Friday, April 20, 2007

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:

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: 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:

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



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