Monday, August 31, 2009

Vision Update

I finally heard from Dr. L. That was a hard wait. He had some very good news, though, so he redeemed himself:) Judah's brain stem and chiasma looked NORMAL!! Meaning he is not visually impaired and his muscle weakness will most likely be temporary and be resolved in time with growth and therapy. The only question mark left is related to the occipital part of his brain. His white matter here is thin, which means he's at risk to have brain-related vision loss later on in life...however, he has had kids with this same problem, and they're fine! He's very optimistic that Judah will be, too. The lack of focusing and tracking are developmental delays, so we will faithfully "work" with Judah doing therapy stuff each day (really, it's just structured play - I love it) and he will hit these milestones on his timetable.

On another happy note, Judah is smiling more and more! Every day! Thank the Lord for each miracle smile:)

Sunday, August 30, 2009

I blew it. I purposely ignored a great opportunity that God handed to me on a silver platter. Gr. I had Judah at Childrens on Friday for labs again. [On a side note, the girls at the ACCESS center where we check in now recognize us, and this last time one actually used the term "frequent flyer miles" in reference to our walk down the hall to the lab. Not sure how I feel about that yet.] Anyway, when we were in the room for his draw the tech...nurse...blood-drawer...what is their title anyway?...asked if Judah had any siblings with Biblically-based names. After I told him about Elijah, Ezra, and Lydia, he asked if my tattoo was in Hebrew. I told him no, but we liked the script because it looked like Hebrew. Here's the part where Bethany was a complete evangelistic failure. You would think that I would actually tell him what my tattoo said! Hellooo! I'm so mad at myself. And I knew it, too, when we were there. But no. So, I sort of tried "making up for it" in a sense by telling him that we talk a lot about the Lion of Judah. (I'm thinking in the back of my mind that maybe this guy knows Jesus, or at least about Him.) But, again, I blew it. Did I ever say WHO the Lion of Judah IS?!?! I'm ashamed of myself and embarrassed to even admit this. Even if that guy already knows Jesus, this could have turned into an opportunity to encourage him or challenge him spiritually...or even make a cool connection with another believer. I'm such a tremendous dork. I feel even worse because one of the points of my tattoo is to tell people and have a chance to share with others the beauty of "BUT GOD". *sssiiiggghhh* I'm so thankful for God's grace and forgiveness. I'm so thankful that He'll give me lots more opportunities to talk about Him. And I'm so thankful for the promise that He will never forsake or deny me. He's amazing. He is so amazing. I pray that next time I won't be able to keep my mouth shut about Him.

Thursday, August 27, 2009

The Endocrine Clinic

Judah had his first appointment at the endocrine clinic this morning. First of many. It was ok. The nurses were nice, but I finally met a doctor I didn't like. I guess with all the doctors and specialists we see it was bound to happen, but it's still a bummer. It's amazing what difference a doctor can make. Well, just look at Dr. B., my perinatologist. He had an incredibly positive effect and influence on the scariest time in our lives. (Truth be told, I really miss him.) I'm thinking if we have to see this doctor every 3 months, we should like him. Which means I'll probably ask for one of the other endocrinologists. I thought I should give this one another shot, though. (That, and I was too chicken to ask for a different dr. when I made Judah's next appt.) Maybe he was just having a bad day. My gut tells me that this just isn't a good match, but we'll see. All that said, Judah did great. He's now 8 lb. 12 oz. and 20 3/4 in. long. (I trust that length measurement more than the one at the pediatrician's office!) We need to go back to Childrens for more labs to make sure his hormone replacement doses are right on, and I need to take in a urine sample to be tested for a diuretic condition that Judah will develop soon, if he hasn't already started. And how does one get a urine sample from an infant? A special urine bag literally gets taped around his little business, put the diaper back on, and wait. Hoping he doesn't pee around the bag like he did in the NICU...3 times. He also has an ultrasound scheduled for the 3rd. The dr. couldn't find his testes and there was no specific information about them from his previous ultrasounds and VCUGs. He wants to know if he has them and where they are. IF he has them? Not ready to travel down that road.

I've been thinking that there's so much "medical-ness" surrounding Judah all the time, that he almost gets lost. It's even hard for me sometimes to set all of that aside and just gaze lovingly at my little boy. Just Judah. He's so beautiful and sweet. He's such a champ, a survivor. But he's also just my little boy.

We finally got our report from BoysTown today. Nothing new. The next step is our consult with the surgeon at the end of September. Then we'll know when he'll have his lip surgery. Boo. It's inevitable, yes, but I'm struggling with the upcoming change in Judah's looks and the recovery process.

Still no word from Dr. L. I've called twice in the last 2 weeks and had the privilege of talking to the same nurse who makes me feel like I'm bothering her. I've realized, though, that this just presents another opportunity for me to be gracious. There have been many, many opportunities in the last 2+ months; I really think that being gracious is one of the ways God is using us in the lives of those we "work" with. He's maturing me in this area, and it's a very practical way that we can be different from other parents. When someone makes a mistake, there's an inconvenience, or someone is rude, we have the opportunity to be kind and gracious. Anyway, hopefully I'll hear from Dr. L. early next week. It's hard not knowing if Judah can or will ever be able to really see me.

There goes my alarm. Time for the 2:00 meds.....

Tuesday, August 25, 2009

Hymn - Rob Hockney

I love the story of this song. I know that Rob said it's his story, but it also entails the story of every believer. It's about life before Christ, Christ's pursuit of us, life with Christ, and the life that awaits us. I get emotional every time we sing it...and then I end up singing it for the rest of that Sunday. I'm not sure which part is my favorite. Depends on the week or the day. Today I would have to say it's the 3rd verse. God so freely and graciously gives me every good and beautiful thing in my life; but these things are just a tiny, tiny glimpse of what is waiting for me when I finally go Home. There is so much joy in knowing that...and relief! Especially on the really hard days. [Speaking of which, I think another positive consequence of trials and pain in our lives is the longing for Heaven it creates in us. And I really long for Heaven some days. For myself and for Judah.] At any rate, here it is...


this heart has been changed by the king of kings
He's revealed to me glory unknown
and in reply to His love my heart sings
the place where the song first was grown

in day of darkness and trouble and fear
no thing or love satisfied
but with capturing grace, a voice in my ear
told me "come, be my son, you are mine."


now moving through life is a toilsome task
but with every passing day
His light is my strength and He helps when I ask
to take all of my burdens away

He gives me such joy, such blessing in life
what a God, to so freely give
and yet I rejoice when I feebly try
to fathom the life I shall live

A Glorious First

He did it. He finally did it. Judah smiled! At me!! He had been napping in his bouncy on Sunday afternoon. When I heard him fuss a bit I went to get him. I started talking to him as I approached him. When he heard my voice he stilled, listened, and then he broke into a beautiful grin! A grin that is completely unique to Judah, because of that cleft. (I'll miss that gap that makes his smile all the bigger.) He wasn't looking at me, but I knew that this smile was for me, and he was responding to my voice! His first real smile, and he gave it to me!

Yesterday afternoon while I had him on the floor to do some "therapy" he smiled some more. It is such a huge deal to see Judah showing emotion beyond just fussing to eat or be held. And he doesn't even fuss much. He's been so blank, so to speak, that to see him smile makes me want to cry!

Now if only I could capture his happy little face on camera...

Monday, August 24, 2009


I love Sundays. They have the potential to be the worst mornings of the entire week; tempting the most devout Christian to temporarily "lose his salvation" while he struggles to get self and many children ready for church, while seemingly everything that could possibly go wrong in a morning does. And for me it's even more challenging, because I'm pumping (many times actually on the way to church - ugh), and bottle-feeding, and measuring out and giving meds (unless Jared did them first) on top of everything else. Thankfully, Jared is a huuuge help...usually. (Love ya, Honey!) Sunday morning is, more often than not, a tremendous test of my patience and ability to maintain a good attitude... But then we get to church. Seems like, no matter how badly that morning may have gone, or how many times I lost my cool, or how frustrated I am with Jared or any number of my children, just walking through the doors of that building is soothing. My spirit knows what's coming and begins to respond immediately. Take a deep breath. Drop the kids off at their classes, greet friends, enjoy people oohing and aahing over Judah, find a seat. Take another deep breath. Let the music wash over me and the words of worship soothe, heal, and encourage me down to my soul. Music has become even more meaningful and powerful to me over the last couple months...well, since June 4th to be exact. Particularly the music we sing at church. God has used our director of corporate worship a lot in my life. I love his heart for worship and his commitment to make that worship deep, personal, and wholly focused on Christ. The music is so well done, without distraction or interruption. It's not just Rob's passion and talent that have touched me, though. More than that, it's the music that God has led him to choose. Ya, ya, ya I know it's not just for me...but I swear it could be. We sing a lot about God's glory. About His goodness and faithfulness. About His love and mercy. We sing about the amazing things He has done and does for us. About giving our lives over to Him, no matter what, to serve and praise and glorify Him. Rob wrote a song called "Hymn" - I love it. It's so beautiful and poignant. I should really ask him if I can put it down here. I guess, overall, the worship that I experience and actively take part in each week serves 2 main purposes right now: to point me back to Christ and inspire me to awe again and again; and to bring healing from the previous week or current circumstances, and rejuvenation for the next week and circumstances. Man, worship is so huge, and I feel like I just butchered what's been on my heart and floating around in my head for the last several weeks. Worship has become so intensely personal in these last months - I really don't know how to better express what I'm feeling...or how God is ministering to me. He is, though. I know it's not really Rob or any other part of the team. They're just the instruments, so to speak, but God Himself is the one ministering and healing. And hopefully being glorified by me in all my feeble, lame, inadequate attempts along the way.

The rest of Sunday is family time. I love the healing, peace, and comfort that that can bring, too. And when I say "peace" I use the term somewhat loosely. I do have 4 kids after all! Family time and our own routine is very special, and I look forward to it all week. It helps us get ready for another big week. Life with a Campus Life director and 4 kids, one with special needs, means that every week is a big week. So thankful for God's grace for each of those days within every big week.

Wednesday, August 19, 2009

My Baby is in Therapy

Not that kind...! Judah had therapy with the OT and teacher today. I came away with a much more detail-oriented picture of how to work with my boy. From talking to him on his right side to encourage him to try to turn his head that way, to stretching his thumbs out and away from his palms (he likes to hold his thumbs in tightly) I feel much more equipped to help Judah reach his goals! He was on the floor for the entire session, with a good amount of time on his tummy. It was so fun to play with him! Talking to him, touching him, watching him respond to me by moving his arms and legs, or even listening to his breathing change as he listened to me. I also loved watching his facial expressions change as I talked to him. All signs of early communication. Judah is weak, but seems to have o.k. muscle tone; and I anticipate that he will only get stronger as we work/play with him and spend time focusing on certain areas. My favorite parts of therapy? The first happened when I was holding him face-to-face. I got really close to his face, and as I talked to him I slowly moved my head. For a second it looked like he was really trying to focus, and his right eye moved slightly when I moved! The second came when he was on his tummy. He was able to lift his head just enough to veeerrryyy slowly turn it to the other side! He was active on the floor and gripped a small toy when the OT put it in his hand. He was trying to suck on his fists and even made a few little noises! Music to my ears - he was almost cooing! So, we have our homework to do now, but I'm excited and optimistic. I don't know if that's all together good or not, since we don't even know how severe Judah's delays or handicaps will be. Should I be so excited or optimistic when he might not even walk? Or if he can't see. Or...or, or, or. I may as well say a million "what ifs" and I already know that's completely pointless. Besides, I'm pretty sure God doesn't loan out grace for days yet to be. Meaning I have enough for today. And only good things happened today, so come out from under the cloud, Woman! The cloud...another post for another day. There are so many. I'm always writing posts in my head. Is that healthy?

Thursday, August 13, 2009

Those Baby Blues

Yesterday was a big day, but we made it. God took me one step at a time, through the anxiety, through the fear, through the disappointment, and all of a sudden here we are at the beginning of a new day already. Yesterday wasn't all bad, of course, but it wasn't easy. (Every Friday since Judah's been home I've heaved a huge sigh of relief when Jared has walked through the door and said, "I made it". I keep wondering when every day and every week will stop being so hard or challenging. Jared thinks it will be awhile. Joy.)

I really like our Neuro-Ophthalmologist. He speaks quietly and calmly and he has gentle hands. He is also compassionate while being straightforward. Overall the news was positive. Dr. L. believes that Judah's inability to focus or track is just a delay. (Those developmental delays...) Given time, he thinks Judah will get there. (We're fine with the fact that Judah has his own timetable for things...rather, God has His own for Judah...we know he'll get there.) He has a weak muscle in his left eye which may need to be surgically corrected later, but the dr. thinks that could resolve itself in time. He also has a hard time moving his eyes vertically. The muscle or nerve (can't remember which) that controls that is in the midline of the brain - also the part of Judah's brain that did not develop properly. (Is there ever anything improper about God's plans or designs?) But his ability to move his eyes better can also change with time. The shape of Judah's eyes is also something to consider. He has "droopy eyelids" (super medical terminology) that slant slightly. Interestingly enough there are 50 known syndromes that that is an identifier for. His eyelids can be surgically "repaired" later on if they hinder his ability to see well. As he grows, and his face elongates, though, hopefully that will change. The last concern is about his chiasma, the point where the optic nerves meet...which happens to be right above the pituitary gland...darn. If the chiasma is missing, then Judah would be blind; however, the one vision test that Judah did respond to was when the dr. shone a light in his eyes. Dr. L. is confident he's not blind - thank You, Jesus! (Another evidence of God's grace: holding me up and keeping me calm as I held Judah and watched his continuous blank stare through every vision test. God is good.) If his chiasma is underdeveloped then Judah will be visually impaired. The dr. needs to get a look at the MRI Judah had in the NICU so he can study this part of his brain. I'm trying not to think about it too much as I wait for his call with the results. Again, I cling to the Lord and His grace.

Judah had his 2 month well-baby visit with our pediatrician yesterday afternoon. Maybe the next appt. with Dr. A. will just be a normal check-up...because this one was more...again. Good news: our little lion cub is now 8lb. 2oz. and 21" long!!! He's officially on the chart, sitting comfortably in the 3rd percentile! (At least it's not the 1st!) He was able to get most of his vaccines yesterday, and because of his weight gain, we don't have to go back for another weight check for a whole month:) Bummer news: Judah couldn't receive his DTAP vaccine because of the risk of seizures as a side effect. Apparently, the neurologist has a note in Judah's file that, because of the way his brain developed, he's at risk for developing seizures. And yesterday I had to tell Dr. A. that Judah has been tremoring again like he was in the NICU. Which means that next week it's back to Childrens for another EEG to make sure he's not actually seizing. If not, then he can be immunized. If so...I don't know. I just realized we'll be at Childrens twice next week. Ugh. Will this ever let up? Blood work, tests, more tests, more blood work, wait, wait, wait for results...this is not the life I had envisioned for any of us...especially for my tiny, helpless boy. It's just not fair. More grieving. It's a tiring, overwhelming, daunting task to be the one responsible to advocate and care for this beautiful little gift! I don't think I'll ever know why God chose me. Jared I can see. Me? Especially considering the fact that God is very intimately acquainted with every one of my weaknesses and failings. That verse about God refining us with fire... Well, it's hot in here. "If you can't stand the heat, get out of the kitchen." Praise God that He enables me to "stand the heat" so that He can continue His good work in me. Christ in me. It all comes back to Christ in me. Wow, this has been quite the rambling... Must be lack of sleep.

Had a little celebration in the kitchen the other day when Jared was holding Judah against his chest, and Judah held his head up and away from Jared!

One more thing... We needed to find a pediatric dentist for Lydia, because our family dentist doesn't see kids under 3. The dentist that we "just happened" to be referred to served on the dental team at the BoysTown craniofacial clinic for 2 years! God has paved the way for every single step of this journey for Judah. And we got a really cool dentist for our other kids besides:)

Sunday, August 9, 2009

Good Morning, Sunshine!

The phrase "a little goes a long way" is certainly true for Judah! His dose of Sinthroid went from 1.2 mL to .6 mL, not a big difference by any means. (Technically, .6 mL is equivalent to 12 drops - a very little bit.) However, what a difference the change has made for my little sleepy head! He's finally woken up to the world:) It's so fun to have more opportunities to talk face-to-face with him, see his dark blue eyes, and enjoy just how adorable he is because he's AWAKE!! He's still sooo laid back - not that I'm complaining. He takes every hug, kiss, rub, pat, tickle, cheek-pinch, smother, and lovin' in stride - doesn't even phase him. Personally, I think he knows just how special he is and how much he really missed while he was "away from home", so he's just enjoying the "little king" status and making up for lost time! I know we are:) Still no change in his ability to focus or track. I'm apprehensive about his appointment this week. I have a hard time really grasping the fact that the dr. could give us devastating news, but I know the possibility exists. I think my mind is protecting itself. I still grieve over so many little things. I guess I won't be ready to grieve over anything big until that moment of knowing comes. But isn't that what God's grace is? Perfectly sufficient and available at the exact moment I need it. In the meantime He gives me grace to cope with the daily disappointments, concerns, and anxieties. I've never had to watch a child's development so closely, but with Judah I'm constantly watching him for cues and signs of communication and development. We're a part of an early development program for kids with special needs from birth-3 yrs. offered through the public school system. It's a really great program, and we're excited about it. Currently, Judah has an occupational therapist and a teacher that come to our home 3x a month to work with him and us as a family. Right now it's about his cognitive and motor skills development, so there are things I'm watching for and working on with him...even though he's so little. Amazing what a mom can do with her 2 month old! They include the entire family, and show us how we can best help Judah, giving him every possible advantage so he can reach his full potential. Right now one of our main goals over the next year is to help Judah reach as many developmental milestones as possible. I had to throw out my expectations and the "calendar" of milestones and come at it from a new angle. It doesn't matter how old Judah is when he hits the milestone. The goal is for him to get there, and then get to the next and the next. And we will celebrate each and every milestone that he hits! When he looks at us, smiles purposely at us, reaches for and grabs our fingers, holds his head up - each one will be a small triumph for our little champ...and for us. Again, I'm so thankful that God has blessed us with such great care for Judah. I never worry that he'll be left behind or somehow fall through the cracks. There are too many people invested in this little guy's life.

Not to mention the numerous people that are invested spiritually through prayer in his little life. Judah is so blessed. And of course, so are we. Even more so, because we have the privilege of knowing and having Judah.

Wednesday, August 5, 2009

2 month Birthday

I can't believe it, but Judah was 2 months old yesterday! These last 2 months have been the hardest, most painful, fastest, most overwhelming, most educational, most challenging...and yet I have a feeling that someday God will bring me to the place where I also see them as the most beautiful in my life to this point. I've seen God in amazing ways and am not the person I was 2 months ago. And I have the most beautiful little boy to show for it! Judah's labs came back showing too much thyroid...basically. So, the endocrinologist cut his sinthroid medication in half, and in 2 weeks we'll go back to the hospital lab for more blood work. He goes to the endocrine clinic at the end of August, too, so we'll also have everything checked out again then. A little bit of a wake up call for me. This will be a regular part of life for a little boy with Hypopituitarism (underdeveloped and non-functioning pituitary gland). Trips to the lab for blood work, regular visits to the endocrine lab, and medication that directly affects the way Judah acts, behaves, and functions. Too much or too little of his hormone replacement meds makes a difference...potentially a big one. But right now I'm thanking the Lord for these medications that keep Judah alive and well; excellent doctors, nurses, and clinics; labs that have the technology to look at his blood and determine exactly how much medicine he needs; and all of this just 10 minutes from our back door! It's extremely difficult for me to keep a positive attitude about all of these things - seems like I'm still in overwhelmed mode all the time - but this is something else that I can trust the Lord to help me with, and thank Him for His faithfulness in doing so.