Thursday, March 31, 2011

A Losing Battle

Just felt like I needed to be here for a minute. I've been battling discouragement for...awhile. I don't know how long exactly. I think it kinda just sneaked up on me. And now I'm in this full blown battle...and I'm losing. Bad. All of my usual sources of encouragement or affirmation or pick-me-ups have been sorely disappointing lately. I don't know if God is stripping me of those "relievers" right now because He wants me to look to Him as my only source of encouragement, my sufficiency, or...what. But that's frustrating to me, because He's not here! He can't be excited with me about what's happening with house stuff. He can't look into my eyes and tell me everything's gonna be OK. He can't verbally affirm and encourage me. He usually uses people for that! There are so many things going on right now. So many things I want to be excited about. Things I want to write about. I just can't get out from under this heaviness. [Lord, a little sunshine might help. Just sayin'.] I can't even find the time to really write. So then I end up here all frustrated! This is not how I want to be. I want to be the person that I know God is transforming me to be. But right now I feel ugly and undesirable.

Jared left me a letter this morning. It's supernaturally appropriate. Some highlights:

"Distractions suck. They're very real things that strive to take our attention away from something else. The Evil One seems to be hitting us pretty hard with distractions recently..."
"...God has completely prepared us for today!"
"...I just realized that He has written our story in such a way that we will never again be satisfied with 'the pleasant life'."
"We've tasted the true water, and we can never be satisified with anything less."
"I'm convinced, my dear one, that God wants to use this short season of uncertainty and upheaval to take us deeper. He's setting Himself up for a huge win..."

Another friend put it this way: "God loves to stack the odds against Himself in our lives so He can show His power!"

I feel discouraged. I feel like I've already lost. But God...

That's all I have right now.

Tuesday, March 29, 2011

Droopy Jud-y

It didn't take long for Judah to "earn" his first nickname from Lydia. I think he had only been home from the hospital a few days when I started hearing "Jud-y" coming from her cute little lips. As much as I initially disliked that nickname (it being awfully girly), it stuck, and we ALL call him Jud-y! Cutie Jud-y, Tooty Jud-y, and now Droopy Jud-y. [Hopefully he won't hold it against us when he gets older.] We saw the ophthalmologist today, and he's concerned because Judah's eyelids have become measurably droopier than they were 5 months ago. Judah does a lot of compensating for that, which shows maturity on his part - a good thing - but the droopiness is something that needs to be dealt with. The dr. said it could be a couple of things; the first being a condition called Myasthenia Gravis Disease. This is easy to test for, and treatable with medication. That's all I know about it so far. He'll be tested next month when he gets his routine endocrinology blood work done. The other possibility is a condition that needs to be tested under supervision at the hospital. Not awesome. If both of those were to come back negative, my understanding is that we would need to talk about surgically correcting his eye lids then. When I look at him now, I realize that his little eyeballs have seemed to gradually get smaller and smaller over the last few months. And when he smiles they both virtually disappear! I'm wondering if those are things I should have noticed sooner. I don't think that would've changed anything. Still. I don't like it when I miss something that concerns him.

Other than that piece of new news... Little Champ is crawling everywhere - albeit completely uncoordinatedly - and it's the cutest, most endearing, most fun thing to watch! He gets so excited and so proud of himself! Sometimes, he's so excited his legs get ahead of his arms and he does a nose dive into whatever surface he's crawling on. Which means he's had a couple of nice shiners on his forehead. Therapy is going really well for him in every area, too. He's standing more easily and for longer periods of time. He's taking supported steps more easily. He's pulling himself up onto his knees all the time, trying to reach a magazine off the coffee table, or a book off the love seat. Basically anything he can't have. He's getting stronger. He's retaining more information. He hasn't learned any new signs yet, but that's going well too, so I know it's just a matter of time. We've added a lot of new words to that list, though, so I guess it'll take awhile. He has a new sound! La! He's eating 1000+ calories a day (over 200 more than his target)!

He's been cleared by his plastic surgeon for surgery, so I anticipate that it will be scheduled at the end of April or beginning of May. That will be coupled with his hernia repair. We see that surgeon next week. Please keep praying about this! I'm still struggling. I'm not sure how to just let it go, and find His peace in this.

Sunday, March 13, 2011

Wednesday, March 9, 2011

Doc's Report

The beginning of the appt. wasn't super encouraging, considering the fact that Judah's O2 was hovering around 88. He got a breathing treatment right away, and then off to x-ray we went. When we came back the nurse checked his O2 again, and he had jumped back up to 99:) He needs 2-3 breathing treatments (Duo-Neb) a day, Prednisolone (a steroid) tapering down over 6 days, and Omnicef for 2 weeks to kick a nasty sinus infection. The steroid will "calm everything down quickly", and the antibiotic will take care of the infection. So thankful it's not pneumonia! After seeing his initial numbers, I was seeing a sleep-over at Children's in his very near-future. Thank You, Jesus!

Through it all, the Champ just smiles...
February is over, and so is Judah's hiatus from doctors. It was nice while it lasted. Still, I don't really have anything to complain about. His schedule is so much lighter than it was even a few months ago!

Today I had to call his pulmonologist to get
him in. He's got another cold/upper respiratory something
that he's just not kicking. Poor baby. Not sure what the dr. will find or prescribe, but Judah definitely needs a little extra help this time around.

Next week we see the plastic surgeon for our final follow-up (I
think) before they schedule surgery in April. I just got butterflies. That's next month already! I'm still not ready to do this one again. I keep praying for a miracle...well, many in this case. At this point, God seems to have other plans. I don't understand that, but I trust Him. While I struggle to get past the anger and frustration of having to put Judah through this again.

At the end of the month we see the ophthalmologist, and then the allergist/pulmonologist again. I'm eager to see our "eye guy", because I like him so much; but also because I want to know how Judah's vision is developing. He's compensating for his droopier eye by holding it open with his thumb
all the time - which is actually really adorable and endearing - but I know this can't be a good thing to have to do long term in order to see, and I wonder what he's missing because he can't see well out of that eye. (You can see him doing it a little bit in this picture.)

Aside from being sick, Judah is still doing great. The child is eating like...well, like a kid who's trying to catch up with the rest of the almost-2-year-olds of the world. Can't wait to get him weighed and measured today. He's still not officially crawling, but he can't get any closer without actually doing it. And he loves blocks and mega blocks - something I discovered last night in an attempt to keep him occupied while I made supper:)

Thursday, March 3, 2011

but God...

Found this on top of my blow dryer this morning. After I wrote the last post. And, yes, my husband still writes me weekly letters.

[It's kinda small and hard to read. Maybe I'll copy it in another post later.]


That's the perfect word for me this morning. I'm weary physically, emotionally, spiritually. I've been fighting an infection since the weekend and my body is feeling the effects of that. And yesterday we got a financial double whammy. I don't really feel like spiritually boosting myself up and reminding myself about all the things I know to be true about God. I'm frustrated. And truth be told, a little hurt I think. I know God doesn't function at a performance-based level. But when you strive to seek Him, please Him, trust Him, and really believe that your heart is right... Yesterday was really hard to handle. And I got mad at God. I don't think I'm mad anymore. Just...weary and wondering why He does what He does. There are no assurances that when we trust Him and obey Him He will "reward" us and bless us. I know that. But yesterday was so disappointing, because I think on some level I hope that He will work that way.

God, I know You're in control here, and I know my heart is what matters to You. I know that the money is Yours. I know that You love me. And that Your plan is perfect. And there is purpose behind everything You do and/or allow. But right now I only feel like this sucks. And I'm tired. I don't feel ready for today. Thanks that I get to see my girlfriends this morning. Perfect timing. I trust You and believe You intellectually. Please help my hear to follow quickly.

Wednesday, March 2, 2011

"A Sign of the Times"

Judah has really latched on to this signing thing. Finally, after months of repetition! It's so fun to see him sign consistently and successfully! I think he loves it too, because he's figured out that if he signs "eat" he gets all kinds of different foods:) Because of all the progress he's made physically and mentally in the last few months, and the fact that he'll be 2 soon, I believe that he's ready for us to make more progress in the area of sign language. I have no idea what his speech capabilities are going to be. At this point he only has a handful of sounds. So, while we continually work on the oral, I think we need to put more effort into the signing. I talked to his teacher today when she was here for therapy, and she had some great suggestions and ideas for how to incorporate more signing into our daily routine. I'm a little overwhelmed by the task of learning more signs and routinely using them, but I'm also a little excited about it. Knowing how well Judah has responded to signing already, I believe that he'll make great progress here...on his timetable;) This is a new challenge, but with God's help I can do this, and so can Judah. And little Miss Lydia will make the challenge much more enjoyable (and hilarious) as she learns the new signs with me!