Monday, November 3, 2008

Atlanta


Nathan and I sat on the couch in our hotel room tonight decompressing from the day of travel. He was going to town on his paci; I was trying to go over in my mind the things I wanted to make sure to talk about at tomorrow's appt with Dr. Shoffner. It has been a long few months, and Nate's medical history is so long and expansive that I know I am going to forget certain questions. I rubbed Nathan's pudgy little thigh and my heart sunk thinking about the scar that is going to be on that thigh from now on.

I have written on here before about it being hard to know which tests to run in this search for a diagnosis for our son. Him having a muscle biopsy done is a very invasive test, and it has been very difficult at times to know what to do regarding this test...

Our neurologist brought up the muscle biopsy quite a few months ago, but quickly dismissed us needing to do it at this time. At a later appt, he said brought it up again but also said that he didn't think we needed a muscle biopsy, so we brushed it aside as a distant thought. Before last month's appt with him, we didn't know what we should do regarding more testing for Nathan. He was having a great few days before the appt, and when he looks good, our worries are low. I prayed so hard before that neurology appt that if we needed to search more for whatever is wrong with Nathan, that the Lord would open a door for us.

My neice Hailey had been born just a couple weeks prior to this appt and we had updated our neurologist on her abnormal metabolic newborn screening test, so he decided to look at all of Nathan's abnormal bloodwork and abnormal organic and amino acid levels...I think this was the first time he had looked at everything together. He came in the room with these abnormal levels written on a scrap sheet of paper and brought up that it was time to have a muscle biopsy if we were willing.

The Lord opened a door for us.
Nathan has had a rough month in regards to weakness, sickness and GI issues, but he has had a great week this past week. He has had a REALLY great week. He looks so strong and healthy right now. I have doubted this move to see Dr. Shoffner and have a biopsy done all week. Was this the right thing to do? We are putting our son through surgery, and he is looking so good right now. What are we doing? Sure, he has other quirky things constantly going on, but look at him! He looks so good. Why are we doing this?

When the pediatric surgery center called last Friday saying that their anesthesiologist would not do the surgery anywhere except a Children's hospital, I thought it was a way out. "Would a hospital do it on the same day?" I asked, and was told that they didn't know...I would have to be in contact with Dr. Shoffner's office. I prayed so hard that if it wasn't the Lord's will that Nate have this biopsy, that he close this door for us. The door looked halfway shut already...maybe we were too hasty to begin with. Nathan looks so strong right now.

10 minutes later, I get an email from Dr. Shoffner's office manager saying that we were moved to CHOA at Scottish Rite...at an even earlier time than previously scheduled.

The Lord opened a door for us.

We are in Atlanta and a bit nervous about tomorrow. Nathan has a metabolic test from 9:00-10:00, we see Dr. Shoffner from 11:00-1:00, and Scottish Rite called today and said that we have to come there for pre-op for Nathan from 1:30-2:30. I ask for your prayers for tomorrow...that Nathan can endure the long day; that the doctor will be given wisdom and understanding regarding Nate's case; that we can have clear heads and energy throughout the day. I hope to update tomorrow night.

15 comments:

Anonymous said...

Nathan is in our prayers. We love you all.
Love, The McCook's

Lynn on November 3, 2008 at 10:12 PM said...

Though I don't know you personally, I enjoy reading your blog and the updates on Nathan. I will say prayers for him and your family. Blessings!

MJ on November 3, 2008 at 10:52 PM said...

You have many many prayers, Amber! Lots of love from Ohio!

Christine on November 3, 2008 at 11:22 PM said...

My thoughts and prayers are with you all right now. Please please let me know if there is anything i can do!! I will bring you dinner, a book, a margarita...whatever ;) Hugs girly!! Hugs little Nate Man!! We are prying for you!!!

Caroline on November 4, 2008 at 7:29 AM said...

Dearest Amber. My prayers all day will focus on Nathan as well as the election! May God be with both you and wee Nathan in a powerful, peaceful way. Love, Carolyn Hisel

Amanda on November 4, 2008 at 8:14 AM said...

Our prayers are with you, Jay and Nathan today and especially tomorrow. We love you guys.

Amanda on November 4, 2008 at 8:37 AM said...

Many prayers Amber....

Jill Chandler on November 4, 2008 at 9:14 AM said...

We are praying for you guys throughout this day.
Love, Jill and kiddos

His Mercy Endureth Forever on November 4, 2008 at 9:35 AM said...

All of you are in our prayers. May the Lord grant Nate the comfort he needs and the Doctors the wisdom to help Nate!

Jade Cook on November 4, 2008 at 10:03 AM said...

I'm praying for you guys Amber. I pray you will remember all your questions and everything important that doctor tells you. And that Nathan and you stay strong throughout the day, and that the doctors will find more answers. Hang in there!

Dani on November 4, 2008 at 10:24 AM said...

Praying hard for ya'll today.

Anonymous said...

You are in my thoughts and prayers. Hugs to you.

Linda

Bekah on November 4, 2008 at 12:56 PM said...

You are all in my prayers today.

~sydney~ on November 4, 2008 at 1:02 PM said...

Nate continues to be in our prayers here in Mississippi. We love you guys!

PS That is such an adorable picture of him and Sherrie! ;)

Anonymous said...

You are right! The Lord opened doors...You are in wonderful hands at Scottish Rite and with Dr Shoffner! Praying for the next two crazy days.
Michelle17 (p2p)

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