Settling In

I guess I didn't realize how much time had passed since my last post.  We have been settling in to the new routine, new equipment, and new support. 

Lennon's nurse was able to start the day after school was out, which was a huge relief considering that grandma had to go back to the real world.  I love our nurse.  She "gets it."  Sure, she may never have had a case like Lennon before, but she understands the stress of hospital stays, the burdens placed on parents of kids with special needs, and the benefit of having an extra set of eyes and hands.  When we first talked about nursing care for the summer, I wasn't sure if I would want someone for the whole number of authorized hours.  Within the first 2 days, I knew that we would stick with the "regular schedule."  Unfortunately, she won't be "ours" forever. She has another placement throughout the school year.  Later this week, we will meet a new nurse who may take over as our year-round caregiver.

We had a post-hospitalization appointment last week. Lennon's weight is up to 28.4 lbs.  I think that is the highest weight EVER!  It's also at least 2 pounds more than when we left the hospital.  (Thanks for the ice-cream and tater tots, grandma!)  The g-tube makes it so easy to ensure that enough calories are going into him. It also makes it easier to give meds.  Lennon improves every day.  I was told that I would be surprised by his strength and perseverance, and I definitely have been.  A month ago, I didn't know if he would be able to swallow.  Now he's eating, rolling, making lots of noise, and regaining a lot of his strength.  Even tonight at our weekly dinner with friends, everyone commented about how good he looked.

Even though he is doing well, we are still very aware of the fact that we will have many more hospitalizations, doctor visits, travel expenses, and needs for medical and support equipment.  We were approached a few months ago about having some sort of fundraiser for this.  Sunday, we met to discuss our event All In for Lennon which will occur September 8th.  We would like to have a silent auction, raffle, and a Monte Carlo night in addition to a brisket dinner.  View the event page HERE.  More information will be posted as it comes available.

For now, I'm just happy.  I sleep better knowing that Lennon improves every day.  I don't feel confined to the house because I'm afraid of leaving.  I have been able to spend some legitimate quality time with the big kids and TEACH them some things that we've been missing.  Honestly, one of the best moments of my summer was being able to brush and braid Hannah's hair, knowing that someone else was taking care of Lennon's morning routine. I'm happy. I'm grateful. I'm proud of my family.  Here's to the beginning of a beautiful summer.