"Happy To You"

That is a sweet little phrase my boys say whenever they see a candle of any kind. For the longest time, they couldn't get the "birthday" into the phrase and would instead just say, "Happy to you; happy to you". (They do not know how to say anything just one time either; everything comes out at least twice, usually many more times than that before I acknowledge that they said something.)

Amazingly they began to say the entire phrase this week, "Happy Birthday to You!!" So, yesterday after they brought home their homemade Christmas tree ornament that was a little baby Jesus wrapped in swaddling clothes, otherwise known as paper plates, I decided I would begin to raise their anticipation for whose birthday we celebrate during Christmas. After a little instruction, I asked them repeatedly today, "Whose birthday do we celebrate for Christmas, boys?" After stating the question a variety of ways, one and eventually both of them would say, "Happy Birthday Jesus". After putting them to bed tonight, we could hear them "singing" through the monitor, "Happy Birthday Jesus; Happy Birthday Jesus."

Gearing up for Christmas has been thorougly enjoyable with the boys this year. We see that they can grasp so much more of the true meaning of Christmas, a little baby come to earth from Heaven to save mankind from their sins. We give thanks daily that God has placed our boys in a gospel-centered home and a gospel-centered church.

Today we enjoyed a long visit to the park. It was so beautiful outside, I couldn't resist taking the boys outside for some fresh air even with all there is to do at home right now. It was like a spring day, and while many may not like these tricks "Mother Nature" plays on us sometimes, giving us spring when it's winter, I really appreciate it, and the boys loved their time at the park as well.

This Friday, I will be taking Judah to Hopkins to invite yet another specialist into his care. We will be having an initial consultation with a plastic surgeon to discuss Judah's jaw bone growth and facial assymetry. It seems that since his dentist said something about the more pronounced assymetry on his face, I think the hypertrophy (swelling) on the one side of his face is worsening. But, this could be my imagination, having my perspective a bit more influenced by the dentist's comment and recommendation to see an oral surgeon. So, we'll see. I don't know much what to expect from this consultation and therefore know little how to ask you to pray.

I would say, pray that:

• we are seen promptly by the doctor, Dr. Tufaro.
• I ask good questions and guard my heart from fear regarding the answers or lack of answers we receive from the doctor.
• Judah cooperates with any potential evaluation the doctor may want to do at the visit.
• Tucker does well for his sitter.
• Lawrence and I will continue to receive wisdom on how to best manage Judah's care, i.e. what specialist to see next, what treatments to pursue and what ones to wait on, what potential studies to participate in, etc.

Thanks so much and MERRY CHRISTMAS!!

Update from last week's appointments

The boys did great with their flu shots. My mother in law went with us, and it is always helpful to have a second pair of comforting arms for shots. Their injection sites got a bit red and swollen, but that was the only noticeable side effect.

My OB appointment was rather uneventful. The doctor who delivered the boys via C-section spoke with me about having a VBAC. He didn't feel strongly one way or the other as to what would be best in my case. Because I feel somewhat ambivalent about the decision (very unlike me to be ambivalent about anything), he recommended I take a poll of friends and family to see what they think regarding whether to schedule another C-section or to try for a VBAC. I am doing that, and we are continuing to pray that God would make it clear. We would appreciate your continued prayers for us in regards to this decision.

As for Judah's laser treatment, it went as well as we can expect at this point. Judah held off crying until he got into the room and I began to take his shirt off. Until then, he was really trying to hold it together to keep himself from crying. I was very proud of my little guy! Dr. Cohen lasered his upper right trunk, back and upper arm. Judah has some red spots, but not any terrible bruising or blisters from it. I am grateful for that.
We have one more laser treatment scheduled before the baby arrives to be done on Judah's face. I may or may not keep this appointment depending on how things are going with the pregnancy. But, we would like to try to get one more in before the baby arrives as we will most likely have to take a little bit of a break in order to adjust to caring for another child in our home as well as enduring the long hours of Lawrence's busy season at work.

Over the weekend, we took the boys to Longwood Gardens in Pennsylvania to see an amazing display of Christmas lights, floral arrangements and beautifully decorated Christmas trees. They did rather well with the cold and overall seemed to really enjoy the lights. Their favorite part (and mine, too) was the fountain that coordinates its numerous sprays of water to holiday music selections. We stopped at this first and last on our trip through the gardens. If you live in the area, I would highly recommend making a trip to Longwood Gardens as a part of your Christmas celebrations one year. It is worth the money and effort to see such an amazing display of God's creativity manifested through man's ingenuity and hard work.

This week, Lawrence is gearing up for another out of town trip to D.C. I am hoping to attend this one with him, more for a little rest and re-envisioning for myself than a get away with him; although, we will appreciate any amount of one on one time we'll get these two short days away. However, the boys seem to be on the brink of a cold which ironically is always the case when Lawrence and I attempt to go away overnight together. We're always faced with the dilemna of whether to have me stay home or not. Given their history with asthma complications, it makes this decision a laborious one for us. We'd greatly appreciate your prayers in regard to this. We are trying to learn how to sincerely give thanks rather than grumble and become perplexed when we face trials of many kinds as they seek to produce steadfastness and maturity in us (James 1:2-4).

I'd love to read about any ways you or your family are enjoying this Christmas season or to pray for you about anything that is keeping you from fully celebrating the coming of our Immanuel this season. Please comment or email me and let me know.

The Low Down This Week

Briefly, we're rather booked with dr's appointments this week.

Tuesday: The boys get flu shots. Pray for no adverse reactions and protection from the flu this season.

Wednesday: I have an OB appointment for a check up and a discussion about the possibility of a VBAC. Pray for health for me and the baby and that God would give us wisdom as to whether to elect a C-section or try for a VBAC.

Friday: Judah has a laser treatment. Pray Tucker sleeps well at his sitter's, and that the laser treatment is quick and effective.

And, a very busy weekend! But, whose weekends aren't busy in December?
I will try to update you on these appointments next week.

This Day

This morning I opened up a book entitled Valley of Vision, A collection of Puritan Prayers and Devotions. I've read from this book many times before, but today my attention was drawn to a piece of yellow stenopad paper I had placed in there as a bookmark, a very memorable piece of paper. Looking at the paper took me immediately back to August 5, 2004, two days after the boys were born. This paper was written on and given to Lawrence and me by the boys' pediatrician. On it is written these words:

Sturge Weber Syndrome
facial hemangioma
glaucoma
intracranial (brain)
angiomas --calcification leading to retardation and seizures

That was the explanation and description provided to us just shortly after Judah was born regarding the Port Wine Stain that covered most of his tiny, little body.

I am glad that I saved this piece of paper and even moreso, that I found it today in this book. It serves as a constant reminder to me of how faithful God has been to me and my family. We have experienced some of the above mentioned manifestations of SWS, but we haven't experienced all of them. God has graciously spared us thus far of seizures and any apparent brain involvement which would lead to developmental delays or retardation.

This morning in my devotional time with the Lord, He highlighted these phrases for me concerning trial: for a little while (I Peter 1:6, 5:10) and light and momentary (II Corinthians 4:17). I thought that many of our trials often do not feel light and momentary nor that they are only for a little while, but this is how God's Word describes them. How can that be so? The Bible tells us that they are light and momentary compared to the eternal glory they are achieving for us (II Corinthians 4:17) and compared to the inheritance that is waiting for us in Heaven, an inheritance that will never perish, spoil or fade (I Peter 1:4).

Taking you back to Valley of Vision from which I prayed some of my prayers this morning, there was one particular line in the prayer that I'm holding onto for myself today and passing onto you today.

This day will bring me nearer home...

I pray that it will put a smile on your face, provide peace in the midst of any storm you find yourself in and motivation to glorify God by giving thanks that He does ALL things well.
____________________________________________________________

As for Judah and any updates:
Both of my boys are dealing with asthma currently. Tucker started first and Judah followed quickly behind with symptoms, which is oddly enough a typical pattern for them. We were not able to get Tucker's asthma under control via nebulizer treatments alone, and so he ended up on an oral steroid. While we greatly try to avoid getting to that point in their treatment, we are very grateful that it works and significantly helps to stabalize their breathing. So far, we've been able to manage Judah's asthma with just the nebulizer treatments of an inhaled steroid called Pulmicort and another medication called Albuterol, which makes their poor, little hearts race. As a result, the boys have been quite a handful to manage behaviorly.

Please pray that:

• Judah will begin to show more signs of progress with his breathing and that we'll be able to decrease the amount of Albuterol treatments we have to give him in a day to eventually none at all.
• Tucker will not digress once he's finished with the oral steroid.
• the boys will fare well while away this coming week to my parents in Pennsylvania.
• we will have wisdom on how to best control their asthma so that we're not finding ourselves going from one episode to another this winter.

Thanks!

Sorry for the delay

I just re-read my post from two Monday's ago and realized I said that I would update the blog by last Monday and failed to carry through. Sorry! Things sometimes get a bit over my head here or I just forget. I live in that pregnancy fog these days. My husband has now learned that he cannot count on me to remember anything, which at times works to his advantage. :)

As for Judah's eye appointment, thank you for praying. Apart from him crying when his doctor, outfitted as Daphne from "Scoobie Doo", donned with a flaming orange wig and bright pink knee-high boots, came to get him, he did rather well.

Judah really blew me away with the maturity he demonstrated on this visit. He did things that he's never done before. He amazed both Dr. Abrams and myself by taking his first vision test using the letters up on the screen. He correctly identified every letter flashed infront of him (the ones he could see, of course). Our doctor said she's never had a 2 year old boy identify alphabet letters like that before. My son's a genius, and yes, I am a boasting momma! :) He also sat his little chin up in that machine (I have no idea what it's called, but if you've ever had an eye exam, you know what I'm talking about) for the doctor to take a look into his eyes. He even allowed Dr. Abrams, upon my request, to spray numbing drops in his eyes to see if we could get his pressures read. This is the part of the exam we haven't done since he was an infant but instead have him put under anesthesia for because it is typically so traumatic, and young children tend to not cooperate real well.

We didn't get any valid pressures read, but Judah was brave, allowing Dr. Abrams to try. She didn't push real hard to get the pressures because Judah is still really young to cooperate for this procedure. She was hopeful, however, that if we keep exposing him to little "trials" each time we visit her, he may be ready sooner than most to undergo that part of the exam without anesthesia. That would be GREAT! It would mean less trips to Hopkins, less trips to the OR for anesthesia, etc. So, I was thrilled with his progress.

While Judah's optic nerves looked like they were in good condition, Dr. Abrams did find a change in his vision, significant enough to order a new set of lenses. So, after only 7 months in his first set of glasses, we had to order new lenses. Fortunately, we were able to keep the frames and just switch out the lenses as buying new frames would have meant more cost, cost that we were not expecting in the first place. God revealed Himself even in that, though, as the initial price quoted to me ended up being wrong. I was called the day after we ordered his lenses and told that they had overcharged me $40. So, while initially I was tempted to become anxious about this unexpected expense, God allowed circumstances to happen in such a way that I actually found reason to give thanks, thinking He had "saved" us $40.

Ongoing, we are still praying about and watching Judah's growth. Please continue to pray that Judah will grow adequately in the next three months and have no need for the growth hormone deficiency tests. I also need to contact an oral surgeon promptly about seeing Judah for an initial consultation. We have decided to go with the surgeon at Hopkins and trust that God will supply grace and provision for the extra distance and inconvenience of having to travel down to the city as opposed to right up the road to a more local oral surgeon.

Please pray that God will give wisdom to us regarding when to schedule this appointment. Just to give you a glimpse into our world, I already have dr's appointments on our calendar for Jan., March and April of 2007. The only reason I didn't schedule any for February is because I'm scheduled to have our third baby that month! :) So, I figured I would try not to overbook! As you can imagine, with the holidays already upon us, trying to fit in any more doctor's appointments to what we already have scheduled for this month or next is somewhat of a scheduling nightmare. Yet, I want to make sure I'm giving priority to what needs to be made so. You can pray that God will make that clear to us as it regards specifically this initial consultation with an oral surgeon.

You have no reason or motivation to continue to carry us on your hearts and in your prayers a part from the love of Christ. Your prayers, your encouragement and for some of you who God enables, your practical help are all tangible ways you help us bear our burdens, and we are so grateful to God for you!

What a Trooper!

Last week's EEG went rather well in most respects. Judah was such a trooper, not crying and sitting incredibly well through a rather lengthy process of securing all the electrodes to his head for his EEG. I probably was more impatient with the technician administering the EEG than Judah was! I wish I could post the picture I have of Judah on my phone. His head was wrapped in two rolls of gauze, secured with two rolls of medical tape. It was definitely overkill on the securing of the electrodes. Nevertheless, Judah managed to fall asleep nearly on cue, probably due to the sheer weight of his poor head! And, I believe the tech. was satisfied with the test. I will probably hear about the results this week.

As for Judah's neuro. eval., the main concern raised was his growth. After measuring Judah, it became clear that further follow up is necessary. I agreed to have him weighed and measured in another three months and go from there. The potential is that Judah will have to go through some tests to determine if there is a growth hormone deficiency. The tests involve bloodwork, an x-ray of his hand, and some other test that stimulates his pituitary gland to release growth hormone. The treatment for growth hormone deficiency is to receive shots of growth hormone. How frequently? I don't know. How much? I don't know. I have chosen not to worry about those things until I have to. I'm not really all that excited about the possibility of having to subject Judah to yet one more thing, let alone the unknown side effects of receiving injections of growth hormone.

Please pray that Judah will grow sufficiently in the next three months, particularly in his height, and that there will be no need to even have the growth hormone tests done.

Tuesday, I am taking Judah for a follow up opthamological exam. He has been doing much better sitting for these exams. Pray that he will sit well for this exam and that Dr. Abrams will see all she needs to see with no reason for concern. This may sound strange, but because I know the staff will be dressed up for Halloween (no ugly, scary costumes...just kid friendly costumes; I've already asked), pray that Judah will not be scared or alarmed by their costumes and make our visit ineffective.

Finally, you can always pray for Tucker's sitter. My friend, Marie, will be watching Tucker tomorrow, and she already has two toddlers of her own with a third baby due in December! I have GREAT friends, but I always want to ask others to be praying for God to bless them as they serve me and my family tirelessly with these doctors appointments.

Thanks again for your prayers, and I will be sure to update next Monday if not before on how the eye appointment goes for us tomorrow.

EEG/Neurological Evaluation

This Thursday Judah will have what I believe is his last EEG from the study he's participated in from birth. I think it'll be his 8th EEG. For the last seven EEG's, we've been able to celebrate and give thanks to God for a good report. We are, of course, praying and asking you to pray that this 8th EEG will again show that Judah's brain is functioning as it should, and that there are no signs of SWS involvement in his brain. There may be future EEG's as a way to continue to follow up with any possible new developments, but I'm hoping they won't be quite as frequent as the ones we've done for this study.

We will also be seeing Judah's neurologist who will give him a general evaluation as well. There are some matters to discuss with her, and I need God's wisdom to guide me. The first issue is that of his growth. Upon Judah's last routine pediatric visit, it was noted that he fell off his growth curve in both weight and height. This is of some concern as it has been observed that there are higher percentages of growth hormone deficiency among Sturge-Weber patients than there are in the general population.

The second thing I need to discuss with Dr. Comi, Judah's neuro., concerns an oral surgeon for Judah. Judah's dentist recently recommended that Judah have an initial consultation and be followed long term by an oral surgeon for the purpose of watching, and intervening if necessary, Judah's jaw bone growth and joints in that area. She referred us to someone specifically who happens to be right up the road: very convenient. However, upon discussing this with Judah's neurologist and asking for her input, she recommended an oral surgeon at Hopkins who the SWS team at Hopkins has great confidence in as well. He is apparently already following and treating at least one other SWS patient and has had much success with this child.

I am grateful that there is even this kind of care available for Judah, but am now faced with the decision of what/who is best. I have recently been made aware by the kindness of God through His Spirit that I have neglected to pray about many of the more recent decisions regarding Judah's health and dr. follow ups. I have simply filled every prescription written, made every appointment recommended for follow up, and acquired every referral deemed necessary by his doctors. This leaves me feeling like a hampster in an exercise ball, unnecessarily running like crazy without getting very far.

My intention is never to withhold the medical care needed for Judah's well being. I just want to be consulting the One who is Judah's Creator and Sustainer and find out from Him what doctor's appointments to make and keep, what prescriptions to fill and administer and what tests, procedures and new specialists to pursue.

Please pray that:

• Judah will have grown sufficiently enough to not require further follow up on the growth issue and that there will be no growth hormone deficiency.
• Judah will cooperate with the lengthy process of having the EEG electrodes placed all over his head and then fall asleep for the technician to get a good read from him.
• Judah's EEG will show no signs of SWS involvement in his brain.
• God will give us wisdom to know what oral surgeon to choose for Judah's care.
• We will grow not only in consulting God first regarding Judah's care but also in confidence of what we hear from God and that He will provide all that we need for Judah to receive the best of care.

Thank you for your specific, persistent prayers on our behalf.

Our Mission Field

Recently, I finished a book called, "God's Smuggler", a biography about Brother Andrew and the work he did in smuggling Bibles into Communist countries. I moved on from that book to "Tramp for the Lord", the continuing story of Corrie Ten Boom after she was released from the concentration camp about which "The Hiding Place" was written.

The accounts of these two lives has reminded me of days not so long ago when I not only drempt about but strongly felt God calling me into the mission field. I did take what I saw as the beginning steps toward a life serving full time in missions by working with Campus Crusade for Christ for two years at Towson University. I assumed that eventually I might find myself overseas, specifically China, living out a single life devoted to spreading the gospel, giving up whatever was necessary including my dream of marriage and motherhood, in order to serve eternal purposes. I was sure my life would resemble that of Gladys Alward or Amy Carmichael. However, as I'm finding to be the case more often than not, God had different plans than I once assumed.

Those plans included me leaving my position with Campus Crusade for Christ, planting myself in a local church, marrying and having children, among other things. This husband of mine surprised me on Friday by coming home mid-day to accompany me to Judah's laser treatment. On our car ride down to Hopkins, Lawrence and I began talking about some things, and among those things was church planting. When Lawrence and I were first married, church planting was often a topic of discussion between the two of us. I think back then, I viewed church planting as the avenue God would use to re-direct all the dreams I had as a single for speading the gospel as a missionary. However, when the boys were born and we began to understand all that Judah's syndrome may entail and require from us, I unconsciously removed us from the church planter's list. Inadvertantly, I also began to let go of those dreams of being used for the eternal purposes of spreading the gospel through any mission field.

While conversing with my husband on our trip to Hopkins on Friday, I began to articulate some of these sentiments to him. My husband, along with the Holy Spirit's help, graciously pointed out to me that God has not removed me from a mission field; He's just given me one that I did not ask for or necessarily view as the mission field for me. The hospital, doctors, sick people, the suffering: NOT what or who I envisioned to be my mission field. But, on this trip to Hopkins, the words from this worship song rang in my heart and brought tears to my eyes as I began to allow the Lord to change my visions and dreams for being used by Him in, of all places, a hospital clinic.

Your glorious cause, O God, engages our hearts
May Jesus Christ be known wherever we are
We ask not for ourselves but for Your renown
The cross has saved us so we pray
Your kingdom come

Let your kingdom come
Let your will be done
So that everyone might know Your name
Let Your song be heard everywhere on earth
Till Your Sovereign work on earth is done
Let Your kingdom come

Give us Your strength, O God, and courage to speak
Perform Your wondrous deeds
Through those who are weak
Lord use us as You want, whatever the test
By grace we'll preach Your gospel
Till our dying breath.
(Bob Kauflin, 2006
Sovereign Grace Praise (BMI)

I'm not sure why I ever felt equipped or able to handle a foreign mission field other than a really bad combination of ignorance and pride. But, to respond to what appears to be an actual call to unsaved doctors, patients, parents of sick children can at times overwhelm me. I do feel so inadequate to be light in this darkness, the one who speaks a timely word of encouragement or sings songs of praise to Judah's Creator when his body does not function normally. But, here is a good a place to be, the place of desperation, the place where only if Christ's power rests on me will there be any fruit, the place where I can truly be used of Him for eternal purposes.

What a glorious cause, O Lord!

As for the specifics of Judah's treatment: apart from screaming bloody murder as soon as we walked down the hallway toward the laser room and all throughout the treatment, Judah did remarkably well with this treatment. He allowed me to apply the numbing cream to his face without throwing too much of a fit, and he did not bruise or blister at all this time. I was so grateful for that.

I will not stop saying thank you to all of you who pray because I know your prayers are availing much on our behalf: not just Judah's physical good, but our spiritual well being as well. We are ever grateful for the good work God is accomplishing in our lives through Judah's SWS, and we are confident that much of it is accomplished through your prayers!

Laser Treatment

I've had so many thoughts for a post here in the last couple of weeks, many prompted by the sufferings of others, some who are so dear to my heart, some of whom I don't even know. But, mothering toddler twin boys and being pregnant with our third has sapped me of the brain cells required to put together a thoughtful, encouraging post.

So, instead, I'm writing again, after a couple weeks hiatus, to let ya'll know about an upcoming appointment. Judah is scheduled to have a laser treatment this Friday. We have not done a laser treatment for several months, and I am tempted to be rather anxious about it. At best, I am not looking forward to it at all.

Please pray:

• Tucker will sleep well for his sitter and be pleasant and obedient to her when he wakes up. He is staying with a friend who has two boys of her own under 3 and a newborn baby girl.
• Judah will allow us to apply the numbing cream to his face without too much fuss or thrashing about.
• Judah will fall asleep and have a little bit of a nap before he goes for his treatment.
• The laser treatment would go quickly and smoothly, and be effective while leaving minimal bruising/blisters.
• All insurance matters would be squared away before Friday.

Thanks for continuing on with us in this journey through your prayers.

Tagged

There have been so many other things I've wanted to post lately, but as this does not require many brain cells, I decided to go ahead and do it. Plus, I've enjoyed reading others so much that I had to add to the fun!

FIRST NAME: Briana, which means "strong"(willed, odor, character? The jury is still out).

WERE YOU NAMED AFTER ANYONE? No

YOUR FAVORITE LUNCHMEAT? I don't really care for lunchmeat, but pinned to the wall: turkey.

DO YOU HAVE A JOURNAL? Yes. The last time I wrote in it? ???

YOUR FAVORITE CEREAL? I'm with Kate on this one as I LOVE breakfast cereals. Currently, I'm eating Frosted Mini Wheats. Did you know they have 90% of one's daily values for Iron?

YOUR FAVORITE ICE CREAM FLAVOR? Depends on my mood.

RED OR PINK? pink

YOUR LEAST FAVORITE THING ABOUT YOURSELF? outward: my sagging bum and thigh cheese. Inward: my tendency to complain, be critical and angry, especially with my spouse.

WHAT COLOR PANTS AND SHOES ARE YOU WEARING? jeans and pink top with a zipped up sweater. It's cold today!

IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE? Have no clue, but I'll say sage for my earthy side.

FAVORITE SMELL? my boys' breaths after they wake up from their naps. Strange but true.

FAVORITE DRINK? again, depends on my mood...am I moody or what? hot herbal teas, particularly ginger peach or peppermint, hot choc. w/ lots of marshmallows, diet coke, and a good lager beer believe it or not. Typically, though, I just drink water.

HAT SIZE? who knows, but I do like wearing hats.

FAVORITE FOOD? Anything someone else makes. Recently, I've been enjoying baked oatmeal, apple dumplings and grilled peanut butter and jelly (not all at one sitting).

SUMMER OR WINTER? fall

FAVORITE SOUNDS? my boys' little toddler voices and giggles. And, the sound of the front door opening at the end of the day indicating my husband is home.

THE FURTHEST YOU’VE BEEN FROM HOME? China

WHAT’S YOUR SPECIAL TALENT? Perhaps a flare for drama!

WHEN AND WHERE WERE YOU BORN? October 15th, Allentown, Pennsylvania.

Chronic Sorrow

In a book we received from the Sturge Weber Foundation shortly after Judah was born they define something called "chronic sorrow":

In chronic sorrow, parents experience swings in emotion that are characterized by periodic recurrences of pain and sadness, which are precipitated when they are forced to recognize that their child is abnormal. The parents are then able to put their grief aside only with the help of denial and the turning of their attention to the day-to-day business of taking care of the child. The pain subsides until the next episode of realization is forced upon them by some seemingly trivial daily occurrence, such as seeing a normal child of similar age playing the in the park.

We weren't at the park but the dentist office this morning when one of those swings of emotion hit me once again. The truth that, apart from miraculous healing, Judah will always have some health concern we are investigating or treating continues to try to forge its way into my acceptance.

I don't necessarily see it as accepting my son as "abnormal" but rather accepting the lot God has given to him and to us as good and pleasing in His sight. It's an acceptance that Judah's life, because it was established by God and his SWS ordained by God as well, could not be any better than what it is. It's an acceptance of God's Sovereign will that is attached to my and Judah's good and therefore means that Judah didn't get a "raw deal" but is experiencing God's kindness and mercy even in and through his SWS.

I can't begin to tell you how much this confronts a cultural mindset and worldview I've so readily embraced that tells me Judah is missing out on life, that we're missing out on life and that things would be better if we just didn't have to deal with SWS.

I haven't gotten much done today in one sense. Laundry has gone unattended, our bed sloppily made, the kitchen floor unmopped and living room floor un-vacuumed with guests coming tonight. Instead, I've spent most of the day and my energy in this mental, spiritual and emotional process of acceptance, and even moreso, a process of renewing my mind. I don't think I've slipped into self-pity; although I am prone to it and constantly need to be on guard that it does not get its grip on me. It's more like "re-programming" my mind and my heart to respond to our circumstances in a way that reflects God's truth about who He is, who we are, what He promises in His Word as well as requires from us, and what our lives are all about.

Here are a few scriptures to help me in this process:

Romans 8:28
And we know that for those who love God all things work together for good, for those who are called according to his purpose.

Psalm 18:30
As for God, His way is perfect...

Romans 11:33-36
Oh, the depths of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out! Who has known the mind of the Lord? Or who has been His counselor? Who has ever given to God, that God should repay him? For from Him and through Him and to Him are all things. To Him be glory forever! Amen.
(*thanks, Beth, for reminding me of this one this week!)

One that I have been most impressed with lately comes from II Corinthians 4:17, 18
For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

What we have endured and will endure because of Judah's SWS will not be worth comparing to the glory of God shone in and through us on the other side of this 'short' life. I accept that by faith for, "...faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1

So, I am given another opportunity to do something more glorious than grieve that my child is "abnormal" and that our lives are hard. I am given the opportunity to by faith have my mind renewed by God's truth and His Spirit and to grow more certain of His goodness and His perfect plan for my son and for my family.

Please continue to pray for us in this struggle. Trying to embrace God's way of thinking through and emotionally responding to trial is hard. I have cried a number of times today. I have had to check my emotions again and again to see if they line up with God's Word. It is not easy. I want to give into self-pity, anger, confusion and despair often. Many times, I do. But, I know that is not God's desire for us in this. I know He wants us to walk in joy, peace and confidence of His goodness no matter what may come.

Updates

An update on Judah's eyes:

Judah's usual opthamologist, Dr. Abrams, decided it was best for her to examine Judah's eyes to clarify what the glaucoma surgeon saw. I took him for an appointment last Wednesday, and she found no reason for concern. She said his one optic nerve does look 'congested', but that appearance could be a result of the hemangioma being more prominent on that side of his face. Nevertheless, it was good news and I thanked God that we weren't going to be sent into "emergency mode" once again.

Pampered Chef party: Huge Success!

Lawrence and I are so very grateful for the amazing response I had to the Pampered Chef party. There were 22 women in my home Friday night! Several women who weren't able to attend ordered on line or through the catalogue. A handful of you have commented that you are going to place an order this week. And, still others offered simply to make a donation right to the Sturge Weber Foundation. All of that adds up to what Lawrence and I estimate to be a $400-$500 donation to the SWF!! We are so blessed by everyone's generosity and excited about the success of our first initiative toward 'giving back' to an organization that has given so much to us!
**If you still want to place an order with Pampered Chef (you can see instructions on how to do this on line if you scroll down to a post I entitled, 'An Invitation'.) or give a flat donation to the Sturge Weber Foundation, please do so by the end of this week, September 23rd. Thanks!

Allergies, Asthma and A Tired Momma:

Just when I thought I would be able to take a breather, Tucker started with bad allergies and asthma this weekend. Thankfully, we were able to keep him out of the ER and off the oral steroid by giving him nebulizer treatments every 2.5/3 hours on Friday and Saturday. He seems to be doing better with the asthma, but he and Judah both are very congested. I am unable to discern for Judah whether it is allergies or a cold.

So, I find myself once again at God's mercy to know how to care for my little men. Of all the medical issues we have dealt with in the boys, their asthma causes me the greatest amount of stress and anxiety. I was grateful to be reminded by a friend yesterday of this line from a familiar worship song, "Creator, Giver of Grace, Sustainer or Infants and Kings..." I am grateful that it is God who sustains Judah and Tucker's lives, and I'm seeking to put to rest my anxious mind in this truth.

Baby #3



Our week wasn't busy enough, so we threw in a sonogram, too! It was great to see the little baby as I occasionally forget that I'm pregnant. It's so different carrying just one; the movement is so much more slight than with the boys who I often felt were having a boxing match inside! All body parts were present and from what the sonographer could tell, looked healthy. The only part he couldn't get a good look at was the one we most wanted to see! His best guess is a girl, but he couldn't be sure given the poor positioning of the baby for determining gender. Unlike with the boys, I will probably not go back for another sonogram. SO, we will have to wait and be surprised! Just like almost anything else in life, Lawrence and I have opposing preferences for the sex of this baby. I would like a girl, and he would like another boy! I guess at least one of us will be pleasantly surprised in another 20 weeks! :) I'm sure we'll both love the little one no matter its gender.

Please continue to pray for:

• health for me and the baby.
• freedom from allergies, colds and asthma for the boys.

Feel free to suggest any girl names for us to consider. We think we have the boy's name settled, but the girl's name is still up in the air.

EUA Results

Thank you to all who prayed for us yesterday. We arrived at Hopkins by 6 a.m. and amazingly were home by 10:30. Really, for non-hospital goers, this is a 'quick' trip to the hospital, especially considering Judah was put under while there!

Judah did great w/ anesthesia apart from waking up in the middle of the night last night with some choking cough that was making it difficult for him to breathe. I'm not sure what precipitated it, but he usually has irritation in his throat after he's been under anesthesia and especially when he has a cold or has just gotten over a cold, which was the case yesterday. Nevertheless, after two different asthma meds. given through the nebulizer and a half hour of watching him sleep in our bed, Judah was calmed down enough to go back to his bed for the rest of the night. He seems to be doing much better today.

The doctor who performed the EUA yesterday was new to Judah's case. He had never seen Judah prior to yesterday, and there was some confusion as to his findings during his exam. Dr. Jampel, our new glaucoma doctor, saw swelling on Judah's optic nerves. We explained that swelling on the optic nerve is what precipitated Judah's brain surgery back in May. Dr. Jampel, not having anything to compare with, wondered if the swelling he saw is actually improvement from the swelling months ago, or if it's an indicator of increased Intracranial pressure meaning the shunt may be malfunctioning or not set properly, or if it's an indicator of something strictly involving Judah's eyes.

So, we left under a cloud of confusion and not knowing whether his findings were something that needed further testing or not. That leaves me on the phone or otherwise trying to communicate with three of Judah's doctors. Anyone ever try to reach a doctor directly over the phone? Not so easy. Try reaching three and then getting them to communicate to each other! :)

Otherwise, Dr. Jampel was comfortable with what he saw regarding Judah's pressures and said there were no signs of damage to the optic nerve and therefore, no need for surgery at this time. That was good news!

We are trying to grow comfortable with the fact that things with Judah will to some degree always be under a cloud of confusion. Sturge Weber Syndrome is a complicated thing, involving many systems of the body and therefore many specialists poking, prodding, assessing, diagnosing and treating. Even though we see some of the best doctors in the nation at Hopkins, their knowledge is still limited, and much is still unknown about SWS.

I am easily tempted to be overwhelmed by the weight of managing Judah's care at times, and this for a child who for all intents and purposes appears to be doing rather well. In the face of this temptation, though, I am given an opportunity to again and again look to Judah's Creator, affirm that Judah was fearfully and wonderfully made by His loving hands, and trust that what is impossible for man is possible for God. I am given the opportunity to pray and depend and trust and wait and see God reveal His power and glory as He works out His good plan for my son and for me and my family.

And, I know I am not alone. I am too well acquainted with others, like my dear friend, Emily, mom to sweet Livi, who also faces these same temptations but also the same opportunities to lean hard on God's truths. It is not what we would choose, but we do know it is what God will use for our good and His glory. And, we're trying to draw comfort and strength from that knowledge.

Thanks for your prayers on our behalf to this end.

Another EUA

A bit last minute, but anyone who reads on Monday, would you please pray for Judah today? He is going in for an EUA (evaluation under anesthesia) on his eyes. He has not had one since January because the surgeon who has always done these for Judah left Hopkins rather abruptly. So, between that change and Judah's brain surgery in May, we had not scheduled another EUA until now.

I am faced once again with the choice that I face each time we take Judah in for any type of evaluation: 1. be anxious over many things or 2. seek the opportunity it affords to trust God and to entrust my son to God's mercy and care. God has always been so good to us through each procedure and proven His faithfulness time and time again which hasn't always or even often meant "easy" to get through. Nevertheless, I can waver in my trust, a temptation I'm sure common to man. But, I want to trust God because He is trustworthy!

Please pray that:

• Judah will fare well once again with anesthesia. He is going in with some mild congestion, and the boys' asthma flared up a couple weeks ago. So, this can be cause for concern when going under anesthesia.
• Wisdom and Skill for Judah's new doctor, Dr. Jampel. While he has more experience overall with glaucoma patients than Judah's previous doctor, he has less experience with Sturge Weber patients. Apparently, the typical glaucoma surgeries are both more risky and less effective in SWS patients.
• Judah will not need surgery tomorrow but that his pressures will fall within normal ranges.
• Tucker will do well with Lawrence's mom, who will be staying with him tomorrow, as he grows more aware of the dynamics of these times when we're away from him.

I'll try to post how things go asap. Thanks for praying!

An Invitation

For all my bloggin' buddies, I want to extend an invitation. The invitation is to help me raise money for a donation to the Sturge Weber Foundation. I am doing this by throwing a Pampered Chef fundraising party. Instead of receiving any of the usual hostess benefits from hosting a party, 30% of the party's sales will go toward the Sturge Weber Foundation! I'm very excited about this opportunity to give back to an organization that has given so much to our family.

There are several ways you can participate.

1. Attend my party, September 15th at 6:50 p.m. in my home. If you need directions, give me a call. And, if you decide to come, please RSVP by September 8th.

2. If you're at a distance or are unable to attend but would still like to order something, click here to order from my consultant's website. Once at Terri's Pampered Chef site, click on "Order Products" and type in "Sturge Weber Foundation" when asked what organization you are ordering on behalf of.

3. Finally, if you simply want to make a donation directly to the Sturge Weber Foundation, click here and donate whatever amount you desire in honor of Judah Almengor.

Thanks so much for always supporting us in prayer. And, thanks for any consideration you give to supporting us through this invitation, albeit indirectly.

Always Something

The boys seemed to recover from their colds more quickly this round than ever in the past. It has me wondering if they were really colds. I am suspecting that the boys may have seasonal allergies, but there's not really any concrete way to test them at their age. So, we'll wait and try to treat symptomatically. Because the boys' congestion cleared up around the 9th day, we were able to spend some time with friends which was an unexpected treat as I was ready for isolation for two weeks.

Judah and I went to Hopkins on Friday for his CT Scan, and he did rather well with it. He still screamed as he has in the past, but it took him a little longer before he did. We actually made it all the way into the room and onto the table before he started to scream. I couldn't be in the room with him due to my pregnancy, so that was a little hard for me and I'm sure, Judah, too. We haven't heard about results, but I'm hopeful that everything is working as it should with his shunt.

This week, I had a couple dr's appointments, and we planned several play dates as well. Today, however, Tucker seems to be struggling with some asthma symptoms again. I'm rather puzzled by it all. He was up several times throughout the night, coughing from what I assumed was a post nasal drip running down the back of his throat. I wondered if it might be his 2 year molars coming through as I've noticed him sucking on his fingers which he never does. I was fairly confident this morning that it was his teeth and not another cold until he started wheezing again. So, out came the nebulizer machine again, and treatments are being doled out liberally.

I'd appreciate your prayers for healing, of course, for Tucker, but also for wisdom for Lawrence and me to know how to best serve our children with what may be allergies and ongoing asthma complications. We haven't really taken too many steps to "clear the air" so to speak in our home by having our vents professionally cleaned and buying air purifiers, buying special covers for their beds and pillows or trying different detergents. There's a long list of things a person can do to help those afflicted with asthma. There's typically cost involved in all of them. But, then again, we're spending money to buy their prescriptions. So, we need wisdom to know what avenues to pursue. And, ultimately, we have to trust God with the well-being of our children.

I'd appreciate prayer for ongoing stamina, too, as pregnancy just doesn't seem to wear well on me. I won't go into all the minor annoyances I've endured health-wise. It just seems that my body shuts down when I'm pregnant and/or nursing young babies. Some days, it becomes quite a mental challenge to stay on top of all our (the boys and mine) medicines or other recommendations our doctors have made to bring greater measures of health and well being to our bodies.

On a positive note, the baby appears to be doing well. I've had a couple visits with my midwives in between my scheduled visits for some "issues". While I'd rather not see the midwives more than once a month, it has given me the opportunity each time to hear that reassuring heart beat, and it sounds strong. I am hoping to have another sonogram in a couple weeks and to find out the gender then. If we do, we'll be sure to let you know.

Thanks for all your prayers on our behalf. We are assured even in this busy season filled with daily grievances big and small, that God's love and mercy follow us all the days of our lives.

Breathing is a Good Thing

My title comes from a fresh appreciation for the ability to breathe. Instead of a CT Scan on Friday, I was attempting to get Judah's asthma under control. He and Tucker both had cold symptoms by Tuesday of this past week, and by Thursday, I was in our pediatrician's office getting some recommendations for Tucker's apparent struggle to breathe. He has only had one other asthma episode, and ironically, it was this time last year. Both boys had pneumonia, and our doctor felt the asthma was a result of that.

Tucker has had colds in between last August and this, but not any asthma complications again until now. We have not been so fortunate with Judah, as he struggled with asthma with almost every cold he got over the last year.

They are both breathing much better today, after pumping their systems with various medications. Tucker's was managed with just the Nebulizer treatments, but Judah had to go on an oral steroid to finally get his under control. Of all the various medical issues we've had with the boys, the asthma has probably been the most stressful and anxiety producing. I'm grateful, though, that at this point, we do have enough history with it to know better how and when to respond and what works for the boys. Thank you, Lord, for medicine!!

So, my week has mostly been spent wiping snotty noses, administering nebulizer treatments, giving Tylenol in the middle of the night and comforting sick, little boys. I imagine I'll be somewhat isolated for another week yet until the boys completely recover, but I'm grateful that they are at least breathing today!! I'll take just a plain old cold over asthma any day.

Judah's CT Scan was pushed to this Friday, so we'd again appreciate your prayers for this. Thanks.

CT Scan

Just a quick post to say everything went better than expected for our trip to West Virginia. It was so wonderful to be able to see my husband and for the boys, their Papi, in the middle of the week. It would have been a long week without seeing him. Our hosts, Tommy and Beth Chase, were wonderful to us as usual. We had a great time with you and look forward to seeing you again soon!! (PS...Lawrence is scheduled to do another WV trip early fall, so you may be seeing more of us than you ever dreamed!)

The boys' truck birthday party went really well, too. We had absolutely beautiful weather for the day and both my family and Lawrence's family pitched in to help in so many ways that we didn't anticipate which made the whole thing so much less stressful for me. Other friends also helped out by making some of the yummy food we ate, and all the kids looked like they were having a lot of fun. I will try to post some pictures from the party soon.

This week, Judah has a follow up CT Scan for his head. This is to follow up on the brain surgery he had in May. It will show if the excess fluid is draining properly through the shunt as is hoped. I'm still trying to decide how to manage this appointment as it is discouraged for pregnant women to be in the room for the actual scan. I actually was in the room for two of Judah's scans back in May when I was first pregnant but didn't know it, and everything was fine. I also haven't decided what to do with Tucker yet. So, I would appreciate your prayers regarding this appointment, not only for the logistics as usual, but also that the test will show Judah's shunt to be working properly.

As always, thanks for your prayers!

"Country Road, Take Me Home"

Apart from the unexpected wait and duration of our appointment, last week's EEG/neuro. eval. went well. Judah's neuro. eval. went rather smoothly with no apparent reason for concern. Judah and I then headed to the EEG room where we waited for a while as the tech. was not informed that we were there. Once the tech. showed up, he began attaching the electrodes to Judah's head, about two or three times as many electrodes than Judah has ever had before.

Thankfully, Judah sat rather cooperatively throughout most of the tedious process. However, just as the tech. was commenting on how unusually cooperative Judah was being, Judah decided to "spas", which is not an understatement. It was as if a switch was turned off and he just lost it, decided he had had enough and wanted to lay down to take his nap. This happened three electrodes short of a complete modum. Eventually Judah fell into a deep enough sleep that we were able to get those three electrodes on his head along with heart monitors. This was the most involved EEG we've ever done with Judah, and apparently it was necessary for research purposes.

Needless to say, I didn't go to the appointment with the expectation of being there as long as we were. We left our house at 10 a.m. and did not return until 5 p.m. Nevertheless, Judah's EEG appeared normal, no evidence of seizure activity, which is what we always want to hear.

This week, I am working on getting our house cleaned for the upcoming birthday party for the boys' 2nd birthday. They turn 2 this Thursday as hard as that is to believe! I'm also gearing up for a last minute trip out of town. Lawrence left Sunday afternoon for a business trip to West Virginia. It's a week long trip, but thankfully I will be able to join up with him mid-week along with the boys. He will be visiting an office near Morgantown, WV the latter half of the week, and thankfully, I have a good friend from college along with some family who live in or near Morgantown. So, I'm packing up the boys and heading west.

You can pray for safe travels as I do not drive long distances very well. I tend to have trouble keeping my eyes open...really not a good thing. The boys are over the virus/congestion they had for two weeks, but I always get nervous when they've been in children's ministry at church that they'll come down with something new--I know this is not the most faith filled outlook, but unfortunately it's based in our history with children's ministry. So, we'd appreciate your prayers for their and my continued health as well.

Thanks!!

Developmentally on Track

Our appointment with Sue from the Infants & Toddlers program went very well. It was actually very encouraging to hear her assessment of Judah's development. She felt very comfortable with his cognitive skills and commended his verbal development. The only area of potential need was his fine motor skills, but this was not a surprise to me. I have observed that Judah is not as able or motivated to apply himself with tasks that require greater attention to his fine motor skills. Sue and I both agreed, though, that is probably more an issue of motivation than ability for Judah.

As compared to Tucker, Judah seems behind, and even according to the 'charts', he is about 2 months behind. But, it isn't a gross delay, and after submitting Judah to several kinds of tests and talking with me about my observations, we both concluded that Judah is not in need of ongoing services right now. Sue is going to be sending me some exercises and activities I can use with Judah to try to help him grow in this area and will check back with us in several months. Overall, I was grateful for her professional assessment which indicated that God truly has been merciful to my son, sparing him of the developmental delays seen in many SWS kids.

This week, Judah will have a routine EEG and neuro. eval. There will be yet another new person administering the test, hopefully one who is good with children, and there are also new guidelines for the EEG. They would like Judah to sleep for at least a portion of the test. So, please pray that they will get an acceptable EEG from Judah and that it will again indicate no concerns for any brain involvement of the SWS.

The boys are both fighting some congestion that just seems to linger. Would you please pray that they will completely heal of this soon so that they can play with their buddies once again?
Thanks.

Judah is Growing Up

Thank you to all who faithfully pray for our little man, Judah. This past Wednesday at his eye dr's appointment, he sat through nearly the entire exam without crying. It was amazing. I felt like I had a different son. We've never made it through any dr's exam without him crying, let alone screaming and thrashing about, wiggling out of my arms. Dr. Abrams was able to get a really good look at his eyes. The swelling on the optic nerves has come down significantly which is a sign that the shunt is doing its job. Thank you, Lord!!

Today, I had to take the boys to the pediatrician as both of them came down with something over the weekend: fever, congestion, and very cranky. Again, Judah sat still and quietly endured the entire exam. His brother didn't do so well, but I guess he hasn't had quite as much practice. It appears both boys are fighting some sort of virus that hopefully will work itself out of their systems soon.

We learned at our appointment today that our pediatrician, Dr. Beck, who we love, is leaving the office in Bel Air to have her own practice at a 'sister' office in Ellicott City. We've had to say goodbye to two other medical care providers of Judah's, and it is always difficult to do so. Because we rely so much upon their care and because Judah's medical needs are so varied and unusual, it is always a test of my faith in God's goodness to see another one leave.

Please pray that I will resolve in my heart to believe God is good no matter what and will trust that He will show His goodness to us in tangible ways, even through the provision of a new pediatrician.

Also, tomorrow morning, a woman from Harford County's division of Infants and Toddlers is coming to the house to observe Judah. He qualifies for an evaluation and potentially services because his syndrome is one that can involve developmental delays.

Please pray that Sue, the woman observing/evaluating Judah, will see all that she needs to see from Judah and that God will give her special discernment to determine whether or not Judah needs any sort of early intervention. Also, pray that I will guard my heart once again to not fear the worst or jump to conclusions about Judah's future should there be evidence of delays, etc.

Thanks so much for caring for our family and carrying us on your hearts through your prayers.

Our Week and the Next 30...

A part from the 2.5 hr. wait last Friday to see Dr. Carson, our follow up visit with him went well. No concerns were noted, only a short list of various activities Judah should not participate in. As much as Judah screams his head off at the sight of anyone in a white coat, he did something very cute and very endearing when Dr. Carson walked in to see him. I guess Dr. Carson figured he wouldn't even look at Judah let alone touch him if he didn't need to, but reached out his hand instead to shake mine upon entering the exam room. Well, I looked over at Judah sitting like a big boy in the chair next to me, and he had his hand extended. I chuckled and said to Dr. Carson, "I think he wants to shake your hand." Sure enough, Dr. Carson extended his hand to Judah, and they shook hands. It was the most "big boy" thing I've ever seen Judah do. I was so proud of him!

Tomorrow, Judah will have his first opthamological follow up since his brain surgery. I imagine she'll dilate his eyes and check the optic nerves to see that the swelling has come down. She may also check his vision to see if the glasses have brought any improvement over the last several months.

Please pray for Judah as he is definitely showing major phobia of any medical staff and their instruments. My sister in law, Yvette, gave us some supplies from the hospital including a stethoscope so that the boys could play with them in hopes that Judah might grow more comfortable with the objects. Well, Tucker really is the only one who will have anything to do with the stethoscope. Judah seems to keep his distance when it is out, but we'll continue to try.

This morning, Lawrence and I had the privilege of seeing our 3rd baby moving all around in my womb. We have known for several weeks that I am expecting, but have only begun to let it out as we wanted to hear a hearbeat and see for ourselves how many babies were in there this time around. I'm a little over 10 weeks along, and the due date has been set for Feb. 4, 2007.

This was a bit of a surprise for us, but we are delighted. Once I found out I was pregnant and began paying a little more attention to making sure I was eating/drinking/resting, I started to feel better physically. For a while I was growing incredibly weak, lightheaded, and nauseous, not having a clue as to why.

You can pray for me for continued strength and grace to care for the boys in a way that would honor God. Lawrence continues to have a lot on his plate at work and is not home like we'd like him to be. Hopefully, I'll come to the end of the first trimester and feel like a new woman. That's what all the moms who have one baby tell me happens as I did not experience such a boost of energy in my pregnancy with the boys for obvious reasons.

Here's a little ticker that I'll try to post occasionally for you to follow along our countdown to Almengor baby # 3. (And, yes, if we can find out the gender, we will and will tell you, too.)

This Week's Follow-up

Hope everyone enjoyed their fourth of July. We attended a picnic our church hosted in the afternoon, took the boys out for icecream and spent the evening relaxing as a family. We opted out of going to see fireworks this year as it would have been much past the boys' bedtime, and I thought it might frighten them a little still this year. Maybe next year!!

This week, Judah will have his follow up appointment with Dr. Carson. I'm not sure if it'll be Dr. Carson himself who looks at him or his P.A., Anne, who is great, too. Either way, Judah's incisions look like they're healing well, to me anyway. The one on top of his head has some gauze or something sticking out of it. It's not very noticeable; it's just a little odd as I'm wondering if the skin closed over it and part of it is sticking out of his head on top. So, I'm definitely asking about that. Also, I'm hoping to find out how often we'll be needing to have Judah receive CT scans and other follow up procedures to make sure the shunt is functioning properly.

I'm going to try taking both of the boys with me to the appointment, hoping they'll get us in and out that way. You can pray that the boys will cooperate, that Tucker won't freak out about the elevators and Judah won't freak out when he sees the "white coats". :)

You can also take another opportunity to thank God with us for the amazing means of grace that Hopkins and all of its doctors have been to us. Thank God especially for Dr. Carson and his team who so skillfully performed brain surgery on my son. Take a second and pray for Dr. Carson. He is a Christian, and God has used him to bring healing to so many. Pray that God would continue to guide his skillful hands and bring healing to many others through his hands.

To Dallas and Back Home Again

Our trip to Dallas has come and gone. We left under a cloud of stress, but returned home refreshed and very excited to see our boys again. The boys got sick with a cold the day before we flew out to Dallas, and I was very nervous about leaving them. But, my husband, a bit more objective about the situation, persisted that I go with him. And, our parents were wonderfully courageous and gracious, as they were left with instructions for the nebulizer machine and a spreadsheet to keep track of all the boys' medicines. They took excellent care of our boys, and told us they had a good time doing it, too. Thanks Abuelos. Thanks Grandma and Grandpa!!

Lawrence returned to an avalanche of work. It seems since Judah's surgery back at the end of May that he hasn't quite been able to catch up. Please pray for him as he seeks to be diligent to complete his work. And, you can pray for us at home, too. It's not easy to release Lawrence to work overtime when I so long for his company and help at home. We trust that God is for us, though, and that His grace will see us through this season.

I just spent the afternoon on the phone with our doctors. Things are gearing up again, and July looks like it will be a month full of appointments. Most of them are follow-ups for Judah, but I have a couple myself. I'll keep you updated as to the specific nature of Judah's appointments, but for now, I'd like to post a few pictures of my cuties. As soon as I get the pictures developed from Sam and Kate's wedding, I'll try to post some of them, too.

Enjoy!

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.