No more mangoes!

I have become far more educated in allergy 'hypersensitivity' and 'oral allergy syndrome' and just how closely related the mango fruit is to cashew nuts than I ever cared to last weekend. And I learned pretty quick thanks to the bald kid's anaphylactic reaction to a tiny jar of mango baby food.

I also learned at what point during an allergic reaction to use Ethan's Epi-pen. Well, it's sooner rather than later.

Long story short-I put said culprit in Ethan's feed about 9am.
Around noon Parker is holding Ethan and hollers at me that he just threw up. I check him out, and it's all mucous.
Clean bald kid up, sit him back with Parker.
Brian leaves for work around 12:25 and on his way out mentions to me Ethan looks like crap.
Parker hollers at me again-Ethan threw up again.
I hurry and dress thinking I'm about to take a puking kid to Urgent Care to find out he has the flu, strep or some other germ making its way around this time of year.
While packing a bag for the bald kid, Parker hollers for me to come look at E. Now.
He has clawed his button bloody, is scratching at his neck, which is now swollen and has hives on it the size of golf balls.
Freak out. Now.
Give Benadryl.
Find Epi-pen.
Did I mention his face is purple and lips are gray?
He is still breathing.
Mentally debate for 37 seconds to call 911 and wait for ambulance or pack him up and drive the 1.7 miles to Children's Urgent Care?
Grab and run.
Almost at Mercy and he begins to wheeze and suck air in his car seat.
As I'm yelling to him that it will all be ok, I'm also screaming some choice obscenities at the Sunday driver in front of me talking on her phone, looking at herself in the mirror and driving 12 mph in a 40 mph zone.
Not my finest moment.
Not my calmest either.

Cut to front of line at UC and show Ethan to Triage RN.
She calls back that a kiddo has to come back now.
Tech comes to get me and asks if we can weigh him first.
I suppress my urge to punch her. Probably only because I'm carrying Ethan and don't currently have a free hand with which to do so.

In treatment room with 3 nurses, 2 Resp Therapists, UC Dr and ER Fellow and once hooked up to a monitor and see his sats are 72 and his heart rate is 44, hives are covering his face, neck, chest, groin, head, eyelids, and out comes the order for the Epi-pen.
A plunge into his thigh, scream, cry and hold for 10 seconds, during which time I'm not sure anyone in that room took a breath.
Bring on the oxygen, steroid and Zantac. Oh, and get another Epi-pen ready. Just in case.

Fortunately in the 5 hours we got to be observed, he did not relapse. Which can sometimes happen with an anaphylactic reaction when the Epi wears off.
I also learned that the mango plant is botanically similar to poison ivy, and pollen producing plants. Thus if you have a pollen/ragweed allergy, there is a huge list of fruits and veggies you could also be allergic to. Since we already know he is allergic to bananas, he probably has a significant ragweed allergy, thus the reaction from the mango. Oh, and if you are nut allergic-like E is to peanut, cashew, etc., Nuts have a huge cross-reacting tendency with pollen allergies.

Sorry I didn't get a great pic of the hives and fabulousness of his first ever Epi-pen incident.
I will try to be more calm next time and snap a decent pic.
Wait, there won't be a next time.
No more mangoes for Ethan.
Or bananas, or cherries, or oranges.......

The Best News Ever!

Waking me while I sleep during the day is like waking a sleeping bear, and can be detrimental to your life.   My hubby knows this well.   But being awakened, after only having been asleep for about an hour and half,  to get the news we got on Thursday was well worth the lost zzzzz's.  Who am I kidding, I was right back to sleep, only happier!

We received news Ethan has been approved for the Sarah Lopez Waiver.  The Lopez waiver is a Missouri program designed for children like Ethan with parents like us.  There are guidelines and criteria. An application process, and only 216 spots in the entire state of MO.  We began putting together the packet last November, met with the intake coordinator in April of last year and were told we would probably be on the waiting list for 2-5 years.  10 months is unheard of!!!

The waiver is for kids with a "permanent and total disability" who because of parental income levels are unable to qualify for any type of funding for the child's needs.  It is for families who want to continue to care for their special kids at home, with no intention of seeking institutionalized care, but need a little financial help.  I don't know all the exact details of the waiver, but this I know:

We, and Ethan will be re-evaluated annually for eligibility, and as long as we meet criteria, he can remain on the waiver until he is 18 years old.
This is why the wait to get on the waiver can be so long.

A portion of the funds MUST be used for respite care or nursing care.

A portion of the funds will cover equipment needs. 

Ethan's diapers and formula will be covered. Woo-hoo and snap clap!

We don't receive any funds, we pick up the supplies at a specific location, or they are shipped to our home.   Nursing care and respite care is paid through the waiver.

Ethan's private insurance coverage will remain in place, primary, and billed first.  Only after that will Medicaid consider charges.

With more surgeries for me this year,  having care for him while I'm at home recovering keeps Brian from having to use vacation and sick time.  Because although I'm home, I won't be able to pick him up, or put him on the bus, or even get him out of his bed.
Having his diapers and formula covered means we don't have to fret about how to feed or diaper him while I'm not receiving a paycheck.
Having respite care means we both can attend the other children's events Ethan would not enjoy or do well at, and the guilt as a parent of having to chose which to do.
As one other amazing special needs Mom wrote me- "it's life changing".

Caring for a special needs child, especially one with the level of care Ethan requires is a full time job in itself.  A job I love and cherish, but can be exhausting while also working a full time job.
 He will never,  and I mean NEVER be able to care for himself.
 He will wear a diaper forever.
He will more than likely never be able to obtain enough nutrition other than by tube feeding.  
We could lose him any time to a simple cold.
He will never walk, talk, play little league, go to college, marry or have children.
I don't tell you this for pity, that is the last thing we want people to feel for him.  I tell you this to give you some picture of what our daily lives are like with him.  Our schedules revolve around him and his needs. And many times the needs of our other children, and often ourselves come second. Not anything any parent wouldn't do, but ours will never grow up and lead his own life.

He and his needs are with Brian and I forever.  He is our very own little Peter Pan.
He does make us laugh, smile and see the world in a different light. Ethan sees no hatred or prejudice, and wants for nothing more than to be held and tickled and listen to Taylor Swift and hang out with his sissy and his Bo-Bo.  To roll around on the ground and watch his crazy dancing light up toys and chew on his fingers.

He really is simple. In a complicated little body.

We are thankful God gave us him.

And the Lopez Waiver will help make his life, and ours a little bit easier.

New Year, New Plans

2013 has started out pretty busy and hectic-so I decided to take 90 minutes to my self today and enjoy a much needed massage.  It was so nice and relaxing I'm sure I left a puddle of drool under the table.  I asked for 'firm' pressure, because while I was on chemo, I couldn't have it-and this girl knew what she was doing.  I'm only hoping I can avoid getting sick in the next couple of days.  It seemed over the last year after every massage, as all the toxins are leaving my body, I would get a little under the weather for some reason.  I really push the water, and have had NO SWEETS today at all-even when my husband tempted me with Haribo Gummy Bears.  Be strong. I told myself. and I was!

We are beginning a healthier regimen around the Rawley household this month-and this one's going to last.  I was shocked last weekend when I realized the little junk food I had bought for stocking stuffers and the soda we had in the house for holiday gatherings was all gone!  In 4 days time my kids ate 4 boxes of pop tarts, 18 choco-granola bars, a 3lb bag of gummy bears, a pack of twizzlers, and drank 14 sodas.  Seriously.  Parker is the bigger culprit, as I found most of the soda cans in his room.  So instead of locking up the food, now that it's all gone, it's not coming back in the house.  My last grocery trip brought home spinach, carrots, apples, celery, broccoli, cauliflower and NO SUGAR CEREAL.  I was being lazy-cause that's really the only reason-and buying the kids the big bags of Malt-o-Meal cereal because I wanted them to have breakfast food.  Well, that crap is not food, and my grocery bill is much cheaper when I don't buy it at all!  I made some spinach/egg cups the kids just have to microwave, organic oatmeal, and some pumpkin muffins-without the oil.   That's breakfast food.    We've eaten at home every night since New Years, and it's amazing how much healthier we eat when we take a few hours each week to plan out a menu and thaw out food.  And how much money we save.  New concept, I know, right?  Brian is making carnitas street tacos for dinner tomorrow night, and my mouth is watering just thinking about it!  I've pre-made a meatloaf for Wednesday, then it's chicken Thursday and guiltless burrito Friday.   I'm down 7 lbs since NYE, and plan to be down a lot more this year.  As long as my knee cooperates.

Brian is still working PM's at Shoal Creek, he likes it well enough, it is nice for him to come home for dinner during the evening.  Even with me working nights, we can still almost always eat dinner together.  He has been asked to take a couple of other positions within the PD at other stations, but can't be let go right now because of how short they are at his station.  It's frustrating, as this most recent one is #4 he's requested, and been turned down.  On a positive note, one reason his command staff isn't letting him go is because of how well he does his job, and they don't just want a 'warm body' to replace him.  It's nice to be needed.  Frustrating, but nice. 

Hailey's club VB season starts very soon, and her team is pretty awesome looking this year.  I really like her coach and her assistant coach has worked with Kerri Walsh and Misty May-Treanor (of the US Olympic Women's Beach VB Team, yep!) and is really focusing on conditioning these girls.  One thing that lacked on her team last year.  The girls were pooped by bracket play and fell apart from fatigue.  That and healthy meals-some of the girls were popping 5 hour energy drinks at tourneys last year, and I don't go for that.  Brian and I are not energy drink people, and we definitely aren't going to let the kids be.  Protein shakes, yes, Red Bull, no.

Parker is, well, Parker.  We are having some struggles with him.  Though I'm hearing no different from any 13 year old boy.  Just very frustrating.  I am constantly having to ask him to do his homework, practice his saxophone, shower, brush his teeth, change his clothes, only to find out he hadn't been.  He's very withdrawn, and not extremely social, and that concerns us.  We can't seem to find that one thing that he loves, though not without lack of offering him sports and extracurricular activities, etc.  Brian is putting his new golf mat down in the basement this week on his days off and they are going to work on his swing and get him ready for spring.  He did tell me tonight he wants to go out for track this spring at school, and I'm really excited to hear him express interest in something! He said he's not going to try to run the fast races, but the distance ones-yeah!!   He asked if he could go to the gym with Brian and I this week and run on the treadmill-definitely buddy!  We will go tomorrow-  Another reason to make myself go do cardio! 

Ethan is doing well!  I say that very guarded, as I sure thought we were headed to the ER the Sunday before NYE.  He woke up coughing, with a fever, and was very lethargic all day.  I was sure he had aspirated some of his own drool, as the drooling is out of control.  We are weaning his Robinul-for drooling-and I'm not sure it's a good idea.  He loves to put his right hand, and I mean whole hand, in his mouth, and I swear he touches his tonsils.  With that comes all the drool.  We don't necessarily want to stop him from putting his hand in his mouth-as he's never been interested in doing that before, but he ends up a complete wet mess, and getting choked up on his own secretions.  Thanks to a nurse friend and a very nice produce guy-a peeled white onion in his room has kept all his symptoms from getting any worse-and he's even gotten better.  Crazy, I know, but with him we will try anything.  We are currently researching getting him some type of high chair, feeding chair for him this year while we still have a durable medical equipment budget allowance on our insurance.  His wheelchair doesn't come in the house, his stroller isn't tall enough for him to sit with us at the table, and I'm not sure we can find a typical high chair to fit him.  He's long and skinny, but really needs either a five-point harness, or a chair that slightly leans back as he still has issues with trunk control and can't really sit unassisted.  I'm afraid a little lap strap won't hold him.  Any suggestions from my toddler and special needs parents???  He's 38lbs and 3 1/2 feet long.

I have had to reschedule my expander reconstruction surgery that I had set for the 25th of this month.  I won't have enough FMLA time to be off the needed 3 weeks, and I can't afford to not be guaranteed my job when I come back.  It is now scheduled for April 12th, that will give me 2 weeks of last year's FMLA, and the 28th of April my new year, and new 12 weeks starts over.  Plus, it gives me time to save some paid time off!  I hated to have to do it, but it's ok.  I will live 3 more months without boobs, I've done it for 9 so far.  Kind of re-thinking the DIEP I posted about previously.  Just simply may not have enough time to take off for it, and if so, some nice, big, perky silicone implants will do just fine.  On this new time table, it puts me trading out expanders for implants anytime between October and December, depending on how well the fills go.  Looks like I'm in for at least 2 more surgeries this year. 
There are some other issues going on, nothing major, but hoping not to have to have a third surgery on the schedule this year.   It's looking like they may want to take out my remaining left ovary, there are arguments on both sides of this debate. 

Looking forward to donating some time to local charitable organizations this year, as we did less than we would have liked to last year.  Hailey and Parker want to go back to Harvester's, so we will be setting up a date for that and looking for other willing volunteers! 

Loving having the kids back in school and the holidays over-though not that it looks like Christmas is over at our house.  Guess I need to take down the deco this weekend-any volunteers????

I resolve this year to do quicker, less wordy updates more often. 
And figure out how to post pics from my ipad.
Promise.