Saturday, March 7, 2015

BOSTON, the Update and Realities!

Wow!! How time has flown since October, when all of you came together and supported us in the most Abundant and Humbling way! Thank you for loving us and coming around us. And Providing financially and practically for Phoenix to get the best Medical care there is. Pull up a chair and get your favorite drink, this one is going to take time to process and read.

Most of you who are reading this know me first and those whom don't, I am honored that you are here reading about the story of my Family, it is a gift to share and be heard. I have thought about this post for months now, I have written and re written it in my head a million times, attempting to make all that we are processing and all these decisions  more palatable, easier to stomach for me and you. Through tear stained cheeks I had succumbed to not writing, because I knew I couldn't make it easier. It is difficult our life is hard, living on this side of eternity with huge LIFE changing decisions for our children's lives in our hands. And yet, I have learned time is the greatest gift I have to give to others and myself, so I have taken time to pray and breathe and process and cry, and grieve that our son has a long difficult road ahead of him. Time has given me the gift of Peace and Grace to hold to the Road ahead being walked hand and hand with a God who knows me and Phoenix and all the LONG twisting roads ahead and the BEAUTY, Inspiration and Faith his little life will give! So here I sit on vacation with the time and energy to finally get it out.

 In November we traveled to Boston Children's Hospital to get a second opinion on a Spine surgery for Phoenix, you can read about that in the previous post if you want to know more. We had 9 specialist appointments lined up in 3 days and it was a whirlwind FULL of a Completely different 2nd opinion and so much heartache and thankfulness, that I can still cry at the very thought of it.

Let me just start by saying we were Absolutely BLOWN away by the level of care there. There were so many seemingly little things that were Extraordinary compared to the care and fights we've had to battle for a low quality of care in the medical world. When we arrived at the hospital our first day, we were taken back by the details of the Hospitals layout and the way they truly thought about the Children and their siblings and family. There were interactive opportunities in every hall way and waiting rooms that were peaceful but intuitive.

They have a media center, with a theater and art room for patients and there visitors, 3 restaurants with in the hospital with healthy food options. When you live at a hospital for a week or more with your child the only thing that keeps you sane amongst the long sleepless nights ( think someone coming in your room every 15minutes -1hr for vitals or rounds...) is eating healthy and a REAL cup of Coffee in the Morning. This was mind blowing for us. And we could truly value it because of the years of experience without these Great options.

We made our way up to our first appointments, as I checked us in the lovely, kind man made a phone call and I saw on Phoenix file there was a post it note that read, Call Morgan upon arrival. Within 5 minutes we were meeting the Coordinating nurse whom had been in contact with us for the last 6 months. This IS BEYOND UNHEARD OF, she personally came out and took the time to greet us and chat with us before our appointment. That was exceptional and the BEST part was she First stopped to introduce herself to Phoenix, Not us the parents!! Instead, Phoenix the patient, NEVER EVER has this happened, in 6 years of the medical world and 3 children whom deal with multiple specialists. Mike and I looked at each other and smiled, our sweet boy was not a victim in this place but a real patient whom deserved recognition and respect. We were elated. You see, part of our role as parents is to train Phoenix how to talk to Specialists and Advocate for himself, so that when he turns 18 and we as parents  have no say, he can feel confident and comfortable asking questions and advocating for himself. That will never happen if Dr's don't show him respect and build a relationship with him.

Our appointments on this day included the 2 biggest ones,  an Orthopedic Surgeon and Neurosurgeon. These are the 2 main Doctors of the Spinal Surgery. First, we met with the Dr. Warf, Phoenix's Neurosurgeon, He was so Humble, kind, and honestly Warm. He took time to get to know us and asked about Phoenix siblings (and again talked with Phoenix), this doesn't happen at all. He encouraged us and said we were exceptional and brave parents to care for special needs children. He shared with us that him and his wife had one child with special needs and that was the hardest road they ever walked.

I cried, for so many reasons, to be honored and respected by a Neuro sturgeon (whom tend to be some of the most unhumble and abrasive specialists) unraveled me for a moment and I realized how utterly unheard  and uncared for as a parent, I felt in the medical world), Actually instead, we are often treated as insane for continuing to have kids beyond Phoenix and quite honestly I go in with a very Strong face to not have my heart hurt with the level of disregard I have experienced from day one with the medical world. In this appointment Highlighted a heartache that I have lived with and processed with God and embraced for many many years.

Onto the Appointment side of things, Dr. Warf said he would defer to the recommendations of the Orthopedic surgeon as his part of this 12 hours surgery (we thought we were going to have there in the months to come) would be only 2 hours and has to do with untethering the spinal cord and making sure spinal nerves and all that jazz are secured... CRAZZY Right! He said he would see us at our next appointment and was so happy to have met us! WOW!

Our 2nd appointment was with the Orthopedic Surgeon Dr, Karlin. I was bracing myself for this one as I knew it would be the hardest and the Orthopedic specialists are usually the most difficult personalities to deal with. They generally have 2-3 other nurses, or other medical voices to help them communicate what they are saying, again brilliant surgeons, but poor poor people skills. This appointment was when our Ideas and WORLDS got rocked. And it has taken me months to wrap my mind around it and still I can cry, when I think what it will all look like.

Dr. Karlin, greeted Phoenix first (seeing a trend yet) asked him how he was and took a minute to allow him to talk about the YouTube video he was watching. ARE YOU KIDDING ME, this was too much to believe. Such a  little action to so many so HUGE to me as a Momma, watching again my child be acknowledged and time taken to know him. Dr. Karlin then laid out his Opinion/Plan for Phoenix, He talked to us about a 3 Step process that will span over the next 6-7 years of Phoenix life.
It is called the VEPTR here's a YouTube video that I highly recommend watching if you want to understand this Road for us and pray well I will not lie and say it is easy to watch, but I would love if you are a part of our life, you would, so that I don't have to try and explain the details of it over and over again.

There is honestly so much more I can say about Boston, it was an Amazzing experience on the medical side of things and we are absolutely 100% in knowing that Boston is the BEST for Phoenix. Some of the details I am leaving out but that rocked my world was a Dr. who oversees all of Phoenix's care and ensures every specialist is in the loop with one another (THIS HAS NEVER EVER HAPPENED OR EXISTED IN ANY MEDICAL CARE WE HAVE had) that equates to Mike and I communicating between 9-12 specialists to make sure they all know what's going on and usually they still are not on the same page. This Beautiful Dr. sat with us for 2 hours and got to know us, asked us about our family and support and all the REAL life stuff of a Special needs family. It was Incredibly redeeming. Then there was the Plastic Surgeon who walked with us to get us an appt. that day with a World Renown Dr. for bracing for Phoenix, and they got us in! So many more incredibly God favored moments with people who really cared. I was in AWE!

The intensity of this trip and and all the details of my heart that took a long time to accept and process the heartache of this road. I never ever dreamed I would have to watch my child go through 12 surgeries in 6 years, and that it would be the BEST option for him. This seems just so insane and a bit overwhelming most the time, so I have to take it day by day and appointment by appointment. I struggled for so long in the medical world with how much Fight it takes to advocate for the Best for my children, to walk into a place and be FULLY supported, FULLY heard and Fully seen as a Mother who cares, has been an unraveling and tear filled process. I didn't ever dream I could let my FIGHTING guard down and have a team of Specialists care deeply with me for Phoenix life to be the Best it can be here. 

What I will close with is this! We need your prayers, Love and Support, this will be yet another LONG road for our family. There is always one thing that Mike and I hang onto in these process’ of challenge, logistics, heartache and fight. It’s our relationship with God, he carries us through collectively and individually. The weight of the decisions we’ve had to make for Phoenix these last months has required every ounce of Faith we have to remember that we’ve been trusted with these Life changing Monumental decisions and we can Trust that we’ll follow peace in every decision.

On a final note: here are a few things pertain to Boston and with the other Reuwer darlings, I don’t have time or energy to go into detail with, but would love for you all to at the very least know and pray about:

Rowan: Our STRONG< ROOTED MIRACLE. As all these decisions and chnges come, pray for his ever growing loving compassionate heart to know how to process his heartache for his siblings and to keep LOVING LIFE as he does so WELL!


*shortly after Boston, Phoe had a Neurophychsiology test done and the results were game changers in the road ahead of education for him, and whats the best fit… This is sooo loaded on so many levels, so please just pray for wisdom for us.

*Penelope; Has been showing signs of immunology needs that have gone UN met; so we are in the works of more testing for her and trying to keep her healthy and get more follow up care involved that really hears our concerns as parents. (this is hard here in Milwaukee, because she is such a mystery child and none of the pieces seemingly fit together, so we are fighting to get everyone on the same page and help us help her the BEST we can)

*Genevieve: sweetest little doll girl! She will need a hip surgery which will require a intensive 2 leg cast for 6 plus weeks. She is a 2 year old and this will be a Long 6 weeks for all of us. We have waited and waited and waited to do this surgery and really need to know if it’s best and IF the timing is now. The Dr’s began telling us when she was 6 months, this would need to be done and it’s again loaded with details as to why...but we have waited and prayed and hoped we would not need too. But we are here again with worsening issues and will need to make decisions for scheduling and timing soon.

We are Enjoying eachday together amidst thr trials and are so tankful to be given the Great and HIGH Honor to love thes darling as Huge as we can. Mike and I are a great team and are both finding outlets for us to process and LIVE this life Well and Enjoy it! 

Thank you for Reading and LOVING US!!! WE ARE GRATEFUL!!

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