Rua - medical update

Since the last time I posted about Rua's ectrodactyly, we've met with the orthopedic surgeon again. We were definitely curious to see Rua's xray images and hear what the doctor had to say. We had gone in previously to get the xrays done, but unfortunately we had to redo them the day of our appointment as well. Rua did not like it either time at all. It's no wonder they weren't able to get good enough pictures the first time around.

However it was definitely fascinating to see the images and see how her little bones are formed. Some of her fingers have fused bones, some are side by side bones, but with fused skin. One particularly interesting thing was that her left foot has polydactyly - an extra toe!  Or at least the bones inside for an extra toe that never emerged. This extra bone is slanted though and pushing on her big toe, which already sticks out pretty far on the side.

Rua's feet

Rua's left hand

Rua's right hand (couldn't get this picture to upload the rotated version). Her fingers are overlapping so it's hard to really see them.

Which leads to the doctor's plan of action. He suggested that we have surgery done to remove this extra bone so that it won't continue to push on her big toe and push it even further to the side. He also said another optional surgery would be to remove her little finger on her right hand. This finger comes off of one of her other two fingers on that hand. It has a bone inside but is a floppy, useless finger. He said that there is a possibility that it could get in her way as she continues to grow and use her hands. But he left that completely up to us.

We agreed on the surgery for her foot, that seemed to be a no-brainer. But that cute little finger! We haven't really decided on that yet. It doesn't seem to bother her at all now, and I hate the thought of removing any part of her.

So we went ahead and scheduled surgery for October 15. Soon, I know!  We wouldn't have done it for several months probably if we hadn't found out that she has a hernia that will need surgery to repair. This needed to be done in the next month or two and we figured that we would prefer to cut down on the general anesthesia that she has to get if possible. The surgeries will be done right after the other and will be outpatient. Recovery is supposed to be pretty easy, here's hoping.

Although these are minor surgeries and needed ones, it is still a scary thing to think of sending your child off alone to have surgery. What if something went wrong? What if she is scared when they take her away from me? What if she is in a ton of pain afterwards (they tell me it won't be too bad)?

I will be glad when Oct 15 is come and gone for sure.

Abby - story time

We have an awesome story time that we go to over on Coronado Island. It is by far the absolute best I have found. Apparently Abby thinks so too, because she has taking to having story times with her babies and animals. And it is set up exactly like the Coronado story time, complete guitar a la Mr Mike. It is just about the cutest thing I've seen her do.

Letter to Rua - 11 months

Sept 5 2015

Dearest Rua,

11 months!  The countdown to one year is on! This month milestone almost slipped by unnoticed, you keep me too busy to keep track of things very well. You are quite the busy little girl and you move so fast. It is exhausting trying to keep up with you. It's a good thing you've got an Abby to help out. When she isn't worried about you stealing her toys she is quite loving. She treats you almost like one of her baby dolls, even trying to lift you and carry you around (arms wrapped around you from behind). I learned today that she can now lift you up on things, ie the couch. Oh dear. But you eat it all up, laughing hysterically until you get hurt. Or until you reach for one of her cars and she flips out. You are starting to hold your own though, you hold on tight to things and shriek back when she tries to take things away from you. Now, if I could just get you guys to share and have no shrieking on either end.

Other than your up and down relationship with Abby, some other fun things about you at 11 months:

• You are becoming increasingly agile and balanced. You have started to have short spurts on standing on your own (like 2-3 seconds). You like to sit kneeling down on your knees. You have starting climbing things. I looked over at you today to see you sitting on top of Abby's little table. You can push Abby's shopping cart around. You like to walk holding on to my hands, and now on to just one of my hands at times. 

• You have a couple of words, or rather, word approximations that you say. The most prominent is 'Da' for Dad. You very excitedly say 'da' whenever he comes home or when he calls on the phone. Occasionally you say 'ma' for mom. The only other one I think you say is 'ba' for bye. You say this sometimes as you wave your arm. We have been doing signs, but so far none from you, unless we count the waving. 

• You are still making lots and lots of messes
• You like to put necklaces on and off. Purses too. 

• You love to eat - some favorites right now: watermelon, cheese, smoothies.

• I'm starting to wonder if you already need your own baby doll, because you sure like to give Abby's lots of love

• You like to push toy cars around
• You can throw a ball (1-2 feet) and love to have me throw them back to you.
• You absolutely love water! Bath times continue to be some of your favorite times. They are tiring for me because you are constantly standing up and I am constantly sitting you back down. You love love the beach too. You are fearless and crawl straight into the water

I still get soo many comments from people about how happy you always seem, and this is definitely true. You constantly light up with your beautiful smiles. Those smiles sure help make things easier when I am exhausted from yours and Abby's endless energy. So keep smiling.

I love you

Love, Mom

Letter to Rua - 10 months

August 5th 2015

Dearest Rua,

Hey beautiful big girl, you are ten months old! 

This month you...

• Officially left your adorable tummy crawl behind for the hands and knees crawl, often now the hands, one knee, and one foot crawl. You can move so fast too. Your favorite places to dart to are the bathroom (you have discovered how amazing the toilet paper roll is) and the big bookshelf. That bookshelf is probably your favorite place in the whole house, and you happily pull down books over and over and over again.

• You are cruising along furniture. No attempts to let go, but your balance is improving rapidly. You can easily hold on with one hand while to look around. You are much more confident and agile, up and down and all around you go.

• You like to dance and bounce up and down when you are standing. 
• You have the most adorable, mischievous grin. A favorite time to employ it is during bath time when you constantly pull yourself up to stand, looking at me slyly with a huge grin, laughing as I say, 'sit down Rua!'. You listen and sit down, but two second later, looking at me with that same grin, you are pulling yourself up again. This happens at least 20 times each bath. 

• You discovered stairs this month. We don't have any in our apartment so you just haven't been exposed to them. But we were visiting some friends and there were stairs. You noticed them right away and made a beeline for them. You knew exactly what to do and thought you were so clever to have figured it out. 

• Messes, you love to make messes. Pulling down books, ripping apart newspaper or any other paper you can get your hands on, pulling apart Abby's carefully put together puzzles (she doesn't like this one so much). If there is a mess to be made, you are on it.

• Messes of course extend to eating. Along with being messy while you eat though, you have started a new trick of throwing food on the floor. And your spoon. Drives me crazy. 

• Your favorite foods are: Hmmm, everything? You like fruits, especially melons and berries. You really like smoothies. You have mastered drinking through a straw so you just go at those smoothies.

• Dad was gone for a couple weeks this month and you were so glad when he came home. You could not stop grinning at him and wanted him to hold you constantly that day. It was great to see. 

• You went on your first camping trip and had a blast. You didn't roll around in the dirt nearly as much as you felt you should though, sorry about that. :)

And now here goes another month! 

Love you!!

Your Mamma

Rua - 9 months stats and medical updates

We had Rua's 9 month check-up yesterday and here is how she measured up:

Weight: 16.13 lbs         26th %tile

Length:  27inches         26th %tile

Head:     17 inches        31 %tile

She only had to get one shot but you would have thought it was ten by how much she cried! Poor thing. We came home and she crashed for the next 4 hours.

She has had lots of doctors appointments this month, visiting a geneticist, getting an ultrasound, xrays in addition to our monthly OT visit, all in preparation for our upcoming visit to the Orthopedic surgeon next week, who we haven't seen since she was 3 months old. 

The geneticist was a simple visit, she visited with us and observed her and told us it was obvious there was no other syndrome connected with Rua's ectrodactyly. Which was great news! We already figured that was the case because in every way she is the picture of a normal, healthy baby. The geneticist ordered the ultrasound because kidney problems often are associated with ectrodactyly, but that came back normal.

The OT has been a monthly visit, mostly to work on her left hand that has one bent finger She has had so far four splints made, all with the purpose to help straighten out that finger to make it more functional. She wears the splint at night, which has made for some hard nights, especially with the current splint. This splint keeps the arm straight so she can't bend it and chew on the splint. The problem is, that is also the arm with the thumb she sucks. So there goes hermethod of self-soothing. Needless to say, there are several nights where she is already cranky enough and there is no way I am attempting to put that thing on which only causes more stress and tears. 

One more week and we will have a better idea of the doctors plan and recommendations for any treatment or possible surgeries. In the meantime, she is sure using what she has just fine. Has that pincer grasp down pat, grabs and hold onto anything and everything, and has no problem standing on those cute feet of hers. So who knows, maybe they won't do anything.

Letter to Rua - 9 months

July 5, 2015

Dearest Rua,

Happy 9 months beautiful girl! You sure aren't looking so much like a baby these days. You are getting so big and so wriggly and full of energy.

                         

Some things from this past month:

• You've perfected your tummy crawl and in just the last couple of days you have started to do more of a regular crawl
• You can pull yourself back up to a sitting position from crawling.
• You are constantly pulling yourself up to stand on anything you can get your little hands on. Even if it's something 5 inches from the ground, you sure try! And each time you are successful, you break out into your beautiful smile.

• You now have 8 teeth.
• You love music and bounce up and down to any music that plays. You especially like me to sing songs like Wheels on the Bus, Popcorn popping that have movements

• You get so excited when we talk to Dad on the phone and his picture pops up.
• You chew on anything, including Abby's shoes

• You love to be outside. You get so happy when we go to the playground. We ran past one today in the stroller and you got so excited and I felt bad because we weren't stopping. You sure did too, and let me know it!

Love this picture, could look at this all day, that smile is so infectious!

• You also have so much fun at the beach in the sand. You think the sand tastes good too.

• You are sooo attached to me. I can't leave the room without you crying and trying to crawl towards me. Oh and if I even dare try to use the bathroom or shower, you are one mad baby.
• You are slightly more interested in books. At least, you enjoy turning the pages. But that's about all you want to do with them. 
• You have started pulling books off of shelves and making big book messes, so I guess that's one more thing you like to do with them. :)
• Whenever you get within arms reach of any other person, you go straight for their hair and try to grab it. Abby especially falls victim to your hair pulls.

• You still love to eat, and even look for any remaining crumbs in your bib.

• You are babbling a lot more. Mostly da-da-da.
• You recognize your name

Time is going so fast, every day is so busy and its hard to just keep up with you! But it's so much fun too. So grateful for you, beautiful Rua.

Love always,

Your Mamma

Fourth of July 2015

We had a very simple Fourth this year. Pancake breakfast at church in the morning, followed by a drive to Fontana to spend the afternoon and evening with my family. We had to leave before the firework fun started, which made Abby a little sad, but thankfully it turned out great because we were able to watch parts of different shows from a distance as we droves down the freeway. And without the noise, so Rua slept through it all! :) Next year though, we'll take Abby to a proper show.

And of course, we took some pictures of our girls.