Purple Day 2011

Every March 26th is Purple Day. It is a day to promote Epilepsy awareness. It is worldwide and there are lots of walks and parades that go on. Unfortunately, there aren't any events close to us this year. So this year, we are asking all of you (all of our friends and family, extended or otherwise or anyone else who would be so inclined) to please wear purple on March 26th and take a picture of yourself and your families and send them to us via email (ksully4@live.com) or snail mail (email me for our address,) so that we can make a little scrapbook for Cierra so that she can feel like she was part of the festivities and to help her know that she isn't alone in her battle. If you would like to include a little note or some kind of encouragement, we would love to include it in the scrapbook with your picture.

Epilepsy has robbed Cierra of a normal childhood. She is on a high dose of a strong medication that has serious side effects and she still continues to have daily seizures. She is possibly facing major surgery this summer that could cause her to lose her speech and other motor skills that she will have to relearn.

Please show Cierra your love and support by doing this one small, simple thing this year. Please feel free to pass this along to anyone you know who would be willing to help with this project-friends, neighbors, church members, etc. We would like to get as much support as possible with this. This will also help to spread Epilepsy awareness. Thank you all so much. I know that this will mean so much to Cierra.



Click the link below for more info about Purple Day.
http://www.purpleday.org/

Another meeting with Caden's teachers

I met with Caden's teacher, the autism teacher, and the director of the school this afternoon. We were meeting to talk about Caden's transition to kindergarten. They had previously told me that Caden would be getting an aide for 1/2 day, every day next year. Not so much anymore. His academics are too high for him to qualify. They can put him in an inclusion class that has a special needs aide in the classroom, but she will be working with all the kids, not just Caden.



They also told me that they don't think he will qualify for speech therapy anymore. These were my fears when we had PT conferences, but I thought they were resolved. Again, not so much. The speech therapist was supposed to be at the meeting, too, but was sick or something. So the ST is still on the fence. He does still need ST and I have a feeling that it is going to be a battle to get it for him. He is NOT meeting the goals on his IEP in the speech area, so I'm not sure how they can decide that he doesn't need it anymore. I guess I will have to take his IEP in and fight them about it. I feel like they don't have a whole lot of experience with high functioning autism. They are great with severely autistic kids, but I'm not sure they really understand Asperger Syndrome.

Again, let me stress that I am thrilled that Caden is doing so well. He knows most of the alphabet, he can almost count to twenty, and he knows shapes and colors. He does really well with concrete information. But abstract information goes completely over his head. It's not even on his radar. For example: I had a rough day the other day about all the things that are going on with Tyler and I was sitting on the couch talking to Erick and crying about all of it. Caden was on the floor playing. After a few minutes, he climbed in my lap and I thought he was being so sweet, but he pulled my eyelids open and informed me that he was hungry. He didn't have a clue that I was crying. And if he did notice, it didn't occur to him that I might be upset. Emotions are abstract and confusing and Caden doesn't really understand them at all. We are working on it though and many other issues, but I need the help and cooperation of the school to make sure that Caden reaches his fullest potential. Next year he will be at school 7 hours a day, 5 days week and they need to be aware and understanding of the areas that he needs help with.

So next week I will be evaluating kindergarten classes at ECEC and at JMA and hopefully be able to make a prayerful decision about where to send Caden next year. Wish me luck.

In the mean time, enjoy some pictures of my cute boys :)

Maria Tortilla and the 7 Mexican Midget Wrestlers

Kenz had an assignment at school to rewrite a fairy tale. This is what she came up with. I love it and had to to share :)

Maria Tortilla and the 7 Mexican Midget Wrestlers

By Kenzie Sullivan

Once upon a time, a lonely girl named Maria Tortilla was wandering aimlessly through the woods. After some time of wandering, Maria found a cottage. Coming from the cottage was salsa music and the smell of fresh corn tortillas. Maria rushed over to the cottage. She was hungry and fatigued from her walk. Maria knocked on the tiny front door.

“Pedro! Open the door!” Maria heard footsteps before the door swung open.
“Oi! It’s a woman!” Pedro yelled. 6 other men, all short and buff, appeared behind Pedro.
“Senorita!” The midgets cried. Maria noticed the men were all dressed in shiny spandex speedo’s and wrestling masks.

“I,” Pedro said, “am Pedro. That’s Xavier, Miguel, Jose, Jorge and Rafael. Oh. And that’s Lenny.” He said gesturing to a dwarf with thick glasses and flab instead of ab. “I’m Lenny!” The fat dwarf squeaked.
“Oh.” Said Maria.
“Please come in senorita.” said Xavier.
“Oh…well…. I suppose.” Maria said. She was intimidated by their speedo’s.
“We were just about to sit down to dinner. Please come and join us.” Jose said.
Maria and the 7 Mexican midget wrestlers dined together and played games after dinner.”

“So tell us Maria,” Miguel said, “why you have come here.”
“Well…” Maria said,” My step-mother wants me dead. So I ran to try to preserve my life.”
The midgets gasped.

“Never fear! Your step-mother will never hurt you! We will protect you! We are the 7 Mexican Midget Wrestlers!” the midgets cried with determination in their faces. Maria Tortilla smiled warmly at her new friends. “Thank you ever so much.” Maria said.

Just then, the cottage door flew open. A scary looking old woman came in wearing a wicked grin. “Stepmother!” Maria cried. “leave me alone!” But the old lady just laughed and lunged at Maria. The midgets stood there helplessly, staring at the fight unfurling in front of them. Maria’s stepmother held a jalapeño up. “This is poison!” The old woman cackled before shoving it down Maria’s throat. Maria gasped then collapsed as her stepmother ran out the door.

The Mexican wrestlers started screaming as the impact of the recent event hit them.
“That evil lady!”
“Poor Maria! We said we would protect her! We have failed!”
“Wahhhh!”
In all the chaos, Lenny had gotten an idea.
“Brothers, what about a kiss? Do you think that will wake her?” said Lenny.
“Yes! Of course! Try it Lenny!” Pedro said
Lenny kissed Maria and she woke up. “Oh thank you!” Maria cried. “That evil woman tried to kill me! And you saved me Lenny!”

Maria lived with the 7 Mexican midget wrestlers for years after the incident. The 7 midget wrestlers became professional wrestlers and turned out to be very wealthy. Maria never saw her stepmother again and they all lived happily ever after.

The End

Another Week Gone

Life is speeding by right now. I get so frustrated with my kids sometimes and then I sit back and realize that this precious time I have with them, will be gone all too soon. Caden won't want to snuggle in bed with me anymore and Tyler won't hang on my legs while I'm cooking and Cierra won't need me to tuck her in anymore and Kenz won't be excited to see me when I'm at the school for different things. Kenz won't even need me to drive her places for very much longer. She will have her permit in just two, short years!

Last night I was looking forward to a trip to Walmart by myself. I was getting ready to pull out of the driveway when Kenz came out and asked if she could come. And of course I said yes and she ran in to get her shoes. Cierra followed her out and begged to go, too. In she came. Then little Caden, with those big blue eyes, was at my window pleading to come with us. How could I resist? Erick was standing in the doorway holding Tyler this whole time. We shrugged at each other and he brought Tyler out and they joined us. So, my alone time didn't happen, but there is going to come a point in my life that I won't have little people begging to come with me. I am so grateful for the four, beautiful children that I have. So many people don't have children at all or are missing little ones that have passed on. And while we have had many, many trials, I am so blessed that I have these four amazing kids here with me, who love me unconditionally and are always willing to forgive my shortcomings.

Kenz and Cierra are having the Color Expo at school this week and are both looking forward to it. On Wednesday they get to Tye dye t-shirts and on Friday they get to wear them to school. They are both really excited about this because they normally have to wear uniforms. So, anytime they can get a break from the polo's, it's a good thing.

They are both doing great academically. Kenz wrote a story for one of her classes recently and was worried that the teacher had lost it because she had a zero for it on her progress report. But she found out on Friday that the teacher loved it so much that she had taken it to make copies of it because she wanted to save it for her future classes to read. It is a pretty funny story....I'll have to post it on here sometime. Kenz is a natural at writing.

Cierra is learning Spanish this year and is excelling. She is at the top of her class for reading and Spanish. She is growing up way too fast and has been begging us to shave her legs recently. Is she really that old all ready?! She is still having seizures, despite frequent med increases. I'm really starting to think that they should have investigated the cyst in her brain better when they found it 2.5 years ago instead of dismissing it as an incidental finding on the MRI. It might have saved her (as well as us) a lot of pain and suffering. Time will tell and we'll see what the week long EEG turns up in June.

Caden is doing really good. He is finally staying in Primary and class every week and as I posted last time, doing great in school. He is addicted to the Wii and anything Batman related. He is very literal and makes us laugh all the time. He is getting really good at imaginative play, but insists on having someone play with him all the time. It's too bad that I can't convince Megan and Tanner to move down here :)

I can rarely get Caden to look at the camera, so this is what you get

Tyler is doing good as well. When we went to Walmart last night, he got really excited about all the balloons and it sounded like he tried to say balloon. It was adorable. It sounded something like "ladlad....loooooo!" I really hope that he will start bringing his speech back soon. I am dying to hear him talk again. We bought him some Stride rites last week and he is all ready walking more steady and not in-toeing quite as much, so we are hopeful that his foot issue will correct itself.

I think I am finally ready to talk about all the other issues that we have been dealing with. I needed some time to digest them and be at peace with them before I could write about all of it. So here it goes. When Tyler was born, the hospital pediatrician told us that he had epicanthal folds on his eyes. They can be associated with some types of syndromes, but since he didn't have any other markers, they told us that it was nothing to worry about. Well EI is concerned that the folds might be an indicator that something else going on. They have referred him for an evaluation with the NM School for the Blind and Visually Impaired. They will be coming to our house at the end of March to check him out. The evaluator will be checking his vision (they are concerned that he's not seeing very well,) but she is also very knoweldgable about syndromes and should be able to shed some light on that situation. EI has also put in a referral for Tyler to have an eval with the ECEP team that comes down from Albuquerque once every few months. It is a team of doctors and therapists that can diagnose kids with a range of problems, autism included. Tyler is very social and I know if they evaluated him right now that they would NOT diagnose him with autism. He has some concerning behavior (near constant hand flapping and lots of tip-toe walking, lots of meltdowns, lots of spinning, biting, eating issues, language regression, ect) but he is SO social. We were hesitant to agree to the referral at first, but he won't be seen until late summer or fall because the waiting list is so long, so we figured that it can't hurt anything to put him on the list and see how he's doing when the time comes. If he is doing great, then we just pull his name off the list. The ECEP team includes a developmental pediatrician who is an expert in diagnosing syndromes, so they also encouraged us to allow the referral, so that she can see him and give us her opinion about his eyes and find out if further testing is needed. Tyler's eyes are unusual, but I love them. They are my very favorite feature about him.

Hanging in the Wiener-mobile

Tyler's hand is doing great. He can put all of his fingers to neutral with ease, but can't hyper extend a couple of them. The scar tissue is pretty thick in a few spots and his hand is still pretty sensitive. He fell the other day with his glove off and caught himself on the tile with bare hands and it stunned him for a second because it hurt his little hand to have such hard contact. I doubt that he will need surgery during our next visit to Utah, but I'm wrong a lot, so I guess we'll see what the surgeon decides. I'm hoping and praying that it will just continue to heal and never need any surgery.

Can you believe how amazing his hand looks?!

Caden's P/T Conferences

This has been such a crazy, emotional week! I completely spaced all of my homework that was due Tuesday night. I had it done, but never once even thought about going on the computer and submitting it. So, I have a few zeros now. No worries though, I'll still pass.

The kids had P/T Conferences this week, so they get a four day weekend. I went to Kenzie's yesterday, Cierra didn't need one because she is doing really good, and then I went to Caden's today. I have been worried about Caden's because his teacher and I don't always agree on Caden's progress and how he's doing. I know that he is doing great at school and making great progress, but he still has some serious learning disabilities that he will probably battle for the rest of his life. For example, Caden has every movie we own memorized. Not just I-watched-it-so-many-times-that-I-know-some-of-the-lines-from-it kind of memorization. He knows EVERY SINGLE LINE. He knows what voice that they say it in, he knows the expression that they have on their face when they say it, etc. But if you ask Caden what happens in the movie, he can't tell you. He can repeat all of the lines, but he cannot tell you the the basics of the movie. He knows, but for some reason Caden struggles with taking information in, processing it, and then explaining it in his own words. He also will use movie lines in place of his own thoughts or answers during a conversation. So you might think he's answering appropriately, but in reality, he's just repeating a movie line. This is something that happens at school and home frequently. Another example, if you ask him what an object is (such as a house or a bike or a leaf,) he can't tell you. He knows what they are, but he can't describe it to you. Right now in preschool with ten kids and three teachers, he is doing great. He gets a lot of personal attention and is excelling. But come August, he will be in school 7 hours a day, 5 days a week with 25+ kids and one teacher and we have been really stressing about it.

So I was worried going in there today. I was worried about kindergarten. I was worried that they were not going to renew his IEP without a fight and I was worried about Caden and what's best for him. I was pleasantly surprised when I got there and discovered that not only will they be renewing his IEP, they are working on getting him an aide that will go to school with him 1/2 day, everyday next year! I could not be happier. Caden will do SO good in kindergarten if he has an aide with him everyday. I feel like a huge weight has been lifted off my shoulders.

So nice to have some happy news this week :)


This is how Caden eats all of his meals lately. Breakfast, lunch, or dinner you can find him squatting on the table like some kind of jungle man, hovering over his food like someone is going to come along and steal it.

I have a couple of blog posts that I've been working on this week, but they aren't ready yet, so you get my ramblings instead. It's late and I can't sleep. So much on my mind this week.

When Tyler had his 15 month check-up, the pedi referred him to Early Intervention for an eval. I put it off because I really thought she was jumping the gun and that he was just fine. I finally called them and scheduled an appointment and they came last Tuesday. He definitely qualifies for services for various reasons. They also have some other concerns and have put in referrals for us to see some other providers. I don't really want to get into all of it. Or rather, I refuse to let myself think about it and be in reality about it. But basically, our Ty baby is struggling. I'll write more about it in the coming months when we see how things play out. We're hoping and praying that he's just having some temporary setbacks.

One of the things they mentioned was his "unusual gait" which I had failed to notice. They asked me to have the PT look at it at our next visit. I really thought they were making something out of nothing, but I asked him anyway. The PT had noticed the gait and had charted it and is keeping an eye on it. If it doesn't start to improve soon, then he will refer us to the orthopaedic surgeon. He believes that Tyler may have a bone deformity in his right foot. Lucky for us, there is a fabulous pediatric orthopaedic surgeon IN Carlsbad. We have so few specialists here, so if Tyler's foot does need to be worked on, we feel really blessed that it can be done so close to home.

The other kids are doing good. We had three snow days a couple of weeks ago and they loved that. It was too cold to go out and play in it (-15 with the windchill) so I don't have any pics, but we really did have a fun few days together. I love being their mama <3

Happy Vday!

The Best Medicine