Sunday, December 31, 2006

The top picture is of us in the stands but then we realized we could be, we turned around and had the field as proof in the background. This is my account...We really enjoyed the game today, though they are out of the playoffs. There were over 70,000 fans in attendance. Speaking of fans, I would say that MANY are faithful, but I must say that there are some that are very fickle! There was a guy sitting near us who was hooping and hollering, cheering them on, but when there was a fumble or penalty, then he'd curse like a sailor and call on my Savior. I know it's sports, okay, but if you're a fan, then you gotta love 'em whether they win or lose! Pick a team and stay faithful! So, anyway, I like football, but I have to admit that my favorite part was when the 4 F-15's flew over the field at kickoff. Ever since Top Gun, I've been a sucker for loud jets...It was a perfect sunny winter day here in Denver and our seats were right in it, so that was AWESOME because the people sitting on the west side looked really, really cold! When the sun went behind the stadium, we bundled up and enjoyed the action. We were in great seats, positioned perfectly to see the sun go down and light up the back of the front range. Glorious mountains!

My scripture for the year...Therefore, since we are surrounded by such a great cloud of witnesses, 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, who for the joy set before him, endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart. Hebrews 12:1-3

I've been meditating on this scripture a lot lately...I'm asking God to bring to light everything that hinders and entangles me from being the woman, wife, mom, that I am called to be. Besides the Word of God, a book called A Minute of Margin by Richard A. Swenson, MD, has helped me in this area of my life, though I have not attained it...Anyway, I've realized that life on this earth has become quite complicated since Jesus' days...actually since Noah's days. I want to serve Him simply...I want to love people the way He did, I want to pray for them to be healed, reconciled to God, restored to wholeness. I want to follow His directions quite simply, without the complications, without the distractions...I'm not making a New Year's resolution, as Jesus says to take one day at a time. I'm making a daily plan of passionate just happens to be a New Year.
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Saturday, December 30, 2006

The last 5 months of hospital living caught up to me and I got the sniffles. Good thing they have masks on every corner. Today it's gone, thanks to mega doses of vitamins and herbs. Anyway, just thought I'd add pictures of the cutie patooties...Noah's posing for the camera. Those are the PICC poke sites you see on his little arm that were unsuccessful. The PICC is in his right upper arm. Then, there's the cute guy with the thick brown curly hair...Of course, the girl in the chair with him is the same kid, who the day before, had three staples put in her head. You can see she's really traumatized...

My sister spent the last two nights here at the hospital so Jason and I could be home with Em, our wounded little soldier. Last night I was conscious during my sleep of holding Noah. Every time I turned over, I was "positioning" him in my arms. Well, at some point I started dreaming about holding him. I dreamt that my sister and I were sitting in the back pew of a Catholic church. I was holding Noah in his little diaper and I moved him from one arm to the other. All of a sudden, he grabbed my fingers, kicked his legs and started bouncing on my lap. In the dream my sister and I started screaming and then shouting, "Praise God! Praise the Lord! Thank you, Jesus!" I woke up doing the same. It was a pretty great dream...It's also cool to know that when I am awake and when I lie down, I am praising Him...

Today, I discovered something new and exciting about Noah that I never knew...he's very ticklish! He has a vibrating alligator toy that we usually wiggle on his cheeks by his mouth. Well, I put it on his head and he wiggled his neck, then I put it in his ear and he turned his head toward it, and finally, I put the gator on his rib cage and he shrugged his shoulders, moved his torso and moved his arms, ever so slightly. It may not seem like a lot, but it was our little treasure today. So cute...

Tomorrow we've been given a gift from a sweet friend who works for the Broncos to attend their last season game. I had to be honest and ask her who they were playing because I was so out of the loop that I hadn't even realized that Saddam was being executed, that Gerald Ford had died, or heck, that we were going to have the second blizzard...she understood my not being up on who's playing who, and the offer still stands, so, we're looking forward to some time off campus together.

Thursday, December 28, 2006

Today Jason and I got to live out every parent's dream...we had TWO kids in the hospital, and one was not a visitor!!!

Em fell down the stairs to our basement and headed to TCH Denver with daddy and Nana for staples in her head. She was really brave. She told the nurse that she didn't care that it would hurt. She said, "Just do it."
The nurse gave her some numbing solution and we waited for a half hour while playing tic tac toe and telling stories about Emily's brave adventures in the ED.

Meanwhile, in the fluoroscopy room down the hallway in radiology, Noah was getting his new PICC line inserted. Jason and I couldn't be in the procedure because they view it as semi-surgical, so we were both with Emily.

Back to the ED...the nurse came in to clean Emily's wound. I asked her how long staples would need to be in Em's head. She said, "5 to 7 days"...Emily said, "I'd rather it be 5 days..." Anyway, I held Em's hands really tightly and the nurse put 3 staples in...end of story. We did the all out parental over indulgence protocol with ice cream, popcorn, a stuffed animal. THIS IS HOW ALL HOSPITAL VISITS SHOULD GO...

Back to fluoroscopy...we snuggled Em up in her pink blankie and headed down the hall to Noah's procedure room. We waited about 5 minutes and the nurse came out to let us know Noah's PICC line went in without any problems. We all headed up as a family to room 313 to watch the second blizzard of the season set in... Posted by Picasa

Thank you, Watertown Family Worship Center, for praying fervently for Noah today, and always...and thank you for the physical representatives, Phil and Gail and Stacia, who were able to be your "hands". The prayer time for him goes until midnight for those who want to join with them...(I wrote this part of the post earlier...I know you are all praying, so, thanks! Could I please add to your prayer time a girl named Anna that is 4 and needs a MIRACLE! She has an inoperable tumor in her brain stem and the docs have "given" her an amount of days...I hope to go pray for her this week. Please pray for God to move mightily in her life and the life of her family. Thanks!)

Em and I were talking today about prayer. I told her that I pray all the time. She thought about it a minute and said, "Well, when we are eating and we're all talking, you can't be praying..." I told her that my spirit always prays and that's just not something I can "turn off". It seemed to satisfy as she didn't say anything else about it...Ephesians 6:18

Anyway, today my most handsome little guy had a granuloma "burned" off by a nice ENT 4th year resident named "Frank Rodriquez"...just kidding, his name was Jeff, but I was giving him a hard time because last time Noah's granuloma burn session had a slight mishap and the "ooze" caused a chemical burn on his skin...he was wondering about me "dropping" his name to my sister's ENT for when he is done with his residency in a year and a half...I said if he didn't burn him this time, I'd drop the was funny, I guess you had to be there/here.

Today, after friends had already arrived for a visit with their two children UNDER 12, we learned about the seasonal rule regarding visitors...apparently the new sign on the door that the CA was posting states that it is RSV season and visitors under 12 that are not family are not allowed, SO, I wanted to let you all know in case you were thinking of coming for a visit and you are younger than 12...let's pray that there's no such thing as RSV season ANYMORE! Heck, I'm praying that hospital's go out of business because there aren't sick people ANYMORE!

Anyway, Noah's getting a new PICC line inserted as I write. The one he had in his ankle for 3 months got caught under the adhesive dressing and as we did his leg exercises, it pulled on it and worked it right out. Since Noah's muscle tone is low, his veins are very difficult to find. She has to use an ultrasound machine to find them...Basically, what can be a simple procedure is very tricky with our little man. Ashley and I prayed for the PICC nurse, so we're trusting God to do the rest...(update as of 12:45am...the PICC line insertion did not go, but the other one is still in him 17cm, it was at 30cm, but it's still up in his leg pretty good, so another nurse will take a look at it in the a.m. I'll keep you posted. The picture of the blue bed has a little skin peeking through...that's Noah's arm...)

Anyway, speaking of God, He is so Great! He has positioned Himself in such a way that Noah's healing HAS to be MIRACULOUS and the ONLY ONE that can heal him is Him...we trust Him. He wants to be sure it's quite clear that no man receive the glory...He is good and He sees the bigger picture. In case some of you think this is the first I've realized this, it isn't...I've known it since the first moment we walked in, but in case any of you are still hoping there's a human doctor that has a cure...there isn't. I'm not speaking negatively, please understand. I can't find the negativity in knowing beyond a shadow of a doubt that Noah's Healer is the Creator of the Universe. I have more hope in Him than anyone or anything! Anyone who knows me knows I can't lie and I don't blow sunshine at people just so it sounds I mentioned before, truth can come across harsh from me, but life is too short to speak anything but. The truth is, God's word says, "Surely He took up our infirmities and carried our sorrows, yet we considered Him stricken by God, smitten by Him, and afflicted. But He was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon Him, and by His wounds we are healed." Isaiah 53:4-5 My truth is my God, it's my faith, it's my hope and I hope it's all I ever speak! I'm obviously praying for Noah's miraculous healing to happen on this earth, but if it happens in God's presence, I'd say Noah most certainly has already defeated satan's purpose in any of this, of that I am quite confident! I am as proud as any mom could ever be...

From my dear friend, Heather, I received a Sara Groves CD tonight, and have been replaying the song "Add to the Beauty". I want to add to the beauty of what God wants to do on this earth. I want to walk in the fullness of what He has for me, for us, for our family, for the Bride of Christ. If, when people meet me, they meet ME, I want my heart to be grieved because they were meant to meet God... Posted by Picasa

Monday, December 25, 2006

Wow, we've had full days of blessings and encouragement! Thank you all for making this Christmas such a great time as a family, not only blood relatives but I mean our family across the nation and around the globe! Thank you for the overflowing generosity that has poured into our lives in so many ways! We were blown by the financial support in Noah's benefit fund! We were humbled by the nation wide care package brought to us by our dear friends, the Goodmans! We were nourished by the wonderful meal from Whole Foods provided by Jason's home church in South Dakota, Watertown Family Worship Center. We were flabbergasted and humbled by the gift of money they sent with Jason's mom!!! We've been so encouraged by the visits and calls. Noah has gotten visits from so many kind hearted volunteers. There are the boys from fire station 8 up the street (see picture below), Ace Young and his family (see American Idol) came and serenaded Noah this afternoon (he was a patient here as a kid and has come to sing carols to kids for 9 years now...), many gifts from families that had kids here during the holidays at one time or another...the list goes on. One girl who had met Noah while he was in the PICU asked her family for money for Christmas and then brought it up and gave it to Jason for Noah! The carolers, the serving...this whole experience has been the true spirit of Christmas for me. It hasn't given me the nasty taste in my mouth that I've had in previous years of consumerism and American over abundance. Instead, it's been just right! I can't remember if I've written it or not in a previous blog, but as contrary to circumstance as you can get, this has been the best Christmas celebration I personally have experienced in a lifetime...I am a very blessed woman. Thank you, thank you, thank you! I have the most amazing husband in the whole wide world, I love my two beautiful children deeper than I thought I was fathomable, the "family" I feel a part of is ever expanding, I am in awe of God's love for not only me, but His unconditional love for the whole world like never before, I mean, I've believed in Him my whole life, celebrated the "birth of baby Jesus", but it's real, it's good, it's true...I know my purpose on this earth, wholeheartedly for the first time in my own existence and there's not one part of it that has to do with me! I love it! Don't get me wrong, my friend Nanc' in MN always said, it's not about you, so I got that, but I've just never been in more of a place of surrender than I am today, at 11:59 pm on Christmas night in Denver, Colorado. I want more than anything for life on earth without God's physical presence to be over! I want Jesus to come and get us! I am over thinking that this world has anything to offer except good, temporary pleasure. I, along with all of you, was designed to live in the physical presence of God. Remember the Garden? That's how it was supposed to be...that's where I long to be because there there is no sadness, no hurting, no dying, no questions or's total freedom, ultimate fulfillment, and the fullness of joy. I think everyone should want to go, too (not a new idea, Jesus had it first...) so...let's get busy! I can't wait to have the big reunion in the sky!Posted by Picasa
Here's Em and her miraculous Uncle Dan from RI. Just this may he had brain surgery for an aneurysm and was home, installing the internet DAYS later! He was Em's flavor of the week. He and my sister made her a great name plaque for her room. Noah's is in room 313 with him.
Here's Em and Nana enjoying one another. Our yummy feast that was generously donated is behind them.
Here's another family Christmas photo. My little sister and her fiance came later, so aren't pictured. I'll post an official "engagement picture" soon.
And here is Noah munching on his very first candy cane from Hammonds here in Colorado. Notice my really cool headband and pillow from my friend Kim that sells stuff on The pillow, fyi, is my new "grown up" Pooh Bear. You see, I slept with Pooh for 30.5 years (didn't go on the honeymoon but has been to Europe, Siberia, South America, Mexico and all over the USA...) until Emily was born, but had to stop because I kept thinking Pooh was Em, though I never slept with her, and I thought I was smothering her, so, my new pillow is perfect since neither Em or Noah is shaped like it, so I shouldn't mistake it for them...THANKS Kim! Posted by Picasa

Sunday, December 24, 2006

A Hospital Christmas

The other night Em informed us she wanted alone time with her brother...Jason pulled the curtains, she hopped up in bed with him and she drew pictures while he "watched" Baby Einstein. She's the best big sister in the whole wide world!

Today I was sitting on my bathroom floor bawling...Em came in and said, "I didn't realize you were crying, Mom!" I informed her I had just started...anyway, I asked her what she thought if Noah went to heaven to see Jesus. She said it would be okay. Later, though, she got kind of mad about it in the car and said, "No! I want to marry my brother! I can't if he's in heaven!" I told her she couldn't marry him any way, how God has some rules about marrying our siblings, but how their love was different, one that could never be taken away or conditional, regardless of where we live...

Anyway, it's the dawn of Christmas Eve and we are looking forward to celebrating the birth of Christ as a family. Thank you ALL for blessing us with a wonderful Christmas this year! We are humbled by the outpouring of cards, gifts, meals, visits, etc. We pray this Christmas would be meaningful and rich for you, too, and the people around you. If you celebrate Christmas for the True meaning, I have no doubt it will be a beautiful, life-altering experience. We pray for God's PEACE to fill your hearts and minds with the Joy and Life He freely gives. Eternal life is a free gift through Jesus Christ, the very first Christmas present to anyone who would believe...

You know, "people" are "buying" stars and naming them after themselves or someone they know (by the way, WHO is selling them and making the profits???)...God just went ahead and put the biggest one in the sky the night Jesus was born, and wise men still follow Him... Posted by Picasa

Friday, December 22, 2006

Em and I decided to brave the blizzard last night and drive home from the hospital. We did just fine until we hit the driveway and got stuck! I had to reverse it a few times and then we catapulted into the garage just shy of shooting through the back wall into the yard! Last night we built a fort in the basement (the first picture) and told stories. Today we bundled up and tackled the driveway so we could at least back out to the street so we could go see the boys at the hospital. When snow is thigh high, it's not the time to start "working out".

Anyway, the other two pictures are of Noah having floor time. The nurses were trying to fix his dressing on his PICC line tonight, so that's why they are all sitting around him while he's on the floor. We had good snuggle time and I massaged his back and head for a while. And yes, people, his face is smooth and crust free, once again! I'm holding back on the smothering kisses so I'm not the culprit, but I am smooching his head and knees and elbows and toes, just shying away from the cheeks...I just can't get enough!!!

So, this is what I've been thinking lately...
A LONG time ago, I think I was in junior high, I wanted to be a doctor for two reasons: I wanted a Mercedes and I wanted to heal people. I am over wanting a Mercedes, though they are fine pieces of machinery, but I am NOT over wanting to heal people. Well, I decided to go pre-med in college, but my freshman year I failed chemistry. I did get an A in lab, which is something...anyway, I took it again to replace the F and got a D! Hello, God, how am I supposed to be a doctor if I can't even pass chemistry??!! He answered quite loudly with a, "You don't have to be a doctor to heal people. You can pray for them." Okay! Nice! I quickly withdrew from biology, too! I changed my major to theology with a missions emphasis and minored in Spanish. I wanted to study something I was good at, and to me, that meant studying people and cultures and God's word. From that time on, the desire to see people healed has never left my heart. Side note, Jason's name means "healer". He has always wanted to be rich, not so we could have "stuff" but so we could GO wherever God said GO. My name means "rich". Anyway, all of this to say...Jason and I have gone overseas a lot. We've always had a heart for missions. We've always known we'd travel as a family. Well, God gave us THIS family. We will not be separated. SOOO, we may not look like your conventional missionaries, but we will NOT let the devil get ANY part of the victory in this, so, if we have to get a jet with a medical team and oxygen tanks, by golly we'll do it! NOTHING WILL HOLD US BACK FROM PROCLAIMING THAT JESUS IS IN LOVE WITH THE WHOLE WIDE WORLD AND THAT HE DIED ON THE CROSS AND DEFEATED DEATH, CARRIED OUR DISEASES AND GIVES EVERYONE WHO WOULD BELIEVE ETERNAL LIFE. So, I may sound crazy, but I've heard others have done crazier...Jesus left a really sweet pad to come here for a bunch of that's WAY out there! Arthur Blessitt's been flying around the world for years with brain aneurysms galore and he doesn't even take a medical team! I'm not saying it'll happen, but we are willing to GO wherever He says GO!

Wednesday, December 20, 2006

So, here's the allergy panel as promised...
Regarding his total IgE allergen count, out of a normal range of 0-100, Noah's number was 269. The individual allergen range is 0-0.34. Noah's were as follows:

Egg White: 4.96
Milk: 6.41
Soybean: 9.59
Corn, Maize: 1.92
Walnut: 3.63
Wheat: 1.27
And the BIG DOG.....
Peanut: 26.30

He also showed allergies to Cod, Shrimp, Clam, and, no seafood chowder for Noah this Christmas Eve. But seriously, why he's producing such high amounts of antibodies is perplexing. Hopefully there's an "expert" that can shed a little light on the situation...especially since he hasn't had a lot of PBJ's yet or big jugs of milk to wash it down. I did find a an article on line about allergies to peanut proteins being passed during pregnancy. When I was pregnant, I had a whey protein smoothie with almond milk and a scoop of organic peanut butter EVERYDAY. Once he was born, I backed off on those, suspecting they weren't good for him, but ate Odwalla peanut chocolate chip bars, instead. I asked a PICU doc 4 months ago if he could have a horrible allergy to peanuts, since that was the one food that was constant in the picture through my breast milk, but he said NO...

Anyway, the allergists work out of National Jewish Hospital, and, since there's literally a blizzard outside that is due to last through tomorrow, though NJH is only 3 miles away, there will be no discussion of allergies seems strange to me that there aren't allergy specialists at Children's since lots of children have allergies...

My sister and her family were supposed to arrive today from Rhode Island, but are stuck in Baltimore for now...I didn't even know it was supposed to snow, as I'm not really keeping up on the news these days, but I opened the blinds this morning and there was a white out. My little sister spun out going only 30 mph on I-25 across 4 lanes of traffic this morning, but THANK GOD, everyone behind her slowed to a stop. Noah's room is north facing, so it is covered in ice and I can barely make out the parking garage 50 feet away. I guess if you need to be stuck somewhere in a blizzard and your health isn't optimal, well, I suppose a hospital is a decent place to be...Jason and I are still trying to decide if one of us should take Em home or if we should all stay here and hang out as a family all night...I'll let you know what we decided tomorrow!

Tuesday, December 19, 2006

Here's our Christmas picture...
Although this has been the most difficult year of our lives, it has also been one of the best as we have learned so much about the character of God and the way He works through people to show love. We have been on the receiving end of that love more than we could have even imagined this year. Thank you, all who have prayed and continue to pray, and to those who continue to spread the has humbled our hearts, and for that we are grateful. Countries around the globe keep popping up on Noah's blog counter. We sat tonight as a family reading love letters and looking at pictures from the Seoul, Korea class that has been praying for Noah so faithfully. We were in tears because of the purity of heart expressed in their letters. Thank you, Ms. Kimie's class, for the beautiful art and loving and encouraging words. That is just one glimpse of the outpouring of love you have all shown us. Thank you for being an integral part of our lives. And, although we know this is EXTREMELY emotional and often times draining, thank you ALL for choosing to walk this road with us. We know we are not alone...We know we are loved...we are humbled because of it and we pray that somehow, some day, we are able to repay and bless all of you for how you have supported us in countless ways on this daily journey.
Today we learned that from Noah's allergy blood panel he is allergic to a plethora of things. I'll be able to give specifics tomorrow as I don't know them now, but the doc was quite surprised. Some she mentioned were egg, soy, peanut, but I'll give more info when I learn them all. Imagine, they weren't even going to do allergy testing because babies don't develop them until they are a little older...
Anyway, Wednesday at 10:30am Noah will have a benign biopsy from his rectum to see what his nerves are doing down there since his bowels have slowed a bit and if it can shed light to the picture. They said they can do it bedside, so that is good. Yesterday in the meeting the neurologist was pushing the brain biopsy, saying he'd do it at this point for his child, but in the same breath said Noah was going to die anyway. I said, "You want the brain biopsy for curiosity sake because we don't want an autopsy, so it's as close as you'll get to one..." The last I looked, only God numbers our thing is for sure, if I were a doctor, I wouldn't "give" people X number of days to's a bit out of the job qualifications. We are grateful for every day we have had with Noah and we look forward to every new day with him. When he dies, he dies, just like you and me. We aren't in charge of it, therefore we have to live life to the full, for God's glory, with His will in mind. If I get to the end of my life and look back and see I've lived it all for myself, I will have failed my mission, my purpose. Everything happens for a reason. Will I have been true?

Monday, December 18, 2006

Do you think that when God created all the animals, He formed them out of warmed Tootsie Rolls? That would have been something to see, but I think the way He did it was probably WAY cooler...Anyway, here are the other two pictures that didn't fit in the next post. I love this one of Em and Noah...she was SOOOO excited to get a little brother! She really is great with him!
Today's care conference was nothing different than the others in that it is already established that there is nothing that the hospital or the Mayo, as we found out today, can do for Noah. We weren't there to really discuss that, but boy, from the one doc, was it ever re-emphasized, to which I replied, "We aren't ready to say goodbye to Noah, so I want to be assured that he's still being treated equally as a human being. I want to know he's still getting optimal care and that he isn't being treated like a lump!" We said we wanted OT and PT to continue coming for therapies, to which the one doc said, "Usually there needs to be a goal for therapists to treat. I don't know if the insurance company will pay for those therapies if he's going to die and there is no 'goal'". I said, "Our insurance hasn't had any problem paying the $1+million that has accrued thus far...the goals of OT and PT are stimulation, that shouldn't be a problem." The ironic part of the meeting, to me, was that the doc that I didn't expect to come was the one that spoke the most and drilled it home again and again the tragedy of the situation. Apparently that person doesn't realize we realize what we realize...the annoying part is that doc keeps saying, "The sad part is we aren't good enough for Noah." Yes, that is the sad part and that is the reality, but I told them that we still have hope and we still have faith, unfortunately we are stuck at the hospital while we wait..."Posted by Picasa

Em and I walked around, she with a box on her head, looking at the gingerbread creations that donors gave for silent auction to raise funds for the hospital.
This gingerbread house is on our kitchen counter but the rest are at the hospital for auction. For those locals, yes, that is Pearl St. Mall up in Boulder and those are the Flatirons in the background. The reason I had to

post these pictures is Emily said the sweetest thing the other day in the car and I had to share it with the world...We were driving home from running some errands and Em, out of the blue, said, "I love chocolate!" I said, "I wonder if Jesus liked chocolate?" Then I said, "You know what? I bet Jesus has never had any chocolate because it's from South America and He lived in the Middle East." Jason said, "For that matter, I wonder if he's ever had coffee?" Em said, "I know! We can take Jesus some chocolate and coffee when we go to heaven." I said, "I know He'll enjoy it! Let's definitely do it!"

It's these moments that are the sweet in the midst of the bitter. Noah had his coffee this morning (he sniffs coffee grounds), maybe we'll try some chocolate tomorrow...

Sunday, December 17, 2006

Noah got down on the floor and played with Big Sis the other day. We've been making it a part of his regular routine. I have to tell you, I don't know why I hadn't thought of it before until I saw the little boy next door on a vent doing it. It's so great! I can hover over him on all fours and smooch the heck out of him! I LOVE it!

Shhhhhhh...Noah had a fortune cookie last night! I broke it in half and let him feel the rough texture at the break site, then put the smooth fold in his mouth. He sucked it a little with his tongue but I didn't want it to get too soggy and break in his mouth, so just the taste had to suffice. That, along with his coffee beans this morning, makes for a yummy combo.

Well, we're having another care conference tomorrow at 2pm to talk about some care options for Noah, possibly caffeine therapy and to discuss drugs like Mestinon and 4AP. We were told we should have one every couple of weeks while we are here, but since the docs that are specialists don't have any more tests to run, one of them didn't really seem to feel he needed to be there and wondered why we were having one again...I'll tell you what, we are grateful for the care support that Noah is receiving, ie the 3North team is great, but I must say that if I haven't made it crystal clear, our hope is not in any doctor on this earth, so whether they show at the meeting or not, it's of no concern to me. We trust the Great Physician. Hey, it just occurred to know how you have to wait for a ridiculous amount of time in the waiting room for your scheduled appointment with the doc? WELL, we're in the miracle waiting room...what we do in there is the other part of it...we can sit around and read magazines about "Who Cares", we can get impatient and annoyed that the doc "overbooked" himself, or we can wait patiently and know that He knows we are there and our appointment stands. No need to reschedule... Posted by Picasa

Friday, December 15, 2006

I know I've already posted this picture from long ago, but it's one of my favorites...I was so happy that Jason had a son. This is how I pictured it...THIS reality is not how I pictured it! I'm really wrestling. I'm mad, and for the first time in over 4 months now, I sat and asked God, "Why?!" I suppose I haven't asked why this whole time because what happened tonight, that is, obviously receiving no answer for my question, is what I expected the last 4 months, no answer, so why I asked "Why" really was and wasn't rhetorical...I know we may never have an answer to the "why" until we are in God's presence some day, but the wondering here on earth is the hardest journey I've yet traveled, it's nowhere I ever wanted to go, and it isn't a destination I care to ever revisit. I have to admit, I hate this...I know life on earth isn't promised to be perfect and I know people have it way worse than we do, but this, this totally stinks! Posted by Picasa

Thursday, December 14, 2006

Merry Christmas from the Avalanche! Left to Right: Tyler Arnason, Ken Klee, Karlis Skrastins, Ian LaPerriere, and Noah...
A group of the guys were here today wishing the kids well, taking pictures and giving them cute little Av bears with skates on. So fun for kids that are fans. I told them Noah was a fan, of course, but he just didn't realize it yet...Thanks for taking time to visit kids at Children's. It means so much to them and their families and encourages their hearts so much. It was great to meet you! We pray that this Christmas would be a blessed time for you and your friends and families, that God's love would surround you and that His angels wouldn't have to work so hard protecting your noses from plexiglass! Posted by Picasa

Wednesday, December 13, 2006

I just typed a huge post and lost it, so here's the pathetic short version because I have to go home and go to bed...

I had a mini nervous breakdown today. I was frustrated about everything and literally screamed at the top of my lungs at no one in particular but the poor nurse had to hear it! She prayed for me, which was very encouraging. A lot of the frustration came from having to make decisions about his g-tube feeds and fielding the docs and nurses hesitations about using it. Noah puked 2 months ago and aspirated a little. He's been on an NJ tube ever since. We don't like that his stomach has been out of the picture and that his little colon just kept packing full of continuous feeds. Well, he's been on a micro drip of formula into his g-tube now for 5 hours and is tolerating it quite well...

So, after my breakdown, I left to run errands and got a very, VERY SAD call from one of the girls I used to nanny. Their dad, my friend's husband, died today of a sudden heart attack. My contacts are literally stuck to my eyes from bawling all day! My heart is so sad for our friends! We just had the blessing of enjoying a meal and visit with them the day before Thanksgiving. They came up and saw Noah, too. Noah's respirations were actually above the vent while Eli held his little hand...That's his name, Eli, and he was a great guy! He always made me and Jason feel like one of his own kids. He was a loving husband and dad and leaves behind an amazing woman of God, 5 terrific kids, one grandson and a new babe to come...PLEASE, PLEASE pray for our friends. This woman whom I have referred to many times in my blog and who I consider one of my mentors in life, she and her family have experienced more hardship than necessary in a lifetime. I told her recently that God has His hand mightily on that family's lives because satan has worked overtime to try to discourage and distract them...I pray, God, for your peace, strength, comfort and hope for our friends! Today, while I prayed for the fam, I was reminded of how much Eli loved to sing, and I had a sweet picture of him in a tuxedo, singing glory to God for eternity...why does death have such a nasty sting for everyone left behind?!

Monday, December 11, 2006

Here's one cool dude...
Noah is having light therapy with these styling shades. There are light sensors inside the lenses that send pulses and stimulate his eyes and brain. Today he had acupuncture and opened his eyes, moved his head to one side and shrugged his shoulder! He is currently enjoying the sounds of Mozart...we still need to get the sound frequency therapy to stimulate the connection between his ears and his brain, but in the meantime, the classics will definitely do. I brought over the whole collection.

Noah has been producing great urine output and has stooled on his own for the last 3 days, while off the continuous feed of formula. He will begin baby steps of food again on Wednesday morning. We are going to treat him like a baby bird that has to have small amounts, because we are going to use his g-tube again...we will introduce very small boluses of food into his "Mickey button" and slowly increase it over time. We want to use his belly again because we want to slowly reconnect the digestive system, including placing "tastes" on his tongue to stimulate the brain/mouth connection.

Anyway, I have to go home and go to bed. Jason's here tonight. I have to take advantage of this time to snuggle and sleep with Emily because she NEVER used to snuggle before all this happened. Now, she likes to "nuggle" every night! It's SO great! Good night to you all and may God's PEACE be in your hearts and minds, may His grace be abundant in your life, and may our lives reflect it to everyone we meet...

Sunday, December 10, 2006





Today Noah turned a 1/2! Woo Hoo! He had major snuggle time with his daddy, who took the pic of him with his new reindeer hat direct from loved ones in Kansas. Then, tonight I couldn't find his pacifier which he hasn't used in a while, so I got a bottle nipple and popped that in. It's pretty cute just sitting in there. Once in a while he'll suck and it shoots out of his mouth.

So, tonight I was scratching the left side of Noah's head with my nails and he turned his head toward my hand and half smiled! It was SO AWESOME! He hasn't done anything like that in a long time. Now time is all running together, but I know it's been a while, like months...

His weekend went well. His x-rays and CT scans were all clear, though the x-ray today showed that his large intestine still has some "stretched" parts from his major explosion the other day. Mine would be big, too! He's on a lot of antibiotics and an antimicrobial, plus flushes and the IV food, so his blood pressure's been creeping up slowly processing all the fluids. I've asked the docs and nurses to please be sure that the ratios are all good because he's got puffy hands and feet. They did some math and did a few minor adjustments, so hopefully his bp will go back down.

Two praises from the 3rd floor...the girl I've asked you to pray for that had to have a liver transplant and then rejected that one and was waiting for her second transplant, well she got it and is back up here for recovery! Please pray that her body does not reject this second one, actually her third!!! ALSO, Noah's neighbor has been here a month longer than Noah and gets to go home on Tuesday! He's a handsome little guy, also on a ventilator/c-pap, that melts your heart! Please pray for their transition.

Last thought...while taking out Christmas decorations, I found that one of our stocking hangers had broken. It was a neat silver frame and then we also have the letters, J O Y. Well, it was bothering me because at least with the frame and JOY, we were all covered, but since the frame broke, it was only three hangers and it just bugged me!!!! Well, my friend came over yesterday and told me they had hung their stockings that morning and put a hanger up for the whole family including one for Jesus. They write down areas of their lives that they put in the stocking as a gift or offering to Him. I thought that was about the coolest idea, so this morning, Em and I went in pursuit of the stocking hangers that spell P E A C E, the meaning of Noah's name, which in Hebrew is shalom, nothing missing, nothing broken. Of course, I couldn't find it at the two shops we went to. Emily did pick out a cool stocking for Jesus, but no hangers. We got home and my mom asked me what I wanted for Christmas because she had drawn my name. I told her I wanted a milagro. I have her name, she had the same request...Anyway, she and my dad went shopping for a few things and my mom gave me my gift early...P E A C E. It's hanging above the fireplace and will soon have Noah's stocking hanging from the first E. His stocking is here in the hospital, but it belongs at home with the others, just like him! It'll happen! Of that I have no doubt!

Saturday, December 09, 2006

Here's Noah with his "Edge" hat on, jamming to a little praise and worship, trying to get the acoustics down, because, seriously, his generation is going to need a band like u2 also!

Noah had quite a day...he had another CT scan and x-ray this morning, all of which came back showing NO abscesses! Everything was normal, except the grandiose amount of gas in his guts. Since we took the NJ-tube out for the pictures, we've been giving his little gut a break, and will do so through the weekend, so he's on PPN which are nutrients via the IV line. So, though it's quite bad manners, Noah is eating with his hand because that's where his new IV site is. Since Noah's blowout yesterday, he was a bit dehydrated and had a few boluses of fluids. Last night the nurses had to do blood draws repeatedly to check all his levels, which are all looking good, but as a result he went from a 33 hematocrit to a 23. The docs said surely it wasn't because of the blood draws, and then ordered a bunch more tests, so the nurses had to draw yeah, he had his 4th blood transfusion today while his daddy held him. For those who don't know, when they draw blood they usually "waste" 3ml each draw, so, it adds up. Go A+! Back to the boluses of fluids, well with 4 different antibiotics and flushes after each, Noah's blood pressure was high and he had big fat juicy feet, so, he had a good dose of lasix, basically a diuretic or water pill, and filled his urine bag with 300ml of fluid. He was retaining just a tad bit of water...He's stable, no temp, heart rate great, blood pressure back to beautiful, his skin looks fantastic and he's been opening his eyes more and giving us facial expressions more and more. We are going to do some light therapy and sound frequency therapy hopefully this next week. He continues the acupuncture which is great!

That's all I got for today...except I learned how to "loom knit" tonight and made Noah a hat, but it's too small so I'm taking it to the NICU for one of the tiny babies. A dear new friend, the one who just went to Africa, came and introduced me to the "Knifty Knitter". Now, I know I may be offending some official knitters out there, but I've really, really tried with the needles and to no avail, so for now, this works for me and it's so fast! I'm not claiming to knit, I am claiming that I now can "loom", so that's pretty cool! We also went to my sister and her fiance's Christmas party. Emily was the shortest adult there. She word pink and lots and lots of her dress up pearl jewelry, along with her fancy sheer tutu over her pink skirt for extra bling. Man, I love my kids!