After, I was a total " freak" about Lizzy's Spinal fusion its taking some time but, she is almost back to herself. I had to realize it was 12 hour surgery , she has Type 1 SMA and sometimes it takes time to regain things back. Watching her in pain and not able to get comfortable hurt my heart. Her voice is in full pitch now. No more quiet days. She was not letting us move her legs on purpose. I thought the surgery has caused her not moving her legs. When, I caught her moving her legs and they were not tight and I thought they were she "laughed" and said "I did not want to move them because I thought it would hurt my back, but it doesn't." She still has some discomfort but over all doing FABULOUS!! She no longer has a hunched back on one side. Amazing, to say the least. I am awed at the difference in her . She can sit up for 5 hours in her power chair on days she wants to. She has not totally gotten the whole concept "she can be" in her power chair every day. She went from maybe lasting 20 minutes in her chair some times to actually eating via- g-tube and sitting up for hours at a time. She is getting "braver" each day. I love it. She runs from room to room in her chair seeing what everyone is doing. I love it!! She is still bathing in her bath chair because the bandage has not come off yet. Its okay "She is getting pretty clean!" she says. her hair is so long!! She made the statement that she feels "Older" since her surgery. LOL She looks so much older. She is simply gorgeous!! She is my "Hero"!!
Lizzy is looking forward to the "chubby red faced" man wearing a red suit making finding his way here for Christmas. Hope she is not too upset she is not getting everything she wanted but..... she has an expensive list this year!! I dread the day she finds out that that "chubby faced" little man is just a "magical innocent myth of a child's belief" . I am afraid to take the magic out of her life. She is a miracle and to take that belief from her to me would be criminal in my mind. Silly, you might think but Lizzy has jumped so many hurdles in her nine years of existence I would hope that we can preserve this myth for at least a few more years. She is so "mature" for her age in many ways but I would like to keep this myth for as long as I can.
I just wish I could help her heart get over some of her disappointments she has experienced. Lizzy,being a child of a single mother its been kind of hard to understand some of circumstances that have occurred. Constant promises that have been promised by a certain people that drop in and out of her life that are broken, just cause me so much anger. We get her through the disappointments with all the love we give her by our family. She seems to understand things we do not understand ourselves. She is such a great kid. Love her with all my heart. I tell her every night " I love her to the moon and back!" I love her more than that.
Here is some more of our heroes in the video below. Grab a box of Kleenex Its finally here!!A way to cure babies through Gene therapy. Hoping to help the quality of life in some of the older kids. Thank you to all the Moms and Dads that went to the FDA to get the trial approved. This is history in the making . I cried like a baby when I heard this was approved for trials to begin.
https://www.youtube.com/watch?feature=player_embedded&v=z1GKTwR2STg
Lets us not forget the older kids that inspired this trial.The babies/young children that passed from this terrible disease. Let us not forget those of us that have fought to save these kids no matter what the medical community told us. The doctors that fought for these kids like DR.Bach, DR.Schroth, our DR. Hough and DR Wang even when they were facing a medical community that was bias and totally not willing to learn. The organizations and families that raised the money for all the research and to help us care for these kids is unbelievable. We all had a voice in these trials even if we did not go to FDA and tell our stories. Our stories are out there and have been told many times. Thank you Vinny and Catherine for your passion to pursue your belief in the gene therapy to face the FDA head on!! I had no idea this was going on at this time but when I heard about it I was so excited.
I pray Lizzy and the older kids will be able to be a part of phase two in the trial for the gene therapy.They have inspired many with their courage, strengths,our trials and errors. Lizzy and many older kids helped so many parents have HOPE. So, much has happened since Lizzy was diagnosed. Its truly miraculous.
Lizzy is looking forward to the "chubby red faced" man wearing a red suit making finding his way here for Christmas. Hope she is not too upset she is not getting everything she wanted but..... she has an expensive list this year!! I dread the day she finds out that that "chubby faced" little man is just a "magical innocent myth of a child's belief" . I am afraid to take the magic out of her life. She is a miracle and to take that belief from her to me would be criminal in my mind. Silly, you might think but Lizzy has jumped so many hurdles in her nine years of existence I would hope that we can preserve this myth for at least a few more years. She is so "mature" for her age in many ways but I would like to keep this myth for as long as I can.
I just wish I could help her heart get over some of her disappointments she has experienced. Lizzy,being a child of a single mother its been kind of hard to understand some of circumstances that have occurred. Constant promises that have been promised by a certain people that drop in and out of her life that are broken, just cause me so much anger. We get her through the disappointments with all the love we give her by our family. She seems to understand things we do not understand ourselves. She is such a great kid. Love her with all my heart. I tell her every night " I love her to the moon and back!" I love her more than that.
Here is some more of our heroes in the video below. Grab a box of Kleenex Its finally here!!A way to cure babies through Gene therapy. Hoping to help the quality of life in some of the older kids. Thank you to all the Moms and Dads that went to the FDA to get the trial approved. This is history in the making . I cried like a baby when I heard this was approved for trials to begin.
https://www.youtube.com/watch?feature=player_embedded&v=z1GKTwR2STg
Lets us not forget the older kids that inspired this trial.The babies/young children that passed from this terrible disease. Let us not forget those of us that have fought to save these kids no matter what the medical community told us. The doctors that fought for these kids like DR.Bach, DR.Schroth, our DR. Hough and DR Wang even when they were facing a medical community that was bias and totally not willing to learn. The organizations and families that raised the money for all the research and to help us care for these kids is unbelievable. We all had a voice in these trials even if we did not go to FDA and tell our stories. Our stories are out there and have been told many times. Thank you Vinny and Catherine for your passion to pursue your belief in the gene therapy to face the FDA head on!! I had no idea this was going on at this time but when I heard about it I was so excited.
I pray Lizzy and the older kids will be able to be a part of phase two in the trial for the gene therapy.They have inspired many with their courage, strengths,our trials and errors. Lizzy and many older kids helped so many parents have HOPE. So, much has happened since Lizzy was diagnosed. Its truly miraculous.
Prayers please for all our sick friends and those that have had surgeries!
" We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
The power of prayer is a magnificent thing.You can feel all around you that people are praying for you . I would close my eyes at times (like during Lizzy's surgery)and I can actually feel people holding hands and feel the prayers surrounding her. It is like we were led through a storm to a safe place . Thank you all that prayed for us and helped us out during these hard times. The past few years have not been easy but we have gotten through .
No comments:
Post a Comment