"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

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

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

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

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

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

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

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!!