Psalm 59:16-17

"But as for me, I shall sing of Your strength;
Yes, I shall joyfully sing of Your lovingkindness in the morning,
For You have been my stronghold
And a refuge in the day of my distress.
O my strength, I will sing praises to You;
For God is my stronghold, the God who shows me lovingkindness."

GHRT Hiccup #47

O.k. so there haven't really been 46 other "hiccups" in this Growth Hormone Replacement Therapy process. However, I did hear back from the nurse and the news wasn't great. The endocrinologist said that there is a chance, however small, that the Nutropin he did get, all 3 injections, could have caused a "pseudo-tumor" - a small growth that looks like a tumor. So, even though Judah just had an MRI on June 7th, he has to have another one TOMORROW to look specifically at that part of the brain to rule out this growth. When we get the all clear he can then restart the drug at a half-dose. *sigh* Ya know, if Judah were a "normal" kid, this wouldn't be such a big deal; but because he's high risk, an MRI means anesthesia and intubation...for the 3rd time this summer.

So, God, what's the deal here? Why is this the best thing for him? Why allow these complications? You know how the little things are big deals for him, so what gives? I know Your ways, Your thoughts are so beyond me. I know I need to trust You to lead, rather than leaning on my own finite understanding. But, still...sometimes I just really wonder. So... I guess this is the part where You remind me that my job is not to worry about Judah and all the details of everything; but to trust You, to lean on You, to practice total dependence on You, and thank & praise You in everything.

*Thank You that the MRI could be scheduled so quickly, before we leave for WI, so Judah can get back on this drug ASAP.
*Thank You for doctors and nurses who care about Judah & act quickly on his behalf.
*Thank You for giving Jared a job that he can do from home while he stays with the other 3 tomorrow.
*Thank You for giving Judah a body that handles anesthesia well.
*Thank You for giving me another opportunity to trust You.
*Thank You for giving me another opportunity to rub shoulders with medical professionals who don't know You; a chance to be a light and bring glory to You through my attitude tomorrow.

GHRT Continues...

Judah had a great weekend! I just got off the phone with an endocrine nurse who will be discussing his case with an endocrinologist today. (Unfortunately, ours is on vacation right now, but the one who's on call today saw us in the NICU, and I like her, too.) The nurse thinks they'll probably cut his dose in half for now and then we'll go from there. I'll hear for sure later today.

In other news... Judah's palate repair was rescheduled for August 9th! I'm relieved, because this means we'll be able to do all our fun family vacation stuff before we have to think about the surgery. I'm a little frustrated that this wasn't able to be done in June; we'd be done or almost done with the recovery already! But, I know that God knows what the best timing is for him and I'm just going to trust Him.

He won't!

I have 5 minutes to say that Judah will NOT be getting sick this weekend! Day 2 without the Nutropin, and still no vomiting. And he's even very subtly more...peppy. I'm not sure that's the right word, but he's definitely different. I have to admit that being right here is a nice boost to my "Mommy instincts"! I really don't know what this is going to mean for his Growth Hormone Replacement Therapy, but I'm thankful that he's not getting sick, and that God has given him an amazing endocrinologist that is more than capable of caring for him and equipping me to do the same. And just in case somebody missed it: I was right. :)

Will he or won't he?

I took Judah to the pediatrician yesterday afternoon. His primary is out on Fridays, so we saw the one that we've seen a couple other Fridays. Bottom line: she thinks the vomiting has nothing to do with the Nutropin; however, she said he doesn't have a GI bug either...yet. She thinks he's on the verge of getting sick, and the "intermittent intolerance" of his feeds is just the first indication. She expects that over the weekend he'll come down with something and that will answer the whole "is the drug making him sick" question. I, on the other hand, disagree. Judah has proved me wrong before, but I still think it's the drug. He's been fine so far today, and last night was the first night we've skipped the injection. We'll see how he fares throughout the weekend without any more injections. Time will tell. I suspect that we will be talking to his endocrinologist on Tuesday about how to handle this drug that makes him sick. I would love Judah to prove me wrong in this case, because he needs this, and I really don't want this to be some complicated, drawn out process. I'm glad God knows.

Growth Hormone Day 3

Alright, so I didn't get back here as soon as I thought I would. Well, no surprise there! Our training with the nurse went well. She was great, and included the 3 older kids, too. Jared and I each got a practice run with the "practice pen", which went well; but the best part was Eli standing over both of our shoulders repeating each step, making sure we didn't miss anything! It was pretty funny, and he was very proud of himself:) Each of the kids got a turn with the "practice pen", too. Then I gave Judah his first injection. The nurse said it was perfect. And it was easier than I though it would be! We have a pen for him. It's actually brand new - so new we were the first family that the nurse taught how to use it. It's great, because a 30 day supply of the medicine is all ready to go in the tip of the pen. All we have to do is attach a tiny, tiny needle to the tip, set the dose, and inject it. Unfortunately, a needle is a needle, and Judah doesn't like it. I'm hoping that with time he'll get used to it...and maybe I'll figure out a way to do it without him noticing or something. I'll have to work on that somehow. We're on day 3 now. Please pray for him! The day after his first injection he vomited. It's gotten slightly worse each day. I have to take him to the pediatrician today to rule out a GI bug; and if that's ruled out (which I'm confident it will be) then we have to quit the Nutropin for the weekend. We'll call the endocrinologist on Tues. to let him know if that made a difference or not, and then go from there. Judah needs every ounce of nutrition he gets. He needs to keep his other meds in his system. He needs this drug, too. So, I don't know how all this is going to turn out. However, I do know that God's hand is still on him. He cares for Judah more than I can fathom. And He will faithully lead us in this, giving the doctors wisdom, and bringing about the best outcome for Judah.

We'll keep ya posted!

Nutropin

That's the new magic word around here. Why? Because, that's the drug that is going to make my darling little boy miraculously turn into a darling BIG boy! UPS delivered 2 boxes to my house today. Our new patient information packet and travel cooler. I'm already starting to feel a little overwhelmed and the nurse hasn't even gotten here yet!

*God, can I really handle this?

*Did You really equip me for this?

I've been thinking a lot about what this new medication is going to do for Judah. What it will mean for him to begin growing, and at an almost-alarming rate. I was initially excited about it. I still am, I guess. But reality, another new one, is slowly sinking in. Judah will be going through a dramatic change over the next year. This whole last year he virtually stayed the same in size, except for his weight:) But I've gotten so used to him just being small. That's who he has been. "Little Baby Judy". I have to say good-bye to that. The other part of this new reality is his "specialness" becoming more noticeable. Conspicuous. Obvious. As long as nobody asks how old Judah is, they just happily assume he's an adorable infant. Except for the NG, no one passing us in the store, or peeking at him momentarily, would know that there's anything "wrong". That's going to change. He's going to start getting bigger and bigger, closer and closer to matching his actual age, and it's going to get more and more obvious that he his not "normal". Oh my word, I feel guilty for even thinking stuff like this! It doesn't matter! None of this matters. I don't care what he looks like, or what he can or cannot do! I don't care what anyone else thinks! Do I? Well, actually, I do. I care that people not judge him, but accept him and love him for the amazing little miracle boy that he is! I don't want to pass people staring at him in the store, wondering what's wrong with that boy. We live in a society so obsessed with outward appearance and performance. Argh! These are just some of the thoughts that have been swirling around in my head as we have approached this day...finally. It's a good day. It really is. This is so good for Judah. This is God's good for him! But it's a day that will bring about change. And, if you know me at all, you know I. Hate. Change. Well, I think God's been working on me in that area, so I think I can honestly say I. Strongly Dislike. Change.

Thanks for praying for me in all of this. A thought struck me just last night, and literally stopped me in my tracks. I really believe that there are people - or even just one person - that pray for me and/or Judah and/or our family every single day. That's amazing. That's encouraging. That piece of knowledge is life-giving.

I'll be back. Hopefully not too long after we meet with the nurse. I'm sure I'll have lots more to say!

Dates

Real quick...

Judah starts growth hormone on Tuesday, the 29th. Great news, but also overwhelming, because this is another "life change". A daily injection that needs to be given at the same time each day. I'm praying that God would prepare me emotionally and mentally to give him these injections every day. And that everything during my training will go smoothly.

Also, Judah's palate repair has been scheduled for July 27th. We leave for a 10 day family vacation on the 30th. Please be in prayer with me that the timing of Judah's hospital stay, and his recovery, will work with these travel plans. OR, if need be, that his surgery will be rescheduled. I have to talk to the nurse about it on Monday.

No matter what, God is in control and He is GOOD! I believe that more today than I did when we started on this journey over a year ago! Regardless of what my plans or fears may be, God's plan is perfect and Judah's care is ultimately His responsibility. He will take care of him. And me. Thanks for praying.

A Good Report

We'll see how much I can get down here with Judah sitting on my lap! He's become quite the grabby boy lately...which is something I will never complain about, since it's quite an accomplishment! Just wanted to get a few recent things down here while I had a chance. And for anyone that's wondering... Yes, I'm absolutely dying to sit down and write all about his birthday party, reminisce about the last year, and share pictures. However, I need a good chunk of time to really do that, so that's what I'm waiting for.

Anyway, about that report...

Judah is doing really well right now! He's been healthy since he got over the bronchitis, so we haven't had to reschedule any procedures he's had since then. On June 7 he had an MRI and a skeletal survey. The survey showed no skeletal anomalies - praise the Lord - so he should be able to grow normally on the growth hormone! There's no skeletal anomaly preventing him from learning to walk, etc. We're relieved, to say the least. The MRI showed no changes over the last year. Again, we are so relieved! All of the..."issues" in Judah's brain have the potential to get worse or deteriorate, but his conditions remained stable!! That means that there's nothing that needs to be done now, and he'll have another MRI in 6-12 mo. We still have no idea what any of his brain development means as far as delays both physically and mentally, but that's fine with me. We take everything a day at a time. He is who he is and I couldn't be more in love with him!!

On June 15 I woke up to the sound of Judah babbling beside me! "Mamamamamama" - YES!!! He's officially babbling a little bit every day, "Mamamama", and I can't tell you how excited I am about it! I know he's not calling me "Mama", but to hear those sounds coming out of his mouth is so precious to me! This is a major milestone for him:)

On the 18 Judah had a follow-up with his ophthalmologist to gauge how well his eye muscle is responding to the Botox injection he received in May. I haven't been able to see much improvement, but Dr. L. could see progress, and he was happy with that. So, of course, I'm happy with that. We're praying now that his brain will be able to maintain the alignment of that eye on its own. If not, then when we go back in Oct. we'll have to talk about other options, i.e. surgery. He'll also dilate Judah again to check his vision. Since Judah is borderline in the vision department, he'll be looking for improvement...otherwise we'll be picking out little tiny frames. Yikes.

Judah's therapy is going really well, and he finally got his new chair. He loves it!

Judah has also finally graduated from size 0-3!! Not because he's so long, mind you, but because he's just too chubby to fit into those little clothes! He's become so, so rolly poly, all 16 lbs. 23 1/2 in. of him! He's so squishy and fun to kiss and cuddle:)

And finally, some very good news. I just got a call from Judah's soon-to-be local distributor of Nutropin, the Growth Hormone Replacement Therapy drug. Everything and everyone has finally been approved! Tomorrow a nurse will be calling me to set up a time for her to come here and teach me how to do the injections, and then we will officially start the treatment! Yay!! Our endocrinologist told us that because the receptors that respond to growth hormone in Judah's body are so arid from not having any hormone, they'll soak up the drug like crazy, and in this first year Judah will grow at double the rate of a normal child. In a year he'll catch up to his growth chart! So basically, my 4-5 mo. old sized baby will be the size of a 2 yr. old in just one year. If all goes well. I have a hard time picturing that. He's been so tiny for a whole year, and now all of a sudden he's going to be big. Good news, yes!

Well, it's taken me over 30 min. to write this, because of these 4 darling distractions I call my children. And now I just can't put them off any longer. Time for a walk!

My Kids Have Radar

Every time I sit down with this blog a little person, though he or she is currently occupied, senses my seeming inactivity and interprets that as the perfect opportunity to come and ask me to read, or play a game, or get a snack, or, or, or... So I find that I have several posts swirling around in my brain and no way to get them down here. Until today! My older boys are happy to play by themselves, since I just spent the last 3o min. reading to them. My super sleeper Judah is napping. And my darling little princess, who was not so darling earlier today and had to spend some time on her bed, ended up falling asleep during her "imprisonment" - and I suddenly find myself sitting at the computer in a quiet living room with no interruptions in sight! What to do? Where to begin? Oh the joy of being able to write down a few thoughts:) I guess I'll start with what's been keeping me busy the most these days...

After months of prayer and talking, Jared and I have decided to put our house on the market. We'd love to move into a bigger house with a more open floor plan for Judah (whatever his mobile needs may be) and our growing family. While the "need" to move is certainly not urgent, and not even a need, it is getting a little crowded around here, and it would be awfully nice to have some extra space! It would also be great to move to a location that were much closer to Jared's school district. Jared wants to hang out with his students at our house, have events and parties there, regularly invite them over. It's written all over his face. He's been very successful in just about every aspect of his ministry here, but this is the one thing that has been out of reach for him...and he doesn't like it. Honestly, I'd love to change that, too. His students are important and special, and this would be a great opportunity for me to get involved with them, too; as well as our kids. Anyway, all that said, we have no idea if our house will sell or not. And that's the thing. This is another situation that has brought me back to the place of total dependence on God. My helplessness and total lack of control stares me in the face every time I look at that "For Sale" sign. Every time I think about moving, or a showing, or a different house I'm reminded that the outcome is not up to me. It's not my decision. I believe that our house will sell. I believe that God led us to put it on the market in the first place. But what if it doesn't sell, and the whole point of this is God allowing us another exercise in faith? As frustrated or disappointed or impatient as I could get during this whole process, I recognize that we're really in a great place here. Jared & I have willingly placed ourselves and our children at the mercy of God and His plan here; and we have the privilege of seeing Him work and provide, whether we move or not! I keep reminding myself that God will do what He will do and it will be GOOD. And isn't that just so true of everything in life?! It's a great lesson to have to be reminded of; to keep at the forefront of your thoughts. Not to mention the fact that I've also been reminded of all the ways that God has proven Himself to be faithful and overwhelmingly gracious to us in the last 10 years; and that, compared to all of those instances, selling a house is a pretty minor thing.

Practically speaking, in the every day of keeping the house picked up & ready for showings, of wondering what each day will bring, of hoping...I'm experiencing such a mix of anticipation, guardedness, cautious optimism, and trying to fully rely on God and His perfect timing. Weird.

Well, we sure would appreciate your prayers. Life in the Stewart house is crazy enough without adding a "for sale" sign to it! Thankfully God gave me a husband willing to help around here, kids that have grown to accept their mom's penchant for cleanliness & organization and don't really notice when she's kicked it up a notch, & house that is walking distance from the park and library when someone wants to come look at said house.

Whatever the outcome...to GOD be the glory!