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...
It's 2:00 am and I can't sleep. Kayla has been sick over the last week and although she does pretty well during the day, when she gets into a deep sleep she sometimes has trouble breathing well. I woke up this morning to the sound of her breathing loudly and the pulse oxymeter alarm going off which tells us that she is not properly saturating oxygen in her blood. I just gave her a breathing treatment and did some percussion on her back to loosen up the gunk and now I can't sleep so I thought I would take a minute to let you know what's going on.
At 7:30 am this morning, I'm going in for cataract surgery. You are probably wondering, why would a 42 year old have cataracts? Well, I"m not the only one in the family. Kayla was diagnosed with cataracts when she was 2 but the doctors are watching them for now as they are slow progressing. Jeff was diagnosed with cataracts earlier this year but we have no idea why he would get them at 43. And then there's me. Within the month of October, my vision started getting blurry and when I went to my opthamologist to get new glasses, he told me that I had fast progressing cataracts and that if they were impeading my vision enough that I should consider having them removed. I can see still, it's just that things are blurry and its hard to see well on the computer. I work on the computer most of the day so that's a big problem. I have been working about 8 inches from the screen for the last month which is about to drive me crazy. Also at night, any lights including headlights, taillights, street lights, and stop lights all have multiple halos and are multiplied. If there is one stop light, I see 3. It's really strange but they make a perfect triangle with the main light in the left bottom corner and the other two just above and to the right of the main one. At first I thought I was losing it but realized quickly that I was having serious vision problems.
If you aren't aware, cataracts are a symptom of myotonic dystrophy. In this lovely disease, cataracts form early and are typically a very unique type of cataract called "Posterior subcapsular irridescent cataracts". Also known as "Christmas Tree Cataracts" because the cataract has an irridescent quality to it like shiny confetti you would throw down on the table at a party. Here is some information from the vision page of the Myotonic Dystrophy Foundation website if you want to learn more:
"Blurred Vision: Visual impairments in patients with DM1 and DM2 are most often caused by cataracts. Posterior subcapsular iridescent lens opacities represent an initial phase of cataract formation in myotonic dystrophy and are detectable only with slit lamp biomicroscopy. These opacities are usually found in patients who have not developed any visual symptoms. The presence of this type of lens opacities and more mature cataracts may be the only sign of the disease. Posterior subcapsular iridescent lens opacities are highly diagnostic of DM1 and DM2 although not pathognomonic. Glare and blurriness of the vision develop as the progression of the lens opacities into stellate cataracts and eventually mature cataracts, which are indistinguishable from usual cataracts. Cataracts in DM1 and DM2 may progress faster than usual cataracts, and thus patients with DM1 and DM2 may be presented with early-onset cataracts."
Well, this is probably more than you ever wanted to know about cataracts but this is just a reality of this disease and of our lives. Fun, huh?
Well on a more positive note, we got Kayla's school pictures yesterday and they are adorable. I scanned it so you could see (below). The first set of pictures the school sent home were horrible. Kayla looked depressed and didn't smile at all. Her glasses were glaring and it was just overall not the best picture of her. So of course, I insisted on a re-take and went there myself to make Kayla laugh so we could get a sweet Kayla smile. When Kayla isn't smiling, she looks sad and that is not how I wanted to remember her first year of school. Isn't she adorable!
Kayla's First School Picture (Pre-School - 3 years old)
For Kayla's 3rd birthday this year, we decided to have some pictures made of her at Enchanted Images near our home in Rocklin, California. A good friend of ours recommended them and they were right, the photographers were really sweet and compassionate about all we'd been through over the last few years with Kayla. They took there time and got some really amazing pictures of Kayla, Jeff and me. I especially love the one of us walking in our bare feet. It really captures Kayla's carefree and loving spirit. It's also very symbolic for us to have pictures of her walking since we were told she may never walk. As you all know, Kayla was diagnosed at birth with congenital myotonic dystrophy and her prognosis was very poor. Kayla has proven to be an amazing fighter and has a strong will to live. She's the happiest kid I've ever met and spends most of her time trying to make sure everyone around her knows that they are loved. She's a hugger and kisser and I've heard that she rescues all the kids at school when they get hurt. That's my girl! Well, I had to share these photos with you as these moments are what keep us going. It's nice to have some amazing 'normal' moments in all of the craziness we'd had in our lives.
We had a real scare with Kayla today. I got a call this morning from one of our nurses that she fell out of one of our kitchen chairs and hit the tile floor. She seemed upset at first but then was able to calm down. It didn't seem like she was hurt until I got a call that she had thrown up about half an hour later. I raced home just in time to meet the paramedics at our house. They put her in a neck brace and rushed her down by ambulance to the ER at UC Davis.
Kayla was such a trooper and didn't complain that much about being locked down for most of the day. We entertained her and tried to keep her spirits up. She is such a good little girl.
The doctors did a CT scan and several X-Ray's and confirmed that she didn't have any damage from the fall. We were so relieved until the doctor mentioned that she had brain stem and frontal lobe atrophy consistent with congenital myotonic dystrophy. That was a punch in the gut that I wasn't expecting. I know that it's a reality of this darn disease but to hear the doctor say those words about my angel Kayla, really took my breath away. I cried on the ride home but then got through it and I'm ok now. I know that I can't focus on that right now as Kayla has done more than anyone expected her to so we feel very blessed that she is even here with us. I really believe that an angel scooped in to save Kayla from that fall. When I got home I saw how she fell and I realized what a miracle it was that she's ok.
On September 19, 2008, we went to Manhattan Beach, for the 2008 Myotonic Dystrophy Family Conference. The conference was great and we were able to connect again with lots of our friends that we've made throughout the years. The Myotonic Dystrophy Foundation (MDF) helped to sponsor the conference this year and I had a table during the conference where we met families and provided medical information. We officially introduced our new websites, www.myotonic.org where we have comprehensive content about myotonic dystrophy and our new online community site, www.community.myotonic.org where families living with myotonic dystrophy can connect.
Going to Manhattan Beach was little surreal. I lived in Manhattan Beach before going to business school in 1998 and all of the memories of how simple life used to be came flooding back to me. The hardest decision that I used to have to make was whether or not I would play beach volleyball or rollerblade until the sun went down after work. I really miss those simple days but I wouldn't give up my life right now if it meant not having Kayla in my life.
I got a phone call today from a family who has a new baby in the NICU who is struggling with congenital myotonic dystrophy and that call reconfirmed to me how important the work I do is. The mom cried to me and told me that I saved her life and gave her hope by documenting Kayla's story in my blog. I cried my eyes out knowing that the experiences that we had with Kayla were helping someone else. That call is one that I will remember forever. Being able to help someone in need is the most rewarding thing I have done in my life.
Well, I need to go feed Kayla so I'll write more later.
Kayla dancing with Nana Jane's cane at the MDA Jerry Lewis Telethon - 3 year 1 month old
Kayla and I on the MDA Jerry Lewis Telethon - 3 years 1 month old
Kayla and I at the Muscular Dystrophy Association (MDA) Stride N Ride
Kayla cooling off with an ice cream sandwich at the MDA Stride N Ride
Jeff, Nana June, Kayla and I went to the MDA Stride N Ride fundraiser this morning. We had a blast! It was great seeing everyone and helping to raise money for the MDA.
Well, I never imagined not writing in my journal for 9 months but life has been very busy. I'm not sure how to really recap the last 9 months so I won't really try. Here are a few of the highlights.
Kayla started walking without the aide of her walker around her second birthday but it took her a few months before she could walk completely independently. Kayla still loses her balance easily so we have to stay close by to make sure she is safe. She is also able to walk up the stairs if someone stands by to assist her. She's such a big girl now. Speaking of big, she is 42 lbs and 43 inches tall already. She looks like a 5 year old.
More news; after a year working at eBay again, I made a decision recently to leave to help launch a website, www.myotonic.org, for the Myotonic Dystrophy Foundation where I've been a board member for almost 2 years. It's a family advocacy group started by 8 different families who are affected by myotonic dystrophy. Our focus is education, advocacy, community support and research. We also have a community site where families can connect at: www.community.myotonic.org It's been great to have time to do something that makes a difference in peoples lives and although I miss my eBay friends, it's been the best decision of my life. I now have time to focus on helping to fight this disease and to make a difference. In my free time, I'm still helping the MDA to work on fundraising events in our area. It feels so good to be in a space where Kayla is relatively healthy and that I can do such important work.
Well, we have had a really nice summer overall. We took Kayla back East to Baltimore again this summer but unfortunately it was for Jeff's father's funeral. Jeff's dad died from complications from Alzheimers. It was a really sad time but it was very special for Kayla to be able to spend time with her cousins on both Jeff's side and mine. Kayla really enjoyed playing with her cousins and it was amazing to see her running around with them, happy as ever.
Kayla's First Day of Pre-School - 3 years old
Kayla started pre-school on August 19th. It was one of the happiest moments for us to see her going to school after being told that she may not likely survive past the first year. Kayla is such a fighter. She's attending a special day class where she will be integrated into a regular classroom throughout the week. It's a perfect setting for her and she loves her teachers, aides and therapists. Her teacher Mrs. Kelly is a bundle of energy and I can tell that Kayla adores her. She also has a signing aide in the classroom that is helping her to continue building her signing vocabulary. She is now signing over 170 signs and is begining to put words together to let her needs known. She's still struggling with her speech but with lots of therapy and help from us and her care providers, she's coming along. I have faith that Kayla will be able to speak so we are working as hard as we can to help her but meanwhile, we continue to use ASL signs.
Today is Jeff's and my 5th wedding anniversary. I can't believe we've survived 5 years even with all we've been through. We are going our tonight for a nice dinner to celebrate. It seems so ironic that we got married on Labor Day weekend considering that it's the weekend dedicated to fight muscular dystrophy and all of the other neuromuscular diseases. Speaking of the weekend, tomorrow, on Labor Day, Kayla will have her story told again on the Sacramento region Jerry Lewis MDA Labor Day Telethon. For those of you living in the Sacramento region (extended), tune in on channel 58 from 10:45 am to 11:30 pm to see Kayla's spot and to hear our interview. They are interviewing my mom, my aunt June (mom's twin) and I about how this inherited disease affects our family. It's the first time that I'll be talking about the disease and how it relates to my mom and I. I'm a little nervous but think it will be liberating to talk about it. I feel like I've been living someone else's life as I've been nervous to talk publicly about it but I'm finally ready. If you are able to, you can also make a donation during the telethon. Make sure you tell the person on the line that it's in honor of Kayla. :) I love being able to share Kayla's story with everyone and for telling how she's beaten the odds.
Well, Kayla wants me to pay attention to her so I'm going to sign off for now. I'll write more later.
Kayla with Nana Jane and Papa Pharis at UC Berkeley
Nana Jane and Papa Pharis taking Kayla to a Mark Knoefler concert in Berkeley, CA. We took Kayla to the same concert 2 years ago, right after she was free of the ventilator. It's so great to enjoy normal things like going to concerts. I hope we can stay in this place where Kayla is healthy for a long, long time.
Jeff, Kayla and I at the Auburn Girls Basketball Game at Stanford
Jeff, David (Kayla's nurse and our friend), Kayla and I met my friend Ruthie Bolton to watch a NCAA First Round Playoff basketball game where the Auburn University Lady Tigers played. The game was at Stanford University. Ruthie and I played on the Auburn team back in the late 80's.
Kayla and I at the 2007 NCAA Tournament - Auburn vs. Wash St. Women's Basketball
at Stanford University
We had a blast and Kayla really seemed to enjoy herself after she got used to the noise. It was a really noisy game so for the first 15 minutes she cried and wanted to leave but then seemed to love it.
Well, as you can tell from my lack of journal entries in the last 5 months, life has been busy. So much has happened in the last 5 months that I’m not even sure where to begin.
It's hard to believe that Kayla has had her trach out for over 6 months now. Although the surgery was a bit traumatic, she is healing nicely and the trach site closed within the first month and a half. She still plays with it and seems puzzled that it’s gone. It’s been a part of her since she was 2 months old. When I ask her, “Kayla, where’s your trach?”, she’ll point to her neck so she is still very aware of having had it. Now at night when she is sleeping, I just sit and watch her breathe, reveling in the pure miracle of her life. I think back to how the doctors gave us the option to pull her life support. That was such a scary time and to see her now, it’s sometimes hard to remember all the stress we were under back then.
In June, Jeff and I took Kayla back to Baltimore for an early 2nd birthday and celebrated with both of our families and friends. My brother and his wife Dawn came with their kids and my cousin Laura brought her daughter Elizabeth and then on Jeff's side, everyone was there including a bunch of Jeff's old friends. This was the first time that most of Jeff’s family met Kayla so it was a very emotional day for everyone. It was especially sweet to see Jeff’s father, who has been struggling with Alzheimer’s for the last few years, meet Kayla for the first time. We were able to share a few videos of Kayla and let everyone into our world for a few minutes. Kayla had a blast at the party but was a little shy with all of the attention on her.
In July, our nieces, Shelby and Lindsay came out to visit for a couple of weeks. It was so fun having them here but it went way too quickly. They helped us plan and prepare for Kayla’s 2nd birthday. Two days before Kayla’s birthday, Kayla took 13 independent steps (with her braces on) across our TV room. Every day she gets stronger and stronger.
Today, she is able to walk with us just about anywhere by holding our hand. She gets tired quickly so we always have to have our stroller handy to give her breaks but it's truly amazing have her walk with us. Thank god she's walking now because if I had to keep carrying her for much longer, my back would break! :)
For Kayla's 2nd birthday, we had a pool party and celebrated with a bunch of family and friends. It was fun seeing Kayla get excited about opening her presents. What a huge change from last year when we were just beginning to help her to sit upright. Speaking of changes, Kayla is now 3’3” tall and weighs 38 lbs. She looks like a 4 or 5 years old now. No one can believe that she’s 2 and was a preemie. She definitely has the Vittek/Harvey genes.
In August, the MDA brought over a television crew to our home to follow up on last year's story for this year's 2007 MDA Jerry Lewis Labor Day Telethon. Kayla was freaked out by the camera and spent most of the time crying and looking away from the camera. We got a few shots of her smiling and dancing but luckily the crew was skilled at editing and the video came out really nicely. Here a link to the final video that was aired on this past Labor Day.
September was the craziest month ever. We took Kayla to Washington State for a wedding of a good friend of ours. We had a blast and took Kayla sightseeing to all of the local waterfalls in the area. The wedding was located very close to the gorge. What a beautiful area! It was so fun having Kayla with us. We were so excited to try out our hiking back pack but quickly realized that Kayla was already too big to fit in it. Moments like that make us realize how much we have missed over the last two years. After the wedding, we rushed home on Sunday to be interviewed live on the MDA Jerry Lewis Telethon. They aired Kayla’s story the night before and then interviewed us that day. We had Kayla with us, but she was pretty cranky from traveling and she had a pretty hard day. Overall, it was an amazing day and we raised over $800,000 for the MDA Sacramento region alone.
One week after the telethon, we took our first vacation in over 3 years and we took Kayla to Cabo San Lucas, Mexico for Jeff’s 42nd birthday. We had a blast and spent most of the time relaxing by the pool and eating. We stayed at the Sheraton Del Mar. The accommodations were nice and we had a room with a separate kitchen, bathroom, living and dining rooms overlooking the ocean. That week flew by and just didn’t seem long enough. This was the first time we had both just stopped to breathe and relax together. Unfortunately, Kayla got sick while we were there so it wasn't all down time. We could have easily stayed for at least another week but I had to get back to work.
At the end of September, I was invited to speak at the annual family conference on myotonic dystrophy held in Manhattan Beach, California. This is the conference that we attended one week after we got Kayla’s diagnosis in 2005. It was so nice seeing all of our friends and catching up with everyone, most of whom we hadn’t seen since last year’s conference. I also had the pleasure of finally meeting my fellow board members for the new Myotonic Dystrophy Foundation. I was asked to be on the board at the beginning of the year and have been helping to get the foundation up and running in my spare time, which I don’t seem to have enough of these days. We are planning on launching our new website for the foundation at the end of the year. I just received a small grant from the eBay Foundation to help us build out our community development program so I'm excited to get that going. Thank you eBay! If you would like to make a donation to help fund medical research, go to the "Our Links" page and click on the donation button and then select the 'Kayla Vittek Fund".
In October, we took Kayla to the NICU or Special Care Nursery reunion. We got to see all of our old friends, nurses and doctors from Sutter Memorial where Kayla was born. It was a fun day and Kayla seemed to have a blast. It was great walking Kayla into the NICU and PICU and seeing the shock on everyone's face. No one can believe how great she is doing.
In the last month, Kayla has really improved her balance and is now walking all over the house by herself. It took a couple of months for her to gain the confidence to take off by herself, but now we can’t seem to keep track of her. Every time I turn away, she runs off into another room. I think she enjoys running away from us and being independent. Kayla is still wearing AFO’s (Ankle Foot Orthosis) or braces which will most likely be part of her life forever. Most kids with myotonic dystrophy wear them to keep their feet flat. Kayla has a tendency to go up on her tippy toes and without the AFO’s, eventually, her heal cords would shorten and she would need a heal cord lengthening surgery to correct them. We are doing everything we can to avoid that so she wears her AFO’s most of the day now.
Kayla has had a bunch of colds over the summer as we have gotten her out of the house more and more to mingle with other kids. It’s tough because we want to protect her from getting sick since her lungs are still very weak and it takes her a long time to fight off a cold but we have to balance that with wanting to help her socialize with other kids. It’s always a tough call cause it seems like such a great idea to get her out and about until she’s sick and then Jeff and I end up staying up half the night giving her breathing treatments and pounding her back to help loosen up the gunk. I have a feeling this will be a lifelong battle. UGH!
Kayla has really taken off with learning and she now knows over 60 ASL (American Sign Language) signs and says around 22 words. Kayla was recently tested for her level of speech and came in at 18 months. She is currently 25 months (adjusted for prematurity) so her speech is about 7 months delayed. She makes up for that delay in other areas though. Her test results for comprehension came back in the 32 month range. So she’s 7 month behind in speech and 7 month ahead in comprehension. I guess she breaks even then, huh? We are so pleased with these test results because with her disease, we expected the speech delays but never expected her to test so well in comprehension. I guess signing with her has really made a world of difference. If anyone else is interested in purchasing the videos that we use to help teach Kayla signing, you can go to www.babysigningtime.com or www.signingtime.com and they have 15 videos that Kayla absolutely adores. It’s all she wants to watch.
Kayla knows so many new signs; it’s hard to keep up with all of them now that I’m working full time. Here are a handful of the words she knows now: cracker, ice cream, want, book, hungry, apple, cheese, cereal, candy, help, fish, cheese, hot, like, boy, girl, baby, signing, time, dog, cat, bear, horse, pig, fish, puppy, butterfly, flower, shoes, hat, coat, pajamas, brush teeth, wash hands, potty, please, thank you, sorry, boat, car, home, me, love, hug, ball, play, all done, more, again, stop, orange, red, yellow. I know I'm missing a lot.
Kayla will be going in for surgery soon to repair her feeding tube hole which hasn't closed on its own. Every time she drinks milk or any fluid, she leaks out of her g-tube hole. It's pretty crazy to see milk coming out of her stomach but I guess things could be worse. She will have surgery to repair that and an umbilical hernia which happened when she initially had the g-tube put in at 2 months of age. Surgery is always a risk for Kayla since patients with myotonic dystrophy are at risk for complications with anesthesia. We have a friend who died after complications so even a minor surgery like this is a little scary for us. I'll let you know more about the timing when I hear back from the surgeon.
Anyhow, that's all for now. Thanks for keeping up with Kayla and for being so patient with my delay in updating Kayla's journal. Hugs & Kisses, Lisa
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!
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.
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