Should I be worried that 2 doctors at our military hospital and 3 doctors at Seattle Children's Hospital didn't catch the two NEW disorders that our "second opinion" doctor (in Utah) told us about on Friday???? Seriously?! So the phone call I was waiting for anticipating some treatment options ended in a diagnosis of Spina Bifoda Occulta and a tethered spinal cord...which means he can't treat Zac for the scoliosis until the cord is untethered!!!! THAT IS SURGERY:( Jeff won't even talk to me about this because he refuses to get upset about a prognosis that doctors can't agree on. After our tumor scare, I understand but....so back to "square one"...asking our specialists to REVIEW the MRI/X-Rays to confirm...or deny (I hope) this new diagnosis! What sucks is that if the new Doc is wrong...do I want him to treat Zac??? His reputation is amazing....okay, one day at a time. Put in a telephone consult to Seattle; average time to hear back is 2 weeks. LOVELY. In the meantime we have an appointment on 26 Oct for genetics testing another X-Ray. Am so sad and frustrated! If Zac has this tethered cord, he will start manifesting symptoms with the next few growth spurts. Not sure how docs determine when surgery is "appropriate". I know one thing, this patience God is giving me WILL NOT last if my baby is in pain!

Getting there...I think?

Saw attending (senior) spine guy in Seattle today. I was very assertive with him..he handled me well and Jeff didn't get mad at me so it was win/win:) Doc told me he will "compromise" with me ...wants Z back in October for a new X-Ray. That way he can compare the films to see if the scoliosis is progressing..makes sense right (moms of kids with PIS hold back)...yeah..this makse as much sense as watching a ticking bomb to see if it's going to explode! Doc said he didn't want to prescribe treatment options yet..says it may be premature. WOW! I was actually taking it all in stride until he ordered genetics testing to rule out Ehler Danlos Syndrom or Marfan Disorder (connective tissue disorders). This is the second of the 5 doctors we've seen who have mentioned this. Definitely up for ruling out these painful syndromes! Still a bit shell shocked. Taking it as it comes and being grateful it is not worse. The halls and waiting areas of the Children's Hospital are full of pediatric cancer patients and kids with major physical disabilities/deformities. I am humbled each time I pass through the doors of that facility. Please pray for the mothers, fathers and care givers of those children! Before I sign off...one more note...I sent all of our medical records to Salt Lake City Shriner's Hospital; they are one of seven hospitals in the US that perform a special casting for infants/toddlers with scoliosis . Their doctor is on vacation but I should hear back from them by late next week. It would be a time consuming out of pocket expense but we are ready to make that committment for Zac-Man:)

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

Guardian Angel!!!!

Its taken me almost two weeks to really process this and I want to share this story ....the evening we came back from the hospital after we got Zac's initial diagnosis I was changing his diaper when he said, "angel". THANK GOD Jeff was standing there because he would have never believed me...or better yet he would have acted like he believed me but thought I was crazy. Okay, so he thinks I am crazy all the time but HE HEARD HIM SAY IT TOO! I immediately broke down in tears and said "Zachy what do you see" and he said, "angel mommy". Thank you all for your prayers...I know Z has a guardian angel watching out for him...I like to think it's Nana:)

Almost Friday...yeah!

I just want everyone to know that Zachary is not in any pain and hasn't vocalized any discomfort to us. That has been and continues to be my one true blessing! Will provide updates after our appointments in July!

Better? I think ???? so!

We met with the Army's pediatric neurologist today. I "feel" better but still no concrete answers. The Doc was really good with Zac and conducted a very "hands on" exam. He doesn't believe the MRI showed tumors but instead agrees with the peds radiologist and explained the image as "ghost images"---CSF that was moving at the time of the scan and captured the movement as what may appear as a mass. I want to believe him but all I hear is the first doc telling me what he and his colleagues had found on the images...tumors. Either way..two positive things today...all neurological tests revealed no obvious symptoms of the degradation of Zac's brain function and or gross motor function. Also we got an appointment at Seattle Children's. Granted, it's not until 7 July (MRI) and Doctor's consult on the 9th of July:( I was preparing myself to have to turn to another medical facility to get the timely answers I NEED but I had a reassuring conversation with the neuro nurse practitioner at Seattle. She read the initial case and is sure a month will not be detrimental to Zac's health. In the meantime, I am positive I will not sleep well until we get the second MRI and the Doctor at Children's meets with us to compare the two images and discuss treatment options. According to the Army peds neuro we met with today he thinks there may be a blockage in Zac's brain causing the pressure in the spinal column (causing the curvature). He said Zac may need a shunt em placed in the brain if this is the case. Obviously I don't know much but even THIS sounds more promising than attempting to eliminate multiple TUMORS from the spinal column. Sooooo much to process, holy cow! So here I am ---TRYING TO BE POSITIVE. I am sure the next 4 weeks will not be easy, waiting for the visit to Seattle for the next MRI. My goal is to enjoy my boy, his boundless energy and enjoy the month of June...only one of two months that is REALLY nice in this state:) For the locals following this--try to remind me of the "enjoying my boy" part when you see me peeling Zachary off shelves in the PX, off the floor as he is throwing a fit because I won't give him any candy in the commissary or off the slide at the park when he doesn't want to take his Terrible Two ass home:) Jeff got great news too...he will stay in his current unit until we get our diagnosis from Seattle and prepare for a treatment plan. That is good so that we don't have to deal with THAT change too! Okay--so before I sign off I want to THANK THANK THANK all of you for the prayers...I am CONVINCED our prayers are working!!!! God is present here with us and the Blessed Mother is watching out for my baby boy! AMEN!!!!!