disappointed

We learned a week ago that Jackson will NOT be a candidate for the ear canal surgery.
Dr. Roberson said that his facial nerve runs right where he would need to complete the surgery.  If he did perform the surgery, he would run the risk of facial paralysis.
For all of my other bloggy-friends that have children with microtia/atresia, once I hear back from Dr. Roberson, I will let you know what Jackson actually scored on each ear.  I believe that anything less than a 6 Dr. R will not attempt the surgery.
So, you might be asking where we will go from here!
We will have the Medpor reconstruction for his outer ears by Dr. Reinisch.
We have no idea when we will start that process.
On the same day that we received this news, we also found out that Jackson's speech is not as far along as it should be.  Apparently our audiologist at Shands recognized this back in Feb. when Jackson was 3 months into wearing his Baha, but never said anything to us.  She wanted to give him more time.
She is recommending that Jackson have a Velopharyngeal evaluation completed.
She is concerned that the flap is not closing in the back of his throat or that his palate may be too short and that is why he cannot produce the first consonant sounds at onset...m, b, etc.
We are also in the process of trying to get Jackson his 2nd Baha so that he can wear then bilaterally.
We know that God has amazing plans for our little boy!

CT Scan

Today was Jackson's CT Scan.  He did AMAZINGLY well!

The technician didn't want me to give him the Rx to make him sleep.

Kurt was able to get off from work to help rock him to sleep.  He's THE MAN!!!

You Rock!

Jackson was asleep but then woke up just as Kurt was putting him onto the table.

He didn't move a muscle!

I stayed in with him during the scan and I could only see his little eyes move every once in awhile.

Tomorrow after 12:00 we can go pick up the copies of the scan on CDs and mail to Dr. Roberson in California.

We will then wait for him to contact us with the rating score for Jackson's atresia surgery.

We honestly have no expectations for whether or not he is a candidate for the atresia surgery.

This determination will set the course for ear reconstruction surgeries.

Thank you to all of our friends and family that were praying during the CT scan.  Your prayers were felt!

Trusting Him

We have begun the journey for ear reconstruction for Jackson.

It will be a long road.

We have decided to pursue the Medpor method.

We Skyped with Dr. Reinisch in California a couple of weeks ago.

He was very informative and was able to answer our questions and concerns.

Tomorrow Jackson will have the CT scan completed.

Please pray for us. Our pediatrician did not request a sedated CT scan.

We will be giving him a prescription medication from our pediatrician to enable him to be still for the procedure.

Please pray that the medication will enable Jackson to remain completely still so that they can get a perfect, readable scan.

This is just the first step in finding out if his hearing will be able to be restored.

Once the scan is completed, we will mail a copy of the scan to Dr. Roberson in northern California. He is the Doctor that will determine whether or not Jackson is a candidate for atresia surgery. This is the surgery that would make ear canals for him. If he IS a candidate, we would have the ear canal surgery first on one ear and then the outer ear reconstruction using Medpor with Dr. Reinisch. And then 6 months later, we can reconstruct the 2nd ear.

I must confess that it is beginning to get harder noticing the staring at Jackson because of his microtia and the fact that he does not have a right ear. At first it didn't really bother me, but I guess that as each day passes, I know the day is going to come when Jackson notices and is able to tell us that it bothers him.
We don't really know how much he understands about his ears right now.

Please pray that as we begin this journey that everything will go smoothly with our insurance. With each atresia repair, there is a very LARGE amount of money that has to be paid upfront to be reimbursed later. Money that I'm sure very few families have sitting around in their bank account or even available on a credit card.

But, with that said, I know that God will provide every last cent. He did with the adoption. And when we tried figuring it all out on our own, God would always whisper to me, "Trust me."

So, we are beginning this new journey Trusting Him!

Trusting that He has every detail figured out.

Trusting Him that every penny is accounted for.

Trusting Him, once again, in His timing and not our own.

Trusting Him that His Word is Truth.

Trusting in His incredible love for Jackson and the life that He gave to him at the moment of conception.

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future." Jeremiah 29:11