Friday, January 21, 2011

Our Adventure to the U of M

Today was the day of our appointment at the University of Michigan. We decided to spend the night in Ann Arbor because:

1.The appointment was fairly early (9:45) and Ann Arbor is about 3 hours away (according to Mapquest).
2. We are a little bit directionally challenged....even with a GPS.
3. We received no paperwork from the doctor's office, so we really had no idea where exactly we were going.

The man I talked to on the phone who "pre-registered' me on Wednesday told me to go the Mott Children's Hospital, go to the registration desk and ask for a blue card. Sounds easy enough, right?


We left the hotel in plenty of time, giving ourselves about 45 minutes to make the 3 miles drive to the University of Michigan Medical complex. I should have known it wouldn't be that easy. The map of the campus looks like a Battleship game.

We arrived at the campus with time to spare, until we drove around the campus over, and over, and over and over..... No one told us there was construction....or that streets are not marked....or that the sun would be right in our faces....or that the entrance to the hospital is on the OTHER SIDE OF THE BUILDING!

Jeff and I handle these situations very differently. (That is an understatement.) If you measured Jeff's ups and downs with a line, he would look, well, basically flat-lined. No ups. No downs. It doesn't matter if he's happy, sad, angry, frustrated. Nope. Just flat. It's one of his greatest gifts. Me? I am a little more, er...animated. My line would look like the outline of the Grand Canyon.

At one point, I finally lost it and told the GPS "to just BE QUIET". Jeff very calmly turned it off and stopped the car at what looked to be the childrens hospital (with 5 minutes to spare), and let me out on the curb. The plan was that he would go park the car while I got Clara where she needed to be. I was so mad at this point, I wanted to cry. (Yes. I cry when I get mad. You never want me on your team for a fight, because I just blubber and look like a wimp.) So I stepped out of the car ready for a good cry, but thankfully, it was so cold, my tear ducts froze.

I mean....gently placed Clara in her stroller and ran like a bat out of Niles to the entrance. It's a good thing I looked up when I did, because that door was not about to open for me. It's a miracle I didn't run right into it. It said, "Employee Entrance".

GREAT! Now, I really wanted to cry.

Tear ducts still frozen.

Thankfully, a wonderfully nice lady let me in with her. She escorted me to the registration desk to a helpful man who looked up my appointment and promptly told me I was in the wrong building.


Tear ducts thawing out.

He told me exactly where I need to go. "Take this hallway all the way over to the Taubman Building. Continue onto the carpeted area of the hall and look for "Registration B".

Then, he said it again (because I am sure he assumed the frantic, southern woman could not hear or understand what he was saying.)

"Take this hall all the way over to the Taubman building. Continue onto the carpeted area of the hall and look for "Registration B".

OK. Easy enough.

So, I ran, I mean RAN up the hall, onto the carpeted area (for what seemed like miles) until....I hit a dead end. No sign for "Registration B". No sign of "Registration B".

Tear ducts completely thawed.

It was at that moment that a kind nurse walked past me....or probably wished she had walked past me. She must of seen the look of panic in my eyes, and being the wonderful person that nurses are (they really are a special breed), she asked, "Are you okay? Can I help you?"

Open flood gates.

At this point I was about to hyperventilate. I had run farther in two minutes than I have run in years, and I was panicking. I was so afraid they would turn us away and make us reschedule because we were late.

The nurse from Above began patting my arm, as nurses do so well, and asked where I needed to be, so I sputtered out the best I could, between snot, tears, and frantic gasps of air..Registration... gulp...gulp....gasp...B...sputter....snot."

She assured me that all was well. She assured me that the doctor would still be there when I arrived, and then she assured me that they would still see us. Just what I needed to hear. She escorted me to "Registration B", got me some tissue, and offered me a glass of water... or a shot of whisky. I am as much of a t-totaler as a t-totaler can be, but at that very moment..... Anyway, I digress.

I finally got my blue card, and was on my way to the correct office. The lady at "Registration B" gave me directions twice, too. I must have looked pretty helpless at that point. :-) I wonder if it was the icicles frozen to my eyebrows, or the tears and snot that had sputtered all over everything?

Once I registered and sat down to fill out all the paperwork, it was only about five minutes until they called us back. It was only another five minutes until the first doctor walked in. Yes, I said "first doctor". We saw three doctors and a social worker today. I have never been so impressed at a doctor's office in my life. They really worked like a team. Basically, after looking at her x-rays, they are convinced Clara has or has had rickets. I really kind of thought that was a stretch when her geneticist first mentioned it, but this doctor agreed, and said 'rickets' was written all over her x-rays. (I should have checked those things out. It could saved me a lot of time if I had known her problem was written all over them. Sorry...I am a little tired and punchy.) She wants to see Clara back in six months, but in the meantime, we need to go to a pediatric endocrinologist and a different kind of geneticist. I don't completely understand all of this, yet, but I really haven't asked a lot of questions yet. I have learned through all of this not to get too much information until I know exactly what I am dealing with. For me, it is just unproductive.

The next doctor that came in specialized in muscle strength. I can't remember her exact title, but she was wonderful, as well. She gave us some ideas as to how to continue to build Clara's muscle strength, but is very pleased with her progress at this point. She still functions like a 22 month old, physically, but she has really come a long way. She also prescribed a different kind of inserts for her shoes, and was going to recommend we start the process for an adaptive stroller, but we have already done that.

The social worker came in to talk to us about a secondary form of insurance that is offered to Michigan residents. Clara qualifies because of her mitochondrial disease diagnosis, and it would cover anything our medical insurance does not, including anything that is applied to our deductible. We are unsure as to the cost, at this point, so we are praying for wisdom. We will have all the facts within the next week or week and a half. We are waiting to see what our portion of the stroller is going to be. That alone may make it worth it.

Overall, a very good visit, even though we did not get the definitive answers we wanted. We are a little bit frustrated that we have to go back again least twice, but we feel sure Clara is getting the very best care there. Maybe next time things will go a little more smoothly. :-)

We continue to pray for wisdom, and would appreciate if you would pray with us. God continues to amaze us at His perfect provision, compassion, and grace.

Until our next crazy adventure....

Much love,


  1. Sending hugs to a terrific mom who places her family's needs above her own.
    Ben and I listen each night during his bath-timeto the recording of you singing.
    "Through the fire my weakness is made strong.
    Just hold on, our lord will show up. And he will take you through the fire again." We love your voice and the life lessons you share. You and your family remain in our prayers.

  2. You crack me up!!! Sorry......uuuhhh.....I mean, first, I am SO SORRY it was such a production to get to the appointment, but you REALLY write in a way that I felt like I was there, in the body of a fly, buzzing along, watching the whole thing. I KNOW it was not at all funny then, but the way you shared the experience....and yes, you and I would be killed together in a fight as we would both turn to puddles on the sidewalk!!! I can come across very professional and serious as needed, but there is a point I reach when cry is all I can do!!!!
    Glad the appointments went well. I am praying for your wisdom and your safety in the upcoming additional travels to the next appointment!
    We see our mito doc in Houston to blog!!
    Bunches of love, high-fives, and hugs!! Oh, and like a say here, my life is an athletic event!!!!

  3. Hi there,

    You left a question on Clara-Leigh's blog. So I thought I would check out your blog and answer!!

    We actually live in Utah so Atlanta is not really close. We were diagnosed by Dr Shoffner and had a follow up with him too. Our doctors try to work with him but they have run out of ideas for Maggie. So this leads us to Dr Koenig. Our doctors here are really nice but because we don't know what gene is causing this they don't think she can really have mito. Its crazy really because Dr Shoffner has told them that she does have this and thinks he will know the gene in the next couple of years. Our doctors are nice but they really have no idea what to do for Maggie. So their suggestion is we make her comfortable since she is clearly not well and in, what they believe is, her end of life stage.

    Oh and by the way, I would've been exactly the same way as you wrote in this post. And my husband sounds a lot like yours. I think my husband thinks I'm a lunatic at times. Especially when we are trying to get to a doctors office and even moreso if we have never been there before.

    I pray these doctors are able to help some!!

  4. Sending lots of good thoughts and prayers your way. SO glad to hear Clara is getting such good care!!

  5. Thank you for commenting!

    It is so very frustrating to not have a doctor that really knows what to do. But they think that there is nobody that can do a better job than them. We have found a few docs that we trust to care for Maggie out here but they don't know what to do for her either. I'm just glad we have options to travel or connect over the phone with a good doctor.

    I definitely think that this is how we continue to go on is because there are other people to connect with in similar situations. With all of the unknowns of this disease sometimes the parents know better than the doctors and its nice to be able to have other families to ask or discuss with.

    Thank you so much for keeping Maggie in your prayers! I will do the same for your sweet Clara!