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Oliver is having a good day so far. Struggling with some secreations and a little belchy but doing good. I am staying on top of his meds at any sign of discomfort because I know if he starts to feel pain he will have seizures and then we will be headed to Gillette. We need to be home now. I know that this is a great hospital for kids who have cardiac issues and transplants and other issues. When you have a kid with special needs who is a bit of a mystery already the best place to be is Gillette. The charge nurse has checked in with my a lot to makes sure that we are happy. I know I can count on the nurses here. They have been pretty good advocates. I am just looking forward to getting back to our doctors.

Surgery

Oliver is having surgery December 3rd at the U of M Amplatz Childrens Hospital. Not my favorite place but they don't do this surgery on little kiddos at Gillette. He is having a Nissen Fundoplication and an ERG (electroretinogram). We will be there for about 2-3 days unless there are complications. Oliver has been feeling really good the last month. He has been throwing up a lot more, that is why he will be having the Nissen. Since he will be sedated I called and ask that they examine his eyes really well. He does not like it when he is awake so he has never really had the best eye exam. The ERG hopefully gives us more information about Olivers eyes. I will be with Oliver during the day and John at night. We kind of have a routine with hospital stays now. We are waiting to hear about more nursing hours. Story of our lives. He was bumped up to 8 hours a day, now that he is on high flow oxygen and having more seizures he qualifies for 16-20 hours. We started having two new nurses alternate Sunday shifts so I could take the girls to church. The first Sunday I received a call at church asking me to come home. She quit after one shift. Oliver was not breathing well, supposedly seizing, and just pissed at the world.
The girls are doing well. Adina is still loving school. Cora has two teeth and loves blowing spit bubbles. Life is good!
The doctors are pretty sure that Oli has a Mitochondrial disorder. They are testing but who knows. He is our Mystery man and he is strong. We have tons to be Thankful for, three awesome kids who love each other and are super loved by us.
Peace~

Kimono cutie. Dressing up at the Childrens Museum.



Two cuties, one not so happy.


Decorating the tree


Cousin time with the greats


JUMP


Adina making her Lefse



Adinas Lefse, rolled out all by her. Cutest little piece of Lefse.

Oh Boy.

Oliver is in the hospital right now. This is just a quick post to give an update so the story is out there the right way. Oliver went in Wednesday because he was having trouble breathing and oxygen levels were dropping. We got in and his O2 sats were in the 70s (should be 98-100 for us, 92-100 for Oli). All lab work came back normal but they admitted us due to his oxygen issues. They had him on 24 hour EEG and of course he had no events. We were going to follow up with one of the doctors to figure out why he was having episodes where he would turn blue but they sent us home. I was very defeated Friday because we did not resolve anything and I was frustrated that the doctors didn't really seem to believe me that it was happening. Oh well. Oliver was happy Friday night and laughing and playing with his sisters. He went to bed and ten minutes later had a huge seizure and another and another. We gave him his emergency meds that always stop them but this time they didn't. I called and they said to get in asap. Back to the Regions ER(because Gillette doesn't have an ER) and transferred to Gillette PICU. Thankfully they saw his episodes this time. I obviously was not happy it was happening, but happy they saw it. The PICU doc and neurologist and many nurses saw the multiple seizures and oxygen desats. Sometimes when the doctors don't actually see it happening they don't really believe it. So now we try and figure this out. Is he dropping O2 because of seizures or is there a change in his brain. He will have an MRI tomorrow that hopefully gives us some answers. Here are some pics of hospital stay and other random things. We will let you know whats going on. I didn't proof read this, I'm tired and Johns not home to do it. Sorry for any typos.

Adina misses her brother, she has been snuggling him up big time. She was about to go trick or treating but she needed to play a game with Oli first.



Halloween party at Gillette. Who knew being in the hospital could be so fun. It is the best hospital ever!


Oli all hooked up to the 24 hour EEG. He is so cute. This was the day before he crashed.

Cora and her new cousin Arne. She looks like a giant next to the little guy. Cora is now 4 months old, Arne was 6 days old in the picture!



Cora getting her first taste of food!


Halloween is a month away but Adina wears Snow White everyday.


Snuggle time.


Adina and I went to the Wild Rice Festival and she helped make apple juice!



Sitting pretty.


First day of preschool!


Adina is really the only one who can consistently make Cora laugh.

So Fast!

The time is going so fast. The more kids we add the faster time goes! Life is good here, Coraline is now three months old. She was baptized at Luther Seminary. We had a private baptism with close friends and family and Aunt Mary did a beautiful ceremony. The day was perfect. She is growing fast and is really trying hard to roll over. Adina tried to give her away to her aunt and uncle last week, but most of the time she still likes her! Oliver continues to laugh when Coraline is crying.
Adina is counting the days down until she turns four. Her Golden Birthday! She has invited just about everybody to her party, even a bunch of random people we don't know!
We moved again! We have to keep up our yearly tradition of moving. We are in a duplex and it is perfect for us. We have privacy and quiet. Also, central air which Oliver needs more than ever right now. Oliver is having a difficult time regulating his temperature. When he gets too hot he spikes a fever and when it is a little too chilly his temp drops. We saw an endocrinologist and he said it is most likely hormones being out of whack. Another round of tests to come. The part of Oli's brain that is missing is right in the middle of the brain. This is also where the pituitary gland is which controls some very important hormones. There is a concern that perhaps his pit. gland is not functioning right since this is where the brain malformation is. Oliver has not grown in over 6 months in height or weight and this is also indicative of hormones maybe not in balance. He is having a sleep study in September. Because his oxygen levels drop constantly and he has required much more oxygen use. Oh yes, he is also still not sleeping past 10 or 11pm regardless of the adult dose of sleeping meds. He will spend a night at Gillette Hospital hooked up to a whole lotta stuff. There are many possibilities that may come of this. Surgery, more oxygen use, a CPAP machine, more meds, etc. We will let you know. We have also applied for more nursing hours. We looked at the states tool for determining hours and Oliver SHOULD be getting 70 hrs a week. He gets 35 hours. The people that makes these decisions suck. Especially when we hear of others getting more hours and having fewer issues than Oliver. This makes them (state workers) suck more. Also, I question why Gov. Tim Pawleny(T.paw. as John calls him. I call him something else) turns down money for health care but will spend millions on buying land for a state park. Things like this affect ours and many other disabled children and adults nursing hours. Not to get too political, but John and I get very upset by news like this. We will most likely be rejected for more nursing hours the first few times, but we will fight it!
Oliver continues to bring joy to our lives everyday. We hate getting pity from people like our life is tragic. We are happy, Oliver is happy, Coraline and Adina are happy.
We will let you know how the future tests go. Oliver is so strong! He is the strongest little man I know!!
Adina starts preschool next week and is so excited! She and the other kids at school will be getting their backpacks blessed and ready to go next Sunday.


Cora's beautiful baptism gown made by Grandma Hanson. A talent that unfortunately did not pass through the genes! We love it mom!!



The Klawiters


The Hansons


Kali Rose saying hi to Oli Bear.


Coraline's Godparents, same as mine. Mike and Vicki (Vicki Mouse is what Adina has named her.)


Family Pic.



Chillin in the bouncers.


No more monkeys!! Taking a break from moving for a little bouncing fun. You're never really too old to jump on the bed!!


John all dressed up for his first day preaching at his internship site. He has preached a bunch already, but this was his first time in his clergy collar.


Adina playing dress up with Cora.


Looks like John passed down his dancing genes to Adina.

Oliver loves Raspberries!

Two months!

Coraline is two months old today and it has gone oh so fast! Sorry we have not been updating as we should be. Coraline continues to be our little miss mellow and it is great! I think she is still trying to figure out what kind of family she came into! Oliver is in love with her and still thinks it is funny when she cries. Adina likes her but wonders why she can't play more.
Oliver is doing well with his regular ups and downs. We went to Hoffman over the 4th for some central air and quiet. Our apartment living is no longer working. Oliver's sleeping issues have made it impossible to live here. It is so loud and he wakes up to the slightest sounds (and stays up). It has affected our entire family as none of us are really sleeping, including the kids. We need a quiet space and are looking for a house to rent that is in our price range and that will meet the needs of a special little guy. Not an easy house hunt. We have added some new doctors to the list. Oliver saw a sleep specialist who is AWESOME! He understood our situation, not many people really do. Oliver only sleeps about 2-4 hours a day and no I am not exaggerating. We are trying new meds and also using Valium during the day for his severe irritability. So although it is not cost effective to rent a house we have become desperate, the body can survive with little sleep for only so long.
We are also seeing a palliative care doctor to deal with the irritability. Endocrinologist because Oliver has stopped growing height wise, and a respiratory specialist because he has been having some breathing issues. So it has been a busy two months of doctors. Oliver manages all of this better than anybody could. He is the strongest little two year old in the world, he just shows it in different ways. He makes us smile everyday just like our other kids. We continue to struggle with people giving us pity, there is nothing to be sorry about, Oliver is the best. Adina is now becoming a little possessive of who does his stretching, she wants to do it all with him!
Adina has successfully learned to ride her bike with just two wheels! With the help of her cousin Charlie and aunt Martha she is now cruising! We also just signed her up for preschool for the fall! I think I am going to have a very hard time dropping her off that first day! She is very excited and can't wait to buy a new school bag, but has already decided that she does not really want to eat a snack there. She has a weird quirk about eating in around a lot of people.
John starts internship in one month. We have been really enjoying his time at home and just having the summer spending lots of family time. It's the best!
Coraline will be baptized this Saturday, pictures to come eventually.

Bath time!!


Coraline is One month


Sleeping with my bear from Uncle John and Aunt Gail


The 3 on the 4th


My cool sunglasses


Oliver and Cora holding hands. That is Coraline's famous, "What the heck!" face.


Gillette Hospital had their St. Paul Fire Dept. festival. This is where Oliver has many doctor and therapy appts. They do so much to include the family and siblings. Adina and Oli got to play games and meet some famous people, like...


Miss Minnesota! Adina was more interested in the games.


T.C. the bear!


Cheese!


Two months!


Listening to guitar. Oliver loves listening to papa play the guitar. He sings along!


Adina and Oliver in their 4th of July outfits.


Adina helping her brother do some stretching exercises her own way! He liked it.


Next time we will post pictures of the bike riding and baptism. Happy hot summer!

Midnight Meeting

Oliver and Coraline are tag teaming us at night! Oliver is sleeping worse than ever, not because of the baby but because that is just the way it is. He will be having a sleep study in a few weeks. Also, another big eye appointment and I am praying for good news! He will have Botox injections in his legs soon to decrease some of the tone so he can stretch better. Busy month for little man. He is doing really well with Coraline, they will coo back and forth. John gets up with Oliver at night and I get up with Coraline so we usually have a midnight rendezvous several times a week! Unfortunately they are not extremely romantic as we are feeding the babes and not lookin so good! We laugh about it often and John now says good night saying, "Good night and Good luck!" Here are the pictures the hospital took of Coraline. I hope this link works for you.
So far we are all doing really well and loving our now family of five.
As John would say,
Good Night and Good Luck!