Working Out the Kinks

Today was our first run through with transporting Meg to and from Children's and St. John's for procedures and treatments. Things did not go well. Too many different factors were involved for me to detail. It wasn't for lack of planning, either. It's the execution of the plan that plain failed.

The senior social worker and program coordinator are very invested in making her daily transfers smooth. We spoke candidly and at length with them both. It's quite an undertaking getting her where she needs to be everyday, plus meeting her rehabilitation requirements.

Meaghan's procedure today was for the full spinal MRI and a baseline audiology reading, both requiring sedation. In fact, everything Meg has done will require sedation. This is unfortunate, but necessary to ensure the treatments and procedures are precise. Please keep the MRI pathology in your prayers. That's our last clinical hurdle to overcome before qualifying her for the ACNS-0331 protocol. This protocol may enable Meg to receive lesser amounts of radiation during certain portions of her treatments. It's all double randomized and quite involved, so please feel free to look up the protocol if you are interested in learning more.

Meaghan receives therapy services Monday through Friday, 9:00 a.m. to 4:00 p.m., with a break for lunch. She also receives a half day of services on Saturday. She receives two sessions of each of the following: speech, occupational, physical and recreational. She handles therapy sessions much better when Ed and I are not in the room.

To be perfectly honest, this break from Meaghan allows Ed and I to focus on either work or the mountain of paperwork and documentation we are accumulating regarding Meg's care. The break gives Meg, Ed and I an opportunity to miss each other and get refreshed. That's a difficult thing to admit let alone commit to writing.

I came across something that brought me comfort:

He leads us on by paths we did not know;
Upward He leads us, though our steps be slow,
Though oft we faint and falter on the way,
Though storms and darkness oft obscure the day;
Yet when the clouds are gone,
We know He leads us on.
He leads us on through all the unquiet years;
Past all our dreamland hopes, and doubts and fears,
He guides our steps, through all the tangled maze
Of losses, sorrows, and o'er clouded days;
We know His will is done;
And still He leads us on.
Nicholaus Ludwig Zinzendorf