As you will see in the pictures below, today started out with us not having to use the Wheel Chair!
We had to get up early in order to have breakfast and then head out the door by 8:30 am. I know, I know ... for all your normal people that might still be considered late but for us spoiled Home Schoolers this is way to early - haha
We arrived at the Infusion Center a bit before 10 am and were happy to have some time to get some treats for the Staff at the Center for Cancer and Blood Disorders. Connor went and picked out some Red Roses and a box of Chocolates and I can tell you it was a huge hit. It was something so minor to do but so wonderful to show them all how happy we are to have them look after Connor.
Connor had five vials of blood taken and then was hooked up for the 1 hour Solumedrol Infusion. It all went smoothly and I was even able to have Connor complete five of his 11 pages of school today. They only huge complain for Connor was my already anticipated taste bud challenge for him. Whenever Connor gets Steroid Infusions he complains of having a metallic taste and no exception today. We tried crackers, juice, fruit gummies and a lollipop but no luck covering it up.
The new Infusion Center by Briargate Pkwy is by the way very impressive. It has all the conveniences that TCH offers with hardly any 'traffic' there. All the rooms are private and have Cable TV and Video Games. There was also the open area where you can socialize if you feel like it, plus a huge kitchen with all kind of goodies.
Now while we were there, there were only about 5 other children there as well. Most kept to their rooms like we did but one teenage boy was sitting in the open area in a Recliner. I have to tell you it is always hard to see little kids being hooked up but I admit it really put an ache in my heart to see this 16 year old boy sitting there all by himself. I was wondering if he actually drove himself here and for how long or how many years has he had to deal with this?
Could this be Connor in 8 years?
So much sadness comes with being in a place like this and so much of my gratitude goes towards the people working there.
How many times am I going to be reminded of how little I once knew about places like these?
After the Infusion was over we headed to Panera Bred for Connor's favorite lunch place. He ordered Macaroni and Cheese and his favorite Tomato Basil Soup. It was hard to see how excited he was about the food to then watching him hardly eat anything. His taste buds and tummy just were not up to it and I promised him we would be back when he is feeling better.
Then came the time to head to the Therapy Center on the other side of town for Connor's first Water Therapy. He had a lot of fun but was tired and exhausted, so his focus kept going away. Luckily he has a great Therapist who said to not worry and that hopefully next week we can get more work in. She was kind to tell me to write down how Connor was feeling for the next few days so she knows if she can push harder or if we need to back off some.
We finally arrived back at Home by 4 pm and I just wish I could have headed straight to bed. I hardly did anything physical but my mind was so tired ...
However, since we do not want to fall behind when it comes to school, Connor, Alexander and I trotted up the stairs, after our Coffee and Cake break, to put in one more hour of school. We finished about 8 pages out of the 11 so looks like tomorrow will be a looonnnng day in school.
Thanks for following along and wishing you all a good night :)
Hugs,
R A C A
We had to get up early in order to have breakfast and then head out the door by 8:30 am. I know, I know ... for all your normal people that might still be considered late but for us spoiled Home Schoolers this is way to early - haha
We arrived at the Infusion Center a bit before 10 am and were happy to have some time to get some treats for the Staff at the Center for Cancer and Blood Disorders. Connor went and picked out some Red Roses and a box of Chocolates and I can tell you it was a huge hit. It was something so minor to do but so wonderful to show them all how happy we are to have them look after Connor.
Connor had five vials of blood taken and then was hooked up for the 1 hour Solumedrol Infusion. It all went smoothly and I was even able to have Connor complete five of his 11 pages of school today. They only huge complain for Connor was my already anticipated taste bud challenge for him. Whenever Connor gets Steroid Infusions he complains of having a metallic taste and no exception today. We tried crackers, juice, fruit gummies and a lollipop but no luck covering it up.
The new Infusion Center by Briargate Pkwy is by the way very impressive. It has all the conveniences that TCH offers with hardly any 'traffic' there. All the rooms are private and have Cable TV and Video Games. There was also the open area where you can socialize if you feel like it, plus a huge kitchen with all kind of goodies.
Now while we were there, there were only about 5 other children there as well. Most kept to their rooms like we did but one teenage boy was sitting in the open area in a Recliner. I have to tell you it is always hard to see little kids being hooked up but I admit it really put an ache in my heart to see this 16 year old boy sitting there all by himself. I was wondering if he actually drove himself here and for how long or how many years has he had to deal with this?
Could this be Connor in 8 years?
So much sadness comes with being in a place like this and so much of my gratitude goes towards the people working there.
How many times am I going to be reminded of how little I once knew about places like these?
After the Infusion was over we headed to Panera Bred for Connor's favorite lunch place. He ordered Macaroni and Cheese and his favorite Tomato Basil Soup. It was hard to see how excited he was about the food to then watching him hardly eat anything. His taste buds and tummy just were not up to it and I promised him we would be back when he is feeling better.
Then came the time to head to the Therapy Center on the other side of town for Connor's first Water Therapy. He had a lot of fun but was tired and exhausted, so his focus kept going away. Luckily he has a great Therapist who said to not worry and that hopefully next week we can get more work in. She was kind to tell me to write down how Connor was feeling for the next few days so she knows if she can push harder or if we need to back off some.
We finally arrived back at Home by 4 pm and I just wish I could have headed straight to bed. I hardly did anything physical but my mind was so tired ...
However, since we do not want to fall behind when it comes to school, Connor, Alexander and I trotted up the stairs, after our Coffee and Cake break, to put in one more hour of school. We finished about 8 pages out of the 11 so looks like tomorrow will be a looonnnng day in school.
Thanks for following along and wishing you all a good night :)
Hugs,
R A C A
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