Sophia crawls across the room, and Zoe still has both eyes!

081sozo081.jpgSophia can do the commando/belly crawl across the room now! We usually see it when she wants to get to people (usually her sister). We are working on the concept of “gentle,” but Sophia still wants to explore Zoe by squeezing, poking, and scratching. Sometimes, though, she’ll just prop on her elbows and stare at Zoe. It is very sweet; I can’t wait for Zoe to interact with her more. So far, she just smiles at her sister.

Sophia’s new crawling skills came in handy this weekend to get over to play with Auntie Nicole and Siobhàn who were visiting. Soon she can go and get her own diapers and burp cloths! We bought some little pads (from the mom of another baby with a G-tube) to go around her MIC-KEY. We hope they will give her a little padding as she scoots across the floor. It doesn’t seem to bother her, but her G-tube site gets red a lot.

We’ve officially discontinued Sophia’s morning nap as there were several days where she didn’t sleep. We hated for her to be spending that time struggling to sleep if she’d outgrown it and her “circadian rhythm” wouldn’t let her sleep. (Her sleep doctor warned us this would happen like it did with her 2nd afternoon nap; she’d seem like she still needed it, but wouldn’t sleep). We do still put her down if she is obviously tired. Her afternoon nap is still hit or miss and if she does sleep, it is usually for only 20-40 minutes. Zoe seems to have adopted this napping style, too, but there is still hope that she’ll grow into consolidated naps.

Zoe’s night sleeping is still unpredictable, but a few nights she has gone 7 hours between feedings (when she was really tired). The times still vary quite a bit, but the last two nights it was 10:00-5:00, which is great! Other nights she still eats every 2 1/2 hours.

Zoe still doesn’t like tummy time; we’ve tried all kinds of modifications: on our laps, with a blanket roll, on our legs facing out, but she only lasts about 5 minutes. Hopefully, she’ll grow into this, too, so her development isn’t too stunted. She’s also starting to get the little bald patch from sleeping on her back. Guess it is a good time to start wearing all her cute hats.

Sophia got assessed during OT this week, but she really wasn’t very interested in playing with unfamiliar toys. (She’d rather demonstrate her dexterity by grabbing the little piece of diaper wipe hanging out of the container to open it up and then pull them all out!) Her OT had suggested that she would be ready to start manipulating magnets, so we got the alphabet magnets (which she plays with on a cookie sheet since our fridge is not magnetic). She also had the great idea of turning pictures into magnets with the tops of juice cans. Sophia loves to play with the picture of herself (we have to make some more for her of other people). Sophia is also just starting to really enjoy playing with cause and effect toys. She’s been able to turn her soother on and off for quite awhile, but this week she started pulling the lever on her little table to make the train go and finding and hiding the jack-in-the-box bear that her PT left for her to play with. Its so fun to watch her starting to learn things.

We also had Sophia’s IEP meeting this week. She’s met many of her goals, but has many others yet to meet. She had a good time, sitting in the middle of the group, watching everyone talk about her. The principal came as the administrator; hopefully, we’ll continue to only meet with the principal to talk about good things! Sophia will be getting more service to work on more of the cognitive/communication pieces. We also got more information on what services are available when she is 3 and ready to possibly transfer to site-based services (not at home), if we can bear sending her. I was relieved to hear that there are mainstreamed options for her, but obviously, we’ll have to see what her needs are in 1 1/2 years. The team didn’t set any social-emotional goals for her, as she is apparently doing fine there. How did two introverted parents get such a sociable outgoing baby? It must be the extra chromosome! She’ll be getting more social opportunities as the girls are now the “first daughters” of Milwaukee Avenue since John was elected president of the Association. Hopefully, we can keep the paparazzi away…although the girls are clearly used to the camera.

On Friday, I went back to work; those 12 weeks sure flew by! It was very sad to leave them for that long. I think Zoe and I had only been apart 3 times ever, for only an hour or two at a time. I didn’t even realize I’d been snuggling Zoe the whole morning before I left until my mom asked if I didn’t think she’d be able to sleep in her bed? Yes, but, why? Sophia finally woke up right as John was shooing me out the door, so I didn’t have to start my day without my Sophia hug and kiss. I’d been in to change her and help her when she coughed a couple of times, but it isn’t the same. The girls, of course, dealt with our separation much better than I did. Grandma came for her usual Friday visit, and gave Zoe her bottles while Papa fed Sophia. I don’t think she loves the bottle, but since she loves to eat so much she eventually tolerates it. The only glitch was that when I got the pump set for them for Sophia’s first feeding, somehow I zeroed out the rate instead of the volume, so she was at .1 ccs/hour, which meant she only got .1 ccs the whole time they fed her! Mom thought her teeth were really bothering her that morning, but the poor thing was probably hungry! Its great if we can get her to be hungry, but I still don’t think she is really ready skills-wise for us to starve her to get her to eat orally. We’ll keep working on it, though. Her gag does seem to be improving as long as we don’t give her too much food or liquid or put the spoon all the way in.

The girls had a fun weekend of visitors snuggling them and watching them show off. Our newest neighbors Dave and Andrea (who is also my colleague) came by Saturday morning, and then my cousin Diana with her husband Jason and daughters Kathryn and Rebecca came by in the afternoon. They’d driven from Albuquerque so had lots of energy to play with the babies and Mukwa and follow John around providing a glimpse of what life is going to be like with two overly-energetic daughters. Sophia couldn’t stop hugging poor Rebecca until she started teaching her how to blow bubbles (she seems to catch on much quicker watching another little one do it; we hope she and Zoe will be good for each other). Kathryn was learning about the family connections, and when we started talking about them going out to my Mom’s house to spend the night, she said incredulously: “You know Aunt Marlys!?!” They wanted to dress Sophia up as a princess, but hopefully, we can put that off for awhile yet.

Grandma Jackie arrived Sunday morning for a week long visit, and Brenda, John, (friends of Jackie’s), Siobhan, Aisling, and Grandma Marlys came for lunch. Sophia sure loves having friends over, but Zoe, on the other hand, isn’t so sure she likes anyone but her parents holding her these days.


  1. Thank you for having us over for lunch yesterday – delicious food and charming company! It was kind of you all to share Grandma Jackie Time with us. You and John are incredible parents, Sophia and Zoe are lucky little girls. Jackie is so proud of all of you. I continue to marvel that John is located here in Minnesota, a destiny none of us could have imagined when we were neighbors in Houston 30 years ago… Your Green Lake Getaway awaits you any time! Love, Brenda and John

  2. Cousin Kelly says:

    That is the most precious picture of Sophia!!!!!!! I hope you have a great time with Grandma Jackie this week!!!