Still waiting....specialists may not be so "special"

We saw Doctor #2 2 weeks ago, a pediatric ortho doc at Seattle Children's--very nice guy. However he wants us to see a spine surgeon because he believes the 2mm syrinx in Z's spinal cord is CAUSING the scoliosis and believes if the syrinx is "decompressed" it may correct the scoliosis. That involves invasive, painful surgery and that scares me to death. I torture myself with the "what ifs" surgery goes wrong...I won't go into that here. I am still trying to keep positive. So, we left our second appointment withe second specialist with a different treatment option and a new referral. Back to Seattle on 4 August to see Special Doc #3. I am praying he doesn't believe cutting my baby open is the best option at this point. I am sure at some point in his life surgery will be inevitable, and I won't think it is a good time/idea...but I am still dealing with the shock of it all. On a more positive note...I am consulting with the Shriner's Hospital in Salt Lake City Utah as there is a doctor there who does a serial casting method we are interested in. It is a alternative treatment that TriCare (our military health insurance) won't cover and we will incur bills for travel and time out of work..but if the doctor there will take our case we are seriously considering it as a treatment option. For those who are interested in reading about the procedure visit the ISOP website. The coolest thing for us is that the hospitals care coordinator put us in touch with another Army family RIGHT HERE ON Ft. Lewis who is traveling to Salt Lake for this treatment. We called them, got together for dinner and heard their brave and scary journey down this scoliosis path. Their boy is almost 3 and is in his 5th cast with AMAZING improvements. Their little guy has had a ROUGH start at life and is much worse off than Zachary but he is thriving. We are so blessed to have had that opportunity to meet them and get tips on how to deal with the military medical system and how to travel best to/from Utah if need be. So until I update in August after we see the spine surgeon please keep positive thoughts and prayers going for us and pray for baby Broadie on Ft. Lewis!!!!

Relieved...a little bit...not really sure what to feel...

I am crying...happy and sad...had our MRI this week and just consulted with the pediatric neuro specialist. He compared the original films to the new films taken Tuesday morning and I am happy to report the brain and spine are CLEAR of any neurological deformities...NO TUMORS...NO BLOCKAGES IN THE BRAIN. However, we do have a definitive diagnosis: Syringomyelia. Syringomyelia (SM) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the cord. Since the spinal cord connects the brain to the nerves in the extremities, this damage may result in pain, weakness, and stiffness in the back, shoulders, arms or legs. Other symptoms may include headaches and loss of the ability to feel extremes of hot or cold, especially in the hands and disruption in body temperature. So...those are our facts. The syringomyelia, however slight right now, is not causing my little guy any pain. I am going to need some time adjusting to this diagnosis. Still feeling very (personally) overwhelmed and sad that this is what Zachary's life is going to be about. I did learn when all this came up last month that, yes life DOES go on and I just have to take each day as it is given to me and to accept that God has His plan for us and will carry us through it. No Mom ever wants to think her kid is in pain--THAT, is what is eating me up. In the mean time--we still need to deal with the Infantile Scoliosis (IS) diagnosis and are going to see another specialist (a peds ortho specialist) up at Seattle Children's. He/she will have to determine if Zac's scoliosis is Progressive (IS) or not and prescribe Courses of Action for us. Hopefully we can get an appointment before too long as Jeff's school is on hold and he feels very anxious about how his leadership will interpret/react to this news. Its hard for me not to react emotionally to this knowing the sacrifices our whole family has made for the military but again--I'm trying not to project, keeping it in the moment and GRATEFUL for the support, love and prayers of all our friends, family and others. I'm not up for chatting--need to work on accepting this...will get there and will return calls and e-mails shortly. LOVE and THANKS to all. J, J, K & Z-Man