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
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