Many Mercies, Much Grace

We took Judah to his EUA despite the bad weather that rolled through our area Friday morning. The most stressful part of our day was the trip to the hospital. We left our house a little after 5 a.m., and at that time the roads were still covered with snow falling thick and rapidly. There were no visible lanes on I-95, and we went an average of 20 miles an hour. God gave grace to my husband to drive humbly, and by His mercy we made it safely to the hospital, only about 20 minutes late.

During our pre-op., there was some discussion between me, primarily, the doctor and the anesthesiology team regarding what kind of anesthetic to use on Judah. Sparing you the details of that conversation, it was nevertheless another mark of God's grace to me to not fear man but instead ask and receive the wisdom of God, and then advocate for what I felt was in my son's best interest. In God's mercy, Judah responded the best he ever has to the "anesthestic mix" the team administered.

After the initial exam, the doctor came out to the waiting room and let us know that the pressures in Judah's right eye (the one he had surgery on back in May) looked good, but that the pressures in his left eye were too high and that he wanted to go ahead with surgery. While we did not expect to hear that news, we consented to surgery per the doctor's recommendation.

Almost immediately, more of a habitual response than a thoughtful one, I began to grow anxious. I asked Lawrence if he would pray, and do so right there in the waiting room. By God's grace, Lawrence put off the fear of man and did pray. God mercifully relieved me of the anxiety, and as I looked up from our prayer, I noticed the woman across from us was crying.

Lawrence and I were going to get some breakfast, but as we walked out of the waiting room, I felt the Holy Spirit prompting me to go speak with and seek to comfort that woman. For the first time in all the times I've been to the doctor and the hospital with Judah, I was able, by God's grace, to look outside my own circumstance and see someone else's grief. Not only that, but I was able to courageously seek to minister comfort to that woman. I inquired about her son and shared a bit about Judah; I told her we were Christians and asked if we could pray for her and her son. I trust this was an "initiation" of sorts for me, the beginning of seeing and acting upon the very real ministry opportunities our son's condition affords us.

Mercifully, the surgery went very well per Judah's doctor. Since it was going to be another hour or longer until Judah woke up, Lawrence and I decided to visit a family we knew was in the hospital. Our pastor was checking in with us throughout the morning and asked if we'd consider going to see this family. They are from Kansas but have acquainted themselves with our church while staying here in MD. There is much to tell of their story, but I will seek to be brief. I mention our visit with them only because it was yet another evidence of God's grace and your prayers buoying us, making us strong enough to trust God and care for others in the midst of circumstances that consistently tempt us to be anxious and self-focused. Our visit with this precious family, the Talley's, turned out to be more a blessing to us than to them, I'm sure.

Judah came out of surgery just tired rather than disoriented and irritable as he has in the past. He was back to his normal self by dinner time, which is remarkable given that past experiences with anesthesia have kept him out of it for nearly a full 24 hours. The next morning when the doctor removed the patch from his eye, Judah's eye was already open!! The surgery in May on his other eye kept his eye swollen shut for 3 weeks!

Since Saturday, Judah is doing well. He has had some trouble sleeping, I think because he sleeps on the side where he had surgery. Pressure must build up and cause him some pain or discomfort. Adminstering eye drops is not necessarily fun, especially having to give them to him up to 8 times a day! Overall, though, Judah is recovering well from surgery, and we are aware of the many mercies of God through our circumstance with Judah.

In a very real way, we felt your prayers on our behalf on Friday. We just cannot say thank you enough. You continue to be such a tangible expression of our Heavenly Father's love and care for us. Thank you so much!!

And, miracle upon miracle, we have NO doctors' appointments this week. We are going to try to enjoy the Christmas season and build some memories with our sons centered around the reason we could experience such mercy and grace this last Friday, our Savior, Jesus Christ!

Only Skin Deep

We went to see a new specialist today, an interventional radiologist, Dr. Sally Mitchell. We were referred to her in order to rule out or confirm a related syndrome to Sturge-Weber, Klippel Trenaunay Syndrome. Dr. Mitchell went over Judah's medical history, took some pictures and ordered an MRI scan of his body from the neck down in order to check for possible vascular abnormalities underlying the surface of Judah's skin. This is one instance where it would be a positive thing to say it runs only skin deep! She looked over the MRI of his head from September and gave a good report in terms of there being no vascular abnormalities there. THANK YOU, LORD!

We are going ahead with these tests to help us and any medical personnel involved in Judah's care to best care for him and to help us plan for what we may be facing in the future. If vascular abnormalities exist below the skin, they can potentially cause bleeding issues, uneven growth in his limbs and/or essentially "feed" the port wine stain causing it to swell, effecting circulation among other things. The potential for high blood flow areas exists as well which would be pertinent information to have in case of injury or surgery down the road. We will let you know when we have the MRI scheduled so that you can pray with us. Judah will be put under anesthesia for that, and the test may take a couple hours to complete.

While we make arrangements for the MRI to take place, we anticipate another appointment later this week, Friday, December 9th. Judah will have an EUA (evaluation under anesthesia) to check the pressures in his eyes. If the doctor, Dr. Congdon, feels it is necessary, he will go ahead with surgery in one or both of Judah's eyes to seek to keep Judah's glaucoma under control. We are hoping and praying for a good outcome and that being no need for surgery.

Please pray that:

• Judah will remain healthy to undergo this procedure on Friday.
• Judah will not need surgery in his eyes.
• Judah will fare anesthesia well with no complications during the EUA or afterwards.
• We will continue to be anxious for nothing.

Thanks for your prayers and expressed concern for Judah and our family!

'Tis the Season for.... Appointments!

It seems to always be the 'season' around here, for appointments that is, but I am so grateful we have the means to get such expert help for Judah!

Friday, Dec. 2nd, Judah will see his pediatrician for a pre-op. physical. He has to receive one of these every time he goes under anesthesia just to make sure he's healthy enough to "go under". (This will be the sixth time he's been under anesthesia since his birth.) Typically, my attitude has been that these physicals are just a fomality, but with how frequently he and Tucker have been sick lately, I'm hoping he'll "pass" the physical and be healthy enough to go under anesthesia.

He is going under anesthesia for another EUA for his eyes on Friday, Dec. 9th. This is a routine check with the potential for surgery on one or both eyes depending on what the Dr. finds when he checks Judah's eyes.

Additionally, I am taking Judah to see a new specialist on Monday, Dec. 5th. Our neurologist recommended we see a interventional radiologist, Dr. Sally Mitchell, for some input re: the potential complications of Klippel Trenaunay Syndrome which Judah may have given the involvement of his port wine stain on his limbs.

While taking Judah to many doctors is becoming just a way of life for us, it still can present many ongoing temptations that would be "common to man", the short list being: anxiety, anger and grumbling. Please help me fight these temptations by praying for the Holy Spirit to remind me of God's truth that He is for me and my family and that He works all things together for our good and His glory, and that He'd give grace to do all things without complaining or arguing.

Please pray that:

• Judah will be healthy to undergo anesthesia on Dec. 9th
• Both of Judah's eyes will be fine and not require any further surgery.
• God will give wisdom to Dr. Mitchell re: the related syndrome, KT, that may be affecting Judah as well as the Sturge-Weber.
• I will be thorough and ask good questions of Dr. Mitchell and be able to absorb all the information and recommendations Dr. Mitchell may present to me at our initial consultation on Dec. 5th.
• I will be mindful and faithful with the opportunities these appointments afford us to be ministers of the gospel, particularly at this time of year.

Please thank God with us that:

• Judah is currently healthy (we think...he's running a low grade fever this morning, but nothing alarming yet)
• Judah and Tucker were both healthy over the Thanksgiving holiday, and we were able to make our planned trip to Pennsylvania to spend time w/ Briana's family.
• So many of the specialists we need to see are all at Hopkins, right in our backyard!

With all there is to be thinking about and preparing for this time of the year, we are really grateful for your thoughts and prayers on our behalf!!

Blistered and Bruised

Thank you to all who prayed for us on Friday. I didn't realize how anxious I really was about this last treatment until Friday morning. Mercifully, God provided through my friend, Kate, who came early to the house to help me get the numbing cream on Judah's face. I seem to forget with each treatment that I can't apply the cream by myself. Each time I think I can do it by myself; each time God provides a friend to help me, and I am always grateful.

Once applied, Judah left the cream alone pretty well. We saw Dr. Cohen at 11 a.m., and the treatment itself went quickly, only 4 minutes. Four minutes feels like an eternity, however, when having to hold him down and listen to him scream at the top of his lungs as if being tortured. I resolved to sing to my son to bring him comfort no matter what the doctor might have thought. Ironically, our dermatogist is Jewish, I believe, and I was singing, "Jesus Loves the Little Children" and "The Gospel Song". My first priority is to comfort my son, but I am always mindful of the witnessing opportunities these appointments are as well, thanks to the encouragement of another faithful friend, Karen Coleman.

We (mostly mommy) terribly missed the nurse, Judy, who is no longer with Dr. Cohen, but are asking God and trusting Him to supply someone as comforting and helpful as she was for future treatments. Judah bruised and blistered quite a bit with this treatment, but we're trusting that will mean a greater impact on the swelling and overall appearance of the Port wine stain.

That same afternoon, I made a "sick visit" to our pediatrician for the boys' colds. Judah was having to get nebulizer treatments all last week, and I wanted to check with her to see if she wanted him to go on a steroid again. She prescribed a steroid for him, but different from the one he had been given with his last three asthma "episodes". The steroid she prescribed for him now will not help immediately, but rather over a period of time as I will give it to him daily. It will not be systemic like the other one, but only take the medicine directly to his lungs where he needs it. This steroid will not have the negative side effects like the other one does. We're hoping this will work and keep Judah from having any more asthma attacks. As an aside, Tucker has had diarrhea for four days now as well and has a horrible diaper rash as a result.

This week, we are scheduled for a regular 15 month checkup at the pediatrician. The boys are supposed to be getting shots at this appointment.

Please pray that:

• God would provide a nurse to assist Dr. Cohen who would be as comforting and helpful as Judy, his previous nurse, was.
• God would mercifully and completely heal the boys of all infections, viruses, rashes, etc.
• Our 15 month checkup would go smoothly: the boys would be able to get their shots without any strange reactions to them, all their "stats." would fall within the range of 'normal' (Judah's head circumference, mainly), and God would grace me to reflect His image to our pediatrician and her staff who is now very well acquainted with our family, our circumstances and our trust in God.
• there are lots of our little friends who are also sick with colds, fevers, diarrhea, etc. Please pray for God's protection of these little ones and God's merciful healing to rain down on the babies at Chesapeake. And, pray for the mommies, too. Caring for sick kids is very tiring!

Please thank God with us that:

• Judah was able to have this last laser treatment.
• God always provides friends and family to help with the practical needs we have in caring for the boys.
• God continues to sustain Judah and Tucker through all these illnesses and hardships.

Remaining desperate for the Lord, Briana :)

Laser Treatments Resumed!

This Friday, November 11th, at 11 a.m., Judah will have a laser treatment on his face. He has gone a couple of months without a treatment, and I recently found out that the laser nurse, Judy, who we absolutely adore and who makes our visits as happy as possible, is no longer working at the clinic. I am very disappointed about this, but must choose to trust God even in these small details. He is Sovereign, and He is good.

Please pray that:

• We will be able to have the entire front of his face and his one ear lasered. (This is more than I think Dr. Cohen is typically comfortable doing on the "little guys". But with the extensive nature of Judah's PWS, I'm hoping he'll make an exception).
• This treatment will have a significant, positive impact on the darkening and swelling I feel is already occurring on Judah's face, particularly his right eye lid and the bridge of his nose.
• The nurse replacing Judy will be as kid friendly and helpful as Judy was.
• I will be able to skillfully and without much interference from Judah apply the numbing cream two hours prior to his treatment.
• Judah will leave the numbing cream alone on his face until he has the treatment.
• Judah would already sense the nearness and goodness of God through these "traumatic events", and that God would use them to draw Judah to Himself.
• God would heal Judah completely.

Thanks for your prayers!

Update

I haven't been good about posting on Monday's; forgive me. I'm thinking it hasn't made much of a difference, though, as I'm unsure just how many people actually keep up with this blog anyway. For those of you who do check, here is the update to Judah's last eye appointment.

Dr. Abrams felt comfortable allowing us to postpone Judah's EUA (evaluation under anesthesia) until December. I will let you know when that's coming up. Also, she said his vision looks good; the prescription remained the same since the last visit which is a good sign. She's pleased that we've been able to patch his eye up to two hours a day and wants us to continue with that.
She doesn't think he needs a lid lift surgery at this time, which is another answer to prayer!!

Overall, the news was all we were hoping to hear. Those are great Dr's visits and always serve to remind me of the lovingkindness of our God, that He hears and answers our prayers.

Also, for those of you who were praying for Judah and Tucker's colds, THANK YOU! Judah did suffer from asthma again with his cold, but God preserved him albeit through several days of steroids and nebulizer treatments. Again and again, we are given opportunities through Judah's health issues to trust God, to be reminded that He is the One who gives us our every breath and His goodness and mercy are following us all the days of our lives.

Thanks to all of you who are walking with us on this journey with Judah!

It's All About the Eyes

This week we are focusing on Judah's eyes (and a cold he and Tucker are both trying to fight).

Tuesday, Judah sees Dr. Abrams, one of his opthamologists, who sees him regularly to check his vision, pressures if she is able, and his visual development overall. At our last visit, she recommended patching Judah's right eye for up to two hours a day. I'm happy to report that we did manage to work up to two hours a day which leaves us with greater confidence that Judah is seeing out of his right eye well!

However, upon a recent visit with Judah's neurologist, Dr. Comi expressed concerns that his eyelid may be covering a portion of his pupil, and perhaps adversely effecting his overall visual development. I will mention this to Dr. Abrams tomorrow at our visit with her, and I wonder if she'll recommend having the eyelid surgically lifted. We are certainly praying that won't be the case.

Additionally, Judah is scheduled to have another EUA (evaluation under anesthesia) to acquire an accurate assessment of his glaucoma status on Friday, November 4th. For a myriad of reasons, Lawrence and I would like to postpone this procedure. We would feel most comfortable doing so if Dr. Abrams also felt there was no reason not to postpone the EUA.

Please pray that:

• Judah and Tucker will recover quickly from their colds without suffering from breathing complications as they have in the past.
• Judah's vision will look good, and we will be able to postpone his EUA.
• Judah will not need a lid lift surgery.

Thanks for praying! I may post again this week to let you know what was determined at our visit with Dr. Abrams.

Appeals Are Worth It

I just received a phone call today that our appeal was granted, the denial to cover Judah's laser treatments overturned. THANK YOU, LORD!!!

Our insurance company will cover treatments through to the end of the year, and we'll have to re-submit our request next year if we remain with our current provider. We are unsure about what the future holds regarding our health coverage as Lawrence's employer is currently looking through other packages from different insurance companies with the probable intention of switching. Needless to say, switching insurance companies every year can become quite a logistical nightmare; although, the decision to do so is somewhat out of our hands.

Please thank God with us that:

• our insurance company will cover Judah's laser treatments through the end of the year.
• we were able to schedule two more laser treatments for Judah before the end of 2005.

Please pray that:

• Lawrence's employer will choose a health insurance provider whose plans will carry all of Judah's doctors and medical care through Hopkins.
• we will find insurance coverage that will be affordable (that really would be an act of God! :)
• we will have full insurance coverage for future laser treatments in addition to any and all the medical intervention Judah will require.

Thanks!

Beautiful Brain

Last Wednesday Judah and I met with his neurologist, Dr. Comi. Our visit went very well, and Dr. Comi was very pleased with her assessment of his development. It brought such joy to my heart as I told her about all the developmental milestones he's hit. I was very aware of God's mercy and kindness on Judah's life and little body. I also had the opportunity to actually see the MRI scans which were taken in September. All I kept thinking as I saw image after image was, "What a beautiful brain. Thank you, Lord, for his beautiful brain." There was no indication of calcification or atrophy; it was just a 'perfect', little brain. Actually, not such a little brain.

While very pleased and optimistic about what the MRI scans showed and what Judah's ongoing development indicates, Dr. Comi did raise a few other concerns. One of those concerns regards the large size of Judah's head. His head circumference is within 3 cm. of an average adult size head. More concerning was the fact that on Judah's growth curve, it looked like his head circumference continued to climb rather than level off like other children his age. Upon plotting his 12 month check up head circumference stats. however, we were relieved to see that his H.C. did appear to level off. I am to measure his head every week or so and report my findings to Dr. Comi if Judah's head continues to grow.

There are some other concerns regarding the potential significant impact of Judah's port-wine stain and whether deeper vascular abnormalities exist. She is referring us to a pediatric radiologist for further input and possibly more scans.

Thank God with us that:

• Judah currently shows no evidence of brain involvement with his SWS.
• We have a wonderful neurologist in Dr. Comi. She is incredibly thorough, informative, patient and compassionate.

Please pray that:

• Judah's head circumference will not grow anymore.
• We'll hear soon re: insurance coverage for Judah's laser treatments and that they'll be fully covered.
• We will be able to schedule a consultation with the pediatric radiologist within a reasonable amount of time.

There are some additional appointments and concerns coming up, and I will be posting as regularly as I can on Monday's. We appreciate all who faithfully check this site and pray on our behalf. I don't know how to explain it, but we always feel your prayers, and it buoys our faith and confidence in God's protection and provision for us as we walk through this with Judah.

Forgot to Post

Tomorrow, Wednesday, I will take Judah and Tucker with me to Hopkins to meet with Judah's neurologist, Dr. Comi, in order to go over the MRI results face to face with her.

Please pray that:

• Lawrence and I will have wisdom to know what to ask of Dr. Comi re: Judah's MRI and its implications.
• Our visit with Dr. Comi would be as comprehensive as we can make it since trips to Hopkins, though in our 'backyard', are not easy to do with the boys being so young.
• The boys would be cooperative and as easy to manage as 14 month olds can be so as to not cut our visit with Dr. Comi short.
• There would be a good report to share with you after our visit.
• We would continue to be faithful witnesses to the goodness and mercy of God on our lives and Judah's life.

I will try to post an entry by the week's end re: our time with Dr. Comi on Wednesday.

God Continues to Answer

I asked for ya'll to pray that all the documentation needed would arrive to me by late last week. Friday, I received the last letter I needed to send in our appeal for Judah's laser treatments. I had a friend who works in medical billing look over the letter I wrote and all the documentation I had acquired. (Thank you, Michele Belzner!) She gave me a few additional things to include in my letter and prayed with me for the denial to be overturned.

Today, I will work on those finishing touches to my letter, and God willing, I will be sending out the entire appeal tomorrow.

Please pray that:

• our appeal will be reviewed promptly and by medical professionals who will see clearly the medical necessity of these laser treatments.
• our appeal will secure full coverage for all of Judah's laser treatments, which could be quite a few over the course of several years.

Thank God with us that:

• we are seeing God hear and answer our prayers, both great and small.
• we see the parts of Christ's body within our church and beyond who seek to serve and use their gifts for the edification of the entire church.

We wait in prayerful anticipation of God's mercy and goodness on Judah's behalf.

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!!!

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!

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!

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.

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

This Week in Our World

For our faithful prayer warriors, let me inform you of our appointments this week.

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.

Conference Concluded

Thank you to all who prayed for us while we were away in Hershey, PA, for the Sturge Weber Conference. Our travels were uneventful, and the boys spent some great quality time with my parents. Tucker learned how to stand up on his own without assistance and is now walking more than ever! Way to go, Tucker!!!

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

Posting on Mondays

I was thinking about how to make it easier for people to know when there's been a post made to Judah's News. So, I decided I would post on Monday's. I may not post every Monday, but I'll only post on Monday's. Hope that makes sense. Gotta run. Judah's about to ruin some tapes! :)

Sturge Weber Conference

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.

My friend, De, and Judah's EUA results

My friend, De Neumann, went with me today to Judah's EUA (evaluation under anasthesia). She has gone with me to Hopkins on a number of occasions, and she is a great person to have with me. She helps me keep God's perspective on our circumstances, doesn't ever allow me to slip into self pity or self absorption, and is always full of faith for what our mighty, merciful God wants to do and can do in our lives and through our circumstances. Thank you, De! And, thank you, Lord, for putting such wonderful, godly people in our lives to help us carry this burden. It often doesn't feel like a burden but a blessing because of the people You, Lord, have surrounded us with.

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. -----?"
Me: "Yes."
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!

The Next EUA

Judah's eye is looking better but is still not opening all the way. He is scheduled to have another EUA (evaluation under anasthesia) on JULY 8th. The Dr. will check the pressures to see if the last surgeries have had their desired effect. The Dr. just emailed me to let me know that if the pressures are elevated during that EUA on the 8th, he will want to go ahead with another surgical procedure at that time so as to minimize the number of times Judah is under anasthesia. He did not provide further details but said we'd discuss it on the 8th when we come to have the EUA done.

Please pray for:

• complete healing of Judah's right eye before the EUA on July 8th
• wisdom for Lawrence and me re: another surgery if Judah's pressures are high upon evaluation
• perseverance in prayer to be anxious for nothing

Continue to thank God with us that:

• Judah continues to develop and grow at a normal pace
• we have good health insurance (expensive, but good) that covers all but a small co-pay for all these procedures, Dr's visits and prescriptions
• His Word takes greater hold in our hearts as we are forced to cast our burdens at His feet and trust Him with our son's care.

Judah's first eye surgery

Judah had eye surgery on May 20th. It was done to help control the pressures in his eyes so that glaucoma will not eventually take his vision. The two procedures performed are called a tribechulotomy and a tribechulectomy (not sure about the spelling..sorry!). He was under anasthesia for nearly three hours. Even though it took a full day until he was himself again, he did well coming out of anasthesia.

As a result of the surgery, his right eye (the one worked on) was swollen shut for about a week. The swelling has gone down significantly, and the eye itself looks free of infection, for which we are very grateful. However, he still isn't opening his eye completely. It's opened less than half way. We have been reassured several times by the doctor that this is within the realm of normal as far as recovery goes for this surgery, and that it should not affect his long term vision.

Nevertheless, we are finding ourselves anxious at times about his vision getting worse with the length of time that has gone by without him really using that eye. Before the surgery, this eye was found to be more near sighted and we had been patching the other "good" eye for an hour a day to try to strengthen the "bad" eye.

Please pray:

• Judah would open his right eye soon
• Judah's vision would not be adversely affected by this or subsequent surgeries he may need
• Lawrence and I would be anxious for nothing (Phil 4:6) but trust God, who in all things works for our good (Rom. 8:28)
• Lawrence and I would have wisdom and grace to shepherd Judah and Tucker's heart even at this young age to be confident in God's goodness and mercy to them no matter what the outcome of Judah's lot.

Thank the Lord with us:

• Judah has continued to be seizure free (seizures & strokes are an expected norm. for many with Sturge Weber)
• Judah does well under anasthesia (he will need to be "under" for all his eye exams for a while)
• Judah is managing well with the use of just one eye!
• The eye that is healing has shown no signs of infection.
  

Purpose for this Blog

This blog has been established to keep those interested abreast to Judah's medical condition. I will include dates of doctor's visits (feel free to call about babysitting Tucker or joining Judah and me at Hopkins), prayer requests, and praises. Eventually, I would like to establish a web page for Judah, including pictures and links to other sites, but this is what I have to work with right now.
I will be sure to let you know when/if a more official web page ever gets set up.

Please visit the sites listed to the right for more information about Sturge Weber and Port Wine Stains. Also, feel free to email or call us any time if you have any questions this site doesn't cover or if you just want to chat. We love you all and are so amazed that God cares for us so much to provide such generous, loving people like you! Thank you!!