Making a Joyful Noise

Extremity

2011-01-25T07:37:00.008-06:00

"Extremity - an intense or the utmost degree"

..............................................- via Merrian Webster Dictionary

As a mom, I find myself constantly in the extremes. I don't know if this is what all mothers feel, but as a mom of a special needs child I am forever snarled by extremities. We have all heard that with great difficulties/obstacles/hardships comes great reward - and as I continue this journey, I find that it is so true. With the greater struggles comes the most prized moments of joy and relief. I remember that when my mom struggled through her battle with breast cancer, that when she had a "good" day it was really a good day. Most often we don't realize just how great the small things are until we have walked through the shadows of despair. Thank you God for showing me your Glory through extremities.

Life has been crazy busy lately - is this what I am to expect as time continues? I have fantasies about a Norman Rockwell painting where everyday life just seems like a lazy Sunday afternoon on a porch drinking lemonade. Did this life ever really exist for anyone or was it simply Norman's fantasy as well?

I remember as a child hearing old people (or so I thought at the time!) talking about how time flies. I had no clue that they literally meant that it goes by so quick that you don't know even what you did or had time to do. I am still trying to process that it is already the new year and that Kendal will be turning five in two months. Five years old? How is that even possible?

I remember wishing away the different times we went through especially trying times, but even now I long to get some of that time back. I see my 90 year old grandmother and see that all she does now is look back at the memories of her life. Does she look back with regret of things she did or did not do with her life or complete happiness and gratefulness? I don't want to look back wondering why I always thought next week/month/year would be so much better than today. Instead of wishing times away this year, I truly want to embrace time despite my hatred for it's speed. To actually swallow down the hard times a little slower so I can be more grateful during the joyful times.

All that being said....the last few days have been a struggle for me. Kendal is coming up on a life stage for going to Kindergarten and it is looking as though the school system will probably not recommend her to start this year. This is just a strong hunch at this point as her IEP to determine this will not occur till April, but based on Kendal's level of skills (mainly self-help), I do not expect her to start school this year. For those that don't personally know Kendal or I guess any other AS kids, Kendal cannot do alot of tasks on her own. And when I say this I would like to add a DISCLAIMER........Kendal is my child. She is beautiful, incredibly smart, and full of love and life. I do however know her current limitations. I am not insulting my child's intelligence or abilities by pointing out these limitations or in anyway saying that these limitations won't be overcome tomorrow.......END OF DISCLAIMER. With that out of the way, small menial tasks such as drinking out of a regular cup, using the potty, and following instructions of getting in line and sitting down (in a classroom setting) on her own are impossible. I know these things - I am her mother. Still, to have someone else point out these issues is incredible infuriating. I know this makes NO logical sense but as a mother there is nothing more personal than my child. And sometimes facing reality is just something I don't want to do.

An example: I recently called the ballpark to look at placing Kendal on a T-Ball team. I feel like we need to expose her to everything else a "typical" child experiences. The ballpark informed me that they have a special team for special needs kids designed to be appropriate for their particular skill levels. Logically this sounds like a great program. But I didn't want to hear that Kendal playing on a regular team would not be advised based on her skill level. I want my kid to be like everyone else and playing with the "regular" kids. I don't want her segregated, and yet I know this is just the beginning.

I know that Kendal will always be drastically different from her peers. I know that she will always be somewhat of an outcast throughout her life with people that don't intimately know her. This is not being said to be ugly or mean, but having a child that can not speak will greatly inhibit her from making friends and building relationships. I HATE this ugly truth. I HATE that most people won't know how cool Kendal is. I HATE Angelman Syndrome and how it has stolen my daughters voice. I hate, I hate, I hate.

Again with the extreme feelings. Being so filled with hate over how this disorder has robbed her and yet being so thankful and grateful to God that she is healthy and loving and happy all the time. Trying to accept that she is how she is and that she will never be "normal" is a constant struggle for me. But for me now, I will keep concentrating on the moments of extreme pleasure and joy. I will try to push away my hated for AS and intake the experiences (good & bad) that come along with raising a special needs child. Everday is a new day with new dramas and luckily, God is there for me every step of the way.

Early Christmas for Kendal!

2010-11-21T20:25:00.011-06:00

Before going into this post tonight, I wanted to say a big "THANK YOU" to one of my favorite people - Ginny (withholding your last name to protect your privacy!). Not only is she absolutely beautiful inside and out, but she makes everyone else feel that way too. Thank you, Ginny, for always checking my blog. Sometime I think the only people that read it are me, James, and my parents. I truly appreciate the feedback - but most of all, your love and support.

And now onto the post.....

You know when things just seem to fall into place out of the blue? That's what this post is about.

Kendal loves being outside. It doesn't matter the temperature, inclement weather, or sickness; this child loves being outside. And for those that know Kendal, I love her being outside too! In the house, nothing can keep her attention and she is constantly looking for something to destroy. She has sprouted up so much this spring/summer that she now requires bigger playground equipment than the ones we had before. She had long since fallen completely in love with a teacup merry-go-round at her daycare. Throughout the next several months I searched the web and Craigslist endlessly and could find anything like the one at the daycare for under $850. Obviously, this was not an option. I grew tired of the search and planned on just getting a small swingset next spring.

After not looking for about two months, I pulled up Craigslist in boredom and lo and behold, I found a teacup merry-go-round just like the one at daycare. To beat all, it was located within a hour drive. The seller also listed a slide but I was so eager about the merry-go-round, I didn't pay attention to anything but the phone number to call! I agreed to meet the gentleman the following day (Saturday) to look at what he had. That evening, Friday, I stopped by my parents house for a quick visit and told them about the exciting news (they knew I was looking for one). After talking briefly about the seller, come to find out, my father personally knows him! How bizarre is that???

To make a long story short (because I tend to be exceptionally long winded - I can thank my mother for that one!), Nana and Papa helped purchase both the merry-go-round and slide at a great price. Both pieces had been sitting since last summer, and the merry-go-round was inoperable. My dad, the perfectionist/workaholic, would work all day long and then come home and immediately start working on the merry-go-round. On the third day, I brought Kendal by to see her merry-go-round and I was completely in shock. It looked and operated like it was brand new!!! I don't know how my dad did it (I felt like Santa really had a hand in this!), but I do know that it was just one way of showing Kendal how much he loved her. That's all that mattered to him was getting it perfect for her. I felt so much pride and love for my dad that night. He continues to amaze me.

Fall Carnival

2010-11-05T20:57:00.000-05:00

This was another action packed day for Kendal. I picked her up from school and took her to her daycare to enjoy the fall festival with games, face painting, pony rides, and more. It was a little chilly but it didn't stop Kendal from enjoying all there was to offer. As you can tell, she especially liked the pony ride!

Halloween 2010

2010-11-03T20:49:00.003-05:00

I can't believe Halloween has come and gone already this year! But nevertheless, Halloween was a beautiful day. Me and Kendal went to church in the morning and then took a nap shortly after. We got to play outside for a while and then it was time to wake up James and start getting Kendal ready for the trick-or-treating. While I took Kendal out this year, James stayed at home, made chili, and passed out treats. What a great day!

A Simple Reminder

2010-10-29T08:18:00.002-05:00

This morning I got a simple reminder that I can't do it all. That as a mother, a wife, a full-time employee, an employer, and a friend, some things will not get done. Some things will fall between the cracks. Some things are completely forgotten. And some things just aren't that important. For those that follow my blog, this is something that I have struggled with especially since Kendal was diagnosed.

For some reason, since Kendal is not "typical", I have strived to excel in being an excellent mom to the outside world. I want everyone (except in the confidence of family & friends) to think I have it all together. That despite all my responsibilities, I can still manage to make cute little valentine treats for the class. That I manage to bring treats for parties, gifts for teachers/aides/therapists, and that I make monetary donations to help with activities. What a joke I am! Who am I kidding?

I don't have it all together and I struggle as much as any other parent. Why must I feel like I have to have it all together and be perfect? Am I that desperate to care about what others think of me? Is it my subconscious telling me I had something to do with Kendal's development of her disorder and that I must try to make up for it? Is this something that God is trying to correct in me (I sure hope so!!!) and teach me that my purpose here is not to care how others judge me?

What started this was what happened this morning. I had gotten up extra early to make some treat bags with candy and Halloween favors for the kids in Kendal's daycare class. After I made the 20 bags, I rushed to pack her snack bag, fix Kendal's breakfast, pick out clothes (& extra set), pack Avon orders to deliver, pack her book bag, and finally get Kendal changed, hair up, fed, and out the door. When I got to school and was walking Kendal to her classroom, it was then that I discovered that today was dress-up day and Kendal was the only one that wasn't in costume. I felt awful. Here I had done everything (I thought!) and still managed to isolate my daughter by making her different. When I got in the car I cried because I realized just how crazy my life was and just how lost and behind I always feel in accomplishing things. I can't do it all. It's okay that I can't do it all. Some things just aren't that important. And yet, I collapse in a depression when I realize again that I fall so short of what it seems like other parents can accomplish. I truly feel like a failure at times.

I know this probably seems over dramatic, but this blog is meant to be my platform to express my honest feels - the good, bad, and ugly. Being a mother is the hardest job I could ever imagine. Some days your heart explodes with the sheer love you feel for your child. Other days you fantasize about running away.

The fact that Kendal didn't have her costume on probably meant nothing to her, but to me it was a simple reminder that I failed again.

In addition, as I write this, I just remembered that I also forgot the cubed cheese for the party today that I made an extra stop at the grocery yesterday evening to buy. Just another lapse on my part.

Does anyone else struggle with these issues as a mother or am I alone in trying to create some fantasy of perfection?

Bella Bash 2010 - Melinda Doolittle debuts Let Love Do What It Do

2010-10-26T08:08:00.001-05:00

This was a great song that Melinda Doolittle wrote! The Bella Bash was great and supports such an amazing cause.

Video w/Interviews of the Bella Bash

2010-10-26T08:03:00.000-05:00

Nashville Country Club: Danny Gokey & more at Bella Bash – for Regie Hamm’s cause

Excited About This!

2010-10-19T07:50:00.000-05:00

http://www.bellabash.org

A Great Fall Day!

2010-10-13T19:56:00.016-05:00

The first weekend in October, me and Kendal went to visit my sister, her husband, and my two beautiful nieces in Jackson, TN. The weather was a nice fall day with a crisp breeze in the air. We decided to all visit a local pumpkin patch and we all had a really great time!

This pumpkin patch had a really neat exhibit for the kids. You had to help around the farm. Everyone had to get a basket and get to work!

Next, you had to gather the eggs..... Then, it was time to pick the apples off the tree..... Milking time already???

Next, picking the tomatoes off the vines...

Off to the cotton warehouse to get it ready to take to market.....

One last thing before we're done....dig up the potatoes (Kendal's favorite!)

Oops! We almost forgot to search for that perfect pumpkin!

It was a great time and I know one that I'll remember for a long time. Thanks Katie, Mike, Marilyn, and Olivia!!!

Kendal in Speech

2010-10-11T21:25:00.003-05:00

Love, love, love my Kendal signing "thank you" after her treat.

April, June, October....What Month Are We In???

2010-10-06T20:43:00.002-05:00

I am completely amazed at how time flies. As a child, I heard this over and over and yet I feel as if I can't even get my mind around the fact that I have now been married for 11 years and that my daughter will be turning five in the next several months. I can't quite grasp that time is leaking between my fingers like sand - I can't contain it or slow it down. All I can do at this point is try to remember some of the amazing things that happen in my life and try to hold onto them.

My days (and Kendal's) are completely filled from sun-up to sun-down. Little tasks, such as dressing, tend to take twice as long as most people probably take. Once Kendal's clothes have been chosen, I then have to round her up to stop moving. Between fighting her to change her diaper, trying to bend her legs to get them in the pants (she likes to stiffen up like a board to give me a challenge!), ducking in between her swings to avoid a slap in the face, and physically pinning her down to pull her hair up - I can't wait to get to work to get a break! Then I try to remember what day it is so I have her bags appropriately packed. Trying to remember who I pay this week - did I pay the daycare, the aid, or therapist this week? What is going on in her school class? What activities are going on at daycare? How can anyone keep up and still manage to hold down a full-time job outside the home? I have realized and now KNOW that I can do these things only by God's Grace. He gives me exactly what I need each day to make it through and always provides the strength and patience to start a new day.

Kendal seems to be going through another phase of aggression. We see the Developmental Specialist next month and I think I will once again look into the medication route. It is difficult for me to continually take the hits as she has gotten so physically strong and strong-willed. But I am her mother. What about people that don't love her unconditionally as I do? How is she to make friends if she won't stop hurting people. I'm terrified that she will grow up isolating herself and end up in a home that no one ever visits because they don't want to get hurt. I just wish there was an easy answer. I know that God is working on her and teaching me and others at the same time. Hopefully, we can help get some resolution on this in the next several months with parent training and medication.

Some great news is that we have had a breakthrough on the sleep issue. I'm not going to say that there are no longer any problems, but recently the sleep disturbance has not been as bad. About 10 days ago, the neurologist emailed me (on Sunday night at 8:45 - I love our doctors dedication in trying to help us!) stating that she had been thinking about other things that might be causing the sleep disturbance. She had noticed that Kendal had previously taken Prevacid for reflux and wondered why we were no longer using it. I explained that Kendal no longer demonstrated signs of reflux so we removed the medication. She suggested we try it again just to see if it helps her sleep. We immediately went to the doctor to get another prescription and Kendal has been doing significantly better at night with less awakenings and shorter awake times. I can't believe the last two years she has had reflux waking her up in the middle of the night and we had no idea. I have spoken to adults with acid reflux and they all state that it will wake you out of a dead sleep and keep you up for a couple of hours. I have heard it is painful. This is one of the sad parts about having a nonverbal child. She might have been suffering this whole time - but then again Kendal has such a high threshold for pain she might not have ever realized it hurt. I hope we are finally on the right track - God answers prayers!

Well, I have got to go for now but will update in a few days with pictures from a recent trip to Jackson.

Have a GREAT rest of the Week!!!

2010-09-09T09:03:00.001-05:00

Changes Over the Summer

2010-09-09T07:28:00.003-05:00

This summer has been busy as ever and I wanted to fill everyone in on the latest....

Kendal is continuing to make great strides in speech therapy - she is making more sounds, beginning to use a few of her signs without prompting, and even trying to say phrases like "I love you". I have to give HUGE credit to our speech therapist, Ashley Carlson. She is amazing with Kendal and knows how to get the most out of her. She's worked with Kendal for about 16 months now and we are blessed to have her in our lives.

One of the newest developments with Kendal has been that we have had to hire a private aide to be with Kendal during the day at her daycare. Kendal requires constant attention (due to pica, aggressive behaviors, and inability to do tasks by herself)and the daycare obviously is not equipped to provide such individualized care that Kendal requires. The daycare has been amazing and has constantly provided support to help Kendal and our family. Her aide right now is a young girl that recently graduated from high school and is now attending college in hopes of getting a degree to work with special needs children. I was scared Kendal would scare her away from her desired occupation!!! Kendal has challenged her, but absolutely loves her. The aide keeps Kendal on target at school by making sure she engages in appropriate play with her peers, works on academic work by doing hand-over-hand, potty-training, and following directions. Again, we are blessed to be able to find just the right people to work with us!

Kendal also started school back in the local elementary school for the pre-school special education program. The permanent teacher is back in session and she is doing an amazing job. We are really excited about the constant activities that they have going on in the classroom and the aides that work in the classroom. These people do the work they do because of their love of special needs children. All these people that work with Kendal on a weekly basis are helping her so much!!!

Got Me Thinking

2010-08-05T06:12:00.002-05:00

I was at work the other day and heard a commercial for the last season of The Oprah Winfrey Show. What caught my attention is that Oprah was saying that the one primal thing she has learned after all these years is that people just want to be heard. They what to have their voice. They want that connection with others. This really got me thinking.

Having a non-verbal child, I couldn't get the worry out of my head about Kendal wanting to have her voice. I can't imagine how hard it is for her watching the world around her chatter away without being able to get in a word. I know that Kendal will always be "different" from others in the fact that she won't be able to talk. I know that most people will never know how cool she is because they will never take the opportunity to know her. This realization is so hurtful to my heart. We all want our children accepted, but realistically I know that Kendal will be made fun of due to her disability. The hard part for me is that she won't be able to dish back at them what they throw at her. Will she understand when she is insulted or made fun of? Will I be able to teach her that is doesn't matter what those people say about her? Will she mentally understand what is going on? I don't know the answers to these questions, but they keep me up at night. Gnawing at me when I am weak in my faith.

Part of me wants to be there to defend her when she won't be able to defend herself. I imagine what I would tell people when they give us ugly looks at a restaurant because Kendal is loud or hard to handle. I imagine what I would tell little children who innocently ask me why Kendal won't talk, even though I don't really know the answer myself. I fantasize about Kendal waking up one day and she is a "normal" child. No more therapists, no more specialists, no more medications, no more battles with her, no more constant worries over paying all her expenses, no more..........

I wonder what I can do to make sure Kendal is heard. To make sure that her thoughts and feelings are valued even if she can't express them like most people. I don't know the answers to these questions but they continue to weigh on me. I will continue to work toward understanding how Kendal must feel and give her any and every way to express herself. I know I must help her get her voice. I know that she has important things to say and it is my job to find an outlet for her.

Sleep??? Are you kidding me???

2010-05-24T20:41:00.003-05:00

Kendal is as resilient as always. She continues to amaze me. She has more things to do and places to go than most children her age, and yet she handles it so well - especially considering she doesn't sleep much! On the other hand, it's really all she knows. I look back and realize that I started her in all her therapies when she was just 12 months old. She has been doing all this stuff for 75% of her life. She's such a fighter!!!

Kendal's sleep issues have continued to get worse over the last several months. This is a common problem with Angelman Syndrome, although I don't think the doctors quite understand the cause, except that it is something with the wiring in the brain.

Kendal's bedroom is empty. When she was an infant she had the most beautiful room. I spent alot of time and money decorating it so it was just perfect. Over the last 2 years, we have had to slowly remove things from her room that could injury her. It started with the pictures. She would wake up and swing her blanket at the pictures to knock them off the wall. The beautiful curtains also had to be removed as one night she ripped them off the rod. Her bookshelf that I spent hours arranging all the decorative pieces and books on had to be removed because we were scared she would try to climb it and pull it over on herself. Her dresser came out of the room too because she would climb on top and not be able to get down. In addition, the box spring had to be removed because she would wake up and have a total fascination with taking the mattress off the box spring and trying to tear into the matting on the box spring. Plexiglas went up over the windows and the only thing that remains in her room is a mattress on the floor and a shelf on the wall. The two items on the shelf are a baby monitor and a sound machine (each of which have been velcroed to the shelf). The nursery that I took such pride in has now been replaced by what looks like an institutionalized room for the criminally insane. Oh, how far we have come.

I can't quite describe what it is like going through this. James works nights and I am alone with Kendal most nights. She usually wakes up around 2am-3am and does not go back to sleep. Therefore, over the last couple of months, I have probably only averaged 4-5 hours of sleep a day. I have always been the kind of person that required alot of sleep and I will tell you that being sleep deprived has caused alot of physical and mental lapses on my part. Of course, I still work full-time, and my work has suffered lately from my exhaustion. I have forgotten important things, not had the best attitude, and have continued to over-extend myself.

We saw a sleep doctor at Vanderbilt the Friday before last and began Kendal on some new medication designed to aid with her sleep issues. I really liked the doctor. I know pretty quickly the good ones from the bad ones with as many experiences we have had with doctors. She is the department head of Neurology but she was very down to earth and she asked alot of questions and listened thoroughly to my answers. She has a child with a disability and I find that when that is the case, the doctor always seems more understanding and concerned. The medication prescribed is called Clonazepam (Klonopin). We have already increased her dosage twice in accordance with the allowance the doctor gave us. It does seem to be helping a little now that we have increased the dosage to 3 dissolve tablets a night. We are also still giving her a nightly dose of Melatonin. We now just need to pay close attention to the way she acts over the next couple of days. As always, the scariest part of the medications can be the side effects. Since Kendal can't tell us how she is feeling, we just have to judge by the changes in attitude, crankiness, aggressiveness, etc.

Although I already feel like we are going in the right direction on this medication, I am just so happy that we are now with a doctor that really seems like she is trying to help us. Since the appointment, I have had email contact with her and she will be calling me tomorrow evening to discuss the progress with the medication. The only other thing she mentioned in email was possibly looking into the a safe bed (http://www.sleepsafebed.com/index.htm). This would absolutely be a last resort but we are keeping our options open - Kendal's safety is the most important thing for us and as she gets older we definitely want to protect her during her nightly escapades.

I will try to update how the medication is continuing to work. I know that almost all the Angelman moms I have talked to have had similar stories of their own. I hope this can prove beneficial for someone experiencing similar issues.

The picture of an Angel...

2010-05-22T10:46:00.003-05:00

2010 Angelman Walk-A-Thon

2010-05-18T21:54:00.002-05:00

We wanted to again thank everyone for coming out to support us this year at the 2010 Nashville Angelman Syndrome Walk-A-Thon. We had the biggest team this year and everyone loved our customized shirts. We are truly bewildered by the love and support we have around us. God has blessed us beyond belief!

Also, we raised close to $3,500 with the additional money we submitted on Saturday (not online). Thanks again to everyone that helped make this event such a big success!!!

2010-05-18T21:52:00.001-05:00

Making Myself Promises

2010-05-10T21:06:00.004-05:00

I keep making myself promises to do better on this blog. I want to update it more so I can remember all the things we've done and just how far Kendal has come. Sometimes I feel like nobody even cares to read it because it's boring everyday stuff, but I know it is good for me to stop and write these posts. It helps get out all my frustrations and reminds me just how good life is when we have one of our good days.

One of our good days is illustrated in the pictures below. I am terrified of horses! Don't know why, just know that they are much bigger than me and that they can hurt me. We visited my aunt and uncle who have horses and something told me I really should not pass down my fears to Kendal, who actually might enjoy them. Alot of children with Angelman Syndrome do hippotherapy. Kendal has never really needed this additional therapy so I never pursued it, but she did so good! Look at my little brave baby! My sister Katie and my aunt Kristy held Kendal in place, while my uncle Joe steered Bo(the horse). I think the pictures tell the rest of the story.

I look at her and am so amazed. I know all parents must feel that way about their child - but maybe because of her disability, I don't take it for granted as much as most parents. I truly can't fathom why God blessed me this much. I am just humbled to have this life, thank you God for your grace!

Tomorrow I take Kendal to the Neurologist and then to the Developmental Specialist. Both of them are follow up appointments so I am not anticipated anything new. I am however really looking forward to her appointment on Friday to see another Sleep Specialist. Her sleep has been really bad again, and with James working nights, I am on my own with her. This particular doctor is supposed to be more familiar with her disorder and why sleep is so affected by it. If I have another doctor tell me she needs a routine, I'll think I'll kill someone! The girl has more routine than anyone - Her nighttime schedule is exactly the same everyday (+/- 5 minutes). I can't possible fit anymore routine into our schedule. It's not the routine that throws her off - it's her brain! I will definitely do a post on this appointment.

Got to run for now, but will really try to do another post by the end of the week!

2010-05-10T21:01:00.001-05:00

Finally Some Great Weather!

2010-04-11T20:52:00.004-05:00

I think we are finally going to see warmer and warmer temperatures from here on out. Thank Goodness!!! The winter months have been brutal especially with Kendal trapped in the house. Now we use any excuse to get out of the house. Since I haven't been that great lately at updates, I'll give a quick synopsis of the latest in the Crocker household.

Kendal had a great time at our family's annual Easter Egg Hunt. I did put her in a cute dress which for those that know me know that I am not too much into dresses myself. Kendal plays so hard, I rarely have her in a dress. But anyway, we had a great Easter Lunch and then followed it up the Easter Egg Hunt. We did a practice run at home so she understood the goal of picking up the eggs and putting them in her basket. As soon as she realized candy was in the eggs, she really wasn't interested in continuing to gather them, she was ready to divulge in the goodies. She really had a blast and so did we.

Kendal had her IEP Meeting last Wednesday and it went great. We are truly blessed to have such amazing women working with Kendal. I think she has stolen everyone's heart and they are 100% dedicated to improving Kendal's skill sets. Behavior wise she has been doing remarkably better at school. I think she is finally learning that communicating through words or signs gets her what she wants much more easily. Summer school has been made available for her (so she does not regress) but considering the driving around to get her and take her for only hour (I think) a day just doesn't make sense so we will probably decline that service. We are staying on track with her goals as we all see that she is making progress. Praise God!

We decided to take Kendal off the Focalin last week. Even though she seemed to be doing much better in therapy (speciafically speech), she seemed to get more aggressive during her free time. I don't know what we will do at this point. Kendal has two or three appointments next month (neurologist, deveolpment specialist, and I can't remember what else!) and I will just wait and see if the doctors have any more advise. In the mean time, I am trying to get her into "play" therapy to work on bad behaviors that we are seeing at home. All the paperwork and evaluations will probably take a few weeks but I will update you when I know more.

We finally signed a contract with a Special Needs Advocate last month. This advocate will work with us for one year and help us make sure we have everything set for for Kendal's future. From estate planning - to more life insurance policies - to scrapbooks on Kendal's medical history - to all the legal stuff through an attorney - and everything in between, our advocate will help us to stay focused to get this important stuff handled. This is such an important step to take and that is why we are investing some much money and time in preparing for her future.

This weekend me and Kendal spent Saturday with my grandmother. She really is a help in going shopping with me - she pushes Kendal around and entertains her and I actually get my shopping done. We went to Target, Applebees, Publix, the park, and then the cemetary. Kendal and grandma were still going strong by the end of the day and I was completely exhausted. It was a beautiful day though and I'm truly blessed to still have a grandmother that is so active. She will be 89 next month and she is such an inspiration. She's so wise and yet despite her age, she doesn't think twice about being silly with Kendal. I swear it cracks me up just watching them together - they spend so much time just laughing with one another.

Today, after church we came home and after a quick lunch put Kendal down for a nap. Surprisingly she zonked out for 2.5 hours and gave me the chance to veg out, watch some stuff I had on the DVR, and fold some clothes. After she got up I took her to the new park down the street. It was surprisingly deserted and me and Kendal had the run of the place. We both swang, went down the slides, climbed a rock wall, and tried doing pull-ups (neither of us was very successful). We were orginally supposed to visit with Shirley in Spring Hill but unfortuantly it fell through at the last minute. We will definitely try it again in another week or two!

I'm so looking forward to this week being beautiful - I hope evryone has a GREAT one!

Fundraising - So Important to our Cause!

2010-03-29T22:07:00.001-05:00

Special Education Week

2010-03-29T21:12:00.017-05:00

Yes, this is a little behind. Last week was Special Education Week and I just wanted to personally thank all the people involved with special education. Teachers, aides, and therapists that make the decision to work with children with special needs - do have any idea of the impact you make in our lives?

Where would we be without you??? You have become our closest friends, our warriors, and our support system. You have shown us how to be patient and thankful. You have hugged me when I broke down in front of you and loved my daughter as your own!

I thank you from every fiber of my being. You encourage and amaze me!

These few pictures does not at all illustrate the magnitude of people that have and continue to work with Kendal on a weekly basis, but here are a few. Again, we thank you and will always remember all that you have done for us.

2010-03-25T20:52:00.001-05:00

March Madness

2010-03-24T01:59:00.003-05:00

March is truly a crazy month for us every year. Between Kendal, mine, and my brother-in-law's birthday at the beginning of the month (9th, 10th, 11th), birthday parties, annual vacation time, and the usual grind of everyday life, March is at best a blur. Over the next few days I hope to make several entries on things that we have done this month - it has been exciting needless to say.

We started this month by taking an annual vacation during mine and Kendal's birthday week. This year we visited some friends, Matt & Bethany, in Camden Arkansas. We had a really good time and it was great to visit them. They do not have children and I am not sure that they ever will after spending several consecutive days with Kendal! She was buck wild as usual and I was a total nervous wreck that she was going to break something in their home. They were so extra accommodating and rolled out the red carpet for us - I was really getting used to it! We also spent a day in Hot Springs, AR visiting the bath houses that were set up in the early 1900's. That was totally eye opening and fascinating - I hope you enjoy the pictures!

Once we got back into town - everything was in full swing in preparation for Kendal's big 4th birthday party this year. We had it at The Discovery Center at Murfree Spring (www.discoverycenteronline.org) and is was awesome. Over 50 kids were invited and I think over 30 showed up (again, it was a total blur!) More people showed up than I anticipated but it was so fun and everyone seemed to have a good time. Kendal was overwhelmed especially when everyone sang "Happy Birthday". All eyes were on her and she was eating up all the attention! Again, I was overwhelmed by everyone that showed up. I am continually amazed that we are surrounded by so much love and support. A big THANK YOU to Grandpa and Nana Dayton for the beautiful birthday cake they purchased for the party. It matched the invitations and was so cute not to mention one of the best tasting cakes ever. Thank you for handling all that for me and giving me one less thing to worry about! I appreciate you!

Kendal also had her first dentist appointment that week - something I had been putting off for obvious reasons. Kendal is not real keen about brushing her teeth with her oral sensitivity issues but I knew it was time to bite the bullet to see what was going on in her mouth. To my surprise, she did great! She fought a little which was to be expected but overall she was given rave reviews on her teeth. Another thing marked off the list!

I know this is nail biting journalism at its best, but calm down - I need to draw this out, so just stay tuned for more adventures in the Crocker household. The next entry will be about Kendal's follow up appointment on her medication options.

Thanks for reading!

A Little Bit of This, A Little Bit of That

2010-02-23T21:10:00.007-06:00

The above picture shows just how far Kendal has come with letting things touch her face/head. I got Kendal some sunglasses to try to keep encouraging her to try letting things touch her face. As Ashley, our speech therapist, will let you know, Kendal is not too keen on anyone touching her face or head! Two solid years of Occupation Therapy once a week, and she is just now beginning to experiment with things. She will not allow us to put the glasses on her but she will hold them up to her eyes for a second at a time. Hopefully in a another year or two she will tolerate them being on her. Every time I see these beautiful little toddlers running around in cute little sunglasses, I feel like telling the mothers, "Hey, don't you realize how awesome that is? Not everyone can do that!"

Not much has changed since taking Kendal off of the Clonodine except she is SLEEPING now at night!!!!! That is a major accomplishment and we are all so much happier because of it. We have been pounding away this month with all our weekly therapy sessions and Kendal has been cooperating fairly well.

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I can't wait until the weather warms up. Saturday afternoon I got out with Kendal for a walk and she had a ball. If only we could all be that happy just going out for a walk. She saw a bird, she SQUEALED! She saw a car go by, she SQUEALED! She saw someone else walking, she SQUEALED! -- I guess you get the point. Of all the lows that seem to come with this disability, I am so blessed to hear her beautiful laugh and know that she is happy.
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This weekend she got sick and I had to stay at home with her on Monday. I keep forgetting to let little things clue me into when something might not be right with her. For example, Kendal did not woof down her lunch of mac-n-cheese like she normally would. Very unusual for my girl. I should have known something was up. It's just so hard because I have never seen her rub her tummy or groan or anything like that to make me think that she might have a tummy ache. How do I know??? Is she hurting physically but just doesn't know how to express it??? I guess I will be on a learning curve over the next 20 years.
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Bath-time has been a new joy for Kendal. She doesn't play with any toys (Any other AS kids like this? She expects me to be her toy!) but she loves bubbles. The only problem now is that all she wants to do is eat bubbles. She lays belly down in the bathtub and eats all the bubbles she can. When she raises her head she always has a bubble beard and mustache. I'll try to get a picture. It's comical to say the least.
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Anyway, nothing too exciting - just wanted to update everyone on how things are going.
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Have a great week!

Medicine - The Great Unknown

2010-02-08T20:36:00.002-06:00

We have been so busy the first month on the year. As Kendal fast approaches her 4th birthday, I'm finding that she is growing in leaps and bounds. Not only does she amaze me by figuring out how to dismantle things (such as: removing the battery covers on the remotes and taking out the batteries, trying to put the key in the hole to open the door, and most annoying.....only showing interest in my toys {cross-stitch, scrap booking, etc.}) but she is growing so fast physically. She seems to be bigger than most kids her age and as strong as an ox. I even have realized that now it is hard to catch her when she is running from me. Where has the last four years gone?

Kendal has also gotten more and more difficult to manage as far as her behavior goes. I think this makes sense simply because she is trying to stretch her legs and find her boundaries. I probably am more controlling than most mothers because I have to be. She has become extremely destructive, more aggressive towards me, and quite possibly trying to show me (or teach me) that I cannot control her like I could when she was an infant. Such menial tasks as dressing have become a major ordeal because she straightens out like a board and refuses to cooperate. Fighting against her just makes the issues worse so I usually try to redirect. I can just picture in her mind saying, "No, I want to do it my way!" I wonder where that attitude would come from??? I guess she is more like me than I even let on.

Because we have been so frustrated with her aggression, and outrageous activity level, we went to the doctor and they prescribed Clonodine. A nice side effect was drowsiness which we were looking forward to with all of Kendal's sleep issues. Wouldn't you know it had the opposite effect on Kendal. After 10 days, Kendal has gotten more emotional (crying spells - very unusual for her) and her activity level has not decreased along with very little sleep at night. We decided to pull the plug on the medication today so we will get her slowly off during the next five days. I am waiting to hear back from the doctor to see what other options we may have.

I have always been against medicating children simply because I feel like we over medicate our kids today. But simply put - Kendal does have a legitimate diagnosis and legitimate issues where medications can greatly help the child. On a positive note, the therapists and teachers did notice that Kendal was more participative in her therapies and that is one thing that we really think will help her. Just finding the right medication and dosage is a little scary.

Through all this I have really relied on my faith that God is with me through this. My problems are nothing that he is not aware of. I am grateful for the prayers I have received and so appreciative of the women in my Bible Study for continuing to pray for me and for our family. Every week God continues to reveal himself in what he continues to bring me out of. I am so thankful I am where I am and that we are not going through this alone. OK, I'm done with my sermon!

A Great Story!

2010-01-31T20:09:00.002-06:00

Please see the following link about a girl named Sarah Walker, who has Angelman Syndrome, and was just named homecoming queen of her high school. What makes this story unique was that she was voted cause she's a sweet and fun person to be around, not because people felt sorry for her. It's a great story!

http://www.pntonline.com/articles/school-19749-sarah-touched.html

How Does She Do It?

2010-01-20T07:35:00.005-06:00

It remains a mystery, like so many things that Kendal does. I've been trying to figure out how she got her diaper off..... I walked in this morning and she was fully clothed. She cannot get out of her clothes because they are zipped up the back, and yet her diaper was off and flung between the window and the plexiglass we put up in her room. This child can accomplish the impossible!

Speech Therapy Videos

2010-01-16T09:01:00.004-06:00

On this particular video, Kendal didn't do alot of vocalization. In the future I will try to get additional videos to better show her progress.

On this following video (beginning around 2 minutes, 15 seconds) you can see just how smart Kendal is!!!! I just don't see how the doctors say she is mentally retarded. She knows exactly what is going on!

2010 - Here We Come!

2010-01-10T15:43:00.012-06:00

Our Family - Christmas 2009

Kendal loves balls!

Me and Tara

Me and Grandma (Can you believe she's 88?)

Thought this picture was so cute - Tara, Kendal, & Lucy

Me and dad

2009 is gone and with it I am both sad and full of anticipation about what is come in 2010. Kendal has so much going on right now. She is flourishing in so many ways and more than what the doctors prepared us for - is there any doubt of how great our God is?

Christmas was great since we got to see so much of our family - just wish we could see them more often. My good friend Shirley gave birth to Max on Christmas morning. It doesn't get any better than that! As I get older older I am so much more thankful for what we have. Family and friends mean the world to me and I know that life is good.

I ended the year on a sour note mentally. I try not to get down in the dumps especially when I realize just how blessed we are. But occasionally I do let the blues creep into my mind and temporarily take over. I know this is "normal" but I still get frustrated that I freak out thinking about what is and what is to come. All the unknowns. As a Christian, I am so bothered that I continue to worry when I know that God is in control and Kendal is his child. I don't know if all the questions are a lack of faith on my part or if it is Satan trying to continually confuse me with lies and deceit. Whatever the reason, 2010 has not begun in a good way.

It probably started out when I took Kendal to the doctor in December and it was actually the first time I had been out with Kendal where her disability was very apparent. In the waiting room of the doctors office, there were several toys in the corner of the room. There were children playing with them as it was a busy day with the flu season in full force. Kendal was excited and began hollering and pointing to the toys. I continued to tell her to go play and that I would be watching, but for whatever reason she just kept watching the other children and yelling. It was the kind of yell you would hear from a mentally retarded child in an institution. She was so loud and it got uncomfortable because the children stopped playing because they weren't sure what to do. It grew more awkward as I received several looks from other parents as I got Kendal to hold her in my lap. I even got a comment from another mother, "Oh, she's so beautiful!" I broke down. I mean totally lost it there in the waiting room. Tears falling to the floor, flipped out. Why did it catch me so off guard?

It happened again we when we received the sweetest gift from Kendal's daycare. They had video taped different activities that the class had been involved in throughout the month of December. I again began tearing up seeing how Kendal was not able to name the states, recite the Pledge of Allegiance, recite the books of the Bible, etc. I know that Kendal can't do what other children her age are doing but it was somehow harder to see it on the TV. That Kendal - my child - was the one in the classroom that was different. I guess knowing something in your head and actually "getting" it are two different things.

To top it off, Kendal was more than a handful with all the additional days off from school and daycare. They continually have her stimulated by activities so when she is home she is completely bored. I'm not sure if other "angels" are like this, but Kendal has very little interest in toys. She is much more interested in you being her toy! She is constantly craving attention so if I am doing the dishes and not watching her, she will do something to get my attention. What does that usually involve?? Ripping pages out of books, throwing things at me, hitting me, etc. I try to remember that she doesn't have the option of saying, "Hey mom - over here!" I guess she has found out very quickly how to get my attention and she is very good at it I might add!

To top it off, she went about 10 days of waking up every night and being up for hours on end. Anyone that knows an angel probably has the same issues. Kendal is usually pretty good with sleep but she does go through phases where her insomnia keeps her up most of the night. James has been wonderful helping me get additional sleep from being up with her. Because Kendal is Houdini reincarnated, we cut out the feet in her PJ's, put them on her backwards, sewed up the neck so it can't be stretched out, and she is now still dressed in the morning. She has gotten out of almost everything and so far so good with her new nighttime get-up.

I guess I need to realize that we will always have good days and bad days. We just have to take it one day at a time. I must remember this isn't all easy for Kendal either. I know she gets frustrated and I know I work her tale off.

2010 will be great. I will try my hardest to get back into updating this more often. A video should follow in the next day or two of Kendal in speech therapy. Thanks for all the support and feedback we have gotten on this blog. If anything, I hope it helps another family who find themselves traveling down the same road.

November, really????

2009-11-03T21:19:00.010-06:00

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.

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.

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

2009-09-21T21:11:00.007-05:00

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!

2009-09-03T20:03:00.002-05:00

My little girl....

So Lazy

2009-09-01T20:31:00.003-05:00

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

2009-08-24T20:41:00.002-05:00

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

2009-08-19T21:26:00.004-05:00

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)

2009-08-12T21:19:00.002-05:00

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!

2009-08-04T21:41:00.001-05:00

Angelman Syndrome Conference

2009-08-04T20:44:00.012-05:00

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

2009-07-26T14:37:00.002-05:00

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

2009-06-18T02:17:00.002-05:00

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?

2009-06-10T21:11:00.008-05:00

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!

2009-06-07T10:39:00.004-05:00

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

2009-06-06T21:24:00.003-05:00

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.

2009-06-06T21:23:00.001-05:00

Yes, we're still here!!!

2009-06-02T19:34:00.005-05:00

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"

2009-05-18T20:36:00.003-05:00

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!

2009-05-13T20:00:00.005-05:00

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....

2009-05-12T21:58:00.004-05:00

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

2009-05-09T13:19:00.003-05:00

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

2009-05-07T15:20:00.003-05:00

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

2009-05-04T21:44:00.004-05:00

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

2009-04-27T21:15:00.009-05:00

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

2009-04-19T13:04:00.002-05:00

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?

2009-04-18T16:40:00.003-05:00

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

2009-04-14T06:08:00.005-05:00

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!

2009-04-12T20:59:00.006-05:00

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!

2009-04-05T14:05:00.005-05:00

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

2009-04-02T21:04:00.002-05:00

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

2009-03-23T20:35:00.002-05:00

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!!!

2009-03-16T21:13:00.005-05:00

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

2009-03-08T08:15:00.005-05:00

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?

2009-03-02T20:00:00.000-06:00

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

2009-03-01T21:46:00.006-06:00

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?

2009-02-28T07:01:00.004-06:00

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

2009-02-25T20:55:00.002-06:00

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

2009-02-19T15:59:00.002-06:00

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

2009-02-17T19:25:00.005-06:00

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

2009-02-08T20:01:00.002-06:00

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

2009-01-31T20:50:00.003-06:00

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

2009-01-15T18:58:00.003-06:00

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!

2009-01-12T21:04:00.005-06:00

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.

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.

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.

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.

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.

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

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

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

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.

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!!!

2009-01-07T20:52:00.003-06:00

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

2009-01-01T21:21:00.010-06:00

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?

Merry Christmas!

2008-12-25T16:14:00.002-06:00

Christmas is here and will be over way too soon. It has been such a beautiful day and I am so thankful to spend the holiday with our loved ones.

I had gotten the Faith Hill Christmas CD and have fallen in love with "A Baby Changes Everything". Listen to it here http://music.aol.com/new-releases-full-cds/#/1.

Is it December already?

2008-12-18T21:13:00.002-06:00

I keep asking myself, "Is it December already?" I can't believe how fast time is flying by. This week has been the usual with Speech Therapies on Monday and Wednesday, Physical Therapy today, and Occupational Therapy tomorrow at 6:30 in the morning. Ohhh, how I love the weekends!

On Tuesday we took Kendal to her new geneticist. This doctor is mainly a research doctor that only sees patients two days a month. He spends the rest of his time doing research mainly on Angelman Syndrome and research on gene therapy for genetic disorders. Both me and James really, really liked him. He was very personal and easy to talk too; which, for a geneticist is pretty unique. He spent over two hours with us covering so much information that I wish I had taken a audio recorder with us. I still am processing some of the things he told us and that is my job for the next 6 months until we see him again. Just to try to process and understand what we are dealing with.

I think as parents we always try to see the bright side of things when it comes to our kids. Of course, I walk in the office like I know it all because I am an "expert" on Kendal, as the doctor repeated several times. I noted to the doctor that she was obviously higher functioning than most AS children and that she obviously doesn't have any mental retardation or the seizure issues that so many have. I think I apparently came off disillusioned because he spoke first and foremost about what we are dealing with and stressed that we needed to prepare for the following: she probably won't ever talk, she won't be able to read, she won't be able to write, she won't be able to be unsupervised, and that she probably won't be able to live on her own. I have read all these things anyway on the computer concerning AS but when a specialist in the field tells you face to face to seriously prepare for this, it is quite shocking and out of this world. I kept telling myself, "you're not talking about my child".

Kendal was diagnosed in February 2008 and I can't believe I am still fighting denial in some areas with Kendal. Of course, I am extremely pleased and proud of her progress in the two years that she has been in therapy, but I guess I always thought in the back of my mind that maybe she would be healed. The doctor emphasized the importance of hope but didn't want us to be unprepared with the probabilities that we could be facing.

I am deeply saddened in a lot of ways.

I hate AS because of what it has taken from my daughter, but thankful for AS for making her who she is. Does this even make any sense?

The doctor had spoke more than once about this being a marathon not a sprint. I think he could tell that we are just tired. He emphasized the importance of me and James spending time together away from Kendal and I agree that we need to invest in us to better be there for Kendal. I have a major problem though asking for help. Both my mom and dad raised me to be independent and take care of my own business, so I have never been one to ask for much help (my dad might disagree with that statement!), but I will have to learn to let people in, because I am not sure how much more I can take at times.

The doctor wasn't all doom and gloom though. He really liked some of the things Kendal was doing - she was very sociable and maintained eye contact and was good with social cues. He strongly suggested we begin to work with a behaviorist. We will have to see if we can even fit that in our schedule in the future - at this point there is no time for it. Despite all the things that we again didn't want to hear, nothing has changed. Kendal is still the same Kendal despite the realization that she might never be miraculous healed - that might not be God's plan for her.

I guess when it all comes down to it I am not worried about Kendal. She has two parents that absolutely adore her and will make sure that she is always well taken care of. I think just letting go of some of our dreams for her, or maybe just changing some dreams we had for her. I continue to pray for peace and letting go of these stupid old dreams for her that I carry around in my head. My new dream for her should just be that she live a joyous and wondrous life. Now that's a good dream for our children.

A Busy Week

2008-12-13T08:03:00.002-06:00

This past week has been busier than normal with Christmas approaching. We have alot lined up in the next two weeks but I will try to stay diligent in posting new entries of what we're doing.

Speech Therapy went great both Monday and Wednesday because Kendal is making new and different sounds. This is truly a blessing and makes us so much more appreciative of any progress she makes. Physical Therapy also went great and Kendal really seemed to enjoy it more this week than she has in the last two weeks. We didn't have Occupation Therapy this week due to the snow/ice we received Thursday night/Friday morning. Both me and Kendal were glad for the break because we both got to sleep in. I got to sleep till 6:00 instead of 4:45. It was wonderful.

We have yet to get Kendal anything for Christmas. I'm hoping to get out today and do a little shopping. She is a little hard to buy for because she does not like a lot of "age appropriate" toys yet. It has been suggested that it is a good time to begin to introduce toys that encourage imaginative play like dolls, play kitchen, etc. I know that her grandmother is buying her a doll this year and I am anxious to see how Kendal reacts to it. I see little girls all the time carrying around their baby dolls and that has never been something that Kendal has been interested in. Hopefully now, she will engage in more imaginative play. Me and James have talked about possibly getting her a trampoline or something to bounce on. She is learning to jump and she really has fun bouncing. Beyond that, we have no idea what to get her. Typical girl I guess - hard to buy for!

New Progress!

2008-12-05T21:00:00.003-06:00

This week has been a slow week as far as entertaining activity. We have continued our daily routines as this week completely flew by. In the last 2-3 weeks, Kendal has made tremendous steps in her vocal abilities. She has finally discovered her tongue can move in all different directions (see video)! Of course this is a huge deal because we all know that until you move your tongue, you're not going to get many sounds. For the last several months we have been working with her to try to stick out her tongue (we actually encourage her to do this, I know it sounds strange). Not only that, she has begun blowing air while moving her mouth to start making the "ththth" and "dadada" sounds. Yes, this progress is truly amazing!

A time to give THANKS

2008-11-27T21:33:00.002-06:00

After reading another mother's blog, I decided to copy off of her idea of giving thanks for Angelman Syndrome. It is easy for me to point out the negatives associated with this disorder, but today I want to focus on all the positive unexpected things that have come out of this diagnosis.

Because of Angelman Syndrome, I'm thankful...

1) that I have learned just how amazing our creator is. After learning more about genetics, it is impossible not to believe in God.

2) that my love for James has grown even more because of the father that he has become.

3) that I learned that I'm a much better mother than I ever thought I could be.

4) that I have a child that truly loves life and loves to love others.

5) that I have become somewhat of an expert in organization and execution of tasks.

6) that I truly cherish every new sound that comes from Kendal's lips.

7) that God chose me and James to raise this amazing child.

8) that I appreciate all of Kendal's milestones for what they are, miracles. Nothing is ever guaranteed.

9) that I now have a passion for other families that have special-needs children.

10) that I now realize just how blessed we are.

Give thanks to the LORD, for he is good; his love endures forever.
-1 Chronicles 16:34

A Mini-Schedule

2008-11-26T12:00:00.000-06:00

This is something new we are trying, a mini-schedule. It was a recommendation from the behaviorist, so the speech therapist has helped me get started. It is simply just some pictures that show our nightly routine. We go down the list: Play Time, Bath Time, Brush Your Hair, Brush Your Teeth, Take Medicine, Drink Milk, Read A Book, and Go To Sleep. Once we finish an activity she participates by flipping over the picture before moving onto the next task. This is supposed to teach her about doing things, even things we don't like that we must do. She may not like Brushing her Teeth, but she sees that after we brush teeth we get to read a book. The behaviorist said that most kids respond well to seeing what is planned out and going through the routine. She has been very excited by the chart and we will keep you updated on how this works out.

Closure

2008-11-25T21:04:00.002-06:00

We finally have the last piece of the puzzle on Kendal's diagnosis. Dr. Charles Williams called me back yesterday afternoon after reviewing Kendal's full lab workups, and said that her definite mechanism is a "non-deletion imprinting defect". This cause (mechanism) occurs in about 3% of all Angelman Syndrome children. It seems that it is so rare that the Angelman Syndrome Foundation are unaware of any child in TN with this type of mechanism. I did however make contact with a family in Illinois whose son has the same type as Kendal. As most of you know, I am quite anxious to talk to other families.

This closure thing has been really nice because I now know all the information there is too know about how this happened. The doctor also confirmed that the recurrence risk is less than 1%. We often think of having another child and although it would be a total blessing to have another child like Kendal, it would also be nice to have a "normal" developing child. I hate to use the word normal because I'm not quite sure what it means in this case. I know that I have missed some milestones with Kendal that would be neat to see with another child. It's funny to think that although I have missed some of these things, I have learned and grown so much because of her. She has changed my life in ways I could never have imagined. I remain in awe of this gift.

Finally an answer......well, not really

2008-11-22T14:26:00.003-06:00

Friday morning I received an email from our genetic counselor. The email stated that the lab results were normal. Period.

I was very upset, but first let me explain what we were testing for.

Basically, there are 4 different mechanisms that cause Angelman Syndrome:
Deletion Positive
Uniparental Disomy
Gene Mutation
Imprinting Defect

This last test result was on the Imprinting Defect. Kendal has been tested for all these mechanisms and they have all come back normal.

We apparently are missing something. The doctors diagnosed Kendal off of a DNA methylation test which indicted that there was a particular defect with a particular gene sequence on her 15th chromosome. Because the methylation test showed abnormal, they should be able to isolate the exact mechanism which caused AS. Since we have tested for the different mechanisms and everything is normal, what am I supposed to do now but question the diagnosis in the first place.

What was so upsetting is the fact that after all these months (8 to be exact), I know nothing more than I knew in February when she was diagnosed. Even more upsetting was the fact that the genetic counselor sent an email with no call of explanation or guidance.

I, of course called Vanderbilt Genetics and left a detailed message to have someone call me. I then called Terry Jo Bichell (visiting scholar at Vanderbilt) to get her advise. I, of course, had to leave her a message. I then called Doris just to vent and thankfully she totally understood where I was coming from and my frustrations. THANK YOU DORIS!!

I then decided to call the Angelman Syndrome Foundation in Illinois to see if they could guide me of what to do next to get some answers - including does Kendal even have AS if they can't find the mechanism? They referred me to Dr. Charles Williams at the University of Florida (please see link http://www.peds.ufl.edu/divisions/genetics/faculty/williams.htm). They said he was one of the top experts on AS in the country and he can could probably point us in the right direction. I sent him an email briefing stating testing that had been done and questions of what to do next. To my utter disbelief, he called a couple of hours later to speak directly with me about Kendal. (At this point, I still had not received a call back from anyone in my own state). He seemed very interested because he said Kendal's situation seems very very rare. Remember, out of the cases where they receive an abnormal DNA Methylation, approximately 95% of the cases are deletion, UPD, or mutations. He thinks that the Imprinting test we just had only tested for a deletion in the Imprinting Center not a defect. Just off of what I told him, he thought that we needed to look closer at the Imprinting Center for a defect and not a deletion. He asked if I could fax all of Kendal's labs down so he could take a look at what tests have been run and figure what is the next best step.

CAN YOU BELIEVE THIS? A doctor that has never even met us seems more interested in helping us than any of the doctors we have personally seen. I expressed my frustration with the doctors up here and he reminded me that Kendal is very different from most children with AS and that they probably have not had a case like hers and do not know what steps to take. I felt like a huge weight has been lifted off my shoulders after talking with him. I was reminded once again that GOD always provides.

I will fax the lab work to him Monday morning and he said he would try to review it and get back with me either Monday afternoon or Tuesday.

Later on my way home, I finally received a call from Vanderbilt Genetics. Another genetic counselor called and tried to help me. I was on the phone with her for over 30 minutes and I'm not sure even what we discussed. She was saying one thing, I was trying to say another. One thing I have learned is that genetics is a very different field and counselors or geneticist aren't always the easiest kind of people to converse with. I think the lady did not understand why I wanted an answer. She felt like Kendal has AS so why bother with any additional testing. Well for a couple of reasons I explained: recurrence risk, closure of understanding what happened to cause this, final confirmation of diagnoses, and reaching out to other families with the same issues. The genetic doctor that we have seen has left Vanderbilt so they will be reassigning me to another doctor (one of two doctors that has more experience with AS). The counselor felt like I needed to come back in fairly soon to discuss what we are looking at. I explained that my frustration is the fact that I don't feel like anyone is trying to figure out what is going on. I would think that if her type is so rare that they would be inquisitive enough to be proactive in connecting the dots. Someone is supposed to call me Monday to come back in. I almost felt bad for the lady when we got off the phone. She did not know anything about our case and here I threw everything in her face along with a bunch of criticism. She was as helpful as she could be and maybe she will pass on my frustrations to someone that can help me.

Still have not heard back from the behaviorist. I called TEIS on Wednesday and she stated she still had not received a report. It will be 2 weeks on Tuesday that we have been waiting for a report that should have been completed within the week of the evaluation. I dare TEIS to deny coverage because Kendal is not autistic. At this point, I am ready for a fight. BRING IT ON!

Still Waiting

2008-11-18T21:12:00.004-06:00

Still waiting on the latest round of lab results concerning the "imprinting defect" genetic mechanism they are testing on Kendal. The following are some notes I found on the Angelman Syndrome Foundation website regarding this possible mechanism that Kendal may have...

A fourth class of AS individuals (3-5% of cases) have inherited chromosome 15 copies from both mother and father, but the copy inherited from the mother functions in the same way that a paternal chromosome 15 should function. This is referred to as an “imprinting defect”. A small percentage of AS individuals with imprinting defects have very small DNA deletions in a region called the Imprinting Center (IC) 14-17 but all AS individuals with IC defects have abnormal DNA methylation changes in this region. The IC is located some distance from the UBE3A gene but it is still able to regulate UBE3A by a complex mechanism that is the subject of intense research. In some cases, AS caused by imprinting defects can recur in more than one member of a family. It has recently been discovered that assisted reproductive technologies (ART), such as in vitro fertilization (IVF) or intra-cytoplasmic sperm injection (ICSI), are associated with a few cases of AS due to the non-deletion type of IC defect.

Individuals with AS due to IC defect can have either inherited this mutation from a normal mother or have received the mutation spontaneously (i.e., not inherited). In the former case, the theoretical recurrence risk is 50% and in the latter (i.e., spontaneous mutation) the risk is believed to be less than 1%.

Genetic Mechanisms - An Easy Illustration

2008-11-15T09:00:00.000-06:00

I have read a ton of information on Angelman Syndrome and I will tell you I still struggle to understand the complexities of genetics. On the new www.angelman.org website, I found a very easy to understand illustration on the different genetic mechanisms of AS. Please see the following link.

http://www.angelman.org/healthcare-professionals/genetic-mechanisms-of-angelman-syndrome/

They believe that Kendal has the "Imprinting Defect" and they are currently running DNA testing to confirm the defect. The blood work was done about 4 weeks ago and I'm not sure what the turn-around time is for this kind of testing. I think it's so weird because Angelman Syndrome is so rare, and then to have a child that is even more unique because she is not like most children with AS. Kendal is literally 1 in a million.

Don't Put This Off

2008-11-14T11:21:00.007-06:00

I wanted to remind everyone that with the years flying by it is so important to get pictures made. It's something that we all want to do but never seem to have the time. Please, if you haven't had any pictures in a year, stop everything and get some pictures made. It is so worth the time and energy to capture our lives and memories.

This past weekend, we had some professional pictures taken. It's something we have talked about doing for a long time and just never got around to it. So glad we did though. The pictures turned out so well!! Here are just a few of my favorites.

To PEC or not to PEC

2008-11-12T20:36:00.003-06:00

The behaviorist came over Tuesday morning to do an evaluation on Kendal. She was very pleased with Kendal's comprehensive level. It did not take long though for her to give feedback stating that we very much needed to get Kendal on a communication system. Although the signs are great and we still want to push for additional signs, at this point, the behaviorist felt like she needed additional outlets to express herself. The basic system using pictures is called PECS (Picture Exchange Communication System). Simply enough, it's just a system of getting her to use pictures to express her wants and needs. The frustration and aggression that Kendal has been exhibiting is just a result of her unable to communicate and this is the only way she knows to act out or show dislike.

PECS: http://www.pyramidproducts.com/pecs.html

We tried this system last year (with a different speech therapist) and Kendal did not seem to respond to it. Of course, there is no telling why. It could have been that she was not ready for such a system at the time. The behaviorist also wants to help get Kendal through her therapies by teaching her: first_________, then___________. The goal is to teach her that she might have to do something she doesn't want to do, but after that we can move on to something she does like. We will begin to work with our speech therapist in trying this out next week. The behaviorists said she recommended at least a few visits with us to help show us how to introduce and encourage the system and also help us learn different techniques in dealing with Kendal's behavior. The state has already said they will only authorize this treatment for children diagnosed with Autism (can you guess how mad I was after hearing that?), but I will wait to see what the behaviorist completed evaluation says and then I will fight TEIS for services. I believe my insurance would cover it all except I would be responsible for any co-pays. Normally TEIS would cover the remaining expenses. Life has been boring lately - I'm almost looking forward to a fight. They don't know who they are messing with.

We have physical therapy in the morning and I hope Kendal will be back on track. She missed 3 weeks in a row of PT due to sickness and vacation, and last week when we started back up she was very frustrated acting throught he whole thing. And that is very unusal. I thought maybe she had forgotten Amber but I don't think that was it because she kept trying to kiss her (sucking up so she doesn't have to work). Who knows?

Things we have been considering...

2008-11-10T19:50:00.002-06:00

A lot has seemed to go on the last week or two concerning possible changes in Kendal's IFSP (Individual Family Service Plan). We have been eagerly awaiting the evaluation of Kendal by the behaviorist. As of this morning I still had not heard from anyone so I called the company that is supposed to handle this stuff and I actually received a call back stating they would be at the house tomorrow morning at 7 to evaluate Kendal. The behaviorist was not familiar with Angelman Syndrome (surprise, surprise) and said she would look it up tonight to try to get somewhat familiar with it. I thanked her for that because I find that I spend quite a bit of time educating people about the syndrome and believe me when I say I have no business educating people on anything. I will update you concerning the recommendations the behaviorist gives up tomorrow.

We have again lost our Service Coordinator with TEIS. We are now starting on our fourth coordinator that we have had in 18 months. I image it is not a very fun job with mothers and fathers like me having to continually call to get things handled regarding our children. TEIS has been helpful in many ways, but lately I have felt that the last thing they are concerned about is helping the family, which from what I understand used to be their main focus. Kendal can only remain on their program till March 2009 and at that point, services (therapies) are transferred to the public school system. I have been warned by therapists and doctors that the quality of therapy is nil and that speech and occupational therapy will both need to be handled privately where Kendal can get the attention she needs in these capacities.

We were looking at enrolling her in Rutherford County School system in March (if we're still here) for one day a week, for a 30 minute session. The purpose of this would be to begin trying out a communication system for Kendal. The school system would provide one for her that we could use outside of her therapies. At first I thought this was appealing because I want to give her anything I can that may help her communicate with us. However, I spoke with Suzanne (our speech therapist) and she did not really think that Kendal was ready for something like that just yet. I then began to think about the school system and the sometimes ill-qualified people that work with our children. I am not too sure that the person in the school system would be adequately trained to provide such a specialized service. I think we will wait till we move to Mount Juliet and maybe explore this in another 6 months to a year. Kendal's progress is slow to me and of course I constantly wonder if she will ever talk. Suzanne seems determined that Kendal will talk despite the diagnosis. I don't want to be negative but I also don't want to hang all my dreams on her talking. It's something that I pray for, but who knows what God has in store for her.

On a side note....TWO more showings on the house over the weekend. Still no offers.

A Lazy Sunday

2008-11-10T19:40:00.002-06:00

After our trip from Indiana, I took this picture of Kendal the following day - Sunday. What is unique about this picture is that Kendal is not the kind of child to just fall asleep in the middle of the floor while playing. This just demonstrates how exhausted she must have been after our vacation week!

Must See!!

2008-11-10T19:33:00.004-06:00

The Angelman Syndrome Foundation has just relaunched their website! They have totally redesigned the website making it much easier to find information within the AS community. Please check it out when you get the chance.

http://www.angelman.org/

Just to fill you in

2008-11-06T20:26:00.003-06:00

I have learned that this blogging thing is similar to exercising - once you get out of the routine, even for just a couple of days, it's really hard to get started again.

Our vacation was really great this fall because we didn't stress ourselves out about trying to pack in a lot of things on our days off. The first several days we spent time around the house. We voted early, went to a matinee movie, ran errands, and laid on the couch watching TV. I will tell you - this was a dream come true.

Kendal maintained her Speech Therapy on Monday and Wednesday. We talked with Suzanne (Speech Pathologist) about whether Kendal will need a communication device since she is doing so well with sign language. She did state that Kendal will still need a communication system (in case she doesn't start talking, of course!) because even though the signing is great, it will not be enough to function out in the world. If she is in school, she needs to be able to communicate with the teachers and fellow students and not everyone that she comes into contact with will know signs. I had never really thought of it that way. I guess I just assumed that I will always be by her side. I want Kendal to be a strong independent woman and so as we journey through this course we will determine her needs as we see fit.

Last Thursday, we headed up to Crawfordsville, Indiana to visit my sister Katie, her husband Mike, and their two beautiful daughters Marilyn and Olivia. Thursday night we had a great dinner at The Beef House. Friday, we had the opportunity to pal around with Katie and meet some great people, including her boss David and some friends at the local coffee shop. James headed back to the house for a nap while me and Katie attended Olivia's Halloween Party at school. That was really fun!

Before we knew it, it was time to get the costumes on for trick-or-treating Friday night. We went out for just a little bit with Kendal and the girls before heading back to the house to hand out candy. Now Katie had tried to prepare me for what was to come, but NEVER and I mean NEVER had I seen or could have imagined so many trick-or-treaters. I think everyone in Crawfordsville drops their children off on Main Street (where Katie lives). People were lined up single-file in 2 separate lines up her walk-way. You would have thought we were handing our crack to a bunch of addicts. It was totally crazy but very fun. Me, James, and Kendal are not used to all the running around so we were happy to head up to bed that night due to our exhaustion.

We came back to TN on Saturday and even though our trip was very short to Indiana, we were so happy we could go visit them. On the way back through Bowling Green, KY we stopped off to see James, Debra, and Destiny (James' father, mother, and niece). It was really good to see them too although the visit was under an hour. It was getting dark and we wanted to be home so bad. Luckily with James' family now living in Kentucky we will get to see them more often.

This week has been a major adjustment trying to get back in the swing of things. Work has been especially busy and I am trying to get caught back up on the different things going on with Kendal (will post an update on that later this week). With everything going on in the world, we were truly blessed to have a week to ourselves. God is so good to us!

Vacation Pictures

2008-11-05T06:13:00.001-06:00

Our Masterpieces (or so we think)

2008-10-26T14:14:00.004-05:00

A Great Fall Day

2008-10-26T13:51:00.008-05:00

Our first day of vacation started with an early showing of the house at 10:00. We decided to head out to the pumpkin patch to let Kendal pick out the pumpkins. I think she was a little overwhelmed by the selection, but we managed to get two big pumpkins and a small one just for her.

When we got home, we decided to jump right in to carving out the pumpkins. Kendal was frightened of sticking her hand in the pumpkin to help clean it out. She literally was about to jump out of my lap to get away from the situation. It often takes her a while to get used to foreign things. She acted the way about playdough for 6 months before she would actually hold it and not freak out. Anyway, me and James got one large one cleaned out and then the tiny one for Kendal. James had gotten one of the pumpkin carving kits where you can do cool designs. We chose a witch standing in front of her kettle pot. It turned out so good especially when it is lit up! I did the small pumpkin for Kendal (no template required).

We had such a good time!

Vacation is Finally Here!!!

2008-10-24T20:49:00.000-05:00

There were times when I wasn't sure if I would actually make it to vacation week. The last couple of weeks have been especially trying and I am so happy to have a week off from work.

We hope to go to a pumpkin patch over the weekend and plan on spending the first half of the week here at home. On Thursday, we plan on traveling to Indiana to visit my sister Katie, her husband Mike, and their two beautiful daughters Marilyn and Olivia. I am so looking forward to Kendal spending time with her cousins - she adores them and they adore her.

Signs and Sounds

2008-10-23T19:33:00.006-05:00

Our little girl is learning new things everyday. I encourage anyone to look at some of the first videos I posted of her and you will see a marked difference in her vocalizations in a short amount of time. She continues to amaze us...

Getting Back to Normal

2008-10-20T20:55:00.003-05:00

Besides the few remaining blisters that are healing, we are slowly getting back to our "normal" life. We haven't had speech therapy in 2 weeks - the first week was Suzanne's vacation and the second week was when Kendal was sick. Kendal really put on a show for Suzanne this morning using several of her signs without prompting. I am so proud of Kendal!!! In the next day or two I will post a video of some of her signs so please check back. I know everyone seems to enjoy the videos.

After therapy this morning we headed to Vanderbilt for an appointment with Dr. Moulton (gastroenterlogist). He is an awesome doctor mainly because he is such a great communicator. When he comes in the room, he is focused on us and not anything happening across the hall. With all the doctors we have gone to, I think he is one of my favorites because he is so attentive. He is leaving Kendal's dosage on the Prevacid up to us. Of course, we want to eventually get her off the medication for reflux, but he advised us to play with lowering it at our own discretion.

After that, we headed down to the lab for bloodwork. Kendal did really good considering they took 3 vials which seemed like it took forever. There was a mother holding her baby who couldn't have been any older than 3 months. The baby was screaming throughout the ordeal. When finished the father came and took the baby and the mother totally broke down. I felt so bad. I know what it's like to sit and listen to your baby scream in pain or fear, and not be able to do anything about it.

Kendal went back to her daycare today and didn't seem to have any problems getting back into the routine. She loves her teachers and runs up to them to be picked up. She totally knows how to work it. She has them eating out of her hands.

On a side note - when I was going to the doctors office this morning there was a small boy by the elevators in the parking garage leaning on his mother. As we waited for the elevator, the child continuously vomited in a bucket his mother held. It was obvious that he was a cancer patient from his bald head, very weak body, and paleness. It is always so easy for us to take things for granted. I get frustrated because parents take for granted that their children can talk to them. I needed a wake-up call that I too take for granted that my child is a healthy and happy girl. I thanked God right there for all his blessings on us. We all are so fortunate in so many ways.

A Slow Recovery

2008-10-15T21:56:00.002-05:00

I thought Kendal was slowly on the mend but now I am having some doubts. This afternoon when I got home I took her temperature and it was back up to 101.5 - much lower than before but I thought she was done with the fever. She has had 6 doses of her antibiotic since Monday and if i don't see a marked improvement in the next 24 hours I will take her back to the doctor before I let her go into the weekend with no relief.

She is completely miserable, still unable to eat anything besides pudding/ice cream and she is not taking in much fluids. Everything appears to burn when it is put up to her mouth. I just feel so awful. I wish it would hurry up and run its course.

She has only been in the bed for 90 minutes so far and she has already woken up twice. She cried out, yelped, and moaned and then fell back asleep. This will probably be another hard night for her.

Please say a prayer for her....

Sick Again

2008-10-13T20:47:00.004-05:00

(Hand, Foot, and Mouth Virus)

Yes, Kendal has gotten the crud again. Her fever began yesterday with the highest temperature hitting 103.8 last night. Nana watched Kendal today because Bob (boss) is off this week and I'm by myself at work. I met Kendal and Nana at the doctors office to see what was going on. Low and behold, it was....

anyone?

anyone? (was thinking of Ferris Bueller)

STREP THROAT. AGAIN!!!!
She also appears to have a coxsackie-virus in and around her mouth. She has several little blisters on her lips and blisters on the tip of her tongue. Kendal, as always, is in pretty good spirits despite the fact that the doctor said the blisters were painful. I did get her to eat Cream of Mushroom soup tonight, along with 1/2 a crescent roll, and some ice cream. Her temperature before bedtime tonight was 100.0 - hopefully with the antibiotics, she will be feeling better soon.

She is staying with Nana again tomorrow to be completely spoiled. I owe a debt of gratitude to Doris for always helping out in these situations. Thank you so much -

Another Pity Party - Will they ever end?

2008-10-10T20:54:00.005-05:00

Kendal Chowing Down Tonight!

She's getting so big...who do you think she looks like? Me or James???

I struggled a little today in my very own little pity party. Most days are so great but every now and then I let my mind wonder and that is never good! I was listening to a child today a little older than Kendal. The child was talking up a storm and it really got me thinking. I know that Kendal is very smart but because I never hear her say anything I guess I sometimes forget that she must have all kinds of thoughts running through her head. Now, everyone that knows me knows that I like to talk (Doris, Shirley, and Teresa have the unfortunate blessing of knowing this first hand). I always feel better to get something off my chest, and I started thinking about my baby. She must have all these thoughts and feelings and can't tell anyone. Just thinking of that really hurt me. I can't imagine having so much going on in my head and not releasing it in some way. I can't get this image out of my head of a mime yelling out but no one hearing him. Is that going to be Kendal? Will she want to talk or because she has never done it, will she even know that she isn't talking like everyone else?
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I get really upset with myself that I have these pity parties occasionally. I hope I'm still just in the "grieving process". Kendal was just diagnosed the first week in March and it has been alot to swallow at times. I still have hopes for the unknown future, but I question what she will be capable of - will she be able to graduate from high school? from college? will she get married? will she live independently? I know my questions aren't different from any other parents, I guess I'm just wondering how this Angelman Syndrome will affect the rest of her life. I hope I get to the point where I do not have the pity parties or feel sorry for her. I know that she is God's child and he has much more in store for her than I can imagine.
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On a lighter note, I had Kendal in my lap tonight as she was drinking her milk and I was lightly caressing her stomach. When I would stop, she would grab my hand and start moving it. When I would start rubbing her belly again, she would then release me. I don't know why I worry so much - this child is very much in control of this household!!