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!

Three cute kids, one a little shady

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

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.