Mom and Dad

My parents are extraordinary. God made a beautiful match when He made them for each other. I'm deeply grateful for the privilege of growing up with them as my parents - my models for a godly man and woman, for a godly marriage, for godly parenting.

While I know my parents aren't perfect and have had their struggles and battles in marriage, I don't remember them ever really fighting. They disagreed about things; but there was never any question that Dad was the head of our household. Dad loved Mom and respected her thoughts and opinions. He showed love to her and took care of her. Mom respected Dad and submitted to his leadership. She honored him and valued him by instilling in me a love and admiration for my dad that belonged to no other. They each had their own set of responsibilities in and outside of the home, but they also made a great team, and things at home ran smoothly. They were happy to see each other, they were affectionate, they loved spending time together, they held hands. 40 years later, these things remain true.

They've been through a lot together in 40 years. The loss of work, the loss of a child, the loss of a dream of being overseas missionaries, the loss of parents, the loss of a son. They have been faithful to God and to each other through every loss and I have seen God work and provide. New jobs, new dreams, the privilege of serving missionaries stateside, the hope of being reunited with child and parents, deep meaningful relationships with family members and friends, the restoration of a son. They are each gifted uniquely and I have seen them use their gifts for God's glory. I have seen them cling to God individually and together, and I have seen them grow and change in the same way. I don't know of any time in 40 years when either of them walked away from the Lord or from each other.

My parents have exemplary characters. They both have this amazing work ethic that is an example to everyone they work with now, or have in the past. They are a man and woman of integrity; dependable, trustworthy, kind, compassionate, generous, and selfless. They know how to love others. They know how to follow God in meeting the needs of others. They understand that what they have and who they are is the Lord's, and they surrender that to Him, to be used for His glory.

My parents are in it for the long haul. And I don't just mean with each other. They have never held to the philosophy that once the kids leave home they're "free". They have somehow maintained a balance of stepping back and allowing us to be independent of them, pushing us to "leave and cleave"; and yet still remain involved, supportive, and totally available. There is not a doubt in my mind that my parents are there for me and my brother, regardless of the need or the level of commitment or sacrifice meeting the need might require. They trust the Lord with us, they point us to Christ; but they walk beside us as well. They have extended themselves to their grandchildren, and are committed to pointing them to Christ also. They are passionate about their grands knowing and serving Jesus, and they live a life of loving Jesus in front of them.

My parents are servants. I can't remember a time from my growing-up years when my parents were not involved on a Missions Committee and in some other capacity at church. Their love for the Body of Christ is evident in their willingness to serve her, whatever that might look like as God works. They're both great with kids, but also wonderful examples to young men and women. Mom is a whiz at all things crafty, and loves creating for others. Dad is a sponge when it comes to the Word, and loves talking about theology. He can communicate God's character and what He has taught him to others in meaningful ways, because of choosing to live life as His student. They touch others' lives by being thoughtful and gracious. Not confrontational or abrasive.

My parents are my friends. They somehow instinctively made the transition from parent to friend, and they did it well. Yet, Mom knows when I need to her to be Mom, and there is a little part of me that will always be Daddy's little girl. I love spending time with my parents, playing games, talking, taking walks, shopping with Mom. And I consider it a privilege to claim the responsibility of caring for them when they get older should God allow that. I am eager to spend that time with them, serving them and providing for them. How could I feel any other way after their lifetime of caring for us in so many tangible and intangible ways?

My parents are phenomenal grandparents. They don't overstep boundaries of discipline or spoiling; yet they thoroughly love and cherish their grandkids, finding unique ways to show them that they are special and valued. My heart warms and I can't help but smile at the fact that my dad will babysit his grandkids by himself. Have play dates with them. Take them for bike rides, to the park, out for ice cream, play games, teach them about cars and birds and life, and "oh" and "ah" at every dress up outfit. I am so proud of the father that he is for me, and the grandfather he is for my children and nieces and nephew. My nieces and daughter are blessed to have a grandma who will teach them to sew, to cook (and include the curious boys), to create, who reads to them, sits on the floor and plays kitchen and dolls with them, and will leave a written legacy of love and memories for them (and the boys). Judah is immensely blessed to have them on his team - 2nd string as Grandma says - loving him, cheering for him, adoring who he is.

My parents laugh. And they make us laugh. Well, Dad's really got the corner on that market. They laugh at and with each other, and they can laugh at themselves. They're fun to be with! And they're great friends...with one another and to others.

40 years. July 24, 1971 marked one of the most important days in my history. The day my parents committed their lives to each other. The day they promised to love and serve each other before the Lord. The day they re-committed themselves to the Lord, and made a new commitment to Him as a couple, a family.

It was a new chapter in the story of the beautiful , young nurse and the handsome sailor. I love knowing that, because of Christ and our hope of eternity, this story can only end with the words...

And they lived happily ever after.

Happy Anniversary, Mom and Dad.

Hmmm...

I find it interesting that right after I write a post about needing people and desiring to live a life of weakness and surrender before the Lord, Judah is admitted for another serious infection. The night that I brought him in I was lonely, wishing Jared could be with me. We didn't have a stellar experience in the ER, and I was beyond exhausted. I was scared and frustrated and confused. I felt mentally, emotionally and physically weak, and I remembered what I had just written about that. That caused me to cry out to the Lord, admitting my weakness and fear and falling on His grace. He was right there with me, and I felt like I fell into His arms. It's not like He takes away all those feelings and I'm left instantly re-energized and ready to tackle the world - or the next diagnosis. But there is definitely a sense of His peace. A sigh of relief. The feeling of a shared burden being lifted. A sense of relaxation and letting go because I'm not in control or responsible for any outcome. I'm getting emotional now as I think about how good God is as He meets my needs in every situation. Not like a roaring lion, powerful and overwhelming; but more like the gentle, reassuring whisper of a best friend. I just know He's there. I'm choosing to keep thoughts like these at the forefront of my mind as this stay here continues.

I don't believe we'll be going home today as the dr. had at first hoped. Judah keeps spiking high fevers, and the root of that is unknown at this point. The dr. speculates that there's something else involved here that is resistant to the injectable antibiotics he's on. I anticipate the need for an IV today. I pray I'm wrong. He had a renal ultrasound this morning to rule out some other unpleasant possibilities. It's weird to think that he went 2 years without any kind of infection, given how unhealthy his kidneys really are, and then gets nailed with 2 just a month apart. I'm so thankful for the nurses on this floor. They know us, we know them. We know the routine around here. They know I'm capable and assertive. We have a mutual respect and appreciation for each other. Jared and I make a lot of jokes like "You know you've been here too often when..." and "We'll have to remember that for next time...wink wink." Sometimes if you don't laugh, you'll end up in a weepy heap on the floor. We got permission to take Judah off the floor last night, so we took him and Lydia for a wagon ride down in the lobby where they have some fun things to look at. He loved it! When he's not feverish he's happy and playful. Jared and Lydia are at church. I miss it. I'm hungry for the truth statement for this week. Last week's was going to be "Hardship produces faith", but our youth pastor that was going to teach on that was out with a kidney stone. Kind of ironic. Instead, we had a powerful morning of worship. It was awesome! I've carried that truth statement with me all week, and I'm eager to know what this week's is.

Mom & Dad are probably about halfway to Omaha. The Boys had a fantastic week of "Grandma/Grandpa Camp", and were so excited to have me, Lydia, and Judah join them there for this next week while Jared was going to be at YFC Camp. It was going to be a hard week without my Love, but a more restful week. I was looking forward to time with my sisters and their kids, time with my mentor, time with my parents. The Boys were so sad that I wasn't coming yesterday, because they miss us and they were looking forward to another week of fun! It helped when I told them that we would all have dinner together, whether here or at home, and that Dad had decided to stay home from camp so that he could take care of all of us. I love that man. I can't wait to see my boys! I miss them when they're gone. A LOT.

Keep praying. Judah won't get well until we know exactly what we're dealing with and how to treat it. Thanks everyone!

Relapse

It never ceases to amaze me how quickly things can change! Lydia, Judah, & I should have been rolling into Des Moines within the next hour or so, well on our way to spend a week with Grandma & Grandpa in WI; but instead we're back on the 4th floor at Children's watching the Disney Channel. Judah's day was a normal one once we got home from the MRI. We put him to bed that night, no problem. Just a couple hours later he got restless and started fussing. He felt hot. Within the next few minutes he vomited. My mind instantly raced back to just a month ago when he was admitted for a kidney infection/UTI. Long story short, I took him to the ER and he was admitted upstairs shortly after 2 AM. The rest of the night is a little bit foggy. I remember giving a medical history and med. list (no small feat) to the intern around 3, and then I finally got to go to bed. The morning came much to quickly. Judah is better today and responding well to the injected antibiotics. Looks like we'll get through this stay without an IV - praise the Lord! Judah has another UTI and kidney infection. When they get the sensitivities back, they'll know exactly how to treat it and can then switch to oral meds. The dr. is hoping to send Judah home sometime tomorrow. Outside chance it could be Monday. The fever has been gone since sometime last night, and Judah is happy.

Please pray for the Boys and my folks. They'll be driving here tomorrow.

The Boys (especially Eli) are disappointed, and my parents will be spending their 40th anniversary in the car.

Pray for Judah to get well and stay well. His surgery is still 3 weeks out.

Pray for me that I will be able to give my anxiety over to the Lord and rest in Him. I am fearful that Judah will get sick again before surgery.

Praise the Lord for a church family and good friends who are taking care of us!

Praise the Lord for a husband who sets himself aside and "rolls with it" so much better than I!

For those of you keeping track...

...here is some update stuff on the Little Lion.

Right now Judah is in MRI. This is the one the neurologist ordered to determine whether or not Judah's brain stem has an issue that is causing the droopy eyelids and limited eye movement. For the first time they let me come back to the procedure room with him! I got to carry him back there and hold him tight until they put him to sleep. It was so cool for me - and good for my mama heart - to be able to hold him close while they put the mask over his face to give him the gas to knock him out. He was totally relaxed, looking into my eyes one second; and the next he was totally out. He doesn't even know we're separated right now, and I love that! I'm going to make a point of asking every time now if I can go back with him. Not that I expect to be here for an MRI all the time... We'll have the results of the MRI sometime next week and then we'll go from there in deciding how best to treat Droopy Jud-y.

Judah has been healthy since leaving Children's at the end of June. His palate revision has been delayed and will hopefully be rescheduled in October. His ureter will be repaired on August 12. The dr. will remove the obstruction and put in a stint; and hopefully Judah will remain infection free here on out. I'm praying that this will just be an overnight, without any complications that would keep him here longer.

This Champ has hit some exciting milestones, too!

On July 1 he moved out of the infant car seat! Woot! Woot! He'll be rear-facing indefinitely, but that car seat thing sure was a big deal:)

He has also grown 12 inches in 12 months! 12 INCHES!!! Those 12 mo. clothes are getting tight and short around the middle:) Come fall, he'll be quite comfortable in 18! It's the little things...

It's been fun to see him hit some developmental milestones just in the last week. He is finally making connections between objects and their functions! He picked up a play phone and held it close to his ear! He thought it was hilarious when I started saying "Hi, Grandma!" like he was talking to her (which is one of his favorite things to do, by the way); and now it's a game he loves to play. He picked up a comb and tried combing his hair! He puts his shirt on his head! And at Goodwill, he picked up the tie out of the cart and put it around his neck! He might not have any verbal words, but he is understanding more and more words cognitively. I'm adding new signs pretty consistently now, so we'll see what he does with that. He doesn't have anything new yet, but I know he recognizes most of the words we're saying/signing.

I'm excited for Judah to get his own gait trainer. We're borrowing one from the city through his early intervention program, but when we move we have to give it back. His PT decided to write an order for him to get his own so that there's no interim period without one when we get to the new district.

I also found out that I might be able to opt Judah out of preschool! This is something that has been on my mind for the last several months. I know preschool is still another year away for him (Early Intervention is birth-3 in the home, and then services are provided through the school at age 3), but I have struggled with this. Because we're moving to a new district and will be working with a new team, this is something that I needed to talk about with our current Services Coordinator. I'm so encouraged, because based on Judah's medical history and depressed immune system, there's a very good chance that I can keep him at home and he will continue to receive the services he needs through the school system! Praise. The. Lord. It's something to pray about if you ever think of it, because this is the option that I strongly believe is the best for Judah!

Those are the highlights. The rest of us are doing well, too. I'm looking forward to a low-key week in WI next week while Jared is in the CO mountains for YFC Camp. I am NOT looking forward to being apart from Jared, but I am looking forward to some extra time with my folks. They're such a huge help when Jared's gone. I like them a lot;) Not to mention the fact that Grandma & Grandpa's house is a magical place when you're 9, 6, & 4 and you get to do special things there that you don't get to at home.

While I'm on the subject of my parents... HAPPY 40th ANNIVERSARY (July 24th) & HAPPY 70th BIRTHDAY, DAD (Aug. 2nd)!!! This is a big summer for you, two!

Before you know it we'll be back home, settling in for a new school year. Yikes. This summer has flown by! Better enjoy what's left of it...

The cuddle trick didn't work. I laid in bed thinking about what I had just written, fearing that my words might sound harsh or be misunderstood. I've gotten some very encouraging feedback this morning, so maybe my fears were mostly unfounded. I still want to clarify a couple things.

There are several people - mostly women - in my life that "get" me. They are an integral part of my life and they understand my thoughts and feelings. For the most part anyway. I am deeply grateful for and appreciative of these people, because they encourage, challenge, and uplift me without feeling pity or holding me in unreasonably high esteem. I need you guys! We all need people in our lives to build us up and journey with. I absolutely need that when we're in a valley; but I still want to be looked at as a normal mom and woman who has simply chosen, by the grace of God, to walk with Him and allow Him to carry me through. [That doesn't sound like much walking on my part.] I want my life to be about weakness and surrender, not strength and independence; because then it's God who is doing and dealing, and it's His glory that is apparent. I am often so bad at this kind of living, but that's what I desire. And what makes me just like everyone else is the fact that I need people in my life that will do this with me. People (women) that are committed to a life of surrender, that will encourage me in mine - as well as all the daily, ho-hum, normal mom/wife kind of stuff - and that will share the journey with me. I'm finding more and more that this is such a huge part of the Body and how we should be functioning. Together.

Thoughts from an Insomniac

OK, so technically I'm not an insomniac; however, I do often have a hard time falling asleep. Hence this late night rendezvous with my computer. I've been thinking about something a lot, and since it was actually keeping me up I decided I'd better just have at it and be done with it. Maybe then I can get some much needed sleep.

I have this sense that people feel sorry for me. Or for us. Like we have it so bad, or things are extraordinarily hard for us because of Judah. Like I'm some kind of special mom with super powers because of what I have to "deal with" every day. Like we live on some different plane from "normal" families. Like the challenges I face day to day are so way harder or more unique than any other mom's. The funny thing is, some of the people (mostly moms) that have said things that make me believe they would fall into this category, are the ones that I admire the most or shake my head in wonder at or pray for the hardest because I can't believe what they have to deal with every day! And when they tell me they "could never do it", I'm thinking the exact same thing about them! So, this is what I have to say about all this.

1). Don't you feel sorry for me, or us. And don't you feel sorry for Judah. I have never been sorry for one second of his life that he is who he is. I grieve over the loss of a "normal", pain-free, healthy, uncomplicated childhood for him; but I do NOT grieve over him! That boy is a gift in the truest sense of the word; and he has taught me more about God's grace, love, and faithfulness than anyone or anything else on the planet! (Except for maybe Jared. Well, and obviously Christ. Anyway...) He is pure joy! And in many ways he's so easy! He's ridiculously happy and carefree, easygoing and easy-laughing. He is beautiful and wonderfully made, simply because he was made by God and for God. He is a constant reminder to me to recognize in every single person the image of God regardless of race, abilities, appearances, or...anything! Judah was created by God for His purpose and His glory; and then He saw fit to graciously allow us to be a part of Judah's journey...which is really all about a journey with Him.

2). Sometimes being Judah's mom is extremely painful, because I love him thoroughly and passionately, and because his life can be painful and difficult. Sometimes it's hard because of the complications of his illnesses, because of the challenges he faces, and because of the time commitments he requires. I do need help sometimes. I want my friends and family to love us by remembering us and praying for us. I want people to ask how we're doing and how they can be praying; and I want them to be genuinely interested in Judah. And if I'm going to be brutally honest (why stop now, right?), then I need to admit that every once in awhile I do want somebody to feel sorry for me. But I really don't think that any of these things make our situation so much more unique than anyone else's. Doesn't every mom want or need these same things? We have it way "easier" than families I see at Children's. We have it way "harder" than families I see everywhere else. But don't the definitions of those two words depend so much on perspective? My point is life is hard no matter who you are. Every family, every person has daily challenges and struggles. Everybody has problems. Everybody experiences suffering and heartache and sorrow and fear and anxiety and uncertainty. Regardless of life circumstances, we all share a commonality of pain.

3). I've learned a lot about God's promise to only give us what we can handle. For starters, "I" can handle a whole lot more than I ever thought possible. But that's really only because I short-changed God and His power in my life. His amazing, beyond comprehension, life-changing, life-giving power! He's really the One "dealing with" my day to day. Well, as long as I surrender and let Him. I've also come to more fully appreciate God's power in others' lives as they face challenges and overwhelming life circumstances that I think I could never handle! The awesome truth though, is that God has uniquely equipped every single believer to follow Him in the life that He has called them to! Whatever that life might entail! No matter what, whether it feels like it or not, even if it seems like you might never be able to stand up under the burden of it - "you" can! Because God alone is carrying you, and has given you every mental, emotional, physical, and spiritual tool that you could possibly need to follow Him and LIVE. WITH. JOY!

I wish I could live in that truth every moment of every day. I just get overwhelmed and discouraged so easily sometimes.

So... Don't put me on a pedestal. Don't not share prayer requests with me, because you think I already have so much on my plate. Share your burdens with me, and I'll share mine. I'll pray for you, and I'll thank God for you. We need to do life together, helping one another, extending love and grace in every kind of situation.

And now that I've gone into tomorrow with these thoughts, I'd best sign off and climb back into bed. I think if I cuddle up to Jared I can sleep now. Good night.

Judah is doing great, settling back into his normal routine...just in time for us to leave bright and early tomorrow morning for a week in Wisconsin. He's been so happy to be home, and the kids sure are happy to have him home! He's been smothered and loved to the max! Lydia is making sure that she makes up for lost time:)

Saw the ped. this morning and everything was normal. Normal CBC, most likely a normal CRP will come back tomorrow. I'm not at all worried about taking Judah out of state...although I do know how to get to Children's in Milwaukee if need be. But he'll be fine!

Looking forward too seeing more family this week! Family on Jared's side that we haven't seen in years; many who haven't even met Judah yet. They're in for a real treat:)

This is what I saw when I walked through the back door. We are loved.

Didn't take Judah long to make his way to one of his favorite spots.

The Countdown

Tomorrow is the day! OK, I can't actually say with absolute certainty that Judah will go home tomorrow, but at this point it sure looks that way. Judah's CRP level is down to 5.7 (down from 19.7 on Saturday), and by tomorrow morning it should be normal, or veeeery nearly. He had a fever on and off yesterday evening, but as long as he stays normal through today and tonight & his CRP drops further, we're good to go.

We had a family field trip to the play room this morning. Judah had fun watching all of us play. The IV on his hand slows him down, but he is determined to be mobile! Jared and I had fun playing games with the kids, too.

Last night was a good night for Judah and Jared. Thank you, Jesus! It was a little bit different for me. I don't know why, but we Stewarts seem to be an all or nothing kind of clan. When it comes to stress...well, when it rains it pours. We're supposed to be leaving for WI on Friday, and I haven't done a thing to pack or get the house ready to show while we're gone. On Jared's way to the hospital yesterday afternoon, his car broke down. It is currently sitting at a gas station while Jared tries to figure out how to get it to the shop. Some "unfortunate events" occurred in Lydia's closet which required me to rip out her carpet & tack strip in there, and then wash the floor with bleach twice & warm soapy water once. I did a load of laundry last night, and when I went down to put the clothes in the dryer, my basement floor was covered in water. That was the last straw. I called Jared crying. When that didn't fix any of the problems I felt overwhelmed by, I admitted defeat, got ready for bed, and read for the next hour and a half. This morning I'm rolling my eyes and shaking my head about the whole thing. Things happen. What matters is my attitude and how I respond. [Aren't you proud of me, Mom?] So, in the light of day, back with my boy, I can see that this sequence of events is another opportunity to trust the Lord, and practice taking one thing at a time. One step at a time. One day at a time. When I think about it, it is kinda funny...in that Oh-Lord-help kinda way.

We had a cool conversation with the hospitalist this morning. After going over everything again, and talking about some of Judah's "issues" that complicate things, she said we've done an absolutely amazing job of keeping him out of the hospital! She said kids with Pan-Hypopituitarism (Judah's pituitary disease) are usually in the hospital much more often. That felt so good! And just a little while ago I was talking to his nurse. She remembered us from when Judah had his lip repair done in December of '09. I commented on how surprised I was that she remembered. She said, "Oh yeah! You're the kind of family you just don't forget!" Again, wow. These things make me feel so good; but I can't help but go right back to the Lord with that. To me, statements like that are just another evidence of His goodness. I believe He's the one in control of how often Judah is or isn't in the hospital, and He's the one who protects him. But it's also the Lord who has molded and shaped our family and attitudes to be who and what they are. I can't handle this stuff the way I do apart from God's over-abundant grace in my life, and the peace and strength that He provides. I work hard at managing Judah's care and making sure he's got the best of everything possible; but God is the One that equipped me for the unique task of caring for Judah in the first place. And He's the One who designed Jared & I to fit together to make the perfect team for our family. So, Lord, You know what a huge encouragement and boost it is to me to get affirmation like that; but I have to give YOU the praise and the glory! You are sovereign, so You can fit all the pieces together. You are in control, so I can trust You with every detail. You are the Great Physician, so I can trust You with Judah. You are GOOD, so I can rest, knowing that nothing comes to us without first being filtered through Your loving hands. Thank You!

Last night was challenging for me, too, because I was apart from Judah. The first time I've ever left him overnight in the hospital. It's so hard to feel torn between Jared, the 3 kids, and Judah. PLUS my other responsibilities at home. Since Judah is the smallest and most vulnerable, I am always drawn to him over the others. I'm not sure if that's right or wrong. Maybe it's not even a question of right or wrong. It's another life lesson I'm in process with. Time management and focusing on the task (or person) at hand, regardless of the distractions around me. Elijah, Ezra, and Lydia need my love, affection, and undivided attention no matter where Judah is, and it's a challenge for me to give them what they need when Judah isn't well. Same thing with Jared. I owe that man some serious face time when this is all over. I'm super excited about a family date we're having tonight! Jared & the kids are bringing a pizza and we're going to watch "The Parent Trap". Good times:)

Thanks to all of you who have so faithfully prayed for Judah and the rest of our family. Prayer is powerful, and for reasons that are beyond me, God chooses to use our prayers. Thanks for all the encouraging words that bring healing and renewal to our hearts. And thanks to our friends here who have had a very hands on role in making these last several days much easier and more enjoyable than they would have been otherwise. Not to mention the goodies that have certainly helped lift our spirits;)

Stuck

That's pretty much what I'm feeling this morning. Just kind of stuck. And tired. And a little...discouraged maybe? This hospital stay has not been at all what I thought it would be. I was completely naive when Judah was admitted on Thursday, thinking it would probably be just an overnight stay...then maybe just a couple days...surely not through the weekend...but here we are, still on the 4th floor. *sigh*

Last night was fine until the nurse came in to give Judah his IV meds at 2. When she was checking his IV, she realized that it was no longer usable, and the charge nurse concurred. Time for a new IV. I wanted to cry, because this 1st IV was the 4th attempt after blowing 3 veins in his hands and arm. I honestly didn't think they'd be able to find a place to put a new IV, and all I could see happening was a repeat from Thursday morning. I started praying right away, called Jared, and then headed to the treatment room with Judah's nurse and the charge nurse. To their credit, they made the experience a little easier just by being so sad that they had to do this. The charge nurse spent the majority of the time just looking at all the possibilities, carefully weighing each one. After 1 blown vein in his arm, she was able to get the IV in his other hand. [I don't even know why it's important for me to write down these details. I guess it's just part of the process, part of my journey with him, remembering and dealing with all the ups and downs.] The rest of the night was good for Judah, but the morning came too quickly.

He's napping now and I'm glad. He's doing really well, improving and acting more like himself each day; but he tires easily. Visits from his siblings - which are most definitely the highlights of his days - leave him exhausted. They came this morning before church, all dressed up, and made Judah's day. Then the nurse took out his scalp IV and gave him a bath, and that was enough to knock him out. It only took 5 minutes of cuddling with him before he was sleeping soundly. Later today we'll hit the playroom for awhile again. He's so cute in there, crawling around and exploring in his little hospital gown.

Judah's urologist and the hospitalist (pediatrician) came by early this morning. They're both happy with how he's improving overall. He's been without a fever for well over 24 hrs. now, he's eating normally, he's well hydrated, he's interactive and smiling. Here's the kicker: he still has an elevated CRP (C-Reactive Protein) level. This is a protein that comes from the liver. The liver puts out more of this in response to an attack on the body. It's a good sign that his CRP was so elevated on Thursday, because that told them that his body was fighting; however, the fact that it's still elevated is an indication that he's not well enough to go home. In a normal kid, after 24 hrs with no fever and consistent progress, they wouldn't follow the CRP so closely. But Judah... Ah, my dear, sweet boy... Because of his adrenal insufficiency and the obstruction, they're just not comfortable switching to oral antibiotics and releasing him until that number changes significantly. His urologist wants it to be normal before they stop IV meds. The hospitalist would be fine if it were just much lower, but not necessarily normal. One would send us home maybe on Tuesday. The other would potentially send us home tomorrow. I have learned that when you have multiple specialists involved in the same case (which Judah always does), there are differing viewpoints, perspectives, and philosophies. Especially when dealing with parts of medicine that can be somewhat gray, i.e. CRP levels and when it's safe to switch to oral antibiotics. What's most important to me is that each doctor is genuinely concerned about Judah and doing what they believe to be in his best interest. I don't believe that any of the doctors want to keep him here unnecessarily; and I do believe that they are acting out of a conviction to be conservative in Judah's case because of the complexities of his illnesses. That doesn't mean that I won't have a conversation with someone if I strongly believe it's time to go home. But I'm not quite there yet. Judah was very sick. This infection and the obstruction are serious, and I certainly don't take lightly his vulnerability. That said, I'm tired of hospital food, this pull-out chair, and visits from my family. I want to live with my family, not just see them occasionally. And Judah needs them, too.

This afternoon I'm trading with Jared and he's going to take a night shift. I don't know how well I'll sleep at home with him and Judah here, but I really need to be home for some quality time with the kids. They need my attention...not to mention the piles of laundry and housework that do, too. Although I have to say, Jared does a good job of keeping the housework under control. The kids get clean, the floors get swept, the toys get put away. I'm looking forward to a pizza night with the kids, reading another chapter (or 3) of Little House in the Big Woods, and tucking them in. And my own shower. And my smelly soap. And my own pillow.

Judah Update

It was a whirlwind Saturday morning. Not at all the norm for the Stewarts, but I'm thankful for all the new information, and the time we got to spend together this morning! Jared and the kids brought homemade donuts for breakfast and we all ate together...while watching Saturday morning cartoons on cable. A dream come true for E, Z, & L.

I wish I could have captured on film Judah's reaction to his siblings' arrival

this morning. It was so priceless, and classic Judah! He saw them, got that huge grin on his face and did his little spazzy move - he totally tenses up and shakes because he just doesn't know what to do with himself he's so excited. He couldn't stop smiling at them this morning, and he took advantage of the 1st opportunity he had to get his hands all over them!

He had another great night last night, sleeping through all his vitals, and sleeping late this morning. He woke up hungry and ate a good breakfast. He's almost back to himself today, and I'm so relieved and thankful!

He has been on a constant Pedialyte drip through his button (I was able to keep him so well hydrated before admission, that the need for IV fluids wasn't there - thank you, Jesus!), but late this morning the dr. decided that was no longer necessary, and he's back on his regular diet. I had fun taking him to the playroom after that, where he was able to crawl around and explore for the first time. Lydia had fun in there, too:)

I could try to impress you all with my newly acquired knowledge in the field of nephrology, but I don't have the time or the finger energy to put even half of what I now know here. Too Much Information! I'll just try to stick to the facts and trust you to continue to pray:)

The doctors are still waiting for the final results from the blood/urine cultures. These results will tell them exactly what kind of medication, what dose, and what duration will be the most effective for Judah. Because of the severity of the infection and the complexity of Judah's medical history and kidney condition, they're not willing to release him until they have this information and he's been fever free for at least 24 hrs. I'm disappointed that today isn't the day we get to go home; but in my gut I, too, believe this to be the best thing for Judah, so I feel good about that call. So far, he's responding well to the additional antibiotic and he's had a normal temp since last night! His energy and love of exploration are returning, so his crib is starting to cramp his style;)

The urine culture did show a UTI; however, his urologist doesn't believe that the infection originated in the urine, or is a result of his kidney reflux. That's good, because that means we don't have to talk about doing a surgical repair we were hoping to avoid until he's 5. Our prayer, then, is that he remains infection free from here on out so that he can get to age 5 before that surgery happens.

The scan showed obstruction. We don't know how long it's been there, but that is the cause of the infection. The obstruction needs to be surgically removed; however, it's not urgent. It will take his kidney/ureter 4-6 weeks to heal completely from the infection. That puts us right at the time he's scheduled to have his palate revision/hernia repair. At that time, he'll be put on 2 new antibiotics to prevent infection until he can get the obstruction removed, hopefully in early fall. I'm thinking maybe October. I'll be following up with Judah's plastic surgeon to make sure there's no question of conflict between this kidney stuff and the palate revision. If there's any question, then we'll delay the revision and have the kidney repair first. Please be praying about all of these scheduling details. Pray that I'll just rest in the Lord & trust Him to take care of Judah and make sure he gets the surgeries he needs at the perfect times.

Before I sign off, I wanted to share a couple small but cool things that keep me looking to the Lord, thanking Him for His goodness.

*Yesterday morning I went to the cafe to grab a muffin and white hot chocolate (my breakfast of choice here - so, so good). I saw a lab tech at a table and smiled. She's the one I used to ask for when Judah was such a hard stick as a baby, and she knows him by name. She saw me and asked me what was going on with Judah. She said she knew they had sent lab up to his room twice that day, and she was concerned for him. I was so touched by that! I told her what I knew and thanked her for asking. She was genuinely sad for him, and hoped he recovered quickly. That was a bright spot for me.

*Last night I texted Jared at 9, missing him and sad that we were spending the night apart again. Not 10 min. later I got a call from the 4th floor front desk saying I had flowers! That man of mine sent me beautiful flowers. Happy just does not do justice to the emotion my heart felt.

*We knew that we were going to be talking to someone from Urology this morning about the scan; however, since it's Saturday, we didn't know who might be on call. It's always a little bit hard to deal with a specialist you don't know or don't have a history with. When Judah's very own urologist walked through the door, I was so glad to see him, and couldn't help but thank God for seeing to that minor detail.

There are so many times when in the midst of something very difficult for Judah, I ask God, "How can this be Your good for Him? How can this be a part of Your plan?" My choice to believe in God's goodness and sovereignty doesn't take away the pain of those moments or days. But it does give me hope that the suffering and challenges that Judah faces regularly are not senseless or unseen. He has a Creator who lovingly knit him together, and could see what every moment of his life was going to entail. Judah has a Heavenly Father who cares for him, holds him (I believe), captures his tears in a bottle. He is intimately acquainted with Judah's pain, and every challenge that he faces now and will face in the future. He is fiercely protective of him and more in love with him than I ever can be (although that's hard to imagine, because I really love that little boy). I don't know how to rectify all these things with the fact that God's good does not always fall under my definition of good. But I have to believe that somehow God can feel the way that He does about Judah - or any of His children for that matter - and still be good in all that He does, even when we can't see it or understand it to be good. I just realized, or remembered, that not only does He keep Judah's tears, but mine too. Every one that I shed over my son, He holds as dear. ...I wonder what my bottle looks like. ...Maybe it's pink.