Chef Charlie

Last month the St. Louis metabolic clinic put together a PKU cooking class. Keith and I had been to a couple in previous years but this was the first time for Charlie. He was super excited. 

The class was partially sponsored by BioMarin, a pharmaceutical company specializing in "orphan" drugs for rare disorders. They make the drug Kuvan which is written on all of the aprons. While we ate we listened to a presentation by an adult with PKU. It was a treat to listen to a successful adult with PKU. Her story and the stories of other PKU adults leading "normal" lives while taking complete responsibility of their diet, inspires me to help Charlie become like that. So when he leaned over to me near the end of her presentation and whispered that he wants to be like her when he grows up, it made my heart smile.

 Chef Kevin taught the class. Not only is he a professional chef, but he is also the father of a son with PKU so he totally understands the lifestyle. Keith and I have gone to ones in the past with chefs that don't have a personal connection to PKU. They were still good, but it really is great when the chef has first hand knowledge of cooking for the restricted diet, having to modify plans on the fly depending on what else has been eaten that day, how to add flavor without adding more phe, etc.

 There were several different recipes to make so we split into groups with each group working on one recipe. Later we would eat and get the printed recipes for all of them. Charlie and I were in the team that made Cilantro Lime Riced Cauliflower.

 Keith was in the Bananas Foster group.

 Keith was pretty excited about that.

It was served over low-phe coconut ice cream. Mmmmm. You are all invited for dessert anytime. Keith would love an excuse to make fire.

On the way home Charlie was going through his goodie bag and reading everything in there that had words. (He will read almost anything these days.) He fell asleep while reading the fine print on the Kuvan information. :)

A Merry Merrill Thanksgiving

For Thanksgiving the entire Merrill clan got together. This was a pretty big deal since that hasn't happened for almost 5 years and it was the first time ever that Granny B and Grandpa Joe have been in the same room with all of their current grand kids. It was pretty great.

Granny B brought little paper turkey kits for the kids to make. They were pretty excited about it.

Katelyn helping her sister Brianna.

Things were going pretty smooth with Thanksgiving food prep, especially considering Granny B can't have gluten and Charlie's PKU. Then while the last minute preparations were happening, I broke down in tears as I was dishing up Charlie's plate. (It can be really hard to have a positive attitude about PKU, where it is not only a matter of what he can eat, but also how much, on food-centered holidays. I will just leave it at that.) So I am in tears at the counter while weighing out Charlie's food, which brought Jenae, Bonnie and Keith to my side offering emotional support and ideas for me. (One of which was from Jenae and it was genius. I weighed out the max he could have, put half of it on his plate, spread around so it looked like more, and saved the other half for when he asked for seconds. Pure inspiration. I don't know why I hadn't thought of it earlier.) Anyway, I am crying, Bonnie and the others get distracted from their tasks, and in the middle of it all the smoke alarm starts going off. Before my little breakdown Bonnie had been watching the candied yams in the oven which were supposed to in there just long enough to brown the marshmallows on top. Well when she saw me crying she forgot about those yams and the marshmallows caught on fire. You should have seen the flames. Strangely enough it became the comic relief we needed and after the flames were put out we all started laughing while trying to get the smoke alarm off.

We just scrapped the black marshmallows off, put new ones on and tried again. No flames this time.
Thanksgiving dinner was wonderful, it was really nice to be with family around the table, and Charlie loved that he got seconds like most others.

You can't get the entire family together and not have family pictures taken, so the day after Thanksgiving that is just what we did. We kept it low key and had them taken in Paul and Jenae's big backyard. It is surrounded by lovely evergreen trees and a cute wooden fence so it worked well. Paul had a broken back, Jenae had a badly sprained ankle that had only been taken out of a boot the week before, so we weren't really up to trekking off to some fancy location. As a bonus, since it was cold the kids could warm up in the house when they weren't needed. Which is what Charlie and Tanner are doing.

Jane found crazy eyes while watching a magic show preformed by the talented Merrill Magicians: Tanner and Trevor.

Keith and I got new bikes for Christmas but we couldn't wait until Christmas to play with them. Of course. So we took them to Dayton with us so we could take them for their first real ride minus kiddos. It made me happy. :) I haven't ridden a bike in quite awhile. One major reason being that having a seizure while riding a bike would most likely end badly. And in case you were wondering, Shawn and Keith bought each other the same cycling jacket two Christmas's ago. Twinners!

Saturday we went to this really fun park in the woods. I handed my phone to Shawn at one point and it ended up with Shawn selfies on it.

 

 He is single, ladies.

Oh yeah.

While at the park we thought we would take another K2 family picture. Ya know, just for kicks.

Charlie was squirmy and being silly.

Then he was making faces and Jane was slipping.

This is the best one. Not bad.


 The purpose wasn't to have a photo shoot anyway, it was to get outside and have some fun.
Jane still mentions how she didn't like it when Charlie was pretended to be a scary spider at the park.

This guy came with a pretty great family.

Saying Good-bye to North Carolina

When I first came to North Carolina I had a lot of worries: no "real" mountains or rock climbing or backpacking, about as far away from family as we could get while still being in the country, crazy hot and humid in the summer, didn't know anyone, etc. So much has changed within those three short years. Although no mountains appeared out of nowhere and I never went rock climbing, Keith and I found things that we really enjoyed doing: walking along the beach in the morning calm, walks and bike rides around Lake Johnson, the amazing farmer's market, uncountable waterfalls in the hills, and most of all some treasured friendships. In the end it was really hard to say good-bye. (Well except for the crazy humidity).

 

Last visit to the metabolic clinic.

One of the toughest good-byes (at least for me) was our last visit to Charlie's metabolic clinic. They have taken such good care of Charlie and us. Julie, Charlie's dietician, is wonderful beyond words. She was always available to answer questions, help when we had trouble getting formula, or had concerns and gave great advice about things we hadn't even thought of. Leaving to a new place away from them was hard. The one comforting things is that all of our dieticians we have ever had have been great. Personally I think that all potential dieticians have to go through some sort of "niceness" test. So I am not too worried about who our new dietician will be, but it is always, always, hard to say good-bye to people that are so much more than a doctor to you.

On a similar note (although unfortunately I do not have a picture) I almost cried saying good-bye to Dr. Radtke who has been my neurologist through out my entire seizure ordeal. I was walking out of the room where we had been visiting when I suddenly realized that this was the last time I would ever see him. I am kind of glad that I hadn't had that realization earlier because I don't know if I would have been able to make it through that appointment. He would answer emails that we would frantically send any day of the week asking what we should do now when some medication wasn't working or I was having major side effects, etc. After that final visit he gave me a hug and softly and lovingly whispered "I hope all goes well for you. You have been through a lot." The way he expressed it with genuine care almost brought me to tears.

All the people at Duke took such great care of me; Dr. Friedman my brain surgeon, Eve my midwife, Dr. Peters my neuro-oncologist, Dr. Radtke, and all of the many therapists and nurses that helped me along my difficult path. It made me feel sad and vulnerable to leave all of them behind.

Another thing we miss is the state farmer's market. It was like no other farmer's market I have ever seen; huge, open year long, the variety was amazing and fun local fare like okra, pickled everything (really, everything), etc. Not to mention the most beautiful and cheapest ceramic pots ever. You would have to see it to believe it. Unfortunately we don't live there anymore so I won't be able to show you.

"Our" Lake Johnson is another one. Oh how I miss that place! I took walks there almost everyday. It was my sanity keeper especially while I couldn't drive. Keith and I went boating there on a couple dates. Charlie played there and that is where Keith taught him to skip rocks on the water. It is the place where I felt the most "normal" after my surgery. It was relaxing and I always felt peaceful there. My thoughts were clearer, I felt more confidence in facing the day and my body felt stronger after walking/running there. But most of all I miss walking with my friends there. I miss the conversations we had and watching our kids play together. It was terribly hard to take that last walk around it, knowing that I would never do it again and that there would be nothing even comparable to it in Fargo.


Of course the friends we made were the hardest to leave. I couldn't say enough about our dear friends so I won't try, except to say that they were the jewels of our life there, as true friends always are.

Johannah, for instance, gave me the privilege of watching her son Jack who is the same age as Charlie. They quickly become great friends and it was truly a delight to watch them play together. I don't think Charlie understood what was happening when we said good-bye to them for the last time, but I did and it broke my heart to know that Charlie would never see his dear friend again.

Shortly before we left Johannah took me kayaking out on Lake Johnson. It was the freest I had ever felt since the seizures started. Seriously. I don't think she knows that gave me so much more than a ride in her kayak. It was the first time that I felt like my old self again; the self that at times I thought would never come back to me. After my ride I came back and picked up Charlie. He doesn't look like it in the picture, but he loved it. He peppered me with questions about the big pipe under the bridge and how the house on the pier stayed on the water.


The Fergusons and Flores' are also friends that we still miss very much. They had been my walking companions and as a result we became good friends. I know that Emily was the answer to the many prayers that I offered while in St. Louis and was scared of moving to yet another place where I knew no one. We met the first week we were there and quickly became very good friends. Our boys all became friends too as they played together on play dates and when we did babysitting swaps. While I took the picture on the right, Charlie said "I will miss you Thomas." Oh how it broke my heart! I don't know which was the more difficult: saying good-bye to our dear friends or knowing that we were taking Charlie away from his friends and he couldn't understand why or what was even happening.

These are just a few of the people we miss and were dear friends that we still think about and miss. Looking back I realize that the list goes on and on. One of the blessings of the seizures that I see in hindsight, is that it brought me in contact with many more people than I would have reached out to without being in that situation.

During this time, and before we left North Carolina for good we "house sat" for Keith's adviser and her family as they spent a month in Morocco where her husband is from. They have an extensive garden and Charlie was my big helper (and at times my not so big helper) in taking care of it.

When we weren't working Charlie would cool off in the wading pool or go inside to build long train tracks that wound their way under chairs and around table legs. That third picture I just had to throw in somewhere because I love how intently lobster Charlie is examining his pizza.

Boxing up the apartment and then a celebratory lunch (and lemon) before beginning the cleaning.

And then whoosh! We packed up and were headed off on to the next chapter in our lives and new adventures!

Playing Catch-Up

A ton has happened since I last blogged. So I am going to just give a summary. There are a lot of pictures. Here we go...

The 3-generation pixie cut picture and Charlie helping Ama sing to Jane.

My mom stayed with us for two months while I recovered from surgery and tried to figure out the whole seizure thing. I am still having them but hopefully this new med will do the trick. Hopefully?


It snowed!


Mom helped Charlie (or is it the other way around?) build a snowman right outside our window so he could watch it get small, small, small.
Mom went home. :(


We did a little bit of yoga and went on few walks.

 

Aunt Liz and Ben came!

I love the picture on the left. It looks like they are deep in conversation.

So Jane got to meet her cousin Ben for the first time.

Ben likes to put his mouth on every cup or water bottle that his mommy does.

Charlie shared his cars and trucks with Ben, which means love.


Jane discovered her feet, which I think is super cute.


Charlie got a big boy bed (we just took one of the sides off his crib until we move the big bed that our multitude of guests have been sleeping on into his room), and is potty training! He can now keep his pants dry all day but has yet to poop in the potty. We have tried a lot of things but any advice is welcomed.


Charlie learned the hard way that you shouldn't run with your hands in your pockets.


Charlie also parked his cars on the piano (which he has done for quite some time I just have never been sneaky enough to get a picture of it), discovered basket ball (the hoops are high), and "helped" me make pie for pi-day (okay, so that picture is more recent, I just wanted to put it in).


Charlie did tummy time with Jane, Jane is learning to sit up (which she is very excited about until she does a face plant), and Jane discovered rain.



Keith got a few job offers and after narrowing it down to two (Fargo, ND and Kinston, NC) the company in Fargo flew us all out to check out the area. Charlie's first words after exiting the small airport in Fargo were "My face is cold." Yep, cold (very, very cold), windy, flat, with very few trees. Also has great people, good schools, and stores that carry a lot of Charlie's low-pro foods. But did I mention that it is cold and flat?

So we went back home and Keith accepted the job in Kinston, NC. But as soon as he did we both felt unsure about the decision. I just kept on thinking about it being incredibly cold in North Dakota.
Keith, who had a field site in Kinston, suggested that we take a drive there to see the area. So we did, and it was sad and scary. There were these big southern houses that were abandoned and falling apart. Crime was high and schools were terrible.


We did stop at a bar-b-que place that had very southern food. I got collards, fried okra (classic southern food) and carolina bar-b-que (of course). They also advertised fried chicken livers and fried chicken gizzards. I passed on those.

Then we hit Winterville which is a very small community outside of Greenville that was very nice. We kept on thinking of ways we could make living there work (the stores didn't carry any of Charlie's food so we could make trips to Raleigh once a month, etc). I realized on the drive back that if I lived in Winterville I would never want to venture outside of it due to how terrible the rest of the area is.
I reminded myself again of how cold it gets in Fargo and so when we picked Charlie up from our friends place we told them that we were pretty sure we were sticking with North Carolina.

That night, after the kids were asleep, Keith and I sat on the couch and thought things over. In the end we came to the conclusion that we should move to Fargo. Immediately we felt at peace. So Fargo here we come! (In September). Keith and I made a deal that every January/February, when I start going stir crazy I can fly to some place warmer.

Which isn't hard to do when the high with windchill is sometimes below -30 degrees Fahrenheit.

A New Member of the PKU Club

Big brother Ethan, baby Reece, David, and Amy.

PKU is a fairly rare condition. Depending on the the source you read, only one in every 15,000 to 20,000 babies born are PKUers. What that means is that we meet a lot of people that have never heard of it and some who have but don't understand what it is. So when Charlie's dietician asked if she could give our contact information to a family who just recently joined the elite "PKU Club" our answer was an instant "OF COURSE!" It is a special thing to talk with someone who completely understands what it means to be a parent of a child with PKU.

A couple days later Amy (mom to sweet little PKUer Reece) gave me a call just as Charlie was starting his lunch. Our conversation was peppered with the exact same questions I had a year and a half ago as a brand new mom who was quickly moving through the PKU learning curve. We made plans to get together for dinner at our home, and more importantly, let Amy and her husband meet Charlie.

You see, it can be difficult to completely believe the dieticians and doctors that tell you that as long as the diet is followed your baby will be fine. Difficult because you are in a special hospital clinic and they are doctors in white coats (they are only there if there is a problem). It is hard to push the words "brain damage" out of your mind those first few weeks. But when you see another PKU child for the first time the doctor's promise becomes much easier to believe. You stare as this seemingly normal child walks into the room and a big part of the PKU weight comes off your shoulders. I know because I remember that exact moment for us like it happened yesterday and I wanted Amy and David to have a similar one. And I think they did. We got together again this past weekend at their home and had a wonderful time.

Beyond that, we have almost instantly gained a new friendship with a wonderful family. And a kind of unlikely friendship at that. They live an hour away, we are still in the student scene, and David is a successful dentist. There isn't much in our lives that would have brought us together besides PKU. I guess this is just one of it's unexpected blessings.