Early Christmas for Kendal!

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.

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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

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

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

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

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

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

Excited About This!

http://www.bellabash.org

A Great Fall Day!

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

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

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

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!!!

Changes Over the Summer

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

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???

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 Angelman Walk-A-Thon

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!!!

Making Myself Promises

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!

Finally Some Great Weather!

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!

Special Education Week

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.

March Madness

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

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!"

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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

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!

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?

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

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!

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

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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?

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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.

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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?

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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.

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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!

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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.

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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.

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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.