The Fixator is off!

Zac's fixator was removed today...I for one was so happy about that, it has been a long time coming!!! My excitement, however, was dampened a bit when I saw the cast that he has to wear --thankfully for only 2 weeks. It is a Spica cast, which comes all the way up and forms into a waistband. I have heard horrible things about getting them wet and the smell that comes along with that. Like I said, thankfully it is only 2 weeks. The other thing is that he cannot sit up. it should be interesting trying to keep an almost 3 yr old named Zac down for 2 weeks. I was not planning this well as he will be in this cast over Easter. Then his cast will be made removable in order to mold him for the brace. He should have the brace in about a month.

We found out today that Dr. Paley will not be going to Orlando after all as the contract fell through there. He is still considering a place in FL., we should know the next time we come.

I will post pictures once I get a chance. We are at the H-P house at the hospital with limited computer access. I know some of you have e-mailed, but I have not had a chance to respond in part due to our home computer going down with a virus, hopefully all will be recovered this week...including pictures that I have not saved elsewhere!!!

E-mail update 3/09

Dear Friends and Family,

Just a quick update to fill you in on our ever-changing lives. We will be back in Baltimore on March 31st for the removal of the external fixator. This has been a long time coming and we are all looking forward to seeing this fixator go!. Zac's leg will be casted with a removable cast so that we will be able to continue bending his leg a few times per day. (We are now getting about 50% range of motion in the new knee!) Then about 4-6 weeks later he will be fitted with a brace. This is all very exciting as we approach the completion of the process for the left leg. Zac will receive a new brace and a shoe stack for his right leg this week; providing more equal length and stability. I expect to see Zac standing longer and longer once this is in place. Although not yet completed, this is a good place to be in the process!

We have had an unbelievable few weeks as several things have fallen into place in other areas of our lives. God has always provided in amazing ways. With James being out of work for a while, and I only working part time, we have continued the Cobra insurance coverage as without it these surgeries would not be possible. The company that the insurance was through changed benefits carriers which gave us an extra month to make a payment, but then 2 payments were coming due and we were unsure how we would be able to cover both payments. Just in time our income tax return came through and we were able to make the payments! Then the next week James received a job offer and began working the following week. We are praising God for providing these things in just the right timing! James is now an employee of MasTec Advanced Technologies and will be installing DirecTV satellite systems. He is very excited about this as it will use several of the things that he has been training for as well as his natural technical interests. It was such a long time coming after hundreds of applications, and with the challenging job market we are just so grateful!
God is so good -through it all!

Thank you for all of your prayers. We love you all.

James, LeAnn, Cai, and Zac

too smart for his own good...

We are currently transitioning Zac from Early Intervention. All of the evaluations by various therapists, psychologist, and Pediatrician have had excellent results from a cognitive stand point. We are torn as parents as we are proud of how well he is doing, how hard he is working, yet he is not helping his own cause. The focus for the state is educational assistance, but he is proving over and over not to have any developmental or cognitive issues at all, yet he has orthopedic impairments and cannot access his education without constant assistance. At the age of 3yrs he will not require full time education, yet he requires OT and PT --that will also aid in accessing his education. Without this qualification then we would need to soley rely on insurance for OT and PT --they only allow a limited amount of visits. Do we fight this decision, or do we let it go and fill in these gaps somehow on our own?! I don't think these guide lines were written for the Zac's in this world. Once again he is the exception to the rule.

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

The house of healing needs healing!

Below is a clip from Sinai's website. The Hackerman-Patz house has been our home away from home, and provides much healing for many families. Today the house is closed due to extreme flood damage after a pipe burst in the second floor. This happened the day that Zac was released from the hospital. He was released in the afternoon so we were going to stay the night and then return home on Sunday, the next day. The staff transferred all of the residents to a local hotel, which is where we stayed that night.

While James packed all of our things up he said that he was walking in water. The flooding came from the second floor when a pipe burst in the walls. It took them some time to even find it and get the water shut off. The ceiling fell in one room. The light fixture fell in the room we were staying. James had moved his laptop computer (used to continue his online classes) to the "safety" of the bed, but when the light fixture fell, it dumped water directly on the computer! Needless to say it, it is not working. Thankfully the house insurance will reimburse the repair bill.

This home holds a special place for so many people. Some of whom are displaced to a local hotel. New residents will have to find other places to stay which are much more expensive and inconvenient to the hospital.

It is unclear how long it will take to repair the house. We were told yesterday that even after the insurance clears, there will need to be fund raisers to help cover the expenses.

The house holds many memories for us, it has a very special atmosphere where parents can connect with others dealing with many of the same issues, and kids can be kids despite the difficulties of what they face.

The Hackerman-Patz House at Sinai Hospital

The Hackerman-Patz House is a comfortable and convenient place to stay—a home away from home—designed with the patient in mind.

The front door of the Hackerman-Patz House is just steps from the Rubin Institute for Advanced Orthopedics, the International Center for Limb Lengthening, Sinai Hospital and the campus of the Levindale Hebrew Geriatric Center and Hospital .

The staff at the Hackerman-Patz House is dedicated to keeping guests safe and secure, and to helping to create an atmosphere that is as homelike as possible. You will have the freedom to maintain the privacy of your family so that you can draw strength from one another, and, if you choose, the opportunity to find support through interaction with other guests.