JTWF Family Blog

JTWF Special Kid: Austin

2011-04-27T08:20:00.001-04:00

Austin was born with an extremely severe and rare form of Hirschsprung's Disease, resulting in Short Gut Syndrome. He has ~30 cm. of functioning small intestine (only approximately 10% of his entire intestine remains). He is TPN dependent 13 hours a day and has an ostomy and g-tube. He has very high ostomy outputs, so he also gets an additional 1,000 ml of rehyrdation fluids in the middle of the day, so he's "hooked up" 17 hours a day. He is listed in Pittsburgh for a small bowel transplant. His Short Gut Syndrome has been managed by Pittsburgh Children's. Despite all the medical challenges, we try to keep his life normal. He eats some by mouth, goes to preschool, loves lawn mowers and tractors and is a huge joy in our lives. See http://grey.colorado.edu/shortgut/index.php/Main_Page for more information about Short Gut Syndrome.

~~As taken from his CarePage

JTWF Special Kid: Bella

2011-04-21T08:38:00.003-04:00

We adopted Isabella in January 2010. We met her for the first time when she was 9 months old. Prior to us coming into the picture:
Bella was born with cocaine, heroine, marijuana, 3 different antipsychotic meds and pain killers in her system and needed to be put on phentanyl and morphine for withdrawals. She was also born with Gastroischisis (intestines were on the outside of her body). Surgery was done immediately to put the intestines back in. During this surgery half of her intestines were so badly damaged they had to remove them completely. This caused a condition known as "short gut syndrome". After her surgery she was unable to come off of the ventilator, she was unable to eat and was kept sedated. She was ultimately sedated for 9 months! The half of her intestines that was left in her belly had failed completely! She NEEDS a transplant of the small bowel to survive. She also has a Spinal cord injury that is so rare, none of the Neurologists at Childrens Hospital of Pittsburgh have ever seen anything like it. The believe it was caused in utero (while still in her mothers stomach) by an assault. Further complicated by seizures she had in the womb from the drugs! Please visit: http://savingbella.blogspot.com

~~As Wriiten by her Mother on her Blog

JTWF Special Kid: Daniel

2011-04-13T10:35:00.002-04:00

Daniel was a sweet normal infant, and at 8 weeks old in January of 1998 he had a severe respiratory virus known as RSV..which resulted in a critical case of pneumonia in both lungs. He was very very sick and spent two weeks in the hospital.

We didn’t know a time that Daniel’s brain was malformed…and as he reached 5 and 6 months old… we attributed his lack of motor skills to delay due to the traumatic pneumonia and lack of oxygen. Sadly, that wasn’t the case.

At 11 months old he had his first MRI, and we found out that despite the traumatic RSV illness…he had actually been born with the condition known as PMG, or Polymicrogyria. The diagnosis was confirmed by a specialist, Dr. Dobyns..at the University of Chicago Childrens Hospital..

Daniel has” diffuse, grade 2b, PMG, with near diffuse frontal-perisylvian parietal involvement. The PMG involves 80% of Daniel’s brain,and is most severe in the temporal regions of the brain. The frontal lobes are significantly involved, while occipital lobe appears almost normal.”

From the age of 8 weeks until today (12 years later) our life has taken a much different path than we ever imagined it would.

Daniel’s PMG and Microcephaly.. results in severe global motor skill dysfunction, seizures, feeding problems, respiratory problems, and orthopedic problems with his hips.

~~As Taken from his website: http://awesomedaniel.com/Home.html

Today's JTWF Special Kid: Zeke

2011-04-06T10:21:00.003-04:00

Zeke is kept alive by technology they are alive only because of the ventilator they use to breath with. Zeke has diastrophic dysplasia a rare type of dwarfism. He recently received a life saving surgery, He had a c spine kyphosis of 130 degrees and it was compressing his spinal cord to the point we could of possibly have lost him. No one was willing to or knew how to do the surgery and i was told it would not help him and he possibly would not survive it. His surgery , after much advocacy and fighting with bureaucracy was done at AI Dupont hospital by a wonderful orthopedic doctor and was a success. He is home now in his cervical halo which you can see on zekes facebook page is Saving Zeke and now here is our Youtube Video: http://www.youtube.com/watch?v=Mytajno5AzU

~~As Submitted by Family and edited by JTWF

JTWF Special Kid: Jack

2011-03-30T10:06:00.004-04:00

Jack has a rare genetic disorder, so rare it has no Name as yet. It involves his Chromosomes, they rearranged themselves during conception and nothing could have been done to stop it. Jack has lots of special needs, he has brain damage, global development delay, which is delay in all aspects of his development, he cannot walk or talk n can't hold anything in his hands, He has severe epilepsy and will never be independent. Jack is such a happy smiley wee boy, n is just gorgeous. We fundraiser for jack as much as we can. His fund is called Jack's Journey and this is also his Facebook page name.

~~As Submitted by his mother Angela

JTWF Special Angel Kid: TJ

2011-03-25T10:16:00.001-04:00

‎"TJ" Thomas Joseph was a very special little boy. He suffered from a rare brain malformation called PMG (PolyMicroGyria) which causes developmental delays, feeding problems, and seizures. A week before his 3rd birthday, TJ had a seizure i...n his sleep. He didn't wake up. TJ enjoyed going to the Preschool for the Handicapped where he got Special Instruction, Speech, PT, OT, Sensory Therapy and Music Therapy. Although he never spoke, he knew he was well loved. TJ 11/15/07-11/7/10.

~~As Submitted By His Mother Angela

You can visit and join his FaceBook Group:
http://www.facebook.com/pages/Jonah-The-Whale-Foundation/103891286309639#!/home.php?sk=group_172260792819551

JTWF Special Kid: Elizabeth

2011-03-16T09:51:00.002-04:00

Elizabeth was born Feb. 26, 2009, with a rare brain defect known as Dandy Walker Malformation. Because of this malformation, Elizabeth had to undergo brain surgery when she was only a day old to insert a shunt to control the hydrocephalus that had accumulated. She has since had four shunt revisions. When Elizabeth was six months old she went into respiratory failure following an upper GI to figure out why she was having respiratory problems. It was determined that she had been aspirating silently from birth, causing severe damage to her lungs. She was on a ventilator for more than three weeks and remained in the hospital for eight weeks. We decided to have a g-tube/nissen surgery to prevent further damage. (She takes nothing by mouth.) At this time it was discovered that Elizabeth also suffers from congenital hepatic fibrosis, a rare liver condition. Children with congenital hepatic fibrosis often need liver transplants at some point so we are closely monitoring that along with her kidneys. Elizabeth also developed double pneumonia when she was one and was in the hospital for six weeks. Unfortunately, she spent her first birthday on a ventilator. Elizabeth is currently on medication to control seizures and is on oxygen at night to help with mild sleep apnea. She is severely globally delayed. It has now been determined that Elizabeth has a genetic syndrome that is the cause of her medical issues and delays. She has had a rough road but she continues to smile and laugh each day, melting the hearts of all who know her.

I have attached a picture of Elizabeth. I write a blog keeping people updated on her medical status, http://myjourneyintoholland.blogspot.com. Also, I made a video highlighting her journey: http://www.onetruemedia.com/shared?p=d312929de00b6c1c6da29f&skin_id=1602&utm_source=otm&utm_medium=email.

~~As Submitted by her Mother, Susan

Today's JTWF Special Kid: Mylee

2011-03-08T10:06:00.001-05:00

My name is Mylee Grace. I was born on August 14, 2006. I have been a fighter since the very beginning. I started having difficulty breathing and spent nine days in the Neonatal Intensive Care Unit where I fought my first battle with aspiration pnuemonia. My first year of life was difficult, I spent a lot of time in and out of hospitals battling more pneumonia and trying to figure out what was wrong. I was diagnosed with severe dysphagia. I aspirate on everything, which means I don't recognize when food or liquids "go down the wrong pipe"...into my trachea and lungs.

My first MRI discovered Mild Tonsillor Ectopia (aka Chiari Malformation). I was to have another MRI scan at 1 year. In November of 2007 I went in for another MRI and this time I was diagnosed with a Chiari type 1 Malformation. I met with my neurosurgeon as I lay in-patient yet again battling another round of pneumonia.

On January 14, 2008 a Nissen Fundoplication was performed so that I would not aspirate stomach acid
(I also had reflux/GERD). My surgeon also placed a gastrointestinal tube into my stomach. I am no longer able to eat or drink anything by mouth. Everything is given to me via g-tube until my brain starts to send the proper signals allowing my swallowing muscles to work properly.

On January 17th, 2008 just 3 days after my first surgery, I had a brain decompression. My brain is no longer herniating into my spinal column. I will continue to have brain MRI's to check for any abnormalities caused by this disorder.

In July, 2009 an abnormality was found yet again on my MRI, cerebellar atrophy. I have been diagnosed with an unknown progressive neurodegenerative disease. I have been clinically diagnosed with Mitochondrial Disease. And at this time it is unknown how much of my brain cells will be taken from me or how much of the atrophy will spread. My team of doctors continues to look for answers to all of my families questions. I am currently in Physical, Occupational, and Speech therapy. I work hard everyday so that one day I will be able to eat by mouth, walk on my own, and say the simplest things like "mommy and daddy". You can follow my journey www.caringbridge.org/visit/mylee.

Today's JTWF Special Kids are the Anderson Brothers: Thomas, Samuel, and Jonathan...All 3 boys are dealing with a Congenital Heart Defect (CHD).

2011-03-01T09:33:00.002-05:00

As SUBMITTED By Their MOM ~~Naomi

I've been sitting here trying to think about HOW I feel or WHAT I feel...and trying to come up with the right words for it...I feel I have been dealt an unfair deck...I feel selfish that I think I have been dealt that unfair deck, when in fact, my children got the raw end of the deal...I feel like I'm slowly drifting back to the days of that horrible anger I had 6 years ago...I FEEL ALONE...there are very few people in this world who can understand the feelings I'm having (that's a good thing)...but yet, way too many people do indeed know what these feelings are...more than I wished ever knew...and unfortunately, there are people out there who have been through worse than I. Six years ago on the 27th of February, Thomas, my 7 year old, went through open heart surgery, for a condition called Tetrology of Fallot (TOF)...I went 8 months before that cursing the Lord and blaming God for doing this to my child. Yelling and cussing at the Lord for punishing my child for my mistakes. And then, that day of surgery came, and I asked for forgiveness and asked Him to protect and watch over Thomas for me...and He did. Thomas came through the surgery with flying colors...there were some bumpy roads along the way...like him going through drug withdrawls from all the medications he was on and incompetent people scaring me so much that I almost passed out...but Thomas made it through it all and so did I. Two years later, we had to watch Thomas get cut from the other side as he had back surgery to repair his congenital scoliosis, which without it, my spunky 7 year old would most likely be paralyzed and in a wheel chair today...instead...he plays baseball and runs around like a crazy little boy...AMAZING...Thomas has a slit on his chest and on his back and is the most caring, PERFECT, little boy a mother could ever ask for...and an amazing big brother. To this day, I know that Thomas is the reason I was brought to the Lord. Thomas is the reason that I changed my ways and walked away from certain people and certain situations and lots of stupidity...Thomas saved me, in turn brought me to the Lord. And everyday I hold onto it...and lately, it's the only thing that's been getting me through this last year or 2 years. Almost two years ago, we found out that our third son was also going to be a Congenital Heart Defect (CHD) baby. After going through everything with Thomas, and then having Samuel, who was perfect and healthy and a brat at times, but the love of our lives, we never imagined we would have another baby who would have to go through open heart surgery. And to top it off, it was more life threatening than Thomas'.

Who would have ever thought there was something more serious than what Thomas had to endure? When I was 6 1/2 months pregnant I had to go on bed rest due to Jonathan being way under the size he should have been and a cardiac baby. Not only was I taken from the place that let me forget about everything to come, my work, but I had to sit around and feel completely helpless and have so much time to think and ponder about what was to come and what could happen. It was agonizing! Then the day came when Jonathan was born, and I literally got to see him for 30 seconds before he was taken away to the NICU. A team of doctors and nurses flooded my room an hour later and gave me the details...he was going into surgery in one hour for a minor procedure on his heart that would help him live for a couple weeks 'till surgery, the next day would have esophogus surgery, as his esophogus and stomach were not attached (what more?) and a couple weeks later we found out that he had to be flown to Los Angeles from Las Vegas, where we were living, because his condition was so severe, the surgeon didn't feel he should stay in Las Vegas...THANKS SO VERY MUCH FOR THE NEWS...Needless to say, Jonathan did amazing (that's an understatement...there are no words to describe how strong this little boy was)...my family and friends came together and prayed and took care of Thomas and Samuel for us, so we could be there for Jonathan...EVERYONE, WE OWE SO MUCH TO FOR GETTING US THROUGH THOSE 2 MONTHS...and since then, it's been wonderful and amazing and I wouldn't change it for the world...I always knew Jonathan would have to have surgery again someday...we were hoping for 3-5 years. In February he had a procedure (I keep calling it a procedure, because it doesn't sound as bad as surgery, but yeah, it was pretty much surgery)...the procedure came back with half good news and half bad news. I knew in my heart that Jonathan was going to have another open heart surgery for the last 2 weeks, but I was holding onto a miracle...but I guess that miracle didn't come soon enough...because on April 27th, Jonathan went through his second open heart surgery. I thought the news wouldn't hurt as much, as I've been expecting it, but I guess I was in denial at the same time.

IT SUCKS! There was nothing I could say as a pep talk to myself...I knew in my heart that Jonathan would do fine and be home soon afterwards...but...IT SUCKS...It's not fair that my baby had to go through this yet again, so soon...he was 11 months old and was yet again going to be taken away for a week...yeah, I know, a week isn't that long, compared to the lifetime to come; that's what I'm holding onto...but..IT SUCKS! But the only thing that matters, is he did spectacular...He's doing awesome now and started walking at 14 months old...This "unfair deck" can be taken away at any time though...I seriously am begging for it to...I want to be able to go on with my children and their lives and be left alone...but I know that will never happen. I know the rest of my life I will worry...because it's something, as a parent of a CHD baby, we have to be ready for. We will never have that normal life that so many of our friends and family have had or will have...we, as a CHD parent, will forever and for always have that little green envy monster popping it's head out when someone has the perfect pregnancy or perfect baby...we, as a CHD parent, will always hold our breath for our friends and family during their pregnancy, as if it's our own child, and cry and rejoice when that beautiful baby is born healthy and whole and perfect...we, as a CHD parent, have had our lives changed forever. We go on with our lives everyday, trying to fit in and not let it change us, but it's too late, it has.

I am a CHD mommy...I will have my outburst...I will have my moments where I break down in tears, for no apparent reason...I will love my children and hold onto them tighter than anyone can imagine...I will devote my life to my children and for my children, like tomorrow may be my last...I am a CHD mommy. Someday, down the road, I can only hope for a decade of no surgeries or less worries and great reports...but for now, I hold onto that day that I get a smile or a hug from all of my boys...my CHD boys and my little brat of a boy (which they all can be, but I LOVE IT)...My children are my life, and no one can say anything else to me to make me feel bad because I don't want to go somewhere and I want to stay home with my babies, even if I have been with them all day. I will not let a certain someone (who supposedly cares for my family) bring me down and ask me, what if they die...fyi, that's the stupidest thing to say to a CHD parent or any parent for that matter, use some common sense...because everyday, I have to understand the risks of all the surgeries, procedures, and life in general...I know the risks far too well and have said good-bye to far too many angels...but I know more than anything that I do have the Lord, MY GOD, holding onto me, holding onto my children, and holding onto those doctors delicate hands as they operate on my baby and my friends' babies. I just pray for strength, strength of my baby, strength of myself, and strength of the doctors and nurses to get us all through the days to come...I pray for healing, healing of my children and other children and healing of my and other parents delicate emotions, that I wish weren't so delicate...I pray for faith, faith in my God and faith in myself and faith in the surgeons, doctors and many nurses who have my baby and other babies in their care...I pray for God's grace and mercy. And thank you to everyone who's always been there for me, for us, with a simple, yet perfect prayer, for that kind gesture, a hug or a smile, or just that friendly word that you are thinking of us.

Thank you to everyone who's been there for us through everything...especially my family and friends who have taken my children and not let them experience the hurt their parents suffer and give them a day of fun in the sun while their sibling has a life saving operation...just...THANK YOU AND GOD BLESS

As SUBMITTED By Their MOM ~~Naomi

JTWF Special Kid: Michael

2011-02-22T10:24:00.001-05:00

Today's JTWF Special is: Michael was diagnosed with Bilateral Periventricular Nodule Heterotopia. Being a mom of a child with special needs is difficult at times and his mom writes about the journey on her blog: http://miraclesandmysteries.blogspot.com/ His mom prays that by reading about their ups and downs that it may help others in ...their time of need or just to have someone else they can relate to.

~~As Submitted by mom, Sharlene.

J&TWF Special Kid: Charleigh

2011-02-16T11:18:00.002-05:00

Today's J&TWF Special Kid: Charleigh who's challenges include Short-Gut Syndrome, Failure to Thrive, a Blood Clotting Disorder, Gastroesophageal Reflux and Tactile and Sensory Aversions. Please read her story below as submitted by her mother:

Charleigh's middle name is Cadeau. It is French for "gift." We could never have realized just how appropriate her middle name is! Charleigh was induced at 34 weeks due to her mother having severe Preclampsia. She weighe...d only 2 lbs and 7 oz! Charleigh's grandfather was in the end stages of terminal cancer. Doctors told him he might have to end of the year at best. Charleigh's Pap-Pap promised Char's mom that he would hang on for his grandbaby. The night Charleigh was born, Pap-Pap was rushed to the hospital and then moved into a hospice. He was able to see pictures of his little grandbaby before passing away 4 days later.

When Char was just a day old, her little belly swelled. She had kinking in her intestines and spent the next 3 months in the NICU. She has been in and out of the hospital 19 times, has had 8 surgeries, 7 broviac replacements, been on ECMO and a ventilator and has had a 2 month stay at the Children's Institute for feeding therapy. She receives 14 hours of TPN, she is tubed fed 8 hours a night and is a possible candidate for an intestinal transplant or the STEP procedure. She has short-gut syndrome, failure to thrive, a blood clotting disorder, Gastroesophageal Reflux and tactile and sensory aversions. When Char was on ECMO, we told her survival rate was only 60% at best. However, they underestimated her amazing spunk, guardian angel Pap-Pap, her abundant happiness and the thousands of people she had praying for her. Everyone says that she is something very special and she certainly is!

~~Submitted by her Mother Ashley

Good Blogs to Follow and Feature

2010-11-05T11:18:00.002-04:00

J&TWF would like to know what good blogs are out there from families dealing with disease, disability, and living as a family dealing with a special-needs child? We would really like to feature and write about a specific disease or disability everyday. Any Suggestions?

J&TWF

New and Improved Website

2010-08-03T10:05:00.001-04:00

Our NEW and IMPROVED website went Live yesterday. Check it out and let us what you think.

JTWF

Meet JTWF Special Kid- Kaleb!

2008-08-10T19:29:00.000-04:00

We are a family of with 9 children, 7 of whom are adopted. We started out intending to just adopt one or two children from foster care whom needed a permanent home. The children kept coming and we were more blessed with each and every one of them. Kaleb came to us through the foster care system after birth when he was released from the hospital at three weeks old. Kaleb was born addicted to drugs and alcohol at birth as well as having Trisomy 21, Gastroesophageal Reflux, Heart Mur- Murs, a hernia, Neurological impairment, Asthma, Chronic Stridor, Sickle Cell Trait, Hypotonia, Cerebral Anoxia, Deafness, Epilepsy, Respiratory Insufficiency and Apnea. We were told he would never walk or talk but he walks, talks and uses sign language as well. Kaleb is a gentle soul with an angels face and we are very blessed to have him in our lives!

Barb McDonald BA/FLE/ SWT

President of S.P.I.D.E.R.

Special Parents Initiative for Down syndrome Education & Resources

www.lapeerspider.org

Meet Kaleb!

2008-08-10T19:24:00.003-04:00

He's My Son -For Jonah

2008-08-10T19:06:00.001-04:00

Who is Jonah?

2008-08-07T15:54:00.004-04:00

As the executive Director of Jonah & The Whale Foundation, I would like to share with you, Jonah, for whom the foundation is named. He was one of the greatest human beings that I ever been blessed to know in my life. For someone who faced insurmountable physical and mental challenges, he knew and understood so much. Jonah loved with everything he had to give and he loved to be loved.

As his mother, I felt so much agony watching and feeling his pain throughout the three years of his life. My spirit ached as I watched him struggle time and time again to survive and rise above his suffering-his bravery throughout was astounding to me. I know the frustration of knowing your child better than anyone, knowing what is normal for them and what is not, what they should look like or not, and what every whimper every cry meant and yet being so unheard!

Jonah was Ignored to Death! He died at the hands of doctors who decided that because Jonah would never be the child that they wanted him to be--the child that made them look like heroes, that his life somehow was not worth saving or investing in. I know, first hand the frustration of trying to convey your child’s needs to ears that don’t seem to listen-until it’s too late! Jonah died of Advanced Dilated Cardiomyopathy and Congestive Heart Failure that was not detected until six days before his death. Ironically, when Jonah was born his heart was the only thing that was healthy.

I will never understand how a child born with a healthy heart and connected to a heart monitor and oxygen monitor his entire life could die from Heart Disease? I have questions that I will never get answers to and that hurts.

The inspiration for the Foundation came from that frustration. There were too many cooks in the kitchen and yet no one had a recipe! In other words, a lot of doctors knew something about Jonah but no one doctor knew a lot about Jonah. Because of this he fell through the medical cracks and it cost him his life. I learned so much from being a parent of a disabled and chronically ill child and I learned so much from the struggles of other parents of disabled and chronically ill children that I wanted to use my teaching ability to help others learn how to encourage and enable parents to better organize and better locate the appropriate information for doctor appointments, ER visits, and IEP meetings.

What is your story?

Again, Welcome!

2008-07-22T16:41:00.005-04:00

This is Jonah and he was pretty great! We want you to BRAG on your special needs child. As Jonah's mom I have always said selfishly that Jonah has made me a better wife, a better mother, and a better person, how about you? We want to hear what makes your child so incredible. Why is your child your hero and how have they changed your life and the life of your family? We want to get to know the hundreds of kids and families we have helped and will help.

Thank you and enjoy!

Welcome!

2008-07-05T20:16:00.004-04:00

We are currently developing a blog community for families of disabled & chronically ill children that have used our services in the past or who may use our services in the future. Please visit again, as we are currently under construction.

Thank you,
J&TWF