Tuesday, June 15, 2010

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.

Wednesday, June 09, 2010

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

Tuesday, June 08, 2010

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.

Friday, June 04, 2010

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!!!!!

Wednesday, June 02, 2010

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.