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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.

Monday, August 4, 2014

T+365 +++ Happy Re-Birthday Coleson and our summer Trip


I know you all have been waiting patiently for an update our trip to Minneapolis... I have been pretty sick since we returned home with a Sinus infection and as I am going on day 7 of this crud, I'm only feeling moderately better. I'm even on the z-pack.  What's worse is Coleson has the same thing and even though we are 1 year post transplant I am monitoring him like a hawk.

As I logged on to write this post I realized that I never published my last post from a month ago. So I apologize that it has been 2 months since you've last received an update. 

Well our trip to Minneapolis was a very busy, mostly positive, very emotional one.  We got to spend our first day having lunch with friends Nicole and Kelly and then to Janna and Steve's for a family afternoon and dinner. 


Bright and Early Monday morning kicked off our Jammed pack week of Dr.s visits, procedures and celebrations.  First up with the neuropsych evaluation.  This is never a fun appointment!  After a few hours of testing cognitive, social, speech, fine motor and gross motor skills we were told that Coleson is still testing at the average level for the cognitive, social and speech skills but is slightly below for fine and gross motor skills.   This was to be expected but of course you never want to hear it confirmed by a Dr.  We then went to endocrinology appt. where we heard some average news again.  He did grow in the past year but remained on the same growth curve with is the < 1% compared to kids his age.  We know he will be exceptionally short - hopefully he will make it to the 4 foot range, but I was hoping he has made up some growth as he appears to me to have been growing so fast.  Next we were on to see his Dr. Miller, his BMT Dr. and have an EKG.  This appointment was way too quick.  There are so many questions that I didn't get answered as we were already running behind schedule to get his chest X-rays and to drive to St. Paul to Gillett's Children's hospital to meet with our first orthopedic Dr.  Since he had not had labs drawn yet, this was just a clinical observations but Dr. Miller thought he looked great.  The neurologist quickly assessed him as well though by this time he was sleeping so again, a quick observation/assessment with positive remarks.  We then re-scheduled his chest x-ray and went to St. Paul.  I tell you, it was heartbreaking seeing all the kids with some very serious orthopedic issues.  It was difficult to get a leg X-ray but we managed with both Paul and I holding him.  Dr. Walker said he had typical Hurler hip/leg development with incomplete hip sockets that most likely would need surgery in a couple years to fix.  He is slightly knock kneed but it is too early to tell if this will correct itself or if this too will require surgery in the future.  After an exhausting first day we headed to the RMH for dinner. 

It was great to see the staff and to see some of the renovations that the All-Star organization helped pay for.  We did not expect to see Peyton's friend Coco and Nana to still be there but unfortunately for them, they still were.  We thought they had gotten to go back home to Saudi Arabia (and they thought they were too) but at the last minute, when they pulled Coco's line out, discovered fungus in the line and so she had to stay for treatment.  We also were disappointed to see another family still there... Carter had neuroblastoma and after enduring and surviving what I can only say was a hellish treatment of chemo, radiation and BMT, they had actually gone home, cancer free.  They returned 3 weeks later after he complained of back pain only to find 3 more lumps in his back and were told there was nothing else they could do.  So they were there just for pain management as Carter lived his last days.  The RMH was busy with big families.. more people then were there last year, there was not an empty table for dinner.   Paul unloaded about 25lbs worth of soda tabs that traveled with us from Phoenix.  We filled up half the container.  Thank you to all of you who collected these for us especially Amanda and Charlotte. 

Tuesday was an early morning as Coleson had surgery to repair his hernia and while sedated to get an MRI, EMG (for carpel tunnel) and his chest x-Rays.  I'm not sure it is a good thing when you go back for pre-op and you know the pre-op nurse, the anesthesiologist, both surgeons, etc.  However, it is comforting to have a set of Dr.s who have worked with Coleson before.  After a 4 hr. sedation and procedures, we met back up in Post-op. He was very sore after his hernia surgery and he barely made it up in time for us to make it to his pulmonology appointment at 3:10.  After a painstakingly long appt. which could have been shortened greatly (especially considering what Coleson had been through that day already) we received positive news that his lungs looked good and we could start to wean off the inhalers.  We had a fun dinner with our BMT family (Siegels, Christensens and Bells). 

If you thought our week sounded exhausting already, Wednesday was actually our busiest day.  We kicked it off with an eye exam where again we had slightly positive news in that his nearsightedness and astigmatism mostly canceled each other out so wearing glasses is not necessary, however is good practice if we can get him to put them on occasionally.  We then had Physical Therapy who gave us some recommendations then an echo and cardiology assessment.  It was this appointment that we received the most frustrating news...she wants to fix Coleson's PDA which has been a known issue since before BMT but wasn't worrisome enough to delay BMT.  But now, he should really get it fixed.  Wait, weren't we just in surgery the day before?  I was hoping we were done with surgeries for a while.  And not only would this require 1 surgery but 2 surgeries as he should really get his port removed for this surgery and the replaced after infection risk has passed.  Lovely! 

We then moved on to audiology testing and ENT.  He only lasted so long in the sound booth as by this time he was exhausted.  They observed no change from previous assessments so we need to stick with hearing aids and speech therapy but at least both tubes are still in his ears. 

Finally, we were able to go to the RMH where with the help of our Honeywell family and super boss woman organizer Janna, we pulled off an amazing dinner.  Paul and Jack (Caleb's dad) were the grillers and Cary was the runner with all the chicken and hot dogs.  There were many Honeywellers there to serve and whom made all kinds of salads, beans, cookies, etc.  I am so fortunate to have the support of my work place and to be in a location to have their support.  It was a crazy night for me as I met two new Hurler families that night and we celebrated with our BMT family 4 1 yr. anniversaries (Caleb, Coleson, Lizzie and Ari).  It was a night we had looked forward to for a year and were so appreciative that we got to celebrate it together.  Another Hurler family we are close with was also there that week so we also got to celebrate Braden's 8 year anniversary. 





Thursday was our last day of appointments starting with the Orthopedics for the spine.  We heard fairly positive news thank goodness in that the only issue he really has is the slight kyphosis which is measuring at 42degrees. Otherwise the rest of his spine and neck looked good.  We need to keep him strengthening his back so the kyphosis doesn't worsen and may even get better.  We had our first break in appts so we headed back to the hotel for a nap...and I ran over to the Mall of America for a 2 hr. power shopping.  I only hit 4 stores but it was enough for my credit card company to call me to verify my card had not been stolen!  That tells you how infrequently I shop! 

We finished up our day at the Orthopedics for the wrist where again, we got positive news in that he shows no sign of carpel tunnel or digit trigger issues.  We went back to the RMH to have our last day with our BMT family and to of course to play Bingo! 

Friday Peyton and I went to the water park with the Siegel's and then we all went out to lunch before we said our "see you soon"s.  They will be coming to Phoenix to run the Be the Match 5k in October, a cause so near and dear to us.  (I will posting a blog update on this soon). We made it to Lincoln Nebraska by 9:00 pm and on Saturday to Elizabeth Colorado where Oscar and Charlotte welcomed us into their home for the night with a nice dinner and night of conversation.  Charlotte and Oscar have supported us greatly over the past year in so many ways.  We are so blessed to have them as part of our extended family.
We left Co. at 7:00 am for our longest drive of 12 hrs making a stop at Little Anita's in Albuquerque and then into the up and down of the Northern AZ mountains.  We had amazing weather until we hit ALB and AZ where it down poured and was dark for hours until we hit the valley of the sun.  You would not know we were in the same state.  14 hrs after we piled into the car, we made it home.  Upon which my sinuses started to fill and rendered me fairly useless for most of the week. 

It was an exhausting vacation.. if you can call that a vacation.  I don't know when we will be able to take a real vacation which isn't centered around hospital visits or Coleson's disease.  It was an exhausting year...but we survived it with the support of amazing friends and family.