12 Down, 12 To Go!

It’s been a while since we updated the blog, so for that I apologize.  We find ourselves updating Facebook so frequently these days, but know that many of you follow Tristan’s story here…so without further ado let me update you on our brave little man.

Tristan is now 7 1/2 and in 2nd grade and he is now approximately at the 1/2 way mark of his journey.  We switched last April from VEPTRs to growing rods.

This was a difficult transition, as the removal of the old and placement of the new were done in the same day and included a cadaver bone fusion.  The recovery took quite a bit more time, but our champ once again pulled through.  However, again Tristan had some superficial infections (what seemed to be our new normal) that then required a clean-out surgery at our local hospital here in Michigan a few weeks later.

Due to the bone fusion Tristan was restricted on activities from April - November.  It was difficult asking him not to ride his bike for several months and to restrict him from running and wrestling.  To say that Tristan was elated when the restrictions were finally gone would be a great understatement. 

As of December, Tristan had his 12th spinal hardware surgery and the 1st of the growing rod expansions.  Becky requested that the doctor try a different stitch-up procedure this time.  Previously the stitches were dissolvable and were causing irritation post-op in an area with tremendous scar tissue.  Becky asked if external stitches were feasible and the doctor agreed to try it. Tristan had ZERO redness, irritation or infection and all I had to do was snip the stitches a few weeks later.  (Don’t worry a family friend who is a medical doctor also came by and looked at the site.)  It was a wonderful thing to have a surgery go so smoothly and see Tristan bounce back so quickly.  We know this is all due to the vast amounts of prayers that accompany Tristan on this journey and a God who graciously hears our call.

Next surgery is scheduled for August 3rd in Philadelphia.  The doctor is trying to push Tristan an extra two months this time (normally we go every six months.)  We are slightly nervous as to how uncomfortable this will be for Tristan, but trust for another uneventful procedure.  We will again post on Facebook and here to let everyone know his situation.

We also wanted to let you know about an amazing fundraiser event that some friends have put together for Tristan.  As you can imagine, Tristan’s surgeries are expensive. Fortunately, the insurance does pick up quite a bit, but with the surgeries out-of-state we don’t qualify for Michigan’s medical insurance for children with special needs.  This means quite a bit comes out of pocket, in addition the travel expenses (airfare, hotel, and food) adds up quickly in a major metro-city that is why this event is so helpful.  Click on the link below if you are interested in getting involved in this great day to celebrate our brave boy. 

Family Fun-Raising Night with Tristan West


We know so many of you pray for Tristan on a regular basis and ask that you please continue these prayers and also encourage you to share Tristan’s story with those who need a faith boost.  We know without a doubt that our Lord has guided each step on this journey.

God Bless You All,

Adam West (Becky, Addison, Tristan, and Emerson)

Our Four Days Before the Surgery

Well, it can’t ever be uneventful apparently.  We got to the airport over two hours ahead of our flight, which I checked multiple times on our itinerary.  We checked our baggage and then the airline representative said, “Your flight leaves at 7:44 tonight.  You’re all set out of gate A27.”  The wife and I looked at each other then back at the airline representative. “What time?”, I asked. “7:44pm, sir - five hours.”  So….I show her our itinerary showing we leave in two hours.  Apparently, the airline cancelled that flight about three months ago, and bumped us to the next flight.  That would have been nice to know earlier in the day.  So after killing five hours at the airport we left “right on time” for Philadelphia, PA.  

We arrived late, but this time we had a rental car so we were able to get into the city easily with no issue.  We woke early on Friday morning for the typical x-ray, doctor consult, bloodwork, anesthesia appointments that are part of our pre-op half day.  All went well and we were walking out in record time.  We were able to check-in on Friday at the Ronald McDonald House, which had the kids beyond excited.  In addition, the Gregory family (five and one on the way) from Charleston, SC was coming up for the weekend to do a little sight-seeing and give Tristan some pre-surgery support.  

Saturday morning our family along with our friends took a drive out to Valley Forge (only about 20 minutes from the city.)  We walked the sacred ground and endured the Wife’s history fascination for a good two hours out in the hot sun.  I now know more than I ever cared to know about the encampment of 1777-78, please feel free to test me.  After a few shots (that’s a revolutionary war play on words for you) of the families with canons and replicated cabins we were off to lunch.  Becky wanted to go into Amish country for an “authentic family style meal.”  That didn’t work out….so we went to the King of Prussia Mall and ate at CPK (California Pizza Kitchen.)  

The Wife (if you know her, you are aware of this) likes to “woo” people. (This means she talks to everyone.)  You can tell when she is “wooing” because the pitch of her voice goes up and she pretends she is southern.  I think it’s endearing and apparently so did the regional manager at the CPK who after hearing that we were in town for Tristan’s 9th spinal surgery took care of the check for our party of 11! So here is my plug for CPK….go there….they do really nice things for people.  Seriously though, how amazing and it just shows how at every turn God blesses us on this journey.

Sunday morning we went downtown to attend Christ Church.  It is the church that George Washington and a whole lot of other famous people that Becky told me, but I don't remember, went to worship.  After service we met the Gregory’s for a little more time together and then said goodbye to them as they headed home.  Since we were “already downtown” we (meaning The Wife) thought we should get tickets to see Independence Hall with the kids.  These tickets are free so I could come up with no reason why we shouldn't see the “Historic State House of Pennsylvania” (see I listened to the tour guide.) I think Addison and Tristan enjoyed it and it gave Becky a chance to “woo” another Park Ranger with questions.  Enjoy a few shots (hilarious…I used it again) of our sight-seeing below and certainly check out the city of Brotherly Love for yourself…as it is pretty cool.

Valley Forge Cabin

The West and Gregory kids at Valley Forge

Valley Forge

Valley Forge

Independence Hall

Tristan Rockin' his independence.

Where the Declaration of Independence was signed.

Barry must have been important.

Christ Church (did I really need to type that?)

We Did It Again

We posted that we were on our way to Philly and then didn’t tell you what happened.  Tristan had surgery in December and came through “just beautifully” in the words of the wife.  Fast forward to May 2014 where he has now finished up kindergarten and is prepping for the next surgery on June 2nd.  It is going to be more invasive than normal as they are replacing the two VePTR rods.  We’ll be posting more as we travel there, but we know as always that God goes before us….just as the good shepherd in Psalm 23.

Check out this video of Tristan.

Mishap

It is that time of year again…time for our brave hero, Tristan to travel over yonder land to the City of Brotherly Love, which is Philadelphia.  As always, I am keeping our family of five on track (not an easy to task) so that we can arrive on time to DTW.  

As you are all aware, I am very astute in my planning and always ensure that we arrive within the required “two hour before your flight” timeframe of the TSA.  Well, until today….  I must admit (and this is hard for me) that I might have read the arrival time in Philly, instead of the departure time in Detroit on our confirmation.  Um….yes, you read that correctly, WE MISSED OUR FLIGHT!  I did not realize this mistake until I attempted to check my bag at the kiosk and received an error that it was too late to check my bag for the flight.  “What?!!!” So, I stomp over to the customer service desk and Bernadette explains that we have indeed missed our flight.  (INSERT: blood pressure rise here.)

I look out of the corner of my eye to see Becky’s face go pale.  Considering that we were flying on donated sky miles from Children’s Miracle Network, I begin to feel a drip of sweat on my brow.  The thought crosses my mind that this Christmas we might be spending $3000 on airfare because of my…well, we’ll call it “mishap.”  

Becky attempts to woo Miss Bernadette in desperation as she pleads with her for assistance. “Oh, no! Our son is going for surgery and these were donated miles for our family to get there.”  The desperation is clear and it is more than clear to onlookers that “this guy messed up.”  

Bernadette begins looking at options only to find that the next flight to Philly is booked solid.  (INSERT: blood pressure rising higher here.)  Perhaps, Newark is an option? No.  Wait.  No.  Wait, there is a late Philly flight, but Bernadette has to call the “powers that be.”  I wait with a strange liquid filling my eyes, clearly brought on by my now sense of panic.  My wife (who I do tend to give a hard time in this blog) calmly walks over to me, hugs me and says, “Things happen for a reason.”  I look at her, unable to speak, how can she be so calm at a time like this?!  She goes back to managing the kids, as Bernadette waits on the powers that be to decide our fate. 

After what seems an eternity Bernadette thanks the person on the other line of her phone and hangs up.  She consults with the other customer service representative next to her and assures me that she can help get us on the 8:15pm flight…with NO service charge.  Praise the Lord and a huge thank-you to Bernadette and Delta Airlines.  She begins to work her magic behind the desk.  After the final boarding passes are printed and my blood pressure begins to lower slightly, I hear the kids and Becky ushering huge thanks and assuring Bernadette that she has “saved the day.”  I have to roll my eyes as Becky asks Bernadette for a quick photo op with her and the kids.  (Gotta love that wife of mine!)

Now, we sit at Detroit Metro and await the arrival of our plane.  We should arrive in Philly around 10pm, we’ll need to grab the luggage, get on the train and manage the streets of downtown Philly to get to the hotel.  However, after the start of this trip, the rest should be a cake walk.  

#7 Complete

Surgery seven is now behind us and we forge on with our brave hero, Tristan.  The surgery was successful and had no hiccups.  The surgeon was able to get quite a stretch on Tristan this time…in fact he is about 3/4 of an inch taller.  He definitely felt this surgery more, as he has been a little more prone to rest on the couch than normal for him.

 

Our trip home was smooth, well except for that six hour delay at the airport with three kids.  We now have to stay “high and dry” for the next few weeks as Tristan can’t go in the shower for a week, can’t go in the tub for two weeks, can’t go in the pool for three weeks and can’t go in a lake/river/pond for six weeks! 

 

We are ever grateful for all the thoughts and prayers that you all give, and forever thankful to Our Lord and Savior for walking with us every step of the way.  We have so much to be thankful for and hope that Tristan’s journey is a faith boost for all you.  Join us in December for surgery #8.

 

God Bless,

The West Family

7th Surgery Trip - Day 1

I’ve been married for 8 ½ years now…and I love her, I really do. However, it is her goal to push me to insanity. For those of you who have been following the blog for some time, you know that Becky insists on making us walk from the train station to the hotel on our Philly trips. Well, except for last time…December 2012 (mark your calendars, folks) she let us rent a car and avoid walking all together. So I thought I had finally broken her…NOPE! Apparently, the reason we rented a car last time was because it was winter and too cold out for the baby. Now, it is June and “a little humidity and rain”…that’s right RAIN “is NOT a reason to use the services of a taxi.”


Let me tell you how it went…we left for the airport and due to my very astute planning we arrived at the airport within the required “two hour before your flight” timeframe of the TSA. Hooray…one point, Adam. We make it to the gate, board, and arrive in Philly right on time. Hooray…three more points, Adam. We pick up the one checked suitcase (that’s right let’s cram as much as we can in one bag…so my clothes can be wrinkled all week, but save $$$) and we get on the train in record time. Hooray…two more points, Adam! We get to our stop on the line and begin walking to the hotel with three kids, a suitcase, a carry-on roller bag, a diaper bag, three backpacks and the “retro metro” (for all you Thirty-One fans) bag. We brought the double stroller so Emerson and Tristan are riding along and Addison who is a real trooper on these trips is walking merrily with us. Then….drip….drip….and then downpour! Ugh.

So then the question is to hail a taxi or not…insert witty comment from Becky, “It’s a warm rain.” We walk….or trudge…I think it was trudging on my part. Now, Becky did have me pack one umbrella…so Addison is covered and Emerson has the little stroller cover…so at least the girls are dry. Tristan is holding a bag on his lap, so he only gets his head and shoulders wet. However, Becky and I are soaked to the skin. One nice man (who didn’t realize I was with Becky) offered to walk her to the hotel with an umbrella over her head….incredible, but she sweetly declines.

We drip into the hotel lobby and the hotel tells us that our room isn’t ready yet…(did I mention Ronald McDonald House couldn’t squeeze us in?)…so we hang in the lobby (soaking wet) for forty minutes until we can go up to our room.

In our room, we change into dry clothes and decide to walk to the bookstore and grab some dinner from the “Wawa.” We get caught in another downpour this one with winds strong enough to invert our umbrella. However, some nice man (a different one) offered an umbrella to Becky, so now we are all soaked this time…but own two umbrellas. So I guess Becky gets a point for that.

After the second drenching, we enter the hotel lobby and find a superfluous amount of people in said lobby. An alarm is sounding and emergency strobes are flashing. We are wet and in the lobby again while a “false alarm” gets cleared by authorities. (Apparently, it was the second false alarm of the day.) We settle in for the night and then at 2:49am the alarm and emergency strobes are flashing again. A computerized voice is telling us to make our way to the nearest emergency exit. We throw on flip flops and grab our wallets and the kids - out the door in less than 20 seconds. Poor Addison is dazed and confused but walking down the twelve flights of stairs, while Tristan is attached to Becky in a monkey grip, and I am holding sweet smiling Emerson.

We wait outside with strangers (also in their pajamas and one person oddly, wearing only a robe) until the alarms stop. I realize that I forgot the room key in the room (I think I lose a point for that) so we wait in the lobby again for the crowds to clear and for the front desk to get back to their normal activities.

We are back in our room by 3:30 and the big kids go to bed pretty quick. Emerson settles back down by about 5am…and the alarm goes off at 7am to get ready for the pre-op day at the hospital. Whew…day one is done…day two will clearly pale in comparison (I hope).

Superhero "Tristan"

An Update on Our Superhero, Tristan!


For those of you who have been following us closely with Tristan’s surgeries…his last surgery went very well in December 2012. He took a few weeks away from preschool and went back in full swing by early January 2013 after a great family Christmas holiday. He enjoys school, his teacher and friends. He has been doing so well at school and has really taken an interest in learning more and more. He loves to sing and through little catchy songs he has mastered a lot of material in the last few months. He also just recently graduated from Preschool and will be starting Kindergarten in the Fall.  He is so excited!

Tristan was “adopted” by the Rainbow Connection a year and a half ago. This is a charity for children who have special medical needs in Michigan. They grant a big wish to the “wish child” (Tristan picked Disney World last April) then after the big trip they send out tickets to local venues, as they become available. Tristan enjoyed a day at the International Auto Show in January, and recently a day at the Grand Prix on Belle Isle.

Tristan listening to the driver of car 55, who also is named Tristan, at the Detroit Grand Prix.



The family enjoying the day at the Detroit Grand Prix. Minus Emerson of course.  Those cars are very loud.

Medically, the last six months have been quite relaxed. Tristan’s nephrologist has given another three year clearance, as his solitaire kidney is doing wonderfully. Tristan stopped his weekly physical therapy appointments at the hospital center because he had hit a plateau. In order to keep him limber, we placed him in swim lessons, which he LOVES! He has been working so hard on moving from level three to level four, although arching his back to float is really tough for him. Hopefully, this next surgery doesn’t set him back much…as he has to stay out of class for approximately a month.

Tristan’s next surgery will be on Wednesday, June 12th (Tomorrow). We expect great things on this journey and thank God for his enduring grace and mercy. Your prayers and support are so appreciated and are such a blessing on our family and more importantly Tristan’s life.