Wednesday, August 24, 2011

Hurricane Prep for Kids

While we prepare for the arrival of Hurricane Irene here in NC, we're focused on preparing our homes, making sure we have enough supplies, etc. We watch the forecasts, check the updated hurricane prediction models, etc. Here's a little information on creating a Family Disaster Plan. (And make sure you've got enough medication, diapers, formula, etc in addition to your "regular" supplies!) But aside from this, how can you help prepare your little ones without getting them upset or overly anxious?
My oldest son Braydon is very much a worrier. He hates the thought of bad storms coming and the last time we had a severe weather problem here, places all around us got hit by a few tornadoes. We had to prepare ourselves though to "shelter in place". All of this left Braydon extra nervous, especially with our recent "jolt" with yesterday's "earthquake".

So this got me to thinking about preparing our kids "Disaster Distraction" bag: Items that would make them feel secure, that would distract them, that would allow them to feel that, God-forbid if things were to be catastrophic, they would have a piece of normal with them. Something also to keep them from driving us crazy with "I'm boooorrreeed" should we lose power. I made a list & wanted to share it with you to help you prepare your own.

I was able to assemble three of these (One for boy age 7, girl age 3, boy age 22 months) with things right in my own house in a relatively short time. I'm fairly confident that you'd probably be able to do the same as well. There's no "right" way or wrong way to make one-what works for one family may not work for another. Your kids could not like to color, maybe they prefer to write a story or make a collage. For example, I know for sure that I'm including scraps of fabric in my youngest son's bag because he loves to try to make "hats" out of them. But your kids would probably say "Mom, why did you put scrap fabric in my bag?!?" You know your kids better than anyone else so use what works best for you.

-Small flash light with batteries-keep it simple, no need for an expensive "Character" one. (see below) *Frugal Tip* I buy Halloween flashlights on clearance after Halloween is over. I know that's still several months away & won't help you now, but maybe it will help you for next year!

-A Sheet of stickers to "decorate" their flashlight so they can identify their flashlight from their siblings'.

-GLOW STICKS-these will be so much fun for the kids & you can even get the ones that turn into bracelets/necklaces so you can locate little ones in the dark. Again, no need to break the bank-A simple run to your Dollar Tree is all you need!

-Puzzles/bouncy balls/small non-electric games/Boardgames (checkers, chess, memory, etc) to pass time, even if by flashlight. Use "Spanish & English" memory pictured above and have "school" time as well!

-Deck of cards It's amazing what creativity comes out of children with a few hours of no electricity & a deck of cards! You can even have a "card throwing" party....You take turns showering each other with cards (have the "victim" put on a pair of sunglasses if you are worried your kids might get over excited).

-A small soft toy/stuffed animal. This doesn't have to be new. Surely you've got some extra stuffed animals laying around. *Frugal Tip* I purchased the animals above in May of this year at an Old Navy. They were left over from Christmas & originally had a clear plastic envelope attached to put a gift card in. I scored these for 10 cents each!

-A Ziploc bag of peppermints, butterscotch disks, or other hard candy. Make your own rules & put them in the bag. For example "You may eat ONE candy for every hour the power is out" AND/OR a Ziploc bag of cookies/cereal/pretzels/dried fruit

-An envelope with index cards with Bible verses/quotes about not being fearful (this comes in handy for my little worrier!)

-A coloring book & crayons/markers, dry erase board & makers, construction paper & scissors. All of these or some of these-it's up to you!!

GIRL-SPECIFIC ITEMS: Hairbrush/comb, hair bows, jewelery, nail polish, dolls/barbie dolls and accessories, horses, etc.

BOY-SPECIFIC ITEMS: cars, army men, airplanes/helicopters, legos, balls, Star wars figures, superheroes/action figures, guns *gasp!* (Yes, we let my son play with nerf guns!!)

IDEAS FOR TODDLERS: Use your judgement for putting in items above in your toddler's bag. Kids love to put things in their mouths & the glow sticks are toxic if they bite into & break them. The items below are geared specifically for those toddlers who will insist on their own bag!

-Bubbles are not only a distraction for little ones, but it often becomes a distraction for all. Allow the older children to take turns getting to blow bubbles for the younger ones to "catch".

-Plastic Eggs (from Easter) I can't take credit for this idea because I know recently I saw a blog post some where about it but after searching forever to get the link I couldn't track it down. But then I remembered, the for months (seriously months!) after Easter, my kids were still playing with the plastic Easter eggs. After having stepped on one too many, we finally decided to retire them to the attic until next Easter. But I went up there & grabbed about a dozen because I know that as soon as my older 2 saw him playing with the eggs, they'd want one. This way it gives them 4 a piece if they all want them at the same time!

-A Ziploc bag of cereal/cookies/pretzels/dried fruit

-A small photo album with pictures of things they like (for example, JoJo loves dogs, so his is filled with pictures of dogs, puppies, people with pets, cats, etc) You can see that I've combined actual photos (on the far right is my sister's former crazy Jack Russell Terror, I mean terrier) along with pictures that I cut out from my coupon inserts!

-An old cell phone. Toddlers love to pretend and mimic what they see their parents doing, and they love to talk so combine these together and BINGO! Entertained toddler (at least for a few minutes!) Just make sure that the battery is taken out of the phone because even if you have upgraded to a new cell phone & there's no longer service on the phone, a 911 Emergency phone call can still be placed!!

-A Ziploc bag with Paint store samples from your local hardware/super center store. They can look at the different colors, make a rainbow, you can have the identify things that start with "red" such as an apple, or the sky for blue.

Here's hoping that this post is in vain and that Irene decides she likes going a bit to the East and miss any further landfall!!!


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Monday, August 22, 2011

Super Shades Sale (Send the Trend)

Today only you can pick any of the sunglasses from Send The Trend for 30% off! All items are $29.95 before the discount with there is always FREE SHIPPING via UPS Ground! Use the promo code: FUNDAY (expires Monday, August 22nd, 2011 at 11:59 PST)

If you're a Project Runway fan like me, you might recognize the co-founder of STT, Christian Siriano and love the fact that you're getting designer styles without the designer cost. You also don't have to leave your house! Can I get an AMEN, or perhaps a more fitting "FIERCE!!"?!?

Saturday, August 20, 2011

Harris Teeter w/ the girl

Makenna Rae & I got to go out to the grocery store and left the boys home with Daddy! I had a list of items to get that were really good deals and I wanted to make sure I got the "saturday only" deals before they sold out.
Since my mom has an e-vic account, we used her's since she was not going to use them. Above was the first transaction using her Vic card. Here we go:
(2) Gushers fruit snacks: Evic sale $0.97 each ($1.94/2) used $0.50/2 q doubled, $0.94/2 or $0.47 each.
(1) Snackwells snack: Evic sale $1.49 used $0.75 q doubled, FREE
(3) Tic Tacs $1.29 each ($3.87/3) used (3) $0.75 q doubled, FREE
Band-Aid 20 count, mark down $1.49 used $0.50 q doubled, $0.49
Germ-X, 1.5 oz mark down $0.34
After that transaction, we did mine. I had the same deal for the fruit by the foot as the gushers above as well as the Snackwells, Bandaids and the Tic Tacs. There were also the 4 boxes of cereal at $1.97 each ($7.88/4) used (2) $1/2 q's which made it $5.88/4 or $1.47. Normally I don't buy these kinds of cereal, but since Braydon is really nervous about starting a new school, and he's been begging for some "cool" cereal for a while, that now would be the time to do it. I can swing $1.47 a box, not so much $4!!!
(3) Rhodes 12 ct. frozen dinner rolls $2.39 each ($7.17/3) used (3) $0.75 q's $2.67/3 or $0.89 each.
2 lb. pkg. of Ground Beef sale price $6.97. & 4 lbs. Boneless skinless chicken breasts sale price $9.95 *USING MY $10 mail in rebate for meat/poultry*
Hormel Black label Bacon sale price $3.07
(3) Perdue "Cars" Chicken Nuggets (2 pictured because that's what the kids ate for dinner!!) $4.99 each ($14.97/3) had (3) on package $2 store q's, $8.97/3 or 2.99 each
Bryers Pure Fruit Bars-had a raincheck for a FREE box from a meal deal a while ago & since it's the last week before school starts, I thought now would be a great time to cash it in! (Did I mention how I love how rain checks never expire?!?)
Harris Teeter Sweet Apple Chicken Sausage sale price $2.50 had an on pkg $1 off q $1.50
Items not pictured:
(2) Minute Maid 10 pk juice boxes Evic sale $1.77 ($3.54/2) used (2) $1 q's $1.54/2 or $0.77 each. (these were not pictured b/c I took them out of the pkgs to put in the bottom drawer of the fridge!)
Harris Teeter Honey Wheat bread $1.69
(2) Aunt Jemima French toast 10 count boxes sale price $1.49 (or $2.99/2) (these & the waffles below were taken out of the box & individually wrapped for Kenney's work to make it faster for him to grab in the AM)
(2) Aunt Jemima Homesytle 10 count waffles sale price $1.49 (or $2.99/2)
I had one $2 off your next purchase catalina that I used, so altogether, I paid $ 51.52 OOP. I will get $10 of that back from my meat rebate, which will bring it down to $41.52. BUT I just realized that they didn't give me the Evic price on the my 2nd transaction for the Snackwells, so I'll have to go back tomorrow & I'll get the full price back! YAY!! So that means that the total will be $39.02 for $116.86 worth of food (for transaction #2 only)! This equals out to a 67% savings, which is not bad considering the meat and breakfast food I got!

Target Take Home

We actually had no "real" plans for today, so I decided I could use it to make a few trips to a few stores to get some deals! We went to Harris Teeter first & came home to drop of the perishable stuff & pick up the boys. It was a rather long trip to Target, considering the ENTIRE family went. You know how that goes: "Mom, I have to potty NOW!" (happened 3 times), "But can we puh-lease go look at the toys? (too many to count!), etc.

On top of the whining from Kenney & the kids (just kidding about Kenney...well, sorta!), the cashier didn't scan all of the coupons (even after he swore up and down he did) so I had to go over to customer service & try to explain to the lady why the cashier hadn't scanned all of the coupons, (She for some reason couldn't understand the concept of a "Target" q and a man. q!) But we survived, and made it home without any major blow ups!

Here's some of my "scores" from today's trip to Target.

This is by far the deal that I was really excited about! We were in the "Back to school" aisle looking at lunch boxes for Braydon. He wanted the Star Wars lunch box which was like $10. Then he wanted one that had a water bottle attached to it that was $13.99. I told him that I really just could not justify paying that much when he has a lunch box that is still in great condition. We could just check out other stores to see if there were any other deals. He was disappointed but he quickly was distracted by the camping gear. I almost told him he couldn't go down the aisle, but I figured if it got him to stop whining about the lunch box then it was worth it. And then I spied this baby!

This is a "Genuine THERMOS Brand" lunch cooler with a vacuum insulated 16 oz. stainless steel commuter bottle. It can keep food warm for up to 8 hours and keep food cold for 12 hours! I was so excited when I saw the price: $7.74!!!! It's original price was $30.99 which translates to a 75% savings!!! I almost held my breath because I figured of course Braydon wouldn't want the one I found on clearance. But as soon as I held it up and said "Look B check this one out, it comes with this really cool water bottle!" , he was sold!

I held it up at Kenney because he needed a lunch box too (because we've decided to commit to eating lunches from home) and he was very excited about them! I was able to get 2 lunch boxes with the thermos for less than 1/2 of the original price of one!! Again, these were not in the Back to school section, they were found near the camping/sports section!

We also got some of the Schick razors: 3 Intuition Naturals, 3 Quattro for Women. They were on sale for $6.49 each, you get a $5 gift card back when you guy 2 and I combined that with 6 $2 coupons. I decided to do these transactions first and individually so I could use the gift cards right away. The 1st transaction was $9.52 and we got a $5 gift card to use towards the next transaction. I had a personal gift card with me to use so I didn't acutally pay for any of these transactions out of pocket (OOP). The next 2 transactions were $4.52 each after the $5 gift card from previous transaction, and I again paid the rest with my personal gift card. Altogether, the 3 transactions were $18.56 for 6 razors with an extra $5 gift card so if you count that, it's $13.56/6 razors or $2.26 per razor which translates to a 74.8% savings.

We stumbled upon the clearance section as the guy was just putting out newly "marked down" items. Most of them were just BARELY "reduced" by 30-60 cents which does not impress me at all unless I have an amazing coupon. But the Cutter bug spray was marked from 3.99 to 2.78 and I had multiple coupons for $1.50 off any 1 Cutter item. With the coupon and the clearance, it totaled $1.28 before tax, which translates to a 68% savings. It's an "okay" savings, but seeing as how my family is super sensitive to bugs and bug bites, for us it was a really good deal, so we purchased six. I will probably go back and get more if I can score some more $1.50 q's.

The next thing we found in the clearance section was Old Spice deodorant, (2.6 oz with a travel sized 0.5 oz deodorant included) "marked down" from 3.99 to 3.38. Again I put that in quotes because I don't find 60 cents to clearance worthy. But I had a Buy one get one free coupon, so it would be 2 full sized deodorants and 2 travel sized deodorants for 3.38. When I did the math at home it was only a 57.6% savings which was okay, but I'm used to getting a much better deal. Call me a coupon snob but I frown upon paying that much for deodorant when I'm used to getting it for free or less than $1.
We also found a bunch of "Twisted Sista" de-frizz conditioner marked from $4.99 down to $1.24! This is what I consider "marked down" or clearance price. Although I didn't have any coupons, the clearance price itself is 75% savings so we got all they had which was only 5. These are perfect for Makenna Rae's curly hair!! Just the other night at bath time I was saying I think it was time that we "updated" her hair products from baby shampoos to "big girl" shampoo & conditioner-something that is better for her curly hair. I paid $6.20 for all five of them which is a fantastic price!

Other notable items purchased today were two 10 pk. of Duracell Batteries on sale for $5.99 plus (2) 1.50 Target q's and (2) 1.oo man. q's which made it for $6.98 for 20 batteries. Market Pantry Apple juice 64 oz. containers were on sale for 1.75 each and I had a $1/2 Market Pantry juices Target coupon, which made them $1.25 each. My kiddos are juice addicts so this was a good deal. We also got 2 boxes of NutraGrain cereal bars that were on sale for 2/$5, and we had a man. q for $1/2 boxes and a Target q for $1/2 boxes, so we got them for 1.50 a box.

All in all, the trip was pretty decent, getting us things we use regularly at a pretty decent deal. We spent $32 OOP on our trip which is amazing considering my entire family went in Target, spent about 1.5-2 hours in there!!

Thursday, August 18, 2011

Old "weigh" to do things

As I was going through old pictures the other day, it hit me...I really have lost weight! I mean I know I've seen it on the scale and my clothing size, but to see pictures from even a year ago really struck me. Want to see some examples? Pictures on the left are "old", pics on the right are current.
This morning marks my 60 lb mark. (This is including the "baby" weight from JoJo). It's taken me almost 2 years to lose that much. But I can honestly say that I do not feel like I'm starving myself or killing myself in the gym. When I can work out, I workout. When I can't, I don't feel guilty. (although my body tells me b/c my hips start hurting when I don't work out a lot) When I want dessert, I allow myself the freedom to do so. I don't kick myself for allowing myself something I really want. And I have to say, this has been very freeing for me. I'm not on an emotional rollercoaster based on my failures or shortcomings on my success in weight loss. I would still like to lose 15 lbs but I'm okay with it coming off slowly, as long as I can still have dessert!
These are taken in the same place almost a year apart. Picture on the left is from July 21st, 2010, picture on the right is from August 4, 2011.

Sunday, August 7, 2011

Testing...1 2 3

It's that time again....We're back at the Ronald McDonald House again for another test tomorrow and more clinic visits on Tuesday. Jordan will have his laryngoscopy under general anesthesia at 9 am, but we have to be there at 7 AM. Hopefully it'll be done quickly and we'll be back at the RMH to get some sleep in the afternoon. I really hope he does well with the anesthesia this time. It hasn't been that long since he had the bronchoscopy, and he's had some more seizures a week ago. He also has been on antibiotics and sterioids in the past 2 weeks for resp. issues. All of this makes me worried that he may have complications and I really don't want to deal with any other "issues" at this point.

JoJo is very restless tonight and keeps waking up crying. I'm awake as usual-it's 3 AM and I have to be at the hospital in 4 hrs which totally stinks. There's always lots on my mind the night before JoJo has any big test, especially with his recent illnesses I just mentioned. But besides just the normal pit I have in my stomach, I'm really missing my family right now! It's pretty lonely at night time here.

Well, maybe I should rephrase this. I'm really missing my husbad, most of all. I know Braydon & Makenna Rae are busy having a blast at Ama & Papa's house as always!! And tomorrow starts our week long Vacation Bible School at our church, so they're looking forward to that. They probably haven't even noticed I'm gone! Look at the smiles on these faces...They say "Haha! We're being spoiled while you're gone and there is NOTHING you can do about it!!" don't they?!?

I can honestly say that it's been a long time since I can remember missing my husband like this. Not just saying that I miss him-I mean really missing him. And it's kind of a nice feeling, if that makes any sense. I've realized how independent I'd become, so it's nice to feel that way again. If nothing else, this man makes me laugh and I could really use some laughs right about now....

And yes, this is indeed Kenney watching the NFL draft wearing a little kid's Patriot helmet. It's okay to be jealous of my cool husband!! I hope it brings a smile to your face like it does to mine....

Wednesday, August 3, 2011

God's gonna trouble the water

I remember sitting on my couch in August 2005 mesmerized hour after hour watching the news converage of Hurricane Katrina and the aftermath when the levee system failed. I sobbed for days-I felt as though I knew someone who was there, but I didn't. In reality, I had never even been to New Orleans but yet my heart ached for the elderly husbands trying to fan off their wives. My arms hurt for the moms having to hold their baby for hours and hours in the heat, humidity, bugs, etc because there was no where else to go. I clung to Braydon and just couldn't imagine what it would be like if we were in that situation. The truth is, that this easily could be you, or me, or someone we know, and that's part of why it affected me the way it did. I am self-admitted news junkie at heart, but this disaster impacted me in such a way that I will never forget. (Interesting side note: My husband's family is actually from Louisiana and at that point I had just met Kenney and knew nothing of his family's heritage there. It is cool to look back and think maybe that's why I was so engrossed, but I didn't know it!!)

About a month ago, I watched a documentary called Trouble The Water. In honor of the anniversary of Hurricane Katrina that's coming up on the 28th of this month, I wanted to show the trailer and promote this award-winning film. This is a raw first hand account that follows people through the storm, and as they return to the Lower 9th Ward to try to rebuild their homes AND their lives. The trailer is above & the description of the film is below. You can find this film in the documentary section on Netflix and can be watched instantly.

But first, I want to point out something that has always really bothered me about some of the media coverage of Hurricane Katrina and the misconception a lot of people have. What really bothers me is people assuming that the people who stayed behind were refusing to comply with the government officials who issued a mandatory evacuation order and that some how those people who were stranded on their roof tops somehow "asked for it" by staying behind.

I'd like you to pretend for a minute that you live in a very urban area, such as Chicago or NY. Many people opt not to have a car in these areas because they use public transportation for many reasons: there are costs for parking your car, the traffic is horrible etc. Now these people who rely on public transit are indeed at the mercy of the public transportation system.

That being said, many of the people of NO who stayed behind did NOT stay because they wanted to. These people who did not have transportation means simply were without a choice. If they did not own a car, how were they supposed to evacuate? These people, especially those who lived in poorer areas like the Lower 9th ward, didn't have the extra money laying around to rent a car. Or even if they did, maybe they didn't have a driver's license or the required credit card to be able to rent a car. Having been in very tight financial spots before, I can absolutely understand that some people just could not afford to leave. You cannot issue a mandatory evacuation and expect people who don't own a car and rely upon the public transportation system to be able to leave. There was absolutely NO city/public transit provided to help aid in evacuation for the people who had no other alternative.

Some residents were unable to evacuate because they had elderly, sick or handicapped family members and couldn't leave them behind. Others still had no television or even power in some of the lower 9th ward and didn't even know a storm was coming. Some didn't even have a place to actually evacuate to. Many of the residents of NO were 4th and 5th generation city residents with their entire family residing in New Orleans. A good majority had never even left the city before. Imagine never having even looked at map or knowing what state was directly north of you. This is the absolute reality these people faced.

Please consider watching this documentary and seeing how this storm forever impacted the lives of so many. It will leave you encouraged by seeing genuine kindness and selflessness displayed in a time of chaos and the desire to better their lives instead of living as a victim. It will also stir complete frustration inside of you by the absolute injustice that has and continues to happen to the survivors of the diaspora caused by Hurricane Katrina.

From Trouble The Water Film's website:

Nominated for an Academy Award® for best feature documentary, TROUBLE THE WATER takes you inside Hurricane Katrina in a way never before seen on screen. It's a redemptive tale of two self-described street hustlers who become heroes-two unforgettable people who survive the storm and then seize a chance for a new beginning.

The film opens the day before the storm makes landfall-twenty-four year old aspiring rap artist Kimberly Rivers Roberts is turning her new video camera on herself and her 9th Ward neighbors trapped in the city. "It's going to be a day to remember," Kim declares. With no means to leave the city and equipped with just a few supplies and her hi 8 camera, she and her husband Scott tape their harrowing ordeal as the storm rages, the nearby levee breaches, and floodwaters fill their home and their community. Shortly after the levees fail, their battery dies.

Seamlessly weaving 15 minutes of this home movie footage shot the day before and the morning of the storm with archival news segments and verite footage shot over the next two years, directors Tia Lessin and Carl Deal tell a story of remarkable people surviving not only failed levees, bungling bureaucrats and armed soldiers, but also their own past.

Directed and produced by Tia Lessin and Carl Deal and Executive Produced by Joslyn Barnes and Danny Glover of Louverture Films, edited and co-produced by T. Woody Richman, with addiitonal editing by Mary Lampson, Trouble the Water features an original musical score by Neil Davidge and Robert Del Naja of Massive Attack, and the music of Dr. John, Mary Mary, Citizen Cope, TK Soul, John Lee Hooker, and the Free Agents Brass Band and introduces the music of Black Kold Madina.

Trouble the Water has been supported by grants from the Sundance Institute, the Open Society Institute, the Ms. Foundation for Women, the 21st Century Foundation, the Fledgling Fund, Working Films, the Ford Foundation, and is a project of Creative Capital.


2009 Academy Award ® Nominee, Best Documentary Feature

2009 Gotham Independent Film Award ™ for Best Documentary

2009 NAACP Image Award, Outstanding Documentary (Nominated)

2009 Producers Guild Of America For Feature Documentary (Nominated)

2008 Sundance Film Festival Grand Jury Prize

2008 Full Frame Documentary Festival Grand Jury Prize

2008 AFI/Silverdocs Special Jury Prize

2008 Council On Foundations Henry Hampton Award for Excellence In Film And Digital Media

2008 Working Films Award

2008 Kathleen Bryan Human Rights Award

Official Selection, 2008 New Directors/New Films (Museum of Modern Art and Film Society of Lincoln Center)

Trouble the Water was named best documentary of 2008 by the Alliance of Women Film Journalists and the African American Film Critics Association. And it was listed on many critics 2008 top ten films lists -- in the Los Angeles Times, the New Yorker,, Entertainment Weekly, The Village Voice, Times Picayune and New York magazine among other publications. Roger Ebert and Manohla Dargis both included Trouble the Water in their "best of 2008" lists.

Monday, August 1, 2011

01522 steps back...

It's really hard sometimes to be the parent of a "sick" child, especially when he's not "sick enough". He doesn't have a life threatening illness. He's not in the PICU (thank God!). They look at Jordan and see what looks like a perfectly healthy toddler. It's extremly frustrating though because I am the one up with him in the middle of the night as he screams at the top of his lungs and can't calm him down, when no one else can see it. I am the one who has to watch his eyes roll back in his head and his body go limp when he has a seizure. I'm the one that has to grab him from the booster seat to hit his back because he's aspirating on food. These are the things I deal with that no one usually sees.

It's hard because people can see the needs of the parents of a "SICK" child (gas money, meals, childcare, etc.) But the parents of a kid who's not "sick enough" often gets overlooked. I'm not saying this to complain, it's just life and it's what I experience.

Just an idea of how much a "trip" to UNC costs:

Gas: $20-$30
Room at the Ronald McDonald House : approx. $20 ($10/night)
Food: We try to eat what we can at the RMH, but it usually is another $15-$20.
Parking: Parking is up to $10 per day.
Babysitters: varies any where from $20-$100 depending on the availability of my parents and whether they have to work.

Usually an average trip to UNC costs us around $100-$150 depending on whether we have to pay for babysitters, and these are all out of pocket expenses. Since January, we've made 8 different trips to UNC.

Again, I'm not saying this to complain-I'm saying this as a wake up call to anyone who might read this. If you know of a family going thru any sort of extended care with their child, especially if they have other children, please ASK THEM what needs they have. They'll feel bad enough that they can't "do it all" and most likely won't ask for help, even if they need it. Pass on the kindness, because you never know when you'll be needing help but not want to be a burden.

Friday, July 29, 2011

New Day, new doctor

Yesterday, we headed back up to UNC to meet with our newest addition to JoJo's care team, Dr. Amelia Drake. With each new doctor we add to the team, we have to go through the whole "get to know you" period. I did a lot of research about Dr. Drake, and everything sounded good. Just a few days prior to our appointment, I found out that she was named by US News as "Top Doctor". This indicates that she is among the top 1% in her specialty in the entire country which was completely reassuring.

We waited for quite a while, but then when she came in, it was very fast. She examined him, and discussed with me what she and his pulmonologist were worried about, which was the cleft I described in the Q & A post. We scheduled his laryngoscopy (similar to the bronchoscopy) for Monday, August 8th. She reassured us that most likely if he did have the cleft that it was probably a small one.

JoJo of course sported his Wolfpack Red and birdie in his arms. A few of the ENT staff tried to bribe him with an ugly-looking ram of some sort, but my smart baby said no! =) Raising him right!

Friday, July 15, 2011

Q & A....

Lots of good questions have been asked about JoJo and all of his testing/treatments, so I thought I'd answer them on here so everyone could read it because I'm sure your wondering, right?!? If you have a question you'd like to have answered, feel free to post an anonymous comment below & I'll try to update the blog with the answer!

1. What has Jordan been officially diagnosed with?

JoJo's "official diagnoses" thus far include benign myoclonic epilepsy, asthma, and Gastroesophageal reflux disease. He's also had RSV which placed him in the hospital when he was a baby chronic lung infections & sinusitis as well as Fevers of Unknown origin. Pending dx's may also include laryngeal cleft and periodic fever syndrome.

2. How much medicine does he take/how many different prescriptions does he have?

Jordan has several prescriptions he takes on a daily basis. He is on Keppra for seizures, which is twice a day. Of all of the anticonvulsant drugs, this one has the least side affects and does not require frequent lab work. He has shown zero side effects (thank God!) He also takes several medicines for the treatment of his asthma: Singulair, pulmacort and albuterol (nebulizer treatments) They've added in Prevacid twice a day for the reflux as well as prescribing thickened liquids. (nectar consistency) We have an amazing pharmacist who I feel knows our family really well-in fact the other day, the dr faxed in the prevacid script but in the wrong form & called me to double check that it was the wrong form (capsules instead of tabs that dissolve)

3.What tests & procedures have they done/what did they test for?

You name it, I'm pretty sure they've tested him for it! In all seriousness, he's been tested for Cystic Fibrosis (sweat test), he's had multiple immune work ups that tested for immunodeficiencies, he's had allergy testing, he's been tested for lyme disease, lupus, and double-stranded DNA. He's had an EEG, 3-day ambulatory EEG, an MRI and CTs of his brain, he's had multiple X-rays of sinuses and chest as well as regular blood work and urine cultures. He's had a bronchoscopy and a barium contrast swallow study. He's had multiple stool sample studies as well to rule out any kind of parasites, fungus, etc. He's had ear tubes placed as well when he was very young (5 months old I believe) for recurrent double ear infections that did not respond to treatment.

4. Have you thought about getting a 2nd opinion?

The good news is that there are several options for us to consider since we live in an area where there are many hospitals. In particular, we have access to some top research hospitals and medical schools found. So to answer this question: Yes, we've thought about that when JoJo's infectious disease doctor "Dr. C" kinda blew us off. We looked at Duke's Pediatric Infectious Disease program after we consulted back with our regular pediatrician. She asked her fellow pediatricians and the consensus for a recommendation for peds ID was Duke. We almost made an appointment with them when our pulmonologist, who returned from maternity leave, took charge of the situation and said that she would not rest until we discovered what was going on with Jordan. We promised we'd stick with UNC as long as we were getting somewhere, and we would call Duke as soon as we felt weren't. But JoJo's pulmonologist is awesome! She's our CHAMPION-she meant what we said, and we're so thankful to have her! So for right now, we're staying at Chapel Hill but we still have the numbers for a second opinion at Duke, as well as another out of state nationally known children's hospital.

5. What is a laryngeal cleft and why has it taken them so long to find it?

A laryngeal cleft is a rare abnormality of the separation between the larynx, or voice box, and the esophagus. Normally, when the larynx develops, it is completely separate from the esophagus so swallowed foods go directly into the stomach. When a laryngeal cleft occurs, there is an opening between the larynx and the esophagus so food and liquid can pass through the larynx into the lungs. There are several different types of laryngeal clefts (Types I through IV), classified based on the extent of the clefting. (from the National Institute of Health Office of Rare Diseases Research)

This is in fact a congenital birth defect, meaning it was present at birth, and it affects 0.01% of live births and affects boys more often than girls. It is usually found early on during infancy due to the presenting symptoms: feeding problems including aspiration, poor weight gain/growth, chronic lung issues including wheezing, recurrent pneumonia, etc.

JoJo has never really had feeding problems as an infant, and his weight & height, although on the low end (between the 5th-10th percentile), his growth charts continues to remain consistent. He's had recurrent pneumonia & bronchitis along with his asthma symptoms which include wheezing & coughing. Given the fact that he kept getting pneumonia, bronchitis and things of that nature, we assumed he had either an immunodeficiency or something was wrong with his lungs. We did not realize until just recently that he was aspirating. It was not until the day before his bronchoscopy when his pulmonologist asked us if he coughed or choked a lot when he drank. At first my initial reaction was no-but the rest of the day I watched for it. Sure enough, almost every time he had a drink, he was choking and coughing. Once the bronchoscopy came back showing his lungs were developed correctly and no bacteria that grew was abnormal, the team of doctors decided to look at the aspiration possibility. And that's where we are now.

6. I thought you were an NC State fan! Why are you going to UNC?

OF COURSE WE'RE NC STATE FANS!! But even the pride for our favorite college would not stand in the way of getting the best care for our son and right now, the NC Children's hospital gives us just that! Not only is the UNC peds pulm. department ranked number 10 in the entire country by the US News and World Report, (NC Children's hospital is the only children's hospital in NC to rank in the top 10 in any department by the way!) but we've also been treated so well at UNC-almost every interaction with someone from the UNC has been positive! The nursing staff is amazing and JoJo has become a nurse favorite. They repeatedly go out of their way, above and beyond what they have to in order to make us comfortable. They do their best to schedule all of JoJo's appointments and procedures around the same time since they know we drive a ways to get there. The radiology department always thinks of not only Jordan, but of brother and sister at home. Every time we return home from UNC when he's had to have an X-ray or CT, he's always been able to bring his siblings stickers home! Even the valets are good to us-every single time we go, at least one of them remember's JoJo's name which is pretty impressive. (Maybe we tip well, or maybe JoJo's just really memorable...either way it's pretty remarkable.)
That being said, we do our part to make sure that we let our loyalties be clear every time we are there. JoJo usually rocks an NC state outfit or shirt and Mama usually sports hers too. We are almost always are given a "hard" time about it every time too. Usually it's a funny comment like, "Normally I wouldn't treat an NC State fan, but he's so dang cute I guess we can make an exception!" Sometimes on the way home, we even stop by the GO PACK store in Raleigh! Here's a few pictures to document it!
Jordan during his 3-day ambulatory EEG not only wore his Wolfpack gear, he also sported it on the gauze!
At the NC Children's Specialty Clinic in Raleigh before we met our diagnostician "Dr S"
Worn out but wearing his wolfpack red!
Have any other question about Jordan or his "issues"? Feel free to leave a comment below and I will do my best to answer it! Thank you for your continued prayers as we journey further on this road, even though I thought we were almost finished!

JoJo update

Hey everyone! Just a quick update about Jordan's recent trip up to Chapel Hill. I'm sorry it's taken a few days, I just wanted to make sure I had all of my information before I shared everything so I didn't have to keep correcting and/or updating. We saw JoJo's infectious disease doctor ("Dr.C") again who order repeat xrays of his sinuses, and said that he was going to be following JoJo along, but that his diagnostician ("Dr S") would now take over his place for the most part since Dr. C felt he had tested everything he could test for and they had all come back fine. This was a bit of relief for me b/c the ID dr was always late and did not "do" much at any visit.

After that appointment, we saw Dr S and he said the recurrent fevers would probably just fall under a periodic fever sydnrome that would not need to be treated. It would just have a label but not treatment. He repeated some immune tests Dr C had already done becaue one of them was quite high, but according to Dr C "not high" enough to be of concern. Dr. S said he'd only ever seen one patient with hyperIgD syndrome, but he wanted to make sure we had "dotted all our i's and crossed all our t's" So he repeated IgD and IgE levels along with a CBC (blood count). He thought that if after he repeated those counts & everything came back normal, that he felt confident that JoJo probably did not have one diagnosis that could incorporate all of his "issues", that it probably would just amount to either being multiple dx's or just being unlucky.

After those appointments, we went and had his xrays of sinuses and chest done again followed by his barium contrast swallow study. The speech lady told us that JoJo was in fact swallowing food whole and that he's also aspirating both liquids and food. They prescribed thickened liquids for him. After that, she said she would talk over the test again with our pulmonologist, we'll refer to as our "Champion" and we'd get the prescription for reflux the next day. I left there relieved that we were at least getting some where and hopefully, once we corrected the aspirating issue, maybe we could get rid of all his chronic lung issues. That night at the Ronald Mcdonald house, we were able to relax, enjoy the cupcake decorating that a great group of volunteers put together and the commradary of the other families there. When we checked out of the RMH on Thursday AM before his last appointments, I felt so relieved that this "trial" was almost behind us. In fact when the lady asked me when we'd need to be put back on the Waiting List, I proudly told her that Lord-willing the next time we'd be back would be to volunteer! We all did a little dance and were excited. I remember that feeling as I walked to the car of how good it felt to be almost done!

JoJo enjoyed "cupcake decorating" one evening at the Ronald McDonald House, which meant he ate his weight in Jelly Belly's!

JoJo with his friend Victoria on the butterfly chair out back of the RMH!!

But when Dr Champion came into the room, I knew something was up right away. She normally comes in and is all cheery and saying how everything was looking good. But she started off by saying "Well, it's been quite a few days for you guys huh?" Then I got a knot in my stomach and I knew it wasn't over so fast! She said that given the fact that he was aspirating as the food and drink goes down rather than having reflux aspiration after the fact, she said she's concerned that he may have a laryngeal cleft. Basically it is a congenital defect/malformation or hole near his voicebox that keeps food and drink from going down into the lungs. She referred us to an ENT at Chapel Hill for another bronchoscopy type test because she said although the flexible bronchoscope could see somewhat, it was not as sophisticated as whatever the test he needs is. She said at his age, he really should not be aspirating unless there was an anatomical cause for it and that it would most likely require surgery to repair it. She also said that when she looked at the path reports from the bronchoscopy, there was a lot more food particles in there then there should be. She prescribed him Prevacid for his reflux issues as well. When she looked at the xrays from the day before, she said that his chest xrays were clear but his sinuses were thickened indicating sinusitis (sp?) but she thought it was not warranting another antibx script as of right now. She mentioned the fact that if he did have the cleft, it would not explain away the fevers of unknown origin, but that again, that was Dr. S territory.

I know this sounds silly when I say that I'm disappointed and bummed. I know it could be worse. I know that this will probably lead to him being a lot healthier in the long run. But I was on such a high yesterday morning when we checked out that it really caught me off guard when she said it wasn't "over" yet. Again, I know families that have kids that are battling life-threatening diseases. Several of them are my good friends and I've stood by their side during treatments, surgeries, biopsies, etc. What I also know is that my disappointment that my son's not done with his road of testing, doctors, hospital stays, etc is very real, regardless of the comparison to another. We all have our own struggles, our own road to journey on. I was just thinking that our road was almost done with hospitals and the medical field in general and turning on to a different portion of the road, like maybe a nice straight, smooth one. At least for a little stretch, anyways. (I am a realist and understand that I have 3 kids, 2 of which are of the male persuasion and therefore cannot expect to be "done" with hospitils, doctors for many years haha!) Maybe that smooth stretch of the road is just right around the corner but we'll never know if we don't keep going forward despite our road being covered with potholes....

This boy keeps us laughing: I asked him to make a silly face, and this is what he gives me!!