First I want to post that the boys and I are thrilled about the news that precious little Elizabeth's Tumor is stable! Coincidentally the Bailey Family was TCH in CSprings at the same time as we were this morning. They arrived for the 6 months MRI Scan for Elizabeth and we were all very anxious and hopeful for some good news. Of course the true Miracle would be a Tumor in her Brain Stem Shrinking or disappearing but we are happy with Stable.....
So as to Connor, he has been in better spirits since he started his Journaling (sp) but is still very emotional. Last night we watched a Show on the Animal Planet and when a Lion was introduced back into the Wild Connor started sobbing so hard we had to stop watching the show. He was so heartbroken about the humans having to let go of the Lion they had raised, that no explaining that he was going back to his true home comforted him. It is really strange seeing how his emotions are so raw on the surface ....
Today we had to get up early again (as in 7 am ;), so we could leave the house by 8:30 am for Connor's 10 am Appointment at the Infusion Center.
We actually crossed paths with the Bailey family in the Parking Lot and it was nice to be able to hug them before we split paths inside the Building.
Connor was a trooper again getting his IV hooked up but it was still disturbing for him to have a nurse today that was nice but a little side tracked. He told her, as he always does, that he does NOT like it when they count down for the poky. He just wants them to stick it in and be over with. Well she must not have taken it in as she started counting (probably out of habit), so Connor tensed up of course. Then it was bleeding out so much that Connor was actually fascinated at the blood everywhere but Alexander who sat right next to him started to cry out of fear for Connor.
I can happily say that everything calmed down after that and the Infusion when great. The boys first worked on some Educational Apps on their iPads and then were allowed to watch Puss in Boots on Netflix. Even the Nurse Station was laughing at the giggles the boys let out during the movie.
After the Infusion we left for our now Traditional Panera Bred Lunch, followed by some shopping and now back home for some school work.
Even Infusions don't cut us any slack in falling behind in school so no rest for the wicket.
Ron went back to work today and will be heading to Anchorage tomorrow. So we are falling back into our normal schedules. Connor will be seeing his Surgeon on Tuesday Morning to show him the poky thing that keeps bothering his incision site. So between School and trips to Denver and CSprings for Doctor Appointments and Therapies we are in the depths of JM again soooo......
....... Please, Please consider voting for CureJM on the Chase FB Page!!!! It would mean so much for Connor and us if we once again would win as we did at the Pepsi Contest. Just think the sooner there is a Cure for JDM/JM the sooner you will have some peace from me and all my postings.
Wishing all of you a good weekend. We are not sure yet if we want to venture out for the Dinosaur Days in Denver or just stay low at home. Right now I am voting for staying home but who knows how we feel in the am :)
Hugs,
R A C A
P.S. I forgot to mention that our baking Bread on sticks over a Camp Fire was a lot of fun and quiet successful. We highly recommend it :)
So as to Connor, he has been in better spirits since he started his Journaling (sp) but is still very emotional. Last night we watched a Show on the Animal Planet and when a Lion was introduced back into the Wild Connor started sobbing so hard we had to stop watching the show. He was so heartbroken about the humans having to let go of the Lion they had raised, that no explaining that he was going back to his true home comforted him. It is really strange seeing how his emotions are so raw on the surface ....
Today we had to get up early again (as in 7 am ;), so we could leave the house by 8:30 am for Connor's 10 am Appointment at the Infusion Center.
We actually crossed paths with the Bailey family in the Parking Lot and it was nice to be able to hug them before we split paths inside the Building.
Connor was a trooper again getting his IV hooked up but it was still disturbing for him to have a nurse today that was nice but a little side tracked. He told her, as he always does, that he does NOT like it when they count down for the poky. He just wants them to stick it in and be over with. Well she must not have taken it in as she started counting (probably out of habit), so Connor tensed up of course. Then it was bleeding out so much that Connor was actually fascinated at the blood everywhere but Alexander who sat right next to him started to cry out of fear for Connor.
I can happily say that everything calmed down after that and the Infusion when great. The boys first worked on some Educational Apps on their iPads and then were allowed to watch Puss in Boots on Netflix. Even the Nurse Station was laughing at the giggles the boys let out during the movie.
After the Infusion we left for our now Traditional Panera Bred Lunch, followed by some shopping and now back home for some school work.
Even Infusions don't cut us any slack in falling behind in school so no rest for the wicket.
Ron went back to work today and will be heading to Anchorage tomorrow. So we are falling back into our normal schedules. Connor will be seeing his Surgeon on Tuesday Morning to show him the poky thing that keeps bothering his incision site. So between School and trips to Denver and CSprings for Doctor Appointments and Therapies we are in the depths of JM again soooo......
....... Please, Please consider voting for CureJM on the Chase FB Page!!!! It would mean so much for Connor and us if we once again would win as we did at the Pepsi Contest. Just think the sooner there is a Cure for JDM/JM the sooner you will have some peace from me and all my postings.
Wishing all of you a good weekend. We are not sure yet if we want to venture out for the Dinosaur Days in Denver or just stay low at home. Right now I am voting for staying home but who knows how we feel in the am :)
Hugs,
R A C A
P.S. I forgot to mention that our baking Bread on sticks over a Camp Fire was a lot of fun and quiet successful. We highly recommend it :)
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