Goodbye Isn’t What It Used To Be

The challenges of the past year have led us to the conclusion that the best solution is a sunnier and drier climate than the Pacific Northwest. Michelle has made nearly a full recovery from the grand mal seizure she suffered in February of this year. Since the seizure, she has been diagnosed with asthma and vocal cord dysfunction which mimics asthma but has a neurological component to it. We’ve been to multiple doctors this year and they have all told us that Michelle would greatly benefit from a change in climate. Michelle and I visited Las Vegas this past summer and despite the triple digit heat, she did quite well. During the trip she had no breathing problems and when we returned home, so did the trouble breathing. That started the wheels in motion for what has now become our next great adventure.

I gave my resignation to Microsoft this past week. My last day will be Friday, January 10th, 2014. It’s been a great ride with Microsoft, but it’s time to step out on my own. I will be starting my own company focused on project management, event logistics as well as teaching and speaking. I have been asked to be on the advisory council for the Administrative Professionals Conference in Washington DC next year. I have also been given a standing invitation to speak at another conference that will be in Silicon Valley and Chicago next year. Next week I’ll be following up on an offer for work with my first potential client, Microsoft.

In addition to Michelle’s health problems, we have also been dealing with health concerns over our son, Jonathan. He started out the year having symptoms that are common of multiple sclerosis. Fatigue, cognitive impairment and pain. With a family history of MS, this was a bit of a concern. His first appointment with the neurologist was two days after Michelle’s seizure. Two weeks after Michelle’s MRI, Jonathan was having his first MRI. The results showed one lesion on his brain. His fatigue and pain had advanced to the point that he had to finish out the school year in a wheel chair. A break for the summer brought much needed relief. He had several appointments at Children’s Hospital to help him manage the pain. His third MRI is scheduled for Tuesday, December 18th. We expect that it will show no new lesions and no progression of the existing lesion which may be a result of his premature birth and not as a result of MS. Jonathan has also undergone a sleep study. It’s likely that his fatigue and cognitive impairment have been a result of a lack of sleep. We should have resolution on this by the end of the year.

Our landing spot for the first part of the journey will be Prescott, Arizona. We will be staying with family that recently moved from California. The kids are excited about the move and seeing family they currently don’t see very often. Our house in Monroe will be available for rent starting March 1st. If you know of someone looking for a rental in Monroe, please send them our way. I’ll post a link to Facebook once we have the house listed.

We look forward to seeing as many friends and family as we can before we make our big move. There is a road trip to the Spokane area in the near future. We will be at the candle light service on Christmas Eve at Cedar Park. We have a handful of friends that have already made their way to Arizona over the years and we look forward to seeing them when we arrive. In the digital age, goodbye isn’t what it used to be. We look forward to keeping in touch online.  We thank you for all of the support you’ve given us through the years and especially this past year. May you have a Merry Christmas and a healthy and happy new year.

 

Love,

The Stephens Family

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April Showers Bring May Showers

For those of you familiar with spring time in the great Northwet you know how jaded we Seattleites can become when the spring showers start. Well they don’t really start as much as they continue on from winter. The old saying is April showers bring May flowers. In Washington it continues to rain until July 5th. Much longer than most people think it has any business doing so. It’s a great metaphor for our family these days.

It’s been awhile since the last update. We’re a little further down this road and things are returning to normalcy. The back up care has been exhausted. Michelle has had a few days of going it alone with the kids and seems to be hanging in there. A life lesson learned has been that it’s not what you go through in life, but how you go through it. Michelle had three different care givers and each one noticed that a key part of her recovery has been her faith in God. Each had questions for her and Michelle shared what has been her strength through these tough times.

Tonight, Michelle sang at the evening service. It was her first time on stage since the seizure. Little victories are the mile markers on her road to recovery. Her health has been improved, but it’s still a challenge. Outward appearances can be deceiving. She is walking, smiling and even a bit leaner than she was before. She looks great. However fatigue challenges her daily. She says that she can feel how much slower she is than she was before. Her memory has improved. There are still gaps here and there but the functional memory is back to normal.

Our last visit with Michelle’s neurologist was productive. The doctor set the timeline for recovery at six months. That means August is when things should be returning to normal. We still don’t know if the anti-seizure medication is short term or long term. We seem to have found the right prescription and the right dosage for anti-seizure medication. Third time is a charm. Adverse side effects are now a thing of the past. The week before we met with the doctor, Biogen’s new treatment for MS, Tecfidera, received FDA approval. The clinical trials as compared to Copaxone (Michelle’s current medication) show greater success in reducing the relapse rate in MS. Tecfidera isn’t the first oral medication for treatment of MS, but there are very few side effects when compared to Gilenya. Gilenya was the first oral medication for MS treatment. Among other concerns was an increased risk of skin cancer in patients using Gilenya. There are none of those concerns with Tecfidera. Michelle has stopped taking her daily injections of Copaxone in preparation for a switch to Tecfidera. We are very excited that there will be no more nightly injections. She is noticing more weakness than normal and may need a steroid treatment in the interim. We will see how it goes and follow up with the doctor if necessary.

Two days after Michelle’s hospitalization, I took Jonathan to his first neurologist visit. To find a good pediatric neurologist you have to go to Seattle. Two weeks after that he had his first MRI. It was three MRIs actually and he did quite well for a three hour procedure. The neurologist decided that we should follow up in six months. He has been having health problems that have been getting progressively worse. Recently his symptoms have been intensifying. That prompted us to contact the doctor and have him examined again. The appointment was last Wednesday and the doctor was concerned at how much things had changed in a short period of time. This resulted in another series of MRIs being scheduled for this coming Saturday. The following Wednesday we will meet with the neurologist to review the results. I’ll get the scan on cd before we leave the hospital. I’ve read enough of these over the years to know what I’m looking at and what I’m looking for. I’ll have to decide if I want to look at it myself or wait a few days and look at it with the doctor for the first time. If there is no change from the last MRI, we will have to look for a general pediatric neurologist instead of one that specializes in pediatric neurology for multiple sclerosis. The unknown is always the hardest part. When you know what you are up against you at least know what to expect and possibly even how to deal with it. We are hoping for answers and to make progress on this new journey where ever it may lead us.

Your prayers are always appreciated. We feel the difference they make. The peace that abides in our home is tangible. Every one of the care givers commented on it. Thank you.

The pharmacist and I are on a first name basis

The old adage that “When it rains, it pours” has been hitting too close to home these days. Naomi being the daring young lady that she is decided to skydive from her bunk bed about two weeks ago. The end result was a hairline fracture in her foot. She has a post-op shoe that keeps her foot from bending when she walks and she is using crutches for now. Her first day at school with crutches was interesting. I drove her to school and then she came home on the bus. Apparently it’s not that easy to get a little girl with crutches on and off the larger buses. The district arranged for a smaller bus to pick her up right in front of our house. It also turns out that Grandpa Chris is the bus driver, so now she really looks forward to the bus ride on school days. The pain seems to be less and less, but she needs to keep pressure off of the foot in order for it to heal. She’s rather stubborn and needs frequent reminders to stay off of the foot. Needless to say, this isn’t the break we were looking for.

Michelle’s immune system has been weak since the hospital stay. She is still fighting off infection. Today I picked up another round of antibiotics from the pharmacy. I’m such a frequent customer at the pharmacy that I no longer have to tell them the name on the medication. Today, I even identified the meds before the pharmacist could tell me what they were. I’ve had far too much practice at this. Michelle has been to the doctor so many times, I think they’re running out of things to say. This routine is getting old and Michelle is sick and tired of being sick and tired. Her recovery from the seizure is going better than her recovery from what started out as bronchitis and the flu. I’m happy to report that Michelle has been able to move about without her cane most of the time. She still uses it occasionally, but it’s limited to when the fatigue is at it’s worst.

The goal right now is to get Michelle as much rest as possible. Having a nanny help for part of the day has been extremely beneficial. The nanny is subsidized by work for a limited number of hours. We’re stretching the hours as far out as possible. With the minimum visit being 4 hours, we have booked 4 hour blocks through out the week. Tuesdays, a friend from church has been taking the girls for the day. This lets us stretch out the time the nanny covers even further. At the current rate, we will run out of hours in early April. Michelle’s progress has been steady enough that if she can just get over the viral infection, she should be able to get through days with the kids at that point.

Michelle has completely ramped off of the previous anti-seizure medication and ramped up on the new medication. She seems to function better on the new meds, but it’s still a struggle to collect her thoughts and carry on a conversation. If we want to talk about anything, we typically wait until the kids are in bed so she isn’t distracted and can form her thoughts and find her words. One side effect of the new meds is tingling in the hands. She didn’t experience that until the last increase of the meds. We meet with the neurologist on April 1st. We will ask about dialing back the meds to three-fourths the current dose and see if that eliminates the tingling. We also hope to get a better understanding of whether or not the anti-seizure meds are a short term or long term solution.

This past week, we attended the birthday party of a good friend and Michelle had a surprise visit from another friend she hasn’t seen in a long time. It really lifted her spirits and was a welcome change from the monotony of the day to day. If you haven’t called or dropped in but have been meaning to, I would encourage you to do it. Michelle is very much a people person and she thrives on the interaction. She would really like to get back into MOPS, but not being able to drive for another 4 and a half months that isn’t an option right now. If you live in Monroe and attend MOPS at Cedar Park and would like to help with transportation for Michelle and the girls, give us a call.

As always, we genuinely appreciate the prayers and words of encouragement.

How long is the middle?

Today marks one month of Michelle being seizure free. We’re balancing out the meds and after being hit with every kind of bug you can think of, Michelle is finally on the mend. When it comes to viruses and bacteria the safest place in a hospital is usually outside the building. The dosage has been changed a bit on the anti-seizure meds. They still cause Michelle to be a bit slower than her usual self but it’s more manageable than it was. We’re ramping down one med and ramping up another that combats both migraine and seizures. Debilitating fatigue continues to be a problem. Sometimes stimulants (coffee, prescribed meds) just won’t do. The body needs rest. This has been a season of learning what is needed to get better and just do it. Mostly, this has consisted of sleeping as much as possible. There have been moments where Michelle has been able to go a short distance without her cane and she gets a glimpse of normal. The road to recovery has progressed but it feels like a very long road right now.

Friends and family have been helping with meals and the kids. Today I dropped the girls off with a family from church that has offered to watch the girls on Tuesdays for the month of March. Their boys were so happy to see Naomi and Natalie and there were so many toys to play with. Natalie went right to it. No separation anxiety for her. Naomi hasn’t been in that kind of environment before and considering she’s now school age, that’s certainly not the norm these days. She had a bit of anxiety this morning and didn’t want me to leave. Past experience with Jonny let me know that she would be just fine a little after I left.

The beginning for this season in our life was a month ago today. We anxiously await the end but the doctors don’t even know how far out that is. The question becomes, how long is the middle? How long do we live in this in between? Little victories have been won along the way and that helps. Last Sunday was our first Sunday back in church since January. We’ve been watching the stream online (Glad we attend a church that has the people savvy enough to make this happen. Thanks Pastor Craig! BTW, any chance we can get the streaming vendor to support HTML5 in addition to Flash?). Watching the stream is great, but it’s still not a good enough substitute for actually being there and seeing familiar faces. The message this past Sunday was relevant to what we’ve been going through. It was about being grateful for the journey even when the journey isn’t so great. We all have our challenges in life. Enduring them allows us to help others who will have to go down the same path some day. Some are more willing than others to talk about challenges. Michelle and I have always been open with our friends and family. We think it’s important to be genuine, honest and open with people. Always be yourself. You may never know what burden someone else is struggling under unless you are willing to be vulnerable and share. Sometimes people just need to know that they’re not alone in their sorrow or their struggles. There’s solace in not being alone.

I know God is really trying to get through to me when the same theme keeps coming up over and over again. I’ve been thinking about this for quite some time. Those of you that know us well know that we have been through an awful lot as a family. I’ve found that the challenging times have made us stronger people because of and not in spite of them. When we deal with adversity there is a choice. It can make us bitter and resentful or it can make us better for having gone through it. There are some things in life that can not be attained the easy way. If we knew the cost up front, we would often choose not to obtain them and be poorer in spirit as a result. We think we can not endure that kind of trial. On our own strength, that’s often the case. Michelle and I would not be able to endure this without our faith, the prayers of our friends and family and the strength that God provides daily.

Please continue to keep in touch. If you have time in the afternoon or evening to stop by and visit, call or text Michelle. She would love to see you. We’re also looking for someone that can pick up Jonathan from school in the afternoon on Mondays for the rest of the school year. If you think you can help call me or send a note on Facebook.

A New Normal

Tomorrow I go back to work for the first time since the incident. In typical Microsoft fashion, it will be to a new office as we have moved after our most recent reorg. I’m fully expecting a nightmare scenario with Vision Day for Office 16 being held this Friday and my team in deep preparation. I’m a little less apprehensive about returning to work now that I’ve been able to arrange for help with the kids for Michelle while I’m at work. We have the first two week’s covered everyday and Tuesdays through the month of March. We will reevaluate Michelle’s health in another week and see if we need to extend the additional support.

Michelle’s balance seems to be getting better with the occasional set back, but overall there is progress and for that we are grateful. She takes her last dose of the steroid taper tomorrow as well as her last dose of antibiotics. Thankfully the crud she brought back from the hospital is nearly gone. We meet with her MS neurologist this week to review her progress. We should find out if anti-seizure medication is just temporary or part of the new normal. The medicine works by suppressing brain activity and therefore reducing the risk of seizures. Seizures are caused by excessive activity in one part of the brain. Reducing the activity also slows down the individual taking the medicine. If at the very least, Michelle can take a lower dose and be more herself it would likely speed up her recovery.

Memory is still a bit hazy for Michelle. I bought her some comfortable pajamas while she was in the hospital. After I took care of the laundry this weekend she saw them for the first time at home and didn’t remember having them. It’s little things here and there, but when they happen, it’s just another reminder of the seizure and that she still has a long road to recovery ahead of her.

These past three weeks have been emotionally challenging for our family. In the midst of Michelle’s hospitalization I was also making trips to Swedish Hospital in Seattle for Jonathan. I don’t want to get into the particulars on this blog, but the news was very disappointing. Dealing with this in addition to Michelle’s seizure has been emotionally draining for all of us. Your prayers and encouragement are greatly appreciated.

Over the last few weeks we have had friends and family bring meals, help clean the house, watch our kids, stay at our home and be another set of helping hands and many other things. It’s a blessing to have so many people show their love in deeds. Our wealth is in the abundance of those who love us. We are thankful for each and everyone of you.

The First Week Home

Michelle has improved a lot since leaving the hospital a week ago today. There were a few complications we weren’t expecting. Cold and flu season is not the time to bring kids in and out of the hospital. I guess you really can’t pick and choose when you’re going to have a major life event requiring hospitalization. Everyone is on the mend. Michelle discovered that she has a middle ear infection and got meds for it. This was likely contributing to balance issues. She is able to go shorter distances with out the walker but tires quickly. Time will help her regain her strength.

Michelle’s best friend from high school dropped everything and came up last Tuesday with her daughter. This provided a playmate for Naomi and Natalie most of the week. Jennifer was an absolute blessing to have help. It allowed me to catch up on sleep and provided Michelle with some much needed company. Natalie has expanded her vocabulary to include the name “Anna”. Naomi is going through Anna withdrawal even though it’s only been about 4 hours. While Jennifer had the kids at the park today, a neighbor came over to visit and offered to pick up Jonathan from school through the end of the school year. Another friend stopped by and delivered a home made meal for dinner tonight. Michelle called it “Andrea Huenerhoff Quality”. For those of you that know Andrea, you know this is a high compliment.

The weeks ahead will only get better than the last two. A concern of Michelle’s is that since she can’t drive until August, she’ll be isolated. If you’ve been thinking about visiting her, by all means, please do so. Call or text and make arrangements to drop in. Those of you that know her best, you know that she loves people and interacting with good friends. This will be especially important to her in the weeks and months ahead.

It’s nice to know that so many friends and family care as deeply as you all do. Thanks again for all of your love and support.

Volunteers Wanted

My work has been very flexible and understanding with my schedule. I’ve been out since last Tuesday. I’ll exhaust my sick time and use a little bit of vacation as well. I plan on being back in the office on Monday, 2/25.

Fatigue and balance continue to be a challenge for Michelle. Considering it’s only been a week since the incident, she’s recovering well. We’re hoping that she can get back to normal mobility by the time I head back to work.

As I mentioned before, there has been a lot of support and offers to help. If you’ve been wanting to help but weren’t sure how to, here are a few areas we could use some help.

First, Sandra Hanson has offered to coordinate help with meals. If you’re interested, here is the site she has set up: http://www.takethemameal.com/meals.php?t=FSNT6614.

Second, once I return to work, Tuesdays and Thursdays are the day Michelle has both of the girls all day (Naomi is in school on Monday/Wednesday/Friday). This will start 2/26 and run through the month of March. Nancy Hiatt has offered to help coordinate this effort. If you would be willing to give Michelle a break at any point of the day and watch the girls for a few hours you can contact Nancy (nancy.h@cedarpark.org).

Finally, I’m looking for some help next Wednesday and Thursday. I have to take Jonathan into Seattle for some doctor appointments that will take up the morning and early afternoon. I need someone to be at the house with Michelle and the girls each day starting in the morning until the early afternoon. You can send me a direct message on Facebook if you’re able to help with this.

A special thanks to Sandra and Nancy for their coordination efforts. Thanks in advance to everyone for ther help. And thanks agin to our friends and family that have been extra supportive over the past week.