Today Alexis had "after-school PT" at Northeast Rehab in Salem NH.
We've been going there since Alexis was about 8months old. Originally we started there in aquatic PT in the heated swimming pool. We all loved it.
When Alexis turned 3 and went to Perkins full time, we couldn't accomodate aquatic PT in her hectic schedule.
So we switched to Land PT. (PT on the land, obviously).
So we've been spending our Friday afternoons doing PT for 2 years, 1 month and 3 days. Basically 80+ appointments (in addition to her PT/OT/Speech etc at School).
TODAY, Alexis showed some remarkable fantastic and wonderful skills!
She walked without any assistance twice - about 6 steps each time. You can not even imagine the GIDDINESS that we (her PT and I) had on her huge milestone. Alexis was rewarded and congratulated. She was the super star, I think most of the in-patients heard us cheer for Alexis.
After demo'ing these talents and then getting rewarded - she refused to put her feet down anymore. STUBBORN! (but we know where she gets that from)
This is fantastic as we know, first steps are small steps, then they get bigger, and bigger and bigger and then we will have to baby-proof our house !!!
So if you see Alexis running around the hosptial, her school or in the neighborhood - you'll know THIS WAS THE DAY!!! Absolutely fantastic way to end a very hectic week for the family.
Catherine
Friday, March 11, 2011
Wednesday, March 9, 2011
Alexis' Story in the Boston Newspapers - Lobbying for Deafblind Services
Because of Alexis, our family has entered into the world of deaf-blindness and medical needs.
Someone said today, our son has a special family. So instead of saying I have a special needs child, I am going to start saying
"WE ARE A SPECIAL FAMILY".
Because of our special family status - I was asked to go to speak at Massachusetts State House. I made people cry, I'll readily admit that. Two total minutes of talking and not a dry eye in the place. I realed the audience in with my well practiced and appropriately placed voice cracks (just kidding, I was trying hard not to cry myself). Nothing says tear jerker like balling speaker.
I wrote the "speech" at the coffee shop across the street, which is pretty bad planning on my part. Basically I said something like this (I don't remember what I said word for word because I only wrote a couple of words down in my "speech")
"
I brought a photo of my 5 year old, Alexis. She wears cute little pink glasses and hearing aids, attends Perkins and is learning her numbers, letters and colors - everything that a normal preschooler would do. She brightens the lives of everyone she meets.
But her life isn't really that simple. Alexis fought to be here. Her identical twin sister died when I was pregnant. Alexis had to fight for her life. Because she fought for her life, we fight for her life, we fight for her safety, and we fight for her services.
Please do whatever you can to make sure services exists for Alexis as she needs the opportunities our world can offer her. She is fighting to be here with us.
"
And then I ran to my seat.
Here is an official newspaper version of that story
http://www.boston.com/news/local/massachusetts/articles/2011/03/09/deaf_blind_residents_ask_mass_to_keep_services/
Since I'm sure you all clicked on the link and then came back to my blog. I wanted to add a small editorial to the article - Jaimi Lard. So in the United States, at some point in our public education process, we all study Helen Keller. We may even read books about her, or just watch a movie. But the point is more Americans probably name Helen Keller than we know Presidents. If you've never had the opportunity to see a person communicate with tacticle sign - you aren't living. It should be on everyone's bucket list. Sign Language was developed for sighted hearing impaired people. It was modified for deaf-blind to be a means of communication in the "hands". When I first saw Jaimi at Perkins, I cried. I think Alexis was 2 or 2.5 (still very little). Seeing Jaimi told me "Alexis has a great future in front of her with the right services". And everytime I see Jaimi and others using tactile sign - I am in tears. It's a very specialized language developed to help people reach their full potential. It is absolutely amazing.
(here is more about Jaimi - http://www.perkins.org/news-events/news/expired/lardhero.html)
I am absolutely thrilled that Alexis' story is in the same article with Jaimi. This is the potential future for Alexis and I'm thrilled that I can help make the road for Alexis.
Someone said today, our son has a special family. So instead of saying I have a special needs child, I am going to start saying
"WE ARE A SPECIAL FAMILY".
Because of our special family status - I was asked to go to speak at Massachusetts State House. I made people cry, I'll readily admit that. Two total minutes of talking and not a dry eye in the place. I realed the audience in with my well practiced and appropriately placed voice cracks (just kidding, I was trying hard not to cry myself). Nothing says tear jerker like balling speaker.
I wrote the "speech" at the coffee shop across the street, which is pretty bad planning on my part. Basically I said something like this (I don't remember what I said word for word because I only wrote a couple of words down in my "speech")
"
I brought a photo of my 5 year old, Alexis. She wears cute little pink glasses and hearing aids, attends Perkins and is learning her numbers, letters and colors - everything that a normal preschooler would do. She brightens the lives of everyone she meets.
But her life isn't really that simple. Alexis fought to be here. Her identical twin sister died when I was pregnant. Alexis had to fight for her life. Because she fought for her life, we fight for her life, we fight for her safety, and we fight for her services.
Please do whatever you can to make sure services exists for Alexis as she needs the opportunities our world can offer her. She is fighting to be here with us.
"
And then I ran to my seat.
Here is an official newspaper version of that story
http://www.boston.com/news/local/massachusetts/articles/2011/03/09/deaf_blind_residents_ask_mass_to_keep_services/
Since I'm sure you all clicked on the link and then came back to my blog. I wanted to add a small editorial to the article - Jaimi Lard. So in the United States, at some point in our public education process, we all study Helen Keller. We may even read books about her, or just watch a movie. But the point is more Americans probably name Helen Keller than we know Presidents. If you've never had the opportunity to see a person communicate with tacticle sign - you aren't living. It should be on everyone's bucket list. Sign Language was developed for sighted hearing impaired people. It was modified for deaf-blind to be a means of communication in the "hands". When I first saw Jaimi at Perkins, I cried. I think Alexis was 2 or 2.5 (still very little). Seeing Jaimi told me "Alexis has a great future in front of her with the right services". And everytime I see Jaimi and others using tactile sign - I am in tears. It's a very specialized language developed to help people reach their full potential. It is absolutely amazing.
(here is more about Jaimi - http://www.perkins.org/news-events/news/expired/lardhero.html)
I am absolutely thrilled that Alexis' story is in the same article with Jaimi. This is the potential future for Alexis and I'm thrilled that I can help make the road for Alexis.
Wednesday, February 23, 2011
Jessica Ski Bunny
Not everyone can pull off this outfit. But our little ski bunny can....
Jessica getting psyched for skiing.
Jessica skiing. (Me running behind her trying not to allow her to crash into anyone or anything!)
It's more of a challenge than you would think.... :) I'm not on skis though.
After 6 runs on the bunny hill, she wanted to go on the real mountain- that's my girl. Next time we go up!
Saturday, February 19, 2011
Belated Christmas Picture
Alexis came to Philips for Family Fun Day (Open House).
She was photographed with Santa (don't tell Alexis but he works at Philips too!)
She looks like a GIANT to us in this picture.
Absolutely ADORABLE!!! She's a big 5 year old now!
Catherine
She was photographed with Santa (don't tell Alexis but he works at Philips too!)
She looks like a GIANT to us in this picture.
Absolutely ADORABLE!!! She's a big 5 year old now!
Catherine
Tuesday, February 8, 2011
Alexis Birthday!!!
Happy 5th Birthday little GIRL Alexis!!!
5 years ago today at 8:53am, we welcomed you into our lives.... and spent 72 days in the NICU to get you in order enough to get home.
4 years ago, we spent your birthday in the hospital for 20 days trying to figure out your breathing / airway issues.
3 years ago, we were keeping you healthy in preparation for your tonsil removal surgery.
2 years ago, we kept it low key to make sure you didn't get sick in the winter.
1 year ago, we celebrated your beautiful life with friends at the Children's Museum in Boston.
This year, we had a bash at the new house. And you giggled and giggled and giggled! You were enjoying life and had a blast! We love you little girl Alexis. You make us proud to be your parents. You light up a room, you work the room and you melt hearts along the way. You are silly, stubborn, smart and loving. Keep up the fight for life, we are all here cheering you on! 7 surgeries in 5 years and CPAP nightly for 4 years - we'll move mountains for you!
Much love, Mom, Dad & Jessica!
5 years ago today at 8:53am, we welcomed you into our lives.... and spent 72 days in the NICU to get you in order enough to get home.
4 years ago, we spent your birthday in the hospital for 20 days trying to figure out your breathing / airway issues.
3 years ago, we were keeping you healthy in preparation for your tonsil removal surgery.
2 years ago, we kept it low key to make sure you didn't get sick in the winter.
1 year ago, we celebrated your beautiful life with friends at the Children's Museum in Boston.
This year, we had a bash at the new house. And you giggled and giggled and giggled! You were enjoying life and had a blast! We love you little girl Alexis. You make us proud to be your parents. You light up a room, you work the room and you melt hearts along the way. You are silly, stubborn, smart and loving. Keep up the fight for life, we are all here cheering you on! 7 surgeries in 5 years and CPAP nightly for 4 years - we'll move mountains for you!
Much love, Mom, Dad & Jessica!
Sunday, February 6, 2011
Schnaderbeck Sundays
Don't let the outfits fool you, it's Alexis taking on the Speedy Sled Hill now.
A little growl and raspberry means mixed results. But she did the after run camera interview. :-)
The raspberry at the end of the video indicates that her run was a success. So she goes again.
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