Family Vacation 2013

I could write a novel on how well our Lake Texoma family vacation went this past week.  After a week of doctors appointments, we were more than ready for some family fun (although 

Scott had to work a few days).  Speaking of doctor appointments, Emma saw the dentist, pulmonologist, pediatrician, and cardiologist week before last.  All of her appointments went well.  Here is a brief overview:

Dentist: Emma's teeth look great and her last molar is still taking its precious time to come thru the gum.

Pulmonologist: Emma is doing well with her current medications to help with reactive airway disease.  The doctor prepared us that the winter would be the worse time for her.

Pediatrician: Emma's reflux meds did not seem to be working properly, so we have changed meds and so far she is doing much better on the new medication.

Cardiologist: drum roll........Emma gained 1.5 pounds in the past month on her new calorie regimen...YAY!   Emma's echo and EKG looked stable which is great.

Orthopedic: Update on scoliosis appointment: We loved her new doctor.  She was very understanding and is going to watch Emma for a couple of months and get a new x-ray.  In the meantime, we are going to work on Emma's core strength in hopes we can avoid the brace.  The good news is that Emma does not have any spinal bone malformations which is helpful in scoliosis management.

Now to the fun stuff. . . . . . .

We took a week's vacation to Lake Texoma this past week that concluded in the annual Jamar Reunion.  Last year Emma did not do well at the lake, so we did not have extremely high expectations for this year; however, Emma did great.  We went fishing, tubing, skiiing, boat riding, swimming, and did a lot of eating and relaxing.  But, instead of spending copious amounts of time writing about our trip, I will let the pictures speak for themselves.   

Emma getting comfy in the RV (notice the jacket..it was chilly)

Enjoying the sunshine!

Mr. Rhett

My 4lb 4 oz fish

Beautiful sunrise over the lake

Eating corn on the cob for the first time

My smiling cutie

Jamar reunion BINGO

Helping Daddy drive in the park

She loved Cinnamon

Little Glasses 

Skiing Fun

Caleb

Scott Wakeboarding 

My dad can still ski like a pro

Randi wake boarding

Emma and Cousin Coen riding on the boat

My beautiful boat baby

Taran and Coen 

Our annual tubing time

Seven people on the tube...no biggie

Papa and MawMaw

My sweet sister-in-law

Sassy and Stylin

Fun at Kids Day

Coen

Daddy and his Princess

Jake and Rhett

10 people and 3 tubes = Crazy Fun

Love my family

Visiting with Great Grandma

Gramma and Grampa cleaning fish

Hanging out with Cousin Austin

It did our hearts good to see Emma enjoying the lake and her family.  Emma truly blossomed on this trip and showed us a side of her we really had not seen when she was around a lot of people.  God provided amazing weather and it rejuvenated our little family.

We appreciate the prayers and support as we continue encourage Emma's development, tend to her medical needs, and do our best to give her fun life opportunities.

As always, God is good!  All the time!  God is Good!

My Incredibly Shrinking Girl?

Emma has really been showing us some “big” improvements in her development lately.  It has been so much fun watching her get so excited about her new accomplishments.  Her progress has been extremely evident in her communication skills.  Emma is signing several new words and making choices via cards and communication i-Pad apps.  She is getting quite demanding now….which has led to the game: who has the strongest will ;)  

Emma is working hard in Occupational Therapy to become confident in water play.  Some days are good…some days are so hard, but we continue to push her to get out of her comfort zone and conquer this fear.  Our goal is to have her enjoy the big pool and splash pad by the end of the summer.

We are seeing Emma’s leg muscles getting stronger.  We are now able to unbuckle her in her stander and she is able to maintain her upright position for up to 30 mins.

 

Now that you have a brief update on her therapy regimen,  I will try to update you on her medical status.

Emma has been without her scoliosis brace for about a month now.  I won’t get into all of the details, but we had a fall out with Emma’s current orthopedic specialist after a misdiagnosis.  Emma had significant swelling on an area of her spine that is more-than-likely due to improper brace fitting.  We will be meeting with a new orthopedic specialist on Thursday morning.  We are hoping and praying that this new doctor appreciates our role as parents as well as works hard to find a method to slow down the progression on Emma’s scoliosis.  It has been so sad to watch her posture deteriorate as the month has passed.  We are very anxious about this appointment due to how integral her back status is to her future heart surgeries. 

Another issue that has literally knocked us off our feet has been Emma’s growth and weight gain.  We took Emma to the endocrinologist last week and she has not grown in height or gained weight in 6 months.  You could have literally wiped me off of the floor.  Why?  Because, Emma has been eating like a champ and looks so much longer.  So, after a quick check-up with our cardiologist and nutritionist, it has been decided to try to add calories to the food she is currently eating via DuoCal (a powdered calories additive) in hopes to help her gain weight, which will hopefully encourage her growth.  If we do not see any growth in 3 months, Emma will (more than likely) undergo a series of growth hormone stimulation tests. 

July is fast approaching and with it will come an appointment with the pulmonologist, dentist, and cardiologist. 

We appreciate your prayers as we continue to do our best to get Emma the best medical care possible to ensure that she has the best life possible.

As always, God is Good!  All the time!  God is Good!

Long Overdue Update...You don't Want to Miss the Zoo Pics :)

Hey everyone!  Just thought I would give a little update as to what our sweet girl has been up to lately!

First, Emma recently went to the zoo and had a blast!  She got to see a ton of animals and even got to feed the giraffes.  I wasn’t able to go with Sarah and her mom to take Emma (I was extremely sad about this!!) but Sarah was able to send me some amazing pictures and a video of her feeding the giraffes.  So glad my big girl got to see all of this and have this amazing experience!  Lots of pictures, but I think they tell her experience so well.

Zoo Fun Video

Secondly, we thank God for the improvement we saw on Emma’s last Scottish Rite appointment.  Her lower lumbar scoliosis improved from 35 degrees to 24 degrees just in this short time she has been able to wear the brace.  Sarah and I consider this a huge victory because as one might imagine, this brace is no fun at all for Emma.  But, she has been amazing at tolerating a lot of hours in it.  We will continue to have her wear it and reevaluate in months to come.   Praise God!

Emma in her brace...We don't get many smiles when she has to wear her brace :(

Third, we give praise to God for her improvement in communication skills!  She has recently been doing and amazing job with communicating with Sarah, her therapists, and me with her song cards.  We give God the glory for all that He is doing in her life right now and to come!

Emma also has a new wheelchair.  While she is not maneuvering it herself yet, she is definitely enjoying some rides around the block.  Our hope is that this allows her more independence in her movement.  

Emma's Power-Wheels Video

Emma's cardiology appointment went well.  Her labs looked good and we are continuing to watch a collateral vein that has formed and is "stealing blood".  At some point, this will send Emma to the Cath Lab, but we are holding off for now because her oxygen levels are "good" for her and her heart function remains stable.

As always, God is good, all the time.  And all the time, God is good!

Scott (Daddy)