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.

Our Sweet Babes

My friend Maria took these beautiful pictures of our sweet little babies a couple weeks ago. Sadie was quite a challenge! She wants nothing to do with her little brother so it was impossible to get a picture of them together, it was kind of funny. The only way Sadie would look at the camera is if we sang "Chin up" from Charlotte's Web. Thank goodness Maria knew all the words. She again proved to be my best, most patient friend. Thanks Maria! I love you to bits!

9lbs. 3oz of joy!!!

He's finally here! On December 29th at 9:31 in the morning Micah Ashley Smith II was born. Yes he was quite big but I knew he would be for staying in soooo long. The second time around wasn't as scary, still as painful, not as scary. I didn't do the "just kidding I really don't want to have a baby today" thing. I did the "okay let's get this baby out!" thing this time. I got to hold him right away and it's in that moment when you can tell your self it was all worth it. He is so sweet and cute. He's already cracking smiles. Sadie is indifferent about her baby brother at the moment. She will only wave in his direction when we ask her were he is, it's kind of funny. Micah and I are happily enduring through this new adventure. Having two now is an adjustment, but we can tell as soon as we catch up on sleep it's going to be fun!

Christmas

Sing us a song your the piano man.....

sing us a song tonight.