So I realized that I put all things into drafts and then went to full version yesterday again.... this made all my posts seem like they were from one day vs over the course of the past 3 months - bother! I fixed it but sorry for confusion!
Today was a good "mommy" day. Erik went to work and I had only a few hrs to do of work myself so had a nice time hanging out with the boys part of the day. I was going to pack us up for Indiana and did get Elan's "trip" clothes ready as the plan was to leave tomorrow. I also wrote a list of what we need to take and realize it is a LOT. VitaMix blender for Elan's food, morter and pestle, knives all on the list. But that is basically all I accomplished. We got a bit sidetracked with a walk, chalk drawing, taking the neighbor's dog for a walk and first slip and slide use of the summer!
We are taking our bikes and have one picked out to have mailed to our Indiana house for a suprise for Finn - his first bike! We also spent time yesterday at Toys R Us to buy a car DVD player for the drive and check out bikes for Finn in person. We will be doing a 7 hr drive to Dubuque from Indiana and a 4 hr drive to Chicago during our stent so we will make good use of it. It was our first time to this trap of a store with kids - man is there a bunch of junk! So much violent stuff too for Finn's age - shocking since he is so into Thomas and such still....
We heard today that instead of starting this week it has been postponed to start date of next Thursday - May 31st. Total bummer! They didn't get the MRI in the mail until this afternoon! Why? WHo knows as it was sent overnight and should have been there Friday AM. So they need the time for planning which of course we want done well. Needless to say we just have to take it and move on.
We are still going to leave on Wed as we will just head straight to Dubuque for the 3 day weekend and then onto Indiana for his start day. We are so looking forward to visiting with everyone and having an encouraging time. We so need to be around everyone and just have our kids have fun. Of course we haven't planned a thing except a call to Cindy V. who offered us to stay with them way back when she lovingly came to Charlotte with Hannah for the surgery. I still look back at those days and know Jehovah sent them for a reason. BOy did they help!
We did find out on Friday that the tumor spread from the MRI last week then the one from 2 weeks prior... now this could just be that the MRI was a STEALTH (love the term!) vs a regular one and picked up more. Because of the results we now have to do a cranial spinal MRI. We will then do a blast of the area with cancer in it. This was a bit of a drag for a day since we were planning on just doing focal but honestly we feel an answer to our specific prayers. We keep praying to make our decisions black and white as well as help us not have regrets and we feel that has been the case with this.It hasn't metasticed like I may have said but spidered to the cistern where it can then go to the central nervous system so we need to nip in the bud. It may also have undetected spreading into the CNS so better do now as horrific results if not and pain for him if we let it go. We will do it with the PRoton Beam so much less side effects than regular radiation since they can pin point exactly where it will stop - so he won't have heart, liver or other organ damage. So really we found out this at the best time and have the best care lined up possible. He will come down 10 to 20 IQ pts but we have been told he will not be uncomfortable or in pain... just like we say - if he will be happy after the treatment for sure than we are open to it. It is so much better than regular radiation. JUst hard at first but really he is brilliant so now will be like the rest of us :). BTW the MRI from 2 weeks ago was $17,000!!!! How insane is that??? Of course that is what insurance is paying and we don't pay a dime but still - sorry Pearson colleagues for next year's insurance hike.
Of course the conversation regarding results with Dr. Douglas in Indiana went on while i was in Raleigh at a luncheon with my NC counterparts and boss Stephen - they were so kind about it though. They really have been such a support. Michael B. even drove me - how sweet is that?
Elan is getting so much stronger and just keeps getting better. I found a gluten free bread with no sugar etc to give him. So he had such a great time this am eating it... then he threw it up b/c ate so fast. Scared the poor boy! He is almost walking on his own but just needs more confidence. Today was a good day!
Today was a good "mommy" day. Erik went to work and I had only a few hrs to do of work myself so had a nice time hanging out with the boys part of the day. I was going to pack us up for Indiana and did get Elan's "trip" clothes ready as the plan was to leave tomorrow. I also wrote a list of what we need to take and realize it is a LOT. VitaMix blender for Elan's food, morter and pestle, knives all on the list. But that is basically all I accomplished. We got a bit sidetracked with a walk, chalk drawing, taking the neighbor's dog for a walk and first slip and slide use of the summer!
We are taking our bikes and have one picked out to have mailed to our Indiana house for a suprise for Finn - his first bike! We also spent time yesterday at Toys R Us to buy a car DVD player for the drive and check out bikes for Finn in person. We will be doing a 7 hr drive to Dubuque from Indiana and a 4 hr drive to Chicago during our stent so we will make good use of it. It was our first time to this trap of a store with kids - man is there a bunch of junk! So much violent stuff too for Finn's age - shocking since he is so into Thomas and such still....
We heard today that instead of starting this week it has been postponed to start date of next Thursday - May 31st. Total bummer! They didn't get the MRI in the mail until this afternoon! Why? WHo knows as it was sent overnight and should have been there Friday AM. So they need the time for planning which of course we want done well. Needless to say we just have to take it and move on.
We are still going to leave on Wed as we will just head straight to Dubuque for the 3 day weekend and then onto Indiana for his start day. We are so looking forward to visiting with everyone and having an encouraging time. We so need to be around everyone and just have our kids have fun. Of course we haven't planned a thing except a call to Cindy V. who offered us to stay with them way back when she lovingly came to Charlotte with Hannah for the surgery. I still look back at those days and know Jehovah sent them for a reason. BOy did they help!
We did find out on Friday that the tumor spread from the MRI last week then the one from 2 weeks prior... now this could just be that the MRI was a STEALTH (love the term!) vs a regular one and picked up more. Because of the results we now have to do a cranial spinal MRI. We will then do a blast of the area with cancer in it. This was a bit of a drag for a day since we were planning on just doing focal but honestly we feel an answer to our specific prayers. We keep praying to make our decisions black and white as well as help us not have regrets and we feel that has been the case with this.It hasn't metasticed like I may have said but spidered to the cistern where it can then go to the central nervous system so we need to nip in the bud. It may also have undetected spreading into the CNS so better do now as horrific results if not and pain for him if we let it go. We will do it with the PRoton Beam so much less side effects than regular radiation since they can pin point exactly where it will stop - so he won't have heart, liver or other organ damage. So really we found out this at the best time and have the best care lined up possible. He will come down 10 to 20 IQ pts but we have been told he will not be uncomfortable or in pain... just like we say - if he will be happy after the treatment for sure than we are open to it. It is so much better than regular radiation. JUst hard at first but really he is brilliant so now will be like the rest of us :). BTW the MRI from 2 weeks ago was $17,000!!!! How insane is that??? Of course that is what insurance is paying and we don't pay a dime but still - sorry Pearson colleagues for next year's insurance hike.
Of course the conversation regarding results with Dr. Douglas in Indiana went on while i was in Raleigh at a luncheon with my NC counterparts and boss Stephen - they were so kind about it though. They really have been such a support. Michael B. even drove me - how sweet is that?
Elan is getting so much stronger and just keeps getting better. I found a gluten free bread with no sugar etc to give him. So he had such a great time this am eating it... then he threw it up b/c ate so fast. Scared the poor boy! He is almost walking on his own but just needs more confidence. Today was a good day!
He ate bread? That's awesome! Can't wait to see you!!!
ReplyDeleteGood to know things are positive I am praying hard. I miss my boyz, Easy E!! My little partner in crime lol;)
ReplyDelete