Saturday, 27 August 2011

Soccer Camp

Friday, 26 August 2011

Pizza Bagel Upgrade

I've noticed that quite a few of my blogging friends have been favoring their readers with lovely tutorials for making all kinds of delicious meals. I thought I should jump into the fray.

Now, if you are like me, you sometimes gaze longingly at the box of bagel bites in your grocer's freezer, but you will never actually buy them because you know deep in your heart that they are gross, that they were gross when you last ate them in college, and that you should never feed them to your children. Still, the siren song of the bagel bite beckons you because they look delicious in the pictures.

I have a solution that allows you to feel a little like you are eating a bagel bite, but far far less guilty. Also, it is way easier to make than regular pizza because you can skip making the dough, and it will heat up your house much less on humid summer nights (this is the real reason I devised these, also we had a bunch of bagels).

In order to make this truly high class, you need to start with premium ingredients.

First, you need a bagel with a little something extra. We went with Parmesan bagels.

Slice those in half, and spread them with a spaghetti sauce. You aren't allowed to use anything that comes out of a can. Jars only! It will also be more upscale if you choose a fancy sounding flavor. Like Basil.

Next, you have to use multiple cheeses. Two cheese or three cheese sounds like something you might order at a restaurant. Use mozzarella as a base, and then grate some fresh Parmesan and/or Pecorino Romano on top.

If you prefer cheese, then you're done! My kiddos like toppings, so they got diced green bell pepper. Jeff likes meat, so he got diced salami, prosciutto, and capicola (can you tell I bought an Italian deli meat trio that week?), and I went hog wild- meat, peppers and onions.

Bake at 350 for 15 minutes or until cheese bubbles.
I know, it would look so much more delicious if I could take a decent picture...

Tuesday, 23 August 2011


Three is quite an age. I could seriously do without the tantrums that come out of no where, the stubbornness, and the intentional disobedience (and the many many timeouts that accompany it). I will be happy when my children's brains start functioning properly, which I think happens when they turn twenty-five. That said, it is also so much fun to be able to finally communicate really well, to watch Tommy learn so many things every day, and to listen to the crazy things he comes up with.

J: Tommy, you're rad.
T: No Daddy! I'm not red, I'm brown. (pause) I'm chocolate!

T: Mum, I have a new name: Mister Corn.
(Next day). Mum's name is Mister Lady Corn, and I'm Mister Corn.

After hearing us call Nicolas a "Strawberry Piggy," because that child can eat his weight in strawberries, Tommy began creating similar labels for himself, including:
"Strawberry Walrus," "Cherrio Dolphin," and "Pizza Tiger."

A phone book was tossed on our doorstep, and Tommy declared it a "package in the mail" and opened it. He announced that he had received "The Storybook of God." He then proceeded to "read" me the highly blasphemous tales found in said story book (we might start calling it the second gospel of Thomas).

The first story was "Jesus yelled at the people, 'Don't take my pizza!'" Every story after that was about Jesus getting trouble for splashing people in the eyes, pouring water out of his bath, and other things that Tommy has actually been punished for this week. Of course I repeatedly explained that Jesus never did bad things, something that we have discussed before, but this truth has yet to be reflected in the stories Tommy reads from the phone book. This leads me to wonder, Susan De La Paz, what on earth are you teaching my child in Sunday School?

Tommy's love for Robin Hood (with the Foxes, not Kevin Costner), has led to a number of hilarious out of context or misinterpreted moments. I will limit myself to my favorite:

He got very mad at Nicolas one day and yelled, "I sentence you to sudden, instant, and even immediate DESK!"

(for those not familiar with the movie, this is an imitation of Prince John using the line to sentence Robin Hood to death, a word that we have yet to explain). Tommy heard me repeat the story to a friend, and realized from what I was saying that he got the line wrong. Now he sentence Nicolas to "immediate DECK."

Tommy has started soccer lessons or whatever you call it. I just signed him up in the hopes that they would make him run laps for an hour while kicking a soccer ball because he has more energy than can be easily expended in our small apartment and yard. Soccer was the only sport open for kids his age. He hasn't exactly taken to it, mostly because he wants to hold the ball. At the second lesson, which was held on a basketball court in a gym due to rain, the coach announced they would be having a soccer game/ Tommy responded by asking if he could just shoot some baskets. The next session they were back at the park, and Tommy spied some kids playing football, and pointed at them and announced very loudly that he would rather play "that game." I am thankful that camp is almost over.

Saturday, 20 August 2011

Heavy Hearts

It's been quite a week for bad news - before I explain, it's nothing to do with Nicolas' health or anything within our immediate family (so don't worry mom). We have some friends that could really use your prayers, so I'm sharing.

When we were in DRC, we stayed with a couple, Joel and Kristie, who were basically the champions of Congo. They had been there so long they should have purchased real estate and started to grow their own food. Since they had plenty to tales to tell, as we sat around killing time (and by time, I mean hours and hours and hours), we got to hear stories of what they had experienced. One of the names that I heard over and over again was Reagan. Reagan is the mother to Theo, and she is apparently quite cool and tons of fun (and was also wickedly sick at one point). In addition, Reagan was the reason that I had bottle liners and nipples (she brought and left extra, and I didn't bring enough), dish soap, and probably quite a few other things that I got from the community stash. Anyhow, she and Theo got home before we left, so our paths never crossed directly.

A few months after they got home, Theo got pretty sick and they thought he had an infection. The infection turned out to be leukemia, and not just any leukemia, a very rare genetic variation that is particularly hard to cure. He went through chemo, and they were told he was in remission. They went in for the second round of chemo this week, and found out that the test that put him in the remission category was inaccurate. He was not in remission at all, and he would need a transplant. Theo has no known biological siblings to give him bone marrow. His odds of being matched on the bone marrow registry are one in a million. Apparently there is the possibility of curing him using cord blood, and finding a match for that should be a little easier. Either way, this is going to be a long hard battle for his family. Please take a minute to pray that a match of some sort will be found. Pray for little Theo, who barely had time to adjust to his new home before he had to move into the hospital and spend day after day being poked, prodded, and pumped full of medication. Pray for his mom and dad and older siblings and they soldier on through this difficult time of having one parent living in the hospital and one at home. If you have a minute, you might also consider contacting the national bone marrow registry and signing up to be a donor if you haven't already become one. It's easy - just a cheek swab. You probably won't be Theo's match (unless you happen to be of African descent, and if so please please sign up because minorities are very underrepresented on the registry), but you may be someone else's one in a million.

The other family I would love for you to lift up in prayer is the Vargas family. We met Susan and Lineu Vargas when we lived in Evanston. They were members of the young adults group that we joined shortly after we began attending First Pres. They were married right before we met them, so I always knew (and thought of them) as a unit - and they were one of those couples that are so obviously right for each other. Lineu was sincerely charming and kind, and his love for Susan was so evident in the way he treated her and talked about her, and I think the way a man treats his wife can tell you a great deal about his character. Lineu was a man of great character and of strong faith.

This week Lineu was killed in a car accident, along with his step-father and uncle. While I am so thankful to know that Lineu is hanging out with Jesus, I cannot even begin to comprehend what Susan now faces as she contemplates life without her husband and goes through the process of mourning his loss. The day we found out that Lineu had died was also the day that we found out that Susan is pregnant with their first child. She is in her first trimester. It adds something to our sadness to know that there is a child who will never know his or her wonderful father, and to think of what an amazing dad Lineu would have been, but what a joy that part of him will continue on in this tiny being he helped to create. Susan has traveled to be with Lineu's family (he was with them doing business when he died). Lineu's mother had to bury both her son and her husband on the same day (and this is the second husband she has had to mourn, as Lineu's father also died suddenly). Lineu's uncle leaves behind a grieving wife and son. Lineu also has a brother who now must shoulder a great deal of responsibility in the wake of so much loss. Please cover this family in prayer. They have lost so much so quickly. Susan and her baby are especially heavy on my heart. Obviously I am more sensitive than most to all of the things that might go wrong during pregnancy, so I am so concerned for the health and safety of the child in her womb. Thus, I beseech you to take a moment (or many moments) and lift them up in prayer.

Thursday, 18 August 2011

Train Spotting

We have had perfect weather this week. Seriously, if we had a real beach (sand at the edge of a lake is not a real beach) I would be right at home.

We've been trying to take advantage of the lovely temperatures and low humidity by getting outside as much as possible, but since we don't have a community pool, and I don't like trekking to the zoo everyday I've had to be creative. Thus, we found ourselves packing a picnic lunch, loading up the stroller (my double jogger is rocking my world), and heading to the train station to eat and watch the trains go by. The boys had loads of fun eating lunch on the benches by the fountain. I was happy that they got to see a handful of trains, since most of the trains on our tracks are commuter, and noon isn't prime time for commuting. After over an hour of free entertainment, the boys were still not ready to leave even though nap time was fast approaching. Thus I offered a return trip at some point in the future...and Tommy decided that the future should be very very soon. So, we went back for dinner.

Trip One:

Here, Nic. Have some of this clementine.

You got room for more in there?

Hold still. I'm trying to give you more clementine.

A fount of silliness

Good ol' BNSF

Tommy's train dance

Trip Two

Waiting for a train with Daddy

Waiting for a train with Mum

Tasty corn

Really tasty corn

A "people" train


Wednesday, 17 August 2011

Check-Ups and Check-Ins

This past week Nic had both his one year check-up and his three month social worker visit. I'm pretty sure we "passed" both.

Nic continues to be as healthy as a horse with a possible case of sickle cell disease. He is growing, and is at average weight and above average height. He has taken his first steps, and is keeping me on my toes with his shenanigans. We found a very nice pressure mounted baby gate this weekend at an awesome discount (love us some garage sales) and installed it in front of the kitchen. Now I can rest easy that Nicolas isn't pulling every single can out of our cupboard...his former favorite activity. He still has access to our book cases, which he rearranges on a regular basis, so he still has outlets for fun and mess-making. Why won't he just play with his toys?

The social worker came and asked her questions, and didn't seem to find anything wrong, so I'm assuming we are fine on that count. Nic's adoption will be finalizing next month, and she assured me that she sent in her report so everything that we are in charge of for that event is completed. I am very excited to receive that ruling. Also, she stayed only in one room, which was awesome because I hadn't had time to clean the kitchen and our bedroom is messy...but she doesn't know that. Besides, fit parents can still have messy houses, right?

Our last bit of "news" - Nic's hematologist got back to us about the "conference" they had on Nic's case. Everyone agrees that Nic either has sickle/HPFH non-deletional or sickle cell disease. So definitive. That first bit of information means that they have ruled out the Ghanaian variant and those related to it, but that they still think HPFH is possible because there are rare types caused by point mutations that are difficult-to-impossible to detect with DNA tests. We are at the same place as before - they will test in six months and maybe decide, maybe not. The way the wind is blowing I'm guessing not...but I could be wrong. The good news is that everyone believes that if he has sickle cell disease that it will likely be a more mild version, simply because he has not had any issues thus far and continues to enjoy such good health. People who retain/maintain higher levels of HPFH who have SCD tend to have fewer problems than those with low levels. They are trying to interest a researcher at a University in his case, to see if someone will be willing to spend more time/money looking at his DNA for the purposes of research. We are praying that someone takes an interest in his case so that we might be able to have definitive answers.

I've been canning again this week - this time green bell pepper jelly. It looks very ugly because I am grossed out by the idea of adding food coloring, but it tastes so yummy - sweet and peppery without overwhelming spice. It set a bit harder than I wanted it to. Anyone else using the new Ball bulk fruit pectin and feel like you may be adding too much based on the canister instructions? Or maybe this is just one hard jelly. It spreads fine, so I'm not that worried about it.

Sunday, 14 August 2011

The "What If" Moments

A few nights ago we had a perfect summer evening. Low humidity, warm enough outside to be comfortable in shorts but still cool enough that we weren't dripping sweat, a beautiful sunset, and Tommy riding his big wheel up and down our street like a mad man and having a good ol' time. I chased him back and forth, ensuring that he kept out of the parking lots that our sidewalk runs into, and that he stayed far back from the street. Inside, Jeff and Nic were rocking out, as is their custom.

When Tommy and I finally parked the trike and came in, we found the two of them dancing, Jeff holding Nic, both of them with one arm outstretched, hands clasped and spinning slowly in a circle. Since nothing beats a family dance party, Tommy and I joined in. Immediately Nicolas began to laugh like crazy, and Tommy joined in and the look of sheer delight and unadulterated joy on both their faces made my heart swell. Watching them love each other, love being in our family, and love living their lives was so beautiful.

As I danced with them, held them, squeezed them, smothered them with kisses, the joy of the moment was interrupted by small, sad thought: what if?

What if my precious boys still lived in their respective orphanages?

What if their countries hadn't been open to Americans adopting?

What if we hadn't been open to adopting internationally? Or adopting a child with a different color skin than ours?

What if the children I now cherish lived in an institution, had access to minimal medical care, were malnourished, drank dirty water, and constantly had to fight for their needs to be met...still?

What if they never experienced the daily love, hugs, kisses and affirmation that come with being part of a family?

Both of our kids have come such a long way, the reality of their past rarely creeps in. It's easier to forget the sad truth about the places that they came from- it's easier to forget that they suffered physical and emotional deprivations, and it's easier to forget the millions of children who continue to languish in institutions with no family dance parties in their future because the "what ifs" in their lives haven't worked out.

Because of governments unable or unwilling to devise systems for adoption, either domestic or international.

Because of harsh economic circumstances.

Because of people who are afraid to take a chance on someone else's child.

In those "what if" moments, when I remember both my children's pasts and the bleak future of so many others, I am so thankful that God orchestrated our lives such that we were open to adoption after Leah died, and that we were encouraged to pursue this path at the time that we did. I am also thankful that I have seen the dirty, dark, desperate places where some children are forced to live, even though at times it it a burden to know and to have seen. Hard things are a blessing when they change us to be more like Christ. The images of those children seared on our hearts motivate us to live differently, to love broadly, and to give generously. That is why I'm grateful for the interruption of our perfect moments with "what if?"

Because what if we didn't remember the suffering of others? What if we did not act on the behalf of millions of orphans worldwide? What if we chose to forget?

Thursday, 11 August 2011

Zucchini Week

I love the abundance of summer.

This week we picked up a big bag of zucchini at church, so I've been canning, freezing, cooking, and baking with zucchini. The amount of zucchini I brought home was significantly less than last week's peach bonanza (although I could go for another half bushel of peaches right about now), so it was much easier and less time consuming.

The final count for the bag of zucchini:

4 small jars of summer squash pickles canned.
4 bags of blanched chopped zucchini bagged for future stir-frying
2 loaves of yummy pumpkin zucchini bread baked and wrapped in the freezer

Recipe for the bread here. I subbed in chocolate chips for the walnuts. Also, if you are going to cook large loaves turn the oven down to 325 or they will brown too fast, as you can see in the picture.

The Zucchini went fast - I have a few more canning recipes that I would like to try so maybe I'll find some more as the summer goes on. I would also be willing to make and eat a whole bunch of that chocolate chip zucchini pumpkin bread!

Wednesday, 10 August 2011

Fun In the Sun

It's been a hot hot hot summer. This pic was taken on one of those days when it wasn't too hot to go outside:

This was taken on Jeff's make-up Father's Day. To celebrate he got to go swimming in a pool that is at least 1/4 pee, grass, and bugs (we have to fill it up early and let the water set a while to warm up because someone doesn't like cold water). What a great dad.

Tuesday, 9 August 2011

Where's Lightning McQueen?

Tommy and I went for his first trip to the movies on Saturday morning. Tommy has been obsessed with Pixar's Cars for quite a while now, and so when we saw that Cars 2 would be coming out this Summer we figured that would be a good first movie for Tommy to see in a theater. Amy and I were disappointed when the movie got pretty poor reviews, but we figured that seeing the most mediocre Pixar movie was probably pretty far from the worst movie-going experience we would have to endure for the sake of our children. Having now seen Cars 2 I can confirm that it is indeed not very good, but it is also not nearly as bad as a number of movies I have sat though for the benefit of my wife.

As for the rest of the movie-going experience, I have to admit that I didn't think too much ahead of time about things that might complicate taking a three-year-old to his first movie (the scary folding seats, the dark theater, when is the movie going to start?, keeping quiet, bathroom breaks, seeing other kids eating popcorn and candy at 10:30 in the morning, etc). It wasn't even until I watched the exit of the first kid who had to pee that I realized that I might have wanted to take Tommy to the bathroom before the movie started, you know, maybe sometime during the approximately 45 minutes of commercials and previews which apparently air before all movies these days (Amy and I don't go to a lot of movies...). Fortunately, my son is awesome and has an iron bladder when seeing/not seeing any amount of Lightning McQueen is at stake. Actually I couldn't even talk Tommy into going potty after the movie, but I still think he would have held it willingly if he'd had to go.

Backing up a bit, we got to the theater about 15 minutes before showtime and stood in line briefly with a few other parents and children - some seeing Cars, some Winnie the Pooh, and some Smurfs, which thankfully Tommy hasn't heard of. I could tell Tommy was a little overwhelmed by all the lights and pictures and everything else in the lobby. My goal was to make it to our theater, which was at the end of the corridor, without having Tommy ask me anything about Final Destination 5. On a similar note, there are seriously a lot of posters with guns on the way to the G-rated fare.

Once safely inside theater #4 I quickly encountered complication #1: the seats. Actually, we ran into "when is the movie going to start?" first - before we even made it through the entrance, as soon as the screen was partially in view, Tommy wanted to know "where's Lightning McQueen?" He's coming - we just have to wait a few minutes so more people have time to get here. Variations on that theme were repeated often for the next 20-30 minutes, each sounding less convincing than the last - even to me.

The seat issue was a bit more of a problem than the wait. I thought that if I made the spring folding action look fun we would be ok, but, well, not so much. It wasn't hard to get Tommy to try it out, but as soon as he sat down and scooted back, the seat started to fold up, and he was not cool with that. I could hold it down with my leg, but I could tell that Tommy didn't really trust that he wasn't going to fall, so around the time the actual movie started Tommy was looking for another solution. Fortunately, I have a lap. Problem solved.

The dark theater wasn't a problem - I told Tommy that's how we would know when Cars was finally going to start. I did have brief scare regarding the "seeing other kids eating popcorn and candy" issue, as one kid came in and walked past us with his mom and huge thing of popcorn. Tommy: "I want some popcorn!" Me: "No Tommy, you just ate breakfast. We don't need any popcorn." But for a fraction of a second while I was saying that, I thought to myself, wait, should I let him have some popcorn at his first movie? Then I remembered of course that, no, it was a ten twenty AM showing. Thankfully, Tommy seemed to forget about popcorn as soon as it was out of view. And the world kept spinning.

Ultimately, I think Tommy had a really good time. I know he enjoyed the movie since he asked for more as soon as it ended, and he insisted that we stay and watch the entire end credits (which weren't interesting). Seriously, we were in there until the lights came up and the dude with the broom had already started sweeping. And I know I had a good time hanging out with my boy. And now, here are some pictures:

Are we excited yet?

Almost there... outside theater #4

There were a lot of previews

Monday, 8 August 2011

Millions of Peaches

Went into the Country, got a lot of peaches.

A half bushel to be precise.

Here's something you should know about me for this story to make any sense: I am completely incompetent in areas related to spatial functioning. I'm that person who picks out a gallon sized tupperware to hold a cup of food, or worse, a cup sized tupperware to hold a gallon of food. I can't pack a bag, or a trunk, or organize a closet. I can't visualize what fits where - ever. Thankfully God gave me Jeff who is amazing at those sorts of things, and he balances me out and prevents me from attempting to rearrange the furniture in ways that can't possibly work.

While we were in Indiana we ate the most delicious, juicy, sweet peaches. All the peaches I've bought this year have been mealy or gone bad instead of ripened (grrr), so I was quite curious as to where the fantastic peaches came from. Lo and behold, the market that sold them was on the very road we were taking to drive home.

We stopped off and I ran out to buy the peaches, only to return to the car to tell Jeff that he and the boys should come in. The market was very cute - they had all kinds of fun things for sale - jams, fruit butters, bread mixes, hard candies by the pound, a wide variety of farm fresh fruits and vegetables, and little bags of popcorn for the kids to sample.

I found the section with peaches in the back. There were a few types, some in bins, some in baskets ready for sale, some in large buckets. Now, I knew that I wanted some to eat and some to use for jam. The baskets just didn't look big enough, so I went for one of the buckets. My warning should have been Jeff commenting "Don't you think that's a lot of peaches? Do you think that will fit in our trunk?" It did. Barely (we had the pack in play back there as well as a bag and a back pack and we drive a small car). I also picked up a giant cantaloupe, sweet corn, and bell peppers. I wanted cider too, but it had to be refrigerated.

On Monday I decided that I should attack my half bushel of peaches.

This is what it looked like when I started:

First, I picked out some ripe peaches for eating and some that would be ripe by the end of the week, so that we would have plenty fresh. Then I made some jam.

This is what it looked like after that:

At that point I realized I would need to be a lot more creative to find uses for my peaches. Over the course of the week I made another batch of jam, canned six pints of peach slices, did a batch of peach butter (which has nothing to do with actual butter, it's just a smooth, thick fruit spread - like apple butter), and made peach syrup (recipe here). Then I put the rest of the peaches in the "eat fresh" pile, because I was done.

The fruit of my labor:

Then, because the canner was already out and I had ripe tomatoes I made a round of salsa. It was my first attempt and it was not terrible, but it was very tomato heavy and thus too sweet and not spicy enough by half. Next time I will be trying a different recipe. My main canning goal is to make enough jam this summer to not have to purchase any during the winter, because I can use low/no sugar fruit pectin and make jam that is much healthier than what I will pay for at the store. Certain members of my family eat PB&J at least five days a week, so jam goes quick around here. Unfortunately I haven't had much luck finding good, ripe, and inexpensive fruit this summer, so the peaches were a nice breakthrough. My other goal is to make and preserve some great salsa from the tomatoes, jalapenos, habaneros, and bell peppers that I am growing in my garden. I've struck out on my first try, but am optimistic that my next batch of salsa could be better.

Saturday, 6 August 2011

Nic Turns One

How is it that my baby is one already? I mean, besides the small matter of us missing out on the first seven and a half months of his life?

Nicolas has gotten so big, and his little personality is starting to shine through. He loves imitating his Daddy, and has figured out little noises and gestures that make us laugh, and likes to put on little shows in from his booster seat. His old nick-name "Big Hands" continues to apply, as he spends much of the day grabbing everything in sight and trying to pull it down/out of place (also, he has big hands and feet compared to the rest of his body). He adores music and loves to wave his arms or dance when we listen to it. He eats very well, in fact, I have trouble keeping enough food on his tray because he gobbles whatever I give him right up.

We had a birthday cake for him at the Congo party. Everyone sang "Happy Birthday" and Nic (with a possible assist from Dad) blew out his candle. There can be no doubt that Nicolas enjoys cake. He ate it all, and wanted more. It was probably the best "store bought" cake I have ever eaten. I'm not an icing person at all- but the icing on this cake was so good that I would have eaten in plain. It was great to celebrate among friends, and it was especially neat to have the Woods family and Craig family there with us.

On Sunday, Nic's actual birthday, we spent the morning and early afternoon at the ongoing party, but had to spend the rest of the day driving home. We stopped at Cracker Barrel so that Nicolas could have a very cheesy midwestern/southern birthday dinner. He enjoyed his dinner, and was crazy about the ice cream that the waitress brought him as a birthday treat. Enjoy the sugar while you can, my child, because it will be a long time before you see this much of it again!

Wednesday, 3 August 2011

Clear As Mud

Summary for those who don't want to wade through the long explanation:

Nicolas does not have Hereditary Persistent Fetal Hemoglobin/Sickle Cell as we had hoped. However, the hematologist still thinks there is a good chance that he does not have sickle cell disease. After all of the tests they did, including a DNA test, they have no idea what Nicolas has, and we will likely never know (unless they decide he has sickle cell disease).

The long explanation:

The earliest test results that we got back indicated that Nicolas likely had HPFH/Sickle Cell, but the further testing that they did to be absolutely sure did not confirm it. The good folks up at Mayo ended up looking at Nic's DNA to examine the genes that control making hemoglobin. People with regular HPFH have a specific part of their genes missing, and Nicolas had that part, which means he does not have the usual HPFH. Now, you may be asking, as I did, since there are two genes to control the formation of hemoglobin, and sickle cell disease requires both genes have the mutation for sickle cells, why don't they check and see if he has sickle cell mutations on both genes? Apparently DNA is a little more complicated that those neat double helix-illustrations make it look. According to the hematologist, it is all too muddled up to determine if both genes have sickle cell mutations. There are no more tests they can run. There is the possibility of sending Nic's blood to a researcher who specializes in sequencing hemoglobin genes, but the doctor said that tends to be worthless because you typically are not allowed to see the results of the tests they run if they are using it for research.

The group of hematologists that our Dr works with are having a meeting (actually, the Dr called it a conference) on Nicolas' case next Tuesday morning at U of C. I sort of wish I could go. Anyhow, perhaps someone there will have an idea of what to do next, but I got the sense that the whole point of the meeting is to marvel at the oddity of Nic's results, and that the Dr is not expecting any new answers. That said, we are praying that someone will have a flash of genius and come up with something.

So here is where this non-news leaves us:

Apparently, there are other mutations of HPFH that Nicolas might have, they can be difficult to find with DNA testing. It is possible that Nicolas has one of these. His "good" red blood cells closely resemble those of someone with HPFH in their size, uniform distribution throughout his blood, and in their apparent ability to prevent sickling (both because Nicolas has been asymptomatic thus far and because in his blood smears they haven't found clumped up sickle cells - highly unusual for a child with sickle cell disease). In addition, his spleen remains normal and healthy (also unusual for his age if he had SCD). The Hemotologist believes that it is most likely that Nicolas has some sort of HPFH, but we may never know a type or have a test result to prove it (it is possible he has a mutation/type that hasn't been documented yet).

There is also the possibility that Nicolas has sickle cell disease with some unknown factor that has kept his fetal hemoglobin way higher than the norm. Most people with sickle cell disease have higher levels of fetal hemoglobin than the rest of the population, but the high end of that spectrum is 20% fetal hemoglobin, and it is frequently not evenly distributed in the bloodstream. Nicolas has 38% fetal hemoglobin, evenly distributed. There are a few things that can cause high retention of fetal hemoglobin, but we would need to know more about Nic's parents and his first mother's pregnancy to determine if these could even be a factor. That information is not available.

Because sickle cell disease is still a possibility we will continue to treat Nicolas as if he has it. He will stay on penicillin, we will continue to go to the ER if he has a fever of 101 or higher (we were told that if the fever is less than 103 and everything else is normal he can just get some antibiotics and go home instead of checking into the hostpital- woohoo!). He will continue his special vaccination series. In six months we will go back and do more blood tests (no DNA this time though), and if his level of fetal hemoglobin remains more or less the same and everything else continues to look good then his statues will be reevaluated and we may begin to treat him as though he has sickle cell trait as long as he does not have a sickle crisis before then or show any signs of SCD. Or, you know, we may wait another six months, run a few more tests, etc, etc.

As you all know, I suspected that something was not right with Nic's test results when we had to come in for the appointment. Thus it was not at all surprising when the hematologist tried to "gently" break the bad news that he has no idea what Nicolas has, and that he may never know. I know at some point I just started laughing at the absurdity of it all. Seriously, THIS IS ABSURD. Hopefully the Dr doesn't think I'm hysterical. I know he thinks Jeff and I have the retention of eight year old's because he explained sickle cell disease to us, again, and he couldn't have explained it in a more elementary way without using a flannel board. If our relationship with our doctor continues (and we hope it will because we like him, respect him, and trust him) Jeff and I are trying to figure out a way to politely explain to him that while we obviously don't know anywhere near as much as he does about any of this, we are fairly well-read on the subject and don't need all this repetition coupled with overly simple explanations. It wastes valuable time, it is boring, and it irritates us. These appointments are billed at over $400 an hour- I don't want to spend Blue Cross' money on nonsense. Do you know how much all this sickle cell stuff is costing them already? Nic's ER/hospital visit was six grand. OUCH. Now would probably be a good time to mention that we are so thankful that Jeff has a job that offers a group plan, even if we do sometimes have to harass our medical group to honor the terms of the plan and pay our bills.

Anyhow, we are happy that we didn't get terrible news, although we would have preferred not to have to spend another six months in limbo. We are thankful we don't have to wait a year for more tests, which is what would usually be suggested, except our hematologist feels we should bend the rules because he is "severely curious" to see how the next round of tests comes out, and thought we would be as well (can you say understatement?). Approaching this round of waiting feels easier, because our hematologist has "a good feeling" about Nic's case, and since we've waited before we know what to expect. We love Nic no matter how crazy his DNA is, and we trust that God will sustain us once again as we watch and wait for answers about Nic's health.

Tuesday, 2 August 2011

Congo Party!

This weekend we had an amazing opportunity to spend some time with a few of the families we traveled with and some other OFA families. The timing couldn't have been better. For one, it was Nic's birthday over the weekend, and two, we really needed a break from all of the waiting and wondering about Nic's medical issues. God provided us with the opportunity to be refreshed and to relax at just the right moment.

The party took place in Southern Indiana, in fact, had we gone much further we would have been in Kentucky. The family who hosted was so gracious and had a beautiful home that was perfect for the get together- a wooded, secluded lot with a pool, a play house, a zip line, and a tree swing - everything the kids could want! There was also good food and great conversation for the adults.

In total I think there were seven families, and twelve kids adopted from DRC (and more adopted elsewhere). It was a great experience for Nicolas, not that he can really remember or appreciate it, but I think he liked seeing his buddies from Congo. Tommy struggled a bit. He has been having a hard time lately with abandonment issues, (not related to his adoption directly); he is very very concerned that Jeff, Nicolas, and I are going to leave him. He also continues to have trouble with accepting Nicolas, and we had a few major setbacks on this front last week. Add that to being in the largest group of African kids he's seen since the orphanage, and he clearly was having a hard time discerning his place in the group, and acted out quite a bit. By the end of the weekend he became much more comfortable and was rather sorry to leave (and is already asking to go back).

I'm wanting to go back too. It was so so wonderful for us to catch up with our friends and meet more families that we have this shared experience with. I loved seeing how much the other kids we traveled with or visited while in Congo have grown. All of the children look so healthy, plump, happy, and best of all, scabies-free!

The kids enjoying lunch together

Jeff and Tommy

Nic's pruney little toes after LOTS of swimming

Cuddling and watching a movie

Twins! ;-)


More swinging

Jojo (above) and his "twin" Manny (below).

Love, love, love these boys.