Foreign Feelings

Today was unusual, not for any specific reason besides the fact that I began to think more about Kendal's condition and how she might seem a little different from her peers. As much as we have going on with the therapies and doctors appointments, I sometimes forget that Kendal is different in her own way. Because this crazy schedule is all I know, I forget that not all children have to go through these things to gain new skills. I guess I just don't pay much attention to Kendal's differences anymore (1) because it is usually a waste of time and (2) it will drive you totally crazy. But what got me thinking this morning was the sweetest little act of kindness....

I took Kendal to daycare this morning and she is still somewhat struggling with the drop-off procedure. She cries and I feel awful but of course after I leave I know that she does fine. As I was trying to say good-bye this morning, a beautiful little girl in Kendal's class came up and said, "Hi, Kendal". It was so sweet and so thoughtful to greet Kendal when she obviously was struggling with adapting to her new daycare. I went ahead and left for the day and continued to think about the little girl that said Kendal's name just as clearly as I do.

I think I forgot to some extent that children that age have begun to talk. Now don't get me wrong - I did not feel sad. I just felt weird. This feeling was totally foreign to me. Nothing I could specifically put my finger on. I guess just a true realization that Kendal is different. A true realization that I don't know what the future holds for Kendal, or what God has planned for her, or the magnitude of how she has changed my life in ways that I cannot yet understand. I long to hear Kendal talk. To say, "Look, Mommy" or "I Love You". Whether she says these things in her life or not, it will not change the enormous gratitude and love that I feel for God who has blessed me with this child. It truly, truly humbles me...

Kendal's EEG

How the Night Unfolded...

It was a long night, but it's finally over and done. We got to Vanderbilt about 7:30 last night and wondered around for 15 minutes trying to find where we supposed to be. I had completed a consent form and forwarded it to the lady in charge of the research study and she had forgotten to drop it off at the Clinical Research Center and they obviously could not do anything until they had the signed documents. After several phone calls and scurrying around, we ended up logging into our email at home and printing another consent form off and resigning. Finally, at 9:15, we began the test.

As you can see from the photos, Kendal tolerated the wires very, very well. Once we got her all hooked up (with over 40 sensors), I got in the bed with her and tried to get her to go to sleep. She would begin to doze off and then she would startle herself and wake back up. I promise she must have done it 15-20 times. I was really glad that she did this during testing because I have always had a little concern over this and it also may explain why she has had sleep issues all along. After about an hour, I switched places with James and he took over. Of course with her daddy, she did much better and they were happy with the amount of readings after about 15-20 more minutes. I am anxious to see how the test results come back. I hope the doctors can give me more information on these "startles" that she continues to have and maybe a treatment as I am thinking this might have been the problem all along. When she wakes up at night and tries back to fall asleep she keeps startling herself awake. This is just a theory but hopefully we will gain some insight into it.

The sticky stuff they put in her hair was awful this time. It went on like an oily Vaseline and dried to the consistency of a hard ear wax. We did 3 hair washings at the hospital and I will do another this evening to try to get the rest out. We finally left Vanderbilt at 11:30 and got home at 15 after midnight. I went ahead and gave Kendal a snack and milk and she went quickly to bed - that is for about 90 minutes. She woke back up around 2:30 and probably didn't go back to sleep until 4:00 and then slept till 8 this morning. I figured the disturbance in her schedule would throw her totally off and I'm so glad I did not have to work today.

She is taking a nap now and will hopefully get back on her regular schedule. Thank goodness we don't have anything else going on this week. I pray it will be boring!!

A Hard Week for Kendal

Well, I finally have the video on here thanks to James and the work he put in to get this thing edited. I took this video last week and it shows the progress that Kendal has made in her verbal sounds and her signs. Suzanne, the speech therapist, is totally awesome and truly loves what she does. Since she has came into our lives, Kendal has made tremendous progress. Suzanne is one of the most determined people I have worked with and she KNOWS that she will get some words out of Kendal, even when I sometimes have doubts.

It has been a week since the last post simply because Kendal has been sick and now me and James are feeling the effects. I took her the doctor last Tuesday and they said she just appeared to have a viral infection. Things seemed to get much worse Wednesday and Thursday and finally on Friday I took her back. She had an ear infection, sinusitis, tonsillitis, and strep throat. Of course at the doctors office, she acted like her usual self - as we walked to the examination room Kendal giggled, laughed, and squealed. I asked her politely to please act sick--

This week we appear to be back on schedule for the most part. Tomorrow evening we are going to Vanderbilt for an EEG as part of the research study Kendal is involved in. We are anticipating not being home till 11:00 or later so I am taking off of work Wednesday to recover from the late night I will probably have with Kendal. She loves her routine and really seems to struggle when we throw a wrench into her schedule.

I wanted to give Regie and Yolanda Hamm a big congratulations on all their recent success. Please check Regie's blog (on the side bar) to hear their story. We met them first over the phone after we got Kendal's diagnosis and then we got to meet them at the Angelman Syndrome Walk-A-Thon. Their daughter also has AS and they have been so supportive and have always lent an ear when we needed one. Regie recently won the American Idol Songwriter Contest and his winning song was also played at the Olympic Opening Ceremony.

It's August Already???

I can't keep up with the months anymore. They are flying by this year! Not much has gone on this last week. James had this past weekend off so we spent time around the house hanging out with Kendal. Saturday was nice and we went outside and played with moon sand and finger paints. I tried not to freak out about the mess and just enjoy it. I know Kendal loved it.

Dr. Barnes (neurologist) has advised to go ahead and get Kendal in a sleep study. He indicated that it is normal for kids with Angelman Syndrome to go through phases of good sleeping and bad sleeping. They have scheduled her an appointment for the first week in September. I really dread doing it but I know next time she has another bad sleeping phase I will have wished that I did the sleep study.

I had to pick up Kendal from daycare today and take to the doctor due to fever and a possible ear infection. They stated it was probably just a viral infection going around and they prescribed a steroid to help clear up the inflamed throat. Nana will be watching her tomorrow (thank you!) which is both good and bad. Good in the fact that Kendal will get to spend time with Nana. Bad in the fact that Nana spoils her to death and she probably won't want to come home with me.

I called the geneticists today to try to get an update on the latest tests to determine if Kendal has a mutation of a gene on the 15th chromosome which would be the cause of her AS. I'm sure the people hate me in the doctors office (it has been 4 weeks since they were to run the test and I still haven't heard a word), but I have learned to be extremely persistent about things especially when it comes to Kendal. We have to fight for what we think is best for our kids. I think that God has literally suited me up with battle armor sometimes because I feel like I sometimes have to go to battle to get things handled correctly. It is just the price we are willing to pay for our children.

I've included some pictures of Physical Therapy from this past week. Kendal, as usual, had a ball.

Hopefully in the next couple of days I will have a video link of what Kendal is working on in Speech Therapy. Stay Tuned!

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.