Glasses?

This Friday, March 3rd, Judah will go to have his eyes checked once again. This time, the main focus will be to see if he needs glasses. The possibility of glasses has been brought up in the past, but Judah's opthamologist wanted to wait until his glaucoma was a bit more under control. Since his last EUA showed that his pressures are acceptable, she will go ahead and see what the surgeries and patching have done to his vision.

Her expectation is that Judah's vision will have improved as an indirect result of the surgeries. However, Judah's right eye has always been more nearsighted than his left. If this remains the case, and the discrepancy is vast enough, she will prescribe glasses. If he's equally nearsighted in both eyes, she will give him more time to develop and consider glasses further down the road.

My preference would be for Judah to not need glasses. However, if he needs them, I'm grateful he will be able to have them at such a young age, hopefully to adjust more quickly to them and also to enjoy better sight, too!

Please pray that:

• Judah will cooperate with the exam, and Dr. Abrams, his opthamologist, will acquire an accurate prescription for both of Judah's eyes.
• Judah will not need glasses.
• Judah and Tucker are both sick with a cold; pray they'll heal quickly.

I'll let you know how things go next week.

Most Recent Laser Treatment

Judah had his laser treatment last Friday on his face. It turned out to be more stressful than usual. Thinking it would be more comforting to Judah and Tucker to be together, I foolishly decided to let Tucker tag along with us, accompanied by my friend, Kate. Tucker seems to be displaying a strange phobia of elevators, and at Hopkins, we had to take an elevator at least three times. Our appointment was pushed back an hour, and the waiting room crawled with people, so much so that we hung out in the hallway outside the office.

By the time I reached the treatment room with Judah, I broke down and began to cry. I was tempted to just take Judah home at that point, but knew that would be unfair to him. All I could do was pray for God's help to compose myself as I sensed Judah would feed off of my disquieted spirit. Finally, after I just couldn't seem to pull it together, I said in my spirit, "we rest on Your Faithfulness now, God", and I was reminded of the scripture that says, 'when we are faithless, He is faithful'.

We got through another treatment, with three adults holding Judah in place for the doctor. Even so, there were a few spots the doctor overlapped with the laser due to Judah's wiggling. Judah's face is covered with purple, round bruises on one side of his face predominately and blisters surrounding his nose and mouth mostly. The bruising and blistering is a common result immediately after treatment, and it will go away after about a week or so. Until then, we tend to keep Judah from the public eye, as who knows what sort of comments/stares/assumptions folks might make upon looking at him.

Nevertheless, my little man's smile shines through his bruises and blisters. He is a trooper! I am planning to take Judah and Tucker to our church's bible study tomorrow morning, and I'm praying that the little friends at church will just learn to see Judah and not Judah's red face. I am so grateful that Judah will have the church to grow up in and through which to experience God's love and acceptance.

Pray that Judah's blisters will heal without infection or scarring and that the bruising will go away quickly as well. There are no dr's appointments this week. Yippee! I'll post again next Monday regarding next week's appointment. Thanks for 'staying tuned' and for your faithful praying.

Judah's EUA Results and This Week's Events

As my thoughts turn toward love and the expressions of love we all try to display for others this time of year, I believe faithful prayer on another's behalf has got to rank high on the "most selfless expressions of love" list. So, know that we consider your prayers on our behalf a heart felt expression of love for us, and we are grateful for you!

Though Judah's procedure was delayed quite a while on Friday, he was not difficult to manage by God's grace. We took our friend, De, with us, and she is always a delight to have along for days such as Friday. She keeps a positive, God-centered perspective in all things, has a head full of wisdom that she readily shares and just overall puts a smile on our faces. She is a gem of a friend!

One ongoing concern or preference of mine for these EUA's has been that Judah receive the anesthetic through the gas mask vs. a shot. There has always been a "discussion" prior to the EUA as Judah's doctor prefers (his preference backed up by his study's findings) to use the shot. On Friday, I didn't feel I had it in me to get over what I call the "intimidation factor" of talking through this with the doctors again, so I prayed that God would give me grace and strength.

When the doctor came to speak with us about the procedure, he simply said, "...and we'll use the gas since I know you prefer that and we've already discussed that...". I just said a quiet, "thank you" to God but was ever aware of His presence with us, and of Him fighting the "battles" I didn't have strength to fight for Judah that day.

Judah went under and was evaluated, his pressures found to be within the realm of normal for him. The doctor was satisfied with the numbers enough to not do any surgery that day. However, he does want Judah to begin using an eye drop in his left eye to hopefully bring the pressures down further.

Judah recovered well from anesthesia, and we were home quickly without any complications. Thank you, Lord!!

This week, Judah will have a laser treatment on his face. Gratefully, my friend, Kate, is going to be available to help me apply the numbing cream ahead of time and then watch Tucker at home while I take Judah to Hopkins.

Please pray that:

• Judah will cooperate for the application of his numbing cream.
• God will give me grace and strength for yet another, rather traumatic, treatment.
• I will shepherd my sons' hearts faithfully, to impress upon them that our God is good in all things.
• the dermatologist and his new assistant will effectively treat Judah's face on Friday.
• Judah will not feel pain from the treatment and will recover well with less bruising/blistering than he has had in the past.

Thank God with us that:

• Judah was able to get the gas vs. the shot of anesthetic.
• Judah did not need eye surgery this time around.
• He faithfully provides good friends to surround us and help us with Judah's dr's visits.

Eating Wars and Judah's EUA

I'm sorry for the delay. I didn't get to post yesterday because our day was full. It included the boys' 18 month check up with their pediatrician. We walked through the door to where the boys get weighed and measured, and they began to scream in stereo. It served to set off a couple of the other kids in the office, too. I guess the boys are just "at that age".

They're also "at that age" when food becomes an issue. I discussed the boys' eating habits with their pediatrician (which excludes any meat or vegetables), and she gave me a plan of attack. I know I'm not the first mom to have food wars with her children, but the stress is nevertheless real and present in my world today.

Otherwise, the boys looked 'normal'. Judah's head circumference was recorded a centimeter more than what his neurologist and I measured recently, but I think that was due more to human error than that his head has actually grown. I mentioned it to Judah's neurologist and am waiting to hear back from her, but I am not concerned.

Judah has a scheduled EUA (evaluation under anesthesia) this Friday, Feb. 10th, as a follow up from his eye surgery in December. As usual, if Judah's eye pressures are elevated, the doctor will determine whether or not to perform yet another surgery. If his eye pressures are down sufficiently, Judah will be sent home after he wakes up from anesthesia.

One snag is that the boys have both been fighting a head cold. Judah has gone under anesthesia before with a cold; it just complicates matters, and sometimes has meant a "trache" tube put down his throat during the procedure to keep his airways open. That's never fun to recover from.

Please pray that:

• God will give me grace to serve my sons and remain patient with them as they learn to gratefully eat their meat and vegetables.
• the boys will become better eaters.
• Judah will fare well with anesthesia on Friday and not be sick for the procedure.
• we'll be able to use the gas mask vs. a shot for the anesthetic.
• Judah will not need another eye surgery.
• We will make it to and from Johns Hopkins safely (the appointment is at 6 a.m.).
• Tucker will be pleasant for his sitter.
• as always, Lawrence and I will be wisely shepherding our sons' hearts through these circumstances to the glory and praise of God.

Thanks for your faithful prayers!

Great News!

Just wanted to let ya'll know that Judah's most recent EEG results came back normal/negative. This is good news, confirming his MRI results back in September that there appears to be no Sturge-Weber brain involvement for Judah. We will continue with these EEG's and pray that they continue to confirm such good news for all of us. Thank you, Lord.

For You are great and do marvelous deeds; You alone are God. Psalm 86:10

EEG Head

Today's EEG went as well as anyone could expect from an 18 month old.
Judah screamed his little head off when the technician put on all the electrodes, but after his head was all wrapped in gauze, we sat back, watched Tom and Jerry and let the technician watch Judah's brain activity for a half hour. We were told he got a good EEG from Judah, whatever that might mean?! Thank you, Lord! After taking all the gauze and electrodes off Judah's head (which incidentally are stuck to his head with a vaseline based paste), we were sent on our way. The tech. tried to wipe as much of the paste off Judah's head as he could, but I walked out of Kennedy Krieger looking like I never bathe my son! So, for the afternoon, I am affectionately referring to Judah as "EEG Head".

The neuro. evaluation went well, too. Judah's head circumference remains the same. Thank you, Lord!!!

We have no more dr's. appointments for Judah this week, but mommy gets to go see the dentist. I think I have a cavity, so that may not be such a pleasant visit. :(

Until next week, God willing, Judah just gets to be a wonderfully active, curious toddler along with his brother. Tomorrow, we've been invited to climb on a fire truck that is visiting our neighbor's at home day care! Yippee!

Thanks for praying!

Upcoming EEG

Last Wednesday's eye appointment could have gone better. Judah was rather pleasant and agreeable until the doctor started to examine him. Normally, he's only really bothered when she tries to open his eyes or gives him drops, but this time he wouldn't sit still for any bit of the examination. As a result, there was little she could conclude.

These are the appointments that it becomes clear we must hope and trust in God and not in man. When Judah responds so negatively to an exam, I can begin to question our decisions to subject him to such rigorous medical care. After Wednesday's exam or lack thereof, I cried out to God for wisdom; that's what I thought I needed. Judah has a docket full of dr's. appointments for the next couple of weeks, and I began to question my judgement in scheduling all of them so close together.

I asked for my caregroup to also be praying for me to have wisdom re: how closely and which dr's. appointments to schedule for Judah. As I relayed the specifics, one couple chimed in with some very helpful and encouraging input. After pondering what they shared, I realized wisdom was not the issue, but strength and a renewed sense of self-denial and trust in God. Judah needs to be seen by these doctors; they are a means of grace to us. I needed to be reminded afresh that we are taking him through the rigors of all these specialists and tests because we believe that is for his best. I didn't realize that what I needed was not mostly wisdom, but fortitude and perseverance.

How quickly I can grow weary of doing good, especially when doing good is so hard and confronts my comfort and sensibilities. Through this gracious lot God has assigned to us and to Judah, we are all learning and going to continue to learn that while our heart and flesh may fail, God is the strength of our hearts and our portion forever.

I'm posting on a Friday because Monday we will be at another appointment.
Judah participates in a study that his neurologist, Dr. Comi, has been doing for over a year. For this study, Judah receives EEG's every three months. I don't imagine he'll be any more cooperative as this test requires a bunch of electrodes to be pasted to his head. Ideally, he'll be in a restful state for the best test results. That would indeed be an act of God and nothing less at this stage in his development.

He will also see his neurologist and have a brief evaluation by her. My hope is that his head size will be acceptable and not cause for alarm.
So, overall, please pray that:

• Judah will cooperate for the EEG.
• Judah's head size will be within his growth curve.
• God will provide sustaining grace for all of us through these next couple weeks, full of doctor's appointments.
• God will give me wisdom to know how to specifically shepherd Judah and Tucker's hearts even at their young age.

Not to be taken for granted, but a constant reason for praise, Judah remains seizure/stroke free! Thank you, Lord!

Eyes on Wednesday

Well, our little break from the doctor's is coming to a close. Starting back up this week, we will be taking Judah to see his opthamologist here in Bel Air. She regularly checks his vision and tries to see if there are any changes not only in his presciption but how he's using his eyes as well. She is also going to do the follow up from Judah's last surgery in December on his left eye, to ensure that it is healing properly. We're praying all will look good, but as always want to posture ourselves to trust God with whatever the doctor finds.

Please pray that:

• Judah's prescription in both eyes will have improved or remained the same.
• Judah's left eye will be free of infections and healing well from his last surgery.
• We will be a testimony of God's grace to Dr. Abrams and faithful to represent the gospel in our interactions with her and her staff.

Thanks for praying with us over small and great matters.

Something I Have Learned and am Learning: Self-Denial

This is one of those rare weeks that we don't have any Dr's appointments scheduled for Judah. So, I thought I'd take the opportunity to write some quotes from a book I am reading that has been both challenging and encouraging. It is Female Piety by John Angell James. It was writtne in the early 1800's, so the language is not easy to follow, though it is not impossible or I wouldn't be reading it! :)

I wanted to include a few excerpts from a section in the book where James outlines a few necessary qualities for any godly wife and mother. One in particular has encouraged me in regards to Judah and all he goes through with the lot God has mercifully assigned to him. I trust they will be an encouragement to any woman who has the patience to read through them!

The quality James is highlighting in these quotes is self-denial.

On the subject of woman's fortitude and power of endurance, I will introduce, though it may be at some length, the most surprising instance of it perhaps on record, whether in inspired or uninspired history, and it will serve as an appropriate illustration of this part of the subject of the chapter.

The Apostle John, in his narrative of the events of the crucifixion of our Lord, says with beautiful simplicity, and without a single comment, as if he could not hope and would not attempt to add to the grandeur of the incident: "Now there stood by the cross of Jesus His mother, and His mother's sister, Mary the wife of Cleophas, and Mary Magdalene." That the other women should have been there is less wonderful, though even their presence at such a scene (from which it would seem as if all the apostles had retired except John) was indeed an instance of the fortitude of heroic love.

To whatever length endurance may be carried by attendance at the sickbed of a dying friend, how few of even female heroes could witness the execution of a husband, son, or brother.

...standing by the cross, were those dauntless, holy women, sustaining with wondrous fortitude the sight of His dying agonies, and confessing their Lord in the hour of His deepest humiliation, in the absence of His friends and in the presence of his foes--and there among them was His mother.

Let females study this pathetic and amazing scene, and learn that the deepest love and the noblest grief are not that sickly sensibility, that emotional excitability, which are too tender to bear the sight of suffering, but that which, instead of sinking with hysterical outcries, retiring with averted eyes from agonies, or swooning at the sight of tears and blood, can control the feelings and brace the nerves to perform in the hour and scene of woe a part which none can perform except herself, or at any rate none can perform so well.

Doubtful that any of us will be called to witness our son's execution, but many of us will be called to wipe off bloody knees, cool the head of a feverish child, or even endure ER visits with horrendous broken bones. When those times come or more significant times of suffering in your child's life, may you be encouraged and equipped as you consider the position and the fortitude God's given you as a mother to be the comforter, the encourager, and the "truth teller".

Happy New Year!

As we welcome 2006, we do so with the awareness of God's faithful hand in 2005, and thereby confidently "laugh at the days to come" in regards to Judah's health in particular.

To recap 2005:

He developed asthma, usually brought on by a common cold, landing him in the ER twice, but never admitted. We have fared the last two colds without a trip to the ER, and are growing more comfortable and skilled at managing his asthma at home. Thank you, Lord!

Judah had two eye surgeries, one in May on his right eye and one just in December, on his left eye. While recovery in his right eye was long and difficult, the surgery seemed to not only keep the pressure down but also improve his eyesight as well. The recovery on his left eye has gone much better than the recovery in May, and we are certain it is due in part to your faithful prayers. Thank you, Lord!

We completed 6 laser treatments under the care of one of the best, if not the best, pediatric dermatologists in the nation, Dr. Bernard Cohen. We were denied coverage by our insurance company for Judah's 5th treatment, but with one appeal, the denial was overturned, and we were able to resume treatments. Thank you, Lord!

And, possibly the best news of the year: Judah's MRI which was done in September showed no evidence of Sturge-Weber brain involvement. This finding, along with the fact that Judah has had no seizures or strokes to date, makes the likelihood of brain involvement in the future decrease significantly. Thank you, Lord!

We are grateful to God for His many mercies to us and to Judah in this last year. Your ongoing concern and prayers on our behalf is a significant manifestation of God's love and care for our family. We will continue to rely on and appreciate your prayers in this upcoming year. We also want to know how we can be praying for you. So, please let us know. Email us anytime about any concern, and we will most certainly be praying. Thanks for loving us!

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.