Welcome Alex Part 3: Rare Plus One

We are overjoyed to welcome Alexander Charles! This is my blog about Sienna and F.O.P., but adding an entirely new family member to the mix is definitely worth a posting, and could be helpful to other rare families hoping to expand their broods. It turns out I had so much to say, this is part three of a three-part post. If you missed the first two, here they are:
Part 1: Miracle Baby!
Part 2: Hello, Alex!

When Alex first came home we were off to a strong start. Granted, it was an adjustment, since we’ve always had one person fully dedicated to Sienna’s safety. But it was helpful that for Alex’s first 7 weeks, Sienna was in school from 8:15-3:00, where she has a wonderful 1:1 aide (plus all the fun of seeing her friends at school all day!). I’d take Sienna to school in the morning, then walk Alex to the beach in his stroller (got to work off the baby weight!), come home to eat lunch, put him down for a nap (or many days, hold and cuddle him for his nap. You can’t spoil a baby!), then walk to pick up Sienna at school where she would push his stroller home.

But then we hit a few challenges. When Alex was not even two weeks old, Sienna ran a week-long 102-3 degree fever and missed a week of school. I not only had to worry about her and potential F.O.P. implications (viral illnesses can cause flare-ups) but I also had to keep the kids completely separate because a fever in a newborn is an ER-level emergency. I don’t remember much about that week except feeling like it was a game of whack-a-mole running between each of their bedrooms to tend to their needs, worrying that neither one was getting enough attention, and washing my hands raw. Thankfully the fever resolved without complications and without spreading to Alex.

Then, when Alex was three weeks old, Sienna had a fall and hurt her hip. She was coming out of the bathroom when she heard Alex wake up from a nap and fuss. I was right there with her, but she switched directions quickly to try to go see him and slipped, banging her hip on the way down. We worried that the fall could be causing an FOP flare-up since she refused to walk on it at all. Hip flare-ups, from what we hear from the F.O.P. community, are the most painful and debilitating of all, so we were in a panic. We administered emergency prednisone and kept her home from school again for a few days to rest (more whack-a-mole, though at least this time I didn’t have to keep the kids separate). I think Alex cuddles were very therapeutic for her.

After a few days, Sienna was still limping heavily but we thought it best to send her back to school. Most school activities are sitting down, after all, but we needed to keep her resting. Luckily her school had a wheelchair we could borrow, and more luckily, she was willing to use it.
Here she is on field day, not one bit sad that she wasn’t in the mix. (She doesn’t usually participate anyways because most of the games end up with kids in a pile on the floor). She was finally out of the wheelchair by the last week of school and thankfully we think her pain and limping were just from a “regular” injury from the fall itself rather than a true F.O.P. flare-up.

For the remaining 6 weeks of my maternity leave I’ve had both kiddos alone for the full day. Since Alex isn’t mobile yet and is happy (happiest!) to tag along and watch what Sienna is doing, it’s been manageable. I also think he is learning so much by hanging out with his super smart big sister! But he does still require some of his own time, so as a result I have had to give Sienna more independence. I think it’s been healthy for her, and all of us, as we have arranged our house to be as safe for her as possible and she has independence within it. During some of her time on her own she has created art, built entire lego towns, read more than 30 books and done the worksheets I demand so that her brain doesn’t turn to mush over the summer.

We’ve also increased her responsibilities around the house, paying her a small fee each week to help with her brother – she helps when I change diapers (and has changed a few on her own with him on the floor!), keeps the diapers and wipes stocked, and entertains him in his baby gym when I need to throw in a load of laundry (SO much laundry!). She also loves helping assemble baby gear and has helped build everything we have. Just last week I mentioned we could bring up the high chair and she asked “is assembly required?!” I said yes and she yelled “YESSS! I love building things!” Future engineer perhaps?

She also went a little wild making a mess with slime, so we had to put those supplies away… You win some, you lose some! And in full disclosure, she also watched a bit of YouTube Kids each day. Her current favorites are DIY decorating tips and “life hacks.” The life hacks lead to the funniest conversations – today I was cutting something, and Sienna piped in with “Do you know how to sharpen your scissors if they get dull? Cut aluminum foil!” And at bedtime “Do you know how to get static out of your hair? Rub your brush with a dryer sheet!” She has about 30 of these a day. I’ve learned quite a bit!

And also in full disclosure, there were several days spent grumbling “I’M BORED!”. And several times that I tried to clean the playroom to a chorus of “NOTHING is trash!!” And there was also one day when I took the kids out for frozen yogurt, which I was really excited about. Alex was sweetly sleeping in his stroller, Sienna and I each got a delicious frozen yogurt and sat down. Then she panicked “MY TOOTH IS GOING TO FALL OUT IN THE NEXT TWO MINUTES!” We send Sienna’s teeth to the lab for F.O.P. research, so a tooth falling out means we need to get it into a tooth collection kit ASAP so they can harvest and grow the stem cells. So we took our fro yos in the car and I didn’t get to enjoy mine at all. Well guess what, that was 2 weeks ago and that tooth STILL hasn’t fallen out. I made her come along for a make-up fro yo that I could actually enjoy, but maybe that was her master plan all along…

Here is some of the art she made for Alex’s room:
Lighthouse Mosaic (before grouting)

And a unicorn mosaic she made for her room (also before grouting)

I worried about Sienna feeling competitive with Alex, but so far so good. We get her gifts from him now and then (he is a generous baby!) and it helps that he loves her. If I sense she is feeling shortchanged I will bring him in to her room and tell her that he needs his big sister and she just melts. It calms both of them! We also joke that being a second-born, he will have to be used to less attention than Sienna is used to getting. But that backfired on me. One day he was being particularly cute and I said “I think I’ll just stay here and snuggle him all day!” Sienna came back with “I think it’s time to put him down. He’s a second-born, he’ll understand!”
Sure, once it’s her turn, she also doesn’t want to give him up!

Luckily a newborn baby also takes several naps and goes to bed at 7pm, so I’ve had plenty of special time together with just Sienna as well. We’ve done science experiments, baked, played with her dolls, legos, and are currently building a hydraulic robot arm. Here is our rock candy in process – that one looked pretty but was mostly a failure.

We also traveled a bit this summer. Sienna was a flower girl in two weddings, and we traveled for Sienna’s third visit to UCSF for the F.O.P. natural history study.
She is so gorgeous!

ct scan
CT scanning with her new sloth – the UCSF team is always great with kids!

As Alex continues to develop, I’ve been wondering how we will manage when he begins toddling around. For over 6 years, any fall has been a major crisis for us (and she’s only had 2 falls in those 6 years – compare that with the other kids you know who run around like wild animals. I still kick myself for those two falls, but overall it’s an excellent record).

Rare Dad and I both jump out of our skin when friends’ and relatives’ children fall down. How will we now be able to say a happy “Oopsie!” for Alex’s falls while not having a heart attack? And if we are able to do that, how will we maintain our same safety rules for Sienna? And how will we keep Alex from barreling into Sienna once he’s mobile? She is his favorite person, after all! I’ll keep you posted in the coming months.

I’m now approaching the end of my maternity leave, and while I am excited to get back to work on Monday, I’m also quite sad to be away from these sweet faces during the work day. I’m hoping for a smooth transition – Alex seems to love everyone, and Sienna is old enough to help out (and to report on how our sitter is doing)! Wish us luck! If you have any advice for managing two kids (especially when one has medical needs), or for returning to work after maternity leave, please comment below!

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