Toward a Diagnosis

I know some of you have been waiting and wondering about the results of Vance's doctor's appointment last week. I am sorry it's taken me so long to update. Things are just busy around here, and it's hard for me to get more than a minute or two together that aren't already spoken for by someone or something.

We went to see an Infectious Disease specialist at USF on Thursday. Unlike Vance's other doctor appointments, we felt like this one was actually helpful. The good news is that Vance does not have a life-threatening diseases. He doesn't have hepatitus or cancer. His blood tests have come back beautifully, ruling out autoimmune disease, adrenal failure, and other possible infections. The doctor also said that he's sure Vance does NOT have CMV.

So we're left with ... chronic fatigue. They don't really know what causes it, don't have a cure, and can't really treat it. It can last anywhere from a few months to the rest of your life. It can be mild, severe, or debilitating. As best I understand it, CFS seems to be the result of an immune system that just won't shut off. His body is running in overdrive all the time. Basically, the doctor told us that there was no one he could refer us to, and nothing traditional allopathic medicine could do for us. He told us to check out homeopathic medicine and dietary changes, and gave us the name of a doctor who uses some alternative treatment methods for CFS and Lyme disease.

In many, many ways, we've felt very relieved after Vance's appointment. It is, of course, unnerving that chronic fatigue doesn't have a cure or even a standard trajectory. The internet is my enemy here, since it is the outlet for the embittered and malcontents of the medical world. Start searching for information on chronic fatigue and it's all too easy to envision the future with Vance in a semi-vegetative state for the rest of his life.

I was initially feeling overwhelmed and discouraged as we drove home. I kept wondering, "What are we going to do if this doesn't go away?" But that evening, I was overwhelmed with a sense of peace and faith about all of this. We are back to where we were before Vance's "diagnosis": waiting for God to raise him up. I am content to be in that place. I believe that God will heal him, and while we will do everything we can to help him recover, we are ultimately and finally dependent on him to come.

So where do we go from here? We're still working that out. I'm going to be putting Vance on the GAPS diet first. It's often been used to help children with autism, adhd, and developmental delays, but it's a diet that has been helpful for people with UC, Chron's, IBS, autoimmune issues, Lyme's disease, and chronic fatigue. The purpose of the diet is to heal and reduce stress on the digestive system, which is closely linked to the immune system (70% of your immune system is located in your GI tract). I don't know if it will help. I know it's not going to be particularly fun in the beginning stages, but at this point I would spoon-feed Vance an elephant if I thought it would make a difference.

After that, who knows? Researching alternative treatments for CFS feels a bit like walking into a crowded room and shouting, "Who wants my money!?" Everyone has a corner on this market, and it's very difficult to know who is really able to help and who is a quack. And many of you know that my very intelligent, very scientific husband likes treatment backed by scholarly research and peer-reviewed journal articles.

The past two weeks have been particularly difficult, but I have been overwhelmed with blessings in the last four days. Vance has been feeling a good bit better, we had a good friend visit from MN, our friend Dave took Isaac and Claire out for a wonderful 4.5 hours on Saturday (and came back with flowers for me and Gatorade for Vance :), another friend sent us dinner on Sunday, and Dave came back today to mow our lawn and blow the leaves off our roof (thank you, thank you, Dave!). Someone prayed for us last week that the kids would be obedient and peaceful during this time--they've been playing dog and master since Friday for hours and hours. God is taking care of us, and we are beyond blessed.

Blood Tests and Other Mysteries

I'm overdue for giving you all a Vance update, so here it is. I probably shouldn't be writing about this when I'm exhausted (like now), but c'est la vie.

Vance's second blood test came back positive for CMV. Blood tests can have false positives, but with two positive tests, I think it's safe to assume he's still fighting off cytomegalovirus. The blood was drawn almost a month ago at this point, and he's no better than he was in February. This week has been somewhat worse. Case in point: I had a (pretty tasty) black & blueberry pie on the counter, and he skipped it to go to bed last night. You know it's bad when your man doesn't want pie.

He has made an appointment to see an infectious disease specialist next Thursday, and we're assembling a battery of questions for said expert. In the meantime, the words "chronic fatigue syndrome" are being batted around occasionally here. It's always dangerous to self-diagnose with the help of the Internet, but he does have many of the symptoms. Since some people think chronic fatigue can be caused by a Candida overgrowth, I'm looking at putting him on the GAPS diet. It's strict, but if it would get him better, I'm totally game.

We're kind of settling in to a new routine with this illness...the kids are (a little) more understanding of Daddy's need to be in bed, and they don't swarm him as constantly as before. My martyr complex is definitely getting a beat down through all this, for which I'm grateful. Even so, managing our household is pretty solidly a 2-man operation, and I feel pretty wiped out by the end of the day. Lots of moms do this all the time...it's just that I've been spoiled for so long. But I'm getting a little tougher. I think :)

We're more aware than ever that God is the only one who can rescue--both right now and on the last day. He has always been faithful to us, and I see so much good he's working through these past months. Really, truly. But I'm ready for him to say "done!" Until that time, we'll pray for the faith to keep trusting.

Ana Maria Island

Isaac has been begging for a beach trip for weeks now; last weekend Vance felt well enough to go, so we piled in the van for a lovely evening on the sand. I think we determined that it was Evie's 4th beach trip. It was the first time the water was warm enough for her to experience. She loved it! I hadn't planned on it being warm enough to swim, but the lack of proper attire didn't seem to bother her.

Isaac and Claire made some new friends, and were hard at work building walls and moats and such.

It was a beautiful evening.

Seven Months

My cutie is seven months old...closer to one than a newborn. She celebrated the auspicious day by cutting a tooth. This is unaccountably exciting to me. It takes no talent to get a tooth, and as far as I know most every baby cuts them. And yet there I was, squealing to everyone who would listen about the new arrival.

We also celebrated her 7 month birthday by taking her into the pool. She was not really a fan. The water was 82 degrees, which is probably not warm enough for her discerning little self. Maybe we'll try again when it gets to 85 or so.

I noticed that she has been sleeping better in the last few days, and I wonder if her short naps were due to teething. I can never identify teething except in hindsight.

The girls are sharing sisterly confidences.

Everyone wanted to get in on the photo session. One day I will get a picture with all of them looking and smiling at the same time!

We are doing a bit better around here. Vance has had some more fatiguing days, as we expected, but the second half of the week has not been as exhausting as previous weeks. I started to get sick yesterday, but slept for 11 hours last night, and that seemed to stave it off. Thank goodness! Overall I think we're feeling a little more hopeful that Vance is (slowly) mending.

Thanks again for all your prayers and care--we have felt very loved by you all!

Vance: An Update

Many of you have expressed your concern for Vance over the last few weeks--here's an attempt to fill you in on what's going on with him.

We are on week 6 or so of the relapse (or so we think), and about to hit the 3 month mark for the total virus run. It seems these days that Vance has several good days in a row (usually Mon-Wed), followed by the rest of the week in bed (usually Thurs--Sun, it seems). The well/sick periods don't seem to have any correlation to rest/sleep/eating habits, etc. Right now he's having one of his good days, and I have learned to just be thankful for those without expecting this to be the beginning of the end. We're both learning a lot of patience.

He went to see the immunologist last week, and that was very discouraging for me. Basically he told Vance, "On the scale of 1-10, you're a 10! Everything about you looks perfect. There's nothing wrong with you!" Except of course, there is. The immunologist even seemed skeptical about the CMV diagnosis, leading me to wonder if we were dealing with some dark horse disease that nobody knew about. It didn't help that after he went to the doctor, the rest of the week was pretty rough.

We decided to send him to his regular physician on Monday to get his blood drawn again. While the first titer indicated CMV, it takes a second test to confirm. If we know it's CMV, then at least we know what to do...wait. If it's not, then we start the search. His doctor said there was no obvious alternate diagnosis...in his words, if it's not CMV, figuring out what's wrong would be "like hunting zebras." I'm assuming zebras are hard to catch? :) At any rate, it will take a week or two for the test results to come back.

Last week was pretty difficult, I must say. I was exhausted, physically, emotionally and spiritually. I had all these expectations that weren't being met. I expected Vance to be making some sort of progress toward health. I expected the immunologist to be helpful. I expected the kids to understand that we were in emergency mode, and act like perfect little angels in consequence. All of those went unmet.

I have been fighting for faith, hope, joy, peace...but last week seemed to show more losses than wins. I felt like I was drowning in chaos, crying out to God and hearing only silence in return. In desperation, I have started to get up 45 minutes earlier so I can have a more profitable time with the Lord before everyone is up and the day is running away with itself. That has helped. But ultimately, the Holy Spirit has been comforting me and reminding me of my identity--not in my failures, but in Christ who is my "all in all".

Vance has been struggling somewhat with discouragement, weariness, etc...but overall he has been so patient and longsuffering through this whole process. He continues to express his trust in God in all the ups and downs. Amazing.

I'm still having difficult days (like today, when I'm starting to feel sickish myself--noooooo!), but my feet are touching bottom. Hiding myself in Christ is feeling more like a reality, less like mere words. And that is worth everything.

Rock of Ages, cleft for me
Let me hide myself in Thee
Let the water and the blood
From Thy wounded side which flowed
Be of sin the double cure
Save from wrath and make me pure.

Happy Easter

Sunday was the best day of the year. I did not really understand that until I became an adult, but now Resurrection Sunday (as my mom so rightly insisted) is my favorite holiday. I think I've said that before.

This year I celebrated by bouncing babies and rocking infants and changing diapers. You should have seen me trying to get everyone into their Easter finery, putting a hot cross bun and a banana into each sleepy hand, and piling them all in the car by 7:45! Vance stayed home until the second service so he could rest, which partly explains why this Easter shot of the kids is so haphazard (and this is the "best" one I got!). It doesn't really show off the heirloom dresses that Granny smocked for us girls growing up, but it does show that we were alive and well, at least. I didn't have an assistant for this one...and Isaac let Eve roll into the dirt afterwards :(. Fortunately she wasn't hurt in the slightest, and didn't even cry.

I'm working on taking some shots to enlarge for our very undecorated church nursery...and I got one halfway good one of Evie :)

I had a lot to be grateful for on Sunday. Firstly, the resurrection--Christ's and mine. Secondly, that Vance was well enough to come to church and enjoy the rest of the day with us instead of in bed. Thirdly, friends to come over and celebrate with good food, lots of little kid chaos, and fun in the pool. Fourthly, for my very comfortable bed that I crashed into by 10pm :).

Family Shoot

Everyone wanted to be a photographer this morning! Here's my picture.

Vance's work.

Isaac's picture.

And Claire's. You should have seen Claire try to shoot a camera approximately as large as her torso! So funny :)

Our Strawberry Girls

Their first matching outfits are, appropriately, strawberry dresses. I tried to get a few shots before church this morning.

"Behold, the baby!"

Eve & Great Grandma

These are the pictures I meant to post last time...not sure why they didn't show up. I meant to get some more of Eve with her 2 other great-grandmothers when we were in NC, but I didn't check my camera battery before we left. Phooey on me.

Aren't they so cute together?

Thanks for coming, Grandma. We love you!

6 Months

Well, I'm a bit behind, and my baby is really 6.5 months. Close enough, right? :) These pictures, however, were taken right at 6 months. My grandmother, grandfather, aunt, and 3-year old cousin came for a visit before my other cousin's wedding. It was so fun to see my mom's side of the family. We don't see enough of them...maybe one of these days we'll have to plan the family road trip extraordinaire and get all the way up to PA.

Eve got her 6 month checkup this week, and she has clocked in as a petite wee thing. Except for her head...apparently she's got mine :/ Length: 26 in" (42%) Weight: 15 lbs (22%) Head: 17.5" (94%) Since I'm pretty sure that she doesn't really belong in the 22nd percentile, we're beefing up her feedings a little. Seeing her weight drop in the curve always makes me nervous, but at this point I'm doing all I can to keep my supply up. I'm just not one of those powerhouse mamas with milk to spare, I guess. Unlike many of my friends :) At 6 months, Eve is adept at sitting, and she is so stinkin proud of herself for this accomplishment. She will often sit without toys, just grinning at anyone coming near her. She is starting to reach for EVERYTHING, and I predict she will be active like her predecessors. Crazily enough, she has skipped rolling from back to front. She has no interest in doing so whatsoever. My pediatrician doesn't seem concerned. She has also decided to make naptime a battle, which is disappointing, to say the least. Things are improving, but she is no longer taking that blissful 3-hour afternoon nap. I guess I shouldn't have expected it to last :). She is talking a lot these days, still gives her biggest smiles to her brother and sister, and loves to be held 24/7. I cannot believe you have been with us for half a year, sweet girl! We can't imagine life without you and your smiles.

Alive

It's been about a month since I've posted. And we are still alive. But it's been a rough patch.

Early on in February, Vance had some weird virus...if you were at the kids' birthday party, you might have noticed that Vance spent a good part of the party hiding in the bedroom. That's kind of how the last two months have been...Vance collapsing in bed every free second there is, and me trying to hold everything else together without succumbing into the pity parties I am unfortunately prone to.

That sounds really bad, and I don't mean to make it more dramatic than it is. Much of life looks somewhat normal. Vance still holds babies and functions on a basic level, so it's not like he's an invalid. He even had a week or two that felt pretty normal in the middle there, but I think he worked himself into the ground at that point, and the relapse (if that's what it is) has been worse than the initial virus. His doctor diagnosed him with a different strain of CMV than he had four years ago. It's a relative of mono.

Adding insult to injury, we both got the stomach flu two weeks ago, right after a slew of company. It was the first time we had ever been sick together. It was pretty pathetic--both of us shivering in bed with 104 temperatures. We were so desperate we had to call some friends to come to our contagion-filled house to take the kids for the morning. They came in looking like a HAZMAT team with their masks on :). Thank God for friends, especially when family is a day's drive away. We muddled through, but I think that second virus pretty much stripped Vance of his last reserves.

With all that, Vance was unable to fly to Spain/Italy for his work trip. I was able to get everything together so we could at least spend a week in NC for a little R&R. Vance got a lot more rest in than he does around here--as hard as I try, life with 3 kids ages 5 and under is just not the most peaceful environment! All that rest didn't get him where we had hoped, though, and he's still dragging.

So you can pray with us that this virus would end. Soon. And that we would both fight the discouragement and fears that creep up. Vance's doctor recommended that he see an immunologist to try to get to the bottom of this mysterious thing. So we're going to take that next step. But our real (only!) hope is Jesus, our advocate and healer.

Thanks for praying.

First Food

One of the things I've done differently with baby #3 is to jump into cloth diapers. Isn't it funny how cloth diapers were so passe after disposables came in, and now they're all the rage? How can something that holds baby poo be chic? I'm still not sure about that one :).

I had considered cloth diapering when I was pregnant with Isaac, but paying $1 wash/$1 dry quickly nixed that idea. I was reluctant to begin anything that would mean more work for me this time around. However, my kids have had significant diaper rash issues, and I wanted to see if cloth would help their bottoms. Let me tell you, I am sold. Evie has had NO diaper rash...it's been such a relief. I'm not sure if I would have taken the leap without that skin incentive, but I've been so pleased at how easy they are...and having virtually no blow-outs is a definite plus.

Vance talked me into letting Eve start solids this week. Being lazy (and using cloth diapers this time), I wasn't too eager to get going, but I admit that it is really fun to see her try new foods. She started out with sweet potatoes with a healthy swirl of good butter. And a little salt. People, it's better for her that way...and who would want to eat veggies without butter? Not me, for sure.

Still trying to decipher the flavor profile.

Not sold on the mouth feel.

I think she's a true Whitaker child. Despite her suspicious face, she took to food like a duck to water. The first 8 spoonfuls or so she was still getting the hang of swallowing, but she loved it. I gave her avocado the other day, and she likes that, too. Next thing I know, she's going to be fighting me for my steak.

Morning Magic

I am not a morning person. Many of you know this.

But I do enjoy the mornings when Evie gets up (a little) earlier than the rest of the crew. We get to cuddle in bed and she bats her hands around happily in the air. She also smiles at me, which is what makes it so fun.

Oh look! Little Miss Bedhead is up! She's pretty fun, too. Looks like it's time to move on to the crazy/busy part of our day :)

Beach at Sunset

Today after church we crashed at a friend's house, and then went to the beach after naptime. We've been here a year and a half, and this was our first time at the beach at sunset. It's my favorite time of day at the beach, and I can't believe we hadn't done this yet. It was so beautiful. Isaac saw the boats out in the sunset, and his first question was, "Are those pirates?" Vance looked at me and said, "I'm going to be so sad when I don't hear questions like that anymore."

Me too.

It was a little chilly and windy, which I wasn't expecting, so after our walk Isaac spent a lot of time under the blanket.

Mom always said when we went camping that she thought, "Why are we doing this?" as she went through all the work of packing. Once we were actually camping, though, she rediscovered why it was worth the work. Today was like that for me. I didn't want to be up after midnight getting our lives organized enough to be gone all day, but once we were at the beach, it didn't matter anymore.

I think when the weather gets a little warmer, we'll grill out at the beach for dinner some evening. Who's coming?

More Fun in the Kitchen

If you know Claire, then you won't be surprised that she was ready to jump in the cooking action today. We packed a lunch to take to the park, and Claire was in charge of shredding the cheese. It took maybe 15 minutes, but she loved every minute of it. And felt so proud of her little self.

I let Isaac help me chop the carrots, but it takes a bit of pressure, and he needed help. He could manage the strawberries with a paring knife, though, and he was very careful. You can see that he's working on his proper form, but doesn't have it down yet. He is trying to curl his fingers, though.

That was a carefully packed lunch, let me tell you. Made with pride in the U.S.A.

Achievements

Today I inducted Isaac into the culinary world. Appropriately for us, we started with PB&J.

I was inspired last night after reading one mom's food blog...she lets her 3 and 8 year olds do everything in the kitchen with her...chopping, peeling, you name it. She has pictures on her blog of her 3 year old with a 9" Henckel's. I'm not quite ready to give my knives to Claire, but I realized that Isaac was ready for a little more responsibility. And he was. I sliced the bread, but he assembled the sandwiches, washed the grapes, and I gave him his first knife lesson. I held his hand and we sliced red peppers together. It was fun, and the proud look on his face as he served up lunch was priceless.

I think tomorrow I'm going to teach him how to scramble eggs. My goal is to retire from the kitchen by 2012.

Here is Claire's new accomplishment:

I'm sure that's a pretty normal drawing for a 3 year old, but it's not normal around here. I'm no artist, and Isaac is too much of a perfectionist to get out there and try. So this is the first human sketch I have received from a child of mine. Not too shabby! She actually drew one on the Magna Doodle with recognizable appendages, but she erased it before I could get my hands on it.

It's so fascinating how different personalities make way for different abilities. Isaac is careful, and has an eye for perfection. Blessing and a curse, I say. Claire is eager, and ready to try ("All by myself!") and keep trying. Her threshold of frustration is much higher. Again, it's a blessing and a curse.

And Evie? She did roll over at nap time two days ago, and she is an expert at toe nibbling. Everyone has their level.