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, 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.