Sunday, October 30, 2011

Zzzzz...

Tomorrow is the 3 week mark since Judah's surgery - yay! We've almost made it to the no-restraint portion of his recovery:) While I'm thrilled for his sake that he'll no longer have to deal with them, I have to admit that I appreciate those restraints when we go outside and I can set Judah on the ground to explore without fear of him choking on...everything. As far as I can tell the repair is still intact; however, I'm eager to hear what the surgeon has to say on Tuesday.

Judah is still not sleeping or eating well. His progress at mealtimes has been veeeerrrry slooooow, and a cold has complicated an already interrupted sleep routine.

Speaking of a cold... I decided to take him to see his ped. tomorrow. He's had a cough and some wheezing over the last few days that Duo-Neb and Pulmicort are just not kicking. The magic word in Judah's care is "pro-active", so it's probably already a little past time to go. He also has this weird skin thing going on around his button that drives him mad with itching. I just can't seem to get rid of it, so hopefully Dr. A. will be able to offer some help there, too.

The MRI that he had on the 10th showed fluid behind his ear drums. Last week we saw his ENT who concluded that Judah's tubes need to be replaced. They're both blocked and he failed another hearing test. I almost can't believe he's looking at another anesthesia, but... If I'm going to choose to be thankful it's for these reasons:
-For the 1st time ever he's only having 1 procedure done, so this will be out-patient.
-While they're in there, they'll do an ABR which is a hearing test at the brain level. Any time
a kid continues to be non-verbal, hearing is always a question. This will be informative.
-He hasn't had any ear infections.

I got a call from the eye surgeon's office, and we meet with him on Nov. 10. Yet another procedure, but I'm so thankful that he's getting closer and closer to being able to look around like a normal person;)

Judah got his new KidWalk! The rep. from the equipment company came out with our PT last week to get Judah all set up and ready to rock 'n roll...or wheel 'n walk! It was a little odd to think that this piece of equipment wasn't on loan, but actually belongs to him. There's a permanence and a reality check that comes with that. I am so grateful for this piece, though, and the opportunity it affords him. He needs it!
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Lately, I've been battling a lot of discouragement and doubt. It revolves around the sale of our house and is exacerbated by lack of sleep. I'm exhausted. It's hard to be all peppy and positive when I'm so tired. Anyway, on Thursday God showed us that He is still in control, He is still involved in every detail, and He is still "on time". The wait is difficult, but I am so encouraged and humbled by the fact that God revealed Himself to us in such a way last week. Our God is indeed AWESOME!



Monday, October 24, 2011

He's a Climber!

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He's climbing up steps (just one) and onto the loveseat...now we have to teach him how to get back down so this Mama can stop having palpitations every time she finds him UP!

Thursday, October 20, 2011

Palate Recovery #4 - On the Mend

Judah is starting to move forward again. The surgeon said his repair looks good so far, but wanted me to talk to his ped. about the eating issue. I decided to talk to his OT first, who was here yesterday. She said that he's learning how to swallow and even breathe again, because his anatomy has changed. We think that's the likely reason for the eating and sleeping stuff. Yesterday I was able to get some breakfast and lunch in him, and today I distracted him with Sesame Street and got some yogurt down! I'm definitely encouraged, and so thankful for his OT's help! Last night was better, too. He wasn't as restless and only fussed once overnight. He was even able to get some deep sleep...which means Mama got some, too:) I'm trying to imagine what it would be like to have to re-learn how to breathe and swallow. I can't envision it being anything but weird and uncomfortable. No wonder he's having a hard time. We go back in 2 weeks and will be done with the restraints!

Judah also saw his Endocrinologist this week. He ordered a bone age (x-rays of arm and leg to measure growth). Just this morning I got the results, and his bones measure a little past the 18 month mark. That means he's less than a year behind in growth, and he's slowly but surely catching up! He's also officially on the growth chart for weight - go, Judah!

We also have some answers regarding Judah's Ptosis (droopy eyelids) and limited eye movement. The 2nd MRI came back showing no pressure or tumor in the brain, no inappropriate fluid. So, I talked to his ophthalmologist about it, and...long story short, he spent time on the phone with Judah's neurologist and geneticist and came to the conclusion that he falls into the category of a congenital muscular development disorder or syndrome. My words, not his which I can't even remember much less pronounce. By the way, let me just take a moment to point out that this ophthalmologist, which I've mentioned many times before because I LOVE him, actually called the geneticist, i.e. went the extra mile to thoroughly advocate for Judah, and the neurologist and got back to me within a week's time. This guy is AWESOME! Anyway, he has recommended that Judah see a surgeon at the Med. Center (University of Nebraska Medical Center) who will do the outpatient procedure that will open Judah's lids. The gears are currently in motion to make this happen. Any other eye issues we'll continue to work on with Dr. L. I'm so thankful that we're finally moving forward here and have an end in sight...which will mean Judah seeing without holding his own eyes open!

Recent moments of Celebration:

Judah pulled himself t0 stand against the Brothers' door and tried to reach the doorknob to open it!

Judah can pull himself up onto a small loveseat we have in the playroom!

He's learned the sign for "please"!

He loves taking baths now, and can sit up in the tub and play all by himself!

He's started to "bear walk" occasionally! (It's crawling on hands and feet, rather than knees.)

Monday, October 17, 2011

Palate Recovery #3

Judah was doing so well when we brought him home; eating well, sleeping pretty well, acting like himself for the most part. In the last few days he's gone backwards, and I can't figure out what happened. He's fussy whenever he wakes up, he cries sometimes - just cries - which is just not at all like him. He's not sleeping well, and he's not eating at all. We have nutrition that we can give him through his button so he doesn't miss out on calories/nutrients or lose any weight, but him not taking anything is disturbing. He cries in his seat when we try to feed him, and it takes awhile to comfort him. I'm kind of at a loss. And I'm quickly wearing out, getting exhausted. I'd appreciate prayer about all of this. We see the plastic surgeon tomorrow, so at least then I'll know for sure if his repair is healing well and looking like it's supposed to. When I look at the roof of his mouth I see an angry, ugly mess. I'm eager to get to the dr. for some comforting news. I'm also eager to get my boy back; but I remember with the last repair that it just took a long time. We'll get there. In the mean time...pray for rest for Judah, complete healing, and comfort.

Thanks everyone! I haven't forgotten about posting pictures. But laundry takes precedence...I guess.

Thursday, October 13, 2011

Palate Recovery #2

I was so worried about this recovery, almost making myself sick over it. God has been so, so gracious to Judah in this (like He would be anything else, really); and I am very pleasantly surprised and relieved! There is really no comparing these 1st days since surgery with the last time. Judah slept most of Monday, and we made sure we stayed on top of his pain management so that he would have very little chance of getting uncomfortable. He still had moments of discomfort and restlessness, some fussiness, but overall he did wonderfully! Jared and I spent the afternoon together. I sat and snuggled Judah for 5 hours (didn't know it had even been that long until Jared pointed it out), Jared sat with me, and we laughed at The Office. We had dinner with my folks and the kids that night, and then Mom stayed behind for a bit so we could talk when everyone else went home. It ended up to be a much better day than I had anticipated. Judah had a good night, only needing me to lie down with him for a short time twice.

The next morning Jared surprised me by showing up with flowers and coffee at 7. I was still in "bed", so he cuddled with me for awhile. Best hospital morning ever. Judah popped up in bed that morning like he hadn't had major surgery the day before. I was encouraged; but the rest of the day pretty much went downhill from there. It wasn't awful, but Judah was really crabby (no wonder) and I spent the rest of the day just trying to meet his needs. It was busy. Relief came in the form of Lydia, Grandma, & Grandpa with lunch. It was so good to spend time with them and get a little break while Grandma played "This Little Piggy" with Judah and gave him some lovin's. I asked Jared to come up for the afternoon. I don't do that. I know he'll come home if I need him and ask him to; and that's enough for me. Just to know that he will do that for me on a really bad day. This time, though, I just asked him to come. Exhaustion was setting in, and I was starting to run on empty. We spent the afternoon watching "Big Bang Theory" after Judah finally crashed. I'm not sure why the 2nd day was harder for him then the 1st. We kept the pain meds coming. I know the gauze pack in his mouth was a major irritant. I hate that thing. The 2nd night was a good one for him, too. Wednesday morning was good, simply because I knew the gauze pack was coming out and we were going home! Judah was still irritable all morning, but he was happy to see G'ma & G'pa with Lydia again. By this time, I felt bad for him. He hadn't eaten anything since Sunday, liquids only, so I knew he was hungry and just mad at everything. Poor kid. Still, the recovery up to that point had been better for him than the last one with this surgery. Around 2:00 the gauze pack came out, and Judah slowly started acting more like himself. We were on the road, ready to pick the Boys up from school by 2:50.

His recovery here at home is not at all what I prepared myself for! He's almost completely like himself! The restraints don't seem to bother him much, and they sure don't slow him down. The 2 biggest challenges we face now are: eating & hands-away-from-mouth.

Judah wants to feed himself, but he can't. We have to feed him, and he gets very frustrated with that. Meal times haven't been pleasant. He just needs to get over it for now, and then I think he'll be fine. His diet has had to change, too, and that adds to it. The other challenge is making sure his hands don't fly into his mouth in the few minutes or seconds we have his restraints off every couple hours. My biggest fear is that he will damage his repair. That's my prayer request for right now. That God would protect that repair - supernaturally if necessary - and allow total healing in the next 6 weeks or so. That's the time frame we have before we know for sure that this thing isn't going to re-open on its own.

Gotta go get the Boys. I'll post a few pics later.


Monday, October 10, 2011

Wrap-Up

Judah is in Recovery slowly waking up. He's almost done with this part. The next part will be the hardest. Everything went well, and as far as we know, he's doing OK in Recovery. Please pray in these next 48 hours. They will be the hardest. He'll be in pain, he'll have a gauze pack stitched to the roof of his mouth to protect the new repair, and he'll be all-around uncomfortable. Pray that we'll be able to stay on top of his pain and that he'll be able to get good rest in spite of the uncomfortable gauze pack. (That will effect what position he can sleep in, because it can effect ease of breathing a little bit.) Pray that Jared and I will be able to comfort him. And please pray that I will keep my eyes on Him and the big picture of His plan for Judah. This is just one small part. Judah can only move forward from here.



Surgery #2

The hernia repair went well, although we haven't seen that surgeon yet. Judah is currently down in MRI, and will be wrapping up within the next 30-45 minutes or so. He's still doing well. My sweet boy. I can't wait to snuggle him and smell his little boy smell. Weird the things that stand out to me when I'm missing him in these situations.

So thankful that Jared is sitting beside me, here for the long haul today; and that my big 3 are in good hands. Can't wait to be together for dinner tonight!

Surgery #1

We talked to the plastic surgeon about a half hour ago, and he told us everything went well with the revision. He's happy. The next 3 weeks will be important as we keep Judah in elbow restraints to prevent little fingers from opening the new repair; and the next 6 weeks he'll be on a soft diet. I'm a little bit nervous after talking to the doctor about prognosis. There is no guarantee that this revision will be the last. When dealing with scar tissue, the general rule is that the more there is the more likely the need for more repair will arise. That's a lot of "more". I originally thought that this would be it for him. In reality, scar tissue is unpredictable and it is possible that another revision is in his future. It will be a challenge for me to surrender my anxiety and just stay in the moments of each day, but that's my prayer for my own heart.

Just got another update, and the general surgeon is already on the 2nd hernia. He'll be wrapping up soon, and then Judah will be on his way down to MRI.

As I think about what the rest of the day will look like for Judah, I'm trying to come to the Lord with open hands, surrendering Judah and my Mama grip on him. Surrendering my fear and anxiety. Surrendering my sadness. Judah is His and He is good.

Thanks for your continued prayer. Thanks for being God's arms around us, holding us up. And thanks to those of you who will extend your arms, literally, to hold us up in the days to come.

Sunday, October 9, 2011

Prayer Reminder

Jared and I spent 55 wonderful, restful, fun, relaxing, kid-free hours together this weekend while Grandma & Grandpa held down the fort. This was a 1st for us since Judah's birth, and definitely a 1st for Grandma who was primarily responsible for Judah's care while we were gone! We came home to 4 happy, energetic kiddos and 2 tired grandparents; but a good time was had by all, and Grandma stayed on top of everything. What a relief it was for Jared and I to have a full weekend free of meds, pump, diapers, and "therapy". Thank you, thank you, thank you, Grandma & Gramps!!! Now we shift gears and try to prepare ourselves for tomorrow and the next several days and weeks.

We have finally made it to Judah's palate/bilateral inguinal hernia repair and MRI. Barring the return of a high fever between now and tomorrow morning, we will be on our way to the hospital at 5:15. His surgery is at 7. Please, please, please pray!!!

1. Judah's pain management
2. Lots of sleep, in spite of pain and discomfort
3. Smooth healing & recovery over the next 3 weeks in elbow restraints
4. My heart

Thanks so much for praying for Judah and standing with us. We are better together!!!