A Rough Week

This past week began with the news that my grandmother was quickly fading after a probable stroke the prior Saturday. I was planning on seeing her Tuesday after work but unfortunately I did not make it, as she passed away around 2:15 that afternoon. She was blessed to have her three children standing by her bed reading scripture and I like to think that brought her enormous peace. We had the visitation and funeral in Crossville, TN where she lived most of her life. Stories were told of her raising her children and I felt saddened that I did not know that woman back then. Alzheimer's had changed her into a different person as it always does and I found myself intrigued by the woman that she had been years before. I have a feeling that me and her probably would have had a lot in common. I will truly miss her, but I am thankful she is at peace with the Lord now.

Sunday, I decided to take a walk with Kendal to the playground near our house for some mommy and Kendal time. It was beautiful outside with a nice breeze constantly blowing through. Kendal played hard and both me and her were beat by the time we got home.

Kendal got a very high fever later that evening after getting back from the park. I was quite concerned because she was still on antibiotics from her ear infections last week. I had to take her to the cardiologist this morning (just a checkup on her heart murmur - the doctor released her), and then I called the pediatrician to ask them if I should be doing anything else for Kendal because I though she had a fever from the heat at the park. They told me to go ahead and bring her in and I'm so glad I did. Kendal tested positive for Strep Throat and Mono. Let me repeat - Strep Throat AND Mono. I couldn't believe it. It seems Kendal stays sick constantly and as a good friend reminded me today, Kendal still puts EVERYTHING in her mouth so no wonder she picks up everything going around. So now we are discontinuing one antibiotic and starting a new one. This kid sure is a trooper.

IEP - Not So Scary

This past week, we had our initial IEP for Kendal regarding her entrance into the Special Education PreSchool Program. I had previously met with her teacher, toured the classroom, and went over the daily schedule of activities and I was very impressed with what I saw. The people in attendance were me, James, Nana, Speech Therapist, Special Education Teacher, School District Psychologist, and the Vice Principle of the school she will be attending. Everyone was very nice and prepared (totally shocking!), and by the completion of the meeting I felt very confidant that this was going to be a beneficial program for Kendal.

I felt like all the members of the meeting really understood any concerns that I brought up and they had the IEP mostly completed from information that I had already provided. We went over Kendal's last Speech Evaluation (completed 3-2009) and that was hard to hear out loud. Kendal is at an overall level of a 13 month old. It still surprises me sometimes that I can become emotional over something that I feel like I've already dealt with.

The Speech Therapist that attended the meeting and another Special Education Aide in the school is good friends with my parents. Plus one of the aides in Kendal's classroom said she heard all about Kendal because her husband works with James. It is neat to have several people "looking out" for her in a sense. Kendal will probably start the program sometime this week.

She will attend this program on Mondays, Tuesdays, Thursdays, and Fridays between the hours of 11-2. There will be a total of 6 children in the classroom (one of those being a typical developing child), and one teacher and 2 aides. The teacher described that they have centers set up much like a typical preschool however they are led by the teacher. For instance, there are 3 centers, one each being led by a teacher/aid and there will be two students at each center. I was really impressed with the different activities that they engage the child in and also the ratio of teachers to students.

They will focus on such things as colors, shapes, self-feeding, self recognition, and other basic skills that Kendal struggles with. I think this is very beneficial because in her current preschool class I doubt it is covered much because most of the other children have these skills down pat. She will still attend her regular preschool but I will pull her out those 4 days a week for the special education program. It will take getting used to, but overall I'm excited about the program and look forward to seeing improvments in Kendal's skills.

Have You Ever Heard An Angel Laugh?

This video was taken the other night after dinner. Her daddy did something silly and she got cranked up. What is even more funny is her watching this video. She laughs and squeals right along with herself. She really thinks she's something else!

In the News

Terry Jo Bichell is a visiting scholar at Vanderbilt and was one of the first people we contacted concerning Kendal's diagnosis. She currently focuses her energy on researching AS and has developed a education system called Alphabet Therapy (http://www.alphabettherapy.com/) to help AS kids learn the alphabet.

Please view the following article that was written in our local paper to increase awareness of Angelman Syndrome and the upcoming Walk-A-Thon.

http://www.tennessean.com/article/20090406/MICRO020701/904080350/1553

Happy Easter!

I don't think today could have been any more beautiful than what it was. I went to a great service at church and then met up with my dad and stepmom to join the rest of our family for Easter Dinner and an Easter Egg Hunt. Although Kendal was tired and I was frustrated by the time we got home, it was truly great to get together with family that we don't see often enough. It made me that much more thankful for the lives that we have. I am blessed to have a wonderful family.

For whose that don't know exactly where we live, our area experienced a couple of tornadoes on Friday and many people lost the belongs, homes, and a few even lost their lives. It was absolutely horrific and I ask that you keep these people in your prayers. One of the tornadoes destroyed a couple of homes about 3-4 miles from us. That close, and yet we had no damage. Praise God.

AS Walk-A-Thon Coming Soon!

I am so excited the Angelman Syndrome Walk-A-Thon is here again on May 16th. We had a great time last year and we were blessed to have so many of our family and friends show up to support us. We again hope to have a big crowd for "Team Kendal" and I'm even thinking of making some shirts for all that register for the walk.

I have already set up the Fundraising Page so please check it out at http://www.angelman.org/teamkendal/. I have huge expectations but I know we can reach our goal again this year. Please pass around this link to family and friends so we can ensure another successful year of fundraising.

GO TEAM KENDAL!!!

Also, for all those that donated last year, the Angelman Syndrome Foundation has published a newletter regarding the success of the 2008 Walk-A-Thon. All people that donated should have their names listed. Please check it out - http://www.angelman.org/media/files/2008%20Walk%20Newsletter.pdf.

Slacker

To those who read this blog, I apologize for taking so long to do an update. Kendal hasn't been in therapy for 1 month now, and I am growing more and more lazy by the day. I truly didn't realize how much time and energy I spent thinking about what time I had to get up every morning to have me and her ready on time or the time I just spent observing her while she worked with the therapists. Still, every night I say, "Ok, what's tomorrow?" - trying to prepare for her therapy when she doesn't even have it anymore. It has been nice though getting more sleep and becoming a little lazy. I guess over the last two years the routine finally set in and now I find myself being a little more selfish with things I want to do. I keep thinking, "So this is what normal family life is like."

I have been trying to be patient with the school system in getting Kendal evaluated for services. During spring break, I had sent probably 30 pages of documents on Kendal (evaluations, IFSP, doctors recommendations) to the administrator at the school system. He contacted me last week and said the speech evaluator would give me a call this week to set up a time to see Kendal and that he had forwarded her all the needed documents. I waited until today before calling her myself. I left a message and of course did not get a phone call back. I will wait till Monday and then I will really start calling. For any parents dealing with issues like these, I have learned from experience that I have to stay on top of everything all the time or months will go by with nothing happening. It used to infuriate me that people did not return calls or get back with me in a timely manner, but I know that the squeaky wheel gets the oil and I will be that person if need be.

The interest in what the school system may offer Kendal is due to the fact that our insurance company has so far only agreed to cover 2 therapy sessions a month. We plan on supplementing whatever speech therapy they offer with some private sessions which can be very costly. Once we sit down with the school system and see our options we will know more of what we want to do as far as therapies go. I am hoping they will also provide occupational therapy and a behaviorist to deal with some ongoing issues.

This past week Kendal has been sick. Sunday she woke up with a fever and it hung around 103 all day. After taking her to the doctor on Monday, I discovered she had an ear infection, swollen tonsils, and a sinus infection. Because Kendal is usually so good tempered, I had not noticed any signs until Saturday afternoon when she got a little fussy. Even then, I dismissed it because we spent a couple of hours in the car and I assumed she was just bored. She stayed with Nana on Tuesday and Wednesday I put her back in daycare. Wednesday at lunch the daycare called to tell me that she had vomited a couple times and I needed to come get her. She did not vomit at all (of course) when I had her that afternoon and evening. She went back to daycare today and I think she is back on track. All the kids ran up to her this morning to give her a hug. There are a set of twin girls in her classroom and they totally adore Kendal. The teachers have told me that they take turns following her around and are very protective of her. When I left her this morning, she was walking around with one of the twins following behind her. Too sweet!