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Thursday, October 1, 2009

Comment Questions...

I have had a lot of suggestions and questions in the comments, and wanted to answer some that are pretty general in a post entry.

As for Gabriella's stubborness... try to give her activities she won't be able
to resist. You can probably talk to the therapist about it... things such as
time with the therapy dog, swimming, think of some "silly" exercise she likes to
engage in normally. Her therapist should have plenty of ideas as her behavior is
not uncommon. Gabriella having this stubborn behavior is just a way for her to
have some control since she has lost so much control in other areas.

We spend a lot of time with the therapy dogs... she responds so well to them! We have so many resources available like daily crafts and the playroom and outside garden and now that we are no longer in PICU, we plan on utilizing every one of them.

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I don't know what you have tried, but I wanted to offer a suggestion just in case. Have you tried flash cards with words and pictures to help her communicate to you? I once saw something that looked like a Quija board that had letters and some daily words for communicating. Someone in the Hospital must know about that.Getting out game boards and playing games ( chinese checkers, candyland are lots of fun if her arm is mobile) and reading happy stories to her sound like they might boost her morale, so she won't sleep so much.

We had a board they gave us with a ton of pictures for her to point to and communicate with us. Anyone that knows Gabriella knows she is a strong-willed intelligent little girl. That being said- she was MORE frustrated with the pictures than she was with just having us 'figure it out'. We we go the route of questions, pointing and basic signs. Unfortunately, she doesn't know how to spell yet, so we have that barrier... but we are doing well filling her needs. We have had games in our room, but she prefers us reading stories or doing puzzles so we try and do those. Sleeping today has been minimal, and I firmly believe it is the change in atmosphere and therapy thats helping! SO grateful for that!

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...maybe letting her choose as much as she can would help bring her out of her shell. You could ask her to point where she wants to go next in the wheelchair, or have her decide between doing arm exercises or leg exercises. Ask her if she wants to paint or play dolls--anything to make her feel like she has control over herself again. Pretty much every activity can be framed as a choice.

Life in PICU was much different than here in Rehab. All the things mentioned we are now able to do, but over there we couldn't go anywhere or do very much. We did paint quite a bit and played with Barbies, so we had those bases covered. But back to the original idea, yes... we let her choose EVERYTHING. Aside from medical treatment, she has had a say in everything. I have made it a priority to let her be as comfortable as possible, and for Gabriella thats bossing people around. But we have been and will continue to make everything a choice. Hehehehe

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I was on Lovenox for my last 2 pg have lots of great tips if you need them.

Fortunately, she has a small port in her tummy for the injections. Rather than 14 shots in one week, we have one port placed per week. AND because we know when the port needs to be placed, we can numb the area prior to insertion. It reduces bruising, and stress.... which she has had more than enough of!

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Hi Kristi, I don't even know if you read these comments

Every single one of them, and for every encouraging and loving word or prayer, I am indebted to! Thank you to everyone on behalf of Gabriella, Paul, PJ, myself and my entire family!


Nikkie said...

Kristi I have to say it again, you are the strongest woman I've ever had the privelege to know. Gabriella is going to conquer everything that is thrown in her direction! Between you and her, you guys will beat it all!!

Brenda said...

I only know you through reading your blog, but just by reading your blog I have to agree with Nikkie. You are an amazing woman. The Lord's strength shines through you.
Brenda Barone

cici said...

SO happy Gabriella is doing so well.
Asa with all of us I guess there are good days and not so good days.
Tell her we are all rooting for her and are so proud of her progress.
More prayers coming your way :)