Saturday, May 21, 2011
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!
Saturday, May 14, 2011
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!
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!
Thursday, May 5, 2011
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.
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.
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