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

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."

Another Nate Update-WOW!!!!

"Please report that final report is clear, no cancer. Amen, praise God. Right now have everyone pray for #s to rise quickly so we can start. The day his #s rise high enough, he starts so it could be any day. Wes Oxford"

Nate Update

"Because many are wondering, here is the update so far. All tests have come back clear so far. The final cultures will be in by Monday. Please continue to pray, God bless. Many great things continue to happen, let's keep praying. Wes Oxford"

From Connor's Mommy

Thursday, August 26, 2010

Suffering has also created in me a special yearning for my Heavenly Home.  I think we all have a sense of Heaven, but suffering brings Heaven to the forefront of our hearts and minds.
 
Even Connor had a special yearning for his Real home. In the spring of '08, Connor informed me that he wanted to go home (as we're sitting in our family room).  I said, "We are home, silly".  He said, "no, my real home.  God is my Heavenly Father, so Heaven is my real home."  I said, "You're right, but are you really ready to go home now?"  He smiled and answered, "not yet, Mommy.  I'm not ready yet."  At the time, I wondered if that was some kind of foreshadowing.  I was praying that it wasn't some kind of warning or preparation that God was using to get me ready for Connor's home-going.  As I see it now, God was preparing Connor's heart for his eternal home.
 
Tait and I often said that Connor always knew that he was just passing through this place on his way HOME. He never slept in his own room.  He slept with MacKenzie when he was really young and then Carson when he got older.  He gave his money to Carson to put in his piggy bank, so they could share their money.  He never collected baseball cards or special items.  He would always give them away.  Connor and Carson shared their clothes and closet.  I think the closer he got to his Home-going, the more he yearned for it and had a true sense of it.
 
Carrie Underwood has a new song out, called "My Temporary Home".  From her lyrics, I can tell that she gets it, too.
 
Little boy, 6 years old
A little too used to bein' alone
Another new mom and dad, another school
Another house that'll never be home
When people ask him how he likes this place He looks up and says with a smile upon his face
 
"This is my temporary home
It's not where I belong
Windows and rooms that I'm passin' through This is just a stop, on the way to where I'm going I'm not afraid because I know this is my Temporary Home."
 
Young mom on her own
She needs a little help got nowhere to go She's lookin' for a job, lookin' for a way out Because a half-way house will never be a home At night she whispers to her baby girl Someday we'll find a place here in this world
 
Old man, hospital bed
The room is filled with people he loves
And he whispers don't cry for me
I'll see you all someday
He looks up and says "I can see God's face"
 
"This is my temporary Home
It's not where I belong
Windows and rooms that I'm passin' through This was just a stop, on the way To where I'm going I'm not afraid because I know this was My temporary home."
 
This is our temporary home.  Thank you, Lord, for making it possible for us to have a permanent Home with you in Heaven.
 
Always believing,
Joy Cruse

Prayers for Nate from his Daddy

"Please pray for Nate tomorrow morning he is having both a lumbar puncture and a bone biopsy to check for any cancer. If there is any, then treatment is over and we go home. This is the final step before transplant can be done, which should start on Monday. This has been a long road and we have to make this hurdle to get to transplant. Thank you for your prayers and we know that God is with us. Wes Oxford"

Update from Wes on Nate

"Praise God for HE is an awesome God. The final report on today's MRI is clear, no detectable cancer in the brain or spine. We rejoice in this and thank all of you for the prayers. There are a couple of twists the doctor told us today that we have to overcome before proceeding with the transplant. The first is Nate's numbers have to recover and relatively soon. He has been at an overall number of 0, essentially a very low immune system, for over a week now. If it were not for the fact that he is on heavy antibiotics continuously here in the hospital to clear his infection, he would not be able to fight off other infections at this time. He received so much chemo a couple of weeks ago to get rid of the brain cancer that it wrecked his immune system and counts. We are getting into a very dangerous area if it does not come up by this weekend the doctor said. The other hurdle is the need for a clear lumbar puncture, which can't be performed until his numbers come up. The lumber puncture is what caught the cancer last time, without a clear one, treatment halts and we could go home. I know that was a lot to say, but for today the fight stays on track and we have much to rejoice in. I have to be honest, I was worried about today. Nate had been complaining about things he had complained about in the past that showed up on MRIs as tumor, but God had mercy on him and us. I have a strong belief in the abilities of God, many times I am confused on why and where all of this is going but I know that HE is the one in control. I know we have a long way to go and possibly might have to go through things that have never been attempted before, but I feel at peace today and I truly stand in a healthy fear of the LORD, for all of us are in HIS hands and HE can choose to do with us as HE pleases whether we realize or accept it, and as odd as it sounds, that is just fine with me because I believe HE has some awesome things in store ahead and this is all just part of the plan. May you find strength in knowing Jesus as your friend also and not just your Savior, you will need HIM one day to help you in ways that no one else can, God bless you all. Wes"

Prayers for Nate from his Daddy

"Tomorrow, the 17th, is the big MRI. If it is clear then treatment goes on, if it is not then we go home. Thank you for all the prayers and support you all have given us. Please gather with us and others and cry out to our loving father in heaven and ask for another miracle regarding Nate. Lately he has been showing some symptoms that indicate disease progression, but we know that this is all in our LORD'S hands and HE can do anything. Today please wherever you are say a prayer for Nate that he is clear of disease and will live a long life on this earth showing others what GOD can do. I pray also that no matter what your circumstance in life is right now, whether high or low, you find peace and understanding in the scriptures that our LORD has given us and ask guidance from the giver of all good things our savior Jesus Christ. May God be with you, Wes."

8/14 Nate Update

"Nate was admitted to the hospital yesterday with a fever. He needed two transfusions along with antibiotics. His fever has not broken yet. His blood work does show he has an infection, if the fever continues they will add in another antibiotic. Please pray for his counts to recover quickly and that this will be a short stay. He has been feeling very good and was sad when he realized he had to stay at the hospital."

It's a...

Today was our follow-up visit with the high-risk OB.  I didn't want to find out boy/girl sitting in the room with doc.  So, B had a great idea:

He got a cute little bag with babies on the front, blue & pink tissue paper, & swatches of blue & pink fabric.  We gave the bag to the nurse and told the doc we didn't want to know while at the appt.  So, they were just supposed to put the right color fabric in the bag and wrap it for us!!

So, doc did the Ultrasound and our baby is very healthy.  Weighs about 5 oz.  Baby's brain, palate, heart, spine, every other organ, etc., all look great!!!  Praise the LORD!!!!

Isn't our baby precious?

When we got in the car, we couldn't decide what to do...do we just sit in the truck & open the bag?  Do we go somewhere special?  Then, my unbelievable hubby & our little baby's amazing daddy had an idea.  He started searching in his phone and then started driving.

As a kiddo, Mom always had me dressed in Chocolate Soup outfits.  It's a kiddo clothing store that is just adorable!  Anyway, B pulled up in front of Chocolate Soup (I didn't know there were even any of these stores still open) and said we could get our baby it's first outfit!!  Isn't he already a wonderful & super creative Daddy?!

B opened the package.  They had a card wrapped up.  So, he gave me the card.  I opened it, and this is what we saw:

The tears immediately started flowing...

We did get her a cute little outfit.  However, she already has her Daddy wrapped around her little fingers.  He saw this pink puppy and carried it through the store snuggling with it.  He put it back on the shelf once.  It drew him back in, though.  Daddy couldn't help himself.  He had to spoil his little girl!!!  ; )

This is the picture that we sent to our parents to let them know about their granddaughter!!!

Our little girl's new puppy from her Daddy!

He told me that when we got home, I needed to hear the song that he had for his daughter.

Here is the video!  Make sure you pause the music at the top, on the right hand side of the blog.

The Lyrics to Daddy's Little Girl:

I recall the night that you came into this world.
I couldn't believe the doctor when he said: 'It's a little girl.'
I said: 'Now Doc, you must be wrong. You see I want a boy.'
Then he laid you in my arms and my heart sang with joy.

(Daddy's Girl, Daddy's Girl,
(I'm the centre of Daddy's world.
(I know I'm Daddy's number one,
(For he loves me like I was his son.
(Daddy's Girl.)

I recall the day I took you to a baseball game.
You brought along your baby doll and half its' baby things.
We sat there a-playin' house, while the Dodgers played the Braves.
And ev'ryone in the bleachers looked at us as if to say.

(Daddy's Girl, Daddy's Girl,
(I'm the centre of Daddy's world.
(I know I'm Daddy's number one,
(For he loves me like I was his son.
(Daddy's Girl.)

I recall the day I took you on a fishin' trip,
You said: 'Daddy won't that hook hurt the fishes' lip?'
And you said if they don't get air, those things in the can will die.
So we turned the worms all loose and chased some butterflies.

(Daddy's Girl, Daddy's Girl,
(I'm the centre of Daddy's world.
(I know I'm Daddy's number one,
(For he loves me like I was his son.
(Daddy's Girl.)

I recall the day that your young man come to call.
Seems like only yesterday, you swam and played football.
But I know the time has come, that I must set you free.
But no matter where you are, you know what you are to me.

(Daddy's Girl, Daddy's Girl,
(I'm the centre of Daddy's world.
(I know I'm Daddy's number one,
(For he loves me like I was his son.
(Daddy's Girl.)

(Daddy's Girl, Daddy's Girl,
(I'm the centre of Daddy's world.
(I know I'm Daddy's number one,
(For he loves me like I was his son.
(Daddy's Girl.) 

The other song that he said he likes for his little girl is this one!!  It doesn't start until about the 22 second mark....

The lyrics to It'll Come Back:

On our little girls third birthday,
She got a sandbox, In the backyard to play.
Sand was everywhere as she play and she laughed.
I busted her, For it killed all the grass.

It'll come back, It'll come back
Daddy don't be mad, God and the rain will bring it back.

When our little girl, Just turned ten,
She got a bike to ride with all her friends.
She skinned both her knees, as she played and she laughed.
I busted her. For it killed all the grass.

It'll come back, It'll come back
Daddy don't be mad, God and the rain will bring it back.

When our little girl, Turned seventeen.
We built her a pool, In the backyard that spring.
All her friends came and they swam and they splashed.
I busted her, For it killed all the grass.

It'll come back, It'll come back
Daddy don't be mad, God and the rain will bring it back.

My wife and I sit on the porch alone.
As I look out across at my beautiful lawn
The house is quiet, There's no children at play.
And I say to my wife.
"Honey, If you'll listen real close, You can still hear her say..."

It'll come back (It'll come back). It'll come back (It'll come back)
Daddy don't be mad, God and the rain will bring it back.
It'll come back (It'll come back). It'll come back (It'll come back)

From Connor's Mommy

As I get older, I have become more and more aware of the fact that SUFFERING is such a major part of the world, of this fallen world.  I know that may seem to be a funny statement, but I think that as a child we are always of the mind set that everything is rosy and life is full of fairy-tale endings.  But now, I see that life is also filled with life stories that don't match up with these fairy tales that I so often imagined as a child.  It doesn't match up when a one year old, Walker Rainey, passed away from cancer yesterday.  Or when my friend's husband left her and her children last year.  So many of my friends have lost their jobs, too, and are struggling to support their family.  The list goes on.  At one time, these everyday trials surprised me, as if they were not a normal part of life.  Now, I'm no longer surprised.  Just as Peter said...
 
"Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you.  But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when His glory is revealed."
I Peter 4:12-13
 
So, now I'm trying to understand what good can come from suffering.  
How can God's glory be revealed?  Dr. David McKinley, our friend who is a pastor in Augusta, Georgia, has this perspective on suffering.
 
"Suffering forces us to turn from shallow distractions and smaller irritations to consider the ultimate issues in life.  It helps us get our eyes on something that really matters.  Too much of our time is spent worrying about things that don't' matter.
 
Suffering is the great purifier of the pettiness that often consumes us in life.  One of the reasons some of us never develop into PEOPLE OF GREAT CHARACTER is because we constantly give our attention to the petty things of life.  Commentator George Will says 'pettiness is the tendency of people without large purposes.'  If you live with a larger sense of purpose, than you're not going to let your life be burned up by all the little things that really don't matter.  This is the spiritual gift of pettiness and pouting.  If we ever lose sight of what we are about for eternity - in preaching the gospel, in seeing people redeemed, and helping people who suffer to have a hope and a heaven that is yet to come - then we miss everything that really matters in life and we focus on all the wrong things.
 
That's why Peter says here, "you are tested in the genuineness of your faith, so that it is more precious than gold."
Your life needs to count for more than just the petty trivialities that so often consume us.  So suffering in life matters."
 
I saw this very principle worked out in our lives.  When Connor was first diagnosed, our lives were immediately simplified.  No longer did we worry about the small things.  It was like our mind/energy and focus were all wiped clean and we only had what was important set before us.  So, I agree with Pastor McKinley that suffering is the great purifier.  I pray that we can all wipe away all those petty trivialities and focus on what really matters in life - what we are doing for God's Kingdom.
 
Please pray for two families who have lost their children to cancer recently - Walker Rainey's family and Carlin Ascher's family.  Thank you.
 
Always believing,
Joy Cruse

MD Anderson update

Just a quick update for y'all as we are headed home.  We will be sure to do a more thorough update once we return home.

Bottom line, B is STILL CANCER FREE!!!!  Praise the Lord and thank you to everyone for your continued prayers!

Nate Update

"Nate is currently getting one more round of chemo before the transplant. He has been in the hospital since Monday and will finish chemo on Friday. The doctors feel strongly that we need to make sure this newest development in his brain responds to chemo prior to transplant. He will have a break next week from chemo (as always still many doctors appts). The following week the brain scan along with the lumbar puncture will be repeated. If he shows a positive response then we will proceed with transplant. As I have said before this treatment is built around Nate, so things do change often. Thank you for your continued prayers and support!"

MD Anderson

Just a quick request for all of your prayers!!

We arrived this afternoon at MD Anderson for B's six-month follow up visits.  As the wife (especially the pregnant wife), these visits always make me a tad nervous!  We know the Lord can heal HIM just as quickly as he did last time, but we prefer for the cancer to never come back...EVER!!!  Please, Lord!!

So, he goes back any minute for his scans.

We have my follow up with the neurologist tomorrow.

We come back Friday morning to get B's results.

So, precious prayer warriors, please lift up my man to the Lord that he is still Cancer FREE!!  Thank you for always being such amazing prayer warriors!!

We love you all!

Nate Update

"The final results from the MRI have been written and Nate has some new tumor in his brain, the lumbar puncture also showed cancer cells in his spinal fluid. Nate's team of doctors met today to discuss what would be best for Nate at this point. We have two options, proceed with the transplant and make some adjustments to the chemo or go home. We are planning on moving forward with the transplant. I wish you all could see him laughing and playing. Today we went to the park after his doctor appointment, he and Luke were looking for the ice cream man. Nate was saying, " Oh Mr. Ice Cream man come out,come out where ever you are." Then he got mad when I wouldn't let him play on the playground by himself. These things are not special in anyway, but served as a gentle reminder to me that he is still a regular 4 year old boy. Also, some of you may be aware but mailing address has changed to room #30 Oxford Family 4560 Fountain Ave Room #30 Los Angeles, CA 90029. Please pray for wisdom and strength as we move forward."

Praises for Nate!!

"Nate's doctor just sent Wes an email and the preliminary results from the MRI are CLEAR!!!! We are very excited and thanking God for the good news. Nate still has two very important tests that are checking for tumor. He has a biopsy tomorrow and the date of the PET scan is unknown. We will not get the biopsy results for several days, but I just wanted to share this good news today.
We have been lowering the dose of his pain medicine gradually and he seems to be doing well. Yesterday Nate looked and felt so good, I asked him how he was feeling. He said, "mommy I don't hurt anywhere." It has been months since he has been totally free of pain.
We have many tough days ahead and this battle is far from over for Nate, but today we are rejoicing! Love to you all!"

Message #2:
I wanted to let everyone know that there is now a Pray for Little Nate and a Pray for Little Nate 2, Facebook group. This second group was created because the first group had a messaging limitation of 5,000 members. FB does not allow updates to go out once it is over 5k people. The second FB group, Pray for Little Nate 2, will mirror the first group. Please tell anyone new wanting to get updates on Nate to join the 2nd group and the same update will be sent as on the 1. Thanks for all of your continued prayers and thoughts for Nate and the Oxford's.

Nate Update

"Nate's doctor called us this afternoon and he is pleased with the results from Friday's scans. They weren't totally clear, but there seems to be logical reasons for the spots that showed on the scans. This was the first of three tests. He will have an MRI next Tuesday and then a marrow biopsy and lumbar puncture next Wednesday. These will complete the tests that are checking for remaining tumor. We are thankful that the scans seem to be good and the doctor feels we are still on track for transplant next month. In the mean time, Nate is having a series of tests checking his organ function as he approaches transplant. We are staying busy with doctor appointments and tests. He is finally gaining weight and healing well after last week's surgery. Thank you for your continued prayers!!!!!!"

What is a Miracle?

It's what we've been praying for..

It's something man can't accomplish on his own...

Miracle-An event that appears inexplicable by the laws of nature and so is held to be supernatural in origin or an act of God.

Truly, when people have asked us how to pray, our answer has been, "pray for a miracle!!"

When we were at the Mayo Clinic, one of the docs we saw in endocrinology told us that my hypothalamus and pituitary must be working just fine (there was a concern that they were not, which is why we were referred to him).  He told us that the way he knew this is because we were pregnant.  He told us that pregnancy is a miracle in itself.  For every little hormone to release at just the right time is quite a miracle.  Thus, if mine wasn't working properly, we wouldn't have become pregnant the first time we weren't "careful" or possibly at all.

So, we praise the Lord for this miracle that HE has created inside of me.  WOW!!

Part 2:

Due to this sweet little miracle, I have struggled to eat much at all.  Since all of my food has to be weighed on a gram scale and eaten within a certain amount of time, this can't keep happening.  I have struggled most to get my proteins.  So, we found out about Whey Protein.  My dietitian at Mayo recommended it and my PCP agreed.  However, the day I started eating it, my seizures increased and I became sick.  I ate it the next three days at lunch.  The first 13 days of the month, I had 13 seizures (avg 1/day).  In the three days that I ate the Whey Protein, I had 21 seizures (avg 7/day)!!!!!  Why the increase?

Well, I received an e-mail from a parent on the Ketogenic Forum with a list of all of the "other names" that MSG (aka: glutamic acid) can have...one of them is Whey Protein!!  So, we decided no more whey protein.  

In the meantime, I checked the mail and had a letter from the Mayo Clinic.  This letter included my labs.  While at Mayo, my full antibody panel had not made it back.  However, it is back now...

My GAD-65 (Glutamic Acid Decarboxylase) should be <= .02

Mine was 4,415!  Yes, you read that correctly...four thousand four hundred and fifteen!!!!

There was a description beneath these #s that stated:

"it is consistent with organ specific neurologic autoimmunity and predisposition to thyrogastric disorders, such as thyroid autoimmunity, pernicious anemia, and type 1 diabetes."

Hello, I have an autoimmune thyroid condition and we've been asking how this could play into all of this since Day ONE!!!

I put a call in to my neurologist at Mayo today to see what his take was on all of this...he called back this evening to tell me that he had just sent me a letter telling me about his findings.  He spoke with my other neuro and a neuro-oncologist.  They said this means that I have a Paraneoplastic Antibody
which can lead to limbic encephalitis of the temporal lobe.  It can cause cancer and so he wants me to stay on top of mammograms and pelvic exams to continue to rule out cancer.  Though he said that having made it this far without any cancer cells is good news!!

The neuro-onc that he spoke with said that the truth is that treatment is usually best upon onset of the disease.  The fact that we are 4.5 years out could work against us.

The way they treat is through immuno-therapy:
1. high dose steroids
2. IVIg (Intravenous Immunoglobulin)
3. Plasma exchange (plasmapheresis)

He doesn't believe that any of them are safe during pregnancy.  So, as long as I'm not having any generalized seizures, he wants to wait until after the baby is born.  The doc that would be doing the procedures said that 4.5 yrs into this could be too late to treat it.  However, I asked what role pregnancy could be playing...

He said that since pregnancy causes immunosupression that could be why I have had fewer seizures since pregnant.  The hope is that it will continue...he said that after delivery the seizures would probably increase.  However, that could be the "new start" that we need for the treatment to work...

His final statement was, "As I told you, it's rare that we ever have a reason as to why seizures start.  However, I think in your case, we might have an answer!!!" 
 

WOW!!  The tears are flowing again as I type this!!!  PRAISE JESUS!!!  God, YOU are the Hero!!!!

I couldn't stop the tears or stop from saying, "Praise Jesus," as he was telling me this.  Can you believe it?  He thinks we have an answer!!!  As well, this precious miracle growing inside of me, could be the miracle we need to restart my immune system so that the treatment may work....WOW!  Thank you, Lord, for our miracle that we have been praying for...!!

He wants me to come up after the baby is born and start IVIg treatments...Praise the Lord!  Could we really be seeing the light at the end of the tunnel?  Could this precious baby, this Miracle, be the Miracle we need for healing, as well?

Only the Lord knows, but we are holding out hope that this will be HIS miracle!!  God gets to be the HERO of this story!!!  Praise HIM!!!!

Nate Updates

July 16th Update at noon:
Nate has had a very intense week. Wes and I have had several conversations about how strong and determined our little guy is on a daily basis. Things have not gone exactly as planned, but we are still on track. The treatment is built around Nate's response so we change as his body does or does not cooperate. He has a pet-scan today. Please pray for great results. The doctors are looking for any tumor that may still be on the bones. God always takes care of our needs. We have a friend in town this week and she took care of Jake and Luke so they did not have to endure the long days at the hospital this week. We appreciate her so much!

 July 16th Update at 10pm:
"We will not get scan results until Monday. Praying for good news!!!!" 

From Nate's Mommy

"Nate is going to have his line placed on Tuesday and should have his stem cells harvested after that. The doctors are taking Nate's cells just for back up. The plan is to transplant with Jake's marrow. Jake should be harvested soon after Nate. We are still continuing with tests in preparation for the transplant next month. Nate is feeling great and has a good energy level. He is struggling to keep his weight up right now. He has lost weight and it is somewhat of a concern since we know weight will be an issue during transplant. The last couple of days he has started to eat more and we are praying this trend continues. We are happy with the progress and are continuing to pray for God's hand to be on Nate and the doctors. We are thankful for the support and prayers that we feel during this time. We are continually amazed by the love that we are shown by family, friends, and strangers. We have had an opportunity to meet some wonderful people here at the Ronald McDonald House. We all have a different story but share the common bond of a sick child. I am constantly reminded that even in the middle of our storm we are not alone and there are many who face similar pain and uncertainly, but God is holding us all. I pray you all have a blessed week and see God's grace and mercy each day."

From Connor's Mommy

"Before The Morning"
Lyrics By Josh Wilson
 
"Do you wonder why you have to
Feel the things that hurt you
If there's a God who loves you where is He now
Maybe there are things you can't see
And all those things are happening
To bring a better ending
Someday somehow you'll see you'll see
 
Would you dare would you dare to believe
That you still have a reason to sing
'Cuz the pain that you've been feeling
It can't compare to the joy that's coming
 
So hold on you gotta wait for the light
Press on and just fight the good fight
Cause the pain that you've been feeling
It's just the dark before the morning
 
My friend you know how this all ends
You know where you're going
You just don't know how you'll get there
So say a prayer
And hold on cause there's good for those who love God
But life is not a snapshot
It might take a little time but you'll see the bigger picture
 
ONCE YOU FEEL THE WEIGHT OF GLORY
ALL YOUR PAIN WILL FADE TO MEMORY
 
It's just the hurt before the healing
Oh the pain that you've been feeling
It's just the dark before the morning"
 
I've been trying to sum up how I feel about Connor's first Anniversary of his welcome to heaven.  I've been listening to this song for months now and it expresses both the pain I feel and the hope I have in Christ.  As July 10th approaches, Tait and I have been remembering the days that led up to Connor's passing.  These memories mainly consist of Connor's pain and suffering.  It's like reliving it all over again.  But then, it was like Connor spoke to me and said "Mom, I'm not like that anymore.  I am not suffering or in pain.  Don't put yourself through that misery anymore.  You're going through unnecessary pain, because those days are over for me.  Why put yourself through that?"  
 
So, I'm taking Connor's advice.  I'm focusing on the morning or the dawn.  I'm focusing on God's promises to restore joy to our lives. "The sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us"  (Romans 8:18.). Our pain and struggles are very real, but they are only the dark before the morning.
 
It's like what Pastor Graham said at Connor's service.  "Don't trade what you do know for what you don't know."  I don't know why this had to happen to Connor.  Why did he have to get two cancers by the age of 8?  Why did he have to die?  I may never know those answers this side of Heaven, but I do know a lot of things about God.  He loves us, He will never leave us, He died for us and He prepared a place for us in Heaven for those who love Him.  I will choose to focus on what I do know and the dawn.  Someday, I will see Connor again and God's glory will be revealed to me.  That is the promise I'm counting on.  Until that day, I will fight the good fight until I see His face, like Connor would have wanted me to.
 
"I will turn their mourning into gladness; I will give them comfort and joy instead of sorrow.
Restrain your voice from weeping and your eyes from tears, for your work will be rewarded.  So there is hope for your future, declares the Lord."                
                                                                        Jeremiah 31:13 &16
 
Thanks to all of you for your words of encouragement through phone calls, cards, e-mails and facebook entries.  We appreciate your prayers and support more than you can know.
 
Always believing,
Joy Cruse

Praise the LORD!!

We have all been repeating this over and over this evening.

I needed to run a few errands today and Mom was able to take me.  Since I seem to have "popped," I needed a new pair of black shorts.  B took me to Target this weekend and the maternity shorts looked like they doubled as a turtle neck (the belly band was so long).  So, I have a gift card to Motherhood Maternity that my sweet mother-in-law gave me five years ago, when we were pregnant the first time.  I've not been able to use it and so I was excited for the chance.  Mom took me to the closest Motherhood Maternity we could find...I was able to get some cute basics.

Then, Mom took me to Herb Mart to get more of the supplements that I have to take.  As we were leaving, I started to have an aura and made it to the car.  It passed quickly.  I leaned over to get my snack and (TMI Alert!!!!!) felt a rush of something in my pants.  I decided to use the bathroom at Herb Mart to make sure all was okay.  There was blood all the way through to my shorts. 

So, we called my OB.  He was off today.  However, he happened to be in the office doing paperwork and so he was willing to see me!  I pray that God multiplies the blessings upon this man for his precious heart and we're trying to decide what a good gift would be that we could give to him this week.  Mom got me there in a flash.  B was in an appt., but I reached him as we were walking in the building.  He turned his truck around and rushed to meet us.

Doc did an ultrasound and baby was just fine.  Good heartbeat and moving all over the place!!  Mom got to hear the heartbeat for the first time.

Baby has already grown so much since last week at Mayo.  We could see arms & legs today.  You can see the legs in the picture below, but what appears to be arms he said was the umbilical cord...

B made it in time to hear the heartbeat and see the baby dancing around, as well.  On his way, he had his Mom, our pastor, and many others praying...he even reached the high risk OB at Mayo.

It was beautiful to see the baby moving and see that heart beating.  The doc said that he could not explain it and he thinks that is best b/c the things he is able to explain aren't any good.

Here is our sweet baby:

See that cute little leg & foot?

So, doc has said that he wants me to spend the next few days on bed rest.  We already had an appt. scheduled with him on Friday.  Thus, we will be able to check again to make sure baby is still doing well.

We couldn't stop saying, "Praise the Lord," over and over again after we saw that everything was okay...

Thank you all in advance for praying for our sweet little one that he/she will grow to be a precious healthy young thing, that there will be no complications, and that I will be able to rest so that this little one can grow.

Mayo Wrap-up

I'm so sorry it has taken us so long to get this update posted...

Friday started with a visit to the Pituitary Specialist.  His fellow saw us first.  She was very thorough.  Then, he came in and asked us how long it took us to get pregnant.  When we told him it was the first month we weren't "careful," he said that was all that he needed to know to rule out the hypothalamus/pituitary.  He said that it is difficult to get pregnant and requires so many things to work in the hypothalamus/pituitary.  Thus, if it was "easy" for us to get pregnant, he's not worried and sees no reason for additional testing.

The only testing that he wanted to confirm was the Diabetes Insipidus diagnosis (I excrete much more than I consume).  However, he said it would be "stupid" since we are pregnant (the testing is a water deprivation test).  So, he ordered a urine test while we were there.  Based upon those results, we might repeat the testing here.

Our next appt. was with the Keto dietitian.  She was precious.  She gave me access to the KetoCalculator (how you design meals on the Ketogenic Diet).  I have a new dietitian in Dallas, but she doesn't have KetoCalc access.  So, this should be helpful and they should be able to work together. 

The new dietitian agreed with all that I am doing and liked my spreadsheet (being OCD pays off occasionally)!!!  I asked her if she wanted to design my meal plan or adjust anything, she said she didn't, that she trusted the way I was doing the math.

The biggest key is going to be all of the growth studies that they will be doing throughout the pregnancy.  If I am losing weight or the baby isn't growing, we will adjust things.  Though my stomach is definitely pooching and pants are getting tight, we found when we got back home that I've lost weight.  So, I will probably need to increase my calories.  We will try to reach out to the new dietitian on Monday for her recommendations.

After this, we were able to get back in with the POTS specialist (the mean guy from NY) for a 15 minute appt.  I asked B if I could go by myself since he seemed to ignore everything I said and only listened to B.  So, B went back and packed everything for us while I met with him. 

It was a much nicer meeting.  I explained my frustrations with the way he behaved and why I needed to step out of the meeting.  Once he sat and listened to me, rather than telling me that I wasn't telling him the truth, things got better.  I shared with him that me repeating diagnoses from other docs was not me lying, but me repeating what we've been told. 

He also told me that he didn't like me dropping names.  I asked him what he meant by that...apparently, the doc that I saw for my POTS diagnosis (the study that I was in at the end of 2007) is very well known in the dysautonomia world.  I told him that I had no clue of that and if I was going to drop a name it would have been the neurologist that they brought in from the Cleveland Clinic before my surgery.  Once he realized that I had no clue that my POTS doc was a name worth dropping, that got cleared up, as well!

So, we got on the same page and were able to truly discuss the issue at hand (for over an hour and a half)!  Overall, he believes that most of my seizures are autonomic, but some might not be...thus, if we can treat the dysautonomia, we might be able to treat some of the seizures.  He wants me to increase my sodium consumption to 6-8g/day with most of it coming through food and the rest through supplements.

He said that most people grow out of POTS.  When I asked how long it takes, he said usually 6mos-1 year.  I am coming up on three years since I was diagnosed...so, he agreed that my case is different.

That was basically the end to all of our appts.  If you've made it this far in the post, thank you for your love and concern.  I know I have said way too much!  We sure appreciate all of your prayers!

As we have said from early on, we want God to be the hero of this story.  I had truly hoped that HE would use the Mayo Clinic to get us there.  However, it appears that HE is going to be the one, all by HIMself.  All of the docs there agree with my docs in Houston that this is a very rare case and they really don't know how to treat it. 

So, come on Lord!!!  You get to be the complete HERO of this story!  The #1 Neurology clinic in the world has said that they don't have an answer or a cure.  So, if I am healed, it is YOU, Lord!!  It will clearly be YOU!!  All credit is YOURS!!!

Who is Your Hero?

Ours is God!!!

As we have said from the beginning, we want God to be the hero of this story!  After today, it appears that is exactly what is going to happen...

First, God continues to answer your prayers with timing...

We had our first appt. today with the OB dietitian.  She shared with me a few things that we will need to change for the sake of pregnancy and our little one's safety.  However, there aren't too many changes and we think these should be fairly easy transitions.  She is sharing all of those things with the Keto dietitian.  So, when we meet with her tomorrow, she will be able to design meal plans based on the new recommendations.

Second: as we were leaving that appt., we received a call from the cardiologist's office that he could see me sooner.  So, we went straight over to his office.  He said that my heart is healthy!!  That is a huge praise!!  I was told that my heart was 1/3 smaller than that of a healthy sedentary female & my stroke volume was 1/3 less.  He said that with the POTS diagnosis, my stroke volume might be lower while standing.  However, laying down, my heart is just the right size & stroke volume is on target.

Mayo is one of the leading research facilities with POTS.  This doc shared with us that the main thing they have learned is that it is not a cardiovascular issue, it is an autonomic issue; thus, treated best by Neurologists.  He used to treat POTS patients, but they no longer do at Mayo...he said that he can't tell me what to do, but he can tell me what not to do.  That is: Don't see a cardiologist for POTS.  Well, the only two docs we have found in Dallas that treat POTS are cardiologists.  So, we are going to need to uncover more there.

He kept stressing the autonomic aspect of POTS.  Throughout this journey, we have been told that my seizures sound autonomic in nature, but no one was really willing to give them a name.  This doc kept emphasizing how the POTS is autonomic.  So, we did some research on autonomic seizures and it's amazing how accurate this description is...it even says to test your thyroid levels.  My first real health issue ever was when my thyroid went crazy in 2004.  We have been asking the docs about how it could play into all of this...every single one answered that it couldn't...well, we found some research today that stated otherwise. 

Thus, we were super excited about my appt. this afternoon with the endocrinologist.  We just knew that he would be able to put all of the pieces together and explain how my thyroid was the start of all of this...well, he said, "your thyroid numbers are fine.  Do you need anything else from me?"   Grrrr....
We tried asking the question fourteen different ways to get at the fact that just because we were supplementing the right amount doesn't mean that my thyroid is treated 100%.  He didn't agree and said that all he treats is the thyroid and if it was anything else endocrine related, he would have to send me on to another specialist.  So, he has referred us to another that we hope we can see tomorrow.

Finally, we went to see if we could get an appt. with the neuro (so that we don't have to come back on the 15th).  Though it was after 5p, he agreed to see us!!!!  WOW!!!  So, he basically told us everything we've already been told and said that he doesn't really know what to do, but maybe we should add another med. 

I asked why we would do that since I had more seizures on meds than I've had since switching to the Ketogenic Diet.  He said it's because I am still having seizures.  I kept trying to make the point that I'm having fewer than when I was on meds, but it kept going over his head.  So, we agreed to go home, pray about it, and talk about it once we are in the 2nd trimester.  Research shows that once you have tried 2-3 meds and they each fail, your chances are less than 5% that another will work.  I've been on nine different meds....so, the statistics are low!!!

Anyway, the final options that he offered are surgical and aren't yet approved.  So, it would be next year, at the earliest, before they could even consider those choices....However, he feels meds are the way to go...

It was so frustrating leaving his office and not feeling like we uncovered any answers.  So, this has got to be about the Lord & His healing.  We meet with the dietitian in the morning to look at the diet in more depth and see how we can better treat these...the man that brought his son (that had epilepsy) to Jesus for healing, was told by Jesus to Pray & Fast.  The Keto Diet mimcs fasting.  Thus, we keep telling ourselves this is a Biblical approach!!!  This is about God being the hero of this story since man can't seem to do it on his own!!!!!

All of this to say, we have an appt. with the dietitian and the pituitary specialist tomorrow.  Then, we should be headed home...your prayers are such a special gift to us.

Thank you & sorry I don't have any good pictures!!!