Sunday, May 22, 2011

A New Adventure

Well, we did it.  We made it past the first year with sanity intact.  Some moments have been excruciating, most have been a joy!  It has been quite some time since I posted, so here's an update on what's been going on the last couple of months:

Feb/March -  In late Feb we got the approval from insurance to have a home nurse to monitor Logan's tube feeds at night.  We did some interviews, hired an nurse, and Karlene has now been with us since then and is a huge blessing to our family.
   My family came out for a visit during my sister's spring break in late March.  It was SO fun to see my parents and 2 of my 3 sisters bonding with Logan and just to take some time off of work and play around the Puget Sound area and visit with some other extended family.  I absolutely adore my family, so it was also a nice treat for ME <3

April - Lots of fun stuff happened in April.  We got Logan's first birthday photos taken and of course threw a birthday party!  It was so fun for Logan to play with his family and friends and open gifts, and even the weather held out that day!  We were so honored and surprised to see how many people he has already affected in his (so-far) brief time on earth.  We also got to go to my cousin's 3rd birthday party in Olympia and enjoyed that as well.   Logan had a couple of hospital visits in April.  One was just a 12 month well-baby visit which included SEVERAL vaccines.  The other was a clinic visit with some pretty major changes.  I will go into more detail about this visit at the end of the blog.

May - So far May has also been a blast!  The first week of May, I was blessed to be invited to a silent/live auction to benefit the CF Foundation.  It was so fun for me to be able to get all dressed up in my formal dress and taking my great Aunt on a date.  It was a great dinner, a great night, and over $60K was raised for CF that night.  It was awesome.  I have also had the priveledge of going to 2 Great Strides walks this month.  Both were awesome and I got to connect with some good local families who also have kids with CF.  It's always nice to meet another parent face to face and just metaphorically lean on each other, with the understanding that we both "get" what the other is going through.   It has been a fun month for making connections :)

So now, here we are.  Logan is 1, Landon and I still have our heads above water, and we are ready to move on to a new adventure.  I am excited to see what this year has in store for us.   Already Logan is starting to show some major changes in his language and motor function.  No longer is he just walking, but he is climbing EVERYTHING.  I can't believe how agile he is!  It is fun AND terrifying, to watch him climb the stairs, or climb the picnic table and then, as boys will, tumble down said object.  (Always under close observation mind you).  He has also started signing some words like "more", "all done", and although he isn't signing the word for "bubbles" he knows exactly what they are.  When he wants to play with bubbles he comes up to me, looks me square in the face, and starts repetively blowing (as if he were blowing bubbles).  It's hilarious.  And adorable.  We are currently also working on the sign for "please", however, he thinks that "more" will work for anything so we see a lot of "more".  :)

Ok, so as promised, a CF update.  I am excited to share that we got another negative throat culture!   I was honestly worried that the last one was not a very good sample and therefore may have been wrong about being negative.  This one, I got to witness and it was a really good sample and I was thrilled to hear that it came back negative.  They also took a chest x-ray that looked clear as can be!  Also good news.  They had to poke him 6 times to get a vein in order to do labs.  I haven't heard everything yet about the results of the labs, but I did get his Chem/CBC results back and most of it is normal.  There are a couple of elevated liver values which worries me.  Usually those results indicate that some of the tubes in the liver are starting to get clogged, so although I haven't talked to the pulmonologist yet, I have a feeling we are going to be starting Pulmozyme very soon.  It just blows my mind the stuff my little one goes through.  He is so much stronger than me. 
The biggest change was nutritional stuff.  He plateaued in weight this month so we decided as a team that it was time to up the calories of the night feeds.  So he was getting about 216 calories a night of formula, now we are in the process of changing to 384 calories a night of Pediasure.  So we are almost doubling his nightly calories.  Plus, with more bolus feeds, and switching out Pediasure for formula, we are looking at giving him almost 1800 calories a day of just Pediasure.  Then whatever calories he gets out of the solids he eats.  It is insane to me that I could subsist off the amount of calories HE is getting in a day...

Well, that is it!  I will try to be more frequent in my postings.  I appreciate the support and love that you all give to our family.  We are constantly honored and blessed by all of you.  Until next time!