Updates on my beauties

So it's been forever since I've updated. Everything has been going great here the past couple of months. Evie has been diagnosed with ONH (optic nerve hypoplasia) along with the albinism. Yes, lots of people with albinism have ONH, about 20%, and Eves is one of the" lucky" ones that it effects. We got the diagnoses last fall but weren't given any info or help until the last few months. We were told at first that it's not the same with albinsim kids, that it doesn't effect them. Uh, I would beg to differ in Eves case. It most definitely effects Evie. It's been awesome to finally get some help and have confirmation on the things that Shane and I already knew.   She is on the very mild end of the spectrum. What we notice is that it effects her alot on the behavior end of things. She has trouble regulating her emotional response to things at times, she also has mild autism like symptoms, echolalia (repeating words and sounds, ie an ambulance sound over and over and over). We are having her monitored by an endocrinologist to verify that she is producing growth hormone. There are a few other things also. It's been nice to have a partial reason to put with some of her behaviors. Although Eves is crazy stubborn, determined and energetic there are times when it doesn't matter what Shane or I say or do she is just not going to process it at the time. Our early intervention teacher has been an absolute God  send. She has given us some tools to help when Eves is having trouble processing, joint compressions, letting her hang on our arm or by a bar, rubbing a comb down her arm, tight hugs, backing off on things when we notice that she is getting to a point where she is going to have a break down because she is stressing about it too much. These tools have made a night and day difference in Eves. We aren't getting 3 hour non stop screaming and crying outbursts that we can't stop, she is listening better, connecting with us, asking for loves and hugs, talking and communicating more. She is like a different kid in so many ways. It explains so much about her reaction to us when we first got her. I only wish we would have known about this so much sooner. I think it would've saved alot of heartache on all of us.
Jaili and Evie are doing amazing together. There is nothing like watching your kids play, get along and love each other without a care in the world. Jaili has been taking the big sister duties very seriously. Sometimes too much, as I have told her she cannot send her sister to the no no wall.
 It's been almost 1 year since Eves was brought to our family and what  a difference a year makes. We continue to work on things everyday. There are good and bad days but Evie finally accepts us and loves us as her family and she is the most wonderful addition to ours. There is never a boring day in our house, Eves makes sure of that : ). There have been many times where I wondered if this was really the path that God chose for us or did I rush things. It's hard having day after day after day of tantrums and constant reminding of not to touch this or stop doing that. You feel like nothing is getting through and at times when she's having some of her processing problems it's not. But it truly a miracle to me to see how  my doubts have faded. It's a miracle to look into my youngest daughters eyes and know that she was meant to be with us. That she is as much a part of me as my own flesh. That she is home, with her family and that I love her so entirely and completely. My relationship has been like a crockpot with Evie, slow to cook but man you get something pretty fantastic in the end. Jaili's more like a BBQ, you don't have to see it cook to know it's good, it just is and always will be. Good thing crockpot and bbq dinners are my favorite. (I'm hungry, can you tell)

The girls are 2 of the most beautiful, complex, wonderful people I've ever known and they are mine and my husbands daughters! I'm not sure why we were so blessed with them but we were and I am thankful every second of every day that God picked US to guide them through there lives. It's a miracle to look into Jaili and Evie's eyes and see the love of God shine back at you. Looking at the love and happiness in their faces is like looking into heaven. It is so bright and beautiful that you can't look away and makes your heart want to explode with the amount of adoration and love that you feel. It fills me with  purpose in my life to keep heaven in their eyes..

Sorry I got all gushy there for a minute. As I was writing I realized just how far we have honestly come and I was overwhelmed with emotion for a bit.  On that note I will end for today. I'll update when I feel the urge again.

Our lovely Evie June

Sisters :-)

Little diva

Sleeping beauty

Eves new cane :-)

Just a few new photos

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So I will post more about our little ladies' birthdays and Eves eye surgery (which went amazingly well) later but thought I'd put up a few new pictures. Enjoy!!! Sorry the layout of these sucks, I cannot figure out how to get them where I want them for the life of me!

Eves talking

So this is my 2nd  attempt at a video with Eves.  Anywho..here she is. Oh and the scab under her nose is from taking a header off the sandbox into a landscaping brick. Another unfortunate side effect of not much depth perception. She's a trooper though, a few tears and then back to playing again : ) I'll try and post a video of Eves and Jaili bird next.

Eves

I apologize for not updating much. Honestly I hate being on the computer for longer than 10 min (unless it's shopping  : )  )  So , Eves has been doing absolutely amazing  She is such a happy kiddo. She actually walks around the house singing "Hap Py" (she turns it into 2 different words) Her motor skills are incredibly good, which is amazing because her sight isn't. She is ahead of development and is extremely coordinated. Her language is also going really well. Some things are still in Chinglish (I love you is, I ni ni) and lots of other random things we get about 25% of but on the whole we understand most of what she is talking about. So sort of like the average 2 year old : )  She has the biggest personality ever. Constantly making people laugh, which in turn makes her laugh. Eves and Jaili are also starting to play which I LOVE watching the  2 of them running through the house giggling. It's awesome.
We had to reschedule her eye surgery because she got a double ear infection,so now it is for Dec 9th to align her eyes and slow down her nystagmus. At the last eye appt she did fantastic and they now estimate her vision to be in the 20/200 range with glasses instead of the 20/700 range. I will be interested to see as she gets older what it truly is. The only time we notice she has an issue is definitely with depth perception ( still wacks her head on lots of stuff and falls off the steps, deck, curb, etc) As for her day to day stuff she just cruises right along. It doesn't stop her in the least. She is certainly our dare devil.
When I think of everything that she has gone through and to see how much she has changed just astounds me. Jaili changed alot also but her transition was much easier. She was younger and in an orphanage. Jaili also attached differently to us. Jaili was more internal with her feelings Evie is MUCH more external.  When we first got Eves I was in shock, I thought maybe we had made a mistake. It was so very difficult. She was grieving very hard for her foster mother and was not about to make friends with us in any way what so ever. I never felt this way with Jaili. I think I assumed that I would feel the same for both kiddos. It has taken me awhile to realize I don't have to feel the same. I feel differently about the 2 of the them. No less or No more just different. I Love them for their differences now. I have 2 kids that are polar opposites and are both the most wonderful, beautiful and exceptional children in the world  ; )   6 months later Evie has added so much love to our family. She is a little spit fire. I know that God picked her just like he picked Jaili to be our child. I can't imagine our lives without her in them.

Anywho, I'll try to post a video of Eves dancing (which is her favorite) and more pictures of our little lovelies!!!

Evasaurus

 So...I haven't posted in awhile because as you would guess, having 2 kids is WAY BUSIER and harder than one. At the end of the day (on my days off) I look around the house and think "Where did the day go?" I know I actually did stuff because I'm tired but if you look at the house no one would know. Having 2 tornadoes of mess does not equate to a clean house. Everytime I turn around there is yet another mess and it's generally in the place that I just cleaned. Even as I type this I look down and Evie has just thrown a crumbled up muffin on the floor that I just swept. Seriously???
Anywho, kiddo's have been doing fantastic!!! Evie is adjusting wonderfully and we are adjusting to her and the fact of having another baby in the house : )  It is such a stark contrast to the days when we first got Eves. I can't believe it's only been 3 months and how our feelings have changed. When she was placed in our arms and the consequent screaming, hitting, hair pulling, pinching directly at me for the next month I thought we had made the biggest mistake. I didn't understand, if she is supposed to be our daughter than why was this sooooo difficult? I couldn't understand Evie, I didn't get how she worked. I didn't have that immediate bond, the feeling that I just knew she was our child like I did with Jaili. It was the opposite of Jaili in everyway possible. It amazes me to think that only 2 1/2 short months ago I felt we had this little stranger who I didn't really care for living with us. I did the obligatory things to care for her and love her but the feelings were not there. It was a fake it till you make it thing. I apologize if I offend anyone reading this but I'm not one to sugar coat things. I believe in getting things out in the open and not hiding behind pleasantries.  I hope that other people can read this who  are in this situation and realize they are not  alone. Not all adoptions are bunnies and sunshine when you meet your child. Sometimes it's hell and fire. We had both. But I can say WOW what a difference time, patience, love, understanding, PRAYER, good support system and a commited family make.
I cannot imagine our lives without Evie in them now! She fits us so perfectly. It has been lots of hard work and continues to be but I can see the change and growth in Evie. She is becoming our child and not the little stranger in the house. The thing is that when you adopt a child who is not a little baby anymore and was raised by their foster parents they are little strangers. They don't have your habits, your personality quirks, your way of doing things. They have the foster parents or the people they have been raised with and around. It takes time for everyone to adjust. Evie is very sprited and had no discipline and didn't make eye contact on top of everything also. Shane and I needed to learn to adjust our parenting to suit Evie. We work with her everyday on looking at people (even if she can't see them) to make more eye contact (which she is doing GREAT at), we have to be not as lax's with Evie on redirecting her behaviors (Jaili is a point and shoot kid, especially now...Evie is a pusher of all things). I can honestly say that I LOVE Evie's spririt. It can be challenging, but I wouldn't want her any other way.  Eves is exuberant about everything. She is a very passionate little individual. She is loud, boistrous, happy, loving ,determined and stubborn. She is like the sun. Hot and intense but there is no comparison to warmth and life that it provides. I feel like I have the best of both worlds with my 2 girls. Jaili is thoughtful, analytical, extremely compassionate and has an understanding of things so far beyond her years it's almost creepy. She is me in a 4 yr old's body, I understand her with every cell in my body. Evie is so much more like my husband...constant energy : ) It takes more energy and patience on my part to  understand her but she is so worth it. I have a strong connection to Eves now, I'm getting what makes her tick. Oh and she gives the best hugs in the entire world. Full body conforming,arms around the neck, all encompassing hugs. They are Evie. All things done by her are at the fullest capacity.
Evie and Jaili are getting along like true sisters, fighting one minute loving each other the next. We've had lots of talks about respecting eachother and how we treat and talk to our family. Eves language is also developing so amazingly fast. She understands EVERYTHING we say to her now. She also says mommy, daddy, jei,jei, i did, sorry, thank you, drink,food, puppy, pillow, bunny, berry, that, and some more things that I'm not remembering now. As for her eyesight, we have another appointment at Casey Eye Institute in Sept to talk about surgery for her crossed eyes and nystagamus. They are estimating her vision to be about 20/700 with glasses so pretty bad vision. The only time you notice it though is when she is looking at books, she can't see the t.v., and when she is running and playing. If we get to far out of her eyesight she just sort of gazes into nowhere and listens for us. Not saying she can't run and play (she does everyday) you just have to be aware that you can't get more than about 50-60 feet away or she won't know where you are. I'm curious to see as she gets older for her to tell us what her she can see instead of just making educated guesses. Anywho, that's the ladies in a nutshell for now. We have 2 fantastically great kiddo's stubborness and all (for both of them). I added a few pictures that I've taken on my phone.

This is what happens when I'm in the shower :-)

Teeth cleaning time

Our little explorer

Pirate Pete

Dual action no no wall :-)

Few pictures of our Sweet Evie June

Just thought I'd post a few more pictures of Evie. She is growing by leaps and bounds in everyway possible. Full of love for all of us. Not to say that we don't have a few tantrums, but she's 18 months old, too be expected. She has had a pretty big turn around. Actually prefering to go to me most of the time. She is one feisty and EXTREMELY lovey kiddo. She's also talking and singing like crazy. She is saying mama, dada, up, please, down and drink with signs most of the time. Anywho, I'll write more when I have more time. Going to a mom's only dinner tonight...YEA!!! Oh and a huge thank you to my cyber friend Tonya. Seriously girl you are a LIFE SAVER!!!!! Your advice has helped me so much with Evie. You can check out Tonya's cutie pie Matti on her blog. I have a link posted on the side.

The picture with her and the monkey cracks me up because it looks like she is about to throw down. The monkey would not win!! Then the one with her looking down and the wings also makes me laugh because she is about ready for take off. Pretty much the only reason why I put those two on.

2 steps forward....2 steps back or 8

Yes, I hope Paula Abdul is going through everyone else's head now also.....I take 2 steps forward, you take 2 steps back. We come together because opposites attract. Yea you know. It ain't easy it's a natural fact...blah blah blah. Oh yea and I'm totally dating myself...whatever.
So yes you guessed it" the Goat" (you may know her as Evie) took several steps back tonight. Oh I'll explain why we call her " the goat" or Goatie LaRue in a later post. Anywho, back to tonight.
I'm not even sure what or why it happened. She had a great day today! She did awesome, played with Me and Shane today quite a bit, woke up happy. Through a fit mid morning a hucked cherrios across the car but that's kind of normal for her (at this time), then at about 5:30 out of nowhere she just started first screaming at both Shane and I then it escalated beyond control. Do you know how hard it is to sit and hold an angry, fighting, upset, sad, screaming animal of an 18 month old for 2 hours?? (question is rhetorical) Oh yea 2 HOURS of this! She first refused to even look at me, then refused to touch me, then arched and howler monkey screamed to try and get away from me. We are doing holding time therapy so that was not going to happen. Then she would start to calm down then as soon as I asked her to look at momma's eyes and held her hand to touch my face the whole thing would start again. To top it off just for good measure she pinched my face, pinched my chest, pulled my hair and hit me. It was awesome!! I honestly don't know if I should laugh or cry? She is one heck of a fighter, which is cool, but for cripes sake I might lose my freakin mind!!! Thankfully tomorrow is another day, which unfortunately is the test run for me and work. Shane's mom is coming to watch Jaili and Evie tomorrow for a few hours while I go and have lunch with Shane and basically stay away from the house for about 2 hours. So wish us luck.  My heart breaks for her for about the first hour of screaming (ok maybe first 45 min.) I know that she is in pain. then after it goes on for so long I just kind of go numb. I fight to stay connected to her during these times. We are getting there. It's a long road, it's what we expected. There are times when it's definitely worse than we were prepared for but I see the smalls strides that she has been making day by day and it's so worth it.
I was able to get a couple of pictures today with no sunglasses.

Goodnight
Don't let the pictures fool you that girl is one heck of an angry fighter : )

Finally pictures!!!

I have no idea how to lay these out so they look good on the page!! Seriously annoying but anyhow here's photo's finally. Technologically I'm not the sharpest knife in the drawer, brightest candle in the box, whatever the saying is. So hence why it took so long for me to manage to get these pictures of the camera and on the blog. I'll try and get pictures of Eves with no glasses on tomorrow so you can see her beautiful peepers. She has been doing out standing the past few days. Even comes to me to "check in" during play time. I've also been getting lots of hugs and kisses through out the day. She had to have blood drawn today and in the middle of her crying she looks up to me to give me a kiss and then goes on crying. Poor little sweet pea. She did awesome though. Since we have come home she has really blossomed. We've had a few setbacks, as to be expected, but overall I've been pleasantly surprised and amazed at how well she has been doing. She is such a great kid and such a blessing to our family. She adores her big sister, which is something big sister is still getting used to. I honestly can't believe the transformation we've had with her. She is a different kid than 3 weeks ago, her personality comes out more and more everyday. I do go back to work part time next week (2 days a week) so I'm really scared that we are going to have setbacks. We are praying for God's hand on everything. It will all work, I'm just stressing about it. If we do have setbacks at least I can modify my schedule to work around her (the joys of being self-employed) Anywho, enjoy the pictures.

Is ignorance inherent in some people or do you think it's taught??

OK Seriously, I realize my daughter has white hair and light blue eyes that move around alot. Does everyone have to point that out though. Shane and I are getting EXTREMELY irritated because everytime we go out in public we will have at least a few people completely go crazy over Evie's hair and eyes. I don't mean to turn bitchy but come on people. We had one lady in a restaurant yesterday want to take Evie through the kitchen so the rest of the staff could see her. Then at my husband's work (he works at a hospital) in the cafe we had 2 ladies make such a huge production over Evie's hair that it actually  attracted more people to come over and look. Evie is completely adorable so I get that but it almost seems like we are the walking freak show.It is absolutely ridiculous. It would be the same thing as someone coming up to a person who is very black and going "WOW, you are so black, hey everyone come over and look at this really black lady" You just don't do that crap. But for some reason people feel they can make all sorts of comments about how pale Evie is , how light her hair is. How blue violet her eyes are. Some people actually laugh and bring people over so they can see her. I'm about to go insane and go off on someone. It's also affecting Jaili. She told Shane and I that she felt invisible, that people don't see her anymore, that she doesn't feel beautiful and that people only see baby sister. Of course we had a HUGE conversation first about beauty and people's opinions. Then we talked alot about baby sister and how she will have to deal with this for the rest of her life.
So for all of you parents out there with children with albinism, how do you deal with it? What do you say to people? How do you not want to tell people off and then wack them?
Yes, my daughter's are unique and beautiful, both of them. I don't need everyone and their dog announcing it to the world though. I worry about the girls as they get older too. I need a come back to shut people down.
I was used to being stared at alittle with Jaili because she has purple bangs (as do I) but that staring was different. Positive. Our choice with her hair. All people would say was " HOW CUTE, purple streaks, just like mommy" With Evie it's not a choice and the comments and staring are out of curiosity, like a freak show. Evie is not a side show to be paraded around. She is a sweet, loving, spirited, bright, beautiful baby girl.
Yes, I'm new to this stuff, yes it's irritating the crap out of me and yes, I know I will get used to it eventually. But any advice to help us deal would be glorious. Anywho, had to vent.
Oh and I don't want to ignore the fact that she has albinism and is gorgeous. I just don't want to be the object of fascination for people...constantly! People need to remember to THINK before you act or say something.
The crazy thing is  is that I don't really see what all the fascination is about. I don't see that she looks much different than anyone else. Maybe except her beauty just like her big sister. (Yep, I'm a mother who adores my girls).
Oh and we are going to the beach this weekend so I WILL get pictures!!!!!

Evie is doing great!!!

Evie has been doing so well these past few days. We've had virtually no screaming temper tantrums and she has been such a kick in the pants to be around. We are definitely having some good times right now. I know it's most likely not permanent...yet. She still has sadness and crying that comes out right before bed time and anytime any other female comes over to the house (grandmas, friends, etc) she pushes me away very hard. You can tell that she wants to be close to me but she is just not completely ready yet. Shane went back to work yesterday and Evie did really well. We ordered a few books from Amazon to help us with attachment and bonding, and one in particular has made a HUGE difference. It's called Holding Time. The author developed this technique for holding and bonding for children with autism and found that it works on all kids. It has been so beneficial for Evie and I. It encourages eye contact and letting your child cry and yell to get out the sadness and anger that they are feeling. So everyday Evie and I (also Jaili and I)have holding time. The first time with Evie was more like a small wrestling match. She didn't want me to hold her much less have to make eye contact with me. It took about 1 hour and 15 min of having her scream and yell at me and then all of a sudden she stopped screaming looked me in the eyes patted the side of my face and said "momma". She continued just stroking the side of my cheek saying momma and then fell asleep. Since then each holding time session the crying has been less and less, today she in fact did not cry at all. She actually smiled stroked my cheek 3 times and said momma as soon as I held her like a baby.
She is stinkin adorable. I love that she is feeling comfortable enough to let her personality shine through. She is very sweet and loving and babbles like crazy. Now that she is beginning to feel comfortable she is actually quite an easy toddler, generally happy most of the time. Don't get me wrong it's not all bunnies and sunshine, she is still the loudest screamer I've ever heard but now I don't mind it so much. I'm really beginning to attach to her also. Which is so Awesome. Most days I just want to kiss her squishy little cheeks until I could eat her all up.
Jaili (mommy #2) amazes me everyday with her capacity to love and help. She has taken everything in stride. She is so well spoken that even if she is having a hard time she comes right out and tells us. She told me the other day that she was feeling very lonely because Daddy didn't carry her like he used to before baby sister. It's so nice to have a 4 year old able to verbalize her feelings so well. We had a good talk about everything after that and I just let her know that everyday we would have a time for her to talk about how she is feeling to get it all out.
We had Evie's eye appointment at Casey Eye Institute last Friday and the Dr.Reznick pretty much said everything we assumed.In a nutshell Evie's eyes are pretty crappy. She has nystagmus, strabismus of both eyes, small optic nerve, astigmatism, head tilt because of her null point and something else that I can't think of the correct name for. Everything is pretty common with OCA1 albinism. The Dr. is going to have Evie wear glasses for the next 4-6 weeks then reevaluate after that to see if glasses helps her crossed eyes, head tilt and slows her nystagmus. If the glasses don't help we are looking at doing surgery for her crossed eyes (strabismus) and dampening her nystagmus this year. Again none of this caught us by surprise. It's pretty much everything Shane and I were anticipating with her eyes. Although I didn't realize how dorky the glasses were for infants until we started looking for them. Seriously, I realize she is just a toddler but these glasses they have are REALLY bad. We are looking for the least dorky of the bunch. Yes, I realize Evie won't care nor will she even know that the glasses are bad. If I have the option of finding something a little cuter and less goofy I'm going to go with that option.
Anywho, I will absolutely try and get pictures up today of the little ladies. I know I keep saying it...it's just a pain in the bum for me to try to get them on her, but I will at least attempt it today.