A Windy Weekend

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Last weekend we got out of town and spent four days in the windy city of Chicago! It felt great to vacate for a bit. I’ve been on steroids for just over three weeks now. Steroids suppress the body’s immune response, and given the tough time I’ve had this year with staying healthy, I have been making a concerted effort to avoid situations where I might be exposed to germs. Translated, I’ve barely left the house. A weekend away was just what we needed!

We left midday on Friday and took the train. Lucas was very excited and spent the first hour looking out the window and all the farms and forests we passed by. Did I say Lucas? I meant Gnocchi the cat (a character on Curious George and Lucas’s current favorite alter ego).  “Gnocchi” was meowing pretty loudly while we were waiting for the train, but thankfully for the sake of the passengers around us, he quieted down once we boarded.

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“Gnocchi”

Our conversation for the first hour went something like this:

L: Look Mommy! A forest!  Do bears live in those woods?

B: Probably not, bears usually live further north.

L: But I want them to live in there!

B: I guess it’s possible.

L: Ok, because I think they do. Mommy, look at the farm!  Do chickens peck people?

B: No, chickens peck on the ground for food.

L: But I want them to peck people!

B: I guess it’s possible….

L: Ok, because I think they do.

[conversation repeats nonstop with various scenarios for 30 minutes]

B: Lucas, do you want to play on the iPad?

L: No, I want to talk about farms and forests!

B: ………….

We arrived in time to get dinner and relax in the hotel for the evening. Saturday morning I was feeling pretty tired from the previous day’s travel (and conversations) so I stayed back while the boys went to the park. While they were gone I did nothing. Really. I laid on the bed and stared out the window. It was pretty great 🙂  Sometimes I feel sad when I’m too sick or tired to be a part of activities, but that morning I was feeling really thankful. Sure, if I had my way, I’d love to be healthy and energetic enough never to have to stay back. But there’s always the flip side of the coin.  Jaime and Lucas have a really special and close relationship, in part because of all the times that Jaime has taken care of Lucas without me, and the countless nights they’ve snuggled up together so I could sleep uninterrupted in a dark, quiet room, and all the adventures they go on to give me some rest time at home. It makes me happy to see their bond. What made Lucas happy that morning was walking by the river, running around like a little maniac, and getting a pigeon to eat out of his hand!

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Walking by the river.

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Joy! Energy! Enthusiasm!

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Lucas feeding his pigeon friends.

Other highlights of the weekend included reading stacks of books and building with Legos at the library, visiting a zoo and farm with my sister and her family, a brief stop at the Magnificent Mile, and a full day spent at Chicago Children’s Museum. Lucas also successfully ate food from three different restaurants. That is what we like to call progress!

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I am so grateful that despite not feeling 100% back to baseline, I was able to go on this trip and withstand the rigors of the weekend. According to my Fitbit, I walked 18 miles and took nearly 42,000 steps during those four days.  I thank God for giving me the needed strength (and coffee)!

Yesterday I headed back to my CF clinic to check in with my doctor. My FEV1 was still at 37%, the same as when I went in three weeks ago. I would have been thrilled to see a higher number, but regardless, I am feeling so much better than I was three weeks ago. I’m sleeping better, coughing less, and having fewer headaches. The doctor said that the virus I was dealing with was strong and nasty, and of course in my situation, complicated by my CF and asthma. It will take more time to recover fully, but because of the progress I’ve made, I’m doing a final steroid taper and will be off in five days. Although I’m grateful for steroids, I’m very ready to be off. The flip side of that coin is pesky side effects like sleep interruptions, anxious feelings, and mood swings to name a few. (Jaime and Lucas are probably ready for me to be off too!) I hope and pray that the spring (if it ever gets here), will bring with it an increase in health, stamina, and lung function.

In the meantime I’m counting my blessings–like energy for a fun weekend away, my chattery four-year old, and a helpful husband to name a few.

Spring, Steroids, Streams & Sticks

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Yesterday morning I told Lucas it was the first day of spring. “It’s SPRING?  I’m so excited!” he exclaimed and started dancing all around my bedroom. “Daddy, Daddy, it’s SPRING!” he yelled. He climbed up on my bed and peeked out the window.  “Can we plant our flowers today?” he asked. “It looks warm!”

We’re going to have to wait another month or two to plant our flowers here in Michigan.  It was not warm yesterday in spite of the sunshine (unless you consider the 30s and 40s warm). Regardless, I share Lucas’s enthusiasm for spring! He’s most excited about flowers and veggies.  I’m most excited for cold and flu season to end.

I was hoping I’d be feeling normal by now and through the adjustment phase that I experienced after getting off antibiotic and steroid treatment for an infection I had in February. Unfortunately, things never improved, and after about 10 days of feeling sick, I landed back at the doctor last Thursday. I had been having frequent coughing fits, was sleeping poorly, and was feeling exhausted, sore, and short of breath most of the time. My FEV1 was down only one point from where it was at my February appointment, but in Feburary it was down six points due to the infection I had. So although it was a big relief to see it hadn’t plummeted any further, it’s not where it should be. I didn’t have signs of a secondary infection, and the doctor concluded that the main culprit for my troubles was my asthma, likely kicked up by yet another virus. Friday I started back on steroids to address the asthma.  My body will heal from the virus on its own, but that will take some time.

I’m not sure yet how long I will be on steroids. I’ve definitely seen improvement but still have a ways to go. My doctor is having me check in with him regularly and is adjusting my dosage based on my progress. I’m looking foward to feeling like me again soon. Hopefully by the time it’s warm enough to plant our gardens I’ll be healthy and strong and cold and flu season and all this illness will be a distant memory.

Steroids are a great blessing when you need them but have lots of side effects. Thankfully the worst side effects aren’t a problem when you take them for a short period of time. I do, however, have trouble falling asleep at a decent time at night and alternate between moments of having jittery energy and periods where an exhaustion washes over me and my brain feels foggy. I felt tired this weekend so we played quietly at home. Lucas is very into nature.  Currently forests and bodies of water along with their native animals are of greatest interest to him.  He created a forest out of a tree house toy and played with that for a while at home. When he was done being calm and quiet, Jaime took him out in search of a real forest and stream adventure and left me at home to rest.

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Lucas’s forest tree house. He has created an imaginary animal called the Sharp Pig that lives in dens and under fallen trees in the forest (in case the pink pig was confusing).

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A real fallen tree!

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He was probably digging for a Bumpadoe…another imaginary animal which he informs us is a furry amphibian.

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Sticks, streams, dirt…a little boy’s paradise!

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Joy!

I was sad to miss the adventure but hearing about it and seeing these pictures brought me lots of joy. Lucas also brought me a stick from the forest so I wouldn’t be completely left out. It’s funny how a soggy, dirty old stick can be a precious, heart-warming gift. I’m thankful he thinks of me and wants to include me even when I’m sidelined by my health. I’m hoping with the arrival of spring and the help of these steroids, next time I’ll be digging in the mud right along with my boys 🙂

That night,  Jaime was snuggling in bed with Lucas as he was falling asleep. At one point Lucas rolled over and whispered, “Daddy, I’m really happy.” Then he closed his eyes and went to sleep. Oh the beauty of joy mixed with peace and contentment! It blessed me to hear those words from my four year old. These frequent illnesses have been challenging for all of us, but there’s a hope that fills our hearts and we are reminded over and over that we have so many things to be grateful for. Today I’m thankful for joy, peace, and contentment in the midst of struggle.

And for spring, steriods, streams and sticks 🙂