Two weeks home (6 weeks post-op)

Alina is doing GREAT! She is regaining strength very fast and is quickly resuming her regular activities. Her only restriction right now is walking outside of PT. She still needs quite a bit of proper gait training, and that needs to be in PT. While we've been 'cleared' to allow her short walks in her walker as long as she maintains a proper gait, we've only let her a few times.... her hips still need quite a bit of strength so her feet done rotate in. She's able to walk so much easier though, easily walking heel to toe, moving her legs easier and her knees don't hyperextend anymore!

She is doing all floor activities independently.... laying, rolling, sitting, kneeling and knee walking. She's also able to half kneel with support, and starting to be able to do it on her own! Before surgery, this was impossible for her even with full support. Now she can move her foot up and kneel with little effort. The change in her body is phenomenal.... the ease in which she can do things. Things she could do before, she now does easily without effort. I'm so excited for her, she is so motivated to move and walk, run!

She's going to PT five days a week; Two days in the pool, three in the gym. The PT's all work her very hard because they know her potential, and they are all pretty amazing too. She always has a good time at PT and is proud of herself for all her hard work.

Great tall kneeling her last night at Gillette

Alina has good friends!

Half kneeling, and talking!

Tall, straight standing her last night at Gillette

Alina got a medal at Gillette PT for meeting her goals!

pipes

HOME!!

Little Sister was happy big sister was home!

Rental Wheelchair

Matchies!

Post op week 3, pictures and videos

Here are a few pictures from the last two weeks, and a video of Alina in the robault (robot) machine that helps with proper gait and muscle movement. It starts out with 100% support, and then gradually they move it down so she's doing most of the work and the machine is just guiding. Its very cool and it seems to really help her get that proper foot movement. Also there is a video of her walking with the 'ski poles'... you can really see how straight her feet are compared to before surgery. Its pretty amazing, and she's working so hard to gain back her strength. (and again, these are horribly out of order and blogger stinks at rearranging.)

She is set to be discharged on the 10th! She's so excited to get home. We've had some great roommates this last week and the little girl we are rooming with is the same age as Alina and had the same surgery two weeks after her. Its been fun getting to know them, they are a great family! They are here from another state so I know their stay is more stressful than ours, and I hope it all goes quickly and smoothly for them, too. Hopefully we can all stay in touch when we go home and maybe the girls can be penpals or something!

Finally some nice weather this week!

Great tall kneeling!

building up strength

AP marveled at the snow-less yard!

And then wondered 'what is this green pointy stuff sticking out of the ground?'

The sand is finally unfrozen!

Two big brothers to help

Straight feet!

dress up! Waiting patiently for big sister to come home.

Spring arrived for a day then it snowed again.

Crafts... they made a 'stress ball' out of surgical gloves using flour. It was really fun when it popped two days later.

Having a latte in the cafe downstairs

Patronizing with the nurses. :)

Post-op, week 3!!

Here we are, three weeks post op! Alina is ready to go home, and will be busting out of here on Friday!!
It will be hard to leave, though we are so ready! We've made some great friends here, and hope to keep in touch! I have lots of great videos and pictures, unfortunately blogger won't let me upload them from my phone.

So far she's doing perfectly! She's able to roll, side and tailor sit, short sit on a bench or chair, dress/undress, walk with help, crawl, knee walk and half kneel to stand with support!! She says her legs feel "wiggly", which we've assumed is because the spasticity is gone, she feels "normal" but to her is very different.

We are excited to watch and help her progress from here. She's certainly amazes us every day.

Post-op, day 5

Alina is doing very well. She's wire/tube/monitor free and completely off all pain meds but the ones to help settle her legs (because they are digging around in the nerves during surgery, post rhizotomy patients can have muscle spasms for a while). She's been on her prone cart, they've raised her bed up to partially sitting position, and she starts PT tomorrow!

Right after checking in

day before surgery (these are horribly out of order)

sleepy girl after surgery

post op day 2, got out of the room on a rolling bed!

right before surgery

post op day 3, real clothing!!

post op day 4, prone cart

visitors!!

Surgery update

Alina's surgery went well. The doctor was pleased with how everything went. She went into surgery at 7:30 am and we went to meet her in the PACU at 1pm.

See resting comfortably in her new room up in rehab. Saturday she starts on the prone cart and light therapy. Monday she wil be starting therapy and working between the prone cart, wheelchair and rolling stander.

Overall, she's doing ok. Crabby she can't get up but enjoying the princess treatment. :)
If you would like, you can add me as a friend on Facebook for pictures and more updates. I just have my phone here right now and blogger doesn't like it.

Thank you for praying for Alina, and all the good thoughts and emails and texts. We appreciate them.

Also- please consider supporting the Ronald McDonald house.

The big 6!

Birthdays and holidays are so much fun with Alina now. She understands them and knows what to expect. She looks forward to the traditions and of course, the gifts and cake! She's also really looking forward to her party this weekend!

Blowing out candles on her ice cream cake

I'm 6!

Easy bake oven stuff!

All I wanted for my birthday was this silly Care Bear!

Presents!

Pom Poms!

Bucks from Grandma!

Care bear!

My Auntie sent me new jammies and a bath robe for the hospital!

My Easy Bake Oven!

On April 10th, Alina will be going into the hospital for another surgery. This one is a doozy. She will be in the hospital for 6 weeks in therapy and rehab after the surgery. She will be having a Selective Dorsal Rhizotomy. This is her neurosurgeon explaining a rhizotomy in a short video (there are a few frames some might find graphic of the actual surgery. Just a fair warning... my kids watched it and it didn't gross them out!)
Gillette Video about Selective Dorsal Rhizotomy

Needless to say, we are a bit overwhelmed with not only the surgery, but also the long hospital stay. Dad was able to take a month off work, and we are blessed to have Grandma come to stay during the surgery and a few days after so we can stay with Alina in the hospital. So things will hopefully go very smooth and the kids will be able to continue on their regular routines. And we'll be able to switch off at the hospital so one of us doesn't have to stay the entire time and someone will always be with her.

Alina is asking a lot of questions about the surgery and recovery. She knows what the hospital and surgery is all about now, having been through the brain surgery for hydrocephalus twice. We are trying to be reassuring and answer her questions in a way she will understand. We appreciate your prayers. The closer we get to her surgery, the more we see how many people care about her. I will be updating here with her progress for her many admirers! :)

Skills

She's got 'em. :) (sorry for the sideways video, I don't know why they won't flip like usual)

She was also fitted for AFO's last week, and they should be ready in the next week or so. She's just all over the place already, and walks great if she has shoes on, so no doubt she'll be running circles around me when those AFO's get here. Its funny to watch her little self go...she's so determined and strong willed!

This little light of mine...

She's letting herself shine!

While we got a lot of smiles and cuteness in Ukraine, what we didn't see was much light in those little eyes. AP has been home for two months and there is a little more than a spark there now. :) The girl has spunk, she's lively and full of attitude. She loves to explore and is always on the go.

Since coming home two months ago she has....
gained FOUR pounds
grew 1.5"
has better color in her skin and her hair has grown a lot!
can get herself into a sitting position
learned to crawl
pull to standing and cruise furniture
dance her tiny tush off!
walk behind her push toy or while holding our hand
can say 'mama, papa, dada, brata, kitty, up, nyet, da, ums, all done, baba, nigh nigh, hi and bye!

And has completely stolen our hearts. She's such a comical little thing. She squeals when someone touches her things or is sitting with mom or dad and she thinks she should have us all to herself. She came with the 'insta-pissed' feature... zero to completely screaming ticked off in under a second! She's figuring things out very quickly and understands English very well.

I had hoped to be better at updating the blog and putting up pictures but in my two free minutes a day I use the bathroom or have a drink (not that kind of drink though some days I'd prefer it!)

The kids are doing well overall. Everyone is healthy and having a good year in school. Alina finished 5 weeks of serial casting to stretch her feet and now has new AFO's. We don't love them yet, and we need to have a few more adjustments made to them next week, but overall I think they will work out for her once we get all the kinks worked out. Plus she got new Lego shoes and she's pretty proud of them. :) We go for another MRI this week and then they will be discussing the SDR surgery more and hopefully getting it scheduled.

And some obligatory pictures of the last month.

Got marshmallows?

The boys enjoying the warmer weather

Alina drove. :)

That about sums it up.

Alina lost her first tooth!!

New AFO's

I am NOT throwing these markers on the floor!

Sisters  <3 br="br">

Future physical therapist!

Pretzels!!

Anna's new handwear

Mommy made me a dress!

And thats as good as it gets! :)

Alina was annoyed her baby was being a sourpuss!

Cool toddlers ride rear facing!