April Shower

**This is dedicated to the one I love**

DISCLAIMER:

Desperate times call for desperate measures.

So don't judge us!

I have been looking forward to being able to write a post about another area of Judah's progress. Progress that only a mother could really, truly appreciate. I couldn't wait to finally record for history the day that Judah "showered" me with... Well, here's the story.

At the end of April Jared and I had the opportunity to go out on a date, a rare treat. He had gotten a gift certificate for a new restaurant - an upscale pizza place - and we were really excited to get out for an evening of new food and good conversation...just the 3 of us:) The evening was going well. We had been seated, had looked over the menu, asked a dozen questions since half the menu consists of genuine Italian ingredients, and had just ordered our pizza. While we eagerly anticipated said pizza, I remembered that Judah needed a diaper change. I suspected that this one was of the stinky variety...but wasn't entirely sure. Just to play it safe, I declared that it was Jared's turn to change him, and would he pleeaase? That husband of mine, being of the wonderful, amazing, helpful, hot (which I realize has nothing to do with whether or not he'll change a diaper, I just like telling everyone that I'm married to a hot redhead) variety, graciously agreed. I grabbed the diaper bag for him, but upon checking for the wipes and diapers, I found to my utter horror (and embarrassment, I might add, striving to be the kind of mom who is on top of everything all the time [laugh out loud here]) that the all-important diapers were nowhere to be found! What to do? What to do? Enter the desperate measures needed to survive this desperate time. I advised said hot husband to just go ahead and check him. "I'm sure he's probably just wet." And if not? Well...just...cleanhimuprealgoodandwipeoutthediepaerandputitbackonandwe'llneverspeakofthisagain. "But really, I'm sure you won't have to do that." So, away they went to the bathroom. A couple minutes later our mouth-watering pizza arrived. A couple minutes later...I was still sitting alone, salivating over this pizza. A couple minutes later...turned into a couple more...and a couple more...and a couple more...until finally I texted my brave, unbelievably capable hubby, wondering if everything was alright. I kept looking over my shoulder at the bathroom door, waiting. I actually wondered if some people in the restaurant were starting to feel sorry for me, thinking I had been stood up or something. Finally, here come my men, BIG and tiny. Upon seeing my darling husband's face, I realized that all was not well. He deposited my adorable, now clean, boy in my lap. And began thoroughly and vigorously sanitizing his hands...even though he had washed with soap in the bathroom. The word "unclean" comes to mind. I'm pretty sure that's how he was feeling. He proceeded to tell me that the men's bathroom had no changing station. So, being the resourceful man that he is, he decided to change Judah on the counter - the 1 foot wide counter. [Here's the part I can't get through without laughing!] That wonderful husband of mine took off Judah's diaper, Judah's very full, stinky diaper, and was rewarded with Judah's first little boy shower! Pants, flip flop, foot - nailed. Ignoring his own desire to be pee-free, he valiantly cleaned up Judah, wiped all the poop out of the offensive diaper, and put said diaper back on that cute baby fanny. Needless to say, this amazing, roll-with-the-punches kind of guy was not exactly thrilled when I shot my hands in the air and cheered over Judah's newest accomplishment. He didn't really appreciate the fact that I was laughing out loud either.

He can laugh about it now, though. Sort of.

After my hotty was thoroughly sanitized and antibacterialized we commenced with our dinner and enjoyed the rest of our evening. One that we will surely never forget!

A Good Laugh!

Judah is by far the happiest baby I have ever seen! I mean, this child is just unreasonably & abnormally happy! He smiles more often than not, and laughs at almost nothing. This morning Eli "shot" Jared with a Bionicle. When Jared made his "Oh, I'm shot" noise, Judah just started crackin' up! So, of course, Eli just kept things rolling:)

Randomness

I realized that I haven't really updated on normal every day kind of stuff in awhile. I get caught up in the busyness of keeping track of everyone and staying on top of everything that all of a sudden it's been a couple weeks since I've been here! I constantly have blog posts running through my brain, but actually getting them down "on paper" is sometimes quite an accomplishment. So, while the kids are busy at the table with a game...

Judah has been doing really well since he got over his bronchitis. He's such a fun baby! The kids still love to entertain him and help with him. It's such a joy to watch them interact with him and love him so unconditionally. My heart swells with pride for my older 3 every time they cheer on Judah and celebrate with him over the littlest achievements! He is so blessed to have them in his corner, and they are so blessed to have him in their lives!

Developmentally Judah has made more progress. He's able to hold his head up for longer periods of time and look around. When he's on his tummy he can push his head and shoulders up off the floor and look around, too! And he's an expert at rolling from his tummy to his back...since the little stinker doesn't really like to be on his tummy. He's transferring toys from one hand to another, he's putting his pacifier in his mouth by himself, and he's becoming more vocal. No new sounds yet, but he's definitely trying to communicate more...with his body language, too:) He doesn't like taking any food from a spoon, but he loves biter biscuits. Dip it in baby food and he likes that, too! He has a hard time sitting up straight. I'm not sure if he has difficulty breathing in that position because of the lower muscle tone, but it's obviously uncomfortable for him and he lets me know. So, he's getting a special adjustable chair from his therapists that will allow him to sit in a somewhat reclined position, gradually moving him into a completely upright position. The goal is to get him off his back on the floor and into an upright position on a more regular basis. I've been working with his feet a lot, thanks to the help and recommendations from his PT. He hasn't been able to put any weight on his legs or feet, but after 2 weeks of focusing on that he actually pushed against the floor and put weight on his legs and feet when his PT stood him up on Wednesday - yay, Judah!!

Anticipating Judah's 1st birthday has been fun; but it has also forced me into a reality check that has been hard to deal with. Another phase of grieving. I live in a sort of time warp. I lose sight of Judah's age, and just focus on what he's doing and what we're working on. And I enjoy him just for who he is. But it finally hit me that he's going to be a year old, and he is not normal. I've been struggling to process the fact that I have "a child with special needs" all over again. And then I grieve over losses that I thought I was done grieving over. And I grieve over an unknown, difficult future. I talked about this stuff with Judah's OT, Teacher, & Services Coordinator when they were here last week. That was a very good move, because we went over all the progress he's made since his skills assessment in February, and they were so encouraging and proud of him! They also built me up and said again how lucky Judah is to be a part of our family. (Of course, I believe that God designed Judah to be a very special part of our family, and we are the blessed ones!) Anyway, since talking to them this has been a little easier to deal with; but I'm anticipating that amid all the happy, celebratory feelings I'll have on his birthday, there will also be some sad, bittersweet ones. Well, I guess when those feelings creep up it'll just be time to grab that sweet, lovey boy and snuggle! His smile is good medicine:)

Finally, we have a new manufacturer for Judah's Growth Hormone Therapy (GHT). Genentech, through Nutropin Access Solutions, will now be partnering with us on this journey...so to speak:) I've spoken with our new rep and signed the necessary paperwork; now we wait for them to contact the insurance company and contact a distributor. The process will take 3-4 weeks. So, Lord willing, in June I'll have my "injection training" and we'll be ready to rock 'n roll!

Botox Baby

Yes, my darling boy is now officially a recipient of Botox. Weird. But good! Yesterday we took Judah to Childrens to get the injection of Botox in his left eye muscle. I wasn't worried at all, this being such a minor procedure and my being completely comfortable with and confident in Judah's ophthalmologist, but there's still something about seeing your baby being wheeled away on that bed...and then seeing him being wheeled back to you, all sweet and groggy and beautiful and vulnerable. He just melts my mommy heart. Judah did great. Every person that saw him yesterday from nurses to anesthesiologist to child/family services commented on how precious, adorable, content, or sweet he was. Naturally! The only bummer about the experience was the IV that ended up in Judah's scalp...again. Poor baby is such a horrible stick that the last 2 times he's needed an IV that's where they've ended up. Thankfully they put him out with a mask before they stuck him, but tape in the hair is never pleasant when it's all over. Even with the "anti-stick" stuff they use to get it off. The good news is that the dr. believes that, because of how tight his muscle was, this will produce very good results for Judah! The really good news is that Judah doesn't need glasses right now! Phew! He is far-sighted and has astigmatism, but both "prescriptions" are just under what requires corrective lenses. We'll follow up with the vision stuff in 6 months. He'll need glasses eventually, but I'm hoping it's a far off eventually! In a month the results of the Botox will be at their peak, and hopefully Judah will be able to look straight ahead with BOTH eyes - right at his mama:) Thanks to those of you who remembered to pray yesterday. What a privilege to be a part of the family of God, knowing that we are never really alone, never facing anything on our own, and we are being covered in prayer!

"Patient Suffering"

Our pastor gave an awesome message last Sunday. As I was sitting under this incredible teaching from Scripture, I was thanking Jesus from my heart that all 3 of my children were in their Sunday School classes (a rare occurrence) and Judah was sleeping, leaving me free to listen and absorb without distraction. I knew that this was a message I had to share here! Any of my own thoughts I'll put in italics, lest someone think that I'm much smarter or more eloquent than I really am;) Hopefully I do this "recap" justice.

The message was based on Romans 12:12, focusing on suffering.
1. Suffering strengthens character
- Rom. 8:28-29, 5:1-5; James 1:2-4
- It develops spiritual maturity (something that a "pleasant" life does not accomplish)
- If we respond in the right way, suffering will soften our hearts

2. Suffering deepens our compassion
- 2 Cor. 1:3-4
- God knows us intimately in our suffering and comforts us. Because of the comfort we
receive from Him, and because of Christ in us, we are able to comfort others

3. Suffering, handled with grace, strengthens others
- Phil. 1:21-24
- Our lives become proof that God really does care
- Our lives encourage others to persevere
- Eph. 3:10
- Our lives glorify God before an invisible spiritual world
This verse and principle was new to me. I don't think I had ever heard this before, but it's really cool! To think that the way I handle suffering is being observed from the spiritual world is...humbling...overwhelming...a little daunting. Even when I'm all alone, and I think no one is watching, no one remembers, these beings are "glued to the set". Who am I to warrant any attention like this? I am His bride, made in His image, a picture of His grace and glory. Wow.
- He then shared a quote from Joni Erickson Tada that was amazing. She wrote about a man
who suffered alone in his home, and yet he wasn't really alone. He silently gave glory to
God before the spiritual realm. It was a pretty powerful example.

4. Suffering raises our confidence in Christ
- What was once just words and promises we read in Scripture about God's faithfulness and
goodness, etc. become conviction
- It raises our confidence in God's faithfulness (trial after trial produces a deep & abiding
confidence; one that only suffering can produce)

Now that I see this "on paper", I see that I really didn't do this justice. How do I share this message that was so powerful to me, and spoke so poignantly to my heart?! These are some of the thoughts that I had as Pastor Steve was teaching:
*Jared & I have gone through several significant trials, and have experienced pain and suffering we never thought would be ours. As we look back it's obvious to see that God only allowed what we could bear (which He actually bore for us) at the time. Each trial was progressively harder, but because of what God taught us and faithfully brought us through, we were prepared for the next. Well, as prepared as we needed to be.
* I DO NOT want these last 18 months to be wasted! I want my heart to be soft. I want to be marked by my compassion for others who are suffering. I want to be known for a gracious spirit. I want to reach out to others and be used by God to bring about change for someone else. This experience with Judah has been a phenomenal one in so many ways, and I want God to use it to the fullest!
*I think the statement that could best be used to describe the purpose of suffering is this: Suffering deepens our intimacy with Christ and our passion for Him. It gives us an acute awareness of our desperate need for Him!

After the service Rob led us in this song. Definitely a new favorite!

"God Be Praised"

by David & Alena Moore

You saved my life from death

When I was all but defeated

You spoke Your promises

And brought life to my weakness

Came as a conquering king

And You warred for my freedom

My soul can't help but sing

Hallelujah

You opened up my eyes

For the first time I saw You

Your love commanding life

And deserving devotion

You told me who I am

Now in faith I believe it

My soul can't help but sing

Hallelujah

You've made a place for me

Silenced all my accusers

Leading me forth with peace

Filled with joy I will follow

Your cross demands my life

Now Your grace is my anthem

My soul can't help but sing

Hallelujah

Hallelujah, we're redeemed and made free

By the blood of the Lamb we have won

Hallelujah, we will sing victory

Jesus conquered the grave

God be praised

Nephrology Update

When I get good news from a specialist I absolutely have to write it down! Judah had a 6 month follow-up with his nephrologist (kidney specialist) on Thursday. This appt. was cake! She asked me some questions, I asked her some, we talked some more...and then she said that Judah is really looking well! Bottom line: he needs more fluids for his sad little kidneys, but we don't need to see her again for a YEAR! Well, barring some unforeseen complication or something. Still, a YEAR people! That is amazing. And that's all I have to say about that.

Can you believe it?!

Judah's turning ONE!!! This precious little one that has so completely stolen our hearts - and the hearts of people all over the world - is going to be a year old in just 4 short weeks! We never "officially" celebrated his homecoming from the hospital, so we are going all out to commemorate this first year that God has faithfully brought us through. God has given us so much joy because of Judah, and has taught us so much through Judah! I think, though, that out of everything I've learned, God has really narrowed my focus down to love. Sacrificial love. Unconditional love. True love. Love that sees beyond appearances and challenges. Love that goes beyond circumstances.

In Judah, God has given me a clear picture of the preciousness and beauty of life. Regardless of the circumstances, every child is a blessing, a gift. Every child is inestimably valuable because he is created in the image of God and loved by Him. This is why we're collecting items for the AAA Crisis Pregnancy Center here in Omaha for Judah's birthday. We want to share this message of Love with others.

Judah's life is so precious to us; priceless, a gift in every sense of the word. We are going to CELEBRATE!! Won't you join us?

Judah's 1st Birthday!!!

Digital invite personalized with Smilebox

Urology...Ugh

Today was Judah's big urology "work-up". VCUG, blood work, and a visit with the doctor. It was awful. The VCUG is a test they run by inserting a catheter and then pushing a dye through it to see how the kidney reflux is...doing. They look at the ureters and kidneys, the bladder - everything. The catheter was the problem. Without going into detail, it took several attempts to get the cath in, and by the end of it Judah was hurting, and so was my heart. I hate appointments like this. I know that tests like this are important (they help the doctor determine how Judah is doing and whether or not surgery is necessary sooner than later), but at the time it just really sucks. I'm helpless. Judah is strapped to this little "baby rotisserie" and all I can do is hold his pacifier in his mouth, hold his hands, and talk soothingly to him. And pray. I did a lot of that today. I told Jesus that I know He's with us right then and He sees Judah. He knows what's happening and He cares about it. Won't You do something? Won't you allow them to get this thing in without anymore discomfort to Your little cub?! While we were waiting for the urology resident to come down (they had to call urology upstairs because no one in radiology could cath him) I got to cuddle Judah for several minutes. It was then that I took advantage of my unlimited texting:) I texted Jared and 5 very important women, asking them to pray. So, when the worst part came, I knew that not only was Jesus with us, but we were being covered in prayer as well. That really meant a lot. Thankfully the resident got it in - finally - and they were able to complete the test. The reflux hasn't improved at all since birth, but since the daily antibiotics are keeping him infection-free we don't need to talk about surgery any time soon - praise the Lord!

Another thankfully: the blood they needed only required a finger poke! A piece of cake, considering:)

The prayer in this area of Judah's health continues to be that the antibiotics will keep him infection-free so that he can avoid a surgical repair until age 5. And I'm praying that there won't be any need for another catheter until his next VCUG a year from now.

Thanks, Lord, for coming with us today. For lovingly holding Judah in Your hands...and me, too. Thanks for caring about the details...every one that's so complicated for this little lion. Thanks for placing faithful women in my life that love You and me and Judah. I love You, and I'm so relieved and comforted to know You!