Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts

Wednesday, February 28, 2018

2018 Christmas Toy Drive

I know its only February (March tomorrow) but I've been thinking about this years toy drive since I dropped last years off at Valley Children's Hospital and I'm making some changes. First I want to thank everyone who donated to last years toy drive. Thank you for helping make Christmas great for the sick kids stuck behind the glass at Children's...

(My daughter Lanie posing in front of the tree at Valley Children's when we dropped off 2017's donations.)


The changes I'm making are simple and sure to make this year's drive reach more kids. Every year I'll pick 1 kind of item that I'll be collecting. This way it's easy to remember what we're in need of, and we can reach more kids than ever. There are also guidelines we have to follow given to us by the hospital.

What you need to  know for 2018:

1) This year we will be collecting stuffed animals. Because of their softness and huggableness they make a great gift for sick kids. They provide lots of comfort.

2) All stuffed animals must be new. They cannot be used (even gently used). This is a guideline from the hospital. They can't risk exposing kids to any germs, viruses or anything else. Anything donated to us that is used I will have no choice but to donate to a local thrift store or to toss.

3) After holidays is the best time to pick up stuffed animals for a fraction of the cost. Easter is coming up and you can get a lot of stuffed animals on clearance getting "more bang for your buck".

4) All donations need to get to me by the 10th of December. This gives me 15 days to inventory everything and a 15 day window to set up delivery with the hospital.

5) You can contact me on our Facebook Page Shooting for Liam or shootingforliam@yahoo.com

6) I'll have a graphic made for you to share soon. Please share our blog post and Facebook post.






Sunday, February 19, 2017

Reherniation Signs and Symptoms

Having a child with Congenital Diaphragmatic Hernia can be scary for parents, even after the initial repair surgery and NICU stay. Truth is that when our babies graduate from the NICU, our journey isn't over. Just because they repaired the hernia, doesn't mean it can't happen again. It's better to know the signs and symptoms in advance so you can recognize them in your child.

Signs and Symptoms of reherniation may include:
*Difficulty breathing
*Fast breathing
*Fast heart rate
*Cyanosis (blue skin color)
*Feeling sick
*Throwing up frequently, including green bile
*Refusal to eat
*Lethargic
*Fever
*Black tar like stool
*Retching
*Pain

Keep in mind that each child is different and may or may not have any of the above listed symptoms. The severity of the symptoms also depends on the severity of the herniation. Always seek medical attention if your concerned your CDHer may have herniated. Contact your CDH specialist team, pediatrician or take them to ER for X-rays. Always follow up with your pediatrician.

41% of hernia's that were repaired using a patch will require surgery to replace the patch within the first 3 years. As your child grows, the patch will have to be replaced with a bigger one since it doesn't grow with your child. Your child with a patch repair may or may not have any of the symptoms listed above.


Severe Congenital Diaphragmatic Hernia


Congenital Diaphragmatic Hernia Repair


Congenital Diaphragmatic Hernia Patch Repair





Thursday, September 22, 2016

Kimberlee


Last week,
I picked up this donation of toys from my friend Diana.
Diana donated this to our care packages in memory of her daughter,
Kimberlee.


Kimberlee was diagnosed with Acute Myeloid Leukemia
on November 8th of 2009.
Kimberlee was 6 months pregnant at the time.
She had chemo twice before she gave birth to a healthy baby.
Kimberlee underwent a bone marrow transplant on May 25th 2010.
On August 31st 2010,
they were told that the Leukemia had returned,
with a vengeance.
The doctors said there was nothing more they could do,
and Kimberlee was given just 6 months left to live.
So they returned home to live out what time she had left.
On September 27th 2010,
Kimberlee lost her fight against Acute Myeloid Leukemia.

Diana donated this precious gift of toys for the kids at Children's Hospital,
in memory of her precious daughter Kimberlee.




Acute Myeloid Leukemia is rare with less than 200,000 US cases per year.
It's a type of cancer of the blood and bone marrow with excess immature white blood cells.
AML progresses rapidly,
with myeloid cells interfering with the production of normal white blood cells,
red blood cells, and platelets.


Friday, September 9, 2016

Christmas Drive

This December marks the one year anniversary of when our sweet little lamb became an angel. We are doing a drive in his memory for Valley Children's Hospital.


We want to deliver these packages to the hospital around December 15th and are asking for the following items:

*backpacks or tote bags
*books (for all ages)
*stuffed animals
*blankets (baby-teen)
*small toys
*journals or notebooks
*coloring books or activity books
*crayons, color pencils and pens
*toiletries (NICU parents)
*tethers and baby toys
*baby socks and hats
*on the go snacks (granola bars, protein bars, etc)

These are just some ideas of the kind of things we'd like to include in our packages. We are putting together care packages for newborn to age 19 as well as parents in the NICU. Often times parents are too worried for their babies that they forget to eat themselves or even pack the essentials like a toothbrush or hairbrush. Adult coloring books and puzzle books are a great thing for NICU parents as well because often times there are long stretches of time when they cannot hold their baby so they just sit at their side These items would give them a much needed break as well as relieve some stress. 

We are also having an online Jewelry in Candles party to raise money to purchase items for these care packages. This party will be active until 10/09/2016 and 100% of the commission is going to buying more items for children's hospital. Click here to shop our Jewelry in Candles party

If you'd like to donate items, please contact us on our Facebook page or email us at shootingforliam@yahoo.com


A care package we made for a family who was in the NICU at Children's hospital August 2016.

Our donation to Children's in memory of Liam in April 2016.

Just some of the items we donated in April 2016.

October 2012, our tethers for teethies drive. 





Wednesday, May 29, 2013

Chronic Lung Disease: Its Not Just For The Elderly

When you hear the words Chronic Lung Disease, most people think older people walking around with nasal canulas dragging oxygen tanks with them. Very few people would ever imagine a baby with Chronic Lung Disease. So you could imagine how heart broken I was when Liam was diagnosed with CLD. Come to find out Chronic Lung Disease is just another way of saying long term respitory problems. And although its used mostly for premature babies and elderly, others can get it too.It is also known as bronchopulmonary dysplasia (BPD).

What causes chronic lung disease?

CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing. The lungs of premature babies are fragile and are easily damaged. With injury, the tissues inside the lungs become inflamed and can break down causing scarring. This scarring can result in difficulty breathing and increased oxygen needs. Some of the causes of lung injury include the following:

  • prematurity - the lungs, especially the air sacs, are not fully developed
  • low amounts of surfactant (a substance in the lungs that helps keep the tiny air sacs open)
  • oxygen use (high concentrations of oxygen can damage the cells of the lungs)
  • mechanical ventilation - the pressure of air from breathing machines, suctioning of the airways, use of an endotracheal tube (ET tube - a tube placed in the trachea and connected to a breathing machine)

Who is affected by chronic lung disease?

Chronic lung disease can develop in premature babies who have had mechanical ventilation (breathing machine). Risk factors for developing CLD include:

  • birth at less than 30 weeks gestation
  • birth weight less than 1,000 (less than 2 pounds) to 1,500 grams (3 pounds 5 ounces)
  • hyaline membrane disease - lung disease of prematurity due to lack of surfactant that does not show the usual improvement by the third or fourth day.
  • pulmonary interstitial emphysema (PIE) - a problem in which air leaks out of the airways into the spaces between the small air sacs of the lungs.
  • patent ductus arteriosus (PDA) - a connection between the blood vessels of the heart and lungs that does not close as it should after birth.
  • premature Caucasian, male babies are at greater risk for developing BPD
  • maternal womb infection (chorioamnionitis)
  • a family history of asthma
  • breathing problems at birth
  • develop an infection during or shortly after birth

What are the symptoms of chronic lung disease?

The following are the most common symptoms of CLD. However, each baby may experience different symptoms of the condition. Symptoms may include:

  • respiratory distress (rapid breathing, flaring of the nostrils, grunting, chest retractions)
  • continued need for mechanical ventilation or oxygen after a premature baby reaches 36 weeks gestation
Symptoms of CLD may resemble other conditions or medical problems. Always consult your baby's physician for a diagnosis.

How is chronic lung disease diagnosed?

Because CLD is a chronic disease and appears gradually, physicians must look at several factors. It is often diagnosed when a premature baby with respiratory problems continues to need additional oxygen after reaching 28 days old. Chest x-rays compared with previous x-rays may show changes in the appearance of the lungs. The x-ray of lungs with CLD often have a bubbly, sponge-like appearance. X-rays are diagnostic tests which use invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.

Blood tests (test used to determine if enough oxygen is in the blood) and an echocardiography (test that use sound waves to create images of the heart to rule out defects) are also used to confirm causes of bronchopulmonary dysplasia.

Treatment of chronic lung disease:

Specific treatment for CLD will be determined by your baby's physician based on:

  • your baby's gestational age, overall health, and medical history
  • extent of the disease
  • your baby's tolerance for specific medications, procedures, or therapies
  • expectations for the course of the disease
  • your opinion or preference
Treatment of CLD may include:

  • extra oxygen (to make up for the decreased breathing ability of the damaged lungs) and a pulse oximetry to measure how much oxygen is in the blood
  • mechanical ventilation with gradual weaning as the baby's lungs grow and can do more of the work of breathing
  • surfactant replacement
  • medications such as:
    • bronchodilators (to help open the airways)
    • steroids (to help reduce inflammation)
    • diuretics (to help reduce excess fluid in the lungs)
    • antibiotics (to fight an infection)
  • intravenous fluids and nutrition (to help the baby and the lungs grow). It is important to monitor the fluid intake, because excess fluids can build up in the lungs and worsen the infant's breathing ability.
  • radiant warmers or incubators to keep the infant warm and decrease the risks of developing an infection
  • nutrition (to help the baby and the lungs grow)
  • immunization against lung infection by respiratory syncytial virus (RSV) and influenza
CLD can be a long-term condition. Some babies with CLD require mechanical ventilators for several months. Some babies will continue to require oxygen when they go home from the hospital, but most can be weaned from oxygen by the end of their first year. Babies with CLD may be at increased risk for respiratory infection and may have to be re-hospitalized

(Information here was taken from http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/respire/cld.html and is for educational purposes. Always seek medical attention and advice when it comes to your health)


Sunday, February 10, 2013

Feeding Tube Awareness Week


It's feeding tube awareness week again. Time to spread awareness as well as facts. Time to break the stereotypes.

What do I hate most about the feeding tube?
The stares I get from strangers when I take my son out in public while on his feed. He's only 18 months now but soon he will be old enough to recognize the looks of strangers and those looks are going to make him feel different, out of place, and maybe even like a "freak". As it is I get glares, questioning looks, and looks of distaste from strangers who see Liam on a feeding tube. No child, or parent should have to deal with this stress.

Commonly asked questions:

Why does your child need a feeding tube?
The requirement of feeding tubes can vary from a medical condition, failure to thrive or many other reasons. In Liam's case he was Failure To Thrive (FTT). He couldn't eat enough orally to keep up with the additional calories his body required to grow and thrive. He would get tired halfway through a feeding, be breathing fast and just fall asleep on me. This is the case for many infants with or even without other medical conditions.

How long will your child be on a feeding tube?
This is a question I get asked a lot. Its hard to say how long a child will require a feeding tube as it depends on the child. Every child is different and has different needs. In Liam's case it started out with the doctors thinking he would only need his feeding tube for a year. Then the time line changed to possibly age 2 when he got his Gtube. Now that he has a GJtube and has a oral aversion to food theyre thinking he will need it 4 more years. When I get asked this question I simply respond "He will need the feeding tube until he is able to eat by mouth and gain weight without using the tube." There is no set timeline as to how long a child will need a feeding tube.

How many types of feeding tubes are there?
NG
G
NJ
ND
GJ
J
TPN
(Click here to find out more about these)

The Feeding Tube Awareness Foundation offers a lot of information about feeding tubes and spreading awareness.

Lets use this week and spread awareness any way we can. Post on Facebook or Tumblr. Tweet about it, post pics on instagram about spreading awareness. Examples of hashtags you can use: #feedingtubeawareness #i<3atubie #tubielove

If you have any tips on how to prevent feeding tubes from being pulled out, how to keep an active child near their pump or any other tips please share with us. You can post in comments, email us your tips or post on our Facebook page.


NG (Naso Gastric): Runs from the nose to the stomach