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Monday, June 25, 2012

surgery update

ok, finally got time to update!

Sami went into surgery at 8am and it took anesthesia about an hr to do their thing and the doctor finally got started at 9am.  The doctor came out at 10:30 and said they were done.  He decided (last Thursday) to do something a little different with Sami's back.  A little background for those new to the situation, last summer she had growing rods placed in her back.  They were special rods that were suppose to slide on their own eliminating the need for surgery every 6 months.  Well the rods did not slide like they were suppose to so the dr had to go in there today and slide them and then lock them in place.  Well last week he decided to modify the rods to make future lenghthenings easier but forgot to mention it to us till after he did it:/.   He cut the rods, added a bracket to both rods and some screws to hold it in place and then he slide the rods about an inch.   We aren't upset by it but some warning would have been nice,.  We were not planning to spend the night.  But because the procedure was a little more involved she lost more blood (400cc) and has a larger incision and is in more pain.  So she is in the PICU on IV pain meds and needs blow by O2 when she sleeps.  She may need some blood depending on how her blood work -that they were suppose to draw at 2pm but haven't yet -looks.  As long as she is doing ok tomorrow she can go home.  She is REALLY, REALLY pissed she has to spend the night.  We weren't planning on this so we didn't pack an overnight bag.  We don't live too far from the hospital but not close enough to run home quick.  She wanted me to stay with her tonight so Joe went home with the other 3.

So far I have managed to piss off the attending because Sami refuses to take pain meds (besides Ibuprofen) by mouth.  And i won't force her to.  The nurse hasn't checked on us since we got up here.  She is doing ok pain wise.  She's been out of bed once to pee.  Her skin seems to be ok.  Some issues with the staff not listening to my instructions about the blood pressure cuff and sticky things- her EB is pretty mild now so its hard to make them understand what is possible if things aren't done correctly. 

I will update later. 

Monday, June 18, 2012

something cute:)

Sami at 15 months

Summer at 15 months

Grace at 15 months  

Joey at 15 months

So WHO do you think looks like who??

15 months old

Joey turned 15 months old on the 8th.  


Weight: 21 pounds 12 oz (only 1 pound gained since his 12 month apt which dropped him to about the 5% (from the 25%))

Height: 29 3/4 inches- grew 1.25 inches in 3 months which dropped him from the 25% to the 10% for height.

His head is still in the 95% but she isn't too worried since its grown about the same rate since birth. 

Even with the g-tube we can't get him to gain enough weight.  I have to reconfigure his g-tube feeds and how much he is drinking by mouth.   Apparently not enough.

He is still cruising around furniture and isn't ready to let go and walk on his own yet.  His new word/phrase of the month is 'my butt' :-)   He is defiantly ALL boy! 

His skin is doing ok as along as we keep wrapping him!  We tried not wrapping and it was a mess.  Took over a week for all the new  (HUGE) blisters to heal.  So back to wrapping it is.  Less for him to itch I suppose. 

He loves to be outside all the time which isn't great when you live in hot climate and have EB.  He loves to eat  (small amount) of just about anything but still has a BIG sweet tooth:)

I haven't been able to get many pictures of him lately but here is one of him eating pizza!  

Father's Day

Since it was Sunday I had to work as usually and do the grocery shopping after work.  The kids got Joe some of his favorite snacks (since he didn't want or need anything).   We had ribs for dinner and an Oreo cream cake for dessert.  Joey decided to end the day by screaming non stop for 11pm-1am and then on an off for most the night and a good part of this morning:(

Here are some pictures I took yesterday

Joey trying some of daddy's Twizzlers

 great pic expect for Grace with her hand in her mouth

 Joey is smiling...the girls not so much

 finally got the girls to smile and Joey thinks its funny:)

Monday, June 11, 2012

school is out!

The girls got out of school last week!  Here are a few pictures from their end of year celebrations!

Sami made A/B honor roll this last marking period and received the leadership award from her teacher!   One more year then she is in middle school!

Summer's end of year program.  She is the one in the royal blue shirt in the first row on the left (you can only see her head in the pic)

 A fun picture they did at school:)

Friday, June 1, 2012

I Refuse: an EB Fundraiser

There is an EB fundraiser going on now to raise money for an EB Organization called P.U.C.K.   They are raising money for EB research!  This wonderful Woman, Christie Zink, of The Little Light Images, put together a kit to raise money for this great organization!  

Here is a picture of the kit:

Kit includes: Tote bag containing t-shirt, awareness cards, water bottle, bracelet, and a car decal. This price INCLUDES SHIPPING. To begin, select the number of shirts desired. Next, click on "order now" to select your sizes. (You can always "go back" if you need to change this number.) Please make sure that the quantity you initially selected MATCHES how many sizes you select or your total cost during checkout will be incorrect. PLEASE ALLOW 4 Weeks from the event end date for processing and shipping. Thank you!

If you'd like to order one (or they have just T-shirts available too) you can do so here

My shirt is on the way:)

4 days left!!

I have had an AWESOME start to my part time gig as an Avon Rep!!!  I'd like to keep it going!!  Only 4 days left for the great deals campaign 12 has to offer!  Not too late to get great gifts for Father's Day either!  Free shipping on orders over $30 still available!!  If you are local (Orlando, FL area) order thru me via email and i'll deliver your items in person!!!

Check it out!