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Wednesday, September 30, 2009

Oh my.

Well, this is going to be hard. Gabriella is completely shutting down. She is angry, and getting hostile with people. She is sad, and has that trapped look in her eyes. She is frustrated and her body shows it. She chooses to pretend she's sleeping to get out of seeing doctors or therapists. She is allowing herself to sleep constantly when I know she wants to be awake and do things. She holds her smiles back when she wants to smile. She refuses to do some of her most favorite things.

Our battle right now is not to get her words back, or the function in her arm. It's to reinstate that strong will she has to achieve things. I firmly believe if she can find that desire to get better, therapy will be a million times more effective.

We explained to her it is ok to be angry and sad and scared. But it is also ok to be happy and play, too. Goodness, if I couldn't talk to anyone and communicate, I'd do exactly what she's doing. But I also hope someone would be with me to keep me going in the right direction, which is why I will never give up on her or leave her side.

We talked about tomorrow and she agreed to work hard for her teachers and get out of bed. We told her we weren't here forever and they just want to help her. Pleeeease pray. Though we stay strong for her, it is harder than anything else on us to see her shutting everyone out.

We are moved to Rehab. It is very difficult for us. I can tell it is going to be the hardest few weeks here. Rooms are tiny and shared with two people and the bathroom is shared with 4 patients. We pray we get a roommate that's quiet and loving as our last one went home. It smells like hospital, gross and stale. The kids here are difficult to see because they are all suffering. We feel crammed and trapped. Its going to be hard. I've already broken down a couple of times. But its necessary and something we will do for Gabriella to get her back on track. She's scared in this room so we will do everything possible to get her out and about.

Therapy starts tomorrow. I'm excited for the routine, and that we are required to leave the room. Gabriella needs to be forced to leave her bed.

Please, God, let the healing be fast and thorough. We want to take our baby home.

19 comments:

Corey~living and loving said...

Oh me oh my. praying for Gabriella to find peace and understanding, and the will to fight.

The Simmons Family said...

Oh Kristi, I know how cruddy those rooms are in comparison to ICU. It's hard to share, expecially when you're going through such a tough time. Gabriella will find the WILL to do this. We are praying as are many others for her strength, spirit and full recovery.

Patience is Key said...

Oh, sweetheart! My heart is hurting for you right now! I'm praying hard for Gabriella, and for you and your family as well!

Anonymous said...

Hi Kristi, we have never met, My name is Stephaine and I am related to Chris and April Crain, I just want you to know that you and your beautiful little girl are in my prayers!! Be strong for her!!

Anonymous said...

I found your blog through another blog that I have been following. Gabriella is absolutely beautiful and we will continue to follow her story and keep her and your entire family in our prayers.

Anonymous said...

First and foremost, my thoughts and prayers are with you all.
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. You are awesome with her, she loves you and things WILL get better. Stay strong!
~Racheal (April's sister-n-law)

Warren B said...

I think as with any journey, it is sometimes marred by a 'two steps forward, one step back' situation. She may also be reacting to the lack of meds that were dripping into her system for the last several days. She just may need time to adjust. But most of all, I'm sure she is having a hard time processing what is happening to her. I'm a 42 year old grown man and it's difficult for me to process what's happened to that little girl. I can only imagine what she's feeling. The one thing I'm sure she'll never reject or become frustrated with is a hug from her family!

Brenda said...

Dear Kristi,
You don't know me, but I received an email from Amanda Boothby asking for prayer for Gabriella. She included your blog website, which I have been following every day. We are followers of Christ also and are praying daily for you, your husband, Gabriella and your son. I have passed on an email asking others to pray for you here in western, PA.
I pray you feel the Lord's love, grace and strength today flowing to every part of your heart and mind. I pray for quick healing for your precious daughter and continued strength and grace for your husband and son.
In Christian love,
Brenda Barone

Comfypjs said...

Taken from WOF's Sheila Walsh Facebook post....

"Jesus is not only committed to caring for you but he is absolutely capable of doing so." Sarah Young

Praying, praying,praying for God grace for you all.

Juanita said...

I will continue prayer for Gabriella Im sure she will get through this just as she has her other obstacles. it must be so scary for her. Hang in there Kristi I know you will. God bless you and your family during this trying time.

Unknown said...

Kristi, I am praying for you guys and princess G!! you guys are a strong family and you have so much support. I pray that god be with you and grant you comfort and peace. Love you tons! Thinking and praying for you always!

Laurie Kelly said...

My 2 daughters, 6 and 9 follow Gabriellas website everyday. We do it together! I work with Paul and he is truly the humblest caring man I know. We are praying desparately for you and Gabriella 2twice a day with my girls! I dont know how you do what you do. I really believe that God only gives you what you can handle! Please know that the power of prayer and time are the best things on your side! God bless you and your family on this long journey that will lead to nothing less then good health and happiness!

Laurie Kelly (TFS)

unzen said...

Thanks for sharing what going on. I hurt for all that you are going through. I am praying hard for you all. I so wish this road you did not have to go through. Please know we are thinking about you.

Angies Support Team said...

We are praying! :]

MarlaSt said...

Praying for your beautiful little girl Gabriella, and for your family. Your blog has become my daily morning reading, and then my daily morning prayer. God is holding you all in the palm of His hand. Sending love from So. California.

Megan@SortaCrunchy said...

I am praying that God will cover her with His peace and that even when she feels so tired and frustrated that HE will give her the strength she needs to keep working.

Mary Ellen said...

I'm sorry to hear things are not going well. Sending prayers your way ((hugs))

cici said...

This is really hard to hear, I can only imagine what you are going through.
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. I will continue my prayers for a miracle in her life.
{{{{{big hug}}}}}

Anonymous said...

The first thought that came into my head when I read your post is that maybe Gabriella's refusing to smile because she feels like people are trying to "make" her smile (on top of everything else that they are making her do), and by refusing to do it, she's showing that only she can say when she smiles or not.

When I was a nurse, I saw similar attitude changes with patients when they felt like they weren't in control of things. They would shut people out, because in their frustration with an difficult situation, that was one thing that they could decide to do that other people couldn't change. It was especially true with the people who were fiercely independent by nature, as it sounds Gabriella is, who suddenly found themselves unable to do things they used to do, e.g., people who'd had strokes or those who were suddenly bed- or wheelchair-bound.

In those situations, the best thing we could do for them was to give them as much control over the situation as we could--even just simple things like giving them choices between things to eat and do, where to go next in the wheelchair.

Maybe you've already been doing this with Gabriella. If not, though, 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.

My apologies of I'm being presumptuous and you've already tried all of this with her. All the best to both of you; may Gabriella continue to improve with every day!