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.

So what exactly happened?

We are grateful for the prayers, well wishes and all of the help that has been given and offered. It’s been challenging trying to keep everyone updated and the help coordinated. I’m starting this blog to keep everyone updated and to let people know what kinds of things we need help with.

So here’s what happened.

On Tuesday, February 5th while waiting for MRI results at Evergreen Hospital, Michelle had a grand mal seizure. She had no history of seizures. She had been battling extreme fatigue and a migraine among other symptoms. It was the moments of forgetfulness and confusion that proved to be the tipping point. By Tuesday morning she had three of those moments in less than 24 hours. She would have two more that day and we would later find out that these were minor seizures. I contacted the neurologist at 11 am and had Michelle in their office by 11:30 am. Michelle’s symptoms prompted the neurologist to get us on standby for an MRI. The ladies at church had arranged for Naomi and Natalie to be watched and Jonathan was in school. We were able to get an MRI at 3 pm. Knowing that it would take at least an hour to complete, I left and picked up Jonathan from school and then the girls. We returned to the hospital just before the MRI was complete. It would take another hour to get the results. We went to the waiting room and it was there that Michelle had her seizure. It lasted about 3 minutes, but felt like an eternity. She was in a catatonic state for about 45 minutes afterwards. They took her to the stroke recovery unit at Evergreen and she was there until Friday evening. Recovery from a seizure can be similar to recovery from a stroke. It has been shocking to Michelle how much of a toll physically the seizure took on her.

The official diagnosis is that she had an ms exacerbation that resulted in a seizure. It’s a very rare occurrence, but it does on occasion happen.

I’ve been talking to the older kids and trying to help them process what they saw. All three of them have been sick since last Thursday. The carpet cleaners came on Saturday. Life has been crazy, but it goes on and for that we are grateful.

Currently, she is using a walker to get around. Fatigue is pretty bad. Her memory is improving, but she has no memory of the actual seizure and many of the events leading up to it. She is not allowed to drive until she has been seizure free for six months. I have been away from work since last Tuesday. I’m fortunate to have such a supportive employer and an understanding boss. This week I’ll start figuring out what the new normal looks like. I’ll continue to keep everyone updated right here.

Thank you everyone for your support.