Elan just finished Speech and has made remarkable leaps in just a week! He is now saying 2 and 3 word sentences regularly. This is amazingly quick - even Joanna his speech therapist is totally impressed. We are going to work on his volume this week. We will see how that goes :). WE need to practice blowing bubbles, blowing things like feathers etc. This is what he dislikes - as all kids this age do. He does love blowing bubbles in the bath tub so maybe longer baths? Only problem with that one... He has been having a habit lately of "going number 2" as Finn puts it - in the tub as it is so relaxing so we will see how this goes :)
Tomorrow is the BIG day - the MRI. I hate the day before (today) and the day after i am a ball of nerves since we are waiting for the call with the results. The past week has been one of the toughest for Erik and me EVER. I think everything just hit us at once. This really is a VERY important MRI and if it is the same as before we have a real shot. Just the idea of a shot is unnerving.
We have only gotten the results one time the same day and typically it takes a few days for the radiologist to look at it then communicate with the oncologist to get back to us - esp. with everyone off this week. Thankfully Elan is one happy fellow and just improving day after day. He doesn't tilt his head etc - all signs things are good. Unfortunately it can be in there with no signs at all, so we only know when we get results. I have been praying from the beginning of this ordeal since Feb 17th when we took him into the ER on for us to be prepared and for me to not be shocked. I am feeling unbelievably positive and good so I hope that is the answer to continued my prayers.
One thing I noticed other families posting on blogs are specific prayer points and I liked that idea!
Please pray for:
1. MRI to be clear (big shocker, right?)
2. Us to continue to have the joy in our lives we have been experiencing
3. Us to use sound judgement with treatment options
4. Us to have a calm heart while waiting for results
5. Thankfulness for the joy and support we have
6. thankfulness for the doctors support of our desires
We have been in contact with around 250 other families in different stages of AT/RT through a facebook group. We are so fortunate to be in the age where we have Facebook to be in contact with other families. If it wasn't for this we wouldn't have heard of Proton Beam radiation and have Elan with us right now. If we didn't get that treatment he would literally not be with us today, so sad to say. We are beyond grateful that the doctors allowed him to get the treatment and on our terms! Only 3 or 4 years ago it wouldn't have been possible to be so well informed about what other families have done and the outcomes.
Many have been so kind and inquired of our Christmas with Elan. So many are without their child this year for the first time and dates like Christmas bring so many emotions for all of us. Honestly thinking of a year from now Elan not being with us is beyond devastating.
As a Christian family we actually made the decision to not do many of the things associated with Christmas. Many find this rather odd esp. since we really put our full faith, trust (and baby's life!) in God's hands as well as being Christians and believe Jesus is our savior. The reasons we decided to not celebrate Christmas is basically summed up in the following link.
http://www.jw.org/en/bible-teachings/questions/bible-about-christmas/
I actually found this of interest as well. It was actually written by a Jewish group regarding the origins of Christmas. I personally found points 2 and 3 are well written and full of scolarly references.
http://www.simpletoremember.com/vitals/Christmas_TheRealStory.htm
To us, even if it is a well respected holiday, the true pagan origins, it being something Jesus didn't institute make us feel it isn't for us. We did however have a great family day! Here are some pictures of our fun at the park. The day started off gloomy and rainy but then it cleared up and we went for 1 1/2 hr bike ride to freedom park and then played there a bit then rode our bikes home. We then had my parents over for dinner which we realized we haven't done since they moved to Charlotte!
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| Elan saying "cheese". |
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| Elan making Raaaarrr noise |
We hope and pray fervently he will be with us this time next year! Please do the same!
Here are some other things we were up to since last posting:
Park on Sat afternoon - Reedy Creek has a whole tree house area that the boys LOVE! (can't get the order right with the videos!) train inside, Elan walking more etc.
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| Other exciting news... bought a MCM couch on craigslist! |
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