If it wasn't for the support of online moms, I think sometimes I'd go crazy. You see, I don't personally know anyone else in real life (IRL) that has a micropreemie with cerebral palsy. I do know of one micropreemie but she is not facing the challenges Liam does- not even close. I don't even know anyone IRL that has a child with cerebral palsy!
Because of the internet, moms all over the country are only a quick 'send' button away. I joined an online support group for micropreemies a short time after bringing Liam home from the NICU, but after a while, the issues and needs Liam had were quite different than the rest of the group. I found myself not fitting in. I then found an online group for moms of kids with CP and to say that it has been a wealth of knowledge is no exaggeration.
Liam is at the point where he has outgrown his car seat carrier but we keep using it because it is so handy to carry him from one place to another. But there will be a time very soon where it will no longer work for him. Because he still doesn't have head control, he needs either a special needs car seat or a high end seat that is commercially available.
The special needs seat is $700.
The commercially made ones that work for Liam are around $300.
This is where my online community of moms comes into play. I had asked the group what they do when it comes time to transition their kids. Because every state, every group and every situation is different, the answers were a bit varied, but it seemed quite a few people were able to get the seats paid for through specific organizations.
A couple of those organizations were Children's Miracle Network and the Easter Seals.
I contacted CMN first and I have to say that their response time is amazing! They are friendly and helpful and she went out of her way to figure things out for us. Unfortunately our local chapter does not have a budget set aside to assist families in our situation. I then contacted the Easter Seals and they do have a program!
Our local Easter Seals will help families of kids with special needs purchase needed items that insurance won't pay or medicaid doesn't cover.
Because Liam's car seat fell under that category, they sent us a check for the total amount for Liam's new high end commercially made seat.
And I never would have known about these kinds of programs if it weren't for the online community.