March

I cannot blame the lack of blogs on anything. We haven't been extremely busy, and things have not necessarily been eventful. Maybe because of the lack of "events," nothing has prompted blog writing. And for this, I am sorry to readers, but NOT sorry that nothing is going on. So for this blog, I will do a review of the month of March....BUT does anything really need to be said other than "March Madness???" Because this is the month for Jason!

Stephen Hawking, a long time ALS and scientific spokesperson that somehow beat the ALS statistics and odds, passed away. Hawking had a rare early-onset slow-progressing form of ALS that gradually paralyzed him over the decades. The diagnosis came when Hawking was 21, in 1963 and he passed away on March 14, 2018 at the age of 76. Jason got a trach just over 14 months after diagnosis (and just over 18 months after first symptom) for breathing issues. To my knowledge, Hawking never had a trach. Was part of his survival the team he had to care for him? It is definitely not known, and there are many theories, all of which I (Liz) have read, but I don't think we truly know what all happened in the daily life of Hawking either, how much help he had or what he went through in day to day life. His life cannot be summed up in an article or just by brief mention in this blog, as no one's life can be summed up this way. I truly believe that the life of anyone lives on in thoughts, memories, accomplishments....LEGACY

Here is an article with theories on

How Has Stephen Hawking Lived Past 70 with ALS?

We did go on a little vacation! Well, it was two of our very good friends, Cameron and Stacey's wedding weekend in Alabama at Pursell Farms. The wedding took place on March 17, but we count this as a vacation for sure! What a place this was! Cameron and Stacey were so giving to us to ensure we had the best room available to our needs. And the staff-there are no words-they wanted to do anything and everything to help us. It was a great get away <3

We just love these 2!

Cameron married us-he was our officiant.

And Stacey is just the perfect match!

Can't leave out spending lots of time with Daniel, Karen, and Camila!

My forever wedding date <3

They did have me speak at the wedding. Jason and I were asked, and he was not comfortable doing it. Me-no question YES! I do not know where my speaking abilities came from, as I don't think I've had them all my life...they had me read from 1 Corinthians 13:4-7 during the ceremony.

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.

And if you two want to know why I had to pause for what seemed like an eternity to gather myself....love is so much more than this, and some days not this at all. BUT, it is what you should strive for!

My parents came for a 2 night weekend in March, the weekend of the 24th. Jason's parents and my parents have somehow ended up switching back and forth the months that they travel down. Jason's parents do the even months, for the most part and mine do the odd months-I just love it!

There were no doctor appointments (for Jason) in the month of March, but we did "call the doctor" on March 28. Jason had persistent daily fevers (every 18 hours or-so up to 101) and was just NOT feeling good. Jason is pretty easy to please, and one of his wants out of the ALS life is to "not feel like crap."

That is a direct quote!

So, it was time to call the doctor. We send a message to our lovely lung team on the patient messaging system to the nurse practitioner, Brittany. Jason wants to forego going to the hospital if at all possible and it has been since January that the fevers have happened.

Side note: this seems to be an every 2 month occurance no matter what we do!

So, a 10 day course of antibiotics were called in to our pharmacy. We were able to pick up 3 days of the supply in the drive through, and I was able to go back later for the rest. The antibiotic did not work, as fevers have persisted after completion on 4/7/18. The 3 month trach change appointment is moved up to Thursday, April 19 and a sample will be taken and cultured then. Doctors are not likely to prescribe another course of antibiotics so soon because of gaining resistance and Jason still did not want to go to the hospital for admission to treat because of activities surrounding our baby-showers and seeing family and friends in NC, something that I very much need. Jason does things for me without even saying it, like refusing to go to the hospital so I can get the much needed love that I miss daily.

There is definitely a fine balance of feeling good and trying to live life that we manage daily.