Groundhog Day

Today Bill woke up in his hospital bed again and looked around his hospital room--for the 46th time. And just like Bill Murray, he was wondering when he was going to get to wake up in his own bed, in his own house. Well, the answer is "soon." And the chances of his departing from the hospital are 100%--only later this week.

After three gastrointestinal surgeries, his food is finally going in the right direction--down instead of up--and it looks as though this one finally worked. We're all quite relieved, including his surgeon. We're that family where if something can go wrong, it will. And in Bill's case, there wasn't much that went right this past month and a half, except he kept breathing, which was a plus. But now, this episode is just about over, and he'll be waking up in his own bed soon.

So I asked him tonight, over his chicken noodle soup, chocolate shake and apple juice--of which he had approximately 10 bites total--what God had been saying to him today. He said, "Keep my eyes on Him and don't complain." Yeah, me too.

Thank you for praying us through these long weeks. We are so grateful for you all.

Jean

"Let us fix our eyes on Jesus, the Author and Perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God." Hebrews 12:2

Three years later...

Today marked the 3rd anniversary of Annie's Addisonian crisis that resulted in a severe brain injury that caused her to lose the ability to walk, talk, eat, look up at the stars at night, and play dress up with her Cinderella doll. Thirty six months filled with hours of grieving the loss of the dear little Annie who used to be, of asking God why?, and of buckets and buckets of tears.

However, I am relieved to say that three years later, we have bonded with our new and bigger Annie, who smiles, laughs, snuggles and gives our family much joy. Joy being the byproduct of the confidence that our work in caring for her causes us to daily repent of our selfishness...joy in each new skill, new accomplishment...joy in knowing that God will bring about His purposes in her, even though I don't understand what all those purposes may be...joy that someday Annie will be given a new body and new mind.

It's been three years of a steep learning curve of simultaneously working hard to uncover her potential while accepting her limits and praying for healing. Kind of a mind bender that will someday all make sense.

Jean

We ourselves groan within ourselves, eagerly waiting for the adoption, the redemption of our body. For we were saved in this hope, but hope that is seen is not hope; for why does one still hope for what he sees? But if we hope for what we do not see, we eagerly wait for it with perseverance. Romans 8:23-25

Addison's Disease on The Doctors, Monday January 18th

The National Adrenal Diseases Foundation ran a campaign to get Addison's Disease as a topic of the CBS TV show, The Doctors. (I just learned today that it is on ABC, channel 7 @ 11 AM in the Seattle area.) It is supposed to air this coming Monday, January 18th, during the last 5 minutes. Tune in to learn about Addison's, and how to recognize it.

It bears repeating--if Annie had been diagnosed in time, she would not have suffered a brain injury. The signs and symptoms of Addison's include increasing lethargy, dehydration, depression, muscle aches, craving of salty food, nausea, vomiting, and--most notably in Annie's case--a darkening of the skin.

If recognized and diagnosed, Addison's is easily treatable with daily doses of hydrocortisone. What's not easily treatable is the fallout from a brain injury.

Jean

New Year

After 3 weeks of wandering around another hospital in the middle of December, we've escaped again to tell the story. Only this time, Annie wasn't the main character--Bill was. And still is. A character.

The cafeteria food notwithstanding, we had a grand time. Lots of hair-raising, hand-wringing, nail-biting moments; lots of prayers answered. Spending the entire Christmas break in the hospital was memorable. And I'm not just saying that.

And you were wondering, Why is this family so plagued by health problems? Funny thing, I was asking Bill the same question just yesterday. After thinking it over for a moment, his answer was, "I don't know, what do you think?" But, really. Every family has a certain defining quality, ours just happens to be catastrophic disease. So what? It could be worse. Like if we were in a reality show with 8 kids or something like that.

So, I promised Bill I wouldn't share too many of the entrails, I mean, details about his stay in the hospital on the blog. Except that most of it involved the inside of his stomach. And with the parts the surgeon took out, in about 6 months he should be looking more like Fabio than he ever thought possible. I think they call it accidental gastric bypass surgery. After the crisis was over, it occurred to me that he had just used up another one of his get-out-of-death free cards. I think he has a stack of those lying around here somewhere, because he's used about 6 of them in the last 28 years. I wish I were kidding.

But all that happened last year. This year, we're going to look forward to a New Year blessed with good health, good friends & family, and to a good God Who answers prayer!

Jean

Our God is the God of salvation;
And to GOD the Lord belong escapes from death. Psalm 68:20

That's what Christmas is all about...

Well, here we are with only 17 more shopping days until the big man comes down the chimney with a bound. I feel pretty good about my time line, and the things left to do on my list--quite unusual for me, I have to admit. But while you sit and read this, and ponder how you're going to get your own list done, why don't we revisit the whole reason we celebrate Christmas in the first place? It's good for me, and good for all of us to step back and think about the most important thing we need to do this holiday season, and that's to consider Jesus. Who is He and why was He born? Was He a prophet, a good teacher, or as we Christians believe, is He really God?

December 25th is the holiday that commemorates the birth of Jesus. The Bible says that Jesus was born of a virgin, in the town of Bethlehem. His birth was foretold by the prophet Isaiah 700 years before His birth: Behold, the virgin shall conceive and bear a son, and shall call his name Immanuel. Isaiah 7:14

Jesus claimed to be the Son of God. The religious leaders of his day didn't like that He said He was God, so they conspired with the Roman government to crucify Him. What they didn't know, was that God's plan from the beginning was to send His Son, Jesus, to earth for the specific purpose of dying on the cross, in our place, for our sin. (Rev. 13:8)

Sin isn't a politically correct subject. But the truth is, we're all sinners. Our first parents, Adam & Eve, sinned by disobeying God and following Satan--they decided to be their own god and do what they wanted, instead of what God commanded. And haven't we done the same? Some sins are obvious, like murder and stealing. Other sins are subtle, like pride, arrogance and selfishness. But whether we kill someone or just hate someone, we are all guilty before holy God. And this sin separates us from God. The Bible says that the wages of our sin is death. (Romans 6:23) Yes, we are all deserving of hell--which is a real place with real fire that hurts real bad. So either we need to die for our sin, (and go to hell) or someone needs to die for us (thereby saving us from hell). Jesus did just that. He "bore our sins in His own body on the tree, that we, having died to sins, might live for righteousness—by whose stripes you were healed." 1 Peter 2:24

Now, some people try to sidestep the whole Jesus thing, and try be good enough for God to accept them, but God says in Isaiah that all our good deeds are like filthy rags to Him. (Isaiah 64:6) In fact, Jesus said Himself, I am the Way, the Truth, and the Life; no one comes to the Father except through Me." John 14:6

The only way we can have a relationship with God is through faith in His Son, Jesus. Think about it--if all we had to do was try to "be good," then why would Jesus come to earth, allow His creation to kill Him and then rise from the dead? No, we are all sinners, in need of a Savior, and Christmas is the day we remember the coming of this Savior--born of a virgin, born for the specific purpose to show us God's love for us by dying in our place, for our sin.

Christmas reminds us that we need Him--we can't save ourselves. No amount of good works is enough to make us good enough. Jesus paid it all. He has made the way to God. For by grace you have been saved through faith, and that not of yourselves; it is the gift of God, not of works, lest anyone should boast. Ephesians 2:8-9 But as with all gifts, this Gift needs to be received. It is not enough to mentally agree that there is a God and there is a Savior named Jesus. Putting your faith in Him means believing that He died in your place, and then allowing Him to be the Leader of your life.

What does this mean for you? Well, let me ask you: Do you know how wonderful it feels to be free from the guilt of sin? To know that you have a heavenly Father who loves you and will always be with you? To know that you don't have to figure life out by yourself? To have Someone who hears your prayers and can actually do something about your problems? To know Someone who will be there on the other side of this life? To belong to a huge family of other believers in Jesus? That why they call this the Gospel, or Good News!

My hope and prayer is that you would receive God's Gift of salvation, and that you would know in a fresh way what Christmas is all about!

For unto you is born this day, in the city of David, a Savior, which is Christ the Lord. Luke 2:11

Thankful

Thanksgiving is a good time to look back over the past year and write down all the ways God has blessed us. I've whittled my list down to an incomplete top ten, and here they are:

1. Only one week spent in the hospital this year. Oh, and the overnight stay to get Annie's VNS placed. Woo-hoo.
2. Annie's new Kidwalk. She loves to walk through the hall at school and touch the lockers. I'm not sure why they fascinate her--maybe she's trying to figure out what's inside. Or how to get inside.
3. Bill. Okay, he's probably #1 on this list, but I'm always thankful for his unselfish love and support. He is a gift from God-- and, yeah, occasional comedic relief.
4. Annie's nurse, Moira. She is simply the best.
5. Teacher Amanda. She expects a lot from her students, and patiently coaxes it out of them--all with a fun and playful attitude. She is Teacher of the Year in my book. Annie thinks she's pretty cool, too.
6. All of Annie's therapists--Michelle, Kim, Sandy, Sarah, Amy, Kathy, Claudia--so many hours working on walking, talking, eating, riding...I am grateful for each of these professionals who have contributed so much to Annie's progress this year.
6. My six kids. Their love, affection and care of Annie blesses my heart; their support helps me immensely. Their "other" lives provide a needed diversion from the medical minutia that I obsess about.
7. My new granddaughter. My heart just about turns inside out every time I spend time with this little bundle of pink. How does a ten and a half pound baby draw you so close into her orbit with just a smile and a coo? She is perfectly, entirely, and beautifully wonderful. And I am so proud of her Mommy & Daddy.
8. Friends and family who pray for Annie. You need to know that the moment your prayers leave your lips, God is at work at our house. Your prayers are the glue that holds us together.
9. Annie's progress this year. Her brain continues to knit together, making new connections each day. Let me share a little example. Annie has a cold. Thankfully, she hasn't had many colds in the last 2 1/2 years, so she hasn't had much practice coordinating sneezes, coughs, and sniffles. And you know, if you've had a cold recently, how difficult it can be to produce all this junk and not know what to do with it. Well, this morning, Annie was on the verge of upchucking it all, because that's what she knows how to do, and has had plenty of practice doing. And as she was moving in that direction, I interrupted the snowballing process and said, "Annie, swallow." So she looked at me, pursed her lips, and swallowed. Now--you may think this is not a big deal. It's a big deal. For her to understand what I said, and then follow instructions, and coordinate all her mouth and swallow movements---it's a real big deal. And just a little example of the cognitive progress she's made this year. Now, to teach her how to blow her nose into a Kleenex instead of onto her sleeve...
Okay, one more story. I have a pile of about twenty board books on the hearth beside the recliner. Annie and I sit on the recliner each day and read about ten of them. I pick up two, and ask her, "Do you want to read Hop on Pop or Are You My Mother?" Then she chooses by touching one of the books. We repeat this process until all of the books are read. Occasionally, I'll introduce a new one to her favorites, and after reading it a few times, it becomes another one of her favorites. She loves to be read to. I have a hunch that some day this will morph into being able to read herself. Or read outloud. Won't that be the coolest thing?
10. Jesus--He gives me hope that these difficulties aren't without purpose or meaning--or an end. To know that one day Annie will run and jump and laugh and talk--this gives me so much hope. I know she will, whether here or in heaven. But I hope it's here, don't you?

Jean


Enter into His gates with thanksgiving, and into His courts with praise. Be thankful to Him, and bless His name. Psalm 100:4

Trends

Thursday was great; Friday the storm came in. Annie began Friday by dumping her breakfast on the living room floor. I had a brief thought that maybe she wasn't feeling well, but since Thursday was so great, I quickly dismissed it, and figured that maybe moving the G-tube rate up 1 point, from 105 an hour to 106 an hour was too big of a change--that's why she threw up, I thought.

So I packed her up for school, and off we went. She did look a bit droopy in the van, which I mentioned to Nurse Moira when I dropped her off. However, she didn't have a fever, because I had checked that at home. And there have been at least 156+ other school days when she looked droopy on the way to school after throwing up her breakfast, and nothing of import was wrong.

So when I picked her up in the afternoon to take her to her OT appointment, Nurse Moira said that Annie had spent most of the day snoozing on her lap. The change from Thursday was so dramatic, we were all pretty sad about it--but not alarmed. And since she was so lethargic, I cancelled her OT appointment, went home, and gave her 5 mg. of hydrocortisone.

Around 4 PM, I checked her temp. Great--it was 100+ under her arm. So I started running Pedialyte in her g-tube, and gave her 5 more mg. of hydrocortisone. She kept the hydro in for a decent amount of time, but gave me back the Pedialyte. So I gave her 5 MORE hydrocortisone.

When Bill came home, we put her in the van and started down to the ER. Since the hail, sleet and frozen ice was all over the road, it took us awhile to get down there. Somewhere on the way, it occurred to me to pray: "Lord, help us to know what to do, and please heal Annie." By the time we drove off the freeway exit, Annie started chattering, laughing, and otherwise perking up. We then began debating whether to take her home, and take her in to the pediatrician in the morning. But we didn't want to get back in line on the freeway, so we went to McDonald's drive-through to relieve our stress with carbs and salt. And as we're driving back to the freeway, we put 2 + 2 together and realized that God had answered our prayer!

I did take her in Saturday morning, just to be on the safe side, and the pediatrician couldn't find anything obvious that would cause her to spike a fever: no ear infection, lungs clear, no swollen glands. She is sneezing, and something may present itself, but as of this morning, nothing.

I do wish Annie could tell me when she's not feeling well, so I could give her more hydrocortisone right away, instead of waiting for obvious signs, like vomiting and fever. I always feel like I'm behind the 8-ball. And it's always a judgment call as to how much, and how long to give her the higher dose, because she can't TELL me what she's feeling. And a person with Addison's needs has an illness coming on, they need hydrocortisone right now.

Now, along with the sneezing/cold thing, came her seizures back. And as of tonight, she's running about 8+ a day again. It's such a one step forward, two back deal. But even with all this, I detect an upward trend. Tonight while I was sitting beside her on the floor, I noticed her attention switching easily from one thing to another. She was playing with her big Princess book, and looking at me from time to time. She also was leaning back on her bean bag chair, with her legs out straight and her ankles crossed, rubbing her feet together like her daddy does. She looked relaxed and natural.

I remember when we were first in the hospital in '07, our friend, Erik, who has some experience with disability, said to watch trends, not days. I know we've talked about that before on this blog--so here's another reminder to watch trends. And although this last week had some speed bumps, the trend is still up.

Jean

Cast all your anxiety on him because he cares for you. 1 Peter 5:7