The Klawiters

Home is Good

2012-01-16T00:26:00.008-06:00

Christmas and New Years is over and I have to say that I am glad! Due to the med shortage we had to keep Oli in the hospital until he was safely transitioned off of the "good stuff", on to the "it will have to work" stuff. The first few days were the worst for Oliver. We made it to Christmas Eve services at a lovely church right by Gillette. The nurse that was taking care of Oliver that day, who is a FANTASTIC nurse, kept me updated via text. People came and prepared meals at the Ronald McDonald house and we made it a perfect Christmas. Adina created a sign for Oliver's door that said, "Santa stop here!" She was very worried but Santa did stop. Gillette gave each of the kids amazing gifts and we brought some from home. Adina wanted to wait for all of the gifts until Oliver was home so we only did a few. We took Oliver home on a 24 hour pass (just enough time for Santa to come to our apartment with the rest of the gifts) to see how he would do and he needed a few more days at the hospital so New Years party also took place in the PICU. We did have a party! We made the best of it and made some silly memories too.

Adina is back at school (YAY!). She had to post a wish for the New Year at school. A lot of kids wished for toys or pets, the normal kid stuff. Adina wished for her brother to not have any more surgeries at hospitals. The other day she told me she always wishes for that on the wishing star but it just won't come true. It breaks my heart and sometimes I feel like she is missing out on just being a care free little girl. A few days ago Oliver was having a significant amount of pain. Adina sat and rubbed his legs and said, "don't cry buddy, sissy is here now, I will stay with you until it's better." Cora, feeling like she too should help, grabbed the thermometer and tried to take Oliver's temp. Last time I checked the eye ball is not the best place to take it. The girls love their Oliver. I guess this is just normal for us. Adina has no fear of the vent tubing or alarms. She just fixes it.

Hope you all had a very Merry Christmas! We are looking for nurses to fill some open shifts at our house so if you or someone you know is interested let us know! Needs to be RN, preferably some IV and vent/trach experience but we can train.

Brother time.

Santa came to Gillette. Cora clearly was not a fan.

Volunteers came and made Gingerbread houses with the kids.

Oliver in his chair having some play time.

Adina loved her Bitty Baby American Doll from Santa (Gillette). Thanks!! We were all amazed!

Merry Christmas!

Oliver liked this noise maker.

The kids just hanging out all together.

Adina helping Phin with his stocking. I guess baby wipes are exciting!

Phinneus..AKA...The Chunk!

Adina put cookies out a few days late but Santa still came. Santa is kind of a sucker for cookies!

Party Time

Cheese!

Lights out, glow sticks on! Oliver loved the lights, who says you can't have a party at the hospital.

Happy New Years!

A whole lotta action

2011-12-20T07:07:00.005-06:00

A lot has happened in the last few months and I have not had a lot of time to post. About six weeks ago Oliver was in significant pain, we happened to be at Gillette for another appointment at the time when Oli had a wet diaper and we realized he was passing stones. A whole lotta stones, which would explain the high level of pain. They did an ultrasound and his bladder was full of sediment. So now we cath Oliver if he holds his potty too long. We were hoping the pain was resolved at this point but Oliver had some more going on. He had been passing some blood from his tummy which we have been managing from home but the amount kept increasing so Oliver went to the hospital for a quick five day tune up. They scoped him and found small erosions in his tummy. They figured it was a mechanical injury from his extreme movements. His G-tube was scratching his tummy causing it to bleed so they did a quick procedure and put in a different tube. This will cause less damage when he does have his crazy man action going on. So, now we are home preparing for Santa to come. Every time Adina is being a stinker I just have to say, "oh, I'm calling Santa!" Works every time! We will milk that one until she figures the whole Santa thing out! Do not worry, all of you who do not believe in teaching kids the magic of Santa. She knows the whole Jesus part of Christmas too but kids are only kids once.

Unfortunately, it looks as if we will have another hospital stay this week. Oliver has two meds that run through his IV continuously for pain and irritation. One of those meds is Versed. We were running low on our supply over the weekend, which rarely happens, because the pharmacy is so on top of things. I called and we learned that there is a nationwide shortage of that drug and all of the drugs in that family. It is a drug that cannot safely be stopped abruptly because of withdrawal and there are no other IV drugs to switch to because they are all out as well. Our safest option is to bring Oliver to Gillette to safely find an alternative where we have doctors that know Oliver well and can help quick without making many phone calls. It is just life and now we are thinking of ways to make Christmas just as special if Oliver is still in the hospital. We will be figuring this all out on Thursday as we have enough meds to get us through that day. We are so lucky to have such great resources for Oliver. His Gillette team is amazing and the hospice team have all become special to our family as well. The kids got to see Santa at Gillette and decorate Gingerbread houses. If you are ever questioning if there are genuinely nice people left in this world go and sit in the waiting room at Gillette. Everybody that works there is really a special kind of person. It is the one place that we can go where people see Oliver in his chair and say, "What a cute little boy!" Usually people see him and do the pity thing, which gets old. All kiddos are treated this way at Gillette, it is a safe place.
Kids are all doing well. Adina is on a LONG two week break from school. Cora has learned that hitting big sister is fun. She is also learning a lot about the time out corner. Phinneus is two months old and is one easy baby! Oliver is happy and has been playing on the floor with his siblings a lot!
Sorry for the mother load of posts. A lot has happened the last month. We hope you all have a peaceful Christmas, Hanukkah, Christmauka, Kwanzaa where ever you are.

Our many attempts to get all four kids to smile nice for Christmas pictures!

Adina loves to take pictures, usually of her foot. This is one of my favorite pics of Phinn!

Bummer

2011-12-10T22:20:00.003-06:00

We had a good few months and managed to stay out of the hospital but we hit a bump or two. A month ago we realized Oliver was having pain when he went potty and then he actually passed some sediment. They tested it and realized Oliver had kidney stones, OUCH! That explains the pain. We had a few appointments and are managing that, at least we were managing all from home. Then Oliver had blood from his tummy that kept increasing. He is at Gillette PICU trying to figure this out. Of course we get there and it stops!! It is more frustrating than I can say! I will post more soon but wanted to let everybody know. Now the balancing act of staying with Oli and getting the other three back and forth!! Sorry for typos, didn't proof this one.

BOO!

2011-11-04T21:56:00.009-05:00

The kids painted pumpkins, Oli did a pretty awesome job on his. I helped him hold his brush and then we tied it on and away he went! We had our own little family party the day before. We cranked the Halloween tunes and had a blast. Oliver is quite the little party animal.

A skunk, pumpkin, pirate, and the Queen of Hearts all in one house. Oliver had a lovely hook assembled by one of his nurses out of tin foil. He laughed when we put the make-up on and smeared it right after. Stinker!

Phinneus all snuggled up in his blanket from Great Aunt Gail and Uncle John. He loves it!

Oliver is doing so well we were able to use his stander again! He was working so hard he had to wipe his brow! We have not been able to use this since last spring but Oliver is in rock star mode and showing everybody what he is made of.

Hope you enjoyed the pics. We had a fun family party and went out Halloween night with the Choudoir family as we have done for the past few years. It was a blast! Oli is doing really well right now. I am almost afraid to talk about it but I will. He has gained another whole KG in just one month. He had an Ortho appt and his bones have become very fragile meaning we have to be very careful when moving him. He is at a high risk for fractures and breaks. This news was not unexpected. He has been one happy little man and we are enjoying every second of it knowing how fast things change. We also all survived our first cold of the season and managed to keep Oli out of the Hospital. Life is good!

Brothers!

2011-10-29T20:01:00.009-05:00

Here are the pictures I promised of the Klawiter Brothers. Oliver loves Phin, at least he loves it when he cries. He seems to enjoy when his siblings are upset and crying. Typical big brother I guess. Oliver loves when Phin snuggles with him, he is very curious and becomes very still. Oliver is not a still kind of kiddo. Everyone is adjusting well, we are just getting used to a new kind of crazy. The biggest issue is that we have had some nursing shifts open that didn't get covered in time. It is a juggling act to maintain all of Oliver's vent and IV stuff with a newborn but we made it.
I know many of you are wondering if Phin is okay. As far as we know he is fine, just like all of our kids. Oliver is perfect in every way so if we are comparing him to Oli or the girls yes he is great. We have the option to do an MRI to see for sure but John and I both agree that the risks of the sedation are not worth it. If Phin starts to show signs then we will do it, but for now we are just enjoying our kids. I would be lying if I said it didn't cross our minds that it is a possibility. This is the official news as far as that topic goes. If we ever do learn something we will tell you all, so stop worrying.
Happy Halloween! We will have some pics of that I am sure.

Oliver checking Phin out for the first time. These are some cute brothers.

That's a lot of toes!

Our first attempt at a family pic with all six. Not sure I would say successful!

All four kiddos, don't the girls look thrilled?

The boys alseep in their chairs, life is good.

Phin sleeping and snuggling Oli's hand.

More sleepy boys living the life.

It's A Boy!

2011-10-18T14:19:00.006-05:00

Phinneus Tyrone Klawtier
October 17th, 2011
11:33 A.M.
7 pounds 15 ounces 21.75 inches
Adina and daddy picked name. Middle name after Grandpa Tyrone Hanson

I think he looks just like daddy! Cute as can be.

Proud sisters, tomorrow he gets to meet his awesome big brother!

Proud mommy and daddy!

Silly sisters.

More pics to come tomorrow of the brothers meeting!

5

2011-10-15T20:53:00.007-05:00

Adina finally had her Birthday and is now a big 5 year old! She had her party at the Eagles Nest (huge indoor playland in New Brighton) and all of the kids had a blast. Adina does not enjoy attention, so eating, the Happy Birthday song, and opening gifts was painful for her but once they got to play life was good. I think all of the kids slept pretty well that night. Cora is doing well, she thinks she is five. Everyday we drop Adina off at school she also tries to walk into the class and is very unhappy when we say no (she even took one of the nametags of a kid who was absent and tried sticking it on the door). Oliver continues to be our stud muffin. As we keep increasing his feeds, we are pleased to know that he has gained almost a whole kg, a little over 2 LBS! Way to go Oliver! He really is so amazing.
Baby will be here on Monday the 17th, assuming he or she waits until Monday, (a little more then a day) I will be induced. Life is good and busy as it is for everybody right now. We are busy getting all of our Halloween costumes ready. We have fantastic nurses that work with Oliver and they are all like family to us. They deal with our craziness and love Oliver so much, we are incredibly blessed and life is good. We will update Monday with the news of number four. More craziness to come!!!

Oliver in his rock star skull headband. He will be wearing this for Halloween. He will also have a Mohawk, we have been patiently growing it out.

Adina making a candle at the Renaissance Festival.

Cora and Adina by the fire truck at Falcon Heights fire station.

Cora sitting on her favorite seat, the baby! Also, she has discovered the art of picking her nose. Yes we are proud parents!

Adina and cousin Charlie at the Eagles Nest on Adina's 5th Birthday.

Cole, Brayden, and Adina at the party. These are Adina's good pals and possibly a future husband. There have been proposals!

Auntie Martha, cousin Arne, and Uncle Dude (Mike). I love this picture!

Cora admiring herself.

Adina finally gets a two wheel scooter. First trip out she flew off the sidewalk and got a pretty sweet knee scrape. She did not find it awesome at all.

Adina's ice cream treat from her small celebration.

Cora's grumpy face.

Aug/Sept

2011-09-24T21:20:00.008-05:00

Life is good in the Klawiter house. We are finding a new groove for fall and getting used to John being home more during the day. We are all loving it, but I am reminding myself that it is only for one more year. After John finished his internship we crammed as much summer as we could into two weeks and now we are cramming as much into the weekends as we can before baby comes! John is enjoying his classes and somehow finds time to play with the kiddos a ton and get all of his work done!

Coraline finally decided on her own to walk. She is very stubborn! I really don't know where our children get that gene! She is 16 months going on 5. She will try and walk into Adina's class room at school and gets mad every day I drop Adina off because she wants to stay with all of the big kids. Adina started preschool and is loving it. John and I are also enjoying the five day a week schedule although I do miss my girl! Last year I had to peel her off my leg and run out of the classroom the first week of school. This year she walked right in, I kept looking in hoping for one hug or wave, but she was little Ms. Independent!

Oliver is doing really well. We will always have our daily issues from nurses calling in, to calls to and from clinics, to a lot of pain and not knowing where it comes from, med changes, etc. We just deal with it the best we can and life goes on. Oliver has been happy and laughing again and playing with his toys. It melts my heart every time he looks at me with those beautiful eyes and big smile. He is awesome! Two weeks ago he had a quick surgery but recovered really quick! Now we just wait and see what happens during viral season. Oliver's main struggle right now is his movement disorder. We are trying to find the best medication to help calm his movements but struggle to find the right cocktail. It is times like those that I wish we could figure out his true diagnosis so we could know the best way to help. It might seem hard to understand this, but at times I honestly get jealous of other families that get a real diagnosis for their child. Yup, I actually hope, pray, and wish for a diagnosis! I don't think this is in the cards for us though, so back to the motto of, "life is life," I guess. No matter what, Oliver is a stud and teaches us endless lessons about life without saying a word.

Baby #4 will be here soon! John and I keep reminding each other that it is actually going to come. We have managed to keep the gender a secret, Oliver is the only one who knows. John and Adina picked the name, Adina just doesn't realize that she picked it yet. She said the name and we liked it. I know I said it a few posts ago but we are asking that nobody visits while we are at the hospital. We love you all but will need a lot of rest and also want to limit the germ sharing that we bring home to Oliver. Thanks again for understanding. We will let everybody know as soon as it happens. I am hoping to be induced the 14th of October. If not that day, for sure the 17th. Stay tuned for #4!

Milking a cow at the State Fair

Cora looking corny

Cheese!

First day of school

Oliver getting love and smoochy-poos (kisses) from his sisters

Adina sharing her ice cream cone after the girls got shots

Cora working on the first steps

Adina and Dad looking at Flamingos. I guess they are trying to blend in?

July/August Pics

2011-08-23T20:44:00.008-05:00

Cora playing dress up. She would wear this all day if I would let her!

Adina running the bases during kickball at VBS.

Somebody found Mommy's make-up. Clearly not a future cosmetology pro!

Cora is the victim of Adina's dress up games.

The three cuties laying on Olivers make a wish gift. It is a massive vibrating bean bag bed! They all love to lay in it.

Adina: "Mom, Cora colored herself again!" Me: Hmm, how did she reach the middle of her back so well?" Adina: "Ugh, Mom.. Cora has really long arms!"

Adina "chillaxin" with Oliver. Yup, those are her words.

I decided to try my cosmetology skills and give Oliver a haircut not with the clippers. I had to get creative with positioning while I cut! Oli was giving me the "seriously mom" look! This is the before pic. Kinda getting a mullet.

After the cut. What a stud!

Quote of the week. We were sitting in the shade eating ice cream. I mentioned that it was a little chilly in the shade. Adina says, "Mommmmm, that's why they call it the shade." Amazing, four going on fourteen.

New Chapter

2011-08-20T20:24:00.011-05:00

A lot has happened since our last post, many times I have sat down to write but life gets so busy as you all know. It is hard to believe that state fair time is here, which to me signifies the end of summer.
We moved back to the seminary student housing the first week of August. We intended on staying at the property we were at for one more year until John was done, but the place was potentially selling and we needed stability for Oliver. So it's one more year in student housing and the seminary was very gracious and provided a living situation that will work for our special needs.
John finished up his internship with a week up in the BWCA. It was VERY hard to leave Como Park Lutheran. It is amazing after one year how that church became such a special place to us all. Adina is taking it especially hard that we cannot go back. We had such a crazy year with Oliver and the entire church was always there for anything we needed. They made getting through those rough times much easier. It was definitely an expansion of our family. This is what makes it so hard to say good-bye. We would love to stay in touch with everybody but the rule is that when internship is over the student and family should also leave. It kind of stinks because we will miss everybody but it totally makes sense. There will be a new intern at Como and now it his and his families time to form relationships within the church. We will miss you all! Thanks again to everybody at Como Park Lutheran for EVERYTHING! If anybody is looking for a church to join that is kind and loving and supportive and do a lot of good things, Como Park is the place!
John has one year left of seminary and then we are off to who knows where. A lot of people are curious where we will go and we are too. We will let you all know when we know anything. Obviously, because of Oliver's doctors, we'd rather stay in the area, but it's out of our hands.
The kids are all doing well. Adina (John and I) can't wait for school to start in September. Cora is 15 months and sassy as ever! We have decided that she is most likely going to spend half of her life in time-out. I also wouldn't be shocked if we got a few calls from teachers, principles, cops, who knows! The possibilities are endless! Yes, we have high expectations for our children. She is not walking yet, but she has taken a few steps. She is on her own timeline and no we are not worried even when people say, "oh... really?? not walking yet?" Nope, not worried.
Oliver is doing really well this summer. I have wanted to post about it but get really scared that if I do I am going to jinx it. We are two ounces away from full strength feeds which, within two days, he will reach. He has not been at full strength since last year! When Oli gets sick we have to go down on feeds but the fact that we are this close is AWESOME!! He is still considered Hospice status and still has a lot of health issues but overall he is great. We are trying to bulk him up a little before viral season. He still does not have a lot of extra reserve to fight, day by day is how we continue to go. He was approved for his new wheelchair without being denied once! Usually denial is the first step, at least with our experience. It will take time to get it and fitted but we are really excited! We still and always will get funny comments from people when they find out we have a "special" son. All kids are special in my mind. My new favorite was, "oh we were so worried when we got pregnant there would be something wrong with our kid. We prayed that it wouldn't happen." How I would LOVE to respond.."Guess you didn't pray hard enough because after spending time with you and your child, I can tell you a few things wrong." No I didn't say that, this time anyway. I know people don't know how to respond, I get that most of the time. I always know how I would love to respond. There is nothing wrong with Oliver, he is perfect and loving and normal.
That is what we have for an update in August. We are enjoying a few weeks of calm before John starts classes again and then the new baby Klawiter comes. Because viral season in coming we are going to become those hermits again to protect Oli. Please don't come to visit if you are sick or have been around sick people or even if you suspect you are getting something. If you have a butt itch that you think is contagious don't come over! (Also, get that looked at) I know it seems like we are being nervous nellies but we are just protecting our kiddos. When baby #4 is born we will most likely not have visitors right away, I know you all want to see baby but that will be the start of the V season. We love you all and want to see you all, please know it is nothing against anybody. Just keeping our Oli safe.

July

2011-07-12T09:23:00.005-05:00

Summer is already flying by and we finally have the hot weather to make it feel like summer. Oliver did get out of the hospital, I just didn't update after he left. They never did figure out if he was having seizures, so the mystery continues. We have had a really good month after the hospital stay. Yesterday we got the feeds to the highest they have been since before hospice entered the picture. We are realistically optimistic! Oliver's tummy has shown us many times that it will work really well and then shut down two minutes later. We would love to get him a little bit bulked up before the fall comes and the battle of the viral season approaches. Right now he does not have a lot in reserve to get him through a lot of sickness.

We thought his port site was infected so we went into Gillette expecting that we may be there for a few days, but the news was good. He has a little blister-like spot that looks super nasty but is nothing we need to worry about. We were so happy I could have kissed everybody in the room! I restrained myself, but am continually reminded that the doctors at Gillette are, in our mind, many steps above any other. Oliver has always been treated like a regular kiddo there. I don't remember ever getting the "pity look" from any staff there.

The girls are loving the weather and are both little fish at the beach. Cora will just crawl in and, so far, has no fear. Saturday we had a four hour period where we did not have a nurse. Since we have 24 hour nursing there are very few times during the day that it is just us. We LOVE our nurses and would be lost without them, but it was really nice to have a moment with just us. We hung out in Oli's room, he was on the floor and played Barbies with Adina. It was forced, but Oli didn't seem to mind, Adina even let him pick his own Barbie! We just listened to music and I tried to suck in every minute and tattoo it in my brain. We didn't go anywhere fancy, we were just together, happy as a family with a 4 hour break from everything.

Adina giving Oli a thorough exam

Barbie time

Cora likes to dress up

Kisses for big brother!

The girls both really love to be with their brother. Cora especially loves it when Oli is in his little chair so she can be right there. She also likes to crawl into the chair with Oli, unfortunately the chair is only made for one. Oliver loves his sisters! His all time favorite thing is the world is when Adina sits by him and plays with his arms and moves them to songs she makes up. He is happy and getting range of motion all in one!

By the way...It is that time of year again. Yes, we are moving again! We did not intend on leaving this house until John was done with school. Our unit is being sold and we need to have a solid plan. Not knowing what the new landlords will want to do with the place we are going to live at the Seminary until John is done. We need to have a plan because with Oliver we cannot just pick up and move to any place. What can I say, we are Nomads! We will just make the best of it!!

Still here

2011-06-19T10:21:00.002-05:00

Oli is still in the hospital. He has been pretty happy of course not having any "episodes." We will see hopefully soon when the doc comes if there was anything over night. Adina decided last night that Oli should come home now. He holds a very special place in both sisters hearts. We are all so used to hanging out by Oli that we all feel like our universe a bit off. Even Cora will crawl to his room and look for him. Hope to be home soon. Happy Fathers Day! More to come, soon hopefully!

Bump

2011-06-17T22:05:00.002-05:00

Oliver is in the hospital hopefully only for a short stay. He has been having seizures all week. Hopefully we can just do a quick med fix or figure out what is causing the seizures and boogie out. He had been miserable all day and then of course when we get into the car he starts to smile. Little stinker! Hopefully they will see something on the EEG. We will keep you posted. Oliver was pulling off the EEG leads after they would place them on. He is so funny. Anybody that thinks Oliver is not a typical three year old, I promise he is. He knows just what he is doing! The poor technician just wanted to get out of there and Oliver was really giving her a rough time. She came back on a Friday night just to get him hooked up. Pray that Oli has a seizure so they can see what the snot is going on! Then pray that they stop right after. I know, I am really getting picky about my prayer requests!

Summer is Here!

2011-06-07T20:33:00.005-05:00

Adina reading Cora a book. Cora is happiest when her big sister and big brother are around. When Oli moves his hands towards Cora she gives him a big squeal back!

Coras first time at the lake. She wasn't sure the first time, now she will crawl right into the water.

Coraline got to meet her Great-Uncles on Memorial Day when they came for a visit from CA. Uncle Jim is holding Coraline and Jim's partner Don is behind. It was a fun day with the Uncles! Adina was hoping they would stay for a sleep over.

Life has been good in the Klawiter house. Coraline is becoming a fiesty one year old. She will soon learn the the tantrums won't get her far in this house! Adina had a quick surgery today to take the tubes out of her ears. They are supposed to fall out on their own but of course Adina's stayed in. Adina was not too thrilled and they had to drag her back. Besides barfing projectile style on the way home twice I would say the morning was a success! The temp was 102 here today, that is just too darn hot for this Minnesota family. We hid out all day in the air conditioned house. We have two fans pointed on Oli because he gets so hot so fast. He has been having an awesome few weeks. We have a few bumps here and there but who doesn't! We are going to Gillette in a few days to get sized up for a new wheel chair. I am so excited because we never thought we would be able to go to the appointment. This gets confusing for some people because he is hospice but we have decided that we are going to plan for the future and just go on with life. Oli does not have a comfortable place to sit with good support because his last chair no longer meets his needs. When people hear hospice, they assume that means the end is close. That is the case with adults, usually it is six months or less. With kids there is no timeline because kids are so darn resiliant and take a more up and down and all over the place direction. There is no timeline at all. Right now because Oli is doing so well hospice only comes a couple times a week for a check in. They are always a phone call away for those times where we need them and they are a good resource for what we should do and what we can skip. We continue to get so much great support from everybody! We love all of the kind words and support and it gets us through a lot! The church John is doing his internship at amazes me everyday. They love Oli so much and have helped our family so much in so many ways. Words cannot express how much love they all share.

We know that we have a different lifestyle. We can't be spontaneous and take a quick road trip. We don't even venture out an hour away all together because we are not going to leave Oli, he is our family. John or myself are always close by. We are never sad about this, life is life. We are still enjoying life and we are happy. We hope that everybody understands that we do not feel like Oli is a burden to us or that we feel he would be better off if he passed. If you have heard that from somebody it is not true! We are not keeping him alive with the ventilator, he does most of the breathing on his own. We are however helping him with comfort. If you are having any of these feelings that is fine, but don't tell them to us. They are actually very hurtful. Oliver is our beautiful, happy, loving, son. Oliver's doctors at Gillette help us when we need it with the big decisions, we are covered in the advice department. Everybody else only needs to focus on the non-medical stuff for now and look past the tubes. If you can't do that you are seriously missing out.

This is what you get if you can see past the tubes. One happy, perfect, smiling Oliver!!

This picture was just taken tonight. What a stud!

Graduation and Birthdays

2011-05-21T20:24:00.011-05:00

Adina graduated from preschool this week. It was an exciting night for her! We were nervous because she does not like to stand in front of a crowd to sing but she did it! Now unfortunately we have the summer off from school. Next year she will go to preschool five days a week. Coraline turned one today and we had a small little party with just the five of us plus one nurse. We will have another party in the beginning of the summer when it is not such a busy time for everybody. Oli is having another good week, he is living up to being three. He is a stinker and likes to pull off his vent tubing, tries to pull his needle out, and still loves to smile when his sisters are throwing hissy fits! We started the month with Oli's birthday, Cora in the middle, and John's the 26th. It's a birthday month!

Three cute kids, one a little shady

2011-05-14T19:53:00.008-05:00

Cora trying a beautiful hat on, Adina supporting the cause for a breast cancer cure, and Oli listening to his music during music therapy.

We took the girls to the MOA. While Adina was going on rides I thought Cora might want to try on some shades! Actually, I think torturing babies with sunglasses for my own pleasure is the greatest thing ever!

Seriously Mom!! Enough with the sunglasses!

And this hat...not so cute mom!

Cora will be one in a week! John and I are trying to figure out where the year went. She continues to be a great sleeper, but is definitely no longer our little Ms. Mellow. She has learned how to push the buttons of her older sister and crawl away as fast as possible! We try not to laugh but it is not easy. She will eventually learn about the joy of time outs. I have this sneaking suspicion that she will be very familiar with the time out corner! Oliver had a fantastic week! Last week was rough until the day of his care conference when the doctors came to see him. Since that day he has been awake much more, sitting in his chair looking at vision cards, laughing and smiling at his sisters, and being our studly Mr. Oliver! Who knows if this will be a week long phase, a month, two more minutes, nobody knows what Oli is going to do. We are just enjoying every single smile he gives us. We don't focus on what could happen tomorrow or the next day. Life is good!

Mr. Tough Guy

2011-05-05T21:23:00.004-05:00

Oliver is now our big 3 year old and is a tough guy in every way! We had a quiet little day with a few family members. Oliver gets overwhelmed with a lot of commotion so we gave him what he wanted, quiet. It was nice for us to have some quiet too with just the five of us. Adina decorated the night before with one of Oli's nurses. There were streamers everywhere, including around his oxygen tubing. We then put a mattress on the floor and let her sleep on the floor next to Oli's bed. She insisted that she would be the first to say Happy Birthday! While she decorating Oli's room she had the best conversation with him. Adina: "Oli... I'm decorating your room with red streamers. It looks good. Do you like it?" Oliver: Deep in thought, but no comment. Adina: I hear a yyyeeeesssssss." She continues to amaze me with her love for her brother. Today she went up to a lady at Target and so bluntly put it. "My brother Oliver is going to die, but my best friend from Gillette is coming to MY house today!"
We had a care conference today with hospice, child life (Adina's best friend from Gillette and is rated right next to God in Adina's book), and Oliver's Neurologist and Palliative Care doc, both rated at the top in our book! Nothing really changed as a result of that but it was awesome that they were able to come here to see Oli and touch base. No doctor in this world will likely ever be able to tell us what diagnosis Oliver has and that sucks. That has never decreased the respect Oliver gets from our Gillette doctors and there are no words that can express how much they mean to us because even as Oli seems to decline, they truly care about Oliver and have never brushed him off. It is nice to have doctors realize that Oli fits no guide book and follows his own rules by just doing what Oli does. I could go on for pages, but it is so nice that John and I will always feel like they will help us do and see what is best for Oli.
I don't really know how to explain our Oliver. He continues to do his own thing. His seizure med levels were really low and now they are really high. His tummy was working better, now it is not working well at all. He will breathe well on his own and then two minutes later not well at all. The hardest part to know is if it is the end of life process or Oli being Oli. We are just at the point of what ever right now. What ever Oli does we will just work with him. I could talk about every bodily function of Oli's that is doing this or that but it would all be different in two minutes.
Oliver has three new nurses starting this week. I have a lot of anxiety when ever we have a new nurse. They all seem great but I will do my nonchalant but probably oh so obvious hover craft thing for a while and will not be taking any walks or runs during this time! We have been lucky so far and have four of the best nurses out there, hopefully we continue our lucky streak!
Thanks again for all of the support. We know that everybody is really curious about what is going on with stud muffin and we try to update often. Yes I posted last week and was having a bad day and was frustrated. John wanted me to leave it up but I took it down. From now on I will vent these emotions to John. It is hard to articulate some of the feelings with out sounding angry at times. Emotions are normal and I have never been one to keep my mouth shut, as John may tell you! Insert Joke here.

Hanson cousin picture.

Cora now smiles for the camera. I think thats a smile!

Adina sleeping on Oli's floor, it was a one time event

Happy Birthday Oliver!

Adina and Oliver's nurse decorating the night before the big day

Adina baking a cake for Oliver all by herself

Coraline holding Oliver's hand.

We did hand prints of the three kids. Oliver was the easiest! Cora looks a bit like she has the hand print of an alien.

2011-04-26T19:51:00.002-05:00

"If I dump it out while nobody is looking, I can blame this all on Adina!"

"Promise dad! Adina did it."

Oliver during music therapy. He loves to have his hand on the guitar and feel the vibration. As soon as the guitar is gone he starts feeling around for it.

Oliver continues to rest comfortably today. He wakes up a little bit but is really tired from what I hope is recovery from pneumonia and bacterial infection. Hospice seems sure that it is all related to end of life but I am going to cheer for team Oli and not give up. I obviously see the signs that he is tired and his heart beat has been changing from minute to minute. I will listen and hear irregularity and ten minutes later another nurse will hear it back to regular and vice-versa. From shift to shift it will be weak then strong. He is a constantly changing little man and he always has been. John and I are not ready to fully accept what the hospice team feels is coming. We can read reactions from others and know when they are feeling like we are just in complete denial. Maybe we are, but we are mommy and daddy. Think about your kids and then think about how you might feel when someone says you need to have a plan because it looks like he is getting too tired to go on. John and I just can't quit yet. We are supposed to talk about what we are going to look for as Oliver's sign that he is just too tired. The thing about Oliver is that from day to day he has never ever been consistent or followed the guide book for seizures, sleep, special needs, whatever guide that may be. He is consistently inconsistent. He is not going to follow a guide for death either and we don't want him to. He has always been a mystery man, most of his doctors would tell you the same. So we are going to give Oli every chance especially when he continues to remain comfortable. We were able to lower the rate on the vent today and hope to wean him off and get him breathing on his own.
So even if you agree with hospice and feel that we need to accept what seems to be coming, we would love for you to all share our hope that team Oli will fight through this. At least pretend around us. Oli is one tough kiddo and I know I will never possess even a fraction of his strength.

Spring walk

2011-04-25T16:13:00.003-05:00

We took Oli out for a spring walk since it was a beautiful day! He did wake up for a little bit and seemed to like the wind in his face. He has always loved walks! We walked to church to surprise daddy. We told Adina about the news that John gave to you all today. She is excited for now, we will see when the time actually comes. I have many different emotions about it all. Mostly shock!

Daddy has something to say

2011-04-25T10:07:00.004-05:00

This is John, I don’t take too many opportunities to write on here, but there is some good news that I’d like to share even as Oli continues to decline.

In October, there will be another addition to the Klawiter family. Your reaction right now might be—are you serious?!!! Trust me, that was our reaction too. Taryn went to the doctor worried something else was wrong. She called and I didn't believe her until she got home and I saw her face. I knew Taryn wasn’t playing a joke on me. The doctor said it was definitely divine intervention, I will not get into any more specifics than that. God does bring miracles when you least—and I do mean least—expect it. However, we are very excited for this unexpected surprise. Taryn has been trying to take care of herself too, it’s been a stressful time on her body with the lack of a night nurse, but it is becoming more and more apparent that this is a secret we wouldn’t be able to keep much longer—Taryn is starting to show. With all of our energy and focus on taking care of Oli, this is news that we want to share with everyone who’s been keeping him in your prayers. It’s also some good news in the midst of our sadness. Now that this blog is out there, we can also finally tell our secret to Adina—can’t wait to get her reaction.

Oliver has been a real trooper since coming home, but you can tell that he’s really worn down and worn out. We keep praying for a miracle and a rally, but it looks like things are shutting down. His 3rd birthday is on Sunday and we hope to celebrate quietly as a family. To reiterate what Taryn posted Saturday, if you’d like to come say goodbye and get closure with Oli, you are more than welcome to call or email either of us to come over. I know that Oliver has been able to stay strong and be lifted up from all the love, prayers, and strength that you have given him over the last few weeks, months, and 3 years.

If you haven’t heard it from me or Taryn, we sincerely do appreciate all of the food, the cards, the prayers, the hugs, the calls and email/facebook posts. If you feel like you don’t know what to do or you haven’t done anything, please know that we are appreciative of your support and that we have been well taken care of through it all

Not a Good Friday

2011-04-23T21:24:00.002-05:00

Oliver has been struggling much of the week with a virus but seemed to be coming out of it okay. We hooked up a Bipap Wednesday to help his lungs stay open because he was having so much difficulty breathing out. Friday morning around 3 am his oxygen saturations started to drop and I could not figure out why they were dropping and his respirations were going up. He was working really hard to breathe. By six a.m. I finally realized a tiny piece of the Bipap tubing that delivers the oxygen was broken. I felt horrible that I did not find it sooner. I quickly fixed the tubing but his oxygen sats did not go back up, rather they went down. We made some adjustments throughout the day Friday but he was crashing fast and it was scary. The evening nurse noticed that his right lung was very quiet sounding, we were wondering if it had collapsed. His sats were far below 60, they should be 100 percent. John and I made the decision to go in to the hospital. We had said we were not going to do this but when the time comes and your little one is struggling you want to do everything. Another ambulance ride to Childrens. They were very sensitive to the fact that he was hospice and careful not to do any interventions without talking to us. His O2 sats were 50, 40, 30, and even lower at some points. Right after John and our nurse left for home, Oliver stopped breathing. Our plan all along was to not bag Oli and let him go. I was alone and I was scared so we bagged him. I did not want to make that final decision without John. We had two choices at this point. Oliver was, in the opinion of the doctor, not going to make it through the night and he wanted to know where we wanted Oli to pass. We had the option to put Oli on a vent, also not in the plan. We were so tired that John and I both felt that we should have him on the ventilator Friday night and bring him home, off of it, on Saturday and probably let him go today. We were so tired and drained that we just needed sleep. We slept close by down the hall in the sleep rooms and the PICU nurses who are the best of the best took great care of our boy. We went to Oli's room this morning to turn his vent off and go home with him. Oli was completely unresponsive last night so we thought that Oliver had already left us. We said Good morning Oli. He opened his eyes, smiled, and grabbed our hands. So guess what? We came home on a vent and now really don't know what is going to happen. He is doing okay but still has low sats even though he has a ventilator. Doctors are sure this is a sign of his neurologic decline. I just follow Oli's lead. He has pnemonia, in his x-ray his right lung was completely filled and they also found some bacteria in his blood. We don't know what to do anymore and I know as a nurse what decision I should probably make but as a mother I want to hold on to every last second and John feels the same--especially when he's responsive. I talked to Adina about it today and explained the vent to her. She said, "Mommy, I think it is time that Oli goes to Heaven. Then he can walk and run." I wish I had her courage and wisdom but we just couldn't let him go, especially when he flashes that smile.
We are home now and we are going to have a quiet family Easter together. We have nurses but we do not want to be far away from home and Oli wants to be part of our party. I am glad that I know he has pnemonia. I was sure that I caused this episode by not catching the broken tubing right away, I would have blamed myself for a lifetime.
Oliver gets very sick very easily from the slightest cold. We love having visitors and don't want anybody to stay away. Regardless of what anybody says we do not want anybody to stay away. There have been times where we have limited visitors like when Cora was a baby and other times but it is not because we don't want to see people but because Oli was very sick at the time and we can't bring more germs in the house. If we need privacy we put notes up on the door. If you are sick or have been around sick family, just wait a week. Hope you all have a happy and restful Easter. I am hoping that ours is Happy more than Friday was Good.

A Bump or Two

2011-04-16T20:43:00.006-05:00

Since we have been home we have been staffed for 24 hour nursing care assuming that state would agree that Oli now needs 24 hours. The whole story and explaining all of the rules could take up a whole book but I will give you the "in a nut shell explanation" of what I got. Friday we received a letter saying we were denied 24 hour RN care. I first called someone who works at the county office and they had me call another person who had me call another. It always seems like a mystery as to who really makes these decisions. I finally just gave one of the staff a piece of my mind because I was so frustrated and she told me the issue could wait until Monday, she patched me through to her supervisor. Here is what I understood from one of the many explanations. Because Oliver is not on a ventilator or on Bipap he cannot get 24 hour care. There are kids with IVs that do get 24 hours in other counties but Oli does not, even though he is on two 24 hour pain pumps through the IV. Another person told me because we would not call 911 if he stopped breathing we do not get 24 hours. Immediately we had to eliminate our night shift nurse to balance the hours. It is all very frustrating when you hear of other kids in different counties that have fewer pieces of equipment that do have 24 hours. I am not saying that they are less deserving, it would just be great if we didn't have to fight so much. Every time I watch the news and a politician on either side wants to make cuts to human service programs I just get a lump in my throat wondering what might happen to all of the people that need these services. John and I are both still shocked, but we just deal with what we have.
Oliver had a fantastic start of the week. Feeds were up to 26mls/hr, he was smiling more, looking at his vision cards, and even up in his chair for a bit. I was bragging to the hospice nurse and I should have known better! After she left Oli took a long nap. He woke up in a coughing spell and I knew that something was brewing. He has some respiratory stuff that he is fighting. Breathing is very hard again, Morphine increased again, and his O2 saturation were around 70 percent(healthy people are around 100 percent). It is easy to see when Oliver is having lung collapse. When he breathes out it takes him 10-12 seconds to push the air out. Try breathing out for 10 seconds every time for one minute. It is really hard, I try to breathe with Oli and cannot do it. Morphine helps Oliver not realize how uncomfortable this should be. Feeds are back down again and we are just hoping he can fight this off. Hour by hour is what we do.
Everybody continues to be so supportive and I know the blog is checked frequently. We are so lucky to have all of you in our lives. Oliver has and continues to bring amazing people into our lives. All of your love cancels out all of the frustration that comes from the battle of the hours.
We as a family are doing okay. I guess we would explain it that we normalize every phase. Oliver does okay for a week and we get used to that new baseline. Then he declines or gets sick and we re-grieve and then re-normalize. I'm not sure that makes sense but it is our cycle. When he does better than hospice expects, then we celebrate! Here is hoping for a week that starts off like last if we can just get over this bump!

Beautiful Babes

2011-04-09T07:40:00.006-05:00

These are a few of the pictures that we took last Saturday. They are all so beautiful and the photographer and her family put a lot of love into taking them.

Adina is keeping an eye on her brother! She is his little protector. Cora was holding Oliver's O2 tubing and Adina does not like that one bit!

All eyes in different directions and a bow out of place. Perfect!!

Up and Down

2011-04-06T21:39:00.002-05:00

Oliver had a really great weekend and we were able to get the feeding rate up to 20 mls/hr. He slept a lot but was very comfortable and just seemed to need the sleep. Over the weekend Oli got his make a wish granted. They heard of Oli's condition and we told them how much he was listening to music right now so they brought Oliver a new Bose stereo and an Ipod touch! It was the perfect wish and Oli has been listening non-stop to his music without the CD player pooping out. He also had a big boy hair cut that looks so sweet and we had our family pictures done. People are good.
Yesterday Oliver sounded like his lungs were gunky so I decided it was a good time to start his vest treatments again. He has not had it since his port was placed and it was a BAD BAD decision on my part. I will be beating myself up for a while on that one. Oli went from really happy to feeling a lot of pain soon after the vest. We have been struggling all day to get on top of his pain and we had to go down on feeds again. Last week we were hoping he would stop pooping, today we were trying to get him to poop because it had been so many days. It is a constant up and down of figuring out what to do. I started cheering today when Oli pooped and Adina said, "Yay!! Mommy now maybe Oli will not die?" We just keep telling her we are doing everything possible to get Oli in feeling better. We are tired. We go from thinking we only have a little time left with Oli to thinking maybe he is getting a little better. This could go on for a long time so we are doing our best to make life "normal" for the girls.
Oliver is strong. I look at him when he is in pain with a silent tear dripping down from his eye. Not being able to fix the pain makes me break inside and all I can do is wipe the tear away. Oliver has taught us and so many other people so many things. The people that look at Oliver and only see tubes and feel pity are missing all of the beautiful little secrets Oli shares if you just sit with him and listen. In the last few years we have gotten ideas and suggestions how to make Oli better from people who we know mean well. How important it is that kids crawl and how important it is that we don't give up. These people are all missing the point. We have never given up on Oli and we love him for everything he has accomplished that those people can't see. We just ask that people continue to see Oliver for the strong little stud muffin that he is.
I try to update more but some days are too hard to write and other days are going so well I am afraid to say it out loud. We still do not know what is in store for Oliver and we are praying every minute that we can have a lot more time! Thanks again for everything.

Holding our Breath

2011-04-01T21:35:00.003-05:00

It has been a very emotional and tiring two days. We started Oliver on feeds through his tummy and with in about 10 hours he had very bad diarrhea more than once. After talking with the hospice group they felt that it was a sign Oliver just can't handle foods and it was maybe time to just enjoy what is left. John and I cried and Adina cried. She said, "quick mommy, get Oli in the car and we will get him a room at Gillette and the doctors there can fix it!"
After a few hours we decided that we have to try just one more time! We ran Oli's feeds at 3 ml's per hour. A very tiny amount but he did okay. Today we bumped him up to 5 mls. No tummy pain, no diarrhea, no bloating, he is looking good. We bumped him to 7 and then 10. 10 is where he was at in the hospital and we could see very quickly that he would not tolerate that amount a week ago. We will see how the night goes, we are holding our breath. His normal feeding rate is 55 mls/hr so 10 is still a very small amount but huge for our dude. We want so badly for this to work! Oliver is having his big boy haircut tomorrow and then professional family pics as well. Oliver's day nurse had connections for both services and they are coming right to our house. She is the best! There are so many great people in this world that have so much love. We are amazed at how wonderful everybody has been through all of this. Oliver has the very best nurses who shower him with love and the very best care. Time to go crawl in bed with my little dude. Oli's bed has become a family hang out where we sit and cry, laugh, and cheer him on! Go Oli!!

Stopping the TPN

2011-03-30T11:37:00.003-05:00

We have decided that we are going to stop the TPN (IV nutrition) a week early. Oliver seems to be having more complications, pain, and fluid overload from this than anything. We gave it in the hopes that we would get a few decent weeks and then try to start food again but he has just been very unhappy. We will start very slow with about 5 ml's of Pedialyte an hour which is like having a tiny sip. If he does ok we will try to go up. If not we will pull back and make Oliver as comfortable as possible. We are terrified. I really really hope this works. Pray for the tummy! Oliver really needs a haircut as well, he is growing a mullet. Hospice found a volunteer that will come to the house. We are super excited to have a new big boy hair cut. Adina went to school today which was huge for her. It has been helpful to have a lot of people come see Oliver because she gets attention too. If you want to come and visit please don't be afraid to call. If we can't do it we will be honest. If anybody has been sick we just ask that you wait a few days. We will keep you posted about Oli's tummy. This will be a very nerve wracking few days to come. We are at the point where we don't even know how to pray. We pray for Oliver to stay with us but we also pray that he doesn't struggle and suffer anymore. So I guess I don't know where that leaves us. Oli again has had an increase in the Morphine and Ativan and continues to daily need more to even touch the pain. Thanks again for all of the love, support, food, and prayers! I know that I usually post pictures with my posts. Oliver still looks like our beautiful little angelic stud muffin but he also looks like he is in pain and that is not how we want people to see him. I will repost our favorite and the way we want you to think of Oli. This was Christmas Eve right after the organ stopped. Oli had been singing loudly with the music and decided to have a lovely solo at the end! Go Oli! (This was pre-trach when he could yell!)

Tired

2011-03-28T20:33:00.005-05:00

We continue to just get through the day, sometimes hour. Oliver is having a hard time tolerating his TPN (food in IV form). He is retaining fluid and getting overloaded and it is making breathing hard and painful. Our option was to stop TPN and see how his tummy does. We are not ready for that option yet. They will lower the fluid volume in the TPN and keep the calories the same and see if that makes it any easier for Oliver. He wakes up for a few minutes but is usually in a lot of pain. We have a couple minutes where he will smile a little bit and we suck that time in as much as possible and hold on to it for the rest of the day. We are so lucky to have the best nurses in the world. Our hospice nurses have been great and are there to do all the extra work and make the calls so we don't have to. They are honest with us and help us make decisions that are really hard. Gillette has also been in close contact to offer support and resources. We are really blessed to have so many resources available, great nurses, and the best family, friends, and church community ever! Como Park Lutheran members have been bringing a meal every night. It has been SO helpful, THANK YOU!!
John and I asked the hospice nurse today for her honest opinion about what she was seeing with Oliver. She said that everyday we have been home we continue to make a lot of changes from increasing the morphine and ativan and decreasing fluids and giving meds to try and take the fluid away from the lungs. She said so far Oliver has not hit the plateau that they hope to see kids take for a while when going through this process. We are not giving up hope. John and I know and see the changes but we just can't seem to fully comprehend that it is actually happening. He is our little stud muffin and this just seems so unfair that he has to struggle like this. The nurse said that some kids still plateau for a while, some continue to decline fast, and few get any better. We so want Oli to get better, I think we both beg God to just give us more time with our happy boy. We have no control and we are going to snuggle and love and kiss Oli and follow his lead. As I said last night, this just all really sucks.

Adding on to tonights post........................................
Oliver just woke up and is having great difficulty breathing and is in a lot of pain. Please pray for Oliver. We are so scared.

Home

2011-03-27T22:16:00.002-05:00

Oliver came home yesterday afternoon. It took a few nurses to get everything lined up for us to go home and the hospice nurse had everything ready for a smooth transition home. It has been a crazy 24 hours. Our nurses are not trained in on IV until they have their class tomorrow and Oli needed IV meds every hour last night so I was up a lot. The last two days in the hospital the nurses put Oli in a regular bed instead of crib so we could lay with Oli and snuggle him up! After a few hours of that I called John and told him to go and buy Oli a new bed because I was moving into his room. I now sleep with Oli and I study his sweet little face. I try to memorize every little detial about his face. Since he needed so much morphine last night they nurse came today and we started Oli on a 24 hour Morphine pump. Tomorrow we will have a physician come to the house to evaluate. The nurse is very concerned about how Oli is breathing so we need to get him checked. John and I take turns having our moments. I went to Target today and started to cry just thinking about all of the trips I have made there for Oli's meds. It just comes at random times. I guess it is anticipatory greif. Adina loves to lay next to Oliver and sings him lullabies. Tonight she asked our nurse why Oli has to sleep so much and wonders when we will wake him up. I keep hoping and praying that Oli will just pop out of this. This all just sucks.

Care Conference

2011-03-25T14:18:00.002-05:00

Oli's conference went well. Met with the Hospice team and then doctors put in their thoughts. We will go home tomorrow. Would have been today but because Oliver is recieving his nutrition through his central line (new port they placed) they have to check electrolytes. So tomorrow after labs have been drawn and checked we are outta here. He will have to get labs at home too but the hospice team will come to the house, draw them, and take them away. We don't have to leave the house! We tried to feed Oli last night and it didn't work. Our plan is we are going to give Oliver a two week tummy rest. He will get his nutrition from an IV form or food. Fluids, electrolytes, vitamins... After two weeks we will very slowly try to reintroduce food into his tummy. If he cannot tolerate food we have made the decision to feed to comfort. This means as explained by our Palliative care doctor, when he seems like his mouth is dry we give him a little water or pedialyte. He does not feel like he is starving because his body has starting turning off that feeding center that controls hunger and thirst. This could be why his tummy is not working anymore. I asked him what he felt the liklihood is that his tummy will start to funtion again. He said he feels that it is not likely, less that 50 percent. I hope he is wrong and he hopes he is wrong, but I needed to ask that question. I know many people think that we can't "give up", "doctors are always wrong", etc. I know this, and we are not giving up. We are preparing and hope to God we are all wrong. The reason that we do not keep him on the TPN (feeding through his veins), is that it comes with great risks itself. Kids that are on this longterm get many painful infections and are in the hospital a lot. Long term use of this eventually leads to liver failure. So we could vent him and breathe for him, feed him in a not always so safe way, and give him lots more time. This would be lots more time in the hospital feeling very sick and highly medication. Or, we could keep him comfortable and have him home and give him good quality of life. Trying to do the "right" thing is hard. Watching your child suffer in anyway is hard.
Adina is doing okay, she is working with child life at Gillette and will be every week for a while. I don't really know how to explain this to Adina. I am going to go to the Center for Grief, Loss, and Transition soon to get help for us all. John and I are perhaps collected on the outside, at least John is. The emotions of it all hit at night when all is quiet and your brain won't turn off. I hate this. I pray every night that Oli is going to pop out of this. I also don't want him in pain. Thank you everyone for the love, letters, and personal prayers. They help us all get through the day.

Time to Go Home

2011-03-24T18:05:00.002-05:00

Oli's surgery went well today and the port is placed. He is in a lot of pain and as usual pain management is always a challenge with Oliver. We had a pulmonologist come in today, not our normal doc but a very honest, blunt, to the point doctor. My favorite kind. He basically said that the meds we are giving to help him breathe are not going to work anymore. The best thing that we can do for Oliver right now is to keep him mildly sedated so his airway can relax and he is comfortable. Olivers tummy is not tolerating even pedialyte and he is again becoming puffy. The doctor said it is time for Oliver to be home with us and around his sisters so they can get lots of snuggle time with him. Everything now can be managed at home. We have a conference tomorrow with the hospice team and our nurses so everyone is on the same page. We had a little bump today trying to get Hospice covered. The reason.. they decided that Oliver isn't disabled because they didn't have it in the paperwork! I laughed when the social worker told me. What else could I do, it was either laugh, cry, or swear! I made some calls, he is now disabled again. Prayers would be great at about 10 tomorrow morning that John and I make it through. I know we have some big decisions to make that I would just love to run away from. It's time for Oli to come home with us now so we can love him up BIG time. Thanks for the prayers and love and support.

Hard Topic

2011-03-23T10:07:00.002-05:00

A lot of our snow was gone in our yard, now it is back. We are all ready for winter to be done! I have not posted for a while, I have actually been avoiding doing so because sometimes it is nice to have things private for a while before we share them. Oliver did fantastic after his trach was placed. He was happy, smiling non-stop and life was great. We had a few bumps but managed with meds. Three weeks ago Oli had more difficulty breathing but his X-ray was clear so we decided not to have him admitted. The following day he became much worse and we called the ambulance for a ride to the hospital. The girls were in bed so John couldn't take us and Oliver cannot be transported unless we have two adults in the car. So basically I just called the ambulance for a ride. It ended up being pneumonia, he was in the PICU for one day and then we talked with our Palliative care doctor and Pulmonologist who are always sensitive to what is best for Oliver. We came up with a plan for how to treat Oli at home the best we could knowing that he could get worse. We were at that point of using Morphine for comfort needs not knowing where Oli would go. He did get better but very quickly became very sick again. We followed the plan to stay home but Morphine was not keeping him comfortable and his temp was 105.5 and increasing so we again are at Gillette. Oliver has also become very swollen around his eyes, face, hands, feet, and lungs. Here is where it is hard for me to write. After all of the testing it was clear that Oli had a little virus but his body no longer can tolerate even small colds. It is hard for him to be in the hospital and becoming very hard on Adina to have her family split up. With our doctors, whom we trust immensely, we have decided that we are going to have Oliver placed on the care of a Hospice team. They will work alongside our already existing home care nurses. We want to be very clear about what this means for Oliver. With adults it is understood that when they are placed in hospice they have a very short time left. With kids it is often very different, especial kids like Oliver. We do not know what condition Oliver has. We don't know why he continues to lose muscle tone, it is not because we don't work with him enough because he gets therapy and uses his equipment daily. It is just the way Oliver is. We don't know why he is getting sick more often, but it does seem that he is declining and is needing more medication to stay comfortable and well. Our goal for Oliver is that he stays at home where he is comfortable. He has advanced directives and is now DNR. He has been through so much and is so strong, but if his little heart stops, bringing him back would be very VERY painful and he would then be placed on a ventilator. We did not place the trach so we could have a ventilator but so he was comfortable and his airway was more stable. Tomorrow Oliver will have surgery to have a Port-A-Cath placed, which will give us access to use IV medications at home. This will help us keep him home and not in the hospital. Hospice will be a resource for us 24 hours a day. If Oli gets a temp for 105.8 again they can come and help us decide what to do. They have social workers, counselors, chaplains,... They will check on Oli once to twice a week, more or less based on need. Our focus is no longer test, test, treat, but comfort for Oliver. Obviously we will treat with antibiotics when we can, but with a virus we can only wait it out and see where Oli goes. Please understand that we are not giving up on Oliver. He could get better and have a great summer and be fine for a long time to come. We just need to be ready and prepare the best we can. We would appreciate if you have any questions to call or email us. Sometimes information changes when passed down the line. Oliver is a very strong little boy and surprises us everyday. It is hard for us to share this. There are times that we want to hold what we know and just keep it ours for a while or forever. Perhaps that is more of an attempt to try and not let the future come. Adina is struggling right now. She is just old enough to understand that things are changing. We have not explained to her that Oli may not be here forever, but on her own she has been asking a lot about death. She is seeing a counselor at Gillette, which is her special time. She cried much of the night last night because she wanted her Oli home. The best thing we can do for her right now is to not leave her because she gets very afraid when John and I are away at the same time. I will try to post again soon because I know you all care about Oliver. Don't feel like you can't call. We just don't pick up if we are busy=)

Good day

2011-01-31T22:15:00.002-06:00

Olivers surgery went really well. We had a really crazy weekend getting ready. Everybody in the house had a cold except for Oliver. Thank You God! We got a call Monday morning and they said, "We need you to come early, we need to do a muscle biopsy too and it has to be at HCMC by 1:00!" So we ran around the house, got Adina to school, and made it to the hospital. HCMC is Hennepin County Medical Center. They process the muscle sample and get it sent off to different labs around the country. Our neurologist pulled some large strings in order for them to do this biopsy. They were not able to do it last week at Gillette, but life always works itself out! The doc today first just took a look at his throat. He had quite a bit of Tracheomalacia, which basically means he has a floppy airway. They could have opened it by using a laser but there is no guarantee that it would eliminate the problem or that it would last long. The thought of having Oli recover from that and then possible having another surgery in a month or two did not seem right. He now has a trach and he woke up happy! He did not D-sat and other than seeming a little confused he was actually content. He had a BIG smile for daddy! Now we just wait for healing. In a few days they will do the first trach change. After about seven days he should be out of PICU and then it is training time for the fam. I have worked with trachs so I am comfortable with suctioning, changes, etc. I will still go through training with John, but I was able to "test out" of suctioning and they have let me perform as many cares as they can let me do. The nurse told John and I to both stay home and get rest as performing all of Olivers cares can be so exhausting and we could use this as a little break. We made it about 20 minutes of both being home and we couldn't take it! We can't leave Oli alone. John is staying nights with the dude, and I am there during the day. John has his own little room with a full bed so life is good! Thanks for the prayers. Oliver seemed to validate our decision by the way he woke up, which is great because it is sometimes hard to know if we have made the right decision. Life is good!

Here we go..

2011-01-30T20:06:00.004-06:00

Oliver is having the surgery for the placement of the Trach Monday the 31st. We are happy with our decision because we see that it will be a benefit for Oliver and it will improve his quality of life. He does have some issues with his airway closing so we do a jaw thrust and he is okay. The trach will just keep the airway open. It seems as though Oliver is declining, but we don't focus on that and ask that nobody else does either. He is still Oli first, equipment last. He could plateau for years and be our dude, or things could move faster (and he would still be our dude). We don't know, just like nobody knows when their time will be. Oliver will be at Children's St. Paul in the PICU. We can't have children in for visitors and I think adults will be limited. Please call if you want to see Oli. I will do my absolute best to update the blog with how Oliver is doing. There is a chance that we would get there and they would say he is not ready for the surgery because he does have a cough. I hope not because he has had a cough for a long time. If he has a fever it is for sure off. There is also a chance that they could do a surgery to open the airway more instead of doing the trach, but eventually they would need to do a trach. We got Oli a new shirt with Popeye on it that says, "I yam what I yam!" He is such a dude. So, thats it. Here we go..

Halo

2011-01-18T20:38:00.012-06:00

Oliver met with the ENT doctor today to go over Oliver's options about why he may be choking more often. It is a complicated condition to explain but I will do my best. We have talked a lot of Oliver dropping is oxygen saturation (D-sats). We have dealt with this for quite a while, it has become worse but we have the equipment to manage at home. He drops below 88 percent we give him high flow oxygen. The high flow doesn't work, we bag him until he is back up. We have actually had a great month. He had pneumonia at least once but we made it through fairly well. He has developed a chronic cough that is very bothersome to me because I feel that he is getting a bit weaker. The D-sats I just explained in Oli's case is Central Apnea. The part of the brain that controls breathing is just not maintaining the breathing process at all times. It is not uncommon in special kiddos. As Adina says, "Oli just forgot to breath a little bit." Now Oliver is showing signs of Obstructive Apnea as well. His throat looked okay today, but he is choking on his secretions. Up until a few weeks ago we probably would have said probably not to a trach. Over the weekend Oliver has had more difficulty with secretions and today he D-satted to 34 percent because he could not clear his throat. Feeling so helpless as your child is choking is the worst feeling in the world. I know if he had a trach I could suction him and make him comfortable. We are being held hostage by the phone. Waiting, always waiting for the doctors to call. I called Oli's doctor that is always very helpful at guiding us to make the right decision. We are hoping to go to Gillette Friday for a meeting to discuss all of the options. Oliver is awesome, he still laughs a lot. When he is laughing it is hard to think that he needs a trach. Then when we are relaxed and not expecting anything, he throws a mucous plug, drops his sats, and throws us for a loop. To explain the trach, he will have a little incision made in his neck with a little tube inserted. He will not breath through his nose and mouth but more through this tube. There are many different kinds of trachs. Oli would have the kind where some sound could still get around it so we would not completely lose his voice. Also, we could suction him much easier. Just because he has a trach does not mean he is stuck to a bed. We can still do all of the things that make Oli happy. It does not mean Oli is dying, I know some people think this. He just need a little more support. We have a lot of different feelings right now and are trying to do what is best for Oliver and our family. We feel safest in our own home lately. As soon as we step out the door, we put our walls up because we know that so many people have many different feelings about what we should do or that Oli is better off one way or another. Adina continues to be Oliver's little guard dog.

Oliver fell asleep after his appointment. John and I were naturally a bit down. Whenever news like this happens we re-grieve the whole situation. We went into Oliver's room and the sun was shining on top of his head like a little Halo. All night we listened to "Halo" by Beyonce! Tried to take a picture of the Halo. He is our little heaven sent angel that teaches us the true meaning of strength every single day.

Oli gets the giggles from the silliest things! Usually its Adina that figures out what makes him laugh.

!!Hula Hoopalooza!!

2011-01-10T20:04:00.010-06:00

Our new year is going well so far, other than we are already sick of winter and it is only January! We have finally staffed all of Oli's hours. Starting January 24th we will have a night nurse 4 days a week and a few evening shifts. Oliver had some blood work done that of course came back with a change but of unknown significance. We are so used to that result. Because the test was basically negative, we are going ahead with a muscle biopsy, possible spinal tap, an EMG, and maybe a few other tests. I have told the doctors that this is it. No more extreme tests after this unless there is a really really good argument! We are in the planning stage as far as which doctor wants what. They are looking for any changes within the Mitochondria. We also got the results back from his eye exam he had in December and he had some cone photoreceptor dysfunction. I called the doctor to get a better explanation and she said right now it is mild. In one year we will repeat the test to see if it has gone from dysfunction to degeneration. Oliver has been moving a lot more lately, uncontrolled movement. Not sure why it is happening, doctors aren't either. He gets really mad because he cannot stop them. We have to watch his weight because with all of the extra movements he may start to drop weight. We are in the planning stages of Oli attending school next fall! What a big boy!

Sitting Pretty!

Put a sock in it! Cora's favorite thing to do is eat her sock!!

Popcorn party!! Kali Rose stayed over night and had a slumber party with Adina. They were up whispering after bedtime. It was cute because their version of a whisper is much different than an adults!

Raspberry time!

Daddy and Oli snoozing at Christmas with the Hanson's.

The sidewalk/tunnel outside of our house! I know our California relatives are incredibly jealous that they don't have this freezing winter wonderland in their front yards!! We will share! Come anytime!!

Putting out cookies for Santa.

Three cuties in their new Christmas ps's.

Adina telling Oliver all about Christmas.

We actually all made it to Christmas's eve service. Oli really enjoyed singing with the music! See video below!

Adina's snowman cookie creation with a chunk missing!

Oli helping with the camera.

Oli singing with the music at church on Christmas Eve. He also heard John's voice during the service and was talking back, loudly! We LOVE it! (even if people around us don't =)

Hula Hoopalooza!

Random pics and Christmas with the Klaws/Claus!

2010-12-19T19:44:00.008-06:00

Getting ready to make Gingerbread Houses with friends.

Adina's Christmas dress. Nope it's not red or green, but poofy and pink like a princess. That was her pick, this way she can wear it for Christmas and Easter. My view? It's only a dress!

Daddy, Cora, and Oli Bear.

Cheese!

Our deck during the last big storm. This was only half way through the storm. More to come!! Gotta love Minnesota!

Adina loves helping her sissy eat.

Cutie in her beautiful dress from Grandma Ruth. Cora is almost 7 months.

Grandma and the girls.

Adina and Grandpa coloring her new castle! Every princess needs a castle =)

Oli checking out his new wardrobe.

Princess all dressed up. Notice the heals.

Cora and Elmo.

Oli loved Elmo too!

Elmo is seriously a big hit.

I have always felt like Oli is saying I love you! He is so wonderful!! Cora makes kissing sounds all day. Of course on video she only does it once!!

Catching Up

2010-12-08T18:02:00.009-06:00

I realized I have missed some cute pics of kids. Adina got to go to MOA yesterday to go on some rides. It was good for her to do something fun and wild since the last few weeks have been very stressful on her I think. She loves her brother so much and hates when he is gone. The day he was back she played hair cut with him. She covers him with a blanket and pretends to cut his hair. Sometimes he likes it, this time was special, he got beads in his hair as well. Next time I will take a video of it! I just looked back at some older posts and videos of Oliver and got a bit emotional. He has changes so much. The hardest part about not knowing exactly what Oliver has is not knowing the future, but I guess none of us really know our future. Still waiting on the state to hear about more hours. It is a little overwhelming to have so many new nurses coming to interview. Having a nurse a few days a week and soon having one everyday is an adjustment. We love the help but just have to get used to trying to have a "normal" family life with a non-family member in the house. Oliver is doing okay today, pain is a little better and he is tolerating foods.

Adina's favorite ride! She has to do it all by herself!

Making a wish. Her first wish was, "I wish Oliver would feel better." I gave her another penny and said, "make this one all about you!" She said, "I wish for a big dolly house!" We will see what Santa can do about that!

Adina with Curious George

Adina and the frog from the Rain forest Cafe. I think it looks a bit like an alien!

Cora sitting with God mama Vicki mouse. Cora loved George too!

Tutu cute!

Adina and Cora with all the boys on Halloween.

Clowning around with dad. (Cora is the clown!)

Family pic at pumpkin patch.

Three baby Klaws. Adina is such a loving little girl. A few days ago she said she wanted to be a mommy like me when she grows up! Then yesterday she changed her mind and said she wants to be a garbage trucker! I told her what ever makes her heart happy is fine with mommy and daddy.

Oli's first real hair cut. (One by a professional) Jen, his main nurse and second mama is holding him. He did awesome! Poor Jen had a work out this day and was covered in hair! This pic was taken about 3 weeks ago. The tape on his cheek is to hold is oxygen tubing.

Oliver getting a ride to one of his tests at Gillette. He loves the wagon rides!

We wish you a Merry Christmas! You may notice that the second verse of the song is Adina's version!

home?

2010-12-05T09:39:00.002-06:00

Doctors just did rounds. I know they love me! When they stand in the hallway in a big circle I join the circle and give my expert opinion! I have noticed none of the other parents do it. He is doing well today so far. Last night he had about a 5 minute seizure which he has never had before. They will either discharge us home or send us to Gillette. They are not comfortable with his neurological stuff here so it is up to the Gillette neuro team. Update again soon, hopefully we are home today.

ok

2010-12-04T13:09:00.003-06:00

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

2010-12-01T12:51:00.005-06:00

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.

2010-10-31T21:15:00.004-05:00

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.

2010-09-27T13:05:00.004-05:00

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!

2010-09-05T12:10:00.008-05:00

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!

2010-07-21T13:31:00.006-05:00

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

2010-06-01T18:54:00.002-05:00

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!

Coraline Shirley

2010-05-23T20:27:00.005-05:00

After months of anticipation, Coraline Shirley is finally here! The day could not have gone any better! We were so worried that it was not going to work out to have the nurse at the house and John in the delivery room, but it was the perfect day! I checked in at 7am, started the meds to start my labor at 9am right after John got to the hospital. I was 3 cm at this point. At 10:30 I was 5 cm, 10:50 I jumped to 10 cm! I had to hold back pushing until the doctor got to the hospital, a few pushes later Coraline came out! Of course I had medication for pain or I am sure I would not be saying it was so easy! I have no problems sharing my weaknesses and I do not like pain! Coraline Shirley was born May 21st at 11:42am. 7lbs 13 oz, 20 inches long. She is a beautiful perfect baby just like her brother and sister are my perfect little sweeties. We are home now, time to see who is louder in the middle of the night, Coraline or Oliver?!

We picked the name because we liked it. There is a children's movie that came out last year and that is where we heard it--we still have to see it, though. Shirley came from my mom. So far we think Coraline is a good mix of Adina and Oliver. Adina is taking good care of "her new baby." Oliver so far is doing well with the change.

More pictures to come!

Spring or Winter

2010-05-11T14:38:00.005-05:00

Spring has come to Minnesota. March and April were warmer than average and May is feeling more like winter with temps in the 40's! I was able to go two Twins games in the new outdoor stadium and it is great to have Minnesota baseball outside. Taryn is getting close to her due date and we are all anxiously waiting to see if she can hold out until her induction date. If she does go before this date there is a good chance that she will have a good friend (who also lives a few doors down) bring her to the hospital. Unless it happens when our nurse is with Oliver I will need to stay with him. I am not comfortable leaving him since he is so sensitive to different people and with all of his medical issues. This way we can keep him as happy as can be. We figure it will all work out some way, eventually that baby is going to come out!
I have told Taryn that I want her to stay at the hospital for the full two days. With Oliver she came home after one day but I really want her to get a lot of rest. We have decided to hold off on visitors at the hospital so she can rest, not that we don't want to show off our baby, just at a later time. This is also going to be a lot for Oliver to take in. He is very sensitive to change and this may just rock his quiet world! Hopefully it does not set off rounds of seizures, but he just needs to adjust. We are going to post a lot of pictures of the new baby, but for a while we are just going to have family confinement! I know this sounds strange, but if you come and live here you will understand. Too much action and different people in the house equals seizures and an unhappy Oliver. Visitors leave, but we all lose a lot of sleep from an unhappy Oliver. We will have a second nurse coming to the house to cover the 17 hours Taryn works with Oliver, so this will be an additional adjustment.
Our hope is that nobody takes offense to this and just understands. It is what we have to do to survive!
Adina is ready for the baby to come out of mommy already, although she may change her mind when it is actually out. I will be taking two classes this summer before I start internship in August.

Story time with mommy

Adina loves to race me to the tree and back.

Swing!! Mommy and Adina like to cheer, "We want a pitcher not a belly itcher." Adina finds this very funny!

Oliver likes to sit on the porch (mom's belly).

Adina really wants that baby out.

My Oli getting snuggled by my girls!

Party and Puddles

2010-04-26T19:28:00.004-05:00

Oliver turns two on May 1st!! I can't believe my little guy is two, or maybe I can't believe we have made it through two years!! Guess it depends on the day. We had a small party for Oliver on Saturday. John and I were both anticipating the worst as Oliver does not really like a lot of stuff going on. He did end up having seizures at the end of the party and has been having them since. It just reinforces our feelings that from now on his parties will be just the four (soon five) of us. Not that we don't love celebrating with others, but it is Oliver's Birthday and a gift we do not need to give him is a seizure. He was in the ER last week for a quick visit, he has been biting his hands so bad that his hand was swollen twice the size it should have been. We got restraints so he would not be able to bite, yes, he loved them!! We also went to see another of his many docs who is following up with other docs from around the country about Oliver. Apparently some of his genetic tests have rarely or never been seen, so many are interested. They have banked some of his blood to do more tests in the future. This way we don't have to keep going in for random blood draws. There was much more from this doctor, but it would be a short novel if I wrote it all. She does feel we need to see a sleep specialist for Oliver. His sleeping situation continues to worsen. Five out of seven nights he will only sleep for about three hours and not nap the following day. Not sure how he does it really.
After Oliver's party there were some perfect mud puddles. Mine and Adina's favorite thing to do after the rain is jump in puddles of course! Nothing better than getting all muddy and messy. It is also fun to explore after the rain. Adina has been coming with to Oliver's therapy appointments at Gillette Hospital. I like having her there because she sees so many other kids in wheelchairs and their siblings. Today she went up to a little girl and said, "Hey, you have a really neat wheelchair." When we walked away she asked if she could get one like it! She also got to see one of the therapy dogs, Adina LOVES these dogs. Adina's newest career's in the, "When I grow up" game is a duck, teacher, piano player, rhino, piano (yes, the actual instrument), and a french fry maker at McDonald's. I told her whatever makes her little heart happy. That is what life is all about, happiness!!

Oliver finally crashed hard after his seizures. When he has seizures he sleeps like this everywhere. This is right after I changed is outfit, diaper, and fed him. He slept through it all!

YES!! Look at all this mud! We had to pour the water out of her boots after this.

Jump...

Jump..

Love the hair!

Snuggle time with daddy!

Birthday Cakes. Adina helped add the sprinkles. Clearly we are master decorators!

Opening the squeaky toys from Adina.

Adina loves to help her brother.

Spring

2010-04-16T19:50:00.006-05:00

It has been a fantastic spring in Minnesota! We have already had many days in the 70's, which is just right. It has been so long since we have posted but I figure that only can mean good news. Oli is doing really well. Still has seizures but he always will. It is just kind of normal to have them every now and then. The big ones are scary, but we have the oxygen and other equipment and meds in the house so we are prepared. Adina knows how to silence the alarms and continues to want to help push his meds (with mommy helping) and is now pouring his food. It is not an everyday thing but when she asks I let her. I think it is very sweet the ways she takes care of Mr. Oliver and he loves her so much.
The nurse has been FANTASTIC!!! She comes twice a week and Adina is now asking when it is her turn to stay with the nurse! It has giving me a chance to do some days with just Adina and take her to do special things. Also, I have a chance to do things that I before took for granted. Like, doing laundry during the day, cleaning while Oliver is still awake, running to the grocery store during the day... things like that.
Adina is three going on 13! We are not always prepared for the attitude that comes with three. The time out corner has been getting good use lately!! It has been great to get outside where she can play with all of her friends and burn off all of that energy! She has decided that when she grows up she will either be a doctor or a turtle. I told her that whatever makes her happy, a mechanic, a teacher, an explorer, or a turtle I guess!
Oliver will start getting Botox injections in his legs at the end of June. It is to help reduce his spastic movements and help him stretch those little legs better. I am happy we are trying this before starting another medication.
The count down is on for baby number three. Adina asks the baby every morning if it is ready to come out yet! We have about 4-5 more weeks to go!!
Happy Spring!

We went roller skating with our church. Oliver took a spin around in his wheels!

Adina skating and falling. She refused any help. She wanted to do it, "all by myself!"

Oliver's new big boy carseat. Took a while for insurance to finally approve this huge thing! He loves it!

Maybe she really can be a turtle. I believe this is where the inspiration of becoming a turtle came from. The children's museum!

Adina's favorite part is the dinosaurs! Daddy apparently was excited too. John is not wearing make-up, Adina painted his face!

My favorite picture of beautiful Oliver.

Adina's first real haircut. She help my hand tight but after they gave her a sucker she wanted another haircut!

Easter! Family pictures are never easy.

Our two bunnies.

Strike a pose!

Painting Easter Eggs.

Very serious business.

Busy Busy

2010-02-14T13:24:00.003-06:00

Since our last post we have been very busy. After being denied for nursing care about six or seven times we were about to give up! Finally we were approved for 35 hours per week! We were hoping for 48 but will take anything. We started the busy process of meeting with our case manager and meeting nurses. We found the perfect nurse and she started last week! Because I am also an RN, I was able to apply for something called a Hardship Waiver. It allows parents who are nurses to care for their family member if they are unable to have a job outside of the house due to the medical needs. I technically work 17.5 hours as an RN with Oliver and get paid for it.
We also have some new equipment in the house. New bath chair, which Oliver so far hates, but will have to learn to love. Also, we now have oxygen tanks, a suction machine, and an Oximeter in the house. I didn't think we would really ever need them, but due to the fact that Oliver has trouble with excess saliva and getting it out of his mouth we need suction for emergency. Since he turned blue in his last seizures we need the oxygen and the Oximeter. While training in the nurse I showed her the equipment and said, "I really don't think you will ever need this equipment." Ten minutes later Oliver started having seizures, Oxygen sat level went from 98% to low 80's, and needed oxygen for about 20 minutes. He also needed his emergency seizure meds that day, so overall I told the nurse it was a great training day! I do have to admit that it was incredibly hard for me to hand Oliver over, even though I trust the RN. John and I do not feel comfortable leaving Oliver with anybody, really, so this was tough—but important! He is so sensitive to everything and has seizures so easily, but the nurse was fantastic! Adina and I were able to go outside and play for two hours in the snow, I was able to do house work, and laundry during the day!!! Usually we have to wait until night to do these things when we are both home. Adina already knows how to work the Oximeter and silence the alarms, she is a little nurse as well. Daddy has been gone almost all day because he’s doing his clinical work at the Good Samaritan (not the VA) and having the nurse come will be a real help.
Oliver had his sedated hearing test and has PERFECT hearing! When the audiologist said this I said, "Excuse me, perfect!? So he is just a normal man with selective hearing!!!" The nurses and sedation doctor were not able to get an IV placed because his veins are so bad. They had to use meds through his G-tube to put him out. Of course all of the excitement from this caused seizures, but he has perfect hearing!! Next time he is sedated for anything we have to tell the nurse ahead of time so they can make some special arrangements.
Adina has been ice skating a few times, but has now also decided that when she grows up, she wants to be a professional bull rider (she saw it on ESPN)! Don't worry, we will not be going out anytime soon to buy her a bull! She is also sure that she has a baby in her belly just like mommy. Now that we have a nurse we will be able to have more special Adina days. The first day that we left Oliver with the nurse, Adina was very worried that the nurse was going to leave Oliver. She is very protective!

Ice and Wheels

2010-01-13T12:00:00.004-06:00

Adina tried out the ice and quickly realized the carpet was a lot easier than the skates on ice!! Most of her time was on her butt! Either way we had lots of fun! She held onto a chair and pushed it along slowly. She fell and said, Mommy, what do you say?" I had no clue!! She said, "Mooommm, when you fall you just get up and try again and keep movin forward!! That's what you said in the car!" Glad some things stick I guess. We will try again soon, we are supposed to have some 34 degree days! HEAT WAVE!! Might need to bust out the shorts and sandals.
We went in Tuesday for Oliver's 8 hour appointment with the Assistive Technology guys and they are absolutely amazing and filled with talent! They start with the base of the chair, look at Oliver, and start cutting out the cushions, back rest, head rest, foot rest, and straps. It is made perfectly for Oliver's little body. The chair is supposed to last about 5 years depending on his growth. Basically, every time he grows out of a clothing size, we go into Gillette again and they will change the size of the chair ("Grow the chair" in assistive tech terms). Luckily we are close to Gillette. We picked up the chair today so we could bring Adina. She was really excited too! Oliver did great on his first ride and seemed to love being able to hold his head up with all of the support offered by the chair. We were so proud on his first test drive that it brought tears to my eyes! Way to go Oliver!!

Ice skating or butt skating? Both were fun!

The chair before the first sit. There were many changes made from larger or smaller cushions, wedges, and on and on. Like I said, these guys are great!

The first test! Oliver didn't scream, I was holding my breath the whole time I think. He was such a little trooper all day.

First drive! We were so excited! Even the tray was cut out and assembled while we were there. The wood and cushion will all be covered.

Adina helps the staff with the straps, a proud big sister.

Figuring out the straps and we are outta here!

Wheelchair home and all finished. I never knew it was such a process but appreciate everything Gillette did/does for us!

Baby

2010-01-06T22:02:00.004-06:00

We had the ultrasound yesterday with the high risk OB docs. So far everything looks great! She asked what we should look at first and I said, "Corpus Callosum!!" That is the part of the brain that Oliver happens to be missing. We looked and there it was, I was so excited I asked for a picture of it! The two staff in the room were laughing, apparently I am the first who has asked for this picture. We got a lot of images of the brain, we could not see the whole head, so we can't rule out that all of the Corpus Callosum is there. We will have another ultrasound in 8 weeks to measure head growth and check on the brain. We are cautiously optimistic! Chances are we will do an MRI of baby after birth to rule everything out. We could do an MRI while baby is still inside of me(crazy!), but there is no guarantee that baby would stay still, we have become pros at patiently waiting so we will just do that.
Oliver had his hearing tested today at Children's hospital. He responded to very loud sounds but not to the softer sound. It could be that he is not developmentally at a stage to turn to all sounds yet or he could have some partial deafness. The audiologist was rolling with laughter at Oliver. He would fuss and as soon as she would make a silly sound he would get the little Oli giggles. They were playing off each other and it was a blast. Small little things that I most likely would have taken for granted with Adina. Oliver is always teaching me something! There are other tests we could have done but with Oliver's sensory issues of people touching his head we could not do them. We will do a test called a Brainstem Auditory Evoked Response test. He will be sedated and they will monitor if the sound reaches his brainstem with the help of electrodes. It will be good to know this info. We know that he hears, just not sure to what level.
Last bit of news, again Oliver was denied for nursing/respite care. Again, like the last zillion, we will appeal until we get a good reason!
Hope everybody is staying warm!! Gotta love Minnesota winter, or I guess pretend to.

Now introducing baby Klawiter Number three! Better pictures to come! (In about 20 weeks=)

Merry Christmas!

2009-12-27T21:15:00.007-06:00

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.

Conversation

2009-12-20T22:48:00.005-06:00

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.

G'day

2009-12-12T02:13:00.002-06:00

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.

Brrr..

2009-12-09T20:36:00.002-06:00

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!!

Good Results

2009-12-03T21:04:00.002-06:00

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!

Having Fun

2009-12-02T13:14:00.003-06:00

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! =)

Missing Daddy

2009-11-30T21:00:00.003-06:00

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!

Long Day

2009-11-24T22:36:00.003-06:00

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!!

October

2009-11-01T19:03:00.005-06:00

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.

More Up's and Down's

2009-10-19T23:10:00.002-05:00

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!

More Stuff

2009-09-30T19:37:00.003-05:00

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!

John's Art

2009-09-16T16:08:00.003-05:00

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.

Day of F's!!

2009-09-05T22:39:00.012-05:00

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!

A Pinch to Grow an Inch (or Half Inch)

2009-08-18T19:54:00.004-05:00

Oliver had an appointment today at Gillette to be fitted for a few things. First was the corner chair. It is just like it sounds. The back of the chair is a corner so when Oliver sits in it he has support. In the front there is a tray so he can practice using his arms and pushing off things. It is a lot like a high chair, but it is on the floor so Oliver can be at the level we are when we are playing on the floor. Insurance does not cover it but we will use the benefit money for this. Gillette found it at a store for $200 dollars off the retail price. I was going to ask them to fit him for a bath chair as well but Abby (Oliver's Physical Therapist) beat me to the punch. She already had that all arranged! So he was fitted for a chair that will make it easier for him to sit in and better for our backs. Right now he uses a bath chair that is for children of normal development. One more month until he gets fitted for the wheel chair! It also will take a while to get the bath chair. First the therapist will fill out the form, then it will be sent to insurance, then they get to decide if Oliver is delayed enough to need a bath chair. They get to decide a lot of things. I know, me venting about insurance is a common thing. Most likely they will cover the bath chair because bathing is necessary. The corner chair however will not be covered. Sitting and learning to use your arms is not as important as a bath? I know I know, not everything can be covered. I should be happy that we have insurance, and I am. Without all of the help we have received I am not sure where we, or Oliver would be.

Appointment two today was Oliver's 15 month check-up. Great news of the day.... Oliver's head grew a half of an inch!! This is big big BIG!!! It has not grown since he was four months old and we have no idea if and when it will grow. I took Adina's head growth for granted. Oliver's head growth we celebrated!! His height and weight is still going well. He also had an x-ray of his lungs, all clear!! No aspiration of food, whew. So, I would say it was a fantastic day of appointments. More therapy tomorrow and an assessment on Thursday to see if Oliver will qualify for any private nursing hours. Not going to hold my breath. I just keep reminding myself to be patient. As Oliver gets older he will receive more help. Right now they (the state) say that everything we do for Oliver is the same that other parents have to do for their kids. So we wait. Wait until Oliver reaches an age where all other kids are potty trained and we have to start ordering bigger diapers. Wait for other kids to feed themselves when Oliver still uses the tube. Wait for other kids to walk/run... you get the point. We are not sad about this, we just know we have to wait. We are having as much fun watching Oliver grow as we did with Adina. Oliver continues to teach us a lot. He really is the best, just like Adina. We got it pretty darn good! We just have to be patient =)

Time to Roll!!

2009-07-23T14:19:00.003-05:00

We had our appointment today with the rehab docs and Oliver was a little charmer. He had therapy first and did so well!! He has been stubborn so far at Gillette, but today he rocked it! We are mainly working on tolerating tummy time and being on the floor. It is really hard for Oliver to be on his tummy because he does not have the strength (yet) in his arms to push up or his head to lift. So even when he tolerates it for 5 minutes we are proud. To some this may seem like no progress at all but for a kiddo as special as Oliver small little movements like these that we take as being easy are really difficult. Oliver is doing a great job and John and I could not be more proud of our little man. The best part of this last month is that Oliver has just been happy. As parents I think that is all we want for our children, happiness.
Okay, back to the doctor update. Special kids with brain issues often times have problems with muscles either being floppy (not much tone) or tight (too much tone). Oliver has developed some tightness in his legs and has a hard time extending them. We have noticed this as well and we will work on it in therapy and at home.
Oliver, at 24 lbs. is beginning to grow out of being able to fit into baby things, as you might imagine. Strollers are difficult and other things like bath chairs. At the end of September we will meet for a wheelchair fitting and some other adaptive equipment. I know that sometimes we see or hear wheelchair and do the "ah man, that is really sad," thing. John and I are actually happy about this next step and are huge advocates. At the way beginning we would have gotten sad at the thought, but that is passed, it is time and we just plain old need it. He has a hard time holding himself up in a stroller and will be more comfortable and happy. That is what it is all about, happiness =) That is why I added the Oliver smile picture. This doctor was pretty cool, she even had blue hair. Not the old lady blue, an actual blue streak! It's fun to get a doctor with some personality sometimes.
It will most likely take 3-4 months before Oliver gets his new wheels. It is a tedious process. You need an Occupational Therapist, Physical Therapist, Special Seating person, and the Vendor. Whew! Getting them all together is the first step! Then somebody (not me) writes it very specifically in a way where all points are covered, just so insurance will cover it. So lame, it would be a lot nicer if we could just walk to the store and buy one! I am sure there will be parts insurance won't cover, but thanks to that benefit, Oliver is covered. (Thanks again!) People don't believe us when we say insurance does not cover everything. Here is an example, Oliver has a feeding pump that allows us to set the amount that goes into his stomach. They cover the pump, but did not cover the feeding bags that the food went into. Oliver has to drink formula that is thicker, so he does not get fluid into his lungs and end up with a respiratory infection. They will cover the food part, but not the stuff to make it thicker so he does not get pneumonia. Strange!! (Luckily, he tolerates the cheaper way to make it thicker)
Oops, off the soapbox again and back to wheel chairs! John and I can decide between an adaptive stroller or wheelchair. Oliver will also start getting X-rays every few months of his hips and spine to make sure they stay straight and in place, another process that I guess is part of the game. Don't get us wrong, we are going to continue working on standing, taking steps, crawling, all of the normal baby stuff. That is in the long and distant future, if at all, but all of this stuff is just stuff right now. Oliver is happy!

4th, Family, and Fun!

2009-07-21T14:37:00.004-05:00

Waiting for the fireworks, Adina was excited until they started!

Grandpa Hanson got a pony for the grandkids. Adina wanted me to have a ride. Poor horse, I think I may have exeeded the weight limit for this ride!

Oliver gets a turn on the horse, he is more like his dad. Not a fan of horses! I should post the last picture of John on the horse too. We rode through the rain forest in Australia when we were dating. John's horse could run...fast! John spent most of his time leaning over hugging the horse for dear life!! It was as fuuny as it sounds!

Adina on the horse. She now wants to ride alone, she will have to wait a few more years for that.

Cousin picture on the 4th! Not easy getting 4 kids under the age of 3 to look at the camera! Kali, Adina, Oliver, and Charlie.

Fireworks start, Adina gets scared and falls asleep. Maybe next year.

Great Grandma Rosie and Oliver. My favorite picture, Oliver looking up and smiling makes my heart melt!

Scott giving Kali Rose a ride in the cart. Kali Rose is already 8 months old!

Adina talking to baby Naomi and Great Grandma Betty.

Adina holding baby Naomi with the help of Naomi's mommy. We were at Naomi's baby shower and Grandma Betty's Birthday party. Adina calls baby Naomi "Baby Homie!"

Great Aunt Faith snuggling with Oliver. Oliver sure loved all this snuggle time.

Kara, Naomi, and Paul. The last two babies born in our families both have bright red hair!! My sister and brother-in-law (Kara and Scott) had Kali Rose in November. Paul and Kara(John's aunt and uncle) had Naomi in April.

Adina helping Grandma Betty with the candles.

Gracia gets a turn hugging little Oliver. What a lucky little man!

This picture of Oliver was taken durning therapy. We always keep the camera close! This day he tasted Ketchup and Pickle Juice! Seems crazy! We learned that children with special needs respond more to very bold tastes just like when they get a massage they need very firm pressure. Seems like a lot but Oliver calms down with firmness. He also sleeps at night with a weighted blanket. Oh the things we have learned this last year!

Hope you enjoyed the pictures! Thursday Oliver has his big appointment with the rehab doctor. I am excited! I heard she is great. We have been having a fun summer so far. Oliver is doing really well with all of the travel and different locations. I will update more after the appointment on Thursday!

RN

2009-07-02T21:08:00.003-05:00

I am officially an RN! I took the NCLEX test on Tuesday, left thinking I failed, was so upset I went the complete opposite direction from my house. I have taken this road before, but I was so consumed with thinking about all of the questions I got wrong I went the wrong way!! I had John convinced that I failed, but I passed!! Yay!! Now I am going to relax and look for jobs. Unfortunately there is not the nursing shortage in Minneapolis that there is most other places. I will find something. Happy 4th!!

Therapy, Vacation, and Don't Mess With Oli!

2009-06-25T11:57:00.005-05:00

We went on our first official family vacation since Oliver has been in the world. We were very nervous as to how it was going to work since Oliver seems to have seizures everytime we leave the house. We made it and actually had such a great time we stayed an extra night! The first night Oliver only slept for two hours, which means we all only slept for two hours. The next few nights went really well and I made it through the half marathon. While I was packing to leave on the trip, the kids were a little too quiet for comfort. I went out to see what trouble was occuring and Adina was acting as Oliver's little therapy helper! It was so cute! She loves her brother so much. I added some pictures of her showing Oliver his vision cards.
While we were in Duluth we went to Canal Park, the Great Lakes Aquarium, Watched/ran the half marathon, and saw friends and family. Adina's favorite sayings while we were in Duluth were 1) Birdie Poop!! (there is a lot of that in Duluth) 2) When I was a kid, I would (she would fill it in with random stories 3) Mommy, I don't want to grow up...
Oliver started new therapy at Gillette last week. We discovered that Oliver really has strong feelings about certain things. He has just been very angry with his new physical therapist. She is great, he just is putting her through Oliver training I guess. He has yelled at her both times, and when she left the room he chuckled a little bit. I wonder if he knows what he is doing, as soon as she came back in the room he started to yell again. Little stinker. Don't mess with Oli!! =) Oliver has temporarily graduated from the feeding clinic. They want him to become more centered before we really push on to the next step in foods. He gets sensory overloaded very easily. They decided that Oliver has such major sensory issues that we need to take a little step back and get him into the Therapy pool. I guess it is the best way to start acclimating him to the world. I guess if you think about it and try and close your eyes for a day, you would become very sensitive to everything.
He does have triggers for seizures we are learning. Loud overcrowded environments and overstimulation. So, if you are ever holding Oliver and he starts to cry and fuss (it is not you, it is Oliver) please don't be offended if John or I take him. It is the best thing for him to stay calm, he just gets over stimulated easily and knows different hands. Again, it is nothing anybody else does, it is just simply Oliver. That is what we have been told and we need to do what is best for the little dude. We still want everybody to hold and love Oliver, and talk and sing to Oliver, and snuggle and touch Oliver, and not be afraid of him. Everything in moderation.
Enjoy the pictures =) More to come soon I am sure..

Who is driving this ship!

This is so boring!

I've got the whole world, in my hands?

Look at that Oliver!

Stop Daddy! Birdie Poop!

Family Picture Time

On the Rocks

Look at this vision card Oliver..

Now this one

Smile Little Man

Cheese!!

Time to paint...everything!

Summer Time!

2009-06-17T22:10:00.006-05:00

Hello Everybody! Summer is finally here in Minnesota and it is fantastic! Here is an update to the last blog. We were trying to figure out his barfing (vomit if you prefer the less crude terminology.) I was sure they were going to jump the gun and go right to changing his G-tube, which goes right into his tummy, to a GJ tube which would go a bit past the stomach. The GJ tube often prevents the barfing, which would assure us that he would not suck fluid into his little lungs. Only problem with the GJ is that fluid has to be dripped in very slowly with the feeding pump because the jejunum (part of the intestine where the GJ tube enters) is not big enough to handle a large amount of fluid. I REALLY do not want to go here because Oliver will always have the machine attatched with few breaks. I also know a surgery would have been another option. Luckily for us, we have a great family practice doctor who knows us well (we talk weekly on the phone) and was a strong advocate. We are trying a med to empty his belly quicker and knock on wood it is working okay. Since he started it we have not had to sleep on edge as much. There are times where we hear him start to vomit and gasp for air and we run to roll him over in his crib to help him clear out the vomit before he sucks it in. Graphic I know, but life. That is that issue.
We went to the neuro. today. We knew our regular was out doing research and would not be there today and then found out he has left for good. When you have a special needs child you develop a very close relationship with doctors so I was pretty bummed. Life goes on and luckily I asked around during clinicals (a few months ago) and our new guy is great (we saw him today.) Oliver still has seizures at times so we are trying to get that figured out. The neurologist told us that life with a special needs child is sort of like being the road runner. When you run off the cliff, you are just fine until you look down. When you look down, that is when "s*** hits the fan." His words not mine, but I do like that, and get it!
We also started a new therapy today at Gillette Children's Specialty Hosp. For now physical ther. and in a month he will see a special rehab doctor. Oliver is getting to the age and size where the stroller is getting hard, he can't support himself. Most likely we will be getting fitted for a wheelchair in the next year. I am actually relieved at this, I think it will make life easier. Also, they will assess if he needs other equipment and do lots of therapy. It was funny, the therapist was rolling a ball that made a funny noise. Oliver was apparantly not a fan. He bobbed his head up and shouted! I was in shock, he never has done this. She rolled the ball again and he was mad, mad, mad, and just screamed like he was yelling, NO!! I laughed so hard I was crying at the same time. It is little moments like that where I give him a hug and a kiss and think I am by far the luckiest mom ever! It is easy to lose sight of what is really important in life. Oliver always pulls me right back in, whenever I get frazzled by lifes little bumps that I can so easily make a mountain, he smiles, or coos, or screams. He just knows how to grab me and say WAKE UP to the good stuff mom!!
I cleaned out the camera and found some hidden cute pics. Here are some good ones!

Oliver was only a few weeks old here. I love this picture.

Two cool dudes! Clearly no shortage in the chubby cheek department!

Beach Time!!

Fun with stickers..and dad!

Up north to see the greats in May (when the seizures started)

Uncle Jim and Uncle Don came from CA to visit! It was great to see them! We miss and love our CA family!

Grandpa teaches Adina to play her favorite instrument, the bassoon. Not sure why that is her favorite, but it is =)

Oliver working hard in therapy with his favorite OT, Susan.

Our niece Kali Rose in a bowl. She is seven months old already!! Such a cutie pie!

Need a Smile

2009-05-24T22:37:00.002-05:00

So I learned my lesson. Never assume that everything is getting better. Last week Oliver was super happy and even laughed a few times. John and I were marveling at how we had finally reached a new "normal" way of life. Last Monday we headed up north to my grandparents to finally celebrate Christmas. Oliver woke up in the middle of the night the first night we were there. He was frantic, throwing up, and just a mess. I don't know that I have ever seen him in so much pain. We decided to come back to the cities just in case this did not pass. The last thing we were about to do was take Oliver to some podunk hospital and try to explain what he has to them. This is why we stay close to Children's. We got home and Wednesday AM he was still miserable and was starting to do little staring spells. Called our doc and she said get into the hospital ASAP. Got to the ER and they figured he was dehydrated but other than that, special kids are hard to figure out (his tummy x-ray was normal). We were told we could go home after we made sure he tolerated food in his tube. I was lying next to Oliver and he did the staring thing right as the doctor came in. I said, "Quick!! Look at this." She said, "You are staying." Oliver was having seizures about every 45 minutes for who knows how long before we got to the hospital. They lasted for about 2-3 minutes each. He slept for about 36 hours straight, seizures make you tired. So again Saturday we were about to leave. Oliver was still not feeling well, but nobody could figure it out. Finally our neurologist came, he had been out of town so we were seeing a few different neuro docs. Our doctor knows Oliver and told us we were staying until we figured this out. So, throughout the course of our hospital stay Oliver had the following tests. 2 tummy x-rays, ultrasound of abdomen, 1 chest x-ray, EEG, EKG(his blood pressure dropped so low at one point we had 4 docs and a few nurses in our room in just a few seconds), blood and urine tests, CT scan of his pelvis, abdomen, and chest, and brain MRI. Whew.. did I mention it took 9 tries to get an IV started? Two anesthesiologists tried, finally using ultrasound to get it started. From this, we learned his brain is the same, it has not grown at all meaning his brain is so underdeveloped and not gonna change, but it has not gotten worse. Abdomen looks fine, he has some lung issues. We are not 100% but it most likely is from when Oliver was seizing and throwing up, he sucked a bunch of fluid in his lungs. It is not pneumonia yet, but we are treating it because they are worried it is headed there (the doc called it pneumonitis). Because Oliver's seizures make him aspirate, which he is already prone to do, we cannot feed him with a bottle, only through the tube. In a few days we will repeat the swallow study to see if he will be able to feed with a bottle again. We will repeat the chest X-ray in 2 weeks to see if his lung issues has resolved. Oliver did have another seizure last night. We are now playing the tricky game of figuring out the right dose of meds. He will have random seizures now and then and he has a 40% chance of developing the type of seizures where he would go into convulsions. This would be bad for Oliver because they apparently are very difficult to treat in kids like him. I got the feeling that it is just a matter of time. So that was the last five days. Oliver went from taking three meds to now being on seven. Two are only for a few weeks the rest are forever. I am physically and emotionally killed. Oliver has not smiled in almost a week and I need that again so badly. He just seems so sad and miserable and it is breaking me to see him this way. It is times like this when I feel so guilty.
We were getting his medications today at the pharmacy and I told Adina that we need to give it to Oliver so he does not have anymore seizures. She said, "Ummmmmm, mommy I looove Cheesers!!" Thank God for moments like that.
Now a busy week of follow up appointment and moving downstairs to our three bedroom apartment.
Nite all...

Oliver is One!!

2009-05-18T09:36:00.004-05:00

Happy Birthday sleepy boy!!

This is a picture at my pinning ceremony with my favorite nursing gals! I finally finished!

On May 1st Oliver turned one!! We did not have a big birthday for him since he had the wonderful Olive Branch celebration only a few days before. My sister did buy him an ice cream cake from DQ, which we all enjoyed.
I have been thinking about Oliver and yes his real birthday is on May 1st, but for some reason I feel like his real Birthday is September 26th, the day we learned and began to better understand Oliver. I don't know if this is weird or not, but I think of that day so often. It was a very devastating day, but also, it was a day that started to make life easier, in a sense that at least we started to understand.
I think that Oliver's Birthday will be hard for me every year. Normally we celebrate everything our child has learned to do in the last year, crawling, walking, waving, laughing, etc. I guess we just celebrate the smaller things he has learned. There are days that I see other kids his age and younger reaching their milestones and their parents are so excited and proud, which is how it should be. I wonder, when Adina learned these things, did we really celebrate enough or were we rushing for her to learn the next thing. Did we enjoy it enough? Were there ever parents in the distance watching, wondering with a bit of sadness what it would be like for their child to be able to do this? It breaks my heart to see how hard Oliver has to work to just bring his hand to his mouth. But we celebrate every single silly little moment like this. Adina is always there as well to say, "Good Job Oliber!"
I hate for this to sound like such a downer, but these are the feelings that came with Oliver turning one, and most likely will come with two and three...
Yesterday Oliver was laying on the floor and I tickled his chin and he laughed!! So sweetly... Whenever I am down I am going to think of that laugh..
Medical Updates... We had a whirlwind of a appointments that came with Oliver turning One. He went to a different Ophthalmologist, she is like the eye doc that all other eye docs turn to when they don't know what the heck is going on. She's known as the "Guru." She told us that Oliver can see some light and a bit of black and white and that is all. We thought it was more but she said that people who are blind find other ways to see things. I think about this now and close my eyes in stores when I am looking for a toy. I am sure I look crazy but I want to feel what Oliver sees. Also, when we thought he was following us, he most likely felt the slight breeze on his face. Close your eyes and wave your hand in front of your face. Did you feel it? Kind if crazy huh. She said Oliver has Delayed Visual Maturation. I said.. ahhh.. so when people ask if he is blind? She said tell them yes, it may develop but not much.
Also, we are going to have another MRI on June 1st to see of there is any change of the brain, mostly bad changes. And a bunch more blood work to check for certain genes. We brought him to a feeding clinic where they did a swallow study, all this time Oliver has been sucking fluid into his airways. "Silent Aspirator" Now we thicken his bottles, problem solved! It took a week to get used to, but now Oliver likes his thicker bottles.
So that is that, I know this was a lot of info! Time to go and enjoy the warm sunny weather!! Mommy and daddy are both done with school (for now--daddy starts on June 1 with summer school). Hope all is well, we have a lot of fun stuff coming up, stay tuned for more pics!

What A Great Night!!

2009-04-29T10:43:00.005-05:00

Oliver's Olive Tree

We celebrated Oliver last night at the Olive Branch Celebration and it was a blast!!! Our friends Joe and Amanda got the whole event together with great music and food and we appreciate all of their work so much!! All of the volunteers were amazing and put so much love and energy into making the night so special for our family. John and I went home last night and all we could really say was, WOW! We are so blessed to have so many people in our lives with such caring hearts. Thank You Everybody. Each and every single one of you are so special to us. Thank You for helping us celebrate Oliver. Words cannot express what having you all there last night meant to us. Oliver had an eye appointment yesterday morning before the celebration and only took an hour nap. I was worried that he was going to have a rough night. He knew that he was surrounded with love and also enjoyed the dinner music and the Peder Eide concert. We all enjoyed the fantastic music and the kids were all dancing up a storm.

Peder Eide snuggling Oliver. Oliver LOVED his music. He was calm and totally digging it. Oliver has always been calmed by music, this was the perfect night. Thank You Peder Eide.

Here is the group of people who helped us celebrate, it was packed house!

Great group of volunteers who realy worked hard!

Joe Johnson who hosted the event snuggling Oliver. Clearly, Oliver was very comfortable.

During dinner we were able to enjoy these gifted musicians.

Peder Eide performing and the kids dancing up a storm.

Grandpa Dave holding Oliver and good friends Ryan and Julie visiting with Oliver =)

Not only the young kids were dancing, the old..er kids were dancing too!

Adina REALLY enjoyed the night, especially dancing with friends and family.

Thank you Joe and Amanda for everything, you both have so many gifts and talents and we are blessed to have you as our friends. Thank You Peder for your fantastic music. Also, thank you for being so caring and loving. We were all touched by the night and it will forever impact our family.
Thank You Everybody.

Olive Branch Celebration

2009-04-22T14:44:00.002-05:00

Just wanted to remind everybody of Oliver's big celebration on the the 28th. It is called "Olive Branch Celebration" because Oliver means Olive Branch. We cannot take credit for that clever idea. That was our friends Joe and Amanda. We continue to be amazed at how blessed we are with loving friends and family! It is the only way we have made it through this crazy year! Let us know if you need tickets.
Oliver seems to be doing okay after his seizure. We are pretty sure that he has had at least one more since the first we noticed. We are keeping our fingers crossed that there is not a lot of abnormal activity on the EEG.

New Bed

2009-04-22T14:34:00.003-05:00

Adina has a favorite new place to sleep. A few nights ago I went in to make sure she was really asleep and not playing with toys, which is very normal. I had a few seconds of fright until I looked in here...

She was in her Dora tent and now always falls asleep in there. We have to carefully lift the play hut up and sneak her into bed. As long as she is asleep we are okay with it =)

Kite Runners

2009-04-22T14:24:00.003-05:00

At play group on Tuesday the kids thought chasing a kite was the best game ever! It was so cute and also a great way to get them all tired out for nap time!
Here are the little Kite Runners, Adina is in the yellow hat.

And after a long morning of chasing kites, time for a hug from her pal Wyatt! They are so cute, they always greet by running towards each other and hugging.

Bummer

2009-04-17T21:27:00.002-05:00

As I was holding Oliver last night we had a bummer moment. He had just fallen asleep in my arms and I noticed the chair was shaking. I thought it was an earthquake at first until I looked at Oliver and it was he who was shaking. I knew it, but we called the neurologist this a.m. and he was pretty sure it was a seizure. Oliver is very high risk for seizures, we knew this, but it still sucks. Oliver has been very irritable this week and not eating or sleeping well. Although after his seizure last night he slept all night. It takes a lot of energy out of his little body.
May 1st we will have another EEG, also Oliver's birthday. Sorry Buddy, horrible Birthday present. Hopefully these do not occur too often, not at all would be perfect, but now we are on the lookout. Until then we are enjoying the weather. Oliver now loves the stroller!! It is great!

Here is another poem I ran across today that I would love to share.

I AM THE CHILD
I am the child who cannot talk. You often pity me, I see it in your eyes.
You wonder how much I am aware of -- I see that as well. I am aware of much
-- whether you are happy or sad or fearful, patient or impatient, full of
love and desire, or if you are just doing your duty by me. I marvel at
your frustration, knowing mine to be far greater, for I cannot express myself
or my needs as you do.
You cannot conceive my isolation, so complete it is at times. I do not
gift you with clever conversation, cute remarks to be laughed over and
repeated. I do not give you answers to your everyday questions, responses
over my well-being, sharing my needs, or comments about the world about me. I do
not give you rewards as defined by the world's standards -- great strides in
development that you can credit yourself; I do not give you understanding
as you know it.
What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder, seeking
answers to your many questions with no answers. I am the child who cannot talk.
I am the child who cannot walk. The world seems to pass me by. You see the
longing in my eyes to get out of this chair, to run and play like other
children. There is much you take for granted. I want the toys on the shelf,
I need to go to the bathroom, oh I've dropped my fork again. I am dependant
on you in these ways. My gift to you is to make you more aware of your
great fortune, your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them. I feel not
so much envy as desire, desire to stand upright, to put one foot in front of
the other, to be independent. I give you awareness. I am the child who cannot
walk. I am the child who is mentally impaired. I don't learn easily, if you
judge me by the world's measuring stick, what I do know is infinite joy in
simple things. I am not burdened as you are with the strifes and conflicts
of a more complicated life. My gift to you is to grant you the freedom to enjoy
things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.
I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Author Unknown

Oliver's Day

2009-04-08T22:14:00.002-05:00

Some very dear friends of our's, Joe and Amanda are organizing (along with the help of Luther Sem) a benefit on Oliver's behalf. We are SO greatful for Joe and Amanda. They have helped in so many ways already! For example, on many occasions we would come home from Oliver's numerous doctor appointments and there they would be with a full meal made for us so we would not have to worry about it, and let me tell ya, Amanda can cook! Besides having two kids she runs her own little catering business on the side.
Anway, many have been asking about it and here is the news. Oliver's benefit will be April 28th, 6:30, at St. Anthony Park Lutheran Church by Luther seminary. The tickets are 25 dollars each and this includes a meal (prepared by Amanda herself), and a concert performed by Peder Eide. I know that this is an extremely busy time of the year, but for those who are wondering, here it is =) It will be just a few days before Oliver's first birthday as well! I am really excited to just have fun and celebrate our perfect little guy.
He is doing very well with his cute little button. I will take a picture of it soon to show the before and after! He is happier with it, we think. There is no longer a long tube that hangs down to poke his little tummy.
Have a Happy Easter everyone!

Button

2009-04-01T14:04:00.002-05:00

Oliver had his little surgery yesterday and it went great! Oliver took everything well, even not being able to eat all morning while we waited for surgery. The anesthesiologist commented on Oliver's ability to cry. We are so used to it that we forget to warn people. He is now rid of his long G-tube and has what they call a Mickey Button. It is just a little disc that sticks out and we can connect and disconnect the tube when we are done. It is fantastic!!!

Whew, That Was Hard!

2009-03-25T20:37:00.002-05:00

Tonight at church I read a letter that I had written for Adina and Oliver about my faith and how they have helped me over the last few months. I practiced and practiced but sure enough I started reading it in front our congregation and totally lost it! It was the hardest thing I think I have ever done. Luckily, Kara, my sister came up and stood with me; I made it through with many sobs and a few snorts too! =)
We are so blessed to be members at our church. They are SO supportive and love Oliver so much. They are the best.
Our Doctor Strike has been wonderful--don't get me wrong, doctors are great, but not seeing doctors is better! Oliver has his mini-surgery on Tuesday to change his feeding tube, and then we will go back on vacation.
Therapy has been going really well! Oliver focused on a toy and followed it from side to side! We were all cheering for him. It does come and go, some days the eyes work and others not. We take the good days and throw out the bad.
Bedtime! Adina got the new book, "Llama, Llama, Mad at Mama." We finally get to read it.
Night

New

2009-03-11T14:35:00.002-05:00

Oliver is starting to get big big big.. He is a little over 20 lbs now, which is normal for his age. Only problem is, he has outgrown his infant car seat, but not the need for it. He still does not have enough head and neck strength to be in a big boy car seat--so, what to do? One of our bigger car seats reclines but we are not sure if there is enough support, have to see what our OT says. Anyway... since we will soon be rid of the infant seat, Oliver is going to have to get used to sitting in the stroller for times we cannot carry him to the car with everything else in tow. Until now, Oliver has hated (HATED) the stroller, but we tried yesterday and he made it, and was happy for 5 minutes!! This was HUGE for Oliver!!!
Also new, Oliver and I have decided to go on "Doctor Strike." I am not going to go into explanation because I am tired and it has already been a long week. Of course we will only be on strike until, well, until we need a doctor I guess! Sometimes John and I really think that some doctors only pretend to know what they are talking about to maintain their gigantic egos, but really don't know the difference between their head and bum!
Yes... we are okay.... Just a little comic relief to get through the day..