18 months old!

I can't believe my little guy is growing up. He's now 18 months old and changing faster than I can keep up with. He is my lovable, cuddly little guy but he's starting to explore his independence more.

He is quite the adventurer. He is getting into everything, loves exploring the cabinets and drawers. He loves opening doors and then saying "bye bye" as he closes the door. He loves the water, going down the slide (and now walking up the slide), walk up and down the stairs by himself (don't try to help him - he wants to do it on his own!), climb on furniture, ride on anything that will move. His motor development is extra fun to watch since it was so hard to see Cata not progressing at this age - normal development is just a huge blessing! We cherish it, even when it gets him in trouble :)

He loves his Tata and has started to get to know his cousin Sophia. He loves giving out hugs to those around him. His hugs are so enthusiastic when they are directed at Cata they usually end with both of them on the floor crying as he knocks her down to the ground. She's learning to brace herself a little better and he's a little more gentle with his hugs these days. He is caring, often taking Cata's hand to lead her places - upstairs, to the door, to bed. If she is put to bed before he is, he stands by her bed, reaches in and pats her head or chest, then makes sure we turn on her noise maker and waves good bye as he leaves the room. He always brings her (and us) our shoes when we are getting ready to go out. He will sit down when you tell him it's time for a diaper change, clothes change, time to get shoes on or off. He will bring you anything you ask him to and put items away when asked (wow! hope this lasts a long time!).

He is imitating everything, even the things we don't think he notices like turning on Cata's noise maker, putting the keys back in the drawer...

He tolerates me putting in him in less than masculine outfits including pink shirts when I only have Cata's clothes for him :)

He is an awesome sleeper - but also likes to play in bed. He sleeps 12-14 hrs at night, naps 2-3 hrs.

He loves the outdoors and is pretty tolerant of Cata leaning on his during bike rides :)

He is talking more each day. Picking up about a word a day. Some of my favorites are "thank you" and "i love you", but there is bye bye, ball, up, out, door, ice, bounce, ssshhhhhh, eat, fruit, dada, mama, cata, tata...the list goes on and on. it's so cute to hear him learn words so quickly as we speak. Again, something that Cata had so early on and lost by 13 months, so it's a blessing to hear. He is very proud of his language!

The most amazing tings is my little baby is growing up and won't be the baby anymore. He is getting ready to be a big brother, practicing his skills of taking care of baby.

And lastly, a picture of my princess who is excited to be a big sister again!

Physical Therapy and more

Rett Syndrome presents many challenges for Cata but one of the most interesting challenges to me has been finding good physical therapy (PT) for her. Because she is ambulatory and gets around fairly well, she seems to not "need" physical therapy. The challenge is that she gets around fairly well if she does not lose her balance, if her brother does not run up and give her a hug knocking her down, if another kid doesn't whiz by throwing her off balance, if she does not need to sit down on a chair or the floor, if she does not need to stand up from a chair or the floor, if she does not need to go up or down stairs, if she does not need to walk on slippery surfaces such as pool decks...the list could go on. So yes, she can walk from point A to point B without falling as long as nothing is in the way to challenge her balance. We are so thankful that she does have the mobility that she has, but also want to help her so she doesn't fall as often. She is getting increasingly frustrated with falls so it'll be hard once she is in school in the fall and gets knocked down constantly or trips on toys left on the floor.

So in comes a new physical therapy, something called Cuevas Medek Exercises or CME. The whole philosophy is to improve stability and balance. It has really worked wonders for some individuals who were not walking and with intensive CME are now able to walk. So our hope is that with this therapy our already ambulatory Cata gains the stability to have better balance. The therapist (who is awesome!) doesn't see Cata as someone who doesn't need PT, she sees her strengths but sees her major physical weaknesses and has thoughts on how to challenge them. She works to wire connections to Cata's brain so that motor patterns develop in a new way. Maybe she will be able to stand up from the floor when she feels like it, or maybe even take steps downstairs? Who knows. We are excited. Here are some videos of her working hard (and not always loving it).

In other news, Tomas just keeps growing up! In the last week his vocab went from mama, papa, and ball to adding hi, bye, up, out, hat, boom, uh oh. I don't have any videos of him or really any new pics, but I'll post more soon :)

And back to Rett Syndrome, the research that is being done is amazing. More labs around the world are taking an interest in MECP2, the protein that is not encoded properly in Rett Syndrome. As with all things though, funding the research is always a challenge. There are 2 competitions that could win money for Rett Syndrome, so if you have the time, we'd appreciate you voting and spreading the word! They are:

1) http://www.refresheverything.com/rettresearchtoreality. Pepsi will donate $250,000 to the #1 and #2 projects. International Rett Syndrome Foundation is currently ranked #8. You can vote for this every day until June 30th (although I believe that those who land #3-10 get to run again for hte month of July). When you go to the site, you have to register. Each time you will need to log in and then you have to hit "vote for this idea" a second time since the first one only allows you to login, doesn't count your vote.

2) Through facebook you can vote at http://apps.facebook.com/chasecommunitygiving/charities/208011668-girl-power-2-cure-inc

Chase is giving $250,ooo to the charity with the most votes by July 12th, $100,000 to the next 4 charities, and $20,000 to the next 195 charities. Girl Power 2 Cure is a nonprofit that raises awareness about rett and also raises money for Rett Syndrome Research Trust

Thanks for your continued support. I dream about the day that Catalina can use her voice to thank you personally.

Special Day

Today was one special day for my little Catalina. She has been in the best mood ALL week as her special day approached.

We had some friends come celebrate with us:

And Abuela:

We got excited:

We slowly walked in the room to get our big present:

And there it was - on the table:

Cata is one EXCITED lady to tell us what's on her mind!

We celebrated with cupcakes:

Wow, was this an awesome day. Huge thanks to all those who helped make today possible! Cata, Kevin, and I are so grateful to be able to have this device so Cata can communicate independently with us.

It's summer!

So much for being better about posting. For Alicia's birthday, I'm posting some pictures of her niece and nephew :) Here is a summary of our last 6 months. The kids are doing great. They are loving the summer weather.

Catalina is doing well. She has been having really good days. We are seeing more improvements in her gross motor skills and occasionally a good fine motor day. She has been happy, playful, and healthy. We are looking for preschools for the fall - should be a fun change for her. She has been using her eyegaze device at therapy for several months now and is navigating quite well. I have 2 stories from 2 weeks ago. She fell in school and cut her chin. The next day she had speech therapy and while we were getting her in her chair, we were telling her speech therapist about the fall. Little did we know, Cata was looking at her eyegaze device, navigating the pages, she found "feelings" then "hurt" then "face" then "school"! How amazing is that! She was dying to tell the story herself. Then the next day in therapy she was tired and not excited to be there. The first thing she picked on her device was "home" and she kept repeating it. She struggled through therapy and then when leaving, the therapist selected "goodbye" and Cata selected "yes" "please" "home". She knows what she wants - I can't wait for her to be able to talk more with us - more to come on this later...

Tomas is constantly changing. I can't believe how quickly he changes. His vocab has been at a standstill for a few months with mama, dada, ball, book, and more. Last night at dinner he surprised us with "thank you"! It was precious. He is running everywhere, has learned how to climb up on high things, insists on walking up the stairs holding the railing all by himself, walks up the slide and has attempted running down the slide a few times (interrupted by the nearest adult of course), kicks a ball around the yard, has discovered the fun there is to have in kitchen drawers and cabinets, loves stopping his activity for a hug and a kiss. He is definitely a cuddle bug. He has learned how to give Cata hugs without knocking her down and now holds her hands to dance with her. I hope all this cuteness doesn't disappear with the introduction of the new baby in a few months....

Ok, and now for the picture overload:

T before his 1st birthday

Patiently waiting for birthday cake

I got it!

Like the static?

Winter days....finally gone!!

Bedtime stories...

1st carousel ride.

Riding a real horse!

Dancing!

Silly monkey doing a headstand on the tile