A Nice Gesture

This week has been hard for two reason - it is deathly cold outside and Kendal's a little under the weather. Nothing major, just a snotty nose and alot of drainage. The last two days I have had to completely douse her face with Vaseline. She loves me so much right now!

I got a nice gesture from the neurologist (see last two posts) this afternoon. I had requested his nurse write up a recommendation letter on Kendal's therapies for the insurance company. We are not sure at this point what kind of coverage we will have when she rolls off of the TEIS program. The insurance plan has Maintenance Therapy which calls for a maximum of two therapy sessions within 30 days of Speech, Physical, and Occupational Therapies. Kendal currently receives 16 sessions in 30 days. The doctor said he understood the complications with insurance as he has had to deal with his 18 year old son who has severe autism. He said he would type up the letter this afternoon detailing to the insurance company that the therapies are detrimental to Kendal and her progress. He said he would write it up that it is a necessity at this point to continue current therapies as is to avoid further complications down the road concerning her physical and mental health. He wanted to warn me not to pay any attention to the wording, that it was just to the benefit of the insurance company. He further told me not to hesitate to call him if I needed any help with the school system when I enroll her. I thought he really went out of his way to understand my situation and our needs. This is the doctor I remember from our first visit with him!

I have the night off tonight. After eating dinner, James sent me upstairs to have an evening by myself - to do some reading, make a post on my blog, take a bath, go to bed early, etc. He has gotten in the habit of doing this at least once a week and it is so nice. Thank you so much James!!!

She's ready for the Wheel-Barrel Race!

The last couple of days have been great. James was off this weekend so we got plenty of "family time". Saturday afternoon we dropped Kendal off at my cousin's house and me and James headed out to a movie and dinner. We had such a good time - we even flirted back and forth. We went to a Hibachi grill, which is one of my favorites, and ate like kings. Kendal seemed to have a great time while we were gone and did not seem the least bit concerned that we had left her.

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This morning I got back on the ball with all the things going on with Kendal. She had Speech Therapy this morning, and then when I got to work I registered for a class for me and James to attend. The class is supposed to fully explain the role of special education in the school system, Kendal's rights under the disability act, and what to expect dealing with issues related to Kendal and the school system. It's a 3 hour class and Nana has agreed to come over and watch Kendal for us.

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I also contacted Kendal's pediatrician to request a letter of recommendation for a minimum for twice weekly Speech Therapy sessions. This letter, along with another one I will get from the Neurologist, will be attached to the request for further authorized visits for the medical insurance. There seems to be a limit of therapy sessions authorized per year unless you have a specific medical diagnosis of cerebral palsy, down syndrome, and a few other well-known disorders. The Speech Therapist thought that they might go ahead and approve it with we had some additional recommendations from Kendal's doctors. Please keep this in your prayers!! Kendal has made some amazing advancements with her Speech Therapy and I would hate to slow down her progress.

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I also contacted TEIS and left a message with our Service Coordinator. I called this morning and did not get a return call back today. James noted that Kendal is only 2 months away from getting kicked off the system and that we are probably pretty low on the totem pole - I think he is right. I was calling to express my displeasure over the Behaviorist that was supposed to be helping us. She was to attend Kendal's therapy sessions last week and observe what behavior issues Kendal is having with the therapists and then advise different methods to address certain issues.

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Monday she showed up 20 minutes late with no apology or excuse for her tardiness. I was quite aggravated at this because I do not conduct myself this way, especially professionally. She gave us little to no feedback. She then was supposed to be at Physical Therapy Thursday and she showed up 40 minutes late as I was putting Kendal's shoes and coat on. I was livid to say the least. She then stated she couldn't make the Occupational Therapy session because it was just too early (which I understand, it's at 6:30am on Fridays). She left a message for the Occupational Therapist (who of course played it back for me) stating that she was just calling because the mom wanted her too and if she had any questions to call her back.

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My question is simple: How do you disciple a child that is usually happy?

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Spankings don't work, time-out doesn't work, taking away toys doesn't work.

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She is not your typical child in these ways. I just want some new ideas to try.

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I have decided I don't want the Behaviorist to call me back, and I definitely don't want to work with her. I can already tell you, it would not be a good working relationship. And if anything, Kendal would probably learn some bad behaviors watching me react to the Behaviorist.

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As an update to my last post, I did get an email back from the neurologist. He apologized. I was thankful for that, whether he genuinely meant it or not. It was nice to read it and he seemed to respect my wishes on how often he saw Kendal. I'm glad I emailed him telling him how I felt. If anything, I feel better just getting it off my chest.

FUN!!!

Just a warning - the title of this post is a sarcastic one. Yesterday we had a neurologist appointment for Kendal. We had this appointment because several months ago I had called the doctors office because I had concerns over Kendal doing an odd behavior of tilting her head drastically to one side for 5-15 seconds while walking around. Now, wait. I know it sounds stupid to call the doctor over something like this, but because of the high risk of seizures (80-85%) associated with Angelman Syndrome I am on high alert (and a little crazy, I admit). The doctor had previously described the many different kinds of seizures, and I wanted to at least inform him of what she was doing. The nurse had gotten back with me and said the doctor didn't think it was anything to worry about, but he did want to go ahead and see her again in the next month or so. Hence, yesterday's appointment.

The weather yesterday was ugly so I dreaded taking Kendal all the way to Vanderbilt, fighting the traffic, navigating the parking garage, and getting her out. The appointment was at 10:00 and they actually called us back after just a few minutes of waiting. A doctor that I had never met came in, introduced himself, and starting asking questions about Kendal to determine our concerns. We really had no concerns (at least for the neurologist) to speak of so we ended up talking about some behavior issues that we have been having. The doctor finally comes in and maybe stays for 5 minutes. He is not in a position to see patients as he was having bad back pain and could hardly walk. He said our concerns we needed to take up with another doctor and said he would see us in another 6 months. Before I knew it, he had already left the room. I was livid to say the least. He had not spoken or even acknowledged Kendal when he was in the room.

I emailed the doctor today after some more thought and explained that I was not sure why he needed to see her again in 6 months. I further told him that I had to take off work to make the appointment and that it was a complete waste of my time. I even said that it seemed like they were trying to figure out why I was even there if I didn't have any concerns and I pointed out that he had requested the appointment, not me. He has been good about returning emails in the past. We will see if I get a response.

I wasn't in any way trying to be disrespectful but I think it is important for these doctors to remember that it is not easy making these appointments, especially in our busy lives and to have my time wasted is extremely frustrating.

I wonder how much he will bill my insurance company? Do you think it will be a discounted rate because of the little amount of time spent with us? I'm guessing no - What do you think?

The End of 2008 - A Whirlwind

Me and Kendal at Thanksgiving visiting family.

Kendal playing with the paint used to paint Christmas ornaments.

Me and Kendal doing some shopping with Aunt Tara. As always, Kendal is trying to entertain the "passer-bys".

Nana, Grandpa, and Kendal (in her Christmas dress) on Christmas Eve.

James helping Kendal unwrap a gift on Christmas morning.

I can't believe it is already 2009. I'm so excited about the new year and what adventures it might bring. We have been off from work quite a bit in the last two weeks and loving every minute of our time at home. I am posting a mix of pictures from the last month to show some of the things we have been up too.

We were able to visit with so many people for the holidays. We had dinner with my dad's side of the family, my mom's side of the family, my sister, her husband, and the girls, James' family, and some good friends of ours that moved to Houston earlier this year. We hate that we aren't able to see some of these people on a more regular basis - we had such a great time visiting!

Kendal only had therapy one day this week due to the holidays but next week we will dive back into our regular schedule. Tuesday we have another appointment with the neurologist for a checkup. Kendal has contracted the oral Type 1 herpes virus and has had cold sores continuously (moving around her mouth) for the last month. Although it doesn't seem to hurt her, I hate that this will probably continue to be a problem since she drools so much. When the geneticist saw her, he immediately noticed the inflammation and wanted us to talk with the neurologist about possible medications to help control the drool. Excessive drooling is common with Angelman Syndrome, and although the geneticist said he does not normally recommend medications for this problem (side effects are not worth taking the medication in many cases), he thought it was something we might need to take a closer look at because of the herpes virus. Topical medications are useless because we cannot keep her mouth/chin dry. She will probably be one of those kids with a bib on in every picture, although I have been better about removing it when the camera comes out!

I hope everyone had a fantastic New Years and best wishes for 2009!

BTW - Has anyone seen any big increases in their electric bill? We just got ours and it's up $100 from last month and $120 higher than December 2007. What's up with that?

Merry Christmas!

Christmas is here and will be over way too soon. It has been such a beautiful day and I am so thankful to spend the holiday with our loved ones.

I had gotten the Faith Hill Christmas CD and have fallen in love with "A Baby Changes Everything". Listen to it here http://music.aol.com/new-releases-full-cds/#/1.

Is it December already?

I keep asking myself, "Is it December already?" I can't believe how fast time is flying by. This week has been the usual with Speech Therapies on Monday and Wednesday, Physical Therapy today, and Occupational Therapy tomorrow at 6:30 in the morning. Ohhh, how I love the weekends!

On Tuesday we took Kendal to her new geneticist. This doctor is mainly a research doctor that only sees patients two days a month. He spends the rest of his time doing research mainly on Angelman Syndrome and research on gene therapy for genetic disorders. Both me and James really, really liked him. He was very personal and easy to talk too; which, for a geneticist is pretty unique. He spent over two hours with us covering so much information that I wish I had taken a audio recorder with us. I still am processing some of the things he told us and that is my job for the next 6 months until we see him again. Just to try to process and understand what we are dealing with.

I think as parents we always try to see the bright side of things when it comes to our kids. Of course, I walk in the office like I know it all because I am an "expert" on Kendal, as the doctor repeated several times. I noted to the doctor that she was obviously higher functioning than most AS children and that she obviously doesn't have any mental retardation or the seizure issues that so many have. I think I apparently came off disillusioned because he spoke first and foremost about what we are dealing with and stressed that we needed to prepare for the following: she probably won't ever talk, she won't be able to read, she won't be able to write, she won't be able to be unsupervised, and that she probably won't be able to live on her own. I have read all these things anyway on the computer concerning AS but when a specialist in the field tells you face to face to seriously prepare for this, it is quite shocking and out of this world. I kept telling myself, "you're not talking about my child".

Kendal was diagnosed in February 2008 and I can't believe I am still fighting denial in some areas with Kendal. Of course, I am extremely pleased and proud of her progress in the two years that she has been in therapy, but I guess I always thought in the back of my mind that maybe she would be healed. The doctor emphasized the importance of hope but didn't want us to be unprepared with the probabilities that we could be facing.

I am deeply saddened in a lot of ways.

I hate AS because of what it has taken from my daughter, but thankful for AS for making her who she is. Does this even make any sense?

The doctor had spoke more than once about this being a marathon not a sprint. I think he could tell that we are just tired. He emphasized the importance of me and James spending time together away from Kendal and I agree that we need to invest in us to better be there for Kendal. I have a major problem though asking for help. Both my mom and dad raised me to be independent and take care of my own business, so I have never been one to ask for much help (my dad might disagree with that statement!), but I will have to learn to let people in, because I am not sure how much more I can take at times.

The doctor wasn't all doom and gloom though. He really liked some of the things Kendal was doing - she was very sociable and maintained eye contact and was good with social cues. He strongly suggested we begin to work with a behaviorist. We will have to see if we can even fit that in our schedule in the future - at this point there is no time for it. Despite all the things that we again didn't want to hear, nothing has changed. Kendal is still the same Kendal despite the realization that she might never be miraculous healed - that might not be God's plan for her.

I guess when it all comes down to it I am not worried about Kendal. She has two parents that absolutely adore her and will make sure that she is always well taken care of. I think just letting go of some of our dreams for her, or maybe just changing some dreams we had for her. I continue to pray for peace and letting go of these stupid old dreams for her that I carry around in my head. My new dream for her should just be that she live a joyous and wondrous life. Now that's a good dream for our children.

A Busy Week

This past week has been busier than normal with Christmas approaching. We have alot lined up in the next two weeks but I will try to stay diligent in posting new entries of what we're doing.

Speech Therapy went great both Monday and Wednesday because Kendal is making new and different sounds. This is truly a blessing and makes us so much more appreciative of any progress she makes. Physical Therapy also went great and Kendal really seemed to enjoy it more this week than she has in the last two weeks. We didn't have Occupation Therapy this week due to the snow/ice we received Thursday night/Friday morning. Both me and Kendal were glad for the break because we both got to sleep in. I got to sleep till 6:00 instead of 4:45. It was wonderful.

We have yet to get Kendal anything for Christmas. I'm hoping to get out today and do a little shopping. She is a little hard to buy for because she does not like a lot of "age appropriate" toys yet. It has been suggested that it is a good time to begin to introduce toys that encourage imaginative play like dolls, play kitchen, etc. I know that her grandmother is buying her a doll this year and I am anxious to see how Kendal reacts to it. I see little girls all the time carrying around their baby dolls and that has never been something that Kendal has been interested in. Hopefully now, she will engage in more imaginative play. Me and James have talked about possibly getting her a trampoline or something to bounce on. She is learning to jump and she really has fun bouncing. Beyond that, we have no idea what to get her. Typical girl I guess - hard to buy for!

New Progress!

This week has been a slow week as far as entertaining activity. We have continued our daily routines as this week completely flew by. In the last 2-3 weeks, Kendal has made tremendous steps in her vocal abilities. She has finally discovered her tongue can move in all different directions (see video)! Of course this is a huge deal because we all know that until you move your tongue, you're not going to get many sounds. For the last several months we have been working with her to try to stick out her tongue (we actually encourage her to do this, I know it sounds strange). Not only that, she has begun blowing air while moving her mouth to start making the "ththth" and "dadada" sounds. Yes, this progress is truly amazing!