Tuesday, October 31, 2006

Thank you, everyone, for your prayers prior to today and today, too, of course. This morning we had the Care Conference. It went well. We started it out in prayer which is always good! Jason's brother, Adam, is a ND/Acupuncturist and was able to be with us as an advocate for us as family but also parents seeking to integrate medicine for their child. Everyone is on board with every treatment we want to do with Noah as far as integrating several therapies. I think because the doctors don't have an answer or a cure for the unknown, they want to support us in knowing that we are doing all that we can do to care for Noah. The reality is that Noah NEEDS the ventilator, it is his life support...therefore, until we can go home, we NEED to be here for his respiratory support. It was a collaborative effort today and for that we are grateful. We feel supported.

Anyway, some of the labs that came back, including Noah's samples and my own, show the antigen for Aspergillus (a fungus) along with the antigen for Borellia Burgodorfi. In my plasma sample they found elevated levels of Babesia along with a few other buggers that I don't know the name of off hand. All of this to say...our docs on the outside would say that during the 2nd trimester when the blood/brain barrier is not protected, the above bacteria were able to penetrate the cell walls within Noah's brain, causing a metabolic inefficiency, showing itself as a genetic disorder. The docs on the inside of these walls would say that Noah was born with a rare genetic disorder, an inability to process or metabolize VLCFA (very long chain fatty acids). I asked the docs if it was a matter of semantics, meaning, is it possible that the two are the same? That the "bugs" penetrated the cell wall, attacking the peroxisomes which contain the enzymes that break down the VLCFA's. He said that that was a possibility.

All of this to say, due to the galactomannan Aspergillus test that was performed at UT San Antonio, we have begun Diflucan at a low dose and will increase it over time. Everyone is also on board with him having supplements to support his systems. We are waiting on several of those right now. We are trying to track down some energy machines that can possibly help on a cellular level,, neutralizing bacteria and fungus int eh body, relating to our body on a bio/physics approach.

Anyway, that is the logistical side of today, but I just wanted to share an encouragement that came my way last night/today...I have a sweet friend that has a pretty tender one on one with God. She has been seeking Him, and finding Him, in her life in many creative ways. Well, one way God speaks to her is through dreams. I hadn't talked to her in a while, but God told me last night that she was going to have a dream and call to encourage me with it. This morning while I was in the shower, she tried my cell to no avail. After I got out, the home line was ringing and it was my friend calling to tell me that she had the sweetest dream about Noah and that she was smiling in it and didn't want to wake up out of it. God is Good.

I leave in the morning for KC. Please pray for Jason, Em, my folks, Jason's brother and his wife, Auntie Ro, and baby Xavier, my sister, Dana, and our friends Jason and Becky who will all be coordinating care of Noah while I am away. There will be a lot of shuffling of schedules, I do realize the sacrifice and I am so grateful for the opportunity to be able to leave town to celebrate a most exciting new chapter in my dear friend, Molly's life! I pray for strength for everyone! Any updates will come from Jason or my mom. Love to you all! Ade xoxox

Monday, October 30, 2006

Let's hear it for Noah's nurses! Woo hoo! Here are two pics of some of Noah's fan club! Yay nurses!

Wow! Well, we're actually having the Care Conference tomorrow morning at 10:00am Mountain time. We were going to wait until next week because this week is so short with me leaving Wednesday for KC for my best friend's wedding, BUT, we have a few very interesting results from our labs that merit a meeting sooner than later as we'll begin proactive care for Noah in several areas. We'll give you more details regarding this tomorrow, but the beginning of this breakthrough is exciting! I can't even begin to tell you how crazy today has been, but KNOW that your prayers are working! It's encouraging that the specifics God laid upon our hearts months ago are being revealed.

I'm looking forward to joining in prayer with you all tomorrow, and thank you, Australia, South Korea, Afghanistan, South Africa, and Europe for starting the prayers on that side of the world today, which is tomorrow!

May God be gracious to us and bless us and make His face shine upon us, that your ways may be known on earth, your salvation among all nations.
May the peoples praise you, O God;
may all the peoples praise you.
May the nations be glad and sing for joy,
for you rule the peoples justly and guide the nations of the earth.
May the peoples praise you, O God;
may all the peoples praise you.
Then the land will yield its harvest, and God, our God, will bless us.
God will bless us, and all the ends of the earth will fear Him.
Psalm 67
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Sunday, October 29, 2006

Some specifics for October 31st...
I wanted to encourage you to invite lots of people to join with you to pray on October 31st, to fast, to seek God's Spirit how He leads you, not only for Noah but for:
  • personal revival
  • local revival
  • national revival
  • global revival

I pray that we would all be challenged in our faith, encouraged in our spirits, that our eyes would be opened to God's goodness and that our lives would never be the same. When I threw out the 31st, of course there's significance of meeting Jason, and then there's halloween that's become a pretty nasty "holiday" (WHY HAVE HOLIDAYS IN AMERICA STRAYED SO FAR FROM THEIR ORIGINAL INTENT?), but I didn't remember until my mom reminded me that 489 years ago, in 1517, Martin Luther posted his 95 theses on the door at Wittenberg Cathedral, launching the Reformation. Now that is pretty significant! Pretty cool, huh?!

Anyway, enjoy your 31st from whatever time zone, whatever region of the world. I'm honored to join with so many in prayer for revival, healing, and the Lord's return!

Saturday, October 28, 2006

A shrinking brain, a chicken, and a fire marshall...
Yesterday when Dr. Brian asked us what we wanted him to do for us and we mentioned some alternative processes, he shared a story about a Haitian boy named Enrico, the only other person he's met while practicing medicine, with a shrinking brain. He told us that they had come to the same place with Enrico that they are with Noah...there's nothing they can do. He was a resident at the time and wanted to help the parents feel as though they had tried everything they could do for their son by pulling a few strings for them. They wanted a voodoo witch doctor to come in and perform a ceremony with Enrico. This included candles, chants, dancing and even sacrificing a chicken. He even convinced the fire marshall to turn off the sprinklers in the room so they could burn the candles. Jason and I listened as Dr. Brian told us the story, obviously his point being he'll try to pull every string imaginable for Noah and our desire for care. After he was done, I informed Dr. Brian that a chicken wasn't necessary, but that Jesus Christ was the ultimate sacrifice for Noah 2000 years ago. We didn't want a witch doctor because we only believe in the true God, the King of Kings and Lord of Lords, and that candles just aren't necessary, although they'd provide a nice atmosphere...

I had to share this story with you guys because I want to warn you about spiritual things. Jesus said that a time was coming when true worshippers will worship the Father in Spirit and in Truth. Living in Colorado, believe me, there are a lot of people aware of spiritual things, but they are not from the Holy Spirit of God. We've seen it even in "the church". Read Ephesians 6. I pray that your eyes would be opened to see what is truly going on in the earth today. I pray that your heart would be softened to God's desire to love you EXTREMELY and that your life would be transformed from this day forward. When we are desiring to integrate "traditional" with "alternative" medicine, please know, it's not hocus pocus, it's not worshipping the creation but the Creator, it's not even listening to my "inner man". Our Director is the Holy Spirit of God. Period. Our Doctor is the Great Physician. Our Healer is Jesus Christ who bore our sickness, disease, and sin. Whoever reads this, wherever on the face of this earth, make no mistake that is Who we trust, and to Him we give the glory!


Friday, October 27, 2006

So...today our meeting with Dr. Brian was, well, it was...

Basically the MRI shows a decrease in volume in Noah's brain, meaning, it's shrinking. Now, the only way to know if it's actually shrinking because it's atrophying or because actual brain cells are dying is through a brain biopsy or another spinal tap. Neither of these does he wish to do with Noah because he said it wouldn't change the prognosis which is, in 2006, there is nothing they can do for Noah regarding his inability to process or metabolize something at the cellular level. This is building up as a toxin to him in his body. God told me the first day Noah had diarrhea at home that "there's something Noah can't process that's becoming like a toxin to him and as soon as we figure it out, he'll flourish". When I told the doc this, he couldn't believe how specific it was...the same process, but they just can't do anything for him.

Well, at this point the doc wanted to know what he could do for us. We told him that we wanted to treat Noah with alternative methods and didn't want any red tape. We also told him that if we were at home, we'd be doing whatever we wanted to treat him without "asking permission" of people that aren't his parents...He said he'd do what he can to get us home sooner than later and that he also wants us to write a list of the treatments we want to do with Noah so he can tell the "team" our wishes. Of course, Risk Management always jumps in at this because they have to cover themselves from lawsuits, to which I explained we aren't suing anyone, though ample mistakes and NON-communication have transpired, but that to waste our life's time suing people was not in our interest. We have two kids to raise and a whole world to reach, sitting in court rooms is of NO interest to us!

Anyway, thank you all for your continued prayers and encouragement. We wait on God and have always trusted in Him. Today's meeting was nothing new in regards to them not knowing what is wrong with Noah and not being able to do anything for him. It's a more specific answer of not knowing anything, if that makes sense, but the reality is, on this day in October 2006, there aren't enough geniuses in the world who can do anything for Noah. I have a theory, but I've never been known to be a genius...I'll let you in on it at another time...

Also, anyone wanting to come pray for Noah, you can come anytime, but on October 31st, (which is the night Jason and I met 16 years ago after a prayer meeting), all day we'd love for people to be praying throughout the day. Feel free to pray from wherever you are or to drop by. Lots of people were wanting a "prayer time" scheduled and we thought what better day than the day I met the man of my dreams!

Until tomorrow...

Wednesday, October 25, 2006

Noah's MRI with spectroscopy went smoothly today. We don't have results yet but hope to tomorrow. He was sedated with chlorohydrade which knocks him out pretty good, so has been a sleepy guy all day, but now he's awake...hospital living will do that to you. Days and nights often get reversed. Anyway...

The last couple of times I've worked out at 24hr, there's been this Johnson & Johnson commercial on about nurses. I have to tell you that each time I see it I have to choke back the public display of emotion because it really gets me deep in the heart. Noah's nurses the last 12 weeks have been nurturing, patient, loving people who have genuinely cared for Noah. Everybody give a cheer for the nurses! And, if you are one and you're reading this...you are a blessing and we thank God for you!

I've got to go to bed because my nights and days are a little off, too! I'll post more tomorrow. Dios le bendigan!

Tuesday, October 24, 2006

Noah has another MRI tomorrow at 11 am. They want to run a MR spectroscopy (an additional reading done using MRI). During his first MR Spec there was evidence of an elevated level of lipids (see post below), which could be evidence that Noah is storing fatty acids in his body and not breaking them down. This could explain why the mice died - he is building up toxins in his body. For whatever reason, during the second MRI they didn't do the MRS.

Even though we are frustrated that we are now just finding out about the results of this test (not surprising that there was a breakdown in communication as Noah's had about 20+ Dr's on his case since he arrived), we are happy that our favorite neurologist is really acting as an advocate for Noah. We asked him to be his primary Dr about 4 weeks ago, as we did not want to see the just another Dr who just happens to be attending that particular week. We wanted a leader - someone to be in charge. I'm confident that Dr. Brian is pushing hard to figure out what is going on and God will reveal.

Please pray that the second MRS will lead to additional results.

He did it again!
Noah got to go outside again! "Grampa" Cloy and Noah's nurse, Miss Lisa, helped him out on his adventure. This time Noah was awake for the whole thing. As you can see, he was prepared for the bright sun...
Getting outside was good for all of us. We even shared a good laugh. Cloy shared the story of this patient they had had years back that is "orbiting the earth with the director of Star Trek". I said, "What the heck are you talking about?" He said that the kid wanted his ashes to be put on a satellite that orbits the earth. His ashes are up there with about 200 other people. I asked, "Are they all mixed together?" Lisa said, "No, they are in tubes just in case he wants to go somewhere else when he gets back". Proverbs 17:22 says, "A cheerful heart is good medicine..." By the time we were heading back inside, my stress had somewhat subsided.

Thanks for continued prayer for us and for continued emails to us with prayer requests. We really enjoy praying for you all. Posted by Picasa
Hi people!
I have just learned information TODAY that was actually in the docs hands on August 3rd, from his first MRI and it is quite KEY...WHY No one pursued this with diligence, I'LL FIND OUT...I don't know why today is the day we are hearing of it...Please pray for us during this time. It doesn't do me any good to kick in walls or fly off in a rage, but SERIOUSLY, the medical industry is experiencing serious GRACE because if God weren't in charge of this and I were, some serious butt kicking would be occurring! (Docs should be praising God and thanking Him for mercy now...)

Noah will have a follow up MRI this week to see if this finding is still there, better or worse. We'll keep you abreast.

Here's the info if you want to copy it to a doc for review (the bold sentence the KEY information):
MR spectroscopy: Short echo MR spectroscopy was performed in the left basal ganglia, left parietal white matter, and in the midline posterior to evaluate the cortex. There is elevation of the lipid peak consistent with stored fatty acids which can be seen with peroxisomal disorders. However, there is no reduced NAA or elevated choline to suggest neuronal degeneration or abnormal myelination.

Noah's muscle and nerve biopsy findings are in Sydney, Australia, with a Professor Robert Ouvier and his team for analysis. He's the leading guy regarding peripheral neuropathies in children.

I don't want to write any more about it...I really just want to snuggle with Noah and enjoy his company. One of his nurses from the PICU used to say "he's just a nice person". He melts my heart!

Monday, October 23, 2006

This past weekend was pretty uneventful but a good time as a family, nonetheless. We continue to be blessed to have time as a family with my parents here to help.

Noah's skin is getting better! Thanks to no antibiotics or other drugs running in his system. Em and I got him the mildest available baby soap at Vitamin Cottage while we were picking up some yummy food. I also asked one of the workers if there was something I could take for stress/major hair loss. She said, "Well, first, it's important to eliminate your source of stress..." PROFOUND THOUGHT! Anyway, hair is overrated...

Today the docs wanted to change Noah's NJ-tube into a GJ-tube as a more permanent solution to his feeds. This would have entailed Noah being sedated under fluoroscopy and his Mickey button being removed and replaced with a double port. This would provide access to his stomach and to his jejunum. The tube from the port site would be scoped through from his stomach into his jejunum via a camera through his mouth. The reason the docs want to do this is because Noah vomited 3 weeks ago and they are concerned he'll aspirate, as he had done previously. Well, Jason and I opted out of this procedure for now...Noah's Mickey button worked just fine for him in the PICU and even up here on the floor. Of course, we don't want him to aspirate vomit either, but we want to see if his tummy can be used again. He's only vomited with a high fever. If I spiked a temp and had a bug, I'd puke, too! So would you guys...Anyway, since we are waiting for the interpretation of our tests this week, we want to wait on the procedure and make sure knee jerk reactions aren't occurring regarding the care of Noah.

Today I went to see my friend Dr. Julie, the one who is helping us get tests sent out...Anyway, while I was waiting a woman came in, curious about care for herself and another family member. I couldn't help but share that Julie is great and that she helped me sleep after 7 years and she's helping me with our little guy in the hospital. She said that she had noticed my wrist band. She told me that she works part time at TCH in the pharmacy, but couldn't ask me questions for legal reasons. I told her Noah's name and she said she's been making his meds for him. I told her thank you, but also told her that I hoped she wouldn't have to make him any more! Small world that we met 15min from the hospital at Dr. Julie's, huh?!

Tomorrow the forecast is 71 in sunny Denver. Grampa Cloy said we can go outside, again, in the afternoon! Woo hoo! We'll take pictures. Pray Noah is awake for it! Now go get some Vitamin D!

Friday, October 20, 2006

It was A Beautiful Day...
Here is "Grampa Cloy" making it all happen (not the sunshine and breeze, of course, that was God...) today. He hooked Noah up with a wagon and O2 tank and off we went. Cloy is the head honcho RT at the hospital and he is someone we really love! I hope you all get a chance to meet him some day because he is an exceptional man, wired deeply with a humble heart, and he knew it was this mom's dream to get her peanut out for fresh air for the first time in 11 1/2 weeks! Give it up for Cloy, people!

Noah loved his outing, though he doesn't remember it as he was worn out from his bath from earlier this morning. My folks watched him while I ran errands and
picked Em up from school. He has NO fever today and his face is looking so much better now that he's off the antibiotics. Day by day, one step at a time. When Jesus said not to worry about tomorrow as it has enough trouble of its own, I'm slowing learning that beautiful lesson.
What a big day! Noah not only adventured outside, but he had tummy time for the first time in 11 1/2 weeks, too! It was such a great day! Noah had special visitors...Bobby and Bebe, Big Sis, my new dear friend, Mandy and her friend, now ours, Tiago, from Brasil. The small world story that comes from that connection is AWESOME. God is so cool how He makes a world of 5 billion seem so small. Another way I was so blessed today is that I got to talk to one of my favorite people in the world, a woman who has spent a lot of time in the hospital with her children, whom I adore, and whose faith and strength astounds me... our lives are so rich in knowing wonderful people that love us and who we love in return. I'm without words... Posted by Picasa

Thursday, October 19, 2006

Praise! Noah is OFF ALL his antibiotics! Jason and I did not feel comfortable with the three "big guns" he was on, and the fact is...he'd been on 2 of them for 3 weeks, the third being introduced Monday when he spiked his fever "just in case". We don't mind antibiotics if scientifically something grows out in a culture, however, to throw 3 at him to cover the bases UNTIL something grows out, well, that just doesn't make sense...Well, nothing grew out of his cultures, so we told the docs that if they didn't take him off the antibiotics then we would decline that treatment. They came in later to let me know they had decided to take Noah off his antibiotics...excellent choice. This is not the only good news that came today...Noah is off "droplet precautions" so that means two things: 1) NO MORE YELLOW GOWNS, MASKS OR GLOVES and 2) WE ARE GOING TO TAKE NOAH OUTSIDE FOR SOME VITAMIN D! I'm so excited he'll get to have a little fresh air for the FIRST time in 2 1/2 months! We'll get a portable O2 tank and "bag" him outside.

I'm convinced Noah was having a nasty reaction to the meds b/c his face and body were beet red and his body is broken out in a terrible rash that won't go away (possibly due to the continuous drip of antibiotics). Also, his eyes look as if he's been doped and they didn't have that appearance earlier. Anyway, we are glad he is off the antibiotics now and we'll wait to see what his skin and eyes do from here. We have brought in probiotics to replenish his system after the overhaul of antibiotics.

I sent off some of my blood yesterday to a lab with the help of Tony, "The Amazing Lab Tech". Seriously, if you ever need a blood draw...he's the man! I've never had a more positive blood draw experience.

Because Monday, Tuesday and Wednesday were rough for Noah, I informed him that Thursday would be his day...so far, so good!

Wednesday, October 18, 2006

Noah and his monkey, PIP (acronym for his pediatric clinic).
The night before Noah was checked into the hospital on August 2nd, I changed the display on my cell from "i love em" to "grace peace". I wanted to change it to "i love em and noah" or "i'm the most blessed mom in the whole wide world" but those were too long. God has shown me so many times why "grace peace" were the words that would stare me in the face every time my phone rings. It is God's grace that daily sustains us. His grace that I draw on when I want to give a piece of my mind plus a little more to this person or that. It is His peace that enables us to look outside of our circumstances, beyond the mistakes and unknowns of medicine, and know in our deepest parts that Noah is in the safest "place" in the whole universe, God's protection.

We are truly grateful to God for all the wonderful people we have met through this experience. Obviously we would not have met so many great nurses if we were at home. We wouldn't have "met" a lot of you, and we've been really blessed to be able to join in prayer for your needs. We wouldn't have met so many other families that are fighting for their kids. No, hospital living is not ideal. I don't jump up and down every day with sheer excitement at our circumstances, because the reality is other peoples' reality is WAY worse. But, if I can't find the beauty in this, will I recognize it when it's in front of my face? Posted by Picasa

Tuesday, October 17, 2006

Did I ever tell the story about the night Noah was born? Noah's night nurse came by in the morning to say goodbye to me after her shift. She told me that she had been a nurse for 25 years and due to the busyness of the job these days, she wasn't able to hold babies very often. She said that during the night she was walking by the nursery window and saw Noah sleeping soundly. She had this uncontrollable urge to go hold him, so she went in and held him for 5 minutes. She told me that she had never experienced such peace in her life than when she held Noah. I explained that Noah meant "peace". She asked me to please tell Noah when he was older the story of the nurse that had peace holding him the night he was born. I told him right away and cherished in my heart the fact that God was using our little man, even on day one...

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Monday, October 16, 2006

Noah's doing better now...his temp is down, his B/P is normalized, heart rate back down to normal...he had spiked a temp and aspirated some stomach fluid (his feeds are into his jejunum) and was breathing very heavily. A new big dog antibiotic has been introduced (UGH!). He's going to have another blood transfusion today, my sister Ashley's blood, because his hematocrit was down again. He's resting now and is peaceful. Thank you for your prayers. God really sustained Noah this morning! He was in rough shape! Em's here. She dropped her auntie off at the airport and asked me if she could go see her "honey" at the hospital. She also informed me that she wants to share a bedroom with Noah when he's older. Cute, huh?!

Sunday, October 15, 2006

So, I REALLY NEEDED to get baptized today...we left the house in PLENTY of time to head west to Red Rocks Church for the baptism service. We were 5 minutes from our house, near the heart of downtown, and there was a traffic jam on a Sunday morning. I have to admit, my patience was being tested. Then, ahead at the intersection I see Denver Marathoners running south on Lincoln. I'm really proud of them all, don't get me wrong (I know many marathoners, in the family even), but of all mornings, when we're going to get baptized, waiting for hundreds of people to cross the street was not my idea of a patience builder! After waiting for 20 minutes, we went through an alley and headed east for 3 miles, of course, RUNNING INTO THE MARATHONERS ON THE OTHER SIDE OF OUR DETOUR!!! I thank God that His grace was ABUNDANT this morning because I could have demonstrated even worse behavior in front of my daughter than I did! Let's just say it was a good morning to be baptized!

Speaking of which, it was a great morning with family and very dear friends. There were several people who got baptized this morning, all sharing their testimonies on pre-recorded videos. Pastor Shawn had come to the hospital a week ago to video tape my reasons for being baptized. It was neat to see Em and Noah up on the screen with me in the video while Jason and my sis held my hand at the front of the church. Thank you for your prayers and support. I am truly humbled to have had this opportunity today.

Noah has been sleeping excessive amounts the last couple of days. I don't know if he's fighting infections again or what is going on. I'm going to snuggle him for a bit. We pray that this week will reveal many things that are hidden and that Noah's healing will be manifested soon and very soon. For God's glory!

Saturday, October 14, 2006

Noah got a new pumpkin hat from his friend, Miss Laura.
She just whipped it up along with a yummy dinner and 8 inch chocolate chip cookies that should be sold at Whole Foods for a million dollars! (Interesting that 3 different cookie deliveries were made the week I told everyone that I'm trying to get in shape...)

Anyway, here's Noah getting a little mad...he's looking a little rough as he continues to break out in an awful rash that no one can explain. His eyelids are puffy and his feet are really swollen. He had been on IV fluids but when his formula was reintroduced, they didn't discontinue the other fluids even though I kept telling them I was concerned he was taking on too many fluids...now he's just on formula. The biggest frustration is that there isn't anything being done to "support" Noah. I've brought in pro-biotics for his healthy flora to be restored but that was put on hold by the docs for a week while he was sick. Why they would do that blows my mind. It's the only thing that is GOOD that is going into him!

Tomorrow I am getting baptized as a grown up. I was baptized as a child but have wanted to be baptized as an adult for about 19 years but just haven't done it. Jason was going to baptize me on our honeymoon, but, well, you know...and then in Mexico a few times I thought about it, but we forgot again. Well, 3 weeks ago I was thinking about it again and Pastor Johnson dropped in to pray for Noah and mentioned that they were going to have a baptism service in 3 weeks. Well, that's tomorrow. My parents just drove in from Phoenix and will watch Noah while Jason, Em and my sister, Ashley, and I go to church.

The reason I am doing it at this point in my life is that I want a new beginning. In this I mean that from here on out, I want to live my life with meaning, purpose, passion and perseverance. I want to be a blessing to my husband and kids and be an encouragement to anyone I encounter. This journey with Noah has opened my eyes to how self-absorbed I have lived life thus far. I apologize to everyone who has been affected by me in that way. I am truly sorry! I desire to live selflessly, so this is my public expression of repenting of selfishness. HOLD ME ACCOUNTABLE TO THIS, PLEASE. DON'T CANDY COAT IT WHEN YOU SEE IT IN ME, TELL ME WHEN I'M SELFISH! Anyway, Em and I are off to bed. Please pray for the boys as they are at the hospital tonight. Jason and I are praying Noah out of the hospital before RSV season starts! Posted by Picasa

Thursday, October 12, 2006

The Deception of this Generation
Today Em and I were playing at City Park, enjoying the beautiful autumn day. She quickly met a brother and sister duo playing that invited her to jump on the tire swing for a whirl. Of course I was summoned to push faster, faster, faster. The little girl told Emily she also had a baby brother, to which Emily replied that she, too, had a little "brudder" Noah who was in the hospital. The girl, Somalia, asked me why Noah was in the hospital and I said that the doctors don't know but that God does and we trust Him. I asked them if they knew God and the little brother said yes, he's Moses. I said no, Moses was a man of God, but he wasn't God. Then he said out of the blue that Jesus killed people, that the Bible even said so. I said that Jesus did not kill people but loved everyone, raised people from the dead and healed the sick. I said that Jesus came to restore man's relationship back to God. He said, "Nuh uh". I said, "Uh huh. Well, actually, yes He did. I've read the Bible several times and Jesus never killed anyone, He only loved." Then the big sister told me that they practice old Egyptian religion and that they pray to their ancestors every morning and that it's kind of fun...LATER, in the car, Emily asked me what they believed, why they believed what they did and who they prayed to. I told her that they basically pray to their dead grammas and grampas to help them and guide them. She said, "That doesn't even make sense...they just don't know...we can just talk to God." Simply spoken. Emily, the 4 yr old theologian.

Wednesday, October 11, 2006

This morning when I worked out at 24hr Fitness, I talked to this girl that works at the front desk who was cleaning in the gym while I did lunges...anyway, she asked how I was doing and I told her that I was working out to fit into a dress for a friend's wedding but was cramming in my workouts due to living at the hospital with Noah. She asked about Noah and I told her that no one knew anything but that Jason and I trust God with Noah. She said that that was the best plan, trusting God, and then proceeded to tell me how she is 19 years old and grateful for her job because she solely supports her mom and 16 year old brother. Her dad walked out on the family recently when her mom was diagnosed with rheumatoid arthritis in her veins. So, please pray for Vanessa, her mom Sharon and her brother Skyler. Also, pray that her dad realizes his sin, goes quickly to his knees and goes humbly back to his family. Thanks!

*Noah had a good day today. He hung out with his auntie and nana and big sis and daddy and mommy. He was pretty busy with a bath and trach care, but not too busy for snuggling. I love holding him and looking at his long eyelashes. My neck is reminding me of how I used to nurse him and get kinks in it from staring at him. Thankfully we have a wonderful nurse on the floor who integrates massage for patients AND parents! Tomorrow I'll learn the ins and outs of infant massage.

One of the labs wants my blood, too, so they can compare to see what Noah and I might have in common as far as what could have broken the placenta barrier. I was encouraged that they want to look at my blood as it's really the first effort down that road. Noah remains stable but weak. His rash on his body comes and goes in varying degrees every day. His NJ tube is now functional and he's had "munchies" running all day now. He's snoozing away now for the night. Sweet dreams to all of you!

Tuesday, October 10, 2006

Today is Noah's 4 month birthday! He got one dollar from "Grampa Cloy" the respiratory therapist. We're heading down to fluoroscopy for his new NJ tube right now...we just got back upstairs to Noah's room. I rode in his bed on the way up and "bagged" him while the nurse and Cloy tried not to run into walls with the SLIGHT weight change in the bed...Noah has his new NJ tube in. The reason they aren't using the Gtube right now is because of his hypotonia, they are concerned that the sphincter at the top of his stomach is also floppy, therefore increasing the risk for aspiration. (I feel like I'm repeating myself, so I apologize if I already wrote this...)

Anyway, for Noah's birthday, he and I read Psalm 119. It's a great one! I'd like to memorize it but it's hard for me to memorize things without a tune...maybe Bono could come up with one?

We'll likely have a care conference soon with all the docs and anyone we want involved. They all want the results to the tests we sent out on our own accord. I find that interesting since they didn't want to involve our insurance to send out those tests...Jason and I will share the results of the tests with the different docs here, but if you'd pray for us in that process, it would be great. There are a lot of principles here that deep down I am trying to reconcile...Oh, I am a tortured soul, trying to live by the Spirit but not be so spiritual that I am no earthly good...anyway, we'll keep you abreast on the care conference.

Monday, October 09, 2006

Graves Family Photo
Here we all are enjoying a Sunday afternoon together. Today, Monday, Jason got to hold Noah for quite some time. When he and the nurse were putting him back in bed, his J-tube got pulled out accidently. Tomorrow Noah will get another one put in, but this time, since more healing has occurred at the site, they'll use the Mickey Button port for the J-tube. Noah's been really alert today, looking around and sucking his pacifier.

I'm going to go spoon him for a while. He's so cute I can't even resist! He's gotten another following of primary nurses up here on the 3rd floor. They have to duke it out every time they overlap. I think 6 have signed up! What a guy! We're waiting on a lot of lab results, so will keep you all posted. We are praying for you all and are so grateful for the opportunity to do so. There is so much to pray for that now I know where the Scripture comes from to pray continually, 1 Thessalonians 5:17! Posted by Picasa

Sunday, October 08, 2006

Here's a picture from today of Em and Noah snuggling. She got a lot of quality time with her brother today. We had story time and Bible time and sang songs, one of which, of course, was "Baby Face".

Noah's surgery went well last week. We got all his blood and spinal fluid sent off to the labs we had researched through a doctor on the outside. It was an 11th hour situation, for sure, as FedEx's last pick up here is at 5pm, so my sister and Em and I drove it over to their store at 6:55, closing time...7pm! Thanks to Tony in the Lab and super nurse, Shellie, for all their hard work in getting that all together! Anyway, while Noah was in surgery I got to pray with some people in the waiting room, waiting on their own loved ones in surgery. DON'T HOLD ME DOWN! Noah had to have another NJ tube put in because when he vomited last week he had aspirated some into his lungs. He's finishing up another round of antibiotics, which, of course, didn't do the job, so he's running another low grade fever. Jason's almost through Proverbs with Noah. It's about raising children, so quite fitting. Em and I are almost through with Psalms with Noah. The docs said we'd be up here a long time because they won't send Noah home on a vent without a homecare nurse, and those are several months out, so, by the time we're done here, we'll probably have the whole Bible read to Noah.

Well, the boys are hanging out tonight while Em and I head home. I'll take her to school in the morning and go work out as I have my best friend's wedding (sleeveless dress) soon! (Can you say, "Post partum?!")

Have a wonderful night and a very blessed week. Look at the hearts of people you encounter rather than the external. You'll see them the way God does and it may just move your heart to action... Posted by Picasa

Thursday, October 05, 2006

Noah is in surgery as I type. The labs we wanted drawn will be sent out today. Thanks so much for your prayers.

I pray for all the generations on the earth right now and the ones to come...it is a difficult age to live in. There is so much stimulus and so many distractions, it is easy to get sidetracked on things that "seem" important at the moment. When I sit to pray or read and meditate on God's word, I get about 17,000 thoughts that rush in; what I need to do, what's on the agenda, blah blah blah. If that happens to me, I know I'm not alone. I pray that we can all focus on those things that are eternal, that we can love really hard, whether we "feel" like it or not. I pray that we'll be used for God's glory and that we will truly walk in life in the Spirit. That is hard to do, but not impossible because God's word says the Spirit is willing but the flesh is weak. I am praying for all of you out there. What if tomorrow were the day Jesus were to return? Seriously. How would I live? What would matter? Would I tell others or would I hide that in my heart? You may not be the most popular person as a result of what you have to do, but obedience is more important than popularity.

I praise God that He is restoring people back to Him!

Wednesday, October 04, 2006

Now, I know that more than 16 people reading Noah's blog have prayer needs because Jason set up the blog counter and I know that more than 16 people read his blog. Thanks for sending some in...keep them coming. It was great to pray for all of you today and we will continue to do so! I was sitting in one of my classes in college, many years ago, and we were all praying in small groups at the same time. The thought occurred to me that even though it sounded confusing to my ears, the fact is is that God hears the hearts of millions around the globe at the same instant and it isn't loud or confusing to Him at all. Pretty cool, huh?! There is no voice mail, there is no busy signal...

Noah is having a nerve and muscle biopsy tomorrow, along with a new PICC line put in. We are electing for this procedure because Noah's nerve, down on the outer side of his ankle, will show us whether there is myelin and if so, is it in tact or is it being destroyed. The PICC line will also enable the nurses to draw blood and give meds w/o re-inserting IV's or doing heel pricks. The biopsies will be sent to pathology for review. We'll draw some blood samples to be sent off to research labs across the nation. Hopefully in the next couple of weeks we'll have some more answers one way or another. Meanwhile, Noah's heart rates are jumping around a bit, though his rhythm is normal and his body is alkaline which means he is blowing off too much CO2. The docs are adjusting his vent settings accordingly, but it's puzzling. The cardiologist and pulmonologist both say his brain is telling his heart and lungs to do that. I don't know what time the surgery is scheduled for but it'll be some time after 1:00pm.

"...let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Let us fix our eyes on Jesus, the author and perfecter of our faith..." Hebrews 12:1b-2a
A request...
As you have all prayed for us for the last 9 weeks we have been so encouraged and strengthened. Would you all (everyone who has ever read Noah's blog...) please do me a favor and send me one prayer concern that is on your heart? Our family wants to return the encouragement and lift you all up in prayer. Before this all happened, God had us praying for many of our friends' marriages. The devil thinks that this will keep us from praying for others, but it won't, SO PLEASE, PLEASE, SEND US SPECIFIC OR ANONYMOUS PRAYER REQUESTS!

*I'll send out an update tomorrow regarding our mighty little man. Lots of developments...

Monday, October 02, 2006

(Notice Noah's clear cheeks! They are clear now, too!)
Noah spiked his highest temp this morning at 103. He has vomitted twice and just had a major colon blow. They had started him on an antibiotic for the staph infection in his trach, but obviously that's not the right one or he wouldn't have a fever. They are starting another heftier one today, actually two. They took blood, spit and urine to culture to see what is growing...they are going to consult infectious disease for virus analysis, ie. West Nile, Lyme's, etc., though they have said they don't think he has those...I'm not really interested in opinions at this point, I am growing tired of them...

I won't rant and rave, I praise God that He is the one sustaining Noah's life. The docs are doing what they have been trained to do. We trust God with Noah's life and wait on Him alone for direction. I sent off his second stool lab test today and will be requesting our own blood draws today. Those will be overnighted to labs across the nation for analysis. Thanks to our dear friend, Mr. Goodman, Noah has more blood from which to draw.

Jason has people in town this week for training, then he heads out Weds thru Friday for work. Auntie Ashes will be here all week to help me with Em and Noah. Thanks for your prayers and constant encouragement. From Jude: May mercy, peace and love be yours in abundance. Posted by Picasa

Sunday, October 01, 2006

When Jason and I were in Japan last year in September, we were touring a town with our contact where there were many temples. We didn't go into any temples but walked around them and were looking at the beautiful architecture. One striking feature of each of the temples was a large bell hanging above the entrance, attached to a long rope that hung down for worshipers to reach. I asked our friend what the bell was for and he said it was to wake the god so the person could pray...I told him I thought that was very sad because the God that I pray to never sleeps and never slumbers. Thank GOD! Imagine if He was snoozing while people all over earth were dialing in... (Psalm 121:3&4)

Noah experienced his first healing! His face was really red, irritated and had TONS of bumps all over it for weeks(anyone who saw it can testify). He had it even yesterday afternoon. Well, last night when I went to spoon him in his crib his face was perfectly clear! (We have pictures!) I called Emily over to look at her skin and her eczema looked better than it had in months! The day before her skin was red and raw! Praise God! (Today when the nurse and I cleaned Noah's trach and changed the ties, she was holding his face with synthetic vinyl polymer gloves, his face reacted and turned red again!)

Noah is on antibiotics again because he has a staph infection around his trach tube. He spiked a few fevers but they have gone down now. We'll have another change in docs tomorrow as it's the first of a new month. His attending will be Dr. Diederding, of whom we have heard great things. Hopefully she will collaborate with us as we continue to do our research and testing. Hey, novel idea, perhaps the hospital will keep doing more tests since they've ruled out a lot of genetic disorders, why not the simple things like viruses?! We'd obviously sell our house to cover any costs, but the fact that they won't bill our insurance for the tests we want run but will charge our insurance $6.95 for a half size box of tissue that contains 40 pieces...one of the nurses said,"Your insurance pays for the care for four other patients. We don't practice socialized medicine in America, but we really do." Interesting. Anyway, please pray that we would be able to get the tests out that we need done without red tape.

I miss our PICU nurses, though the ones up here are great, too. Change always takes time. We're actually moving today to a room closer to the nurses station since Noah is on a vent. I don't know the room number so when you call the regular number, just ask for Noah's room.

Last week was a great week for me. I fasted for the first time in years. It felt wonderful and I got to read the Word a lot and spend time being still. It's not often once you become a mom that you can actually do that, so again, I thank God for this time to do that.

Last night Jason and I got "off campus" together to join some dear friends for dinner downtown. My big sister hung out with Noah while Em had time with her Nana at home. It was good to be with friends and to enjoy some delicious Cuban food.

Here's a picture of Noah getting a little help from his monkey to prop up his legs while he sleeps. I couldn't resist! Have a great Sunday! Posted by Picasa