Santa is coming!!

Adina was so excited because Santa was coming to the building and she was going to sit on his lap and tell him everything she wanted. Here is a play by play of how it went down...
1. My pretty dress is on to see Santa!




2. Let's Go!!!!


3.Whoa! There is Santa!



4. I am going to stay with daddy, but why is he getting so close!





Okay, I will sit in Santa's lap............


GET ME OUTTA HERE!!!!





Whew, at least he gave me some candy..
The next day Adina was telling me all about Santa and claimed she was not scared at all!

Happy Thanksgiving, a little late!

Happy Thanksgiving Everybody. I thought it was finally my turn to write a little on the blog and give some updates. School is going well for both of us, but we are definitely ready for our Christmas break. With all of our doctor appointments plus the added school work it will be nice to sit back and watch movies for a few weeks instead of sitting in front of the computer. We don't have any pictures of Thanksgiving Day, we were a little lazy with the camera, but we had a nice day. We had originally planned on going to Owatonna for the day but my dad took a much needed vacation to California to see my grandparents. So instead we stayed in the cities and brought some food to Scott and Kara's and celebrated with Taryn's side of the family. Our new niece Kali slept through it all!

Taryn's folks stayed with us since Kali was baptised that following Sunday and we took advantage of the babysitting. We took Adina to the Como Zoo and put up the tree. Oliver could definitely see the Christmas lights, we might have to keep our tree up all year! We were sponsors for the baptism and I got to preach for the first time--it went well and I had a lot of fun.

Not many new updates as far as doctor visits go. Oliver had his six month appointment (one month late)--shots!!! He is gaining weight and getting taller but his head has not grown at all in three months. We were not shocked as the neurologist told us this would be the case, but we had a little hope of some growth. We are going to see a new GI doctor in a few weeks and are still waiting for all of the genetic tests to come back. It is all a waiting game. We will continue to post updates. Here are some pictures of the zoo and Oliver looking at the tree. Also, Taryn blowing out candles on her birthday Cheese Cake that I spent hours preparing from the box!

Therapy Chair?

Some pictures of Oliver and his fancy therapy equipment.

Dancing

We went to a wedding in November and Adina had a blast! We thought she would be too shy to dance, we were very wrong! She was out there with a few others her age having a blast! Also, here are some pictures of Adina snuggling with her brother and an after the bath wardrobe.

Kali Rose

Here are the promised pictures of beautiful Kali Rose. She is such a little peanut!

2 Steps Forward, 4 Steps Back

Weekly update... The great news is my sister Kara and her husband Scott welcomed their beautiful little girl Kali Rose into the world yesterday (Nov. 18) and I got to see it all! My sister was a rock star and Scott was a loving supportive husband. Kali is a beautiful baby with a full head of red hair, I will post pictures soon.
Oliver's report is as stated, two steps forward and many back. That is how I am feeling tonight anyway. We started therapy and have a fantastic team that we meet with. Occupational Therapy comes every week, sometimes twice a week, and they come right to our house. We have the best therapist and Oliver was full of smiles for her on Monday. She is teaching us some methods right now on how to calm him down. Did I mention she is fabulous? Our team includes our OT, physical therapy, special educator, family service coordinator, I believe a speech therapy will be added, and a few others in the mix.
Today we were hoping for more good news, but we hit a few bumps, hill, mountains... First we saw the ophthalmologist. We kind of thought that Oliver might be seeing a little more, but after the appointment I think it was wishful thinking. She did not see any significant change in Oliver's eye sight. When all of the lights were off he would follow a flashlight, but with the lights on there was nothing. She said it will be a wait and see, yes we get this a lot. We will see her again in three months for another dilation test. I asked if there was anything that we could do right now for Oliver to help him and she said right now she does not feel he is making the connection to see much but not to give up hope. We aren't, but it is not always easy. Sometimes I try and ask God, "If you could just give me one little sign that he can see, let him grab for something today, Please?? ARE YOU THERE!!!!" I know, it is silly to try and bargain, Oliver will be what he will be.

From the eye doctor we went to the stomach doc, thinking that at least this issue we can resolve. Oliver needs some relief from this constant throwing up and gaggin. No such luck. The doctor who I am not too fond of anyway, kind of gave us the brush off. I will not explain it all, but at our last appointment he said surgery would be our last effort to help Oliver. At this point we were ready, he is clearly in pain right now. Today the doctor brought two students in and they were more interested in his neurological condition and quizzing me about it saying, "How interesting." I said, "Yes, but what can we do for Oliver's tummy?" They said try cereal and we will see you in six weeks, apologized for not being able to help and left the room. My jaw is still on the floor. I don't know how you go from he needs surgery to, try cereal. I would love it if cereal would do the trick, but he needs something more. I caught one doctor and asked why the change in plans. She said they read ONE study on how kids with these brain issues don't need the surgery like others do. They could not remember what study it was though. I guess Oliver is just too different for them. We will be calling a new doctor tomorrow. I would love to tell you some of the other things these doctors said but reliving this visit only makes me upset. Last night we listened to little Oliver sit and cough and gag for an hour before he finally stated to cry, he is hurting and there is nothing we can do to help, it is a terrible feeling.
We are starting to see that there are stigmas with special needs children and in this short time we have already had many stares and comments. Yes it looks like Oliver is "normal" but he can scream like no other, and does everywhere we go. People like to tell us everywhere what we are doing wrong. So far I have only given smiles and "hmm, thanks for the advice, I will try that." What I really want to say is a whole lot of beepity beeps, but what good would that be.
Sorry for the ranting on and on, but I just needed to have a moment. We still really appreciate everything that everybody is doing for us. Thank you a million times over. We are so lucky to have the best family and friends ever.

Update

We don't have any news this week, just a few more appointments to keep the trend going. Today we have another stomach test, a UGI. Wish us luck! More tests that I am sure will be very uncomfortable for the little man. Hopefully they give us some good answers on what is going on in that little stomach of his. Next week we go to the geneticist, eye doctor, and have his final meeting with his therapy team to set up the schedule. Hopefully we will have some news for you next week. We still continue to be amazed at how wonderful and helpful everybody has been. THANK YOU again and again. Those letters, emails, calls, and knocks at the door always seem to come right at the perfect moment. I have added a good picture of Oliver where he is actually not screaming! Also a video. Check out that skill! We were so excited to catch that right when I turned the camera on. He has only rolled a few times, but when he does we celebrate! Also, scroll down to check out the Halloween pics. In between is a poem I added. You can skip it or read it. I have read this many times since we found out about Oliver and thought some of you may also enjoy it. I still get tears when I read this.

Welcome to Holland

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

CANDY!!

Adina discovered how wonderful Halloween is, FREE CANDY! We went to our friends house (also Adina's daycare) and had a blast going from house to house. Matt's parents were also there and offered to watch Oliver so we could go out with Adina, Matt, Danielle, Brayden, and Cole. It was great to be able to have that time with Adina and not have Oliver screaming through it all, which he would have done. (Thanks Matt and Danielle!) It did not take long for Adina to figure out the magic words, "Trick or Treat!!" After filling our bucket (two times) we went in for a yummy meal Danielle made. Adina put on her pajamas and played with the boys. She thought it was pretty cool that she got to play with them at night! Here are a few pictures of the night.

Chromosomes

We talked with Oliver's neurologist today about the results of the chromosome analysis. The study found that he has an anomaly on chromosome 7 and his X chromosome has an extra arm. What this all means I have no clue. One of the many next steps is to see a geneticist (all three of us). They will tell us what this means for Oliver. John and I also have to get blood work to see if this is something that we are carriers of or if it was just some random thing. The neurologist found a university that is researching this right now so John and I will not have to pay for our genetic tests. They are very expensive so I guess this is a good thing.
Oliver also had his gastric emptying test yesterday, which was a huge disaster. They said if he were to vomit at all during the 90 minute test we would have to stop. I told them he most likely would, he usually does. Forty minutes in he barfed, very predictable. The woman said next time they will have to insert a G-tube. I informed her there would not be a next time. Yes I was a little crabby, but I can't see little Oliver go through that again. I should have asked for a refund! Wonder if it would have worked =) So, that's that. Still waiting to catch a break sometime soon.

Walk in the forest and the greats!!

A few weeks ago we went to visit grandpa and grandma in Hoffman. While I was there I took a walk in the woods. I call it "The Forest!"
Then we came home and my great grandparents from California came to see us. We also celebrated Grandpa Dave's birthday. I helped make his cake and blow out the candles.
Oliver loved being held by great grandpa. I don't know when I have seen him smile so many times in such a short period. He really loves his great grandparents! Mommy also tried to take a cute picture of me holding Oliver because in most of our pictures Oliver is crying. Nice try mommy, as you can see it didn't work.

Blueberries!

Adina loves blueberries and Oliver loves haning out. (And yup, our house is a mess!)

Overwhelmed!

Another day of appointments over, whew. A member of the family service team came today to set up, or at least start setting up therapies for Oliver. She was so great! We have another appointment with her next week where a team will come to evaluate Oliver, this is all done at our house! It is so great that we have services like that, and they are so supportive.
This afternoon we had a GI appointment because we thought Oliver had GERD. Now I don't really know if he does. He was a very confusing doctor but luckily he had a student with him so he would talk to me and I would look to her as a translator. What I got from it was him mumbling Oliver doesn't have GERD he probably has ------ (something I didn't understand)and is most likely going to need surgery. So we had X-rays today, another test next week (UGI), and the following week a Gastric emptying test. I am usually better at asking them to explain things in more detail, but as the title reads, John and I are overwhelmed with all of the news.
Adina is taking this all so well. She always wants to come to the doctor with Oliver, probably because the toys are so cool! Today she sat across the receptionist for about ten minutes and told her a long story about "Oliber go see doctor wobison." She thinks all of the doctors are named Dr. Robinson. Most of what she says is in her own language, but some things we can pick out. I don't think the receptionist got much work done with Adina in the office. Adina will hold Oliver's hand and say, "It's okay Oliber, I here." Kids are amazing!
So thats the news for now. This whole experience has been such a roller coaster of emotions.

Some good news!

Finally some good news!
Oliver had an EEG last week to determine if he is having any seizures, which is very common with what Oliver has. His EEG results came back with normal results and so far no seizures. Of course they can start later, but for now we are clear! It was so nice to get good news. The doc is still confident his vision will develop slowly so we are holding onto that. It does seem as though he is tracking a bit more and reaching for toys!! Amazing how excited we get for the smallest things, I think we under celebrated them with Adina.
We are still waiting on the blood results that will tell us if there are any syndromes associated with Oliver's ACC (agenesis of corpus collasum). Often times there are, but not always. Hopefully it will be more good news. We will let you know when we find out, but be patient (grandma) as it may take a few weeks =).
We have an appointment Wednesday to set up therapies and also that day, an appointment with a GI specialist. Oliver has GERD on top of the other stuff, I feel as though this is all never ending.
Today the doctor gave us some new medication to help Oliver sleep (mommy and daddy too). We only get a few hours a night and usually in a rocking chair, hopefully this will help. Our nights are like having a colicky newborn baby who screams for hours, now take that times 10. I guess this is also common with his diagnosis. We are about to try the meds! Wish us luck!
We will update you with news. Happy sleeping, I hope!

Oliver Update

Hi everybody, I feel that I should give a quick update as to how little Oliver is and the news that we have. On average we will be having about 1-3 appts. per week for the next few months. It is overwhelming but we are trying to make order of the new schedule. We met with a pediatric neurologist last week and he was wonderful at clarifying everything for us. He will be following Oliver for years to come. (Thanks again Sandy for finding him for us!) Anyway here is the recent news-
The part of the brain that we thought was partially there, the Corpus Collasum is actually not there at all. It just failed to develop for some reason. Also, the Hippocampus, which is sort of the memory box of the brain is also very underdeveloped as well as the whole outer portion of the brain. So his brain is smaller than average which also means his head is and will be smaller than average. The neurologist said that with these findings it is likely that we are facing moderate to severe developmental delays and challenges. Naturally this was very difficult news to receive, but now we are focusing on what we can do to help Oliver reach the fullest of his potential. We are getting connected with the school district who has a birth to three program paid for by the state. They will provide speech, physical, and occupational therapy and they come right to our house! Tax dollars at work! The neurologist also stated that he feels that Oliver can see, he just isn't yet making the right connections in the brain. He is very positive that this will develop just at a much slower rate than most. For that news I wanted to jump out of my seat and say YIPPEE! Thought the Doc might be a bit frightened so I restrained. We are going to grab at every positive thing we can. Next for appts is meeting with the school to come up with a treatment plan, EEG to determine if Oliver is having seizures which is very common with this, and waiting on many lab results to see if Oliver has any accompanying syndromes often associated with this. The labs may also tell us if this is something we could potentially pass to future children or not and how great that percentage is (hopefully very small). I do believe that I hit everything but will continue to update on this blog when we find out more in the next few weeks. We have an appt. on the 20th and we will find all the results from the EEG and hopefully blood as well.
We have had a lot of questions from people wondering if his brain is something that will develop in the future, a question we had as well. Unfortunately it will not, but to us little Oliver is absolutely perfect in every way.
John and I are continuing with our studies. We have had a lot of help with the kids in order to do this. Because of the fact Oliver may be having seizures or will in the future we were told that he needed one on one care. We have the best daycare in the world!! and she has a great way with Oliver but, if he did ever need to be rushed in he needs to be one on one. Grandpa Dave is coming every week in between his very busy church schedule to help us every Thursday. This has taken a HUGE weight off of our shoulders! (We thought we were going to have to hire somebody) Oliver loves being with Grandpa, I came home from school on Thursday and Oliver and Grandpa were fast asleep in the chair. Anybody that has watched Oliver knows that this is not the easiest task in the world.
Sorry this was much longer than I had anticipated. We are continuously amazed with all of the support we have received. Words cannot explain how much it has lifted us both and it always comes at the perfect moment. Thank you SO much! I will try to keep the next update shorter =)

Birthday Time

I had a Birthday last week, here are a few pics from the party!