Monday, July 25, 2005
Wed, July 27: Opthamology appointment with Dr. Abrams.
I imagine she will assess if there's been any significant changes in Judah's vision and glaucoma status since his surgery in May. She may also provide some input regarding why Judah's eye lid is still half shut and hopefully how to rectify that. I have a feeling she will recommend patching his other eye, which will most likely be traumatic for Judah or at best, bothersome. We will go ahead with patching per her recommendation and will appreciate your prayers for its success!
Friday, July 29: Laser Treatment with Dr. Cohen at Hopkins.
These are never fun, but necessary. You can pray for grace for me to shepherd Judah's heart and bring as much comfort as I can to him as he undergoes these treatments. Pray that they will be very effective at not only lightening the Port Wine Stain but also at stunting the swelling that appears to be worsening on Judah's face in particular.
At the conference we heard from doctors who are leading the way on research for Sturge Weber. We sat through their presentations and were even able to have one on one consultations with two of the docs. We learned that there are over 7,000 rare disorders worldwide (and that's only the ones we know of). Many are not researched and little is known on why they occur or how to treat them. We are very fortunate to have skilled physicians and other academics give their life's work to studying and learning more about Sturge Weber.
With that said, we walked away with the realization that there are more questions than there are answers in regards to Judah's condition. Every case of Sturge Weber is a new case in the sense that there seems to be no repeated pattern for how this syndrome plays out in the individual life of the one with Sturge Weber. I was again reminded that we are fearfully and wonderfully made by a Creator who at times leaves many things a mystery to us. This is very confronting for me and Lawrence alike. Will we choose to trust that our loving, merciful Father works all things together for our good and His glory and to give thanks no matter what the outcome of Judah's Sturge Weber? This is our challenge and what God is calling us to as we live each day with Judah, one day at a time.
Lawrence felt that we had met our "new" family after spending four days with the folks at the conference. We realized that these were the folks who God has called us to walk out life with, in one sense. We have the families to whom we were born; we have our church family, and now we have our SWS family. We don't know how many of these families know the Lord, but we anticipate having the privilege of sharing our lives with some of them, demonstrating the gospel through our care for them and through our response to our life's circumstances. We can begin to dream of all the ways God will use Sturge Weber in our lives for our good, for the good of others and ultimately for His glory! We can only begin, though, because God's ability to redeem all things, even things that are so horrible according to man's standard, is really beyond our imaginations.
Please pray that:
- we will continue to walk in faith, claiming the truths of Scripture
- we will guard our hearts from anxiety over what may be down the road (Phil. 4:6) and guard against anger or bitterness for having been handed this lot, remembering rather that the boundary lines have fallen for us in pleasant places (Ps. 16:5,6)
- we will chose praise (as my friend, Carole, often says), knowing that we have been spared the wrath of God and instead been given every spiritual blessing (Eph. 1:3) and eternal life in Heaven with Christ.
- we will be faithful ambassadors of the gospel to our "new" SWS family (2 Cor. 5:20)
Please thank God with us that:
- there is a Sturge Weber Foundation (only 20 yrs old) that provides resources and a forum for doctors and families to learn more and grow in our collaborative knowledge and experience of this syndrome
- there are medical professionals and others who are willing to give their life's work to learning how to effectively diagnose and treat SWS and its related syndromes
- there are generous organizations, government offices and individuals who are willing to help fund research
Monday, July 18, 2005
On Thursday, July 21, Lawrence and I will be attending a Sturge Weber Conference in Hershey, PA. The conference will give us an opportunity to meet other SWS families, grow more acquainted with the SWS community, and hear from some of the leading professionals researching and treating SWS. Judah and Tucker will join us on Thursday to meet some other families, but will stay with my parents on Friday and Saturday, providing a little more flexibility for Lawrence and I to gain all we can from this conference.
I can't say that I'm thrilled about going to the conference, but I am grateful for this resource. And, I do feel that God has called us to be there this year both to learn and to open ourselves up to the ways He may want to use us in the SWS community.
Please pray that:
- We will grow not only in knowledge but also in wisdom about our son's syndrome in order to effectively serve him now and in the future.
- We will respond with gratefulness for the many mercies we have experienced with Judah, especially as we are confronted with others' experiences who may be much more trying than our own.
- We will respond with faith rather than fear as we may be confronted with all the ways this syndrome may affect Judah's life in the future.
- We will be ambassadors of Christ, faithfully representing our good and merciful God who hears and answers our prayers.
Thank you so much for your faithful prayers and encouragement! We are continually blessed and assured by others' petitions on our behalf.
Friday, July 08, 2005
Judah's EUA went very well today. We were getting the usual speel from the anasthesiologist, and she mentioned the shot that would be given him for the anasthestic. I retorted, "Shot? Last time Judah received gas through a mask. Can we do that instead of giving him a shot?"
Anasthesiologist: "Are you seeing Dr. -----?"
Anas.: "He makes everyone get the shot."
Me: "He allowed Judah to have the gas last time."
Anas.: "That's because you participated in the study and randomly were chosen for the gas last time. Why don't you ask the doctor yourself. He may be more open to giving Judah the gas if you ask him versus me asking him."
Later the doctor came to speak with us. I simply asked if Judah could have the gas rather than the shot. He said, "Sure, that shouldn't be a problem."
The anasthesiologist later thanked me for being persistent for the gas, relaying that the doctor definitely prefers his patients receive the shot, but that she sees how the gas is a lot less traumatizing for parents and kids alike.
I felt the Lord's care for Judah and for me in that moment.
It took a matter of minutes for the doctor to evaluate Judah's eye pressures, and the news was favorable. The last surgery seems to be taking its desired effect in Judah's right eye in regards to keeping his pressures low. And the other eye which has had no intervention is within the range of normal, too. NO NEED FOR SURGERY TODAY!!
The doctor noted that Judah's right eye is still not completely open and suggested I consult with Judah's regular opthamologist about it. He felt that time would improve the eye, but wants to monitor it closely. If it does not improve on its own, Judah may need an additional surgery down the road known as a "lid lift".
Please thank God with us that:
- Judah was able to receive gas rather than a shot today, a lot less traumatizing for him and mommy
- Judah did not need further surgery today
- Judah had no complications with anasthesia
- God has surrounded us with helpful, godly friends who are such a means of encouragement to us
Please continue to pray for:
- Judah's right eye to open completely and vision to be fully restored
- Judah's eye pressures will continue to stay within the range of normal
- Judah will continue seizure free
Thank you to all of you who are praying and praising God with us. When we walked in to register this morning and I told the receptionist that my son's name was Judah, she responded with, "Judah, that's a good, strong name." And, later De reminded me that Judah's name means "praise". I am eager to see all the ways God will strengthen my son for his lot and all the ways we will praise God on behalf of my little man's life!