Snow Belted: December 2010

It's amazing to think that 4 months have already flown by. Francisca has changed so much in such little time. It seems like it was just yesterday that we were at the hospital ready for her birth

and here we are, 4 months later, living in a different state, both with new jobs, and a beautiful girl that changes by the day

Francisca is an easy baby (so far - no promises for the future!). She cries when she wants to be fed but is otherwise smiling. Talk to her and you are sure to get a nice big gummy smile. She loves loves loves to be held, does okay in a bouncy seat, but is not a fan of tummy time (hence the nice bald spot on the back of her head). She coos to herself or in response to your coos. She recently learned that blowing rasberries is a ton of fun but it leaves her shirt quite wet. She has more control over her hands and uses them to bat at things, feel things, grab things in reach. She shows no signs of interest of rolling although she is mastering scooting out of seats if not buckled in. She can sit in the bumbo fairly well but her poor little head begins to weigh her down after some time. She's a pretty good sleeper which can mean sleeping from 7pm to 3am or on a lucky night from midnight to 7 or 8am. She has followed the lead of the older 2 and has rolls upon rolls to spare. I was told she weighed 13lbs at her 4 month visit, putting her at 60th percentile (but on my check of the growth chart 13lbs is 25th percentile for a 4 month old and she is clearly not a 25th percentile child for weight - do those cheeks look 25th percentile?).

I think that's it for the 4 month check in. Tomas continues to be obsessed with her, kissing her on every occasion he can and cuddling with her. He wakes up in the morning and says "baby, baby".

Catalina loves it when we bring Franci over to her, giving her huge smiles and nice wet kisses on the head. Her favorite seems to be when we lay Franci next to her before bedtime.

Today is Catalina's 4th birthday! I cannot believe 4 years have passed already. It has been 4 years full of fun, love, worry, fear, disappointment, learning a new normal, and happiness.

Catalina has been a trooper through it all - she is the strongest little girl I know. I can't imagine being as patient and loving if I had to put up with all that she has to put up with.

Today we celebrated her birthday with family and she was all smiles despite having been awake from 11:30pm-5:30am.

This year has been good overall with only minor bumps along the way. We have been blessed with good health for another year. Cata celebrated her 3rd birthday last year with her dear friends J, C, and A as we were far from family. She had a good year both in school and therapy and with her friends. The big milestone was getting the Tobii in June. This has been tremendous - allowing her to have some control of her day even if she doesn't use it for total communication yet. She got to travel to Toronto to see a new physical therapist. She and Tomas continued to grow the special bond they have. He cares for her, looks out for her, helps her use her switch, takes her hand to bring her places. And she loves him, gives him kisses, smiles at him.

We introduced Cata to her new sister in August and then 2 weeks later we moved 1/2 way across the country. Everything she knew was changed. It was a rough transition but she is coming back to herself.

At 4 years old Catalina continues to be a happy camper. She has a smile that just melts your heart. She loves those that care for her and she shows it with smiles and kisses. She loves dolls, loves the pool, loves to be read to, loves to DJ with her Tobii, loves to be heard by using her Tobii or her switch, loves her siblings, adores her Tata. Fancy Nancy is a current favorite as are princesses. She still loves music.

She continues to walk independently but needs assistance to stand up from the floor or to sit. Stairs are still a challenge but she works hard to try. She can use her hand to hit a switch although accuracy is inconsistent. She can finger feed with a rake grasp most of the time as long as the food is big enough and sometimes needs to be held up for her. She communicates with symbols either held up for her or on her Tobii, but she also has her nonverbal communication which can't be missed. She will let you know she is happy with her big smile, happy feet, sometimes a "yeah". And she will let you know she is sad, mad, or frustrated with "mmmm", screeching, crying. If you pay attention to her, you can find what she wants. One of my favorite examples recently was during snack. I was giving her a cookie that is gluten-free, casein-free. Tomas came up and asked for some so I gave him a bite. She started to rock, say "mmmm", and look really frustrated. I told her to settle her body as I continued to try to give her the snack and continued to give Tomas bites. Then it dawned on me - she got frustrated when I started giving some to Tomas! So I said to her "Cata, are you telling me you don't want Tomas to eat your cookie?". She looked up with a big smile and that was the end of her being frustrated.

She goes to school 5 mornings a week and has therapy 4 afternoons a week. She works hard. Childhood isn't all play for her, but she is a trooper!

Cata has been a blessing in our life. We are thankful for another year we have had with her and another year her health has been good. We have learned the hard way to appreciate the little things in life. She has taught us about patience as she has more patience that anyone in I know in the world and we owe it to her to have more than our fair share with her.

We get excited about the research that is going on in labs across the world, looking for a cure for Rett Syndrome because as much as we adore her the way she is, it would be a dream if she could enjoy life without having to work so hard every minute of everyday. This month marks the first ever clinical trial in Rett Syndrome - a medication already FDA approved that could ameliorate some of the challenges Catalina and thousands of others who have Rett Syndrome deal with each day. A cure for Rett Syndrome would be the best birthday gift Catalina could ever have. If you want to contribute towards this gift, consider making a donation to Rett Syndrome Research Trust by following this link. They are an amazing research organization dedicated to finding a cure for Rett Syndrome. They have funded some amazing research already and will continue to do so.

Well, here are pictures of her family birthday celebration: