Seven Months!

At 7 months, Rilynn is a slobbery kisser, hand banger, hug giver, double hand waver, horrible night time sleeper (thank you spica cast), decent napper, knows what she wants kind of girl.  We have ourselves a girly girl.  Like every girl, she loves diamonds especially my wedding ring.  She is fascinated with hair; she loves to pet and/or pull my hair and Travis's arm hair.  She twirls her own hair when she is tired. I've joined a "Mom's group" on Facebook and we've gone to a couple of play dates.  It is kind of like online dating, but for mom friends.  I thought it would be totally awkward, but so far so good!  It has been nice to meet new friends for Rilynn and me.  One of our new friends let us try out her daughter's amber beed teething necklace.  I was a skeptic, I thought sure and we will also throw some salt over our left shoulder before bed.  I was desperate to try anything after 4 nights in a row of her waking up every 30-60 minutes. But, her first night after wearing it she slept!  She only woke up once.  A good night used to be 3 or 4 wake ups.  Now maybe it was coincidence, but we will keep trying it and see if the sleep trend continues.  

Talents & Tricks:

* She was able to roll over from stomach to back in her pink cast, but no such luck in the green one.

* She can scoot around in her cast moving mostly backwards and in circles but she is starting to move forward a little bit at a time.  Her arms are going to be so strong from hauling this cast around.

*Loves to drink from a cup by herself, even if it is just to spit the water back out. 

Firsts:

* 2 bottom teeth

* Haircut!  Thank you, Eileen, for getting rid of the mullet.

* Finger food, Gerber Puffs.

* Ponytail

Favorites:

Food: anything with banana, squash, or pear is eaten faster and with more enthusiasm ("mmmmm"s), but she will eat anything.

Toy: still loves Sophie, anything with or a tag on it or something she can pick up and throw is also fun.  If it doesn't fit in her mouth or make a loud sound when she bangs it, she isn't interested.

Noise: "Hi!" to get your attention or "Aye" I didn't think we had any Canadian in us.

Baby item: Ivy Rose spica chair.  It saved my sanity! 

First ponytail. 

Pre-haircut mullet. 

Typical play time in her Ivy Rose jellybean chair.  Best purchase we've ever made. 

Size 3T leggings cut into leg warmers are a must have for scooting the cast around on the floor. 

Still stylish. 

My first birthday celebration as a mom. 

She does fantastic at restaurants in her travel booster seat.  Way easier than when she had to be in her car seat.  She loves being a big girl sitting in a chair at the table with us.  

Piano lessons/banging session

Just before the first hair cut. 

And there goes the mullet!  Hurray! 

Josie will not be left out.

Demanding more food.  

Blue eyed babe!

2 teeth!

Next surgery is Wednesday, September 3rd.  

Besties!

Focused on her puff. 

She loves her doggy.

Our perfect baby. 

Back to Waiting...

Last Tuesday was a big bummer.  Rilynn went into the OR around noon.  The plan was to take the cast off, check her right hip's progress using an arthrogram, do the open on the left hip, and recast (preferred color purple back up green).  It was scheduled for a 200 minute procedure so when I walked out of the bathroom to see the surgeon talking to Travis after an hour I knew that my wishful thinking that everything magically went into place and we could get rid of the cast was likely not what he came out to tell us.  When they did the arthrogram, an X-ray where they inject dye into the hip bone, the femur head was still in place but looser than they were hoping for.  Both of our surgeons felt that it was better to stabilize one hip before starting on the other so preferred to wait another 3 weeks and check again.  I was really disappointed but we trust our surgeons and decided to stick with their opinion and wait.  So, we had a cast change instead.  Her pink spica was loose fitting; she had a lot of wiggle room in her tummy area to roll and twist around, it only went to her waist, and her left leg was not fully casted.  Well, her new cast is quite tight.  It goes up higher, to just below her nipples, her left leg is fully casted, and there is no wiggle room.  This more aggressive cast will hopefully speed up the process of the tendons to tighten.  They also adjusted the angle of her right leg to a position it naturally wanted to go to.  The new spica is green.  Travis got to pick this one and it was intended to be a neon Seahawks green, but it turned out to be more of a Oregon Ducks green.  EEEEEWWWW!  She won't be wearing any yellow in the next 3 weeks.  We really want a purple cast, but this is the 3rd time they haven't had purple.  I'm beginning to wonder if our surgeon is color blind because one of the nurses told us purple was a color option.  If you have a connection to ordering cast colors for Doernbecher, 8th floor, Maple leaf, please order us some purple. This new cast comes with more restrictions.  It is taking us some time to adjust to it.  She no longer fits in the hiking backpack.  And we have to be extra careful not to bump her tiny feet on things like door jams which I've done a couple of times already.  Our surgeons, anesthesiologists,  and nurses at Doernbecher are awesome, but I wish we didn't have to spend so much time with them; they are starting to know who we are.  I'm sure Leslie (my new friend from Kaiser scheduling) will be calling this week to schedule the next go around in about 3 weeks.  My biggest frustration is we are now adding 3 more weeks to our total time in the cast, additional trips to the OR, and more times going under anesthesia.  Our poor little pumpkin!  Rilynn is a trooper!  She's still pretty happy, eating lots, and loving her new purple Ivy Rose spica chair with her name on the back in pink.  We just love our little munchkin to pieces.  I'm not sure that she will be rolling much in this cast, but I wouldn't put it past her, the girl is determined to move.  Unfortunately, the car bed is still with us, she just doesn't quite fit into the Hippo car seat.  Hopefully in 3 more weeks we can ditch the bed and get the car seat because the bed is a pain and Ri doesn't like it much either.  I've had several people ask me what will happen if in 3 weeks her right hip is still not stabilizing and the answer is, we have no idea.  There are additional surgeries, but those aren't options until she is at least 18 months.  They can use pins to hold the femur head in place and add a "cup" to increase the size of her socket, but she needs to have more developed bone for that to happen.  At this point we can only hope that we don't have to worry about that and we see significant progress in 3 weeks.  We are ready to start hearing good news any time now.

Rilynn waiting for the surgeons with Daddy.

Not the green we had in mind, but it's only 3 weeks and there are only so many colors in the rainbow.  I think we are up to having at least 4 casts now.

So happy she can finally eat again.

We still have the stupid car bed.  I HATE this stupid thing. 

Ivy Rose spica cast chairs are the best thing that ever happened to a hippy girl.

Rilynn spends most of her waking hours that we aren't holding her in this lovely contraption. 

3T leggings cut into leg warmers are also wonderful so that she can scoot around on the hardwood.  She can move backwards and in circles. 

Getting strong.

2 weeks with spica

Warning: this post has lots of venting.

It has been 2 weeks since our little Ri girl had her right hip open reduction and we welcomed the spica cast.  1 week to go until her left hip.  I'd love to say that it hasn't been so bad, but in all honesty it has.  I keep trying to stay positive and find things to look forward to, but it seems like every time I find a positive, Rilynn cries out of frustration or discomfort which breaks my heart.  I don't need a pitty party, if you feel bad for someone, feel bad for our poor little babe; but I think being honest is the most healthy way to answer people's questions.  

FAQ

How is she? 

Frustrated, but she is happiest if we are holding her.  She does not like to lay down for long and most of her contraptions keep her slumped over since she can't bend at the waist and she doesn't fit quite right in her high chair, modified Bumbo, or swing. I just ordered her a custom made purple spica chair (yes they have special chairs just for the cast) with her name painted on the back and I cannot wait to get it.  http://ivyrosespicachairs.com/ is where we ordered from.  I'll keep you posted on how it goes when we get it; I've heard it is a miracle chair.  We change her position every 30 minutes or so.  Don't get me wrong, she is happy, but not as happy as she was.  There are more tantrums and tears than ever and seeing her unhappy is the hardest part.

When will it be over?

We don't know.  We are hoping she is cast free mid October, but we don't have a date yet.  After that, she might be wearing a rhino cruiser which is a plastic brace over her hips that keeps them in place.  Maybe 23/7, maybe just at nights, maybe not at all and again, we don't know how long.  As far as when do we get to hear "she has healthy hips", unfortunately that's years away.  Hip dysplasia is a waiting game and I HATE waiting.  First we wait to see if her hips stayed in place after her open reductions; if they don't more surgery.  But I have a feeling that won't be necessary.  Then, we wait to see if her sockets grow around her femur head, because if they don't we go back to the OR.  Next, we wait to see if she gets AVN (avascular necrosis) which takes 6 months to a year to diagnose after being out of casts and braces.  When Rilynn is fully grown and her hips look and feel great, that's when we get the good news of healthy hips.  In the meantime, she will have x-rays every few months for a while and then every year to check everything out.  

How is she sleeping?

Horrible.  Our worst nights are when she wakes up every 30 minutes.  I've slept on her floor once already.  Our best night was only 4 times.  I have to change her diaper at least once anyways so sleeping through the night isn't realistic, but I'd love to get back to her predictable routine of a single 3 am feeding.  We don't quite know what it is that wakes her up.  It could be discomfort from being unable to change positions or it could be muscle spasms from the cast.  Many other parents have experienced the same thing.  Some kids do just fine, some kids get used to it, some kids continue like this through it all.  She is propped up with a pillow under her fitted sheet for comfort and the keep pee and poo out of the cast.  It is safe, there's not a chance in hell that she could roll over and suffocate herself.  We also have our bedroom AC unit in her bedroom to keep her cool in her hot cost.  

How do you change her diaper?

It takes time, but until yesterday I would have said it was easy.  I consider myself a clean person and since I need some positive goal to work towards in this stupid situation, I wanted to have the cleanest spica cast out there.  I was well on my way to that award and feeling pretty proud that I had mastered the diapering and then there was the incident.  Long story short it took Travis and me 50 minutes, an entire bag of Costco wipes, and a spatula to clean her up and in the end, she still kind of smells like poop.  So much for my award.  Wet diapers are easy though.  We wipe her and the inside of her cast (which is stylishly taped up with zebra print duct tape because it is easier to clean than the cast lining) turning her from front to back, blow dry her on the cool setting until everything is dry, tuck a poise pad inside the cast, add a newborn diaper tucked over the poise pad incase of leaks and to "catch" the pad if it becomes heavy, and secure both of those with a size 6 diaper over the whole thing.  Sounds complicated, not so bad as long as it's just wet.  

How are we?

Hanging in there. Some days are way better than others. I couldn't do it with out Travis, the best dad Rilynn could ask for.  Weekends are so much better with his help and presence.  It is easier to go out and do normal things with both of us and I am happier with him around. My parents took Rilynn (and Josie too) for a full 24 hours last weekend which was such a great break from the stress and allowed us some much needed Travis and Steph time which we took full advantage of on the boat, beer tasting, eating out, and sleeping.

Music is always a good distraction for Ri.  Every time I hear The Hokey Pokey on Pandora I laugh because that really is what her life seems to be all about.  We put her right hip in, then the right hip came out, we put the right hip in... Thank God the song doesn't say it comes out again.  

I really am trying to stay positive even though this whole post has been me complaining.  I try to find things to look forward to and here's what I have so far:

Holding her without a huge piece of plaster between us.  

Seeing her chunky thighs again.

Giving her a real bath.

Swim lessons when we are cast free.  Hopefully we can start in October if she doesn't have to be in a brace all day.

I'm pretty sure we are having a cast off party and Travis wants it to be Castaway themed.  

Her Halloween costume that won't include a cast.

Watching her relearn how to roll over, eventually crawl, and WALK!  If we hadn't been so lucky to find her hip dysplasia so early, we would have found out when she wasn't able to walk.  Now, although she will very likely be walking late, she will be able to walk.