I can promise you that sitting here right now, tonight with my whole family under one roof at Home is just the happiest feeling!
How come that something that used to be so normal is now something so precious to us?
Today started out as usual with Connor leaving for his Breakfast Club at 7:30 AM. We were extremely lucky to have our last day here at TCH with Chinonye as his nurse ... how much impact can a person have on how ones day go? Tremendously when you are in the care of someone that truly has a calling for this job. Connor still faced his two medications today of Solumedrol and the Methrotrexate. This meant we did not leave the hospital until 1 PM, however time flew by today with us saying 'Goodbye' to all the people that have touched us in the last three weeks. We also got to see the beautiful Stenzel Family again who were at TCH for another treatment of IVIG. It is such a comfort talking to them as they have been on this journey now for over two years already and have so much knowledge when it comes to this disease.
I am not sure if I mentioned it yesterday but the forecast for today in most of Colorado was a Winter Storm with the possibility of 10 inches of snow. We left the hospital around 1 PM and it was already snowing all morning steadily so when we got on Interstate 25 traffic was moving very slow. About 5 miles on 25 we went into a standstill for about 35 minutes, after this is we were able to drive on at a decent speed. I was glad that Ron was driving and Connor held out fairly well. He did complain a few times about it hurting sitting in the car seat but once we started a Star Wars Movie he calmed down.
The worst of the snow happened about six or seven miles away from our home and here in Lake George who usually does not get to much snow we had about five inches waiting for us. It looked beautiful and when we pulled up to the house a most beautiful banner greeted Connor. My Dad it seemed took his job very seriously for the outside banner while my Mom and Alexander got creative inside.
We all had some relaxing Coffee and Cake and then Connor wanted to walk all over the place even trying out his luck on the stairs (and those he needs still lots of help with).
We did have some challenges with the medications due to the list I have from the Hospital not matching what the pharmacy put on the label when it came to the dosage. We went with the smaller amount for tonight and will call tomorrow to clarify.
Connor and Alexander did wonderful playing together Star Wars Wii for about 30 min and even when they argued it sounded heavenly to us :) After a while Connor got tired and just wanted to sit on the sofa and cuddle and he started getting very fuzzy around dinner time. He complained about pain when he was sitting at the table and that he was hungry but could not eat due to his stomach hurting. We are hoping that this is all due to it being a very busy and stressful day today and that a good night sleep will calm him down....
How many times can a person say THANK YOU? not enough!!! Thank You all so much for traveling along through our journey from almost the beginning of the diagnosis to now when Connor got released from the Hospital after 51 days. What a trip it has been!
I wanted to write today to have a closure to our stay at the Hospital and I will still write on this blog as our journey is far from over but I most likely won't write every day....
Wishing all of you a wonderful weekend! I know we will have one staying home and trying to finding a new 'normal' again :)
Love,
R A C A
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