July/August Pics

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

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

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

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

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!

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

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!