Tuesday, October 20, 2009

Judah's Belly Laugh

I couldn't resist uploading this video! The Boys were just being silly. Who knew it would inspire Judah's very first all out belly laugh?! His laugh was so contagious he had Jared and me going, too! I just had to share this:)

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GOD. IS. GOOD.

Saturday, October 17, 2009

Tickle Me Judah

Two days ago I discovered that Judah is a Stewart through and through. He's ticklish!! This is the 3rd time we've been able to make him laugh. I got this video just last night. Oh my goodness he's just too sweet!!
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Latest Therapy Session

On Wed. Judah had therapy. We've been focusing primarily on developing head control. After talking to his therapist for several minutes about how he was doing, she sat him on her lap. To my amazement and delight, Judah sat there holding his head up! I've been so careful with him, not wanting to inadvertently hurt him, that I didn't realize how far he had come or how much strength he had developed! He's still wobbly, and will drop his head forward sometimes, but he can lift it back up and look around a little! And he looks so adorable!! I'm so proud of my little guy! So, this vidoe is just to show off...

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Close Call

Thursday, the 8th, was a big day for Judah and me, nearly ending in Judah's first hospitalization since the NICU. What started out as just a routine 4 mo. wellness check that morning, ended up as two 3 hour "stints" at the Children's lab and ER. It all kinda started on Monday when Judah had his follow-up with the kidney specialist. The culture from his urine sample (a Bag UA, they call it, because they got it by sticking a little urine bag to him...pleasant image, isn't it) came back "suspicious". Anyway, by the time Thurs. rolled around, I needed to talk to the pediatrician about his elevated glucose (from Mon.) and his culture. The dr. didn't know any specifics about the culture, but because his glucose was high we had to postpone vaccinations (again) and go to the lab to get more blood work. Then I had to wait at the lab with my 3 youngest children for the results from the blood work, because if his glucose was still too high we'd have to go upstairs to see his Endocrinologist to have him look at Judah and change his Hydro cortisone dosage. Sheesh. Finally the results came back: Normal! Time to go home:) My whole morning was blown; but the kids were great, and McDonald's was right on the way home! That evening, right in the middle of fixing dinner, I got another call from the ped. Apparently, that morning Judah's potassium had come back high - too high. (I didn't realize that any time any of Judah's blood work comes back abnormal, especially with his electrolytes, they have to re-check and re-check until it's normal.) So, I needed to get him to Childrens right away for another round of blood work to make sure it hadn't gotten any higher. It was a 6.5, and 7+ means he needs to be admitted so they can monitor his levels and his heart. (Didn't know that too much potassium can adversely affect your heart.) They also wanted a cath. UA on him to double check his urine for a lower UTI. So, back to Childrens I went with him. I had to take him to the ER for the catheter because the nurses upstairs aren't available for that after 5 (on an outpatient basis). The lab came down to us; how nice of them:) Judah was a champ, as usual. I wonder how many times in my life I'm going to have to hold his hand and watch while a nurse inserts a catheter. This visit was another 3 hours by the time the call came back from the ped. that his levels were back to normal and we could go home. Yay! It was a long, tiring, somewhat frustrating day, but I praised the Lord all the way home that we were actually going home! On Sat. Judah's culture came back with 2 different bacteria - infection. So, even with a prophylactic dose of antibiotics, Judah will still get an occasional minor UTI infection. At least it's not in his kidneys. And, I'm praising Jesus that the infection is minor enough that he had no symptoms! I truly believe that God's hand is on Judah, and He is protecting him.

When all is said and done, I just had no idea that the combination of these 2 diseases - Hypopituitarism & Chronic Kidney Disease - would be so complicated and so involved! A tiny little gland in the middle of your brain, the pituitary, directly or indirectly effects pretty much every other part of your body. And obviously your kidneys are pretty darn important, too. I just didn't know. BUT GOD... God knew. God knows. He knows the inner workings of Judah's body intimately and perfectly. He designed Judah. And just the other day, as I was looking at Judah, God hit me with this truth afresh: God created Judah for His pleasure, His glory. He sees Judah in a way that I can't. He sees him whole and well, the way that Judah one day will be. And he sees beauty in Judah right now. Judah is beautiful. It's a weird dichotomy that I now live with on a daily basis: I pray for healing, and mourn the fact that Judah has a difficult, challenging life ahead of him...but I wouldn't change him for the world. He's my precious, darling boy.

I'm so thankful that on a day-to-day basis Judah is healthy. He's not constantly battling for his life. He's not sick. He's happy and content. I thank God every day for him.

Monday, October 12, 2009

Judah's First Snow Day

It's just so wrong on so many levels that we woke up to 3 in. of snow on October 10; and it kept on coming. However, it was fun to take Judah outside for his first snow day! He looked too cute all bundled up! The other 3 had a blast sledding and snowball-fighting with Daddy & "Mr." Nate:) They were all outside for a good hour, while "Miss" Erin & Abby, Judah & I hunkered down inside for good conversation and little baby nap time. What started as a morning of shock and awe and even disappointment over the early snow, turned out to be a very fun snow day!!
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Good Grief

As is so often the case, a new post to my blog is just the beginning of processing a truth, or truths, that God is trying to show me. My post on grief was no different. Since I wrote it, God has been impressing on my heart that I wasn't finished...or He wasn't finished. What I wrote is very true. But I missed another truth about grief. An important one. Grief is good. Had Adam and Eve never sinned, grief never would have been a part of our lives, our world. But they did sin; and that thrust the whole earth into a long season of groaning and grief. Creation itself has been effected by sin and grief, and what we see is a mere representation of what awaits us in Heaven and on the New Earth. [So cool considering the fact that I have seen some breathtaking beauty on this earth.] Anyway, I'm beginning to understand more and more that grieving and lamenting is a very important part of a believer's life. I believe it's one of the most effective methods God uses or allows to get our attention, to draw us closer to Himself, and to increase and intensify our desire to be Home with Him. We're supposed to live with an eternal perspective, and hurting in this life definitely serves to make me more acutely aware of that. Grief is a powerful tool that God can and does utilize to deepen intimacy with us; and then bring us to the point where we can more effectively encourage and minister to others because of the grief we've experienced and He's brought us through....eventually. The timing of that will be different for each person, in each situation. So, I've made the conscious decision to continue to embrace the grief that I experience over Judah. As well as any other grief God allows into my life, because I know that as I embrace it, and run to God with it, He will accomplish His good work in me. I will grieve, mourn, and lament as only a believer can, because I know what this world was meant to be, groans for and longs to be, and what this world will someday be. And who I will someday be!

Gifts

James talks about every good gift coming from above, from the Father. Matthew and Luke say that if an earthly father loves to give their children gifts, how much more so their Heavenly Father loves giving them gifts. (My translation!) Of course, these guys weren't exactly talking about vans and play sets, but I believe that the principle applies, and that God absolutely loves to bless us! We are His children and He delights in us. His definition of "good" is often very different from ours, but we can trust Him completely to give us His good. Last month God provided a 2003 Honda Odyssey for us. A dream van for the Stewarts! Never thought we'd ever actually have an Odyssey, but God knew our hearts and made that happen for us. (Thanks to Dad...and many, many hours of "putzing"!!) Every time I hear that Honda engine start up, or look at the low miles, or push the button to open the automatic doors, or enjoy any number of other little luxuries I thank God again for this good gift. The other gift God gave us last month was a beautiful "new" play set! A dream come true for our older 3 kiddos, and a gift that presents wonderful possibilities and potential for Judah later on! God enabled us to buy it used from a friend's neighbor, utilizing a financial gift from some other dear friends that we never saw coming! I love to see how God works; how He chooses to move His money and resources around to bless us and others! God is good all the time, and all the time God is good. Regardless of the circumstances, what the day looks like, the questions, this truth will never change. I'm so thankful that God chooses to bless us in ways we never anticipate, and at just the perfect times!

Thursday, October 8, 2009

For the Joy of Judah

I have been enjoying Judah more and more. He is truly such a delight and a joy to be around! He is very content and rarely fusses. People at the lab or various doctor's offices are always commenting on what a little champ, sweet boy, or adorable baby he is...while they're poking and prodding him, and he's laying there without a sound of protest! Seriously, he's amazing! God either gifted him with an extraordinarily sweet disposition, or a very high pain tolerance...or maybe a combination of both:) I have had so much fun with him lately. He smiles so easily and has the cutest, most endearing smile of any baby!! God has allowed me to thoroughly enjoy just Judah; I have been able to look past what he's not doing - holding his head up, focusing, reaching out for me - to see the beauty of who he is just as he is! God has enabled me to accept more and more each day the fact that Judah is on his own timetable. I don't consider him to be "delayed". He is right on time according to the timetable that God has created for him. Our little lion. I love his squishy, squishy cheeks, and his eyebrows that go up and down to convey all kinds of emotion! He is so easy to kiss and squeeze and love all over. He invites it just by being his little sweet self. I just can't seem to keep my hands or lips to myself! His brothers and sister have that same "problem"! I love his tiny, tiny feet. They are growing up faster than they are growing out! And his chubby hands and fingers - all 12. Judah is just so very special.









We were at the doctor's office for his 4 mo. wellness check this morning. An appointment that was scheduled for 8:45 and ended at Childrens at the lab at 11:50. I will never again take for granted a simple check-up! Everything is fine, but it was a looong morning. Good news is he's now 9 lb. 13 3/4 oz. (before his breakfast) & 21 in. long. He's growing and thriving on just the milk that I'm pumping; an accomplishment I am very proud of! And I'll just continue to thank God that we get to enjoy this "newborn" phase awhile longer:)

Tuesday, October 6, 2009

Evie

Evie is a beautiful, special, tiny little girl that needs much prayer right now. Her mom Lindsey and I have forged a special friendship through the commonality of pain and grief over our little ones; as well as rejoicing in them. We found each other through our blogs, but we have the privilege of going to the same church and seeing each other there! John and Lindsey have an incredible story and a testimony to match. Their little Evie is just over 2 weeks old, was born with a form of skeletal displaysia, and was just rushed to Childrens for some severe complications and symptoms. She is currently in the PICU (Pediatric ICU). I would encourage each of you to look at Lindsey's blog, www.eviejayne.blogspot.com. Lindsey has been a tremendous source of encouragement to me many times as she has trusted the Lord on their journey with Evie. She is a beautiful woman of faith and grace, and you would be blessed to follow their story and see how God has worked and moved in their lives. You would also be equally blessed to know Evie, if even just a little bit. So, please pray!

"...so that there may be no division in the body, but that the members may have the same care for one another. And if one of member suffers, all the members suffer with it; if one member is honored, all the members rejoice with it." 1 Crointhians 12:25-26

Monday, October 5, 2009

Kidney Follw-up

A little over a month ago I requested most of Judah's medical records from Childrens so I could have that stuff on file. I wanted his EKGs, EEGs, MRIs, lab results, and other reports from doctors & specialists that saw him so I could have a more complete medical history. I also thought it might come in handy to keep up with this stuff as we go along, since we see so many different specialists. Not sure this was one of my better ideas. First off, the records they sent me - just the ones I asked for, not even everything - was 135 pages long. Second, I just don't think I can keep up with everything. There are too many appts. and labs. If a doctor wants something, they can ask another doctor for it. There. I'll try to keep track of the bigger things. Anyway, as I was reading the report from the nephrologist, I discovered a very unpleasant surprise. It shouldn't have been a surprise. The very first line of the report said that the doctor discussed this with me...I just have no recollection of this conversation or diagnosis. Judah has chronic kidney disease. A little more complicated than the "fixable" kidney issues he has as well. So, he'll be followed up on a regular basis to make sure that his kidneys are functioning well enough to keep up with his growing body, and to make sure that they're actually growing. Thankfully, unless he ends up with an infection, we don't have to see this dr. for another year now; and the urologist will also follow up in February. So, this new information has added another dimension to what Judah faces in the future, both near and distant. Right now, thank You Jesus, Judah's kidneys look o.k. On ultrasound there was actually some improvement since she saw him in the NICU. They are underdeveloped, they don't function at 100%, and they are deformed, but they're working right now:) He had a high white cell count in his urine, which is a sign of infection. Since he's not symptomatic, she said it could be just a minor lower tract infection. My prayer is that it's nothing. I know God can wipe out a matter of a few extra cells. No problem. So that's one of my prayers right now. As long as Judah is infection-free we don't have to think about a repair surgery until he's 5. (That would be for the reflux, not the disease.) Anyway, the other concern she had was the low glucose level in his blood. Not sure where this is coming from, because his hormone replacement should be taking care of those levels as well. She said this could be an indicator for a metabolic problem...not even gonna go there right now. She's sending her report to the pediatrician who we see on Thursday. I may have to start checking his glucose levels on a regular basis for awhile. We'll see what Dr. A. says. So, today brought good and not so good news. BUT GOD... God knit Judah together and knows him intimately. He knows every "weakness" that Judah's body has, and He is able to either bring healing or sustain Judah (and us) through anything he faces. And of course there will be a day when He brings perfect healing for Judah's body. What a day that will be! For now I rest in the truth that God is in control and has ordained every single day of Judah's life, whatever that may look like with his significant diagnoses. Every day is a gift, because Judah is a gift. Speaking of which...some little one is hungry...