Make That Five

Five surgeries under his belt, that is.

In surgeries like the one Joshua had last week, the chances are less than 1% that there will be a problem with major bleeding that doesn't stop from the surgical site.

We were awakened at 3:30am on Sunday morning to find that the odds were not in our favor.

Since the bleeding was off and on at first, the doctor told us to wait and see for a while. By about 9:30 am it was clearly time to go the emergency room, where we sat most of the day with Joshua, as an alarming amount of blood poured from his nose and mouth, soaking towel after towel.

So many people were praying for us that day, and in the middle of a potentially serious and frightening situation, I truly discovered what it was like to experience peace that defies understanding (Philippians 4:7)

Not that we weren't concerned, uncertain, and uncomfortable, but there was as definite and deep a peace as I have ever experienced in my life.

My little boy, uncharacteristically weak and lethargic, laid his head on my lap and I stroked his head with one hand and pulled nasty blood clots out of his mouth with the other. Phil read aloud from Psalm 91:

He will command His angels to take good care of you. (NIrV)

I couldn't really describe to you the way I could feel, almost tangibly, that there really were ministering spirits in the room with us.

But maybe I could describe some of the specific ways I experienced the kindness of my Heavenly Father.

It was in the friends we were about to call that morning for help with our kids who called us first to say they were praying for us and felt they should come and get Grace and Caleb.

It was in all of the hospital staff who showed extra kindness and attention to us.

It was in the parking attendant who came out of his booth and manually lifted the arm for my husband who forgot to validate his ticket.

It was when the surgeon, who had just told us that despite his best efforts, it would probably be hours and hours before we could get a spot in surgery, returned with a look of surprise. "I can't believe this but they're going to get us in in 30 minutes. You really don't know how amazing that is."

I do know how amazing my God is.

Most of the bleeding actually stopped on its own by the time he got into surgery and the actual surgical site that needed to hold was in perfect condition. It looks like he only popped one stitch - the one that was considered "extra" from the beginning.

Joshua has recovered well these last few days and his speech even sounds better than we expected it to at this point.

Everything doesn't always turn up roses and sunshine for us the way I think it should.

When we left the hospital last week, we were certain that we had at least 3 or 4 years before we'd be sending our son back into the operating room, not 3 or 4 days.

And there were a lot of other ways I would have liked to spend my Sunday besides watching asinine Sponge Bob cartoons while blood pooled under my child.

Those who trust in Jesus aren't promised a life without problems. Quite the opposite, the Bible says. But we have the assurance that He walks with us through every one of them and not one detail gets by Him.

He is before us, behind us, and His hand of blessing is upon us (Psalm 139:5).

We are so grateful to be His kids. So undeserving. But so grateful.

A Fourth Surgery Under His Belt

We got up bright and early (actually it's not bright at 5:15am) and arrived at the hospital to find that there was a bit of a scheduling mix-up. Joshua wasn't taken back into surgery until 9:30. So we sat in pre-op for a few hours trying not to remember that we could still be under the covers at home.



Joshua, who is now a little too old to be fooled about what's going on, had ridden to the hospital wide-eyed and mostly silent. He softly sang along with some of his favorite music and then burst into tears as soon as we turned into the hospital parking lot.

In the pre-op room, though, he was introduced to Nintendo, and all his troubles melted away.


By the time the nurse came to wheel him back to the operating room, he was either completely distracted by the video game or resigned to the fact that there's no point in fighting things.


We are told that the surgery was successful, and after months of speech therapy there should be some major improvements.

He made it through the next few days with some very sad faces and big, quiet tears (Watching him cry so somberly makes me realize that I actually miss the screaming...)

But he started to perk up about the time his guests arrived...

And in the past few days has recovered pretty well and felt strong enough for a hike this morning.

Back to the OR

Joshua headed back to the operating room this week to have some more work done on his nose and palate.



My dad showed up the night before bearing homemade lasagne and ready for a Rummikub marathon with the big kids.

We were almost ready. I had a little talk with Joshua about everything, wanting to prepare him a little bit, without giving too much information. I solemnly informed him that, due to doctor's orders, he would not be having his morning banana the next day.

Joshua looks forward to a banana every morning almost as much as I look forward to coffee, so this was news was not received very well. The next morning, though, he decided it was rather exciting to be plucked out of bed and put straight into the car to go somewhere with Mommy and Daddy. Maybe we're going camping again, he may have decided. As we drove down the freeway, he looked out the window with the anticipation of a new adventure, giggling occasionally.

Cruel, I know.

At the hospital he looked around with vague suspicion, which slowly grew as more and more people in scrubs came to talk with us.

Most of our questions were answered with, "The surgeon will discuss that with you when he comes."

We had our doubts about that. Joshua's surgeon is widely recognized in our area for his excellent work. However, his interpersonal communication skills, in my opinion, leave much to be desired.

I did get my hopes up, though. Since, after all, he was rearranging the contours of my son's face, I thought he might take a little time to discuss that with us. We had even acquired and brought along some pictures of noses from Joshua's birth city.

But true to form, he shook our hands, briefly glanced at the photo, mumbled a few cryptic and unintelligible comments, and disappeared through the surgery doors again just as I was opening my mouth to say, "I have a few quest... "

"What about...wait...hello?...come back!"

I turned to my husband, who looked as bewildered as I felt.

"Did you catch any of that?" I asked him.

"Something about, 'He's going to look a lot different.'" He looked at me. "When he comes out to talk to us after wards, I'll hold him down and you ask the questions."

As for Joshua, we learned that he was not going to get any "happy juice" this time to ease his transition away from us into surgery. The nurse, who clearly understood preschoolers, had a better plan.

"Come with me, Joshua," she said with excitement as she held out her hand. "You get to come with me and push a button to open these big doors!"

He fell for it, and taking her hand, he eagerly went to push the button. We had one last glimpse of them walking down the hall to surgery, she gushing over what a good job he did pushing the button, and he marching off with a swagger of self-importance and accomplishment.

Cruel trickery, he would soon discover.

Everything went as planned, though, and less than four hours later we were home, trying to catch a glimpse of his new nose under the bruises and blood and stitches.

Fortunately, there are no arm restraints this time and his diet restrictions are not as strict as they were after his last surgery. Our biggest challenge now is to explain to this rambunctious little wild child who refuses pain medication that one is supposed to take it easy after surgery, not jump off furniture and race through the house and throw trains in the air.

We just have to get the stitches to hold a few more days...

It's All Good!

For the month of August, our family has been keeping a record of answered prayers, big and small, to help us keep our eyes open to what God is doing all around us. The list is getting pretty long, and after our follow-up visit with Josh's surgeon today, we have one more item to add to the list: The hole in his palate closed up on it's own and it is completely healed!

In the next six months or so, Joshua has some major dental work and a nose surgery to look forward to, but thankfully no more palate repairs! The doctor said his palate is very strong now and there is nothing he can do to hurt it. I think we may have to break out the potato chips to celebrate : )

Free At Last!

Joshua's arm restraints were peeled off for good on Thursday amid much celebration. Most of his diet restrictions were lifted as well and he could not be happier.



The only bad news is that there is a hole in his palate. The doctor gave us some encouragement that they sometimes close on their own. If not, we will have to go through everything again in six months. He said we should have a pretty good idea whether or not it will close in two weeks. Needless to say, we are praying that it will completely close on it's own to spare him the trauma repeating this whole thing.

When the doctor told us he could eat again, I wanted to clarify.

"Anything?" I asked.

"Anything." he responded.

I wanted to be really sure and tried to think of something with sharp edges. "Even potato chips?" I asked.

This doctor is very quiet, probably one of the least expressive people I have ever met. At the suggestion of potato chips however, his eyebrows shot up and his face registered mild horror.

"He eats potato chips?" he asked incredulously.

Again, there goes my mother-of-the-year award.

Being Thankful

Always be thankful, for this is God's will for you who belong to Christ Jesus.
- 1 Thessalonians 5:18

Yesterday, as the morning light dawned, I met the day not with a smile, but with a groan. I had been up since 3:30 am with a screaming child and had just returned to my bed to find another child sprawled out in my spot. As I went off in search of another place to sleep, I couldn't help but think of what a hard week it had been.

There were quite a few things that I felt more than justified in complaining about. The only problem was, I couldn't, because it was Saturday. I keep a journal, and for the past couple of years, my practice has been that every Saturday I make a list in my journal of all of the things I can be thankful to God for from the past week. Some Saturdays (like this one) it is harder than others, but it is always very rewarding.

So I won't bore you with the whole thing, but I once I started, I had quite a few things to put on my list including:

• Joshua's fever finally broke. After two weeks, three different medicines, trips all over town to multiple doctors, and most importantly, lots of prayer, he is now fever-free!
• He is actually gaining weight. Apparently his restricted diet and refusal to eat didn't hurt him too much. He gained a whole pound in the last two weeks, and is now tipping the scales to the point where he is almost in the 5th percentile for weight!

There were also some rather unlikely things make the list this week. From the Don't Know Whatcha Got 'Till It's Gone category:

1. Getting to do laundry! No, I haven't started using drugs - I'm serious. To be more specific, I should say: getting to do laundry in my own house. Laundry has always been my least favorite household chore, the subject of much of my whining whenever I'm feeling the urge to whine. There's so much of it, it never ends, I hate it, blah, blah, blah...

With surgery and bloody drainage and colorful medicine being spit back at us, a washing machine out of commission couldn't have come at a worse time. I have had to drag my family's unmentionables to friend's houses, the laundromat, the Ronald McDonald House at the hospital, and even watched my kids scrubbing them in their play pool for fun. And now we have a working washing machine again and I am thrilled! I will never again groan over having to laundry at my house again! (Okay, that's just not true, but it sounded good.)

2. Cooking for my family. Because Joshua is on a restricted diet, we haven't wanted to eat forbidden foods in front of him. That means I haven't cooked in over two weeks. Truthfully, I kind of miss it.

3. Eating together as a family. We haven't all been able to do this in two weeks and it makes a big difference. Truthfully, mealtime with all my kids could fall under the category of things I used to complain about, because it was constant up and down for me, getting requested items from the fridge, cutting food up, refilling drinks, cleaning up spilled drinks, incessant chatter... and so often I thought how nice it would be to have a quiet meal by myself. But after having to hide out in other rooms to eat and sending my kids into other rooms to eat alone, I've learned just what a privilege it is to be able to eat together with my family.

4. Elbows. Yes, elbows - where would you be without them? My son has been without the use of his elbows for two weeks now and though he has adjusted and made the best of it, I've decided: life is just nicer with elbows.

What I Can Still Do With Arm Restraints

I can color

and paint.I can even dig through Mommy's wallet.

And I can look cool.

If only somebody would put my pants on, I'd be so much more cool.

Setbacks

There will be no arm-restraint burning parties around here today. Today was the day we had circled in red on our calendar, the long-awaited tenth post-operative day that we were told were be our toddler's last day in arm restraints.

But instead we received the disheartening news that he will have to continue wearing them until at least next week. He was also diagnosed with a raging double-ear infection that has thus-far proven resistant to two different antibiotics. Needless to say, our little guy is completely miserable and unable to sleep at night. We are all a little worn out.

Yesterday in particular was one of those of those days that seemed to stretch into eternity. I had been up a large part of the night with an inconsolable toddler who had also decided to start the day around 5am, and was so uncomfortable that he would only nap in my arms. My older kids, having been left to entertain themselves and allowed to watch too much TV lately, are not surprisingly climbing the walls and fighting with each other a lot.

In addition, we have been without a washing machine for over two weeks now and yesterday we were confined to the house all day to await the delivery of a replacement (finally!). This would have been fine except that we discovered during an early-morning diaper change that we were completely out of diapers.

After some frantic scrounging around the house, we discovered some swim diapers - adequate, but not quite so good on the leak-protection factor. Possibly even more tragic was the discovery that we were also out of coffee.

There was a moment in the day when red juice was spilled all over the floor, a sibling fight had resulted in minor bloodshed, and my miserable toddler wailed in my ear as his siblings continued to shout at each other. Head pounding and completely exhausted, I cast a hopeful glance at the clock. Surely my husband would be home soon. But, to my utter dismay, it was only 9:52 am. How could that possibly be??

And so we find ourselves in the school of endurance and perseverance. Perseverance, I'm told, must "finish its work, so that you may be mature and complete, not lacking anything." (James 1:4) Too bad there isn't some other way to learn it. Couldn't I read a book on perserverance or something?

My husband did eventually make it home, bringing with him even more disheartening news: our washing machine would not be coming today after all.

Some encouragement did come, though. Undaunted, my daughter announced, "Don't worry, Mommy, I will make a washing machine and wash the clothes for you!"

A few minutes later she marched out the back door with a her new invention, an armful of laundry, and some soap and set to work.

Well, at least it keeps her busy, I reasoned.

Apparently, laundry is fun when you're six. One of Grace's friends came knocking on the door to play. "She's out back doing laundry," Phil informed her.

"Oooh, fun," was the response as she skipped to the backyard. And so our family's laundry became the neighborhood excitement for the afternoon. Soon our swing set was decorated with dripping socks and Batman underwear and Grace's friend went home, probably giving her parents an earful about the crazy homeschool family that makes their kids do laundry by hand outside.

On another note, one of Joshua's little buddies went in for his palate-repair surgery today. Please say a prayer for Will and his family as they go through recovery.

All For One and One For All

Grace and Caleb went to stay with family for Joshua's surgery and I thought the recovery period might go easier if we waited a while before going to get them. When they did come back, I realized I had seriously underestimated their capacity for compassion and ability to pull together for their brother.

When they walked in the door, Josh's entire face lit up and he began jumping up and down in joy. He immediately began chasing Caleb around the house, pausing every now and then to admire card after card that Grace had made him while she was away.

Finding our extra arm restraints, they took turns wearing them around the house while playing with Joshua. His willingness to eat also improved dramatically when he watched his heroes eagerly downing the smoothies and yogurt drinks he had been refusing. They even let us feed them baby food out of a syringe to try and persuade their brother to do it.


One bedtime, we were having trouble finding Josh's blankie. Blankies are very serious business around here. Watching her little brother's distress, Grace, the most serious blankie-lover I have ever known, offered to let him sleep with hers. Frankly, I would not have been more impressed had she offered him a kidney.

Fortunately the missing blankie was found and everyone settled in for the night with their own blankies and the reassurance that we're all in this together.

We Love Carnation Instant

Joshua finally broke his hunger strike late yesterday.

In the end, it wasn't the 457 things we offered him that got his attention. It was the one thing that wasn't offered but that Mommy was enjoying herself, because as every toddler knows, that is the really good stuff. If there was any doubt that Joshua is my real son, it was removed when we discovered our mutual love for Carnation Instant. I just hope there is enough nutrition in there to keep him going because we haven't had success with anything else yet.

A little something in the tummy does a lot for a person, and we began to see smiles again and even a little dancing around the living room in the evening.

He would never admit it, but I think he is actually developing a little fondness for his arm restraints. They are very fun with balloons on them and he enjoys waving them around as part of his dance routine. Initially, he was frustrated that they prevent him from being able to use sign language, but he has since found that pointing and stamping his foot produces similar results and is actually much more satisfying.

Personally, I think the arm restraints are very cute on him. I wanted to post a picture, but there is still a fair amount of bleeding from his nose and mouth and the truth is he doesn't look so good. One of the highlights of each day for him has been an early morning stroller ride. Yesterday when I took him for a walk, I noticed we kept getting strange looks from passing joggers. I finally pulled back the canopy to check on Joshua and I discovered quite a bit of blood on his face. I hurried for home before anyone could report a loony woman calmly pushing a stroller with a child covered in blood and what appeared to be casts on both arms.

I guess I won't be receiving any Mother-of-the-Year nominations from my neighbors.

Giving up Control

Our surgeon had reassured me that although I wouldn't be feeding my one-year-old anything but liquid for ten days, "he'll do just fine with it." Maybe the fact that most of the toddlers he's around are under general anesthesia explains why an otherwise intelligent man could hold to such a delusion.

As for Joshua, he fiercely maintains that he would rather starve than be fed pureed food by someone else. The biggest issue for him seems to be one of giving up control and allowing someone else to feed him or even hold his cup while he's drinking. I am again struck by the difference in my sons. If Caleb had to lay in front of the TV and have someone pour food into his mouth, he would probably think he was in heaven, but Joshua has resisted this with everything he's got.

I have offered him many of his favorite things, including a popsicle, which he was pretty excited about until he found out that it would be me, not him, holding it. He let me know in no uncertain terms that even such a treat as that would not persuade him to give up control. We have managed to wrestle a few liquids in him, and I do mean wrestle. Physically, he is weakening, but his resolve has yet to budge.

I have to wonder if this is just a natural tendency toward stubbornness and independence magnified by toddler-hood, or the result of some early experience in the orphanage.

His will of iron is actually kind of impressive. I'm sure it will serve him well someday when he is a CEO, or an Olympic athlete, or perhaps even the dictator of a small country, but if he (and we) are going to make it through the next ten days, he's going to have to bend a little and decide to trust us.

I once heard it said that children, for all their immaturity and quirkiness, have a way of sometimes acting as mirrors for us. As I watch my son beating all of his limbs on the floor in frustration, choosing hunger and misery over surrender, I feel like God gently whispers to me, This is what you look like sometimes.

Surgery

Thankfully, our first surgery with Joshua is behind us. Now, if we can just get through the recovery period...

We arrived at the hospital very early yesterday morning with Joshua totally wound up and ready to go. We changed him into a miniature hospital gown with tigers on it, to his great delight, and he ran around showing off his new outfit to anyone who cared.

He looked, in my opinion, way too small to be in a hospital gown. My emotions went back and forth from anxiety about sending my baby into surgery, to a sense of awe at what modern medicine was about to accomplish in a very routine sort of way. The next time I saw him, his mouth would be completely whole and repaired and he would have the chance to learn to speak normally.

Our biggest worry at that moment was how he would respond to being wheeled away from us and into a room with strangers in masks. We expected that our last glimpse of him going into surgery would be of him crying and reaching out for us.

The nurses assured us he would be fine, but after watching him wreak havoc all over pre-op for an hour, they went off in search of the anesthesiologist and came back with something "to get him plastered."

Pretty soon he was stumbling around drunkenly, singing and giggling with an occasional hiccup and not a care in the world. "I get a lot of requests for that stuff," the anesthesiologist admitted.

And so as it turns out, he was wheeled away from us waving bye-bye and still giggling through the haze of his inebriated bliss.

But after surgery was a very different story. We were with him when he woke up, finding himself swollen and bloodied with the added insult of arm restraints. He was extremely angry and quickly found the strength to let us know about it. It took no less than three adults to administer medicine to him as he thrashed around.

Yesterday was a very long day trying to manage his pain, confusion, and dealing with the sheer force of his anger, and yet a walk through the hall of the pediatric unit quickly put things in perspective for me. How brief a moment we would walk through the difficulty that is a daily reality for many families.

Today is much better. Joshua has made a tentative peace with his arm restraints, but finding himself on a liquid diet today that someone else would have to feed him has been a bitter pill to swallow for our little control-freak. This too shall pass, or so I'm told.

God has been very good to us. We are thankful for modern medicine, good nursing care, and our access to them. We are thankful for family willing to watch our older kids (again!), and we are thankful for the many friends who have supported us with prayer and other practical things. AND we are very thankful that the arm restraints are coming off in nine days!

Surgery Tomorrow

Please keep Josh in your prayers tomorrow as he will be undergoing surgery for his palate repair and getting tubes put in his ears.