follow-up post poned

We get to postpone our next follow-up with Dr. Paley until Sept. 8th. We are relieved by this as James will be starting Jury duty next week. Zac is still experiencing quite a bit of pain and is on the pain meds around the clock. It seems as though he was done with the meds by this time on the rt. leg. It is a blur to remember those days. I am really looking forward to a drug free baby!

Zac is already scooting on his bum! He has been really good at this, especially with one leg bent and the other in the brace. We were unsure how he would do this after the surgery with 2 straight legs. Well, he thumps his leg with the brace, and pushes off at the same time. Although he is slower than before, he is doing it! He is rolling as well.

We met with Zacs therapy coordinators today, and an assistive tech. rep. It is always a challenge to come up with new creative things for Zac. Although, most of the time he figures it out himself. We are looking into ideas for eating with utensils, and bathroom needs. I don't think that we will do much potty training until after the surgeries, even though he is showing signs of readiness. That is going to be a challenge that I can put off for a while!! What we discussed today involves the transition from the early intervention to formal education. They actually start doing IEPs (Individualized Education Plan) at this point of transition(when they are 3yrs,) even if they do not start school until they are 5 yrs. This just seems overwhelming right now thinking about the educational process and all the challenges that it will involve, including the social!! Ok, one day at a time....big sigh. For now he is an amazing 2 yr old, who does not seem intimidated by any obstacle that comes his way. He teaches me so much, but I am slow to learn!!!

Dr. Paley was extremely happy with Zac's leg when we saw him on Monday. He said that this leg went much better than the right leg had gone. I think some of it comes from learning on the first one, as well as a difference in the size of the leg due to growth. All looks good. We are back for another follow-up on Monday, Aug 25th.

Thank you for all of your prayers, we are so grateful!!!

We are leaving tomorrow for Zac's follow-up in Baltimore. He is still experiencing much pain, although they increased the amount of Roxicet that we can give him, and that seems to help. He is actually scooting a little on his bottom already, and rolling around. I don't think that it is going to hold him down-much. We will let you know how our visit goes tomorrow.

Home from surgery

Dear friends and family,

We are home again! We made it home Saturday evening. Zac was released on Friday. We have experienced another true miracle as Zac has a very straight leg. It really is just as the right leg was, only larger due to growth. Dr. Paley was very happy with the outcome of the surgery. He said that it went better than the right leg in part due to the growth in the bones, as well as the knowledge he had gained from the first leg. The anesthesiologist said that Dr. Paley was so proud of himself that he was making everyone (in the OR) nauseous!-) We are just thankful that God led us to such an amazing surgeon.

There are some definite differences with Zac this time around. Being 2 yrs old and frustrated, as well as being heavily medicated is not the best combination! The pain management is a much bigger issue as well. Zac is at his max with Roxicet, and we are assisting that with Valium, and he still complains of pain. We have also given him Benadryl to help him to relax. Please pray for the pain to subside, as well as proper healing.

We are happy to be home, but need to return for a post-op visit on Monday afternoon, Aug. 11th. Zac will now have follow-up visits for the next 6 months or so, every 2-3 weeks. We are trying to work out the logistics. We are considering a program called Angel Flight; which are volunteer pilots who fly their aircraft (usually small 4 seater planes) -at their expense, for individuals with medical needs. This makes me a bit nervous...but it may be our best option.

We are so grateful for all of your prayers, cards and e-mails. They mean so much to us as we face these surgeries.

We give all praise to our heavenly Father who is so faithful to continue working in our lives, and for "making a way," when we only see the impossible!!

Gratefully,

LeAnn, James, Cai, and Zac

e-mail 7/30/08

Hello everyone,

Just a quick note to let you all know how Zac is doing.  He's had a rough day
with pain management, but at last call he is finally sleeping.  Part of it we
feel is that because he is older and more active now that he is trying to move
like he is used to and he can't (because of the fixator) so there is pain, but
also frustration.  We were able to take him down to the playroom in a wagon
today and he seemed to like being out of bed.  In fact, when we brought him back
to the room he didn't want to get into bed so we put him back in the wagon and
he napped for a while.  LeAnn has been staying up there (there's nobody like
mommy!) but he has been calling for Cai and me at times to be there too.  He
misses being with the guys!

We haven't heard yet about release date or anything.  Most likely tomorrow will
influence it, if they can remove the epidural and how he does overall with pain
and therapy.  At this point, though we are ready to go home, we are not anxious
to leave until he is ready.

Here are a couple of pictures too, some before and after.  I selected them
somewhat in order, but in case they didn't send that way the one where he is
wearing a "hat" is actually something a nurse tried to keep him from reaching
his lines and pulling them out.  That was right after he was discharged to a
room.  The one in the wagon is the most recent from today.

Still a long way to go, but not as far as it was!  Thank you all for carrying
us, and continuing to carry us, to our Lord.  Every prayer makes a difference! 
We know/feel/believe it and Zac does too!

More to come...

James 

e-mail 7/29/08 #2

Just heard!!

Dr Paley came out and said it is finished.  Zac is still in the O.R. waiting to
go to Recovery so we can see him, but is resting comfortably.  He said it went
smoother than the last time and is actually better than the first surgery was. 
He has the same style fixator but doesn't have any pins inside his legs and he
has secured the cartilage so it shouldn't move this time.  He is very pleased
with the results.

The anesthesiologist also came to us and told us how things had gone smoothly on
her end.  He's doing great.

We are rejoicing!!  More to come...

James 

e-mail 7/29/08

Hello everyone,

So far, so good.  Thank you all for your prayers so far and for the ones to
continue to carry us through.  Zac went in this morning about 7:45am.  His
sinuses are drying though he did have some drainage during the night and he had
a recurring "tickle" cough.  We have felt the power and strength of being lifted
up by everyone and felt comfortable (though still having parent's anxiousness)
about today.  One hurdle we were able to breathe easy about was the
anesthesiologist is the same one that canceled the second attempt for
cough/sniffles thinking it was viral instead of allergies.  We understand it is
better to err on the side of caution, but we have also been told she is a very
"by the book" doctor.  She listened to his chest and said all was clear and we
were a go so we were pretty excited.  We feel that by Zac being able to get by
her it is another sign that it is his time! 

About 9:30 one of the patient coordinators came out and told us things were
going well and they had no complications at this point.  We don't know how long
it is going to take; basically it will be done when it is done.  3 hours was an
estimate we were given but the coordinator told us that was the minimum time and
I am writing this already past that window, so we wait.  We have patient, at
peace, hearts at this time knowing he is in the hands of Jesus.

We will update again as we hear more.  Keep praying!

James (LeAnn, Cai, & Zac) 

E-mail 7/24/08

ac's surgery has been rescheduled for Tues. at 7:30am. He has a Hematology apt.
on Monday morning.

Please pray that Zac is well. There was a lot of rain the other day and it has
flared up his allergies. He is also coughing from having been sedated on Wed. It
is very nerve racking. We are praying for clear sinuses, and exceptional health!

It has been a challenging week. We are trying to enjoy the down time. It does
give us time to think and to pray. Although difficult to surrender at times. I
have been able to seek my Father and to know that what ever happens will be in
His complete and perfect will. Grace is what I need to face what ever He has in
store for Zac and for us. If there is any thing that I have learned on this
journey it is that "God knows, and I don't, what is good for me." (a Bryan
Duncan song) Thankfully! One day we will know....

Thanks for keeping up with us. I can't believe that 2 1/2 yrs later we are still
doing "updates." It hasn't been just one storm though, just a series of storms,
with some hill tops along the way. We are finding joy in the journey....God is
faithful!

James, LeAnn, Cai, & Zac 

E-mail 7/23/2008

Hello everyone,

Just a quick update on today.  Zac's surgery was canceled.  When they ran his
blood work his platelets were too low.  I think there was a timing issue with
getting him some transfused and him being under anesthesia too long.

LeAnn will send an update later with more details.  Keep praying though, we are
working out details to continue the surgery next Tuesday.

James 

E-mail July 22, 2008

Dear friends and family,

Just a quick note to let you know that we are back in Baltimore and all set for
Zac's surgery tomorrow.  The surgery is at 7:30am, tomorrow, Wed.

We had the pre-op apt. with Dr. Paley on Monday.  He said that he was ready with
a plan for the surgery, that he had learned a few things from the  other leg
that might help to preserve the cartlage, he seemed to be very hopeful for an
even better outcome than with the right leg.

Thank you for keeping us in your prayers as we face this process again.  Zac is
doing well, and seems to be healthy, aside from a busted lip from brothers head
earlier this evening!;) It is a good sign that the bleeding stopped
quickly...the platelets should be in good standing for the surgery.  They will
check those in the morning.  Hopefully no transfusions will be necessary! 
Please pray that Zac will remain healthy through the surgery.  We are a little
skittish after the last 2 times!

Our nerves are ok right now, although it is never easy to face these surgeries. 
In some ways it is more challenging knowing what is ahead.  We have each had our
moments of crying out to Jesus, and so, we have peace now, knowing that God is
in control.  We are also to the point of lets just get past this...

We give God the praise for bringing us to this far, and for the work that He is
doing in our lives.

Thank you!
James, LeAnn, Cai, and Zac