We're Back

Actually, we've been back since Sunday evening, but have been too busy or too tired to write an update. The weekend was a success in many ways; albeit one of the most stressful, exhausting weekends of my life. There were no accidents, and we all remained fairly healthy. Our luggage was not lost, stolen or damaged. We were not lost, stolen or damaged (except for a little mental damage perhaps!) :) And, even though it was with lollipop in hand, the boys did walk down the aisle for Sam and Kate's wedding. I think we might have gotten a few pictures with the boys, and I'll try to post them once I have them developed.

Judah has been doing well with his recovery. His incisions are healing, though they don't look too pretty. The one on his belly is doing very well, so thank you for your prayers.

This week has been one of recovery mostly. Lawrence has been very busy with work, as there was much he had to catch up on from the time out with Judah's surgery and then again for the wedding. I've just been trying to get us back into a bit of a normal routine (whatever that looks like for us over here), and catching up on loads of laundry.

Next week, Lawrence and I are going away to Dallas, God willing. He has a class for 3 days, and I am just joining him. While we'll only have our evenings together, that's more than we typically have at home. And, I will enjoy a much needed respite from the demands of caring for two toddler boys, though I'm sure I will miss them sorely. They will have the opportunity to "play" with both sets of grandparents as both my mom and dad and Lawrence's mom and dad will be helping to care for them while we're gone. Thanks!!!

A couple other thanks:

• Jeff and Sarah Cole (with two "twin" baby girls of their own at home): Jeff, thanks for coming to mow our lawn on Sunday and for further helping Lawrence get our mower fixed. What a blessing you are to our family. And, thanks Sarah, for releasing him. I know it is no small thing to release your hubby to help someone else.
• "the girls": Heather, Beth Y., Emily C., and Jennifer L, for asking me to hang with ya'll one evening this week. It fell at the end of one of the tougher days for me emotionally, and your company was good medicine. Thanks for making me laugh so hard! And, thanks, Beth, for thinking up and making these nights happen for the rest of us!

I know many of you pray for us in an ongoing fashion and not just when things get "intense" around here (which feels more often than not). We really appreciate your thoughts and prayers for us. We know that you and your prayers are a major means of God's grace to us. Thank you!

We are trying to take June off from dr's appts. I say "trying" b/c there are a couple of appts. for me, but these are appts. that have been rescheduled numerous times or pushed off for much too long. So, we're taking June off for Judah's appts. to catch up with mine, I guess. Come July, there will be a few appointments for Judah, and I'll be sure to let you know so that you can pray. Until then, maybe I'll take some time to post pictures of my cuties. They're getting so big, so fast.

Many Thanks

I just wanted to give a quick update on Judah accompanied by a long list of thanks.
Judah's stitches were removed last Wednesday. The incisions on his head looked pretty good, but the one on his belly opened up a bit when the Dr. removed the stitches. She placed butterflies on it, and I have kept a dressing on it since. So, my little man has still not had a bath, but we're doing our best to close up those wounds.

He's been a pleasant little guy and only occasionally shows signs of pain or discomfort from the incision on his belly. Lawrence and I have been amazed by how much he's back to normal. We've gone to a Litte league baseball game, been on walks, to the playground and storytime at the library, visited with friends and family and even went to church on Sunday. It was initially difficult for me to take Judah out in public as I was a bit overly sensitive to the bandages on his head, but after a couple of times, I don't feel as paranoid about it. I was even able to graciously respond to a little girl's inquiries about Judah at the playground yesterday.

While Judah has recovered better than we expected, I did not do so well. As I wrote in my last post, for the last week, I have been tempted and given into many of those temptations toward self-centeredness, self-pity, anger, despair. There may be a variety of reasons why I have felt especially vulnerable and weak spiritually, but I have not even had the energy to process through them. I just know that I have not been any sort of pillar of faith or walked in a steadfast manner, pleasing to the Lord.

Yesterday at church, this scripture from Isaiah was read, and I am grateful for its truth.
Isaiah 1:18
“Come now, let us reason together, says the Lord: though your sins are like scarlet, they shall be as white as snow; though they are red like crimson, they shall become like wool."

I am holding tightly to the truth that though my performance this past week has been less than exemplary and even worthy of God's judgement and wrath, He sees me covered in Christ's blood and therefore, perfectly righteous, spotless and without blemish or flaw. Thank you, Lord!

There have been many tangible evidences of God's mercy and kindness to me, even when I was being a wretch. The first is my husband.
Thank you, Lawrence, for faithfully sticking with me, for affirming your love for me over and over again, for being willing to endure my offenses and return evil with good.

Thank you:

• Beth Young for making such a scrumptious meal and bringing just the right portion. Thanks for the balloons for the boys. They love 'em! AND, thank you for the incredibly thoughtful, creative and generous way to bless me with free pampered chef product. What a sweet treat for me and definitely an expression of God's awareness of me.
• Emily Clancy for making a yummy meal, too. Thanks for hanging around for a couple of minutes to fill me in on your life and how I can be thinking and praying for someone outside myself!
• Jo Powell for inviting me and the boys over for dinner on a night when Lawrence was coming home late. Thank you for taking on stress in your life in order to try to relieve stress in my life. You are a true friend, and an amazing cook. We LOVED the chicken parm.
• De Neumann for just being you. God has gifted you, my friend, to serve and bless others. I won't even bother listing all the ways you have jumped into our lives and especially our crises with a willing heart and ready hands to bless us. We love you!!
• Gretchen for your divinely timed phone call. Things have just been better since you called. I know a part of it was just your call, your encouragement and the hug I got through the phone, but I know more of it is your faithful prayers on my behalf. Love you so much and miss you greatly. I am storming Heaven's gates for you today, my friend, after hearing about Aaron.
• Jim and Irene for the beautifully scripted card.
• Laurie and Jason for being willing to be in the "pit" with us as much as you are able.
• So many at church who asked how Judah is doing and told us that you've been praying for us. We are so blessed by your love and care for us.

I'm certain I've left someone out. Please forgive me. Execution is very less than perfect these days. This week, we are gearing up to head out of town for Lawrence's brother's wedding.
He is marrying a gal from Illinois, and so we will be flying with the boys out to Chicago and then driving about 3 hrs. from there to arrive in Lincoln, IL, Friday for the rehearsal. We would sincerely covet your prayers. I was apprehensive about flying with the boys before Judah's surgery. I'm tempted to be even moreso since Judah's surgery. Please pray most of all that I will graciously serve my family and that the boys will do amazingly well, better than we could imagine, with the traveling and all the events of the weekend. They will be ring bearers in the wedding. Pray they cooperate and are a blessing to our family. Thanks.

No Rest For the Weary

I was up with the boys from before 1 a.m. until a bit after 3 a.m. I tried everything I knew to try, even thought about giving Judah some of his narcotic, but am glad now that I decided not to.
Finally, I brought up two sippies of warm milk and both of them did not wake up again during the night last night.

My poor husband is having to get up at 5 a.m. the past two mornings to be at a client in Germantown. He was gone yesterday and will most likely be gone today and the rest of the week 12 hours of our day. This makes for an especially long day for me with the boys.

I have been sorely tempted and must confess have not done a great job in the last several days of overcoming these temptations toward anger, bitterness, despair, grumbling, self-centeredness and some more anger. My husband has received the brunt of all of it really, and I'm sure I am not helping him to extend love, mercy and compassion to me; although, he is doing just that.

We continue to covet your prayers for us spiritually along with all the physical stress our circumstances have placed on us.

Today, Judah will be getting his stitches out, God willing, and I'll have an opportunity to follow up with Dr. Carson's P.A. Please pray that Judah's incisions are closed well enough to have his stitches removed and continue to pray for no infections or complications with his shunt.

Thanks!

A Good Weekend

We've been blessed this weekend in ways we did not anticipate.
Judah's pain has been managed on Tylenol alone. We are very grateful he hasn't had to take the narcotic prescribed to him. Thank you, Lord! He and Tucker have done very well leaving his stitches alone for the most part. Judah has been uncomfortable with the stitches on his belly, but he's been able to bear it with just a little TLC from momma.

It seems Judah's appetite is still not quite back to normal, but his diapers are slowly getting back to normal. He has been incredibly pleasant and has managed to not bump his head or belly on anything. Thank you, Lord!

Judah was doing so well that we decided last minute to make a surprise trip to my mom's in PA. Before Judah's surgery was scheduled, we were planning to spend the entire weekend at my folks' house, visiting with all but one of my siblings. Of course, once we heard Judah was going to be having brain surgery, we regretfully cancelled our trip. Due to Lawrence's busy season at work this spring, we hadn't been to see my folks since January, and we were all missing each other sorely. So, we were very grateful that Judah was doing well enough to make a quick trip. Thanks, mom and dad, for hosting us unexpectedly.

Thank you's to:

• Mary Ranneberger: for the yummy meal and cookies, for your prayers and offer for help!
• De: for bringing by some groceries and beautiful flowers from your gardens. I can't wait to bring the boys out to "Mistyglen". And, thank the Lord you did not get sick from us.
• Amy Hollin and your girls: for the cards and the sweet and thoughtfully put together goodie bag for the boys. They loved peeling the tape off the cabinets. Who would've known tape could be so amusing? Amy Hollin would, that's who! Love ya, friend.
• The Chambers: it was fun to laugh with you and to be able to spend some time with you before you leave us for a month!
• Marie: for thinking of us w/ a meal today even though we didn't take you up on it. :)
• our neighbor, Ed, who mowed our front lawn while we were gone!
• my big sis, Nici: the sweet pics. from Conner (he was so good w/ Judah's boo boo!), the yummy cookies and the sing along books for the boys. You have the gift of generosity!!

Thank you for everyone's very meaningful and thoughtful encouragement. We are being carried by your prayers and your faithful encouragement.

Please pray that:

• I can get an appointment to have Judah's stitches taken out this week.
• Judah's 3 wounds will heal well and be ready to have the stitches removed.
• Strength and much grace for this week as Lawrence will probably have some long days at work, and I will be seeking to get our house and lives back to "normal".
• if there are any referrals or authorizations I still need to obtain for full coverage of our medical bills, that I will be aware of that and be able to do that in a timely manner and with little frustration.

Thanks for hanging with us and praying for us! We appreciate you so much.

Homecoming!

Judah was discharged today around dinner time. What a blessing to all be home together again. There has been so much upheaval in our lives in the last two weeks, and we're looking forward to laying low this weekend, watching Judah closely and just enjoy being together again.

Judah's appetite has returned, but his body doesn't quite seem ready for him to eat a lot. He's thrown up twice today, once this morning and once on our way home from the hospital tonight. We are trying to discern if he's throwing up from eating or from the pain medication he's been on. I'm going to try giving him only Tylenol to get him through the night tonight, and hopefully he'll do well. Hopefully, that will help me determine why he might be throwing up.

I think the boys enjoyed seeing each other again, and they both definitely seemed to enjoy being back in their own home again. Tucker was intrigued by the bandages on Judah's head, and he adopted a new word into his vocabulary tonight: "boo boo". Hopefully, we'll be able to teach him to keep his hands off Judah's boo boo's.

Surgically, there were three cuts total: 2 on his skull and 1 on his belly. Judah seemed to be a bit more bothered tonight than he has been yet by the wound on his belly. And, he was still a bit unsteady when he tried to walk and play around on the floor tonight, I am guessing from the narcotic he's been on. I could tell he wanted to eat, but I was hesitant to give him much. I think he would have really loved a sippy of warm milk, but I held off for one more night.

Please pray that:

• I will be able to discern when/if I need to call the neuro. team at Hopkins re: any potential complications. As if I am not a bit neurotic already about observing him, I was given a new list of things to watch for that might indicate an infection w/ the shunt or shunt failure of some kind.
• I will be able to manage Judah's pain well with just Tylenol and not have to bother with the prescribed narcotic.
• Judah's stomach will tolerate a normal diet soon, and that my little man will get the nourishment he so desperately needs right now.
• Tucker and Judah will leave Judah's "boo boo's" alone and that Judah won't fall on his belly or head.
• There will be no complications with Judah's healing and his body's acceptance of this foreign object in his body.
• The shunt will function properly and keep Judah's ICP (intracranial pressure) normal.
• We will wisely, diligently and with compassion shepherd our boys' hearts through the lot God has assigned to us.
• We will all continue to rest well, nourish our bodies as well as our souls through God's Word to sort of "recover" from the recent upheaval in our life.

Thanks so much for continuing to pray and to leave comments. It means a great deal to us, and we are able to pass on to the boys how much they are loved by God's people. Thank you.

Special thanks today:

• Heather Griger: again for keeping Tucker, for talking through some of the medical end of things with Judah's situation. Boy, am I grateful that neuro. is your specialty. How kind of God to provide you for a friend. And, thanks for that awesome dinner. What a treat!
• Benjamin Kim: for the sweet card and stickers. I can't wait to let Judah play with them.
• Jo Powell and our buddies, Kyle and Liam: for reminding me it was story day at the library and going out for a treat together afterwards. We had a great time as usual with ya'll, and it was nice to do something we normally would do on a Friday (only Judah wasn't with us).
• Kara Beth: It was nice to get your call and to hear about your job. Thanks for making me laugh. It really is the best medicine. :)

I may not post so much this weekend unless there is something that comes up that we might need prayer for. But, thanks for keeping us in your prayers anyway. Having Judah recover at home may prove to be the more challenging part of all of this, but we will have to wait and see how he does.

Just the Facts...

As I am too tired and it is too late for commentary tonight.

Many of you have called or emailed for an update, and I'm sorry it's taken us this long to post something on the blog. Thank you to all who are caring for us and carrying us on your hearts and in your prayers during this time. I'm so sleepy, I have to keep blinking my eyes to clear the fog that keeps forming over my eyes..so, this post is likely to have typos and barely make much sense. I'm also sure I'll leave out many thank you's, but I'll try to get to them later.

Overall, Judah seems to be doing very well (at least I think so even if none of the medical staff is commenting in such a way). It was difficult for Judah to go so long yesterday without food; he became rather tired and weak before surgery, but not weak enough to cooperate with pre-op. exams and prep.

Dr. Carson was going to place the shunt on the right side, but after reviewing Judah's scans a second time decided to place it on the left. The surgery went well; there were no complications. Judah even seems to be doing better with the intubation/extubation than he ever has in the past which is really just remarkable.

Judah was pretty much sleeping or resting until this afternoon. While he slept rather well last night, I did not. His IV line, placed in his foot, kept getting kinked which would set off an alarm on his IV machine. The nurse would have to come in nearly every 10 minutes to re-adjust his foot or unkink the lines (there are about 4 different lines hooked into his IV among other cords for monitors). Also, at a teaching hospital there are always about 20 or more doctors/residents/med. students assigned to a case whose schedules are not really in sinc with normal people's. So, throughout the night, there were several doctors (I quit asking names after a while) in and out of the room. Needless to say, I didn't sleep so well. But, I am home tonight for a brief respite and hopefully will sleep much better. (I'm still hearing the beeping IV alarm go off in my head.)

His IV line was removed this morning b/c it has blown. Thankfully, apart of surgery prep. was to place an additional line in his hand, so everything is being given through that one now. Pray that the IV in his hand does not have to be removed prematurely, too.

I am hoping for a discharge tomorrow. In order for that to happen, Judah's IV fluids will be decreased, and they will watch to see that he is adequately hydrating himself. Also, the pain medicine he's currently receiving through IV will be cut off, and he'll be switched to a different pain medication that he takes orally so that he can take it at home if need be.

Pray that Judah will get his appetite back and hydrate well enough to be sent home. Pray that we'll be able to manage his pain with the oral meds. as well. And, continue to pray for the shunt to function properly and without any complications.

Thank you..we simply can't say it enough. We don't know why we are loved and cared for like we are but that God has lavished His love upon us, and you are just a tangible demonstration of that.

Thank you's:

• Jo and Kyle (thanks for lunch and the trucks/books. Kyle, the book you picked out seems to be his new favorite. Good pick, buddy!!)
• Lori Chambers: those wheat crackers were awesome! And, thanks for the walk outside.
• Abuelo (Judah's grandfather): How much he loves the abuelos!!
• De, Missy, Phyllis, Meaghan, Kate, Laurie, Heather, Marie, Peg (wish I could get a hug from you right about now, too): thanks for your calls.
• Chesapeake Community Church staff: thanks so much for the balloons and puppy you had delivered. What a thoughtful gesture, and one of the few words Judah said today was "balls" when he was playing w/ the balloons.

I think there must be more, but I just found myself trying to pry my eyelids open with my fingers...that is a sure sign it's time for bed.

How To Pray. How to Help.

We just can't thank you enough for how you are faithfully praying for us and encouraging us through this time. So many of you have thoughtfully sent a card or an email, called or commented here on the blog. Several of you have offered to help in practical ways, and I'm about to let you know how. And, I know there are many, many more of you who are quietly trusting and faithfully praying to our God who is seeking to be nothing but good to us and bring glory to Himself.

My friend, Karen, encouraged me tonight with this thought, "God has not brought us this far to leave or forsake us now." I'm hanging onto that tonight as I try to rest my head on the pillow and tomorrow when we're 'in the heat' of it all.

Here's the scoop for tomorrow, or at least what we know thus far.
We will be arriving to the hospital around noon, surgery to take place at 2 p.m. It's typically a 2 hour surgery with a 2-3 day hospital stay afterward. Judah can have nothing to eat or drink after midnight tonight. We are leaving Tucker with our good friend, Heather, for tomorrow and then Lawrence and I will be switching back and forth to keep Tucker at home for the remaining time Judah is in the hospital.

Please pray that:

• Judah will fare well with anesthesia, recover quickly and without complications from surgery.
• God will give Dr. Carson and all other dr's involved in Judah's case wisdom and skill to bring healing to Judah.
• God would sustain Lawrence and me in every way through His truth and His provision.
• God would give a special grace to Tucker and whoever watches him while we're at the hospital with Judah. This has been rough on him, too, and he is definitely letting us know that.
• We would have a song of gladness in our hearts for the mercy God pours out on our lives, and that we would see tangible evidence of that mercy.
• We would remain steadfast in our trust of God no matter what the outcome and desire His glory above all else.

For those who have asked how to serve us practically during this time, some suggestions might be:

• Pray, pray, pray. Fast and pray. Praise God through song and pray. There's nothing impractical about it. :)
• If you come across a scripture or a quote that encourages you, it may encourage us, too. Email it to us or send it in a card; leave it as a comment on our blog. I have told a few friends today that one does not need to have had a son who has gone through brain surgery in order to know how to encourage us. One simply needs to know God's truth and share it with us. We know it, too, but in these times, we need reminded again and again, sometimes many times within even an hour's time.
• If you're really up for a trip to the city, consider visiting us while we're at the hospital. It would probably be good to call us first, though, just so that we can make sure it's a good time for you to make the trip.
• As far as meals (some of you really want to cook for us), I'm hesitant to ask anyone to make an entire meal for us as I'm not sure where we'll be, who will be home to eat it, and whether or not we'll even feel like eating (well, me anyway; Lawrence pretty much always feels like eating). Let's say if you really want to make us a meal, let us know or Heather Griger, and we'll try to let you know when it would be best to do so. It might be better to think in terms of making us a "plate" of food rather than an entire meal or providing small, healthy snacks to bring to the hospital if you come.

We have thanked God again and again for surrounding us with His love, care and mercy in the last week as mostly demonstrated through you. There were numerous times today when I was mentally, emotionally and spiritually losing my grip, so to speak. Each time, God prompted someone to call and encourage me or pray for me. It was like He extended His arms to pick me back up off the floor again (sometimes literally) to keep on walking in His Spirit and to keep on doing good when I was weary. Thank you!

Some day, my sons will also thank you. Their lives are greatly impacted by your love and prayers. I look forward to the day when they can thank you themselves.

A New Development

Just a quick update and request for prayer. I will try to write more later on this evening.

I received a call from our neurologist this morning to tell me that she was recommending one more preliminary test called an angiogram before Judah has surgery. If it's decided that Judah should have this done, his surgery will most likely be postponed. Judah's case is somewhat unique as this type of surgery has never been done on a SWS patient per our neurologist, Dr. Comi. Judah's vascular system in his brain may present atypical complications thereby making the angiogram a good idea as that would provide the best "roadmap" for surgery. The decision is ultimately up to the surgeon, Dr. Carson, who will be reviewing Judah's scans and file today.

Please pray that God will give wisdom and certainty to Dr. Carson as to the direction to take re: Judah's case. And, please pray that Lawrence and I will rest in the knowledge that God is ultimately the One who ordains our steps for our good and His glory no matter what is decided.

A Full Day

This morning, Lawrence felt well enough to head to work which was good given all the time he's taken off or will be taking off for Judah's hospital visits. I took the boys to the pediatrician's office for Judah's pre-op. physical which went better than expected. Judah was cleared for surgery by our pediatrician, but I received a call from Dr. Carson's office later in the afternoon to let me know that they needed a blood test done to test Judah's coagulation (how fast his blood clots). God willing, Lawrence will be able to take Judah first thing tomorrow morning to have the blood test done, and the results will show Judah to be a good candidate for surgery.

Please pray Judah's blood has no trouble clotting on its own.

I found myself on the phone a lot with our dr's or their staff. Everyone involved has been very helpful in the midst of what can be a rather overwhelming situation. I have been reassured several times today that the surgery Judah will undergo is rather "routine", and having a world reknown surgeon to do it is even more reassuring. However, ultimately we trust God and His ability to employ whatever means He sees fit to bless and heal our son.

Lawrence and I are still deciding what "the plan" will be for Judah's time in the hospital. I was told today that typically this surgery lasts two hours and has a two day hospital stay. We heard from a few folks today offering to help in practical ways, and we are so very grateful to you. We will be sure to let you know if there is any practical way to help once we've put our heads together and devised the best course of action for serving our family through this time.

Please pray that Lawrence and I will seek wisdom from God, come to an agreement about how to proceed, and then humbly enlist whatever help we feel we need.

It seems Judah may still be having a hard time with his stomach. We heard quite a rumble from his tummy tonight and I changed some pretty yucky diapers today. When his stomach rumbled, my little man just looked up at us with wide eyes and patted his tummy as if to say, "did you hear that; I think it came from here." So sweet he is!

Please pray that Judah will be completely recovered from any stomach bug by Wednesday.

We also shaved both boys' heads tonight in preparation for Judah's surgery. At first it was a bit difficult to see my little man's shaved head as he resembled a cancer patient to me. Judah's head is so big and a bit misshaped; shaving it so close to the scalp allowed us to see just how much Port Wine Stain covers his head. I'm grateful his hair tends to grow quickly. I debated whether to shave Tucker's so closely, but Lawrence felt Tucker would opt to do it himself if he had the choice to show brotherly support. So, we have two bald, little men who are still the cutest things in the world to me. Wish I could post a picture, but we don't have digital! :)

I'm hoping apart from Judah's blood test early in the morning, the packing and other detailed arrangements I'll have to make, that we'll have a more normal day tomorrow.
Pray that Lawrence and I are wise about how we spend our time together and with the boys tomorrow to best prepare everyone for surgery on Wednesday.
Any suggestions? Feel free to comment.

Meltdown

Lawrence and I stand amazed by God's grace to us over the last several days, enabling us to have hope and faith, to fight temptations to grow anxious or angry by God's choices for us, and even just to keep on functioning, to "do the dailies" as I like to say. Today, however, I came face to face with my frailty and my sinful heart on many occasions.

It started almost as soon as I woke up. Lawrence spent the entire day either sick or recovering from the "24 hr" stomach bug, leaving me to care for the boys on my own. I should have known better than to walk into their room without arming myself with God's truth first or at least humbly saying a prayer for God's help and grace to get me through the day in a way that would glorify Him.

Tucker was especially needy, whining a lot and throwing tantrums, and I took less than a sympathetic posture toward him. My sinful heart was seriously exposed this morning through my son's displays of anger and impatience as my response to him was no different. Lawrence, able to hear the interactions taking place between me and my son all morning long, graciously encouraged me with these words, "Tucker needs to hear and see demonstrated from you that he simply cannot exhaust your love for him."

I am so grateful for my husband who, even from the sickbed, seeks to shepherd my heart and encourage me when I am growing weary of doing good. I knew what he said was true, but I also knew that in my own power, I was not going to be able to do that. I cried out for God's grace, and while Tucker continued to whine and throw tantrums all day, I was a little better postured to endure patiently with him. I still feel quite at a loss at times to know how to respond to him at times, but I'm trying to rest in God's faithfulness to both me and my son when we so quickly come to the end of ourselves.

Also brought to the surface today was a sense of grief over all that Judah has gone through and will be going through. On a wagon ride this morning, my neighbor stopped to talk with me. I walked right by her without saying hello, and she was surprised by my coldness. She asked me about it, and I responded by telling her about our current circumstances and began to cry for the first time since all this began 5 days ago. She was quick to overlook an offense and sought to encourage me, but I walked away seeing that I was falling into self-centeredness and self-pity, even if it was, in my mind, on behalf of my son.

There were many moments during my day that served to show just how much I am still in need of a Savior: angrily responding to my husband's request for me to stay home from an event I wanted to attend, entertaining faithless thoughts regarding our parenting and God's care for our family, giving into self-pity and discouragement when the pharmacist proved to be unhelpful and what I perceived as uncaring to our plight and many, many thoughts today with me in the absolute center of them.

There were other moments where the limitations of my humanity were exposed: lack of wisdom to respond to my sons' needs, an inability to keep committments to serve others in order to serve the more emergent needs of my family, and just a general sense of being out of wack given the lack of normalcy and routine lately.

Where does all this leave me? Desperate still for my Savior to come and be my all sufficient, to be all that I cannot be in my own strength, to pour out more grace still for the forgiveness of my sins and the strength to persevere in doing all that is required of me in this season.

As I went through my day, I became overwhelmed at times by all there is left to redeem in my heart. A sweet gal in our caregroup, Michelle, encouraged me through an email to take time to recount God's faithfulness to our family. As I did so, I was able to put my heart at rest, knowing that God alone is faithful to complete the good work He's begun in me.

Tomorrow, Judah will have a pre-op. physical at our pediatrician's office, and I will be trying to communicate to our doctors in order to gain some more details regarding Judah's upcoming surgery as well as his results from the MRI on Friday.

I want to follow my friend, Emily's example by seeking to thank people by name who have demonstrated in tangible ways God's love and care for us each day. Thank you to:

• Cathy Plack for sending along some yummy, yummy fresh veggies, fruit, dips and sweet treats. It was my first real "meal" after being sick.
• Jo Powell for bringing the food to the "sickies" and for hearing me out on the phone. You are a sweet friend, my dear.
• Laurie, Michelle and Jo Ann (Kate's mom) for your emails: all uniquely encouraging in their own way.
• Gretchen, I've still got your call on our machine. I'll enjoy playing it to hear your comforting voice over and over this week. Maybe we'll see you, too!
• Mom, we miss you a ton. Thanks for hanging on the phone through all the little interruptions to address the boys. Hope it made you feel a little more apart of our lives here.

Please pray that Judah will completely recover from the stomach virus, eat well, stay healthy and be ready for his surgery on Wednesday. Thanks so much.

Our Saturday

Our Saturday was spent resting, re-grouping and reviewing God's mercy to us over the last several days. We all got outside to enjoy a very beautiful day, took two wagon rides and walks around the court with the boys, played in the backyard and went through the house trying to assess the damage from a few days off of our normal routine.

I am feeling a lot better than yesterday and was recovered enough to care for the boys when Lawrence fell prey to the stomach virus earlier this evening. He is in bed even as I write. While it would have been really great for Lawrence to have been passed over, we are grateful that he remained well long enough to take Judah to the hospital yesterday and to care for the boys until I regained some strength. God is very kind to us.

Judah seems to still have a touch of the bug as his appetite is less than normal and we're still seeing some nasty diapers. Despite that, he has been his pleasant, normal self. Apart from the bandaid covering his hand where the IV was inserted, one would never know all he's been through in the last several days. He is such a trooper.

We continue to be blessed by your phone calls, emails and comments left here. Lawrence and I spent a couple minutes hearing one another out on how we're both doing with all of this spiritually. As we spoke, we were truly amazed by God's grace, not that we have been free from temptations to grow angry, bitter or anxious, but that God is enabling us to choose His perspective, peace and joy through all that's happening. We are certain that your prayers and encouragement on our behalf is one of the more significant means of grace in our lives right now. So, thank you and keep 'em comin'!!

Friday's Mercies

I wasn't able to update the blog any sooner than this because I ended up getting the stomach virus, too. Judah threw up twice last night, dry heaved a couple times, too, as there was very little in his stomach from Thursday's procedures. He threw up again on the way to the hospital today, but did amazingly well considering.

I have spent most of the day in my bed or bathroom, and I think I'm beginning to see the light at the end of the tunnel. Thank you, LORD! Lawrence managed thus far to remain healthy. Thank you, LORD!!

Lawrence took Judah to the hospital today while I stayed home in bed. Once again, our good friend, De, who seems always ready to serve, came to be with Tucker today, who seems to be doing much better physically. Emotionally is another story. Please keep praying for his little heart. He seems to do well with sitters once mommy and daddy are out of his sight, but when he's around Lawrence or me, he becomes very demanding, clingy and angry. We really need wisdom and grace to know how to practically demonstrate our love for him as well as shepherd his heart through our circumstances.

Judah's trip to the hospital, from my vantage point anyway, went very well. Dr. Carson was able to see him despite his very booked clinic schedule and the emergency surgery he had last night. He decided that Judah will have brain surgery next Wednesday to place a tube shunt in his brain, allowing the excess fluid to drain into his abdomen. The tube shunt will be permanent and account for Judah's growth over his lifetime.

Judah also had an MRI done and right after being put under was able to have an opthamology evaluation as well. Because everything has been happening so quickly, ensuring insurance coverage can get rather tricky. However, we saw God once again come through for us, even down to the last minute. I must recognize what a major means of grace our pediatrician's office has been to us since the boys were born. We see Dr. Claudia Beck with Pediatric Partners, and the office staff has been simply outstanding in helping us, and even at times doing what policy says cannot be done, in order to expedite insurance coverage and make our journey with Judah as stress free as it can be as far as they're concerned.

I was able to speak with some of you today, and I have read our emails and the comments left here. We are really encouraged from hearing from you, and absolutely feel buoyed by your prayers on our behalf. My friend, Laurie, wrote a God-inspired post on her blog regarding the suffering life brings, and I would encourage you to read it. Our friend, Zoanna, wrote this comment to Laurie's post:
"Trials and suffering wean us from this world." How well said. And yet how quickly we want to rush out of our trials and relieve the suffering that others are going through as well. There's a mystery. When we pray, "on earth as it is in heaven," do we want all the gold of heaven and yet still want to hold onto the silver and bronze of earth?

Help us to gain the "gold of heaven" by helping us to fight for God's perspective, God's peace and even God's joy in the midst of these trying circumstances. My mind knows the truth that we are being treated better than we deserve and that even beyond that, we are only experiencing God's goodness and mercy. But, my heart often does not comprehend this. We appreciate you sharing any scripture, quote or encouragement otherwise that might help us fight the good fight of trusting God.

Tangible mercies today:

• our good friend, DE, jumping to serve us by staying with Tucker today. She went above and beyond as always by cleaning our floors, doing many loads of laundry, washing our windows, and who knows what else. How humbling, De, but how much appreciated, my friend. We love you!!
• Lawrence's brother, Sam, who accompanied Lawrence and Judah to the hospital and proved to be a huge help today.
• Dr. Carson fitting us into his busy schedule today and next week for surgery.
• Tucker doing much better health-wise.
• Your many calls, notes and prayers on our behalf.

Please pray that:

• Our entire household will be on the mend soon from the stomach virus, get much needed rest, and that those who served us in the last couple days will not get sick from being around us.
• Judah will not experience asthma complications from being intubated for today's MRI.
• We will be able to get all the authorizations and referrals needed for all the medical services to be covered entirely.
• Judah will be healthy for surgery next week.
• All the doctors involved in Judah's care will confer as to Judah's situation and best course of treatment.
• God will guide Dr's Carson's gifted hands to perform a flawless surgery on Judah next Wednesday.

Please feel free to email us with any questions you might have regarding the medical end of Judah's situation. We may not have answers for you, but your questions might help us think about things we need to ask our doctors. Thank you so much for all your love and care and prayers!

Further Complications

As of 2:30 a.m., Judah has thrown up, too. Thankfully, we had just been awake to flush his IV line, so we heard him cry out after he had thrown up in his crib. After putting a call into the neuro. dr. on call, she felt that we may still be able to go ahead with tomorrow's schedule. It will all depend on how Judah is feeling. Hopefully, he won't throw up again. And, hopefully, I won't get sick as my stomach has been upset ever since we brought Tucker home.

Change of Plans

Tucker just came home at 11:30 pm after having thrown up at Heather's. So, it looks like at best one of us will be staying home to take care of Tucker tomorrow, one of us will go to the hospital with Judah, and probably neither of us will get much sleep tonight. Please pray for us.

As of Thursday Night

It is the end, God willing, of a very long day. This post will either be brief and leave out many details or be super long and share too many details given my state of sheer exhaustion.

We arrived at Hopkins' ER around 10 a.m., and it was surprisingly empty. Judah was seen right away. He was given an IV, and blood was drawn. He had a head CT scan a little while later, the results of which looked good overall. He was seen by the opthamologist, a neuro. resident and then took a pretty good nap. Upon waking, he was taken into the ER's OR for a lumbar puncture, the results of which were not so reassuring. Once back into our room, he slept some more on daddy's chest. We had more doctors come in to see us, talk with us, confer with all the other doctors involved in Judah's case, and eventually it was decided that we could come home tonight, to return tomorrow morning for a consult with Dr. Ben Carson, another opthamological evaluation and an MRI scan in the afternoon.

Things that were a challenge today:

• Judah screamed at nearly every medical staff who walked through our door, did not cooperate well for most of the evaluations and proved to be one of the most resistant and strong patients the medical staff had ever dealt with in pediatrics.
• The doctor went through two lumbar kits.
• Even with a double dose of sedation medicine, Judah not only remained awake for the lumbar puncture but also fought through the entire procedure.
• I (Briana) had a splitting headache the entire day which only worsened as the day went on.
• At the end of the day, there is still no firm diagnosis to coincide with the findings of Judah's tests. (Sound familiar, Emily and James? Interesting to see how God is choosing to keep these things hidden in both our children. Won't it be amazing to see how He brings glory to Himself through this?)

In the midst of these and other challenges, Lawrence and I were amazed by the many evidences of God's mercy and care for us today. Some of those were:

• Judah's nurse got the IV in with one try. Judah was actually thrashing about and in his thrashing managed to push the IV right into his vein. The nurse exclaimed, "that was a miracle." We know it was the mercy of God to Judah!
• The opthamologist was able to get a good look into Judah's eyes to confirm our local opth.'s findings from yesterday even while Judah kicked and screamed.
• Judah took a great nap.
• Radiology was able to fit Judah in for a CT scan unusually fast.
• While the test results today were not necessarily good, they did not warrant an overnight stay at the hospital or any immediate intervention.
• Dr. Ben Carson requested for Judah to be squeezed into his clinic schedule in the morning which is a tremendous blessing given his reknown and demands on his time.
• The staff was able to schedule an outpatient MRI for Judah for tomorrow which allowed us to come home tonight. Most of you reading this simply will not know what a true miracle this is. Typically one must schedule outpatient radiology procedures months in advance.
• And, probably the most unheard of blessing was that the ER attending allowed us to take Judah home with his IV in tact. This is never done for patients for a variety of reasons, but liability to the hospital is probably one of the greatest. This requires a little maintenance over night for me, but I was well educated in what to do and what complications would look like with it. The reason this is such a blessing is that Judah won't have to go through the process of being stuck again tomorrow for the anesthesia for his MRI.

We definitely felt tangibly the truth that God goes before us and comes behind us found in Ps. 139, probably the most cherished passage of scripture to me from the time I became pregnant with the boys. The day was not without its stress. Judah's anxious response to the medical staff, the equipment and the evaluations is upsetting at best, but we are trying to entrust his precious little heart to God's care as we are simply at a loss to know well how to bring understanding to his mind and comfort to his heart.

Among all the evidences of God's care, the care expressed by many of you, our friends, is among the most treasured. Our good friend, Dr. Aaron Chambers did not pass up the opportunity to come and see us while he was on duty at the hospital. He came and spoke with us, prayed with us, read over Judah's charts, and made sure those who were caring for Judah knew that he was a close, personal friend of ours, further ensuring quality care for Judah! Thank you, Aaron. And, thanks to your wife, Lori, who calls to see if there's anything she can help us with, who takes our calls when we discover something she can help us with and who faithfully waits at home, praying on behalf of us and our sons.

Thank you to all who called or sent messages to our email, home phone or this blog: De, your encouragement to sing our way through the day was so timely and helpful and Spirit-inspired for sure. We did indeed find ourselves singing our way through much of our day. Thank you, thank you for that encouragement to praise Him through song. Thank you Phyllis, Marie, Gretchen (how incredibly wonderful to hear your voice on our machine when we got home), Jo, Jason and Laurie, our parents, Yvette (who also came to see us in her scrubs before her shift and has made herself available to us tomorrow, too), Michelle (thank you for being so thoughtful to take a caregroup responsibility off my plate. Wow, what a blessing your thoughtfulness is to me), and Marlowe (thanks for leaving a message even though we missed your call. We know how much you love our little guys.)

I must single out one gal in particular though, who simply blows me away again and again with her tangible expressions of love for us. Not just in this instance, but all the time, Heather Griger finds some way to communicate her heart for our family. Sometimes, I'm convinced she sits up at night just thinking up all kinds of creative ways to bless us, but I know this is simply an evidence of God's amazing grace in her life, enabling her to be such a good friend not just to us but to many others. Heather not only kept Tucker all day today, but is keeping him overnight and probably all day tomorrow, too (This is while she has her own 16 month old at home and is 6 months pregnant). She brought a great big firetruck helium balloon for the boys to play with last night and a sweet sign/card for Judah. This morning when we dropped off Tucker, she gave us a little goodie bag with a hysterical card (made me laugh so hard, I cried), 2 pears and a container of trail mix (the only thing I ate all day today). And, if that wasn't enough, she took the liberty to make some calls, pulling her "clout" as a Hopkins nurse, to try to ensure we see Dr. Carson tomorrow morning as soon as possible. Heather, there is simply no way I can ever repay you; I only can be grateful to God for you and spurred on by your example of what covenant friendship looks like between believers. Thank you, friend!

So, the bottom line re: Judah's status:
There does appear to be some measure of intracranial pressure going on in Judah's brain.
There does not appear to be any outward manifestations of that pressure as of yet, which is great news. This gives us an opportunity to be pro-active rather than reactive and hopefully spare Judah from any ill effects from the increased pressure in his brain.

We will be going back to Hopkins tomorrow morning to see the world reknown neurosurgeon, Dr. Ben Carson, our opthamologist at Hopkins, Dr. Parsa, and to have an MRI done in the afternoon.

Please pray that:

• Judah will cooperate for all the evaluations tomorrow.
• There will be some decisive diagnosis and plan for intervention as a result of tomorrow's tests and evals.
• Strength and grace for Lawrence and me.
• Tucker will have another great day with Heather and baby Rudy; strength and grace for Heather who is caring for Tucker.
• We will not have to admit Judah to the hospital for any reason.

Thanks so much. Feel free to call Lawrence or me on our cell phones. We may not be able to answer or return your call, but will try to if we can. Even if we can't, we appreciate your thoughtfulness and concern on our behalf.

Please Pray

I don't normally post mid-week anymore, but we haven't been in this position in a while either.
I took Judah to the opthamologist today for a follow up on some findings from his last EUA which was in February. At that time, the glaucoma surgeon saw some swelling on his optic nerve and suspected intracranial pressure, although unsure whether the swelling was more attributable to the surgery. So, he recommended that we follow up with Judah's opthamologist.
We did so today, and she saw swelling on both of his eyes, confirming Dr. Congdon's findings. She suggested we contact Judah's neurologist to see how she wanted to proceed.

After being in touch with Judah's neurologist, Dr. Comi, it has been decided that Judah will be admitted to the ER tomorrow morning (Thursday) in order to have a head CT Scan done as soon as possible. Following that, he will have an eye exam and a thorough neurological evaluation. If warranted, Judah will be admitted to the hospital in order to have an MRI and possibly a lumbar puncture done on Friday. If the MRI can't be scheduled until next week and it looks like there is no emergent medical need otherwise, we will be sent home until next week when we can get the MRI and lumbar puncture.

Speaking with Dr. Comi this afternoon, she indicated that she cannot speak to the cause of the swelling around his optic nerve for certain until she sees the results from the tests and therefore cannot predict what sort of intervention may be necessary if any. She also said she's never seen this manifest in such a way in SWS patients. She is not certain the swelling is even associated with the SWS and wants to be sure she does not overlook something else that could be going on with Judah, unrelated to his SWS.

While this news is unexpected and causing us to act quickly, we are seeking to be grateful and humbly respond to this new development, knowing that this does not catch God by surprise. We're seeking to affirm the truths of which we've been reminding friends of ours recently who are going through their own set of perplexing and trying circumstances. It's as Lawrence said to me today, "We're not in a sprint with Judah; we're in a long distance run of endurance." So, I'm looking at this as a little bump in the road, and choosing for now and hopefully in a sustained way, to give thanks for the amazing mercy God has shown to us thus far in regards to Judah's health and his care.

We are going to Hopkins where he is so well cared for by many well trained, knowledgable and caring professionals who we see as a major means of grace in our lives. We are calling out for prayer and trust that God hears the cries of His people and sends mercy and grace from Heaven. We are trying to keep perspective, and not "borrow trouble from tomorrow", as my friend Karen is fond of saying.

Judah has been doing wonderfully developmentally, and outwardly shows no signs that there is anything wrong internally. Nevertheless, we are following through with the recommendations given to us by his doctors, and trust God will bring to light what is wrong and how to make it right.

Please pray that:

• There will be no trouble with our insurance covering all the expenses we'll be accruing at hospital.
• Judah will fare well with anesthesia, all the poking and prodding and the potential hospital stay.
• Tucker will do well with his babysitter all day (Thank you, Heather, for being an amazing friend and servant to our family.) Tucker has been going through a really tough time lately with separation anxiety, so the thought of leaving him again and for this length of time is breaking my heart and presents its own temptation to fear for his precious, little heart.
• Judah will not have to be admitted to the hospital, but instead be able to do the MRI and lumbar puncture as an outpatient next week.
• Grace and strength to sustain us for whatever lies ahead.
• We will continue to trust God and shepherd our boys' hearts in a way that affirms God's truths.
• We will be a witness to the watching world of the amazing grace and love of our God.

There are probably other things that should be covered in prayer, but my brain is fried at the moment. I will try to keep this updated as much as possible. Thanks for loving us and praying for us.

Two Appointments for Judah This Week

Briefly, I wanted to ask anyone who reads our little blog to pray for Judah this week. He has two appointments, one with his opthamologist and the other with his dermatologist.

I try to limit his appointments to one a week at the most because it is stressful for all involved: trying to find a babysitter, leaving Tucker behind, putting Judah through the waiting and the appointments themselves and just the general drain it has on our energy and productivity here at home. However, I'm choosing to believe that God Sovereignly ordained for these appointments to fall within the same week.

The first appointment is with his opthamologist, Dr. Abrams, on Wednesday. This is to follow up on some findings of concern from his last EUA for his eyes. She needs to dilate his eyes and check for swelling on his optic nerve. This requires a lot of cooperation that I have yet to see Judah offer. I'm setting my expectations low and anticipating that she'll recommend he be put under anesthesia to get a good look at the optic nerve. However, I'm going to ask God and ask you to ask God for a miracle: that Judah will sit still and give Dr. Abrams a good look into his optic nerve. Also, pray there will be no notable swelling as that may indicate intracranial pressure.

The second appointment is with Judah's dermatologist, Dr. Cohen, for a laser treatment on his face. Please pray that my good friend, Heather, and I will be able to apply the numbing cream as quickly and with as little stress to Judah as possible. Pray that Tucker will nap well at Heather's house while Judah and I are gone. As always, pray that I will wisely and with compassion shepherd my sons' hearts through these circumstances and that God's Spirit will fall upon them to give them peace. Pray that the treatment itself will be effective and that Judah will not blister too badly.

Thanks so much for your ongoing prayers on our behalf. We are always in need of them and greatly lifted up by them.

Against All Hope

I'm sorry I missed last week's post. Lawrence and I were given the rare treat of getting away alone together for an overnight trip to Solomon's Island in Southern Maryland. We spent a very relaxing time away and came home to my best friend, Amanda's visit with her son, Benjamin. We had a delightful time playing with Amanda and Benjamin. The boys got along very well, and it was a very special treat for me to have extended time with my college buddy. Thanks, Amanda, for making the four hour (five with kid(s) in tow) trip to spend a couple days with us. We LOVED seeing you!!

I wanted to give ya'll an update on Judah's most recent EEG and neurological evaluation. Dr. Comi was pleased with Judah's development and concluded that there were no outward signs of seizure and/or stroke activity. His EEG confirmed her evaluation as well. THANK YOU, LORD! However, she did measure his head to be a half centimeter bigger than the last visit, which isn't that much of a jump except that Judah's head is already within the large adult sized head category. Additionally, there were some findings during Judah's last EUA for his eyes that Dr. Comi asked me to follow up with a.s.a.p.
So, after several phone conversations with a couple of Judah's doctors, we have an appointment scheduled for next week, and I will let you in on more of the details of that and ways you can pray for us next Monday.

Today, I wanted to write another post on behalf on my friend, Emily, whose daughter, Alivia, remains undiagnosed but now with outward signs of the apparent infection or disease within. Please continue to pray for James, Emily and Alivia Haughery and feel free to "stop by" the blog Emily has been keeping for the most recent updates.

Some time after Judah was born, I began exposing myself to literature and personal stories about the real and sometimes grave outcome of Sturge Weber Syndrome on one's life. What was also being brought to mind was the reality of my father's death, a man who loved the Lord and lived to serve Him yet died nevertheless of a malignant brain tumor despite our faithful prayers and fervent hope that he would live. I felt too well acquainted with the reality that God sometimes does allow our greatest nightmare to turn into reality, and I hesitated to hope and pray for better outcomes for my son.

At the same time, I knew there is no room in a believer's heart for bitterness or mistrust of God's goodness. He has proven His love for us on the cross and promises furthermore to give us every good thing (Romans 8:32). I did not know how to face the hard truth that Judah could have a very difficult lot assigned to him while also hoping in God and praying to God for a better outcome for his life. It was in the midst of this struggle that God led me to Romans 4, verses 18-21.

In hope he [Abraham] believed against hope, that he should become the father of many nations, as he had been told, “So shall your offspring be.” 19 He did not weaken in faith when he considered his own body, which was as good as dead (since he was about a hundred years old), or when he considered the barrenness of Sarah's womb. 20 No distrust made him waver concerning the promise of God, but he grew strong in his faith as he gave glory to God, 21 fully convinced that God was able to do what he had promised.

As I read this, I felt like Abraham's life was answering my heart's struggle.
He believed against hope.
He faced the facts.
He was 100 years old.
He saw that Sarah's womb was as good as dead.

Abraham did not ignore the reality of his situation, just as I and anyone who walks through any measure of suffering or hardship should not and cannot ignore the reality of our circumstances.
However, the passage also says that
Abraham, in hope, believed God's promise.
He did not weaken in faith.
He did not waver through unbelief.
He gave glory to God.
He was fully persuaded that God had the power to do what He promised.

Now, it was clear what God had promised Abraham: that through his seed, he'd become the father of many nations. God sent an angel to Abraham to reveal this promise. However, God did not send an angel to reveal any specific promises to me regarding Judah's health and well being. As I wrestled with the Lord, I began to see that the promises I wanted to hear from God appealed more to my flesh than to God's glory. I wanted God to promise me that Judah's brain would be alright for his entire life and that Judah would not lose his eyesight. I wanted God to promise me that Judah's skin would clear up and that he would someday marry a woman who would love him for everything he is and everything he's not. I wanted God to promise me that my son would have friends who would care for him, support him and love him unconditionally.

As I searched the scriptures, I did not find God promising me any of these things. But what I found was better. I found that God's promises offered hope and healing to something deeper, my soul. I found that His promises invited me into a reality where He is glorified and I am most happy when that is true. As I searched through His Word, desperate for promises to sustain my soul and to help guard my heart from bitterness, I found that I have so much to be thankful for and that no matter what the outcome may be for Judah, I can have hope and peace and humbly resign to God's choice for us. I found and continue to see that God knows better than me.

It is not wrong to pray for Judah's complete physical healing, and in fact we do so every night before we tuck the boys into bed. It is not wrong to hope for all the things I mentioned above. But, for me, I had to come to the point where I could, along with Abraham, face the facts of all that Judah's SWS might mean for us while not wavering through unbelief and not weakening in faith. I had to come to the point where I could regard the promises of God found in His Word and bring glory to His name by humbling resigning to His gracious and merciful ways with us.

If you are in the midst of trying circumstances, my prayer is that wherever you are in the process of facing the facts, you will REGARD THE PROMISES of God, BE STRENGTHENED in your faith and GIVE GLORY to GOD, fully persuaded that God has the power to do what He has promised.

God of Promises Not Statistics

After the boys were first born, Lawrence and I were faced with many uncertainties regarding Judah's future. We had a diagnosis of Sturge-Weber Syndrome and a little bit of knowledge about what this might mean for Judah's future as well as our own. Words like "seizures", "stokes", "mental retardation" were thrown out at us. The Discovery Channel ran a special on a Extreme Surgery that detailed the journey of Geoff Ritchie, a young man whose facial Port Wine Stain had grown and blebbed to unusual enormity, causing not only what most would consider severe disfigurement of his face but also functional problems as well. We learned about a related syndrome, Klippel Trenaunay which effects ones limbs, causing the affected one to grow longer or bigger than the unaffected one as well as causing potential circulatory issues.

Early on we also found a group of folks who quickly became like a second family, all either having Sturge Weber themselves or having a family member with SWS. We were directed to a foundation that was established for the support of SWS/PWS/KT patients and families as well as further research on these syndromes known as the Sturge Weber Foundation. Through the on line forum and the SWS Foundation's publication, Branching Out, we would read stories of others experiencing such unique manifestations of the same diagnosis.

The combination of all these things often tempted me to reason and fear. I would gather statistics from our doctors and wonder if Judah would break the odds. I would look for all the pictures I could on line and elsewhere of people with Port Wine Stains trying to convince myself that my son wouldn't end up "disfigured" like the man I watched on the Discovery Channel. I would celebrate every milestone Judah would hit while the temptation to fear he wouldn't hit the next one would be crouching at my heart's door.

In a persistent and ongoing manner, the temptation to reason using man's knowledge of SWS and/or fear for our future seeks to overcome me. Thankfully, God has mercifully given me respites from that fight, but it is usually not long before I'm battling again in the war to trust God and His promises rather than statistics and man's wisdom.

My friend, Emily's recent news and circumstance with her daughter, Alivia, who doctors are still trying to nail down a diagnosis for, has brought to the surface once again the many fears I am tempted with regarding Judah and his SWS. I am faced once again with the choice to reason or to trust. Simultaneously, the SWS Foundation's issue of Branching Out came in the mail; I read it cover to cover yesterday while waiting at a doctor's office. In it, I read an article about a little girl born in the same month as Judah and Tucker who had her first seizure a couple of weeks before her first birthday. She lost use of one side of her body as a result of her seizures and with the side she has mobility, she has Klippel Trenaunay. And in spite of the anti-convulsant meds. she takes daily, she continues to have seizures on a regular basis. As I'm confronted with these two situations, it's easy for me to thank God that Judah has a diagnosis and that he's past his first birthday, still growing and developing rather normally.

But, then I also read an article in Branching Out entitled, "When There Isn't a Happy Ending", all about the reality that SWS and the effects it has on one's body sometimes leads to death. Another person wrote a biography in which she states her first seizure was at age 2. So, with that knowledge I am tempted to fear again, to wonder if Judah will yet have a seizure or how extensive of an impact Judah's SWS will have on his overall health and lifespan.

At the beginning of his life and even now, I consistently must return to this truth: My God is a God of Promises not Statistics.

• God's Word does not promise me that Judah's sight will be presevered, but it does promise me that His grace will be sufficient for me and for Judah and that His power is made perfect in our weakness. (II Cor. 12:9)
• God's Word does not promise me that Judah will never have a seizure, but it does promise me that God will never leave us or forsake us. (Heb. 13:5)
• God's Word does not promise me that Judah will not be disfigured, but it does promise me that NOTHING can separate us from the love of God. (Rom. 8:39)
• God's Word does not promise me that Judah will continue to develop and grow as other little boys, but it does promise me that the good work He's begun, He will bring to completion. (Phil. 1:6)
• God's Word does not promise me that Judah will live a long life, but it does promise that His goodness and love will follow us all the days of our lives. (Ps. 23:6)

Oh the many and precious promises of God that are all mine to believe and stand firm in as the tempation to fear wages its war in my heart and mind.

When the boys were first born, a friend of the family passed onto the boys many books her kids had outgrown. One of my favorites was a book entitled, "My Promise Rainbow", published by Standard Publishing. It takes the story of Noah and walks the reader through the colors of the rainbow. Each color represents a scary part of the flood account: purple for the storm, blue for the rain, etc. After the particular color of the rainbow is talked about, this phrase follows on every page, "But God remembered Noah, who He gave this special promise to:
'A storm is coming but I'll be with you.
I'll keep you safe. My promise is true.'"

That little poem, written in a children's story book became like an anchor for me for many months. It's typically the material written for children that speaks most profoundly to my simple heart and mind.

Whatever storms you are in or statistics that have been presented to you, my prayer is that you will rest in God's gracious and everlasting promises. And, please continue to pray for us, that we will do the same.

This Wednesday, Judah has a routine EEG and neurological evaluation. Pray that it will go well, that Judah will cooperate for the test and they'll get a good reading from the EEG. Also, there was a finding during Judah's last EUA for his eyes that I need to follow up on with his neurologist and potentially our opthamologist, too. Please pray that God will give me the right questions to ask, the mind to comprehend all his neurologist says, and a peace, knowing all things are in God's hands.

Why? Or Who? Part 2

continued quote from yesterday's post...

The Sovereignty of God became a strong pillar in the foundation of my faith. Even though things did not improve for a very long time, I clung to this passage: "And we konw that God works all things together for the good for those who love God, to those who are called according to His purposes" (Rom 8:28). God is in charge of all things. He is fully in control. He is not subject to random quirks in the system, nor is He at the mercy of Satan.

Nothing comes to us except first through the hands of our loving heavenly Father. Our child was not God's accident, or mistake, or my personal lapse in prenatal care. God has purposes we don't know about. He knows the end from the beginning. Just knowing that He does have a bigger purpose in everything that happens in my life, and that it is for good purpose, is a great relief. That is why the first three words of Romans 8:28, "And we know," are so important. If we didn't know, we would be relegated to consider our "bad luck" and spend the rest of our lives trying to "get over", or oppose this "bitter fate." Instead, I can see my child as a special gift from God, not a burden or a punishment. And when times get tough, He tells me:
"Come unto Me, all who are weary and heavy laden, and I will give you rest, Take My yoke upon you, and learn from Me, for I am gentle and humble in heart; and you shall find rest for your souls. For My yoke is easy and My load is light" (Matt. 11:28-30)

God has ALL things in His hands: he knows all about your child and his needs.
"My frame was not hidden from Thee, when I was made in secret, and skillfully wrought in the depths of the earth. Thine eyes have seen my unformed substance; and in Thy book there were all written, the days that were ordained for me when as yet there was not one of them (Psalm 139:15, 16)

God aslo knows all about you, your needs and your suffering. Your child comes to you from God with His grace. Like the Israelites in the wilderness, you have the opportunity to gather just enough daily, and no more. We have a tremendous opportunity to know His faithfulness and goodness as well as our own need and deep dependence on Him. As parents, it is our privilege to go to Him often.
"For we do not have a high priest who cannot sympathize with our weaknesses, but one who has been tempted in all things as we are, yet without sin. Let us therefore draw near with confidence to the throne of grace, that we may receive mercy and may find grace to help in time of need (Heb. 4:15, 16).

God would not give you this child to ruin your life and the lives of every member of your family, for it is God who has promised "to work all things for good."

Why? or Who?

Several weeks after returning home from the hospital with Judah and Tucker and in the midst of processing through the ramifications of Judah's diagnosis of Sturge-Weber Syndrome, my husband directed me to an article in The Journal of Biblical Counseling, put out by the Christian Counseling & Educational Foundation, entitled, "God at Work in a 'Special Needs' Family" by Miltinnie Yih. I read this article over several times and found great hope and even vision for the lot God had assigned to us. Here is a portion with some length that I found especially challenging but deeply encouraging as well:

As I wrestled with the "Why's" of David's autism, it dawned on me that this was the wrong line of thinking. Why do I want God to tell me why? Would reasons really satisfy me or would they simply put me in a position to judge God instead? Could I really understand the workings of God? Though Job asked, "Why?" God only answered by asking, "Who?"

Who is this that darkens counsel by words without knowledge? Now gird up your loins like a man, and I will ask you, and you instruct Me! Where were you when I laid the foundation of the earth! Tell Me, if you have understanding, who set its measurements, since you know? Or who stretched the line on it? On what were its bases sunk? Or who laid its cornerstone, when the morning stars sang together, and all the sons of God shouted for joy? (Job 38:2-7)

While on earth, we may not know the "Why" for difficult situations. But we can know the "Who" of it. Who is in charge? God is in charge! "I know whom I have believed and I am convinced that He is able to guard what I've entrusted unto Him against that day" (II Tim. 1:12). Asking "Why?" will not give us the right perspective, only asking "Who?" will.

I want to continue the rest of this portion from the article tomorrow.
I am dedicating these posts on "Getting through Grief" to Alivia Haughery and all her family, who are walking through an unimaginably difficult time as they wait for over a week now for a clear diagnosis for their 1 year old daughter. Please continue to pray for Alivia and her family. You can check out the blog Alivia's mom keeps for her by simply clicking on her name highlighted above.

Getting Through Grief

Just two days ago, I received a phone call from a dear friend of mine, Emily. The message left on our machine went something like this:
"We found out this morning that Alivia has leukemia, and we are heading to Hershey Medical Center this afternoon. Could you be praying for us and asking others to pray?"

Alivia is Emily and James's first baby, and conceived after many months of trying, waiting and then intervening with some medical help. She had her 1st birthday on March 29th. She is the first grandbaby for both sides of their family, and she is a doll baby. She is petite and precious. She is a gift from God, and all who know her, love her. She has brought much joy to many people's lives.

Would you please pray for Alivia, for her parents, James and Emily, for her grandparents, Dave and Gretchen, Bill and Cynthia? Here is a link to a blog Emily started a while ago just for fun. She is now using it to keep those who care informed as to Alivia's most recent developments with the leukemia. http://aliviarachelhaughery32005.blogspot.com/.

Emily called me twice on Saturday, the second time to reach me directly. She asked if I would write down some verses and/or quotes that helped and continues to help me with the lot God's given us through Judah's SWS. So, privileged to comfort my friend with the comfort I've been given, I am going to do just that. And, I decided I would like to post bits of what I share with her here on Judah's blog. It is only fitting that those who so faithfully pray for us and have cared for us see how the Lord is multiplying the good seed you planted in our lives, thirty, sixty or one hundred fold.

One of the first scriptures that became very dear to me during those first days and weeks with Judah and Tucker was Isaiah 41:10,

...fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you,
I will help you,
I will uphold you with my righteous right hand.

I will end by saying that God strengthens me, helps me and upholds me and our family in great measure through your prayers. It is undoubtedly true. Would you be apart of stengthening, helping and upholding Emily, James and baby Alivia today by saying a prayer on their behalf?
Thanks.

Laser Treatment this Week

I missed a post last Monday because the boys and I made a special trip to Indiana, PA, to stay with my brother, sister in law and two nieces. Lawrence was in New Orleans on business, and we both felt it would be a good time for me to go to Indiana for a visit.

Traveling 4+ hours alone with the boys proved to be more difficult than I had envisioned. Let's just say "inconspicuous" would be the last word anyone would use to describe the three of us out in public. Mostly, God gave me grace through a spirit of humor, and I was able to just laugh at the hilarity of what I was trying to accomplish by taking the boys out to dinner on the road, using the bathroom twice and stopping to grab a drink while we filled up our gas tank. I'm sure we were quite an amusing sight for all the weary travelers on the road with us. :)

Nevertheless, we made it out to Indiana and back home all in one piece. And, while caring for the boys out of their element proved to be much more difficult than I anticipated, our trip to visit friends and family afforded several opportunities to catch up with old friends and make memories with the boys' cousins, Mia and Ainsley. We were cared for with excellence by my sister in law, Krista, as well. She is tireless in her heart to serve others. Thanks.

This week, Judah is scheduled for a laser treatment on his upper arm, trunk, back, neck and ear. Judah has a pesky patch of excema on his back that refuses to clear up. As a result, he either blisters fiercely there or Dr. Cohen just doesn't laser that patch at all.

Please pray that:

• the patch of excema will heal before Judah's laser treatment on Friday.
• I will find someone to help me apply the numbing cream and keep Tucker.
• Judah will be able to rest some before his treatment as the appointment is scheduled for the middle of his naptime.
• we will not have to wait long for his treatment once we arrive for our appointment.
• strength for me to continue subjecting Judah to these treatments which are very traumatic but necessary.
• the treatment will be painless and effective.
• we will continue to find favor with Dr. Cohen and his new nurse, George.
• as always that God will give us all grace as we seek to care for and shepherd our sons through these circumstances.

Thanks so much for keeping us in your prayers!

Thus Far, He Has Been Good

There have been several occasions over the last couple months that have caused me to become so overcome with gratefulness to God for my son that I have wept or had to just pause for a few moments to really thank God over and over for how good He has been to us in this journey with Judah.

One of those moments came when Judah was recovering from anesthesia from his EUA back in February. The nurse relayed how functioning Judah was for a little boy with Sturge Weber and how much "worse off" are some of the SWS kids who they treat. It made me stop and consider that while many of the moms around me don't have to go to the hospital regularly and put their kids under anesthesia, there are other moms who I don't know walking through much more trying hardships with their children, who are laying down their lives in much more obvious ways than I am for my sons and family, and who may grieve daily the loss of their own dreams or expectations for what their little one would become.

Another moment came the day we picked up Judah's glasses. While the temptation existed to complain or worry about the cost of these glasses or the battles ahead to have Judah keep the glasses on his face, the Lord graciously allowed me to see and instead think upon the fact that we could afford these glasses for Judah at all. Yes, it may come at the cost of a weekend away or new clothes, but it doesn't come at the cost of feeding my family or owning a home. I was overcome with gratefulness for the financial means to provide such care to my son. Many around the world simply go blind not just because they can't afford glasses, but they can't even afford to see a doctor in the first place!

Finally, I was undone once again last night after putting the boys to bed with how well Judah is doing in comparison to the prognosis given to us in those first days and weeks of his life. We were told he could have seizures, stokes and be impaired mentally. We watched videos that showed us the dramatic effects a Port Wine Stain can have on a person's appearance and bodily functions. And, while these outcomes still remain a possibility for Judah, I am giving thanks today that God has spared us of many of the more difficult effects of SWS. I am also giving thanks for tomorrow because while I do not know what tomorrow will bring our way (it could be the late onset of seizures or strokes; it could be the rapid growth of Judah's PWS in one of his limbs, etc), I know there will be grace to respond in a way that glorifies God and sustains us.

Thank you for your ongoing prayers. I hope you are assured that they are one of the more significant means of grace to us, specifically in caring for Judah. We are so grateful for you and for your prayers!!

Glasses Purchased. Onto our Teeth.

After three mornings of taking the boys out to try on glasses (boy, was that test in patience and perseverance), we decided on a pair of glasses for Judah. It was quite a different experience finding glasses for Judah than it is finding glasses for Lawrence or myself.

We try on many pairs of glasses, and the ultimate deciding factor is appearance. Do I look good? :) For Judah, if we could get the glasses to stay on his face for even 2 seconds just to see if they fit, we were doing well. Appearance wasn't really a factor at all.

Do the glasses fit his head and eye size? Do the glasses have flexible rims and arms so as to make them as nearly indestructible as possible? And, finally, are these the most inexpensive pair we've looked at that match the other criteria as well? I can't even tell you what the glasses look like on Judah, but hopefully I will soon!

The glasses are ordered, and when they come in and Judah gets some practice wearing them, I'll see if I can post a photo for you to see my little cutie in his new specs.

This week, Judah and Tucker are going to the dentist. Judah hasn't yet had oral issues, but it's something we want to stay on top of as the PWS is present in his mouth, gums and tongue. He's got a full set of teeth and a beautiful smile that is unmatched by anyone in my opinion.

Please pray that:

• the boys cooperate for the dentist visit, letting the hygenist clean their teeth and brush flouride on them.
• the boys' teeth and gums look healthy, and mom leaves assured she's praciticing good oral hygeine with her boys.
• our dentist, who is familiar with Sturge Weber Syndrome and works with kids with special dental needs, will anticipate and help us stave off any potential dental/oral problems Judah might have related to his SWS.

Thanks!

The Hunt is On!

Today I braved the first hunting trip alone with both boys in tow. The hunting trip is for Judah's glasses. I figured it wouldn't be easy; I didn't think I'd have both boys crying by the time it was all said and done. I thought it wasn't the most ideal situation to take them by myself, but knew there would be grace to remain patient and grateful.

We think we found one pair of glasses that might work for Judah, but I only went to one Optical Center. There is one more Optical Center I want to try that takes our insurance. Depending on prices there, I may try other places where our insurance is not accepted to see if by chance we can find anything less expensive even without our insurance discounts.

It may sound trivial, but we would appreciate your prayers for a pair of glasses for Judah. Fit is important. Durability is equally if not more important! Cost is a factor, too. These are the "little" things where God has consistently proven Himself faithful and gracious. While I can look at this hunt for glasses as an inconvenience, I would rather view it as an opportunity for God to enter our world, even in what may be a trivial thing: finding a pair of glasses.

Glasses? Yes

Thanks to all of you who prayed for Judah's eye appointment. My most gnawing anxiety prior to the appointment was not as much that he might need glasses as it was he wouldn't cooperate for the exam.

We arrived early to our appointment, which rarely if ever happens, and Judah was a champ, having to wait a half hour in the waiting room to be seen. He sat up in his own chair, read a book and played with his cars. If I was an onlooker, I might have thought, "wow, what a good mom she must be." But, as the mom I know the truth is, "what a good boy I have". Actually, there are plenty of times when he doesn't behave so well, so really the truth is that God was just kind to both of us this morning.

When we were finally seen, Judah sat rather timidly on my lap as the Dr's assistant, Jana, evaluated how well he tracked with each individual eye. He never really likes this part, but I could tell there was a little more than the usual apprehension in him today. Lawrence and I think he was trying to figure out if this was another laser treatment. He just had a laser treatment two weeks ago, and it was a rather traumatic visit.

Things were going fine until Jana accidentally shocked him with her finger, which I'm guessing is all it took to confirm in Judah's mind that, yes, this was a laser treatment. It was like a dam had opened its gates, as Judah just started to wail. Needless to say, the first half of the exam came to a screeching halt.

Judah calmed down in time for Dr's Abrams to come into examine him. She brought her big case full of lenses, opened it up, and after ritualistically giving Judah his own lens to play with, began to hold the lenses up to his eye, one at a time, to determine a prescription for him. This is the part that Judah needs to hold still.

An odd combination of listening to our wonderful and very child-oriented doctor sing "Old McDonald" and watching "Finding Nemo" on the little TV screen they have in the office kept Judah perfectly still long enough for Dr. Abrams to get a prescription for his eyes. She did determine that Judah would benefit from glasses.

So, the hunt begins for a pair of specs. for my little man. And then, the real challenges: having Judah keep them on his face and keeping Tucker from ripping them off Judah's face. If my hubby agrees, I'll see if I can post a picture of Judah in his glasses once we have them.

Thanks for praying. Judah did sit still, and even though he does need glasses, I'm so grateful for the kindness of God that we live in a time and are among those privileged to afford such things beneficial to our overall health. Judah really is a blessed little man, and his family is equally blessed, too!

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!