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

New Surgery Date -Email update

We have not written in a while. Scheduling the next surgery for Zac has been a challenge, but we finally have a date; January 13, 2009. It could have been in Dec., but for several reasons it should be easier to have the surgery in January. This is the second surgery in the process on the left leg. Zac has had the external fixator on this leg since July. It is taking longer, but we are expecting better results. This surgery will involve moving the bones in place and possible knee reconstruction. It was after this surgery on the right leg that we learned that it would not be possible for knee reconstruction on that leg. We are praying for the best possible outcome. Remember, I was prompted to pray for knees...we still believe that it is possible for Zac to have a knee joint of some kind! The fixator will remain on his leg for a month or 2 after this, and then it should be removed and casted, before the brace fitting.

If there is knee reconstruction his physical therapy will increase up to 5 days/week. We are also in transition with our current Physical Therapist.

We have also learned that Dr. Paley will be leaving his current Hospital in July, 2009, and he has not yet announced where he is going.

As we look to Thanksgiving tomorrow, we are also thankful for God's faithfulness. He does not promise an easy rode, but He is always there. Sometimes it is in the simple things that if we are not looking we miss. I got an e-mail today from another parent who has a child with TARS; I met his sister in a store the other day. She stopped me and said that her niece has the same thing. Remember this is rare, and there are only hundreds of cases in the US. It is just nice to get a tap on the shoulder from someone who "has been there!"

We ask that you keep us in your prayers, life has been challenging on all fronts for us lately. We are seeking God's will on where we should be living and working. We covet each of your prayers.

Thank you,
and Happy Thanksgiving!!!

James, LeAnn, Cai, and Zac

still waiting

We are still waiting on answers from Baltimore. It appears that Dr. Paley will be leaving Sinai Hospital as of July 1, 2009, but is not saying where he will be going. We are not sure, but believe that this is the delay in getting scheduled for Zac's surgery. We have contacted them numerous times, and the last conversation with the secretary -last week, was still no news, but as soon as she can confirm something with Dr. Paley, then she would let us know. I have resolved to wait...it is in God's timing. Mean while Zac has had another pin site infection and is currently on an antibiotic. He also has a cold right now, so, surgery may have to be delayed anyway. We would love to know how to plan...although I should know by now to keep it one day at a time!