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 25th 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 5th, we lost another dear friend to Myotonic Dystrophy; Kayla’s disease. Suzy Glick was only months away from her 50th 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 9th, 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 9th, 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.
aka: Baby Kayla’s Mom