November, really????

I don't know where the time has gone. Days seem to keep passing by without the slightest hint of slowing down. This has been a very busy summer and fall for us. Kendal is doing great right now. I had talked about Kendal's behavior issues that were becoming major issues for us, but she has recently seemed to have been doing better. Kids are not automatically protecting themselves when Kendal walks up, and that is always a good thing! The school system has been using a two button communication device and it apparently is helping at school. The teacher sent a note home today that someone had brought in an "Easy Button" from Staples, and Kendal is willingly working hard so she can play with it. That made me crack up!

We have also been trying to work on Estate Planning for Kendal and it is such a large task to undergo. Everything from putting fact books together of Kendal's medical doctors, her wants, and likes and dislikes to hiring an attorney to put everything together - it's a big job. We subscribed to Protected Tomorrows (http://www.protectedtomorrows.com/) as it provides a step-by-stop process to help us with these issues. If only I could hire someone to do it all for me! Just finding the time to get these things handled becomes a very hard issue.

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Halloween was so fun this year! Kendal had a princess outfit that she had received as a hand-me-down from her cousins, but it was a little too tight and the fabric was irritating to Kendal's skin. We purchased Kendal a Cheerleading outfit (mainly because it was one of the few things that didn't require a hat or something else on her head, which Kendal hates). She very quickly understood the concept of walking up to doors and getting candy. So beware ---if Kendal walks up to your door, she is probably expecting candy and she can throw a fit with the best of them.

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Hope everyone enjoys the pictures. She is becoming such a big girl!

Please keep the faith with me on these posts - I will try to do better!

My Kendal

This summer has flown by and I haven't been able to accomplish much. I find that time is passing at a dizzy rate and I wish it would slow down so I could enjoy these years of discovery with Kendal. She is progressing well but there are always battles on the horizon and we continue on with our work.

We have been dealing with alot of behavior issues due to Kendal's lack of communication skills. She hits, and now pinches, to get what she wants - whether it's attention, to greet someone, to illustrate her protest of something. My hearts hurts for her that she can't express herself. She is watching all those around her talk and yet she remains silent. I am still trying to figure out God's plan for her. I worry about her future - whether she will have friends like I do even when she can't talk. I wonder if she'll fall in love one day. I wonder....I wonder.....I wonder.



We continue with therapies and with school and I can see that she gets tired of it all. Most kids don't have to deal with all the things I throw at her. I can only pray that we are doing the right things. After having another consultation with our behaviorist, we have realized that Kendal really needs more one-on-one attention to deal with the behavior effectively. Currently she is in a preschool with 18 children in her class. The teachers cannot keep an eye on Kendal the whole time understandably and alot of bad behavior is not able to be dealt with immediately. Kendal really needs a "shadow" at this time to continually correct and guide Kendal to learn proper behavior with her peers and adults. Not only that, we see that Kendal doesn't know how to play with toys appropriately and she gets frustrated easily when she struggles to accomplish tasks. A "shadow" would help initiate play with peers and act as a buffer between Kendal and others until she learns a better way to communicate.

We have requested another IEP meeting to try to get the private and school provided therapists on the same page. In addition, the school is suggesting possible assistive technology to see if Kendal responds to a communication devise - probably something like the one in the following link (http://store.mayer-johnson.com/us/gotalk-4.html). We are asking the behaviorist to join us in the IEP meeting both to support us and also suggest different behavior techniques with the teachers that might help Kendal. I pray that we are on the right track and things get better.

As many of you know, we recently moved into an apartment until we decide to buy another house or build again (we want to build again!) and we are on the third floor. Kendal has decided that she does not like the steps and refuses to go up the stairs on her own. So what does that mean? I have to carry her (all 40lbs of her) up 3 flights of stairs along with her backpack, my purse, papers, and everything else I carry on a daily basis. By the time I get upstairs, I'm exhausted, burnt out, and ready to cry. On the bright side, we did get a permanent handicap parking tag to help when we will need to use Kendal's new stroller (she gets fitted for it this week!). I know this issue will probably be short lived or that's what I keep telling myself. Other problems emerge, and older problems seem to get better.

Please continue to pray for us.

Doing Homework!

My little girl....

So Lazy

I'm not sure why, but I have been so lazy about keeping track with my blog lately. It seems to really take me time to decide what I want to write about and how to word it. At this point it is probably more helpful to me than anyone else because it offers me the opportunity to vent on the latest things going on in our lives. If it proves beneficial to someone else than that is just an extra treat.

Behavior has gotten to be a much bigger problem in the last couple of weeks. It seems to go in stages where Kendal will do good for a week or two and then she gets back in her slum of hitting and throwing. It is very frustrating because I have mixed emotions on it. I first and foremost am sympathetic to what Kendal is going through. I can't image going even one day of my life without having the ability to speak to people around me. I can't imagine how frustrated, angry, and without hope she must sometimes feel because of her disconnect. I hate that she can't output what her wants and needs are in a language that is known by all those around her.

Nevertheless, it is extremely upsetting dealing with bad behavior as a result of her trying to communicate, trying to control her environment, or learning how to test all her boundaries. For the last two weeks, Kendal has been in Time Out in the school program (3 hrs long) at least 2 times each day and as high as 5 times in one day for throwing and hitting. Hitting because teachers and therapists are asking her to work and she doesn't want to. Throwing things when she isn't getting her way or doesn't like what is being asked of her. Most kids this age would be screaming, "NO NO NO!!!" Hitting and throwing would seem to be a normal reaction and I understand that but she also needs to learn there are other ways to deal with situations she may not like.

I also further understand that much more is demanded of Kendal than most of her peers. Currently, she has 8 therapy sessions a week and I know that is a busy schedule for a three year old child. I also know that I want Kendal to be aware that it is okay that she may have to work harder at some things than her friends. I was always raised to work hard and I expect the same from Kendal despite some of her obstacles. We all must work to improve ourselves and I want Kendal to have every option available to better improve her chances of living a happy and independent life.

Unfortunately insurance doesn't not cover a Behaviorist to work with us, so all appointments are out of pocket ($100/hr). We again see the Behaviorist on Thursday this week and hope she can give us additional tools to help the behaviors. Angelman Syndrome is very different in the way alot of behaviors are dealt with. Most children are trainable through certain discipline techniques and what motivates them. Kendal is much harder (in my opinion) because most disciplines (time-out, spanking, ignoring, taking away things) does not affect her. In addition, she is very hard to motivate. She doesn't have a favorite toy, she is not particular on any one thing. If you try to motivate her by giving her a special toy and then you take it away because of a bad behavior, she's perfectly fine with that. She won't get upset because she didn't care that much about the toy anyway. A visual example is when she refuses to walk. She, like most kids her age, will fall on the ground crying because they don't want to go somewhere. The parent will walk away saying, "Mommy's leaving. Bye-bye!" and then the kid will jump up and run after mommy. Totally different with Kendal. She will fall down on the ground refusing to walk and I will walk away saying "come on, mommy's going bye-bye" and she will lay there on the sidewalk happy as a lark. She won't move. She is just as content to sit there and watch the people walking around her. In the meantime, my blood pressure increases!

On a totally different note, the doctor is checking on a stroller for Kendal to see if insurance will help with the cost. She is getting bigger and going to places like the zoo, parks, and museums has gotten more difficult because she is growing out of her stroller and she does not have the endurance to walk around all day. Although she walks well, her gait is noticeable and seems to give her trouble keeping up with others and maintaining her balance well. We are hoping to get some assistance because these strollers can last several years and cost alot of money!

Also, no word back from the doctors with the Sleep Study. I was originally told they would call me in about 2 weeks. That now has transpired into 2 months. I'm sure they are making sure all their data is correct and up-to-date but I am very anxious to hear back from them and learn more about Kendal's sleep issues. Will definitely update as soon as I know something.

In the next couple of days, I promise to continue writing about my experiences at this years Angelman Syndrome Conference. Please stay tuned!

AS News

It's always great to see local news reporting on Angelman Syndrome. The more awareness we spread, the more help we can get to individuals with AS. Please see the link below from a local TV Station.

http://www.wkrn.com/Global/story.asp?S=10817597

Swimming with Nana

I haven't posted any videos in forever, so here's one from our recent vacation. Nana was great to go swimming with Kendal while I got the chance to lay out in the sun with no worries.

Overview of the Conference (Part 1)

For anyone that wanted to know more about what things we learned or experienced at the Angelman Syndrome Conference (thinking of you Paula!), I will be providing my feelings and insights to the highlights of some of the sessions we attended.

First off, it was really neat to see how we families seemed to gravitate to one another. On one of first days there, we went down to the pool and immediately started talking to another family who had a son with AS. Before we knew it we were surrounded by several families all eager to ask one another questions about sleep, therapies, and anything else that came to mind. I think it was definitely the first place I have been where I knew my concerns or feelings wouldn't be brushed off so quickly. For example, a concern about throwing objects so forcefully was not immediately dismissed by someone that doesn't know about AS saying, "Oh, she'll grow out of it!" Instead it was met with different ideas to avoid those issues by other parents that have had the same problems. One parent, told me that her 16 year old still would throw objects continuously which is why her child still drank from a sippy cup.

We attended the "First Timer's Session" and it was a great beginning session for parents that had never attended the conference before. Most parents there were fairly young, like me and James, seeking to learn anything and everything about AS. One of the first exercises we did was to write down one emotion that we were feeling at that particular moment down on a post it note. When we wrote down our word we went and stuck it to the wall. My word was "anxious". At the end of the session, we took the time to walk down the wall to read other peoples emotions. I counted three other "anxious" on the wall. I thought it was a great example to show that even though we sometimes feel alone, there are people out there that are walking in our shoes and know the same feelings or frustrations that we are living through. The main point of the class was to familiarize new participates of the different conference sessions and show us the importance of networking with other families. It started out the conference on a very high note.

James attended a "Just for Dad's" session and I attended a "Just for Mom's" session. James seemed to get a lot of out the session by talking in small groups with other fathers dealing with everything from marital issues to behavioral issues in AS. I enjoyed my session because we just got a chance to talk in an open forum by asking other moms questions. The speakers kept telling us we had the best resources right there - not necessarily the doctors, but all the moms!

Got to close on this now, but my next post will detail out Dr. Calculator's Session on Best Communication Practices, Dr. Oliver's Session on Understanding and Changing Difficult Behaviors, and Dr. Weeber's Session on the Most Recent Research Advancements.

Stay Tuned!

Angelman Syndrome Conference

This year we were able to attend the Angelman Syndrome Conference in Orlando, FL. Much thanks to my parents who were able to travel with us at their own expense. We stayed at the Hilton Resort at Walt Disney World because this was the hotel where the conference was held. We arrived on Monday morning (7-27). It was Kendal's first flight and she did really well. Tuesday we had the opportunity to visit Magic Kingdom with Kendal. She really seemed to enjoy it. She always seemed to have a curious look at all that was going on around her.

Staying in a small hotel room with an extremely hyperactive child is not a good thing, we have learned. We tried to stay out of our room as much as possible because she totally wrecked havoc on everything. From pulling out the mini fridge from the cabinet, to turning the radio alarm on full blast, Kendal was into everything. Me and James received little rest during the week but that is to be expected with Kendal's sleep issues and the fact that she was in a new place. When we would come down for breakfast we would look around to all the other parents who were up most of the night with their angels. No explanations were needed.

Although we attended many classes that were offered as part of the conference; such as: Just for Moms/Just for Dads, Communication Practices, Latest Research Findings, Sleep Issues, Assisted Technology, Benefit Planning, and Behavior Issues - we still found the most important thing to be meeting so many other families/angels that have or are currently walking in our shoes. We of course felt extremely blessed when we saw the magnitude of other children's disabilities compared to Kendal, but we still know that we have our own battles to face. We met so many wonderful people from all over the country and even in Brazil. I am eagerly awaiting some emails from other families and hope to stay in contact with them through the years. Most importantly, it was nice to see people be where we are now and continue to encourage us that things will get better in many ways and our obstacles will change as Kendal grows but no matter what we will be OK.

I really hope we can go to more of these conferences that are held every other year. I know that I have made some lasting friendships and I am so grateful for being able to attend.

We're Still Alive & Kicking

To anyone who may check this blog occasionally, I apologize for taking so long since my last post. Things have been crazier than normal in the last month, but we are all doing great and have been blessed beyond words. First, we finally sold our house. It was on the market for almost a year and we received our first offer which was for the full asking price (pretty rare in this market). We had to be out in 3 weeks so needless to say, we had to pack up the house and find somewhere to move very quickly.

My last post mentioned Kendal's upcoming overnight Sleep Study. I had taken Kendal to Vanderbilt at about 12:00 on a Wednesday and she saw several doctors that are associated with the Research Study. Before, the sleep study began, me and Kendal went to dinner with my aunt Kristy to try to unwind after such a long day. We had a great time visiting her and dreaded going back to start the study. After getting Kendal all wired up, the study began around 9:00pm. It was very upsetting for Kendal to be wrapped up like a mummy and have all these wires hanging off of her. It was really hard to deal with it by myself because I felt helpless. She did however manage to get through the night and we were both happy it was over.

So much has happened in the last several weeks that I hope to make several posts to feel you all in. However, we are leaving in the morning to go to Orlando. We will be participating in the Angelman Syndrome Biannual Conference this year. My parents will also be going with us to help with Kendal while me and James do some sessions. We are so blessed to have this opportunity and so thankful that God has continued to show us his love and grace.

A Good Reminder

Kendal has been doing so well lately, I kept asking myself why I was going to the trouble of completing a 30-day sleep study that will begin tomorrow evening. Tonight, I have been given a good reminder that although Kendal has been doing much better, she still sometimes struggles with her sleep. She has been up for the last 2 hours. She isn't crying, but I can hear her rattling around and occasionally squealing. I have already been in to change her diaper just to make sure she wasn't playing in it (like last night!) and she is her usual happy excited self at 1:00 in the morning.

Tuesday me and Kendal went to Vanderbilt to visit the Geneticist. I think I shocked him because I was in a much better place than I was the last time we saw him. Life has a way of working things out and since we have accepted some of Kendal's limitations and are striving to make things better for her, I am much happier about where we are at. Of course Kendal was acting like a ham for him and he was really happy about her starting the public school program and her therapies.

We then briefly met with a dietitian to discuss Kendal's food intake. Kendal has always been an extremely aggressive eater, much like her mother and father. She is very solid and is in the 93rd percentile for her weight. The dietitian looked at our food log and was good with the variety of things that Kendal was eating, but that she was just eating too much. I totally agree. Kendal will eat everything we put in front of her and we have a hard time deciding how much is enough. We will probably start measuring some of her food just to help us get a visual of how much she should be eating at mealtime. We also switched to skim milk and will make some different choices on her snacks.

We then did some developmental testing. Kendal has had these same tests now a handful of times. Because she had already been there a couple of hours to see the doctor, Kendal got very clingy and did not perform her best. I don't blame her. I was tired, hungry, and aggravated and I'm sure she was too. We finished up at 1:00 and headed to the daycare and me back to work.

This week seems to have been more challenging than most and James has been great to step up to the plate (his favorite expression - no actually he hates it when I say that). He has taken care of dinnertime, bathtime, and getting Kendal ready for bed all this week. Thank you so much James.

Tomorrow will be interesting. We go to Vanderbilt at 1:00 and will stay until 9:00 Friday morning. Please pray that me and Kendal keep our wits about us. I'm sure it will be a very long day.

It's quiet. I think she has finally fallen back a sleep....

Ok Seriously, is it June already?

Ahhhh...summer is here and the craziness continues! We are again changing our schedules due to Kendal's therapies and changes in the school year. Although Kendal was only in the school program for about 5 weeks, she was finally getting comfortable going and was having fun with her new friends. Of course, the school year came to a screeching halt on May 29th and we had an end-of-the-year party for her class. Both me and James were able to be there and meet some of the other parents and sit in during circle time before the kids got to play in the sprinkler outside and jump in the bouncy cage. It was really fun and Kendal had a ball!

Circle Time

Kendal with AnnMarie (her teacher) running through the sprinkler

My Cutie-Pie

Next week will be a little crazy for us. Kendal sees the Geneticist (Marshall Summar) again for her 6-month follow-up appointment. I really like this doctor and he really seemed to understand us and was concerned about our family unit as much as Kendal's diagnosis. Our last visit with him lasted about 2 hours which is pretty unheard of in this day and age. Then on Thursday we go back to Vanderbilt to try to get some things handled on the research study (http://kc.vanderbilt.edu/site/services/studyfinder/show.aspx?id=136) that Kendal is in. We will go in about 3:00 in the afternoon on Thursday and will see the geneticist again, the neurologist, and a sleep specialist. We will stay overnight for the sleep study (which I am totally dreading) and then we should finish up sometime Friday mid-morning. Needless to say, I will be taking off work on Friday because I don't suppose that me or Kendal will get any sleep that night.

The following week (June 22-26) we will get in our new schedule. Resource class on Wednesdays and Fridays from 9-10. Speech Therapy on Wednesday from 8:30-9. Speech Therapy on Thursday from 7:30-8:30. This will go on for a little over a month and then school will start back up on August 3rd.

Speaking of school, I have always been prepared to fight for any services that I felt Kendal might need through the school system. I am surprised however because I have been extremely pleased with what is being offered to her. The last week of school, we had another IEP meeting to discuss the results of her Occupational and Physical Therapy evaluations. To my surprise, Kendal was approved for the 2009-2010 school year to receive: 2-Speech Therapy sessions per week, 2-Occupational Therapy sessions per week, and 1-Physical Therapy session per week, in addition to the 4-days a week of Resource Class. Of course it does not hurt to know people within the school system and we have been blessed to have several people involved in decision making that are close friends of the family.

Despite my constant worry, God always always provides and takes care of us. I don't know how I could ever doubt him.

Couldn't be prouder!

Please view the following link to read about my big sister. She just moved to a new city (only been there 1 week to be exact) because of her husband's recent job transfer. She not only has gotten a new job, but has already been interviewed by her local TV station and has had two write-ups in the local newspaper.

She is extremely well-accomplished and I know she will do great things in her new job.

Congratulations Katie!!!

http://www.jacksonsun.com/apps/pbcs.dll/article?AID=2009906070314
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Memorial Day Weekend 2009

The pictures below are from Memorial Day Weekend this year. Me and Kendal spent three nights and four days with my parents and sister and brother-in-law at Center Hill Lake. We had a such a great time. The only thing that was missing was James. He had to work every day that we were there but we look forward to having him there next year.

Yes, we're still here!!!

Since I started this blog, I don't think I have ever gone this long without doing a post. We are all doing well but May was complete chaos with all the stuff we had going on. Of course, we had the very successful Angelman Syndrome Walk-A-Thon on May 16th. It turned out great because despite the ugly start we had almost 40 people there to support our team. We were surrounded by people that care and love us and it was absolutely wonderful to also get over $2,700 in donations. Thanks everyone for making this such a successful year!!!

Kendal loved walking!

Team Kendal!!!

Go Kendal!


Nana, Kerrie, & Grandpa

Walk-A-Thon or should it be called a "Talk-A-Thon"

Saturday's Angelman Syndrome Walk-A-Thon was AMAZING. We had about 35 people show up to support Kendal. The day started out so ugly, and yet all these people got out of their beds and came down in their "Team Kendal" t-shirts. I was so proud to be surrounded by people that love us - we have truly been blessed to have amazing family and friends. In addition, we had many people that donated to the ASF on behalf of Kendal and we thank you so very much!!!

As usual, I did more talking than anything. I'm not sure why it is a Walk-A-Thon. I think if I were in charge, I would just have some comfortable seating to sit around and socialize. Something I LOVE to do!

We met several people that I have talked to or seen their blogs on their children. I spotted beautiful Carmyn (http://lovebeingamom-paula.blogspot.com/) and was so happy to met Paula, her mother. Paula, please let me know if you end up moving this way - it would be great to get together!!

I was able to trade stories and suggestions to some parents about things that work for Kendal. Again, how blessed are we to have a network of people right here in our area?

Pictures will follow of this great event. Again, thank you to everyone that was able to donate this year!!

Happy Belated Mothers Day!

I'm sorry this is late, but I did want to send out a special post to all the wonderful mothers that are doing such an amazing job raising our kids in this sometimes crazy and bizarre world we live in today. Please keep up the fight to raise moral, caring, and courageous children. They are the future and don't forget they will be taking care of us while we're in the nursing homes. That is truly a scary thought!

With Kendal being my only child, I am used to her silence. Used to the fact that I do not know what "I love you, mom" sounds like from her mouth. And even if I never actually hear her speak it, I know that she loves and appreciates me by telling me in other ways. Sometimes though we just want to hear it.

No matter how discouraged, frustrated, or lost I can sometimes feel when I am trying to do the best for my child, I have to remind myself that God placed this special child with me because he knew I was the perfect mother for her. What an amazing honor!


These are the beautiful flowers my sister sent to me! Thank you Katie, Mike, Marilyn, & Olivia.


This is Kendal running around with my card, not wanting to give it to me.

This is one of my favorite sayings by one of my favorite artists. Please check out her website. I have several of her prints/canvases in Kendal's room.

https://www.maggielindleydesigns.com/index.html

"thank you, mom, for loving me before you ever knew me. thank you for cutting the crusts off my sandwich and driving me everywhere I needed to go. thank you for your precious hands that heal every ache and pain. thank you for being my wisest counsel and my best friend. and thank you for being my heart’s first home. I love you, mom."

Now I Feel Old....

Last weekend my good friend Shirley came over for a visit while her eldest daughter Stacy attended her School Prom close to our house. I was shocked to see Stacy at the door looking absolutely beautiful and looking so grown-up. I was just wondering what happened to the little girl I met 10 years ago. Where does the time go???

Worth Repeating

I'm sure I've posted this before but it is worth repeating. This article is about a researcher that has "cured" Angelman Syndrome in mice, by regulating a specific enzyme in the brain. Wouldn't this be wonderful if they could do this for our children down the road.

http://www.cureangelman.org/news/LongShot.html

To think maybe one day Kendal could talk...that I could know what's going through her head - what an amazing day that would be.

CDC Preschool

Well Kendal is officially in the Special Education Program in the Public School System. She is only three and it is hard to drop her off and leave her with people that I don't know as well as I would like, but I know she is in good hands and the program will really benefit her. It has been a big adjustment for her and we hope she grows to love it. Dropping her off and picking her up has been an issue because she is shuttled around several times a day now. She will be receiving Speech Therapy through the school system and she will also start with a private therapist later this month. Since she fell off of TEIS in March, she is still doing good with making sounds but has regressed on her usage of signs.

It still amazes me how the "normal" kids react to her. They seem to instinctively know that she is different and can't communicate the conventional way. Every morning her friends run to give her hugs and kisses and tell the teachers how sweet she is. Kendal just laughs and squeals, and it's the most beautiful sound I have ever heard.

Just Found it and I love it

I just ran across this picture we took last summer, and I absolutely adore it. It's Kendal with her "Nana". We had been out on the lake all day and we were riding in the boat back to the house. After a hot day, the wind felt so good!

I promise by Wednesday I will update you on Kendal. She had a rough day today and I can't expel any more energy thinking about it. Details to follow.....

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!

A Slower Pace and Lots of Hits

For the last two weeks I have had a semi-normal schedule at a much slower pace than I have grown accustomed to. Kendal hasn't been in therapy for two full weeks and I am surprised at how much more relaxed I have been (I assume because I'm sleeping more). This is the first time in two full years that I haven't been getting Kendal to therapy or waiting for a therapist to come here. It has been nice to not always plan on making therapy such a big part of our lives although I know it will be vital in Kendal's long-term progress.

Since things have been slower, I have been working on Kendal getting services through the Special Education Program in the school system. I have completed all the paperwork and submitted all of Kendal's most recent evaluations. At this point, I am waiting on her to be evaluated to see if she qualifies for the program (which she will , but we still have to go through the motions). Once in the program, she will participate for 3-4 hours a day, 4 days a week. There she will receive all therapies for which she qualifies for and will work one-on-one with special education teachers. I still don't know all the details but I will give an update as I learn more.

The hitting issues have become more prevalent here at home in the last couple of weeks. We have noticed that at home, she hits mainly because of frustration or anger because we have told her no to something. The other times she does it is when we are holding her or reading to her and her hand swings back and hits us in the face. After reading her a book this evening in the floor, she stood up, turned around and whacked me in the face. I corrected her and she immediately did it again. And again. At this point, I usually have to walk away because I cannot sit there and let her continually hit me (or James) despite that most therapists have advised I ignore the behavior. You get hit in the face time after time and you try to ignore it! We still at this point are working on a tip from the lady that observed her -when she hits, hold her hands down, tell her "No Hitting", and clap her hands together with the instruction for the reason she hit "When you're mad, Clap Kendal". So far this has been very unsuccessful, but it takes a long time to change behavior so we will see.

She's Three!!!

Well, Kendal's third birthday has come and gone and I am realizing that I can't stop time or even slow it down. We had a very small birthday party this year but it was a great one. Both of Kendal's grandparents were there and several other family members/friends which made it very special. On top of that, it was really nice outside that day and all the kids got to play outside.

I had asked everyone for clothes for Kendal since she had gotten so many toys at Christmas and I didn't hardly have any spring-clothes. Usually when you make a special request no one really listens but that wasn't the case this year. Every single present she received was clothes for spring and summer - I couldn't believe it! She now has an entire wardrobe that fills her closet. This is particularly exciting for me because she does go through 3-4 shirts a day (due to the drooling) and 1-2 pants a day. I stay busy just making sure she always has clean clothes for the next day. Kendal wasn't too excited opening all the clothes but I sure was!

Happy Birthday Kendal!

We Love You!

Mommy & Daddy

Saying Goodbye

This past week, me and Kendal had to say goodbye to all the therapists. I have seen most of these women once/week for the last 2 years and have grown quite attached. These women have helped Kendal achieve so many goals and when I lacked faith, they made up for it. I will miss them so much, but I am so thankful to even have had them working with Kendal. We have truly been blessed.

Now, I am currently getting paperwork to the school system to get Kendal set up through their Pre-School Special Education program. That is how she will receive therapies now. Hopefully there won't be too big of a gap between now and when she will actually start with the school system.

Thanks so much Sue (Occuptational Therapist), Amber (Physical Therapist), and Suzanne (Speech Pathologist) for making such a great impact on our lives!

What are you gonna do?

I keep asking myself that as different obstacles keep coming our way in the path of Kendal's progress through therapies. In particular, Kendal has done really well with her speech therapist Suzanne. Kendal adores her and I couldn't be happier with her. Suzanne has been an in-network provider for our insurance so we were just planning on paying our co-pays and any additional sessions out of pocket when Kendal falls off of the TEIS Program on March 10th. Because our insurance has a limit of 2 therapy sessions per 30 days, we had submitted some recommendation letters from Kendal's doctors to see if there was any leeway with the number of sessions per month. We are still awaiting a response.

In the mean time, I receive a letter from the insurance company telling me that Suzanne is no longer an in-network provider and I needed to change therapists to receive the same benefits I had been receiving. I immediately called Suzanne and she is not sure what is going on and she said she would get back with me. Shortly, Suzanne calls back to explain that she did not realize it was my insurance carrier, but they had sent her a new contract in November with a substantial decrease in the amount they would pay her so she did not sign the contract. I totally understand Suzanne's situation. She has worked hard to get to her level and she and her husband have to determine if there are better opportunities elsewhere.

I searched for the providers in my area and there were only 3 in a 100 mile radius of my house. Let me repeat: There are only 3 providers within 100 miles of my house. One is in Bowling Green, one in Nashville, and one in Murfreesboro. I don't even know if any of these providers work with kids. I don't know how flexible they are on schedules (Suzanne lives in the neighborhood behind mine and comes over to our house @ 7AM twice a week).

I started freaking out about all of this, but I caught myself before I went over the deep end. I will not worry about it. God will provide as he ALWAYS does. Things will work out as they should. I am not wasting my valuable time over something that God has the reigns on - and he knows much better than I on how to drive!

A little Dress for Kendal

Well, I decided to get out my sewing machine after my good friend Shirley (http://ourhomesteadingquest.typepad.com/our_homesteading_quest/) told me about a very simple dress to sew that is versatile and adorable too! It's been a couple of years since I have sewed anything so I thought this was a good project to start back in on. It was very simple once I had Shirley walk me through it and I was pleasantly surprised at how good it looked considering the little amount of time that went in to it. These pictures have been taken before I got the chance to finish up the last little stitches, add the two buttons, and iron it but I wanted to at least show Shirley my accomplishment so far. I am already thinking about a second one and Shirley I will want to get your opinion on that one before I start!

What are you doing child?

Kendal's daycare called me Thursday afternoon to let me know that Kendal had begun scratching her belly and they were having a hard time getting her to stop. They had asked if she was having any problems, if she had been scratching before, if I had changed laundry detergents, etc. I really didn't think it was a big deal until they sent me a picture. I about died! I went and picked her up and decided to go to the doctor just in case there was a rash or something. She was so inflamed at the time that the doctor could not tell if there was a rash underneath all the scratching inflammation. We went ahead and coated her with Neosporin and Cortizone and a couple hours later it looked much better (see the above picture). It was one of those times I was asking her, "What are you doing child?" And as usual, Kendal just laughed.

More Sickness, Hitting, and Silly Sounds

After Kendal finished up with the crud, guess who got it next? This past weekend I had gotten very sick and was so disappointed me and James didn't get to go out on the town to celebrate our 10-year anniversary (2-26). Today I think I have finally overcome the bug and now I just pray that James stays healthy.

I have finally got an appointment set up with a behaviorist to come out and observe Kendal at daycare. She will sit in the classroom for 1.5 to 2 hours to observe and then we will have a meeting to help us understand Kendal's hitting issues and give us different tools to use to try to overcome our obstacles. I actually felt really good after speaking with the therapist. Her boss is a specialist that Kendal saw early last year at Vanderbilt. This particular doctor had referred us to the geneticist because she had suspected Angelman Syndrome. I will definitely update once she sits in to observe next Wednesday.

Other than that, things have been pretty normal. I hope to get some video posted in the next week of Kendal's progress in speech therapy. Kendal is making a bunch of sounds now and it is so funny listening to her "talk". She has gotten into the squealing stage now too - she will start crying and then all of the sudden squeal as loud as possible. I know we shouldn't, but me and James crack up. She is so dramatic and absolutely hilarious.

A Sick Day

Today I stayed at home with Kendal because she has been under the weather. Tuesday night was a rough one. Kendal had vomited several times throughout the night which required 4 changes of the sheets and mattress pads, and a trip to the bath tub at midnight. I know I got very little sleep and I know she was completely exhausted too. Wednesday she stayed with Nana Dayton and then spent about 2 hours at the office with me.

She has been running a fever and it got to 103.6 last night. This morning her fever was down to 100.2 and she has been acting fine. She threw up some vanilla pudding I gave her (on the couch that was cleaned 2 weeks ago, Of Course!!), so I will try to let her tummy rest a little and just stick with fluids. I think she will be well enough to go back to school tomorrow as long as the fever stays away.

Kerrie's Sad Attempt to be Martha Stewart

As if I have nothing else to do, I decided to embark on a more extravagant version of a "Valentine's Day Card" this year for Kendal's class. When I decided to do this, I admit I was somewhat disillusioned and possible mentally disturbed.

I got clear little cups and made "to" and "from" labels on each cup along with stickers to decorate. I then filled the cups with candies, stickers, balloons and a lollipop. As I stayed up past my bedtime to finish this the night before Kendal's party, I soon began to realize how deranged I really was. Did I actually believe that 2-3 year olds would appreciate my hard work? Hardly. And then I realized what it really was. I was trying to impress the parents, teachers, etc. I guess I just wanted to show them - Ha ha! I can have obstacles at home, deal with therapies 4 days a week with Kendal, work a full-time job, commute 70 miles a day and still do these extra things for Kendal. But it really wasn't for Kendal, was it?

I wonder if I will ever learn?

Kendal's Upcoming Transition

As many of you know, Kendal is currently receiving all her therapies through TEIS (Tennessee Early Intervention System). Every state has a program for early intervention services for children that are developmentally delayed to help give them a step up in the vital years of birth to 3 years of age. For the most part, the program has worked good and I am thankful to have had Kendal in this program. With her third birthday coming up next month, she will no longer get therapies through TEIS. At 3, children are then transferred into the school system for needed therapies and assistance.

This past Thursday, me and James attended a program to teach us more about the special education department within the school system. It was a 3 hour class and a ton of information was thrown at us in that short amount of time. The program was given by STEP (www.tnstep.org), which is an organization that provides support services to parents of special needs children. We received an inch thick manual of just the federal and state laws that explain our rights of services Kendal is eligible for. They also explained in detail an IEP. I have heard people talk about these, but never really understood what it was all about. I was thankful that we went to the class because it really made us open our eyes at the changes that Kendal will be going through as she navigates through the school system for the next 15 years.

It will be hard to say goodbye to Sue (Occupational Therapist) and Amber (Physical Therapist), both of which have seen Kendal on a weekly basis for the last 2 years. Kendal will continue to see Suzanne (Speech Therapist) but we are still waiting to hear back from the insurance company as to how many visits they will cover. We submitted a note for the Pediatrician and from the Neurologist saying they both highly recommend a minimum of 2 sessions per week. Please pray that our insurance decides to continue to cover Kendal at 100% with no max # of visits. We so desperately need to keep up the momentum.

I want to say thanks again to Dad and Doris for watching Kendal while me and James went to the above mentioned program. Doris picked up Kendal from school and Kendal was so excited she had to show Doris around the room and point out some of her favorite toys. When Doris was telling me this, I could just picture Kendal seeing Nana and squealing and turning around in circles. Doris and Dad brought Kendal home, fed her, played with her, and put her to sleep. I was so happy about it because I know Kendal was excited to spend the evening with them. Thanks again!!

2009 - Flying By

I can't believe it is already the last day of January. I swear it feels like we just celebrated the New Year last week. I apologize to anyone that checks this blog regularly that I have gone over two weeks without doing a post. I wish I could say it was because I was on some exotic vacation and had no Internet access, but it is always better to tell the truth. So the reason I haven't updated this blog...... Because I've been really lazy. When it comes down to it I usually have the choice of sitting on the couch to unwind or making a post. The couch has been winning lately.

Things have been going good on the Kendal front. She is really beginning to pick up some more signs and actually use them at appropriate times. The swinging arms thing has gotten bad in the last week. I was bothered that Kendal did it to our physical therapist (Amber! The BEST!). I have had more than one person tell me that it is probably related to her lack of communication, but I don't see how I am supposed to change this behavior. The communication issue will always be a problem, and we MUST teach her another way of showing frustrations. If you have any ideas, please let me know!

Me and Kendal went to visit Shirley, Mark, and the kids today (http://ourhomesteadingquest.typepad.com/our_homesteading_quest/). I think we haven't seen them in 6 months. We had a great visit as usual. Kendal played so good with the kids and they seemed really excited to have her over. We got to visit their chickens (as seen above) - Kendal wasn't too interested in them, but I was. As much eggs as we eat, I am tempted to get my own chickens! Thanks for having us over Shirley!!

A Nice Gesture

This week has been hard for two reason - it is deathly cold outside and Kendal's a little under the weather. Nothing major, just a snotty nose and alot of drainage. The last two days I have had to completely douse her face with Vaseline. She loves me so much right now!

I got a nice gesture from the neurologist (see last two posts) this afternoon. I had requested his nurse write up a recommendation letter on Kendal's therapies for the insurance company. We are not sure at this point what kind of coverage we will have when she rolls off of the TEIS program. The insurance plan has Maintenance Therapy which calls for a maximum of two therapy sessions within 30 days of Speech, Physical, and Occupational Therapies. Kendal currently receives 16 sessions in 30 days. The doctor said he understood the complications with insurance as he has had to deal with his 18 year old son who has severe autism. He said he would type up the letter this afternoon detailing to the insurance company that the therapies are detrimental to Kendal and her progress. He said he would write it up that it is a necessity at this point to continue current therapies as is to avoid further complications down the road concerning her physical and mental health. He wanted to warn me not to pay any attention to the wording, that it was just to the benefit of the insurance company. He further told me not to hesitate to call him if I needed any help with the school system when I enroll her. I thought he really went out of his way to understand my situation and our needs. This is the doctor I remember from our first visit with him!

I have the night off tonight. After eating dinner, James sent me upstairs to have an evening by myself - to do some reading, make a post on my blog, take a bath, go to bed early, etc. He has gotten in the habit of doing this at least once a week and it is so nice. Thank you so much James!!!

She's ready for the Wheel-Barrel Race!

The last couple of days have been great. James was off this weekend so we got plenty of "family time". Saturday afternoon we dropped Kendal off at my cousin's house and me and James headed out to a movie and dinner. We had such a good time - we even flirted back and forth. We went to a Hibachi grill, which is one of my favorites, and ate like kings. Kendal seemed to have a great time while we were gone and did not seem the least bit concerned that we had left her.

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This morning I got back on the ball with all the things going on with Kendal. She had Speech Therapy this morning, and then when I got to work I registered for a class for me and James to attend. The class is supposed to fully explain the role of special education in the school system, Kendal's rights under the disability act, and what to expect dealing with issues related to Kendal and the school system. It's a 3 hour class and Nana has agreed to come over and watch Kendal for us.

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I also contacted Kendal's pediatrician to request a letter of recommendation for a minimum for twice weekly Speech Therapy sessions. This letter, along with another one I will get from the Neurologist, will be attached to the request for further authorized visits for the medical insurance. There seems to be a limit of therapy sessions authorized per year unless you have a specific medical diagnosis of cerebral palsy, down syndrome, and a few other well-known disorders. The Speech Therapist thought that they might go ahead and approve it with we had some additional recommendations from Kendal's doctors. Please keep this in your prayers!! Kendal has made some amazing advancements with her Speech Therapy and I would hate to slow down her progress.

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I also contacted TEIS and left a message with our Service Coordinator. I called this morning and did not get a return call back today. James noted that Kendal is only 2 months away from getting kicked off the system and that we are probably pretty low on the totem pole - I think he is right. I was calling to express my displeasure over the Behaviorist that was supposed to be helping us. She was to attend Kendal's therapy sessions last week and observe what behavior issues Kendal is having with the therapists and then advise different methods to address certain issues.

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Monday she showed up 20 minutes late with no apology or excuse for her tardiness. I was quite aggravated at this because I do not conduct myself this way, especially professionally. She gave us little to no feedback. She then was supposed to be at Physical Therapy Thursday and she showed up 40 minutes late as I was putting Kendal's shoes and coat on. I was livid to say the least. She then stated she couldn't make the Occupational Therapy session because it was just too early (which I understand, it's at 6:30am on Fridays). She left a message for the Occupational Therapist (who of course played it back for me) stating that she was just calling because the mom wanted her too and if she had any questions to call her back.

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My question is simple: How do you disciple a child that is usually happy?

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Spankings don't work, time-out doesn't work, taking away toys doesn't work.

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She is not your typical child in these ways. I just want some new ideas to try.

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I have decided I don't want the Behaviorist to call me back, and I definitely don't want to work with her. I can already tell you, it would not be a good working relationship. And if anything, Kendal would probably learn some bad behaviors watching me react to the Behaviorist.

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As an update to my last post, I did get an email back from the neurologist. He apologized. I was thankful for that, whether he genuinely meant it or not. It was nice to read it and he seemed to respect my wishes on how often he saw Kendal. I'm glad I emailed him telling him how I felt. If anything, I feel better just getting it off my chest.

FUN!!!

Just a warning - the title of this post is a sarcastic one. Yesterday we had a neurologist appointment for Kendal. We had this appointment because several months ago I had called the doctors office because I had concerns over Kendal doing an odd behavior of tilting her head drastically to one side for 5-15 seconds while walking around. Now, wait. I know it sounds stupid to call the doctor over something like this, but because of the high risk of seizures (80-85%) associated with Angelman Syndrome I am on high alert (and a little crazy, I admit). The doctor had previously described the many different kinds of seizures, and I wanted to at least inform him of what she was doing. The nurse had gotten back with me and said the doctor didn't think it was anything to worry about, but he did want to go ahead and see her again in the next month or so. Hence, yesterday's appointment.

The weather yesterday was ugly so I dreaded taking Kendal all the way to Vanderbilt, fighting the traffic, navigating the parking garage, and getting her out. The appointment was at 10:00 and they actually called us back after just a few minutes of waiting. A doctor that I had never met came in, introduced himself, and starting asking questions about Kendal to determine our concerns. We really had no concerns (at least for the neurologist) to speak of so we ended up talking about some behavior issues that we have been having. The doctor finally comes in and maybe stays for 5 minutes. He is not in a position to see patients as he was having bad back pain and could hardly walk. He said our concerns we needed to take up with another doctor and said he would see us in another 6 months. Before I knew it, he had already left the room. I was livid to say the least. He had not spoken or even acknowledged Kendal when he was in the room.

I emailed the doctor today after some more thought and explained that I was not sure why he needed to see her again in 6 months. I further told him that I had to take off work to make the appointment and that it was a complete waste of my time. I even said that it seemed like they were trying to figure out why I was even there if I didn't have any concerns and I pointed out that he had requested the appointment, not me. He has been good about returning emails in the past. We will see if I get a response.

I wasn't in any way trying to be disrespectful but I think it is important for these doctors to remember that it is not easy making these appointments, especially in our busy lives and to have my time wasted is extremely frustrating.

I wonder how much he will bill my insurance company? Do you think it will be a discounted rate because of the little amount of time spent with us? I'm guessing no - What do you think?

The End of 2008 - A Whirlwind

Me and Kendal at Thanksgiving visiting family.

Kendal playing with the paint used to paint Christmas ornaments.

Me and Kendal doing some shopping with Aunt Tara. As always, Kendal is trying to entertain the "passer-bys".

Nana, Grandpa, and Kendal (in her Christmas dress) on Christmas Eve.

James helping Kendal unwrap a gift on Christmas morning.

I can't believe it is already 2009. I'm so excited about the new year and what adventures it might bring. We have been off from work quite a bit in the last two weeks and loving every minute of our time at home. I am posting a mix of pictures from the last month to show some of the things we have been up too.

We were able to visit with so many people for the holidays. We had dinner with my dad's side of the family, my mom's side of the family, my sister, her husband, and the girls, James' family, and some good friends of ours that moved to Houston earlier this year. We hate that we aren't able to see some of these people on a more regular basis - we had such a great time visiting!

Kendal only had therapy one day this week due to the holidays but next week we will dive back into our regular schedule. Tuesday we have another appointment with the neurologist for a checkup. Kendal has contracted the oral Type 1 herpes virus and has had cold sores continuously (moving around her mouth) for the last month. Although it doesn't seem to hurt her, I hate that this will probably continue to be a problem since she drools so much. When the geneticist saw her, he immediately noticed the inflammation and wanted us to talk with the neurologist about possible medications to help control the drool. Excessive drooling is common with Angelman Syndrome, and although the geneticist said he does not normally recommend medications for this problem (side effects are not worth taking the medication in many cases), he thought it was something we might need to take a closer look at because of the herpes virus. Topical medications are useless because we cannot keep her mouth/chin dry. She will probably be one of those kids with a bib on in every picture, although I have been better about removing it when the camera comes out!

I hope everyone had a fantastic New Years and best wishes for 2009!

BTW - Has anyone seen any big increases in their electric bill? We just got ours and it's up $100 from last month and $120 higher than December 2007. What's up with that?