Sunny Days

I know, I know, it's been ages since I last posted!  Is anyone still out there?  Oh, hi Mom!  Life has been slow, and busy, and full, and beautiful, and crazy, and calm.  The days drift by and I think to myself, "Tomorrow, maybe tomorrow I'll post something."  But I've been stuck and distracted by so many things in life.  I think that maybe I'm back now.

My little Nathan.  He's got my heart.  He's also been the cause of a lot of concern these last few weeks.  A visit to the geneticist several weeks ago brought a new diagnosis for our little guy.  Last summer when he saw his eye doctor, we were told that he has something called Duane's Syndrome.  He is missing a muscle at the side of his right eye, but it turns out it's not that big of a deal and hopefully will not cause him any problems.  Along with Duane's Syndrome, the doctor told us that he believed Nathan has Goldenhar's Syndrome.  This syndrome causes genetic abnormalities of the eye, ear and spine.  We already knew about the eye and ear abnormalities, and at the genetics appointment, after it was confirmed that he does have Goldenhar's, we learned that he may have something going on with his spine as well.  We are waiting to see a neurosurgeon to get their thoughts about if he needs an MRI of his spine (the geneticist says yes but a radiologist was concerned about putting him under anesthesia when there is only a mild suspicion of something from his spine x-ray).  So we'll see what will happen with that.  Honestly, the further out that we get from this diagnosis the less upsetting it is for me.  At first I was very worried, not knowing what he was going to face.  Now we still need to learn more about his spine but it is not a pressing, everyday worry for me.  We will take things as they come with our wonderful little man :)  

More concerning for us recently is an infection that has caused one of Nathan's tonsils to be very enlarged.  He had strep throat (we all did, that was super fun) and is on his second round of antibiotics.  He stopped eating and was sooooooo crabby.  We saw the pediatrician, who told us as soon as she saw his tonsil that he needed to see the ENT.  We saw the ENT, who told us it is most likely an infection but that one tonsil can be a sign of something more, such as cancer.  He did not seem to think it was, and told us to wait a month and that if it was still large he would take it out then.  This was reassuring to me as I really thought if he was worried about it he would have been more proactive.  Still, it's hard to hear the word "lymphoma" from a doctor about your child and not worry.  We are praying he can kick this infection so that he doesn't have to have his tonsils out.

This little chicky...she is such a joy!  But lately she has been such a little terror!  Oh, the meltdowns.  Over everything.  It has been exhausting.  I finally realized her trigger - not really listening to her.  If she comes to me for something, I can't put her off.  I can't say "Just a minute".  I have to stop what I'm doing, get down and look her in the eye and talk to her.  If I explain what I'm doing and when I'll be able to help her, most of the time she is okay.  Sometimes she still loses it, especially when she's tired, but for the most part she's a much more pleasant little girl these days!

Our biggest little guy has been sick, too.  For months he has had fluid in his ears and at an appointment with his ENT a few weeks ago it was determined that he should have another set of ear tubes and also that his adenoids had grown back.  Weird!  So he will be having those out (again) soon.  He is scheduled for surgery on Tuesday but he is still sick so I'll be taking him to the pediatrician tomorrow to see if he's still got strep throat or if he is well enough for surgery.  Never a dull moment!

The last week has been glorious as the weather is FINALLY warm!  We are spending many hours a day outside, going for walks, playing in the backyard, riding bikes in the driveway, going to the park...it is so great for the kids to be able to get their energy out at last!  They are falling into bed exhausted.  What a beautiful thing!  I find myself pretty exhausted by the end of the day, too, but I kind of like it that way.  Life is hard and busy but so satisfying.  I watch the kids playing and running around laughing together and I just smile at how lucky I am to be their mom.  I wouldn't trade my life for anything!

March

Life sure has been crazy lately!  It feels like we are rarely home these days and when we are there is just so much to do its hard to remember to sit down and blog.  March has been extra busy as we have had many doctors appointments for all of us - with the family doc, geneticist, gastroenterologist, ophthamologist, audiologist, ENT...we are making the rounds!  Combine that with speech therapy appointments and playgroups and I think I'll be glad when this month is over.

Little Miss is still doing very well with her new hearing aids.  She loves to wear them!  She is talking up a storm and just when I thought our house couldn't get any louder, Hannah has added her voice to the mix in a big way :)  She is such a character!

The other day, we were out at the store together.  As we stood in line at the checkout, an older couple smiled at Hannah and the gentleman bent down and said a very friendly hello to her.

Do you know what she did?

 

Yep, that.

Sigh.

There's a proud moment as a parent!

Thankfully they just smiled and thought it was funny.

Crazy kids!

We are so thankful to have some warmer days around...we are ready to say good-bye to this snow...

...and HELLO to spring!!!!

Here's to Hearing!

What a great week we have had!  Well, as I typed that I remembered all the tantrums and fighting and general difficult behavior from a couple of little people around here that have driven me to the brink of insanity!  But other than that...a great week!

We were thrilled to go to Hannah's audiology appointment on Thursday so that she could get her new bilateral BAHAs!  This means she now has two hearing aids on a black headband.  From the moment we put it on her head we could tell she loves it!

We went out to eat to celebrate (by the way, I just have to say that Red Robin is the most wonderful, allergy-friendly restaurant to eat at! We can't wait to go back!).  Hannah was so super happy the whole time and she talked non-stop through our meal :)

At one point when she wasn't looking at me I said, "Hannah!" in quite a low voice.  In a busy, loud restaurant, she heard me, turned right to look at me and said with a big smile, "What?!?"  It was an awesome moment!  Her hearing is so much better and she can locate where the sound is coming from now where before she would look around a lot to find where it came from.

Nathan got fitted for a new ear mold for one hearing aid as well and then there will hopefully not be any more audiology appointments for quite a while!  We are so thankful for our wonderful audiologist who has worked for so long to get Hannah her BAHAs.  What a great week for our girl and for us!

Little Miss Independant

No matter what it is, she wants to do it by herself.  Don't even think about trying to help her!  You will get a glare like none other.  When she wants to do something, she sticks with it and tries over and over again until she figures it out.  Yesterday she worked on buttons for almost 20 minutes before figuring out how they work!  I'm convinced that her spunky, independent attitude accounts for much of her success and growth this last year.  I am so proud of her and love seeing her learn new things.

This week she started putting her hearing aid on all by herself!  She ends up with some pretty interesting hair at times but I think it is awesome that she wants to do it.  

And since we're talking about awesome, how about this one...Hannah has been discharged from speech therapy!  I must admit I was pretty shocked by this one (and so was her speech therapist!) but over the last several weeks she has completed several different speech assessments.  Hannah did great on all of them and showed that she has caught up to age level in every area!  Crazy.

One more awesome thing...we got a call a couple of weeks ago that we did not expect and thought we might never get.  Our audiologist has been fighting our insurance for Hannah to be able to have bilateral BAHAS (two hearing aids since she has hearing loss on both sides).  Right now she has a loaner from the hospital and it is just one BAHA.  Well, we got the call that they got insurance approval for bilateral!  We are absolutely thrilled and can't wait to see what is ahead for our little girl.  We get her new hearing aids on March 6th.

She's full of spunk, sometimes full of attitude, full of life, full of joy, bursting with energy and talking non-stop all day long.  What an amazing thing to see her blossom like this!

We're Still Here!

Yes, we are still here!  I've been stuck as to what to blog about lately.  There's the everyday stuff, which seems like the same thing over and over again (I joked with my sister the other day that I sometimes feel like I'm living the movie, "Groundhog Day" because each day is so much of the same!).  You know, snow, cold, feeding children, discipline, speech therapy, reading to little ones, cleaning up messes...so many things I love, but really does anyone want to read about them?!?!

And then there's the bigger stuff...medical issues, decisions, finances, planning, dreaming...and in some ways these things are so close to my heart and difficult that I just can't bring myself to share them yet.  Don't worry, nothing is majorly wrong.  But there are things going on with our kiddos that are challenging and right now I'm finding that I'm battling fear and worry about these things and wrestling through to a place of trusting the Lord with them.  I've also been wrestling, as the kids get older, with how much to share about what is going on with them medically because they have a right to privacy.  So that leaves us here...

With some cute pictures :)

One Year Later

One year ago, we boarded a plane, flew around the world, and spent an amazing two weeks in China!

It was a difficult day for Hannah, but meeting her was one of the best days of my life.  I think back now on that day and it makes me smile and cry.  It's hard to remember how scary and difficult that day was for her.  It's amazing to see pictures of her in my arms for the first time.  It felt so surreal and crazy at the time!

The last year has been incredible.  Without a doubt, Hannah was meant to be in our family.  She is such a perfect fit for all of us, it just astounds me!  To see how she loves her brothers, and how they love her...I can't imagine any of them without each other.  It's strange to look at these pictures and to know that when I took them, I really didn't know the little girl behind those beautiful, dark eyes.  I always wondered what she was like, what she was thinking or feeling...now I don't have to wonder anymore!  She certainly knows how to let us know what she is thinking and feeling these days :)

Sometimes I can't believe that I got to travel to China to meet my daughter.  What an amazing life I have been blessed with!  More adventure than I ever dared to imagine!  Visiting China was so wonderful and I'm so thankful we had the opportunity to see where Hannah was born.  I hope so much that we will be able to visit again in the future.

I am shocked almost every day as we have approached this milestone at how far Hannah has come in just one year.  While in China, we realized Hannah could not stand, pull up, crawl, or even push herself into a sitting position on her own.  She struggled to roll over.  Look at her teeny, tiny arms!  She weighed just over 17lbs and was a tiny little peanut wearing 9 month old clothing (she was 18-months-old at the time).

Just look at her a year later!  She is so strong, has an awesome belly, can run, climb, jump, ride a tricycle, and keep up with her two busy brothers.  She eats like a champ and weighs almost 25lbs!  Her speech has come along so well that she is about to be discharged from speech therapy after only about 6 months with a hearing aid!  Seriously, she could not be doing any better.  

I smile and thank God when I hold this little girl.  I thank Him for keeping her safe before we were able to bring her into our family.  I thank Him for how much she has grown and changed and for how healthy she is.  I thank God for taking us across the world, despite our fears about traveling and leaving our other kids and all the unknowns, and for blessing us with this precious little one.  She has brought so much joy to our family and we are so glad she is ours!