She has lots of opinions, has learned to cry on demand to get what she wants, has learned to operate the DVD player without help -we're not so proud of that one but it has been a long winter.
She can also say I love you in her own version of sign (see the heart?):
She also is becoming more aware of what is going on around her and also what is happening to her as we do all of her medical care. She knows things that might hurt and we have to be very careful to talk her through the things that will hurt as well as those that won't since right now she assumes that everything that comes from a tube or on a q-tip will hurt like the horrible silver nitrate that is used to cauterize her g-tube site.
We have a long road ahead of us and if we aren't careful Ellie could really hate her care instead of the very cooperative little girl that we have now. Through lots of work she will lay still, raise her hands and keep her legs down while we do sterile things which according to some other parents is downright amazing.
Another part of her increased awareness is her understanding that she has tubes and things that other kids have. I'm not sure if Abby planned this but a copy of Madeline has recently gone into heavy rotation for bedtime and Ellie loves the fact that Madeline has a scar. She even points to her belly every time that Madeline shows off her scar which is just great.
Abby attended a conference for work today that had a speaker from Children's who presented a talk on how to best work with kids who are long term patients. As we move along with this adventure, I am sure that we will learn much more about helping Ellie manage with her awareness of what is going on.
In the meantime it is looking like Ostomy Otto will be getting a friend for Ellie's birthday- the Madeline dolls apparently come with a scar.
3 comments:
Kids are amazing. We have a nearly 5year old who had a trach until she was 3. She has the scar on her neck and another on her chest from where they did the rib graft to repair her trachea. Then we have Marissa who is 3, sbs, multiple surgeries the typical belly with the transverse scar and the CVL and GT. Marissa and Emily(5yr old) will sit and touch and point out each others and their own scars to one another. Even though neither of them are very verbal it obvious that they share that bond and camaraderie. I'm sure Elli's will love having Madeline around. When we first put a MicKey in Marissa's baby doll she would spend hours lifting baby's shirt and fingering the button and then lifting her own shirt and doing the same.
Y'all are such amazing parents, I know that you'll find a good path, as you always have. Ellie's lucky to have you guys (and we're all lucky for the lot of you).
We took Eithene's baby and put a G-tube in it. We also used one of the extra preemie ostomy bags we had left over and I sewed the ostomy bag onto the baby- so Baby has a 'tubie" and a 'baggie" just like Eithene. she LOVES it and spends hours changing the cotton balls in baby's bag, and playing with G-tube extensions for baby's button. Maybe Ellie would like something like that? I can send you a pic of the doll if you want, and if you don't have any of the tiny ostomy bags I'd send you one fo those as well. We have a few left. Hey, maybe Ellie's could have those plus a broviac ;)
Jessica
www.caringbridge.org/visit/eithenerosehilliard
www.caringbridge.org/visit/eithenerosehilliard
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