So, most of you do not know that I follow a lot of pages for children who have severe chronic illnesses, whether congenital or developed later on. I read them daily and they are a blessing to me in so many ways. But there is something in them lately that I need to clear up to all the mothers out there who are sharing their journeys:
IT IS NOT YOUR FAULT
Not all of you say this, but when things get worse, you guys seem to look at yourselves as the fault of these conditions. When really it isn't your fault. You carried these children in your bodies and kept them as safe as you possibly could until they came out in THEIR own time. You are strong whether you realize it or not and you stay by their sides until someone calls you to take a break and a rest and even then I know most of you end up right back next to your children within a few hours.
You have your moments when you break down, and who wouldn't but you pick yourselves back up after a cry and a sniffle (maybe a scream) and put a smile on your faces and be the best mommy and best support you can possibly be. You demand the best care, ask for second opinions, third opinions, and do everything you can to keep your children safe and as whole as they can be. And I know from the pictures you try to give them some form of normal.
You ladies are beautiful. It is NOT your fault. Never ever your fault. And I wanted to say this so you would know. So that you could have an unbiased stranger tell you that it truly isn't your fault. Your children if you were to ask would call you the best mother ever because you are there. And your presence makes them feel a little better even when things seem to be going wrong. There are other women and people who would have given up by now and you haven't, not truly.
So please be strong and know that you are are not at fault. And you are absolutely amazing.
Thursday, July 5, 2012
Tuesday, June 26, 2012
Lukas's Journey
Child of the week: Lukas
Lukas was born August 11, 2011. Five days after he was born, he was to the Stollery Children’s Hospital in Edmonton. His organs had already begun to shut down. After numerous tests they found out he had Hypoplastic Left Heart Syndrome or better known as HLHS. In HLHS, the left side of the heart – including the Aorta, Aortic Valve, Left Ventricle and the Mitral Valve are underdeveloped. This was not found in utero.
To fix this 3 surgeries are needed. The first, the Norwood Sano Procedure was done August 29th, 2011. The surgery performed by Dr. Rebekya was completed in about 4 1/2 hours, and was then followed by 3 attempts to take Lukas off the heart & lung bypass he was on during surgery. Lukas came out with a very long road ahead of him. Over the next 9 days he would then be on ECMO (form of life support) and from there it would lead him down a long road of complications.
Some of the post-operative complications that Lukas has had to overcome have included a hole in his right lung, a chronic collapsing left lung; poor kidney function resulting in needed dialysis, and lastly a stroke which unfortunately led to damage in the right cerebral hemisphere of his brain. This portion of the brain controls abilities such as moving, tasting, touching, hearing, seeing, behaving, and thinking. However there have been a number of Doctors and Nurses, commenting on how resilient babies are, and how their brains can re-map themselves.
Signs of this is already showing. He has hemiplegia which means that one full side of his body has paralysis. For him it is his left side. He seems to be recovering little by little. His family credits his progress to the Grace of God. I have watched this baby fight and prove over and over that you shouldn't believe every prognosis you hear.
You can visit his page at https://www.facebook.com/pages/Pray-For-Baby-Lukas/245854215452721
Send him some happy thoughts and prayers.
Tuesday, June 5, 2012
Liam Lyon: hypoplastic left heart syndrome
I would like to introduce you to Liam Lyon. And has his last name suggests he is ad mighty as any lion out there in the Sahara. And certainly cuter. :) He has been fighting since birth, beating all the odds placed in front of him. This baby who is only 15 months old has touched the hearts of not only his family and the hospital staff but a good 34, 819 people via Facebook who watch his progress online. And of course, I am one of them and he has touched my heart and I would like to share him with you, the world today about why he's so awesome.
He was born with HLHS or hypoplastic left heart syndrome and has already had a heart transplant. What this means is that the left side of his heart did not develop properly. This is a congenital defect or in other words developed at birth. This disease is rare and usually develops more in males than females. This condition makes it much harder for the heart to send enough blood throughout the body. He has 4 palliative surgeries, surgeries to repair some of the damage but that didn't work so he had a heart transplant on 7/25/11.
Liam was saved thanks to the generous giving of a child's heart from extremely selfless parents. While something difficult, it gives another child or adult depending on the situation, a new chance at life. And in some ways, I believe it is a chance for that person to help someone live on, even though they can't anymore.
He had some damage done to his iliac veins and his inferior vena cava so he has poor venous drainage from below his kidneys. He had poorly developed lung cartilage so his lungs are a little floppy. He is on meds that make him puffy but he also has problems with fluid retention because of the venous drainage. The doctors and family hope he can grow enough collateral circulation to handle that. He will be helped by the trach and the ventilator until his lungs grow up enough to stay more rigid. He will be on a feeding tube until he can eat on his own. And he will learn sign language and use a passy muir valve. He will be behind developmentally for a while - but not forever.
Here are some of the symptoms a newborn might experience. These symptoms usually occur within the first few hours of life but can take a week or two to show up:
Please visit his facebook page at I Love Liam Lyon
He was born with HLHS or hypoplastic left heart syndrome and has already had a heart transplant. What this means is that the left side of his heart did not develop properly. This is a congenital defect or in other words developed at birth. This disease is rare and usually develops more in males than females. This condition makes it much harder for the heart to send enough blood throughout the body. He has 4 palliative surgeries, surgeries to repair some of the damage but that didn't work so he had a heart transplant on 7/25/11.
Liam was saved thanks to the generous giving of a child's heart from extremely selfless parents. While something difficult, it gives another child or adult depending on the situation, a new chance at life. And in some ways, I believe it is a chance for that person to help someone live on, even though they can't anymore.
He had some damage done to his iliac veins and his inferior vena cava so he has poor venous drainage from below his kidneys. He had poorly developed lung cartilage so his lungs are a little floppy. He is on meds that make him puffy but he also has problems with fluid retention because of the venous drainage. The doctors and family hope he can grow enough collateral circulation to handle that. He will be helped by the trach and the ventilator until his lungs grow up enough to stay more rigid. He will be on a feeding tube until he can eat on his own. And he will learn sign language and use a passy muir valve. He will be behind developmentally for a while - but not forever.
Here are some of the symptoms a newborn might experience. These symptoms usually occur within the first few hours of life but can take a week or two to show up:
- poor or bluish skin color
- cold hands and feet
- lethargy
- poor pulse
- poor suckling and feeding
- pounding heart
- rapid breathing
- shortness of breath
Please visit his facebook page at I Love Liam Lyon
Wednesday, May 23, 2012
JDM: What it is and what it does
JDM is Juvenile
Dermatomyositis. Big word, I know. But basically this is an autoimmune
disease where the body's defense is attacking the body rather than
bacteria and viruses.JDM is unique in that is causes a skin rash and
muscle weakness caused by inflammation or swelling in blood vessels
under the skin and in the muscles called vasculitis.
The rash is reddish purple that can show up on the eyelids and cheeks and can be easily mistaken as allergies. This is fact, is the first sign of the disease. Unlike dermatomyositis in adults which can cause horrible sores, children get only the rash as their skin symptom.Some children do get weakness before the rash. They can get rashes also on the knees, feet, elbows, hands.
They still unfortunately get muscle weakness. It shows up in the proximal areas of the body such as the neck, shoulders, back and stomach. This causes them to have difficulty standing after sitting down, they fall a lot, have a weak voice at times. It also causes them to have contractures which means the joints shorten and stiffen up. They also complain of severe stomach aches. Fifty percent of children with this disease experience extreme pain.
Other symptoms sometimes experienced are calcinosis where lumps and sheets of calcium grow under the skin, tiredness and moodiness.
With this illness comes a long regimen of medications and specialists to look at each system of the body due to the side effects of the drugs as well as the illness itself. Its a hard battle for both the child and the parents. Now the question is:
Is there a cure?
No, not yet. There's not enough funding. Or even knowledge of this disease.
Check out these two pages of children with the illness currently:
https://www.facebook.com/AddiesAngels
https://www.facebook.com/FletchVsJdm
For more info please visit:
http://www.curejm.com/
http://www.arthritis.org/disease-center.php?disease_id=37
The rash is reddish purple that can show up on the eyelids and cheeks and can be easily mistaken as allergies. This is fact, is the first sign of the disease. Unlike dermatomyositis in adults which can cause horrible sores, children get only the rash as their skin symptom.Some children do get weakness before the rash. They can get rashes also on the knees, feet, elbows, hands.
They still unfortunately get muscle weakness. It shows up in the proximal areas of the body such as the neck, shoulders, back and stomach. This causes them to have difficulty standing after sitting down, they fall a lot, have a weak voice at times. It also causes them to have contractures which means the joints shorten and stiffen up. They also complain of severe stomach aches. Fifty percent of children with this disease experience extreme pain.
Other symptoms sometimes experienced are calcinosis where lumps and sheets of calcium grow under the skin, tiredness and moodiness.
With this illness comes a long regimen of medications and specialists to look at each system of the body due to the side effects of the drugs as well as the illness itself. Its a hard battle for both the child and the parents. Now the question is:
Is there a cure?
No, not yet. There's not enough funding. Or even knowledge of this disease.
Check out these two pages of children with the illness currently:
https://www.facebook.com/AddiesAngels
https://www.facebook.com/FletchVsJdm
For more info please visit:
http://www.curejm.com/
http://www.arthritis.org/disease-center.php?disease_id=37
Undifferentiated Soft Tissue Sarcoma: Payton's Story
I will be honest and say that I tried to find more info on this type of cancer but it's complicated because it's different for everyone.
So for this week's entry, I am going to use what I know of Payton, this
week's Child of the Week, as well as the Birthday girl 5/25 (So
excited!)
So here we go:
Payton Martinez was born last year on 5/25. When she was nearly 6 months old she was diagnosed with undifferentiated soft tissue sarcoma in her abdomen. This cancer is prevalent in that area. Two tumors one 13 cm and the other 6 cm were taking over her body. The 6 cm was also wrapping around her ovary.
They acted fast and she had a major abdominal surgery that left her in ICU for 4 days. The surgeons removed the 6cm tumor as well as her left ovary and fallopian tube but they couldn't completely remove the 13 cm tumor and were only able to remove about 90% of it.
Right now she is doing chemotherapy. It's pretty complicated since she does chemo once a week as an outpatient at Dell Children facility where she lives and then on the 3rd week of every month she gets admitted into the hospital for 3 different chemo drugs.
Recently in February of this year she had an MRI done and they found no cancer left in her body but she still has to do, as of now at least 8 more weeks of chemo. If she is still cancer free then no radiation therapy afterward. But if she does, then there will be radiation treatments.
I have to say, from reading her page and reading the progress on this baby. She is so positive and so happy. And her mom stays so positive. I cant even imagine how she does it, but she does. I know that I am believing in prayer that God will give Payton for her birthday and cancer free bill of health for the rest of her life.
Please take a look at this angel's page:
https://www.facebook.com/prayersforpreciouspayton
And send her some birthday wishes and some likes!
Thanks for reading!
So here we go:
Payton Martinez was born last year on 5/25. When she was nearly 6 months old she was diagnosed with undifferentiated soft tissue sarcoma in her abdomen. This cancer is prevalent in that area. Two tumors one 13 cm and the other 6 cm were taking over her body. The 6 cm was also wrapping around her ovary.
They acted fast and she had a major abdominal surgery that left her in ICU for 4 days. The surgeons removed the 6cm tumor as well as her left ovary and fallopian tube but they couldn't completely remove the 13 cm tumor and were only able to remove about 90% of it.
Right now she is doing chemotherapy. It's pretty complicated since she does chemo once a week as an outpatient at Dell Children facility where she lives and then on the 3rd week of every month she gets admitted into the hospital for 3 different chemo drugs.
Recently in February of this year she had an MRI done and they found no cancer left in her body but she still has to do, as of now at least 8 more weeks of chemo. If she is still cancer free then no radiation therapy afterward. But if she does, then there will be radiation treatments.
I have to say, from reading her page and reading the progress on this baby. She is so positive and so happy. And her mom stays so positive. I cant even imagine how she does it, but she does. I know that I am believing in prayer that God will give Payton for her birthday and cancer free bill of health for the rest of her life.
Please take a look at this angel's page:
https://www.facebook.com/prayersforpreciouspayton
And send her some birthday wishes and some likes!
Thanks for reading!
Subscribe to:
Posts (Atom)