Tuesday, July 30, 2013

Joshua's Birthday week!!

I can hardly believe it, Joshua is turning 1 on Wednesday!  And what a year it has been.  The first part was filled with intense fear and uncertainty, but ultimately Joshua's year has been defined by joy, hope, and triumph over adversity.  We could not be any prouder of him!

Celebrating an early birthday with cousins last month at the lake.


Once again it has been a month since I last posted so let me catch everyone up on what has been happening with the Little Man.

We had an unfortunate ER visit and 30 hour hospital stay a few weeks ago due to a pinprick hole in Joshua's central line.  As always, it was a stressful, frustrating visit to the ER.  We sat there for almost 7 hours before being admitted to our room on the 4th floor.  Joshua was stuck 3 times for a temporary IV while his CVL was repaired, he had a vein blown in his hand, and his poor foot looked like a pincushion.  We finally had enough and refused the phlebotomy team coming down to try again for the IV.  It took me having multiple conversations with different doctors including the head ER doc, the attending physician, and our GI team over the phone and in person, but we finally agreed to a plan to check Joshua's blood sugar with a heel stick every 3-4 hours to monitor his blood glucose to make sure it didn't drop below 60.  I was satisfied with this plan because Joshua is not really bothered by the heel sticks since he was used to them from the NICU, however the IV process is very traumatic for him (mainly because he has to be restrained which he hates).  I wanted to do anything possible to spare him the discomfort of additional needle sticks. 

We finally got Joshua settled in our room for the night after an exhausting day where the little guy was up for 8 hours, not allowed to eat (for absolutely no good reason I might add), and held down multiple times against his will to be stuck by needles.  It was not a good day for any of us.  I realized around 10 pm that I hadn't eaten, drank, or gone to the bathroom in over 9 hours.  It's very strange, your body goes into a sort of hibernation where all of a sudden the usual bodily needs no longer interfere with your extreme concentration on what is happening with your child.  I have had this experience many times before in times of crisis, but never realize it while it is happening.  Only later once Joshua is peaceful do I reflect back on the day and realize my body should be dehydrated and famished.  He did not sleep well in the prison-like hospital crib so Joshua ended up curled next to me on the single bed while poor David had to sleep on the cold, hard hospital floor in a sleeping bag.  Every other room we have stayed in has had two sleep beds, but this floor apparently only supplies one.  Go figure.  Our nurse tried to tell me at one point in the middle of the night that it was against the rules for Joshua to be sleeping with me.  I must have given her some kind of warning look (I'm told I don't have a poker face) because she backed off pretty quickly.  This was the first and only night in my baby's entire life that he has not been hooked up to an IV.  Joshua and I were snuggling with abandon and loving every minute of it.  It was the most peaceful night we have ever spent in the hospital even though Joshua had to be woken up every 3 hours to have his heel pricked.  His line was repaired without incident and we were discharged the next afternoon.

Joshua is now on his IV only 12 hours a day instead of the long-standing 16 hour a day routine we have had since January.  This extra 4 hours of freedom is fantastic since the little guy has started moving around pretty actively in recent times.  Now he can be free from the bed in the morning to roll around and army crawl to his heart's desire.  Joshua hasn't quite gotten the hang of crawling forward, yet, although he can move backwards quite effectively.  He also pivots around in circles and almost looks like he's break dancing - it's pretty hysterical.  This guy cannot WAIT to run around, I am starting to think he will skip crawling altogether and go right to walking.  He really enjoys standing up while hanging onto something for support.  Joshua is still seeing physical therapy twice a month and it is helping, but I think he is progressing more on his own from pure desire to move than anything. 



Besides the big first birthday, Joshua also has his one year pediatrician visit on Thursday and his next GI clinic on Friday along with his family party on Saturday.  He has no idea how busy his week is going to be!  Personally, I am looking forward to Sunday when we hunker down together at home to recuperate.


On the social side of things, Joshua has been on multiple trips to the lake to both Hartwell and Oconee.  He has also stayed with friends in Atlanta where he played with his 3 year old friend and laughed hysterically at a black Lab puppy.  It may be getting close to time for the Folden family to get a dog again.  Joshua is happiest when he is out and about discovering new adventures.