Thursday, September 2, 2010

It's Been a While

So i got on this morning and checked my blog and realized, well, its been a while. So quick update cuz i gotta go get Maddox at the bus stop. Kylah did diabetes insipidus test, she is fine, no DI. They are almost positive she will have to take growth hormones, will find out next month. She is doing so great with everything! She is meeting most of her PT goals so we have changed PT appt to every other week. She is just doing so great! She is reading really great, but it is still with large print and not large congested paragraphs, so we will see what lies in store for her vision as the year progresses. She started 1st grade and loves it! She has a special little friend in her class that lives in the building next to us so she is super excited about that! I must say this kids is the most polite little guy i have ever witnessed seeing- even more manners than most adults! He came over yesterday and (the kids six) when we were leaving to take him home he went in- all by himself, i didn't even tell dru to come say bye- and shook dru's hand and told him it was nice to meet him (which he also did when he met dru). WOW!!!!!anyways, so new friends are fun, especially when they aren't punk kids! Maddox started PreK also this year. He loves it!!!but not as much as the bus!! He is 4 years old and has to ride with 11 year olds- scary. plus Kylah rides the special needs bus so he is alone on the big kid bus! I wonder what foul word he will come home with first....So the bus schedule didn't get set up till a week after school started. The first day of school, when picking maddox up-
"Hey so how was school today?"
"fun! Do we have the same teachers tomorrow?"
"yeah. Do you like your teachers?"
"Don't you like Mrs. ---?"
"no, she's mean!"
"Maddox, i know mrs.--- is really nice. Why do you think she is mean?"
"She won't let me ride the bus!"
I then explained how she wasn't mean but i said he couldn't ride the bus yet...
Second day of school picking Maddox up-
I get out of the car and walk over to get him. He is sitting down on the ground then starts to get up when he sees me. As he gets up his lips start to quiver and he starts crying. Why you ask? Because "I want to ride the bus!" This went on for one week people! Now he is happy and content because he is a "bus rider".
I will update on everything else, but i gotta jet! Church starts early in the morning!

Wednesday, April 28, 2010

I Am So Grateful

Hello Everyone! So i have beenthinking about how much i have been complaining on this thing about Kylah's issues. I apologize, that is definately not what i meant to do. On the contrary, i don't feel sorry for us, or hate having to go through all this stuff. These problems have been such a blessing in our lives, and more than that Kylah (and Maddox and Beckam) have been such a blessing to our lives. I am so grateful that she is mine. I am so grateful that she get the medical attention she needs. I am so grateful for all the wonderful programs out there to help her be the best she can be. I am so grateful Heavenly Father gave her to a loving supportive family- us! It all gets stressful and is emotionally hard at times but I am so grateful to have these experiences. We actuall just got back from the Endocrinologist and they think she might have Diaetes Insipidus and also that she might not be producing enough growth hormone. DI is different than the Diabetes that deal with sugar, etc. (my bro has had that kind for 30 years). We hae to do a 24 hour test at home then depending on that she will have to be hospitalized and have testing done there, this is a rare disease. Sad my girl has to go through this stuff but so grateful i can be going through it with her!!!!!!!!

Friday, April 9, 2010

The Inevitable...

So today Kylah was made fun of beacuse of her eyes. Sigh. I was not prepared for this talk with her just yet. Oh, the joy and worry of parenting! Oh, the innocence and difficulty of childhood! My sweet girl-

Wednesday, April 7, 2010

Reach Out

So like i said in the post the other day, i have been trying to get more involved in the special needs community since we are facing new things with Kylah. It is just a little frustrating considering that Houston is like a HUGE city- about 5 million in the entire metro- and there seems to be a lack of special events/programs/activities for these sweet kids. It seems that Austin/San Antonio area has tons of stuff and they have quite a few less people. Grrrr! BUT there seems to be some pretty cool stuff here too. Kylah takes Dance/Ballet classes at a dance studio down the street and it's FREE to special needs kids- how amazingly wonderful and unselfish of this studio!!!! It's so cute to watch. And she is starting the Field of Dreams baseball "camp" she did last year- which is such an AWESOME program!!! Anyways, i am trying to get out there, which is a little hard for me cuz i am more reserved and shy, another thing i am working on... So i know a lot of you are far away from Houston but I just wanted to give a shout out to a few great fundraising events that are happening around my neck of the woods (sort of)-
Pediatric Stroll for Strokes in San Antonio is May 22 and proceeds go to CHASA which is the non profit organization for kids with hemiplegia and hemiparesis (which Kylah has)
Pediatric stroll for epilepsy at the Houston Zoo is April 17th and proceeds go to the epilepsy foundation (Kylah suffers from seizures)
There is an amazing new "theme park" for special needs kids in San antonio called Morgan's Wonderland that opens April 10th. It's really affordable and special needs kids are free!!!
I think there are a few more events but sorry, i can't remember them. All these you have to register for but they are for great causes that personally affect my daughter. There is such little research on schizencephaly, SOD, pediatric strokes... Doctors just don't have very many definate answers for the parents of children that suffer this. Its just so awesome what these people and organizations are doing to help prevent and better support the special needs communities!!!! I can't wait till my family is in a position to better support these causes...but right now i can spread the word!

Monday, April 5, 2010


I just remembered that i have some pictures to post. One is from the Rockets/Lakers game Dru and I went to a few weeks ago. It was really fun! it was my present to Dru for last anniversary, his birthday, christmas...all roled into one. It is a picture of Dru's "boyfriend" or so i like to call Kobe. I don't know what all the fuss is about him...or any other player really for that matter. They are just regular people.It's beyond me. The others are of the kids this last month. Bon Apetit!

Bubble Girl

So Dru is gonna graduate in like 8 months. Wow. I am kinda scared. So my life has been student loans and all that entails, apartments, busy husband.... you get the idea. It's like i have ben living this temporary "fake" life and now i have to get back into "real" life. Where are we gonna end up? What does life have in store for us? We transplanted from WA to TX and now.... it's just kinda freaky. I have gotten comfortable in my little life here. Albeit, i am not a fan of Houston- I HATE THE WEATHER and i also would like a little smaller city. But we have great friends, awesome doctors and therapists for Kylah, nice neighbors, great ward family, great school and teachers for Kylah and soon to be for Maddox. I really would be happy if we could just freeze time, be poor students, but be this happy forever. My kids are all home at night. They still want to sneak in my bed at night. I am still their universe. They are still my universe. Me and Dru are still young. We are still in love. Life is good. I can not handle change. Its like when i was younger and we went to my grandmas for the weekend. We would come home Sunday and i would be having an anxiety attack cuz i didn't get any "down time" before i had to get back to school. I needed that extra day to just chill at home with my family. But this isn't a weekend at grandmas. It's like four years at grandmas and all of a sudden she kicks you out and you have to deal with the world now. I would be quite content to live in a bubble. Did i mention i hate change?

p.s. my grandma would never kick me out, she's too nice!

Thursday, April 1, 2010

Our Little Angel (one of three!)

I love all my kids with a fierceness! But i jsut wanted to focus on Kylah today. Two days ago I had this forceful desire to look up her conditions on the internet. As most of you know Kylah was diagnosed with Schizencephaly and Septo Optic Dysplasia when she was bout 9 months old. What this means is that she has a hole in her brain, and also her optic nerves dont function right and she could stop producing hormones anytime. Because of the hole she has low muscle tone and almost no control over her left arm/hands and a weak and slighly shorter left leg, it's hemiplegia/hemiparesis. Also she has seizures. Because of the funky optic nerves she has low vision and her eyes are always moving. Theses are a few things tht she has to dal with. But don't feel sorry for her, she's as smart as a whip! and has unmatched memorization skills! She is just the sweetest little gal. She is 6 and all her life we have just dealt with her conditions within our family and medical support. But she is getting older and wiser and well, i worry. She asked me the other night why her arm doesn't work like the other kids. I sat there and had to tell her that it's because it's her special arm. I told her that she is a child of God and that He knows and loves her and Heavenly Father gave her that arm because He knew she was strong and brave and smart and He needs her to teach that arm how to do things. She has to be the teacher (a thought that she loved) and help it learn to do things like her other arm. I kept reiterating that it was "special". So when I was done she said "So, the other kids' arms aren't special, only mine , right?" She is super smart but because of her vision she reads (which she is learning) and writes slowly and just sometime has a difficulty. She told me that this one little boy tells her she isn't smart (I do't nesecarily think it was personal but he is in a higher reading group and just a little stinker all around). Now I could freak out and call her teacher and rant and rave but, honestly, what am i teaching her if i do that? That she isn't smart, that i will always fix her problems, that she doesn't need self confidence! I must admit that at first I did want to call the teacher. So now when she comes home and says that i don't make a big deal. I just say, Kylah, are you smart? Do i think you are smart? Does your teacher think you are doing great? Does Heavenly Father think you aren't smart? Do you care what he says? He's just teasing and trying to make you mad. Since everyone that's important thinks you are fantasticly smart, should we pay attention to what he says? I want her to get used to automatically thinking she's great because kids are cruel. it's the same thing with her eye movement. when people say what's wrong with erh eyes- and yes people are that tactless- i just say matter of factly "Nothing. They are just different that yours." I don't ever want her to think that something is wrong with her, it's not! I make it such a priority to teach my kids that everyone is different and that it's okay to be different. I teach them that it doesn't matter what people wear, look like, if they are in a wheelchair, if they use a dog to walk,.... it's okay. People arent the same. I am the only one with blue eyes, so i use that as an example that everyone's eyes are different. My husband's skin is darker, everyone is different. She asked me last month "why did you marry someone with black skin?" (ha ha she meant dark) i said because i love him. but his skin is dark, why did you marry him? Becasue it doesn't matter what people look like if we love them. If you are reading this please teach your kids to be tolerant. It's okay to ask about peoples "disabilities" but don't be rude about it. I am not ashamed of my daughters problems, and i don't want her to be. I want her to be proud of who she is. I don't want her to feel sorry for herself. She can be just as smart, fast, funny, sweet, happy, confident, good at sports, as any other kid as long as she workd hard and beleives in herself! Help those around you beleive that too! Help all kids believe in themselves!
Lets give props to Whitney Houston (the pre-drug whitney houston)I beleive that children are our future. Teach them well and let them lead the way. Show them all the beauty they possess inside. Give them a sense of pride, to make it easier....

Thanks for your love and support!!!!

P.S. I just was about to publish this and Maddox just looked at me and said "you have a circle head"