First Grade

Little Philip started first grade this week and is thrilled to have Mrs. Morse.    Our family experienced such a dramatic difference compared to last year at this time!  Last year we were in the midst of moving, preparing for surgery, and still had all of our baby teeth.   This year,  we are settled into our new home, feeling blessed with our good health prognosis, and are less two baby teeth.  First grade activities planned for this year include Upwards flag football, and our most recent addition, Scouting.  Little Philip is a proud new member of Pack 1 as a new tiger scout!

Team Moss in Great Steps for NF

We will be walking as a family in support of our son, Philip, to raise funds to find a cure for NF1. Our walk will be almost a year later from his diagnosis and while we are thankful for a positive check up this year, we know other families are facing difficult challenges in treating this genetic disorder. 

If you would like to join us in support of this effort, please visit our Team Moss fundraiser page at alhttp://www.firstgiving.com/fundraiser/teammoss/great-steps-al

Thank you family and friends!

Summer 2012 Update

Insert "sorry we've not been in touch...life has been busy..." obligatory sentence here.  We are finally coming up for air after what can only be described as a horrific 2011 year.  I'll spare you the details, but in a nutshell, 2011 was physically and emotionally draining on all of us.   We have aged, and gained life experiences no one would willingly accept.   We are Christians, so we found ourselves spiritually challenged and tested as well, leading us to ask lots of "why God?" questions that you might expect.  While the darkness of that time certainly became the focus of our thoughts and prayers, Little Philip's diagnosis came just weeks after our move to a new-to-us home, a new community, and our son starting school in that new community.  Since then, I have pondered the timing of everything in 2011, prayerfully asking what God's will is for me as a mother, and for our family.

Anyone that knows me knows that I appear to have it all together.  I am very good at keeping up appearances, and now recognize that I had started to pass that same trait unintentionally along to my family.   If I ever needed help in the past, I considered it a weakness, something I needed to work through, my "cross to carry" so to speak. What much prayer, spiritual guidance, and time has taught me since 2011 is that such self-reliance is not God honoring and not at all what God's plan is for me.  God encourages us to be in a community of faith, to be encouraging to one another in the good times and the bad, to be open and vulnerable with trusted sisters and brothers in Christ,  struggling to come to terms with living in a fallen world.  In 2011, when my life was being completely turned upside down in more ways than can be shared here, God made it absolutely impossible for me to remain an island unto myself.   I looked awful, felt awful, and acted awful and there was no way to hide it this time.  Friends and family forced me to be less self-reliant, to accept help, prayer, and support.    What I came to recognize is that God's grace is freely given to me if I will accept it, and that He works all things together for good.  If I was truly accepting of His grace, I would have recognized these friends and family members as examples of Him supporting me when I finally admitted that I was a mess.  I am working on continuing to accept this grace but as a 37 year old woman who spent a lifetime building up self-reliant behaviors, this is going to take some time.

To be utterly reliant on God for peace and grace in my life means letting go of my controlling thoughts and anxiety for my family.  I am working to develop the kind of relationship and communication with my children that encourages them to be broken with me. I want them to be open about their fears, sadness, and bad decisions or behaviors with me without fear of judgment or shame.   There is nothing they can do to remove my love for them even if I disapprove of their decisions or actions now and in the future.  Their sweet innocent  hearts and minds at age 7 and 4 cannot comprehend the brokenness that they will undoubtedly experience in the world.  I cannot protect them from it all.  I want them to know that they do not have to have it all together all the time.  And so, with the joys that life offers us and the sad times that come as well, I seek to be a real mom, a real person of faith, so that my children will draw their strength from Christ rather than from anything this world has to offer them.

With Philip and I working in higher education, we mark time in academic years rather than calendar years.   We are embarking on the 2012-2013 year, ready to support our little ones as they start 4K and 1st grade.  We also look forward to welcoming our respective new students to our respective campuses where we work.  We begin this new year with a renewed perspective on faith and life that we are confident will bear spiritual fruit for both ourselves and those around us.

Update on Little Philip

Happy to report that Little Philip's MRI showed no evidence of tumors in his brain! He does have some tumors in his neck, in the same place where the tumor was previously removed but Dr. Rutledge says that they are superficial and are not threatening. So, we will leave them alone since removing them just makes them grow back. We are so thankful for all the prayers and thoughts of all of our family and friends. We have really felt your love and support these past few months. So what happens now? We see Dr. Rutledge every six months from this point forward to monitor any changes in his current tumors, or any other new growth or concerns related to his Neurofibromatosis Type 1 diagnosis. He will have another MRI in another year to make sure there has been no tumor growth in his brain. Dr. Rutledge says she has about 200 pediatric clients and she can name 15 of them. All the others are routine visits with no complications other than what initially resulted in an NF1 diagnosis. So our prayer now is that we will be one of her 185 clients for the rest of our son's life. Thank you again!

Merry Christmas 2011

Make a video - it's fun, easy and free!
www.onetruemedia.com

More Surgery and Update on Little Philip

Helen had her tonsils and adenoids removed this morning, marking our third family surgery in less than twelve months.  She came through like a champ, and is resting comfortably in her mom and dad's bed right now.  We know the next week will be rough, but we've allowed plenty of time for cuddles, extra attention, and patience as she fully recovers.  We hope this will help her sleep through the night since she never has, even in the womb!

In other  news, we did hear back on Little Philip's test results today which confirmed that he does have Neurofibromatosis Type 1.  We will be scheduled to see Dr. Bruce Korf in January to learn more about managing this condition in our son.  He will have a brain MRI to rule out any major concerns or, at least, be aware of any concerns that may need to be addressed.  Again, there are far worse diagnoses we could have been faced with as parents, so we are trusting in God's timing and plan to help us discern how to approach this as symptoms present themselves in throughout his life.  He is a perfectly healthy little boy, incredibly smart, with the biggest heart you've ever experienced, and the best friend any kid could possibly have.  

Little Philip's Surgery

Little Philip had neck surgery on September 12th, where an ENT removed what we thought was swollen lymph tissue that had not gone down in size after over a year.  Some of you may recall that he had a surgical biopsy last December 2010 where the first swollen node was removed.  At that point we were told that the pathology came back as "nothing" and all blood work since we first became concerned about the large size of these nodes has also come back healthy.  

Dr. Woolley, our ENT that performed the surgery,  contacted us in late September to let us know that the pathology results on his tissue revealed a neurofibroma benign tumor.  This kind of tumor is not malignant but is a nerve sheath tumor that can indicate a condition called neurofibromatosis.  Dr. Woolley sent us to meet with a pediatric geneticist that next week.

Due to the confirmation of the neurofibroma tumor in his neck, as well as the observation of several cafe au lait birthmarks, we were sent to Children's Hospital to complete the blood test that provides a 95% accurate diagnosis of either NF1(Neurofibromatosis 1) or Segmented Neurofibromatosis .  Dr. Robin, our geneticist,said that it is highly likely that we will receive a positive result that Little Philip has one or the other of these.  If that is the case, then we, as parents, will be tested..  If either of us test positive, then they will test Helen as well.  

The good news - we have ruled out Neurofibromatosis Type 2, which has more severe complications since the tumors with this disorder tend to show up on the brain and spinal cord.  We are thankful that this is not the case for our son.

Also good news, no matter where you are in the country, the blood test for NF is sent right here to Birmingham in the genetic lab we visited today.  We are blessed to live in the city with the best NF specialists.  

Bad news - We will not know the results of the blood test until the middle of November.  We are seeing an ophthalmologist in mid-December to examine Philip's eyes for lisch modules  on the iris (benign, do not affect the sight, but are indicative of NF1 so this could further confirm a diagnosis).  .  

Since most NF1 and Segmented NF patients lead a completely normal life, many not even aware of their prognosis, we are praying for only routine tests that reveal nothing of concern.  I won't bore you with the details of how NF could develop of the course of Philip's life but in a nutshell, grade school and the onset of puberty are when NF complications can arise so right now and at puberty will be the times we will be closely monitoring him for any growth in tumors that could be the cause of learning disabilities, cosmetic disfigurement, etc.  We are trying not to let our minds go to these scenarios.

Despite the uncertainty, we are thankful to God for this prognosis.  When we received the initial call from Dr. Woolley, there are much more terrifying things that he could have told us.  We have friends who have received such a terrifying phone call and our heart goes out to them.    Big Philip and I have drawn closer in our desire to be faithful in our relationship with God.   We have wrestled with questions, doubts, fears, but ultimately rested in the peace of knowing that God does not make mistakes, and that He has a plan for our son to prosper, not harm him (Jeremiah 29:11).  We continue to be prayerful and vigilant as we wait for the blood test results and be the "normal" family we always have been (some of you have met other members of our gene pool and should be laughing right now).