Yesterday was a busy & fun day...


I had a bunch of errands to run.  So, B dropped me off where I needed to be for those.  Then, we had a doc appt.

We got to see our sweet girl again!!

 Peek-a-boo!!  Just in time for Halloween!!

 B says she's wearing her skeleton costume!

For those of you, like me, that have no idea what I'm looking at on the ultrasound screen, this is her face (sideways-eyes to the left, mouth toward the middle of the screen)!

She is doing very well.  The doc said that she weighs 2lbs 2oz.  That is just so hard for me to believe!  Our little girl is 27 weeks (almost seven months), only 13 wks to go...doc says she is measuring right on schedule.

Then, we went and picked up some of the fabric for her room!  A precious friend that I grew up with is making her bumper, crib skirt, etc.  I need to find out if I can post her info on here for those of you that may want to be blessed by her talent, as well!!

After dinner, we went to the RHS football game!  Boy was it cold out last night.  We are guilty of leaving a little early, but the boys won!!  We watched the Stingerettes and then watched the boys come back and score.  Then, we had to go...it was just too cold...Brrrrr!!  

Here we are before halftime with Congressman Hall.  Have you voted yet?

Finally, we won't get to see many Trick-or-Treaters tomorrow night.  B's b-day is next weekend.  For his big day, Mom got us tickets to.....

THE WORLD SERIES!!!!!!

We will be on the 1st base side, foul line, about six sections down from the dugout!!!  We are so excited!!  Go Rangers!!!

Update from Nate's Mommy

"Nate is now 36 days post transplant. He had an MRI and PET-Scan this week, both tests showed good results and no new developments. The doctors are very pleased with the results so far. He is getting stronger everyday and I have decided Jake and Luke are the best medicine for him. He gets so motivated when they are around and has shown improvement after just spending a few hours visiting with his brothers this week. He is now almost off of all IV medication and most of his meds are being taken orally. This makes him one step closer to being released. He is taking in more calories each day, but isn't where he needs to be yet. Thank you for your continued prayers. We are so thankful that Nate is doing so well. Please keep praying for his full recovery and for all the kiddos who are fighting this battle. Much Love, Jackie"

Bellies & Puppies!

I must thank each of you that takes the time to pray for us!!  After I posted last week, the seizures backed off a bit.  In the first 19 days of the month, I only had 10 seizures.  This is the best EVER!!!!!  Praise the LORD!!  In the next three days, I had 15 seizures.  It was so yucky!  However, in the last four days, I've only had two.  I'm still having auras.  Those need to disappear, as well.  They just don't knock me out as badly as the seizures do, though.  So, please keep those prayers coming and thank you!! 

Now, on to the little girl!!!

I always thought I would take belly shots throughout a pregnancy.  I'm just not there, though.  I can't quite bring myself to do it.   However, when you have family in different states and they are all requesting pics, somethings got to give...

So, this is my best effort at belly pics.  K & I grew up together and she is about a month ahead of me.  This was at her baby shower.  In this pic, I'm about six months prego...

It's hard to believe that we are getting so close to our sweet little girl arriving.  We only have about 13 weeks until her due date!  WOW!!!

Since I know that my belly isn't the last image you want in your mind, here are some much cuter pictures to put a smile on your face.

Anyone for a belly rub?!?!?!

Time For an Update

Sorry that I have not updated.  You can see that I'm just not that great at staying on top of the updates.

October has been one of my best months ever and this last week was wonderful.  However, something went crazy on Tuesday.  The seizures started coming back and Wednesday they were full speed ahead (I had 4)....it's so frustrating.  I've already had three today before noon.

I'm not real sure as to what the trigger would be...I have been completely off my seizure meds for over two months!!!  I've had fewer seizures on no meds and doing the Ketogenic Dietary Therapy (and being pregnant with our sweet little girl), than I had on high dose meds or anywhere in between.  So, we are so grateful that the Lord allowed us to find this nutritional approach.

We are continuing to pray for wisdom that we are able to see what the triggers could be...

Thank you all for being such incredible prayer warriors!  We love you!

Baby Stuff

Okay, more questions for the Mommy experts out there:

Do I really need to wash all of her clothes in something like Dreft?  Or, can I use our regular detergent?

 


Pacifiers?  Bottles?  Nipples?  etc.?  What have you found to be the best?  What do you look for in each?

 

Thank you!!  We tried registering the other day and it was so overwhelming!  So, I need the advice of the experienced professionals out there!!

Thank you!

Update from Nate's Mommy

"Nate is three weeks post transplant this week and he continues to do well. He is getting a little stronger everyday. The test they did last week showed that Nate's bone marrow is now 100% Jake's, which was the goal. We were thrilled by this news. He still is not eating or drinking so he is getting all his nutrition by IV. We are really trying to encourage him to start taking things by mouth as this is important for his recovery and release. We are encouraged by his daily improvement and pray this transplant was the cure for Nate and for others in the future. Thank you for the continued prayers and love for our family. Much Love, Jackie"

From Connor's Mommy

Monday, October 11, 2010

Suffering, the great teacher, has also taught me to try to look at the situation through a heavenly perspective.  It's only normal that we should look at everything through earthly eyes, but there is so much more to be seen.  We often do not recognize God's bigger picture or plan.  As we were studying Mark 8 :31- 33 in Sunday School, this became so apparent.
 
"Jesus began to teach the disciples that the Son of Man must suffer many things and be rejected by the elders, chief priests and teachers of the law, and that he must be killed and after three days rise again.  He spoke plainly about this and Peter took him aside and began to rebuke him.  But when Jesus turned and looked at his disciples, he rebuked Peter. 'Get behind me, Satan! You do not have in mind the things of God, but the things of men.'"
 
Pretty strong words.  I was trying to think of the words that Peter may have said to Jesus, like...This is your great plan?  You came to earth to die?  Why don't you just take over your rightful authority on the throne?  You are the King of Kings, so use your power to rule here on earth.  There has got to be a better way. Why does there have to be a cross?
 
I have to admit that I've asked some of those questions to God 
myself.  I sensed the same frustration in Peter that I have felt.  
This was your great plan for Connor?  There's not a better way?  
Wouldn't Connor serve you better if he had lived?  I've offered many different scenarios that seem a lot better than this one.  But, I can just hear God answer  me, "You do not have in mind the things of God, but the things of men."
 
We often think that Victory has to be won through strength instead of weakness, military might rather than selfless surrender, self promotion instead of sacrificial submission and humility.  I'm sure that was how Peter saw it, but I'm sure his perspective changed when he and John arrived at the empty tomb. I wonder if that was the AH HAH moment for Peter.  Or was it when Jesus appeared to the disciples that same night?
 
When I think of Connor, I wonder if I will have that same clarity this side of Heaven like Peter did, or will the clarity come once I've entered the gates of Heaven.  I pray that whether answers come this side of Heaven or not, I will continue to cling to my faith and hope in Jesus Christ.  Like Jesus said in John 21:29, "Because you have seen me, you have believed; blessed are those who have not seen and yet have believed."  I pray that I will focus on the things of God and not the things of man.
 
"Since Jesus went through everything you're going through and more, learn to think like him.  Think of your sufferings as a weaning from that old sinful habit of always expecting to get your own way.  Then you'll be able to live out your days free to pursue what God wants instead of being tyrannized by what you want."
I Peter 4:1-2 The Message
 
Always believing,
Joy Cruse

From Nate's Mommy

"Nate has had a good week. His counts are continuing to trend upward, which is a good sign of recovery. The next big step is for him to start eating and drinking again. He is only taking sips at this point. His legs are very tight and weak because he has been in bed for several weeks and has gotten such intense treatment. Our prayer is for him to continue to get stronger everyday and make progress in these areas. Of course there is always the concern for infections and complications from the transplant, but he seems to be doing really well overall. We continue to be amazed and inspired by all the support for our family and Nate. Much Love, Jackie"

Nate Update

Thanks to everyone for the continued prayers for Nate. The doctors treating Nate have been very pleased with his progress following the stem cell treatment. Tomorrow Nate will undergo a test to make sure that the cells have grafted like they are supposed to. His counts continue to improve daily and symptoms continue to improve as well. Please continue your prayers for Nate that his improvement would continue and the tests would go well.

Nate Update

9/29 Update from his Mom:

"The doctors have decided to give Nate some meds in his line that would possibly get rid of the infection, so he can keep his current line. He really needs to have a central line to get all his meds, it would take many IVs for him to get everything he needs. He will have another echocardiogram on Thursday morning. They feel confident the antibiotics he is on currently are addressing the infection. We are praying that the test tomorrow shows the infection gone, as well as Nate's heart in good shape. The doctors increased his pain meds and he has really felt some relief. He is sleeping a lot, but we are very thankful he isn't hurting so much. Thank you for your prayers!!!

Nate is not the only one, please remember all these kiddos who are so sick and the doctors and nurses who care for them daily."

9/30 Update from his Mom:
"The echocardiogram showed that the growth on the end of Nate's line is gone. We are very happy that he will be able to keep the line. He also has a white count starting. It is very low, and he is still very sick, but I am celebrating each small victory!!! He seems to be on track at this point. Today is a good day!!!"

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