Nate Update from His Daddy

This update is from Tuesday:

"Please pray for Nate. After having an echocardiogram today, it has been determined that Nate has an infection at the end of the central line that goes into his heart and it is believed that he now has a heart infection. His heart rate and blood pressure are both high. This is very frustrating, please pray that the infection is cleared without any heart damage. We know God hears our prayers and we thank you for continuing to pray. We will know more in the morning after speaking to the oncologist, infectious disease, and cardiology. He also spiked a fever today and his mouth is very nasty with lesions in it all over.~ Wes"

Nate Updates

9/22-from his Mommy:

"Jake's surgery went as planned for the bone marrow harvest. Jake is an amazing little man. He was laughing with Wes and Luke while waiting this morning. He was so calm and visited with the doctors as they put him to sleep for the procedure. We and I are so proud of him and the strength God has given him. He has been throwing up from the meds. He will spend the night in the hospital just for routine observation and pain control. Nate is currently getting the transplant. It is about a four hour process to infuse the new marrow. He has been dealing with the effects of the chemo and in the coming days he will be dealing with the side effects of transplant as well. The doctors have let us know that the week or two after transplant are usually very difficult days. Today has been a very emotional day as we have traveled back and forth between Jake and Nate's hospital rooms, but to quote Nate's doctor,"today is a blessed day." So many days we weren't sure if we would make it to this point, and although it is not over we rejoice for the opportunity to continue this journey. Love to you all!!!!" 

9/23-from his Daddy:
"Jake is out of hospital, a little sore, but doing great. Nate is suffering from lots of side effects from the chemo and the transplant (we knew it would be rough). His blood pressure is running high, he has off and on fevers, he has another infection in his line, he itches all over, his skin is bright red with dark red and white splotches all over, he twitches terribly and shakes in his sleep which is hard for him to do, his rear and mouth have sores all over them, and he has severe mucositis which is a crazy condition where from your throat to the inside of your intestines produce extra mucus because you have no immune system and it causes you to literally poop bright green liquid snot and blood frequently and makes it very difficult to talk, on top of all that he can't eat because he is nauseous. Even with all of that going on he has a good attitude and laughed at a clown who performed through the shield for the room and got down and did his physical therapy and played very good today. Nate wants to make it, I have never witnessed anyone with such a will to live. God is great and has done so much in our lives, we are so grateful. Thank you for all of your support and prayers. Please continue, we know that is what gets us through each day. Nate will understand all of this one day and will know that so many people took the time to love him, he already knows to some extent, but we will always make sure that he knows that many have loved him and much love should be shown by him to his LORD and to the world. Thanks-Wes."

Nate Update from Tuesday

"Nate update today was the big day for transplant. Thanks for all the prayers and to God for making this possible. Please pray for both Nate and Jake. Big brother helping little brother forever. Jake came out of two hour surgery nauseous and wore out and has been throwing up and asleep most of today. Nate has been getting the five hour transplant since 1pm Pacific time. He is steady and they have lots of people gathered around him. So far all is okay. The next 14 days are critical to make sure his body accepts Jake's cells and starts to produce his own. Until then we have been warned to see Nate go through lots of crazy side effects. Thanks for the continued prayers. I will keep all informed."

From Connor's Mommy

 

Tuesday, September 21, 2010

Suffering.  I've come to the conclusion that suffering is the hardest teacher there is.  Suffering teaches difficult lessons that are hard to understand; hard to grasp.  Yet, once you've learned them, they are not easy to forget - they are forever cemented in your brain, and forever imprinted on your heart.
 
I've learned to deal with what I felt was broken promises.  After Connor's second diagnosis, a friend gave me a book on Psalm 91.  This Psalm has many promises of God's protection.  It is beautiful.  I would read it every night over Connor while he was sleeping, hoping these words would stir God into action.
 
"He will rescue you from every trap and protect you from deadly disease.
He will cover you with his feathers.  He will shelter you with his wings.
His faithful promises are your armor and protection...
If you make the Lord your refuge, if you make the Most High your shelter, no evil will conquer you; no plague come near your home.
For he will order his angels to protect you wherever you go.
They will hold you up with their hands so you wont even hurt your foot on a stone...
The Lord says, 'I will rescue those who love me.  
I will protect those who trust in my name.'"    vs. 3-4, 9, 12
 
After Connor passed away, I couldn't even read these words.  To me, it represented broken promises.  How could I reconcile Connor's death with these beautiful promises?  I struggled with this for a long time, and my teacher, Suffering, has showed me the real truth behind these verses.  There is something more important to God than protecting us from physical harm.  His agenda is Kingdom advancement.  Nancy Guthrie explains it well.
 
"While he cares deeply about us and the physical pain we experience, he cares far more about our spiritual conditions.  He knows that these bodies of ours are wearing out and will someday die.  It's our souls that he is most concerned about.  Jesus knows we have a hard time grasping this more significant spiritual reality.  And, so in our everyday requests for safe travel and physical health, and in our more desperate prayers for healing or deliverance amid great difficulties, we try to apply to or bodies God's promises of protection that were intended for our souls.  And when we do, we're often left disappointed.  Until we value the eternal life of our souls more than the temporary life of our earthly bodies, we will continue to feel disappointed with God.  God has not promised wholesale physical deliverance in this life for those who place their faith in him.  But he has promised to protect our souls for eternity.  And really that is so much bigger, so much better."  
 
I admit that although I agree with everything Nancy said, I still struggle to remember it sometimes.  The pain of losing Connor often takes my attention away from the truth.  I'm wondering how many other people have been disappointed by these seemingly "broken promises", too.   If you have felt this same disappointment, remember Jesus on the cross.  When I think of his sacrifice, I can't be angry with God for not rescuing Connor the way I wanted him to - ways that are limited by my earthly perspective.  I can't continue to believe that His promises of protection weren't kept.  Everyday, I'm reminded that those promises weren't meant to protect me or Connor from anything that threatens our comfortable existence in this life.  They were meant to rescue our souls for eternity.
 
Always believing,
Joy Cruse

More Nate Updates

9/16 Update from Wes:

"update on Nate, today he woke up and falls to the left when he tries to sit up or walk in his walker, hopefully this is temporary and a short term side effect of chemo and nothing more, thanks for the continued prayers-Wes"

9/18 Update from Jackie:

"Nate has one more day of chemo. He doesn't seem to be falling or leaning as much today. He had a ct scan last night just to check for anything that could be causing this and it looked fine. It is thought at this point the falling and weakness are related to the chemo and all the meds he is getting right now. He is weaker, but overall is doing well.

Thank you for praying for our sweet friend Ryan. He passed away on Tuesday. Please pray for his family and for God to comfort them during this sad time. He was a bright light in this world and he will be missed deeply by all who had the privilege to know him."

Need the Prayers!!

We're not real sure as to what has happened, but the seizures have gone crazy.  The first 14 days of the month, I had nineteen seizures total (average of 1.4/day).  In the last three days, I have had sixteen (average of 5.3/day)!!!  Seven of them were yesterday and I've already had six today.  I just don't get it.

I am worn out...Please just be in prayer that we can either determine the cause OR that they will miraculously disappear and stay gone forever!!!!!  Please, LORD!!!

Thank you, prayer warriors!!!

Yesterday's Nate Update from his Mom

This is from Wednesday.  Sorry that I am late posting it:

"Nate is completing day 3 of his chemo. He is doing very well overall. Please continue to pray as he is now 6 days from transplant. Jake seems to feel very confident and calm about his role as the donor. I am asking God to continue to give him this amazing peace.

I also wanted to ask that you all pray for one of Nate's little friends in Dallas, who is not doing very well right now. His is name is Ryan. I know we have prayed for him before, please lift him and his family up in prayer. One more request, a young man who found out yesterday he has brain cancer, please lift up Chris Jarvis and his family. Thank you all so much!!!!!!"

An Update

First, I must say that you are all so precious!  I have received so many e-mails asking me to post an update on how I'm doing...I guess I think y'all would be sick of hearing and so I don't mention it.  However, enough of you have asked me to post more often.  So, I will try...

Second, WOW on the replies to the baby stuff post.  Y'all are rockstars!!  I received comments, e-mails, etc.  So much to consider!  Thank you!!!

Finally, the update:

I'll start with the Praise!  The longest I've ever gone without a seizure was seven days.  That was last month.  The next longest was five days & that was at the end of May (pregnant).  Before that, it was four days.  So, we are seeing progress!  The four day seizure freedom was prior to the pregnancy.  The rest has been while we are pregnant.  So, we are seeing how this precious little girl is such a miracle in more ways than one!!!  To the praise:  I went eight days without a seizure!!!!!  Thank you, Lord!  It's amazing how much I'm able to accomplish when I'm not having seizures.  Energy returns and apparently I do, too!

We were able to rearrange a lot in the house this weekend to make room for our little miracle!  Her room was stuffed to the brim as the "catch-all" room and so we had to find a new home for all of that.  We seem to have made it work.  Now, we just need to decide how we are going to decorate her room!

Here is "good lookin'" putting her crib together:

Mom bought this for us a few years ago when a local baby boutique was closing...

This is about as close as he was going to get of a picture of me that day!!

Conpleted Crib

The first gift ever from her Daddy is just hangin' out, waiting for her!!

To get back to the question you have all asked...
It is such a blessing to go that long without seizures.  Yet, they started back up today.  I had some in my sleep with Charley Horses.  Then, I had some throughout the day.  I'm at three seizures for the day & three or four Auras (the docs say these are still seizures, but they are less intense & so I don't count them as such).  We have no idea what the triggers could be...we have found that physical activity, standing, and reading are triggers.  I always go to the grocery store on Mondays and so there is quite a bit of physical activity, standing, and reading (love my coupons) that takes place at the store.  However, I also had a doc appt.  Then, after the appt, we went to a few stores to see if we could find ideas for her room.  So, I was standing most of the day.  Could that have been the trigger for all of today's seizures?  No idea...

I definitely get spoiled to all of the seizure free days, though!!  I love it!!  So, please join us in continuing to pray that God will perform a mighty miracle and heal these seizures!!!!  Please, LORD!!  We trust that you can do this!  We want YOU to get all the glory, LORD!!!

I'll try to post more soon....

Update from Nate's Mommy

"Everything is in place for Nate to start his conditioning for the transplant. He will be getting very high doses of chemo over the next 6 days. Tuesday, September 21 is still set for transplant day. He has adjusted well so far to life in the transplant unit. Please pray for him and for continued strength for our family."

Top 10 Must Have's-Do You Agree?

We are starting to do some baby shopping and are super overwhelmed!
So, all you expert Mommies, we need you!!! We found this Top 10 list of Must-Haves!

Is it true?
Do you agree?
What would you say that you can't live without?
****************************

Top 10 New Mom Must-Haves No One Tells You About

Forget what you’ve read in the baby books -- we go beyond the basics and get right to the good stuff.

You’ve read up on the best strollers and the safest car seats, and have stock-piled enough onsesies and diapers to last a lifetime. But when it comes to all those not-so-obvious baby essentials, sometimes no amount of prebaby planning will prepare you for the items you didn’t know to ask about. But don’t worry -- we asked for you. Read on as moms who've been there dish on all the baby essentials they didn’t know they’d need but couldn’t have lived without.
1. Gripe Water
Why you need it: First, let us say we hope you never have to deal with colic. But sorry mama, chances are you might. And when baby’s up wailing in the middle of the night and nothing will seem to soothe her? Trust us, you’ll wish you had a bottle of this stuff on-hand. So stock up early and grab a liquid dropper. Both will come in handy during teething time, too. Try Wellements Grip Water.

2. Fisher-Price Ocean Soothe and Glow Seahorse
Why you need it: A soft and cuddly stuffed animal that encourages baby to sleep? Genius. Which is probably why so many moms love it. Just lay baby down, turn the seahorse on, and back away from the crib slowly… The seahorse will light up, play a five-minute ocean track softly, and gently fade to silence as baby falls asleep. Bet that’ll be the best 14 bucks you’ve ever spent. (Toys R Us, $14)

3. The Ultimate Crib Sheet
Why you need it: There's no getting around it -- changing crib sheets can be a pain in the butt. Especially in the middle of the night if baby's spit up or had a diaper explosion and there's no waiting that one out until morning. Which is why so many mamas love The Ultimate Crib Sheet. Here's why: It's a sheet and matress pad all rolled into one, with the top layer wicking away moisture, spills, and anything else that may come into contact with it. Plus, the top layer is see-through, so you can fit your favorite sheets below to still see its cute pattern, but only have to take off the top layer when you need to wash it -- leaving the sheet below untouched. Amazing! (BuyBuyBaby, $20)



4. Air-venting bottles
Why you need it: Baby gas is no walk in the park. And the pain and uncomfortability it brings along with it can make your little guy not just more irritable, but also less likely to sleep through the night… and that’s no fun for you or him. When you’re registering for bottles, do yourself a favor and go with one that has plenty of air-vents. A bottle with a specially designed venting system will help cut down on the excess air baby takes in when he drinks, thereby cutting down on gas. Plus, they also help with colic. Our picks? Try Dr. Brown’s bottles (Toys R Us, from $10) or BornFree bottles (Target, $22.99).


5. Sophie
Why you need it: Because there will come a time when you will do just about anything to make baby's teething pain go away. Let us introduce you to the miraculous healing powers of Sophie, the giraffe teether. She's made of natural rubber, food paint, and no toxic gunk whatsoever, which moms love. But why does baby love her so much? Jury’s still out on that one. Maybe it’s because her chewable appendages stick out every which way, making her easy to chomp on; or that she squeaks when you squeeze her and seems to be the perfect size for baby’s Kung-Fu grip. Whatever the reason, one thing’s clear: Her miraculous ability to keep baby happy (and silent) makes her a definite must-have. $22, The Land of Nod


6. A Glider
Why you need it: In those first few months with baby -- when it’s time for another middle-of-the-night feeding and you’re running on three hours of sleep and sheer will -- trust us, you’ll be happy you chose a good glider for the nursery. They’re not just perfect for feedings, but also nice to have around if you want to rock baby to sleep, read him a book, or pass out in yourself when you can’t quite make it back to your own room. Which one to choose? Check out the Dorel Baby Rocking Chair Bundle (Walmart, $170).


7. Nursing pillow
Why you need it: Newsflash: Breastfeeding isn’t always easy. And it ain't always so comfortable, either. Enter the nursing pillow. Its U-shaped and cushy design makes it nice and cozy for baby to lay on during feedings (not to mention helps her latch better), but also takes a load off your arms and helps prevent back pain (score!). Which one’s best? Moms swear by the Boppy, but we’re also big fans of the (very aptly named) My Brest Friend. (Boppy: Target, $30; My Brest Friend: Amazon, $45).


8. A travel chair
Why you need it: It’s no secret that babies and restaurants don’t always mix. But at least there’s one invention that will cut down on the chaos when dining out with your little one – the travel chair. Fixing itself easily onto the side of any dining table, you can store a travel chair in the back of your car. While it's perfect for restaurants, it's great for those trips to Grandma’s too.
Moms love: Phil & Ted’s metoo travel chair, $50


9. A swaddle blanket
Why you need it: Ah, the swaddle blanket… comforting babies (and saving the sanity of moms) everywhere for centuries. By wrapping baby up snuggly, you’ll not only help her self-soothe, but also ease her off to sleep faster, since being swaddled will remind her of her days back in the womb. And a calm, sleeping baby is always a plus.
Moms love: The Miracle Blanket (because yes, it actually works miracles), $30


10. Fisher-Price Rock N' Play Sleeper
Why you need it: Maybe it's the position the Rock N' Play hammock allows baby to rest in or the gentle rocking that's created when you turn it on... whatever the reason, babies seriously love the Rock N' Play. And so do moms -- especially ones with babies suffering from colic, acid reflux, or chronic fussiness. (But don't just take our word for it: Seems like the Rock N' Play is fast becoming a Bumpie-approved favorite, too.) Interested? Order one now through Amazon ($60).

-- Kaitlin Stanford

Update from Nate's Mommy

"Nate is currently in the hospital again, but we are considering it a blessing. His line had another infection in it. After the surgeon removed it on Friday she told Wes and I that it was actually cracked. We are thankful the line was removed before he started his BMT chemo. This could have complicated things very badly. Nate is scheduled to have a new line placed on Wednesday and then on Thursday be transferred to the Bone Marrow Transplant unit. His conditioning will start on Sunday. He will be getting very high doses of chemo. He will have two days of rest before the transplant, which is officially scheduled for Sept. 21. We are excited because we know this is why we came to California, but we are very aware that this is going to be a very intense time for Nate and our family.We are praying for Nate's body to be prepared for the transplant and to be a success. We are also praying for Jake's surgery on the 21st to go as planned and for Jake to make a speedy recovery. As with all BMTs, Nate will be in isolation for at least 6 weeks in the hospital. During this time our family will have to wear masks, robes, gloves etc, while in the room with Nate. When he is released from the hospital we will still be under strict contact precautions. He will wear a mask for many months. I feel so blessed to be able to share with this group and know that we are united with prayer warriors all other the world.
Everyday we have with Nate is a miracle and I know he has touched so many people. We were talking to Nate's doctor the other day and he told us Nate's treatment here as already given medical information that can help other kids in the future. We are praying this unique transplant will do the same. Thank you to our team of prayer warriors!!! We love you!"

Monday Info on Nate

Sorry this is late.  I missed this post from Nate's Mommy on Monday:

"Nate went in for labs today and his counts are trending upward. We are thankful for this and pray for full recovery quickly. He got out of the hospital on Friday and has enjoyed being with his brothers. We were so blessed tonight to watch Nate in his walker along with a group of kids here at the Ronald McDonald House, run and play hide and seek. Nate was yelling and laughing with excitement and we looked on in awe of our God who has given this child such strength and joy.
We have received so many cards, emails and packages since we have been in California. I read Nate every card and he knows so many people around the world are praying for him. Over the last month I have not sent out thank you cards, and I must confess I have gotten confused at this point. Those of you who know me will not find that surprising :) Wes and I are humbled and pray for all who are on this journey with us. Thank you for the encouragement and love you all have shown to us in so many different ways."