Physical Therapy Update

Kendal just recently had her 6-month evaluation for physical therapy. Everything went really well as expected and she is continuing to progress in her gross motor skills. She has a 33% delay, which is the same percentage delay she had 6-months ago. This does not mean that she is not improving. She is improving at the same rate she is aging, so we are really pleased with all her progress.

Kendal thoroughly enjoys physical therapy because Amber always makes it totally fun and incorporates whatever Kendal wants to do with whatever movements Amber is trying to get out of her. The above clip is a little more ridged simply because she is trying to see the extent of Kendal's skills for evaluation purposes.

I spoke with Amber concerning the delay and explained that our focus was Kendal's functionality in everyday life. Some of the skills that she is being evaluated for are not so important to me (standing on one foot for 3 seconds, kicking a ball 7 feet, throwing underhand, etc.) because I feel like these skills will come as time permits. I am more concerned about the skills she needs for everyday living (walking up stairs). Amber totally understood and supports us in our goals for Kendal.

To me, her progress seems so amazing. This is a totally different child (mobility-wise) from even 8 months ago. I was concerned that TEIS would kick us off the program because she has done so well, but to qualify, Kendal had to have at least a 25% delay and now that she is diagnosed I think she is automatically covered.

For those that aren't familiar, TEIS (Tennessee Early Intervention System) helps coordinate early intervention services with delayed or special needs children. This has been really nice because they contract with independent therapists that can come to our house. TEIS has been very helpful because they cover our co-pays for our insurance coverage that we would normally have for each session. We calculated it would be approx. $320-$400/month just in co-pays. TEIS is only available from birth to 3 years of age. After 3, the child can receive their therapies in the school systems. Usually 4 days a week, 3 hours a day, the child will be with other children that need services and will receive therapy most often in a group session. Kendal has 5 months before she is taken off TEIS, and we are not sure what we will do after that point.

Tomorrow evening Donnetta will be coming over for a visit. We haven't seen her in 3 weeks, but we are pleased with that extra day that we now have since we have changed her visits to once per month. We were growing quite attached to her and enjoyed seeing her and talking about what was going on with Kendal - but that extra day a week off now really gives us a break.

Guess who didn't get any calls from any doctors today.......ME!!! I will have to email Kendal's neurologist again tomorrow.

Finally Did It

I finally got something accomplished this week - the poster. Of course, I had to start from scratch because I did not like the look of the other one I was working on. I will have to make at least one more to take to her school (of different signs), as I am finding more and more signs that would apply to her everyday activities.

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The school/teachers have been so good to work with Kendal using her signs. Her teachers have asked me several times to clarify a sign they were trying to use with her. It is so nice to have a supportive environment that treats Kendal just as they should - they treat her like every other child they have.

Do I have to do everything??

Apparently yes, I do have to do everything. I get so aggravated following up with doctors and people that should be doing their jobs. These people are supposed to make things easier, not harder on me.

WARNING: This is a rant, Beware!

I have been trying to get help with a Behaviorist with Kendal that can possibly work with me and James and learn how to deal with behavioral issues. She is still swinging her arms alot and trying to hit people in the face. She does this quite a bit with the therapists when it is apparent she does not want to do what they are asking. With her communications delays, I think this could probably get much worse as she gets older and gets aggravated and frustrated about things. The speech therapists came in this morning with cut marks up and down her arms from working with a child yesterday. She was literally bleeding from her wounds and apparently this is not too unusual when working with all kinds of children with special needs. In my book, that is totally unacceptable and something that I will not tolerate from Kendal. I feel like if we take care of the situation now when it is a small problem then hopefully it will not escalate to the situation I just described.

Anyway, TEIS (Tennessee Early Intervention System) said they will only get a Behaviorist if she is diagnosed as Autistic. I explained that I needed help and that AS and Autism have a lot of the same behavioral characteristics. The neurologist explained this when we saw him because he has an autistic son and deals with some of the same issues we have. So I then called the neurologist to see if he would write a letter on our behalf explaining that he highly recommends a behaviorist and that the behavioral characteristics are very similar to Angel man Syndrome. Of course, they told me they would get right to it and of course that was almost 2 weeks ago and I have to follow up with them to make sure they are going to get it done. Also, the doctor was supposed to call me with Kendal's EEG results (see 8-13-08 post) and of course I have heard nothing. I don't like to be a bother but my goodness, if I don't handle things they will not get done. I know this doesn't seem like a big deal but in EVERY situation dealing with Kendal's stuff, I have to check, recheck, and call and recall to get things handled. Why can't they just do it??

I still don't know if TEIS will help me with this even with the letter but our service coordinator said we needed to give it a try regardless.

Also, I'm wondering if the geneticist is ever going to call me. I spoke with Terry Jo a few weeks ago (see 9-4-2008 post) and she stated she was going to be sending some information to the geneticist about further testing on Kendal. Of course I haven't heard from anyone. I don't know if Terry Jo sent the info and if she did I don't know why no one has called me. I guess I will have to send an email tomorrow to Terry Jo and see if she sent the stuff over and if she says she did I will then make contact with the genetic counselor.

I will try to make some phone calls and light some fires under someone. Wish me luck!

A Crazy Week

I have been meaning to do a new post for the last several days and like everything else, it just doesn't seem like I have enough hours in the day. I was actually home most of the day last Saturday besides having to go out for a shopping trip which was really nice. Sunday I ended up going to the Gladeville Baptist Church (where I'm a member) and went to a women's luncheon afterward to listen to a guest speaker. I had a great time and it was nice to actually be on my own for a few hours (James stayed home with Kendal).

Monday was a regular day that started out with Speech Therapy.

Tuesday was a little crazy because after I picked up Kendal from Preschool, we went over to Teresa's house (Kendal's babysitter from 3mo to 27mo). We stayed for dinner and Kendal got in a good visit with Teresa, Baleah, and Jared. She even saw Bruce for tickle time and Kassidy for a few minutes. Kendal did not want to leave (surprise, surprise) but we finally got out of there and headed home around 8:30. The Randolphs mean so much to me - they are practically family and I'm so happy to have them in my life.

Today was another session of Speech Therapy before heading off to work. The music man came to Preschool today, and we got some of it on video which I will post hopefully this weekend. Kendal LOVES her preschool. She runs up to the owner, Ms. Karin, and all her different teachers with arms outstretched. She doesn't cry at all when I drop her off anymore. It makes me feel so good that she has transitioned as well as she has. I have been working on a "sign-language" poster board to hang in the classroom but like everything else, I just have not been able to finish it. Again, maybe this weekend it will get done.

We had another showing this evening on the house and hopefully we will hear some good news. We have decided if we don't get anymore bites in the next 30 days of so that we will take it off the market until February. We ran out to get dinner tonight and after that I went to The Children's Place (where I had a gift certificate) and picked up a few things for Kendal. She has gotten so big. She is wearing 4T in most of her clothes. As the weather starts cooling off, I will be hitting the consignment shops and loading up for this winter.

Tomorrow is another crazy day. I will have Speech Therapy, Halloween Pictures for Kendal, and another mammogram by 10:00 in the morning. After that, I will run to work and then after work stop by Dad and Doris' house to visit for the evening.

No plans for Friday besides Occupational Therapy. Hopefully this weekend I will be at home so I can get some projects done.

Gotta to go to bed!

Her 1st Carousel Ride

Surprisingly to me, Kendal really enjoyed her 1st ride on the carousel at the Wilson County Fair this year. I can't believe she is getting so big! Sometimes I have to do a double take - my baby's now a little girl...

Who Needs a TV?

We find ourselves totally entertained at times by the goofy stuff Kendal does. She got this little snail from Bob (boss) & Lisa this past year and it is the one toy that she hasn't grown out of. She scoots around everywhere on her little snail.

Kendal's Injury

Kendal had an injury today at school. She fell while outside on the playground. She is doing well but as the evening wore on, I saw her touching it more often like it was bothering her. I held her tonight before bed and just gently rubbed her face over and over. She is so beautiful - I just kept praising God.

Speech Therapy Progress

I got such a great response last time I posted a video of Kendal's therapy, I decided I should do it again so everyone could see Kendal's progress. Although it is slow, she continues to make steps toward communicating with the world. She learned a new sign today - WANT. I mean it was just introduced for the first time last week and I think she has totally nailed it.

I was talking to Doris and Shirley today about my aggravation that she is not more verbal. We have been in Speech Therapy for a year now and I was hoping by now we would have had a "da-da". Today Kendal was very quiet as you will see in the video. Sometimes she squeals and makes sounds throughout the session. What can I say, it was Monday morning for us.

I just have to say a huge THANK YOU because both Doris and Shirley have been so supportive and understanding. When I have down days, they let me voice my frustrations and fears and I don't have to worry about being judged or being told I shouldn't feel that way. Sometimes I feel sorry for myself (I guess we all do that sometimes!) and I just think that this parenthood thing is not exactly what I had imagined. I didn't think I would have to learn sign-language to communicate with my child. I didn't think therapies and doctor's appointments would consume so many of my days. Don't get me wrong, parenthood has brought me so much joy and love that it is even hard to describe in words. I feel so utterly blessed to have this child, and yet sometimes frustrated beyond belief.

Tomorrow I'm going to sit down and make a poster of all the signs Kendal is doing. We are going to hang it up at preschool so the teachers can also familiarize themselves with her signs. I think she is up to 8-10 signs. It's pretty amazing that she seems to remember them - she has to remind me of them sometimes!!

Hope everyone has a great week.

P.S. This video was much longer than I anticipated. I have just reviewed it and it has put me in a light slumber. Beware!

The Zoo - The Mammogram - Oh Me - Oh My!

The last several days have been as busy as ever. This past Saturday I headed off to the Nashville Zoo with Kendal to meet Teresa (Kendal's caregiver for the last 2 years). Kendal was so excited to see Teresa, I thought she was literally going to undo the seat buckle herself and jump into Teresa's arms. I make jokes both with Teresa and Doris (Nana) that they must put something in her milk to get this kind of reaction. I haven't quite figured out their secret.

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Baleah and Jared also stopped by at the zoo to see Kendal which was pretty cool. We had such a good time - I truly miss seeing these people on a daily basis.

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Sunday James took Kendal out for a couple of hours so I could have some time to myself. It was very nice but I found myself really looking forward to them coming back home. What can I say - I am just so happy being with my family. We always just have a good time either hanging out on the back deck or playing in the floor with Kendal.

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Monday and today we had Speech Therapy and I again expressed my concerns with Kendal's progress. I have to remember that we are on God's schedule - not mine. This is such a hard lesson to learn.

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This weekend we are planning on going to the Cumberland Science Museum. We haven't been in years, and we are looking forward to letting Kendal experience some of their exhibits. Pictures will follow.

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On a side note....

Today I had my first mammogram. Now I am a big weeny when it comes to pain, but I am telling you there was no pain or discomfort having this done. I, like most people, have heard horror stories. I was quite nervous by the time I got there for the appointment, but it went great and I am proud that I took the initiative to get it done despite the fact that my insurance company wouldn't pay for it because of my young age. If you need to have a mammogram, I strongly urge you not to put it off.

National ASF Walk-A-Thon Results!!

Thanks so much again for all the support we got for the 2008 Angelman Syndrome Foundation Walk-A-Thon. We collected from family and friends over $3,500 this year! Thank you so much for your generosity and making a contribution on Kendal's behalf.

Here are the national results..... (from the ASF Website)

The 2008 ASF National Walk-A-Thon has been a tremendously successful, record-breaking event thanks to the thousands of volunteers and participants in 19 cities!

We are pleased to report that the 2008 ASF National Walk-A-Thon surpassed the $1,000,000 mark this year to support Angelman-specific research, education and general support!

Current preliminary, unaudited figures show 4,554 participants raised a record-breaking national total of $1,116,582! Many thanks to everyone who volunteered, participated and so very generously supported the 2008 ASF National Walk-A-Thon. This event depends on your dedication and participation and we thank you for your committment!

If you wish to make a contribution to the 2008 ASF National Walk-A-Thon and help us reach our 2008 goal and have not yet done so, click www.firstgiving.com/angelmanwalk to make your generous donation. Thank you!

Back in the Saddle Again...

Now with the holiday behind us, we are desperately trying to get back in the saddle with therapies, appointments, etc. Tuesday we had a doctors appointment with a sleep specialist. It went great to my surprise. The doctor spent 1.5hrs with me to thoroughly discuss the sleep concerns we have had with Kendal. Before the doctor came in, the nurse had asked me what Angelman Syndrome was - are you kidding me??? I tried to explain briefly but I had major concerns because children with AS do have sleep problems associated with the syndrome and I didn't want to have to educate the doctor on what little I know. Thank goodness the doctor was well aware of Angelman Syndrome and discussed the different aspects of how AS can effect sleep. She was very well versed and took a lot of time with us and seemed like she really wanted to help. She suggested that we tweak a few of our routines associated to her sleep time and also suggested that we keep a log until we see her again in 8 weeks. She stated that many children with AS are on sleep medications but we would try to correct any environmental or behavioral issues before we resort to drugging her. We have bumped up her nightly intake of Melatonin to 6mls and it has been working beautifully. She has slept the last several nights with no waking up. What a dream come true!!!

I spoke with Terry Jo (research advisor) and she told me they want to get Kendal in for a physical and neurological exam for the research study she is in. We also discussed whether we should proceed with further genetic testing on Kendal. Terry Jo feels like Kendal probably has an imprinting defect of her gene that has caused the diagnosis and suggests testing to clarify the recurrence risk. She has already warned me that sometimes they have to fight with the insurance company to pay for the testing. She stated that the testing was expensive (i'm guessing in the thousands) and that oftentimes she has to write letters to the insurance companies explaining that the test was crucial in determining if subsequent children will have the same diagnosis. In the next few weeks, I will try to investigate whether our insurance company would pay for this - I just don't think the test is that important to me right now. I guess I'm just up in the air at this point.

I explained to Terry that I haven't spoke with many of the other AS families because Kendal seems to be doing so much better than most of the other cases. I feel bad in a way that we have been so blessed. Kendal doesn't have near the obstacles that so many other children have to deal with. She totally understood and stated that once we found the mechanism, she would match me with a family that has the same type. It would be so nice to talk with another family that has a child like Kendal. Angelman Syndrome is still pretty rare and hard to find many people that have been exposed to it.

Awaiting on an email back from the Neurologist. Will update you hopefully soon on the EEG results...

Labor Day Weekend