Monday, January 21, 2008

Back to "normal" - you could say that

I can see when we have had visitors to Emily's Updates and I feel so bad that I haven't put anything up to read. So, here we go:

We've been getting back into the swing of things, but as it goes - when you're away from something things aren't always the same when you return. I've wanted to post a lot about our stay on Hopkins, but I'll say these two things for now.
  1. We have two allies that are Attending Dr's in the PICU now: Dr. Swartz and Dr. Nelson. Both of these incredible ladies where great. They talked through things with us and met us where we needed them to for Emily's sake. Dr. Swartz even said something to me that made my heart skip a beat... for joy. "You know, we don't see kids as sick as Emily was getting better this fast. I can't believe you guys are already going home! I am really excited about this protocol we've used on Emily and I look forward to trying it out on other SMA kids that are under my care here in the PICU. " WOOOOOHOOOOO!!!!! Thanks so much, Dr's Swartz and Nelson, for working with us and for being willing to use the documentation from Dr. Schroth in Emily's care. I am so glad the timing was right for you to see how well it all worked with Emily. Our SMA kids are amazing and, when cared for appropriately, can "go home early."
  2. The nurses and RT's were awesome! We, of course, have our favorites, but all-in-all those staff members did an incredible job. We can be a little crazy to endure when fighting for Emily's life, but we managed to develop some valuable friendships with some of the staff there.
Other than that it's been back to the grindstone. I'm back at work full-time, Annabelle's back into her school routine, and Diana is busy at home managing Emily's care. There is so much to do with Emily that Diana is thinking about not taking her college courses this Spring, but we'll see how things go.

Something else I've been putting together is SMASpace.com. It is a product of our up and coming nonprofit, Eminnea Inc., but I sensed a need for a social networking site in the SMA community, so I opened it up and people are using it. We already have nearly 100 users. Feel free to check it out if you'd like to -- and tell any SMA families you come across about it.

Please continue praying for Emily's health as we try to outlast the respiratory season. SO MANY SMA kids have been in the hospital, or they are now, with RSV and other horrible respiratory illnesses. Many lives of SMA kids have already been claimed this season by various respiratory difficulties brought on by viruses like RSV... it's very sad. We managed to get through this one, but there is more to the season. Please also pray for us all as we try to get back to the "normal" things in life -- work, school, marriage, friendships, etc. They all suffer during our difficulties -- sometimes badly. Thanks for your support.

Peace <><

11 comments:

Anonymous said...

I just caught up on reading comments and was pleased to find that many of the Belhaven High Scholars folks (students and teachers) have left messages. You are difinately in our hearts here on the Virtual Campus. Glad there is a little "normal" in your lives. Aunt Mari

Aimee said...

The word 'normal' has changed for us, too...thank you so much for stopping to ask about Mac in the store yesterday - it was a real pleasure to meet you and a true true pleasure to 'get to know' your family through this site. (here's the hope for Emily I had been thinking of - I knew it sounded familiar - an MLD child like our Mac) http://www.hopeforemily.org
Our children are God's gifts to us...to love and hold and care for...each day is a blessing - and one day closer to cures.

Talk to you all soon!
Aimee, Brian, Mac, Colin and Stover Murray

www.caringbridge.org/visit/cormacmurray

StellasMommy said...

Just checking in on you guys. Hope things continue to go well! We understand when you talk about the daily stresses due to SMA . . . it stresses every aspect of your lives some days and it's hard to get back on track. I think we'll all be feeling better about things once we get out of this horrible winter season. Hang in there! Hope we get to meet sometime!
Hugs,
Sarah (Stella's mommy)

Aiden's Mommy said...

It has always amazes me that no one hears of SMA until their child is affected and then it takes over their lives. People comment on the all the things that we have to do as part of their care but it's normal for us now. We can only hope to teach people about the disease and get awareness out there.
We are so glad that Emily is doing better and getting back to normal.
Aiden's Mommy Dawn
www.caringbridge.org/visit/aidenbundy

Bug said...

normal... what is normal... :) Im glad Emily is doing great and that you have all gotten back into the norm. We will always hold you all in our prayers!!! Hugs Sheila and Sky

Climbing for Christ said...

Just wanted to let you know that we are praying for you!

hjoy said...

So glad things are back to "normal" for you. We sure know how that goes, for us normal just means not sick or in the hospital. Daily crisis are part of normal.
Such a blessing that you found docs willing to listen and change some things to help other children with SMA. God bless.

Rick said...

Nathan, I just met your dad this week in his new capacity as interim pastor for a church in our presbytery. My wife & I are PCA missionaries to Uganda but recently returned due to health concerns with our 11 month-old son. Our little boy has since been diagnosed with a brain malformation & an uncertain prognosis. Our 5 year-old son was born without radius bones in his forearms or thumbs on his hands. So far he's had 10 reconstructive surgeries & is doing well. We also have a 2&1/2 year old son with no special needs. Though none of our children have anything life threatening like SMA, we know firsthand the heartache of parents loving their special needs kids & the importance of being their chief advocates in the medical system. Your posts brought tears to my eyes, but also warmed my heart with a father's love that so wonderfully reflects our Father in Heaven's love. Thanks for your faithfulness in the journey He has you, Diana & your children on. Your candor & faith bring much glory to God. Sending up a prayer for Emily & you all. In Jesus Who So Loves the Little Children, Rick Gray (& for my wife Wendy too)

Shanna in Port Orchard, WA said...

Nathan & Diana,
I'm praying for you and your family. May God bless you in ways that seem impossible, because He is able.
-Shanna

Bug said...
This comment has been removed by the author.
Bug said...

Hi Guys I was just stoppen in to see whats new... and no news is good news in my book :) Big hugs to all of you Sheila and Sky