Quick update

Alright, quick update because I feel like a lot happened the past couple days. I'm on my phone though so it won't be lengthy.

Good news! My girl sits all by herself. Usually she asks for a "chair break".. but yesterday she sat for over 45 minutes by herself, zero assistance, reaching acrosd the table and not asking for a break. You guys.. on Monday, my arm was exhausted holding her up. This is huge!

She can stand on her own, but I don't trust that as well as her sitting quite yet. Her legs still look like they are going to buckle sometimes.

Vivian now has the cutest mini walker to walk with. She initiates steps and uses minimum to moderate assist. She calls her walker a "Blankie holder". She never had obsessions with blankies until.she came to the hospital.. now she begs for it all the time. So she loves that she can hang her Blankie on it and walk. She even has a slight grin on her face while she's walking! Yes!!! Her braces for her feet are doing their job! Her left foot one has a joint that can freely move because that foot is more stable, but her right one is secure since that is the weak foot. My mom found shoes to go over the braces (they are bulky so it was difficult) so we are set up for success now. My mom is literally the bomb. She even brought stuff to the hospital to give Vivi a little foot spa day. So fun!

Now, the not so fun stuff.

Her brace continues to rub really bad. She's got a blister almost the size of a golf ball on her upper back/lower neck. You know those "pimple popper" videos.. very similar. It's ugly to look at and obviously painful. Her lower back actually looks better! Her head has an additional bald spot where it's rubbing.. ugh! So, obviously.. the brace just isn't right for my girl. So.... we are switching to a bulkier brace. It's called a "CTLS" brace.. cervical, thoracic, lumbar, sacrum... brace. All of it. Whatever. I'll take bulky over it hurting her. She doesn't mind it.. and it's not forever. Bring it on.

She took the CT scan yesterday really well. I honestly felt really great about it. So many people doubted that I could get the oral contrast in her.. I began doubting myself. But boo yah!! My kid is the bomb! She had her IV put in without sedation and took it like a champ.. a champ whose mom and 2 other nurses were holding her down. I mean, she recovered quick haha! She received a bolus of fluid in CT and again when we got back. We've got our girl back on track!

So here's the thing... they found a nodule on her lung. It's small.. 4mm. It's calcified.. and even if it wasnt.. it's too small to biopsy. So.. it's just puzzling. At some point, her body had an infection that it walled off.. but it really doesn't give us any explanation of anything. It just kinda leaves us scratching our heads. It's not bad news, I don't think. The docs are just "hitting the literature"... again.

I don't know how to feel. You get news and you expect to have a reaction about it.. I don't know what my reaction should be?? I'm just.. confused.

But I AM in a much better place than I was a couple days ago. We have two weeks until I get my girl home and I AM PUMPED!

Thank you for continuing to follow our journey. I knew this would be a success story, I just knew it!!