Oatmeal and spinach are great, but … sometimes you just need a little bacon! Amber started the day with Speech Therapy bringing in some new breakfast items – things that are harder to chew and swallow, to see if Amber is ready for a “regular” menu. Waffles, whole strawberries, and … bacon! The bacon was a little tough, but Amber gnawed her way through. Following the successful breakfast test, Amber’s menu has been upgraded; she now can order hotdogs and hamburgers, carrot and celery sticks, chicken nuggets. She still needs to eat slowly and carefully, but it’s nice to have her eating pretty much back to normal.
Unfortunately, Amber has caught a bit of a cold along the way though. Lots of sniffling and coughing, enough to upset her stomach. So, breakfast didn’t stay in her stomach very long. But, the other meals stayed down, and she is doing well.
Then, as usual, on to OT and PT. Man, I wish I had Amber’s perseverance when it comes to exercise. An hour on the swings working her arms and balance, and an hour kneeling and standing, kicking her new rainbow-colored kickball.
We are just a handful of days away from the next big milestones – Monday is the MRI to see how the brain is doing and determine if there is any primary tumor regrowth (we won’t get the results until Tuesday, though), and Thursday (May 3) is the surgery to replace the skull flap. And then, we begin eating the whale shortly after.
But hopefully, with a little more perseverance over the next 2 weeks, we’ll have enough of the elephant eaten that we can come home before we tackle that whale. I think that’s just what we’ll need to renew Amber’s appetite, and re-energize all of our spirits.
Prayers for your Amber…..Prayers for your family…..Thank you for your blog, it helps me so much….
My son, who turned 34 on April 11th was diagnosed on January 31st….We are a bit ahead in the game, but as I read Amber’s story, I relate in so many ways….All the feelings as a parent, yup, they are all the same….I’m stuck on the “Why my Justin” piece…I’m working on that with some outside help, but it is tough….
Also seeing the courage & dedication & willingness to do the hard work in my guy just makes me so stinking proud of him & so very sad all at the same time….
He lives in Maine, but had his surgeries and treatments at Mass General…He completed 30 radiation treatments & 40 Chemo, (by pill) on April 6…..In May he has the all telling MRI, before the next phase begins….He & his wife are living in Mass temporarily so treatments can continue through Mass General
I’m not one to comment on blogs, but I felt I needed to reach out…
I try to find the positives in this heartbreaking situation, and I do….I’ve seen many small miracles happen in the past few months. I believe all the small miracles will add up to one very big miracle….Actually, two….One for my Justin & one for your Amber….
Blessings to you and your family
❤️🙏👍💪🙏💪👍🙏❤️
I hope and pray she can go home. It will help her out a lot ! Keep up the good work Amber ! ❤️❤️❤️
Amber continues to be an absolute inspiration! And, really, bacon is a very important food group! Every day is one day closer to getting her home where she can soak up the love and energy of HOME!!
Bacon……yummy!!! So good. 😊
Sorry to hear sweet girl has a cold. Hopefully she feels better real quick. Praying the MRI results are great and can move forward. Love and miss you all so very much
You are the most amazing little girl Amber. Reading these blogs and seeing everything that you’ve accomplished in this short time makes me feel lazy! Love you and miss seems no your smiling face every day. Remember Amber, before you come back into my classroom, you better get all those “yawns and stretches” out of your system!!! Keep up the great work Amber!
Amber puts me to shame…I was just moaning about going to the gym this morning…..OK, she’s my new role model and I won’t moan about it…Love, Aunt Jean.
Amber is my super hero! Thinking of you guys and praying everyday. She’s doing so great and working so hard. Love you!
So proud of you Amber and so happy that ball is being put to great use! 💜