Friday, July 27, 2007

The Best Says...

We are already recieving the best care in regard to Colin's ear. Turns out, our doctor spent a few years training with the doctor here in the Bay area, who said he really felt that our current ENT doctor has done an excellent job. He had a few recommendations for further revision but really thought that we were on the right track. It's good to have a professional affirm that we have made a good decision in regard to our choice in doctors. It has brought some peace of mind.

The kids are having a blast and I have a ton of pictures that I'll post once we return. It has been a busy, fun, busy, exciting, busy, busy week.

Tuesday, July 17, 2007

In 6 months...

We will have another MRI of the total spine conducted. That was the conclusion of today's call from neurosurgery. Nothing has changed drastically, which is great. The syrinx (fluid-filled cavity in the spinal cord) has not increased in diameter, which is great. But, it is still rather long, which is concerning for a possibility to retether. So, we will continue to watch for signs of retether and monitor it again by MRI in another 6 months. Not bad, not great...but not bad.

Happy Birthday, Colin!

Happy Birthday to my boy! The past 7 years have flown by. I can't imagine a life without you. The day you were born was the most significant day of my life. I spent our first evening alone, after everyone went home, examining your little fingers and toes. It was completely amazing to me to see all of the traits of your Daddy, who I loved so much, on my little tiny baby. You had his exact toes, just littler, his exact fingers, just littler, his exact leg shape and nose, all just littler. So amazing. I am so proud of everything you have already become. You are my life, my heart, my everything.

Do you know how much I love you? I love you more than the stars in the sky, more than the fish in the sea. I love you more than anything or anyone, anywhere.

Happy Birthday, sweet boy!

Thursday, July 12, 2007

My boy is a rock star!

Arrived at the hospital at 6:45 this morning to prepare for sedation for the MRI. The full spinal MRI can take hours and, obviously, a 6-year-old isn't normally expected to be able to lie completely still for the amount of time needed to retrieve the pictures.

Colin's tears over the last few days haven't been over the MRI itself, but the sedation. The sedation used is slightly different that that of surgery and for whatever reason usually nausiates him, which is odd because the surgery sedation usually doesn't (usually).

He asked me, in front of our nurse, why he had to be "put to sleep." The nurse explained the need to lie still and Colin responded that he could do that. So, they let him give it a try. If you've never had an MRI, here's a quick explanation: You lie on a bed that slides into a really tight tube. The entire time they take pictures the equipment makes sounds that reminded me of mack truck jake breaks and honking mack truck horns times 50. The sounds continue the entire time...you have to remain completely still or they have to repeat the process for adequate pictures.

Colin did it!!! They plugged his ear, prepped him. Told him to relax and rest if he could. I am so proud and was so relieved! They didn't have to repeat a single image. I watched him the entire time...he flinched at the first sound and after that stayed completely still. Although, he admitted after the fact that he wiggled his toes once and opened his eyes twice. :) What a relief. Even the technicians were amazed. What a big boy. I sat there watching the entire time contemplating if I thought that I could have laid there that still. My conclusion: Probably not. He never ceases to amaze me.

Praying hard for the results to come quickly and to show, well...nothing.

Wednesday, July 11, 2007

Tuesday, July 10, 2007

Bye go the carefree days of summer...

Thursday will end our "carefree" summer months. I work hard to avoid scheduling appointments/procedures/surgeries in June and July. It's important to me to give Colin a break from it all...shoot...to give all of us a break from it all. So after over a month with nothing more than dentist and regular pediatric checkups, we head to Children's Thursday for a full spinal MRI. They will be looking to see if his cord has re-tethered and how it has healed internally. They'll also recheck the neck bones to look for increased fusion and to make sure that the bones are not compromising his spinal cord. Please pray hard for Colin that all is well.

Up until a week ago I was confident that it everything was well. From the date of surgery until last week -- over 6 months -- we were completely bed wetting and urgency free. Last week, we had two major bed wetting episodes and he has been "running" to the bathroom more. Amazing how a little pee can make a mom's mind turn. I have been working hard at trying not to think about the negative possibilities of anything to do with GoldenHar syndrome...to be honest...I have been failing.

The break from appointments in nice but returning is always hard...and returning with the first one an appointment with anesthesia makes it even more rough. He is dreading it and it brought him to tears yesterday. I hate this for him...I wish I could endure it all in his place.

Last fall rocked our world. After YEARS of running through lists of could happens, we were slapped with many that did happen in a matter of months...

I used to look forward to appointments. One more thing I could check off the list...one more appointment we'd made it through without any of the things that "could" happen. Now, I seem to be anticipating "routine" checkups months in advance. My mind has been filled with worry about the future and I can't seem to get my thoughts to avoid the negatives. It makes for long nights.

Saturday, July 07, 2007

God said..."I'll lend you my child..."

I'll lend you for a little time a child of mine, He said ...

For you to love while she lives ... and mourn for when she's dead. It may be six or seven years, or twenty-two or three, but will you, till I call her back, take care of her for me? She'll bring her charms to gladden you. And shall her stay be brief, you'll have her lovely memories as solace for your grief.

I cannot promise she will stay, since all from Earth return. But there are lessons, taught down there, I want this child to learn. I've looked the wide world over in search for teachers true, And from the throngs that crowd life's lanes, I have selected you.

Now ... will you give her all your love ... nor think the labor in vain? Nor ... hate me when I come to call ... to take her back again?

I fancied that I heard you say ... “Dear Lord, it will be done! For all the joy Your Child shall bring, the risk of grief we'll run. We'll shelter her with tenderness. We'll love her while we may, And for the happiness we've known ... forever grateful stay.

“But shall the angels call for her much sooner than we've planned, We'll brave the bitter grief that comes ... and try to understand.”*

I will spend the rest of my life striving to give my children everything that Alivia's parents managed to provide to her in just over 2 years. There are many thing in this world I struggle to make sense of and this has been added to the list...

Sweet peace, sweet Livi.



(*author unknown)

Friday, July 06, 2007

Please, God! Heal Alivia.

1 John 5:14-15 tells us, "This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us -- whatever we ask -- we know that we have what we asked of him."

Please pray for Alivia. She has been moved to intensive care. I know that many who read this don't know her. It does not matter. She is a baby; she is sick; she needs healing. Please pray for that. Nothing short of a miracle will do.

My heart is aching for their family. Please, God.