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

Kayla was Named the Easter Seals Youth Ambassador for our Region

Kayla has hit some new milestones again and I just couldn't wait to tell you about them. On Friday, Sept. 15th, in a moment of me feeing stressed and overwhelmed, Kayla looked up at me from her highchair and said "Mama". My whole world stopped at that moment and I scooped Kayla up and held her until I could stop crying. It was such an overwhelming moment of joy for me. That day she started making typical baby sounds like "ya ya ya ya ya" and "ba ba ba ba ba". Up until that moment she had only made squealing sounds and said the word "up" when she wanted to be picked up. On Monday Sept. 18th, Kayla said the word "Dada". Since that time, every time I pass a picture of Jeff in our house she says “Dada” It is so adorable. Now she is making a bunch of repetitive sounds and it seems she is on her way to real communication. It is such a miracle that a baby who didn't even make one sound until she was 5 months old, is now at 14 months old, beginning to speak. Once again, Kayla keeps proving to us that she is determined to fight her disease. She seems to be on a great quest to catch up for all the time that she has missed out on while she was so sick in the hospital at her birth.

We have been teaching Kayla 'baby signs' since we arrived home with her last November. She finally caught on to a few and is now clearly signing 'milk, hi, bye, high five, eat, dog and big. When we ask her how big Kayla is, she raises her arms over her head and giggles. It melts my heart every time. On Wednesday, Sept. 27th, Kayla started signing the word 'More'. Now she is able to let us know when she wants more food or wants to continue playing with a toy or hearing a story. It is so amazing to be able to communicate with her in this way. Kayla has also learned to shake her head for 'no' so she can tell us if she's full or done playing with a toy.

Kayla has also learned to scoot herself backwards off of the couch and onto the floor. She stands by herself against the couch usually with a big grin that says "hey, did you see that?” She hasn't quite started couch walking yet but I think she is well on her way. She also hasn't gotten enough strength to crawl forwards effectively yet but she is able to get from point A to point B by rolling and scooting herself around. In physical therapy we are working on getting her up on all her 4's but she can't stay in that position for more than a minute or two before getting tired and collapsing to the floor. I think her body is so big now that her arms and legs have trouble supporting her weight. Every day Kayla is getting stronger and stronger and we are hoping that she will be able to get there soon.

On Sept 16th, we took Kayla to LA where I was asked to be a speaker at our annual conference on Myotonic Muscular Dystrophy. Kayla had been sick and in the ICU less than a week before, so we had to wait until the last minute to see if she was able to travel without her oxygen. Luckily one of our friends in LA offered to loan us an oxygen tank while we were visiting so we were able to make the trip. Most airlines don’t let you travel with your own oxygen so without the help of our friends we wouldn’t have been able to go. Many members of our chat support group were at the conference and they were amazed at Kayla's progress and strength. During the conference, we heard many heart wrenching family stories from other families with MMD and we learned what a toll this disease can take on a family both physically and emotionally. The age of onset of the disease can vary from birth to mid 60's and 70's. Some of the stories I heard, made me think of my brother Steve who died by his own hands 20 years ago. During the conference, I found out from my mother that Steve was born with club feet, a clear symptom of congenital MMD, although it can happen for other reason as well. Steve didn’t learn to walk until he was 2 years old and had to wear braces for a long time. I wondered if Steve had gone undiagnosed with MMD and was suffering in silence. So many thoughts ran through my head including 'how in the world did we end up here?". It still baffles me that after being a collegiate athlete and having most of mine and Jeff's life focused on sports, that now we are dealing with a degenerative muscle disease in our family. I really have to scratch my head sometimes. One of the strange things for me was that I have always watched the Jerry Lewis Telethon over the years and felt a bond with the kids and families who told their stories. I guess I just never imagined that we would be one of the families on the telethon one day. The one thing I do know is that we have made some incredible friends through this experience; one's that I may have never had the opportunity to meet without going through this myself.

At the conference, one of the world-renowned doctors, Dr. Ashizawa, who studies Myotonic MD was there as a speaker. He has dedicated his life to studying MMD and working towards a cure. He talked about the ethics of saving babies like Kayla who may go on to have severe brain damage and a life that is shortened by the debilitating effects of the disease. It really hit home for us how lucky that we are for Kayla’s continued upward progress right now. Although most babies who are born as severe as Kayla don't survive, those who do don't usually follow such an encouraging path. To date, Kayla still has the most severe levels of MD of any child we have met so far but yet she is doing so incredibly well. I feel blessed every single day to be in the position that we are in. Jeff and I both know that there is no one in the world who can tell us when her disease might begin progressing further so we have really learned to live day by day and enjoy every moment we have with her right now.

On October 7th, I took Kayla on her first car road trip to the bay area to see an old friend and to visit my parents, sister and nieces in Santa Cruz for the first time in over a year. It was so great to get out and travel with Kayla. I turned her car seat around to face forward for the first time so that I could keep an eye on her and also let her watch movies. I have a baby signing time video that Kayla loves to watch so we watched it over and over again. Every time it ended Kayla would look up at me with her beautiful brown eyes and sign for more. Part of the reason that I needed to keep an eye on her is because her new favorite thing to do is pull off her purple speaking valve (Passy-Muir Valve – or PMV) and then once that is off, she pulls at her trach tube. She has gotten her trach tube out now a handful of times so I have to keep a very close eye on her. Oh, the joys of having a trach!

On October 10th, I took Kayla to an outing with other some other special needs kids that go to the same Sensory Motor Gym as Kayla. We went to a farm where we played with farm animals and picked pumpkins. I added a new picture of Kayla with her pumpkin that is absolutely adorable. That day we also found out that Kayla was selected to be the Regional Goodwill Ambassador for Easter Seals for 2006-2007. We were so honored that Kayla was selected to represent Easter Seals in this area. We will be invited to several events throughout the year where Kayla will make appearances and I will get a chance to talk about her and how this disease has affected her and our family. On the 26th we have been invited to the Easter Seals annual dinner and Kayla will be officially introduced as the Youth Ambassador for the year. Easter Seals is the organization that we have Kayla’s physical and speech therapy through. They have been absolutely wonderful and very critical in Kayla’s current upward progress. WE LOVE EASTER SEALS!

Kayla is nearing 15 months old now and is getting so BIG! She weighs over 26 lbs. and is almost 3 feet tall. She is wearing size 2T to 3T clothes already. Everyone who meets her thinks that she is either 2 or 3 years old. It’s fun to see their faces when I tell them that she was a preemie and is only just over a year old.

Love to you all!

Lisa

Kayla's Story Was On the MDA Jerry Lewis Telethon

On Monday, September 4th, Kayla was highlighted on the 2006 Jerry Lewis Labor Day Telethon in the Sacramento region. They aired her story at 8:00 am and 11:15 a.m. and then interviewed us right after the 11:15 am showing. Kayla's nurse David, Kayla and I were interviewed by Channel 3/58's Adrienne Bankert and Kayla started the interview off right by giving the reporter a high five on cue. Just like any typical 1 year old, Kayla spent most of the interview trying to get her shoes into her mouth. She enjoyed all of the attention and seemed amused when the crowd in the studio started clapping for her. After the interview, I got on the phones and took pledges for most of the afternoon with both my mom and David. The news reporter that took over for Adrienne that afternoon, Edie Lambert, kept telling viewers to make pledges for Kayla. We brought a recent photo of our family taken by a local photographer, David McKay, with us and had it at the desk with us while we were taking pledges. The reporter kept showing the picture of our family and kept saying "Do It for Kayla!” At the end of the day, we brought Kayla up to answer phones with us and then they did a final interview of us again to end the show. Kayla had her five minutes of fame that day.

We had a good day but were sad because Jeff had to fly back East to be with his dad for surgery to put a shunt in his brain so he wasn't able to be there with us at the studio. Jeff's dad was diagnosed with hydrocephalus and is still in the hospital recovering but he seems to be doing a little better every day. Please keep him in your thoughts and prayers.

Unfortunately, 3 days after the telethon, Kayla started showing signs of getting a cold again. We had been in the television station for over 8 hours that day so likely she got a bug while she was there exposed to so many people. On Thursday night, I stayed up with her all night and suctioned her every few minutes. Kayla wasn't able to hold her oxygen saturation for the first time since she was released from the hospital last November and we ended up having to give her extra oxygen through her trach. By the morning, I called the nursing agency and begged for some relief and David came by for a few hours to let me get some sleep. By the afternoon, we took Kayla in to see her pulmonologist and within a few hours, Kayla was admitted to Sutter Memorial Hospital again. Unfortunately, it was Jeff’s birthday on Friday so we were both having flashbacks to last year on Jeff’s birthday when we celebrated it in the NICU. Of all days to land back in the hospital! It seemed very surreal to be back and we were even in the same room in the Pediatric ICU as we were last year. The only nice thing about the experience was to see Kayla’s former nurses and doctors. They were amazed at the progress Kayla has made in the last year and they told us how impressed they were that we were able to keep her out of the hospital for 10 months. According to the nurses, most kids with respiratory issues end up visiting the ICU every couple of months after they are released. I'm sure that Kayla's improvements over the last year wouldn't have been possible if she had gotten a cold so we were really grateful that she has made it for so long without getting sick. Although isolating Kayla all winter last year was incredibly difficult, it really paid off.

I was hoping to get some sleep while Kayla was in the hospital but unfortunately, I spent most of my days, suctioning her and trying to untangle her from all of the tubes and wires that she was connected to. She seemed amused at taking her oxygen off of her trach and removing her EKG leads on her chest. Kayla had an IV put in her arm which made it very difficult to nurse her but with a little positioning; I was able to finally feed her. Kayla also had a roommate in the hospital that was waiting to have trach surgery and the poor little boy sounded like he was drowning in his own saliva most of the time. Every time his mother would leave the room, sometimes for up to 10 hours at a time, he would panic and cry until she returned. When he cried, then he would start choking on his saliva. It was the most horrible experience I have ever been through. There were so many moments that I was tempted to go over there and suction him myself but that obviously wouldn't have gone over well with the nurses. After one 7 hour session of his crying on Saturday afternoon, I thought I was going to lose my mind and I begged the nursing staff to move us to a different room. I felt like I was being tortured because I couldn’t do anything to help him besides push the nurse call light for him every once in a while. Unfortunately, the ICU was full and there was nowhere for us to go. That experience was one of the most trying experiences ever and I have never felt more helpless in my life. What a nightmare for that poor sweet little boy.

Kayla stayed in the ICU from Friday evening until Monday afternoon and she was finally released after getting some heavy antibiotics and lots of breathing treatments. Luckily, Kayla's lung x-rays didn't show any signs of pneumonia. Kayla finally started showing signs of improvements on Sunday night and by Monday she was released to go home with an order to follow up with her pulmonologist within a day or two. After getting Kayla home, on Monday her breathing became labored again and by Tuesday morning we were back at her pulmonologist’s office. The doctor prescribed some more medications for her and gave us the option of checking her back into the hospital. Since we have nursing care at home I decided to not check her back in to help keep her from getting any new bugs from all of the other sick kids in the ICU. Kayla is doing pretty well right now but is still requiring lots of suctioning and full time oxygen. We are hoping that the new meds will kick in quickly so that Kayla will finally be able to get some relief.

We will keep you updated on her progress over the next few days.

Lisa

Kayla Went to Her Frist Concert

Sorry about being so slow in updating Kayla’s webpage but so much has happened since Kayla was removed from her ventilator on May 2nd. Life has started to get back to ‘normal’ in many ways and we have had quite a summer. I celebrated my very first Mother’s Day on May 13th and having Kayla off of the ventilator was the best gift ever. On May 15th I took Kayla on her first trip to the Sacramento Zoo with another friend who has a daughter with special needs. We had a blast and it was great to get outdoors and just hang out.

On May 16th, Kayla began Speech Therapy at Easter Seals. We are hoping this will give Kayla a jump start since she wasn’t able to vocalize for so many months due to her intubation and trach tube. The therapist has taught us lots of techniques that we can use at home on a daily basis. On May 22nd Kayla had a follow-up eye exam that went really well. The doctors weren’t sure about Kayla’s vision up until now so it was such a relief to know that things are ok for the time being.

On June 6th Kayla began a summer swim program at Easter Seals. They have a therapy pool that is heated to 92 degrees so twice a week for the month of June, Kayla attended this program. They worked on lots of skills in the water although we had to refrain from any underwater lessons since Kayla still has a trach. It is kind of risky to be in the water with a trach since you can’t get any water near the trach but the benefits of the class outweighed the risks. This also gave Jeff and me a chance to meet a few other families with kids with special needs.

On June 18th Jeff celebrated his first Father’s Day. On June 20th, I unfortunately had to fly to Pensacola Florida for my Aunt Ida’s funeral. Aunt Ida died of Ovarian cancer at the age of 72. Ida was like a mom to me so it was a very difficult loss for me. Since Kayla was weaned off of the ventilator, I was able to take her with me. I met my mom at Oakland airport and we flew together so she could help out with Kayla. Kayla handled the flights (all 4 of them) really well. While we were in Florida, Kayla took her first sip out of a straw. It was a huge milestone for her since MMD causes quite a bit of facial weakness and it’s hard for her to close her mouth around the straw. She is such a champ!

On June 26th we took Kayla to a new Neurologist since we had differing philosophies from the Neurologist that Kayla saw in the hospital. Dr. Pinter was amazed at Kayla’s progress and basically told us to keep doing what we have been doing because it was working so well. In his report he wrote “Kayla’s parents know as much about MMD as any Neurologist.” It was flattering but a little scary to think that might be true.

On June 30th, Kayla went to her first concert. I met my sister Kathy, her kids and my parents at a Mark Knoefler and Emmylou Harris concert in Berkeley. We sat on the lawn and had a really great time. I can’t begin to tell you how happy I was that night. It was so amazing to sit there under the stars holding Kayla in my arms. I had such a burst of emotion all night long and have never appreciated life more and felt so happy.

Kayla got her first cold on July 11th. She tolerated it pretty well although we had to suction her every few minutes which gets pretty exhausting. Jeff and I had recently decided to give up night nursing so we ended up having to stay up with her all night and make sure she was able to breath. It was pretty exhausting but we got through it ok.

On July 23rd some of Kayla’s cousins from Maryland arrived for Kayla’s birthday celebration. Over the next few days the rest of my family arrived so we ended up with 15 people living at our house for over a week. There were 8 kids under the age of 10. The kids basically lived in the pool but we did make them come out for meals and to sleep.

In preparation for Kayla’s first birthday, on July 24th our friend and hairdresser gave Kayla her first haircut. She looked like such a big girl sitting there in the chair. Kayla’s cousins gathered around and watched the big moment as her hair fell to the floor.

On Kayla’s first birthday, July 28th, we took Kayla and her cousins up to Napa for a festival. Kayla spun a wheel in a game at the festival and won a $400 gift certificate for wine tasting in Napa. I guess we’ll have to save that until she’s 21. We got back home late that night to finish setting up the final detail for Kayla’s birthday party the next day. We celebrated Kayla’s first birthday in style and had 77 of Kayla’s closest friends over to the house for a swim party and luau. We had a jump house, body tattoos, bubbles, a video of Kayla’s first year, lots of food and drinks and of course every one swam in the pool. It was an amazing celebration of Kayla’s life. Both Jeff and I tried to make a toast but we both ended up breaking down and crying and were unable to speak. We were both so overcome with emotion all day.

On August 7th, the MDA brought a local television crew to our home to interview us about Kayla for the Jerry Lewis Labor Day Telethon in September. It will be aired just after 11 a.m. PST on Monday, September 4th, Labor Day. We aren’t sure if the segment will be aired nationally but if you have a chance watch and let us know.

On August 9th, Kayla has hit some amazing new milestones. We have been working with Kayla on baby signing and after a full year, Kayla finally did her first sign for ‘milk’. We are hoping that this will open up a whole new world of communication for Kayla. We work every day on teaching her new signs but for now she has still only done that one sign. Through this experience, we have learned to take things one day at a time. Kayla also recently started going from her tummy to pulling up to sitting on her own. She moves fairly slowly but she eventually sits up and continues to amaze us every day. Kayla is also getting mobile and can roll across the floor to get things that she wants to play with. Although she isn’t crawling yet, I’m sure that she will in the near future. Kayla is also now responding to our question “How big is Kayla?” by throwing up her arms over her head and laughing. It is so unbelievably adorable.

On August 16th, Kayla’s cousins, Shelby and Lindsay, came out to visit us from New Jersey. They were here for two weeks helping to take care of Kayla. On August 22nd, the girls and I went to volunteer at the Sacramento MDA Executive Lockup. It is where executives volunteer to be locked up in a faux jail and then they call their friends to bail them out. By the end of the day, we had raised over $40,000 in donations. Kayla was a hit with the crowd. It was an amazing experience for all of us. .

Thanks for being there for our family and supporting us through this experience. We love you all!

Regards,

Lisa

Kayla is Off the Ventilator - Time to Celebrate

Well, we finally got the news that we have been waiting for since Kayla was born last July. Kayla had a sleep study two weeks ago where she was tested off of the ventilator all night while being hooked up to monitors to test her Oxygen and C02 levels. Both Jeff and I slept with her in the sleep lab that night so we could be there if there were any complications. The test seemed to go well but we have been waiting for word from the doctor since then.

The doctor called us today to let us know that Kayla passed the test with flying colors and no longer needs to be on the ventilator! As of tonight, Kayla will be able to breathe on her own all night without any assistance. It will be so sweet to see her in her crib without all of the tubing and noises of the ventilator to keep her awake all night. We are pretty sure that she will sleep more soundly than she ever has before. Hopefully, Jeff and I can get some sleep to but it’s a big night for Kayla and we are both a little nervous right now. This is such a huge milestone for her and it will open up a world of new things for us as a family. Who knows, maybe traveling will be in our future sooner than we think.

Kayla will still have the trach tube in most likely until after next winter but we can live with that for now. We no longer need to travel with the ventilator or backup marine battery so getting around will be a lot easier now. We will still need to carry her suction machine around to help keep her secretions under control but it's relatively small so it’s not a big deal. We will also still need to carry her emergency travel bag with us at all times until her trach is able to be removed next Spring.

Kayla has been getting stronger every day and is almost able to sit up on her own without support. Her head control is getting better every day but she still gets tired and can't hold her head up for extended periods. She is eating really well and still does not need to be fed by her G tube. Kayla’s Gastroenterologist feels that with her continue weight gain that she will likely have the G-Tube removed in a few more months. Kayla has slowed down her growth a little which is good since she was gaining a pound a week for a while there. At that rate she would have been 30 lbs by her first birthday. Yikes! As of yesterday, Kayla weighed 20 lbs. 8 oz. and is 30 5/8 inches tall. Kayla just passed her 9 month birthday but is already in 12 to 18 month clothes. She looks more like a toddler than an infant these days.

Kayla began teething about 4 weeks ago and is currently cutting 5 teeth at once. She is really fussy from the pain but is able to get some relief from teething rings and orajel.

Kayla has been receiving weekly physical therapy and child development since we have been home and starting in June she will begin an aqua therapy program at a heated therapy pool run by Easter Seals. We will only be able to get her in the water from her chest down since she has the trach which is a direct airway into her lungs but every step forward is a move in the right direction. We are hoping to get her into our pool this summer too, hopefully by her first birthday.

Well, that’s all for now but we will be in touch!

Love to you all,

Lisa

Kayla Rolled Over

So much has happened over the last two and a half months, I’m not even sure where to begin. Kayla has hit so many new milestones recently, it’s just unbelievable. Jeff and I are learning to live day by day and enjoy every moment of her progress. We know that with a disease like Myotonic Muscular Dystrophy, there is no guarantee of how long the upward trend might last. We are so appreciative of each and every new milestone that Kayla has met so far. Hopefully we won’t bore you with every detail but even the smallest changes are monumental to us.

Kayla started being weaned from the ventilator on December 23rd starting with 30 minutes at a time, 3 times a day. She tolerated that very well and we have been able to increase that by 45 minutes every 3 days over the last two months. I am so happy to tell you that Kayla is able to come off of the ventilator for up to 5 hours at a time now, up to 3 times a day. She usually doesn’t stay awake for the entire 5 hours so we have to split it up over the day but basically she is off of the ventilator for almost all waking hours during the day. We are required by the doctor to always put her back on the ventilator when she falls asleep since she breathes shallower when she’s sleeping. The doctors are worried about her oxygen saturation levels dropping or her CO2 levels rising. Kayla will be scheduled for a sleep study in a controlled sleep lab in the next month or so. They will take her off of the ventilator overnight and closely monitor her O2 saturation and CO2 levels to see if she is able to be weaned from the ventilator at night. Until then, Kayla will remain on the ventilator at night.

Over the Christmas holiday, Kayla weighed 14 lbs. 8.5 oz. As of today March 21st, she weighs just over 20 lbs. She is growing so quickly, building tons of muscle mass and getting stronger and stronger by the day. Kayla is already off of the growth charts but that isn’t such a big surprise if you’ve seen Jeff and me. Kayla is now 29 1/2" tall and is wearing 12-18 month clothes.

Kayla sat up by herself in her booster chair for the first time on January 8th. She struggled to keep her head up by herself for very long but every day she gets a little bit stronger. On January 12th she started lifting her head up a little while lying on her tummy. That is a huge accomplishment for her since, not long ago, she barely moved her neck at all. On January 19th, she started purposefully batting at her toys when lying on her play mat. She now plays with her toys and grasps them with both hands trying to put them all in her mouth. If she can get a hold of something, it always ends up in her mouth now.

Kayla went to the cardiologist on January 17th to have a follow-up EKG of her heart. She still has a slight VSD (hole) so the doctors will continue to monitor her but they are hopeful that this issue may resolve itself. Kayla has not shown any signs of heart conduction problems which are very common in Myotonic Dystrophy. The heart issues with MMD usually show up later in life but the doctors will continue to monitor her over the years. Kayla received her first official pair of foot splints (AFO’s or Ankle-Foot Othosis) since she’s been home from the hospital. The AFO’s are from Shriner’s Children’s Hospital and are used to keep her feet from dropping (or pointing). The AFO’s keep her foot at a 90 degree angle to keep her Achilles tendon stretched out so that someday in the next year or so, she will hopefully be able to walk on her own.

Jeff’s cousin Linda came to visit us from Baltimore, MD on January 25th. She stayed with us for about 3 weeks and was an unbelievable help for Jeff and me. We really enjoyed her company and she had a chance to spend lots of time getting to know Kayla and got to see her hit lots of new milestones. Kayla started sucking her thumb the day Linda arrived. She learned to hold her thumb in her mouth by using her other hand to hold it in. What a smart little girl.

Kayla celebrated her 6 month birthday on January 28th. We bought her a chocolate cake and let her pretend to blow out the candles. She seemed totally amused by the ritual until we all started eating the cake without her, and then she seemed a little frustrated. On January 31st, Kayla was playing with one of her favorite toys and she figured out how to make it spin on her own. She kept spinning the wheels on the toy over and over again and seemed proud of herself for figuring it out.

On February 4th, Kayla had her first taste of solid food. We fed her baby oatmeal! It was really cute to see her facial expressions while she was eating. She really seemed to love it. We were a little concerned the first time she had solids that she might aspirate but she tolerated the food really well. On February 12th, Kayla's cousins, Maya and Noelle came to visit. They had a chance to see Kayla for the first time since her birth and they were able to hold her and feed her a bottle. I added some pictures to her photo album for February. On February 18th, Kayla held her bottle on her own for the first time. It’s a little heavy for her but she tries really hard to hold it on her own now.

On February 24th, we had a little scare. One of Kayla’s nurses seemed concerned that her fontanels on her skull might be closing early. They usually close at around 18 months but Kayla’s seemed to be closing a bit early. We took Kayla in for a skull x-ray right away but the doctor said everything looked fine. If there had been an issue, Kayla would have needed to undergo surgery. We were so relieved to hear that there wasn’t an issue.

On March 3rd, Kayla rolled over from her tummy to her back by herself for the first time! We all celebrated and took videos of her new accomplishment. Now Kayla rolls from side to side and is almost able to roll from her back to her tummy on her own. She works so hard during her daily physical therapy sessions. She seems really determined to push herself to learn new things. It almost seems like you can see the wheels turning in her brain as she figures things out.

On March 7th, we gave Kayla her first taste of vegetables. We gave her sweet potatoes which she got so excited about. She is a huge fan of sweet potatoes and ended up wearing more than she ate. We are looking forward to slowly introducing her to other foods over the next few months.

On March 10th, we took Kayla to Shriners Children’s Hospital for a visit with her Muscular Dystrophy doctor. They evaluated her feet and were a little concerned that her ‘foot drop’ might not be improving as quickly as they would have liked so they recommended putting Kayla in serial casts for a few weeks to speed up the process. Kayla got bright pink plaster casts on both feet which she is tolerating really well. However, after we left the hospital after having them put on for the first time, we had to return within an hour because Kayla had worked one of her feet completely out of the cast. She is so strong! The doctors re-casted her feet and used a type of glue to keep her from pulling them out again. So far she has tolerated them really well.

On March 12th Kayla was weaned off of her feeding tube as a trial. She has continued to gain weight since then so she is now officially weaned from tube feedings as of today. She now completely gets her nutrition from nursing and solid foods. This is such an amazing milestone for her since I remember the doctors telling us in the beginning that they weren’t sure that Kayla would ever eat by mouth. I love when she proves the doctors wrong.

On March 15th, Kayla's Pulmonologist allowed us to start using a Passy-Muir valve (PMV) over Kayla's trach when she is off of the ventilator. This is a one-way valve that allows her to breath in through her trach but when she exhales, the air is blocked in the trach and is pushed out through her mouth passing by her vocal cords. When Kayla is wearing her PMV she is able to coo and make all kinds of sweet noises. She seems to really enjoy hearing her voice so we are hoping that over time she will tolerate it well so she can wear it more often. For now we are able to use it just 15 minutes at a time, up to 4 hours a day. Unfortunately, last Saturday, March 18th, Kayla got sick. We had to discontinue her PMV use and she was put on antibiotics. It was a little scary at first because with a trach she is unable to handle her own secretions so we have to help her by suctioning her trach a lot. She is starting to recover a little now so we are hoping she is through the worst of it. We are very lucky that she has gotten so strong over the last few months because she is now able to fight off a cold much better.

Jeff and I are hanging in there and are trying to figure out how to do our part in helping to find a cure for MMD. We have decided to take part in the first Annual National Myotonic Muscular Dystrophy Fundraiser and are now co-chairs of the event. It will be an email/mail campaign so I’m sure that you will all be hearing from us soon.

Thank you so much for hanging in with us through the last eight months. It has been such a challenging time but we couldn’t have made it through without all of your support. Now that we are settled into a routine at home, we would love to get back in touch with everyone so feel free to give us a call when you have time.

All the best,

Lisa