Thursday, July 28, 2011
We're outta here!
Well, it's been a whirlwind since I last wrote. We have been busy getting our girl ready for her discharge which is finally upon us-tomorrow we head back home after being away for 7 weeks, 6 of which have been at the inpatient rehab facility. I can't believe that we undertook this journey 7 weeks ago. So much thinking, worrying about and planning for, and now we're on the other side.
At the end of last week, Hannah had a "walking party" to celebrate her ability to walk in her walker again. This was inspired by two other patients who had celebrations to acknowledge their hard work-one boy stood in his prosthetic legs for the first time, and another stood with hip/leg braces after a spinal cord injury. Both events were very emotional and inspiring. Of course Hannah saw all of this and wanted her own "standing party," but therapist told her it would be a walking party, since her goal for discharge was to be able to walk independently in her walker again.
So over the course of the week Hannah practiced walking in short bursts around the gym with some minimal assistance and spotting. The goal is to get her knee fully extended with each step on her own without cueing. She is now wearing her twisty cables again to help this happen without scissoring. Although the tone that caused her to scissor her legs in the past is now gone, the lack of strength in the opposing muscle group and the muscle memory of that scissor pattern remains, so the twisty cables counteract that.
While Hannah was busy practicing her walking and continuing to strengthen other parts of her body as well, she was making up invitations, baking muffins and painting a big sign to put in the gym on the day of her party. My mom, sister, Sam and Isabelle all came, and Brendan and I were both there. She handed out invitations to all of her friends in the hospital and requested music to walk to. We started to worry that the pressure would be too much so we reassured her that whatever she did, it would be great and that Laura (her PT) would be right there to help her. When the big moment came, and everyone was cheering and clapping and the music was blasting, Hannah did awesome! She walked down a straight away in the gym-a runway with balloons from Grammie set up at the finish line-with very little assistance and then she turned around and came back the other way. It was at the end of a busy day (including pool therapy) and she was distracted by all of the attention, but she still did wonderfully and was pretty proud of herself (as we all were!) She still has quite a long way to go before she is cruising around like she was before, but I know she'll get there.
So now that Miss H is beginning to walk around in her walker again, it's all about getting her strength and endurance up for longer distances while maintaining that beautiful gait pattern. Like I said, she still has a long way to go. We saw her neurosurgeon today for the first time since the surgery and he asked where I thought she was compared to her previous function. I said maybe 50%. He reminded me to keep the long view, and that when we came back in 6 months, she would be a different kid. So, since we have been doing the inpatient rehab thing for so long, and it is really time for our family to be together at home again, we are leaving this place that took such good care of our girl and excited to live life again.
Many of the kids that came right around the time Hannah came have already left or are also leaving in the next day or so. There are many kids here now that we don't know; a whole new wave of "newbies" is coming in, and we're the veterans who are on our way out the door. You can see the kids who've been here awhile, that they have progressed as Hannah has, one step at a time, and are ready to move on to the next phase. They are using walkers or walking on their own more and more, wearing their prosthetic limbs all the time, sitting in regular chairs instead of in wheelchairs. Like caterpillars shedding their cocoons, little by little they're emerging from the protective rehab shell and donning their "street selves." For some of them, they're going home completely different from the way they were before they left. Others are healed and back to the same ole same ole. I feel for the kids that have to get used to life on the "outside" in a whole new way. This place is safe and nurturing. They are known for who they are, not the fact that they have a steel halo screwed into their skull or are missing limbs or need a trach to breathe. But at home, it will be different for them and for their families. This will be a transition for us as well, but it's one we're used to so I'm hoping it will be a little easier to bear.
Everyone has been asking Hannah what she will do first when she gets home. "Play with my toys, of course," she says. And then she says, "The county fair will be happening when I get home and I can't wait to go!" I'm so glad we still have some summer left when we get back-we'll have to cram in all the typical Vermont summer things to do before the cold returns.
So here are some things that I am looking forward to when we get home:
-Having all the windows open and being in the fresh, non air conditioned air
-Eating at my table with food cooked with an ample amount of seasoning and that is not mooched off Hannah's hospital tray
-Sleeping in my own bed next to my husband, on my mattress which is not perfect, but is a huge step up from the hospital daybed for parents and the bed that Hannah sleeps in, which is like 2" thick, super mushy and inflates and deflates all night long (to alleviate pressure sores, I guess)
-Not having to tell anyone when Hannah last went to the bathroom, whether it was #1 or #2, and what she ate
-Not having to ask someone for a pass to go somewhere with my kid
-Having all of my kids and my husband with me under one roof
All in all, this whole experience has been hard for sure, but not insurmountable. We could not have done it without all of the support we received from people near and far, most especially my parents who took care of Sam and Isabelle this entire time, giving up their relatively quiet and calm existence for 7 weeks, running around after Sam while he tormented Aunt Gina's dog and answering Isabelle's millions of questions. We all did a lot of learning and growing this summer, and it will be interesting to see how we come together again as a family. Thank you to everyone who sent cards, gifts, e-mails, calls of support...I do have a thank you list going and hope to chip away at it little by little, but please know that your thoughtfulness was so appreciated and helped make the time go by much more quickly.
And now it's back to the business of living life...
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What a great walking party! I love it. I can see H's nice tall legs, and how flat they are as she takes steps in her walker. Great job everyone!
Your docs are right, in 6 months she'll move differently. Hopefully she will be bigger, stronger, and continue to learn to move her body in space. She'll get there.
I'm sorry we never got our card in the mail...I still have it.
Enjoy being home!!
Congratulations to ALL of you this 7 week journey! As a Mom considering SDR for her little one, I have appreciated you sharing Hannah's (and your family's) journey with us!
She has made such awesome progress! What a blessing to return home with a great foundation for Hannah to build upon!
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