After a million phone calls and endless hours spent on the phone I am happy to say I've made progress! Lilyana has her insurance back, will be starting school sometime in March, and will be seen at one office for all of her treatments. So much stress is relieved! I am so happy for the schooling mainly. She will do great and she's so excited. She even got her wish... to go to school with Naty! She'll be going there soon :)
She even pre qualified for some additional assistance that will help with schooling. I am stoked!!
Now to get through the next couple months and ton of appointments! Feb/March are busy busy busy!!
Miracles happen every day...
Friday, February 18, 2011
Thursday, February 17, 2011
Just some thoughts...
I love being a mommy. I Love the way my Lily smells after a bath. The way her eyes light up when she's so happy about something. I love planting with her, and doing dishes with her. I love how Wyatt gets so shy when someone talks to him. I love how he smiles, and how he only has eyes for me.
I enjoyed sitting tonight on the couch with my babies with books. I was teaching Lily letters in hear dry erase book, and bubba was looking at a chunky truck book. There was absolutely no where else in this world I"D rather be. Lily all squeaky clean and bubbs toothy smile made my heart so happy.
My husband home with me, me not worrying where he was or what he was doing. I love him so, and the way he smells is divine. Knowing he's ours, and that this is where he wants to be is the best.
My dogs are great, and I love them. They bring a lot of joy to the house too. I love them each in their own way, just like I do my babies.
Working in the garden today was so good for the soul. It made me feel alive. It reminded me that things grown, and change, and die, that things constantly change. It's something beautiful to share with my kids, and if the rows aren't perfect and the seeds aren't even... that's perfect. All of our imperfections make us perfect.
This is my happy thoughts for the day. I'll close by saying that the moon tonight is stunningly beautiful... if you get a chance go outside, look at it and think of me <3
I enjoyed sitting tonight on the couch with my babies with books. I was teaching Lily letters in hear dry erase book, and bubba was looking at a chunky truck book. There was absolutely no where else in this world I"D rather be. Lily all squeaky clean and bubbs toothy smile made my heart so happy.
My husband home with me, me not worrying where he was or what he was doing. I love him so, and the way he smells is divine. Knowing he's ours, and that this is where he wants to be is the best.
My dogs are great, and I love them. They bring a lot of joy to the house too. I love them each in their own way, just like I do my babies.
Working in the garden today was so good for the soul. It made me feel alive. It reminded me that things grown, and change, and die, that things constantly change. It's something beautiful to share with my kids, and if the rows aren't perfect and the seeds aren't even... that's perfect. All of our imperfections make us perfect.
This is my happy thoughts for the day. I'll close by saying that the moon tonight is stunningly beautiful... if you get a chance go outside, look at it and think of me <3
Wednesday, February 16, 2011
Another appointment down...
Well we had a follow up appointment after Lily's preliminary diagnosis. She does have Autism for sure. I guess it's the least severe, but more than just the PPD. I was educated today on looking for signs of stress. anxiety, and fear. Some of the things I was told were:
We have some insurance issues to work out, and then we'll be set, only seeing people at one practice instead of all over town. The endless phone calls will stop, and waiting on hold will be a thing of the past! Thank God!! People are quick to tell you something is "wrong" with your child & that he/she is "special needs"... but they AREN'T quick to help. Finally that will all be over.
Next step is getting Lily into a head start or preschool program where her learning and development with social skills can be assessed. I am excited for her to be able to start "school". She's been really enthusiastic & excited :) She wants to be like her cousin Naty & go to school :)
I am also taking a parenting class in march for parents with special needs children. I am REALLY looking forward to it. It's going to be awesome and I am going to soak up as much as I can during the class.
I don't know what the future holds, but I do know I have an amazing, smart, funny Lily Bee that I adore.
And if anyone out there is curious about Wyatt... he's doing great! Reaching all his milestones, learning new things everyday, teaching me new things every day. he is such a humble, sweet, east-to-please little boy. So full of sunshine & laughter. he's even talking now, and learning lots from his cousin Adam, and Lily.
Me? I am OK. I am taking it day by day, sometimes hour by hour. I have my moments, but by hell I am NOT going to let anything ruin my happy little family.
Ben is OK too. Tired & over worked, but OK. He's got his toys to keep him occupied, and he's got me for back up :)
Love & Light
- Lining objects up in a line over and over
- Rocking back and forth while repeating a sing word or 2 words phrase over and over
- Ritualizing things
- Becoming obsessive over a particular object
We have some insurance issues to work out, and then we'll be set, only seeing people at one practice instead of all over town. The endless phone calls will stop, and waiting on hold will be a thing of the past! Thank God!! People are quick to tell you something is "wrong" with your child & that he/she is "special needs"... but they AREN'T quick to help. Finally that will all be over.
Next step is getting Lily into a head start or preschool program where her learning and development with social skills can be assessed. I am excited for her to be able to start "school". She's been really enthusiastic & excited :) She wants to be like her cousin Naty & go to school :)
I am also taking a parenting class in march for parents with special needs children. I am REALLY looking forward to it. It's going to be awesome and I am going to soak up as much as I can during the class.
I don't know what the future holds, but I do know I have an amazing, smart, funny Lily Bee that I adore.
And if anyone out there is curious about Wyatt... he's doing great! Reaching all his milestones, learning new things everyday, teaching me new things every day. he is such a humble, sweet, east-to-please little boy. So full of sunshine & laughter. he's even talking now, and learning lots from his cousin Adam, and Lily.
Me? I am OK. I am taking it day by day, sometimes hour by hour. I have my moments, but by hell I am NOT going to let anything ruin my happy little family.
Ben is OK too. Tired & over worked, but OK. He's got his toys to keep him occupied, and he's got me for back up :)
Love & Light
Sunday, February 13, 2011
Friends & Family
Having friends and family around is so important. I didn't know just how important for most of my life. I adore my friends and family. They set my head straight when I am loosing my marbles, and they aren't afraid to tell me what they really think even though it may hurt. They don't criticize and they don't lie. I thank so many people for being there for me through thick and thin... even though sometimes I don't deserve it :)
This has been an amazing weekend. One I won't ever forget. I got to spend time with so many people that care about me & my little family... and I of course care about them all. There's nothing better than getting the kids fast asleep after a loooong day & sitting by a fire till 3AM. I wish nights like that happened so much more often. It was so nice to look at stars, feel the warmth of the fire on my face, and talk heart felt conversations with those who are in the same place as I am. Listening to others hopes and dreams, fears, and demons has made me realize I am NOT alone. Not alone in the least. Everything I go through they go through with me.
It's also made me realize that things could be so much worse. Things aren't bad at all really. Lilyana Lee is an AMAZING little girl. So happy, so smart, so devilishly funny, so caring, so cheesy at times. There is nothing WRONG with her at all, she just needs some extra attention & support & love... and hey, who doesn't?! I know that things may be a little difficult with her having PDD. It's NOT the end of the world. It's not life threatening. I will still get to wake up seeing my Lily bee's radiant smile, eyes full of sleep, saying "good morning mommy"every single day. I get to tuck her in at night, kiss her, and say sweet dreams to her every night. Nothing is going to change. She's still mommies baby girl. My special girl that made me a mommy.
I was doing what I didn't want anyone else to do. Judging her, looking for any little thing to say "oh I see what the doc's meant now". I was looking at her differently. Having some sense talked into helped so much. All of her aunts & uncles... Santa Cruz side & Samples side have ALL told me to stop dwelling and get on with it. Stop living in fear and stop treating her different, and move on. All I can say is they are right to a point. I am going to stop the negative out look and focus on the positive. I am going to do what I have to do with Lou Bee.
I think it's going to be a bad night. She went to bed very agitated and irritable. We'll see. Hopefully the Clonidine works tonight and she sleeps well. She had a busy day with her cousins & Grammy at the gem show. Lily even picked out her own little rock fish and rock donkey.
Thank you everyone. I truly love my family (Samples/Santa Cruz) & my friends.
This has been an amazing weekend. One I won't ever forget. I got to spend time with so many people that care about me & my little family... and I of course care about them all. There's nothing better than getting the kids fast asleep after a loooong day & sitting by a fire till 3AM. I wish nights like that happened so much more often. It was so nice to look at stars, feel the warmth of the fire on my face, and talk heart felt conversations with those who are in the same place as I am. Listening to others hopes and dreams, fears, and demons has made me realize I am NOT alone. Not alone in the least. Everything I go through they go through with me.
It's also made me realize that things could be so much worse. Things aren't bad at all really. Lilyana Lee is an AMAZING little girl. So happy, so smart, so devilishly funny, so caring, so cheesy at times. There is nothing WRONG with her at all, she just needs some extra attention & support & love... and hey, who doesn't?! I know that things may be a little difficult with her having PDD. It's NOT the end of the world. It's not life threatening. I will still get to wake up seeing my Lily bee's radiant smile, eyes full of sleep, saying "good morning mommy"every single day. I get to tuck her in at night, kiss her, and say sweet dreams to her every night. Nothing is going to change. She's still mommies baby girl. My special girl that made me a mommy.
I was doing what I didn't want anyone else to do. Judging her, looking for any little thing to say "oh I see what the doc's meant now". I was looking at her differently. Having some sense talked into helped so much. All of her aunts & uncles... Santa Cruz side & Samples side have ALL told me to stop dwelling and get on with it. Stop living in fear and stop treating her different, and move on. All I can say is they are right to a point. I am going to stop the negative out look and focus on the positive. I am going to do what I have to do with Lou Bee.
I think it's going to be a bad night. She went to bed very agitated and irritable. We'll see. Hopefully the Clonidine works tonight and she sleeps well. She had a busy day with her cousins & Grammy at the gem show. Lily even picked out her own little rock fish and rock donkey.
Thank you everyone. I truly love my family (Samples/Santa Cruz) & my friends.
Saturday, February 12, 2011
The truth about Lily...
http://kidshealth.org/parent/medical/learning/pervasive_develop_disorders.html
So, my Lilyana has been diagnosed with Pervasive Developmental Disorder. An Autism spectrum disorder. I wasn't so sure I was going to tell everyone for fear of the backlash, snotty comments, and whatever. But, i feel the need to let my friends and family know whats going on so that they have a better understanding of why Lily acts out the way she does, and so that she's approached differently when her behavior isn't appropriate. There are going to be many many changes around my home, and the way we all act & interact with everyone.
We are just now in the "finding out" phase and I am having a harder time with it than Ben. I have been very very depressed and unmotivated to do much of anything. The house, laundry, yards, and cars are a mess. I have a lot on my plate. I am the primary caregiver and decision maker for the kids, and it's all on my shoulders for evaluations and appointments. I am thankful that Ben is being so supportive and that he's here for me to lean on whenever I need him.
I don't want sympathy, or condoloences...I just want support and friends. I love my Lily and I am going to do everything in my power to make sure that she's treated properly and has the best possible life. I am going to post updates and appointments and just every day trials and tribulations here. Some may be depressing, sad, happy, silly, or whatever :0) This is my blog, this is where I am going to come to say whatever I feel at the time.
I love all my friends, internet ones, and ones I see everyday. Input is appreciated very much... BUT judgement is not. If you have any questions feel free to ask.
Love to all....
So, my Lilyana has been diagnosed with Pervasive Developmental Disorder. An Autism spectrum disorder. I wasn't so sure I was going to tell everyone for fear of the backlash, snotty comments, and whatever. But, i feel the need to let my friends and family know whats going on so that they have a better understanding of why Lily acts out the way she does, and so that she's approached differently when her behavior isn't appropriate. There are going to be many many changes around my home, and the way we all act & interact with everyone.
We are just now in the "finding out" phase and I am having a harder time with it than Ben. I have been very very depressed and unmotivated to do much of anything. The house, laundry, yards, and cars are a mess. I have a lot on my plate. I am the primary caregiver and decision maker for the kids, and it's all on my shoulders for evaluations and appointments. I am thankful that Ben is being so supportive and that he's here for me to lean on whenever I need him.
I don't want sympathy, or condoloences...I just want support and friends. I love my Lily and I am going to do everything in my power to make sure that she's treated properly and has the best possible life. I am going to post updates and appointments and just every day trials and tribulations here. Some may be depressing, sad, happy, silly, or whatever :0) This is my blog, this is where I am going to come to say whatever I feel at the time.
I love all my friends, internet ones, and ones I see everyday. Input is appreciated very much... BUT judgement is not. If you have any questions feel free to ask.
Love to all....
Friday, February 4, 2011
Light in the chaos
Yesterday was a good day. I got up freezin my butt off (we had no heat) and quickly bundled my 2 sweet bundles. I got a lot of things done that I wanted to, and after I sat down on the couch last night I had a moment to reflect back on the day and it was good. I was EXHAUSTED tho, but it felt good because I was tired from doing stuff, not trying to manage a rambunctious 3 year old :)
I changed up the norm last night for her to see if it made a difference. We had "down time" to relax. She had a very warm shower, new PJ's, cartoons, and a bedtime story. Oh, and no pills :) She went to bed with out a hitch, only got up twice through the night to ask for more juice. No screaming/crying/panic.... She's still asleep, resting on her own with no pills from the doc. That makes me SMILE.
Daddy & mom helped us get our furnace fixed yesterday. Thank God!!! It was soooooo cold! It works like a charm and that is a lot of stress of my back.
I am loving how things are turning for us. Just one good day in the midst of all the chaos has helped me so much. I guess praying really does help. I have been trying for months now to bring my husband back to God with no success. Only sarcasms and what ifs and whys. Well When Lily had her BAD tantrum the other night Ben prayed. He said he prayed harder and more humble than he ever has. So my Lily brought her daddy back to God. That made me so happy.
I have to believe in something because I can not do this on my own...
I have so much more to say here. I know lily will be up soon and the house will get busy. I will add to this blog I think.... but this is my update for now
I changed up the norm last night for her to see if it made a difference. We had "down time" to relax. She had a very warm shower, new PJ's, cartoons, and a bedtime story. Oh, and no pills :) She went to bed with out a hitch, only got up twice through the night to ask for more juice. No screaming/crying/panic.... She's still asleep, resting on her own with no pills from the doc. That makes me SMILE.
Daddy & mom helped us get our furnace fixed yesterday. Thank God!!! It was soooooo cold! It works like a charm and that is a lot of stress of my back.
I am loving how things are turning for us. Just one good day in the midst of all the chaos has helped me so much. I guess praying really does help. I have been trying for months now to bring my husband back to God with no success. Only sarcasms and what ifs and whys. Well When Lily had her BAD tantrum the other night Ben prayed. He said he prayed harder and more humble than he ever has. So my Lily brought her daddy back to God. That made me so happy.
I have to believe in something because I can not do this on my own...
I have so much more to say here. I know lily will be up soon and the house will get busy. I will add to this blog I think.... but this is my update for now
Wednesday, February 2, 2011
I am lost
I haven't been completely honest w/myself. I am stressed to the max. I am depressed. I am feeling sorry for myself. I am lonely, and I feel like a failure. I am over weight, lazy, sarcastic, and a bitch. I treat my kids like shit a lot of the time, I treat my husband like shit, and I don't know how to stop. I want to change, I need to change, I have to change.
My Lily is going through something major that I don't understand. She is so angry, full of anxiety, mean, sad.... She's just gotten worse and worse. I have done everything I know to do, and now there's nothing left but a psych evaluation that I really don't want to take her to, and medication that I feel isn't working.
She has these horrid horrid night terrors/tantrums. Last night was a bad one. She was completely rigid, screaming, crying, launching herself from one side of her bed to the other. She was screaming so loud, her eyes rolled back so all IO saw was the whites, and her little head thrown back.... gut wrenching screams coming out. I was mortified!!! I begged/asked what was wrong, what happened, why are you crying, tell mommy. NOTHING worked till she passed out from sheer exhaustion. What's a mother to do?
I even saw it coming on :-/ I just couldn't stop it.
I have to ignore my son a lot. I have to leave him be a lot. Lily takes so much time. I am so tired. I feel so bad for her. What am I to do?
Her appointment is on the 8th. We shall see eh? She has labs that I am waiting on, soooosoooo much to take in. I am lost!
My Lily is going through something major that I don't understand. She is so angry, full of anxiety, mean, sad.... She's just gotten worse and worse. I have done everything I know to do, and now there's nothing left but a psych evaluation that I really don't want to take her to, and medication that I feel isn't working.
She has these horrid horrid night terrors/tantrums. Last night was a bad one. She was completely rigid, screaming, crying, launching herself from one side of her bed to the other. She was screaming so loud, her eyes rolled back so all IO saw was the whites, and her little head thrown back.... gut wrenching screams coming out. I was mortified!!! I begged/asked what was wrong, what happened, why are you crying, tell mommy. NOTHING worked till she passed out from sheer exhaustion. What's a mother to do?
I even saw it coming on :-/ I just couldn't stop it.
I have to ignore my son a lot. I have to leave him be a lot. Lily takes so much time. I am so tired. I feel so bad for her. What am I to do?
Her appointment is on the 8th. We shall see eh? She has labs that I am waiting on, soooosoooo much to take in. I am lost!
Monday, January 17, 2011
I hate you, I hate you, I hate you
You took my Mother from me...
You took my Aunt from me...
You are taking my brother from me...
How miserable you have made our family
All of the time stolen
All of the pain and heartache caused
I hate you so much it makes me burn inside
I live in fear of you everyday
You will not stop until you've stolen them all
You won't have my son
You won't steal my heart, my love, my memories
You won't rob us of our time
How many more lives do you have to steal?
How many more dreams will you shatter?
How many does it take...
I HATE you Cystic Fibrosis
Saturday, January 8, 2011
Jan 8th 2011
Lots to do today. I don't really feel like doing it all, but it's my job... or that's what Ben would say. Guess I agree with him to an extent... but everyone else gets a day off, why not me?
I am going to go grocery shopping & also to buy a present for Lily's 3rd birthday. It's a very exciting time for me. Kinda bittersweet when I think about it. I don't want her to grow up & i do want her to. I am so tired of these terrible 2's, and her anxiety & aggression. But in the same sense I can still hold her close, smell her hair, smell her morning breath, play with her, and be a part of her world. She's still my baby, still comes to Mommy when she's sick or hurting, or when she needs anything. I dread the day when that changes. For all of the things that annoy me there are a million things I love about her. There are a million things I will miss when she's grown and moved on. Gosh... my baby is turning 3.
My bubba's is going to go into his "big boy bed" tonight. It's actually his crib converted to a toddler bed. STILL, it's a big step for us and I am excited.
Pretty nifty lol. It's bittersweet here too because he's my last baby, and he's a toddler now. Wow!! Well I love my babies and thank God for them <3 I am going to make it a point to cherish even the smallest thing. Call me cheesy.
Wednesday, January 5, 2011
My big news....
I am going to go to college on Jan 26th and sign up for summer classes to become an RN!!!!!!! I am so happy! The appointment is to do a plan and select classes and such. In a couple years I will be a Registered Nurse. It has been a dream of mine since I was kid!!! I am so nervous, scared, worried I am too old etc, but I am NOT letting it hold me back, and I will do this!
I took Lilyana lee & Wyatt to a Christian preschool today called "Victorious Beginnings". I am going to get them enrolled and signed up for when I start classes. Lily LOVED it there. We did a tour with Daddy & Bubbs. She just kept saying "I wanna go to school, I wanna play". It was GREAT. Made my reservations about daycare/preschool lessened. It's a Christian based school that teaches morals, values, bible stories, etc... best part? It's literally one street up and over from my house! Yes, they are DES certified, so I will be applying for that as well.
I have also been thinking about church, going back, at least on Sundays. I think I can make time for God one day a week seeing that he took the time to create me <3
Everyone pray for us that we continue to pull out of the rut were in, and I swear I will do my absolute best to become an AWESOME nurse <3
Sunday, January 2, 2011
2011...
is going to be all about me and my family. What makes US happy, healthy, and whole. 2010 had too much bad memories, problems, drama, and crap. 2011... here we come!!!
I have many plans for this year. Possibly starting school, working on my weight, working on my food addiction, working on being more patient & kind. I want to be able to let go of those who have hurt me deeply, and I want to not dwell on the past. I want to hold close those who love me, and stop feeling sorry for myself. I want to have the balls to tell people what I really think, but the kindness not to intentionally hurt feelings. These are not resolutions, these are just my hopes. I am going to try my best to reach these goals.
I am going to start working on my weight soon. I am buying an exercise bike from my BFF. I am going to try very hard to ride at least an hour per day & then start doing miles :P I think w/the encouragement and support of family & friends I will stop myself from hitting 250.
I am hoping Ben gets his Toyota running & 4 wheeling capable, I look forward to outdoorsy things & fishing w/the family. I'd like to keep the kids as active as possible and out of in front of the TV.
I hope to be a better, more understanding daughter. I hope to be able to look past lots of things that I have a tendancy to dwell on . I don't want to let the petty things bother me. I also want to embrace the Santa Cruz side. They truly love me and I believe there's good in everyone in the family.
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