Let's Introduce Ourselves!!

[Kathy]

My name is Kathy and I'm a Care Coordinator. My own son had special health care needs due to a diagnosis that is usually fatal by the mid-teen years, and we lost him at the age of 14.5 back in Jan. of 2006. I also have a beautiful 11 year old daughter. My husband and I have been married for 18 years.

I love my job, and feel that my son trained me well! I look forward to seeing this website grow into an active community.

[JoanInPA]

Hi, I'm Joan and I work in Information Technology. I belong to some professional groups, and we use message boards and stuff, but this is my first time info-sharing via the internet with other parents. I'm going to keep checking in to see what's going on.

I have a wonderful, creative son with ADHD. Things have been going well for him lately, but my niece (who is living with us right now) seems to be experiencing a lot of issues with depression, so we are having a tough time right now with her teen years. I have a feeling everything will work out though.

[Kathy]

Hi, Joan!
I'm a veteran of message boards, it seems. My son's special needs were very complex and he didn't travel well for the last 5 years of his life, so I connected with other parents online. I'm very excited about this website! I've passed it along to our parent partners already.

[Cheryl Ruoss]

My name is Cheryl and I am a mother of two boys and stepmother of three girls .My oldest son was born on time but a low birth weight due to my high risk pregnancy. When I remarried ,my husband and I had a son together. I was being very careful with my pregnancy since my last was high risk. I ended up with Strep B infection, causing me to go into premature labor and delivering my son via C-section 11 weeks early. He had multiple problems and stayed in the NICU for nine weeks. He was diagnosed with hydrocephalus at 4 months and had emergency surgery to place a VP shunt. He was diagnosed with Cerebral Palsy by the time he was two. Just last month he had severe headaches and had to have emergency surgury on his VP shunt. He is healing well. The girls are my husbands daugters from his first marriage, and all had different levels of learning disibilities. So at one time I had 5 special needs children home at once. The girls are all out on thier home and have given us 3 granddaughters so far. My oldest son graduates next spring from High School. My youngest is in his last year of middle school .The boys participate in Special Olympics. Thier basketball team has made state games the last few years ,allowing them to go to the Penn State main campus for the games. Special Olympics has allowed us to make some very good friends and gives the boys something to look forward too. It is such a boost for them I highly reccomend it to anyone who is looking for some special time with thier special needs chld.

[Cheryl Golembiowski]

My name is Cheryl Golembiowski. I am a stay at home mom of 2 children, a son, Joshua who is almost 11 and has Down Syndrome with numerous medical problems and a daughter who is 5 1/2 and she has "princess" syndrome (she expects to be treated like a princess)!!! Both of my children are wonderful blessings to me and I feel it a priviledge to be given the opportunity to raise them. I homeschool my daughter and do alot of schooling with my son to supplement his public school experience. I actually have always had the desire to work in special education and actually went to college and majored in that. I keep myself busy with the children and working along side my husband as he is a pastor. Our lives are never dull. It is a joy to connect with people online like this in the free moments I get (not many!!!) Look forward to information from you all and trust that I will have information that will be beneficial to some of you.

[Leslie Ellis]

Hello Kathy, my name is Leslie i work at a college called Mansfield University in the Mansor Hall, i've been there for 7yrs now i have a son with special needs he is 9yrs old now and he has ADHD, i've seen him when the medication where's off he is very talkative i think i had ADHD as a child but i was never on any medications, but i am learning how to deal with everyday stuff with my son too, he is my only child. I've never been married but i have a boyfriend that helps out with my son too because all kids need a father figure in there life. I use to take care of my son all by myself and it was hard but i am learning something new everyday about life and kids with ADHD. I'm sorry to hear about you losing your son.

[Ann F]

hi everyone. i'm ann. i am a stay at home mom. my 6 yr old son was diagnosed with a from of brain cancer, in sept 2007. he went thru brain surgery, about 7 weeks of radiation and 4 rounds of chemo. in december, we saw a dramatic reduction in masses. in feb. 2008, he was "labeled" NED (no evidence of disease). in august 2008, they did find a new mass, but the LP (lumbar puncture) was clean. late next month, aj will go back for another mri/lp and we'll see if there has been any change. until we have conformation, one way or the other, we are calling the mass scar tissue.

i also have an 8 yr old beautiful, strong daughter. my husband has enlisted in the army to ensure that our son will continue to keep up with quality care, over years of testing, etc. he and i will celebrate our 9th anniversary on dec 31.

i look forward to getting to know everyone here.

[Patty]

Hello everyone! My name is Patty Gall and I am a stay at home (term used loosely, b/c we all know we don't stay at home) mom and live in Western Pa. I have a daughter, 11, and then after more fertility treatments, we tried for a boy. But, we learned that God has his own plan and blessed us with 4 beautiful daughters at once. Yes, quadruplets. They are 8 now. With this high risk pregnancy I ended up delivering 13 weeks early, with one being delivered spontaneously at home. This was followed by an oddly-enough calm phone call to 911 by my mom (nerves of steel) and chaos of many paramedics, ambulances, etc... and a helicopter ride to Pittsburgh where my high risk ob was and where the other 3 were born via c-section. All very tiny and under 2 lbs. each. Very scary time in our lives.

Natalie suffered a Grade 4 brain hemmorhage (the worst level) on the right side of her brain, hydrocephalus and normal premie issues; she had surgery to have a VP reservoir and then later a shunt placed in a second surgery. Emily has PVL (periventricular leukomalacia) which is damage to white matter in the brain. Mary had a Grade 1 brain hemmorhage which resolved on it's own and needed no further surgery. And Heather dealt more with feeding issues (she couldn't do the suck, swallow and breath all at the same time), so she came home with a NG feeding tube until she could learn to take the bottle on her own (about 1 month after home).

Emily, Mary & Natalie were all diagnosed with various degrees and types of Cerebral Palsy. Natalie has moderate left-sided hemiplegic CP; Emily has spastic diplegic CP-moderate; and Mary has very mild spasic diplegic CP. They receive OT, PT & speech therapies (in and out of school) and are doing very well.

I have been blessed with very special doctors, cooperative & dedicated school teachers & staff, and many volunteers to help with these children. Had I not had these children, I would have missed out on so many friendships and special people in my life now. Looking back when I was pregnant and scared beyond belief, I couldn't see why 'God had done this to us' - why was he doing this to my 2 year old daughter - how would I ever be able to just sit down and read a book to her??? Every year the picture becomes clearer and clearer.

I can't wait to hear from more mothers & fathers of special needs children here and the issues they are dealing with. Thanks for starting this up!

[momof5]

Hi Everyone,
My name is Lori and I am a mother of 6 children. I am married to a wonderful, supportive husband, Scott. We have been together for 13 years. He helps in so many ways. My husband has Glaucoma, which took his vision when he was 20. Although he has lost a good portion of his vision he is my rock. I get through everyday because of him.

My oldest son Robert is going on 20 and is living on his own. He did not live with me from 15 through being on his own, due to many medical issues and then the law getting involved because of his wrong doing's. So he went to a facility ordered by a court. Don't get me wrong though, it was best for him. We could no longer control him and it helped him become a responsible young adult.
My next son Morgan is going on 19 and is in college. He is dating a girl from England and is madly in love with her.
My next son is going on 15 and has Asperger's, ADHD, and other behaviour issues. After many years of therapy and fighting for his rights, he is doing better.
My daughter is going on 13 and has ADHD and is a victim of s. abuse. She is doing better. Every day is a new experience with her, you know the teen girl years.
My son who is 11 years old has Juvenile Glaucoma and Epilepsy, seizure disorder. He has had 4 surgeries and many complications. He has a tube shunt in both his eyes also. Everytime he went to surgery and the doctor said, "About 5% of children have this complication," we would ask to talk about that complication because sure enough our son suffered it. He is losing his vision and requrires more surgeries for cataracts that have developed. He suffers uveitis a lot! He has a blown pupil due to extremely high pressure after surgery for his first tube shunt, which makes him sensitive to lights. We visit CHOP and Wills Eye in Philly often. We are scheduled to be there the end of February.
My last boy is going on 6 in June. He was born with a cleft lip and palatte, FTT and partially deaf. He has had many surgeries to close his lip and palatte, but still has a fiscula. Due to him not growing much by the time of the palatte surgery it was very difficult to close it completely. He still has problems hearing. He uses speach and ASL to communicate. We are working with him with the ASL to help with a lot of frustration.

So that is about my family. I am glad that I was informed about this website and looking forward to see how it blossoms.

[Tracy]

Hello. A friend of mine gave me the link to this website. My name is Tracy and I'm a mom to 4 girls , 11, 9,5, and 2(almost 3) years old.
We live in NW PA. My youngest was born with a rare condition called VACTERL Association.
VACTERL is an acroynm for different types of defects that randomly happen. V is for verterbral , A for imperforate anus (no anal opening) , C for Cardiac, T for tracheal fistula , E for esophageal atresia , R for renal and L for limb, and there is an S for single artery umbilical cord which some of our children are born with. My daughter was born with the
V-fused and hemivertebrae of the spine, syringomyelia, tethered spinal cord
A- low imperforate anus with rectovestibular fistula (repaired at 2 days old), and a double colon
C-5mm Atrial Septal Defect which we hope has closed
R- has one functioning kidney, her right kidney was lost due to an ectopic ureter ( misplaced ureter), a neurogenic bladder
L-missing right thumb on her right hand , radial hyperplasia, shortened right forearm,and left hypoplastic thumb
She also has numerous allergies to milk , soy , wheat, eggs , peanut , barley , oat, Septra(medication)amoxicillian with potassium clavate(sp?) and latex. So far in her life she's had 2 major surgeries and 3 minor , numerous testing and she is my spunky little girl that just keeps going. Looking at her today you would never know that she was born with so many health issues. But we deal with them as they come and its become our new normal. All children born with VACTERL are as unique as a snowflake. No two children are alike.
We go to Pittsburghs' Children Hopsital for some treatment and Cincinnati for others. We never know what each day is going to bring as sometimes everything isn't always fixable. But we take each day at a time and love to the fullest.

Its great to meet you all here and hoping this new group will grow so I can meet other families on this side of PA. I will pass this group on to our special needs group we have in our area. I am also a veteran to message groups as I've had to join many since my daughter was born to be able to care for her unique needs.
I also am a homeschooling mom as well and have homeschooled now for the past 6yrs.

Tracy
www.caringbridge.org/visit/margaretreed1