Tuesday, 28 February 2012

Operation 850: 100 Things

Well, iron pills have given me my life back. Or at least enough energy to get some things done. My main focus lately has been how on to fit all five of us into our 850 square-foot apartment. I call it "operation 850" in my head because that motivates me more than "help! our apartment is too small!" Honestly, if we didn't have so much stuff it would probably seem more spacious. However, if you have a child you know that they each come with an amazing amount of clothes/toys/gadgets-to-make-life-easier, and since we are having three boys I am not tossing out the clothes/toys for the in-between sizes/stages, which is making for quite a storage conundrum. Did I mention that our storage is about as large as our suitcases? Yep. It's tiny.

Before we left for Christmas I did a massive cleaning out and took many a garbage bag to the Salvation Army. It felt good, but somehow between the new Christmas gifts, Tommy growing another size, and me needing clothes to accommodate the big belly, we ended up replacing at least a quarter of what we gave away. Ugh.

So, I cleaned out a closet, and our desk, and went through my drawers again, but we still needed to get rid of more and I was out of motivation. Then I read a blog challenge about getting rid of 100 things to clear up clutter. It sounded like just the goal I needed.

Last week I started a tally sheet and began going through everything one more time. Although it was more difficult than it would have been if I hadn't already cleared out (at least once) every space in our house, it helped put my junk in perspective. I was determined to get to one hundred, so it became a matter of deciding if I liked something enough to keep it over and above something else. That made many things look much less important. Right now I am up to 109, and the trunk of my car is once again loaded up with bags for the Salvation Army. I'm still not sure exactly how everything will fit once the baby arrives, but it feels good to have cleared out even more stuff!

Start your spring cleaning off by throwing-out/giving away 100 things...you will feel better, I promise. And, it is so much easier to toss junk when you have a set goal. I created rules for myself: no counting obvious trash or things that just came home that I would pitch anyway; individual pieces of paper don't count, but magazines you were keeping do; things that come in pairs (shoes, earrings, socks) count as one per pair; allow your husband to decide what he keeps/tosses (unless he doesn't care whether or not you pitch his stuff, but mine does); be willing to give the boot to more of your stuff than anyone else's, but throw away as many horrible, junky little toys as you want (seriously, how do kids accumulate so many little tiny plastic pieces of garbage?). Happy tossing!

Jeff and I were quite lucky that the boys decided to play nice this weekend, which gave us time to sort through many nooks and crannies. My sweeties:

Sunday, 26 February 2012

I Like Bananas

Saturday, 25 February 2012

18 Months Already

We had a far-less dramatic doctor interaction this week: Nic's 18 month check-up. As expected (based on the fact that he just saw the hematologist a few weeks ago), Nic is currently not showing any sickle signs, and his growth continues on the same track it has always been on: average. He is smack in the 50th percentile for height and weight. The check-up was quick and easy. I learned to check his spleen for sickle swelling (yee-haw), he got a shot, both kids got suckers, and we were on our way.

I was able to speak to the doctor regarding her opinion of where we should go for Nic's ER/hospitalization in the future, and she confirmed our suspicions that the hospital closest to us is not the place we should be taking him. This gives us something to think about as we consider where we should settle if Jeff gets hired on at the lab permanently.

Other interesting things that Nic has been up to include climbing everything in sight, learning how to turn on our microwave, toaster oven, and breadmaker (none of which are on the floor), becoming a rather tough wrestling opponent, dancing, "singing," playing ball, and running, running running. He loves to read, and we are in the lovely "over and over and over" again stage.

Nic's sign language is getting quite good, and he is making many more sounds. I like his speech therapist, and he is making some progress, although he frequently refuses to perform for her. It is very frustrating to me that he won't say a single word to her, and often won't even make sounds, when I know he will do them for me as soon as she is gone. I'm a little worried she is going to think I'm making up his words. His favorites are Momma, Daddy, and cheese. We also get an occasional choo choo or train, animal sounds like "moo," "baa," and "rawr," he has a sound he will make "ra, ra" for raisins and (yes, this is embarrassing but the therapist asked me to make some poor parenting decisions in order to get him to make sounds) he says cheeto fairly well. It's "cheeeeee-toooow." It's basically the word he is most enthusiastic about. He does not like to talk unless there is food in it for him, and then he becomes much more enthusiastic. Right now the biggest issue with him refusing to talk to the therapist is that it hampers her ability to discern whether he has a language issue or a speech issue. His receptive language is really good, so I think it is possible that he is having trouble on the word-formation end of things. We'll see.

And now, for some recent pictures of our growing boy:

Wednesday, 22 February 2012

It is Well...

This afternoon Tommy and I were baking cookies when the phone rang. It was our hematologist calling to give us the results from Nic's most recent blood work. After he asked three times if everything was fine with our family/home, I knew the news wasn't going to be good. Nic's fetal hemoglobin levels have fallen enough for us to know that he will not get to keep his fetal blood cells for the rest of his life as we had hoped. They are still affording him some protection, which explains his health, growth, and lack of symptoms thus far. That said, if they continue to fall at the same rate that they have been, he will begin to experience symptoms of sickle cell disease and failing health, although for now he should have some protection from the fetal hemoglobin he has left.

After I hung up the phone, I scooped up Nic and sat and cried. I cried for the pain he will experience in the coming years. For the physical deterioration he will face. For the weeks he will spend in the hospital being poked and prodded and having transfusions. For the "normal" activities he will not be able to pursue, for the sports he may love, but not be able to play. For the all of the missing out he will do because of sickness and exhaustion. For the funeral I will probably attend. For the grandchildren he may have, but will never see. And then I stopped, because my crying confused Tommy to the extent that he started crying too, and I realized it was time to stop mourning for the time being and tend to my boys.

We returned to our cookie dough. As we finished the mixing, Tommy spontaneously began singing: "When peace like a river attendeth my way, when sorrows like sea billows roll, whatever my lot thou hast taught me to say, it is well, it is well with my soul." So we sang together as we cleaned up, even though I had to pause a few times to prevent myself from choking up again. I thank God for the reminder that it is well with my soul.

Perhaps it was fitting to receive the call today, on Ash Wednesday. Today Christians meditate on our mortality, on the fleeting moments of our time here on earth, and on the temporary nature of our current bodies. From dust we came, and to dust we shall return. As imperfect as Nic's body may be, in the end, he and I, and even the most perfect human specimen are the same. We came from dust, we will become dust once again. Praise God, that he continues his work even after our deaths, and we place our hope in His transformation of our earthly tents into heavenly dwellings through the sacrifice of Christ. Dust and ashes will not be the end of our story.

While I wish that Nic's final diagnosis would have been different, I am glad to have clarity after months of waiting. I feel more free knowing than not knowing, although I miss the hope that maybe, just maybe, Nic wouldn't be sick. I don't think it is a coincidence that I have been reading 2 Corinthians this week, or that this passage in particular stuck out to me:

"But we have this treasure in clay jars, so that it may be made clear that this extraordinary power belongs to God and does not come from us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair, persecuted, but not forsaken, struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be made visible in our bodies." (2 Corinthians 4: 7-10)

Nic's clay is more fragile than most. It won't last as long. It will certainly be cracked, and painful, and difficult, but may the fissures in his jar allow the glory of God to shine through more brightly.


Monday, 20 February 2012

Lots of Love

Forgetting about our trips to the doctor and such, we had a very fun time celebrating Valentine's day. I made the boys waffles in the morning, we had special pink fruit for lunch (watermelon in the middle of winter), I made one of Jeff's favorite meals for dinner, and Tommy and I made heart-shaped cookies for dessert. I also got some beautiful potted tulips from Jeff. When he was purchasing them the cashier commented that it was wise to buy them potted so you can enjoy them year-round. Maybe I'll save the bulbs so I can enjoy them again.

Continuing in my love theme - last week I happened to get tagged with two blog awards. I am going to save time by posting both and the little-known facts about me in one post. (The conditions of the awards are to list the sender, share facts about oneself, and pass it on). Here goes:

The first came from Elizabeth at Ordinary Time. I would highly encourage you to take a look at her blog, especially if you are interested in God, adoption, larger families, home-schooling, cooking, sewing, crafting, hospitality, and parenting. Elizabeth and her husband have nine kids, with another on the way home very soon (please say a prayer for her travel approval to come this week) from China. We met Elizabeth and her family at our church in Evanston. Their home was one of the places we stayed during our period of homelessness between our lease ending in Evanston and the move-in date for our current apartment, a kindness we will always appreciate. This qualifies me to say that it is ridiculous how calm and organized her house is considering the number of people that live there. Seriously, if my kids turn out half as polite and calm as hers I will be very pleased. Here are some of my favorite recent posts:

"You're so good"
Hope for the hopeless, or baring my soul
The cost of raising a child
O be careful little brain what you think

The second came from Laura at Fingertip Meditations. Laura and I endured grad school together. Since I don't generally make my friends take IQ tests I can't prove this, but I think it is safe to say she is one of the smartest women I know. She is a wonderful historian and I enjoy her history blog as well. She also has this book available and this one coming soon. Laura writes about faith, thankfulness, and life. Some recent posts by Laura that I enjoyed:


And now, seven facts about me, from birth to present:

1. I was born three weeks early and only 5 1/2 pounds. I'm hoping this baby will be as courteous and kind to me as I was to my mother. He can always catch up later...

2. I have always loved detective stories. The obsession started early with Inspector Gadget and Nancy Drew. When my mom was pregnant (and I think she was pretty much always pregnant when I was little) she would lay on the couch in the afternoons and read me chapter after chapter of Nancy Drew. Then Dad read me more at bedtime. Talk about good parenting.

3. Speaking of books, when I got my own room (I think I was eight), I decided to set it up as a lending library. I organized all my books alphabetically (by author, of course), stamped them with a "belongs to" stamp, and created a check-out system. I named it the "Paul C. Cox" memorial library after my (still-living) grandpa because he was the most important person I could think of that I personally knew and that would visit the library, which I thought was necessary for it to be "memorial."

4. When I was growing up my parents owned more than one 12-seater van with vinyl seats and no AC. I have never been so miserable (in my teenage mind) as the three week family vacation we took to Colorado, Arizona, New Mexico, and Utah when I was 13. That said, hours of books on tape for my young siblings (Jamberry, jamberry, jamberry jam), eating mostly ritz crackers sprayed with easy-cheese (our idea of a delicious traveling lunch), camping in the heat with a raging stomach flu, and stopping at every single kiva ever built in the southwest so my mom could take a picture did make the trip very memorable, and they say that memories create happiness.

5. For our first date Jeff took me to the Cheesecake factory. He ate Cajun Chicken Littles (aka grown-up chicken fingers) with a knife and fork. I knew he did this, because I'd known Jeff forever before we started dating, BUT, it still seriously annoyed me because I had ordered a chicken sandwich that turned out to be ridiculously slippery and I could barely take a bite without something shooting out of it. I thought the least he could do was to eat his chicken nuggets with his fingers like a normal person to make me feel better. Alas, to this day he still uses knives and forks on things that are obviously finger foods. I have learned to live with it.

6. Turning 30 didn't phase me at all. Turning 31 was a little harder, because I didn't want to be "in my thirties" as opposed to 30. At least I have a long time before I have to say I'm in my "late thirties." That just sounds old. However, as Tommy reminded me the other day after I complained about being "an old woman" because I can barely move these days- "Mom, you AREN'T an old woman, you're still smooth!"

7. The only food craving I have had so far with this pregnancy is for shawarma from Al-Dar in (this will make you laugh) CONGO. Seriously, what is wrong with me? Now, I will describe it so you can laugh at me further: Flat bread, beef shawarma, mayonaise coleslaw, french fries, and pili pili (Congolese hot sauce) all rolled up! It may sound really gross (especially the french fries), but I promise it was like manna from heaven when I was there, and it was cheap to boot. I have no hope of obtaining it here, so I will never know if it is really as good when you aren't already very hungry and tired of awful guest house fare. I crave it nonetheless.

Now to pass it on. I decided to keep it in the family and pass the awards on to my blogging sisters, Katie and Colleen. If Emily blogged she would get one too, but alas, she only tweets and pins.

Finally, a big loving thanks to Carrie at Amazing Grace and A Safe Haven. We won one of their "More Love" giveaways! Now we are the proud owners of a Lion King DVD. Visit her blog and her "More Love" store to help bring home two beautiful little girls from Congo! Maybe if I beg hard enough she will mail me some of that shawarma when she goes...

Saturday, 18 February 2012

And Now, the Hard Conversations Begin

After lunch a few weeks back Tommy stood up and announced,

"When I was a very tiny baby I was in your tummy!"

I had to tell him he wasn't. I cried while doing it. He was so excited about the prospect of having grown inside of me, just like our next little guy, and so proud that he had. It crushed me to see his triumph turn to disappointment as I explained that his story didn't begin with him snuggled up in my womb.

I knew that my pregnancy would bring up questions for Tommy. He is at the age where questions about the past, skin color, and adoption seem to really crop up, and I expected that he might be confused. That said, considering how often we have talked about his adoption, looked at pictures of our trip to Uganda, discussed his orphanage and the nuns who cared for him, and even broached the subject of "first families" and "forever families" he apparently still needed to sort some things out. This makes me feel even worse. I wonder, did he think that I gave birth to him and shipped him to Uganda for fourteen months before deciding to pick him up again?

This week we looked at his life book (which we keep out on a shelf so he can look at it whenever he wants), and Tommy pointed to the only picture we have of him before his first birthday. It was taken June 27, 2008. He said, "Look mom, you took this picture of baby Tommy." Again, I had no idea he thought that. We have always been very clear that we waited and waited for Tommy, and during that time that we were longing for and praying for a child, he was in Uganda. I know that his three year old logic/understanding of time sequencing is the real culprit here, but I still hate that he thinks that we might have known about him and still left him.

We've also been having some interesting conversations about skin color. These started a few months ago, when he told me that his Papa (my dad, whom he is named after) used to be "a little boy with brown eyes and brown hands, just like Tommy." My dad is blue-eyed and white as the snow (which you might guess if you have ever seen me). It turned out that Tommy thought that since he and Papa shared a name, that they also looked like each other. Therefore, Papa was a black child who grew up into a white man, and Tommy would do the same. He also let me know in another conversation that he was waiting for his hair to grow in straight. Yikes.

Tommy is growing up in a home chock-full of African art, storybooks with people of all skin colors, toy characters that are both black and white, and where we frequently discus the beauty of brown skin and curly hair. Really, it is a topic that comes up daily. We make a very specific effort to emphasize that God made people with all different colors of skin, eyes, and hair, but that his creation is good in all shades, and that we all work the same under our skin. It makes me wonder what kids who grow up in (allegedly) "color-blind" homes think about their appearance.

Tommy is also becoming much more conscious of the shades of skin of the children and people around him. We make an effort to ensure that our kids have interactions with other kids who look like them, and I am thankful that we live in a diverse enough community that we have both friends, acquaintances, and neighbors who are not white (not to mention the many other families with children who were adopted that we have the privilege to spend time with). He has become especially aware of other children who look like him, but he also likes discussing the various shades of skin he notices. He understands that not all people who are "black" are the same color, and neither are all people who are "white." This has led to a desire to have many different words for all the shades, and I may need to go look at paint chip samples or something, because I am running out of variations on "white." His current favorite word for brown skin is "chocolate" and he has been known to describe varying shade of brown by adding that some "chocolate" people have "a little bit of vanilla" mixed in.

Tommy recently told me that he is hoping that the baby has "chocolate" skin, because it is so beautiful...and then we had to have a talk about the probability of the baby looking a little paler than Tommy and Nic. I will admit to secretly hoping that the baby will come out with dark skin and curly hair, but given the pasty-paleness of both of his parents it is basically impossible. He has a seventy-five percent chance at brown eyes though. Here's to hoping...

Wednesday, 15 February 2012

Not the Post I Had Planned

I have a few things I have been thinking about and meaning to post about, but yesterday's OB appointment was so awful I'm venting about that instead. First things first, the baby is fine. And now, the rest of the story:

I'm 28 weeks, so this appointment I was scheduled to drink the sugar drink, have my blood tests and receive my Rogam shot (my blood type is negative). Everything started out fine. I did my weigh-in and blood pressure, gulped down the orange drink, and waited for my OB to come. I go to a practice with four OB's, and I have no attachment to any one in particular, so I just see whoever is available at the time. This time it was the male OB, and he was fine last time, so I was expecting a smooth visit. He asked if I had any questions, listened to the baby's heartbeat, and then got out his tape measure. After measuring, he stepped back and said,
"Well, you're not huge."

This is true. I've been short since the day I was born and have never been described as huge in my life. Then he asked when I go back to the high-risk doctor for my next check-up. I tell him 31 weeks. He replied,

"Good, because if you weren't going already I would need you to schedule another appointment."

What?!? Of course, I asked what the problem was, and he informed me that my uterus is now measuring smaller than it should be. At the last appointment it was right on track, so this is a change. Then he asked me one of those questions that can only scare the pants off any expecting mom,

"So, have you felt the baby move at all lately?"

Now, having just heard the baby's heartbeat I know that he is currently alive, and I have felt him move lately, so I say yes and repeat that my measurements were fine at the 20 week ultrasound and 24 week uterine measurement. In desperation I offer up that I was a small baby. He said,

"Ok, then everything is probably fine."

Super. Probably fine. I asked again if he was sure, and he reassured me again, something about ultrasounds being more accurate than tape measures. I brought up the whole "remember my last pregnancy" thing, and he said that SRPS had been ruled out. I answered that yes, they say that, and he agreed,

"They are sure, although it's true they can't be 100%."

I went back to the waiting room to sit while the orange drink sugared up my blood.

I had a book, and I tried to read, but the words were swimming in front of my eyes. I checked my calendar. My next high risk appointment was not for three weeks. Three weeks. Three weeks of wondering if everything really was fine. Of worrying every time the baby sleeps and isn't rolling or kicking. Of not know what exactly might be wrong.

I thought about my options. My high risk doctor is awesome. He is so compassionate and has fit me in quickly before. I could call and see if my appointment could be moved up, but it still might be a long wait. Also, it might be too early to check my placenta, so I might need another referral. I thought over whether I was being irrational, or unreasonable, or whether I just needed to stick it out. I prayed for wisdom, and peace. I realized that there was no reason to put myself and my family through three weeks of wondering, because, after all, this is why we pay for medical insurance. I went to reception and choked out a request to see the doctor. I could barely even talk I was so upset. I was able to go back and speak to a nurse, and then the doctor, and he agreed that I shouldn't have to wait, and since they had an ultrasound machine in office he would just check things out. I was so thankful (and also a bit indignant that he would say all those scary things and not offer to ultrasound in the first place since it was clearly so easy).

Ten minutes later the mystery of my too small uterus was revealed: the baby has decided to hang out in a very odd position. Apparently he is completely horizontal. This explains why I am not poking out much, but have the girth of a hippo. Seriously, I am w-i-d-e. It also explains how the baby manages to use my bladder as a punching bag day and night. In good news, he is above average for estimated weight and his bones continue to measure exactly on target.

I finished up my blood draw and shots...and had yet another opportunity to explain the whole "children without pregnancy" miracle to a nurse. She was very interested in the adoption process though, so it was fine.

I left the appointment very shaken. I know that doctors have to deliver hard news to patients often, and that this likely leaves them a little calloused, but seriously? I can't speak from the viewpoint of a "normal" pregnancy, but I really doubt that any mother would feel comfortable leaving an appointment with that kind of doubt hanging over her, and much less one who has been in my situation. Is it really so hard to anticipate that telling me that something might be wrong, especially in relation to the baby's size, would bother me or cause me to worry?

Needless to say, when I scheduled next month's visit I opted for a different doctor.

Sunday, 12 February 2012

Viability, and Gobs of Other Pregnancy Stuff

Technically baby Klug has been "viable" since 24 weeks, which means that if he were to come too early he would have a chance at survival (babies can live when they are born even earlier than 24 weeks, but it is rare). The odds of survival at 24 weeks are still to low for comfort, but these odds go up dramatically after 28 weeks, which is where we are as of today. This makes me feel much better. Now, I realize that I probably shouldn't even be thinking about things like "odds of survival" and such, considering that statistically it is very unlikely that something would go wrong at this point, but I've been on the wrong end of one of those statistics before, so thinking about the "what ifs" was pretty much bound to happen.

It's odd to know that we have passed so many critical milestones, and I have no idea what most of them are because I don't pay any attention to fetal development or what's happening this week in my pregnancy. I did that the first time around, and I'm just not interested this time (as if I have time to be trolling baby websites, when pinterest is obviously far more important). I know all the important stuff is in place, because I saw it on the 20 week ultrasound, but I have no idea what the little fellow is up to, other than clearly getting larger because I certainly am growing.

I've officially hit that point when people who don't know have started asking, albeit with hesitation, if I'm expecting. At least once a day Tommy looks at me and says, "Mommy, wow, your belly is SO FULL of baby." I respond that the big belly phase has only just begun.

Right now I have a slightly below average amount of energy. I think I would actually have a great deal of energy if two certain children would decide to stop waking up at 5:45 every morning. Or if Nicolas hadn't decided to cut eight (yes, eight) teeth this week. It appears we are about halfway through that wretched process. Only one more eye tooth and three more molars to go. Thankfully, Jeff is the best husband/dad and he feeds the early risers breakfast and keeps an eye on them while he gets ready for work, but I can't get good quality sleep with all the noise they make. It hasn't helped that both of them are then very cranky all day because of waking up too early, and that has been rather draining too. I'm bummed because I'm pretty sure this is supposed to be the "best" part of pregnancy, and I would like to enter into the uncomfortable phase with a few good night's sleep under my belt. Before the boys started their undesirable morning routine I was feeling fantastic and getting so much done. Now I am starting to get antsy that I'm going to run out of time.

We have a few big projects (along with a million little ones) that need to be done before I will feel ready for the arrival of the little man. First, we need a car that holds three car seats. We currently are a one car family, and that one car is a Corolla. I love it, but there is no possible way to fit three car seats in the back. Trust me, we would if we could because we really like our car and its awesome gas mileage. But the physicist has declared that three car seats cannot fit no matter how we engineer it. Thus, we have decided to go big. We are the kind of people who drive our cars for a very long time (the Corolla has been in service for ten years now), and in the next ten to fifteen years we expect that we will need room for more than three kids. I believe I've mentioned that I'm not "done" until I have a daughter that I get to keep. We may take a breather after this one, but we'll see. I have a hankering to buy sparkly pink tennis shoes, and Jeff simply won't allow his boys to wear those.

After test driving and climbing in and out of numerous vehicles I have decided that I absolutely want a minivan. I am just way too short for a crossover or large SUV. We are looking at eight-seaters so that we have the ability for maximum expansion (Tommy has already started asking for one more brother and two more sisters). Now we just have to bite the bullet and actually buy one. It just feels so wrong to spend so much stinking money on a car. They cost as much as an adoption! And they aren't nearly as cool of an investment. I don't image I will be receiving any kisses from my minivan, no matter how well I take care of it.

We also need to figure out where the baby will be sleeping, where his clothes will go, and how on earth we are going diaper him. I am secretly hoping that Nic will potty train himself (I am so not fool enough to try) miraculously before the baby comes, and then I can just use his set of diapers for the little fellow (in case this confuses you or sounds gross, I use cloth diapers, and they are the one size fits all sort. I bought the current set thinking it would be a great investment because they tend to last for more than one child, but I didn't really think through the whole two kids in diapers means buying two sets thing). As far as sleeping, I think we have a decent plan for the first few months, because we can keep the baby in the bassinet of the pack-n-play in our room. I am really hoping that after that we will be ready/able to move to a bigger place. If not I may start strapping children to the ceiling. Hammocks maybe? Tommy would actually probably like that...

We are planning to go on one of those hospital tours sometime in March, since the April tour is a little too close to my due date. We are also going to do an online birth class. Since I will be doing the whole labor thing without the benefit of crazy doses of narcotics this time, I figure I should probably have some idea of what is going to happen. It's funny, when I was looking at the schedule of classes that my OBs recommend, I turned to Jeff and said, "what do all these people do with their kids while they attend so many classes?" Then I realized that most of the people who attend birthing class have never given birth before, and they don't have kids to worry about. I'm sure they find it great fun to attend a class eight weeks in a row, or all day long on Saturday, because they don't have to think about babysitting!

Wednesday, 8 February 2012

When No News is...No News

The lab tech that did Nic's tests last week forgot to send that extra vial of blood off to Mayo clinic for the ONE TEST that we really needed. I wonder what he/she thought it was for?

Which means, not only do we not have any answers, but Nic had to get his blood redrawn this afternoon. Since the last draw was only a week ago, he had some pretty distinct memories of the experience, making this draw a lot more traumatic. It's so much easier when they don't know what's coming.

Needless to say we are pretty irritated that he had to be poked again, but, what could we do? We still attended the appointment with the specialist. Nic looks great and has no indications of sickle cell disease. His iron levels are good, he has no signs of jaundice, and his spleen is not enlarged. Without the blood work the hematologist couldn't speculate on Nic's future diagnosis, but we did discuss what we will do if the tests are definitive for sickle cell disease, and at this point we would just continue to do what we have been doing, and start thinking about when he might start more intense medication. There is a medication in use right now in pediatric sickle cell treatment that looks very promising, but it also has some serious side effects, so it isn't something we would want to start until we were sure he had sickle cell. The other main treatment for sickle cell disease is a bone marrow transplant, and our hematologist said that there is a growing belief that children with sickle cell should get transplants while they are young, because by the time things progress with the disease it can be much more difficult/too late. However, Nic is not a good candidate for transplant because he doesn't have a sibling to donate... so it may not matter in his case at all (and certainly not right away anyways).

So, what it boils down to is that regardless of the outcome of the tests, we are currently doing everything for his health that we would be doing anyway and thus waiting a few more weeks is unfortunate, but it doesn't harm Nic at all. Mom's blood pressure is another story...

The other thing we discussed is what will happen if the blood work shows that his fetal hemoglobin has not dropped. If that is the case, the doctor will be pretty certain that Nic has sickle/HPFH but since the tests won't prove without a doubt that he does (because it would mean he has a genetic mutation they don't have a test for), we will continue to treat Nic with the standard sickle cell precautions (penicillin, ER visits for fever) just to be on the safe side, but do so thinking that it is simply precautionary and that he will have a relatively normal life.

Apparently there is some third condition that Nic might have (if it isn't HPFH), but they also don't have a test for that (ah, what a theme), but it would explain his funny hemoglobin and why he has hasn't had any issues thus far, and it would overall be a positive thing...but we didn't talk much about it since there were no blood results to talk about.

Now we wait some more. I expect that we will hear something either next Wednesday or the following Wednesday. It just depends on how busy the Mayo lab is this week. For now, I suppose we will be practicing waiting patiently while we continue to pray for Nic's health and a clear test result.

Tuesday, 7 February 2012

Blessings From a Curse

The nurse called with the preliminary results of Nic's blood work. We are still waiting to hear about the percentage of sickle cells in his blood vs. fetal hemoglobin (which is what we are most anxious to hear about, of course), but the good news is that he is not currently anemic. This means that no matter what the results of his test, whether they decided that he does has sickle cell disease (current diagnosis), or if they decide to re-diagnose his condition as sickle/HPFH, we won't need to make any immediate decisions regarding his health or course of treatment. We are thankful for this breathing room.

I've been reflecting on what I've learned in the past nine and a half months of waiting for this diagnosis. I can't believe that Nic has been home for almost a year, and I can't believe we have spent this long waiting for answers, especially when sickle cell is usually such a clear diagnosis. The wait has had its ups and downs. Accepting that the perfectly healthy-looking child we brought home had a serious disease was tough, but the most difficult period was when we (and the doctor) really believed they were going to un-diagnose him, and then they didn't. When we got the good news, I felt like Nic had been given his life back, and having that all taken away again was so hard.

I know that even with sickle cell Nic's prognosis is "good," or at least they expect it to be. But "good" for his type of sickle cell means maybe living 50 years, instead of 40. It means heading to the hospital only a few times per year, instead of every other month. I am grateful for that. But, the truth is I want him to live to be 80, not fifty. I don't want him going to the hospital at all. I don't want him to be in pain, or feel different from other kids (I have a feeling that my kids are going to feel different enough without added medical conditions), or to be unable to participate in normal activities. Most of all, I want him to live a full life, and I worry that sickle cell will hinder that. Unless, of course, I alter my definition of "full."

Here is my hope, my redefinition of "full": even if Nicolas' diagnosis is confirmed and not reversed, I believe that God can use this disease for His glory in Nic's life. I pray that Nic will see the beauty that God can weave from the pain that he will surely suffer and the sacrifices that he will surely make. For my part, I can already see some of what God is doing through the pain of Nic's diagnosis in the life of our family.

For starters, when we were having our homestudy done for Nic's adoption, one of the major questions was what special needs we would be open to. We included correctable special needs in our "open to" list, and we discussed certain physical special needs (most specifically HIV), but in the end we decided against it because we were unsure if we could handle the daily medicine regime, the increased doctor and specialist appointments, the hospital visits, and the stigma. While sickle cell is pretty much stigma-free, we have ended up doing every single other thing on that list, and have realized that we do have the resources to handle it. If we decide to adopt another child with physical special needs on the next go round, I believe it will be due largely to the experience that we have had with Nic, and the confidence that this has given us to take on that responsibility. What a gift that has been to us, and to our future family.

In a similar vein, Nic's diagnosis has forced me to further give up my (imagined) control of my kids' futures, or at least grip those futures a little less tightly than I had been (you may notice that God is continually working on my control issues). Accepting that Nic's life is probably not going to look "perfect" or how I might image it under the best of circumstances (and doing the same for Tommy) has been freeing. God worked it perfectly that the book my bible study did last fall emphasized similar themes about placing our children in God's hands. My responsibility is to raise a child who loves God and wants to conform their life to His will, and sickle cell does not stand in the way of that.

It has also been very eye-opening to learn about sickle cell disease. I knew a bit about it before...as in, what I remembered from biology class in high school. I never realized how serious of a diagnosis it was, or (sadly and unfairly) how little money has gone into research for alleviating symptoms and finding a cure because it is a disease that primarily affects people who aren't rich and who don't have special interest groups, loads of wealthy friends to hit up for donations, or time to spend rallying people to wear special bracelets and buy colored products. I am thankful that I am no longer as ignorant as I used to be.

This next blessing is a little more speculative, because something else may have prompted this if it weren't for the sickle cell, but I don't know if we would have Klug boy #3 without it. The thing that scared me most about getting pregnant again was the thought of having to wait months and months to learn whether or not the baby would be healthy. Then, I spent months and months waiting to find out if Nic would be healthy or not, and realized that it was possible to function under that stress. When we found out in July that we would be waiting ages to learn about Nic...well, I figured if you are going to wait to find out the fate of one child,you might as well wait on the fate of the second at the same time. And voila, enter baby Klug.

Blessing upon blessing upon blessing.

Tomorrow we go in and will hopefully be getting the results of Nic's blood work and a firm diagnosis. Please pray that we will be able to graciously accept whatever God is doing with Nic's life, whether it means that he will live with sickle cell disease or not. And pray that no matter the result, that we remember to cling to the blessings that this period of waiting and uncertainty has brought us. And yes, I'm deliberately posting this tonight, before we find out, so that I have a reminder in case I am feeling much less thankful tomorrow.

Sunday, 5 February 2012

The Birdhouse of Perpetual Paint

My boys aren't particularly "crafty." It may be a little early to tell with Nic, but thus far his interest in the "arts" has been minimal (music aside). Tommy enjoys doing a craft from time to time, but his patience with them is short-lived, and he almost never initiates craft-like activities. He will occasionally color or pull out the play dough, but honestly, he would rather play cars. And them some more cars. And then trains. And then construction.

However, there is one craft that manages to keep Tommy's interest, for reasons I do not understand. He has this little wooden birdhouse that he likes to paint, and then re-paint, and then paint again. I'm happy to let him do this until his paint runs dry. I would much rather store one wooden birdhouse than a collection of projects that he didn't spend much time on. Really, his love of re-painting is ideal.

Today I thought we might do a bit of finger painting, which I used to LOVE when I was Tommy's age. He hadn't tried it before. He thought it was fine, but soon grew bored and begged to paint his birdhouse instead. Nic was not a fan of finger painting. I think it might have been too messy for him (this is a child who loves napkins like no other). Maybe when he's older...

And as an added bonus, some pictures of our trip to the zoo yesterday. The weather has been so nice we decided to play hooky from our usual indoor activities and spend some time getting some fresh air. Below are some pictures of Tommy doctoring a Wolf at the children's zoo.