Kayla's Story on the MDA Jerry Lewis Telethon

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

To My Fellow Special Needs Moms

I am in the middle of writing another update but first I wanted to share something that a friend of mine with a daughter and granddaughter with myotonic dystrophy sent to me. It's in honor of all mothers with kids with special needs. You may want to grab some tissue. :)


To You, My Sisters
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

By Maureen K. Higgins

Kayla Got Her Trach Out!

So much has happened since our last update on April 25. Life has been unbelievably crazy over the last few weeks. One of my close friends came to me the other day and said “you seem to have had more going on in the last month than most people have to deal with in a year”. I have to agree with that assessment. I won’t bore you with all of the details but it’s been a pretty rough month. Jeff and I are both so tired from everything we’ve been through and then on top of everything, I took on a new job. I am back with eBay again working for an eBay company called ProStores. For those of you wondering, “No, I’m not commuting to San Jose”. I work out of the Folsom office, about 15 miles from our home and then a few days a week I work from home. Well, finally things are beginning to settle down a bit.

One of the life events that have affected us recently is the loss of our friend’s baby. As most of you know, Trevor Austin Kott lost his 6 ½ month battle with leukemia on April 25^th and we have been filled with such deep sadness for the Kott family since that time. My heart feels like it’s breaking so I can only imagine what Trevor’s parents, Bob and Angela, and his sisters, Kendall and Lauren must be feeling. I know that they were so touched by the outpouring of love and generosity from so many people; including so many strangers who came out in droves to support them and get tested to be potential bone marrow donors. The marrow drives in Trevor’s honor are continuing. If you would like to be tested (all it takes is a simple cheek swab and $52 for the lab fee), please go to Trevor’s website: www.trevorkott.com and find out how you can get tested. Trevor Austin Kott was laid to rest on May 6, 2007. His memorial celebration was so incredibly touching. News 10 in Sacramento did a wonderful story the day of his service: http://www.news10.net/video/player_news10.aspx?aid=39341&bw=http://www.news10.net/video/player_news10.aspx?aid=39341&bw=4/26

On May 5^th, we lost another dear friend to Myotonic Dystrophy; Kayla’s disease. Suzy Glick was only months away from her 50^th birthday when she died from complications after a fall on a recent vacation to Florida. Unfortunately, due to her disease, she was unable to recover from her injuries. Suzy is survived by her husband and dear friend of ours, Corey and her son Kevin (who also has congenital Myotonic Dystrophy and is now 22 years old). Her loss keeps us focused on trying to help researchers to get funding so they can continue their important work on this disease. One day, hopefully, we can all look back and see this disease as a distant memory. I believe with all of my heart that a cure will be found in the near future.

Kayla has been continuing to progress nicely over the last month. Although I try and stay positive regarding her progress, I can’t help but find myself researching late at night when I can't sleep, and quickly being reminded that she isn’t out of the woods. To quote a recent article,

Researcher Studying Disease that Cripples Newborns

“Congenital myotonic dystrophy (CDM) is by far the severest form of DM. Because infants lack muscle tone, afflicted newborns are floppy like rag dolls. Typically, they suffer from poor sucking and swallowing responses, respiratory ailments and impaired motor development. Twenty-five percent of them die within a month. The outlook for those who survive is bleak – they become increasingly weak and disabled and suffer from mental retardation.” What does “bleak” really look like? Kayla has been called a miracle by her doctors so what does that really mean for her? I wish somehow that I could take a view into the future. Sometimes, I wonder if we’ll find a cure in time for her. What would that cure look like? Can her progressive symptoms be reversed? I try not to dwell on this topic too much but I can’t help but let my mind wander sometimes. For now, I know that I just need to continue enjoying Kayla’s progress and continue living day by day.

Speaking of living day by day, Kayla has hit yet another amazing milestone. On May 9^th, two days before my birthday, Kayla went to the hospital for a procedure to remove her tracheostomy tube. First, the surgeon removed a large granuloma (scar tissue) from the inside of her trachea. This happens due to having a foreign object in your body for too long. Kayla came out of the surgery with her trach tube in place to give her time to recover from the anesthesia and then after a few hours, we were able to remove the trach tube ourselves. The surgery went well although it was a little traumatic suctioning blood out of her lungs for the first few hours in recovery. By the late afternoon on the 9^th, Kayla was breathing for the first time without the assistance of an intubation tube, mechanical ventilator or trach tube. It was a pretty emotional moment for all of us. Her nurse, David, came by to help us celebrate this milestone and witness Kayla’s trach removal. We shed lots of tears and passed around hugs to everyone, even strangers walking by in the recovery room. :) Kayla was monitored over night in the hospital and after having to be on oxygen for the first few nights, Kayla is now tolerating the trach removal very well and seems so relieved to have it out.

One thing that I noticed after about a week as the trach hole has started to close, is that Kayla makes all kinds of cute cuddly baby sounds at night. This isn’t something we have experienced up until now because with the trach and no speaking valve at night, Kayla wasn’t able to vocalize. Now, sometimes at night I lay there and listen to her grunting and babbling and it helps to take the sting out of all we have been through over the last couple of years. Kayla is still sleeping with us but now that her trach is out, we are hoping to move her to her crib slowly. I'm sure this transition will be difficult since she's slept with us for most of her life due to her medical condition.

We had an amazing Mother's Day with Kayla. It's the first time we took her out of the house without having to carry machines (like her suction or pulse oxymeter) around. We took her to the mall and only carried a few diapers with us. I can't begin to tell you the feeling of freedom that I had that day, not having to think about what we were taking and if everything was sterile. It takes such a weight off of us, I just can't begin to explain how much it changes things. Kayla is just a regular old kid now with just a little residual weakness. I feel like typical mom not a medical mom for the first time since Kayla was born. What an amazing Mother's Day gift.

On another positive not, Kayla is starting to communicate more and more each day and now knows up to at least 35 baby signs now and is saying 15 words although her receptive language is much greater than that. Her new signs are fish, sock, book, and open. Her new words are moon, turtle, papa (my father), and ball. Again, I’m sure I’m missing a few but I can’t keep track of everything. Kayla really seems to understand so much of what we say. It really makes me wonder how much she’ll be affected by her disease mentally. I continue to hope for the best and keep up with her therapies. Actually, Jeff is now switching roles with me for a while so he can be home to enjoy Kayla for a while. He is doing her therapies and taking her to her doctor’s appointments so that I can focus on my job. He seems to really enjoy finally having some quality time with her and since he’s been home, she is turning into a daddy’s girl. She even rejected me the other day when I got home from work. It really broke my heart but I was happy to see her building a relationship with Jeff.

Also, we have found a nanny that is moving out from Boston to Rocklin and is perfect to work with Kayla. She comes with amazing references and we are very excited to have her work with our family. Unfortunately, she isn’t available until late August so we are working on a transition plan right now since our nursing coverage will slowly be discontinued due to Kayla’s progress. We have worked so incredibly hard over the last 22 months to get Kayla to this point but sometimes we realize that with that progress, each day, nursing will be reduced. David, Kayla’s nurse always says “it seems so strange to be working towards a goal that you don’t want”. He has helped so much with Kayla’s therapies over the last year and a half and we couldn’t have gotten her this far with his help and that includes all of the other nurses assigned to Kayla’s case. David and Kayla have become especially attached though so it’s going to be a hard transition for all of us when he has to leave our family.

Over the weekend last week, we stopped by a party that was held by Kayla’s nursing agency for nurse appreciation week. We were able to catch up with all of Kayla’s former nurses and show off the new and improved Kayla to everyone. Many of them hadn’t seen Kayla in over a year so once again, we shed lots of tears of joy and they marveled over Kayla’s accomplishments. Those are such sweet moments that I will treasure forever.

Well, it’s late and I’m tired and need to get to bed. I’ll write more later.

Lisa

aka: Baby Kayla’s Mom

Trevor Lost His Battle with Leukemia - Say a Prayer for the Kott Family

Today we are filled with great sadness for our friends Angela and Bob Kott whose baby Trevor, lost his battle with leukemia this morning. www.trevorkott.com It has been a very emotional day but I wanted to take a quick moment to share that news with you as so many of you have asked how you can help.

This morning we took Kayla to the hospital for her trach removal surgery but it ended up getting postponed for a few weeks. Last night she had a difficult night and needed oxygen again all night so we are giving her a few more weeks to rest before moving forward with the surgery. We feel very good about this decision as it gives Kayla the best chance for success.

I have a new video of Kayla that you should take a look at when you have time. www.youtube.com/watch?v=VxUstZ6DsnM It's so cute.

More later........

Lisa

Kayla is Getting Stronger: No More Feeding Tube

I can’t believe how long it’s been since I’ve updated Kayla’s webpage. We have been so unbelievably busy but mostly with positive things so I just haven’t had a moment to get back to journaling. How did 4 months fly by?

I decided that today was a great day to update the journal because we have great news to share with you. I’ll start with an update of how Kayla is doing and get to the best news at the end of this posting. Now be patient and don't read ahead!

The last time we wrote was over the Christmas holiday so we have a lot of catching up to do. We had an amazing New Year’s night with Kayla. Jeff bought us a bunch of 2007 party supplies and we spent the night in with Kayla and celebrated the New Year and had a small party. We dressed Kayla up in a hat and 2007 glasses and she loved it.

On January 11, 2007, we took Kayla to see her muscular dystrophy doctor at UC Davis. The doctor was so shocked to see Kayla and how strong she’s gotten. These are the kind of doctor’s visits that I love. I just love seeing the look of surprise on their faces when they see how well she’s doing. Kayla is such a miracle!

On January 24, we were invited to Easter Seals to be filmed as a part of a new promotional film they are putting together. Kayla was an absolute star and was up walking in her walker during the filming. For those of you who don’t know, Kayla is the Youth Ambassador for Easter Seals of Northern California (the Sacramento region). We were invited to a dinner a few weeks ago where Kayla was honored and the video was aired for the first time. Kayla was such a superstar and it warmed my heart to see her there representing such an amazing organization. Every time the audience clapped, Kayla clapped along with them and then as we were giving out awards to some of the attendee's Kayla would sign, thank you to them. She was quite a hit that night. I spoke at the event to over 300 people and of course I couldn’t stop crying (tears of joy, of course), thinking back to everything Kayla has been through in the last 20 months. Kayla has come so far and we owe so much of that to Easter Seals and their amazing physical and speech therapists.

In January, Kayla started learning how to brush her hair. She doesn’t get it very straight but is endlessly entertained by attempting to brush it. It’s very cute!

On February 9th, I was asked to join the Executive Committee for our local Muscular Dystrophy office in Sacramento. I was very honored and glad that Kayla can help represent Myotonic Dystrophy for the MDA. Kayla was also asked to be the poster girl for the Sacramento Lock-up Fundraisers for this year. Of course, we accepted. Kayla’s picture and story has already been on one postcard and one folder. She is getting very famous in our area so you may want to get her autograph now while you still have access to her. j/k I always laugh because she’s done more in her 20 months on this planet then I’ve done in 40 years. Kind of scary!

On February 6th, we took Kayla back to her cardiologist who gave her a clean bill of health. Kayla had previously had a small hole in her heart called a VSD but it has closed on its own and her heart rhythms are normal now. What a relief!

Kayla got sick again on Super Bowl Sunday and had to go back on Oxygen. It seems like she needs oxygen every time she gets sick now. It’s kind of a pain to carry around an oxygen tank everywhere but after having a ventilator, oxygen seems easy.

In the last few months, Kayla has started to make a lot of new sounds. She has added the words, cat, dog, bubbles and Nana (my mom) to her vocabulary. That brings her up to 9 spoken words. Kayla has picked up so many new baby signs in the last few months, I think I’ve lost track. Her new signs are: David (her day nurse), bird, thank you, hurt, mom, dad, baby, time, shoes, hat, please, sorry, and ball. I think that brings her to 25 signs so far but I’m probably missing a few. Since her spoken language is slow to come in, the signs have really saved us. It’s been fun learning signs with her and you can just see how proud she is when she is communicating with you. For anyone wanting to teach their child baby signing, we found the best videos called “Baby Signing Times” that teaches her signs but is also really entertaining. She could watch those videos for hours.

Kayla has really gotten good at using her new walker. She cruises all over the house in it and can get from point to point pretty effectively, although our walls are getting a little banged up. When she goes down the hall, she goes from side to side and hits the walls as she’s trying to right her walker. It’s pretty amazing to see her upright and cruising around on her own. We are working on transitions now so that she can get up into her walker on her own. She is pretty good at getting up into it but we are still working on getting out of it gracefully. Kayla has started crawling up the stairs on her own now too. She is getting faster every day but it terrifies me to let her go up without being right there with her. As she starts to get better balance, I’m sure it will get easier for me to just let her go. (I think) I have posted some videos on You Tube of Kayla in her walker. Feel free to take a look when you have time: http://www.youtube.com/profile?user=BabyKaylasMom

Well, here is where the great news starts. Kayla had an appointment with her gastroenterologist on March 14 and after reviewing Kayla’s weight gain and growth over the last year, Dr. Yinka Davies (an angel from Heaven) gave us the go ahead to take Kayla’s feeding tube (aka: g-tube) out permanently. We all cried, including Kayla who probably thought we were taking a part of her body away since that is all she has ever known in her lifetime. Dr. Davies emphasized to us what a miracle Kayla is and how amazed she has been in her progress. She said that when Kayla first had her g-tube placed that her chart was marked as “G-tube dependent” meaning that she was expected to be fed by g-tube for life. For Kayla to have weaned off of the g-tube so quickly (within 7 months) and then maintain her growth over the last year is absolutely miraculous. Kayla is still off of most growth charts if you look at her weight or height individually but for her height and weight together she is in the 50th percentile. Absolutely perfect! That’s my angel! She also hit the 3 foot mark recently. I think she’s going to be taller than Jeff and me. Yikes! We are really hoping to get Kayla walking on her own soon too because she now weighs 31 lbs and is getting pretty heavy to carry all of the time.

On April 4th, Kayla went to the Sutter Sleep Lab for an overnight sleep study to see how she would tolerate having her tracheostomy tube plugged up. It was a difficult night because they wanted her in her own crib but she’s used to sleeping with Jeff and me so she wasn’t too happy about it. She has slept with us since we stopped having night nursing so that we can suction her trach at night as needed. It’s going to be a very difficult transition (probably for both of us) to move her to her own bed someday when her trach is out. Well, all in all, Kayla did well that night and we have gotten the go ahead to have a surgical procedure called a bronchoscopy done to have her trach site evaluated for a possible trach removal. If all goes well in the surgery, Kayla will have her trach removed and then have some minor surgery to repair any granulation tissue that has built up due to having a foreign object in her for so long. Then they will suture her stoma (hole where the trach is inserted) up and watch her in the Pediatric ICU (our home away from home) for a few days. Right after we got the news that we could proceed with the surgery, Kayla and our entire family got sick again with a bad case of bronchitis. We have all been fighting this off for a few weeks but are now on the surgery schedule again for April 25th. What a miracle if she gets her trach out so early. The doctors told us that she would likely have the trach for many years when it was put in in September of 2005. Once again, Kayla has proven her doctors wrong. This is becoming her favorite past time.

One last thing, I recently decided to go back to work and will be starting work with eBay again (working in Sacramento this time). I will be the product manager for a product called ProStores. Check it out if you are interested: www.prostores.com I'm really excited about this opportunity and love the team that I'll be working with.

Well, I’m sure that I could keep writing on and on about all of the wonderful things that have happened over the last 4 months but I’m tired and need to get to bed.

Thanks for keeping up with Kayla and for continuing to send your thoughts and prayers to our family.

Speaking of thoughts and prayers, please say a few for our friend’s baby, Trevor Kott, who is starting his 6th round of chemotherapy at only 6 months old. His leukemia went into remission after the first round of chemo but now it’s back and resistant to the latest chemotherapy drugs. Trevor’s only hope is a bone marrow transplant and right now, there isn’t a match for him in the International Bone Marrow Registry. If you have it in your heart, please go get a cheek swab to see if you could be a match for him. You can do this at your local blood bank or find a marrow center near you by going to Trevor’s website for more information. I put together this website for him to try and consolidate efforts to save him in one place on the web. There are many marrow drives in the Sacramento area so please go get swabbed if you can. The Sacramento media have been airing stories on him every night. He has touched so many lives and now over 1000 new people have registered for the marrow registry to try and save him. That in itself is a miracle. Since March 15th, the doctors have only given Trevor 6-8 weeks to live. He needs your help! His website is: www.trevorkott.com

Thank you again for all of your love and support over the last two years.

Love,

Lisa