Norditropin, I Love You

Judah is doing so well on his new growth hormone drug! I picked up the new pen on Friday and gave him the 1st injection that night. Saturday he was vomit-free! Sunday he threw up during church, so I started him on Mylacon drops that afternoon to help with some gasiness. I believe that his low muscle tone is complicating things, making slow bowels a factor here. The combination of these to new variables means that Judah has gone 2 full days without so much as a little spit! PRAISE THE LORD!!! I even like the Norditropin pen better. It's slightly more user-friendly; and for some reason that I can't explain, Judah is not bothered by these injections like he was with the Nutropin pen. Another thankyou, Jesus!

Today we see his pediatrician for his H & P so he can be cleared for surgery...which happens in just 12 days! Yikes. After that we head over to Childrens to see his GI doctor. I'm hoping to get some answers about how extensively low muscle tone could effect his bowels and what else I could be doing to help him. (I know part of the problem is that he's non-weight bearing, so he doesn't have the help from gravity here, either.) We'll also be talking about his G tube, and possible plans following recovery from his palate repair.

I just can't describe the relief I feel from finally getting a handle on the vomiting! I was praying that we would be able to get this resolved before surgery and the G tube. Thankyou so much, Lord!

Buh-Bye

After 2 more days of vomiting (1-2 times each day) I called the endocrine office and said that, though there is no medical reason for Judah to be throwing up on the Nutropin (that we can see, anyway) we were done with the Nutropin! This morning I picked up a sample pen of a different brand of the growth hormone drug, Norditropin. I'm optimistic that this change will have good results. I'm optimistic because I really can't handle being pessimistic about it. We'll take one day at a time. I'm committed to giving this drug a week. If in that time there's no change, then we'll experiment with other factors that might possibly be causing the vomiting and are unrelated to the growth hormone. I had a great talk with Judah's OT about it when she came this morning. She was encouraging and helpful, and I love her for it! Because of all the different kinds of kids Judah's therapists see, they always have different perspectives or insights to offer. I really appreciate that about them.

So, we're basically back to square one here...but we really didn't get far with the other drug so I guess it's not a big deal. And I feel more confident and encouraged today because of the plan that our OT and I came up with for him if we need to change other variables...one at a time:)

"What if..."

I was cuddling with Judah last night, just enjoying looking at him. I do that a lot. Sometimes I can't seem to get enough of him. I have felt that way about all my babies...of course, Judah has been a baby baby much longer than the other 3 were. Anyway, I got to thinking about how different Judah is...differently-abled, "special", not normal. I don't usually think of him that way. He's Judah, my darling boy. But every once in awhile I let myself think about, wonder about, the "what if". What if Judah had been born "normal". His life, our lives, would be so different! He would probably be walking by now, trying to keep up with his brothers. He would be so big! He would be saying his first words. He would be climbing on things, causing mischief, and messing up his siblings' rooms. He would still be nursing. His life would be so simple. No doctors or procedures or medication. Any time I have thoughts like this I start to feel a little guilty. Is it ok to wonder about these things? To think about what life might have been like? To...wish...even? I can't believe I just wrote that. But it's the truth. As I thought through some of these things last night God brought something to mind that I haven't thought of before. At least not quite in this way. These thoughts and feelings, wonderings, are evidence that we live in a fallen world; but we were created for eternity, and that's what we long for. A perfect eternity. As long as I remember that and turn my eyes to Jesus and the future hope that is ours, then I think it's ok to wonder sometimes. We're supposed to have a heavenly perspective. And thinking about how tough things are for Judah definitely makes me long for Heaven. When I think about these things, in the end, I still wouldn't change Judah for anything! He is exactly the little person that God created him to be. And God designed each of us, all 6 of us, to fit perfectly together as a family. Come to think of it, if Judah wasn't sick, we would all be different. Would I really want to change who I have become, and who Christ is making me to be? I've learned so much...Jared has, and I know our kids will continue to grow to be different people from whom they otherwise would have been. So, no, I really wouldn't change anything. And yet...come, Lord, come.

Revelation 15:3b-4 (TLB)
"Great and marvelous
Are your doings,
Lord God Almighty.
Just and true
Are your ways,
O King of Ages.
Who shall not fear,
O Lord,
And glorify your Name?
For you alone are holy.
All nations will come
And worship before you,
For your righteous deeds
Have been disclosed."

Nutropin Restart

I finally heard back from the endocrine clinic. And Judah's endocrinologist has finally been able to review the results from the MRI and ophthalmologist. According to Dr. D's findings there's absolutely no reason that Judah should be vomiting from the Nutropin. So, we're starting him back on the Nutropin at a half dose tonight, and hopefully giving it a week. If in that week we have no concerns, he can then go back to a full dose.

How am I feeling about this? Ambivalent. As is usually the case. I'm relieved that Dr. D. is back and in charge again. I'm relieved that we're not starting over with another drug right now. (I do not look forward to going through that whole process again!) I'm very anxious about the vomiting starting again. To top it all off, Judah's been more "reflux-y" lately and had vomited several times at totally random times even off the Nutropin! The only thing I can think of is that his 4 12 month molars that are all cutting at the same time - poor guy - are causing it. He's been a total champ with the teething, no other side effects...so that leaves me wondering...

We've also been experiencing quite a bit of stress in some other areas, so I feel like, all in all, I might just buckle. I haven't had much success in just leaving this all with the Lord lately. My head knows, my heart knows, my flesh is kickin' and screamin'. And winning. There's not much else to say about it. I just need to keep my head and heart focused on Him and His Word. And somehow ignore my flesh's natural tendency to worry and jump ahead to the worst case scenario.

Here's a great place to start:

Ephesians 1:3-14 (TLB)

"How we praise God, the Father of our Lord Jesus Christ, who has blessed us with every blessing in heaven because we belong to Christ. Long ago, even before he made the world, God chose us to be his very own, through what Christ would do for us; he decided then to make us holy in his eyes, without a single fault - we who stand before him covered with his love. His unchanging plan has always been to adopt us into his own family by sending Jesus Christ to die for us. And he did this because he wanted to! Now all praise to God for his wonderful kindness to us and his favor that he has poured out upon us, because we belong to his dearly loved Son. So overflowing is his kindness toward us that he took away all our sins through the blood of his Son, by whom we are saved; and he has showered down upon us the richness of his grace - for how well he understands us and knows what is best for us at all times. God has told us his secret reason for sending Christ, a plan he decided on in mercy long ago; and this was his purpose: that when the time is ripe he will gather us all together from wherever we are - in heaven or on earth - to be with him in Christ, forever. Moreover, because of what Christ has done we have become gifts to God that he delights in, for as part of God's sovereign plan we were chosen from the beginning to be his, and all things happen just as he decided long ago. God's purpose in this was that we should praise God and give glory to him for doing these mighty things for us, who were the first to trust in Christ."

Tummy Bug 2

We made it through the night without incident! Judah kept down another 6 oz. of pedialyte over night, and he's still sleeping...over 15 hours later! I'm praying that today will be a "recovery" day for him with good rest and getting back to his normal diet.

Thanks so, so much for praying!

Tummy Bug

Judah appears to have the stomach flu. He hasn't been able to keep anything down since this morning; however, he does seem to be tolerating the 2 oz. of pedialyte I gave him almost 2 hours ago. The stomach flu is something I have dreaded and feared for the last year. I'm so thankful that God is with me! Please pray for Judah: that he won't vomit anymore; that his electrolytes will remain stable; that he won't become dehydrated. Please pray for me: for wisdom if he vomits again, and for grace if I have to give him an injection of his hydro cortisone. I'm praying that this won't turn into a hospital visit.

Thanks so much for shouldering this burden with us. I also need to remember to cast it completely on the One Who cares for me...and for that precious little boy.

On a funny note... I told Lydia that I thought Judah had a little tummy bug and was sick. She looked at me with a slightly bewildered expression on her face and said, "Did Judah swallow a bug?" Thanks for the chuckle, Lord:) And for that little girl.

*smoooooch*

All my hard work and dedication paid off! The commitment to consistency. The tireless efforts I invested. Alright, so it wasn't quite as dramatic as all that, but I am no less pleased. After weeks of trying to teach Judah how to "kiss" he's finally got it! I have been saying "kiss" every time I kiss him...and of course throwing in a few extra kisses for good measure:) Even the kids got in on it sometimes, imitating this pattern. Too cute! A couple weeks ago I started pausing after saying "kiss", giving him an opportunity to respond. Today - FINALLY - he got it! I came to him and kissed his face a couple times. Then I said "Kiss!" and waited. In that brief pause he grew still, stuck out his little tongue, and waited expectantly for Mommy's kiss! Joy! Joy! He even did it again for me later!

*sigh* It really is the little things...

Round 2 Wrap-up

Judah saw his ophthalmologist on Tuesday morning, and everything looked just fine! The next step is to try another brand of the hormone. I'm so not excited about starting over, but I am ready to find something that works for Judah so he can finally move forward in this area. Please continue to pray! I'm anxious about the vomiting and any other side-effects we might encounter.

On a more encouraging note, I've been very impressed with our pediatrician and the cranio-facial team in the last few days. Apparently there's been lots of conferring going on about my special little guy between these 2 parties and the pediatric surgeon regarding the G Button. Everyone's in agreement, everything's a go! We have a consult with the surgeon next week. The button will be put in laproscopically right before they do the other procedures, and we'll be able to use it the following day. I'm looking forward to this now that we've made the decision and I feel so confident that it's the right one for Judah.

Thanks so much for praying! Speaking of which... Remember Evie? Please pray for her as well. She's undergoing brain surgery tomorrow at 8 A.M. You can get more details on her blog.

Round 2 Continues...

I talked to an endocrine nurse a couple times this morning. After the first phone call she talked to an endocrinologist (I was wrong, Judah's is out again today. Bummer.) and then talked to someone at the drug company. Apparently, vomiting is a very rare occurrence, so they want to be sure to cover all their bases. Meaning Judah needs to see his ophthalmologist tomorrow morning (praise the Lord we got in so quickly!!) to have his eyes dilated so that Papilloedema can be ruled out. It's a swelling behind the eye(s) that could be caused by the drug and would then cause the vomiting. If everything looks normal then we move on to a different brand of the drug. I was so hoping that we would be past this now. I just...I mean, it's not like we need anymore complications and have all this spare time for extra doctor appointments. So, my attitude isn't exactly stellar right now. God, You are in control here and I know that You're good. I just don't get this. I mean, why all the hassle? What is Your good in this?

There is so much floating around in my brain right now. All of this, trying to get ready for our trip a day early, extra phone calls, and trying to deal with and move past some problems we're having with Judah's pharmacy. Is it possible for a person's brain to implode? Not to mention the fact that we were supposed to have a fun family day with the kids at Fun Plex today and got rained out. Gr.

Didn't I just write about Psalm 62 & 63 yesterday?? How quickly I lose sight of my Rescuer, my Stronghold, my God. And the whole "grace for today" thing that is supposed to be at the forefront of my mind each morning. Ok. So, I have the grace that I need to do everything I need to do today. Tomorrow I'll have exactly what I need...tomorrow. Today is enough. Thanks, Lord.

Nutropin Round 2

I did something this morning that I've never done before. I called a doctor during church! The service had just started, Judah was just finishing up a feed, and he threw it all up. I had an endocrine nurse paged right away (well, after I got Judah all cleaned up) and waited for her to call me back. So, we're back where we started. No injection tonight, call the doctor in the morning, see what he says. Thankfully Judah's endocrinologist is back from vacation and will handle this directly. I have complete trust and confidence in him, which makes this situation easier to deal with. I know Judah couldn't be in better human, medical hands:) Still, I wanted to cry when he threw up. Seriously? Seriously. Again? Poor guy! This is frustrating and unsettling. Plus, it's obvious that Judah's not quite himself. I really don't know what's going to happen tomorrow...we're taking the kids to an amusement park all day tomorrow, so the timing of this isn't great...and I wouldn't be surprised if I had to take him in tomorrow...still, I do have a sense of peace. This is not a surprise to God, and it's certainly not outside of His control. I missed the message today, but I read the text while I was with Judah waiting for the nurse to call. Pretty powerful and appropriate stuff. Although, when is God's Word not?

Psalm 62
1 My soul waits in silence for God only; From Him is my salvation.
2 He only is my rock and my salvation, My stronghold; I shall not be greatly shaken.
3 How long will you assail a man, That you may murder him, all of you, Like a leaning wall, like a tottering fence?
4 They have counseled only to thrust him down from his high position; They delight in falsehood; They bless with their mouth, But inwardly they curse.
Selah.
5 My soul, wait in silence for God only, For my hope is from Him.
6 He only is my rock and my salvation, My stronghold; I shall not be shaken.
7 On God my salvation and my glory rest; The rock of my strength, my refuge is in God.
8 Trust in Him at all times, O people; Pour out your heart before Him; God is a refuge for us.
Selah.
9 Men of low degree are only vanity and men of rank are a lie; In the balances they go up; They are together lighter than breath.
10 Do not trust in oppression And do not vainly hope in robbery; If riches increase, do not set your heart upon them.
11 Once God has spoken; Twice I have heard this: That power belongs to God;
12 And lovingkindness is Yours, O Lord, For You recompense a man according to his work.

Then I read Psalm 63.
O God, You are my God; I shall seek You earnestly; My soul thirsts for You, my flesh yearns for You, In a dry and weary land where there is no water.
2 Thus I have seen You in the sanctuary, To see Your power and Your glory.
3 Because Your lovingkindness is better than life, My lips will praise You.
4 So I will bless You as long as I live; I will lift up my hands in Your name.
5 My soul is satisfied as with marrow and fatness, And my mouth offers praises with joyful lips.
6 When I remember You on my bed, I meditate on You in the night watches,
7 For You have been my help, And in the shadow of Your wings I sing for joy.
8 My soul clings to You; Your right hand upholds me.
9 But those who seek my life to destroy it, Will go into the depths of the earth.
10 They will be delivered over to the power of the sword; They will be a prey for foxes.
11 But the king will rejoice in God; Everyone who swears by Him will glory, For the mouths of those who speak lies will be stopped.

Full Friday

First things first: Judah's MRI results came back normal!! Praise the Lord! We can resume his injections tonight at a half dose. Please pray with us that he won't experience any more side effects! My heart is begging God to allow this to be smooth sailing from here on out.

On to the rest of the day... It's only 2:30 but today has already been so full! A whole morning with the Cranio-facial team at Boys Town, and lots of phone calls besides. I'm tired, but I feel really good about everything that's gone on today. Looking back to our clinic visit with the team last year is proof that we've grown. We were so overwhelmed last year, and exhausted! This time we've got 12 months and tons of experience under our belts so we didn't feel overwhelmed at all! We were able to ask educated questions, get some helpful answers, and have a plan in place for the next several months. The biggest discussion/decision that came out of today was that Judah needs to have a "G Button" put in. Judah pulls out his NG tube somewhat regularly, and having to put it back down after his palate repair next month means we risk damaging the repair. Not a worthwhile risk in my book. He's had the NG for 4 months now and there's no end in sight there yet. He only takes about 25% orally. After talking about it with the pediatrician and surgeon on the team, and discussing it between the 2 of us, Jared & I really believe this is the best thing for Judah at this point. I'm nervous about it because it's a more invasive procedure and intervention that we were trying to avoid, and it doesn't come without risk...on the other hand the NG has its own risks, and I can't help but love the idea of just looking at Judah's face 24/7, instead of this tube. In the end the important thing is that Jared & I do our very best to advocate for Judah, and trust God with every decision and detail! We got some good information about Judah's palate repair, as well, so I think we're both feeling more ready for that to happen.

As an aside... While we were at the clinic a family came over to admire Judah. They were there with their 20 yr. old daughter for her very last visit with the team! They asked how old Judah was, and we got to talking about surgeries and "stuff" that goes along with clefting. As we talked I noticed tears streaming down their daughter's face. We talked for several more minutes, but her tears didn't stop. I finally asked her if she was ok. She said she wasn't crying because she was sad or anything. She said, "He's just so beautiful." How can I explain how that one statement from her touched my heart? This young woman on the verge of putting all the surgeries, therapy, and clinics behind her, a woman who has scars of her own, looking at my son just at the beginning of this whole process and seeing the beauty in him. I don't know how else to articulate this. Her tears were beautiful to me.

Deliverance

I've been learning something lately. A lesson that God has brought to my attention through a dear friend's blog and a Ted Dekker book. I thought that I was just unable to get to the computer to write about Judah's birthday and reminisce about the last year. After some thoughtful, and somewhat uncomfortable, self-evaluation I realized that I was purposely avoiding that post. Honestly, I don't want to remember. Who enjoys reliving the most painful and excruciating parts of their past? Who wants to live through those dark days again? What good can possibly come from purposely remembering the worst times of your life, and allowing yourself to feel that gut-wrenching pain all over again? I didn't want to go back to the NICU. I didn't want to sit here at the computer sobbing and grieving again like it was just yesterday. But this is where God stepped in and showed me Himself and part of His purpose in revisiting the past. (Thanks for your honest posts, Lindsey; and thanks to Ted Dekker's phenomenal writing.) If I choose to forget (or try to) the pain of the past, then I am also choosing to forget the deliverance. There is tremendous deliverance brought about by our Rescuer, but how can I continually appreciate and embrace that if I'm not willing to embrace the pain and darkness that He delivered me from?! In the Old Testament God was always having the Israelites build altars. Why? To remember. What? Their deliverance. They literally built memorials to remember how God delivered them from darkness! Now that I think about it, the whole Jewish faith revolves around remembering! I also realized that unless I allow myself to remember and keep those days and feelings fresh, I can't totally and effectively minister to other families who are experiencing the pain and uncertainty of a sick child. If I allow myself to walk back down that road then I can weep with these families and uniquely pray for them...even if they're total strangers.

So, as difficult as it will be, I'm actually now looking forward to being able to sit down and write that birthday post. I don't look forward to the tears or the renewed feelings of sorrow and agony I felt a year ago; but I do eagerly anticipate what God will reveal to me about Himself, and I'm excited to relive His deliverance!

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!