Monday, July 27, 2009
Monday, July 20, 2009
Not Me Monday!
*I did not want to beat some one senseless at 11:15pm last night for their complete disregard for others. Nope not me!
*I did not vaccum my house 4 times this weekend out of necessity only to have my now walking "girlzilla" toss the remainder of her dinner on the floor and then I left it to be eaten by the vaccum today. Nope not me!
*I did not nearly have to ground my 7 year old for the first time this weekend (only for the day). Nope not me!
*I did not listen for my neighbor to start her shower and then "race" her to see who would finish first. Hey in my defense I can't get her to say HELLO to save my life. I am a little socially enept these days. Nope not me! :)
* I didn't giggle at the neighbor boy who picked up dried dog poo in the yard and turn around and go inside. Nope not me!
* I don't giggle with delight at watching my baby chub chub walk in her walking shoes with her chubs jiggling as she sways back and forth trying to get balance Nope not me. That would just be mean:)
* I do not fight my urge to update facebook status with every new thing Jac Jac does:)
Nope not me:)
Love, Danielle
*I did not vaccum my house 4 times this weekend out of necessity only to have my now walking "girlzilla" toss the remainder of her dinner on the floor and then I left it to be eaten by the vaccum today. Nope not me!
*I did not nearly have to ground my 7 year old for the first time this weekend (only for the day). Nope not me!
*I did not listen for my neighbor to start her shower and then "race" her to see who would finish first. Hey in my defense I can't get her to say HELLO to save my life. I am a little socially enept these days. Nope not me! :)
* I didn't giggle at the neighbor boy who picked up dried dog poo in the yard and turn around and go inside. Nope not me!
* I don't giggle with delight at watching my baby chub chub walk in her walking shoes with her chubs jiggling as she sways back and forth trying to get balance Nope not me. That would just be mean:)
* I do not fight my urge to update facebook status with every new thing Jac Jac does:)
Nope not me:)
Love, Danielle
Thursday, July 16, 2009
Thankful Thursday
Some things I am thankful for:
*my vaccum
*our coffee table
*mixed blessings
*faith
*pain releavers
*my vaccum
*our coffee table
*mixed blessings
*faith
*pain releavers
Thursday, July 9, 2009
It's Praise time people!!!!
I just got off the phone with Billie Jo at the medical supply place about Jacs prone stander. We have been waiting almost 7 months for this equipment that will allow her to sit and stand with support! Origonally we were told it could take 3 months to find out if her insurance would cover it. I have been in contact with this gal several times this week to find out if we where going to be approved. She was a trooper and caslled the state and lit a fire under their bums. She got a call this morning from the state. If we had to pay out of pocket it would be $2443.00!!! We had been told that the state was denying these across the board right now due to budget cuts. NO NO NO!!! GOD moved mountains and we where APPROVED!!!!
I am so stinkin giddy right now!!! We should have the prone stander in 2-3 weeks and it will be delivered to our home!
Thank you Jesus for your provision!!
I almost posted this entry and realized that its THANKFUL THURSDAY!
Thankful for
-the approval of the prone stander!!!!!!
-muscle biopsy results
-A GOD that moves mountains for his children!
I am so stinkin giddy right now!!! We should have the prone stander in 2-3 weeks and it will be delivered to our home!
Thank you Jesus for your provision!!
I almost posted this entry and realized that its THANKFUL THURSDAY!
Thankful for
-the approval of the prone stander!!!!!!
-muscle biopsy results
-A GOD that moves mountains for his children!
Wednesday, July 8, 2009
Muscle Biopsy Results
I tried to get on yesterday to update but the site was having issues.
Are you ready for this????? The results are in and ALL tests came in within NORMAL RANGE! For those of you who don't know the muscle biopsy was testing for mitochondrial diseases. The mitochondria are the "power houses" of our cells. ANYWAYS I want to share with you my first reaction.
Dr. Raff- "blah blah blah blah all tests came back normal blah blah blah"
Me- "THIS IS SO COOL!"
Dr. Raff- "it is?'
Me- "YES! This is just another testiment to God's power, it proves yet again that man nor moderne medicine does not know everything. God made us, he made us so intricate that only HE knows us completely!"
The Dr was very sweet and answered any questions I had. I really like him, anytime we see him he is very genuine and takes his time with us.
I know that my reaction seems odd. Shouldn't my first reaction be frustration? After all Jackie is 27 months old, we started testing at children's when she was 9 months old. That is 18 months of testing and waiting. Believe me when I say I have been frustrated, angry, scared but everytime I fall into those feelings God has been there to pull me out of it. I continue to learn through this whole process that GOD is HUGE.
My Grandma Clara and I where talking about this and she spoke of how she prays for healing for Jackie all the time. As I know many others do. She went on to say that maybe Jackie did have something devistating and she is being healed now. After all she is making improvements and is doing new things all the time:)
I learned yesterday that my Dad doesn't want Jackie to be diagnosed, he feels like it would label her and she wouldn't be just Jackie anymore. She would be seen as said illness and Jackie. I see his point and I can agree with it. As a matter of fact my husband felt the same way and maybe still does to some extent. My thought was that I wanted to do every test possible that would not harm her if it would help us help her.
To spin off of my Dads thoughts, Jackie is a miracle. At the age of 9 months her body behaved like a wet noodle. NO consistant muscle tone and now at just over two years of age she rolls over, holds her head up and is sitting really well with minimal support, she is finding ways to communicate with us, eats much better, no reflux, she is gaining weight, shows interest in toys and has a smile and laugh that is indiscribable. When I see her smile, this teeth showing full face smile I am humbled. Humbled that this little girl is SO happy despite her limitations. She is fast becoming my hero. My sweet little girl has the determination of David (David and Goliath) the strength of Moses, and the power of Jesus running through her veins.
Our God is an AWESOME GOD HE REIGNS from heaven above with WISOM, POWER AND GRACE.
OUR GOD IS AN AWESOME GOD.
Thank you all for your continued prayers for our family. God IS moving.
Are you ready for this????? The results are in and ALL tests came in within NORMAL RANGE! For those of you who don't know the muscle biopsy was testing for mitochondrial diseases. The mitochondria are the "power houses" of our cells. ANYWAYS I want to share with you my first reaction.
Dr. Raff- "blah blah blah blah all tests came back normal blah blah blah"
Me- "THIS IS SO COOL!"
Dr. Raff- "it is?'
Me- "YES! This is just another testiment to God's power, it proves yet again that man nor moderne medicine does not know everything. God made us, he made us so intricate that only HE knows us completely!"
The Dr was very sweet and answered any questions I had. I really like him, anytime we see him he is very genuine and takes his time with us.
I know that my reaction seems odd. Shouldn't my first reaction be frustration? After all Jackie is 27 months old, we started testing at children's when she was 9 months old. That is 18 months of testing and waiting. Believe me when I say I have been frustrated, angry, scared but everytime I fall into those feelings God has been there to pull me out of it. I continue to learn through this whole process that GOD is HUGE.
My Grandma Clara and I where talking about this and she spoke of how she prays for healing for Jackie all the time. As I know many others do. She went on to say that maybe Jackie did have something devistating and she is being healed now. After all she is making improvements and is doing new things all the time:)
I learned yesterday that my Dad doesn't want Jackie to be diagnosed, he feels like it would label her and she wouldn't be just Jackie anymore. She would be seen as said illness and Jackie. I see his point and I can agree with it. As a matter of fact my husband felt the same way and maybe still does to some extent. My thought was that I wanted to do every test possible that would not harm her if it would help us help her.
To spin off of my Dads thoughts, Jackie is a miracle. At the age of 9 months her body behaved like a wet noodle. NO consistant muscle tone and now at just over two years of age she rolls over, holds her head up and is sitting really well with minimal support, she is finding ways to communicate with us, eats much better, no reflux, she is gaining weight, shows interest in toys and has a smile and laugh that is indiscribable. When I see her smile, this teeth showing full face smile I am humbled. Humbled that this little girl is SO happy despite her limitations. She is fast becoming my hero. My sweet little girl has the determination of David (David and Goliath) the strength of Moses, and the power of Jesus running through her veins.
Our God is an AWESOME GOD HE REIGNS from heaven above with WISOM, POWER AND GRACE.
OUR GOD IS AN AWESOME GOD.
Thank you all for your continued prayers for our family. God IS moving.
Tuesday, July 7, 2009
Could today be the day???
Just a quick post, yesterday I called the genetics clinic at Children's to inquire about Jackie's Muscle biopsy. We had the procedure done on April 20th 2009 and have been waiting patiently ( :) ) to hear the results. And YES we were warned that it was going to take several weeks. Anyway I got a voicemail back from one of the assistants saying ALL the results are in and she has left a voicemail for Dr.Raff to give us a call. She said she is not trained to interpert the results so he has to call us. The Dr is supposed to call us today. PLEASE pray that he will call today and that it won't require an appt to come see him. No offense but I can't schedule anymore time out right now.
Thank you all for your love and support
Danielle
Thank you all for your love and support
Danielle
Friday, July 3, 2009
Freedom Fri-D-YAY!
First day of my weekend today. The kids don't have daycare so we all get to hang out today. Took care of some business this morning and now I am trying to make a plan for the rest of the day.
Tomorrow will be filled with festivities. Should be a great weekend!
Hava a happy and safe weekend!
Tomorrow will be filled with festivities. Should be a great weekend!
Hava a happy and safe weekend!
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