The Eagles’ Nest and The CF Walk

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Eagle Nest

If you follow my Instagram account (@suzannebrandsen) you probably know our recent obsession with this bald eagles’ nest in our area. Rumor has it that there are 2 babies and probably two parents, so obviously we’ve activated total NatGeo fan mode. We stopped by the nest with my parents and Mark and Jess and the kids on Mother’s Day and were treated to a full show – one of the eagles circled high over the nest and then came to land on the tree and hang out. It was so exciting to see up close!

Anyway, if you’re local and need directions to see for yourself just let me know. OR just come to the CF Great Strides walk this Saturday (remember, it’s at NOON this year) because it’s less than a mile away! Who knows, maybe you’ll be able to see the nest on the walk! The suspense is killing me! (Seriously, I’m not really keeping my cool very well with this one.)

The point is, see you Saturday? Here’s all the info on how to donate and/or join our walk team.

 

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Some Happy Updates

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Hi! Lots of news to share today, so why not dump it all here?

First, many of you are faithful supporters of the annual Cystic Fibrosis Foundation’s Great Strides walk, either in person or by donating. Thank you for that! This year’s walk is coming right up and we’d love to have you back. It is Saturday, May 19th with registration at 11 and the walk at noon. The location is still Millennium Park Meadows Pavillion. Here’s a link to my page where you could sign up to join us or make a donation. Thank you in advance!

On that note, your research money has contributed to a new medication that (my brother) Mark and I have recently started. It is a twice-a-day pill called Symdeko, and it’s a big deal. It is the second medication that we’ve had that treats the disease and not the symptoms, which is huge and groundbreaking as far as treatments go. The first one, Orkambi, didn’t work out for me. It had negative side effects that took away any benefit for me. This one is kind of like Orkambi minus the negatives, and I felt a difference as soon as I started taking it. Mostly I noticed things like improvement in my swim and being less out of breath going up stairs. It’s not changing my life in a big way BUT the fact that I can feel it helping me is a new, foreign, WELCOME feeling. We are so grateful for this new treatment! My doctor describes the next one coming (probably a couple/few years out) as hugely impactful, so keep those donations and prayers coming!

I have other happy news to share about Mark AND Jess. Mark was very sick this winter with the flu and then pneumonia, and he spent significant time in the hospital. A couple of weeks ago he had a follow-up with our doctor and he has recovered to where he was before getting sick! If only we could have seen April in January. Ya know?

Clara Turns Two

And Jess, who has struggled with migraines and other health issues for the past two years+, is feeling much better and has just been cleared by her migraine specialist to return to work. Her boss has been hoping to hire her back and HELD HER JOB for her as an oncology social worker. She is working 20 hours a week for now as she acclimates. She is thrilled to back in her old position and has been getting lots of affirmation from co-workers. Also, “Baby” Clara just turned TWO last week. How?!

For myself, I’ve had a good spring. Of course I’d love to breathe better but I’m holding steady right now and I’ll take it! Josh and I didn’t do any traveling this spring and it’s starting to sound like a good idea. Right now we’re dealing with a robin who eeearly every morning bashes into our bedroom window, waking us up before we’re okay with it. And we’re still so happy it’s spring! Thank you for those who loved on our family this past winter – and beyond – as we’ve done some hard living. We are so grateful to God to have happy news to share!

All About January

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Some of you may already know, but this Patten family has had a rough go of it. Early in the month the flu hit (my brother & SIL) Mark and Jess’s house – both Mark and Jess had it at the same time. Mark got sick enough that he spent a few days at the hospital at U of M, before coming home on IV antibiotics. Jess was sick with the flu on top of recovering from a hysterectomy also in early January. Their 3 kids stayed with my parents for two weeks while we all tried to prevent spreading of the flu (successfully, by the grace of God!).

It’s been long and hard.

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After a few days back at home, Mark’s health was declining once again and my Dad brought him back to U of M a week ago Sunday. The flu had progressed to pneumonia and he’s got a decent case of it. The recovery is not a quick one. Even today, his fever is back. He has been slowly making progress and a step backward in that progress is a bummer. We are all so grateful for the care he is getting at U of M!

Jess, however, has been feeling better and better (flu’s gone, and her recovery from surgery a month ago is going well) and she was able to spend a couple of nights in Ann Arbor with Mark last week. She also had the kids back at home last night! With 3 busy little ones that’s great progress.

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Of course I’m leaving a lot out but the point is that things are hard right now. We welcome your prayers on behalf of our family! I know some of you will want to help in other ways, and it would be much appreciated. Thank you for loving on my family during this time! I hope to have better news next time you hear from me.

2017 – An Actual Highlight Reel

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Happy New Year! Here’s a little preview of our card that was just sent out this week.

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In defense of my tardiness, I was sick through the holiday card season and decided not to worry about it until after. Why do you think we send New Year cards instead of Christmas? No deadlines!

I haven’t done much posting here this past year, so now.. where do I start? I’ve decided to just do a highlight reel of videos from over the year. Obviously our moms will be the only ones to watch them ALL but you know, pick your favorite.

Our year’s highlights included a couple of fun trips, and the first one was back to Palm Springs/Joshua Tree in March. I had just finished a round of IV’s and you know, we just followed the sun. We discovered our dream neighborhood (a trailer park – seriously, watch the video) and explored the Desert X Mirror House before the hype/crowds really hit. (Desert X is a new ArtPrize-type event in the area, that should help Grand Rapids people understand)

From there we went over to Joshua Tree and stayed in the best Airbnb we’ve ever had. The location was perfect and … AND.. it had a steam shower. It changed my life and now we’re putting one in our house. As one does.

As many of you know the Patten family has had a couple of hard years health-wise, especially with my SIL Jess fighting migraines among other things. We do spend a lot of time together, which we all love, but we don’t spend many days at the lake together. I’m glad I brought the camera along for this afternoon in July.

Another highlight of our summer was traveling to NYC with 40 of Josh’s students and 5 adults. Whew! Just picture a group of 45 working their way through Times Square on a busy afternoon, or the subway, or going through the line at a fast food restaurant. Or, you know, anywhere. By the grace of God no one was lost, no one lost anything, and we all had a great time. This is a long video but you’ll basically tour NYC in its entirety if you watch it. And you’ll get to see Josh on the job, always a treat to me.

The last video I’ve got is from a few days spent up north at the end of summer. Josh’s busiest season of work is the first half of “summer break”. That’s when they do a 6 week summer school program where his high schoolers live on campus at GVSU. So, we like to take a breather when the summer program is over. We keep wondering why we don’t spend more time in this area of MI – it’s just so beautiful.

After a healthy summer and fall, I had the opportunity to take a road trip up the Pacific Coast Highway with my good friend April. We live in different places and even just that much time together was a luxury. Not to mention, could you ask for a better place to road trip? So here comes the sad part – of course I brought my GoPro… Took soooo many videos… And my camera card was EVILLY corrupted. So no video from this special trip. We’re consoling ourselves by acknowledging that people used to just survive on memories. But. UGH. Anyway, what a great trip!

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After the trip I spent most of early winter fighting off a lung infection, which involved a confusing allergic reaction to meds in November and ended up on IV’s in December (see my last post for more). I’m happy to say that the IV’s seem to have been successful and I’m coming out of my “hole”, a wonderful way to start the new year. Being sick this time of year is somewhat expected, but no fun.

Not captured on video is a home project that Josh and I have been working on – putting a bathroom/laundry room in our unfinished basement! That steam shower I mentioned is THISCLOSE to being a reality. We’re also looking forward to doing laundry in our own house again. It’s pretty exciting!

So there’s a little update from our house! We so enjoyed hearing from many of you over the holidays. May 2018 bring many blessings your way!

(If you were unable to see the videos from this post, see them here)

 

Hospital Hang Time

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Happy December!

I took this picture today on a beautiful walk in sunny warm weather.. at the hospital at U of M in Ann Arbor. So how about a little health update, huh?

I’ve been fighting a lung infection without success on oral antibiotics for weeks now, and on Thursday we finally reached the point where we knew I needed more help. This time, one of the IV antibiotics chosen by my doctor is one that I am allergic to, which means I have to spend a few days here at the hospital. I was successfully desensitized to it yesterday (this is my second time doing this process. The first time was almost 2 years ago. It blows my mind.), and tomorrow I get to go home for a couple of weeks of IV’s. I’m so grateful for the really great care I get here at U of M but obviously we’d rather have me home.

Thankfully, I haven’t fully “fallen apart” and I don’t feel super sick, but I do have enough symptoms to have confidence in this decision. One unseen difficulty of living with CF is knowing when to push through and when to ask for more help. It’s one of the hardest things, making those decisions.

Anyway, I am a little foggy and not feeling all that wordy, but wanted to let you know about it. Some of you have been checking in lately and not getting calls/messages/emails back (sorry!) and this is why. I hope I can be a little better about responding in the future, but thanks in advance for your prayers and well wishes! I hope to have a happier update soon.

Update on Jess

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Edit: SCROLL TO END OF POST FOR UPDATE..

Posting a blurry picture of a hospital bed because I don’t know what two years of headaches really looks or feels like…

So here it is, after almost two years of suffering from daily migraines, this week finds my sister-in-law Jess in the hospital for treatment. She has had a long road of many tests and treatments and life changes brought about by these headaches, and this is the next step in the search for healing. The goal is to break the cycle and get 24 hours pain-free, which will also hopefully shock her system and set a new course away from pain. This morning while I was there she said her pain was at a “9” out of “10” so the meds haven’t kicked in yet. The doctor said they may not until her fourth day, two days from now.

(I should probably also say that Jess isn’t allowed to have visitors – so if you want to send something her way I can help you out with that)

I’m letting you know because this is a really good week to be praying for Mark and Jess and their family. As you can imagine, with 3 little ones this is a big undertaking and we desperately hope it will be helpful to Jess. ALSO. Mark (has cystic fibrosis) is not feeling well. It is very possible that he is looking at a course of IV antibiotics which is its own kind of circus.

It is likely that the next few weeks at their house are going to be tough. Thank you in advance for praying for and loving on our family!

BTW here’s a shot of us from the other night – photo taken by special visitors from out of town, Uncle Dale and Aunt Juanita!

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Two words: tent dress. Two more: bad choice. I’ll leave you on that note. Hehe!

Okay, here’s an update from 8/22/2017: Jess was sent home yesterday after a rough weekend. The bottom line is that the treatment wasn’t effective enough, which is a disappointment. Over the weekend her picc line ended up having to be pulled and she had a break from meds which did complicate things but I don’t think it would’ve changed the ultimate decision by the doctor. Her next step is an appointment with her migraine specialist this coming Monday. Mark is still on orals, still feeling sick, and I believe the kids might be back home tonight (my parents have had them) but we’ll see. Thank you for your prayers, keep them coming! This is not a one-week thing in Jess’s world, it is ongoing.

Some Summer Stuff

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Happy summer you guys! I’m just popping in quick because the to-do list is a mile long today. Josh and I are leaving SUPER early in the morning with 40 of his students (and 3 other chaperones) for New York City! Pray for us. Heh.

Actually I’m really excited – they take a trip every summer and they do so much fun stuff. Last year was the first year I went along (Disney World, I wrote about it here) and the kids were so fun to be with. I’m really looking forward to it!

My big role on the trip is to make a video, so I’ve been doing a little practicing. This past weekend we spent the afternoon at the beach with my family and Josh’s brother Nate to celebrate Josh’s birthday, and I made a fun little video just for kicks. It’s got windsurfing, wave jumping, and Clara’s obsession with the camera. Check it out!

Video link here.

 

The Walk

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Another Great Strides Walk is in the books, you guys! Thanks so much to everyone who gave $$$ and time to raising money this year. Our team raised a whopping $2,765! I’m so humbled by your generosity each year and you inspire me to give big too. So thank you! I didn’t post an update right away because I actually started IV antibiotics right after the walk. It had been 15 months (!!!) since I’d done IV’s and my lungs just needed a boost.

I’ve been done with all of the meds now for just over a week and things are looking up. Truthfully, I was hoping for more of a boost than I seem to have at present, but I think that will probably always be true. I do feel as though it brought me back to my “baseline”, whatever that is. Ha! CF can be a hard thing to figure out.

I’m slowly crawing out of the “IV hole” and getting back into more normal routines. For example, I hardly spend ANY time in the kitchen when I’m sick. I gag easily and my appetite is always at risk on meds, and Josh is so SO good to me. He does it all! It takes some adjusting on the other end of meds.

Anyway, just thought I’d pop in and let you know where things are. Thank you again for your support of the Great Strides Walk!

(In case you’re wondering, I’m not in the picture of our team at the walk because I don’t actually do the walk. I have bacteria in my lungs that I don’t want to share with other people with CF, and I def don’t want theirs! So I join our team afterwards, but this picture was taken before it started.)

 

Some News

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I had a checkup with my CF doctor recently and he had some good news about research that I want to share with you today!

The appointment itself could have gone better – I ended up on oral antibiotics. It’s been two weeks now (out of 3) and I’m seeing some improvement, so I’m grateful for that. Weirdly, my voice has been a topic of conversation with my doctor lately. He even had me be seen by an ENT, a first for me. I’ve been taking an inhaler for a couple of years now that brings a couple of fun side effects with it. One is a monthly case of thrush, which isn’t a big deal. The other (at least we wonder if it is caused by the inhaler? Hard to tell..) is that I’ve been hoarse and losing my voice a lot. People often assume I have a cold (I don’t). The only information we got from the ENT is that I have some scarring on my larynx that can’t be reversed. Hm.

Also my lung function has been low for quite a while now, lower than anyone is comfortable with. Both my doctor and I like to think that it can come up some. There is a cyclic component to CF that does bring hope of improvement, but we can never know for sure. Anyway these things led to the decision to do antibiotics and I have felt improvement in both areas, which I am grateful for! Not sure how much “room” I have gained in my lungs but even by reducing congestion I feel relief. So as always we are grateful for your prayers in regards to these lungs of mine!

ANYWAY on to the good news! To be honest I don’t keep up with CF news much. We spend more energy on living life despite CF, but we are grateful to all who work daily on our behalf. So you may know this already but it was news to us. There is a new drug coming down the pipeline that is scheduled for release in the next 6-7 months, and it sounds like an “improved version” of the one that came out two years ago, which I blogged about here. The last one did NOT work out for me, although I think my brother Mark still takes it. I got pretty sick soon after I started it and we think that I was one of the people where, instead of helping me some, it hurt me some. Or at the least, I just didn’t benefit from it. The new medication that is coming is said to be like the Orkambi, but minus the negative side-effects. I’m listening!

Basically two years ago Orkambi changed the starting point for research, and many of the new medications coming down the pipeline are springing off that platform. It is exciting stuff! Do you see where we’re going here? …..

That’s riiiiiight, our Great Strides walk is coming up NEXT SATURDAY and you have the opportunity to be a part of this exciting moment in CF research! If you stuck it out this long through a very wordy post, I thank you.. And, here’s the link to join my team! Or just donate! 

Thank you for giving to this cause, and for the love and support you give our family. Sending the love right on back!

Great Strides 2017

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If there’s one thing we can count on me for, it is for being LATE in bringing up the Great Strides walk every spring. Every year! They start in on me in December, and I’m all, “No way! I’m not bothering anyone until a month beforehand because I like having friends.” And then suddenly it’s less than a month away and I have no idea how this happened. Every year.

Soo, thank you for being gracious with me once again as I ask you to consider joining us at our walk on May 6th at Millennium Park! (Registration at 9, walk at 10)

We are so grateful for your generosity to this cause in the past and hey, why stop now? (UGH AWKWARD) (this never gets easier) (probably why I put it off every year) … Of course if you’re unable to join us at the walk but would still like to donate, you can do that here! Truly, as someone who has reaped the rewards of the CF Foundation’s research and who is counting on more of it, I do thank you for giving to them.

OKAY we woke the blog up from winter slumber. I guess that means I’ll be back soon with other stuff to post about, including where the photo (above) was taken.

Let me know if you have any questions about the walk!