9 Months

Big T is 9 months old! Times really flies. Both kids are doing great now that we have all recovered from the flu. Cata is still loving being the best big sister. She is just so sweet with Tomas. Every day when we feed him breakfast (which is after she has eaten breakfast), she just stands next to him and watches and smiles. Tonight I was giving Tomas milk and she kept walking over to him and planting big kisses on his head. It's adorable to watch.

Well, what is Tomas up to these days:

- He is a chatter box. He has M's, B's, P's, A's, O's. He is constantly jabbering away

- He loves to wave (see video on previous post). He will always do it on command, but he likes to also just break out a wave at random. Usually the wave is pointed towards himself and he watches his fingers. Tonight at dinner he waved between each bite - adorable.

- He has mastered getting finger foods in his mouth with consistency and is darn proud of himself for figuring this out

- He still rocks but no crawls. He gets around either with a modified army crawl, a roll, or his newest thing is to rock, flatten out onto the floor, then sit back up. He repeats this over and over and over again until he gets somewhere.

- He loves to stand. When you go to put him on the floor he puts up a pretty good fight by locking his knees and just tries to keep standing

- He is still a good sleeper, sleeping 12-12.5 hours at night and takes 2 naps, although I have noticed the morning nap has shortened to an hour. He still usually gets a 2 hour nap in the afternoon

- He is also a great eater. He usually protests when meals are done - and these are not small meals. In fact, if I chose to eat pureed foods, the amount he eats would probably fill me up.

Well, I'm sure there are lots of other cute things he is up to, but having just worked an incredibly busy 30 hours shift, my brain is only 1/2 working. Gotta love Saturday call at the hospital...

Cata is also doing great. I'll have to save it for another post, but I went to a conference on Assistive Technology and heard lots of great talks by Linda Burkhart. We then had the chance to have her work with Cata and it was awesome! Cata is using her PODD (I'll explain in the next post), and just LOVES "talking" with it. It's low-tech and doesn't allow for independent access, but as she learns it will at least allow for autonomous communication - meaning her thoughts rather than just the choices I present.

Ok, here are some pics of the kiddos:

Doesn't he look like a turtle in the picture? L&T, the Mountain Sprouts onepiece is ADORABOLE!

He doesn't trust her... :) Oh, and she has to wear a patch 3 hrs a day x 8 weeks to fix some weakening of the muscles on 1 of her eyes - trying to avoid surgery.

What silly birds.....These are 2 cute kids.

Always with a smile.

In action...

Wish this wasn't blurry because it's a great smile she has!

We had a visit from Ingrid, who is working hard to raise money for research so we can find a cure for Rett! Check out her site Girl Power 2 Cure. The idea is she inspires girls to help raise money towards finding a cure for our girls with Rett Syndrome.

He has this toy box with all sorts of little things to play with. It's cute because it's his, so Cata doesn't play with those toys, as opposed to the other toys they share. He loves looking into the box and deciding what to get out.

Posing for the camera...

A week of firsts

Tomas had a big week last week.

He waved for the first time:

He finger fed himself (although didn't get it on video - this is just an attempt):

He is rocking:

He and Catalina were playing together:

And Tomas and Cata had a visit from Ashlyn:

I guess one last first for Tomas was that it's his first October to be able to be involved in Rett Syndrome Awareness Month with us. So Tomas is asking you to look at RSRT to learn more about Rett so you can continue on this journey with us.

Baptism weekend

We have had a busy September. Before our trip to Ireland, we invited friends and family to come celebrate Tomas’ baptism over Labor Day weekend. It was a crazy and fun-filled weekend. Our friends Laurie & Travis arrived on Thursday with their 3 kiddos after a long 2 day drive from Colorado. Laurie and Travis are Tomas’ Godparents and are now officially part of our family. We had so much fun with them and watching all the kids together. We cancelled Cata’s therapies on Friday so she could enjoy the guests! Friday we met the crew at the Children’s Museum for a fun-filled and exhausting morning.

Cata just about made it to the car and then as soon as she was strapped in, this is what I saw:

My parents flew in late Thursday night and after my dad gave a lecture Friday morning, they joined us for an afternoon of craziness. My sister also arrived Friday with her daughter, Sophia. Laurie, Travis & company came over as did our friends N&DH with their 3 kiddos. Friday night dinner consisted of 9 adults and 9 children aged 3 and under. It was a blast! Cata loved having all the kids around – she doesn’t get to see much of other kids as she has so much therapy. The one hard part was watching how she was not able to interact with the other kids in play like she would have liked to. But she still enjoyed herself and I loved watching some of the group moments:

Saturday morning started off with a visit to the State Fair. 8am sharp(-ish) the same crew met up at the Fairgrounds for a morning of exploration. Just about anything you want fried and on a stick was available, in addition to the animals to pet, the 12 piglets being born while we were in the barn (we saw the last one!), giant slide on a rug, merry-go-round…the fun goes on and on at the State Fair.

The funnies thing about this pictures is that Laurie was a vegetarian when we met :) Haha - now this is her littlest munchkin enjoying Laurie's leftovers.

And...beer on a stick - clever, no?

And of course this fun-filled morning again tired Catalina out:

Saturday afternoon was more mellow, just the family. My other sister arrived as well as my in-laws and we all did a quiet dinner at our house. We missed my brother being with us, but he called in to say hello. Sarah & Dave arrived with their 2 kiddos to join in the fun.

The grandma's enjoying Tomas

Grandpa taking his turn.

Cata excited to see her godmother and dear Auntie Alicia

Is that an attempt at a crawl? The excitement got him going!

How sweet - what a little cuddle bug she is.

Finally, the baptism was on Sunday. It was a nice, simple ceremony. Laurie & Travis joined us in welcoming Tomas into the church. Tomas kept a very close eye on the priest as water was poured over his head, but no screams or cries! At least none from Tomas – the other kids that were being asked to sit patiently in a church…not so much :)

(sorry for the dark pictures - I had no time to process)

Can't see T but he is there...

The family!

The special boy.

After the ceremony we headed back to our house again for a lunch. We were fortunate to have beautiful weather so we could be outside. The craziness with the kids continued:

Finnley chasing her date, Bryson, around - they were really cute together!

she LOVES her swing - and abuelo too

The Jackman

Well after dark and after the kid’s bedtime, the party came to a close. It was one of the best days we have had in quite some time. It reminded us of our “Caca Cruisaders” days (long story, 4 couples from med school and we all have kids the same age). We missed the 4^th Cruisaders this weekend, Mel & Brad, but we are excited to see them in a few weeks!

Until next time...

Anniversary

About 1 year ago we got Cata’s diagnosis of Rett Syndrome. We were in shock. We sent a letter out to all of our friends and our family telling them of this horrible syndrome that Cata is living with. This beautiful, intelligent, sweet little girl is locked inside her body with no voice and limited physical abilities. We were instantly surrounded by love and support, both emotional and financial, from a large network of people who have been in our lives throughout the years. The financial support came in the form of donations to Rett Syndrome Research Trust (RSRT) in honor of Catalina. Through that support almost $30,000 has been donated in her name. That is $30,000 closer to a cure!

At around this time we were contacted by Monica Coenraads, the Executive Director of RSRT. She informed us about a “Family Challenge” that RSRT was sponsoring. The family that raised the most money towards research would enjoy a trip to Ireland. We were fortunate to be the lucky winners of this trip. More importantly, the money donated in Cata’s honor paid for over 150 drugs to be tested for Rett Syndrome (see this site for more information). On the anniversary of her diagnosis, Kevin and I just had the most lovely trip to Ireland, staying in a beautiful B&B, the Ashley Park House. It is a gem in the gorgeous countryside. It was a much needed break, and it afforded us the opportunity to reflect on how much work is left to do to find a cure.

There is still no cure for Rett Syndrome, but many researchers are working diligently to find one. We dream of a day that Catalina can talk to us, can feed and dress herself, can play with other children her age. We dream of a day that she does not have 30 hours of therapy a week but rather can enjoy the day however she’d like. We have many dreams for Catalina and we hope to see them come true. Kevin and I are so thankful to have so many wonderful friends and family members who have given us the love and support we have needed to live with Rett Syndrome. In addition to this network, we have found an amazing support network in other Rett families. I am amazed by the dedication Monica (and many others like Ingrid Harding!) has towards the goal of a cure – from this dedication RSRT was born. The website, www.rsrt.org, has the latest information on where the research is and where it has the potential to go if the funds are raised. I was recently struck by a simple fact that someone told me in passing – the Lance Armstrong Foundation was able to raise $62 million through the sale of the yellow rubber bracelets – 62 million dollars! That is just through the bracelet sales. If the researchers working on finding a cure for Catalina and the 4000+ other girls who have Rett had even a fraction of that proceed, I might be writing about a different future for Catalina. So put on your fundraising thinking caps – lets find a way to raise money for Rett Syndrome research and get closer to the possibility of a cure for Catalina! Not only would this help girls with Rett Syndrome, but given the research that has already been done, a cure for Rett Syndrome has the potential to unlock the mystery of other neurologic conditions like Alzheimer’s, Parkinsons, Fragile X and others. In the meantime, while we are being creative in ways to raise our $62 million dollars, an easy way to donate towards more research is by clicking here. Thanks for all of your continued support!