Monday, December 3, 2007

Random Information

These first few picture are of just Zachary (well there is one thrown in with me). He will be turning 5 in a few I'm kind of focusing on him a little more. Abigail will have her turn in a few weeks. These are more Christmas pictures than anything else really. It's so expensive to take them anywhere to have them done professionally because I can't just pick one pose...I have to have them all and they have to do 6+ poses ya know! Well, I don't know where to begin with Zachary. He is our miracle baby!!!!! I don't think there is a day that doesn't go by I thank the Lord for sparing our little guy. I have all week to explain but it would take much longer I'm sure so I'll 'try' to condense things. Zachary has Craniofacial Dyssynostosis (Yes, I have actually learned to say that word :P) which is a rare malformation syndrome characterized by lambdoid and posterior sagittal craniosynostosis and dysmorphic facial features. He has a nevus flammeus on the glabella and on the nape of the neck. Also, bilateral partial soft tissue syndactyly of the 2nd and 3 toes on each foot. He has type I Chiari malformation with tonsillar hernation and a serpiginous venous anomaly if the left paracentral region. At 13 month old, he developed increased ICP (Intra Cranial Pressure)and had a ventriculoperitoneal shunt placed. 2 1/2 months later Zachary had bilateral hernia surgery and 2 weeks after that underwent a 15 hour cranial vault reconstruction with fronto-orbital advancement. Believe me, that was one nerve racking day! The doctors were pleased with the outcome but did advise us that in the future there may be more surgeries to come. Almost 2 years later that dreaded day came. Zachary became sick one weekend with flu like symptoms and was admitted to the hospital for observation. An ICP monitor was inserted into the head to monitor the pressure and this is the problem started. The first surgery they performed was a revision of the shunt. Zachary's ICP level were running in the 70-80's. Normal level for a child his age is 0-10. The shunt revision brought his level down to the 20-30 range and the dr's didn't feel he was out of the woods enough. The began to prepare us that we might be facing the 15 hour surgery again. 3 days later they did perform that surgery. Again the surgery was a success....ISN'T GOD GOOD! As the drs were talking with us after the surgery and explaining again what was done the one dr expressed to us her concern the night before. She said she had a restless night thinking of this surgery. Because of all Zachary has going on with his little head, she strongly felt he may not make it through the surgery. One area they need to get to they are unable to because of the malformation. We were able to witness to the dr's. Of course, again, we cannot be guarantee'd no other surgeries. We keep trusting the Lord! So as you see, Zachary is very special to us. (Not that Abigail is any less special) Zachary is beginning to realize some of what has went on with him and has asked questions. As his mommy, this has been a little hard for me having to 're-live' this but I think he needs to know these things. One thing that makes Zachary unique with the syndrome is that usually children with Craniofacial Dyssynostosis are mentally disabled, have physical disabilities etc etc BUT Zachary has NONE of those. There are only 2 known cases of children such as Zachary, him being one of the two. Zachary is EXTREMELY active & EXTREMELY smart. We would not trade him for ANYTHING!!!! God definitely has a plan for his little life. It does his mommy's heart wonders when he stands in church on his own and says "I LOVE JESUS"....mommy ALWAYS sheds a few tears .... sniff sniff Well, now that I've written two books, I will close for now. Of course, I have not included everything but we would be here the next 2 years LOL. Well, hopefully this will help some of you understand a little more of Zachary's condition. He is our miracle!!!! Mommy loves you Zachary!


The Finished Product

Abigail hanging ornaments

Zachary hanging ornaments

Children are PRICELESS!!

Even got my hubby to help! Must be he wants something for Christmas :)

Our puppy, Cuddles

Such a wonderful poser....


urhis said...

Happy Birthday, Zachary! Such a grown up little guy you have become! Grandma & Grandpa loves you and Aunt Naomi, too.

Anonymous said...

hi there little zachary is absolutely gorgeous! I am so glad i have found you my daughter amber is coming up 3yrs old and has craniofacial dyssynostosis with short stature, my email is and would really like to get to know you all, as the condition is extremely rare support is non exsistant
look forward to hearing from you love to all your family
love nessa xxx

Blog Archive