Thursday, November 30, 2006

Tonight was family fun night in the halls of 3 North. Jason and Em picked up some dinner and the kid "goodie" was large pieces of activity paper with folding guidelines for awesome paper airplanes. I made two of them and we spent a good hour and a half having throwing contests in the vacant hall around the corner from Noah's room.
Sometimes Em would say the planes were flying to London, other times to South Dakota or to Ashes' house. We still have to work on proper arm follow through and technique, but we had a blast, nonetheless. After a while, Em went into Noah's room and came out with our very own John Elway Bobble Head, courtesy of some volunteers a while back, and placed it in the hallway, stating it was Mary Poppins and we were to aim for her. (Em's a huge fan of MP. She got to see her in London 2 years ago and her friend is going to NYC to see her, so it's all fresh in her mind again...) Anyway, Em asks John, "Does Emily get to stay up late tonight?" and then shakes his head, "YES" or, "Does Emily have to go to school tomorrow?" and shakes "NOOOOO". After throwing for quite some time, Em came over to me, hugged my legs and kissed me and said, "Mom, I'm really having fun with you! I love you as big as the sky!" The positive moral of the story: we never would have had this touching moment if Noah weren't in the hospital because there's NO WAY in the world we'd ever own a bobble head. SERIOUSLY, who thinks up these things?!
Yesterday Noah's catheter was taken out to see if he'd urinate on his own or not...though he was able to empty about 15cc on his own, that certainly isn't enough to empty one's bladder. He was straight cathed twice, once successfully, the second took several tries. All this to say, after a very frustrating debate about straight cathing versus a permanent catheter with the night pulmonary team (Emily even chimed in and said, "My mom doesn't believe you guys believe her!"), the UROLOGIST (yes, we value the opinions of the specialist in the area of the specific BODY PART-let's stick to the parts we know...) came to say that she'd recommend a permanent catheter for another month so that Noah's little weenie doesn't get damaged and irritated with continuous entry. No, she didn't use the word, "weenie" that's edited blog talk.

In the meantime, Noah had more acupuncture yesterday and it continues to bring about positive stimulation. Tomorrow we'll turn Noah on his tummy so that Doc Julie can work on his meridians that focus on the bladder function. Noah has been opening his eyes more intermitently, he moves both thumbs now and his left ring finger, and the nurse the other night (an incredible woman who became a nurse because her son had a cancerous brain tumor-he's cancer free now, Praise God!!!) witnessed a facial expression on Noah which she's never seen in her month and a half of caring for him! So, while we wait for the bureaucratic process of seeing whether anyone wants to go out on a limb and help our son with a treatment no knows will work or not (who would have thought moldy cheese would lead to penicillin? And I'm sure the first lobotomist wasn't a popular person...) , he's working his tail off to show us little signs here and there. Any time I smother him with kisses, his little thumbs wiggle! It may seem small to the rest of the world, but it's our little treasure!

I'll check in again later...I'm taking Em to a play date and running a few errands. For those of you who don't know, I'm "homeschooling" Em for the remainder of the school year. The reason it's in "quotes" is because it's preschool...but anyway, I just wanted you to know. Jason and I have prayed about it quite a bit and with all that's going on, I wanted more one on one time with Em, which we weren't getting taking her back and forth to school. So, any locals can meet up with us on our field trips around the metro and she'll have more time for play dates. Until later...

Tuesday, November 28, 2006

First of all, thank you for all of your support today, physically and through prayer during the meeting. It was a blessing to us to have so many familiar faces in the room and be encouraged in that way. Regarding the meeting, Jason and I didn't expect "action" to take place, and it didn't. It was about what we expected...a surreal experience where we are trying to put our desire to save our son's life into words...there was no conclusion, especially since there is no diagnosis, which we emphasized we were beyond, but basically it was a forum to hear what our intentions are with Noah, which in our hearts is not to give up on him. As far as what the hospital can and will do at this point, well, it remains unanswered...they said at closing it's an ongoing discussion, to which one physician said, "I think we owe it to the family to come back to them at a specified time with an answer because this has been ongoing for four months now..." Meanwhile, we continue to seek second/third/fourth opinions of experts around the nation. We also continue to do research regarding umbilical cord stem cell transplants. We have a lot of homework to do. As far as care goes for Noah, he continues on supplements and will begin regular treatments of acupuncture to follow the ones he had from his Uncle Adam. Too bad we aren't in a Chinese hospital where they do acupuncture everyday. Noah has had some positive responses to it. I know many of you wanted an answer or course of action from today's meeting, but at least the hospital is aware of Noah at an administrative level. Now we continue to do what we've been doing this whole time...praying and trusting God with our kids, that as we stated before, really aren't ours at all...

Monday, November 27, 2006

Dear Lord, it's me, Noah...I'm joining with everyone else who is praying for me...please send a miracle. Thanks!

This morning I found Noah's hands folded neatly around his bunny in the "praying" position. His nurse is pretty cute! This, though, set the tone for the day as we had a good time of prayer as a family before everyone headed out of town. It was great to have everyone here, to feel the support physically, emotionally, spiritually and to be reminded that Noah isn't only our son and Em's brother, but he's somebody's grandson, nephew, cousin, great-grandson...

We had a sort of "preliminary" meeting with a doctor this evening who specializes in bone marrow transplants, different than umbilical, but somewhat in that field, who will likely be at the meeting. We weren't discouraged, though we certainly weren't encouraged...this is such a controversial topic, it is so new in research and experimentation, there are so many politics the more you look into this topic and the reality is, not a lot of doctors or the FDA are interested in being the first in the USA to try this on a child without a concrete diagnosis...I'm pretty sure when Peter stepped out of the boat, he knew that he wasn't going to be walking on a concrete sidewalk, he was fully aware that his surroundings were water and he was activating his faith...

God knows what is supposed to come of the meeting at 1pm tomorrow in Tammen Hall in the Founders Room on the second floor. One thing I do know is we have all of your support and prayers. Thank you all for your continued strength! You guys ROCK! Going to bed early for the big meeting...good night, and may God richly bless you beyond your wildest imagination!

(Tammen Hall is the original historic building of the hospital, so not in the main entrance but across the round-about from the main entrance. The Founders Room is on the second floor. Take a left off the elevators.)

Sunday, November 26, 2006

My favorite "kisses" with Noah are nose rubs. I just can't get enough!

Jason and I met with the neurologist this morning for about an hour to get all of our ducks in a row for Tuesday's meeting...this is a very pivotal meeting. The reality is, because no one knows or can name a diagnosis for Noah, only a bad prognosis, seeking treatment at this point is exploratory or experimental. We will be the first parents at this hospital, and possibly anywhere, to ask for an umbilical cord stem cell transplant or cord blood transplant to be performed in the area of neurodegenerative disorders. I've always lived under the philosophy that it never hurts to ask. The worst that anyone can say is "no" and even then, well...Jason and I both feel that after doing the research we have done, if we don't pursue this for Noah, we haven't done everything we know to do. No, we don't know if it will help him or not, it's experimental, but there is no other treatment available and Noah is progressing. We know we are desperate. In asking for this procedure to be done on Noah, the hospital may do one of 3 things: approve it and somehow get our insurance to cover it; approve it and we pay out of pocket, or say they can't and won't do anything for Noah. Obviously #1 is ideal, but #2 is acceptable. Regarding number 3, hopefully we won't have to leave the country for care because doing so is putting Noah at risk with transport and everything, but Jason and I are willing to do it since we feel so strongly about the stem cell transplant.

Jason is one amazing man. I am really proud of him. God has laid several things on his heart regarding Tuesday's meeting, including how he'll phrase things, so as you pray, seek God's words to be spoken through Jason and God's will to prevail, no one's agenda, not politics, not even our own, but God's will.

Some reading at this point might say, "It's God's will to take Noah home...", well, He's had ample opportunity, and we've laid him at God's feet daily, yet Noah is still here. Then some would say, "Well, a machine is keeping him alive. You are "robbing" God of taking Noah to heaven...", somehow, the God who threw every star into place, formed the planets in His hands, has my name written on the palm of His hand and Who's glory is so brilliant we are unable to look upon it, somehow, I just believe He's bigger and that I can't possibly hold the power of "robbing" God of anything. I, like everyone else, don't know...but what I do know is God ROCKS and He's brought Noah into our lives for a purpose. I don't want to miss out on that purpose due to politics or personal opinions. There are parents all over the world in similar situations. I can't pretend I'd know what to do in their shoes when it's hard enough to know what to do in our own. All I do know is that Jesus' words regarding worry are so powerful. It's the first time in my life I've heeded and walked this verse..."Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34 One day at a time...

Saturday, November 25, 2006

Compelled to tell...

A smooch sandwich...
Here's Noah enjoying some lovin' from his Aunties.

So, people who know me know that I've never really cared what other people think about me. I know it can come across harsh sometimes, but since my worth isn't found in the eyes of another person, it's just the way I plow through life, I guess. When women are sizing others up from head to toe, I could care less what their opinion is of me. Lately, though, I seem to care. It's in a different way. I don't want them to "accept" me or know about me, I want the world to know about my little guy. I find myself wanting to tell complete strangers in public about Noah Steven Graves, how he's been in the hospital for 4 months and how the doctors don't know what's wrong...I don't want them to feel sorry for me as a mom or us as a family. I DO want everyone to just live a little deeper, NO, a lot deeper, as a result of knowing Noah's story, though. I know it's selfish, but it's my desire. Maybe in knowing people, myself included, are digging in and living with purpose, it'll help take away the sting of this, our reality. Maybe I'm just a gloating mom, but everyone who's met him has fallen in love with him. Just like anyone who has met your kid has fallen in love with them. When you get married you are telling the world that you are in love. I guess with every word I type, I'm trying to tell the world how utterly in love I am with this little, wonderful, sweet, miraculous man.

Friday, November 24, 2006

Noah had a little acupuncture today from his Uncle Adam, ND. His respirations were above the ventilator the whole time, so that was a really good sign.

Last night Jason's sister, Auntie Tonja "babysat" Noah while Jason and I went home and both slept at the house for the first time since August 2nd. I woke up more exhausted today than I have in the last 4 months because I thought about him all night. I actually fell asleep in his crib with him for about a half an hour this afternoon. Anyway, Uncle Chris and Auntie Terra are spending the night tonight, so we'll have two nights in a row at home. It's nice to get up with Em and have breakfast and read the Bible together. We are very blessed by ALL of our family and friends for the continued opportunities to spend as family at home, off campus, and at the hospital. Posted by Picasa

Thursday, November 23, 2006

We're moving again...
We'll be in room 313, I think, but I'll let you know for sure...the reason for the move is there aren't enough long term kids on our side of the floor, they're on the other side, so for staffing purposes, we're moving. It's been a theme in my life...I've moved around 30 times and I'm not even an Air Force kid!

Another change is that the meeting on Tuesday the 28th is at 1:00pm, not 2:00pm anymore. Also, if you were interested in coming to that, will you shoot me an email at because the docs had only reserved a room adequate for 20 people, most of which are hospital people and I informed them that we were told we could invite anyone we want, so we'd need a bigger room! They are getting a bigger room since with our family alone we'd exceed the 20 person occupancy. So, we really want ANYONE to come to this meeting if you feel strongly about helping us plead Noah's care course, just shoot me an email so I can have an estimate. Thanks! Happy Thanksgiving to all of you!

A Hospital Thanksgiving


This blog cannot contain all for which we are thankful. This computer doesn't have enough memory for it, nor does the Internet. The list goes on and on. No matter how hard any of our lives may be this day or that, I know we can all give thanks to God for our many blessings. Yes I am thankful for what I see, but what I am most thankful for is what I feel...Jason's hand, Emily's smile, Noah's skin, God's peace, and the overwhelming assuredness people all over this earth are praying for Noah AND FOR SO MANY OTHER THINGS, and each prayer is heard by God Almighty, not His secretary, but the King of Kings, the very Creator of the Universe.

 I am thankful I can be thankful and I am thankful I know Who to thank!

May God bless you all in a beautiful, unique way.  One where you would know God's love and peace in the deepest part of your heart. May you be so overwhelmed by God's love that you would not be able to contain it, since it's meant to be paid forward, poured out of us.

Tuesday, November 21, 2006

Here's a mom's feeble attempt at trying to induce urination...the old junior high slumber party trick with the hand in the warm didn't work.

Specific prayer request: physically, please pray for Noah Steven's brain to begin regeneration and communication with his nerves throughout his body. Spiritually, please pray as the Holy Spirit leads you...

For us: endurance, perseverance, Peace that comes from God alone, strength, hope, faith, trust, a little more Peace, etc... Posted by Picasa

Monday, November 20, 2006

Noah has been cathed all day now...tomorrow a urologist will come check him out. I believe he'll have an ultrasound, too. I'll keep you all posted. Thank you all so much for your continued prayers for Noah and our family. Thank you for continuing to spread his story around to people you know who will seriously pray for him. I'm going to bed and it's before midnight! Yay for me!

This morning Noah's bladder was enlarged to the size of a small orange. He had been urinating normally prior to today, but the docs said that at this point his brain is not transmitting the message to his bladder to empty itself. He had to be catheterized at 10am and just had to have it done, again, after 3 attempts, finally switching to a smaller catheter. The docs are still draining it, but it's working. Jason and I are sad that they think it's his brain not transmitting the message...

Anyway, I wanted to tell you guys, too, that next Tuesday, November 28th, at 2pm mountain time, we will have a HUGE meeting with the neurologist, geneticist, ethics, nurses, social workers, AND ANY FRIENDS, FAMILY, NATURAL DOCS, ANYONE INTERESTED IN HIS CASE, are invited to come. It'll be on the 6th floor of the hospital in one of the big conference rooms. Please pray about attending this and if you feel strongly about it, please come. We need ALL the support we can get at this point.

I'll check in later.

Saturday, November 18, 2006

Bobby and Noah

Yesterday my dad snuggled with Noah for quite some time until his knee cramped and fell asleep. My dad has pretty bad knees(docs want him to have them replaced) takes him 5-10 minutes to stand up after kneeling and praying for Noah...he has dropped to his knees many times for our little guy.

Anyway, Friday I was "show and tell" at Emily's preschool. The teacher told them to bring in something for which they were thankful. I asked her what she was going to bring and she said, "YOU!" She wanted me. It took everything for me to choke back the tears when she said that since our time has been so limited since Noah checked into room 306. The sincerity of a child is priceless. I know this because she wanted me even though I literally hadn't showered since Tuesday.

Preschool was enlightening...the 3's & 4's combined for a hand washing demo from the school nurse. Seriously, I am already a germaphobe from living here for 3.5 months, but, the nurse gave all of us this lotion that shows germs under black light. You should have seen all the white masses of germs on hands, fingernails, and creeping up sleeves! Then we all went to the bathroom after being educated on proper scrubbing and everyone tenaciously washed. We returned to the black light where most kids had done 50/50 jobs of removing crud, but HOLY SMOKES, seriously, everyone should adhere to the sick kid policy, that's all I have to say about that! p.s. my hands were nice and clean!

"All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God."
2 Cor 4:18 I share this because it's been obvious in the past three months, but today, it was blatant! We were blessed with meeting a new friend who was here on business and felt compelled to come meet Noah. Upon meeting him and hearing his story, he felt strongly about going to our house. My parents were there and got to meet him. My dad and he had a good talk about their religious roots and as a result, they prayed right there in our family room. We praise God for this! I have to tell you what was going on only 5 miles away while this neat guy was giving his life to Christ...All day Noah's heart rate had been creeping slowly upward. He began to feel warm and he was pretty white and having a bit more labored breathing. After our persistence, the docs ordered another blood analysis because I insisted that his hematocrit (blood count) was lower than they thought. Noah's temp spiked to 103.8, his heart rate was sitting at 189bpm, and he looked pretty lousy. I called my mom who was at the house with my mother-in-love and asked them to start praying. They went in the back bedroom and started praying up a storm. Little did they know they weren't only praying for Noah's healing today but they were praying against a huge attack and scheme to keep this guy from realizing the amazing grace of God's love. When my mom called to tell me that our new friend had left and that he had prayed with my dad, I told her that Noah's heart rate was down to 159bpm, his temp was 100.2 and his color was coming back.

I'd say that the devil was really mad today, how about you?!?!
Huge prayer request...Dr. Tseng came to talk to me tonight about getting a huge meeting together here at the hospital involving administration, the folks from ethics, several docs, etc. You see, in medicine you treat only if you have a diagnosis. Dr. Tseng wants to appeal the ethics of that mindset since no one is doing anything to treat Noah because they can't come up with a diagnosis. He'll push for an IVIg treatment or even pursue the FDA for a compassionate action (see research being done at Boston Children's with a drug called "Omegaven" from Germany for tpn patients) seeing if we can get an umbilical cord stem cell transplant right here in our own back yard! There are three treatments that we could possibly use to help Noah, ONE OF WHICH I ASKED FOR 2 MONTHS AGO...IVIg, plasmapheresis, and hUCSC transplant. What doctors can't wrap their heads around is that Noah from the neck up (MRI) shows one scenario, but from the neck down shows another. In medicine they don't "double diagnose" so that is why everyone is perplexed. The angle the doc will try for is that Noah does demonstrate CIDP neuropathy from the neck down. Anyway, all this to say, please pray for God's will to continue to be done in this situation. Please pray that the big meeting will be able to take place prior to Thanksgiving and that all who are supposed to be there will be. And, finally, please pray that we would be used in this situation however we are supposed to be for God's glory alone! And, of course, the obvious, Noah's miracle! You guys all ROCK! Good night!

Thursday, November 16, 2006

When I used to nurse Noah in the middle of the night, I would cozy up in our big green chair with a 32oz jug of water and mostly just stare at him. Since he was a very slow eater, I would dim the lights and use the time to catch up on lots of reading. My three choices were: the Bible, Legacy of Prayer by Jennifer Kennedy Dean, and a book about healthy sleep habits for my kids. I read the Bible to Noah as if he were grasping every word. As a result of reading Legacy of Prayer, I prayed for Noah and Emily, the calls of God on their lives, their walks with God, their spouses and the generations that they would help bring forth on the earth. As far as the healthy sleep habit book...Noah and Emily were on great sleep routines, key word being "were". The anxiety I had about making sure he got on a sleep schedule and had ample sleep throughout the day and night...well, Noah sleeps probably 23 hours a day, so, I must have really gotten the message of that book! My point is...good book, good information, definitely applicable, but if I could turn back time (thank you, Cher) I would skip book number 3 and mostly just stare...

Wednesday, November 15, 2006

It is humbling for me to post this blog entry, but at the persistence of several friends, here goes…

Many have asked us about the reality of some of the costs incurred thus far from outside lab work and doctors out of our insurance network as well as those costs unknown in our future with Noah’s health, equipment, home care and treatment. As a result, these friends want to help support our family financially. This is a collaborative effort and concern and we are truly humbled by the offer. I am especially blown by the friends heading up the coordination of this, one of which is Laura Huene, who 5 days prior to Noah’s grand arrival on June 10th, delivered her 4th child, a beautiful baby girl named Pearl who within one hour on this earth headed quickly to her Father’s arms! You can read about Pearl and Laura and Josh’s journey in an article she wrote at:

Other friends have had multiple miscarriages and tragedies of their own! We are humbled that in the midst of their own pain and healing they are reaching out to us in this way. Anyway, we have set up a benefit fund at Wells Fargo for “Noah Steven Graves”. Any further inquiries from this point will be fielded by Laura.

Her email address is: if you are interested in knowing more about her desire to fund raise for Noah. In the subject line of the email, please put “Noah Steven” and she will respond to you as soon as she can.

Jason and I are beside ourselves with this offer. We admit we cannot do this alone, just as we haven’t from the beginning. We can constantly feel your support through prayer, visits, letters, meals, calls, emails and encouragement. “Thank you” is truly inadequate, but we mean it from our deepest hearts!

Tuesday, November 14, 2006

Why can't I just fix it?!

It took everything in me to not first of all, bawl, and second, reach out and pick up the 8 week old baby boy I saw today at the Post Office. It hit me like a ton of bricks. I didn't want that lady's baby, I just longed for a minute for the world to stop so I could have my baby boy with me, doing errands...I wouldn't have even seen that peaceful bundle had the rest of my day not been totally jacked...
You see, the last two days I've been acting like I'm in college, during finals week, the night before the big deadline. I started a non-profit organization called Bevy, Inc with some girlfriends. In a nutshell, it's like Extreme Home Makeover on a super small scale and we do it for women in need and other non-profits that help women in need. WELL, I had non-profit status, just not my 501(c)(3) status yet. The IRS sent me a letter dated June 10th telling me additional information they wanted by August 2006, like additional Board of Director members, Conflict of Interest Policy regarding salary (we don't have any money, so no one has a salary-minor detail they overlooked), etc. So, of course, June 10th is the day Noah was born, so, the paper was set aside. Then, on August 15th I got a notice saying that I had until November 15th to get all my paperwork in or they'd close the case. Yeah, because in August I was even thinking about anything other than lungs collapsing and diarrhea killing mice at the CDC. Anyway, all that to say that I waited until this week while Jason's out of town on business and we're trying to send out MRI's to other places for second opinions, to get my act together. I headed over to FedEx to ship off the masterpiece, and, of course they don't ship to P.O. probably ALL knew that, but I most certainly didn't. Well, I found this out after I had taken the time to print 4 copies for the Board members. I looked at the clock and called Ohio, where the office is, at 4:40pm their time. Of course, the guy who I need to speak to regarding an alternate mailing address is gone for the day...his "tour of duty" is over at 4:45pm (shhhh, don't tell he skipped out early). Anyway, I decide to send a fax so that at least that copy is on his desk by November 15, my deadline, if I can't get to the USPS Office in time. The fax takes 10 minutes to transmit. The FedEx guy tells me where there is a PO right by the hospital. I head straight there and they closed at 3pm. What's up with that? So, I drove over to the PO by our house, thinking that it's all meaningless...seriously, what the heck am I doing getting worked up about my IRS deadline when in reality, I don't need anyone's freaking permission to reach out to women in need...but, thankfully their overnight drop off time wasn't until 5pm. All that to say, hopefully we'll get our 501(c)(3) status, and, for the first time in 5 months, I looked longingly at another woman's baby...don't get me wrong, I don't look at every other baby and feel sorry for myself. I honestly am so excited for that little one's life and the joy their parents feel. I'm just like anybody else in that area. But today, all day, I just felt sad and grieved at the whole situation. The reality is is that no one knows anything. The little guy who has melted my heart started out with a rash, diarrhea, swollen lymph nodes and nystagmus. Today he is laying in a hospital bed in very critical condition on life support and I think that sucks.

I included these pictures because it's a snapshot into the joy we all had becoming a bigger family. I know I can't look back and make anything different. I would literally die for my kids, which brings up my current faith reality isn't lining up with my faith...I don't want to "do" life without Noah in it. I just don't want to. No one should have to. Jason is the best dad in the whole world! Emily loves being a big sister, even though her experience is skewed.
God made Noah. He called him out of the womb. I am honored to know him and humbled to be his mom. It just doesn't change the nauseous feeling I have that I haven't done enough for him. I really am desperate!
Anyway, I know I am a "fixer" and I just want to fix it! Why can't I just fix it!?!?! Posted by Picasa

Sunday, November 12, 2006


I am writing President Bush and Vice President Cheney a letter...I've never done anything like that before, but once your life is affected by politics, I have to admit, it's interesting how intense you can feel about something...I am talking about cord blood stem cell transplants. I am educating myself on the topic, and before anyone freaks out, they are umbilical cords donated by families of full term healthy babies, NOT aborted fetuses.

If you've recently had a baby or are currently pregnant, you have been sent fliers in the mail regarding saving your child's umbilical cord for future use or donation. Because it's so new, most of us, including myself, have overlooked the "need" and have opted out of the option. You see, the FDA and many doctors only believe that hUCSC transplants help with leukemia and some forms of anemia. That is just the other countries there has been great documented success using cord blood stem cells for many other ailments. In fact, an expert in the field, Dr. Steenblock (book, Umbilical Cord Stem Cell Therapy, The Gift of Healing from Healthy Newborns) recently met with the President and informed him of the great results they have had with these transplants in people, especially children, with cerebral palsy, early stage ALS, some forms of MS, and even leukodystrophies (which is what they think Noah has, though one that has not yet been discovered). Bush was encouraged, though frustrated because his cabinet had not shared this information with him.

People who are not doing the research have lumped these transplants with controversial embryonic stem cell transplants. This is just not the case! Obviously Jason and I would not want another child sacrificed by abortion so our child could live…Heaven is a much better place. So, like I said, I'm writing a letter because Jason and I are considering this procedure for Noah since no one else here in the US can do anything for him. Now, please know my heart, I'm not going to rant at the President, express my political stance, or claim that I ever want to be in their positions of power...I pray for them...leading a nation is likely a very trying job (*understatement*). I’m writing because this may entail a trip across the border…The fact that this kind of transplant is approved in the US for only two ailments, neither of which is a leukodystrophy, is frustrating and so limited in thinking because it is a simple procedure, but taking Noah on a private jet with a medical team…that’s the main risk!

The “transplant” is like a blood transfusion, of which he has had three, and it is administered through his PICC line. It’s approved in the US. Our insurance could cover it if people making rules would do the research…He could just have this done 5 miles from his house in his hospital bed…

We usually take an annual trip to Mexico, either for missions or for a little R&R, and the next one, I told Jason, I wanted the kids to come along…we just didn’t think we’d be the ones going along with Noah, AND, how sad to have to leave our soil…the land of "freedom"…Anyway, I encourage you to do some research of your own on this topic if you are one that is anti-stem cell research. There is an alternative to embryonic stem cells and it lies in trash cans of delivery rooms across the nation. We actually did donate Noah’s cord to the UCHSMC for a diabetes screen. His own cord wouldn’t have helped him in this case, though, that’s why it’s a “transplant”.

Two months ago I had a feeling that Noah would need something radical done with his blood, one, because of a scripture that was given to me from someone and two, because of research I had done regarding a theory I have…When I asked the docs here about it they said the only treatment would be a total blood exchange and you can’t just opt for a total blood exchange, IvIG or plasmapheresis. Okay, but you don’t know what’s wrong with him. It may help him! Treating him like hospice...No thanks! God brought Noah into this world for a purpose. He’s alive. He’s stable. He just isn’t walking in abundant health YET! He will and when he does, I pray it will change the face of medicine forever! Noah is not just 1 in 5 billion. There are a lot of children that are sick, that die without the docs ever knowing why…I pray that his little life will impact the lives of so many other children fighting for theirs.

Friday, November 10, 2006

Yay! Happy 5 month birthday to Noah! If this is your birthday or anniversary month, Happy Day to you, too! Every day is a blessing from the Lord. One of my dearest friends turned 50 the very beginning of this month. Whether you are 5 months or 50, celebrate, however, wherever, celebrate and know others are celebrating you, too!

Nothing new here, really. Noah is as cute as ever. The doctors still know nothing. The nurses still rock. Hospital living isn't all that bad, but I know it won't last forever! Jason and I are thinking of starting a Bible study here since we can't really leave to do one consistently. Noah is very weak...he moves his left thumb and his head a little bit. His skin had cleared up beautifully while I was away but it is crusty again. I seriously have a theory, not feeling sorry for myself, but I think he's allergic to me...I don't know if that's medically possible, but his skin gets worse when I'm around him, he reacted to my breast milk, when we were at home back in the day, he had a terrible rash where his skin was in contact with mine...

Anyway, I am thinking aloud, which is what blogs are for, but perhaps there's something there...

Thursday, November 09, 2006

From the mouths of babes...
"O LORD, our Lord, how majestic is your name in all the earth!
You have set your glory above the heavens.
From the lips of children and infants you have ordained praise
because of your enemies, to silence the foe and the avenger."
Psalm 8:1-2

I love reading the story in the Bible to Emily about when the children were being brought to Jesus and His disciples rebuked them and told them to go away. Man, was Jesus mad! It said He was indignant! That's not a subtle feeling, it's intense! Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these." Then it says He took the children in His arms and blessed them. WOW! The kingdom of heaven belongs to my children and to yours, too! Hello! That is AWESOME! That is provision! That is the Son of God prophesying about the future generation. That is Jesus rebuking His disciples, men with awesome hearts but foggy intentions, (can you say "control issues") for hindering children from coming to Him. I have to ask myself if there are things that I am doing to hinder my children from fullness in Christ...I don't want to be a parent who raises children to be seen but not heard! NOT WHEN THEIR LIPS ARE ORDAINED WITH PRAISES FOR GOD! It says their praises will silence the that is powerful stuff!

We are told on a daily basis that "our kids pray for Noah every night...our kids pray for Baby Noah when we eat...Lord, please bless Baby Noah". Em's best friend prayed for Noah a few days before I found out I was pregnant. She and her mom were praying before bed and she said, "Dear Lord, please bless the baby in Mrs. Graves' tummy". We are so humbled that you all are praying, don't get me wrong, but that this generation is praying for its own...SO AWESOME! Posted by Picasa

Wednesday, November 08, 2006

Well, we just passed the 3 month mark on the 3 days Noah will be 5 months old and will have spent more of his life in the hospital than not...Jason and I are tired but are NO WHERE NEAR going to give up on our little guy. Noah continues to draw our hearts deeper with God and deeper for each other. We are humbled by this experience and are grateful to know we are not alone on this journey. We know that God's presence is constant as we are reminded of it through His Word and through You. Thank you for your encouragement to us in more ways than we can begin to realize or acknowledge. The reality in the physical realm is that Noah is on life support...he is really weak and tired. The reality in the spiritual realm is miles deeper, we have only begun to unearth it. So, we'll continue to press on and trust God. And to those of you who in your hearts are testing God and saying, "Will they praise Him if Noah dies?" TO YOU WE SAY, WE WILL! GOD GETS THE GLORY EITHER WAY! It’s so obvious He gets it either way!!!

This reminds me to share my 2 cents regarding recent developments within the Body of Christ...the only difference between me and you and Pastor Haggard is you and I aren't in the public eye, but we sin and our sins are the same. Instead of pointing fingers or forming opinions, realize that God is sifting His Church, preparing the Bride of Christ. If people actually fall away because of what has happened, their intimacy with Christ wasn't their own and it didn't run deep. Jesus wasn't blowing sunshine at us when He said not to judge and to worry about the plank in our own eye. He knew stuff like this would happen and He knew how people would react. There is a great sifting going on...

Sunday, November 05, 2006

Our handsome guy...
Leaving for four days was good because I was able to see improvement. Noah's skin is terrific! I'd say there's a 97% improvement! No more crusty, red, oozy, or dry cracky stuff! It's truly amazing!

As far as his care goes, we are giving him supplements that include food at the cellular level, natural supplements, herbs that help kill the bacteria, anti-fungal meds, and soluble fiber from my friend that encapsulates fat where toxins are stored and takes it out of the body. He is being sponsored by a local non-profit that supplies nutrients to medically fragile children. We are going to a testimony night on Friday the 10th at the Convention Center to hear more about it, if anyone is interested.

The hospital is doing its part trying to get things rolling regarding home care and equipment. We'll be applying for Medicare and Medicaid which speeds the process along. We have insurance, but it runs out next November, so government assistance is crucial.

We are increasing Noah's antifungal tomorrow. He's got some thrush on his tongue, so that increase should help. Some of you have asked about NALD, but Noah tested negative for that particular leukodystrophy...that is what keeps the docs on their toes...everything they have thought it was, it wasn't...that's why our own theories seem to hold more and more weight...

More updates tomorrow, but now, it's family time. Have a wonderful new week with family, friends, co-workers, neighbors, and strangers. Ask God how He wants to use you this week and let go and watch Him work! Posted by Picasa
Here we are in the same room, at the same time, celebrating a glorious day for our dear friends! Thanks for helping make it possible! Posted by Picasa
Ladies and Gentlemen, boys and girls, here's my best friend, Mrs. D!
Molly was a beautiful bride! She enjoyed every minute of the stress, just celebration, and it went off without a hitch! I was honored to be a part of such a special day. Jason and I danced the night away and laughed HARD with old friends from college. It was a blast! Molly had kept herself 36 years to meet this awesome man of God, so I wouldn't have missed it for the world! What a testimony in this day and age! Before I left for KC, God showed me a diamond in the side of a it isn't gorgeous, yet it is the most sought after treasure on earth waiting to be formed with facets to show its radiance. He showed me that Molly wasn't a diamond in the rough but a beautiful, hand crafted jewel in her Master's hand. He showed me that Molly, during the last several years of waiting for a husband wasn't sitting around waiting for him to come. She wasn't pursuing a man but instead intimacy with her Lord, her Maker, her Jeweler. As she sought His Word with diligence, His will with abandonment, and His face with reverance, He increased the facets, causing Molly to be more and more brilliant as His light shone upon her. As a result, Stevie is reaping the promises of many scriptures, including Prov. 12:4, 19:14, 18:22, and 31:30.

One of the coolest things about this is the parallel to the Bride of Christ getting ready and preparing herself for the Lord's return. Are we sitting around, waiting for Him to come get us, or are each of us allowing ourselves to be molded in the Master's hand, preparing our hearts for that Awesome Day? Only God knows the hour, even the Groom waits for the unveiling...
This is Stevie, Molly's man of God. This was on the way to the church. He is SO in love with my best friend! He's from a wonderful family that loves Molly to pieces. Jason and I were so humbled to meet them and find out that they have been praying for Noah's healing along with all of you. Seriously, meeting Molly's extended family, Stevie's family and all of their friends that have been praying, you know, putting faces to the comments, was overwhelming at times! Thanks for all the prayers while I was away...I thought about Noah but never once worried or had anxiety. It was a Beautiful Day! Posted by Picasa