Happy Birthday Zac!

I can't believe our little man is turning 6 years old!  I will post more later...but for now, he is doing great, and is walking well!

Moving right along!!!!

It has been so long, and I am not even sure that anyone will read this note! Just thought I would stop in and write a quick up date. Time away means that we are busy with somewhat "normal" everyday life and blogging is the farthest thing from my mind. My neglect of this blog means that others miss out on some of the amazing things that we get to see everyday. The things that we get to witness on our front row seats of God's work. Just last night was one of those moments as I was putting Zac to bed he said "I am glad that God made toes for us to wiggle." I quickly agreed, and said we do need to be thankful for our toes, not everyone has them. Zac wanted to pray right then and there to thank God for his toes, he also prayed for those who do not have toes that God would give them toes! Zac has no idea how close he could have been to not having those toes! It was an overwhelming moment for us, we are thankful once again for leading us to Drs. who would be so skilled in preserving Zac's legs and toes! Thank God for toes!!!

I wanted to shout from the roof top a few months ago as Zac starting taking his first steps and in the past few months walking and now almost running, and even dancing on his feet. Not sure why I did not post then, just busy I guess. The walking has taken sometime, but I can surely say, Zac is now walking, and we give praise to God for this miracle!!! I will post video soon.

We had a return visit to Dr. Paley right in the beginning of the walking. We thought that surgery would be scheduled for Zac's right ankle at that visit. The decision was made to wait, and we will not return to Dr. Paley for a year. This decision was based on the fact that Zac uses that turned ankle to get up and stand. Moving the position of his foot may be a mistake and work against his mobility at this time. We have taken this as direction for now, a year may give us different answers, but as for now there will not be any surgeries this year.

Big brother Cai has turned 7 yrs. He is an amazing big brother, who is sensitive and loving, yet strong in his own right. We are so proud of him. Zac will be turning 5 this month, and will enter Kindergarden this fall. Time is going by so quickly! It is great to be on this side of some very challenging events in our lives and to be able to look back and see how God, many caring people, and lots of prayers have seen us to this point. God is good!

High Point Enterprise article 7/16/2010

Help for Zac: Church fundraiser assists boy's family with medical expenses

by Jimmy Tomlin

18 hrs ago | 110 views | 0 | 1 | |

SPECIAL | HPE Four-year-old Zac Snider, born without arms and knee joints, can operate a video game joystick with his feet.

slideshow

LEXINGTON – At age 4, Zac Snider invests much of his time in the same things as any other boy his age – video games and superheroes, for example – but he’s not just another 4-year-old.

What’s different about Zac is that he was born with no arms – his hands protrude from where his shoulders are – nor with knee joints.

The condition stems from a rare genetic disorder called TAR syndrome – short for thrombocytopenia and absent radius. Thrombocytopenia means low platelets in the blood, and absent radius refers to the missing forearm bones that are characteristic of the disorder.

“He’s able to walk with a walker now, and he uses his (power) wheelchair,” says Zac’s mom, LeAnn Snider. “We’ve also moved (from Archdale) to Lexington, and he has much better access in this home.”

As he has grown, Zac has learned to use his feet in some instances to compensate for not having arms. For example, a feature article in the Enterprise three years ago told how Zac, then only 8 months old, could play his toy xylophone by grabbing the mallet with his toes.

Today, it’s the joystick of his video games.

“He has a video game that he can play with his brother (Cai),” Snider says. “He plays with his leg braces off and moves the joystick with his feet.”

Zac continues to progress developmentally. He hasn’t required any major surgeries recently, though he may need surgery soon for his right ankle, which turns outward at a severe angle.

“We go back for a checkup in August, and we’ll find out then,” Snider says.

In the meantime, the Sniders’ church – Mount Zion Wesleyan in Thomasville – continues to support the family financially to assist with ongoing expenses.

On Saturday morning, for example, the men of the church will sponsor a pancake breakfast fundraiser for the family, with plates selling for $5 apiece. Donations will also be taken, and live entertainment will be provided by the Barry Ball Singers.

For more information, contact the church at 472-4239.

jtomlin@hpe.com | 888-3579

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Read more: High Point Enterprise - Help for Zac Church fundraiser assists boy s family with medical expenses

Another blessing

We have been blessed lately, to be able to move into a house that is one level, including a flat level entrance. Although not yet settled, and trying to clear the fog from the move. We already notice the difference in caring for Zac, and that the one level-open floor plan allows him to go anywhere in the house as he needs.

We are also thankful that we are able to sell our house (still in the process; under contract).

Currently working on some changes to Zac's braces. This has been more of a challenge than I thought it would be. Really, Zac needs to return to Physical Therapy...just have to work it all out.

January 1, 2010

It is hard to believe that we are entering a new year, yet this past year has seemed like two years rolled into one!

We entered 2009 with Zac only having completed 1 of the 3 surgeries on his left leg. He was still wearing the fixator. On January 13th he had the second major surgery which was very successful! As a result Zac now has a knee that is able to bend at about 70* (90* is a sitting position), Dr. Paley first thought that we might get 20*! The fixator was then removed in March, and he was fitted with new braces. He is now able to stand and walk with assistance! It has been awesome to see this miracle played out before us. Just to look back and see his bent legs, and to see them now, is amazing.

James was able to find a job which he began at the end of February. This is a big praise! All of the travel, insurance premiums, and lack of income has been difficult...but God has met our needs each step of the way, and we are so thankful for how He has worked in our lives. He has also sent some amazing people into our lives as we continue on this journey.

Zac received his power chair in May. This gives him a great sense of independence when he gets a chance to go as he pleases...or as Mom allows!

Cai started Kindergarden this fall. He is doing well, but we are still working out the joys and struggles of homeschooling. He is so good with Zac. They do have their times of being typical brothers, but for the most part these two guys are best buds! We are very proud of Cai and the boy that he is becoming!

Zac is developing in his own ways, including a personality that works for him! What I love is that he is determined to do things himself. He also does not have any trouble communicating his needs, or wants. I am convinced that God gives these kids extra measures of grace including their personalities. All I know is that he is teaching us a lot along the way....

We continue to progress with Zac, he has a walker on order, that he has tried and can maneuver quite well. These things just take a long time to get. He just received another set of new braces. These are more advanced and durable. Hopeing to give him the stability and mobility that he needs.

We will be back to see Dr. Paley in Feb. for the next follow-up visit. It is our hope that all is good for now and that there won't be any more surgeries...at least for a while. Zac is on a 6 month follow-up schedule with his surgeon.

We are anticipating great things for 2010!!! What ever happens, we know that God is in control...and has a plan beyond our imaginations. He has seen us through every step of the way and He gets all of the praise!

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!