to bring him up to Children's Hospital to get blood work done while he is actually sick. This will give us a better understanding of exactly what he might need. We also talked to a psychologist. She was very helpful in giving us some ideas as to how things with Tom need to be done a little differently than with other children and how we can do some relaxing exercises that he can use when things become too much for him. She also offered that she would be happy to talk to his teacher/school if they need a better understanding of CVS or Tom's specific behaviors. Now we are just waiting to hear when our appointment will be at the Autism clinic. Please feel free to leave a comment or email me if you have any other questions.

In other news, as many of you know we are still battling with the people that we bought the house from about the work they did in the basement. They got the building permit to get everything fixed months ago and we are still waiting for this all to end. Last Saturday night, something in the basement started fire and we had to call the fire department and evacuate the house and everything...in the rain...with the kids...at midnight!! At the time we had been doing the laundry and they suspected that there was something wrong with the electric running to the washer and dryer. For now we cannot do laundry here- which is a huge drag. And as many of you may understand with the demands of 2 little boys, 1 of which gets sick often, we were a bit behind on the wash as it was- this is not helping!!! Oh well, as we see it, it is more important to take our kids to the park and for walks and spend time with them than make sure every last load of laundry is done everyday. When they are grown they will remember the walks and trips to the park, and as for the couple of laundry baskets in the basement- I'm sure they will forget. Adam has an appointment with an attorney today to discuss the basement and what we should do at this point.

Well that is all for now, hopefully next time I will have some new pictures to go with our updates! It has been so hectic lately that we have not even taken many pictures...sorry!

Dylan's Run/Walk Team

We are trying to get a team together to participate in Dylan's Run for Autism. The date is Sunday September 9th. It is a 2 mile run/walk through the summerfest grounds. After the run/walk is over you can stay for the Indian Summer festival if you want. The fee to enter is $20 per person. You will also be able to collect additional pledges if you would like. We need to have atleast 10 people to have an eligible team. I will need to drop off registration forms by August 17th at the very latest but would like to do it as soon as possible. Please email or call me if you are interested in joining our team. Please check out the link below for more info on the event...

http://dylansrun.com/

What a week...

Well it has proven to be a very busy week in our household. Adam has enjoyed his first week at Wells Fargo! Jack has Lyme Disease. It is not as serious as it sounds, he will be on antibiotics for 2 weeks and it should clear up! And the best news of all...Tom does not have Fragile X Syndrome. As I was told the news over the phone I felt tears welling up in my eyes. I didn't even realize how scared I was about this until I found out that he was in the clear. I was not ready to give up the dreams I have for Tom to grow up and get married, live on his own, have children or do whatever it is that he wants to do. We got the results back for all of the tests and labs that we have been doing the past few weeks and everything was normal other than one of the tests that had high amino levels. He will be retested next week and if it is high again we will go see a geneticist to determine what the exact problem is. What we were told was that this would indicate that the way that Tom uses food and energy could not be working correctly, this could lead to a lot of the physical symptoms that he has been having. Either way it is a much better diagnosis than Fragile X. Adam spoke to the pediatrician yesterday when he was there about Jack and she said that 98% of Tom's problems may all come from the Autism and we may have to in the end learn to cope rather than hope to find some sort of cure. We will see what the blood test this week says. If all is fine with that we will be going to a cyclical vomiting clinic at Children's Hospital where they will focus more on finding a treatment for Tom's bouts of sickness rather than continuing to search for a reason. Apparently children with Autism or chromosomal abnormalities often have physical symptoms that can never be identified with any one condition or disease. In the end the most important thing becomes finding a treatment for the problem rather than the cause. It is hard as a mother to know that you may have to leave questions unanswered and continue to have what your child is going through misunderstood by teachers, friends, family, other parents and even doctors. As I am discovering more about the Autism spectrum and particularily PDD-NOS (pervasive developmental disorder- not otherwise specified) it seems that there may always be more questions than answers and we will just have to learn what we can and do the very best that we can with that knowledge. All in all it has been a great week, Lyme Disease and high amino levels included. We will celebrate with an indoor pizza picnic party tonight(Tom's idea). Goodbye for now. Thank you to everyone that has prayed for us and thought of us- I know that it has made a difference.

Nothing to do!!

We are having the relaxing weekend we have been craving this weekend- we have nothing to do but whatever we want! Here is an update on everyone...
Adam- starts his new job on Monday
Cris- settling in to caring for 2 babies, everything is working out great.
Tom- a few tests last week, waiting on results
Jack- his lastest thing is eavesdropping on conversations while we are out places and then repeating them for everyone to hear!!

Everything has been going pretty smoothly here, just how we like it!

Point/Counter Point

As far as I’m concerned, there was no clear-cut winner last night. Yes, Obama did really well, but Bill Richardson held on pretty hard too. Granted, he doesn’t have a cold chance in hell of winning, but that’s beside the point. I was so excited for this You Tube debate and the whole new concept they were going for, but how disappointing. There were barely any good questions and most people took it upon themselves to look retarded in front of America. I especially hated the hick video from Tennessee. How stupid. Hillary barely got a chance to answer any of the questions, but how could you when John Edwards was always babbling on about something that was ‘really important to him’. Whatever. He’s got too much money and is severely out of touch with real America. Go Hillary! -Adam

A Genuine, Honest & Forthcoming Candidate...

Hopefully everyone was able to catch the YouTube debate last night. I was very impressed by Barack Obama. I think that he answered every question honestly without trying to just say what people may have wanted to hear. I was very pleased with the answer to the question about minimum wage. From The Cornell Daily Sun-"On a seemingly dull question about whether each candidate would work as President for minimum wage, everybody said yes, of course, but Obama took it a step farther. He talked about how he could afford the minimum wage for four years given his wealth, but average Americans could not, focusing on true issue with the minimum wage." All in all it was a great debate. In my eyes Obama was the clear front runner!

Happy Monday...

Hi everyone, hope you had a good weekend. We have been very busy since I last wrote. We have been taking advantage of all the summer activities that have been going on. On Wednesday we went to the opening night of the Waukesha County Fair and we saw a demolition derby. Jack loved it. Over the weekend we intended to have a low key at home weekend. That never materialized! On Saturday the kids and I went to a farm fair at Elegant Farmer. We went on a hay ride, hunted for candy amid a bunch of hay and enjoyed some delicious roasted corn. On Sunday we went to the Waukesha County Fair again and saw a tractor pull. I know some of you are thinking this sounds really boring! If someone had asked me 5 years ago if I wanted to go I would have offered to do anything else. Not only are tractors boring, but they are also very uncool! Luckily, I have gotten over myself cause they are great fun. It is amazing what sorts of things you will get excited by because you know your kids will love them. It is really exciting and Jack just loves the loud noise, the mud and of course the trucks! We had so much fun that we are going to go to another tractor pull on Tuesday night at the Washington County Fair.

As Adam said in his earlier posting he bought me a laptop. It was a totally unexpected wonderful gift from a wonderful husband.

Random Stuff....

We went to Old Navy tonight and Cris stocked up on clothes. She got about 15 different things for $1.97 each. We love value in this house, and Old Navy is it (no, I'm not being paid for this either!). We also went out to dinner at Fuddruckers and stopped at the mall and just bummed around too. It was a fun night.

I bought Cris a laptop today for our anniversary (which isn't for another couple of months) but, her sister took her's back so Cris was at a loss without it now. Alright, time to do something else.

Ready For A Change....

Well, it's Adam. This is my first post on here I think. Only one week of work at US Bank left and I'm ready for a new change. I'll be going to Wells Fargo on July 30th. I'll be doing the same position over there as a personal banker, but they offered me about 20% more a year then I'm making with US Bank. I love working at US Bank, but change is a good thing and I'm excited about doing something different. The benefits over there are amazing too! I'll be getting four weeks vacation off the bat and the health coverage is excellent. Given our medical appointments with Tom, it should be like living a new life with our new health insurance. Not so many co-pays and bills trickling in over time anymore. On the other hand I'm going to miss the people I work with (most of them), some I could do without, but it'll be like that where ever I go. I've really gotten to know some of these people and they are now friends, not just co-workers. I'll post more soon (someday). This blog is really more of a Cris thing.

What a week...

Well it has not been too long since I have written but a lot has gone on! Tom lost his first tooth and is looking forward to a visit from the Tooth Fairy this weekend! Adam accepted a new job!!!! He will be working at Wells Fargo Bank beginning July 30th. This is a big deal for us because we have been the US Bank family for so long. This job is a great opportunity for Adam and it will further his career a great deal! We will keep you updated as to how it goes. Bye for now.

Neibauer Updates

Well despite our best efforts to try and relax we have been as busy as ever! We finally finished our upstairs bathroom and it turned out great. Now we just need to finish our landscaping project in the front of the house and we will have completed all of our current projects.

Tom saw a new Neurologist last week. She suggested that Tom may have fragile x syndrome. We did a blood test but more than likely it will take a couple of months before we get the results. After finding out more it does seem to match everything that Tom is going through and it would also explain some odd physical characteristics that he has like flat feet and a large indent in the middle of his chest. We are still trying to keep a positive outlook at this point but still trying to be realistic and prepare ourselves for the fact that it may be fragile x syndrome. We would appreciate your prayers at this point. We will update again when we find out more.

It's been awhile...

Things have been pretty quiet around here so I have not written in awhile. Tom finished school on June 8th and has been enjoying the break. He will start summer school next week. We bought a new van today- new to us anyways. Adam's van had clearly seen better days and with me starting to watch Ben in July I needed something a little bigger. Tom has not been sick since a week ago yesterday. Without having to go to school he spends a lot more time relaxing and spending time alone. I wonder if this more calm easy going way of living has something to do with the way he feels. We will see what next week brings with school. Well thats all for now. We hope everyone is doing well and enjoying the nice weather!

Busy, Busy, Busy...

Well it seems like we have been going nonstop since I last wrote.
Jack enjoyed his trip to the zoo, though he was not too crazy about the bus ride. Thanks Amanda for taking him with your class. We have posted tons of pics of the trip in our web album.
We enjoyed our train ride on the East Troy railroad over Memorial Day weekend. As an added bonus when we arrived in East Troy there was a little festival going. The boys were thrilled to see that the streets were lined with firetruck for them to look at and climb on.
Tom has been doing better in school since we discontinued his medication so we have decided to hold off on the psychiatrist for now. We are waiting on an appointment with a Neurologist at Children's hospital on the 24th. He has been getting sick more frequently so we are hoping that the doctors there will be able to find something out quickly. Hopefully we will get the brain stem MRI right away and we are keeping our fingers crossed that a tumor will once again be ruled out.
Yesterday my sister, Kelly graduated from high school. I am very proud of the women that she has grown up to be, I know that our dad would be proud too. She will be working over the summer and then attending Whitewater in the fall. As I watch her life changing it is bittersweet, I wish I could keep her safe from all of the hurt that I know is out in the "real world" but I know that she will find a lot of wonderful new friends and experiences all the way too.
After a period of busyness we plan to spend this coming weekend at home trying to finish a few projects that we have started in the past few weeks, and yes I'll admit it, some of them were even started a few months ago!
Hopefully everyone is doing well and enjoying the nice weather. I will post more when there is more to tell.

Exciting Weekend Plans

Jack will be going on his first field trip on Friday! And he's not even in school yet! He will be going to the zoo with Amanda and her class. It will be his first time to the Milwaukee County Zoo and I am sure that he will have loads of fun.

We will be staying at my parents house over the weekend while they are out of town. We are planning to cook some steaks on the grill, enjoy the backyard and relax, just like we are on vacation. On Sunday we are planning to take the boys on the East Troy Railroad. They are going to have a ball! I will make sure to post pictures for everyone to see. Monday we will be going to a barbecue at Lydia's- the boys are already counting down the days!!

Next week we are going to be seeing a Neuro-Otologist and a Psychiatrist for Tom. I will post an update after these appointments.

Tom Update

Tom did great with the ENG today. We found out that the inner ears are not the culprit of the problem. We did find out that he has some eye movements that suggest an abnormality of the brain. We had thought that a tumor had been completely ruled out however with his symptoms and the test results that we had today the word was brought up again. Turns out his original MRI was only done on the brain and did not include the brain stem. We were referred to another Neurologist and also a Neuro-Otology doctor. They will do additional tests and hopefully rule out a brain stem tumor. We will also go back to the ophthalmologist again next week to see if he has any thoughts about the eye movement. At this point we are trying not to get ahead of ourselves and start worrying about everything but your positive thoughts and prayers will be appreciated. I will post another update when I have one.

Quick update...

We spoke to the pediatrician on Monday. We decided to take Tom off of all of his medication, it does not seem to be making any dent on him getting sick and it may be affecting his behavior. Tom will see a psychiatrist at the end of the month and it will be important that he is non medicated for this appointment. We have an ENG scheduled for tomorrow morning. This will rule out whether some of his problems could be due to an inner ear problem. The audiologist said that it is a pretty grueling test to be done on a 5 year old. Tom has been brave through everything though so I hope he will do better than expected with this also.

Jack has been doing well with his potty training. We are not going to push him, just let him go at his own pace. Slow and Steady wins the race!!!

I just finished reading Wish by Melina Gerosa Bellows...in one day! It is that great of a book. I am excited to get back to the library to find another great book. I forgot how much I love to read.

Adam has been busy with work during the week and yard work on the weekends. We are trying to get our yard all set so we can enjoy the summer.

Tom Update

Here is where we are at with Tom right now...

Yesterday we had Kindergarten Orientation. I was pleased to see that some of the kids that are in Tom's kindergarten readiness class are also going to the same school for kindergarten. We spoke to the school psychologist, who we had already had contact with earlier in the year and she recommended a summer school program for Tom. We are also on the waiting list to go to see a doctor at the University of Wisconsin-Madison Children's Hospital. We hear she is one of the best in the country to diagnose and recommend treatment for autism. We should get an appointment in September or October. In the meanwhile we are hoping to figure out why Tom is getting sick so often. We go to an ear, nose and throat doctor tomorrow. We have various tests throughout the month and then at the end of the month we will go back to the GI doctor and then the Neurologist. We were told that he needs to be evaluated for Anxiety and Bipolar disorder as well. I am waiting to see what all of these test say before I want to take him to another doctor that will prescribe more medicine though. From what I am finding out childhood Bipolar Disorder is very controversial so I am going to have to be careful which doctors I choose if we end up having to go down this path. I will give another update when there is more to share.

The New Neibauer Family Blog

Hi everyone!

I was lucky enough to get this great website as a Mother's Day gift from Kami's family! What a great gift. I will be updating it frequently with information about what is going on with our family as well as sharing all of our photos. I will post an update after each of Tom's medical appointments so I don't have to email everyone individually. Please feel free to leave a comment with any ideas, suggestions or questions. Welcome to our website! Enjoy!

Welcome!!

Welcome to our little spot on the web. We will share photos and news about our family here, so come back often!

~ The Neibauers