Tuesday, November 29, 2011

Urology Friday

The Friday that Judah got all his tests done went pretty well. It was an extremely looong day, and it was definitely difficult for Judah; but he did great, considering everything he had to endure. He continues to blow my mind. That he can go through everything he does, and yet bounce back so quickly and still be so laid back and jolly is a mystery to me. Sometimes I wonder if God somehow protects him mentally and emotionally from all of these things. Maybe some people would just say that his "simple mindedness" is just part of his handicaps; but I tend to believe that what we see as simpleminded is really purity, innocence, and an intimacy with God that we can't experience. Hmmm... I could be wrong, but...something like that. Anyway, I took photos throughout the day so you all could appreciate a little better what these days look like for Judah. And me, too, as his mama.

We spent the majority of our time in Radiology, switching rooms as necessary. (We were at Children's from 10:40 to 3:45 that afternoon.) The 1st part of our "journey" was a renal ultrasound. After having so many of these done over the summer when he was so sick, Judah has decided he doesn't like these anymore. He does NOT appreciate being told just how and where to lay down...until they tell him to lie down on his tummy. That one he doesn't mind. So, I was busy distracting and comforting him for the 30 or so minutes this test takes. Then we had about 15 minutes to cuddle before we moved on to the prep. for Nuclear Medicine.

A Child Life Specialist brought Judah a portable dvd player while we waited, and he had fun watching "Baby Einstein". [Props to the CL Specialists at Children's! Their job, simply put, is to educate and comfort. They make sure to answer any questions the child or parent might have, and then they do whatever they can to make sure the child feels safe, comfortable, and happy. They do a great job! AND I LOVE that they treat Judah with dignity and respect, and as if he were like any other 2 yr. old. All disabilities aside.] Judah needed an IV for the Nuclear Med. test, and I after I emphatically stated that Judah is a horrible stick, the nurse took it upon herself to page a nurse anesthetist. She was able to come down and get the IV in one poke! Always a big deal:)

We then moved on to Nuclear Med. I was anxious about this test, because I knew that Judah would have to have a catheter put in and then get strapped to a board (which I have affectionately termed the baby rotisserie) where he would stay for a solid hour. We took the dvd player along with us, and that worked for awhile; but I knew that Judah was already tired from everything that had gone before, so I turned it off mid-test, gave him his GloWorm, and watched him slowly drift off to sleep. Thankfully, the last 26 minutes of that test were very peaceful for him. He got to say good-bye to the IV when this one was over.

Our last stop in Radiology was for a VCU. Judah had to stay on the baby rotisserie for this one, too. They carried him on it from the Nuc. Med. room to this one. He was on that thing for over an hour-and-a-half! Ugh. This test uses a chalky substance to show the severity of his kidney reflux. The chalk goes through his system - it's pretty wild to see this on screen - and you can see it backwash up into his kidneys...all while they prevent him from urinating. I know it's uncomfortable for him, but I'm not sure what's worse: the chalk and inability to pee, or the baby rotisserie rotating him from side to side. Again, ugh. My main job on this day was to distract, distract, distract. This time I used an Elmo phone. Not super effective, but that's what worked best. At the end of this test he said good-bye to the catheter, and then the rotisserie! We were both so happy! For the first time ever, he got to pick a prize from the big toy box in there! He got a new slinky:)

We finally made it up to the urologist's floor for our appointment around 2:15. We ate a little lunch in the waiting room and just relaxed. It was good to see the doctor again. I hadn't touched base with him since Judah's last hospitalization. His report was mostly good...and all at least "to be expected". Judah's kidneys don't look any better (renal ultrasound), but their function has improved since the procedures from over the summer (Nuclear Med.). His reflux/chronic kidney disease prevents any marked improvement or progress, so that's something that we won't see until sometime down the road...way down the road. His reflux shows very minimal improvement (VCU); as in, he went from a grade 5 to an iffy grade 4 1/2. The dr. is still hopeful, however, that he will make it to age 5 or 6 before he needs to have that repair. The best news is that we don't have to repeat any of these tests for a whole year! The ultrasounds and VCU have been at least every 6 months...although Judah did have 4 or 5 ultrasounds this summer.

We made it home by 4:00. When I came up the steps to my backdoor I saw a box. With my name on it. Just waiting for me at the perfect time. Anyone who knows me - reeeaaally knows me - knows that one of my favorite things in life is packages! I eagerly anticipate the arrival of the mail. Each. Day. Because you just never know what the mailman might bring you! Today he brought a package from 2 of the sweetest girls on the planet who have decided to take me under their wings for a little while...so to speak anyway. They filled this box with things that would spoil me, and they blessed my very soul. Yummy bath stuff, 2 soft scarves, & 2 pairs of fuzzy socks. These girls' gifts were obviously divinely appointed:)

Jared came home a little while later with the 3 older kids and the pair of slippers I had picked out at Target. Again, perfect timing.

It's always such an encouragement to me when I remember - or am so blatantly reminded - that all the time that I am caring for Judah, trying to see to every detail and meet every need, God is caring for me. He sees to every detail and meets every need...and many desires. I really believe that that care package was designed by God, and it & the slippers came at the exact moments that I needed them. God, You are so good.

Judah ended the day with a nice warm bath, and lots of smiles. Naturally.

Thursday, November 17, 2011

Boys Town 2011 & Lid Surgery

Before I dive into Judah's clinic visit from the 11th, I have a prayer request. Judah has a tummy bug today. My prayer is that he'll be over this by tomorrow morning, because he has a complete urological work up at Children's. We'll be there from 10:40 A.M. until sometime after 3. We'll be in Radiology twice for different tests, Nuclear Medicine, and then with the Urologist. It won't be a fun day for Judah, but it's all necessary to monitor his overall urological health, which also effects his kidneys.  Pray that Judah will wake up feeling 100% tomorrow...otherwise, it will be a long time before this can all be coordinated again.

Judah had a good morning at Boys Town this year. It was also our shortest clinic visit ever! He was scheduled to see 8 specialists, but we only had to see 6:) Overall, he's doing well. The speech therapist was very encouraging about the sounds he's making; however, it's impossible to know what kind of sounds to expect from Judah post-palate repair, because his development is all over the chart. He doesn't have a specific delay age...like, he's at the developmental stage of a 12 month old. He hits marks from infant all the way to 2 1/2. So, rather than work off of expectations, we'll just keep doing what we're doing, always challenging him and trying to push him farther. She also gave us some very practical ways to help Judah learn new sounds and words - things we can do each day. The hard part of the morning came when we saw the plastic surgeon (not the one who does Judah's surgeries, but an associate). Judah's repair is open. As soon as I saw it I started to cry. The information we got from the surgeon and the speech therapist regarding the opening was encouraging, but still. At this point we don't know if the opening goes all the way through to the nasal cavity, or if that cavity is still closed. That makes a big difference in whether or not the opening will need to be repaired at all. I won't know anything for sure until we see our surgeon again. The healing process is still not finished, but I don't expect any miracles. That sounds...hopeless. I'm hopeful that his nasal cavity is closed and he won't need another repair. OR, if it's open, that he won't need another repair until they do the bone graft at age 7 or 8. We'll know more after Thanksgiving.

I would really appreciate prayer for my heart in this. It's so hard to be just 4 short weeks past surgery, and have to say, "OK, Lord, have Your way." I don't want Him to have His way, because right now I don't like it. I believe that His love for Judah is so great - unfathomable - that His plan is perfect, that His way is best. I really do believe that. I'm just having a hard time making the heart connection right now. It's hard to make the conscious choice to come to Him with my hands held open, surrendering my desires and Judah, when I don't feel like it. Buuut...I think a lot of my growth in Christ happens when I respond to Him even when I don't feel like it. Especially when I don't feel like it. *sigh*

We saw the UNMC eye specialist this last Tuesday. I like him. He reminds me of my family practice dr. in WI, because he took the time to explain details and even draw diagrams:) I got a good education from them both! I now understand the congenital condition Judah has in his eye muscles. During his development in utero, he developed mostly scar tissue where muscle should be. That explains why his muscles don't work correctly, and why he's a great candidate for surgery. Actually, if he doesn't get the repair, he could have vision problems in the future. There are risks - there are always risks - but based on the information we have from his ophthalmologist & this surgeon, and both of their recommendations, we're going to do the surgery. He doesn't operate at Children's (I'm anxious about that), so we can't combine it with the tube replacement. Both of these procedures are quick and done on an out-patient basis, so I guess that's good. I'm not crazy about all this. So many times under anesthesia. Last night I was thinking about all the surgeries, minor and major, and realized that we don't have an end in sight. There's always something, just down the road a bit.

When I think back to being pregnant with Judah, I remember asking God to heal him only if that brought Him the most glory. But now I wonder, why? Why did He choose Judah to glorify Him in this way? Why not just bring him Home before he ever had to experience one yucky thing in his life? What is it about a sick child that brings Him so much glory? Doesn't it bring Him at least an equal amount of pain to watch His child suffer? I just don't understand Him in His sovereignty. I'm overwhelmed when I think that He finds me worthy of His refinement, worthy of bringing Him glory; but I struggle when I have to come to grips with the fact that Judah is just a child. He doesn't understand any of the things that I do about God, so Jared and I are his only lifelines. And we're not enough. I don't know if I'm even making sense anymore. These are just things I wrestle with...somewhat regularly.

There is so much freedom in surrender...but it's impossible to surrender without the work of Christ in me. I want to cling to Judah and what I understand to be fair and right. Christ's surrender in me says to rest in His sovereignty. Rest.

So I say...


Sunday, November 13, 2011

He's a Writer

Jared still writes me letters. Weekly. I haven't counted recently, but I don't think I can add 1 more letter to the pile that has grown in my sock drawer. (I'm looking forward to going to Hobby Lobby to find a special something to keep them all in.) A few weeks ago, as I was reading his latest letter, it occurred to me that Jared has really grown in his writing. When he first started writing to me over a year ago, his words didn't do the heart of the letter justice. Writing - expressing emotion, conveying heartfelt appreciation, & beautiful words - didn't come easily to him. I never doubted that he felt all of those things and desired to clearly communicate that to me; he just didn't really know how. But now, having written numerous letters over so many months, he has developed the ability to express beautiful, meaningful, tenderhearted, loving words that continually blow me away. He's learned how to express his thoughts and feelings in a way that speaks to me, the woman I am in my soul. He's become poetic. He's even found writings (he won't tell me where) that seem to have been meant specifically for me. He's a writer.

The best thing I can equate it to is the woman who has married a sports fanatic. She doesn't really care about sports; but she loves her man, so she doesn't make a big deal about the fact that he wants to spend Saturday watching football...or whatever. Because she loves him so much, she decides to watch the games with him. She listens to him when he talks about the latest news in athletics. She even buys herself a t-shirt supporting her husband's favorite team. Before she knows it she has become an avid sports fan, anticipating watching the next game with her husband and keeping up on the news with him. She has become a fan for her husband, because she was already a fan of her husband's.

When I talked to Jared about it he said he didn't intend to become a writer from the beginning. He said he never thought about it like that. I think that's amazingly cool; because he started writing letters just for the love of me, without any thought for himself. His letters have taken on deeper meaning now that I see what he has become, the skills that God has honed in him on my behalf. This relationship that we have in letters really benefits us both. I love that.

Just another reason I believe Jared to be the most extraordinary man on the planet. I am so rich.

Tuesday, November 8, 2011

Judah's First Word!!!

We were at ALDI yesterday, and Judah was holding my notebook in the cart. He dropped it, so I said, "Uh-oh!" And then - oh, music to my ears - he copied me! We said it back and forth to each other several times, and he started giggling, and Lydia and I were clapping, and it was awesome! He can't actually make the "uh-oh" sounds, but he understands the intonation and the context and he grunts it. Totally counts!!! I'm so excited for him...and for us! I can't wait to see what he gets next --- MAMA!

I think he's almost back to his pre-op self. He's sleeping almost normally - thank. You. Jesus. - and he's eating a lot better than he was. He's definitely back to his silly, giggly little self:)

He had PT yesterday and did awesome in his walker! I've had a hard time working with him in there, knowing exactly how to motivate him to move forward and work a little bit. Yesterday we found his game: chasing Lydia from one side of the house to the other. It was hilarious to see him stepping, finding his own little rhythm that swaggers from side to side. Too cute for words! I'll have to get it on video. He made some great strides yesterday, and I think is finally starting to grasp the concept of moving himself forward.

I had a cool moment with Judah the other day. It's something that most people would never even notice, but it struck me as a special moment of normalcy. I kneeled on the floor, and pulled him up onto my legs. I reached forward to put his shoes on...and right there, as he was tucked up against my chest, watching me put on his shoe I realized that this was something so normal. Something I would do with any other little 2 year old. Something so mundane under any other circumstance; but a moment in time that I really appreciated sharing with Judah. I don't know if this really makes sense on paper, but I'm so glad I had that moment of clarity and reflection with him. It was a moment to thank God for Judah and all the normal, mundane things we get to do with him. There was a time when we just didn't know...

I appreciate your prayers for Judah's upcoming procedures.
1. That schedules would coordinate so Judah can have his tubes and lids done at the same time.
2. That he'll stay healthy for the procedures. No ear infections because of the fluid!

Wednesday, November 2, 2011

YIPPEEEEE!!! (Palate Recovery #5)

The plastic surgeon looked at Judah's repair yesterday and feels confident that this one will hold!!! Everything looks good, and in another 3 weeks the repair should still be intact...which means NO MORE PALATE REPAIRS!!! Praise God!!! Once this recovery is over we can pursue another swallow study and see if Judah is still aspirating. I can't believe that he might actually be able to move past all of this! If he doesn't aspirate with a complete palate, that changes everything for him! That means regular liquids, which means drinking fluids on his own, which means moving towards removal of the Button! OK, I'm getting a little ahead of myself here, but an intact repair is just the beginning:)

On Monday, the ped. said the upper respiratory stuff is related to the fluid behind Judah's ear drums. He's on a short course of antibiotics and we can start weaning him off the breathing treatments again. I also found out that Judah might be able to have his eye and tube procedures done at the same time. So, we don't realize the "dream" of just 1 procedure. I'm OK with that, because just 1 anesthesia is better any day...and they're both outpatient, so yay!

Speaking of the eye stuff... I got a copy of the letter that Judah's ophthalmologist sent to the surgeon, so I now have the diagnoses written down! All of the individual eye complications have been put under an umbrella diagnosis called "congenital fibrosis of the extraocular musculature". Meaning: developmental delays of the eye muscles from birth. (I think.) I also found out in this letter that his geneticist thinks he has a type of "holoprosencephalic syndrome with polydactyly hypopituitarism and clefting of the palate". All I understand of that is extra fingers, no pituitary gland and cleft palate. We'll have a chance to talk to her at Judah's annual Boys Town visit with his craniofacial team next week.

Judah is doing a little better each day. 3 nights out of the last 7 he slept until 4:30 before coming into our bed. [So thankful for that nice, big king-sized bed!] Last night he ate his 1st full supper since surgery, too! He still consistently refuses breakfast...but he's never been a big breakfast person anyway. Not sure how that happened! I mean, he is a Stewart after all, and we Stewarts love our breakfasts!

Forgot to mention 2 other reasons to celebrate!

- Judah loves to pray! When Jared says "let's pray" he holds out his hands to be held, and then usually giggles his way through prayer. I wish I felt such delight at the thought and act of prayer!

- He tries to put on his socks! It's so sweet when he holds out his cute little foot and tries to figure out how to get that sock on:)