This blog post is part of a series that I began for telling our story. You can read the first post here.
From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.
We went from Samantha breathing on her own to eating on her own. Things were definitely looking up, and I had hope for the first time in ages. This was when I began to breathe again. We moved from the step-down unit to a regular room, which was even better. We were in an amazing children’s hospital with so many services, and finally began to appreciate a lot of them.
From CaringBridge on May 2, written by my sister:
Samantha had a busy day today. She had an EEG this morning (see picture) which was miserable for her. This showed that she has epilepsy – because they have found this it may require some adjusting of medication. They believe this is a result of all the brain swelling and not something she was born with. She also took a bottle today (see picture)! 55 cc’s – yay!
Most of her physical symptoms are showing up on her left side of the body – the MRI shows that the primary damage is to the right side of her brain (this is after reviewing the MRI). PT will be working with her on strengthing and adjusting to this. OT is working on bottle training with her – but so far so good with that! :0)
Also, she is up to six pounds! Praise the Lord – thanks for the continued prayers!
From CaringBridge on May 3, written by my sister:
Samantha looks much different today as she now no longer has the feeding tube in her nose which means her face is free from all tubes/wires. The only wires she still has are the monitors and the port for her medicines.
The head fellow from neurology came to talk today and she started to talk about long term prognosis. Because of the severe damage that they see to the thalamus it makes Samantha’s prognosis much more complicated. Whether she will be able to walk, move, or feed herself is all very questionable. However, we also know that they weren’t sure if she would live, breath, or eat on her own and look at the great progress she’s made!
She was also moved today from the 9th floor (PICU/intermediate care) to the 10th floor (regular room, long-term care) today.
It’s hard to pass judgements on the limitations she may or may not have, but the doctors also want to paint a realistic picture of what children with similar MRI pictures have to live with. Once again it’s one day at a time, and plan for the worst but hope for the best.
Please continue to keep Samantha and Stephanie & Travis in your prayers. She is such a strong fighter but has a long road ahead of her. Physical therapy (PT) is already working with her to help her to strength and move and give her tummy time.
I will post a few more new pictures on here shortly – thank you for checking in and for your continued prayers!
Next post coming tomorrow.