Saturday, January 29, 2011

Diapering into Dollars

Someone asked my to explain how the Pampers Gifts To Grow and the Huggies Enjoy the Ride Rewards programs work, so here goes!

Both programs basically work the same: In marked packages, you will find the codes on the inside that you enter online (although Pampers now has the ability to text the code now). The amount of points you receive depend upon the size of the packages, the kind of diapers, etc. These codes on the packages are single use only codes, meaning you can only enter it one time. Click here to see the points matrix for Pampers to see the value of their different products.

Both programs have "extra" ways to earn points as well. Huggies gives you points for watching videos, participating in polls, viewing some webpages, etc. This month, Pampers is allowing you to earn an additional 10 points when you enter one code before Jan. 31 (Monday) as well as double points for Swaddlers or cruisers until 2/12/11. Pampers also offers bonus codes that you are able to use in multiple accounts (I have an account for myself and one for my husband) Here are a list of codes, courtesy of Grocery Shop For Free. (I've used many in my account so I cannot confirm or deny whether they are currently still active, but it doesn't hurt to try!) Simple copy & paste it in the "enter 15 digit code here" box

VMF776C7HMXXT4A – 42 Points

4WJDHKU4RPP6PT2 – Good for 10 points

F9779FYAHFJRYCN - Good for 10 points

GTGWELCOME10PTS – Good for 10 points

NEWWIPESPACKAGE – Good for 10 points

Thanks2Veterans – Good for 10 Points

10PTSFREECODE4U – Good for 10 Points

FacebookOct2010 – Good for 10 Points

JOINNOW4REWARDS – Good for 50 Points


WELCOME2GTG2010 - 10 points

PUNTOSPARAMI123 - 10 points

2BEGINEARNING50 - 50 points


NOVFACEBOOK2010 - 10 points

FBHALLOWEEN2010 – 10 points


Pampersgtg10pts – 10 points

FacebookOct2010 – 10 points


PUNTOSPARAMI123 – 10 points



2BEGINEARNING50 – 50 points

GETSTARTEDNOW10 – 10 points


GTGFIVEMONTHS10 – 10 points



Rewards for Pampers include Shutterfly items, coupons and gift codes to places like (You can earn 30% back in cash off of your purchases in the 1st 3 months, plus save 15% off your first purchase, use savings code CXXK8454 or click on the banner on the bottom of the page), toys, books, puzzles, magazine subscriptions, gift cards to places like Red Robin, Sam's Club (these can be used at Wal-Mart as well, so you don't have to be a member to use this!), etc. Rewards for Huggies include toys, potties, sippy cups, gift certificates to the GAP, and they have sweepstakes and instant win games as well.

Now before you say, well I don't buy the "brand name" diapers because they cost more, let me tell you that you actually CAN buy Pampers & Huggies for the same prices as store brands, if not less! The Thrify Couple helps you find the BEST diaper deals weekly, so that you can get brand named diapers for really good prices! You've gotta change diapers whether you like it or not, so you might as well get rewarded, right?

New kind of Normal

Several Years back, my church, Englewood Baptist held a women's banquet and the speaker for the evening was a woman named Carol Kent, author of many books including A New Kind of Normal and When I Lay My Isaac Down. She told her story of how her son was arrested, charged and convicted of 1st degree murder and is serving a life sentence in a florida state prison. In Florida, a "life sentence" is just that: the rest of your natural life on this earth, meaning he will never be paroled. All of their appeals have been exhausted and denied. She spoke about when the floor falls out beneath you, you never go back to normal. You're world is forever changed, and no longer the same. She told us that this time is horrible, but that eventually you start picking up a piece here and piece there. You start to create and adjust to the "new" normal, if there is one after a catastrophic event, whether that be a death of a spouse, unexpected divorce, illness, etc. Each "tragedy" would look different for each person. She was such a good speaker, and I bought her book that night and she even signed it. I read the book and thought it was so sad and couldn't imagine the thought of going through something so horrible.

Now, I know that my situation with Jordan is not a tragedy by any means. Nothing catastrophic has happened. Yes, he's been awfully sick. But he is a strong kid, and is thriving, despite his many health issues. But I do have to admit, I've found myself in a new kind of normal. I now monitor his vitals 2x a day and record them. I administer his multiple medications throughout the day and record them as well. I find myself spending hours at the doctor throughout the week. I am one first name basis with the staff at our pedi's office. I'm learning more and more medical jargon daily. Heck, I'm practically a nurse now.

I suppose it could be much worse. I could be getting into a new normal of watching my child go through chemo, like too many of my friends are. Or I could be suffering at the loss of a child. But the thing I've learned through all of this so far is that just because my expierence is not "as bad" as this person or that person, it doesn't make my pain any less. The ache in the heart of a mama of a child with chronic illness is just as real. The sadness of seeing your child in pain is universal, no matter what is causing that pain. The helplessness and the complete loss of total control is identical.

But like Carol said, over time, we'll begin to see a piece on the ground, grab it, pick it up and place it back up in our lives. We'll continue to create our new normal each day. The good news is that our new normal may eventually turn out to be way better than the old normal. We get to appreciate the little things in life. We celebrate small victories in our kids' lives, like "no fevers", finding a completely soaked diaper after a day of no wet ones, and eating a whole container of yogurt. We see the things we used to get upset over as petty. And if nothing else we will have new friends and deeper friendships forged in the bottom of the pit, where we didn't evev know that there were pieces to pick up, or that a new normal even existed.

Friday, January 28, 2011

Eye contact

Eye contact is something that is cultural, and in the South people generally look at strangers in the eye, smile, and say "hi" or nod. Simply acknowledging their existence. I grew up in NY, and don't remember doing that. If it was someone you knew, of course you said hi and smiled. But strangers? No way!

I suppose I've become a "Southerner" now, as I've come to accept and practice this cultural norm, and on the rare occasion that some one does not reciprocate, it makes me think "wow, they're rude!" or "what's wrong with them?!?"

I felt this way the first time we stayed at the Ronald Mcdonald house when Jordan was going to have his MRI and appointment with Infectious Disease/Immunology. When we got there, I figured we'd all be in the "same boat" so to speak: we were all there because our child was sick. We had an unspoken bond even before we met. The staff at the RMH are great, smiled a lot and were very friendly. Some of the people in the house were friendly, but I just didn't understand why people wouldn't look at me in the hallway when we passed. We had our day at UNC, and fortunately we were able to leave with good news!

We went back to the RMH on Wednesday in preparation for another early AM with his Infectious Disease doctor as well as a consult with a peds surgeon in regards to an inguinal hernia. Again, staff and volunteers were all smiles, very kind, etc. But the residents seemed to just pass by me, without looking up, with a few exceptions. I simply did not understand it!

We went to our appointments yesterday morning. Peds surgeon decided it would be best to wait for an official diagnosis before they did surgery, as they wouldn't want to make things worse for him, or if his condition required surgery, then perhaps they could combine the two. Then we were off to ID dr. Labs came back showing all the tests except for two were completely normal. The two levels that were off were not off "enough" for the doctor to even be concerned about. He did want to xray his sinuses to see if there was a sinus infection, and sure enough, there was! He's hopeful that this is what has been causing his fevers and that treatment for 6 weeks with an antibiotic will be what he needs. But he said as far as his other problems, they were not tied to a weakened immune system or anything else, so we'd have to go see a GI doctor for his chronic diarrhea.

I walked out defeated. I tried to hold back my tears of frustration, after all I was out in public. Plus I still had to drive back to the RMH and check out. On the way home, I would let myself cry, but until then, I just needed to suck it up.

I got to the RMH and went back to my room, looked at the clock and it was 1:30. I still hadn't eaten anything but a poptart at 7AM. I'm sure JoJo was hungry too, so I figured we'd go ahead and eat at the house first. I went to lay my laptop bag on the bed, and then the flood gates opened. I fell to the ground sobbing uncontrollably. It was not a diagnosis I had gotten, it was the fact that there was NO diagnosis, no broader explanation to why my baby has all of these issues. I began to wonder if I was just crazy, maybe there isn't anything wrong with him at all. Then I wept more at the totally helpless I felt.

Then all the sudden my tears stopped and I got mad. Mad that God created Jordan this way and was not letting us do anything about it. (I'm just being honest here, I'm sorry if I offend anyone). I got really angry that he would let this crap go on for so long without a reason. So many doctors, and the only thing I have to show for it is MORE medicine and referrals for MORE doctors. How much longer can I do this? The constant doctors visits, the agony of not knowing, etc. It is so incredibly draining both physically and emotionally. And then I started crying yet again because I was thinking about myself instead of my little JoJo.

After I finally had calmed myself down & stopped crying, I went and washed my face. It was well after 2, so I thought maybe getting something to eat would help me calm down. As we made our way from our room to the kitchen, I finally understood why I hadn't gotten eye contact. I kept my head down, stared at the floor. I didn't want to see a smiling face or to even say hi to someone else because I knew that if I did, I would probably fall apart again & start sobbing uncontrollably. And I hadn't even had a clear diagnosis. How much worse do these parents feel that already have a diagnosis?

I just want answers, and I do not understand why we don't have them. I don't get why God has us going down this path. I have to hold on to the idea that something good would come of all of this, but right now, it sucks.Even writing this, I'm wiping away the tears. It hurts beyond words. I want to be able to stop looking at the ground and be able to smile and nod at people without falling to pieces and sobbing.

Saturday, January 22, 2011

Encouragement for life...

My friend Lorin tells me I've been really depressing lately, and I suppose she's right. My heart is heavy and burdened, and it's hard to turn it off. But the other day I was listening to the Christian radio station and I heard the tag line "Encouragement for Life". I can't even tell you what radio show that comes from, but I think it's either Focus on the Family or Family Life Today. We all need encouragement for life, because life is just that: life!

Life is messy. And it's hard. And sometimes it gets better, just to take a turn for the worse again. Life is a battle, mixed with times of pure joy and happiness. But then I'm reminded of a scripture that was given to me during the first really traumatic experience as an adult: I had a miscarriage at age 19. It was rough, even though the pregnancy was unplanned and I was not married. But someone gave me this verse below and it changed me!

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ." 2 Corinthians 1:3-5

I was able eventually to move past the whole in my heart, and eventually would experience it 2 more times. But guess what?!? The comfort I received during those times of miscarriage, helped me to in turn comfort others who were faced with something no mother expects to deal with when she see's the "positive" pregnancy test!

Here's an e-mail from a dear friend of mine:

"I'm watching the view and Lisa Ling is on talking about her recent miscarriage and how it effects women. I thought to myself-I wonder why I handled mine so well. I never felt alone, I never felt like no one understood, etc and I think that was b/c you spoke so openly with me about it. If you think about it-that's where/how our friendship blossomed, over miscarriage and pregnancy.

So, thank you for being so open with your own experiences b/c I do believe it was a huge factor in getting over an unfortunate (but all to common) thing."

I'm so glad that due to a horrible tragedy, I ended up knowing one of my best friends. I hate that we both had to go through it, but now I have an incredibly dear friend! So what are you going through right now? Look around, and find someone who's been through it before. Let them comfort you, so that in turn, in the years to come you can be the one comforting.

Already been through the storm and made it to the sunshine on the other side? Seek out someone who is caught in the rainstorm and offer an umbrella, or maybe even invite them inside your house where it's not raining!

Thursday, January 20, 2011

Kindred Spirits: Part 3 (Hailey)

Hailey is getting ready to celebrate her very 1st birthday this month! Her family and friends will be celebrating on the 29th of this month. This party will not only be celebrating her birthday, but thanking God for the strength that Hailey has shown throughout her "story". Hailey is fighting neuroblastoma and is quite possibly the cutest little girl on the fact of the planet, next to my own daughter, of course! Hailey is the daughter of a good friend of mine, Amy and her husband , Bob, and is the youngest of 3 kids.

It all started in October of 2010. Hailey just changed. That is the best way to describe it. She was no longer the happy, sweet, easy going little baby that her mom, Amy, knew. She was tired more, very irritable, and seemed to be in pain. Amy took Hailey to the pediatrician and explained that she felt like something was wrong. It got dismissed as teething!!

For the next week and a half things just got worse. She refused to crawl or try to stand up like she had been doing a few weeks earlier. She also started to sit leaning to one side. She would pull her leg up in pain, she was not peeing as much and she was very constipated. Then one afternoon Amy noticed some swelling in Hailey's groin area while changing her diaper. It really scared her so the next day she went back to her peds doctor and Amy told the doctor that they were NOT leaving until they found out what was wrong. She first thought it may have been an infection in the hip joint so she ordered x-rays and some lab work which showed nothing wrong. Thank God that through a course of events that day Hailey was sent to Pitt for more workup. That was on November 3rd.

The attending doctor at Pitt attentively listened to Amy as she explained everything that she had noticed in Hailey. He also saw the swelling himself which had actually started to discipate. He told her that "moms are always right" whenever they think something is wrong. Amy felt reassured that they would not be leaving Pitt without a diagnosis. Hailey had lots of labs done and none of them showed anything out of the ordinary. There were no signs of any infection. The doctor then ruled out the hip as the cause of her symptoms and thought it could be a hernia so he scheduled an ultrasound of the groin area. The radiology doctor saw no hernia, but did mention that her bladder was really distended.

So again with no answers the doctor ordered an MRI of the groin area. Amy noticed it was taking a lot longer then they had originally told them and then the pediatric sedation doctor said they had to scan further up into the abdomen and chest area. After the doctor walked off, Amy says it was then that it HIT her...why would the do that unless they found something?!? Amy tracked her down and she said they found a mass. After that things were a blurr.

Her doctor came down and said he was having the oncologist meet with Bob & Amy as soon as Hailey got back to her room. When they met with the oncologist he told them that just by looking at her scans that he knew for certain that it was malignant. That was November 5th, just 1 day shy of Hailey turning 9 months old.

I remember being up there with Amy on the day Hailey had her biopsy with another friend of ours Renee. The whole way up, Renee & I just wondered what to say. I shared with her about how that could have been us, as we had just had JoJo's 1st EEG. And it was on that ride up to the hospital where I committed to doing whatever I could to help this precious family. When we got up there, we prayed, we cried, we even managed to make it down to the cafeteria for a bit. My heart broke for Amy and Bob, and in that moment I felt completely helpless. There are some things that will be forever etched into my heart of those few hours Amy, Renee & I spent together. The picture below is of me and that sweet girl during church the week that I got to spend with her so Amy could go to Bible Fellowship Group. I loved every second of it, and she LOVED the Little People nativity set (not to mention my fantastic song entitled "Hailey-bug", which is what Amy calls her!)

A few days later after the biopsy the doctors gave "it" a name. "It" was Neuroblastoma Stage IV (non-adrenal), and later would find out it was good biology....MYCN non-amplified, hyperdiploid, and favorable. LOH of 1p and 11q chromosomes were unable to be determined for unknown reasons. Praise God Hailey is only considered intermediate risk disease due to age.

Hailey is in the process of Chemotherapy, and has just finished her 4th round. The original plan was to do 4 rounds, then a scan to see more chemo would be needed or if they could do surgery to remove the tumor. Amy has been told by the doctors that most likely Hailey will have some of the tumor remain inside of her, and it will become benign over time. But this idea is tough for any parent to imagine, knowing they didn't remove all of it.

Amy says that it's hard for her to know that for the next few years she will have to go back and do MRI scans every 3-6 months to see if the tumor has grown and/or spread, and that it's just hard to just lay that at the feet of Jesus, which is totally understandable. Please remember to pray for Hailey, for her parents Amy & Bob, and for her older brothers Cameron & Carson! To follow Hailey's updates & to leave encouraging messages, you can visit her CaringBridge page.

Wednesday, January 19, 2011

Kindred Spirits: Part 2 (Brentley)

Brentley just celebrated his very 1st Birthday last week! He had 2 parties, ate cake, and opened presents just like any other 1 year old. The only difference is that Brentley is in the middle of fighting a rhabdomyosa​rcoma in his bladder. His parents are Lindsey & Brad, and we met through mutual friends while sharing prayer requests. We haven't "officially" met in person, but I'm hoping that we'll be able to meet next week while we're all at UNC.

Brentley's story began when his mommy noticed he was VERY constipated for like 2 weeks. Then she noticed that he was having problems urinating. She said he could do a few dribbles but couldn't make a "stream". Then he started passing tissue-it would be the size of her pinky fingernail. Their local hospital missed the tumor on two separate ER visits.

Brentley wound up at UNC children's ER on November 2, 2010. Within hours of arrival at UNC, Brentley was diagnosed with the rhabdomyosa​rcoma via a renal ultrasound. Chest ultrasound, bone scan and bone marrow biopsy all came back with encouraging reports that the cancer had not spread any where else. Even more encouraging is that a spot across from the tumor that was seen in two ultrasound scans "disappeared" by the time it came to biopsy it! Such amazing news!

Brentley is scheduled to have 42 weeks of chemotherapy, and was originally scheduled for radiation as well. But the doctors believe that the tumor is responding well to the chemo, and radiation may NOT be needed!! He has had some side effects of the chemo, as expected, so please continue to pray that these would ease up!

Brentley was able to be at home for his 1st Christmas, which is so very exciting, even though he had developed early pneumonia and was treated in the ER 3 days before Christmas ! It is those little things that sometimes we take for granted!

Lindsey asked that we join with them in praying that the Lord would help her to be a better witness throughout the entire situation. Please also pray for healing, for comfort and for strength for both Brad & Lindsey! To follow their story, you can visit Brentley's CaringBridge page.

Kindred spirits: Part 1 (Joey)

Joey is an 8 month old cutie, would you not agree?!? He is actually one of my best friend's nephew. His parents are Maura and Tom and he is the youngest of 3 boys. Joey has had many stays at Johns Hopkins Hospital in Maryland. Joey's story began on the day of his birth, May 5, 2010. He was born at 33 weeks gestation, and he had had IUGR- intrauterine growth restriction. Basically meaning he was small for his gestational age. Even though he spent 4 weeks in the NICU, Joey had no issues other than his growth. He stayed a month because it took him that long to go from a birth weight of 3lb, 8oz to the discharge weight of 4lb, 6oz.

He had a lot of issues with poor breathing and lack of growth. Everyone they went to see just gave him more inhailers and nebulizer treatments. It wasn't until the first Pulmonary appointment at Hopkins that the doctors attempted to come up with a more concrete answer. Joey got to ride in both a helicopter and an ambulance!
Joey was at Hopkins for three weeks the first time and they found that he has:
-Chronic Lung Disease
-Esophageal Strictures
-Aspiration Pneumonia
-Gastroesophageal Reflux
-Gastroesophageal Reflux Disease
The lung disease and pneumonia are due to the aspirtation which is caused by the esophageal strictures. We are hopeful that with time, he will grow out of this. If not, it could remain a chromic (but manageable) issue for the rest of his life. He got a G tube inserted on 12/23 to bypass the esophagus, hopefully lessening the likelihood for aspiration.
His Mommy says "Now we just wait and see..." Please continue to pray for Joey, his parents Maura & Tom, and his brothers.

Deal of the Day: amazon gift card!!

Today's deal of the day is from Living Social and it is $10 for a $20 Amazon gift card!!

What's rarer than spotting a snow leopard, Halley's Comet, and Mark Wahlberg with a shirt on? Answer: Today's once-in-a-lifetime deal. Pay just $10 and get a $20 gift card to use at, the largest online retailer. Whether you are looking for something usual, like a book, or unusual, like a Borat-style mankini, you'll find it among the millions of products listed on the site. Or, if you're hankering for something that really stands out, put your 50%-off gift card toward the revolutionary and bestselling Amazon Kindle device. Just be sure to act fast, because deals like this only happen once in a blue moon.

Fine Print:
Limit 1 per person, no gifting allowed • Gift Card does not expire • Voucher purchase is valid for US-based customers only • LivingSocial Terms and Conditions apply • The terms and conditions set forth below are deal specific terms that supersede any inconsistent terms in the LivingSocial terms and conditions. • Amazon Gift Card cannot be purchased with Deal Bucks.

If you need diapers, you can save 30% and get free 2 day shipping with Amazon Mom, then combine this with 20% coupons from ebay
along with a manufacturer's coupon (you may need to refresh a few times to see the $1.50 coupon for Pampers) and then use your $20, and you'll be able to get Pampers Baby Dry Diapers (100-200ct depending on size) for the price of the gift card above!! It's delivered to your door and trust me, you'll get addicted to having diapers at your door for cheap!!

Tuesday, January 18, 2011

crazy love....

Love is a choice. It's not one that you can make and then forget it about it. It is a daily choice, maybe even hourly. The one that snores. The one that is forgetful. The one that has to save boxes. The one that hasn't met a coupon that couldn't be used or traded. The one that washes new pink pants with a tub of white clothes. The one that refuses to touch feet in bed. The list could go on, but I won't bore you.

The good news? We still choose every day to live, to laugh, and to love...
"Above all, love each other deeply, because love covers over a multitude of sins" 1 Peter 4:8

Friday, January 14, 2011

Old McDonald

"Old Mcdonald housed a family whos little one was in the NICU. With a homemade meal here, a laundry facility there..."

Part of my "11 Goals for 2011" is to donate to a different charity every month. Since we just recently experienced the amazing Ronald Mcdonald House charity 1st hand, I decided I'd start with donating to them, and I'm asking you to join me! If you have a local Ronald McDonald House, feel free to donate there. If not, perhaps you could donate to the Chapel Hill Ronald McDonald House online.

The Chapel Hill RMH buys 17 gallons of milk, 4 gallons of orange juice, 3 dozen eggs, 2 lbs of lunch meat, 1 lb of sliced cheese, and 3 containers of laundry detergent (among many other things!) each week in order to provide for the needs of those families who are caring for their children in the hospital. The kitchen is always open, and they have food available at all times!

Practically speaking, they receive no public assistance and use donations to provide for the needs of the families. They charge a mere $10/night per family, when it costs about $60/night to operate. They have a Wish List of items they use every day that they are need of donations for.

I'm asking you to consider donating something off of their wishlist or just monetarily online. I will be going back January 27th and plan on stopping in to the Ronald McDonald house with donations. If you would like to give something off their wishlist, or want to give me money to go purchase these items, you can contact me at cookemonstersmom *dot*Com.

Hopefully you will never need to use the services of the Ronald McDonald House, but if you do, they will be there for you, like they are there every day for thousands of families throughtout the US.

Thursday, January 13, 2011

We left to go up to Chapel Hill on Tuesday night because with all the ice, we were worried we'd not be able to make it up there in time Wednesday morning. My mom, Jojo & I checked in to the Ronald McDonald House, which was such an incredible blessing. They have everything you could possibly need while staying there, including a homemade dinner, snacks, laundry facilities, etc. Every one was so friendly and we felt very welcomed and indeed, at home. We were so thankful for that!
JoJo even got pet a doggy & fell in love. We might just have to see if we can get him one, right honey?!?

We got up to the hospital around 9AM, and checked in for his first appointment with his Infectious Disease/Immunology doctor. We had to wait quite a while for him, but he took a brief history, checked our little guy out, and then ordered a slew of 29 tests for him. He told us to come back in 2 weeks, where he'll have the results of those tests back. I tried to figure out what he was testing for, but in a way, I'm glad I don't know.

We left there and it was almost time for us to head to MRI. With a quick stop at the fun clock, we were off to MRI. I was just ready for this part to be over. After filling out more paper work, and waiting with a grumpy toddler (who wanted his bottle but he couldn't have any because of the sedation & he wanted to go to sleep but we couldn't let him) they finally called us back. JoJo was ANGRY with them, to say the least. He wanted to sleep and to have his bottle, not to be hooked up to all sorts of machines. Finally after all the questions, the vitals, the monitoring began, it was finally time for them to give him the "knock out stuff". He was again NOT happy about that either. But in about 15 minutes he was sedated, and then I had to kiss my baby, and leave him. I did good: I didn't cry, I just gently laid him down on the bed, kissed his forehead and told him I loved him. I made it to the waiting room where my mom was, and still didn't shed a tear!! I had my "super mommy" cape on. I had to go all the way out near the front of the hospital to get service so I could update Kenney that he was in the MRI. I also listened to my voicemails, and I was just overwhelmed by the outpouring of love and support. There were messages from friends, family members (thank you to my cousin James for calling, I'm sorry we never got back up with you, it was a crazy day!), Pastors, etc. And then I did a quick update on FB. I had to run back to the MRI place b/c I was worried they would need me for something & I wouldn't be there.
About 45 minutes later, they came to get me. I went back to see him in the recovery room, and he looked so pitiful. But alas, my "super mommy" cape reminded me to not freak out. It took him quite a while to wake back up, and finally after he did, he was unhooked from all of his machines, and we were free to go. He was still REALLY out of it, so we figured we'd go ahead and get his tests done while we waited for the neurologist appt.

It was good that he was really sedated still because they had 12 tubes of blood to draw! 29 tests later, we were finished, and we looked at the clock. It was 2, and we had 1/2 hr before his neurologist appointment and the results from the MRI. I clearly couldn't eat, plus there wasn't much time so we just decided to head on over and wait. JoJo was passed out the whole time. We finally got called around 2:40 and we were 1/2 way down the hall, when someone from behind us said "Is that the Rue family?" we turned around, and the nurse nodded and the lady said "We're waiting on them for a bit"

My heart stopped. I almost puked. I thought for sure that meant they had found something and they were just having to re-read the scan or essemble some sort of "plan of attack". The lady said "Carolyn Zook has 2 patients back there already & I'd hate for you to be stuck back there all that time." phew. Super Mommy cape back on. We went back to the waiting room, and finally were called back to the room.

I knew the minute she walked in the door that things were ok. Her tone of voice was different than the phone call when she told us that they were needing to schedule the MRI. And then she said it... "He has a completely healthy fully formed brain!" I wanted to jump up and down, do a cart wheel or something. But seeing as how my heavily sedated 14 month old was passed out in my ams, I didn't. She showed us the pictures of his scan, how everything was perfect. We then talked about medication for his seizures, and then we were out of there.

So now we're in limbo, a place that is not fun at all. We wait for two weeks to get the tests results of the 29 tests his ID/Immunology doctor ordered. I'm so thankful for this little boy, who lights up my world. Even when he's fussy, when he doesn't sleep at night he the piece of my puzzle that I didn't even know we were missing. I can't imagine life without him, and I hope I never will have to live it without him.


I thought I'd finally be able to sleep last night. But that was not the case. I had dreams of calls from the doctor, saying someone had re-read the scans and found something, or dreams that we went back in a few weeks and got horrible news. I tossed and turned all night.

How can the fact that my son doesn't have a brain tumor not be enough relief for me?! How can the fact that his brain was formed perfectly not bring me some peace?

Perhaps it's because I know he's still got "something" going on inside of his body, and we don't know what it is. Maybe it's because I know that at any given moment, my good news might quickly turn into bad news. Maybe it's because as I was leaving that hospital, I thought of my friends who are fighting with their kids against illnesses. I thought of Joey at Johns Hopkins. I thought of Hailey and Brentley who are infants both fighting cancer.

While my world came to a hault while my son was having a perhaps life-altering MRI, the rest of the world continued on. People went to work. They stopped by the grocery store & the post office. People celebrated anniversaries, birthdays, engagements, honeymoons, etc. Duke's winning streak came to an end. My mom said it best yesterday: When you're at the hospital, it's like the rest of the world doesn't exist and vice versa. It just doesn't sit well with me.

These families' lives come to a pause. They are stuck in little rooms while they watch their kids be treated. They have no control over anything. And that just sucks. I hate it. I hate it for them. I hate it for their kids. I hate it for their other kids that are having to deal with it to. Because disease is not just a one person battle, especially when it's a child that is sick.

My heart is burdened beyond measure, not only for my child, but for these precious friends of mine as well.

Tuesday, January 11, 2011

Faith like a child...

My friend Amy is in a battle that no parent should have to face: her ten month old daughter was diagnosed with a neuroblastoma on her spinal column. I'll never forget the day we spent with her at the hospital while Hailey had her biopsy. We hugged her, we prayed with her, and we surely cried with her. I have the gift of mercy, and it was easy for me to put myself in her shoes, especially with the issues JoJo is going through.

We were talking on the phone the other day because I was trying to mentally prepare for what we might be told tomorrow. Amy & Bob were completely blindsided with the diagnosis. At least I know what the possibilities are. And I wanted to be prepared. So we talked about how scary the unknown is, and how horrible the agonizing wait is while you wait to hear from the doctors. She talked about how when Hailey was going through her 2nd round of chemo, she was waiting, as happy as can be. She looked up at Amy with a HUGE grin on her face. She knew that she was with her mom, and that she could trust her mom. She told me she wished she could be like that with God. To look up at God and trust Him completely, with a HUGE smile on her face.

To have faith like a child. A child doesn't look at the circumstances, he looks for what he knows to be true. For example, we learned during the Truth Project, that a child walks to the end of the diving board. Everything in his mind tells him NOT to jump into the water that is much deeper than he is tall, that he won't be able to breath under the water, that he will no longer be in control once he makes that move to step off the board. But then he sees his mom at the end of the board, waiting with her arms open, ready to catch him. To rescue him if the water overcomes him. He knows this because he knows that his mom won't let him be hurt under her watch.

So I know the word of God promises me many things.
-"All of my days were written in your book before one of them came to be." Ps. 139:16
-"The Lord your God will be with you, wherever you shall go" Joshua 1:9
-"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

Here's the scripture my dad shared with us:
Psalm 91

"He who dwells in the shelter of the Most Highwill rest in the shadow of the Almighty. I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.” Surely he will save you from the fowler’s snare and from the deadly pestilence. He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday. A thousand may fall at your side, ten thousand at your right hand, but it will not come near you. You will only observe with your eyes and see the punishment of the wicked. If you make the Most High your dwelling—even the Lord, who is my refuge— then no harm will befall you, no disaster will come near your tent. For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone. You will tread upon the lion and the cobra; you will trample the great lion and the serpent. “Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation.”

So my goal for the day: To go to the end of the diving board, and despite the water being much deeper that I am tall, to look to my Daddy, and jump in, trusting He will be there to rescue me!

Monday, January 10, 2011

JoJo's woes...

Photo courtesy Rachel at Savor Photography
It's crazy to believe that in his 13 months on this earth, our little guys has been as sick as he has. Even his pediatrician says that he is the sickest full-term baby she's ever had. I was wondering really how much he had been through, and then I read the letter that our pedi had written to the Infectious Disease/Immunology specialist at UNC. And it hit me like a ton of bricks: This kid has been really sick. Here's a brief history of Jordan's medical history:

It first started right after we took him home from the hospital. He developed physiological jaundice at day 3 of his life, and required photo-therapy with a bili-blanket. We went every day to the doctor for the 1st 2 weeks of his life. His pedi is a good friend of mine and knew that it was important for us all to be at home with each other, and allowed us to use the bili-blanket at home. (She said if it was any one other than us, she would've admitted him to the hospital, but she knew she could trust us to follow the strict schedule of photo-therapy. Eventually it turned into breastmilk jaundice and finally it went away. We called him our little glo-worm.

He was admitted to the hospital for bronchitis and respiratory distress three times this past year. The 1st time was at 3 months of age. Then he decided to give us an anniversary present we'll always remember and then 3 weeks later was readmitted, this time with RSV. He has been diagnosed with Asthma and sees a pulmanologist at UNC to help manage this.

In between his hospitalizations, he was also having recurrent double ear infections and eventually had tubes placed at 5 months. So far he has not had any ear infections since, so we're very thankful for that.

Shortly after 8 months, he stopped nursing, so we switched him to formula. We began with Enfamil, but he had projectile vomiting and diarrhea so we decided to switch to soy, since that is what Braydon had used. He was fine with this, but then he started again with the diarrhea. So we tried AR, Nutramagen, etc. Nothing worked without causing vomiting and chronic diarrhea. We were referred to an allergist to have food allergy testing done, which showed no food allergies. He suggested that perhaps JoJo had a protein sensitivity, so he decided to try him on Alimentum. Just as with the other formulas, he was fine for about 7 days, and the diarrhea returned. We still deal with chronic diarrhea today.

The allergist also decided to start some immune system testing to see if his immune systems levels were okay, since he had been so sick. The levels all fell within normal, but there was an abnormal result in regards to his responses to his vaccinations, which might indicate his immune system is not functioning the way it should. He suggested we go to the immunologist at UNC.

He also suffers from what is called as "fevers of unknown origin" where he'll have high fevers with absolutely no explanation. His ears look fine, throat is fine, strep culture negative, urine & blood work look normal. But yet he still has a fever. It was because of this and the allergist's recommendation, our pedi referred us to UNC AIRID department (which stands for allergy, immunology, rheumatology, and infectious disease). We have this appointment prior to the MRI this Wednesday.

Then one day, I was just finishing up feeding him lunch when probably the scariest thing I've ever dealt with happened: JoJo got stiff as a board and he started shaking. I was not expecting it at all, and it wasn't very long at all, maybe a minute, tops. But we took him to the ER, and he was still very subdued and just laid in my lap. He had no fever and no other symptoms. After a few hours of observation they sent him home. We followed up with our pedi, who again referred us up to UNC pediatric neurologist. They saw him and did an EEG, just to make sure everything was okay. From that 1st EEG, they showed nothing irregular, but she did mention they did not get to see him sleeping, which they would have liked to. But we set up a follow up appointment and left the clinic with a "wait and see" point of view.

Then the weekend before his birthday, he had 2 subsequent seizures. When we called his neurologist, she suggested we come back to her again. At that appointment, she ordered a 3 day amblatory EEG. He was fitted for the backpack & all the wires at the next appointment and for 3 days, we had to be really careful about how he slept, because of the wires. I was so worried he would choke himself.

After the test, we didn't hear anything back right away, which I was thankful for. (A dear friend of mine who works in the medical field told me that most of the time, if there is something grossly irregular, I'd hear from them right away.) I remember when the neurologist called me back, as I just happened to be in our regular pedi's office (again!) for another fever that couldn't be explained. I knew right away that she had found something because he tone was different than it was when she called me to tell me the results from the 1st EEG. Then she told me they had seen abnormal spikes in the right frontal lobe of his brain when he slept and that they would need to do the MRI. But since he has respiratory issues, he we need to be sedated.
Photo courtesy Rachel at Savor Photography

Hopefully this will all be nothing, and we'll look back and saw how silly we were for worrying about it. But if the path that God has for our family, and for my precious little man, take us else where, we trust that He, like always, knows better than we do. Thank you for your prayers for healing, for wisdom & discernment for JoJo's doctors!