Friday, November 30, 2012
Our Journey over the last 9 months..
This is the latest video that Aunt Sami has put together... This is amazing and I had to share! :)
CMN Radiothon: Emma's Story
Here is a preview of Emma's Story from the radiothon if you missed it... Enjoy!
Children's Miracle Network Calendar 2013..
Children's Miracle Network-Springfield has a calendar every year and Emma was selected to be one of the 12 children to represent St John's Children's Hospital...
You can purchase these calendars for $10.00 at St John's Children's Hospital Gift Shop, St John's Pediatric Rehabilitation Center and St John's Main Hospital Gift Shop.
Emma is representing January and our sweet friend Faith represents the month of September :)
All of the money from these calendars stay at St John's Children's Hospital to help children like Emma and Faith during their stay. :)
You can purchase these calendars for $10.00 at St John's Children's Hospital Gift Shop, St John's Pediatric Rehabilitation Center and St John's Main Hospital Gift Shop.
Emma is representing January and our sweet friend Faith represents the month of September :)
All of the money from these calendars stay at St John's Children's Hospital to help children like Emma and Faith during their stay. :)
A Healthy Baby..is a Happy Baby!
Emma has been a completely different baby girl since we spent that 7 week stretch at home and we were actually able to work with her and get her excited about things. Laying in a hospital bed day after day is miserable.. this we know.. but for a baby :( She cant even play on her phone or do a crossword if she wanted too..
Since we spent all that time at home Emma has been doing a lot of therapy at home and getting her trunk under control (still emerging and constantly making positive progress).. I would definately call her a 'supported sitter' and she is able to be in an upright position more to work on her hips as well as trunk and head control.
The fact that she continues to bounce back gives me hope because there has been so many times when she wasnt able to bounce back for weeks. Also with all the new information on what we have found out with her hearing and vision makes us have a whole different look at things.
From what we were being told/shown by the test results... Emma was not seeing very well and she definately was not hearing anything without aids.. Things are looking a little different now. :)
We know her vision is pretty good from all she is showing us.. :)
Since we spent all that time at home Emma has been doing a lot of therapy at home and getting her trunk under control (still emerging and constantly making positive progress).. I would definately call her a 'supported sitter' and she is able to be in an upright position more to work on her hips as well as trunk and head control.
The fact that she continues to bounce back gives me hope because there has been so many times when she wasnt able to bounce back for weeks. Also with all the new information on what we have found out with her hearing and vision makes us have a whole different look at things.
From what we were being told/shown by the test results... Emma was not seeing very well and she definately was not hearing anything without aids.. Things are looking a little different now. :)
We know her vision is pretty good from all she is showing us.. :)
A Sight to See...
Another thing I have been so excited to share is that we have yet another addition to TEAM EMMA. This time it is a vision therapist who is teaching us so many ways to help Emma progress with her vision..
Not only is Emma following every single thing that goes on in the room... She refuses to keep her glasses on which worried me but both her opthamologist and her vision therapist are not at all worried because they think she is seeing at 20/70. Which is legally blind.. but we did learn people can still drive with this bad of vision.
HONESTLY.. Unless I tried to focus on something far away I couldn't tell a difference. She is near sighted. .. Her vision is 10,000x's better than I ever imaged it to be! Which make me one happy Mommy!
She is following us, recognizing people, and playing with some objects. (Saline flushes are her favorite..poor thing has spent to much time in the hospital..)
Miss Joni (our vision therapist) is from Illinois School for the Visually Impaired and has done amazing things for Emma and I'm so excited to have her as a part of TEAM EMMA :)
HONESTLY.. Unless I tried to focus on something far away I couldn't tell a difference. She is near sighted. .. Her vision is 10,000x's better than I ever imaged it to be! Which make me one happy Mommy!
She is following us, recognizing people, and playing with some objects. (Saline flushes are her favorite..poor thing has spent to much time in the hospital..)
Miss Joni (our vision therapist) is from Illinois School for the Visually Impaired and has done amazing things for Emma and I'm so excited to have her as a part of TEAM EMMA :)
New Emma Record..
The most time Emma had spent at home prior to this record breaking stay is the initial 6 weeks home..(42 days)
From September 18th to November 20th the only time she spent in the hospital was one 23 hour observation.. which she didn't need to be in hospital we took care of everything but we didn't want to take that chance so we agreed. We were home on IV medicine as a precaution but we were able to stop them at 48 hours post admission because her cultures were showing no growth.
Emma's new record is now set at 63 days home! :) We are so very proud because there was a period of about 5 months where we hadn't spent 60 days home in all 5 of those months combined.. and some of them we were not even home for 60 hours! :/
Baby steps are better than taking steps back. We are so very proud of all Emma is accomplishing. Her IVIg infusions that are strengthening her immune system for her have helped out BIG TIME!
(She is actually getting an infusion as I type.. seems as those this is the only time I have to actually update the blog anymore.. )
Thanks again for all the support :)
From September 18th to November 20th the only time she spent in the hospital was one 23 hour observation.. which she didn't need to be in hospital we took care of everything but we didn't want to take that chance so we agreed. We were home on IV medicine as a precaution but we were able to stop them at 48 hours post admission because her cultures were showing no growth.
Emma's new record is now set at 63 days home! :) We are so very proud because there was a period of about 5 months where we hadn't spent 60 days home in all 5 of those months combined.. and some of them we were not even home for 60 hours! :/
Baby steps are better than taking steps back. We are so very proud of all Emma is accomplishing. Her IVIg infusions that are strengthening her immune system for her have helped out BIG TIME!
(She is actually getting an infusion as I type.. seems as those this is the only time I have to actually update the blog anymore.. )
Thanks again for all the support :)
Tuesday, November 6, 2012
Children's Miracle Network Radiothon...11/15 & 11/16
Our story will be shared with listeners all over the state/nation next Thursday and Friday. WDBR out of Springfield will be airing the event hosted by Children's Miracle Network out of Springfield.
This is an opportunity of a life time. I know you may not think a story as scary as ours could happen to you.. but let me tell you... it can happen to anyone, at any minute... and there's nothing you can do but hope you make it to St John's Children's Hospital in time to be placed in the hands of the amazing medical staff at this hospital.
We cant financially make any donations but we know that every dollar counts.. So no matter how small the donation.. Please try and donate to the Children's Miracle Network... we have many things that needing funding help to take St John's to a whole new level.
This funding goes to help miracles like Emma, Faith, and many more little gals who have inspired us all in so many ways.
If you have time.... next Thursday 11/15/2012 and Friday 11/16/2012 all day anytime... come out and see what Children's Miracle Network does for St John's Children's Hospital. Come see past and present St John's Miracles... because unfortunately you never know... in reality you child could be in the hands of this amazing staff in the future. I pray that is not the case, however, that is something that only God knows.
Hopefully this link will work... this is a you tube video created by an amazing member of the Children's Miracle Network.. its a brief overview of our story that will be shared on the Radiothon....
http://www.youtube.com/watch?v=B5xV7x6qM80&feature=player_embedded
^ For some reason you do have to type this link out in the search bar.. but if typed correctly it does take you directly to you tube and begins to automatically play the video. Enjoy!
This is an opportunity of a life time. I know you may not think a story as scary as ours could happen to you.. but let me tell you... it can happen to anyone, at any minute... and there's nothing you can do but hope you make it to St John's Children's Hospital in time to be placed in the hands of the amazing medical staff at this hospital.
We cant financially make any donations but we know that every dollar counts.. So no matter how small the donation.. Please try and donate to the Children's Miracle Network... we have many things that needing funding help to take St John's to a whole new level.
This funding goes to help miracles like Emma, Faith, and many more little gals who have inspired us all in so many ways.
If you have time.... next Thursday 11/15/2012 and Friday 11/16/2012 all day anytime... come out and see what Children's Miracle Network does for St John's Children's Hospital. Come see past and present St John's Miracles... because unfortunately you never know... in reality you child could be in the hands of this amazing staff in the future. I pray that is not the case, however, that is something that only God knows.
Hopefully this link will work... this is a you tube video created by an amazing member of the Children's Miracle Network.. its a brief overview of our story that will be shared on the Radiothon....
http://www.youtube.com/watch?v=B5xV7x6qM80&feature=player_embedded
^ For some reason you do have to type this link out in the search bar.. but if typed correctly it does take you directly to you tube and begins to automatically play the video. Enjoy!
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