Happy Thanksgiving!

Good food, good friends, good times. We have so much to be thankful for.

Happy 2nd Birthday Sweet Ruby!

Sweet Ruby Christine,

We're so thankful for you! You are such a blessing to our family and we're excited to see the little person you are becoming. You are full of life and joy and haven't met a chair or stool or cabinet you won't climb.

You express everything that's on your mind and we never wonder what you are thinking. You are full of compliments and you frequently tell me you like what I'm wearing, or "I love your hair mommy!" You're also a bit of a drama queen...toe stubs and perceived injuries require a kiss from mommy in the exact spot of pain and that lower lip of yours has daddy wrapped around your finger.

You love to dance and sing and do ballet and keep me entertained all day long and sometimes well into the night! Daddy and I frequently wake to hear you singing to yourself at 2 am...only to fall asleep again.

You have brought so much laughter to our family, sweet Ruby. You are, quite simply, the delight of our lives.

We love you!
Love,
Daddy & Mommy

Coping

I received an email today from a friend through a list-serve I'm on for tube-fed kiddos. They're having trouble helping their 3.5 year old to cope with separation after so many hospitalizations and proceedures. In responding to her email, I realized just how much we've learned by walking through these past 4 years with Elizabeth. I know some folks who read this blog might be facing similar circumstances, so I thought I'd post my response here too (names have been changed):

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Elizabeth continues to be hospitalized (3 times since July, and two of them were for 10 days each!) and we continue to process with her all the things you're facing with Eva. While her experiences don't exactly overlap with Eva's (we haven't had to leave her alone in the hospital since her initial 2 month stay in the NICU.) she is close to Eva's age (Elizabeth just turned 4) and has spent most of her life at the mercy of procedures, drs. and nurses and simply doing what has to be done to make her body better even if it traumatizes her little spirit sometimes. It breaks my heart.

While family oriented hospitals and child-centered care are critical...I've become QUITE demanding when it comes to how we handle blood draws, IV sticks, surgery prep and other necessities...we also spend a lot of time at home and on our way to and from the hospital reorienting her.

*We've found music has been a wonderful tool for us. (We particularly rely on our faith and do a lot of scripture memory and sing songs about how much God loves us, how he will always be with us, how we don't have to be afraid and how he will take care of us. There's a Hermie & Wormie CD about being brave that has been so wonderful and she sings the songs when she's stressed or afraid and I know she's doing her best to muster courage.)

*We use our portable DVD player with abandon when she's going to or at an appointment or has to stay in the hospital. We've found that being able to escape the real world and hide in her safe little space has been really better for her in the long run. She never stays there forever....just when she's coping. That said, we're REALLY careful about letting her watch anything even mildly scary...since she seems so much more vulnerable to feeling afraid....mostly just happy, singsongy things.

*she has a silk blanket that goes everywhere with her, (at home it's just for sleeping, but when we do hospital or dr. stuff she gets it all day long if she wants) I also find that if she's having separation issues, having her Kiki (that's what we call it) with her provides her with a lot of comfort.

*We also do a lot of drawing and talking about procedures...playing Dr. with her dolls, (this toy has been so cool) practicing coping techniques with her dolls..."okay, it's time for your blood draw Dora, which arm do you want us to use? okay, I'll count to three...one two three....stick...owie, owie owie...all done! Wow Dora, you did so well! Did it hurt? do you need a band aid?" we do lots of that. As soon as she could handle it (3ish) I started being honest about where we were going and what we were doing...I felt better about not lying to her, and believe it's built a little trust...She's JUST gotten to a place where she can believe me if I tell her something won't hurt, or there are no sticks or we're NOT going to the hospital, only to Target! :) (However if she's already worked up, she'll freak out even for a weight or height check...so we're still in a window where her understanding of what's going on wavers)

*Finally, we really try to reinforce our presence, our constancy, and her safety...we tell her things like "mommy always comes back", "I'm staying right here the whole time" etc. Elizabeth is VERY concrete, so the more "rules" we can give her, the more we structure and order and routinize hospital stuff, the easier it is for her. When she does get beside herself we also do some calming techniques like taking deep breaths, blowing out, counting to 10 in Spanish, and giving her things to repeat...and having her sing her ABCs..."let's sing our ABCs once and then it will all be over". We let her sleep with her comforting songs on CD when she first gets home if she needs them, we also try to give her lots of room to need to control her environment in the days after a hospitalization. We do jump back into structure pretty quickly, because that's how Elizabeth functions best, but we let her wear certain clothes, carry around her Kiki and have a little more say in how the day goes while we ease back into our old life.

You probably are already doing some or all of these things, but hopefully there's something helpful that you can tweak for your purposes.I know some of it is more for inside the hospital, but the more we can minimize her fear and sense of aloneness there, the easier it has been to come home and get back to normal. We also do a LOT of praying for Elizabeth's little spirit to be protected from fear. I don't know how you'd feel about that, but we believe it's helped protect her mind and heart through some VERY traumatizing experiences and allowed her to "bounce" back and feel safe and at peace much more quickly.

Back from Cincinnati

We're back from our whirlwind trip and can call it a measured success. The girls did great on the drive, but 7 hours doesn't feel that much shorter than the 8 it took to get to Kansas 2 weekends ago. We had lovely accommodations and the girls did well with all the schedule changes. The appointment with Dr. B was helpful for some things and not so helpful for others. In retrospect, my expectations were a little high and overall, one of the main messages we took away was very positive: We're managing her care really well and despite not being seen by a "Turner Syndrome Specialist" we've managed to triage most of the major complications that girls with TS experience. We didn't learn anything that dramatically changes what we're already doing, but we are reassured that she's received top notch care from the beginning of her life. We also confirmed that a number of her other medical challenges are not directly related to TS, but that a few of her issues may be exacerbated by TS. So, we have a bit more to think about.

 

Most helpful, he was able to give us some input regarding growth hormone therapy and some direction for pursuing auditory processing and developmental assessments. We could return to Cincinnati in a few years for a developmental assessment with a Developmental Pediatrician who works with all their Turner Syndrome patients, so we'll keep that on the table, but for now, there's no reason for us to return soon and we feel good about that. (Please don't make me take a road trip for a few more months!) :) Fortunately, we can handle by phone any future questions that come up.

 

So thanks for your prayers, we are glad that we went and are thankful to know we're doing our very best to give Elizabeth the optimal care.

We're off to see the wizard!

Okay, maybe not the wizard, and this time we're not even heading toward Kansas, but we're pretty excited to visit Cincinnati Children's Hospital to be seen in their Turner Syndrome Clinic tomorrow by a regional specialist! We've been planning on this for over a year now and the timing is really perfect since we've had more questions come up in the interim months since we made our appointment. Mainly, we're hoping to pick Dr. B's brain to find out what of Elizabeth's medical complications are Turner related. We'd love to have a bit more of a road map as to where we might be heading with her care and are looking forward to getting feedback as to some specific therapies that could help maximize Elizabeth's strengths and mitigate some of her weaknesses. Personally, I'm super excited at the possibility of meeting someone with Turner's Syndrome in person...maybe in the waiting room?? I don't know what to expect, but we have high hopes.

 

So this afternoon we'll pack ourselves into the car for our 2nd road trip in as many weeks and visit 4 states, three of which I've never set foot in...Indiana, Ohio and Kentucky. Would you join us in praying for a safe trip, a pleasant drive for the girls (and their parents), a peaceful, grace-filled visit with Dr. B and realistic expectations? This past weekend, a nasty GI bug landed Elizabeth back in the hospital for 2 nights for IV fluids and while she's mostly recovered, she's still a little stressed about more procedures, so I'm not certain how it will go tomorrow when we visit a hospital and a crew of doctors she's never seen. Please pray that God would guard her heart and give Matt and I discernment as to how to best help her process the day.

 

These pictures are of the girls after Elizabeth got home (Ruby's wearing a shirt that I wore as a toddler). We've had some beautiful fall weather and the girls can't get enough of the leaves!

Learning to Wait

This is a song I grew up singing and it's a great way to help the girls learn to wait for things...BUT we've gotten into a little cycle after dinner. Ruby is all done, asks to be excused and we say, "you'll need to wait until the family finishes. Have patience." Then she launches into the most annoying version of this song...conceivably to annoy us into letting her down! Too funny.

The Itsy Bitsy Spider

Our dear girls singing together...nothing sweeter.

Heartland Vacation

Not to make anyone to jealous, but while our nephew Theo was weekending in Spain, Elizabeth and Ruby go to go on their first road trip to THE heartland of America, Hillsboro, Kansas! We enjoyed 15 hours total of car time reading books, playing with stickers, singing lots of songs, munching, munching, munching, and even taking a few naps. We had some wonderful family time with Grandma & Grandpa Harms, a few of Matt's Aunts and Uncles and cousins, as well as some 2nd cousins we'd never met! We saw all the "family spots" and ate some delicious food. We were thankful to get to celebrate Great-Grandpa Jost's 95th birthday in person. What a life he's lived!

The girls had a grand time (they especially loved their second cousins) and we were so thoroughly impressed with their "travel-ability", we thought we'd turn around and drive them to Cincinnati next week for a Turner Syndrome Clinic appointment for Elizabeth. We arrived home Sunday evening, completely exhausted and totally unprepared to start the work week...but really, really thankful for our family...and air conditioning, and in-car dvd players, and a 70 mile an hour speed limit and lunchables, and dr. pepper...