It’s Beginning to Feel a Lot Like Bedtime.

“I will instruct you and teach you in the way you should go;

    I will counsel you with my loving eye on you.”  Psalm 32:8

After a busy few days, I am delighted to be home!
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It was a quick trip to Cincinnati Children’s Hospital, but it was so beyond worthwhile.  I am quite exhausted from all the activity, but I wanted to share a brief report of the visit I had with my new doctors!  (Brief is a relative term, guys.  This is 1,326 words shorter than my last post!)


Last Friday we received a phone call from the genetic counselor at the mitochondrial disease clinic in Cincy, hoping to gather some of my background information so that she could become accustomed with my situation.  This came as a relief to us…  We were wondering how we would  manage to effectively relate my very lengthy history to the doctor and devise some sort of a plan, all within my allotted appointment slot.

This advanced preparation proved to be highly advantageous.  Upon arriving at my appointment yesterday I was pleasantly surprised to find that both the genetic counselor and Dr. Huang were remarkably familiar with my story.  So we very efficiently breezed through that whole saga and were able to focus on an ideal mode of action!

At first I was momentarily taken aback when Dr. Huang said that my previous test results did not provide a definitive diagnosis of mitochondrial disease.  With doctor’s I have seen in the past, this type of statement can usually be interpreted as  “Sorry, I don’t know what’s wrong with you.  Good luck finding help elsewhere.”  A dead end, landing me back at square one in my search for answers.

But this was not the case with Dr. Huang!  He does not know what is wrong yet, but he is happy to help me try to figure this out.  He believes that genetics are the culprit behind my widespread symptoms;  but the question is whether the problem is mitochondrial disease, channelopathies, unknown mutations, or a combination of any of these.

So Dr. Huang has ordered complete exome sequencing for me.  This is a very broad form of genetic testing, and Dr. Huang is confident that it will provide insight and reason behind the seemingly unrelated issues I have.  I mean really, it’s not just a coincidence that I have a collection of rare diseases…  They have to be related somehow.  Dr. Huang thinks the results will even reveal the cause of my mysterious paralysis episodes following anesthesia.  This testing takes anywhere from 3-6 months to return, but Dr. Huang is prompting for results as soon as possible.

I couldn’t be more thrilled with my appointment at the mito clinic!  And my palliative care meeting was positively wonderful as well.  My doctor in palliative care is Dr. Meyer.  Without question he understands the nature of my illness better than any pain doctor I have seen.  Because Dr. Filipovitch, another one of my specialists and the world-renowned expert in HLH, is located at Cincinnati Children’s, Dr. Meyer sees many HLH patients, which is extremely beneficial.  It is not easy to find a doctor familiar with HLH, so his knowledge is very reassuring for me!

He understands my sensitivity and strange reactions to many medications, as well as the complicating matter of my digestive tract paralysis (DTP).  Because of my DTP, oral medications cannot be absorbed properly, often times hindering the desired relief, causing unwanted and potentially dangerous side effects instead.  But a lot of doctors are hesitant or unwilling to prescribe intravenous, intramuscular, or subcutaneous injections for home use, leaving me unable to attain any pain control.  I am very thankful that Dr. Meyer has ideas that he thinks may help me!  He wants to discuss my options with Dr. Filipovitch and Dr. Huang before making any decisions.  Then he will contact my family and me to devise a plan.

Can I get a “WAHOO”?!  Cincinnati Children’s Hospital has been such a blessing to me.  I finally feel content, as though I have found the right place to provide the care I need. Thank you so much to all of my friends who prayed that this trip would provide answers.  Undoubtedly I still have many decisions ahead of me, but the Lord is always faithful…  I am looking to Him to lead me along the right path!

Our trip was remarkably short, but we accomplished a lot in the 17 hours we were there.  And I arrived home in time to celebrate a few hours with my birthday girl, Alice Eloise!  She is pretty impressed with her haul of birthday gifts.
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But what she doesn’t know is that her mama is still planning to make her a quilt and a raincoat, too!  Shhh!

I miss her so very much when I am away.  But I informed my doctors that when I see them for my follow-up appointments in September, I would be bringing my service dog along with me!

And what have I been doing since I arrived home? Well, believe you me, I am wiped out!
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Alice Eloise is pretty tired, too, after a wild slumber party with Aunt Krista, Uncle Tim, and Cousin Lulu! (The silly puppy decided 12:00 am on her birthday was the perfect time to play a game of fetch.) Last night I couldn’t muster the energy for too much birthday hoopla, but Alice Eloise and I did cuddle up to watch our favorite “Bewitched” episode.  (I could, however, find the stamina to chant along with Darrin’s “yaga zuzi” incantation.  His enthusiasm is so contagious, I just couldn’t help but join in!) And today we took a stroll, but otherwise things are moving pretty slow over here.  I predict a movie and an early bedtime in my future.  Goodnight!

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19 Responses to It’s Beginning to Feel a Lot Like Bedtime.

  1. Sue Deist says:

    Sounds like it was a good visit. A blessing for sure. Look forward to seeing you and Alice soon when we are out walking :)

    • Sue, it really was a most remarkable trip! God has been holding my hand through this confusing journey, always bringing me comfort in His presence. But I feel a great sense of peace at these prospects of finding much-needed answers and some relief from my pain!

  2. Amy says:

    Hooray! I’m so happy to hear that things are moving again in your health news. You and Alice look so darling in your pictures. :) Also, after watching the Bewitched clip, I think I know where the term “Zumba!” comes from! Latin dance class, my foot. ;)

    • I have always thought that Darrin was rather avant-guard. He had the idea for Zumba decades before anyone else! And just think of the added respiratory benefits if one were to use a duck call throughout the workout!

      • Amy says:

        I think duck calls would be highly encouraged in zumba classes. I will have to suggest this to my friend katya, who regularly goes to zumba. it’s always awkward picking the correct facial expression because if you choose “serious” then you look like you’re trying to be sexy. A duck call would ease the tension nicely.

  3. Judy Reese says:

    Wahoo! Wahoo! How about a double wahoo! Thanks so much for the update. It sounds like you have found a group of doctors that can help you:) Wahoo! How about a few cartwheels in your honor:)

    It looks like Alice enjoyed her celebration:) Rest up and enjoy some nice movies.

    Love, The Reese’s

  4. Jo says:

    Sarah,
    I am so happy that you had such a good visit! I am praying that God will help the doctors getting you some answers. Alice is just beautiful. Makes me wish the litter would have arrived. We would be getting our little doodle on June 2nd. That is Stan’s birthday. We still have Johnny Cash. Meg is doing a lot of traveling and JC is staying at grandmas for awhile. I do love that dog! If only he didn’t shed. I can sweep every night and there is still hair. He is enjoying the country life but I do believe he misses the big city of Chicago and of course Meg. She is coming home today and will get to spoil him for the weekend. I will be at Dad’s but I will see her in a couple of weeks in Florida.
    Sarah, you are such a special young lady. Keeping you and your family in my prayers!
    Have a great Memorial Day! Love to all!

    • Jo, Alice Eloise really is such a sweet little buddy! I actually got another little red Doodle a week before Alice was born, only to find that she was sick with rare neurological issues. Of course being sick myself I wouldn’t have been able to give that darling puppy all of the special care she deserved, so she found another forever family who could. It was so very heartbreaking for me, but God has a way of making things work out! My Alice Eloise is the perfect pup for me. And I am sure that whenever you do get a puppy, he or she will be just perfect for you, too! And yes, Doodles do have that added benefit of no shedding!

      Thank you so much for your continual prayers and support!

  5. Yvonne Rieger says:

    Hi Sweet Sarah,

    Sounds like a very worthwhile trip to Cincy!! Yippee! I know traveling is a challenge for you, so I’m always relieved when you’re safely back home with your favorite doodle. I’m impressed with your team of doctors that are actually working together as a team to figure things out. I’ll keep praying they follow-thru and provide some answers, treatment and relief for you.

    I just returned home from vacation yesterday and received a nice surprise that my nephew is home for a few days before he begins the second step of his treatment. As you well know, there’s no place like home! He’s feeling and looking good so thanks for all of your prayers for him :)

    Praise the Lord for all he has done for us. I’ll keep praying for you and all the others in need of our Father’s healing hands.

    Love and Hugs
    Dave and Yvonne

    • Yvonne, Cincinnati Children’s Hospital has proved to be a most tremendous blessing for me! Not only are all of my doctors there kind and compassionate, but they are taking a step farther than the vast majority of specialists I have seen and are looking beyond the obvious, digging to discover what is at the root of my illness. Praise God for leading me to this team of doctors!

      And I am so very happy that Glenn was able to go home for a while. I can’t even imagine how overwhelming this past month has been for him and your whole family. I hope he was feeling well enough to enjoy some fun and relaxation at home! All of you are in my prayers each day.

      I love you, dear friend!

  6. JOHN W. JOHNSON says:

    DEAR SARAH,

    A DEFINITIVE DOUBLE WAHOO!!!!!!!

    SO VERY PLEASED TO HEAR FROM YOU AND YOUR RECENT POSITIVE DEALINGS WITH THE CINCINNATI DOCTORS. MODERN MEDICINE IS WONDERFUL AND CONTINUES TO GET BETTER, THANKS TO THE CONTRIBUTIONS AND EFFORTS OF SO MANY (FROM PENNIES AND NICKLES DONATED TO THE DEDICATED RESEARCH OF THE MEDICAL COMMUNITY.)

    A BELATED 22ND BIRTHDAY. AND A HAPPY BIRTHDAY TO ALICE ELOISE, ONE SUPER ATTRACTIVE FRIEND.

    MY PLANS ARE TO VISIT EDWARDSVILLE IN AUGUST AND WE CAN GET TOGETHER THEN.

    MY THOUGHTS, PRAYERS AND BLESSING FOR YOU AND YOUR FAMILY.

    JOHN JOHNSON

    • John, I am still wahoo-ing nearly a week after my appointments! I am excited to have this new team of doctors, a most incredible blessing indeed.

      And thank you for the birthday wishes! Alice Eloise and I like to make everyday a celebration.

      I can’t wait until your trip to Illinois in August! Visiting with you is always such a pleasure for me!

      And of course thank you for your prayers, my friend!

  7. Amy Zagar says:

    Dear Sarah,

    I prayed for you all day yesterday hoping for good things to happen in Cincinnati. It sounds like you had a good experience with your new doctors and I do hope you get the answers you need. Praying for continued answers and longed for improvement. We love reading your blogs and feel like we know you and your sweet Alice!
    The Zagars

    • Thank you so much for your prayers, Zagar family! God’s hand has been very evident throughout my journey, and my appointments last week were remarkable examples of His profound blessings.

      And thank you for following my story and showing your support! Friends like you bring me such encouragement!

  8. Linda Rower says:

    Hello there! I just found your blog today and am so impressed with your God filled spirit! You have much in common with our 19 year old daughter as she too has been through so much medically yet holds onto the wonderul smile and cheery attitude that only God can give. I just wanted to say hello and let you know that we will be praying for you!!
    God Bless,
    Linda Rower

    • Hi Linda!
      I am so glad that you found my blog. Even in the midst of this often times overwhelming journey, God’s many blessings are very apparent, giving me the strength to keep a smile on my face!

      I have begun perusing Lissy’s CaringBridge page. What a strong and courageous young lady she is! God’s love shines through her optimistic attitude.

      Reading of her issues with EDS, RSD, gastroparesis, and such, I just have to ask you, has she been evaluated for mitochondrial disease? I lived with chronic illness for quite some time before we began investigating this possibility, so I always like to be sure that others in similar situations are aware of it, too.

      If you or Lissy would ever like to talk, I would love to be friends!

      • Linda Rower says:

        Hey there! Thanks for the reply :) Yes we are actually just now deciding to persue the Mito road. It has been on the radar for quite some time but she has had so many issues that we needed to tackle one at a time and honestly………….Allissa has been afraid of the Mito diagnosis and hasn’t wanted to head that way until just recently when things have gotten a bit crazy.
        I am positive she would love to be friends :) Let me know how she can contact you and I am sure she will.
        Have a blessed day!
        Linda

        • I completely understand what you are saying… Sometimes it’s all you can do to make it through the chaos of the moment! Whether or not Lissy has mito, I hope and pray that investigating the possibility will provide you with some answers. I read your CaringBridge post today. It breaks my heart to read that Lissy has such pain! I can relate to this all too well. I hope the new medicine brings her some relief. Additionally I didn’t realize that you have been battling health issues of your own. I will be keeping you in my prayers!

          I also read that you plan to see a mito doc in Cincy… Are you going to Cincy Children’s?

          I will send you an email right now so that you have my email address. I am also on Facebook… In the sidebar on my blog under the “Follow me!” section you can find a link to my page!