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!

x-rays done...waiting for review

We were finally able to have Zac's x-rays done today -locally. They have been mailed off and we are awaiting the review, and if he is ready for the next surgery. I was thrilled today that Zac was such a big boy and did not even cry! He is normally terrified of the x-ray machine, and having his legs held down. Today the technician spoke to Zac, telling him exactly what he was going to do, when he was going to do it. I think there was actually a connection with this guy. Too bad this guy isn't in Baltimore....!

Hopefully the x-rays are good enough and Dr. Paley will be able to have an answer for us by the end of the week.

Next surgery coming, but not yet scheduled

I've been waiting to get the date for Zac's next surgery, but we have not been able to narrow it down yet. It seems that the clinic is having some difficulties with the schedule.

At the last follow-up on Sept. 29th Dr. Paley said that it was time to schedule the surgery to align the bones and to do the knee reconstruction for the left leg. We were looking at the last week in Oct., but at this point it is doubtful that it will be that soon.

X-rays were done on the right leg (the first leg that was done last year), but when we asked about it, Dr. Paley just said that he looked at the x-rays, but he just wants to focus on the left leg for now. We are uncertain what that could mean, and what he may not be telling us, but we will go with that for now. If you will remember the Right leg is already shorter than the left leg; this may mean that there is a problem with a growth plate.

Please pray with us for the orchestration of the surgery, the physical Therapy that will change after surgery, and for continued provisions for our travel, and monthly expenses. Also, for continued strength through this process.

Thank you!

Back to Baltimore

The Save A Limb ride is Sunday, and Zac's appointment is Monday. Looking forward to it. We do have a concern that the antibiotic is not helping with the pin site infection. Please pray that we can get rid of this infection!

Prayer request

Please pray for this young man who posted on our TARS support group last week...

Please pray for me,
i don't know how to explain this but here goes....last Sunday i went
into the hospital because i saw bruises on my back. thinking that it
was apart of my TAR syndrome, i went in.....they told me that my
Platelet count had dropped to 59,000...then a few days passed and it
dropped to 56, 53 then to 50...it held at 50 then jumped back up to 68
then to 54...during all of this they had my blood sent off to be
tested....on the day i was being discharge the hemo Dr. came sat down
in front of me and said, in a low voice...Mr. Goss i have bad news, we
got your test back and i'm afrade to tell you but you have
T-lymphoblastic Leukemia. this is a cancer of the blood....i'm 29 and
scared for my life...i have two path...take a year of kimo or in four
months you'll die...you can't even begin to imagine what i may be
going trough....my mind is a mess and my nights are long and my days
are short..

~Derek

Please pray that Derek will find peace with God, will have comfort, and healing. Derek has authored some videos on youtube, under the Derek Goss show. Please pray with us...

Thank you.

E-mail Update for 9-8-08 follow-up

Zac's follow-up visit was almost a week ago, but I am just now sitting down to write the update. I know part of it has to do with some disappointing news, but, I will start with the good news. Zac's left leg, the one with the fixator is doing really well. The x-rays revealed that we are almost done moving the bones down, they are almost even at this point. Just a few more weeks of turning, and then we will be scheduling the surgery to align the bones. Dr. Paley is really pleased.

The disappointment that I spoke about has to do with Zac's right leg. It is noticeably shorter than the left leg -already. When we addressed this with Dr. Paley he explained to us (for the first time) that the growth plate had to be split -along with the bone, but, he had hoped that it would not be damaged. After the initial surgery on that leg, there was a nice ball of cartilage, however, when they went in to do the alignment surgery, the cartilage was missing! This all happened after the break in the Tibia, which may be the reason that the cartilage came off. (Dr. Paley corrected this problem in the left leg, so, there should not be the same issue with that leg) Therefore, the top of the Tibia may not be growing. Our initial thoughts were overwhelming, with much concern for further surgeries -including limb lengthening. It has occurred to us that an artificial product may be an option much sooner. We have been told that artificial knees will not be an option until Zac is done growing in order to preserve the growth plates. This area has yet to be discussed with Dr. Paley, but we are hopeful that God has another plan. Please pray with us that we make the right decisions regarding his Right leg, and that we are made fully aware of our options, and the best solutions.

Our next visit will be Sept. 29th. We are hoping to go up a day early to attend the annual Save-A-Limb ride (www.savealimbride.org -September 28th). These Dr.s do amazing things for so many people!!

Thank you for continuing to follow our story, and for all of your coveted prayers!!!

LeAnn, James, Zac and Cai

Zac is doing much better with the pain management. He is however, on the second round of antibiotics as it was apparent that he was once again infected. The pin site infections are VERY common. The antibiotic is pre-prescribed so that we can have it filled whenever we see the first signs of infection. It is so nice to finally be off of the heavy med.s, and have Zac very close to the Zac that he was before the surgery. He is often frustrated with things, but what 2 yr old isn't. He is scooting on his bottom again, almost as fast as he did before. He can reach things off of the floor much better than he did before as he has better balance, and his foot is not in his way anymore. All in all things are going well. We return to Baltimore on Monday Sept. 8th, hurricane permitting!

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 

Surgery Tues.

Zac'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, 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!

Surgery canceled again

Zac's surgery was canceled again today. He was back in the OR, and sedated; however his platelets were too low to perform the surgery. We were under the impression that if this were the case that they could transfuse, and then do the surgery; however this surgery is about 5 hrs, and the transfusion would add too much time to the amount of overall time of sedation. Dr. Paley opted to cancel the surgery for today! We are so frustrated as this is the 3rd attempt for this surgery as the other 2 times Zac had viruses at the last minute. We are hoping to reschedule for next week. Please keep us in your prayers through yet another emotional roller coaster, and trying to keep Zac well. It does not make sense to us, as all the knowledge that we have points towards needing to have this surgery and soon. We are not sure why there have been so many obstacles, but we are still believing that God is in control and only He knows the bigger picture. It makes it challenging to have complete surrender, but we know we must. It also gives us hope knowing that there is a bigger picture, and that God knows best. Please pray for grace as we wait, again! Thanks, LeAnn

please pray for Spencer

Please pray for one of our little friends. Many of you may have checked out his web site before, www.Spencerhawk.com . This was posted on our support group site that Spencer is in surgery and it is taking much longer than expected. It looks like the leg they are operating on may need to be amputated. They had attempted to straighten it a few months ago, while at the same time they amputated the other leg. There were complications with the first surgery, but this time they were going to put an external fixator on it, however they have lost circulation in his foot, and may not be able to save the leg. He is in California, and has a different surgeon than Zac, but it really hits home! Please, please pray for this little guy. He is now 7 yrs old, and is very similar to Zac in that he has the shortest arms and fused knees.


Thank you all!

Amazing!

The following was posted on our TARS support group today from Ethan's mom; he has always been an inspiration to us. Ethan is a 17 yr old high school senior with the shortest arms like Zac. He also had fused knees at birth, so you can see why he is such an inspiration. (even as TARS is very rare, shortest arms and fused knees is no more than 20% that have TARS -Dr. Paley said Zac's condition has no less than 1 in 1 million births) It is awesome to have the internet, and to be able to connect with other amazing kids with the same conditions! We actually recently found a little boy who is 5 who's knees are fused in exactly the same way as Zac's with the shortest arms. Dr. Paley introduced us, and called Zac and this little boy twins. This little guy's parents are also considering the same procedure as what Dr. Paley did for Zac! What is even more awesome, the procedure that Zac had done has never been done before, and Dr. Paley created it; now someone else may benefit from what he learned with Zac. Sometimes I just get so amazed by this journey!!!

The Multicultural Journalism Workshop drew to its close yesterday
evening after two intensive weeks for the 20 junior and senior high
school students who experienced working with some awesome
professionals from the fields of print and broadcast news. At the
presentation ceremony the students got to show off the fruits of their
hard labor, a newspaper,a radio broadcast, and a television news
broadcast. Now here is the very most awesome part....Ethan was
awarded the top college scholarship which will be determined to be
from $10-$15 thousand! We are so proud of him!

This may have been a life changing experience for Ethan. He loved
everything about it, waking early to meet for breakfast at the
university cafeteria to review the previous day's work with his
instructors and peers, working on story interviews on the phone and
out in the field, learning how to write a lead, having his stories
edited, and working late into the night on the newspaper layout. We
hired a personal attendant to come in the morning and evening to help
him with assembling his prosthetic leg, and other than that he was
completely independent. It was good for him and for his dad and me. I
think we all grew a lot from the experience.

Chris, Ethan's Mom (17 years old)

e-mail update for 6-21

Hi all,

We are excited to announce that we have another date for Zac's surgery: July 23rd, the pre-op apt. is July 21st. Zac is doing well, and does seem to be healthy, with some allergy issues. Please pray that he will stay well through the surgery. This is the third attempt to start the process on his left leg. Dr. Standard has been named as the attending physician this time. We don't think that this makes much difference as he has been involved in all of his other surgeries. Dr. Paley will at least be available, if not working along side of Dr. Standard. Please pray for these men as we prepare for this major surgery.

It will be one year ago on July 17th that we started the surgery on his right leg. All is well now, he is in a full leg brace, and is starting to weight bear, and walk in a walker. I don't think that he will completely walk with the walker until both legs are straight. We think that he will be able to that even with the fixator on his left leg. We are getting ready to order a power chair that he should have by the time he is 3 (the process takes a while with paper work). Zac turned 2 yrs in May. He is a typical 2 yr old! He and Cai are great buddies one minute, and typical brothers the next.

As you pray for Zac, we ask that you continue to pray for us. We are facing decisions, and need direction as far as employment. We have both been looking and interviewing, but nothing has turned up yet. James continues to take classes with ECPI to complete an Associates degree in Technology in the spring, and then a Bachelors with the accelerated program in the fall ('09). We do not have clear direction as to relocate, and/ or to sell our house, but we may soon have to make that decision. We feel strongly that what is best for Zac is to continue with the surgeries, especially as we have the right leg completed, it is the sooner the better for his progress. As we keep up with Cobra, we do not have anymore deductibles until September, so if we have the surgery now, it is 100% covered. We are seeking God's direction in all of these things, but at times the silence is deafening. We also know that it is a difficult time for many people, we are not alone. God has blessed us with many caring individuals that pray, and that is where we are at. We feel that He uses our situation, and we give Him the glory in all things. He has supplied our needs in so many amazing ways, we know that He will continue to do so. It is in our human that we desire to know the when, where, and the hows, and not to mention the whys. Because He has been so faithful, and because we love Him, we continue to trust, and believe. We know that He is in control.

We are so grateful to each of you. We look forward to sharing good reports about Zac's surgery.

For those who have prayed for our dear friend Lenni, she went home this week. Her new room was completed. We are thankful to know her, for her life, and for her faithfulness. We give God praise that her son and daughter came to know Jesus as their own savior the night before she passed. Please keep her family in your prayers.


Thank you,

James, LeAnn, Cai, and Zac

A friend goes home

My heart is heavy tonight as we say good bye to a dear friend. Lenni went home today. She has suffered from a rare cancer for several months. The last week has been difficult and she was on her way to her earthly home today with hospice called in, and instead went to her heavenly home to be with her beloved savior.

My heart rejoices with her as she told me several times that if the treatment did not work she would just beat the rest of us to be with Jesus. She is in love with him and has an amazing faith! She has been one of our faithful prayer warriors. I will miss seeing her face each Sunday morning as she served the rest of us coffee in the back of the sanctuary. I will miss hearing her amazing wisdom as she would share in our Sunday School class. I will miss hearing her poems, and beautifully written words.

When Lenni learned that she had cancer she shared that she had been praying that God would use her as a vessel for Him; she believed that through the cancer, He was answering her prayer. She also added, "when you pray in that way, you have to stay in The Word."

Lenni loved Zac, Cai too. But with Zac, she said that she wanted to write an article about all the lessons that she learned from Zac. I don't know if she ever wrote it. I hope so. When he was an infant we never took him to nursery for fear of illness, so she always played with him in the back while she attended the coffee shop (at church). One of the other reasons that she connected with Zac was that she announced that she would be a grandma for the first time the same Sunday we announced that we were expecting a baby (Zac). Her grandson is about 1 month older than Zac. She also watched our boys one time, so James and I could have a date.

I was honored just 2 Sundays ago to experience another act of her generosity. Lenni found out that it was my birthday, and wanted to surprise me with a party in SS class. Even as she was not feeling well, she was still thinking of others! I was extremely humbled, and honored. I was looking forward to this Saturday though, as it is Lenni's Birthday, and her dear friend had planned a surprise birthday party for her. I thought what a great thing that her act will be returned to her in a wonderful way. I think that this Saturday, we will be celebrating her life in a different way, but celebrating just the same.

It is amazing to see God work through our earthly trials, and to know that He is in control. I believe that God has answered my good friend Lenni's prayer to be a vessel, you see last night both her son, and daughter came to know Jesus as their own savior!

Lenni, I rejoice with you as you are with Jesus, and without pain. Thank you for all of these things, you will be missed! I will be praying for your family, especially your son and daughter who are so new to this faith.


Lenni wrote this to us the last time Zac's surgery was canceled.

What Can I Say?

Dear Snider Family

Our flesh and bone gets so tired of waiting,

We look, we long, days spent anticipating,

Jesus loves me this I know,

Why do answers seem so slow?

Blessed are those that suffer,

How many more blessing needed to make us tougher?

In this fallen world we are helpless,

Thank you for your grace we are not hopeless.

Your journey seems so long,

Consider those that walked in a circle, in a desert, 40 years but not a

strap wore on a sandal thong.

Last thing you want to hear,

Is another hang in there.

We hurt with love for your family,

And pray for a breakthrough openly.

May God bless you with answers to all of our prayers for your family,

With Much Love,

Lenni

waiting

We are still waiting to get a schedule for Zac's surgery on his left leg. I have contacted Dr. Paley's office several times without any replies. Finally, today I e-mailed Dr. Paley to let him know that we are trying to reschedule Zac's surgery; within hours I get a copy of his e-mail to his assistant (of whom I have been leaving messages with) asking her to contact me to re-schedule. Hopefully that means I will talk with her tomorrow. This surgeon runs an extremely busy practice, with patients from around the world, and a full staff of residence that he trains to do the same amazing procedures that he does. He is considered a pioneer in the field, and has developed over 200 procedures himself -including what he is doing for Zac! Yet, he is so efficient and quick when it comes to e-mails. It always amazes me! The first time we contacted him by e-mail to even see if he would look at Zac, we got a reply within 2 days.

Today someone was asking us about the procedures and surgeries on the TARS support group, and as I was answering their questions, I was reminded about what a miracle really happened to have his leg turn out the way that it has. It is so straight, and really looks beautiful. To think that he will walk one day. I am just overwhelmed right now as I write. God has really worked a miracle through the Dr. and team that we found. That is such an answer to what we prayed for and asked so many to join with us in praying. It makes me start to get excited about what is about to happen with the left leg. I know that anything is possible, and I am expecting another miracle!!!

Happy Mother's Day

Happy Mother's Day to all mothers. The following was posted on our TARS Support group. It really touched my heart, so I thought I would share it.

By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care
what sex the baby is. They just want to have ten fingers and ten
toes.

Mothers lie.

Every mother wants so much more.
She wants a perfectly healthy baby with a round head,
rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby
for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first
steps right on schedule
Every mother wants a baby that can see, hear, run, jump and fire
neurons by the billions.
She wants a kid that can smack the ball out of the park
and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't
pronounce,
a spine that didn't fuse,
a missing chromosome or a palate that didn't close.
The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you
didn't see the kick ball coming,
and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months,
even years later,
took him in for a routine visit, or scheduled him for a checkup,
and crashed head first into a brick wall as you bore the brunt of
devastating news.
It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?

There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it
will be unseen,
quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a
day.
How you monitor tests, track medications,
and serve as the gatekeeper to a hundred specialists yammering in
your ear.

I wonder how you endure the cliches and the platitudes,
the well-intentioned souls explaining how God is at work
when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting
you,
painting you as hero and saint,
when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the
motherhood line yelling,
"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in
perspective, so let me do it for you. From where I sit, you're way
ahead of the pack.
You've developed the strength of the draft horse while holding onto
the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July,
counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a
disability.
You're a neighbor, a friend, a woman I pass at church and my sister-
in-law.
You're a wonder.

Not our timing.....E-mail update for Zac -

Well, we are home again. Big sigh! We arrived in Baltimore Sunday night, in preparation for the pre-op apt. on Monday. Zac woke up in the morning on Monday coughing. We thought that it may be allergies as he didn't seam to cough when we were away from the hotel room. I mentioned it at his apt., but the Ortho. folks don't really worry about those things, they leave it up to the Anesthesiology Dr.s to figure out, and we don't see them until the morning of surgery. Zac's surgery was supposed to be yesterday morning (Wed. am), which gave us an extra day for the possible allergies, to become a runny nose and even more of a cough. Yesterday morning we went just to let them make the decision to cancel the surgery. We thought that could be the very possible outcome, which of course was the case. The Anesthesiologist took one look at Zac, and said no way. Even though his lungs were clear, the body will fight against the anesthesia, as it is fighting the cold. Although we knew that this was the possible outcome, it was still a blow. It takes so much out of us to prepare emotionally, and physically with all the travel, etc., and here we are the second time of trying, and we still come home without surgery. It is a bit devastating. I am just going to be honest here, we have more questions than answers. The Dr.s said that we need to wait at least 4 weeks to make sure that he is cleared of the cold. We are really praying for direction. We are thinking that now we need to concentrate on taking care of ourselves, and get some things in order before we are ready to attempt this again. The thing is, there will never be a perfect time. We had thought that the sooner the better for Zac's development. We have tried, but for some reason, it was just not meant to be at this time.
Please pray with us as we make these decisions. It does not make sense to us, but we know that God is in control. I am praying that the next time the scheduled time for the surgery will be the right time, not just that the surgery will be done in the right timing. Most of all that God's perfect will be done. Please pray for grace and strength for us as we emotionally deal with these changes.
We will now focus on the job search, for both of us. We are unsure how all that will work out with timing, and new jobs. I really hope that we will not have to delay much longer, for Zac's sake. To be honest we feel that we are at the end of our rope again, and anticipate how God so often works when we are at the end of ourselves. I heard something this week saying that God helps those who are helpless, and we are all helpless. I think it is when we recognize our helplessness, that God works the best. We love Him so much, and we know that He loves us...we look to Him with anticipation.

We feel compelled to share, as it is for His glory, and how else will He get the Glory, if we do not share. Even as Jesus wept at the tomb of his friend Lazarus, He goes on to answer Martha's questions with this "Didn't I tell you that if you believed, you would see the glory of God?" John 11:40. We believe that God's timing is usually outside of our box, but he still cares about our distress.

Thank you,
LeAnn
James, Cai, and Zac

A lesson learned!

Check out Cai's left foot in this picture. He has been complaining about pain and limping for about a week. There was not a point of injury that we could remember. There was not any bruising, or visible swelling, and so we thought that he strained a muscle or something. Even Zac's PT looked at it and said he must have hit it on something, but that it did not appear to be broken. So, we put off going to see the Dr., until Fri. He was still complaining, and even said he would like to go to the Dr. I was thinking just to rule anything serious out, so we went. The Pediatrician thought there was slight swelling. He ordered a blood count, and x-rays. The blood count he said was to rule out an infection. That immediately took my breath away, as that was the first time I had thought of anything more serious! Thankfully the count came back normal. The x-ray revealed what they called a healing fracture in the Fibula (the small lower leg bone). There was just a small shadow on the x-ray, which they said is the healing much like a scab. Apparently it maybe would not have been detected a week ago if we had taken him in then, and they said that it did not hurt anything by waiting. If he were an adult and/or not as active as he is, they would not have put a cast on him. But, they said to protect him from himself it would be best to wear a cast for about 3 weeks. Most likely it happened from all his jumping. He loves to jump! So, a lesson learned, an injury does not have to have bruising, or swelling to be more serious! I am glad that we went on Fri. as we leave on Sun. for Baltimore. He will blend in there, and look like another patient! --Even with his neon orange cast. (He chose orange, as that is his favorite color)

Our e-mail update for Zac's next surgery

We are getting ready for our trip again! Zac's surgery is scheduled for next Wed., April 23rd. The pre-op apt. is on Mon. the 21st. As you may remember Zac was to have his surgery on March 19th, but got sick in the night right before the surgery scheduled for the following morning. He had the wire taken out of his right leg in clinic, but then we came on home as he continued to be sick, and we would not be able to reschedule right away. Dr. Paley has been out of town (for him that usually means to another country) so we could not get the surgery rescheduled until next week.

Zac had the stomach virus for 2 weeks, we are thankful to be over that! Please pray that he stays well for this next scheduled surgery. He does not get sick often, but if it is a virus, it seems to hit him hard. We are not sure why the timing of his illness canceled the surgery, but we are praying for the right timing, and for God to prepare Zac, and the surgeons. Hopefully this will be just the right time for surgery. It is all in God's hands.
We have the similar thoughts of apprehension, but, also of fresh surrender. It is not any easier, and perhaps it even gets more difficult to place our child in the compromising state of surgery once again. If we keep our minds on the hope of the end result, then we can start to look forward to 'the next step.' There are a few things that get me in the gut, and that is the freedom of not having a brace, or anything on that left leg, and knowing what it will be like soon -as with the right leg. But, we also know that he has no hope of walking with that leg without having the surgery, and it would also be counter productive for all the work that we have done on the right leg, not to do the left. We are just needing to muster up our bravery, and of course rely on God! Big brother Cai, who just turned 4yrs old, learned what faith means through the acronym FROG in Children's Church. When I picked him up he told me to 'Fully Rely On God,' this is another time where God has used our little encourager, as a few times when I have really needed to hear it, I almost audibly replay Cai saying 'Fully Rely On God.'

It should be interesting this time as Zac will be turning 2 yrs old next month. He was just 14m old with the very first surgery on his right leg. He is becoming quite vocal, and is very much a typical 2 year old. Words like 'have it' and 'mine' and 'my turn' have crept into his vocabulary lately (yes, things are getting more interesting around here!) That may make it more challenging in some ways, but he can also express if and where things hurt, so hopefully it will give us an advantage. And so, we are moving forward!

Please pray that the surgery will be every bit as successful as the right leg, if not better. Pray for the surgeons, Dr.Paley and Dr. Standard. One of my concerns is with blood loss, the last time Zac had to have 2 blood transfusions because of the amount of blood loss. It is the right timing for Zac, and we do not feel that we should delay the surgery. We are also praying for employment to come soon as we are both looking actively. Please pray with us in seeking direction as to how God wants to provide. We know that God is in control, and we are excited to see what He has in store. We continue to give Him the Glory, for that is the greater purpose....

We love you all, and thank you for praying and keeping up with us.

Love,
LeAnn, James, Cai, and Zac

Life goes on....

I am not sure why it has taken so long to post again. A little bit of this and that, not to mention, that sometimes challenges are easier to keep to our selves. Anyway, here is a little update since last time....

Our bank account was resolved, and the money returned without too much hardship; Only to have the same thing happen to our other checking account. Our banks both said that it had to have happened at a merchant where a card reader was placed (a small unnoticeable device,) and must have been where we both purchase things, such as a gas station. They said that the card had to have been duplicated in this manner. Interestingly the user was in Mexico for both accounts. We are still awaiting the money to be returned in our second account.

Our little man finally got over his virus. It was a long 2 weeks of vomiting, but thankfully, we are over it! We are now getting ready for surgery again next week. Hopefully this time there will be no delays.

Big brother turned 4yrs old. It is hard to believe! He is growing into such a little boy. This year he wanted a birthday party with some of his little friends. I thought we were going to have a dinosaur theme until he decided out of the blue that he wanted a horse party. It turned out to be quite fun, with 8 of his friends and cousins.

We have a busy week getting ready to leave for Baltimore again.

New on this site, hope to post more soon, and maybe move the yahoo post to this site. I hope to make this site more candid, and a place to share some of the "crazy" happenings along the way. Today was one of those days where the unexpected became the theme of the day, and the boys did not have anything to do with it! Last night I was checking the balances on our main account, when I found some transactions that were not supposed to be there. Upon calling my bank this morning, it appears that someone in Mexico has stolen my account # and has been enjoying some travels on us! A trip to the bank to sign the papers for 12 transactions, and to get cash while they closed my card, took up a big part of the day. I hope that is the end of the head ache; they said it should be resolved in 10 days, with the money back in my account. It was a beautiful day and so we played outside for a while. That said, the mail did not get opened until later (after bu sines hours.) There in the mail was a nice little letter saying our insurance has been cancelled due to my husbands recent job loss. This was unexpected, as we were expecting information on Cobra to bridge the gap between jobs. Well, now we cannot talk with anyone until Monday concerning this, and we have to be in Baltimore on Monday for Zac's pre-op for his next major surgery. I think that once again we are being brought to the point of a white flag surrender! What else can we do, but trust. Zac really needs his wire out, and the other leg straightened. Putting it off does not seem to be an option. I asked James tonight, what do we do? He just said "pray." I was reminded this week that Abraham trusted when he took Isaac to the alter of sacrifice, yet he had to be very distraught, but because he trusted, he obeyed. We are there again with our Isaac (Zac) and apparently not only a job, but insurance, and oh, our bank account, that may be susceptible to theft! The Lord gives and takes away, blessed be His name. We are in the refining fire; as this is not fun, nor are we leaping for joy for trials! Although we are trying---count it all joy....I can't wait to see what God has in store!

Zac's first hair cut

Just a trim, I can't cut those curls off!