Monday, August 29, 2005

Judah's EEG That Never Was

Judah's EEG and neuro. evaluation was cancelled for the second time. Today, I had to call and cancel because Judah was up about 5 times throughout the night last night. He seems to be fine today and is not presenting any other symptoms, but because Tucker was going to be watched by one of my friends who has a 7 month old of her own, I decided I would keep both the boys home today and try not to spread any potential yucky germs we might be harboring here at the Almengor's.

We celebrated Judah and Tucker's 1st birthday with some friends from church this weekend. It was a wonderfully fun time, and I will try to blog about it on Judah and Tucker's page soon. I'm hoping Judah's sleeplessness was a result of the flurry of people and activity from the weekend.

I will take this opportunity, however, to briefly ask for prayer...again! :) I find myself anxious lately about taking Judah for tests. As I tell people about his tests or treatments that are becoming rather common place for us, I realize there's still quite a measure of anxiety attached to these trips to the doctor. I feel like I should be o.k. with these tests and treatments because we've been doing them for quite a while now, and I have the routine down. But, there's an underlying fear each time we go that something is going to go wrong, or that we'll receive bad news this time. I know that even should something go wrong or we get 'bad' news, God will still be Sovereign and loving us, giving us better than what we deserve. Nevertheless, there is this fear that lingers.

So, with all that, please continue to pray for me and for our entire family. I see that God has already done so much in my heart through this circumstance, but there is still much character to be wrought. I know it will take time, and I'm confident it will be produced largely due to your faithful prayers on our behalf. Thanks so much!

Friday, August 26, 2005

EEG Postponed

Judah's EEG and neuro. evaluation were postponed until this Monday, Aug. 29th at 10:30am. I will try to let you know how things go on Monday. Thanks for praying!

Monday, August 15, 2005

EEG and Neurological Evaluation next Monday

Judah will have an EEG and Neuro. eval. next Monday, Aug. 22nd. He is participating in an ongoing study by Dr. Anne Comi and the SWS center, allowing him to receive free EEG's every 3 months. This is a much less invasive way to try to determine whether or not there is brain involvement with the Sturge Weber. While less invasive and really not painful at all, it is still not Judah's favorite way to spend the afternoon. He often wiggles and cries quite a bit while the technician gets all the electrodes glued to his head.

Also taking place that day will be a neuro. eval. where Dr. Comi will do an overall exam to see if Judah is doing everything he is supposed to be at his age. I'm expecting things to go well; however, I do have one concern. Judah's head continues to grow. He's been off the charts for many months, and at our most recent pediatrician's visit, his head size was even off the curve he had been on for a while. He doesn't seem to be suffering any developmental delays, but this is always a concern. And, obviously, we are wondering when and if his head will stop growing and what sort of implications there will be for his current misproportioned head size.

Please pray:
  • Judah will cooperate for the EEG and they'll gather good information from the test
  • Dr. Comi will be able to relieve some of my fears re: Judah's head size and that his neuro. eval. will indicate normal progress for a boy his age in all regards

Please thank God with us that:

  • we live so close to Hopkins and can participate in studies that will help Judah and other SWS children in the future
  • no matter what the EEG shows or what Dr. Comi concludes from her neuro. eval. that Judah is in God's Hands and that God's plan is to give Judah a hope and a future
  • the boys turned 1 yr. old; we made it their entire first year without Judah suffering any seizures or strokes!

Problem & Providence

Judah's Problem:
Upon a glance at Judah, many might think they see his biggest problem in life looking right back at them--the apparent Port Wine Stain that covers 80% of his face. And, while his PWS & related Sturge Weber Syndrome may present many challenges to Judah over his lifetime, it is not his greatest problem. Judah's greatest problem is everyone's greatest problem. He is a sinner and in need of a Savior.

Left to ourselves, we live as enemies of God, the One who lovingly created us. Because He created us, we are obliged to live in submission to Him and to worship Him. But, we have rebellious hearts that deceive us and lead us to seek independence from God's rule in our lives. In our rebellion, we also seek to worship anything and everything other than God. The Bible calls this sin, and it says not only are we ALL sinners (Romans 3:23), but also that the penalty for sin is death (Romans 6:23)--eternal separation from God and damnation in hell.

Judah's Provision:
We are very grateful Judah was born in the United States & even moreso, a half hour away from a world-reknown hospital where he receives excellent care. We see this as God's merciful provision to Judah. A MUCH GREATER PROVISION has been made to Judah and to all of us, however, for our greatest problem--that is the provision of God's Son, Jesus Christ.

Jesus Christ came to earth, fully God and fully man. He endured all the temptations we face daily and yet was without sin. He always chose to obey His Father. Because He lived life on earth like noone in all of history, perfectly, He was the Only One suitable to make provision for all our sin. How did He do this? By dying on a cross. Jesus endured excruciating physical suffering on the cross, but above that, He incurred the full wrath of God, His Father, on Himself for your sins and mine. He was our substitute, our provision.

However, in order for us to take advantage of what Christ did for us, we must receive by faith Christ's atonement. How do we do this? The bible says, "if you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved." (Romans 10:9)

Judah has not yet received Jesus as his Savior; we trust that one day he will. All the laser treatments for his skin, surgeries and drops to keep his eye sight, scans and tests to see what's taking place in his brain cannot compare to the provision of Jesus Christ to Judah and to you!

If you have any questions regarding what we've communicated here, please email us. We'd love to the opportunity to explain further and to help you know God's greatest provision for our greatest problem.

Monday, August 01, 2005

Eye, Skin and to PA Again

Judah and I met with his opthamologist last Wednesday, and overall we were very pleased with what she had to say. She said Judah's vision is intact and in fact a little better than before the eye surgery in May. His eye lid is still only half open, but she didn't have a good idea as to why. She recommended patching the "better" eye, working up to two hours a day. (We're currently hitting closer to a half hour a day) And, while there was mention of putting Judah in glasses, she feels there is no need to do that right now. Thank you, Lord, for one less thing to worry about! :)

Judah's laser treatment went well; although, he developed some bruising this time on the area treated. It makes his skin look a bit worse than before the treatment, but the bruising will go away with time. And, I'm told it doesn't hurt him. I'm always so grateful for the laser nurse, Judy, who makes our visits just about as pleasant as they can be. I can't imagine anyone doing a better job than she does with the kids.

We're heading to Pennsylvania this weekend for Bri's brother's wedding, our fourth trip "home" this summer. It may be the first time some of Bri's family will meet Judah and Tucker!

Please pray that:
  • Judah will cooperate with the eye patching and that the patching will have its desired effect.

Please thank God with us that:

  • We see such wonderful medical staff who make our frequent visits as pleasant as they can be