Saturday, June 26, 2010

everyday life and more!

I've decided to go ahead and officially begin posting about our family at Big Crazy Love

I will blog about the WHOLE family there and leave Jackson's website to just post about specifics regarding him.

I hope y'all will continue to follow on both!  Or if you're just following Jackson's Journey, I hope you'll stop over at Big Crazy Love to see how he's doing on a day to day basis!

So over there, you'll see more of this

Jackson helping me cook!

and more of this

Jackson getting his own bib and putting it on to tell me he's ready to eat!
(which by the way, he eats a 10 piece McD's chicken nuggets pack by HIMSELF on soccer night)

and you'll see a little of this!

(His picture which I finally had made into black and white to add to the kids' bathroom wall!)

See you over at Big Crazy Love!

Monday, June 21, 2010

Sunday Snapshot: {Father's Day}

Hey mom, do you remember what today is?  psst, it's Father's Day!

So OFTEN, he gets lost in the shuffle.  (sigh, and as I look at the pictures from this weekend, he was lost, yet, again)

The hot and humid weekend began on Saturday at Jadon's soccer tournament at UCF, which from previous hot and humid soccer tournament weekends we have experienced before, caused me to suffer and stay at home with Sydney and Jackson to shop clean.  Kurt and Jadon left the house at 6:45am.  Jadon's team won 2 and lost 2 which brought us to Sunday-10:00am game, win/lose determines the rest of the day.

That one 10am game kept us at the field until 1:30pm.  We enjoyed a little bit of


and soccer!

The heat is easier to beat because of Kurt who works hard to set up our tents and packs the cooler and bought a few

Frogg Toggs to help us poor lil' fans

to be able to cool off and not feel like

the soccer star!

Because it is HIS day, by the way, and we want him to enjoy Father's Day during the times when the kids act like

THIS!  Thanks to DAD!

And on Dad's Day, he was able to watch




And after he drove the "fun-bus" home  full of sleeping children and their  one-hot-sweaty mama,
we gave Daddy time to shower and rest.  And by then, it was time for his choice of dinner because it is HIS day, after all.

But, Mama had to sweet talk Daddy out of his favorite place to eat!
And even though it is Father's Day, Mama had her children to think about.

So, Daddy in all his sweetness, as usual, thought about the rest of us, on his day and instructed me to bring us here! 

Our local- sit down- Chinese restaurant.

But, we did do some standin' so that we could get these of our Daddy, since it is

Daddy with his lil' girl, Sydney!  She was only 5 days old on his very first Father's Day!
(and if we would have had a digital camera back then, I would have posted some great pictures of that!)

Daddy with his sweet and tenderhearted son, Jadon!

And Daddy with his lil' man, Jackson.  Now, otherwise known as, Action Jackson!

T-rouble with a CAPITAL T just waiting to happen!

And a LOT of LOVE goin' on here!

Jackson showed us that he's  still got it goin' on with the chopsticks!

We enjoyed a great meal of Beef Lo Mein, Mongolian Beef, Pineapple Chicken, Shrimp Lo Mein and Sweet and Sour Shrimp!  And everyone was happy, even Mama, especially since we didn't have to eat at Taco Bell!

We couldn't escape the hugs that Jackson likes to give to everyone!

(Even if strangers still think he's a gal!)

We headed out to the local

to pick up movies that Mama would end up, inevitably, sleeping through!

So, as Daddy, picked out movies for his day, I waited with the troops in the fun-bus, where


was causing the big kids to make such an uproar and leave

our lil' man questioning us crazy Americans!

Thank you, Kurt, for ALL that you do EVERYDAY to make our lives a little bit easier!  God has truly blessed our family with a wonderful, thoughtful, devoted, and loving husband and father! 
We love you!

Happy Father's Day!!!

Ni Hao Y'all

Wednesday, June 16, 2010

God is into the details!

I was very worried today as we were leaving for Shand's.  Even more so this time than I was for Jackson's first audiological evaluation.  Kurt took the day off and we all headed out for the 2 hour drive to Gainesville.

I think I was more concerned this time because of all the confusion with insurance and wording.  Previously I had posted that we were wanting to go back to Shand's at Hampton Oaks because they have a Baha Clinic.  This is the same audiology department that did Jackson's initial hearing tests.  We were needing the Baha Evaluation and the wording on the the insurance referral was "Bone Conduction Hearing Aid Evaluation"...which this was technically not, although they did evaluate his BCHA.

Before we pulled out of McD's parking lot, we prayed for safe travel and that God would work out all of the details that needed to be worked out.

We needed to arrive at 3:10 for his 3:30 appointment.  We arrived at 3:00, completed paperwork and then proceeded to wait until 4:00 to be seen.  At first it seemed as if the appointment was starting to go downhill before it ever got started.  We aren't sure if the audiologist and the student-audiologist (Shands is a teaching hospital) were trying to feel us out for what we knew or what we wanted and it almost seemed as if they were going to talk us out of the softband Baha, just as Jackson's pediatric ENT tried to do.  But...God is into the details!

The audiologist told us all the basics about the Baha and also about the new Oticon that basically does the same thing as the Baha.  After all of that info, I discussed the problems we have already had with Jackson's Oticon classic 380P and the problems that we are having with it now.  I also told her that we were unable to have Jackson tested with this Oticon on and we wanted to be sure that he was getting the gains that he needed in his hearing.  Not a problem.

Jackson and I headed to the testing booth.  He was tested first with his own Oticon on and then was tested with the Baha.  He did so well, but was starting to get tired towards the end of the testing.  It was about 30 minutes of testing.

We headed back into the fitting room, and opened the door to my wonderful husband and the big kids playing a mean game of Go Fish with the JUMBO playing cards.  (The kids were AWESOME, by the way!!!) We spent the next 55 minutes discussing his results, the educational setting, insurance, Early Steps, etc. etc. etc.

Jackson was first tested with his Oticon on when he was fresh and alert.  He tested in the normal range!!!!  Then he was tested with the Baha and tested BETTER than his Oticon...even with being tired and losing focus!

Kurt and I made sure that at the beginning of the evaluation we stated our desire to fit Jackson with Bilateral Bahas.  Our concerns for safety and being able to localize sound, also the data that is coming out with children showing better results with speech perception in noisy environments.  She totally agreed with us and would be requesting insurance to cover bilateral Bahas.

We discussed his testing that would be happening with the school system tomorrow morning and what type of placement would be best for him.  Although she could not come right out and say her opinion, Kurt and I both feel that she was advocating a language based class (our district it is considered half day ~2 1/2 hours) and then getting outside additional services if insurance would cover them.  We also discussed that due to his being in the orphanage and not having had exposure to many things, he is technically delayed in so many areas...if you remember, he wasn't even walking when we first met him.  We really feel at this point that he has needs that need to be addressed in those areas as well.  He is catching up fast, but we know that this will take time.  Do I think that he will be caught up by August, "nope".  We want him to get all that he can get now.  As most parents do, we want what is BEST for Jackson, and there are still just so many concerns.  These details we are leaving up to God.

We finally have a definitive answer as to what is the next step!!!  She and Dr. Antonelli will write everything up and send the request to our insurance to request the bilateral softband Bahas.  And from there we wait on insurance to approve.  More than likely we will be denied numerous times and this will take us months to get through.  One family that is in the same Microtia/Atresia Yahoo Group, just got their Baha approval after 18 months of battling the insurance!  This is why we paid out of pocket for Jackson's Oticon.  We were not able to get him a loaner softband Baha today and had we not had the ability to purchase this Oticon back in April, we would be applying to different places to get a loaner bone conduction aid.  (Which are hard to come by)

We left the office at 5:25 just in time for a huge storm coming through.  We quickly grabbed dinner across the street and started the 2 hour trek home in the storm.  Most of the gas stations were closed because there wasn't any power, so the poor big kids had to wait until we got home!  Alas, we pulled into the driveway, big kids went potty,  got the kids ready for bed and here I am!

Did I mention that we left the diaper bag at home????  Apparently Jackson had removed it from the foyer where all our things were and left it in the middle of our bathroom floor!

God left me 2 diapers in my purse!  I just love my God that is into the details!!

Monday, June 7, 2010

great day~another step closer

After 2 days of phone calls on Thursday and Friday last week (of course), today we received the phone calls we have been waiting for!

Jackson has an approved referral back to the Baha Clinic at Hampton Oaks at Shands for his Baha evaluation.  His appointment is on the 16th, just one week from tomorrow!

We are currently researching the benefits of bilateral Bahas in children with bilateral microtia/atresia.  From what we've read so far, there is a benefit of localization (being able to tell which direction a sound is coming from, which Jackson has none now) and also an increase in speech perception in noisy locations (classrooms!!!our home!!!!!life in general!!)

Our research has also been showing us that the FDA and Medicare has identified the Baha system as a prosthetic device.  Hopefully this will help with getting our insurance to pay for the cost of a system (and possibly 2 Baha systems to wear bilaterally)

Jackson is doing well in his auditory training therapy sessions, but they have ended due to school being out for the summer.  Diane has given us amazing websites to help us continue his therapy.  One of those sites is called "The Listening Room" They have many great highchair activites, songs, and games all organized according to stages of development.

Jackson has begun using "mama" more appropriately in the past few days!  Tonight it was a joy to hold him and rock him while he was looking up at me continually saying "mama", "mama", "mmmm" "mama" and then he would start to giggle!  And his giggle, by the way, is contagious.

We know that his speech development will be slow.  Please pray that we continue to find joy in the small accomplishments he has!

School is officially out for students tomorrow and then I have two days left of work.  My plan is to get our family blog up and running.  I haven't decided yet if I will continue Jackson's blog about his continual journey with microtia or if I will leave it as is and just post about everything on the family blog.  My original intention was to have Jackson's blog just about our adoption process and travel.  But then it became such a great way to update family and friends about his progress.  So...there arrives the thought of our family blog. 

Any thoughts, my bloggy friends?  Do you prefer blogs that have everything all mixed together or separate family from the journey?  I'd love to hear what you think!

Calling it a night!