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.

Thursday, February 27, 2014

T+217 Wear Jeans for Rare Genes on Feb 28th.

As always, I am late with my communications but tomorrow is "Rare Genes day" and to honor those like Coleson with rare genetic disorders, it is wear Jeans day.

Going back a couple weeks...

I had the best Valentine's day this year..  My son gave me the gift of his heart.  We met with the Cardiologist on Valentine's day and he said the fluid around his heart was minimal enough that we no longer have to have weekly echos.  We instead can have them every 3 months from here on out.  Many of you would think having echos every 3 months is not something to celebrate but this is a welcome relief to our busy weekly Dr. schedule.  Peyton gave me the gift of being an exceptional big sister, going to Coleson's visit with him, doing all the routine stuff like Blood Pressure, weight, heart listening, etc. right along side him.  My husband surprised me with an early Valentine's "Grown Up" dinner of Sushi and a movie (America Hustler).  Rachel stayed with the kids all evening.

We received more good news over the past few BMT Dr. visits in that we are continuing to taper the Steroids and CSA, his blood pressure is under control with the new dose of Amlodipine and his Magnesium is finally in the middle of the range.  I have increased his oral Magnesium with veracity in hopes we can discontinue the nightly IV magnesium.  We reduced the IV dose to 800mg this week and I am really hoping that in a week or 2 Dr. Douglas will stop them altogether.  He should be off CSA by March 20th and that is what depletes the Magnesium in the first place.  He's currently at 50% of his original dose.  He will need another dose of IVIG probably next week though and I hope that too will be his last.  I can't wait to get him off all these meds, get his central line taken out (replaced by a port) and get this kid in the pool and more importantly stop the weekly dressing changes which is ripping off a huge sticky bandage off his hairy little chest and under arm area.    We have been trying to swim when he naps because he so wants to swim...

Paul did well at the horse show despite riding very little this past year.  He took Grand Champion in one of his classes, catapulting him out of "Rooky" status.  He is now a Novice.  His trainer Crystal has been amazing support for him this past year and obviously has done great work with his horse, Rafiko or rather "Every Chic's Dream" (his show name which Paul just loves especially when it appears right under his own name!).

Aggie, Beth (Step mom and step sister) and Rachel's sister Mina just left after a short visit with us.  It was nice of Beth to want to make the trip out here to see her niece and nephew.  For those of you who don't know she has Muscular Dystrophy, another inherited disorder, and traveling is not easy on her.  Since we didn't make it home in the past year to see her, she came out to see us.  She and Coleson have so much in common now.

My good friend's mother, Connie, has been sitting with the kids on weekends/nights so I can catch up on "life" and I was able to put together a calendar of pics from the past year.  It is amazing to see Coleson change from pre-BMT, to during BMT to post BMT and to post, post BMT.  He went from dark blond straight hair to bald to curly dark hair.  It was also amazing to see how "sick" he looked after BMT or rather how healthy he looks now.  I didn't recognize it at the time or perhaps I didn't want to recognize it at the time, but now I can clearly see how tired and worn out he was in August, September, October, etc.    A BMT is one of the toughest procedures a body can take and not all of them do, I am fortunate that Coleson did.  I keep my friend's who were not so lucky in my thoughts every day.

Tuesday, February 11, 2014

T+200 and Leaky Hose

For those of you who are connected to my Coleson's Courage Page on Facebook, this will be pretty much a repeat of my post from this weekend.  For the rest of you, this will be new:

So my new analogy for this BMT rollercoaster ride is that it is like a leaky garden hose.  We tape up one leak just for another leak to pop up.  Last week his hemoglobin dropped to 7.7 so we had to spend another day in the Hospital getting a blood transfusion and IVIG.  Peyton and Rachel went with us as he his tolerance for hospital stays is minimal especially when you have to be cooped up in a hospital room for 5 hrs.  His blood pressure also took an unexpected rise over the past 2 weeks, requiring a couple doses of Irazipine and an increase in his amlodipine.  Also requiring frequent blood pressure checks which is just another thing I have to do "to him".  So far this week his BP has returned to "normal" so I'm hoping we do not have to go to yet another Dr. (Nephrology) He's been congested for the past 2 weeks as well, which just adds to the over all concern.  I think it's allergy related but it does seem to coincide with his steroid tapers.  We all had a bad case of allergies over the weekend (even Paul) so I hope we'll break out of this early allergy season (with the higher than norm temps) soon.
His echo last week was better than the last one we had in Phoenix which was on 1/13, I don't know in comparison to the one we had in Minnesota, but I'm hoping we can start nixing these weekly appts. off our schedule soon.
His platelets and WBC dropped this week compared to last (still within a normal range), probably as a reaction to the increase in hemoglobin and I hope next week all blood components will find harmony.  Dr. Douglas dropped his overnight fluids by 1/2 so he's only on 200ml of fluid overnight.  Now I only have to change his diaper once overnight which is a welcome relief.  We are continuing to taper his CSA which is what depletes his magnesium which is why he's on overnight fluids.  I long for the day we can stop them altogether.  It's a slow taper we started at 1ml/day total and we are not at .7ml/day total and will drop 1 ml per week.
Peyton is enjoying school, music, Spanish and gymnastics but not her new "Ben"...I replaced my stolen IPAD (Peyton's Ben) with a surface 2 (Microsoft tablet).  It doesn't have as good as apps for Peyton to play with but I like the comfort of a windows experience.  She has been such a good girl through all of this.  I constantly watch for clues that she is getting jealous or resentful of the attention Coleson gets and try to do things 1:1 with her.  This Sunday my girl friends took our kids to see the Cat in the Hat.  Kim and I even dressed up as Thing 1 and Thing 2.  

Paul has a bit of work travel this month and the Arabian Horse Show starting this weekend.  I know he doesn't get to ride Rafiko as much as he'd like and hope he can get back into doing so soon.
Aggie and Beth and Rachel's sister Mina are coming for a visit next weekend.  It will be nice to have the company.

And lastly the community garden I was formerly treasure of (no time nowadays) is having their annual plant sale on March 1st. so if you are in the Tempe area, stop by.