A Normal Night

This kid loves to watch his dad mow the grass!

Cuddling with the babes before bedtime!

How to remove Collodion

Okay cow loving friends... I've been meaning to share this for awhile and had fogotten until now.  When Luke had his EEG, the tech used collodian to glue the electrodes to Luke's head.  I was shocked to see collodian being used in the hospital after using it for years with cattle.  The tech told me they used it like "water" in the neurology department to glue electrodes for EEGs and it just about made me cringe to see it being slopped all over the place and wasted as I've been all too familiar with it's expense when purchasing it from the pharmacy.  As soon as I learned of her intent to slather it over Luke's soft, fragile hair and scalp, I immediately bristled and asked if we had any other options for securing the electrodes.  She reassured me that they could remove them safely and easily without damaging his skin or hair.  I have to admit that I was amazed when she used Mavidon to quickly and easily remove the glue following the test.  This was much easier than using acetone or rubbing alcohol like I've been accustomed to in the past.  I googled Mavidon after returning home and learned that it's relatively inexpensive and I think it would be worth trying next time we're bagging cows. 

http://mavidon.com/index.php/collodion-remover.html

A Night with Friends

In the midst of our daily hustle and bustle, we haven't had much opportunity to spend time with friends over the last few months.  Not only did I get to spend a majority of last Thursday with one of my besties, Mary, we also attended a cookout last night with a group of couples who we have been friends with for many years.  The guys in the group all went to elementary, middle and high school together and somehow, 13 years later are all still really close and over the years, the wives have become great friends as well.  In just the past few years, our group has grown to include quite a few children and we had fun last night hanging out and watching our kids play together!  Somehow I missed a few of the dads in my photos.... but regardless, here's what I captured....

Happy Father's Day

We took Dustin on a little Father's Day outing yesterday... we started the afternoon with a picnic lunch at Pleasant Hill Lake, where we watched the boats cruise the water and the crazies who were content swimming and playing on the beach with only a 78 degree temperate!

 

Next, we took to the course at Mohican Adventures Putt Putt, where Dustin helped Matthew golf for the first time.  We were both impressed with Matthew's attention to the ball and his willingness to play hole after hole all the way through to number 18.  Matthew got a bit fixated on a water feature (also known as a goldfish pond) on the 17th hole and when combining his desire to jump in (which we weren't too excited about) and the fact that he hadn't napped yet, we did have a short meltdown as noted in the second to last photo.  Luke slept peacefully the entire time we were putt putting and only decided to wake up as he was in his car seat and ready to head home. 

We finished the afternoon with a stop at the dairyette in Loudonville before heading home to put on jeans for a cook out with friends.  

Matthew, Luke and I are so blessed to have Dustin in our lives.  He is a great role model and an awesome husband.  We love you!!

Learning about Blood & Neutropenia: Questions

Blood is made up of red cells, white cells, plasma, and platelets. The functions of each are:

• Red cells or erythrocytes  - Carries oxygen to and carbon dioxide from cells in the body.
• White cells or leukocytes - Defend your body from germs, viruses, and bacteria
• Plasma- Carries nutrients and suspends the other 3 components
• Platelets or thrombocytes - Very important for clotting blood and repairing vessel walls

Blood also contains "clotting factors", which are also vital to the clotting process.

We know that Luke has some level of Neutropenia, which is a low neutrophil count.  Neutrophils are a component of a white blood cell.  Of the components of the WBC, the neutrophil is the best at "attacking" infections and we can see the work they do externally as they are responsible for creating scabs over open wounds. 

I've learned about a drug called "Neupogen" that can be administer daily to boost the production of neutrophils, however as Luke's ANC isn't severely low, it isn't something we've considered to this point and our hematologist has shared that she will want to complete a bone marrow biopsy prior to prescribing this medication.  That said, after speaking with a friend today whose son also has neutropenia, I have some questions (I have to give my friend Gretchen some credit here as she helped me brainstorm some of these ideas over lunch today...) 

• Should we consider Neupogen as a pre-op methodology to help prepare Luke's body to fight off potential infections following his operation?
• How will his recovery be implicated if he has a low ANC going into open heart surgery?
• We know that he will be on the cardiopulmonary bypass (aka the heart-lung pump) and will receive a blood transfusion as part of the operation - how will blood products affect his ANC?
• Will his CBC diff be ran regularly throughout the surgery to monitor his ANC and corresponding ability to fight infection?
• Can we test for potential bacterial infections leading up to the surgery (like the week before?)
• Should we do a 6 week blood study with Luke to validate he has cyclic neutropenia?  (i.e. two draws a week for six weeks?)

Additional Neutropenia Resources:

National Neutropenia Network

Understanding Severe Chronic Neutropenia: A Handbook for Patients and their Families

Major Milestone #3: Rolling Over

I sat down to write about milestones reached thus far by baby Luke and initially, I just outlined the two major milestones I thought he'd reached so far.. #1) Using his neck muscles to hold his head up and #2) resting on his elbows during tummy time with his head elevated and his shoulders and the top of his chest off the ground... but I realized while I was thinking about those two accomplishments that Luke has actually achieved so much more!  He's also succeeded with tracking objects with his eyes, turning his head 90 and later 180 degrees while tracking, reaching for objects, bringing his hands to midline to hold and transfer an object, batting at toys in his activity gym, laughing, cooing, and responding to verbal stimulation, attempting to hold his bottle while eating, etc. etc.... things I maybe took for granted as "normal" accomplishments with my first born. 

Matthew naturally developed his gross and fine motor skills without much intervention from us other than through normal playing.  This time it's different.  We have been trained to be very intentional with how we interact with baby Luke.  Luke receives physical therapy ten times per month, which works out to be at least twice and sometimes three times per week.  We are all invested in Luke's development and his team of caregivers includes three babysitters, two parents and a grandma that care for him regularly.  We have all committed to learning the various exercises taught to us by his three physical therapists and we focus on incorporating them into his care everyday.  If we think we are doing a lot... it's nothing compared to the routines we put Luke through.... lots of various positions, exercises, and thoughtful playtime.  Someone seems to always have something in mind for what he should be working on next. 

The best part is that when he succeeds, we all feel the joy that comes with our combined and continuous hard work!  It's kinda wonderful to be experiencing each developmental milestone with such exuberance and joy and we were beyond thrilled this week when Luke finally rolled over for the first time on Tuesday, June 11, 2013... when he was 5 months and 20 days old, something his brother did nearly 2 1/2 months sooner at 3 months and 3 days old.  Regardless of when milestones are reached, I love both boys with all my heart and for different reasons they each fill me with an unmeasurable love.  I read this blog post recently by a fellow momma of a child with Down syndrome and I thought she described the topic of milestones so beautifully... He is passing her up

Flying planes

Matthew did something new tonight... He picked up a puzzle piece with a plane on it, held it above his head and "flew" it. After a bit of flying, he'd crash it and start over. Neither of us have ever told him or shown him how to fly a plane. It's so awesome to see his little brain working!!