Children with Special Needs... a priority?!

I just logged onto our support group site and found this post. As a mom with a child of special needs the changes in our government, and the economy it has been a concern as to how these changes may effect those who are truly in need...the most vulnerable! This post gives me cause for concern. Many children with special needs do not have a loving home that will provide all that they need no matter what. Zac has benefited a great deal from these services, I can not imagine not haveing them!

"Hello everyone,
I usually write about all the great things my amazing little girl is
doing, pouring my life and feelings out to all of you. A year ago I
didn't think my life could get much more complicated than having a
child with special needs but I new everything would be okay because I
am an Developmental Specialist and I had so many connections to
services for her. I knew I could give her the best chance for a
positive future. I know my Lord is always looking out for me and
hears my cries for help but now more than ever I need my prayers to
be heard. Yesterday it was made official.... No Early Intervention
Services for any child not receiving federal funding. Now not only am
I out of a job, a job I loved with my whole heart, a job that was
understanding to Emily's needs and my responsibilities to her as a
parent. Not only am I out of a job that I have been doing for over 10
years, now my little girl and many other special needs children will
not be getting much needed services to better their future. I can't
believe that anyone thinks that this is okay I don't understand how
someone can just take services away from children or people that
can't speak for themselves. Please keep us in prayer I know that I
myself am going to shout from the mountain top and ask God to change
this. I am going to fight this I don't know what I am going to do
next but this can't happen." Brooke Mommy to Emily 11 months

Zac is due to graduate from Early Intervention in May. He is undergoing testing and evaluation now, and we meet with the team in May again. What we have been told now is that he does not qualify for any other services because he is not developmentally delayed. We are working on this, because obviously he is Orthopedic Impaired. He is really needing OT right now, and obviously PT. They do believe he will qualify once again when he goes to Kindergarden. So far our state has not stoped any services that we know of due to expences.


Just something to think about, pray about, and to act if you can.

Zac stands on his head...

Zac's "new trick"! Last week he started to do this. He rocks from a sitting position and puts his head down at the same time that he comes up on his feet. I was concerned for his neck at first, but the Physical Therapists have said that he is not on his head enough to cause problems, and that it is just great that he can weight bear on his legs -on his own! I am waiting for the day that he starts doing somersaults!

E-mail up-date 2/09

Hi All, it has been a busy few weeks including a follow-up back in Baltimore, and a new PT schedule. Zac is still on pain medicine on an as-needed basis. The further out from surgery the easier it gets on all of us. Zac has once again found his way to scooting on his bum; it is a little more side ways now. He is also getting used to the additional weight of this fixator and rolls around with it. We are stretching his new knee 2-3 times/day. We are getting about 30% range of motion at this point. Zac is not moving it yet, he doesn't care for the stretching, and so he has no desire to do so on his own.

The follow-up on Jan. 26th went well. Dr. Paley was pleased with the outcome and the progress. The fixator should stay on for about 2-3 months. Then Zac should be fitted with a hinged brace that he will wear for a while just like the right leg. Zac is being measured today for a new brace on the Rt leg. This has been long awaited as it has been a yr. since we got his first brace. This one will also bend at the ankle--which should aid in walking.

X-rays were taken at the follow-up on both legs. This time Dr. Paley said that he has a plan for the right leg that is very similar to what he has done with the left leg. The right leg appears to have gone back to an overlapping position (the top of the tibia is next to the bottom of the femur). If you remember the right leg is about 2 inches shorter than the left leg. The overlapping seems to be the best case in that it could mean that the difference in length is not a growth plate issue. However, this means doing the right leg again, this time with knee construction similar to the left leg. The reason that it was not done the first time is that the cartilage came off of the femur, and Dr. Paley did not think that he could do the construction. After the success of the left leg, and knowledge gained, Dr. Paley believes that he can use the cartilage from the tibia to construct the knee in the rt leg. All that said, we are unsure of when, but we are just hopeful that Zac can one day have a knee in the rt leg too! It looks like that will be in Orlando at Disney Children's Hospital--where Dr. Paley is relocating starting June 1st.

Physical Therapy is going well--most days. Zac has NO trouble expressing his will; but if it can be redirected, then it can work for us, for him! I have no doubt that what Zac wants to do he will do. Zac has stood for a couple of seconds on his own--mostly on just the right leg considering the difference in length. Part of the brace fitting today will include measuring for a stack to put on his shoe to even out the length. He is also putting one leg in front of the other in a walk-about walker (he is harnessed to the walker allowing him to hang free with his feet on the floor.) He likes to kick balls this way too. I am thinking that once his legs are even, and with the new brace, it will all come together.

I will let you go before this gets any longer. We are just thankful for all that God is doing here, He is so faithful. The next follow-up appointment is Mon., Feb. 23rd.

Thank you for reading, for praying!

LeAnn, James, Cai, and Zac