Monday, September 1, 2014

#BESTSUMMEREVER

With a teacher work week and a full week of school for both me and the kids now complete, summer truly feels over and in the past.  I always love Labor Day weekend though, because the three day weekend provides this great transition.  A time to be in the sun and eat ice cream and remember everything wonderful about summer, while preparing yourself for the long stretch ahead before Thanksgiving. It seems as good a time as any to finally write my summer review or reflection that has been sitting on my to do list for a while! There are posts that are hard to write because there is just too much sadness to tell or too much medicine to try and explain.  And then there are posts like this one that are hard to find the time to write because there is just so much JOY to share!! Our summer was jam packed with family time, travel, healthiness and rest.  We went into it with big plans and great hopes and it truly exceeded our expectations.  And as it is now leaving us, this summer has left us renewed, restored and grounded with new hope and confidence.  It is a summer we desperately needed, thoroughly enjoyed and will never forget.

If you have been following this blog, my sporadic 'non-book posts' throughout 2014 documented a very emotional and important journey in the first half of the year.  The first post I wrote in January called "Living without a Crystal Ball" was probably the saddest post I have written.  I have written posts that are more dramatic in describing bad events but when I read back on that one, it is clear that we were very afraid about Max's future in January of this year.  After a terrible November and December, I was resigned to not even wanting to know about the future because I so feared it was going to be bad.  Then in February, one month later, I wrote a post called "The Audacity of Hope" which really marked a turning point for me personally.  It was at that point that I stopped fearing for Max's future and chose to be hopeful.  But it was also clear that I chose hope against what I felt was rational or logical.  I took a huge leap of faith in believing things could turn around and be better.  It did not happen right away, but by June, things really did seem to be turning around for Max and I wrote a post called 'Making Plans Again' sharing that Al and I had moved from just hoping for things to be better to actually planning on happiness and opportunities for joy.  We made these summer plans that I am not sure we truly believed would all happen but that represented our dreams for what summer could be if Max really was better.  We entered summer having made a complete emotional turn around.  We were exhausted from a hard year but more, we were excited.   And I really believe God honored our hope, our excitement and our leap of faith in making so many awesome plans with a truly phenomenal summer.  We were able to do everything we had planned and everything was as much fun as we had dreamed it to be.  And as I write this, Max has not spent a night in the hospital in over three months.   I re-read my crystal ball post tonight and I felt really sad for myself then and just wish I had known that if I had looked in a crystal ball six months ago, I would have seen so much joy and not the things I had feared.

At some point earlier this year, I started using a hashtag with my photos of #hesbeenfaithful and it came about because one day as I was thinking about everything both babies had been through, the old church song "He's been faithful" popped into my head.  So I went and uploaded it onto my phone and have probably listened to it a hundred times since.  I thought I'd share the lyrics to that song because I really think it is a perfect testimony to what we have been through these past few years and where we are now:

In my moments of fear
Through every pain, every tear
There's a God who's been faithful to me
When my strength was all gone, 
When my heart had no song
Still my God, He was faithful to me
Every word He's promised, is true
What I thought was impossible, I've seen my God do

He's been faithful, faithful to me
Looking back, his love and mercy I see
In my heart I have questioned, even failed to believe,
Yet He's been faithful, faithful to me

When I look back now at the past year, I see how God was faithful to us through all of it.  And I see this summer as just a great gift of love and mercy.  

I will include the wonderful highlights of our summer below in pictures because the faces in those photos can capture our joy better than my words can.  But our summer was filled with relaxing family mornings were Al cooked us big breakfasts, lots and lots of time spent in water, wonderful visitors that made us so happy and four trips full of lifelong memories.  It was packed with family time and adventures that we could all share together.  And it still managed to be very relaxing.  I read ten books.  I got lots of sleep.  I tried out new recipes.  I had a ball playing with my camera and capturing the moments big and small.  By the time it was time for school to start back up, my pants were tight and my heart was full.  It was everything a summer should be!

At the end of last summer I wrote a very happy summer in review focusing on all the good times we had over Summer 2013.  But, I also had to fill up half of that post updating on all the medical things that had occurred over that summer- Max's rejection, his neurological issues and pseudo seizures and Addie's liver problems.  Last summer was a mixture of good and bad.  This year I do not have a lot to write about medically because the babies were very stable over summer.  Max particularly had an amazing summer! 10 weeks without so much as a cold! We had been nervous initially about taking him to Tennessee without a nurse and away from hospitals we know but by the time we left, we were not even worried about him.  He was so smiley and so cheerful and his breathing sounded great.  And he loved his time away. He is so social so having 6 adults to hold him and talk to him and make him smile was the best for him!  After such a great summer, Al and I decided it was time to look into him going to school.  He had been classified as a homebound student and had a teacher come to the house once a week but we knew he would love the stimulation of being in a classroom.  The school was so helpful and within a week of us letting them know we were interested in him starting on the first week of school, they had everything organized.  So Max ended the summer on a real high note, with a backpack ready, a school shirt made and everything in order to join his sissy at school!

Addie actually had more issues than her brother over the summer. She had a lot of ear infections and two cases of tonsillitis but she is extremely tough and we generally only knew she was sick because she wouldn't be able to sleep well over night.  So we did spend a lot of time at the pediatrician's office but I always find there to be something reassuring when your biggest medical concerns are so wonderfully 'normal'.  The biggest drama or disappointment of the summer was our news regarding Addie's hearing.  So I did want to share a little more about that in my summer reflection.

Addie has not made any significant progress with talking in the last year or so.  And while her not talking at 2 seemed more reasonable, we were getting discouraged not to see much more communication at three and a half.  School was awesome for her in terms of her learning how to follow instructions and transition between activities.  We saw big improvements in her physical development and her mastery of things like coloring and building, but very little progress in her communication.  And it is frustrating to be three and not able to explain what you want so it was causing some behavioral issues as well.  We wondered if she was still hearing us because we also were finding her to be less receptive and responsive to us.  It was hard to know if that was related to hearing or to some sort of other more behavioral issue or concern.  Then she temporarily lost a hearing aid and we needed up to date hearing results to order a new one.  Any attempts at behavioral or sound booth testing were failing to give us consistent results and were definitely suggesting she was not hearing much.  Her audiologist really felt that the only way we could know for sure what she was hearing was to do an ABR brain wave test under anesthesia.   It took a while to get one scheduled and then she missed her appointment in June due to tonsillitis so it finally happened in July.

It was a dreadful morning, not so much because of the actual hearing test but because of huge difficulties getting IV access on her to start the anesthesia.  Three hours and more than five sticks later and we called our favorite dialysis nurse to come down and she was able to get her accessed.  Then we waited on the test results.  We knew that day they were not good and that they showed her hearing was no longer measuring as moderate loss but now at profound loss.  We were exhausted from the IV drama and not really clear on what it all meant.  We were not devastated or shocked and in some ways we thought it might actually explain a lot in terms of her not talking.  It started to really seem like a big deal a couple of weeks later after we met with both an ENT and a follow up visit with her audiologist and we really understood that unless Addie's hearing does really improve after putting tubes in, she will not be able to hear what she needs with only hearing aids and would need a cochlear implant, which is a big process both in implementation and training for use.  After meeting with her audiologist one morning in August and realizing that this could end up being a very big deal for Addie, I shared on Facebook about what was going on and about the results we got in July.

Right now Addie is wearing her new stronger power aids well and is scheduled to have tubes put in and her hearing re-tested with them in on September 22nd.  That should tell us what direction we will head in.  We are praying her hearing is better and we can use the power aids and see an improvement in her responding and communication.  We are prepared, though, that we may find out that we will be beginning the process of getting ready for a cochlear implant, which will be a big deal, but which we will do happily if it means we can get Addie hearing and communicating.  We are also scheduled to have some formal 
neuro-developmental testing done in November to try and assess what kind of social and behavioral impacts the past few years have had on Addie's development and to get her in the best therapies for her.  Needless to say, it is going to be a big couple of months for Addie.  We are just so grateful she is so happy and delightful and that none of this is preventing her from experiencing joy and feeling loved.   

And so now summer is over and we begin a new chapter, a new season in our lives.  As a teacher, my life is always divided by the school years rather than the calendar years so September seems like a new year for me.  I always want to start off each year with a positive attitude and enthusiasm for the year ahead.  Last year, I went into the school year all excited that the worst was past and that nothing too bad was going to happen for our family.  And then, of course, that proved to be very wrong by November.  So I started thinking a month ago about how do I want to approach this new year.  And here is what I have come up with:

I have absolutely no idea what this year has in store for us.  There are a lot of exciting things we have planned and are hoping for like both kids being in school and finally making it out to Australia.  But really, I have no idea what challenges could lie ahead.  I do not know if it will be an easier year or not.  But, what I do know with complete certainty are these things:
   -God is bigger than anything we could face this year.
   -There will be an abundance of joy this year.
   -No matter what happens, we will be okay.
   -Nothing can happen that we cannot recover from. 
   -Regardless of what is happening each day, we can continue to have hope for the future.
So my attitude for this year is that while I have no idea if it will be an easy year or a challenging year, I have no doubt that it will be a great year. 

And once I decided that was my attitude for this year, I felt so happy and confident and excited for the year. Because I know that my hope and confidence is not dependent on circumstances.  And therefore nothing can happen that would completely throw us off.  We actually got a chance to test our new approach during the first week of school.  We had been absolutely overjoyed that Max was going to get to start school with Addie this year.  And then on the Friday before he was meant to start on Monday, he got sick with a g tube (feeding tube) infection.  He was not able to go on Monday and ended up needing an antibiotic and to see his doctor. If we had gone into this year saying Max is never going to get sick again and all our plans are going to happen, we could have been really discouraged.  But instead we just counted it as one of the many things that could happen that we did not foresee but that that we would get through just fine.  We knew God was bigger and that Monday was just one day so we did not let ourselves get discouraged and then when he was better and ready to go to school on Friday, we got all excited and celebrated.  

So that is our big plan for the year- to make lots of exciting plans and then to know that whether they happen exactly as we anticipate or not, that God is in control and that everything is going to be okay.  And to soak up every joyful moment and pray through every challenge.  And with that plan, I feel really excited and confident that this is going to be an incredible year.

OUR SUMMER IN PHOTOS:
Summertime is all about water for Addie!  Playing in the sprinklers at home!

Or the fountains at market street!

This summer Addie rode on 7 different carousels in 3 different cities!!!

Twin time together at the Children's Museum

This summer we celebrated Papa and Daddy on Father's Day (and we also enjoyed doing lots of my Pinterest craft projects!!)
For my birthday we went to San Antonio and stayed at the Hill Country Resort.  Addie spent the evening in the lazy river and then at night got to watch Shrek 2 on the lawn!

Travelling to San Antonio also meant Addie's first Bucee's trip!
Essentially the whole reason we picked Sea World was so that Addie could meet Elmo, her hero! The moment did not disappoint!

It thrills Mommy and Daddy to see her so happy!!
We discovered at the Rodeo that Addie LOVES rides so Sea World's kids area was awesome for her!!!
They also had a Splash pad!! It was seriously like Addie's dream place!! All her favorite things!

A few days after we got back from Sea World, we had a special visitor! My dear friend Kaylea from Australia that I had not seen in 5 years (since my wedding!) came to stay with us for four days.  We had an amazing time!! We ate and shopped enough to make up for lost time!
Kaylea got to experience the Children's Museum herself.  Obviously the highlight of her trip!
Max is the most loving and friendly child!  Every new visitor is exciting for him!! 

We beat the Texas heat by checking out all the indoor playgrounds!! Wonderwild was a huge hit!!
Addie got very good at fingerpainting this summer!

After an awful winter, Max was just so happy to be feeling so great!!! 
For Al and I's fifth anniversary we took the kids to the Houston Aquarium for the day!! Addie loved the rides and outdoor activities while Max loved the fish! 
Sea themed carousel was adorable!
Her favorite dropping right Aquarium style with frogs!
First ever time on a ferris wheel.  She is our thrill seeker so naturally loved it!!
The highlight of the aquarium day for Al was the white tiger which he was definitely not expecting to find at an aquarium!!
Happy Fourth of July!! Kids first fireworks experience.  Both really enjoyed watching them!!
Addie loved being escorted to and from the fireworks in her wagon
Fun summer day activities- playing with colored rice on a parachute.  It was all fun and games until we had to get the vacuum out! The colored rice has not made a repeat appearance!
Family beach day in Galveston!! 
Al's plan for keeping Max cool and happy at the beach was to get him nice and wet first and it was very successful! Not sure Max loved his first lazy river experience but he sure appreciated the cool down!


Max has always had an extremely hard time dealing with heat.  He sweats a lot and body temperature can be hard for him to regulate so we were shocked and thrilled to see how much he loved our beach day!
I think he could watch her for hours and not stop smiling.  He worships his sister!

Another indoor strategy to wear out little miss was Pump it Up which she thinks is awesome
The best five days of our summer though was at Blackberry Farm, our whole family vacation in Tennessee

For meals at the resort, the men had to wear suit jackets.  What a treat to see my hubby all dressed up every night!! And Max loved the long dinners (Addie not as much!)

One of the best moments of the summer was seeing Addie on her first horse ride. I don't think we have ever seen her so content and focused as she was then.  Such a special thing to see her experience. 

I got a new camera for Christmas which I have loved and this swing was awesome for the novice photographer in me! I even got this photo made into a canvas for our home!


I think vacation officially agrees with Max!
A treat of our week in Tennessee was a date day for Al and I when we got to go fly fishing.  I was originally dubious but ended up having so much fun!


In late July, Addie and I went and visited our extended family in Oregon.   Had a great time hanging out with everyone and Addie particularly enjoyed Dale and Debra's hammock!
With cousin Karli
From Oregon, we met Nana in San Francisco, California for four days in one of the most special places in the world to us! At the carousel at Fisherman's Wharf
Since it was just girls on this trip, we got to do lots of girly things like high tea and spending an hour in a conservatory of flowers!!

Since Addie got lugged around to lots of eating and shopping, we made sure to make time for lots of playgrounds to enjoy the cooler weather.  Golden Gate Park's street slides were especially fun!
One of my favorite days from our summer there two years ago was when we took Addie to the Golden Gate Bridge 6 weeks after her transplant with my mom and Adam and Jenny!  So it was very special to get to take her back there now. She has come a long way in two years!

Addie also got to go to her first American Girl store!! It's possible Nana and I enjoyed it more than Addie;)
Gerri (left) was the transplant coordinator who totally pulled together all the details for both of their transplants and made it possible.  Lynn (right) was the PA who took amazing care of post kids post transplant.  I love both of these ladies dearly and loved getting to spend a little time with them again!
We got back from California to have a visitor already waiting for us!!! Our dearest friend Glen from Australia is travelling the world and made a special detour in Houston to spend a weekend with us!

We just could not get over how happy and healthy this little guy was all summer!  He doesn't even look like the same kid we spent the last year with!
Last adventure of the summer was a trip to Chicago for Addie and me!! Adam and Jenny gave us tickets for our Christmas present and we were so excited to see Chicago but mainly to spend a weekend with them! Here at Navy Pier!

It's her favorite ride again!!! The dropping ride is clearly a national favorite!
The best part of our weekend in Chicago was watching Adam and Addie together.  She often takes a while to warm up to people and clings to me a lot but she loved her time with her uncle.  It was so sweet to see. 
No better way to see the sights of Chicago than on a ferris wheel!

Adam told my Dad he had no idea there were so many carousels in Chicago!! Leave it to Addie and I to hunt them down!
Day 2 in Chicago was the Lincoln Park Zoo
It wouldn't be a good zoo trip without a Lion King reenactment...
Coolest carousel of the summer goes to the Endangered Species Carousel at the Lincoln Park Zoo- educational and adorable!!

Determined to jam us much into our weekend as possible, we went from the zoo to the beach!!


On our last day, I wanted to go see The Bean statue at Millenium Park because I was convinced it looked like a giant kidney.  My brother is a great host to accommodate my desire to visit the giant kidney!


Millennium Park is also home to the most artistic splash pad I have ever seen! 

All good things must come to an end!!! Ended summer with preparations to get ready for a new school year! Posing in Mommy's classroom while she works!

Max in his classroom on Meet the Teacher night
First Day of School Pictures!