Curse you Bob the Builder (with shaking clinched fist held high)

Sadie gets really excited about things, to the point where it's to overwhelming to talk about. She dicovered Bob the Builder on Sprout one day and started to go around talking about all the characters. However when we try to talk about it with her she would yell "No No be quiet!" and put her hand over our mouths. My husband finally made a break through one day when he made a color accosiation. " Hey Rolley is green like your shorts Sadie" he said to her. She grinned the cutest grin and said "oh yes he is! Green like ME!" From then on we could ask her" What color is Rolley? and she would say "green like my shorts". That was all we were aloud to ask about Bob the Builder for another week. She slowly began to make other color associations as she started to like the other characters more and more. Now everything that is blue is "Blue like Lofty" If it's orange it's "Orange like Dizzy". The great thing is is that we can talk about this show she loves with her now and she will let us pretend with her (for a few moments) but it's better then not at all like everything else. So this is all great and good, her therapists are a little conserned about Bob the builder being mentioned in every instance and inserted into every song (isn't your favorite song " It's a Small Rolley after ALL") but I think it's a phase......................Oh Nicki it's the PRIMARY PROGRAM THIS SUNDAY!!!!!!!! CURSE YOU BOB THE BUILDER! So far practices have been short of a nightmare. You know how when you get overwhelmed and you just want to scream but you don't? Sadie feels that way all the time and she does. Her escape is Bob the Builder now so she randomly start to shrill out the Bob the Builder theme song in the middle of the program. "Follow the profit" is now "Follow the Rolley" and don't you worry Dizzy, Scoop, Muck, Loftey and yes even Pilchard find there way in every reverent sweet primary song. I sure hope the thoughts of the primary presidency match there nice simpethetic faces. I just don't know them that well to ask. It's not like they are going to ask me to kick Sadie out of the primary program, they love her. What would you do? Feel free to comment I'm so not easily offended. So far my plan is to just pray so very hard that no one notices and Micah will be on stand by if it's to overwhelming for her. Trust me I am really giggling at my dilemma. I will be sure to let you know how it goes down tomorrow.

Oh my Darlings

My Sister Holly took these sweet garden pics. Nina's garden was the favorite hang out spot this summer. Sadie loves watering cans and Bro loves dirt. I love oxy clean.

Sadie's hot wheels

I feel so blessed today as I am reflecting on Sadie's progress. She is doing so well! We recently got her this walker so she wouldn't fall down so often. She is doing much better at walking but her legs are still really tight. She can walk from holding place to holding place but if she falls she has to crawl to something like a wall or chair or me to get up again. She can't stand still or go from crawling to standing yet. This walker has been great. It has really helped her posture and helps her to be a little more independent(good and bad for me). She used to not get very far when she would try to run off but now she has wheels so watch out! It has a cool little seat she can sit on when she gets tired. It's also been great for practicing self help skills like getting dressed and putting on shoes. It's fun to see her at church with the other kids in her Sunday school class walk (or run) to the water fountain. She likes to sit in it during singing time so she can actually sing "head shoulders, knees and toes" without falling down. Now only if it had a seatbelt to strap her in:) The best part is that she loves to use it. The other day I took it out of the van and at the same time a little boy Sadie's age walked by with his mom and said "wow mom whats that? I want to ride one of those!!!" It was really quite funny. She will still have to get botox injected in her legs for a couple more years and then maybe surgery can help her.

Cognativly she is doing awesome. Micah and I say it's like we are getting to know a new child every six months. It's like mentally she was always there and listening we just couldn't break her out of her own little world. Now she argues with us and tells us what she wants for breakfast. The change is miraculous. She has so much language so quickly. Her mouth muscles still have a hard time forming some sounds but the conversation is there. She is so smart. I can't even convey how exciting it is to finally get to meet your nearly four year old child and have her interact with us and others. She calls for me and asks me to play tea party with her! Last year I could not even imagine that was possible. All the work and all the therapy has been so worth it! And it makes it easier to keep going and to do even more. We will never ever stop. Every day it gets easier and harder at the same time. As some things get better, new problems arise but we just keep adapting.
I will alway ask myself, "am I doing enough". I think all mothers ask themselves that no matter what. I'm not quite sure how to get away from that. I think there's a little calm space in my heart where I know Sadie is going to be just fine but the uncertainty in my head will always be there.

Last day of school

I really need to catch up on some blogging! Yes summer is nearly over and I'm blogging about the last day of school, oh well. Sadie had wonderful teachers at the Autism preschool program at Cottonwood. Her teacher Ms. Patty and her speech therapist among others on the team where so wonderful. You can tell when people treat there job like a job and when people love what they do and know that what they are doing matters. These ladies just have a special something about them not to mention mounds of patience. We have been so lucky to find people like this on our journey.

Sadie and Ms. Patty

Sadie and Ms. Nikki

My mama's day

I had a great mothers day! On Saturday I got to go to San Diego and get my hair cut by an old friend who happens to be genius with a pair of shears. I shamfuly admitt that it has been just shy over a year scince my last cut. So you can imagine how much fun I had checking it out on my computer camera, however not compeled enough to stop listening to my Dresden Files audio book and take out my ear buds. Hence the white cords coming out of my head.

On Sunday I got to sleep in... well I got to stay in bed anyway I can't reprogram for one day out of the year. Then I got called down for breakfast and was greeted with my sweet children and handprint artwork. On the way down stairs I found a little heart on every step with a drawing of Sadie's or one of there quotes like "hi mama whacha doin'?" or Brothers "YEAH!!" By the time I got to my french toast,eggs,bacon, and onion bagel I was all misty eyed. Micah and the kids (with a little help from Aunt Jacki) really made it such a special day.

Race for Humanity 2010

I just have to say thank you to everyone who contributed and supported us in the Race for Humanity! And thank you Nana and Auntie Julie for racing with us! We have started a tradition of supporting the New Vision Autism Center in the race for humanity. All your donations go into running this amazing center that helps parents like us figure out how to get the best services for autistic children like Sadie and is dedicated to educate people so more kiddos can have early intervention. So thank you soooo much for donating to our cause!!!!!

Nana and Bro Hi five'n

Auntie Julie and Sadie

Little Micah was just so exhausted from all the running he had to do

Nana and Sadie...... notice how I conveniently stay behind the camera when I am wearing spandex and no make up:)

Pink Milk

Yesterday I pranced up the stairs to collect a load of laundry while the children were so innocently sitting on the couch downstairs watching Yo Gabba. I was gone for two minutes, I swear two!! On my way down I was met by a pile of strawberry nestle quik dumped on the bottom stair and bro swirling an excited little finger in it. Sadie was then yelling "Bro took pink milk!" As I further investigated the crime scene I saw that she had reached onto the table, grabbed pink milk and a cup and sat on the family room floor to fill up the cup all the way with powder, it was then confiscated by baby Micah and he attempted to flee up the stairs. After cleaning up sticky kids and grabbing the shop vac I realized I really wasn't mad or even irritated I actually delighted in dealing with what I imagine is a typical kid catastrophe for once:)

Easter pictures......finally

Peeps for Breakfast

Like most I enjoy easter for the true meaning and all in spring time nature that echoes it. The new budding flowers, the baby birds and all thats fresh and new. My next favorite part is the clothes! I love easter dresses and all children's easter apparel! This year I did skip the dress for Sadie, she just falls down too often and I wanted her to enjoy the easter egg hunt in Ninah's (grandma Smith) garden. I love playing photographer outside! Never mind my hand or that my kids will never look at the camera at the same time!

Painting and having a reasonable hairday at the same time- amazing!

I'm so glad he loves this hat as much as I do!

Some day she really is going to be able to ride this bike but for now it makes for a cute shoe photo op :)

Bro is walking and Sadie is Blowing bubbles!!!

Yes! Our little Micah is WALKING!!! He just got up one morning and took some steps. Micah and I looked at each other with watery eyes. We both felt the exact same: Elated with his progress, relieved that he is developing normally and a tiny bit of sadness that Sadie still can't walk as well as he can. Mostly elated though! He is walking everywhere! He is so steady it's really quite amazing to me. He comes and grabs my hand to pull me places. He comes and looks for me when I'm out of sight. I can't help but love the attention:) He really is the sweetest child and gives me looks that melt my heart 200 times a day.

Next: Sadie is blowing bubbles!!! For some this may not seem to be much but if you new how long it has taken for us to get her to move her lips into the different shapes we use to speak, this is a major milestone! Today at physical therapy Sadie picked up the bubble wand and instead of her lips doing nothing while air blew out of her nose, she shaped her lips into a perfect "o" and a steady stream of bubbles came out the other side!! The best part was how proud of her self she was! Before I could say anything She said "I so excited!" (Thats what I say when she accomplishes something). She is just doing so well! She is starting to get out "m" sounds. Any movement of her lips has been hard for her in the past. She has low tone in her muscles there so normal things we do without thinking like drinking from an open cup and forming words are hard for her and she really has to concentrate. She is starting to say "mommy" really clearly but mostly keeps calling me "nie nie" I don't really mind I think I would be a bit sad if she stopped altogether.

All in all I really could not be happier right now. What on earth could be better then seeing these breakthroughs in your children's development. I can never take anything for granted it is all miraculous.

Once there was a snow man......

My sister, Jacki and brother in law Dave brought us home a special treat from Big Bear today! A truck load of SNOW!!! This is as good as it gets in California. Little Micah couldn't be happier. Sadie was conflicted, she didn't like her hands being so cold but she would not stop digging in it. Ahhh life is fun!

My rainy Thursday

This week I got my clearance badge to volunteer in Sadie's special day class. I went today. I cried all the way home.

Let me start by saying that the teachers are great. I really do think that they are doing all they can. There is just so many children and not enough hands. All of these children's disabilities are on so many different levels it's impossible to address their needs as a class. It was only one day. I know I need to give it another chance but there will be much pondering and praying about what to do.

When we got home Sadie kept trying to go outside in the rain. I could not get her mind off of the loud raindrops pinging at the window. I came down to put a child lock on the front door. Sadie started to protest, then looked in my eyes and said "Nie Nie want to say hi to the rain" she opened the door again and said "Hi rain" and waved. I then carried her outside to wash away all our worries.

Happy Birthday Bro!

It was Bro's birthday on Tuesday! We aren't officially celebrating until this weekend but his Uncle Dave came home with a little birthday cake for him. I can't beleive he's 1!!!! I just love this sweet little face!

Yikes it has been a while! This has been a shall I say challenging year. I miss blogging! The thought of catching up on every little thing seemed overwhelming so I'm throwing that idea out the window and will just share the major events to get me back on track. Lets start with Sadie, I know it's so unfair that I let everyone into our journey with her and then stopped blogging, I know I'm awful.

This summer Sadie was diagnosed with autism officially. I new it was coming but it was still hard to hear. Exactly a year ago from that day I was at the Orange county Children's hearing and speech center praying that my kid just had a hearing problem. I wonder how many parents tear up from disappointment when the audiologist tells you your child has perfect hearing.

At the time we were on a waiting list to see a good nurologist at Loma Linda. After battling the waiting list and many fine employees from our insurance company 4 months later we got Sadie in and the nurologist diagnosed her with Quadrapaligic cerebral palsy to explain her ridgid muscle tone in her legs and weakness in her upper body. The idea that Sadie had CP had been thrown around before but as always to have the actual diagnosis handed to you is a bit of an emotional experience. However hard it is to have answers it is so nice to have some of the peices to our little puzzle named Sadie. The neurologist told us that CP was most likely caused at birth when Sadie aspirated maconium and didn't have enough oxygen to her brain for a time. Her delays and autism symptoms are most likely because of this. From the begining we have been doing everything we need to be doing so her treatment plan will remain the same.

Unfortunately at age three The Regional Center (a state funded program that has been helping us financially with all her therapies) cuts off and your left the school district to help a bit with a preschool program with speech and physical therapy worked into it. This transition has honestly been heart wrenching for me. Sadie went from having a therapist in our home twice a day and me taking her to 3 additional therapies through out the week to a preschool class were I don't know what the heck is going on! I hate it! We are trying to figure out how to get Sadie additional speech and occupational therapy but it is all very costly. I'm sure there are those of you who can relate to the hair pulling sensation I am feeling when you can't help your kiddo because of awful insurance or lack of doe! It's sooooo frustrating!

On a positive note Sadie is making strides. She has become much more social and aware of familiar people. She had botox injections in her legs a couple months ago to loosen her muscles. Her feet went flat for a bit, it was amazing! They are starting to stiffen up so we are going to do the procedure again next month, hopefully. Seriously if you saw video of her 8 months ago and compared it to now you would be astonished! She is really starting to peak out of her shell!

Little Micah is great, Sadie calls him Bro so now we all do too. He is so loving and a crazy boy! I pray all the time that he will have patience and love for his sister as he grows older. I've started to think too far ahead about who will take care of her when Micah and I are not here anymore. Bro says "hi" all the time in the sweetest voice. It is so cute especially when your telling him "NO" as he is reaching for an outlet or any of the dangerous things he attempts. I realize now that people really do use the child restraint in the grocery carts and I now have a child that WILL climb the stairs. I almost have a heart attack 3 times a day from my little guy. His development is right on with everything except walking but he will get there I'm sure. I can now see that Sadie was behind from the very beginning but I didn't know because she was my first.

I feel like things will just keep getting better, it's hard to imagine what things will be like when Sadie is not a sweet little toddler anymore. I've been noticing the special needs kids who are much older and there steadfast parents and I think "wow they have been doing this for a long time and we are just beginning our journey". I will try to be better at keeping up my blog, it does help me and I hope it helps someone else looking for answers too:)

LOVE my kiddos LOVE my life!

I love my kids! Especially when they are both asleep at the same time! I just have to say that I have a great life! It's mostly because of my husband that my life is so nice, I just love him. He takes on all the extra things that I can't on top of what he already has to deal with, he lets me know how much he loves me nearly every second and he's the best father to our children. After watching and singing along to the Care Bear Movie II and putting Sadie to bed, Micah pulled out a new x box game. I had to put on my pouty face (it's expected), but secretly I knew it meant that I could play with photoshop. So I got to sit down tonight and play with some photos I took today. Aren't they cute!

Autism Run

I love how involved our families are. They are our best support system. I wouldn't be able to go through all this without them. A couple weeks ago Micah and I, along with my family ran a 5K for Autism in the Race for Humanity. It was super fun!

The babes just love their Nana and Papa

crazy Auntie Jacki

Papa's signature baby hold

Cassi and her boyfriend Steven (big keiss little keiss)

My 5k Champion

These kidlets are ready to go!

This baby is delicious!

Leg braces and breakthroughs

I'm sorry I've taken so long to update everyone on Sadie, your pestering emails just show how much we are loved (..heather). So much is going on but let me start with, Sadie is doing great and making tremendous progress. In this last week we've been down to San Diego Children's hospital twice. We finally got her leg braces. Sadie walks on her tippy toes. Most Autistic children will walk on their tip toes for sensory reasons. Sadie however cannot physically get her feet flat without major effort. Her muscles are way to tight (and for some reason there isn't a doctor in the world who can tell me why). These braces will help stretch her foot and aid her in walking which is getting better in better each day!
Next we had another MRI but this time of her spine to make sure all the nerves were working. We haven't gotten the results yet for that. This time she was given anesthesia with the mask and let just say that I was NOT prepared for that! I feel like it will just be another thing to rule out but this is what we need to do to solve the puzzle.

I FOUND A NEW DOCTOR!!! I found a doctor at Loma Linda Children's who specializes in more holistic approaches. When I told the appointment desk what happened to me with our last ped. she immediately recommended Dr. Katerie. I went in and he spent over an HOUR with me just talking about Sadie. Hello! I gave him her very thick pile of medical records and put a big picture of her on top of them so that when he pulls out her file he will remember my daughter or at least that she has a crazy mom. He asked me what I was willing to try to help my daughter overcome autism and of course I said "Everything!" So we discussed some biomedical treatments that he recommended and I had already researched. We also discussed vaccines. and although he is an advocate for the alternate schedule he wanted me to be educated on why I wasn't going to give Little Micah the shots. So he recommended a book (The Vaccine Book by Robert Sears) and wanted me to read it and when I came in again for Micah's appointment we would discuss my reasons. It was such a great experience I wanted to dance and twirl out of the office but I had sling full of baby and a sleepy toddler in the stroller so I refrained.

Last but not least I am Ni Ni. She finally has a name for me, calls for me, looks for me, I am crying just typing this right now. She lunges away from dad calling "Ni Ni" to get into my arms. I just can't get enough of her long past due separation anxiety. She actually gets sad when I leave and is excited to see me when I come back. She sits in my lap and looks into my eyes while she plays with my hair and babbles. These major break through s in the last month and a half have left my heart soaring. Micah and I are thrilled to pieces over very little thing our Sadie overcomes. We know the road will be long but things like this make it worth while.

EASTER BABES

My little baker

So I thought it would be fun for Sadie and I to bake some cookies together. I carefully set out all the ingredients in separate bowls so that she could help mix them in and so I could make sure I wasn't forgetting anything. She had a blast and I assured her that after her bath the cookies that Sadie and mommy made would be ready to eat. However to my dismay this is how they came out, totally flat, and yes I remembered the baking soda! Micah lovingly reminded me that this wasn't the first time my cookies have come out like this so I can't blame my assistant. She enjoyed one anyhow and I personally like the dough better anyway. So if anyone has a good recipe send it my way.

25 steps!!!!!!!

Sadie took 25 steps yesterday in physical therapy!!!!!!! She has also started to say AAHH OOO TEEEES!!! (Brush your teeth!) Soooo cute and the longest phrase ever!! We just love her! Her therapy and hard work is paying off! And little Micah is doing his job at looking cute and melting my heart.

I really dislike Doctors and I need more HOT water

The shower is my quiet time my only place to think. It's the place were no one bothers me. I can dream, cry , pray while practically burning hot water rushes over me. It's the 15 minutes a day I need to stay sane. Lately our hot water lasts about 4 minutes then goes to moderately warm and then on to cold. Hot water why have you forsaken me I need you! I know I sound ridiculous but instead of my meditation time I find myself wasting my shower wondering why the water isn't hot anymore.
The past week has been frustrating for me, (hence the reason why I need my lovely shower time). I went to my kid's pediatrician, Dr. Bakr, for little Micah's 2 month check up. I knew in my mind I was not going to give my baby any vaccines because of Sadie having possible Autism (they won't diagnose her till she is 3 ). I reminded the receptionist that I was going to hold off on the shots. I had both kids with me in the waiting room because I had to squeeze in the appointment in between Sadie's speech therapy and her physical therapy, in addition to her autism therapy we have every morning. Any how I was waiting to be called back when Dr. Bakr entered the waiting room and said " Mrs. Smith I don't see patients that won't take the vaccines" Now I have heard of doctors sometimes doing this but I didn't think it would happen to me. (Note to self if it can't happen to me: IT WILL!) I proceed to explain why I wasn't going to give the shots to my other child thinking he would understand. Nope, instead of understanding he replied with " Sadie has Autism?" My eyes were burning my jaw was clenched why was I still sitting there? He started to sense I was upset and proceeded to tell me vaccines don't cause autism, maybe he'll hold off on the MMR for a month, and he wasn't the one who gave Sadie her shots anyway. All I could muster up was " You have been her doctor her whole life" and then I left. I rolled my stroller out of the office with tears streaming down my face thinking, how can this doctor forget my daughter. I have been in his office a million times for referrals and blood test orders and really you can't remember my child! Yes he is the doctor that told me at 18 month I should not have any concerns about her not walking or talking or making eye contact. Shame on me for sticking with this guy! I just feel like a big idiot!
I understand (somewhat) why doctors don't want to see patients that won't take the vaccines. I am not going around saying that the vaccines gave my daughter autism. However I can't imagine the guilt I would feel if my son went through the same thing and I could have prevented it. In my mind and for MY situation it was too risky. I'm not terribly angry at the doctor for being really insensitive about the shots I'm livid because he could not remember my child and what she has to go through everyday.