Among many other quests I vowed to undertake this year, getting back to writing is one of them. Not so much about Ellie but the family as her journey is also ours, And to include more pictures and videos. So here is my nonChristmas letter Christmas letter update!
Ellie:
Ellie is now 3 1/2 yrs old, 1 1/2yrs post spine surgery. She is doing so fantastic, biased opinion of course! Still with braces to help her walk but without any assistive devices. Fearless and determined she has taken into running, well the best her little legs can run! I cringe and sometimes half close one eye as if that will help when she majorly buffs it! I now understand why during high school basketball my mom sat with her eyes covered a lot! 5'6'' is not a tall post by the way I had to fight those bigger girls!
Ellie started private speech, physical, and occupation therapy weekly in Omaha. She has been going for about 6 months now and we can definitely tell a difference. I can not say enough about the help we have received along the way just to advocate and send us in the right direction to get Ellie the BEST care and help possible. We are currently waiting for a Talking tool where Ellie can use a medical tablet for speak for her. I am so glad she is smart because she will have to teach me how to use it. She buzzes right through like a wiz! We did lose our favorite speech teacher so far Melissa, wishing her the best in her new adventure but will greatly miss her.
Ellie lost a her hearing again a couple months ago and had to have a different type of tube placed in her ears. After 2 yrs, 12-15 hearing tests, 2 ear surgeries, and 3 ENT doctors this Dr finally explained the connection to the inner ear and her cerebral palsy,,, who would have thought! She is back to hearing normally and breaking her glasses on a weekly basis!
Besides all of Ellie's medical needs she is loving preschool and all her school friends! And will go on her first field trip in a couple weeks. She just wants to ride the bus! Ellie has joined yoga! She thinks she is hot stuff but it double duties for therapy and for fun so it works!
ALEX:
Alex has been diagnosed in the last yr with a rare eye condition, which apparently he was born with. His R eye does not process what it sees and overtime the nerves stop growing and will die off leaving him blind in that eye! So he has glasses with a script for that eye to make the objects clear and then he is supposed to patch the good eye in order to force the bad eye to work. The hope will be to regain the nerves as he grows and return to some normal function. Have you ever looked for cool eye patches?! Well they do not exist and the ones that are COOL are not as effective,,, creativity at its best rendered some AWESOME patches, you really can use duct tape for anything! :)
Alex is in kindergarten and loves it. I try to volunteer in the class as much as I can between Ellie and working. Soccer season is also upon us. Coach is strict, I love it, not sure Alex does!
Many days if I am not already crazy I think I must be toting these 2 around everyday to all their stuff! Oh yeah and we still have John!
John still works for Yahoo and was recently promoted to a Senior Ad Operations Specialist. He tries to follow the kids and I crazy schedule and keep up but someone has to work outside the home to keep Ellie accustomed to her newest hobby,,,, SHOPPING! I still work for my company in Las Vegas and occasionally take call at the hospital.
And who can forget Monk-A-Daisy, the golden doodle dog, and Garfield the cat!
Tuesday, April 15, 2014
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!
Friday, October 12, 2012
Mommy blinders
Ellie had her 1st CDC visit, which is the developmental clinic at Childrens we go to. 5hrs and 11 different people we saw! What a long day. I expected for them to say the brain MRI maybe or maybe not showed some damage but that everything was really status quo and continue as we were and return for our followup to check progress.
Reality of what I heard was Ellie's spinal cord could possibly be tethered (tangled) and be causing her lower extremity issues! They scheduled us for yet another MRI, #3 total, this next week to check the spine and cord, if it does show it is tangled then we will proceed with surgery to free it. The neurologist tells us we should hope that this is the cause because he can fix it. If it is not there is nothing he can do for her but just help us through the process of things to maintain the best quality of life for her that we can!
Sometimes people say I don't know how you do it all the appts, therapy ect.... well someone has too! But I was blind cited by this appt! Excuse me Dr that I have trouble being excited my baby might need spinal surgery! Mommy blinders, like horse blinders, keep us focused forward and where we are going in the now and here and deter us from the "what ifs" surrounding us, but it also hides the bus that is about to run you over!
Reality of what I heard was Ellie's spinal cord could possibly be tethered (tangled) and be causing her lower extremity issues! They scheduled us for yet another MRI, #3 total, this next week to check the spine and cord, if it does show it is tangled then we will proceed with surgery to free it. The neurologist tells us we should hope that this is the cause because he can fix it. If it is not there is nothing he can do for her but just help us through the process of things to maintain the best quality of life for her that we can!
Sometimes people say I don't know how you do it all the appts, therapy ect.... well someone has too! But I was blind cited by this appt! Excuse me Dr that I have trouble being excited my baby might need spinal surgery! Mommy blinders, like horse blinders, keep us focused forward and where we are going in the now and here and deter us from the "what ifs" surrounding us, but it also hides the bus that is about to run you over!
Wednesday, September 19, 2012
"Mommy"
Hope is finally insight. We have gotten a second opinion that says lets try ear tubes! After failing so many hearing tests finally someone who is going to try something to help Ellie progress! May work and may not. Can't hurt to try and then restest,,, if she still fails so be it and we can go from there!
With that, someone said "how great would it be for her to hear and learn to talk and for you to hear her say Mommy"..... I am so good at wearing my blinders to get through the day that I had never stopped to think, Ellie has never called me "Mommy"!
We shelter ourselves from these facts and do not let ourselves even realize what is or is not happening to protect us from the fear of the unknown and what the future holds,,, like I may never hear Ellie call me "Mommy".
With that, someone said "how great would it be for her to hear and learn to talk and for you to hear her say Mommy"..... I am so good at wearing my blinders to get through the day that I had never stopped to think, Ellie has never called me "Mommy"!
We shelter ourselves from these facts and do not let ourselves even realize what is or is not happening to protect us from the fear of the unknown and what the future holds,,, like I may never hear Ellie call me "Mommy".
Monday, August 13, 2012
Aug '12 update
Therapy is still progressing. Ellie had a goal to initiate 10 activities herself. Bring us games to play without us telling her to, initiating she is hungry though signing ect, she has almost matered this goal! We have also almost met our first speech therapy goal of her signing back 10 signs! To us it seems like it is taking forever but therapy is so happy with her progress! We go to the ortho doctor later this week and are hoping for our braces within the next couple of weeks. With those she might have a walker as well, so we hope to get some professional decor advice from Julie for our new gear!
I had a phone call this last week about Ellie's hearing. She does have confirmed mild hearing loss in the L ear that we were told she might need a hearing aid for. We are now told with the R ear being normal that the mild loss is not enough that she would greatly benefit from a hearing aid so we wait and retest in Sept!
Aug 29th Ellie goes for an MRI of her brain to look for the brain damage to know what we are up against! Great to know but scary as they have to put her under general anesthesia for this,,, not a fan of this! Please remember us on this day and pray for knowledgable attentive staff to keep her safe during her anesthesia!
And I have to include Alex as well. He starts preschool 5 days a week Sept 4th, he is super excited and loves his school! He is so helpful with Ellie and a great big brother!
I had a phone call this last week about Ellie's hearing. She does have confirmed mild hearing loss in the L ear that we were told she might need a hearing aid for. We are now told with the R ear being normal that the mild loss is not enough that she would greatly benefit from a hearing aid so we wait and retest in Sept!
Aug 29th Ellie goes for an MRI of her brain to look for the brain damage to know what we are up against! Great to know but scary as they have to put her under general anesthesia for this,,, not a fan of this! Please remember us on this day and pray for knowledgable attentive staff to keep her safe during her anesthesia!
And I have to include Alex as well. He starts preschool 5 days a week Sept 4th, he is super excited and loves his school! He is so helpful with Ellie and a great big brother!
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