Look How Much She's Grown

I just ran across this picture and couldn't believe how much Kendal has grown in just over a year. I truly wish time would slow down just a little....

(A shout out to Jerry and Lynn Saunders who got Kendal a Big Easter Basket last year that had these glasses in it)

Last Day at "TT's"

These are some pictures of Kendal's last day with Teresa and her friends, Jordan and Nate. Although I miss seeing Teresa (Baleah and Kassidy too!), I know that Kendal will continue to thrive at her new preschool. I know I was blessed to have Teresa watch Kendal for the first two years of her life and I know that she was well taken care of and very much loved.

Today was even better than yesterday at the new preschool - she actually napped on the mat for about 40 minutes. I had the teacher give her melatonin today to try to help her sleep. Out of the 9 hours that she was in her bed last night, I don't think she slept any more than 5 hours. It seemed like she was up all night. James did a great job getting up with her. He got little sleep last night and worked a double-shift today. I don't know how he functions with so little sleep and he mentioned that Kendal just might get that from him.

Speaking of sleep - I've got to go to bed. Good Night!

A Whole New World for Kendal

Kendal started her preschool daycare this week and it literally is a whole new world for her. I, of course, was a nervous wreck on her first day. I think I called 4 or 5 times during the day to check on her. She did very well and seemed to adjust well considering she was surrounded by strangers and in a different environment. Today was even better for her. So far, the only problem has been nap time (for those that know about Kendal's sleep issues, this is NO surprise). Today she only napped between 5-10 minutes and cried heavily during this time. My heart hurts to even think about it. I guess it is just a mother's instinct, but I wanted to run down there and hold her when I heard her crying over the phone, but I know that she needs to adjust and even though it's not easy it is something that we all have had to do at some point in our lives.

What impressed me so much was that the owner (Karin) of the daycare made a point to educate all the staff about Kendal and her condition. She also made poster boards that serve as communication aides to use with Kendal. This is something that we had tried in the past during speech therapy and she never really caught on. Now that she is a little older, I think she will respond much better to this form of communication. Karin went above and beyond to accomodate Kendal and they all seemed so excited to have her.

We are still awaiting the results on the latest lab tests to determine if Kendal has a mutation. We also scheduled her EEG August 12th @ 7:30pm. The test is for the research study but also the neurologist. He did state that EEG's usually come back abnormal with a child with Angelman Syndrome but Kendal seems to break all the rules - so who knows. If there's one thing I've learned, I can never underestimate what God can and will do in Kendal's life.

The appointment with the Neurologist.....

Well, we finally had the appointment with the neurologist and everything went really well. My stepmother, Doris, came to the appointment with us which was a blessing in itsself. Without her, I would have gone crazy after the 1 hour and 20 minutes in the waiting room before getting called back. Kendal was as amazing as usual. She was great the entire time and thoroughly enjoyed checking out all the new people that were coming into the office. She was even trying to kiss a little boy and girl in the waiting room that she was playing with.

The wait was worth it though because this doctor was actually pretty familiar with Angelman Syndrome. We discussed seizures, but since Kendal has not had even as of yet he just went over the different types that they usually have and what they look like. He said about 80% of the kids with AS have seizures.

He was really understanding about the sleep problems that Kendal has. She is currently taking Melatonin (1.5ml) before bedtime, and it usually eases her into sleep. It has been wonderful but we are still having periods of her being up throughout the night. He told us to double the dosage and that I could even go up to 6ml/24 hour period. If that didn't work, he said that he would probably put her on a prescription medication to help. This was so nice to hear. I am used to doctors telling me that she's just going through a phase and that nothing is really wrong with her. Now, I go to a doctor that tells me this is VERY common for kids with AS and that he will help me with the problem. What a relief!!!

We won't have to see him again for a year unless something changes. We have an EEG scheduled in August and that will complete everything the neurologist needed at this time. Now if we could just get the next results on the genetic testing to determine if a gene mutation caused this diagnosis.

Tuesday evening Kendal saw Donetta. She put one shoe on Kendal's foot, and asked Kendal to find the match (it was clustered with several other pairs of shoes), and she found the match correctly both times. I was so happy and surprised. I had not wondered if she had this skill as it had just never come up in our daily life and I was pleasantly surprised that she had no problem doing this - and doing it all on her own!!

Wednesday morning we were back on schedule with Speech Therapy. Kendal again did great. Suzanne taught her the "choo-choo" and "go" sign and Kendal copied them both - and these are not easy!!! So next time you see Kendal, be sure to ask her to do these signs. She has been soaking it all in and now she is really beginning to spit it all out.

This morning was Physical Therapy and again all was well. Amber works Kendal so hard but does it so skillfully. Kendal doesn't even realize it because Amber makes everything so fun. She worked on jumping and extending her upper body. It's funny to watch Kendal do all these things because not to long ago, she couldn't hardly do anything. I first took her to Amber when she was only 13 months - now she's my little girl, not my little baby anymore.

Tomorrow morning at 6:30am she has Occupational Therapy (I dread this early appointment all week, every week). After that, we will be done until the following Monday. I love the weekends!!

Tomorrow is also the last day that Kendal will be with Teresa (our beloved friend and babysitter). It is very upsetting in the fact that I won't see her everyday, and that Kendal won't be totally spoiled by her, but I know this is a good thing for Kendal and her continued growth. I will be posting some pictures of her last day with Teresa over the weekend.

It's late - time to go to bed.....

The Business of Being Born

Ever since having Kendal, I have found myself intrigued by the childbirth process - much more so than when I was pregnant! Since then, I have been learning more about childbirth and what it has become in this country. Ricky Lake, yes that Ricky Lake, has made a documentary concerning these issues called "The Business of Being Born". I was immediately drawn to the movie and anxious to watch it. ***I put the movie trailer on the side bar so please check it out when you get the chance. After my experience with Kendal, I almost feel like I missed out on what the birthing process was. If we do decide to have more children, I will actively participate in the birthing decisions that will be made. After all, this birthing thing isn't rocket science. Didn't God equip us perfectly for this task?

Our weekends have been so booked lately that we haven't had much time to ourselves. So this past weekend, we made the priority to take Kendal to The Discovery Center here in Murfreesboro and she had a really good time. She ran around and enjoyed all the hands-on exhibits. Of course, we didn't have a camera but I have a feeling that we will make several more trips in the near future.

We will be going to the neurologist next Tuesday just for an initial consultation. The geneticist automatically makes a referral to see one since Angelman children have a very high chance of developing seizures. So far, we have again been blessed because Kendal has not experienced this common characteristic of AS. Doris, my step mom & priceless confidant, is going with me. She is a pillar of support and I really don't know what I would do without her.

Kendal is also reaching another milestone - she will be beginning preschool on July 28th. I am terrified and excited at the same time. Believe me, you will be getting more updates about this situation as it unfolds.

A Slow Week

Not much has been going on this week. Kendal had 2 therapy sessions cancelled this week due to therapists not being available. I will admit that it is actually nice to have a break sometimes from it. We had physical therapy this morning at 7, which means I had to wake up at 4:30 this morning. AHHHHHH!!!!

We are blessed to have Amber, the physical therapist, working with us. She started seeing Kendal in April 2007, and has seen so much of Kendal's progress. I had a doctor tell me several months ago that therapies have in no way been proven to help advance a child, and that I should probably consider doing something else with my time. I will tell you that Kendal's progress is by the Grace of God and the wonderful therapists he has sent into our lives.

Reseach Study

Kendal was recently asked to be part of a research study conducted by the Vanderbilt Kennedy Center for Research on Human Development. We went ahead and took advantage of this opportunity because not only will this study help advance the findings on Angelman Syndrome, but also they will comprehensively track Kendal's progress for the next 5 years. They have also asked to use Kendal's picture on the front of the brochure for the study. What can I say? My baby's beautiful.....

James took Kendal in for the first evaluation that tests her using the Bayley Scales of Infant & Toddler Development, Preschool Language Scale, and Vineland II-Adaptive Behavior Scales. Her overall scoring clustered in the 12-16 month range. The psychologist performing the tests told James at the appointment that Kendal was so much more advanced that the other Angelman children she had worked with, even mentioning that Kendal was the highest-functioning that she had seen.

Of course, this did not surprise us after we attended the Walk-a-Thon in May. I think we were shocked to see some of the more severe cases of AS. To see Kendal, most would notice nothing different in comparison to other children, besides her verbal communication. She now has several signs down and is trying to learn how to use them to get across her wants and needs. We love our speech therapist and she is 100% dedicated to getting Kendal to talk. She more than makes up for any doubt I let in my head.

***NOTE to any of those that know about the duct tape situation - we have learned that Kendal cannot be trusted left to her own devices at any time. I will now be carrying it with me at all times!!

The House

1763 Potters Ct.

Dining Room

Kitchen

Master Bedroom


Now granted it's our house, but I think this house it so pretty. I will admit that I was surprised the first person that looked at it just didn't drop to their knees and declare that we must own the house. OK, I am being a little dramatic.

But still after 6 weeks on the market, we have yet to get an offer and decided to drop our list price to $204,900. We have had a total of 3 showings and an open house. All feedback has been extremely good, however there is just so many houses to compete against. We have just decided to see what happens at this point with the price lowered and simply play it by ear. I would love to move to Mount Juliet, but in the worst case scenario we will just stay here if we have too. We are blessed that we are not forced to move due to financial reasons, and if we must wait it out, we will.

Hopefully, with the price drop we will see some new activity and we will keep you updated!!

This is a new recipe I made for a July 4th cookout. It was awesome!! I don't think I have ever seen James so proud of me. I highly recommend you give it a try and please let me know how it turns out.

Banana Pudding Pie
----------------------
1(12-oz) box vanilla wafers
1/2 cup butter, melted
2 large bananas, sliced
Vanilla Cream Filling (SEE BELOW)
4 egg whites
1/2 cup sugar

1. Set aside 30 vanilla wafers; pulse remaining vanilla wafers in a food processor 8-10 times or until coarsely crushed. (Less sophisticated people like me might just throw them in a zip lock bag and smash them with a mallet!!) Stir together crushed vanilla wafers and butter until blended. Firmly press on bottom, up sides, and onto lip of a 9-inch pie plate.

2. Bake at 350' for 10-12 minutes or until lightly browned. Remove to a wire rack, and let cool 30 minutes or until completely cool.

3. Arrange banana slices evenly over bottom of crust. Prepare Vanilla Cream Pudding, and spread half of hot filling over bananas; top with 20 vanilla wafers. Spread remaining hot filling over vanilla wafers. (Filling will be about 1/4 inch higher than top edge of crust.)

4. Beat egg whites at high speed with an electric mixer until foamy. Add sugar, 1 Tbsp. at a time, beating until stiff peaks form and sugar dissolves. Spread meringue evenly over hot filling, sealing the edges.

5. Bake at 350' for 10-12 minutes or until golden brown. Remove from oven, and let cool 1 hour on a wire rack or until completely cool. Coarsely crush remaining 10 vanilla wafers, and sprinkle evenly over top of pie. Chill 4 hours.


Vanilla Cream Filling
---------------------
3/4 cup sugar
1/3 cup all-purpose flour
2 large eggs
4 egg yolks
2 cups milk
2 tsp. vanilla extract

1. Whisk together first 5 ingredients in a heavy saucepan. Cook over medium-low heat, whisking constantly, 8-10 minutes or until it reaches the thickness of chilled pudding. (Mixture will just begin to bubble and will be thick enough to hold soft peaks when whisk is lifted.) Remove from heat, and stir in vanilla. Use immediately.

**If you're a big fan of vanilla wafers (and I am), pick up an extra box, and tuck some into the edges of the meringue before baking.

ENJOY!!

Rhonda and Shirley
- Thank you so much for your words of encouragement. I would like to take credit, but credit is due to God who has provided me all the tools to continue doing all we can do to help Kendal. God has chosen me to be her biggest supporter, comforter, and warrior. What a honor!!!

Never would I have imagined that I could have such a beautiful child. One of the characteristics of Angelman Syndrome is the extremely happy temperament. Kendal literally lights up wherever we go. It's funny because she is so used to people looking at her and coming up to her that when somebody doesn't, she gets downright irritated. It's the funniest thing to see!! If she was only talking, I'm sure she would say, "Why aren't you looking at me. I'm such a doll!"

We are still eagerly awaiting the call from the geneticist concerning the last tests that were completed. From what I have gathered, most children (70%-80%) with AS have a deletion positive form - which appears to be the most severely affected children. Approximately 3%-5% have what they call an imprinting defect that causes Angelman Syndrome. About 2%-3% have an Uniparental Disomy (UPD) cause. And the remaining amount appear to be caused by some sort of gene mutation. We are certain that her AS was not caused by a deletion or the Uniparental Disomy. The geneticist is supposed to go over the last testing that ruled out UPD, and advise us of the next round of testing. The testing is to help us determine reoccurence risks in another child.

It's wonderful to have access to so many great doctors at Vanderbilt Children's Hospital. Kendal currently has 5 specialists - Neurologist, Psychologist, Geneticist, Child-Developmental Specialist, and a Gastroenterologist. (It's a complete nightmare to keep up with them!) The blessing is that we have excellent health insurance and access to pretty much any doctor we want to go to. The down-side is that because they are specialists , they are extremely booked, as people travel from out of state to see many of these doctors. Regarding the geneticists, it has been 6 weeks since her testing, and I haven't yet spoken to our genetic counselor. I want to wring their necks sometimes, but overall we are just lucky to have such good (but busy) doctors who see Kendal.

I wanted to let everyone know about the research study that Kendal has just gotten involved in and the great feedback we have already received on it. Stay tuned for my next post!

***I want to note that I am in no way an expert of any of the information on Angelman Syndrome. I am trying to learn all that I can as quickly as I can. If I have misspoken on any of the medical information, I apologize.***

Hope Everyone had a Happy and Safe July 4th!!

We had a great 4th spending time with our close friends, Mark, Shirley, and their children. Mark and Shirley smoked a Boston Butt and made the best cowgirl beans I've ever eaten. I brought Deviled Eggs (which we forgot to take out of the fridge to eat!!), Strawberry Cupcakes, Banana Pudding Pie, and Macaroni & Cheese. The pie seemed to be a big hit with everyone which I was relieved to hear. It was the first time I made it, but I got the recipe out of an old Southern Living Magazine so I should have known it would be great. If anyone wants the recipe let me know and I know post it in the next couple of days.

Kendal seemed to thoroughly enjoy all the fireworks. This totally shocked me because she has never been around them before. She had NO problems with the loud popping and got so comfortable she laid back on her daddy to get a better view of the sky above her!!

Tonight Donnetta (who is quickly becoming one of my good friends) came over to play with Kendal. She worked with Kendal on stacking boxes, then we went over some goals that we have for her progress, and discussed frustrations that we have been having. Most of these frustrations are strictly related to her being a typical 2 year old!!

After giving her a quick bath and duct-taping her diaper on, she was ready to crash and now so am I. We have an early day tomorrow with speech therapy at 7:00am.