Rough Week

The last week has been a rough one for me from a parenting stand point.  Not just dealing with my special needs child, but my 'typical' child. At the end of the day I pray really hard and just hope that I am making sense to a 9 year old when half the world doesn't make sense to me.  There's no other job I could possibly take more seriously and there's absolutely no greater love than a mother's love for her children.  I pray I'm leading him on the right path.  I  pray that when he looks back on his childhood he smiles and realizes how incredibly loved he is.  I pray he knows his parents love him "to the moon and back" and always will, no matter how old he gets.  It's a pretty huge weight parents have to bear hoping and praying they are guiding their kids in the right direction at all times and sometimes, it's just plain scary - not to mention exhausting! 

Miss Allie Bean is so happy to be back at school this week.  Unfortunately I'm back to having a lot of concerns about her legs.  It seems to me that she is worse now than before the surgery and that we have gone in the opposite direction - she refuses to put ANY weight on her legs, zero.  We have been doing more stretches, exercises and standing than we have ever done, I've had her in her stander, her bike, her walker and she's wearing those god awful  hound dog braces for hours a day and it's just not making a difference.   I'm afraid sometimes when I'm trying to transfer her that I'm going to hurt her because she's 100% dead weight and sometimes she catches me off guard when I'm trying to maneuver her.  This weekend I wound up in the emergency room myself with an issue with my knee - the whole time I kept thinking I don't have time for this!  I can't have anything physically be wrong with me, I have to be able to lift her and  I have to be able to fire on all cylinders! 

We have been going to physical therapy twice a week since surgery and in two weeks we will be starting another round of intensive physical therapy - we will take her out of school and she will be at physical therapy for 3 hours a day, five days a week for three weeks.  I spoke to Shannon today at her therapy appointment and she  put some of my fears to rest - we still have a LOT of work to do at home, but Shannon said she's gotten so tall, and the fact that she's basically been in casts and immobilizers since the summer has done great things to stretch her but has definitely hindered her in being able to find her quads and the muscles she needs to help support her weight.  It's SO hard to try and look at this big picture.  I'm such an instant gratification person and we have been through a lot since her surgery and I just want to be able to stand her up, have her support some of her weight and know that the surgery has been a success.  The surgeon did say it could take a year to see the full benefits, but we are almost two months post op and I haven't been able to see one iota of a benefit.  I am SO thankful that Shannon did look at this big picture and had scheduled her for a round of intensive - my hope is that the constant repetition every day at physical therapy is going to be just what she needs - and if anyone is going to whip her legs into shape, it's Shannon!

We teased today that I should put in Tammy's (our nurse) job description that one of the benefits of working with Alex is the full gym membership....you lift weight, do squats, get great cardio lifting her in and out of her chair, etc :)  I love that everyone on "Team Allie Bean" has a GREAT sense of humor - it is true that sometimes laughter is the best medicine!!

 Today Alex had a pretty good therapy session - for one, she didn't scream through the whole thing - progress :)  She did some supported standing with her new braces on, but for the most part she got to have a lot of fun bouncing on a ball trying to find her center and pushing herself up using her legs.

She was VERY expressive during this session and it was so fun to interact with her.  It pains me to look at some of these pictures and see how skinny her tiny little legs have gotten.  We definitely have our work cut out for us....

 ...but everyone on Team Allie Bean is up for the challenge!