A Good Reminder

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

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

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

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

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

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

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

Ok Seriously, is it June already?

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

Circle Time

Kendal with AnnMarie (her teacher) running through the sprinkler

My Cutie-Pie

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

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

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

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

Couldn't be prouder!

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

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

Congratulations Katie!!!

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

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

Yes, we're still here!!!

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

Kendal loved walking!

Team Kendal!!!

Go Kendal!


Nana, Kerrie, & Grandpa

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

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

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

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

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

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

Happy Belated Mothers Day!

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

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

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


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


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

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

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

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