Periventricular Leukomalacia

I don't have any advice for you but I wanted to let you know that I will be praying for you. It sounds like you are going to need some support so I hope you have a close family and a good church family to help out. God bless!

You have been blessed with the greatest gift of all the life of your grandson. I'm sure that after a little practice it will be second nature caring for him. God will guide you through this unsure time and this little guy has got the most special grandma of all, he has you. God bless you and your family and may you all enjoy the great times together.

A Loving Grandma,
D. B.

Hi M.,
We just finalized the adoption of our 4 year old granddaughter last fall, but we have had her full time since she was 2 and had her a lot before that. We had been empty nesters for about 7 months when we got her full time, and it was definitely a detour on our journey--not one we would have chosen, but one we have willingly embraced and have been totally overjoyed with the love and happines she has brought to our lives.

The only advice I can give you is to be patient with yourself and give yourself time to get into a new "flow" with the addition of a newborn. You will probably feel overwhelmed and exhausted at first, but you will develop a new routine and what I call a new rhythm in the household. Good friends, neighbors, extended family are all people you will want to reach out to and let them know what you need and how they can help you. I've found people are very willing to help, but you have to ask because they don't know what you need.

There are several churches that offer parents of special needs children a "night out" and they don't charge for watching the child for 2-4 hours on a Friday night to give parents a break. They have volunteers and medical staff to care for your child. Custer Road UMC in Plano is one, but I know there are others as well.

You will be blessed for what you are undertaking and I will keep you in my prayers.

B. M

Hi M. -
My twin boys had severe grade 3 IVH when they were born at 26 weeks. An IVH is bleeding and swelling from inside the ventricles. They are now 3 and both boys are happy, healthy, and no delays. The doctors prepared us for the worst, Cerebral Palsy, severe motor and speech delays, learning disabilities, etc. Needless to say we were scared to death!

One of my twins has hydrocephalus as a result of the his IVH, and he does have a shunt. But to look at him, you would never know. He is only limited in playing contact sports.

I would also recommend that you contact ECI. My boys were seen for over a year. Most insurance will pay for it, but they base what you pay off of your net income.

Congrats to your new grandson!

Children with PVL can have a wide range of outcomes from normal to severely impaired. My advice to you is to closely monitor your grandson's development. Early intervention and a stable, stimulating home environment are key factors in a good outcome. If you are concerned about your child's development, contact Early Childhood Intervention-a federally sponsored program. They will evaluate him and determine if he needs services. Keep in mind, that a child has to be significantly impaired to qualify for their services. If you sense that your child may have a mild delay but is not eligible for services, work with him yourself. Stimulate his development (motor, language, etc). It is amazing what a good family environment can do for a child!

M. s,
what a blessing to be able to care for your grandchild. He was not put up for adoption because the lord is giving you the gift of raising your baby. Must remember the lord will guide you every step of the way.
God has a plan for every one of us.
Good luck and god bless.

S.contreras

Hello M.

I just wanted to say that my son will be 7 in feb and he was full term but also has PVL..We have had a long road but it has been a good one..We found out that he had it when he was 1 after fighting with the docs..He has had delays in motor skills..He walks with a slight limp on his right side because his left side of the brain was affected more then the right and your left side controls you right and your right controls your left..When we took him to the neurologist they didnt think he would ever walk but he does he walks and runs and climbs for the most part like normal kids he gets tired alot quicker then normal kids..we live in Georgetown and have a great Neurologist in austin his name is Dr Ezam Ghodsi..He is located by the new Dell childrens hospital i would recommend him to anyone..We used MHMR Bluebonnet trails therapists until he was 3 and then we switched to Georgetown Physical Therapy..He has Tactile problems with foods and so we had occupational and physical therapy with him..MHMR came 2 times and week for an hour and then when we switched to georgetown physical therapy the went three times a week for an hour..MHMR was a godsend i couldnt thank them enough..if you have any questions or just want to talk please e-mail me i would be happy to talk with you and tell you all the info that i can about this..i always felt alone when this all started because i didnt know anyone with a child with the same problems...my e-mail is ____@____.com hope to hear from you

Hello
Dr. Tootla is a World Renowned Cancer Specialist and has a website that talks about different disease. one being leukemia's , email me and I can let you in ____@____.com
My prayers and my hats off to you for taking this wonderful baby, you are so blessed. my prayers to you. Oly