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| Elan writing a letter! |
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| Finn's preschool line up - wish I would have taken some at the playground but don't want to post other kids w/out permission! |
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| pipe in backyard garden shed burst and created the only "snow" the boys will probably see this year here. |
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| boys with their toys |
Today Finn had preschool again. They were closed Wed thru Friday and Finn kept asking when it would start again... this was with both of us home last week doing fun things! Finn loves his preschool!
My parents are gone for 3 weeks or so to visit my brother and his family in Arizona, then onto friends near them and then to Colorado to my grandparents so it has been helpful in that way too. We planned for them to be gone now since my work is much lighter than normal the next few weeks (even though it is crazier than I had hoped)... but Elan really can't go to a daycare and having a friend watch him for a regular peak selling work week would be next to impossible with his tube feeding etc. So basically I am beyond multitasking. At least it is keeping me out of trouble! Elan is of course getting much better at eating etc but something is working and we don't want to mess anything up right now. It is also cold/flu season and I feel I can be paranoid about it, the cancer card can be played sometimes, right?
My mother was amazing before leaving for their trip and made all of his food for me! I don't know if I could have been feeding him like we do with our lives without her help! I promised to write for all the other AT/RT parents what we feed him but it is basically taken from the Anti Cancer book that is a best seller these days. We do have quite the supplement regime that I think is doing the trick - I will post all he is taking too. I just want to make it completely accurate.
So the past few days Elan has been taking a few deliberate steps - you know, not just the ones where a dad holds out his hand and says come - but actual steps! He is also standing on his own a bit! Of course when his wonderful Physical Therapist, Jennifer, came today he was a total basket case! I attribute it to back to back speech and PT which we are going to change. We have been having them on the same day because my insurance only allows so many visits in one year. It only counts as one if you have them on the same day but if separate they then count as two. How ridiculous is that? Obviously the policy writers haven't been around 2 year old in therapy.
We are trying to get Elan into the government program called Early Intervention. He apparently has qualified since the resection back in February. As to how we didn't know about it - beyond us! We have a case worker with Blume (oncologist), one when we were in Indiana, PT, OT (now graduated from!) and speech but of course we have had MUCH bigger things going on when dealing with things at appointments etc. It took a wonderful new neighbor who has a 18 month old with Down's Syndrome to tell us we should be getting his copays paid for and a waiver for therapy visits. Apparently it is up to age 3 where we don't have a max amount of visits per year which is really the most important for us. It would be FANTASTIC to get both things taken care of as it really is hard to juggle not using too many - esp when the kid needs it! It is also $35 PER therapy. Needless to say it adds up pretty quickly! Elan's PT Jennifer isn't sure why we didn't know (and honestly someone may have off handedly mentioned it at the beginning but I wasn't in any frame of mind to remember anything unless it was life and death importance). Regardless, Jennifer once again was amazing and gave me a number and said she is pretty sure we can use the same therapists etc but just have less hassle. Music to my ears!
Other news, Finn had gymnastics Monday afternoon and Elan and I hung out in the play area for the first time as usually one of us takes him and keeps Elan at home. so of course I scrubbed his hands until they were beet red but he had a good time. There was another little boy and a few older kids, so he had a good time. There was a fire truck he pinched his finger in but so is life. He was so dramatic and normal about it. I had to laugh afterwards as the other moms were so concerned, if they ONLY knew!
So we were there for an hour and one of the other mothers happened to be a 3rd shift nurse at Levine (the other children's hospital here in town). So I decided to tell her about Elan. Another mom over heard and said "him???" as in disbelief. Take that! He looks so great now!
I was able to Skype with another AT/RT mom on Tuesday (yesterday). It was surreal for a ton of reasons but so wonderful! She is the first family i had contact with over live phone call (not email). It is just so comforting to know we are not alone in this, as one can imagine.
For whatever reason we couldn't get our video to work so she couldn't see us but we could see her- so bummed because Elan doing great. We will definitely try it again but I know it would have been good for her because it was her son's very first day of Proton Beam at Indiana! She said if it wasn't for me her little guy wouldn't be there. Really was a touching thing to hear we made a difference to another family. They live in Canada and she said the doctors there told them to literally give up and that their son would be a vegetable if he did radiation and that Proton was no different. So she was like us and had to fight to get the treatment. Thanks to Facebook I was able to give her a real idea of what it does short term so that they felt comfortable going forward with it. Of course Elan really responded well as well as had minimal side effects and there little one already had chemo but hopefully similar experience. It is just amazing in this day and age to be in touch with each other like this! Her son was diagnosed the same month as Elan.
The other cool thing about it was she was in the actual play room of the Indiana Proton Center. So oddly fun to see. She also said our family picture is on the wall and one of Elan. They did Flashes of Hope when we were there so apparently they put them up.
Elan has just been talking up a storm as well. His great speech therapist really noticed a big difference from last week. He is just taking off. It is night and day compared to when we tried it in Indiana, he is actually ready for it now.
Sorry if this is all a bit of a ramble - trying to just get it actually posted!
Here are a few additional photos...
