Boy Trying To Collect One Thousand Tubes Of Scented Lip Balm

 

Oakley is just 5 years old and he loves giving back.  We started our give back opportunities through his page, “Team Oakley” which is a Facebook page dedicated to awareness of his medical condition, Prune Belly Syndrome.

We typically held an annual fun band-aid drive because what kid doesn’t want a cool band-aid after a poke?  We have collected over a thousand boxes over the years to give to Helen Devos Children’s hospital.

 

 

This time around, we decided to do something a little different.

 

While sitting down one day, I asked Oakley what sort of things made his stay better when he had surgery; what made it easier.  That is when he reminded me about the smelly lipstick that he put inside of his anesthesia mask.

 

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That is when we decided we were going to collect scented & flavored chapstick and lip balm.  We thought that this would be a great way to give back and a fun way to get other’s involved to help since there are so many different colors, flavors and scents to choose from.

Why lip balm?
What happens is a member of the child life team will walk into your holding room, the area where you wait to go back to surgery.  They will bring in about five different scents of lip balm for your child to choose from.  Once the child picks their favorite, they pull the top off of the lip balm and rub it on the inside of the anesthesia mask.  This  makes the process of going to sleep a bit easier as it hides some of the smell that the anesthesia gas gives off which isn’t pleasant.

If you look at it as each tube of lip balm is for one child having a procedure or surgery under general anesthesia, it really makes you want to push the envelope and collect as many as possible.

So we went all out and set the goal to One Thousand tubes!

 

 

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“I’m helping the kids feel better.”

As Oakley get’s older, he has really taken an interest in helping other kids who have to go through tough and painful procedures.  He has a huge heart and is a kind soul, he is always worried about other’s and how they are feeling.

We have written to Lipsmacker, a well known novelty lip balm company, and we were enlightened to hear back from them that they are going to be sending Oakley a donation for his campaign.

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We also have a few businesses that have really stepped up and are holding collection drives as well!

While no parent wants their child to have a life threatening illness or disease, it has definitely brought out some positives in our lives such as helping others.  The kids are always thinking of new ways and new ideas to bring to the table for our next campaign.

Oakley’s next surgery will take place on February 23, 2016.  We plan on delivering the Chapstick to Helen Devos Children’s Hospital on February 22, 2016.

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What Oakley has collected so far!

 

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The generous donation that Lip Smacker sent Oakley

To help Oakley with his lip balm drive, you can contact Oakley’s Mother at sarahsavickas@yahoo.com

You can mail your Chapstick or Lip Balm to:
Team Oakley
8531 W Tyler Rd
Sumner, MI 48889

There has also been an Amazon Wishlist created.  You can select from our list and it will ship directly to us; so easy!
AMAZON WISHLIST

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Leland looks like your typical 5 year old little boy, but he is dying

My son was born with a rare and life threatening syndrome called Prune Belly.  When he was 12 days old, we were told that one day he would need a kidney transplant.  Since hearing those words five years ago, I have crossed paths with many people I normally wouldn’t have.

I know Mother’s of children on dialysis, I know Mother’s whose children have received a kidney transplant, and I know Mother’s who have had to bury their child because they died while they were awaiting a life saving kidney transplant.

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I don’t want 5 year old Leland to be one of those 21, but the reality is that he is going to die if we don’t find him a match for a kidney soon.

Leland has the same syndrome as my child and he is the same age.  I cannot fathom burying my child.  I can’t.  

There is something about Leland’s story that is a bit different –
His options are slim to none as far as dialysis goes.  He is down to his last and only option, a line in his leg to cleanse his blood, keeping him alive.  They cannot place a line anywhere else in his little body due to other complications such as scar tissue build up.

Look at your own child and try to imagine this as your own little boy.  A boy who smiles regardless of what he goes through, who loves Cowboys and is looking forward to Christmas.

What if I told you he might not make it to Christmas?

This is where you come in.  This is where we need you.  Yes, you.

You can donate your kidney and still life an excellent quality of life.

The transplant and testing is covered by the recipients insurance or in some cases the Transplant Centers Organ Acquisition Fund or OAF.  There is also financial assistance for lodging, meals and travel expenses available to those who qualify.

There are several tests you will need to undergo including, but not limited to:

  • Bloodwork
  • Ultrasound
  • EKG
  • Kidney Ultrasound
  • More Bloodwork

To see if you are the one that can save Leland’s life, please visit the University Transplant Center’s Breeze Transplant Online Health History Questionnaire to get started.

The faster the donor gets their testing done, the faster Leland can get the kidney he needs.

CLICK HERE to start the process

Once you are there, you will see a screen that looks like this.  Due to the fact that 5 year old Leland is under the state’s care, his last name cannot be released.  But – just type in the word ‘news’ for the last name, this will get you to the next screen to continue the survey.  They also cannot release other identifying information such as his blood type, so we need to get as many people as possible to fill this form out.

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You have the potential to be Leland’s hero.

If you are not a match for Leland, you could still save the life of one of the people who are added to the national transplant waiting list every 10 minutes.

Please share this posting with everyone you know get the word out about this amazing little boy.

Don’t let those articles and posts about Lamar Odom deter you from wanting to be an organ donor.

I am not typically one who follows the tabloids but this post that has been shared over 25,000 times has caught my attention regarding organ donation. It is written by the sister of a woman who is in need of a life saving kidney transplant; and it is full of misconception.

Don’t jump on that bandwagon just yet.

Source: Facebook

We can agree on one thing, I don’t know what Lamar Odom has been through in his life and I don’t know what drug addiction is like.

Trust me, I get it.  You are upset and enraged and so are many of the thousands of other family members and people diagnosed with a disease requiring an organ transplant as a treatment.

That’s right, kidney transplantation is not a cure, it is a treatment.

I can ensure you that just because Mr. Odom has assets beyond the typical candidate for organ transplantation, he will not be moving up the list due to his financial status or fame.  The list doesn’t work like that.

The list doesn’t care what your net worth is or who you know.

The list is managed by UNOS, the United Network for Organ Sharing who ensure that the gifts of organs go to those who are best matched.

Best matched doesn’t mean because you are famous.

Best matched means blood type, tissue type, medical urgency, time on the waiting list and origin.

You also have to meet strict requirements to even be a candidate for an organ transplant.

If Mr. Odom does indeed end up needing a life saving kidney transplant, there is no guarantee that he will be an eligible candidate.  He will have to endure the same testing as everyone else does to see if they are eligible and one of the many criteria is that you cannot have risky lifestyle practices.  You have to prove that you are worthy of receiving an organ transplant and that you will take care of it.

If he is approved, he will have to either wait on the list just like any other patient, or secure a living donor.The odds of him securing a living donor are considerably higher for him due to the amount of media exposure and fan base he has.

Before anyone starts thinking that I have no room to talk or that I would change my mind if I were in another position, I can relate because my 5 year old son was also born with kidney disease.  He has endured so many surgeries, procedures, lab draws and imaging that I have honestly lost count.  He always has a smile on his face and always lives life to the fullest.  He has also had to suffer through so much through no fault of his own.

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One day he will be on that list and I have no worries that the list will be ran the way it is intended to and that a person with will not jump above him on that list due to their financial status or fame.

All in all, even just the talk about Mr. Odom’s possible need for a kidney transplant has brought much needed awareness for organ donation.  He has already received many offers from people who would be willing to donate to him.

The only thing I am hoping is that he takes this experience, learns from it and betters himself.

I also hope that one of the things he learns from this life changing ordeal is that he has a voice he can use to advocate for organ donation.

Because every day there are 4,100 transplant candidates added to that list and 18 die each day while waiting.

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 I am so glad that this woman’s sister is finally receiving multiple offers for a kidney donor.  But at the same time it makes me sad that it had to get this far just for people to step up to donate.

While I believe her intentions were good, by posting erroneous information, this could actually backfire and deter people from wanting to donate by thinking that kidneys are just given to those who are not going to take care of them.

Click here to register to become an organ donor

What I Want You to Understand About Being the Mother to a Chronically Ill Child

While I was pregnant, we knew that our son would would have a multitude of health issues.  It wasn’t until he was born, that my now 5 year old son, was diagnosed with Prune Belly Syndrome.  Prune Belly is a rare and life threatening syndrome effecting just 1 in 40,000 births.  There is no cure at this time but there are treatments available to help such as catheterization, medication and kidney transplantation.

It isn’t easy

God, it isn’t easy.

Everyone tells us how strong we are, but we really aren’t that strong

We are Mom’s.  A Mom, just like you.  We aren’t superheroes, we don’t wear capes.  We just do what any Mom would do which is taking care of our child.  Trust me, you would do the same thing.  You don’t really have a choice, you just dive in and get it done.

We are tired, restless, and sometimes lonely

We get our children to bed at night and we stay up late.  We stay up late scouring the internet for new studies and information about treatments for our children.  We hop onto our online support groups and answer questions of others and ask for help ourselves.  We stay up late doing those endless loads of laundry and dishes that we couldn’t get to earlier in the day because we were busy.  Not busy doing fun activities with our children, but busy on the phone with insurance companies, doctors offices and medical supply companies.  Busy going to and from appointments, procedures and lab draws.

Real friends are hard to come by

Coffee at Starbucks?  Dinner at 7?  Play date at 11?  Not so much anymore.  We try. We really do try to get out and socialize but sometimes we just can’t swing it.  Trust me when I say this- it sounds so good when we say we will be there!  But by the time we juggle homework from the other kids, tackle a load of laundry, and do night time medicines, it’s already 9 p.m.  To those friends who have stuck by our side regardless if we have had to break plans (again and again) thank you!

Stop feeling sorry for us

We don’t need anyone to feel sorry for us.  Yes, it sucks that my child has to have surgery.  Yes, it is heartbreaking that they are sick and in the hospital.  But please, don’t feel sorry for us.  Don’t pity us.  When we talk to  you, we just want you to act normal and talk about normal things.  It is our escape from our heartache.  A little bit of normalcy does wonders!

When we say we don’t need anything, we’re lying

We don’t want to burden anyone with our own issues.  So, when you ask if we need anything and you hear that generic “No, I’m fine” or “No, we’re okay”, take it with a grain of salt.  We aren’t going to speak up and say, “Hey!  I could really use some company” or “I could really use some help”.  If we are in the hospital, bring up coffee or lunch.  Force us to get out of the house and don’t let us make any more excuses.  Sometimes we need that extra nudge to just get up and get out even if it is just for a walk or to sit outside and chat.  Even just being there allows us to breathe a sigh of relief that somebody really does care.

Ask us before posting to social media

A lot of Mom’s have blogs or facebook pages that are public.  These are free game to share from and we encourage you to hit the share button or copy and paste that link.  But please, and I am begging you, do not log into your facebook account or other means of social media and start posting pictures of our child(ren) with your own versions of what is going on. Sometimes we tell you things in confidence and are not ready to make this information public.  We will always appreciate the prayers and well wishes, but please use a generic statement and don’t name names until you check with us first that it is okay.  We might be waiting for an official diagnosis from a doctor or test or we might just not be ready to announce our news with everyone just yet.

We are smiling, but our hearts are aching

Some days it takes all we have to put on a smile.  Our child’s illness is emotionally, physically, spiritually and financially draining.  Our child deserves the best and we don’t want them to know that our hearts are really aching so we make sure to put a smile on our faces for them even when we feel like crying because some days are so hard and we feel defeated.

We need you to just be there

We can go through a ton of emotions in one day.  Don’t take offense if we don’t return that phone call or text right away.  We’ve seen it and we love that you are thinking about us.  I promise we will get back with you once we have a minute.  It might not seem like you just being there is a big deal, but it is a huge deal.  Knowing we have somebody in our corner makes us feel 110% more confident.

We are nurse’s without the degree

I change dressings on my child’s raw and bleeding skin.  I administer medicines; multiple times a day.  I wipe away tears and soothe the soul.  I cleanup vomit and stand vigilant through the night monitoring a fever.  I know how to take a blood pressure, insert a catheter and administer a feeding…through a tube.  I may not have a nursing degree, but I have learned so much from hands on experience I could pass for one.

Our child can go 0 to 100 in a matter of hours

We can wake up and go from having a great morning to spending the evening in the emergency room.  Oh, and we are ready for that.  We are always on our toes and ready to expect the unexpected.

We wouldn’t give it up for the world

To the outsider looking in, this can all seem so overwhelming.  Honestly, it can be overwhelming but the love we have for our child is not measurable and the smile we see on our child’s face is indescribable.  This is the life of a Mother with a chronically ill child, and this is our normal.  We get paid in smiles, does it get much better than that?

momoakgala

Sarah is a stay at home mom and is new to the blogging world. When she’s not playing referee between her five children, she is advocating for children with illness and disabilities to create much needed awareness. You can find her sharing her son’s medical journey on Facebook or read her latest thoughts by visiting her blog medicine & smiles.