to work or not to work.....that is the question

Monday, April 22, 2013

As I sit here at my computer browsing through job postings for both teaching positions and medical transcriptions positions, I wrestle with the hugeness of it.  I am a worker, not a relaxer by nature.  In the past I worked a full-time job, a part-time job, and I went to school full-time to get my Master's degree.  I am no lazy slouch....but....all of that has changed.  My perspective on life, my mental energy for work and for running the family.  Will I be able to work, will I have time, will Dillon need me more than I expect once he starts school in the fall? So many unknowns continue to float around in my existence.  Top priority is Dillon's continued care, and then there is the rest of the family that I need to keep functioning in a normal way....there are sports and music lessons and there are friends and family..how would I possibly fit hours of work in each day??  But I MUST...our finances are in shambles and the house payment awaits.   What is a girl to do??

Big D had a basketball extravaganza this weekend.  He invited several friends to the park and he played for 2 hours....boy was he tired after that.  So tired that his belly could not possibly digest his lunch...oops.  We are still learning when we need to make him rest so that his body doesn't shut down like that.  It is so uplifting, amazing really, to see him running, jumping, laughing, roughhousing with peers, Luca's friends, Sean's friends.

The home school work continues.  We spend a few hours each day.  We get a lot done and he is retaining lots and lots of math skills that gave him fits when we first started.  We go to UNM on Friday to get some blood work done.

There are going to be 2 upcoming fundraising events......I will keep ya posted so that you can participate in some way if you wish :))

Positive results...

Monday, April 15, 2013

Another trip to Denver with a good outcome.  Dillon's labs all came back stable and improved.  His blood counts, his liver, his kidneys, everything is good.  His CD4 count, which is a specific test of his immune system function, continues to rise slowly but surely.  When the number gets to 400 he can stop wearing his mask.....which will be a HUGE milestone.  The docs don't expect that to happen until September, when he is 1-year post transplant.

The belly has improved greatly.  Dillon gained a couple of pounds in the past month and he has hardly any nausea and no vomiting....YIPPY. 

Things are very stable and moving along as we expect.  Dillon has been very active with basketball, swimming, and trampoline.  This results in some soreness and cramping but those muscles are all getting stronger.

The rest of us are doing well also.  Sean is working and I am holding down the fort.  Mr. Luca is performing as a main character in his class play at the end of this week and he is SUPER excited.

We return to Denver on May 6....in the meantime....happy warm spring weather.

regular childhood fun

Dillon is doing very well, as is the entire family.  There are no real medical updates to share with you other than the fact that his belly has improved over the past 2 weeks, he has gained a couple of pounds, and his nausea has been at bay for the most part.  YAHOOOOOOO!!!!  We are learning that the belly issues are going to come and go and we have to just manage the difficult times when they come.  The doctors are not at all interested in doing another scope at this point....i.e. they are not terribly concerned that the GVH has returned.  Of course, we will continue to monitor, as this can be a problem for up to 2 years after transplant.

Now to the normal childhood stuff.....

The other day I stayed up very late reading a good book and that translated into me sleeping late one morning.  The boys very carefully closed my bedroom door and played quietly so as not to disturb me.  When I finally did roll out of bed I immediately smelled food cooking....hummmmm....what could that be???  I stroll into the kitchen to find Big D slaving over the stove.  He had scrambled eggs and topped them with cheese and he was in the process of flipping pancakes on the griddle.  He flashed me his amazing smile and says....."Oh good, you are up, I made us breakfast."  Now what gets better than that....really????

Dillon and Luca went swimming with friends twice this week.  Dillon is finally ready to start reconnecting with some classmates and the group had a blast at the community pool.  

Dillon has resumed his viola playing and lessons.  Here is a photo of them playing together.  I have a video but I cannot get it to upload....darn it!!!

 

Now for a really big fun event......

The New Mexico Children's Cancer Fund has a program at UNM where every night that a child with cancer stays in the hospital they get $10...and every time they go to the outpatient clinic for an appointment they get $10.  Siblings also get $10 if they come to an appointment to give support to the patient.  So Dillon and Luca participated in this program last summer while the Pickle was in the hospital.  They saved their money (mostly :))  and pooled it together and look at what they bought together...

flying high on the new trampoline

We head back to Denver tomorrow morning with appointments on Monday.  If all goes well, we will drive back home on Tuesday.  Sean is out of town working so it will just be the boys and I.  They are SUPER excited because they will get to see their friends at Brent's (Monday evening is community dinner night) and they will get their own room again....what they don't know is that I am SUPER excited because I get MY OWN room too...hehehehe.

Have a great week everyone.  I will update you with labs and such later next week.  

Oh yeah....for all of you local folks who have been so kind and generous and loving and supportive.  We want to get together with many many many of you.  We are finally falling back into a somewhat normal routine at home, so our goal this spring and summer is to visit with you......we don't want you to think we have forgotten about you or that we don't want to see you....we do, but the list is long so it will take some time to fit it all in :))  MUCH LOVE!!!!