Thursday, October 23, 2008

Go us!

Ahh. A new day. With Tuesday's fiasco behind us, we're moving on and we're doing just fine. We've even managed to have a little fun today.

Dylan was an OT rock star today! Here are some notes from his therapist: "Dylan did great today. Was wide awake and ready to work. We worked on different positions, worked on tracking, reaching and kicking. On his back, he turned head about 45 degrees to both sides and is trying to bat at objects. On belly he is starting to turn head about 45 degrees in both directions. Upright head control is better. At least 30 seconds without a head bob."

I am SO proud of him! Here he is working on keeping that head up. This is no easy task for a little one with quite low muscle tone. Go Dylan!

After his OT, he was very tired and fell asleep. Cassidy and I ventured outside. And froze.


Aaron and Amy said...

I'm glad things are looking better today. It sounds like D did great in therapy! Way to Go! Cassidy is SO cute - thanks for sharing pictures.

I wanted to share a couple other things with you before D's surgery. One lesson we learned was to not be afraid to speak up and be an advocate for your child! Let Mama Bear come out if you have to!

The vast majority of the doctors and nurses were SO good. They took really good care of us. But, there was one day where our nurse was a bumbling idiot - seriously. He fumbled, was clumsy, had bubbles in the IV line every time he came to give a medicine and we had to correct him. Granted, we might have made him nervous being that Aaron is a doc and all . . . but still . . . we were trying to be "nice," and realize that everyone has to learn, but after 12 hours of feeling like I had to protect my child from his nurse, I asked the charge nurse if he could be re-assigned. They were so understanding, and after we got a different nurse, we relaxed so much and breathed a huge sigh of relief. When you can trust the hands that are caring for your child, it makes all the difference in the world. So, don't be afraid to speak up!

Also, M's central line "migrated" and had to be removed - meaning that every blood draw they had to stick him instead of getting the blood from his central line. (Central lines are awesome for that!) Anyway, they kept ordering a Potassium level, and it kept coming back "hemolyzed," meaning the blood was no good because the cells broke while they were squeezing his little toe. So, they kept re-ordering it, but kept taking the blood the same way. The 3rd time, I said,"Does he REALLY need this test? It's probably just going to be hemolyzed again!" and they said actually they could do without the test. Lesson learned: Don't be afraid to ask if he REALLY needs a procedure or a poke, especially if it seems superfluous or unnecessary to you. They could always say, "yes" and explain why it really is necessary.

Third, we had people come in all the time - Respiratory, lab, etc - and it seemed like they would come RIGHT after I got M. to sleep. It's o.k. to ask them to come back later - they really don't mind.

There was one night in the hospital where we had a really bad night - no sleep - and I had just gotten M. to sleep and not 10 minutes later lab came in to draw blood. He screamed for the next 2 hours before I got him settled down again! That day, our nurse put a "Do not disturb" sign on our door, and only let in people that were REALLY necessary - and she would ask us if it was o.k. first. We really appreciated that. So, if you need some undisturbed time, don't be afraid to ask for it.

I don't want to scare you - overall, the hospital and our care was incredible - but we did learn a couple things that maybe can help you out. It will be tough, but it wasn't as tough as I was expecting it to be. You'll get through it, and then be shocked by how great life after surgery can be!!

Keep surviving! We're thinking of you.


Kimberly said...

Go Dylan. He is getting so strong. I am such a proud auntie.
I must say Cass is looking very stylish! Glad to hear about your nice day!

Cleo said...

YAY!!! Go Dylan!!!
Go Cassidy!!!
Go Laurie!!!
Laurie, Dylan is a strong as you are, everything is going to be OK ~ . Thank you for sharing these beautiful pictures. Sending positives thoughts and vibes you way. :)

Karly said...

Yay for better days! (Especially after crazy ones).

Lis said...

Dylan is a OT Rockstar!!!!

Cass is so cute all bundled up!

Lisa said...

Ahhh, that's so wonderful Laurie!

Cathy said...

Way to do big D!!! No wonder he was tired afterwards...a well deserved nap.

ITA with Amy...we had some of the same issues with Lily...speak up! We even had a respiratory therapist who managed to put Lily to sleep with a treatment...when the nurse came in to take vitals the RT told her to leave!! She said, this mom needs to sleep and you are not going to wake up this baby to weigh her!

I tend to usually not speak up...but when it came to my out!!

Our experience was overall very good.

I'm off to go post about Lily's cardiologist appointment. Take are in my thoughts and prayers SEVERAL times a day!

Andi said...

What an awesome OT appointment :) I must ask...where did you get Cassidy's puma jacket? It's adorable. Your children are beyond gorgeous.

Jeanette said...

Sorry to hear about the fiasco earlier in the week. I am glad that things are going better today.

Amy said...

Dylan is amazing and I'm sure will continue to amaze us everyday.