THANK YOU, THANK YOU, THANK YOU!

Well, we are coming to the close of another extraordinary year so I wanted to take a minute to thank all of you who have been supporting our family and sending so many prayers for Kayla. We especially want to thank all of the nursing staff who has been at home with us over the last year. It is amazing that one year ago we had almost 24/7 nursing care and Kayla was on a ventilator full time. Thanks to Grace, Maria and Cheryl who worked the night shift and allowed us to try and get some well needed sleep but who sometimes ended up being our marriage counselors when we were unable to sleep. Michelle, Laurie, Angie, Pat, Sonja and Barbara who helped us during the day and evening and were there for us for all of our family events, holidays and daily life routines to provide support and love. And last but definitely not least David, who gets our vote for “Nurse of the Year”. David began working with Kayla in January of last year and has become Kayla’s primary nurse. He has been instrumental in helping keep Kayla healthy. He has been so dedicated to helping Kayla with her therapies, reinforcing her signing, and providing a lot of love for our little girl and to Jeff and me. He has truly become part of the family. Thank you to everyone at Action Home Nursing and especially Kayla’s case managers Yolanda and Roxanne for being so wonderful and for helping us get home so quickly from the hospital. Thanks to Terry for helping us with the incredibly difficult task of scheduling nurses and for being so flexible. Thanks to Karen Hahn for creating such an amazing nursing agency that has provided such a wonderful service and amazing nurses for Kayla. We wouldn’t be where we are today without you! Thank you to all of Kayla’s 14 doctors who have each played a role in Kayla’s care. Thank you to all of the therapists, JulieG, Julie F, Kim, Nancy, Tricia, Christi, Nancy & Rachael who have helped us learn what we need to know to help Kayla ourselves.

And finally thank you to our families and friends who have been there for us through our ups and downs. Your unconditional love has been amazing. Thanks to all of our new family and friends from the Muscular Dystrophy Association (MDA), we thank you for all of your amazing support for Kayla and for our family. over the last year. A special thanks to Kayla’s cousins Shelby, Lindsay, Sarah, Danny, Brennan, Logan, Katie, Andie Lee, Noelle and Maya for loving your cousin unconditionally. Thank you to Kayla’s ‘Aunt’ Linda for helping Jeff and I get through a very difficult period over the last year. Thank you to all of the rest of our families, I’d name you all but that might take a few pages. And one final special thank you to Grandpa Pharis and Grandma Jane for EVERYTHING you have done for us since Kayla was born. You have gone above and beyond with your love and support for Kayla, Jeff and me. And lastly, thank you to Kayla for being such a miracle in our lives; you are one courageous little girl with the most contagious, warm and wonderful spirit. Words can’t express the joy that you have brought into our lives. WE LOVE YOU WITH ALL OF OUR HEARTS!

As I look back on what has happened with Kayla over the course of a year, I am overcome with emotion. We have now been home from the hospital with Kayla for just over a year. Kayla weighed 10 lbs the day we arrived home. She has almost tripled her weight over the year and now weighs a whopping 29 lbs. At Christmas last year we got the news that Kayla was getting strong enough to begin the 5 month long weaned process from the ventilator, an early gift from her pulmonologist. That had to be one of the happiest days of our lives. The upward trend in Kayla’s progress from that date has just been unbelievable. At Christmas last year Kayla could barely move her neck or reach for toys while lying on her back. She is now sitting up on her own, pulling to standing, cruising, and a few weeks ago she began crawling. Kayla has started to use a reverse walker to learn to walk but is still in the early stages. Her little legs get tired quickly but she keeps working at it every day. Kayla is now signing 12 words and learning more and more every day. She is saying 5 words now and a few words we haven’t figured the meaning to yet. In the last year, Kayla went from being almost completely fed by a feeding tube to not using the feeding tube now for 9 months. Kayla is eating all sorts of foods and is a great eater (like her dad). She has had Japanese, Chinese, Vietnamese, Thai, Italian and American food and seems to love them all. That’s my girl!

It has been an incredibly busy year; in total we have logged over 195 hours of therapy sessions (thanks to California state programs for the disabled) for Kayla including physical therapy twice a week, speech therapy twice a month, music therapy once a week, child development once a week and a sensory motor gym once a week. In between all of these appointments we have done therapy with her every day. It has been worth every minute we have spent because I truly feel that we have given Kayla a jumpstart on life. We have also had over 50 different doctors appointments this year alone. Now I see how the year has flown by.

Jeff has been focused on working hard to keep the family going financially but he has had a rough year including the long term hospitalization of his father, a slip and fall accident that has caused him many issues including a double hernia surgery just before Thanksgiving. Jeff is recovering from that and is now back at work hoping to start the New Year off healthy.

As far as my life goes, I have put my energy into Kayla in the last year. I have put my personal and work life on the backburner but my New Year’s resolution is to get back to things like exercising, taking care of myself and getting back to work (at home). And of course, taking care of Kayla.

If you have a moment, please say a prayer for our good friends, Angela and Bob Kott, and their two month old little angel, Trevor, who is in the fight for his life right now, battling infant leukemia. They have already spent the last two months in the hospital with him and the doctors believe that he may be there for another 8 months. At the age of 2 months old he is already enduring chemo therapy and with another 4 rounds of chemo to go, little Trevor will need a lot of love and prayers right now. They have set up a fund for little Trevor to help out with expenses so if you would like to help, please contact me at lisa@global.t-bird.edu or by phone (916) 788-2798. We love you Angela, Bob, Kendall, Lauren & Trevor!

Please stay healthy and have a wonderful holiday.

Love & Peace,

Lisa

Kayla Started Cruising, Crawling and Signing

Just after I updated the journal on October 22nd (14 months, 3 weeks old) Kayla took her first steps along the couch in what I like to call “couch walking” or “cruising”. There was a favorite toy of hers that was at the end of the couch and she took small, very wobbly steps towards the toy and once she got it in her hand she looked so amazed and proud of herself. It is such an amazing milestone for little Kayla. The doctors didn't expect Kayla to survive the first year let alone begin hitting such milestones so early. After all this little girl has been through she keeps amazing me every day.

In the beginning of November Kayla started blowing kisses. She has been giving kisses for a few months now but not blowing kisses until now. Kayla has also started learning simple commands. If I hold her up to the light switch and say, turn the light off, Kayla will reach out and flip the switch. She is so smart! She understands sit and stand as well. Sometimes she will stand and the bottom of our staircase that goes into the kitchen and with the gate at the bottom shut, she will hold onto the gate and sit and stand and sit and stand. She thinks it’s really fun and will giggle as she’s doing it. It’s awfully cute!

On November 15th Kayla started signing the word Mom. She had previously said Mama but did not start saying it again until recently. She still says Dada about every 15 minutes now.

On November 16th, our PT brought Kayla a walker to try out and Kayla took to it pretty well. She walked; a little unsteady, across our kitchen and seemed so excited to finally be mobile. We will try out several walkers to see which one works for her the best and then hopefully we will be able to order one for her. We are also looking into whether or not she will need a wheelchair in the future and are researching all of the options.

On November 21st, Kayla started pulling up from a sitting position to standing on her own. She also started signing the word ‘want’ so she can tell us if she wants something now.

On November 28th, on her 16 month birthday, Kayla started crawling for the first time without support. We were at her sensory motor gym class and she just got up and started crawling across the room. It was a beautiful moment and not without a few tears of joy. I think I used up a whole box of Kleenex and made the entire group of mom’s and therapists cry too. Ever since then, Kayla has been crawling more and more and now can easily get across our large family room and pull up on the baby gate at the entrance. She also likes to crawl into her blowup play room and now dives into it head first and thinks that is so funny. Kayla has the most infectious laugh. I’ll have to capture a video of it and post it for you to hear.

Kayla has added a few new signs to her vocabulary and now knows a total of 12 signs: milk, more, hi, bye, high five, big, eat, dog, want, again, all done and mom. Kayla is starting to clap more and more and can now do the gestures to the song, ‘If you’re happy and you know it….” Kayla is starting to try and vocalize a little bit more now too and can say Dada, Mama, Up, All done, and Baba (bottle). Of course she still can't talk without her purple speaking valve that covers her trach. The valve allows her to breath into the trach but won't allow her to exhale out of it so the air has to go past her vocal cords and out of her mouth which allows her to make sounds. It's still a little strange to see her cry without the valve because she makes all of the gestures and tears but doesn't make any sounds. We are still hoping that if she gets through the winter without getting sick, that the doctors will allow us to have her trach removed in the early Spring. We are keeping our fingers crossed.

That's all for now.

Please stay healthy and keep in touch.

Lisa