Inpatient Rehab- Day 5

Well, it's hospital day 13. We are tired of these 4 walls. My baby is OVER IT. But.. we press on because we have a lot of work to do.

We moved to Inpatient Rehab on Friday afternoon. They did an evaluation and set a plan in place. She has Physical Therapy and Occupational Therapy on board. Two 1 1/2 hour sessions a day Monday-Friday (815am and 1pm). Then one 1 1/2 hour session Saturdays and nothing Sundays. So far, she isn't participating any better. Some may even think my kid needs Speech, but she talks JUUUUUST fine.. she just chooses not to most of the time. "Uh uh" and "NO!" are all that most people see. My kid is over it. She's not getting "comfortable" with people. She's not excited to play the games. She is essentially getting nothing out of it right now because she is so uncooperative. She completed her IV steroids last night, so I can no longer blame them. This just may be my kid in this situation. She's scared. She's in pain. Things aren't moving the way they did just 2 weeks ago. She;s wearing a new brace. Strangers come in and poke and prod her. Oh, and she's 2. This just is not her scene. But I continue to work to try to get her back to her baseline.

So far Occupational therapy have just played games, not really involved the right arm. Just trying to develop a rapport with her. And Physical therapy worked with her feet and put her on the tilt table to put her in a stand position. She was exhausted and fell asleep.

I requested anxiety medication to give prior to her therapy sessions. I think if she wasn't so scared, she may participate. Honestly, I could use anxiety medication prior to it because it's a little intense.. and it's not even my body. The doctor agreed. We couldn't get it in time for her therapy session this morning, but we will have it for the afternoon. I'm hoping to see a difference. Otherwise.. I'm jail breaking her out of here. I can't handle seeing my kid so frustrated and miserable anymore.

I'm lying, I won't. I really want to.. but I also don't know what the heck I'm doing to rehabilitate her. And in order to give her the best possible chance.. I know this is where she needs to be.

Friday we have a meeting with everyone involved in her case to talk about her progression... and maybe talk estimated discharge date.

Dr. Mangano, who did her surgery, has been out of town since her surgery. He called FROM his vacation multiple times to check on her.. especially when things weren't going well. I finally saw him last night and got the first good news in days. He has NO DOUBT she will walk again. He said "I did the surgery.. I saw her sensors remain untouched during surgery.. the MRI looks great.. there is no reason she won't walk. She has weakness, and yes... it may take 6 months.. but I have no doubt we can get her back to baseline."

And then I cried, and danced, and called all my people. I mean.. Helllooooo.. THAT IS WHAT I NEEDED!!! I can handle 6 months. I can handle 2 years. As long as I know my kid has the potential to get back to baseline.. I can be patient. He also said he wants the brace on 24/7. Ew. Fine.

We are going to try a couple of new medications. Neurontin.. it's a nerve pill. We think her right side has an excessive amount of pain.. so we are going to try to calm down the dermatomes with that pill. We also are going to try baclofen. Physical therapy noticed her muscles are so tight.. and she is at risk for contractures because it hurts her so much to move. Baclofen will help relax those muscles. (In nursing school, we learned "if you take baclofen.. you'll be on your back.. loafin'!").

I FINALLY got to snuggle my other 2 babies over the weekend. I hadn't seem them in 10 days. That is FAR TOO LONG!!!! Saturday, it was just Aubrey and I. We snuggled, played, acted like fools.. it was great.

Meanwhile, Jake and Vivi met Dierks Bentley!!!! 

Sunday, Bryn was coming back from Tennessee. We planned to have her stop at the hospital on the way home to see Vivian. I became anxious and decided just to meet them down there and let Vivian see Aubrey, too. It was great. Vivian smiled big time. Bryn kept rubbing on Vivi's arms. Aubrey drove Vivian crazy. "Mommy, she touching me!! Mama, she pulling me!". Vivi normally LOVES her sister, but not that day haha!

Sunday night, my mom stayed with Vivian in the hospital while Jake, Bryn, Aubrey and I snuggled at home. Bryn was so grown and sweet. God, I love that baby!!!!

Monday, back to business. We went grocery shopping for some healthier snacks for the hospital, then I had to drop Bryn and Aubrey off to Jake's parents. Not even 24 hours after getting my Bryn back.. I had to give her up again. I'll go back to our house Friday and snuggle Bryn and Aubrey til Monday while Jake is down here with Vivian. Depressing.

But my mom did take Vivian for a ride outside!!! I'm sure she enjoyed it much more than her face shows..

Stitches come out in the next few days. They plan on giving her versed so she'll tolerate it. Midline IV comes out later today. No more IV meds. Whooo!!!

Slow and steady, Slow and steady.