N this one's for you

One of my dearest friends does a Favorite Fotos Friday and every Friday for the past 2 years I have thought of linking up, but since my posts are about every 10 months that never quite worked out - but I did it this week N!

This Friday's theme is Old and New.

Rett Syndrome is my old and new.

It's an Old monster in our house, introduced to us on September 3rd 2008. It has taken so much away from our little girl Cata but has introduced us to a new world that I never envisioned joining - the special needs world and the Rett Syndrome world. The hardships are hard, but the rewards are amazing.

I have grown tremendously in a way I probably would never have grown if it weren't for the Rett monster entering our lives. I have also met a whole community of amazing individuals who I probably would never have crossed paths with if it weren't for Rett. So for this Old, I am sad for Cata and the limitations it puts on her, but I am happy for how it has had such a positive influence on the lives of all in my family.

And there are a couple New. The most exciting today was when Kevin said "good morning Cata" and she verbally responded "morning" clear as day. See, not such a big deal for a 5 year old to say "morning". But for a 5 year old who is nonverbal, who has apraxia that blocks the signals from her brain to her muscles to be able to form the sounds and say words it's TREMENDOUS! She was so happy to hear her own words come out.

This little girl is amazing - she is smart, Rett Syndrome does not cause mental retardation or cognitive disability as was once thought - it just blocks all ways for these girls and women to communicate so they can't tell you what they know, that they have learned to read without being formally taught, that they understand everything that is said to them or about them. Thanks to technology, we are able to get a glimpse of what is in those minds, give some opportunities for communication, be creative in how to teach and how to extract what they have learned.

My 2nd New with Rett syndrome is the new and exciting research that is going on! Labs around the world are doing research on Rett Syndrome - so many of these researchers think this could be genetic disorder that can be cured! This research couldn't happen without the hard work of so many who fundraise for money. Rett is too small of a disorder (according to NIH even though there are as many individuals with Rett as with some other well known disorders like Cystic Fibrosis, Huntington's and ALS) to get NIH funding, so instead it all comes from private donations. The Rett Syndrome Research Trust, was able to raise and fund $3.6 million in research this year alone!

We were blessed to have amazing friends who held a fundraiser in honor of Cata this past summer. Kevin's friends from high school, Leigh, Mitch, Dave, Sybil, Deb (and significant others), approached Kevin about doing a fundraiser in their home town.

They did all the work, they found the venue, organized the event, advertised it, hosted it. It was AMAZING. The outpouring of support was such a special gift.

The fundraiser raised money which contributed to the $3.6 million of funding that has gone to researchers, but the emotional support that we felt was something money can't buy. This event was such a special event, one that reminds you of how good things come from hard times. The entire community rallied and came to support Cata and our family. We could never thank all those involved enough for such a special day.

My dream is that in 2012 my Old can be Rett Syndrome and my new can be a CURE for Rett Syndrome.

Well, after a 10 month hiatus I'm back. Life got out of control. It's not really any better but I have a moment to breathe and reflect on the past year. Today we had possibly our first day of realizing that things with the kids will get easier. Franci has been a blessing in our lives but certainly added an extra element of chaos that took us the last 16 months to settle into.
Franci has grown tremendously. She has an intense amount of attitude in that little body of hers. She knows what she wants and won't budge. If you give her something she doesn't want to eat, and you have been lucky enough to get it in her mouth, she will spit it back out. If you want her to do something, go somewhere, put something on...and she disagrees, drama queen will drop to the ground, knock her head on the floor and cry hysterically. It's kinda cute except for the permanent bruise she has on herforehead. Despite all this attitude, she is a sweetie.

She gives the best cuddles, has become a ham in front of the camera, overall goes with the flow and is fairly easy (feel free to remind me I have said this on those not so easy moments :).

Tomas is emerging out of the terrible 2s...1 month shy of his 3rd birthday and my little man is showing glimpses of being on the other side of this.

He is also super sweet, LOVES to cuddle, has been a 100% mommies boy for the last 2 years but now is selective about who he wants - depending on who is not available of course or who didn't say no the last time. He has his moments with Franci - from sweet older brother, cuddling, kissing, caring for to grabbing toys, nudging a little too strong...

We are getting there though - the sweet moments are becoming more frequent and the jealous middle child is becoming less frequent. He loves his school, loves telling us stories. He has lots of "pretend friends" that are quite active in his bedroom - some exercise, some bite his hand, some clean up the shelves and others pull things off his shelves.

He can be independent or fully dependent for things he has been doing for months. He is quite verbal - tells very elaborate stories, updates me on the day, can tell me how his siblings did. He hears EVERYTHING even when he looks like he isn't paying attention and repeats it later (note to self - watch what you say!). He can switch between Spanish and English depending on who he speaks with.

He is at war with the potty and refuses to potty train. He knows who is in his class is potty trained, knows exactly what the potty is for, knows when he needs to use the potty but refuses. Not a battle I have time to fight so on we go with diapers for my almost 3 year old....He has learned how to ask Cata things by watching how we communicate with her and is learning how to wait for a response. He understands peripherally what Rett Syndrome has taken from Cata and he asks for those to be "fixed" so she can do things - but in the mean time he says he'll help her do things.

I'll miss this phase but I'm sure each phase in life will be fun and rewarding in it's own way - this is just such a sweet cuddly time.

Cata. My angel. I cannot believe she is 5. I'm hopeful that 5 is a good year.

Life with Rett Syndrome suck but she is so amazing. Not many 5 year olds could go through daily life that she has to go through and do so with as few tantrums or melt downs. Life is hard. She still doesn't sleep and I fully recognized she won't unless I drug her - just not ready to do that. Sleep would be so good for her, but is drugged sleep equivalent to real sleep? I dunno. At some point getting up at 3am every day is going to get old - for her and for me :) So after being in her bed from 3am-6:30am it's time to get her up, lay her down on the floor, change her diaper, get her dressed. While she could be potty trained (or really more like time trained), she cannot independently get to the bathroom, take of pants, sit down and unless she is infront of her communication device she cannot tell us she needs us to take her to the bathroom. So reality of changing her diapers for the next 50+ years has set in, and that's okay. Then she gets fed - ideally with her input, reality with 3 screaming kids usually (sadly) whatever we get on the table for her. But she happily eats it like a trooper.

One of the hardest parts we have found is that she requires 1:1 assistance for everything - this includes playing and her siblings have not been old enough to be good playmates and we are a man down with 3 kids for 2 parents so it's hard to spend the needed time to play with/for her - that means letting her pick what she wants to do, but then putting myself in the mindset of a 5 year old and playing for her - coming up with the dialogue, the actions, etc. Harder to do than one might think :)

We have many blessings - she still walks so at least she can walk up to and look at things she wants, she is patient, she goes with the flow. It's hard to see her get frustrated and know that it's something she wants that I just don't know what she is thinking and she can't get it across to me with her communication device - there is nothing worse than that. Or daily (weekdays) when she has a crying fit around 5pm after getting off the bus and being home for about 20 minutes. It breaks my heart - maybe she is over stimulated, maybe she is starving, maybe she wants to talk about her day, maybe she wants her pressure vest back on...the list could go on but we don't know, so the tears flow each weekday evening.
There is hope that Catalina will live a day without the restrictive cruelties of Rett Syndrome, able to use her voice to speak, her hands to do what she wants, her legs to take her where she wants, able to live a more typical life (with all the atypical things that happen in typical life). Imagine, she understands her world like all other 5 year olds but is in a body that has failed her.

Each time I hear about the research going on I get hope that it will happen in her youth. What a dream, that she'll get to live some of her life free from the cruelty of Rett Syndrome. We are eternally grateful to those who dedicate so much of their lives to raise awareness and fundraising for the research to find a cure for this monster so no other child has to suffer like Catalina and thousands of other girls suffer. Don't get me wrong, she's a blessing, has taught me more than I could have ever learned in a life time, I love her to pieces, but I want her to be free, to live life with some control over it. This post is long enough so I won't add more, but there is some really exciting research that is being funded that could mean a cure, soonish (in scientific timelines). Read this exciting news as a glimpse of some of the amazing people dedicating their lives to free so many girls and women who suffer daily from Rett Syndrome.

And just to finish up with some bloopers. Here are the reasons why we failed to get a Christmas card out this year:

We had a great Christmas and we are looking forward to 2012 and all the excitement that may bring us! Hopefully it won't be another 10 months before I post again.

Tomas is 2!

Well this post is only about 6 weeks late, but better late than never! Tomas turned 2. I cannot believe it. He is growing so fast! He is such a good little kiddo, most of the time.

Things that he is up to.

He runs, jumps, climbs on just about anything. He zips up and down the steps like a pro, but still likes to ask for your hand (except for the time I found him with his cousin on the 3rd floor of the house). He is loving the balance bike he got for his birthday.

He is quite a talker and has become a parrot. He repeats EVERYTHING he hears, he is such a little sponge. He will repeat lines he hears in a song, he will repeat phrases he overhears from someone talking near by, he repeats anything Kevin and I say to each other within earshot of Tomas. And he is starting to create his own stories. My favorite one is when we were on vacation recently, he saw a dog when he was riding in an elevator with Kevin. That night as I was putting Tomas down, he told me "daddy touch doggy wet nose, yuck, elevator". What? I asked Kevin and there was a dog, but they didn't touch the dog. How does this boy know dog's noses are wet? Cutie. He has repeated this story over and over again, in fact tonight when he told me about some friends pants who got wet today, he then proceeded to tell me about the wet dog nose that daddy touched. So he speaks in short phrases or in sentences, he speaks spanglish, mixing the 2 in any given sentence. He can count to 10, sometimes it comes out "2,3,5,6" and other times he makes it 1-10 correctly. He is starting to sing A,B,Cs.

He loves art projects, loves to paint, loves to draw, loves his trains. He will push his trains around for long periods of time. Tio Tito gave him a train that has blocks which he happily tells people that Tio Tito gave him this train. He will make block towers to knock down.

He is not afraid of pink - the beauty of being sandwiched between 2 sisters. In fact, he insists on wearing all of Cata's hair bows, he happily wears Cata's old pink hat, her pink boots, her pink gloves (maybe we have too much pink?). When one of us says "should we read Angelina Ballerina?" He will squeal "yes! Angelina!". Or if we pull out Fancy Nancy, Tomas will squeal "Fancy Nancy"!

But then he will use the dolls to hammer stuff, jump on Cata's dolls, throw things when he thinks we aren't looking...He loves Tomas the Train stories, Dr Seuss, Elmo. He is also a master of technology. He drives the ipad like it's a board book - he flips through apps, selects them, plays them, turns them off. He takes my iphone, can turn it on, find the photos, flip through photos. Just this weekend he saw the cable for my iphone, plugged the correct end into my phone and the other end into the USB slot of my laptop. I don't know where he learns this stuff!

He also decided to become a photographer this weekend as he learned how to turn on our camera, zoom in/out, take a photo. Amazing what kids these days do.

Tomas is overall a really well behaved kiddo. He LOVES his 2 sisters. He looks out for Catalina and he just loves on Francisca. He wakes up in the morning and says "baby, baby?". Once he knows where she is, he then says "Cata, Cata". Once he gets out of his bed, he runs right to Cata's room to say good morning to her. If she is sitting in a chair, he comes up next to her and either lays his head on her lap or takes her hand and says "hi Catita". If we are out walking, he takes her hand to walk with her.

(not the best photo but cute moment)

His love of Franci is pretty cute too. He is getting much better at laying next to her rather than on her, but he still has his moments where he just can't resist laying on her.

What else about this little kiddo. He is quite the household helper. He loves to throw trash away when asked, will clean up his toys (when asked), he goes to bed easily, eats well, naps well...He loves being dad's little helper - unpacking a box, setting up a photo shoot, carrying stuff in from the car.

Testing out the car (It was off!)

The closest thing to a dog he'll ever have

Helping to shovel

Tired from shoveling!

Trying on Tio Tito's hat!

working hard with Tata

Since the only picture of Cata wasn't so cute, here's one to make up for it!