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Discussion Starter #1
I know I seem to do a lot of hitting and missing posting here. It has been a rough year. The main reason I am even posting is because once again as you know I have a wonderful little granddaughter, her name is Sierra and last year about this time she was handling two brain surgeries, I am sad to say she is back in Cooke's children hospital facing 2 more surgeries. The seizures stopped for a short time but returned and now are so much more serious. So Monday April 13th the doctors will go back in and put grids in and watch how her brain reacts, after all test are completed they will go back in April 17th and once again remove part of her brain hoping again this will stop all her seizures. She still is very little for her age and this pass year has taken a toll on our entire family. July 8th she will turn 11 and she has been through so much in her young life. Last year some of you went to her hospital blog and posted some wonderful messages that helped her stay strong and also helped me and my daughter stay strong.

This is the link for that site: http://www.caringbridge.org/visit/sierragodwin

And here is a link as well for my blog there are pictures of Sierra and you are more then welcome to join my site, could always use new friends

the link for my blog: http://dawn-gettingtoknowme.blogspot.com/

I hope to see you there and once again thank you for all you have done.

Thank you, Dawn :sad:
 

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I will pray for Sierra and your family that she gets through this ok.
I looked at your blog, she is such a beautiful child.
God Speed as you move ahead through this journey and bump in the road of life.
Keep us posted as to how Sierra makes out.
You will all be in my thoughts Monday morning.:wink2:
 

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Discussion Starter #3
me again

Thank you Karol for your wonderful words. Yes she is a sweet little beauty. She is also my heartbeat. Your sweet words will help me and my family stay strong. Thank you again.
 

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Hi Dawn,

I have wondered how you and your Grand daughter were doing.

Sorry to hear she is back in the hospital facing more surgeries:(.

Sending prayers and hugs your way.
Love,
Lyn
 

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Hi Dawn,
I am so very sorry that she is battling this. How scary it must be for all of you!
Prayers for strength for all of you in surviving this crisis.
Sally
 

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Hi dawn i am sorry sierra is so sick again i put a post on her site last year when she was sick i will do the same again My best wishes to you and the rest of her family Elisabeth
 

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Discussion Starter #7
Happy Easter

Thank you each and every one of you for posting your wonderful thoughts. I am sorry it has been so long since I have posted, but to say this last year has been rough is putting it mildly. Battling insurance companies for getting infusions to getting my new power chair has been one nightmare after another. Trying to find me a new kidney doctor. Dealing with my husband drinking more and more. But mostly dealing with Sierra's seizures and knowing as they get worse the more likely she could suffer another brain bleed or possibly losing her. I just did not have the heart to bring everyone down. Kinda soaking in my misery alone has became my new way of life. But forgive me, and thanks you again for your warm tender words. It means a lot to me.

hugs and kisses, Dawn
 

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Dearest Dawn,
Good to hear from you again, but sorry at how difficult it has been and still is for you and yours.

Never worry about pulling others down, there are always enough people doing well at any one time to support those who need it. We are all up and down by turns.

Please keep us in touch.
x Lola
 

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Discussion Starter #9
Sierra is on her way to ICU they got the grids in and put her on a ventilator to help with her breathing. She is doing good so far. Her mom is holding things together, a lot better then me.

Thank you for all your kind words

Hugs, Dawn
 

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Hi Dawn,

I came here to post and ask how things went and you already updated us.

I have been praying for this beautiful child all morning and I am happy to know she is through hopefully the worst part of this.

Keep us informed as to how she gets along.

Make sure you get some rest. I am sure you need it after today.:wink2:
 

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Hello Dawn

Hang in there sweetheart - you are doing really well. My very best wishes to your family.
She is, indeed, a beautiful little girl. :hug:
 

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Discussion Starter #12
A set back

There has been a set back, they took Sierra off the ventilator which is wonderful but her right arm is drawn up and she is having a great deal of pain.
We are playing a waiting game with this as well, they do not know if it is something temp or if she is going to need a lot of therapy. Her right leg is also drawn up some but not like her arm and she is having trouble talking because she is totally weaken on the right side of her body. The doctors were not expecting this, so all we can do is wait and in the mean time they are keeping her comfortable with meds.

It is like one step forward and two steps back. My heart is breaking for her because she has dealt with this her whole young life and she is being a trooper about it while her Nana is a total basketcase.

I want to keep saying you all are so wonderful to pray for this wonderful child you hardly know. And I want to thank you for being here for the basketcase, ME.

Thank you again and again, Dawn
 

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OK, I must pray harder tonight.:wink2:
She will be ok Dawn, take a deep breath.
Keep us posted as to her progression.
 

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Discussion Starter #14
Restless night for Sierra

Last night Sierra started to run a fever, and throwing up. Sometime during the night she had what they call a silent seizure, which is mainly a seizure with no jerking motions. The seizure lasted between 15 to 20 minutes and they caught it completely on the grids they had placed in her brain. So the grids are working. Sierra has been moved to a seizure ward to be able to handle her more quickly, she is awake and alert just a little foggy about things.

My daughter is resting now and so is Sierra so I will keep you updated on how she is doing the rest of the day.

Thank you again for you sweet words and for being so wonderful during this for me. It means a lot to me to have you all there to lean on.

Hugs, Dawn
 

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Hi Dawn,

I somehow managed to miss this thread but have often wondered how Sierra has been doing. I'm sorry to hear that that's not so good :(

I'll keep you all in my thoughts and pray for her to get some relief from this terrible time.

love and hugs :grouphug2:

Katharine
 

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Discussion Starter #16
Sierra spent the afternoon sleeping, she is still pretty much out of it. Her brain is showing still silent seizures and tonight a EEG tech came in to run a few test on her and to check out her drawn up arm. Needless to say our little redhead was not overly thrilled and showed it, she did not like the tech nor what he was trying to do and she was not thrilled he woke her up.

She is still having trouble keeping her clear diet down, but she did try some jello tonight before drifting back off to sleep. Hopefully tomorrow Morning the Doctors can shed some light on her right side on whether this is something temp.

I got to see her on my daughter's laptop webcam, she looked so tiny in the bed with her head all covered with white bandages, she managed a smile for me before drifting off to sleep. She is afraid they shaved her head completely, and since it is totally covered we do not know the answers to give her.

Hopefully when Shae sees the surgeon tomorrow morning we will be told the next step. Till then all we can do is wait. And pray.

Now for me, my doctor is worried as is my family but my heart and mind is on that little girl right now. I ask myself how can a child be put through so much and stay strong, she amazes me. But I am so afraid this time she is tired of fighting all the time, she seems so angry right now because of her right side and she wants nothing to do with anyone. And I find myself asking God why her. All she has ever wanted was to be a normal little girl, to be able to run and play with her friends and her brother, she never complains just accepts whatever is handed to her. As an adult I find myself feeling that this is not fair.

I am sorry I am so emotional lately, if I am not crying, I am about to start. Anyways onward and upward...... I will continue to keep you posted maybe not so emotional next time.

Thank you again for being here, I love you all.

hugs, Dawn
 

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Hi Dawn,

Thanks for the update and please keep us posted as to how she progresses.

I sure hope moving forward she will continue to improve.

Kids are resilient and often bounce back better then we could.

You are all in my thoughts and please, as hard as it may be take time to rest.
 

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Discussion Starter #18
More test

Sierra was able to keep noodles down, she is sleeping right now. This morning they set up a video camera and gave her brain some shocks to see if it would start a seizure. She had a small one, again one of the silent ones, he saw her brain was reacting too fast which is not good. So now they are letting her rest and this afternoon they will be taking her down for a CT Scan.

The CT is to see if maybe she has a small bleed which is causing her arm to draw up and for her to be having trouble speaking, he is not sure why this is happening at this time. So we wait some more. Have I mention I am lousy at waiting?

Once I know more I will post. I can not tell you how your support is truly helping me through this. To me this is 100 times harder then dealing with my lupus. When it is me, I figure I can handle it but when it is Sierra I am a total basket case. So if I am driving you all crazy with the roller coaster emotions I am sorry.

Alrighty then I am going to actually try to take a small nap. I know do not fall out of your chairs I am actually doing something for me :lol:

Hugs, Dawn
 

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Hello Dawn

I hope you managed to get a proper sleep and that you are able to fit in a reasonable balance of food, rest, and calm between keeping tabs on your little one, her mum, and all your family.

You know, taking care of yourself, and doing things for yourself, all go towards doing the right thing by all your family.

I pray Sierra's speech and limb problems are temporary; that she starts to regain normal use soon. Whilst she is hurting right now, it is good that she is aware of what is going on and that she is able to respond to you all ... even if it is to show she is not too happy right now. Thank heavens she can, and is doing so.

I hope with all my heart her body is simply taking a while to recover from such serious surgery and her fits / silent fits stop soon.

Keep it up. :hug:
 

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Dear Dawn

Im very sorry to hear about Sierra's situation :worried: I just cannot imagine the anxiety you must be going through seeing your little grandaughter so ill.

I hope and pray she will rally around again. She certainly is a little trooper.

Much love to you, Sierra and all your family at this very difficult time.

Joan:rose:
 
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