Where we are this week...

Due to computer trouble, I am writing Monday's post on Tuesday.

We are still undergoing the appeal's process with our insurance company. I am working everyday to acquire all the letters and documentation necessary to provide to our insurance company. This means waiting on others to do their part, which can be difficult at times. Please continue to pray for this appeal. I was told by a friend of ours that there is a potential we would have to go through this process for each and every laser treatment Judah receives. Of course, we hope that will not be the case.

Please pray that:

• all the documentation and letters needed for the appeal will come this week.
• I will be able to send our appeal to the ins. company by early next week.
• God will put our case into the hands of compassionate, knowledgable personnel who will expedite our case and overturn the initial denial.
• we will receive full coverage for all of Judah's laser treatments rather than just one at a time.

I posted the good news about Judah's MRI results on the Sturge Weber Yahoo usergroup that Lawrence and I belong to. We've already received a personal email from a family with a 5 week old boy who has been diagnosed with SWS. She wrote to hear more about our story and to connect with someone down the road.

Please pray that:

• we will be a faithful witness to the mercy and goodness of God not only as it has been seen in Judah's Sturge Weber, but in our lives as believers in Christ as well.
• we will be used by God to bring encouragement, hope, information, resources, and whatever else the Lord would enable us to give to others in our Sturge Weber family.

As always (but the sentiment only grows stonger), THANK YOU for praying. As others may inquire about Judah, be sure to tell them about this site. We are grateful for this modem of communicating with so many at once as we are simply too limited to call or speak with everyone who so wonderfully and lovingly cares for Judah and our family!

Judah's MRI results

I love the Lord, for he heard my voice; he heard my cry for mercy. Psalm 116:1

For He has not despised or disdained the suffering of the afflicted one; He has not hidden His face from him but has listened to his cry for help. Psalm 22: 24

We received an email from Judah's neurologist indicating that the MRI showed NO evidence of Sturge Weber brain involvement. This is remarkable given the "odds", but we know that God is not bound by statistics! There is still the possibility that brain involvement could be there and just not have shown up on this early scanning. Judah will most likely undergo further brain imaging in the future to further confirm this early indication that his brain seems unaffected by the Sturge Weber Syndrome. But for today, we are rejoicing and giving thanks to our Heavenly Father who loves to give good gifts to His children.

Additionally, for those of you who were praying for Judah's recovery after the MRI last weekend, he is doing much better. We gave him Nebulizer treatments through Sunday and then his breathing started sounding more normal. No ER visits, no steroids, not even a call to our pediatrician this time!!!

Thank you for your ongoing prayers. Please rejoice with us for this good news and give thanks to the One who is "full of compassion and protects the simplehearted." Ps. 116:5,6

Not to us, O LORD, not to us but to your name be the glory, because of your love and faithfulness. Ps. 115:1

Judah's MRI

Judah did have the MRI today, despite his stuffy nose. He was in the "tube" for more than an hour and under anesthesia for close to two hours. He came out of anesthesia rather well, but the stuffy nose has presented a little bit of a concern. He had to have a "trache" (sp?) tube put into his airway to help his breathing while under anasthesia. That irritated things in his airway, and he's sounding a little distressed in his breathing. Most would probably think he's just a little congested, but a little congestion has turned into trips to the ER within a couple hours with Judah in the past. I'm adminstering nebulizer treatments and giving him over the counter cold medicine, but please pray that the congestion will clear itself quickly without any further medical intervention.

We did not receive any feedback today as to the results of the MRI, but were told that we should hear a preliminary report by Monday, God willing. And, by the end of next week, hopefully we'll hear further details as to the results of the MRI and their implications.

Thanks for all your prayers!

Judah's MRI: Friday, Sept. 16th

An update on the insurance coverage for Judah's laser treatments:
We have a wonderful dermatologist at Hopkins! He and personnel from his office are doing all that they can to ensure coverage for Judah's laser treatments. Nevertheless, it is ultimately up to our insurance company. We are currently undergoing an appeals process and pray that we'll be able to resume Judah's treatments promptly.

Judah is scheduled to have an MRI of his brain this Friday, September 16th. This will be the first MRI he's had done, and it will require sedation for an hour or a little longer. The results of this test will indicate whether there is brain involvement with Judah's Sturge Weber which could mean a number of things: seizures, strokes, developmental delays, or learning difficulties among the most common. It could also miracuously indicate that there is no brain involvement, which of course we are praying for.

Please pray that:

• Judah will be healthy for the MRI on Friday. (He woke up with a cold this morning.)
• Judah will fare well with anasthesia.
• We will get a child/parent friendly anasthesia team on Friday as well as skilled technicians who will be doing the MRI.
• The MRI will indicate no brain involvement.
• We will give thanks and acknowledge God's goodness and mercy to us no matter what the results are of the MRI.
• Our appeal with the insurance company for Judah's laser treatments will go through quickly and have a positive outcome.
• There will be no further insurance complications re: Judah's care.

I know many of you pray for Judah and for us as we have these tests and treatments. And, we know many of you will want to hear about the results of the MRI. Thank you. We may not get the complete results of the MRI on Friday, but we'll be sure to communicate them to you as soon as we ourselves find out!

Insurance Woes

Judah was scheduled to have a laser treatment today, but we received a call yesterday informing us that our insurance company would not cover the treatment. Sparing you the many and conflicting details, I'm simply going to make a request to all who read this blog to pray for a few things for us.

Please pray that:

• We will patiently wait on the Lord, trusting that He is allowing these complications for our good and His glory.
• The Lord would graciously lead us to helpful and accurately informed customer representatives with our insurance company, the hospital and others who will need to be involved to sort this out.
• We will not be held responsible for the four laser treatments Judah has already had that were billed inappropriately.
• Provision would be made quickly for Judah's laser treatments to continue.
• God would show us if we are to involve our time, energy and resources in taking action at a state level to see legislation passed for guaranteed coverage for others in the future.

We welcome any encouragement and practical help along with your prayers. We are grateful to you, and we are persevering in our trust in God.

Laser Treatment

Judah will have a laser treatment this Friday, September 9th, at 3:00 p.m. His face will be treated this time.
Please pray that:

• I will be able to apply the numbing cream adequately
• Judah will leave the numbing cream on his face alone
• The treatment would go quickly, painlessly and effectively
• We won't get stuck in terrible Friday rush hour traffic

Thanks!!!