Is everyone ready???

For the Grand Ol New year?? This year has gone so fast in our family. And filled with Tons of Up's and Downs. We started 2006 with a Hospital stay at Hotel CHOP....3 days...and over 3 weeks of worry..... From there we had some uneventfull months...oh how I relish those!!


The summer was rather uneventfull....we had a great time camping @ Mountain Springs Campground...and cant wait to go back again this summer! Jacob loved camping, swimming and going for a train ride! We want to take him to see Thomas the train at strousburg railroad this year...he'd LOVE it!

Fall has been hard on us all. Jacob's battled MRSA since early november, and his doctors are speculating that he's had it longer then that cause of the granulation problems he's had at his site. He's been on ABX 2x's now...and I saw 1 spot yesterday i'm praying is not another boil.

Jacob's made some huge (by his standards) strides this year. He's saying "DaDa" pretty consistently now! He call's Daddy, Mommy and Caity ... DaDa!! LOL or as Jacob say's Dadadadada! He can now (thanks to Hilary) put on his own jacket! If you lay it out right...he'll put his arms in and flip it over his head! He'll lead you to what he wants...take you by the hand and put your hand on what he wants. His language is still severely delayed (obviously) but we at least know he's improving...and he's definetly not Austic. (nothing against autism...just didnt want to have to deal with 1 more thing) He is being tested though in 5 months...just to be sure before he starts school in September. They want to know what they are dealing with.

Gotta run...I will finish this later.... Hopefully this year!

Merry Christmas...Wishes to all!!

Click to view "Life on a Train"

http://www.inspiringthots.net/movie/life-on-train.php


Life on a train...

This is oh so true! And so well worded! I wanted to pass it on to all of you.

Thank you so much for riding the train with me & my family!!!


There are other video's on the site...Enjoy!

Merry Christmas!!

MRSAAgain for sure... :(

The site was cultured on Tuesday....I got the call this morning at work.He has a Staff infection (MRSA) at his G-Tube site. They are leaving him on Bactrim till the "sensitivites" comes back on the infection...then may have to change his ABX.We have a call into GI just to let them know...they are supposed to call me back tomorrow.This has everyone scared...I hope it turns out to be "no big deal" but he's had it 2x's in 31 days, his Ped is very worried about the G-Tube site...especially since that is what they cultured. And the bubbles around his belly, arm and leg. (mostly belly)

Weeeeeeeee!!!

OMG Jacob has a word!!! Just one...and really a sound more then a word! But he's using it in context!! We have *steps* of formula in our living room right now, Jacob's been using them to climb and practice stairs. Who said Therapy couldnt be formula?? LOL

Well he get's to the top...and wants to "Fly" so one of us picks him up and flies him in a circle then puts him down. Then he climbs back up...then down...then up...Ok .. you get the picture right? So we kept saying "WEEEEE" when he jumps off...

And now he'll grab your hand and go "weeee" and pull you over!!! I tried to get it on video...but had no batteries! Here's a picture of his stairs though!

Here we go....

Again...Just got back from the Ped's for Jacob. His spots showed back up Sunday night...4 on his belly. By monday morning he had 11 on his belly, 1 on his arm...toay 2 more on his leg and 1 more on his belly. They look like they have a "center" or "head" on them...and might be puss filled. (and a few small ones near his eye where the MRSA was the first time) We've also noticed when these show up his G-Tube site get's bad!! So they Cultured his G-Tube site, and started him on Bactroban and back on a ABX. Dr. W hopes it's not MRSA again...but did admit with his history it sounds like it's back. That's why they started the ABX right away.

There's that brick wall...

Again.

At least that's what I feel like I keep hitting. This week has just been rough, there's no other way to describe it. We were all "under the weather" this weekend....Even Caitlynn. Sunday night Jacob had a rough night too. Then lost weight this past week....but he'd been doing good and we cut some feeds. So now it's just trying to find that "happy number" which allows him to gain at a consistant rate.

His spots on his belly are back. Went from 4 last night...to 11 this morning. WAY SOOO ODD! Odd enough that the doctor wants to see him. So 1:50 tomorrow we get to see Dr. Walder again. And tomorrow morning he has Erin (teacher) coming, and a new nurse to orientate with him.

Wish us luck...we're hoping his MRSA is NOT back again...I hate putting him on antibiotic's for this crap.

Why is it.......

That the day you can't sleep, and decided to stay up to 2am. Is the SAME night the 2 yr old decides that 530 is the perfect time to wake up? I swear it's something against us mom's! Now...he's nice and comfy and in his stroller.....and I CANT go back to bed cause I gotta get Caitlynn ready for school.

Hummm....is this their plan to tire mommy out??

Or is it cause we upped Jacobs rate on his pump last week...and the 750 cc's of Nutren he get's overnight is finishing up earlier....and he get's up earlier! 100 cc's per hour...7.5 hours...maybe we should start him just a little later. *scratch head*

Oh well....off to another day!

Oh ya...and can SOMEONE stop Christmas from sneaking up on us???

Nursing...AHHHH

Ok...looks like we have Peds RN coming out to orientate with Jacob next week. It's been a long road of nurses...hopefully this is the answer to our Prayers!!

Jacob's doing pretty good this past weekend! Though (never thought i'd have to say this...) but his weight gain is TOOO rapid!!! AHHHH So we're backing down on his tube feeds, and replacing with water. Hummm maybe it'll make him a bit hungry to try oral feeds??

I'm off tomorrow, i'll call his nutritionist then and have her "ok" the plan. Looks like keeping him on his current curver could be hard! LOL