Sharing our story...

I had the opportunity to share our story with 60 homeschool students and their parents. It went well, other than me shedding a few tears. Why do I always cry? It really can be a hang up. I do hope to refine the presentation and have the opportunity to do it again sometime. The focus of the talk had to do with God's plan and purpose for our lives, using Psalm 139:13-16, and Jeramiah 29:11. God creates us for a purpose, and uses our differences to mold our lives and help ourselves and others grow. I am thankful for this opportunity, and for the blessings of all the miracles that we have seen along the way!!!

Dr. Visit

We've returned from another follow-up with Zac's surgeon. This was the first one in FL. It was so nice to spend time with family and friends. We have not been able to travel to FL in over 2.5 yrs; both of us have siblings, and I have extended family that live less than an hour from Dr. Paley's new institute. We had a great time. Zac has never been to the beach, and Cai has only been once before. They loved it! I will have to post pictures later.

Dr. Paley gave us a good report. He does not believe that any procedures need to be done at this time. He was very happy with Zac's efforts and progress toward walking. We will proceed with the Physical Therapy and efforts to walk. Dr. Paley expressed very confidently that Zac will walk without assistant devises. He did however recommend a helmet when attempting to walk on his own. We are proceeding to order the walker that he is now trying in PT. I was overcome with emotion today as I saw Zac walk in that walker. It was amazing to see him walk himself closer to a toy in the waiting room that he could reach for the first time, standing on his own two feet! We are so blessed to witness these miracles first hand. God is so good.

We are now on a 6 month follow-up schedule with Dr. Paley. Each visit will determine if anything needs to be done based on growth, and Zac's mobility development. It is a good place to be; and I don't think there is anything that we would do differently. We are so thankful that we had this option with such an amazing surgeon, especially when we see Zac standing and now walking (with a walker)!!!

2 Quick things:

1)We are headed to FL next week for Zac's follow-up apt.

2)Zac walked on Friday in a walker. This walker has a harness that is attached to a bar with a regular walker base. We are trying it to see if we want to order it...so far so good! This is actually not just a trainer, but a mobility devise.

Please pray for one of our support kids family....

My heart is heavy as I post this. One of our kids on the TAR support group (also named Isaac) passed away. It is hitting way too close to home! I think when they are doing so well, we forget about the dangers of having low platelets. I just can't stop crying right now. Please pray for this family.

The post on the TAR Support group site:
"It with great sorrow and tears that I write this email. Isaac passed away yesterday. He fell Saturday and hit his head. Trauma was worse that what we expected and his brain would not stop swelling. We wanted everyone to know as we know many people do not take the paper.

Services will be at Debaun Funeral Home on Wednesday July 15 from 4 pm - 8 pm. Funeral services will be help at 10:00 am Thursday morning." Christa Foust

Her is a link to the obituary: http://www.legacy.com/tribstar/Obituaries.asp?Page=Lifestory&PersonId=129713337

High Point Enterprise news article, June 14, 2009

Power Wheels!

The power chair finally arrived today! Zac has really been looking forward to this. He believed that it would come complete with flames in the back. We said we may find some flame decals, but no, he insisted that they should come out of the back of the chair! Thankfully he was not too disappointed today when it arrived flame-less! I think he was somewhat overwhelmed by it all. We kept it a surprise that today was the day it would arrive. Nana and Papa Ogg decided that a video would be great so they should come too, I think it was a great reason.

As soon as Zac got in the seat he new what to do. I think he remembered from the trial chairs. Thankfully we were able to be outside, he was really wanting to go. There will be a learning curve for all of us. But, he looks like he will get the hang of it soon. I am sure that I will have a few heart attacks along the way. The good thing is that there are some great safety features and speed controls that will help.

We are moving quickly towards walking, but this chair will provide great independence for long distance, etc. He is getting heavier to carry, so this will help with that too. The chair lowers all the way to the ground; he should be able to get on and off by himself. There are also tilt features that may help him to reach things at different heights. All in all it is just amazing that it is here, we are so thankfully for this blessing!

And then they were straight....

Just thought it would be fun to see the progression of Zac's legs...


1) coming home from the hospital 2) 2 months 3) 1yr 4) Aug. 2007 1m post surgery
5)Aug. 2008 post surgery 6) done with both legs, fitted with braces April 2009

Saying goodbye

Zac always wanted to play with Potato Head with this therapist. He even got a new Potato Head as a gift from her today;-)






This therapist brought interesting projects to do, such as planting flowers as they are doing here.







We are feeling a little sad today as we say goodbye to two therapist that have been with Zac most of these past 3 years. Zac will be graduating from the Early Intervention program, and moving onto the Pre-school program. We were not expecting placement in the Pre-school program as he is not developmentally delayed; however they determined that the Pre-school placement would help make transition to Kindergarten much easier, and keep him from any delays as he does not access his education the same way as a typical child.

We have been so grateful to have the therapist, they have kept Zac on track, assisted me with any questions, and provided many solutions. Zac (and all of us) would not be where he is today with out their help! They have made it seem like play, and Cai always looked forward to them coming, too; they would let him help. They have been more than therapist, but family friends! They will be missed!!!

E-mail update 4/24

We are returning to Baltimore for Zac's follow-up from the Fixator removal. He has worn the Spica cast for nearly a month; but the brace was fitted on Wed., which he is now wearing full time. It was a huge relief to get the brace as now Zac can sit and scoot again. I am so glad to have that past us, it was a real challenge!This trip to Baltimore came a little sooner than expected as we thought it would be another week to two. We learned just this week that Dr. Paley will not be in Baltimore through the end of May, but that his last day is on Tues. 4/28. Our choice is to go this Monday or wait until he is in FL. in June. Zac can not wait another month to resume Physical Therapy, so we have no choice but to get there on Monday. Thankfully the brace was able to be rushed and done this week.We have good news on Zac's Power Chair and expect it to be in next week. Hold on everyone...Zac loves to do things "super fast" and "go" "go" should be fun!!-)We are thanking God for His grace and providing all of this to be possible and to be at the end of the process for the left leg!

Thank you all,James, LeAnn, Cai, and Zac

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.

Another miracle!

Zac woke up so well this morning. Almost happy, knowing that Dr. Paley was going to change his "robot" (the external fixator.) He was so peaceful the entire morning, even through the "going to sleep part." That made it a little easier for all of us! We are also encouraged, knowing that many prayers are going up...it is evident.

The Anesthesiologist had some difficulty incubating the air ways as Zac's are smaller and set back along with his jaw. This makes it difficult, and apparently is getting a bit worse has he gets bigger. It, however, does not effect his breathing. All of this delayed the actual surgery.

The surgery is over now, Zac is just waking up (James has gone back to hold him, normally I go 1st, so I am trying to be patient!). We have heard from the Anesthesiologist, and the surgeon (Dr. Paley). First the Anesthesiologist shared her perspective on what amazing thing Dr. Paley was doing. That was so comforting to hear, we knew then that another miracle had taken place.

Then Dr. Paley came out and happily announced that he had constructed a knee joint! He went in through the top of the leg, and using the cartilage formed a joint. He then used a synthetic material to act as a ligament for flexibility. The external fixator has changed to have a hinge. We will be removing a rod daily and exersising this new joint. The quatracept muscle is intact and should work nicely. As he was describing the range of motion that Zac's leg might get, it looked much more than the 20% that he had originally expected!!

We are just in awe, God is using this surgeon to work such miracles on Zac's legs!!!

As for now, we will nurse our precious little man back to recovery. Then we move a little closer to functional, mobile legs. Our overcomer continues to teach us that NOTHING is impossible...God is in contol!!!

e-mail 01/12

Hello everyone,

Just a quick note as you start your day (or are ending it) that Zac will
be going in to surgery around 9am.  Dr Paley described what he plans on
doing but still left it open with "we'll see while we're in surgery"
with what the final outcome will be.  He did say the x-rays today looked
good for what he was planning and that this leg has been better than the
other.

Zac's platelets were 113K today which is great and he won't require any
extra before surgery.  We are trying to wind down and get these boys to
bed.  We'll need the rest for tomorrow.  It never gets any easier to
send a child in for surgery but we do feel a good presence of Peace
around us this time.

We'll update as we hear more.  Thank you all for the prayers and
encouraging emails.  Every one is cherished.

James
LeAnn, Cai, and Zac