4 Months

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

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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.

December 5, 2010

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:

A doll! Man was she excited. She kept loving on her. Adorable.

Abuela and Tata

Grandma and Grandpa

And some shots of the other 2 cuties:

Life happens

August was a crazy month. Somehow we thought it would be a good idea to have a baby and move half way across the country in a 2 week time frame :) But we survived. More importantly, the kids survived and have adjusted! We have the most amazing nanny who agreed to come with us during the transition before she goes back home - we could not have done this without her.

So for me, this has meant little time for things like pictures! I cannot believe that Francisca is going to be 6 weeks old tomorrow and we have NO pictures from weeks 1-5. Oops! Ahh, the difference between the 1st and 3r child for me are worlds apart.

This move has been great for me - to move back home where I have my roots and my family is priceless. My parents have been amazing, more amazing than I could have imagined. They have leant a helping hand (or 2 or 3 or 4) at all times and especially when we need the break. They have been fantastic with the kids, but especially with Cata.

What hasn't been great for me is the challenge of setting things up for Cata again. It took the better part of the last 2 years to get all of Cata's therapies set up. I spent 10 months (and plenty of $$) getting an IEP I was happy with that gave Catalina the best placement option for preK - with typically developing peers. We found a nanny who is amazing with her. We had some help from the county. Now to a new state means back to square one.

The easy part was finding the therapists - as long as I don't worry about the fact that they don't take insurance - yes, none of them take insurance. So why have pricey health insurance? Finding a pediatrician has been my next challenge. They don't take insurance either! What? A pediatrician who doesn't take insurance? I found they either a) take insurance but they are not taking new patients or 2) don't take insurance. Lovely. Again, glad I have good health insurance.

What has been the most disappointing however is the school system - advertised to be a top public school system, now I see is another party more interested in their budget than those they are meant to serve. Never having met Catalina, then reviewed her detailed IEP from our prior state and then decided to place her into a classroom that is not appropriate for Catalina despite the previous IEP that states her placement should be different and despite my insistance. So instead, for my "free and public education" I will rack up thousands of dollars in legal fees to get the county to do what they should be doing anyway - making a recommendation based on the child (IEP does stand for INDIVIDUALIZED education plan) rather than based on political reasons. The most infuriating part is that they initially recommended a program that would probably be a great fit for Cata but then the powers that be told them to take back their recommendation and give the cookie cutter option instead (which this cookie doesn't fit into btw). So the school has deprived Cata of yet another month of school (and the lawyer said it would probably be 3 months before this is resolved), allowing for more of a developmental gap to grow between her and her typical peers with missed social opportunities. So thank you public school system for looking out for your wallet rather than the children in your community that need you the most - those children whose multiple disabilities make private school virtually impossible, those children who are smart, eager to learn, but trapped in a physical body that won't work, won't let them explore their environment, won't let them learn by trial and error. Thank you for "serving" your community.

On a brighter note, here are some pictures from a beautiful weekend!

Sweet little Francisca, almost 6 weeks old and already 8lbs 12 oz (from 6lbs 6oz)

No I won't stay for a picture mom!

I love being outside!

These sweet little hands won't work right, but the mind inside does.

Sprinkler fun.

How cute am I?

Love these kiddos. Tomas is blowing a kiss to the camera.

3rd time's a charm

When I showed up at the OBs office back in January she almost fell out of her chair. She basically said something along the lines of "weren't you just here?" referring to my post partum check not quite a year prior. Then she said "well third times a charm so this one will be smoother". See, my first 2 deliveries were not so smooth - My first delivery I had an urgent c-section because of my fever of 102 affecting the baby. 2 days later I had sepsis with a very aggressive bacteria that kept me in the hospital for 2 weeks. Then 2 years later we delivered #2. It was supposed to be a nice, relaxed delivery until my uterus ruptured while I was still at home. So 10 months later when I became pregnant again, my OB was nervous. Kevin said I had already used up 2 of my 9 lives so this one had to be smoother.

Well, there were several hiccups during the pregnancy requiring the baby to be monitored every other week throughout the pregnany, but in the end, it was a nice, calm, uneventful delivery. So at 12:25 on Tuesday August 10th, Francisca Corinne Coloton entered this world at 36.5 weeks weighing 6lbs and 6oz, 18.5 inches long.

The second we heard her cry, we were relieved. The night before our c-section we had to decide if we should proceed with the c-section or delay it by a week. The amnio showed that lung maturity was borderline. The risk of delivery was breathing problems possibly requiring intubation. The risk of waiting another week was that my uterus could rupture and I might not be as lucky as last time to survive. I told the OB I wanted to go ahead with the delivery but not without hesitation. So when she cried and she continued to breathe on her own we were relieved!

Catalina had been talking about the baby on her Tobii for a few weeks leading up to the delivery. She was also picking to play with a babydoll more than she had ever cared for before. So I thought she would be super excited and have an easier time with the new baby. Tomas didn't really understand about the baby prior to delivery. I was worried about the shock to him when I would be gone for several days then return home with a little baby that was in my arms, taking time and attention away from him. But interestingly their reactions were opposite. Tomas is ecstatic to have a baby. Baby is his favorite word right now. He gets so excited to see baby.

Catalina on the other hand was more resistant to the idea of the actual baby. Maybe it's because she can't express her emotions as easily? Maybe it's because she remembers the last time I brought home a baby? Maybe she's just in a tough spot and she wasn't ready for me to be less available? Maybe it's the revolving door of visitors (family) helping to take care of her? I know the time away from her is hard on her, so she was definitely mad at me when I got home. But now she seems to be coming around. We kept her routine with all her therapies as they had been so she would still have that.

But now things seems to be getting back to normal. Francisca has been amazing. We went to the pediatrician at 6 days because of jaundice and a weight check - she was almost back to birth weight already! She goes about 4 hrs between feeds, with 1 or 2 three hr stretches, she is awake more in between now, looking around, she isn't much of a crier except if I am not ready to feed her the minute she wants it. We are excited for this new bundle in our family! Below are just more pictures. Enjoy.

Francisca at 8 days Tomas is obsessed w/these cowboy boots

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Cata in her princess dress

Franci getting her footprints Quiet time at our house :)

Cata enjoying some alone time with mommy

Tomas snuggling with Tia Alicia

Learning to draw Enjoying the outdoors

Don't worry, keys aren't in the car :)

Swings with Tia Alicia Park with Tia Alicia

Franci snuggling with Tia Alicia

Daddy loving some awake time with Francisca