Thursday, August 2, 2018

6 Ways To Nurture Your Marriage While You Are Coping With LM

Parents of special needs children have an 80% divorce rate. 

Yes, you read that right...80%. 

The constant stress/PTSD, hospital stays, outstanding medical bills and lack of help from family and friends can leave a couple wondering if life would be easier apart. 

Parents coping with PTSD may have a very difficult time leaving their child for a date night. 

What if she stops breathing? 

What if the babysitter doesn't remember how to turn on her apnea monitor?

And we aren't talking about normal parental worries, we are talking about full-blown panic attacks in the middle of the movie theater. Sadly, almost all parents of moderate to severe airway babies will experience some form of PTSD.

Then there are the outstanding medical bills and sky-high insurance premiums that leave little to no money at the end of the month for dinner and some drinks. 

So what does a couple do?

We asked our parents in Parent Support at Coping With LM what did they do to nurture their marriage while they are coping with LM and here is what they said:

1. Movie Night-In
Put the kids to bed, turn on the apnea monitor/oxygen and get comfy on the couch together! 
Comcast OnDemand has many free movies. Redbox, Netflix, Hulu, Amazon Video and the local library are other good options. 
Movie recommendation: Fireproof 

2. Cook Together 
Scroll through Pinterest and find a new recipe, you both love. 
Maybe some chocolate fondue and fresh strawberries are exactly what the doctor ordered. 

3. In-House Babysitting
Who said you have to LEAVE the house when the babysitter comes? 
Ask a grandparent, sister, brother or home nurse to watch your Pint-Sized Powerhouse in the living room while you and your spouse watch a movie in your bedroom, sit outside by the firepit, or tackle that to-do list together! 
It's about spending time together, not how far away you are from your child. 

4. Go On A Hike
Put the kids in the stroller or baby carrier and go for a hike together. 
You will be surprised what a little sun and fresh air can do for you both! 

5. Find Your Village
Having a hard time finding someone who will watch your Pint-Sized Powerhouse? 
Find another Malacia family in your area and swap babysitting nights. 

6. Read A Book Together
Book recommendation: The 5 Love Languages.*

*Please use AmazonSmile: Coping With Laryngomalacia when making purchases on Amazon. Thank you so much for your support!  

Sunday, March 4, 2018

What You Should Know Before Your Child Has Surgery

Your baby's laryngomalacia is more than 'just some noisy breathing' and now he/she is headed into the OR. 

Am I making the right choice? 

Will my baby be in pain? 

How am I going to hand my baby over to the surgeon? 

These thoughts consume you as you try to prepare for what lays ahead. 

In an effort to continue providing support for our families, we have compiled a list of ten things you should know before your child has surgery.

1. Get A Second Opinion
About 5% of all babies with laryngomalacia will need a supraglottoplasty. Before signing any pre-op papers, get a second opinion from an ENT who specializes in laryngomalacia AND supraglottoplasy. Find a recommended ENT here.

2. Understand The Risks And Benefits Of The Surgery
Surgical intervention is warranted if a baby has severe laryngomalacia with recurrent apneic events, difficulty with feeding, failure to thrive and recurrent cyanosis and respiratory distress. Some risks are complications from anesthesia, aspiration, and infection.

"It was the scariest thing I have ever gone through but I would do it all again in a heartbeat if I had to!"- Jenny

3. Know What Recovery Could Be Like
Children are transferred to PICU once out of recovery. Recovery normally consists of oxygen via nasal cannula, pain medication (Tylenol to Morphine for severe pain) and IV fluids. Some children will need to be intubated for 24-48 hours due to swelling in the airway. Once discharged, pain management and infection control are the top priorities. 

"Prepare to see your infant with lots of monitors and tubes on and in them."- Tarah

Baby intubated post supraglottoplasty.

"She was on oxygen and intubated after her supraglottoplasty. It’s scary, but it will be worth it."- Kelly

4. If In The USA, Know Your Health Insurance Hospitalization Policy
Call your insurance company and ask about any deductibles, copays, and deductibles. Also, ask what is their policy of your child receives care from an out-of-network doctor while in the hospital.

5. Take A Tour Of The Hospital

Pay attention to where the cafeteria is and it's hours. Also, ask about getting a parking pass.

6. Know The Hospital's PICU Visitation Policy
Most PICU's only allow one parent to stay overnight and only two visitors in the room at a time. Vistors gifts and flowers are usually discouraged. 

Baby and #LuTheLamb in the hospital.

7. Know What To Bring To The Hospital
Read this list to know what to bring to the hospital.

"Another mom told me to bring Advil, I got a massive headache! Surgery was delayed until 3:00PM"- Kathleen

8. Know You Are Supported And Not Alone
Connect with over 2,500 parents here.
Let family and friends know how they can help here.

"Stay strong, you will get through it"- Maria

LM parents at a Malacia Meet-Up in New Jersey. January 20, 2018

"You’ve been so strong and fighting for your child for so long and now your baby is getting the help needed. "- Karen

9. Apply Your Child For A Coping With LM Care Package 
Each care package includes #LuTheLamb, a handmade blanket, hospital gown and other goodies to help comfort your little one. Apply here.

Handmade blankets are included in CWL's care packages

10. Know Surgery Does Not Cure LM
In otherwise healthy babies, most of the time a single supraglottoplasty will improve the airway obstruction caused by laryngomalacia and no further surgery will be needed. Supraglottoplasty has been shown to have over a 90% success rate in healthy children with laryngomalacia. There are times, however, when a second surgery may be needed if your baby is still having symptoms of severe laryngomalacia such as recurrent apneic events, difficulty with feeding or failure to thrive. Studies have shown that this is more common in neurologically delayed children. Up to 70% of children with neurological delay and laryngomalacia may require a revision supraglottoplasty.

Share and print here.

Tuesday, January 16, 2018

What To Pack When Your Baby Goes To The Hospital

As many special needs parents know, hospital stays can happen in the blink of an eye or they can be booked for months in advance. Regardless of the urgency of the stay, it's a good idea to have a detailed list of items to pack. From obvious items like a toothbrush and iPhone charger to some not so obvious, an electric hot water settle to make coffee/tea with. 

1. Favorite blanket/lovie
2. Extra pacifiers 
3. Bottles and bottle brush
4. Baby formula
5. Snap or two piece pajamas
6. Socks
7. Small toys and books
8. Small crafts for older children
9. DVDs
10. Bouncy seat
11. Baby carrier
12. White noise sound machine
13. Breast pump and supplies
14. List of current medications
15. Fingernail clippers
16. Baby oil / coconut oil to help remove bandage glue
17. Soap, towel and comb
18. Unscented baby lotion
19. #LuTheLamb
20. Baby food and nonperishable snacks, including allergy friendly options

1. iPhone, iPad and laptop chargers
2. Socks and slippers
3. Lip balm
4. Pillow and blanket
5. Cash for vending machine
6. Book
7. DVDs
8. Adult coloring book
9. Reusable coffee/tea cup
10. Advil / Tylenol
11. Women's feminine products
12. Extra clothing including a sweatshirt and pajamas
13. Small dish soap and sponge
14. Notebook and pen
15. Hand sanitizer and sanitizing wipes
16. Shampoo, conditioner, body wash, wash cloth and a bath towel
17. Hair brush, hair ties and make-up
18. Heating pad
19. Batteries
20. Essential oils and diffuser
21. Current project: crochet, knitting etc.
22. Ear plugs and a night mask
23. Vitamins and prescription medication
24. Nonperishable snacks including allergy friendly options

Tuesday, January 9, 2018

A Year In Review: 2017

A Year In Review:
What a wonderful year it has been at Coping With LM! 

Through our Breathe Easy Care Package Program, 151 babies with life threatening laryngomalacia received a care package for their upcoming procedures; making 2017 CWL's most impactful year yet! 

We gave three $100.00 Pint-Sized Powerhouse Grants to three very deserving warriors. 

Thanks to our friends at Chibebe Snuggle Pod USA, 12 babies with laryngomalacia received Snuggle Pods, free of charge and two babies in Australia received Snuggle Pods. 

We continued our partnership with Gelmix Thickener, launched our Amazon Wishlist and joined eBay For Charity. We also continued our fundraising efforts with Amazon Smile, Bravelets and Jamberry.

We graciously accepted donations from Heaven's Healing Hats, West Chester University Honors College, 02 Kid Lids, Fairlington United Methodist Women's Church, Benevity, Wells Fargo, Virgin Pulse Inc:, Network For Good, LuLaRoe, The Cordish Family Foundation, Fidelity Charitable Fund, Gracie's Gowns, Eliana's Collection Nail Polish, 
and The #DoingItForKeiley Project.

On Sunday, June 11th we created a Wave Of Light in memory of Alexander Joseph Andrade Jorgenson who passed away on May 31, 2017 from respiratory failure (Cardiac Arrest) due to complications of tracheomalacia.  #CWLLight4Alex 

We were humbled by the outpouring support from our donors. Many of you hosted Care Package Drives; your support and passion for our cause was not only heartwarming, but greatly appreciated. 

On July 10, 2017 we all stood together and painted our nails light blue for LM.

On August 6, 2017 CWL Founder & President Stephanie Hueston met with other local families for a New Jersey Malacia Meet-Up.

Also in August, we welcomed volunteer Tarah  Barreras to the CWL Team! 
Tarah's commitment and passion for CWL has been amazing; we are so happy to have her! 

CWL Founder & President Stephanie Hueston shared why CWL asks for handmade blankets, 10 reasons why you shouldn't use a store bought monitor on a baby with LMand how friends can help someone who is coping with laryngomalacia on the Coping With LM Blog.

We witnessed how in times of crisis
families rally together and pour their love into each other. 

CWL's mission of providing support and strength expanded in 2017 with the launch of the World Leader Program. The purpose of the World Leader Program is so newly diagnosed families can connect with "seasoned" parents in their area. 

#LuTheLamb traveled the world in 2017, 

helping his Pint-Sized Powerhouses' breathe easy! 
He also attended the Solar Eclipse! 

With your support, we raised $1,350.54 with our t-shirt fundraiser's 
and over $1,200.00 thanks to your Facebook Fundraisers! 

Finally, we humbly received the 2017 Top-Rated Nonprofit Award from GreatNonprofits and launched our first e-Book, 'When It's More Than Noisy Breathing' thanks to the help and support from Dr. Prasad John Thottam D.O., FAAP Director of Beaumont Children's Hospital Pediatric Aerodigestive Center and Dr. Suzanne Forman D.O. Otolaryngologist & Plastic Surgeon.

As 2017 comes to a close, I can rest peacefully knowing that with your support Coping With Laryngomalacia, Inc. and #LuTheLamb have fulfilled their missions. Families around the world are supported, strengthened and educated.  Thank you for giving, volunteering, supporting and loving CWL... it is because of YOU that we were able to accomplish what we have in 2017. 

May you always stay brave,
-Stephanie Hueston, CWL Founder & President