Wednesday, January 18, 2017
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This blog is dedicated to my daughter Kayla, who was diagnosed at birth with congenital myotonic dystrophy (cDM1). She spent 105 days in the neonatal ICU, 9 months on a ventilator with a tracheostomy and using a feeding tube. Her doctors did not expect her to live to see her first birthday but she lived 13 years and 8 months filled with amazing adventures. She loved defying the odds with love and care from her family, friends, therapists, teachers, and medical team. This is her story...
Photos of Kayla
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Myotonic Dystrophy Information and Support
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Kayla's Milestones
July 28, 2018
13 Years Old
100 lbs. 5 ft. 6 in.
Kayla is starting 8th grade soon and continues to be on the honor roll (with a full time 1:1 aide). Kayla loves science and humanities. Kayla is remaining really strong but wasn't able to keep her weight up so she had to have a feeding tube placed again a few months ago. She had it out for 11 years though! She's put on a good amount of weight and weighed in at 100 lbs for her 13th birthday. She looks so much healthier. Kayla is scheduled to start a new clinical trial for a new brain drug at the end of the year. Keeping my fingers crossed. July 28, 2017
12 Years Old
90 lbs. 5 ft. 4 in.
Kayla had a great 6th grade year and was on the honor roll all 4 quarters (with a full time 1:1 aide who helps to keep her on track and organized). Kayla is remaining really strong and just finished her 4th year in a research study at the University of Utah and might be in an upcoming clinical trial. Kayla still loves music and books and is reading pretty well considering all of her challenges. She's just amazing!
July 28, 2016
11 Years Old
78 lbs. 5 ft. 2 in.
Kayla is starting Middle School in 6th Grade soon. She went on a trip to Hawaii this summer thanks to Make-A-Wish! Kayla has a new step-dad, Paul who she loves so much. Kayla is growing up so quickly and is definitely turning into a tween.
July 28, 2015
10 Years Old
75 lbs. 5 ft.
Kayla is starting 5th Grade soon. It has been a tremendous year in terms of her educational progress. She really struggles with math but is consistently improving in Language Arts. Kayla is really excited to have a new soon to be Step-dad in her life and is preparing to be my flower girl for our wedding in September.
July 28, 2014
9 Years Old
70 lbs. 4 ft. 10 in.
Kayla is starting 4th Grade soon. It has been a tremendous year in terms of her GI problems. She is finally potty trained. (She's going to read this some day and be so mad at me for saying that). She still has lots of struggles but Kayla's a happy little girl who loves to read and especially loves music and dancing.
July 28, 2013
8 Years Old
67 lbs. 4 ft. 8 in.
Kayla is starting 3rd Grade soon. She still struggles with some GI issues, fatique, respiratory challenges and muscle weakness but she is doing pretty well overall. She loves to read and loves her friends at school.
July 28, 2012
7 Years Old
65 lbs. 4 ft. 6 in.
Kayla is starting 2nd Grade soon. She has made incredible progress over the years, I'm so proud of her. She still struggles with GI issues but is overall a happy, sweet little girl and has made several great new friends over the past year.
July 28, 2011
6 Years Old
58 lbs. 4 ft. 3 in.
Kayla is starting First Grade soon. She is talking in full sentences now. She is using 8-10 word sentences. She is reading really well although slower than average but who cares, she's reading! What a little miracle!
11 Years Old
78 lbs. 5 ft. 2 in.
Kayla is starting Middle School in 6th Grade soon. She went on a trip to Hawaii this summer thanks to Make-A-Wish! Kayla has a new step-dad, Paul who she loves so much. Kayla is growing up so quickly and is definitely turning into a tween.
July 28, 2015
10 Years Old
75 lbs. 5 ft.
Kayla is starting 5th Grade soon. It has been a tremendous year in terms of her educational progress. She really struggles with math but is consistently improving in Language Arts. Kayla is really excited to have a new soon to be Step-dad in her life and is preparing to be my flower girl for our wedding in September.
July 28, 2014
9 Years Old
70 lbs. 4 ft. 10 in.
Kayla is starting 4th Grade soon. It has been a tremendous year in terms of her GI problems. She is finally potty trained. (She's going to read this some day and be so mad at me for saying that). She still has lots of struggles but Kayla's a happy little girl who loves to read and especially loves music and dancing.
July 28, 2013
8 Years Old
67 lbs. 4 ft. 8 in.
Kayla is starting 3rd Grade soon. She still struggles with some GI issues, fatique, respiratory challenges and muscle weakness but she is doing pretty well overall. She loves to read and loves her friends at school.
July 28, 2012
7 Years Old
65 lbs. 4 ft. 6 in.
Kayla is starting 2nd Grade soon. She has made incredible progress over the years, I'm so proud of her. She still struggles with GI issues but is overall a happy, sweet little girl and has made several great new friends over the past year.
July 28, 2011
6 Years Old
58 lbs. 4 ft. 3 in.
Kayla is starting First Grade soon. She is talking in full sentences now. She is using 8-10 word sentences. She is reading really well although slower than average but who cares, she's reading! What a little miracle!
July 28, 2010
5 Years Old
50 lbs. 4 ft.
Kayla is starting Kindergarten soon. She is talking so much now, it just amazes me. She is using 4-5 word sentences. Her language took off as soon as we put her into an after school day care program where she is fully integrated.
July 28, 2009
4 Years Old
48 lbs. 3 ft. 9 in.
Kayla is starting her second year of pre-school soon. She is signing over 500 signs now and her comprehension is really good. She is still struggling with expressive language but is able to say two to three words together although her speech is hard to understand so we are looking into a communication computer so that she can communicate with her peers more easily.
July 28, 2008
3 Years Old
40 lbs. 3 ft. 4 in.
Kayla is walking really well now and hasn't used her walker in over 8 months. She is signing 250 signs now which is great since her speech is delayed.
July 26, 2007
2 Years Old
35 lbs. 38 in.
Kayla took her first steps independently two days before her second birthday. What a miracle! She's still using a walker but is getting stronger everyday and we hope she will be walking on her own very soon.
March 28, 2007
20 Months
30 lbs. 36 in.
Kayla is now able to walk with the aide of a walker although she is still a bit unsteady and is dinging up all of our walls in the house. She is able to communicate with us and has a signing vocabulary of over 25 baby signs. Kayla is also starting to communicate verbally more and can say up to 10 words now, including her new favorite word, "bubbles".
November 28, 2006
16 months
27 lbs. 9 oz. 34 1/2 in.
Kayla started pulling up to standing last week and started crawling today! Kayla can do 10 signs now and can say 3 words, Dada, Mama & Up.
October 28, 2006
15 Months
26 lbs. 8.5 oz. 33 3/4 in.
Kayla started walking along our couch this week! She still isn't crawling yet but she is well on her way. Kayla has been selected as the regional 'Youth Ambassador' for Easter Seals! That's my girl!
September 28, 2006
14 Months
25 lbs. 5 oz. 33 1/2 in.
Kayla's story was highlighted on the 2006 Jerry Lewis MDA Labor Day Telethon which aired locally in the Sacramento region.
August 28, 2006
13 Months
25 lbs. 12 oz. 33 1/4 in
Kayla made her first attempt at real communication earlier this month and did her first 'baby sign' for the word "milk". YEAH!
July 28, 2006
1 Year/10 Months Adj
24 lbs. 33 in.
Kayla is 1 today! We had a huge celebration of her life with friends and family from all over the country. What an amazing milestone for a girl that wasn't supposed to live to see 1.
June 28, 2006
11 Months/9 Months Adj
22 lbs. 12 oz. 32 5/8 in.
Kayla took her first trip on an airplane. On that trip to Florida, she took her first sip from a straw, something that doctors said she wouldn't likely do because of her low facial tone and open mouth posture. Go Kayla!
May 28, 2006
10 Months/8 Months Adj
21 lbs. 8 oz. 31 3/4 in.
Kayla is finally sitting up without any support. She has been completely ventilator free for almost a month now! YEAH!
April 28, 2006
9 Months/7 Months Adj
20 lbs. 6 oz. 30 3/4 in.
Kayla is almost able to sit up on her own and her head control is getting better every day. She still gets tired quickly but has such determination.
March 28, 2006
8 Months/6 Months Adj
19 lbs. 14.5 oz. 29 3/4 in.
Kayla is finally off of the ventilator during all waking hours and for short 1 hour naps. She no longer needs to be tube fed. Yeah! She is starting to coo and make all sorts of new sounds. Oh, and she rolled over on her own for the first time at the beginning of March! That's my girl!
February 28, 2006
7 Months/5 Months Adj
19 lbs. 6 oz. 28 3/4 in.
Kayla is learning to hold her head upright when sitting. She is also starting to roll from side to side on her own now. Kayla is off of the ventilator for 12 hours a day.
January 28, 2006
6 Months/ 4 Months Adj
17 lbs. 5 oz. 26 3/4 in.
Kayla is able to lift her head slightly when on her tummy. She also started sucking her thumb and batting at her toys over her playmate. Kayla is now off of the ventilator for 8 hours a day.
December 28, 2005
5 months/3 Months Adj
14 lbs. 4 oz. 25 1/2 in.
Kayla started smiling more and for longer periods. She is also starting to come off of the ventilator for short 30 minute spurts, 3 times a day and is handling it well. GO KAYLA! We heard her voice for the first time on the 2nd. What an amazing experience after not hearing her make any sounds for 5 months.
November 28, 2005
4 Months/2 Months Adj
11 lbs. 7 oz. 24 in.
Kayla came home on the 8th and is showing huge improvements already. She began tracking people and especially loves her mechanical birds above her bed.
October 28, 2005
3 Months/1 Month Adj
9 lbs. 4 oz. 23 in.
Kayla began breastfeeding but is still being tube fed to keep up her weight. Kayla is getting stronger and might be able to finally come home in the next month or so.
September 28, 2005
2 Months Old
8 lbs. 2 oz. 21 in.
Kayla was diagnosed with Myotonic Muscular Dystrophy. She had a tracheotomy and g-tube surgery to help support her breathing and feeding. It's the first time we have seen Kayla without tape all over her face. She is so beautiful!
August 28, 2005
1 Month Old
6 lbs. 4 oz. 19 in.
Kayla is officially 1 month old today! What a celebration especially after the doctors said she wouldn't make it this far. She has such determination and a strong will to live. KAYLA, YOU GO GIRL!
July 28, 2005
Happy Birthday
4 lbs. 15 oz. 18 in.
Kayla was born at Sutter Memorial Hosptial in Sacramento, CA by emergency c-section at 32 weeks gestation (7 months). Kayla was unable to breathe, move or eat by mouth and is on a ventilator and has a nasal feeding tube put in. The doctors said she has 'floppy baby syndrome' but haven't said much more yet.
5 Years Old
50 lbs. 4 ft.
Kayla is starting Kindergarten soon. She is talking so much now, it just amazes me. She is using 4-5 word sentences. Her language took off as soon as we put her into an after school day care program where she is fully integrated.
July 28, 2009
4 Years Old
48 lbs. 3 ft. 9 in.
Kayla is starting her second year of pre-school soon. She is signing over 500 signs now and her comprehension is really good. She is still struggling with expressive language but is able to say two to three words together although her speech is hard to understand so we are looking into a communication computer so that she can communicate with her peers more easily.
July 28, 2008
3 Years Old
40 lbs. 3 ft. 4 in.
Kayla is walking really well now and hasn't used her walker in over 8 months. She is signing 250 signs now which is great since her speech is delayed.
July 26, 2007
2 Years Old
35 lbs. 38 in.
Kayla took her first steps independently two days before her second birthday. What a miracle! She's still using a walker but is getting stronger everyday and we hope she will be walking on her own very soon.
March 28, 2007
20 Months
30 lbs. 36 in.
Kayla is now able to walk with the aide of a walker although she is still a bit unsteady and is dinging up all of our walls in the house. She is able to communicate with us and has a signing vocabulary of over 25 baby signs. Kayla is also starting to communicate verbally more and can say up to 10 words now, including her new favorite word, "bubbles".
November 28, 2006
16 months
27 lbs. 9 oz. 34 1/2 in.
Kayla started pulling up to standing last week and started crawling today! Kayla can do 10 signs now and can say 3 words, Dada, Mama & Up.
October 28, 2006
15 Months
26 lbs. 8.5 oz. 33 3/4 in.
Kayla started walking along our couch this week! She still isn't crawling yet but she is well on her way. Kayla has been selected as the regional 'Youth Ambassador' for Easter Seals! That's my girl!
September 28, 2006
14 Months
25 lbs. 5 oz. 33 1/2 in.
Kayla's story was highlighted on the 2006 Jerry Lewis MDA Labor Day Telethon which aired locally in the Sacramento region.
August 28, 2006
13 Months
25 lbs. 12 oz. 33 1/4 in
Kayla made her first attempt at real communication earlier this month and did her first 'baby sign' for the word "milk". YEAH!
July 28, 2006
1 Year/10 Months Adj
24 lbs. 33 in.
Kayla is 1 today! We had a huge celebration of her life with friends and family from all over the country. What an amazing milestone for a girl that wasn't supposed to live to see 1.
June 28, 2006
11 Months/9 Months Adj
22 lbs. 12 oz. 32 5/8 in.
Kayla took her first trip on an airplane. On that trip to Florida, she took her first sip from a straw, something that doctors said she wouldn't likely do because of her low facial tone and open mouth posture. Go Kayla!
May 28, 2006
10 Months/8 Months Adj
21 lbs. 8 oz. 31 3/4 in.
Kayla is finally sitting up without any support. She has been completely ventilator free for almost a month now! YEAH!
April 28, 2006
9 Months/7 Months Adj
20 lbs. 6 oz. 30 3/4 in.
Kayla is almost able to sit up on her own and her head control is getting better every day. She still gets tired quickly but has such determination.
March 28, 2006
8 Months/6 Months Adj
19 lbs. 14.5 oz. 29 3/4 in.
Kayla is finally off of the ventilator during all waking hours and for short 1 hour naps. She no longer needs to be tube fed. Yeah! She is starting to coo and make all sorts of new sounds. Oh, and she rolled over on her own for the first time at the beginning of March! That's my girl!
February 28, 2006
7 Months/5 Months Adj
19 lbs. 6 oz. 28 3/4 in.
Kayla is learning to hold her head upright when sitting. She is also starting to roll from side to side on her own now. Kayla is off of the ventilator for 12 hours a day.
January 28, 2006
6 Months/ 4 Months Adj
17 lbs. 5 oz. 26 3/4 in.
Kayla is able to lift her head slightly when on her tummy. She also started sucking her thumb and batting at her toys over her playmate. Kayla is now off of the ventilator for 8 hours a day.
December 28, 2005
5 months/3 Months Adj
14 lbs. 4 oz. 25 1/2 in.
Kayla started smiling more and for longer periods. She is also starting to come off of the ventilator for short 30 minute spurts, 3 times a day and is handling it well. GO KAYLA! We heard her voice for the first time on the 2nd. What an amazing experience after not hearing her make any sounds for 5 months.
November 28, 2005
4 Months/2 Months Adj
11 lbs. 7 oz. 24 in.
Kayla came home on the 8th and is showing huge improvements already. She began tracking people and especially loves her mechanical birds above her bed.
October 28, 2005
3 Months/1 Month Adj
9 lbs. 4 oz. 23 in.
Kayla began breastfeeding but is still being tube fed to keep up her weight. Kayla is getting stronger and might be able to finally come home in the next month or so.
September 28, 2005
2 Months Old
8 lbs. 2 oz. 21 in.
Kayla was diagnosed with Myotonic Muscular Dystrophy. She had a tracheotomy and g-tube surgery to help support her breathing and feeding. It's the first time we have seen Kayla without tape all over her face. She is so beautiful!
August 28, 2005
1 Month Old
6 lbs. 4 oz. 19 in.
Kayla is officially 1 month old today! What a celebration especially after the doctors said she wouldn't make it this far. She has such determination and a strong will to live. KAYLA, YOU GO GIRL!
July 28, 2005
Happy Birthday
4 lbs. 15 oz. 18 in.
Kayla was born at Sutter Memorial Hosptial in Sacramento, CA by emergency c-section at 32 weeks gestation (7 months). Kayla was unable to breathe, move or eat by mouth and is on a ventilator and has a nasal feeding tube put in. The doctors said she has 'floppy baby syndrome' but haven't said much more yet.
