The Long Sleepless Night is Over

Good morning!

I thought I would write to let you all know Mackenzie, Michael, and Mariana survived their all-nighter!

Mackenzie did have her EEG yesterday. Since Mackenzie seems to have a gift for explaining her medical procedures, I will let her give you the details later. I just wanted to let you know we will receive the results of this test at her follow up visit on June 10.

We still do not have any concrete information from NY. We are trusting the Lord for His timing. Seems His plan for us right now is to wait. . .

I was thinking about how we as humans HATE to wait. We turn times of waiting into times of worry or times of trying to figure out how to manipulate the outcome, somehow making what we are waiting for come more quickly. I don't think this is how we are supposed to wait.

A friend of ours, who is also waiting for her surgery in NY, sent me the following words from Chuck Swindoll:

The hand of God holds you firmly in His control.
The hand of God casts a shadow of the cross across your life.
Sit down at the foot of that cross and deliberately submit your soul to His mighty hand.
Accept His discipline.
Acknowledge His deliverance.
Ask for His discernment.
Then be quiet. Be still. Wait.
And move over so I can sit beside you.
I'm waiting, too.
It does not depend on the man who wills or the man who runs, but on God who has mercy. Romans 9:16

So, for now, we will try to be quiet and still and wait. Thanks for waiting with us!

Love,
Lisa

All-Nighter

Hello everyone! Tomorrow is the EEG so I am not allowed to sleep for 24 hours straight! I was sharing this detail with our friend, Mariana, who offered to come over and pull an all-nighter with me! So Mariana, Michael (my brother), and I are planning on no sleep tonight! We are filling ourselves with junk food, playing games, and watching movies! We were talking in Grandma's kitchen and eating cookies... Mariana and I got a hold of some black pens and gave Michael a makeover!

I hope you all have a great night and get a lot of sleep! Thanks for all the prayers! The specific prayers for Thursday are that the EEG will show what needs to be shown!

Goodnight with love,

Mackenzie

Yum.... Barium!!!

Just a quick note to tell you how the modified barium swallow test went today: It was delicious... Just kidding! When we were taken to the room, I saw a woman preparing "food." It looked like she was squirting toothpaste in it! There were a few other people in the room that helped her, and they were all very nice. They seated me in the machine and pulled the x-ray machine by my side. Then a speech pathologist fed me the "foods" of various consistencies while someone took the x-rays. I was "fed" barium mixed with water (by a spoon, straw, and cup), barium mixed into butterscotch pudding, barium on top of fruit, barium on a cookie, and then a last sip of barium in water. Sounds delicious, doesn't it? The pudding was extremely gross and had a difficult time going down. It felt like swallowing glue! In the report it says there was "retrograde flow noted with pureed solids (pudding)." Other than that, it was not too bad! It was pretty disgusting tasting, but it didn't last long.

This was taken while swallowing liquid barium:

This was the "retrograde flow" of the pudding:

Next thing on the schedule is a phone conference with Dr. Bolognese. We are still unsure of when this will be, but it should be either tomorrow or Friday. We will let you know as soon as we hear anything. Yesterday, mom got a call from the surgery scheduler who reassured us that I had not been forgotten and that she would call at the beginning of next week to set a date! Yay!

Thank you again for all of your comments, support, and prayers!

Mackenzie and the Mathis family

News from New York

Good morning!

We apologize for our delay in posting, but there really was no reliable news to share until now.

Next week, we are scheduled to have a phone consult with Dr. Bolognese, the neurosurgeon in New York. He is reviewing all of Mackenzie’s information, her new upright MRI, and her symptom list. From that review, he will formulate a treatment plan and explain it to us next week.

She is having some new symptoms, for which she will have further testing done here in Spartanburg. I am going to give you the dates because we ask you to pray—pray especially that these tests will reveal any abnormalities that are causing her symptoms. Here are the dates and tests:

Wednesday, May 20th—Modified barium swallow to assess her swallowing function. Over the last month or so, she has become unable to swallow pills.

Thursday, May 28th—EEG—this is a two hour test to check for seizure activity. The neurologist feels she is having what are called absence seizures, which are episodes where she stops and stares. It is as if she just “checks out” for a few seconds at a time.

Both the swallowing issues and seizure activity are common in people with the conditions Mackenzie has. Evaluating them by testing will be helpful as the doctors refine her treatment plan.

I must tell you these weeks of waiting have been long, but we do trust there is a good purpose for the wait. We want to ask the Lord to tell us His purpose—Why did we have to wait, Lord? What did You accomplish during this month, Lord?

I read this week in When God Weeps by Joni Eareckson Tada that when we ask, “Why?”, we probably really don’t want the answer. Would it help us if God told us, “Well, this person’s faith was strengthened, Mackenzie needed these new tests first, your e-mail to so-and-so was necessary, etc.? Joni proposes all we really want when we ask, “Why?”, is for God to scoop us up and tell us, “It’s going to be okay! I’ve got you!”

Let me tell you, He has told us that over and over—“It’s going to be okay!” We don’t know how, we don’t know when, we don’t know what, but we do know God is in control.

Thank you for checking this blog faithfully. Thank you for your words of kindness and support. Thank you most of all for praying.

We will post again after the tests and phone call next week.

Love,
The Mathis Family

Still waiting . . . on the Lord

Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for Him." The Lord is good to those whose hope is in Him, to the one who seeks Him; it is good to wait quietly for the salvation of the Lord. Lamentations 3:21-26

I wanted to send a quick update to let you all know we have not heard anything from NY regarding a new surgery date.

I know you are all praying and wondering--so are we! We are thankful to know, however, that we are waiting on the Lord, not on surgeons. And in the waiting, He has shown us much grace and peace.

Mackenzie continues to go to school a few hours every day, and we also still go to physical therapy, although they are now just working on pain management rather than strengthening exercises.

Thank you all for praying. We will let you know as soon as we hear anything!

Love,
The Mathis Family