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Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Tuesday, July 28, 2015

The Good, the Bad and the Ugly

I believe I had a prior post with the same title… C’est la Vie! 

As promised, a medical run down of our week in Minneapolis.  You’ll know why I separated these posts about half way through it. 

 The Good
Our week started with fasting labs followed by a consult with Dr. Wes Miller, Coleson’s BMT Dr.  I feel consult is a more appropriate description for out visits and none of our appts. are straight forward.  There is a lot of back and forth and decision making that happens within these windows of time and I need to take full advantage of the time we have with these Dr.s in person.  It’s hard to have your medical “team” be 2000 miles away from you.  We do have local counterparts here for many of the areas but the Hurler experts are in Minnesota.  Remember Coleson was the first BMT Hurler patient in the valley in the last 20 years. 

Wes (yes, we are on a first name basis with our Dr.s) thought he looked great! His chemistry was all in “normal” range. It will be a few weeks yet before we get his engraftment and enzyme levels which I am always anxious to receive.  Last month we saw our local Phoenix geneticist and they took GAG & Antibody levels.  These 4 tests are the key indicators of how Coleson is doing from a “Hurler”/BMT view.
Wes Miller - much better photo than 2 years ago.
Engraftment - means what percent of “Jacob cells” (I no longer need to refer to them as donor cells) he is producing.  He was 100% last year and of course what we hope continues.

Enzyme levels – the amount of enzyme he is producing (0% = Hurler), and he was within normal range last year at 49%.  The higher the better for this normal to eat away at some of the GAG (build up in his body that occurred pre-transplant that wreaks havocs on joints, bones and muscles).

GAG – As mentioned above the amount of “Stored” build-up in his body.  He was at 85 last year and post-transplant has held steady at 5 for the past 2 years.

Antibody Level – Is he building antibodies against the enzyme, rendering the transplant not effective?  This came back negative (which is good).

 We talked about continued Enzyme Replacement Therapy and he felt that is still very beneficial and according to a recent study that U of Minn participated in, the more enzyme circulating in the blood stream the better.  So for now, he will continue.  We even got a half way decent photo with Wes, nurse coordinator Teresa and Paul Orchard, the head Hurler BMT Dr. at the U and is highly involved in the clinical trials and advancements in Hurler and Storage disorder treatments.  I will never forget his email response to me on that Sunday afternoon!


Paul Orchard, BMT, Paul and Coleson with his Recycle Truck
We had X-Rays, EKG and Echo next.  I say “we” as I often have to hold Coleson during everyone one of these procedures to keep him calm.  He really is a trooper no doubt but can you imagine, we are already at our 5th “procedure” on our first day and it’s not even noon!

 
 
 
 
 
 

We will miss Teresa!  Good Luck at NP school.

In the afternoon we had neurology and cardiology consults.  Neurology was painless but the wait was not!  We were in the room for 45 minutes before thankfully a music therapist showed up and Coleson got to take out some much needed energy on the drums!  He loves the drums.  Another 15 minutes later, the neurologist arrived and gave him a gold start.  He doesn’t show any signs of nervous system or brain impact.  He actually is quite smart!
The cardiologist consult was the last of the day and overall his heart condition was great!  He has minor thickening of the mitrial valve but it is not impacting his heart function…but

 The Bad
… I was hoping his PDA had closed on its own but this was wishful thinking as she confirmed it was still there, not surprising to her, and we were still on schedule for his heart surgery to fix the PDA on Wednesday.

Tuesday was an earlier morning and I pulled Coleson right out of bed and into the car where he promptly said, “No hospital, No hospital!”  Broke my heart and we were only starting day 2!   I promised him no “owies” though I am not sure how honest I was being considering we started the day with a 4 hr. neuropsych evaluation.  It is one of the most dreaded appts. for me, nothing like over analyzing everything your kid does/doesn’t do.  However, for him, hopefully it feels more like playing.
 
The Good
However, I guess the 4 hr. duration was worth it as he made progress in every developmental area, even his receptive/expressive communication which is the one area he had been a little lagging in.  They stressed the continued need for speech therapy for his enunciation and OT for his fine motor skill development.  He scored average in both areas while his cognitive scores were still above average (he can count to 100 already!)  I often wonder what he would have been like had he not had Hurler but these are fleeting thoughts as there is no purpose on dwelling on the what ifs.  We quickly squeezed in a pulmonary consult which happens to be on the same floor where which he sailed through with flying colors, despite the respiratory scare we had the week before. Then we were off to St. Paul to Gillet’s Children’s hospital for a hand ultrasound (to check for carpel tunnel) and a consult with the hand Ortho.

 Technical Solutions Difficulties (the bad)
When we checked in, we were handed a tracking device and a buzzer similar to what is used for restaurant wait lists.  As the newly named Director of Contracts Technical Solutions, I am always impressed with new technology that better enables a process.  After waiting 45 minutes without a "buzz", I waited in line for the receptionist.  There was only 1 of her and 3 of “me” in line so it took 30 minutes to get to her.  By that time we had missed the consult with the Dr. and when I handed her my tracking device and buzzer, she informed me that the buzzer had not been assigned correctly!  As you just read, we had already been through 5 hrs. of appts.,  travel to 2 hospitals and an 1:15 hr. wait. I was not happy to say the least!

Customer Service (the good)
However, the receptionist provided great customer service which always makes these things a little easier - right HW colleagues?  J and got us right into the Ortho for our consult and based on her range of motion exercises with Coleson determined that his wrists, elbows and shoulders had actually improved and we could skip the ultrasound!  I guess it was worth the wait to skip another “picture taking” session!

Are you exhausted yet?  We are only on Tuesday people!

The Ugly
Wednesday started early, with a 5:00am wake-up call and a 6:00am check-in time.  After the usual 1:30mins of pre-op, meeting with the Dr.s, nurses and anesthesiologists (who I have the utmost respect for!), he was taken back to the OR.  It never gets easier no matter how many times we have been through this routine.  It is comforting to see familiar faces, although I would be happy if I never saw any of the surgical team ever again!  J  Its funny how even the smell of the surgical ward is familiar... and we have our typical routine.  I struck a conversation with another mother whose son was getting his adenoids out, a first timer.  I feel like a pro at the waiting room protocol and let her discuss all of her anxieties, nervousness, etc…  Only then did I tell her that this was at least number 10 for Coleson (I have to finish documenting all of his surgeries to be sure and how do I count multiple procedures at one time?)   

 He was supposed to have an MRI after the procedure but they failed to realize that they would be inserting a metal coil into him for his PDA and putting him into a gigantic magnet right afterward may not be the best idea!  I thought perhaps we would escape the MRI this year but since he is participating in a trial for the intrathecal enzyme therapy, it is required… after all the intent of the intrathecal is too deliver the enzyme to the brain.  So unfortunately we will have to follow up in Phoenix with an MRI after the tissue has formed around the newly placed coil (6-8 weeks).  Though the procedure itself is fairly low risk, the recovery from it is difficult.  He has to lie still, strapped to a board for 4 hrs. while the blood clots around the incision areas (one in the vein and another in the artery in his right groin).  It took him longer to wake up from this surgery than prior surgeries and I was getting anxious to get back to him post-op.  I always forget how cold it is in the PACU and we were there for 4 hrs.  Longer than required as they needed to one last echo to ensure the coil stayed in place and though they called the echo tech @ 1:00, they didn’t arrive until 2:00, just my luck the tech was training so not only did we have to wait for her to do the echo, he got a “bonus” echo by the trainee (Just our luck).  No problem if this had occurred during the 4 hr. lie motion less post-op but this was hr. 5 and all 3 of us were getting a bit restless.   We still had to be careful of his incisions and as we arrived at Janna and Steve’s for dinner and he comes running out of the car I mention how I have to ensure blood doesn’t start gushing out of his incisions!  You would have never known that he had spent from 6:00am to 3:00 in the “surgical process” besides the gnarly bruise and the new “beauty marks” (scars)!

What day are we on again?!

The Bad
Ah yes, another pull him out of bed right into the car for the audiology testing.  I was hoping for good results since the ABR he had in December showed normal hearing activity and his vocabulary and communication skills have improved greatly.  However, the pressure in both ears was not equalizing and he does have fluid in his left ear (his eustachian tube is not as vertical as it should be).  So they only got one recordable event which happened to be normal range but recommended he get tubes in his ears again (3rd time is a charm)!

Next stop endocrinology with a new Dr.  Dr. Polgreen who had seen the Hurler kids for years left to go to California to do research and clinical trials for Hurler.  I was skeptical to see Dr. Miller (Brad– not Wes) but was pleasantly surprised and really like him.  He was so good with Coleson and explained everything very thoroughly, though it did confirm that the thyroid medicine that Coleson has been on for about 3 months is keeping his TSH levels in normal range (which is a good thing) but just confirms that he has hypothyroidism.  I was hoping his TSH would be too low and would indicate Thyroid medication is not needed.  It’s not the end the world but it is a daily medication… for which I have found a new transport vehicle… Reese’s Peanut Butter Cups!  The crushed pill sticks to the PB and he is none the wiser!    

 The Good

Other than the above news, he is growing according to the chart and actually gained a %.  He is now on the 2% growth curve!  We talked in great detail about Growth Hormone, a controversial topic and one that we do not need to get to deep into yet.  We traveled to the Spine Center to see Dr. Schwender, neck and spine ortho.  This was probably one of the most positive consults.  After more “pictures”, Coleson’s kyphosis had improved from 42% arc to 15% arc.  That’s from all that swimming and climbing!  I tell you, he tries to do everything his sister does and she’s a daredevil herself!  Not sure if that is a good thing or not!  His spine and neck looks great and foresees no spine surgery in his future much to my relief… however, he also was formerly the hip and knew ortho and he prepared us for what Dr. Walker, our next appt. would be telling us, and what I knew but was hoping for a miracle would not be required…

 
The really UGLY
Dr. Walker (appropriately named considering he is a hip and knee specialist) was the appointment I was dreading the most.  Yes, even more so than surgery and neuropsych eval.  After another round of “pictures” (we’re getting good at bribing) we had a “extended consult” with the Dr.  It’s never good when your appointment is labeled, “Extended”.  We spent nearly 2 hrs. Discussing the surgery Coleson will need next summer, Pelvic Osteotomy and Proximal Femoral Osteotomy.  In layman’s terms, Hip Reconstruction, on both hips.   Basically, they will cut his hips and create a wedge and cut off another piece of his hip to insert into these wedges so that it completes the hip sockets.  At the same time, they cut his femurs and reposition the thighbone into the hip socket.  They screw a metal plate into his femurs (which requires another surgery to remove).  Sounds fun, huh?  Oh, then he will need to wear a cast from his thighs to below his knees for at least 4 weeks.  Ideally they will do both sides and both procedures at the same time.  These surgeries are fraught with risk.  They are cutting the very place where bone marrow is made with high risk of blood loss and transfusions required, potential of the bone dying (and therefore not ever growing), spinal injuries (from being sedated & intubated for so long), infections, etc.  They have 2 surgeons working on him at the same time to reduce the surgical time and hook him up to electrodes to monitor his central nervous system.  Did I leave anything out?  Oh, yeah, that outside of the BMT, this is probably going to be the most stressful, worrisome procedure he will need to have.  And we will do this in Minnesota so we will be living away from home for the summer again.    Though I love the RMH, I do not want to live there again necessarily.  It has its pros and cons and it was there when we needed it most, but I think for this procedure, it is better for Coleson and our whole family to be somewhere I can protect him better.


Anyone have a rental house in the Minneapolis area?  J





Monday, July 27, 2015

A Brother from a Different Mother & 2 Year Re-Birthday!

Usually this is said figuratively but in Coleson's case, this takes a quite literal sense, in fact twins!  The highlight of our trip to Minnesota was meeting Coleson's Donor, Jacob and his family.  It is an exceptional experience and one that does not happen that often for various reasons.  We are so very grateful for Jacob and his family who were faced with the decision to help try to save a life of someone he didn't even know.  I'm not even sure what to call such a person.  Somehow adjectives like generous and unselfish do not seem adequate.  We call him our hero!  I'm not sure what gift we could give him in return other than a heartfelt thank you and to meet Coleson in person. 

Can't you see the resemblance?!
During the transplant, you may recall I mentioned a physic reading I once had where the physic said I was going to have twins.  Well I guess I don't have twins but rather a twin, genetically speaking.  Hopefully he inherits Jacob's height as Paul and I didn't give him much to work with in that category!  Also, we now have a new namesake for the J. in Coleson J. David.
 
 
Happy 2 year Re-birthday Coleson (July 24th)!
 


Peyton just can't resist climbing on RM
Finally one without climbing!

I can't believe it's been 2 years since Coleson's BMT.  We just got back from our annual tour of Minneapolis hospitals where Coleson had no less than 16 different "procedures" including consults, x-rays, surgery, labs, etc.  It is an exhausting and overwhelming week where you hope for the best of news and end up walking away with some mixed news.  It was no different for us this year... I will fill you in on all the medical details tomorrow as I want to share the positive aspects of our trip.  I will mention though that it is nice to see "old" friends.  Lizzie and Caleb were not able to make it at the same time this year but we got to see Brayden, Maddie, Tia and Ari.  We didn't get to see Maddie last year so it was nice to get to see her this year.    We celebrated at the RMH house on Bingo night so the house was full of people including 2 Hurler families who both have been there way to long.  One little girl failed transplant - never engrafted and had an emergency second transplant and the other family with fraternal twins, girl & boy, both have Hurler.  The girl is doing well but the boy is starting to reject his donor cells and will need another transplant as well.    Ironically the former little girl also is a fraternal twin but her twin is unaffected. My heart goes out to these two families as they are into the 200 day range already and their journeys are far from over. 
Ari, Tia, Brayden, Coleson
Peyton had a fun week bonding with Grandma.  Aggie flew into Minneapolis while we drove so she could play with Peyton.  Peyton is not one for Hospitals and to try to keep our Minneapolis trips as positive experience as possible for the entire family, Grandma thought it best they play.  And play they did.  We stayed at a hotel with a big indoor park/play center.  If you know Peyton, she is high energy and loves physical play.  She loves to swim, play at the park, gymnastics, dance, etc.  She played all day long at that play center and even most of the night.  Tuesday the hit the rides at Mall of America (Nickelodeon Universe) where she rode no less than 30 rides over an 8 hr. timeframe.  She even got Grandma on a roller coaster.  Paul, Coleson and I met them after our exhausting day (more details tomorrow) and for the first time since BMT, Coleson got to ride the rides too.  And he loved them just as much as Peyton!  Especially the Wonder Pets ride which he rode on 5 times in a row and had this same reaction each and every time! 
 
 
 
 
The next day they took it easier and played in the pool at the hotel and then after Coleson got out of surgery (Yes, another one bites the dust), we went to my Honeywell friend, Janna's for dinner.  One of her sons and his family was there and they have a little girl a year younger than Peyton so she was happy.  Although she and grandma had shrimp for lunch and for the 3rd time, she got sick a few hours afterward.  I am convinced she is allergic to shrimp now.  Thursday was all day at the Waterpark of America with Brayden and Ari and their families with the birthday celebration mentioned above at night.  Friday we met up with my friend Nicole and her daughter for a park play date and then to the RMH where my Minnesota Honeywell family donated, volunteered, cooked and served dinner.  Another awesome dinner served! 
 
We also stopped to see a dear friend, Karee Jo, who is in the hospital enduring another 20 rounds of chemo.  She was here in 2013 where she went through her first 20 rounds and a surgery to remove the tumor and half of her lung.  It returned 9 months into remission and she is back at it again.  This little girl defines the word, "tough" and the only time I saw her break down was when she was told she might not be released in time to make it to the One Direction Concert on Sunday.  Which she did and she got to meet them backstage.  We love you Karee Jo and can't wait until you are back in remission. 

I'll give you all the gory medical details tomorrow.  It's time I put my kids into bed!





 

Friday, May 22, 2015

Graduations and Celebrations

Not sure any actually made it into his mouth!
Well we pulled off the big surprise by showing up unexpectedly to schools and homes last weekend.  My Grandma looked great for any age, much less 100.  It was a short weekend but packed full of fun, so much so that Peyton with that huge heart of hers, did not want to leave her cousins!  The first time that she was in tears leaving.   It was fortunate (and just coincidental) that my niece Katie was "too sick" to go to school on Friday and when she showed up at Grandma's house in the morning to find us eating breakfast her jaw hit the floor.  She wasn't too sick to spend the day playing with Peyton and Coleson though and so we went to Mooville for some ice cream.  Then we showed up at the High School to surprise my oldest sister and my other niece.  Jaw dropping must run in the family because they both had the same reaction.  Then we headed over my nephew's school to surprise my other sister and the boys.  They didn't necessarily have the same reaction (they are boys and play it a bit cooler) but none the less were happy to see Peyton and Coleson.  All my nieces and nephews are so good with my kids.   They spent the evening schooling Paul at basketball and playing on their scooters.  We also surprised my grandma at her place on Friday as Saturday we predicted would be a bit overwhelming. 
Looking Great at 100!
Saturday was spent playing on the farm and Aunt Lorin's house until Party time.  Lots of people showed up Hope Landing to celebrate both 100 birthdays.  I don't think age is a topic they talk about much at Hope Landing so there were quite a few residents who were equally surprised by the special day.  Saturday night was another basketball schooling and family fun.  Sunday was short as we had to leave for the airport at 11:00. 



Grandma Great and her Greats!

And the with the Grands!


Cool in Daddy's Shades!
Did someone say Cake?!




Coleson's last day of his first year of Pre-school was this week.  Since there are kids moving on to Kindergarten next year they had a graduation and all the kids regardless of age/grade got to attend.  I didn't use to be such a softy but I had tears in my eyes as they played the traditional graduation song and he accepted his diploma!  Which he immediately tore.  Peyton's last day of pre-school was last Thursday.  They didn't have graduation but I too felt sad that she was leaving such a great school, Day Spring, and will be heading off to Kindergarten in the public school system next year.  When we went to enroll her last week, she said she was very nervous about going to her new school.  If I have to be honest, so am I!  Looking forward to the 3 day weekend. 

Coleson's story was featured on the ABC 15 website this past week to promote Be The Match Donor Registry.  http://www.abc15.com/news/be-the-match/blood-transplant-was-phoenix-3-year-olds-only-hope .  I also attended a lecture from a Neuropsychologist sponsored by Genzyme, the company that distributes the Drug (Aldurazyme) that Coleson is infused with weekly.  I got to meet another MPS I mother that I have only emailed with until now.  Her son has the adolescent onset form of the disease and an adult women who has the adult onset form of the disease.  It was good to connect with others in the valley (there are so few of us) that are living with disease.    Well, that was our week!  Hope you all enjoy or enjoyed your holiday weekend.

Wednesday, May 6, 2015

Birthdays, Donor and MPS Awareness Day

Birthdays - Some big ones coming up.  First would have been my Dad's 75th on May 8th.  The year of "firsts" is always hard and this will be no exception.    I made this for Dad when I was in 5th grade.  There were typically school projects for "Mother's Day" and it was convenient that my Dad's Birthday was always the same weekend so I could modify the projects for my Dad's Birthday. (My dad and Aggie didn't marry until I was in 7th grade).  It's hard to read but it say's,
 I Love You Because...

Family Leader
A nice guy
Tough and Always Working
Hoping we will be right
Eager to get the job done
Really interested in what we do

I might not have been a poet at 10 years old but it was pretty accurate.  Still don't believe that he is not here with us to celebrate this milestone birthday....
Speaking of which, my Grandma is turning 100 on May 19th.  We are flying home to surprise her.  It's about the only thing a 100 year old would want on her birthday.  Aggie and my Dad threw her a big party last year just in case she didn't make it to 100.  We never expected it was because my dad wouldn't make it.  My Grandpa's Birthday is on May 9th, though he has been gone for 21 years now.  I think Grandma is really looking forward to the day that they can celebrate their May birthday's together again. And to be honest I hope they are together for it next year.  Not because I don't want my Grandmother here but when you have lost everyone in your immediate family, and you're 100, the days must tick by so slowly. 

On April 1st, almost exactly 2 years after we received Coleson's Diagnosis (April 2nd, 2013), I received his marrow Donor's contact information.  It was the day I had been waiting for since July 24th, 2013.  I was finally able to thank the man who gave my son a new opportunity at life.  His name is Jacob and he's from Wisconsin.  Coincidentally, Coleson's middle name is J.  Just "J."  Originally it was for John (my Dad) and Joyce (Paul's mom) but I can't help but think there was another reason for naming him just "J."  He seems to be a good guy (being a donor take's a special person) with a lovely family full of boys(3). He responded back to me that he felt a special connection as one of his own is Coleson's age.  I hope to thank him in person some day.   



International MPS Awareness Day is on May 15.  Wear purple to spread awareness and help make a difference in the life of a child with MPS or related disease! If anyone is interested in Donating to the National MPS Society, to help find a cure for my son and others with this illness, here is the link:  http://mpssociety.org/

We are making our annual summer trip plans including our week long tour of the Twin Cities Children's Hospitals.  I think we have to go to 4 different ones to see all of his specialists. He may have his heart surgery while we are there and hopefully we will hear that he will not require any other surgeries in the short term. We are also excited to help host the 2nd annual RMH dinner with the help of my Minneapolis based coworkers! On July 24th again as luck would have it!

We held a Kentucky Derby/Fight Night celebration at the Ranch over the weekend.  My dad's truck proved to be one of the more entertaining "toys" to play on.  I think my Dad would be happy that it is bringing so much joy to my husband and my kids! (Which in turn, makes me happy).

 Another bit of bright news in April was that I received a promotion at work.  My new title is Director of Contracts Technical Solutions!  I am so thankful to work for such a great company and a great function and a great team.  I need to finish building out my staff but then hope that to make some significant and exciting achievements.   

Tuesday, March 24, 2015

No News is Good News


Many of you have called to check up on Coleson (and the rest of us J) recently so I am making time to post.  The saying goes, “No news is Good news” and for now, I would say that is pretty accurate. 

 

We have enjoyed the last few months, being somewhat “normal” enjoying the Arizona winter outdoors and in the pool.  Last weekend we spent most of the weekend in the pool and Coleson, who is fearless around water just like his big sister, is making great progress.  He can swim under water the width of the pool, he can get his head above water briefly and knows to turn and swim to the stairs when he jumps in and yes, he does jump in!    

 

We are staying healthy for the most part despite the measles outbreak and the flu vaccine not totally hitting the mark.  Both Coleson and Peyton had some bad intestinal issues a couple weeks back and I thought not only did Coleson have a  C.Dif flare up but that Peyton got it too, but his labs came back negative so I think we determined it was due to lemons.  AZ Citrus has had some “bugs” this year and I think we were impacted by it.   I also had quite a scare after Coleson got his second round of DTAP and Prevnar vaccines.  That night he couldn’t walk on one of his legs and really had me concerned. Wouldn’t you know that Paul happened to be on business travel that night.  Thankfully a good friend and neighbor, Teresa a Physical Therapist, was home and she evaluated him.  Without knowing he had had a vaccine, she confirmed it was his right leg that he was favoring and not his back or hip (which I was fearful of).  We gave him some Tylenol and by the next morning he was fine.  He has never had a bad reaction to a vaccine before but he was pretty tense by the second shot which was in his right leg.  I know there is a lot of controversy around vaccines and with both kids I was slow to immunize.  Neither had a negative reaction until now. Unfortunately, Coleson has to get them all over again since his BMT.  We have been to allergists, ENTs, Endocrinology, dentists and others over the past few months.  Contemplating putting tubes in his ears again, since both have fallen out now, watching his thyroid level and determining when to get his PDA (his hole in his heart) fixed.  I’m waiting for University of Minnesota to schedule all of his appts to determine if he will need to be sedated there and if so, probably just wait to do the PDA there in July. 

 

Coleson is also starting to potty train.  I’ve decided to do the “3 day Challenge” with him but I never have 3 days to devote to doing it.  Last weekend we gave it a strong effort (in between pool time that is) and he seems to have made progress even going on the potty at school twice.  We didn’t have much opportunity this past weekend so we are targeting Easter weekend to give it another solid try. 

 

I’ve done some travel.  First to Puerto Rico in January to see my team that lives there.  It has been 4 years since I’ve been there and it was very good to do some team building with all my team members (9 in Puerto Rico). I also got to see Pat and Theresa (neighbors from above story) who were there for winter baseball (Pat is a baseball player).   Also, Paul and I took a surprise vacation to Cabo with my sister and brother-in-law in February.  I’m not sure I was ready to “plan” a trip so far away from the kids but this literally just fell into place last minute after Lorin got a call a week before saying they had overbooked her hotel and they were moving her to another hotel.  At first she was skeptical but after talking to some family friends found out it was a 3 bedroom Villa at a 5 start resort.  She called us  and before we knew it, we had nanny coverage for the weekend and our tickets booked.  It was a nice long weekend and this resort was within the same family of resorts we stayed at when I was 6 months pregnant with Peyton (and loved by the way).   Had I had months to think about the trip, I would have found excuses not to go but literally it was too good a deal to pass up. 

 

Grandma has also visited twice.  The first time she drove my dad’s, “Big Red Truck” down here with a friend to give to Paul.  It was the one thing we asked my dad for prior to him passing and he gladly gave us.  Paul’s truck (F250 King Ranch) was stolen from the Honeywell parking lot 6 years ago (again when I was pregnant with Peyton) and the Honda Accord he got in replacement has not had the same feel.  I know my Dad always wanted Paul to have a truck again and to know his truck is at “The Ranch” I think made my dad happy… and it makes Paul very happy too.  He loves to drive the truck and the kids love to ride in the, “Big Red Truck” too.

 

Her latest trip was just last week, the normal time she and Dad would come to AZ.  This time a bit more emotional as Dad was traveling with her via vials.   One to be spread at the Ranch and one to be spread in Sedona.  It’s ironic that my dad was not a traveling man, that is not until later in life when Aggie finally got him to go on adventures with her, that he wanted a little bit of him to be spread at his favorite places including The Ranch, Sedona and Tibey Island.  We just felt a bit rushed to try to do this during this visit though and decided to wait until her next visit over Christmas.  So for now, Dad is now watching over us for a while here.

 

Peyton is doing well, still enjoying gymnastics, swimming, horseback riding and school.  We have now added dance to this mix as well.  Freestyle – which is more suited for her personality.  She is 5 ¼ now as she will tell you and looking forward to going to Kindergarten at Waggoner next year.  She is such a good big sister which Aggie and I got to witness when Coleson went with her to Dance class.  She made sure that Coleson was included in every way.  I think she was more focused on Coleson than herself.  She is so proud of him and I of her.  She often likes to sleep in his room with him (that is when he actually sleeps there himself).  After potty training, these will be the next 2 things we tackle with him. 

 

Paul did well at the Arabian horse show this year, getting 3rd place in the Novice division overall.  We’ve also been able to spend time with some friends this year (date nights even) as we don’t have to be as protective of Coleson’s health like we were last year.  I’m still experiencing some funny sensations in my heart.. I don’t know if there has ever been a time I have been fully confident that my pacemaker is working as well as I’d like it to.  A close family friend recommended a cardiologist and after a stress test, he thought perhaps my sinus node is starting to give out.  There are 2 “nodes” in the heart and currently my pacemaker is only acting on behave of the AV node (it’s what carries the current from the top heart chambers to the bottom chambers).   I am currently on a 30 day holter and event monitor.  So I am wired up and hoping that it is not my sinus node giving out.  I am fully dependent on the pacemaker now so I don’t know why I am fearful that my sinus node isn’t working, I guess I have a false sense of security with only 1 node being broken.  If for whatever reason my pacemaker gave out though I would be a world of hurt. 

 

I’m looking back at the pictures from last year that make up my 2015 calendar, I had titled March, “Clowning Around” for the picture of the kids with Ronald at the RMH next to the ambulatory building at PCH. We spent almost 1 full day/week there last year at this time getting his infusions and his weekly checkups.  After 3 months going around in circles with the insurance company and his Physical Therapy and Occupational Therapy providers, I finally closed out ~$2600 in unpaid Physical Therapy bills.    I said this last year but I really hope 2015 is less eventful than 2014.   
video
 

Friday, February 6, 2015

BMT Day Video Post - Link

For some reason, the video link did not appear in the email that came out so I am reposting the URL:

https://www.youtube.com/watch?v=DJcLoBmFp4o 

Sorry, I'm not an expert on Blogging and YouTube!  :)

Thursday, February 5, 2015

Coleson's BMT Day Video







It's taken me a long time to put this video together of Coleson's BMT day.  It's 9 minutes long and cannot be played via iPhone, so it needs to be viewed from a computer.  The first half is filled with all of our BMT day supporters (friends, family, colleagues) in their Coleson's Courage T-shirts which was organized by one of my best friends, Emily.  I was surprised to start receiving these pictures the day of his BMT and it helped knowing there were so many people lifting us up on that day.  If there is a missing photo of a Coleson supporter, please let me know and I can easily add it to the video.   The second half of the video is the BMT and post-BMT days.  The actual transplant itself is a blood transfusion so though significant, there isn't much to it.  It's the days of Chemo and other protocol leading up to it, its the dark days afterward where his own cells are no longer reproducing yet his new cells aren't either, it's the days, weeks, months, years after BMT that make his one of the most incredible journeys. 



So much has changed since this day, mostly for the better, but as I play it, I see two angels who were with us that day but are not today.  A reminder that life is precious no matter how old you are, no matter what your battle.