Monday, June 15, 2015 – Belly Laughing, “Crawling”ave , Rolling

The only medical news was the letter my parents received from CareFirst, indicating that they will no longer cover my Prevacid solutab that I’ve been taking the last couple months. CareFirst indicated that I need to switch to a generic version of the drug. Many people have told me and my parents that they take Prevacid and it’s an over-the-counter drug, which is true, but for some reason…I’ve been prescribed a version that retails for $465/month/approx 30 pills. My parents were only on the hook for the $65 copay. So after discussions with my Pulmonary team, I’ll be giving the over-the-counter drug a try, starting in August. Let’s hope the switch does not have an adverse effect. Thanks again to my team at Children’s for working with me and my parents to find an alternative.

Watching the Cup with Dad

Also, I have a new cousin. Some of you may remember nurse Emily (Mom’s cousin), who looked after me in the Arlington Mother’s and Baby unit prior to heading to the NICU- well, she had her second boy! Sorry, no photos, but both Emily and Lucas are doing great.

My cousin Hayden trying to make me laugh 🙂

I’m beginning to get really good with my hands. I’ll take the pacifier out of my mouth, put it in (sometimes upside down), then pull it back out and sometimes throw it on the floor. I’ll then put my whole fist in my mouth.

Cranking out some pushups with Dad

So here are some of the recent milestones I’ve reached.

• 03 June – Belly Laughing
• 10 June – “Crawling” (or inch worming), not really crawling, but I cannot be left on a bed because I can certainly move across the bed and fall off now. Just need to engage my arms more to be officially crawling.
• 15 June – Rolling Over

Would Rather Be Fishing…

So this week I’m going to continue to work on my rolling over and crawling.

Thursday (April 23, 2015) Update

This week’s post highlights updates to my meds and a visit to some family on Dad’s side down south. Once again, sorry for the lag time between posts. @ Medicine – I took Zenpep from Wednesday (6:00 PM) to Monday morning (5:45 AM), but switched back to Creon because I seemed to be spitting up and vomiting more than before while on Zenpep. I also had an increased number of stools. I took my first Prevacid tablet Sunday since Walgreens shut down their pharmacy for no known reason and I wasn’t able to get it on Saturday evening as I had hoped. Hopefully the Prevacid and the switch back to Creon works well and I begin to feel better. So far, I’m cautiously optimistic that this change is favorable, seeing as I’ve had up-and-down days when changes previously occurred with my meds. Below is my new monthly prescription of Creon (enzyme medicine). The chapstick, quarter, and “average” pill bottle were to help show scale, but I don’t think they even do it justice. In addition to the 2.5 Creon pills with every feed, I take 1 Prevacid solutab daily. I still do Albuterol once daily, take AquADEK vitamins once daily, and do my chest physiotherapy twice daily.

Current 30 Day Supply of Enzyme Meds (600 pills)

@ Family – On Saturday (04/18) I took a trip down south to see one of my great grandmothers. My dad’s Grandma is 92 years old and doing well. She loves quilting, playing cards, reading the bible, and spending time with her family. While there I also saw a Great Uncle and two Great Aunts. All of them were so excited to see me, but especially my super sweet great Grandma. My aunts and uncle said they haven’t seen her smile so much in a long time. Glad I could bring some happiness her way. I’m the first Peden boy to be born twenty five years, making Dad’s youngest brother Jacob, no longer the baby boy to carry the family name. I’m really looking forward to another trip down south to see her and the rest of the Dad’s family.

Great Grandma Peden

@ My Fussy Side – And since everyone thinks I’m so happy all the time and nothing looks wrong with me, I thought I’d mix it up a bit this week and let you see my other side. It’s so funny because TMZ is always so excited to see me, but when I start crying, she’s like Peyton Manning yelling “Omaha” and performing a checkdown, handoff to someone within 40 second play clock. It’s sort of funny when you think about it. Anyway, here’s a few of photos of me not having the best of times. Those of you pictured with me should not be offended. It’s not you, it’s me.

Screaming during Chest PT with Dad

Here I am on Sunday at Bama’s. This is usually par for the course.

Bama, I want my parents.

Here’s about the only time during my trip down South, where I wasn’t in a good mood. I slept the whole way there and back in the car and was pretty playful while there.

Put me Down!

And lastly, here I am…going “postal”. Just kidding. Dad needed to get some stamps so Mom can mail off some long overdue Thank You cards. For those of you have been so generous and so thoughtful, Mom and Dad know they owe so much to you all and they are just waiting for a little downtime so they can sit down to write the remainder of the Thank You’s.

Going Postal

My next pulmonary checkup is on Tuesday, April 28, so stay tuned for updates following that and whatever fun I get into this upcoming weekend.

Wednesday, April 15, 2015 (Tax Day) and Two Appointments at Children’s

Let me start by saying I’m sorry my posts have gotten fewer and farther between, but truth is…it’s hard for me to type on this MacBook and there hasn’t been too much new to report. I’ve mostly just been chilling with my parents.

Blogging

Met with my surgeon, Dr. Anthony Sandler, today for a check up and he said everything looks great! No distention and that I look great…I couldn’t agree more.

Mid Abdominal Transverse Scar

Next, I met with my Pulmonary team. Because I’ve been so uncomfortable, they are switching from my current pancreatic enzyme medicine, Creon, and onto Zenpep for a week to see if things improve. To the casual observer, they might not notice a difference between the two. I still ingest this prior to each feed by having the white capsule pulled apart and the granules sprinkled onto applesauce. The granules appear a bit larger than that of Creon and more importantly, contain a bicarbonate which my Pulmonary team hopes will help reduce some of the gassiness and discomfort I currently have.

And maybe, just maybe I spoke too soon on how well the Ranitidine was working because Mom mentioned to my Pulmonary team today that I’ve still been fussing a lot since we last saw them and they are going to switch me over to Prevacid which is similar, but a little stronger. This switchover will not occur for a few days as they want to see if the enzyme switch is helpful first. Too many variables would mean they could not determine what is working for me.

Almost forgot to mention that while at Children’s we ran upstairs to meet with my primary nurse Alicia since she knew we were in the building. She was looking great as always and was so happy to see the three of us and said I’ve gotten really tall. She also tells Mom that my “colic will last 100 days” and not to worry. Alicia also told Mom to give Dad some hall passes to get out from time to time.

Lastly, the Nats need to pull their heads out of their a**es. They’re batting .212 as a team and have ten errors through nine games and thats thanks to generous scoring as multiple balls have not been caught in the OF which should have been. Coach Williams, I’m only about 7 miles away from the ballpark so give me a shout if you’re looking to turn this 3-6 season around.

Waiting to be called up

Now time to publish…

Publishing Post