{Non}Sleeping Beauty

There are two questions that we often get asked regarding Nora's adjustment and development:

1.  Is she sleeping any better?
2.  How is her speech coming along?

In all honesty, I cringe at both of these questions as I can feel myself getting defensive, protecting my daughter and her insecurities and challenges.  Let's start with speech, this is an easy one - click over to Ashley's blog and see her post from yesterday ... I can relate to every single word, Ashley's words beautifully and honestly describe where we are also at with Nora and her speech. 

Now, let's talk sleep or lack thereof.  This is where I feel more protective as a common response we get from others, typically those a bit more removed from our family, is "she's still not sleeping through the night?"  And, then there's the dreaded, "but you haven't sleep trained her?"  It only it were that simple, I have to remind myself not to question our parenting of Nora.  We will never have intimate details of her first 15 months of life and how this plays into her nighttime fears and insecurities.  So for now, we will prayerfully, intentionally and unconditionally love this girl, and we will choose to rejoice over Nora's beautiful adjustment into our family, celebrating the adoption "hurdles" that we have overcome.

Photo taken early one morning this week after Nora was up for a two hour middle of the night stint ... rosy cheeks and all smiles ... thankful ...

Her Voice

Today we are reflecting back to a year ago when we were kissing Nora's big clefty smile one last time and waiting for her to come out of surgery.  I clearly remember holding her in recovery and crying silent tears over how the surgeon had changed her.  They were tears of gratitude, tears of fear and tears of grief. 

Now, a year later, she has found her voice.  And, that is a gift.  She has a belly laugh that is infectious.  She does fierce imitations of animals.  And, she proudly calls herself by name and names each of her family members.  That is, perhaps, the most precious gift.

I marvel at how far along Nora has come, she may still be behind in speech, but she is a warrior.  She is our warrior.

A Nora Update {September 2013}

It's been a while since I've posted a Nora update, here's what Little Miss has been up to:

Growing - she is on the charts for both weight and height now, weighing in at approximately 24 pounds and measuring approximately 33 inches - you go girl!

Visiting the Doctor - and none of the visits had anything to do with cleft!  In the past few weeks Nora has been to the pediatrician on two separate occasions and to the dermatologist once, all for mysterious bumps that are just finally going away after more than a month.  We have stumped them all - the most likely culprit is some sort of bug bite that based on her immune system or lack thereof she has had a reaction.  Regardless, I am happy to say that this ailment seems to be nearing its end.

Included in the recent doctor visits is a visit to the pediatrician after big sister ran her over (purely an accident and Lydia vows that "I will not run Nora over again with my bike").  The training wheel went over Nora's foot causing extreme swelling, bruising and a limp.  After waiting a day, we decided we better take her in ... an x-ray confirmed nothing broken, just extreme bruising.  How is it that we have two active (well, one really active and one semi-active) boys, and we have never had to have potential broken bone x-rays???  This girl!

Finding her voice - Nora is making baby steps with speech.  Ironically, the one word that she says quite clearly and with a bit of attitude is "NO" ... seriously!  God has such an amazing sense of humor - here we are in our naive state thinking we have a daughter that likely has traits that will make her more reserved, more quiet ... WRONG!  This girl has spunk!  And, she is so similar to our other loud and crazy children (God knew she would need a voice to find her place in this family!).

Developing odd insecurities (which kind of make us laugh ... in the most loving sense possible) - just this past week, Nora has developed a fear of walking on planked surfaces or surfaces with holes in them.  She gets to the top of the playhouse, and she is paralyzed by the boards / planks, at the park she climbs the ladder to the slide, gets to the platform and freezes.  Just two weeks ago she was completely fine.  Her statuesque state in these situations makes us giggle though, and we kind of enjoy the snuggling / nestling into us that happens when we rescue her.

Gaining securities - in the past month, Nora has started going to Sunday School with Lydia which means that both Jason and I get to sit through community worship and service together - hallelujah!  Nora has also stayed with Grandma with a few hours (her first caregiver aside from us and aside from the occasional times that Jack stayed with her this summer - after he "graduated" from his babysitting class with his buddies).  And, she has done great!

Becoming a picky eater - she is definitely going through the picky eater toddler stage, but I'm thankful that she is still a good eater.  Some cleft kiddos have extreme oral aversions, but not our girl.  Her issue is not food ... it's sleep (or lack thereof).

NOT sleeping - yes, that's right ... home nearly a year (can you believe it?), and the girl has slept through the night once ... just once ... I have heard from others that the year mark was a turning point, and a sensible friend reminded me that every child is different, a gentle reminder that sleeping through the night may not magically happen next month (thankful for realistic and practical friends, but still praying that the one year mark is like magic - ha).

Thankful for this healthy, spunky little girl

that we get to call daughter!  

Cleft Clinic Day

Today was Nora's first "Cleft Clinic Day", a day dedicated to seeing a variety specialists that then meet, compare and summarize notes and recommend next steps.  It was an exhausting day but a good day. 

Here's the low down ... we saw:

1. The psychologist - developmentally Nora is on track, no concerns there.  The psychologist will play a bigger role in Nora's life as she goes through milestones (preparing for school, entering middle school, etc.).

2. The speech pathologist - this is an area that needs more focus.  Nora's speech is quite delayed.  She continues to see a speech pathologist in our home twice a month, but the cleft clinic speech pathologist has requested that we move to weekly sessions with the local speech pathologist.  We have seen progress in the past six months since surgery, but there is definitely more progress to be made.

3. The ENT - aside from a build-up of "Asian" wax, Nora's ears look great.  No hearing test today as she had a hearing test with our local ENT in March and the results of that were fine (it's not uncommon for cleft kiddos to have a hearing deficit).

4. The surgeon - this was our favorite part of the day.  At time of surgery, at suture removal and at Nora's follow-up in January, the surgeon had some "labels" for Nora ... many of which had to do with her survival instinct and the fact that she is quite the little warrior.  It is really quite easy to see that Doc is enamored with our Little Miss.  For now, no more surgeries in the immediate future ~ her lip and palate have healed beautifully (looks like there will be no cool Kindergarten tricks of being able to squirt milk out her nose, ha!).  In a few years, he will likely do a slight revision on her lip and nose.  And, as she loses baby teeth and as she prepares for adult teeth, we will enter the world of orthodontics and bone grafting (we'll talk more about that when the time comes).

5. The dentist - we also loved the dentist (although she looked entirely too young to be a dentist ... I think the ENT is likely younger than I as well ).  She was so good with Nora!  Cleft kiddos (as well as adopted kiddos from China that likely did not have the same level of prenatal care we often take for granted) generally have a predisposition for poor enamel and decay.  Surprisingly, Nora's teeth looked great (yay!).  She is missing one tooth where her cleft is, but that will also be dealt with later.

Between each of these sessions, there was waiting which lent itself to a bit of socializing with other cleft families with kiddos of all different ages.  We met a mom there with her 9 year old son and his little sister (5), both adopted from China.  They also have four other kiddos at home (three from Ethiopia, another from China), and they are in the paperwork process to adopt a fourth from China.  Humbling ... thankful for these opportunities to connect!

So, that was Cleft Clinic Day #1.  This will be annual "event" with more frequent visits to specialists as needed in-between.  I was quite proud of Nora for doing so well, and once again I was surprised at how relieved I was when the sessions were over ...

Choosing Cleft

I belong to a Cleft Adoption Yahoo group.  While I have not ever jumped in on any of the conversations, it is insightful to read them all.  So many individual and varying experiences and a wealth of knowledge.  I do find myself strategically avoiding the “hard” conversations.  However, there has recently been a conversation that began with a family that is working on their adoption paperwork posing some “simple” questions.  This particular family is at the point of considering cleft as a “minor correctable special need” (quoted from adoption checklists) that they are open to.  This opened up so much candid conversation, conversation that has been both encouraging and terrifying (families broken apart, some cleft kiddos with an unimaginable number of surgeries, years (YEARS) of therapies, etc.).  But, over and over the theme was common – despite the challenges, these children have blessed the families they have become a part of in so many ways.  So often we hear “Nora is so lucky” … at the end of the day, it is clear to see that we are the “lucky” (or, as I prefer to say, blessed) ones. 

So, where are we at?  Or, more importantly, where is Nora at?  Nora is 20 months old now and has been with us five months (how can that be?).  Developmentally, we are seeing a ton of growth in just common everyday things (she is a busy toddler – she has picked up quite quickly on the “explore” every cupboard / drawer and empty them – what a fun game ... for her!).  Nora is a fantastic eater!  If I had to guess I would say that she has probably just surpassed the 20 pound mark (to be confirmed in April at a visit to the doctor).  

Speech continues to be an area we are focusing on ~ at this point, Nora can audibly say “hi”, and she sometimes (if she feels like cooperating) will try to repeat sounds.  Despite these delays, she has no issues communicating as it is typically pretty clear to understand what she wants and needs.  We are doing some simple sign language with her as well (and a speech therapist comes to our house once every two weeks).  

Our biggest challenge continues to be sleep … which does not have one single thing to do with her “minor correctable special need”!  Nora was having some tummy issues which we seem to have resolved which has improved sleep (we are in a much better place than we were months ago).  Now, it seems the sleep struggle has been related to pure adoption issues.  Some would advise that we should start sleep training her, but parenting her is so different than parenting the other kiddos.  Adoption is a complex and amazing thing.

Relating to Nora's cleft, we do not see the cleft team and her surgeon again until this summer.  She will likely need a couple of follow-up surgeries but nothing more within the year.  For now, we continue to love on and further learn how to parent this sweet little thang, and she continues to absorb and learn!  She is even learning how to drive her Mama crazy with her funny faces ... courtesy of her big sister!

Milestone {The Sippy Cup}

Nothing much to say 'cept hallelujah,

the girl has conquered the sippy cup!

No-no's No More!

Today was a big day for Miss Nora as we ventured down to Children's for her post-op.  The most exciting part of the visit - restrictions are lifted!  No more no-no's and no more taping her lip!

At the start of her appointment, no-no's are still on as is tape!  

And, yes, she's working it ~ giving us her sad eyes and face!

Photos on this post are from my phone so not the best, but you get the idea.  It is truly remarkable what our surgeon did for Nora (yes, I still miss her clefty smile, but I realize that this is what is necessary for her).  All looked well with Nora's healing.  Her palate was very wide before, and our surgeon did "warn" us before surgery that closing it completely in one surgery might not be possible.  After surgery he was fairly optimistic but did tell us that he really had to stretch everything tight.  He noticed today that she does have a very small hole in her palate, but we wait and see what that means over the course of the next year.

And, because I know that some of you like talking about nose leakage, we also wait and see on the nose leakage.  Another example of why I'm lovin' our surgeon, he is relaxed about all of this, but he understands the emotional side of it as well giving an example of how we will not have her going to Kindergarten with a leaky nose.  Yes, this is true!

We do have "homework" where we need to massage her scar a few times a day.  You may notice that her lip is pulled up slightly, her scar may temporarily pull it up more in the next few months.  We may also see her scar get more red.  It sounds like her scar will likely change in the next year, perhaps getting worse and then getting better.  Looking at it now though is quite amazing.

 One of her tricks - scrunching her nose on demand

Thank you to everyone who has been encouraging us and praying for us during this time of recovery!  Love you all!

Sportin' a 'Stache and Some Perspective

One week and two days post surgery, and Nora continues to be a trooper.  This past Wednesday she had her lip sutures removed and now has steri-strips on her lip.  Between the "no-no's" and steri-strips, she is a site!  Both of which are part of life until at least the 24th when she goes back to the surgeon for her post-op.  The steri-strips are supposed to stay on for 1-2 days before needing to be replaced.  I think the 2 days was a bit of an exaggeration as replacing them every day doesn't always seem enough!  Replacing steri-strips on an 18-month old is not fun (but, each time we do it, I think of our friends whose daughter has Epidermolysis Bullosa and the dressing changes they have done, I am in awe, my friends, this is nothing compared to what you have done for your daughter!).

Here is Little Miss sporting her steri-strips ... like a little mustache.  This is the cleanest they ever are, right after they are put on!  Needless to say, her "new" nostril is a bit of a leaking machine!

Sleep continues to be a scarce commodity, but we are functioning!  And, our perspective is changing as each day goes by.  I will always miss Nora's clefty smile (or her diva smile as a friend so appropriately described it); however, as the days go by and as Nora is feeling more and more like herself we are seeing her somewhat mischievous and strong-willed personality coming back.  Love it!  And, her face is lighting up when she does smile and giggle.  She has a dimple high on her right cheek that we adore, and it's back!  (Not captured on these photos yet).

A dear friend sent me a note, gently reminding me of the love that will grow for Nora's "new" smile, even as we miss her old smile.  A reminder that this "new" little face is the one we'll take to kindergarten, the one who will get her driver's license, the one who will graduate from high school, the one that Jason will walk down the aisle one day.  As my friend said, "so many good things to look forward to with Nora's fancy, dancy new smile."  Love you, friend!  Thank you for that perspective!

She Continues to Amaze

Nora is doing remarkably well, it is so evident that she is a fighter.  While not completely back to herself (still swollen a bit and obviously still uncomfortable), we are starting to see glimpses of our Nora.  And, we have started to get some lopsided smiles.

We are still, however, mourning the loss of Nora's BIG clefty smile that so beautifully represented her big personality.  I know that I've eluded to this before, but I never would have predicted how my heart would ache missing Nora's cleft.  This may be hard for others to understand, but we miss her as we fell in love with her, as she was created. 

Bittersweet, a word that I perhaps overused to describe so many aspects of our journey with Owen.  And, here it is, surfacing again.  All of the above said, we are so aware of how this surgery and the incredible work of the surgeon is a life changing gift that will change Nora's future, evoking fewer stares, whispers and the like.  I look at Nora's "new" seamless top lip and cannot help but be in awe. 

And, it really goes without saying that her "new" little button nose is quite adorable and quite similar to that of her brothers and sister.  Another bonus, the extra cuddling and comfort she has been wanting from Jason and I has been the best. We are still figuring out some things (namely in the feeding and sleep areas). And, admittedly, I am grateful for coffee these days (with maybe too much creamer).

Tomorrow morning we head back to Milwaukee for Nora's suture removal on her lip (removed shortly following surgery to minimize scarring).  All of the other sutures, inside her lip and mouth, are dissolvable.  Praying that this will be Nora's last time under anesthesia for a while!

Our Little Warrior

Without further ado, here is Miss Nora, our little warrior, post-lip and palate repair.  Angie describes her little one as a warrior, a totally appropriate description for these little ones. 

I hesitated to post a photo because it's really hard for this mama to look at the eyes of her daughter and not see the sparkle that is normally there.  Through this though I am in further awe of this little one that we get the gift of calling daughter, she is a fighter.  And because of her fighting spirit, we were able to come home this afternoon.

So, what will the next couple of weeks bring?  Well, in addition to ensuring that Nora's pain is managed and that she is well-loved on (so thankful that she is attached to us and finding comfort in us which is improving my one-handed typing skills), Nora will have to wear the arm restraints ("no-no's") for the next three weeks or so (for sure until her post-op later this month).  In addition to not being able to suck her beloved thumb (which is already a source of frustration for her), she cannot drink from a bottle so as to not compromise her palate repair (of course, we went cold turkey with the no bottle thing as I did not want to give up any of those precious times with her before surgery).  Nora is allowed to drink from a cup (failed attempt on that tonight) or we can syringe feed her which definitely seems to be the way to go right now.  Nora's lip sutures will be removed next week, the rest of the sutures (in her mouth) are dissolvable, and while I haven't gotten a real good look inside her mouth, it does look a bit like a sewing machine went to work in there (thank you for the heads up on that, Angie).  We will also have to see the ENT for a follow-up as Nora also had ear vents put in (fluid in the ears is quite common in cleft kiddos).  I was only half joking when I asked if they could just go ahead and pierce her ears right away. 

So thankful that this major surgery is behind us and thankful for the surgical team Nora had.  The surgeon we were referred to is wonderful.  And, I must note that one of the Residents assisting him was a young Chinese-American doctor.  Warmed my heart as it was obvious he was smitten with Nora and made extra efforts to see her last night and this morning.   

Thank you for encouraging us and praying for our sweet girl.  We will surely have to take recovery and everything that comes with it one day at a time.  And, we are absolutely looking forward to seeing Nora smile again, rearranged lips and all.

Just Chillin'

In Surgery

We handed Little Miss through the OR doors at approximately 8:15 this morning.  Now, we are just "patiently" waiting.

Some pre-op cuteness (Nora, not us, haha) and a little last minute thumb sucking.