Utah here we come!!! Never in my life did I think I would be in Utah! I have no particular reason for this but in reality Utah was never on my to do list. I am going to the Rett Syndrome conference for the first time. I am excited to learn more about what is going on with Emma and ways that u can help her.
For now however, I am stuck in the airport with a delayed flight. Boo!
Wednesday, June 26, 2013
Friday, June 21, 2013
Watch out Minnesota, here we come!
SUPER EXCITED!!!!
Our insurance plan approved our request/referral to take Emmy to the Gillette Children's Specialty Hospital in Minnesota which is supposedly a regional leader in the care and treatment of Rett Syndrome. I have to say that I am still pretty shocked that Chicago, the 3rd largest city in the United States doesn't have something like that!
There was some question as to whether or not our insurance would approve it because we have an HMO and they are not only out of network, but also out of state. It was frustrating to be told that "no one questions the fact that it would be the best care but ....." They were worried that he insurance would say no because they have neurologist at the hospital she goes to know, even though they haven't EVER treated a girl with Rett. GIANT kudos to Emma pediatrician who wrote 3 letters of medical necessity to the insurance company to make this happen!!
Our insurance plan approved our request/referral to take Emmy to the Gillette Children's Specialty Hospital in Minnesota which is supposedly a regional leader in the care and treatment of Rett Syndrome. I have to say that I am still pretty shocked that Chicago, the 3rd largest city in the United States doesn't have something like that!
There was some question as to whether or not our insurance would approve it because we have an HMO and they are not only out of network, but also out of state. It was frustrating to be told that "no one questions the fact that it would be the best care but ....." They were worried that he insurance would say no because they have neurologist at the hospital she goes to know, even though they haven't EVER treated a girl with Rett. GIANT kudos to Emma pediatrician who wrote 3 letters of medical necessity to the insurance company to make this happen!!
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| Emmy playing in her sandbox. |
Wednesday, June 19, 2013
Necessity, the mother of invention ....
It seems that there are many things that my daughter needs that are either uber expensive or they do not exist at all.
For example her platform swing. The they cost about $300 or more in the online stores that I have found which is crazy. Yes, I could try and get one through Early Intervention but if I did that I would wait for ever. Her annual was at the beginning of March and almost 4 months later we still do not have any of the stuff they wanted to get for her nor is there any indication if when these items will magically appear.
My dad and I build Emma her own platform swing in about 2 hours one evening for about $60 dollars using the directions that we found on line here:
http://lovingamiracle.blogspot.com/2012/03/how-do-you-make-platform-swing.html
Her therapist and I think it came out great! We tweaked it a little bit and added carpet but otherwise her directions are great!
Now she can safely navigate her way through the house, yay Emma!
We used rope around parts of the yard where it was not practical to install fencing or railings.
So I decided to use foam toy building blocks. The one that have a hole in them I just use a kitchen knife and cut the corners and what not off until I get a fairly round shape to it and then I have a bracelet that will protect her arm. People ask me all the time where I got them, its crazy!
I also took apart the chewbeads that they make for mothers of teething babies and re-strung them on the dog-tag style chain and sized them to her wrist. I had them on elastic at first but it rolled up her arm and wasn't useful, I was also afraid it would cut off her circulation.
For example her platform swing. The they cost about $300 or more in the online stores that I have found which is crazy. Yes, I could try and get one through Early Intervention but if I did that I would wait for ever. Her annual was at the beginning of March and almost 4 months later we still do not have any of the stuff they wanted to get for her nor is there any indication if when these items will magically appear.
My dad and I build Emma her own platform swing in about 2 hours one evening for about $60 dollars using the directions that we found on line here:
http://lovingamiracle.blogspot.com/2012/03/how-do-you-make-platform-swing.html
Her therapist and I think it came out great! We tweaked it a little bit and added carpet but otherwise her directions are great!
- Emma also needs a little assistance walking for balance, so I build the Indoor Emma track:
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| I installed wooden dowels across walkways |
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| and doorways |
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| I attached a play yard to the wall so she will not slip and has something to hold on to. |
Now she can safely navigate her way through the house, yay Emma!
- I also decided that an Outdoor Emma track was needed so that she could walk around and join in the action outside. It was super easy and cheap. The pvc pipe was only $2 for 10 feet!
We used rope around parts of the yard where it was not practical to install fencing or railings.
Now she can navigate the whole outside area and inside of the house!
- One of Emma;s stereotypical hand movements is that she brings her right hand up and bites her wrist and forearm. I was pretty sure that I would hop on Amazon and buy something to protect her skin but there was absolutely nothing to buy!
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| Emmy and big sister |
So I decided to use foam toy building blocks. The one that have a hole in them I just use a kitchen knife and cut the corners and what not off until I get a fairly round shape to it and then I have a bracelet that will protect her arm. People ask me all the time where I got them, its crazy!
I also took apart the chewbeads that they make for mothers of teething babies and re-strung them on the dog-tag style chain and sized them to her wrist. I had them on elastic at first but it rolled up her arm and wasn't useful, I was also afraid it would cut off her circulation.
Those are my creative projects, thus far ......
Children's Museum Trip
We took Emma & her bother to the Children's Museum on Navy Pier. They both seemed to have a good time but I have to say that it is not the best place to take a child that cannot walk independently.
There was really only one room that she could navigate herself and it was littered with stuffed animals all over the floor.
SO, she saw most of the place from her stroller, I don't really think that she cared to much. She was kinda tired anyway as it was pretty close to lunch and nap time. Also, it was not all that great for the price, honestly almost $100 for us to walk around was is tantamount to a giant playroom.
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| Manny walking down incline |
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| climbing stairs |
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| crawling up fire truck after climbing stairs |
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| crawling through shoe |
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| has to walk up narrow stairs to get to play area |
There was really only one room that she could navigate herself and it was littered with stuffed animals all over the floor.
It is weird that nowadays when every we go some where my brain automatically assesses how Emma friendly the environment is for her.
Saturday, June 15, 2013
Early Morning workout :)
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| Swinging for vestibular input |
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| Practicing walking forward |
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| Practicing walking forward |
Friday, June 14, 2013
I forgot you could clap...
I was looking through the videos I have of Emma and Manny for the last two years for a project that I am working on..... I almost for got that you use to clap your hands....
I wonder if I will ever be able to look at these videos without it feeling like my heart is being ripped out of my chest. Seeing her so happy and being able to play with her brother, seeking him out and laughing. I miss seeing her like that.
I wonder if I will ever be able to look at these videos without it feeling like my heart is being ripped out of my chest. Seeing her so happy and being able to play with her brother, seeking him out and laughing. I miss seeing her like that.
Thursday, June 13, 2013
Tobii
So. The Tobii rep dropped off an eye gaze device for Emma to use and frankly she appears to be pretty unimpressed by the whole thing. I swear she can zero in on a cookie from across the room but she would not look at that device for anything! We were almost doing dances behind the dam thing! We were waving out arms, pointing, holding pictures in above the pictures, making all likes of gestures to get he attention. We musta looked like total but jobs.
Little man thinks its a riot, he's super good at it too!! Perhaps he can teach her! Oh well, tomorrow is a new day.
Wednesday, June 12, 2013
Communication
The PRC rep came to the house tonight. I have to pick the device that is going to enable Emma to have a voice in the world. No pressure! Do I chose Tobii or PRC? They both seem good .... but which one is better? Which one is better for her? How do you know?
Martha, Martha, Martha!
Took my little angel to the Martha Washington clinic today at Lutheran Children's Hospital. We were there for about 3 hours. Emma made friends with a little girl while we were waiting which was cute to see until I noticed while checking in with the nurse that the little girl started feeding Emma cookies of unknown origin. Aside from her probable dairy sensitivity it was just a bit scary and gross as I turned my head to check on Emma in time to see the girl pick a piece of cookie up off the floor and pop it into Emma's mouth! I about died, NASTY!!
My minor spaz at the dirty cookie incident was not enough to deter their budding friendship, they still hung out afterward. Emma is like a little people magnet, people love her everywhere we go and talk about how warm and sweet she is and how drawn to her they feel. Needless to say she visited and enchanted everyone in the waiting room.
When we got called in she had and x-ray of her hips and her spine, she saw a pediatric orthopedic surgeon, a Rehab doctor, an OT, a PT, and a SLT. Everyone was impressed with her walking and her general overall cuteness. They said that she looked great which is a relief, her alignment is good, no curvy spine. Emma got pretty annoyed while we were waiting and made a break for it a few times, little escape artist!
My minor spaz at the dirty cookie incident was not enough to deter their budding friendship, they still hung out afterward. Emma is like a little people magnet, people love her everywhere we go and talk about how warm and sweet she is and how drawn to her they feel. Needless to say she visited and enchanted everyone in the waiting room.
When we got called in she had and x-ray of her hips and her spine, she saw a pediatric orthopedic surgeon, a Rehab doctor, an OT, a PT, and a SLT. Everyone was impressed with her walking and her general overall cuteness. They said that she looked great which is a relief, her alignment is good, no curvy spine. Emma got pretty annoyed while we were waiting and made a break for it a few times, little escape artist!
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| Emma escaping down the hall |
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