Tuesday, April 22, 2008

Day 100!

So I got up today after a great night's rest. Mom and I slept from 11:30pm-5:30am straight! and then we got up with the boys at around 8:00. Mom has been waiting for a while for a good night like that. We got up and out the door to take Joshua and Jonathan to Gramma's and then me to see my Cardiologist Family. I know I've told you this before, but they are just so great there. Miss Peggy came by to see me (she never misses me!). She told us how she had to work in the NICU I stayed at and she saw all these great signs on the baby's cribs that had stickers and neat decorations. She made mention of it to someone who always works there and she told Miss Peggy that "a mom donated" all the craft items.....THAT'S US!....we were so happy to hear that they were using it all and everyone was enjoying it. We actually have more items to get there.....a friend of Mommy's is a Creative Memories consultant and her whole group donated a bunch of scrap booking supplies! We just want to brighten the days of the families of my sick baby-friends and give those other sick babies some nice decorations to look at to take their minds off those lights and alarms that go off all the time. I know some of you guys (my blogger friends) wanted to donate some stickers and paper and such and we are still trying to figure out the best way to do it....maybe just sending it right to the NICU would be best?...I'll let you know.

So my cardiologist ....we'll call him Dr. J instead of typing C-A-R-D-I-O-L-O-G-I-S-T 80 bazillion times....that's tough on these crooked little fingers of mine... so he came in to see me. He is so great...he loves me.....even though he can't work a computer to check my blog!...but he makes sure Miss Peggy keeps him updated....I even put a picture of his wife (one of my nurses....he doesn't just send his wife to his patients houses....she comes on her own terms with her own company) on in hopes he would get on....this was weeks ago!...no dice.....so maybe his wife and kids will get on...you better comment if you do end up on! Anyways, Dr. J brought two other lovely doctors in to meet me...trying to hook me up there...thanks Doc...always looking out for me ;) . Actually one of them took care of me while I was in the NICU....I remember her with a calculator trying to figure out how many ccs the nurses should feed me....Small world!...I told her to check me out on my blog too. It was great to see her. Mom says she like it when people see how well I am doing...especially from the NICU and other medical professionals. There is so much bad info about Trisomy 18 out there....it's kind of like the news.....you never hear that 98 million cars make it safely to their destination.....you only hear about that one crazy idiot who drove off the road. Trisomy babies like myself are a blessing.....there are so many of us out there who live life great and loved as long as we have it.... not all of us live a tortuous life and are "better off dead" like so many medical professionals believe. That one NICU doctor (won't share names) told Mom she could just let me starve....don't bring that up to Mom....you'll get an ear full about her....anyways....it is proof that God does not revolve around statistics and although the "odds are against me" our God reigns over all. He may take me at any time, but same for you and the person next to you and anyone else....yep, odds are against me but God is for me.

Hey guess what my oxygen levels are at?!?!? 76%!!!! That is up 22 points! Dr. J said that the low reading last time could have been effected by my jaundice...who knew? So I am not ridiculously low anymore....that was GREAT news. He was happy about my yellow poop as well.....that yellow poop always brings smiles to people's faces....personally my nose can't stand it!

So that is the only appointment this week.....this is our week of no appointments with the exception of cardiology. And what a great week so far for it....."the sun is up, the sky is blue, it's beautiful and so are you..."oh, I must have caught the "bust out in song" chromosome from Gramma! Well, I will fill you in with the rest of my 100th evening later. Talk to you soon. God bless.


Angel & Randy said...

Wow....just wow...100 days!!! We pray for you daily! We are so happy you are doing so so so well. Lots of Love from Tennessee!

Jessica said...

Praise God for these 100 days, little Jacob! Praise God for the good news about your health and for each pciture of your sweet little self that your wonderful family shares with us : )
Praying for you, as always,
Jessica in Italy

Anonymous said...

100 days already, way to go Jacob you are such a special young man, keep living everyday to your fullest and enjoy this week off playing in the magic clubhouse with your brothers!!!
love, judy

Jessica mommy to Alex/ RTS said...

Happy 100 days!!!!!!
Here is to yellow poop, and sleeping long periods of time!!!

Praying for you sweet Jacob.

Anonymous said...

Yahoo and Yeah, it's the 100th Day! Jacob, you are amazing and reaching so many people each day of your life!!!

When I praise God for you, I also praise Him for your Mommy, Daddy, Jonathan, Joshua and all your fabulous family. You are so very special and loved by so many! I can't wait to see photos of you coming down the Magic Clubhouse slide. Cyber hugs to you.

Love - Lynne B.

Laurie said...

Happy "Day 100" Jacob. You amaze me every day as you beat the odds that the world has set up. God does not have odds, just lots of love and miracles. You are a miracle and I am so glad you are my friend:) Have a great day!!

Love, Laurie in Ca.

boltefamily said...

YEA! So happy to hear that you are doing well and thriving. You are such a blessing! Just imagine the number of hearts you have touched in 100 days! I assure you it is more than many touch in 100 years! You are so loved!

Anonymous said...

What a blessing! Praise God for 100 days of your precious life! God is good and will continue to bless you and your family! Happy 100 days to you!



Cathy said...

Yea for a 100 evenings and praying for hundreds of millions more. Love, Cathy & Annabel

Michelle said...

Yay for yellow poop and better ogxygen levels.

There are lots of people out there that have messed up thoughts about differences!! I'll send you some earplugs!!