Saturday, April 16, 2011

Back in the ring

I wrote a blog post late last night, but then deleted it. Have you ever done that? I wasn't sure how much I would like it/be glad I wrote it in the morning. I think I would have been okay with it. It went a little something like this.

All of Price's tests from Duke came back normal. Every single one. Even the one we repeated. The doctors said if we lived there, they would ask us to come back to the clinic, look at Price again, and see if they missed anything. No thanks. We were there for four days, all day long. I think he was evaluated pretty thoroughly.

We had an appointment with a mitochondrial disease expert here in Houston yesterday. We don't think P has mito as he is not the typical case, but our neurologist said we might as well check it out. It took awhile to get in to see her, and yesterday was the day.

Our appointment was at 2:30 and we didn't get to leave the clinic until 5pm. That's a whole lot of waiting in a tiny, white room with no toys. A student came in first to do an intake. She was very friendly and Price took right to her. In fact, Price met a milestone right there in the room during the intake. He got himself up on all fours for the first time ever. This sweet girl is doing her intake and Nathan and I are staring at P with our mouths wide open, cheering him on. We even were taking pictures. She must have thought we were crazy.

The doctor then came in and was very pleasant, but she definitely did not impress P. The first thing she did was wave a stuffed animal in front of his eyes to assess his tracking abilities. Really doc? He could have cared less about that stuffed chicken. She then went on to tell us that whatever they would be testing Price for now would be very, very rare diseases/syndromes. She also said that they would not be treatable and that the prognosis would most likely be poor. She continued on to tell us that she could understand why we wanted to know what he has as it could have reproductive consequences for us or for our other kids. But mainly, she understood our desire to know if we would be caring for P for 10 years or 50 years.

Now, N and I are not in denial. We know there is a great possibility we will be caring for Price his entire life. We have gone there. But, to tell us this after having known P for 2 minutes was just wrong (especially the part where she assumed his shortened life span). I wanted to sweep my baby up in my arms and run right out of that room. Except I couldn't because there were 4 med students hovering around the door like we were some science experiment.

We didn't do any of the testing she recommended yesterday. We were done. Price was done. We just didn't have it in us. We felt like we had gotten back in the ring, ready to fight again and we were just not ready.

We definitely have decisions to make. Price is doing so well. The fact that he met a milestone during this awful appointment was not lost on us. We are enjoying this boy and oh, how we love him. He has taught us more about heaven then we could have ever imagined.

I have been on the verge of tears ever since the appointment, feeling fragile. The Lord allowed me to run into a sweet, wise friend today at Nordstroms while trying on some jeans (this might have contributed to my tears..ha). It was definitely not a coincidence and was yet another reminder of how He is with us through all of this. He is always faithful. We are dissapointed when we say "Amen" and the miraculous healing has not taken place. We are dissapointed that we have never found the answers after countless tearful prayers and begging and pleading. We are dissapointed when a doctor speaks painful words to our already tender ears. But, He remains faithful and good and we will continue to praise the One who loves P much more than we do.


sing1997 said...

He will never leave us or forsake us. I love you, sweet momma, and though I've never gotten the privilege to scoop him up in my arms, I love P too.

Jess Lonergan said...

I love you K & am so impressed with you. It is so evident that the Lord is shining through you and giving you the strength for each day.

Love you sweet friend & love Price too!

cindy gatewood said...

As always, these posts melt my are so trusting in
the Lord and I am so proud of you!
I can't imagine how you do the
things you do! I also can't
imagine life without Price..
he is definitely in the right
family!His parents are amazing!
(spoken like a Mom)
Love you-

Sherry said...

Kristen, you are definitely your mother's daughter. You both have such great faith. Nathan too!Love your posts. You make me want to be better. Luv you!!!!!!

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