Category: grief journey

Ok – now we are finally home. Arrived late last night. I’m exhausted. She’s exhausted. We’ve taken today off to regroup and get our game plan on for the next few weeks.

We don’t know much more than before we went, but what we do know is… she is going to require new medications to help control the seizures and we still don’t know why she is having them. They are reviewing all the tests and info and will be getting back to  us in the next few weeks.

Thanks to all for your prayers and concerns.

until next time,

Be grateful everyday for your health. Be grateful everyday for your children and family. Be grateful everyday for the simple things in life. You don’t always know what you have until it’s gone!

Mercedes

 

 

Day 4 – Monday Discharge Day

Today we got more info, but not without pressing for more than “we are working on it”. Today�the�specialist�said she is definitely having Petit Mal Seizures and they are happening a lot. I asked how many on average daily and got no definitive answer. Later her NNP told me it was hard to tell where the clinical (see it) seizure activity ends and the non-clinical (can’t see it) seizure activity begins. In other words, she’s having seizures so often that at times they are merging together. Some we see and some we don’t. Some last for 10-20 sec with some motor activity and some are just brief starring episodes lasting 5 seconds. Sometimes she’s aware of them and sometimes she’s not. This was happening without any changes to her meds.

Now we are able to start changing medications, but it will be a very SLOW process. That is very hard to deal with. It’s only been at least 1 year since this increase in seizures started.

I want so much for her to be independant and be happy. Go to college, do normal stuff. Is that so much to ask? It’s what most parents want for their children. If only those parents of normal, healthy children knew how lucky they are to not have this worry.

I am so lucky to have my daughter. I’m grateful for every minute with her – good or bad. I’ve been blessed every step of the way with her. She’s beautiful, smart, creative and most of all, the best daughter. I only want the best for her.

Tomorrow – Tuesday we are seeing a Metabolic / White Brain Matter Neuro specialist to review the underlying cause of her increased seizure activity. After that appointment, we should be on the road back to GR. I anticipate being home sometime around 10pm. Tuesday evening.

I will write more later,

Well it has been very busy and very boring here at the Cleveland Clinic. I would have to say I am very disappointed in the progress here. And we’ve had at least one med error possibly two. I’ve had to watch them a lot closer. She got her Zonegran (600 mg) twice in one day. Her max dose is 600mg once daily. She was really tired, but no other side effects. I asked to have her hydrated with IV, but they felt it wasn’t necessary. It’s hard to stay on top of everyone when you’ve had little to no sleep for 3 days. Urg. But, we did get her meds reduced down to two and then an increase in one of the remaining meds. Her seizures were confirmed on monitoring and they are generalized in nature. No particular foci – so that’s good news. Because that means her seizures are not coming from a new area. She does believe that she’s on too many meds and too many meds that aren’t doing anything. She also feels that her doctor in GR should be able to manage her from there following her plan of care she is developing for us to return with. So it’s not a sudden fix, or concrete plan. But she did say that if there is no change or she backslides, then immediate changes need to be made with other drugs. No adding them, but stopping others and adding the new.

So – in some ways, I feel this has been a disappointing trip, but in others, a justification that she is on too many meds and that will be adjusted in the hopes of getting her down to only one or 2 meds in the end.

The white brain matter doc will probably see us tomorrow to go over this findings and suggestions. I know they are running more tests tomorrow but still we should be able to come home.

unil next time,

Mercedes

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OH – GO MICHIGAN 4-0 – WHAOOOO

Too bad MS didn’t learn from Michigan on how to handle Notre Dame – HAHAHAHAHAH

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Well – update day 1

We’ve been in Cleveland for 24 hours. We’ve been very busy seeing many doctors and specialists regarding Brit’s seizures. Now we are just waiting and she is monitored 24/7 on a unit. It’s very secure here. No one gets in or out w/o a lot of scrutiny.

We are optimistic that we will get some answers soon. Tomorrow will be more interersting. Her meds will be discontinued and restarted.

Keep us in your prayers while we undergo this treatment. But it does look like we have an excellent team here at the Cleveland Clinic.

until later,

Mercedes

Epictetus taught that some things are in our power and some things are not. Examples of some things that are in our power are:

Opinion
Movement toward a thing
Desire
Aversion (turning from a thing)
in a word – whatever are our own acts

Things that are not in our power:

body
property
reputation
offices (magisterial power)
in a word – whatever are not our own acts

With this in mind, consider this…

If you then desire (aim at) such great things, remember that you must not (attempt to) lay hold of them with a small effort; but you must leave alone some things entirely, and postpone others for the present. But if you wish for these things also (such great things), and the power (office) and wealth, perhaps you will not gain even these very things. – exerpted from The Encheiridion: The Manual for Living 2005

What to take from this…..

Focus on one thing and give it everything you can. Otherwise if you try and spread yourself too thin attempting to attain it all, you’ll probably end up with nothing.

What a wake up call! Esp. for me.

until later

Mercedes

Today’s Parade Magazine in the Sunday Paper

“If you had one day to spend with someone who’s gone…Who would it be? What would you do? by Mitch Albom

Well – that got me thinking….

Yesterday, September 16th marked the 18th anniversary of my mom’s passing. She was 48. My age. Sobering thought!

I would want to spend it with her. I lived away from home when she became sick. She was diagnosed with Breast Cancer in April 88 and died on September 16th that year. Just 4 days after her 48th birthday. I was 7 months pregnant with my daughter then. Having to bury your best friend, your mentor while carrying your first born, well, it was a devastating time.

I’d like to spend time with her now, share with her all the things that have happened since then. How we have come so far in the diagnosis and treatment of Breast Cancer. How I have become an advocate for change in women’s healthcare because of her story.

Breast Cancer Awareness – Komen Foundation

 

Brittany

How her grandaughter, she’d only seen on ultrasound has blossomed into the most beautiful young woman I know.  (Picture above)

I’d tell her how proud I am to be her daughter and how much I miss her. Everyday of my existence.

BUT SHE ALREADY KNOWS – I tell her everyday. I know she knows, because God is an Awesome God and she is there with him. Watching and keeping a close eye on us.

Mom – love you!!!!

until later,

Mercedes

Epictetus – A practical Philosopher – What A Concept!

One of my favorite reads – Encheiridion “The Manual for Living” is a collection of teachings from Epictetus and during the coming days / weeks, I will be writing about them here.

Epictetus was not a writer, but a teacher – he emphasized to his followers to live a moral life and to be happy.

“Seek not that the things which happen should happen as you wish; but wish the things which happen to be as they are, and you will have a tranquil flow of life” – –  from VIII The Manual for Living

 

Keyword: Gratitude

 

until next time,

mercedes

 

Today in church the message was on what to do when you are faced with trouble.

And you know, trouble is always around – lurking, waiting to show it’s nasty little head when we least expect it. It’s how we manage it that will enable us to keep trouble at a distance.

When trouble comes….

Live by faith…

God is our refuge and strength, always ready to help in times of trouble. -Psalm 46:1

“You don’t have enough faith,” Jesus told them. “I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, “move from here to there,” and it would move. Nothing would be impossible.” – Matthew 17:20

Live by joy…

“Always be full of joy in the Lord. I say it again – rejoice! “Let everyone see that you are considerate in all you do. Remember, the Lord is coming soon. “Don’t worry about anything, instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” – Philippians 4:4-6

Faith will always be tested, but from that endurance will become stronger so you are prepared for anything.

Never let up the pressure to push trouble away – don’t ever give up.

Live by gratitude…

In everything give thanks.

Even in the midst of trouble, because not everything flows from God.

You have to work at this every day.

Remember: if you are not thankful for what you have today, you will not be happy with what you will attain later.

Thanks to Pastor Duane at ResLife for a perfect reminder of how I need to live everyday.

So the next time trouble comes… instead of dwelling on what you don’t have, be grateful for the wonderful things you do have. Life is too short and we have much to do in our preparation to live eternally in Heaven. Are you ready?

Until next time,

M