Just a quick note to let everyone know about the results from Friday's MRI. This is a big one since gives us a read on if Proton Beam did much - well it did! it is barely there! it is down to 1/5th of what it was! We were told 2 MRI's is really the true read but this is great since we already see great results! It could be just residual radiation left over too at this point too. We can't know the true pathology of what is in there unless we did a biopsy - no thanks! It was way beyond Dr. Bell's expectations but spot on with mine :). She really was quite surprised. Now even she is giving us a bit of hope.
We are not NED but really, really happy with the results so far. Hopefully the next one will be better!
Finn had his 4 year old appt this AM which was fun. He is 4 and 1/2 but we at least got him there! It was great for the two of us to have a bit of one on one time. I took him while my mother watched Elan. In the car we drove by the neighbor's house having major remodeling. I pointed out the cement mixer and Finn said "back in the day is that what cement mixers looked like?" He then asked me "what was life like when everything was gray"? He was referring to black and white movies. He was releaved to find out it was just the movie and not reality.
Dr. Lye was as amazing as always. He really is such a great doctor and we feel the perfect one to handle our family right now. When we were in the hospital back in Feb he stopped by 6 or so times and stayed in the room and chatted for quite some time. He made sure to have whoever from the practice was at the hospital drop by to check in too. He did this off hours and has two small kids of his own. Such a kind heart!
Wednesday, August 29, 2012
Wednesday, August 22, 2012
8/21
Sorry for the length in time between posting. This one will be loaded with photos too. A bit out of sequence.... so is the life of a working mom with tons going on! If I spent the time to get them in sequence it would be another week... way to hard to reconfigure... there are several videos too!
Lots has happened mostly good! Here is a quick rundown... First was Friday night - we hosted the neighborhood "Drinks in the Drive" which was so fun! Our neighborhood has several of these throughout the summer and we hadn't had a chance to go before. I wanted to host one since the neighbors have been amazing! When the neighborhood president (Sue) found out about Elan she organized neighbors to drop a bottle of wine off every Friday night - how cool, right? Boy were they good too! I just can't say enough about how fortunate we are to be in our house as well as neighborhood at the time we are. I don't know how we could have pulled this all off otherwise with my parents moving in for the time being.
We of course had showers right before the time we were to have everyone arrive so I was running all over the house making it semi presentable... mind you what we have been dealing with regarding Elan so our home is by no means "finalized" by moving in - but I would rather have people over than not. Oh, and did I mention the next day my parents move to their townhouse they recently bought? Now I am hygienic at least so didn't have to worry there - and my mom scrubbed the bathroom for me earlier that day - she is the best! But still a bit of a crazy mess. Then 5 minutes to 6 (people to come at 6) the rain stopped and we ended up outside again.
Finn did a sign in sheet and name tags - Elan did the greetings - so cute! Best night esp since it was the 6 month anniversary to us walking into the ER... we were originally given 1 to 6 months and who would have thought that Elan would be standing and playing at a neighborhood wine party? Notice below - he took a few steps on his own too the same day! Video of it below.
So this is out of sequence but too hard to move around... the VanBuren's treated us to Panther tickets - so fun and great seats!!!! We were in the liquor seats or "silver club". I still don't get why people pay $100 more a ticket just to drink hard liquor... this was last weekend though - so out of sequence...
Amaya's on Saturday evening.... We also went over to the Amaya's house which was nice esp for Finn. Elan and Finn used to be watched by Marlene right before Elan's condition so the boys are tight with her kids.
Other things over the past week or so...
My parents moved out over the weekend thanks to many overly kind friends! Yesterday just a great day with it finally being not too hot for Elan to be outside so we went to the park!!! Today was a bit of a bummer... Elan woke up super happy but was acting off in the AM when Physical Therapy came. He wanted to go down for a nap really early too. I kept checking in on him and he slept for 3 hrs! I finally went in and noticed he had thrown up which is really scary given all we are dealing with. So I picked him up and acting really odd - kind of like when we took him to the hospital. So off that I called his doctor. Long story short (including the lovely neighbor Bob giving his expert nurses opinion) he wasn't having seizures but was totally constipated! It had been 2 days - which is odd for him but I didn't think too much since it was only 2 days.
Lots has happened mostly good! Here is a quick rundown... First was Friday night - we hosted the neighborhood "Drinks in the Drive" which was so fun! Our neighborhood has several of these throughout the summer and we hadn't had a chance to go before. I wanted to host one since the neighbors have been amazing! When the neighborhood president (Sue) found out about Elan she organized neighbors to drop a bottle of wine off every Friday night - how cool, right? Boy were they good too! I just can't say enough about how fortunate we are to be in our house as well as neighborhood at the time we are. I don't know how we could have pulled this all off otherwise with my parents moving in for the time being.
We of course had showers right before the time we were to have everyone arrive so I was running all over the house making it semi presentable... mind you what we have been dealing with regarding Elan so our home is by no means "finalized" by moving in - but I would rather have people over than not. Oh, and did I mention the next day my parents move to their townhouse they recently bought? Now I am hygienic at least so didn't have to worry there - and my mom scrubbed the bathroom for me earlier that day - she is the best! But still a bit of a crazy mess. Then 5 minutes to 6 (people to come at 6) the rain stopped and we ended up outside again.
Finn did a sign in sheet and name tags - Elan did the greetings - so cute! Best night esp since it was the 6 month anniversary to us walking into the ER... we were originally given 1 to 6 months and who would have thought that Elan would be standing and playing at a neighborhood wine party? Notice below - he took a few steps on his own too the same day! Video of it below.
Last week - Elan with Jennifer - our amazing PT!
 | ||||||||
| Elan in Finn's bed - he is such a big boy and wants to be in a big boy bed. I told him not until he walks and he snickered |
 |
| Last week at the Panther game. AWESOME seats! How loving of the VanBuren's to take us! |
 |
| Love, Love this smile! |
Amaya's on Saturday evening.... We also went over to the Amaya's house which was nice esp for Finn. Elan and Finn used to be watched by Marlene right before Elan's condition so the boys are tight with her kids.
 |
| Amaya's house! |
 |
| Ellysa doing the dishes - so cute! She is 2 months younger than Elan |
 |
| Boys not wanting pictures taken.... |
Other things over the past week or so...
 |
| Our tomato garden a week ago or so. |
 |
| Finn as a super hero - cape another story! |
 |
| Love Elan here - he was bossing me around. |
 |
| at the park yesterday |
 |
| He only wants to sit in a big boy seat now when I am around - no more high chair! |
 |
| Play date this week with the Edden boys - so fun to see Elan acting super normal and laughing all the time! |
 |
| Tent in our living room - of course they wanted to watch the IPad... |
 |
| Bathtime! notice Elan's smile getting more symmetrical. |
 |
| See how well he is standing and putting on his own toothpaste? |
My parents moved out over the weekend thanks to many overly kind friends! Yesterday just a great day with it finally being not too hot for Elan to be outside so we went to the park!!! Today was a bit of a bummer... Elan woke up super happy but was acting off in the AM when Physical Therapy came. He wanted to go down for a nap really early too. I kept checking in on him and he slept for 3 hrs! I finally went in and noticed he had thrown up which is really scary given all we are dealing with. So I picked him up and acting really odd - kind of like when we took him to the hospital. So off that I called his doctor. Long story short (including the lovely neighbor Bob giving his expert nurses opinion) he wasn't having seizures but was totally constipated! It had been 2 days - which is odd for him but I didn't think too much since it was only 2 days.
 |
| Moving day for parents on Saturday! Mom Getting Cross training advise. |
 |
| Sofia and Skylar (one who gave Elan her Justin Bieber savings - we still need to call around to hook this girl up with tickets for December!) |
 |
| Friends that helped my parents move - so sweet of them! Finn helped the whole time too and really worked hard. |
 |
| Vania and Sofia having a water break. |
Fun times below tonight!!!
 |
| Tonight hanging out - Finn wanted to video tape Elan playing |
 |
| Love his annoyed face. |
Subscribe to:
Posts (Atom)