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.