Monday, June 3, 2013
Wednesday, March 13, 2013
Therapy
Therapy means well and we love them,,, but do these people realize we have to work to pay for all Ellie's needs!
Teach yourself sign language so you can teach Ellie, make laminated books of real life pictures she will recognize, build Ellie a special coat rack to hang her coat herself, take Ellie to library activities to promote signing and socialization, do her daily stretches multiple times a day and log them on a log sheet,,, OH yeah and make it to all the Dr appts, tests, and therapy appts for 3 different therapist each having sessions 2x a month! Not to mention Alex!
Speech therapy is going,,, not well, not bad just going! Not to throw John under the bus and he will probably not read this so Oh well, but he messes up sign language on a daily basis. Ellie's wall of therapy sheets and signs in her room and then on the fridge are apparently not enough. Not to mention the multiples signing books we now have! Posters and flashcards! Good thing Ellie loves books. Counting Ellie is up to about 20-30 signs she can do and another 20 she understands and obeys. We go NO where without our signing book.
Speech wants us to use signing more in daily speech while talking so Ellie can better understand the meaning of the signs and there context so we are going to be much more diligent about posting signs on here so everyone can keep up with Ellie. So far the best online resource for looking up signs I have found is http://www.signingsavvy.com/.
Therapy has requested more outings to places and events to involve Ellie so for the last few weeks we have been going to story time and the library 2x a week. Exhausting for mommy! But Ellie loves it. She now knows the way there and will scream louder as we get closer and closer! Today she had to hug the teachers goodbye! It is amazing how well she does responding to signs out in public, sometimes due to her developmental delays it is hard to remember how old she really is! She has really shown us over the last 3 weeks what a big girl she is becoming! And Independent!! And apparently stylish!
Teach yourself sign language so you can teach Ellie, make laminated books of real life pictures she will recognize, build Ellie a special coat rack to hang her coat herself, take Ellie to library activities to promote signing and socialization, do her daily stretches multiple times a day and log them on a log sheet,,, OH yeah and make it to all the Dr appts, tests, and therapy appts for 3 different therapist each having sessions 2x a month! Not to mention Alex!
Speech therapy is going,,, not well, not bad just going! Not to throw John under the bus and he will probably not read this so Oh well, but he messes up sign language on a daily basis. Ellie's wall of therapy sheets and signs in her room and then on the fridge are apparently not enough. Not to mention the multiples signing books we now have! Posters and flashcards! Good thing Ellie loves books. Counting Ellie is up to about 20-30 signs she can do and another 20 she understands and obeys. We go NO where without our signing book.
Speech wants us to use signing more in daily speech while talking so Ellie can better understand the meaning of the signs and there context so we are going to be much more diligent about posting signs on here so everyone can keep up with Ellie. So far the best online resource for looking up signs I have found is http://www.signingsavvy.com/.
Therapy has requested more outings to places and events to involve Ellie so for the last few weeks we have been going to story time and the library 2x a week. Exhausting for mommy! But Ellie loves it. She now knows the way there and will scream louder as we get closer and closer! Today she had to hug the teachers goodbye! It is amazing how well she does responding to signs out in public, sometimes due to her developmental delays it is hard to remember how old she really is! She has really shown us over the last 3 weeks what a big girl she is becoming! And Independent!! And apparently stylish!
Jan 16th Surgery Day!
At first I really thought I could totally do this blog thing, how easy does this seem! I have no time! I think about it a lot and then going to bed just seems so much better!
So back on the blog wagon!
Short condensed version of what has been happening with Ellie.
Ellie was diagnosed with a Tethered spinal Cord (http://www.childrenshospital.org/az/Site1705/mainpageS1705P0.html). January 16th we were off to Children's for surgery. Of course Ellie loved everyone as usual! This was dad's first real major appointment he went to. He had never seen Ellie sedated or had to watch her walk away with hospital staff only hoping and praying that she would come back just the way she left. John was more upset I think that she willingly left his arms into the arms of the nurses without even a tear. A tear from Ellie that is ;)! We called her the mayor while we were there. On her way to surgery she had to look in every door and see what everyone was doing, after surgery she had to walk to each hospital room by hers and look inside the room to see who was there and what they were doing!
Before surgery in her fave play room!
A few hours passed and of course all went well, we did receive pictures from during surgery but I will not post those! John has not even looked at them, not for a weak stomach! John's mom Bobbi came to keep use company and took us to lunch in the cafe during surgery! In the waiting room we talk to the Dr and he says how great it went, that his son in fact had the same diagnosis and treatment! Somewhat comforting. Then the bombshell! Bed rest for Ellie,,, I expected the answer to my question of "how long" to be a few hours,,,, He replies 2 DAYS!!! One would think this would be something he tell us in our pre operative appt! Unsedated we had to keep Ellie flat in bed for 2 DAYS! Oh man! Needless to say mom and dad were on bed rest for 2 days as well! Working in the intensive care myself I am not afraid to drug people! When they said they had Valium and Morphine for Ellie I welcomed the side effects of sleepiness! Bed rest was much more tolerable due to the wonderful BAG of cookies we received from cousins Maggie and Gracie!
Today is the day,, Ellie was so excited to sit up in bed to eat breakfast and eager to get out of bed until she realized how much it hurt. I knew it was going to hurt her but we all underestimated how much! After sometime walker in hand she was off! Therapy placed stickers along the handrail and Ellie was off collecting stickers! After she was up and going forget sitting back down!
3 days passed and we were on our way home. Corset intact to keep our incision from coming open we're off. It took some time but finally 8 weeks post op things are finally healing well. Ellie's incision is healed and she is walking without her walker. She can walk 20-30 feet unassisted with her braces on! No hands, walls, or walker... that's about the distance when she thinks she is tough stuff and gets going to fast and loses her balance! People often run to her when she biffs but Ellie is going to be a professional stunt girl when she grows up! The girl knows how to fall!
Physical wise Ellie can now stand up on her own using items around her like chairs or the wall. She occasionally can kneel down for a toy and stand back up without hanging on but that trick is tough! Ellie's legs have loosened up but she still requires braces for her feet/legs to be able to balance well enough to walk longer distances. We do let her have breaks and go brace free on certain days,,, on these days she is able to walk without braces, shorter distances, she is getting there. This fall we hope to put her in dance classes!
So back on the blog wagon!
Short condensed version of what has been happening with Ellie.
Ellie was diagnosed with a Tethered spinal Cord (http://www.childrenshospital.org/az/Site1705/mainpageS1705P0.html). January 16th we were off to Children's for surgery. Of course Ellie loved everyone as usual! This was dad's first real major appointment he went to. He had never seen Ellie sedated or had to watch her walk away with hospital staff only hoping and praying that she would come back just the way she left. John was more upset I think that she willingly left his arms into the arms of the nurses without even a tear. A tear from Ellie that is ;)! We called her the mayor while we were there. On her way to surgery she had to look in every door and see what everyone was doing, after surgery she had to walk to each hospital room by hers and look inside the room to see who was there and what they were doing!
Before surgery in her fave play room!
A few hours passed and of course all went well, we did receive pictures from during surgery but I will not post those! John has not even looked at them, not for a weak stomach! John's mom Bobbi came to keep use company and took us to lunch in the cafe during surgery! In the waiting room we talk to the Dr and he says how great it went, that his son in fact had the same diagnosis and treatment! Somewhat comforting. Then the bombshell! Bed rest for Ellie,,, I expected the answer to my question of "how long" to be a few hours,,,, He replies 2 DAYS!!! One would think this would be something he tell us in our pre operative appt! Unsedated we had to keep Ellie flat in bed for 2 DAYS! Oh man! Needless to say mom and dad were on bed rest for 2 days as well! Working in the intensive care myself I am not afraid to drug people! When they said they had Valium and Morphine for Ellie I welcomed the side effects of sleepiness! Bed rest was much more tolerable due to the wonderful BAG of cookies we received from cousins Maggie and Gracie!
Physical wise Ellie can now stand up on her own using items around her like chairs or the wall. She occasionally can kneel down for a toy and stand back up without hanging on but that trick is tough! Ellie's legs have loosened up but she still requires braces for her feet/legs to be able to balance well enough to walk longer distances. We do let her have breaks and go brace free on certain days,,, on these days she is able to walk without braces, shorter distances, she is getting there. This fall we hope to put her in dance classes!
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