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!!!!!

Loooong Weekend

Alot of things really swimming around my head....how desperate I feel to get a real diagnosis and how ashamed and upset I am to have spent the last 5 months worried (minor anxiety attacks) about my deployment, how Jeff was going to manage the move and take care of my babies while I was gone. I lost sleep and whined and complained (sorry Dawn, Janice, Jolie) incestantly. I feel like God is teaching me a few lessons right now, thats for sure. Either way I am attempting to stay positive--had a mini break down today and got pretty angry with Him. After my mom's death I stayed mad at Him for almost two years...He was waiting for me though:) I know He is going to be right there for us through this, I have to keep my faith! THANK YOU Susan Taylor for stopping by today---although you were speaking for "alot of people" (Rgr wives), I heard the sincerity in YOUR voice. I am going back to work tomorrow. Its going to be hard trying to stay afloat and manage the way I want to and how I am used to. Although I didn't want to leave the kids I am bitter about not being able to deploy and be there for my guys (deployed). Not to mention my "adoptive" boss is deploying and I know he would be very supportive of me here at home. Holy cow, God has something in store for me!!!! I am actually laughing...until tomorrow morning at PT...blah! Signing out for now....Love to all. In Strength, Jenn

Good morning all

Before I start this morning I want to thank my friend Redawn in Germany, my all time favorite CMSgt (and closet Rock Star) Michael, and Kim for refusing to let me be negative this past week...you all had your own unique way of dealing with me...THANK YOU and I love you....and to Jenn for knowing I needed a hug, a couple of them:) Okay so as you know I was leaving for Iraq tomorrow. I moved alot of stuff out of my house and into my friend Sherry Shultz' new place so that I would have a home to live in when I got back from Iraq. Today Jeff and I will be making a few (more) trips to go pick my stuff up. The owners of our home had put our house up for sale and before we got Zac's diagnosis I tore the house apart in prep for Jeff's move and subsequent sale of the house. Thank God Jeff is staying so we are being selfish (despite how much we really like our landlord) and hope that our house doesn't sell. I will spend Z's nap time putting a little bit of the house back together to affect some type of normallcy. Wish us luck in being able to stay here and in finding a new care provider for Zac...another BIG challenge for us having to go back to work next week. Our friend and Zac's current care provider, Jenn Ryan, has already accepted a new position because she knew we were moving:( How CRAZY is this...Jenn is going to work for the same AMAZING doctor (pediatrition) who initially caught the curvature!!!! Life is..."funny"...I have to keep faith that God will continue to send us another wonderful care provider. Any local friends, if you know of anyone please contact me as soon as you can, thanks! Love to all. Happy Saturday. Jenn

Welcome to our...well my (Jenn) Blog...Jeff will catch on soon:)

Ok so most of you know how freaked out I have been over the past week...I wasn't up for chatting. Call me a cry baby...I was crying non stop. I figured this would be a good medium to keep you all informed...despite my inability to type or spell....let me start at the beginning: I took Zac for his 2 year "Well Baby" Check on the third week of April. His pediatrician Dr. Harsha physically felt a difference between the left side and right side of his back..left side feels thicker. She mentioned scoliosis and told me she would refer him to X-Ray and to the Ortho clinic. It took 2 weeks to get him into X-Ray. I pretended to fly around the X-Ray room like a helicopter to get him to stay still for his images...oops TMI:) Fast forward a week and I left for predeploymnet training in NJ. When I got home last week...Jeff had only returned from his deployment days earlier..we took Zac in to see the pediatric orthopedic specialist who told us there were concerns with the X-Ray and he wanted a better image. At that point I was only a week away from deploying and Jeff 4 weeks away from PCSing! We let him know this situation and he made it clear I should delay my deployment. THIS PUT ME ON HIGH ALERT!!!! The doc ordered an MRI. When we called the MRI clinic they offerred us an appointment in late JULY.....needless to say I fell apart. We called the doc back and he had us into MRI in 3 days. Our first weekend spent together as a family in a LONG TIME and it was very difficult. On to the MRI...as I left Zac with the anesthesiologists :( they told me it would be "about an hour"...2 hours later I was a mess...they did what they needed to do by telling us everything was alright but I KNEW at that point it wasn't. Zac fought like a tiger coming off of the gas but recovered well. He was asleep in my arms when we waled up to the ortho clinic to ask the doc how long it would take to get answers on the images. The doc walked by us in the waiting area and invited us back to his office where he accessed the images. With his two residents present, he explained to us what the dark spots on the spinal cord were.."masses". I broke down after counting 5 "masses". The doc was so "typical", poker faced. His young resident was very quick to point out that not all masses are cancerous. I so appreciated his compassion and information at t hat moment. Jeff was so good...he stayed focused and asked all the questions we needed to know to prep ourselves for the future. Ultimately we got a referral to Seattle Children's Hospital. Fast forward 3 days...lots of phone calls to our hospital and Seattle Children's, lots of paperwork to fill out and several trips back to our hospital to get copies of all the images and radiologists notes. Yesterday we got a phone call from the ortho doc who told me that although his two colleagues (tumor specialists) confirmed the spots on the image are tumors, he also consulted with a pediatric neurologist who disagrees...he things it's pulsating or circulating spinal fluid and that is what is causing pressure on Zac's spine and in turn causing the curvature (scoliosis). Not knowing what this REALLY means, I want to assume this theory is better....doesn't it just SOUND better? I JUST WANT TO GET TO CHILDREN's so an EXPERT can confirm what is wrong with my baby! This is where our journey is at...the official request from our hospital through our insurance company to Children's has been sent. HOPEFULLY I will get confirmation by Monday that they received our case. Unfortunately it will take 3 days to process...for the neuro nurse to review the case and consult the doctors....then determine the urgency of our case. Right now Zac is the PICTURE of good health...my man is wild (THANK GOD). So far he has no impairment of any gross motor skills nor slurred speech..he says "NO" and "Spider Man movie now Mom" as articulate as the Queen of England...with an American boy attitude of course:) So THIS is a blessing and also is an indication of the urgency Children's will place on our case...the intake staff told me there are other children who are experiencing severe symptoms and pain...SO SAD! Either way I just want Zac to be seen SOON so he doesn't get to that point! SO...between now and the time Children's schedules us to be seen, the Army neuro ped's doc is going to conduct tests on Zac and he also is ordering another MRI (Grrrrrrr...frustrating, more anesthesia and radiation) BUT its to identify any potential masses in the brain. PLEASE SAY A PRAYER FOR US....please say a prayer for us! As soon as I get our appointment to Children's I'll post it and any further info from the neurologist will be posted too. Before I log out of my first entry I want to THANK all those who have called to check on me, make a meal or express concern. This is the beginning of a long journey...I will NEED your help in the near future for sure. Love, Jenn & crew