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Tuesday, February 7, 2012

11 months old

On Wednesday Joey will be 11 months old!?!?  How in the world is that possible??  Wasn't he this tiny little baby pictured here?







And here is Joey last night

(not fond of hats)


Stats:

Weight: about 21 pounds

Height: around 28" which is where he's been at for awhile but I am wondering if they measured him wrong last time he was at the doctors.


Activities: Playing in his Pooh walker; playing with his sisters; eating.  He likes to stand from time to time with help.  But does not have enough strength in his legs to stand along for more than a couple of seconds.   Still does not like tummy time and still doesn't roll over.  He acts like he wants to crawl but I don't think he has a enough strength to actually hold himself up to crawl.  Hopefully he'll just skip crawling as I foresee him being the kid who does many face plants while crawl and his face is affected enough we don't need anymore boo boos.  He can say DaDa, shake his head no, like to growl when he is tired or really mad about something.  HAS to have something to drink and/or eat if someone around him is doing the same.

Sleep:  some days/nights are better than others.  He mostly sleeps 3-4 hours at at time at night; sometimes he'll go 5-6 hours but not very often.  Naps are usually 30-45 minutes 2-4 times a day.

Skin: compared to 11 months ago his skin is much, much worse.  He is no way near as better as I thought he would be by this age.   Probably close to 60-70% of his skin surface is either an open wound, blistered, a recently popped blistered or wounds in varies stages of healing.  We still wrap him from the neck down every day.  Some areas (his arms and lower legs) are  just covered with Tubifast for protection most days.  But the rest of him has 3-4 layers of bandages for healing and protection.  

I figured out the other day that Joey will be 337 day old tomorrow (same as 11 months) and in those 337 days I have probably spent over 650 HOURS prepping, changing and cleaning up bandages!  And by his first birthday it will be over 730 hours!  that is just over a months worth of time, just spent on bandages alone.  Doesn't count diaper changes, or tube feedings, or the countless number of doctor appointments.   I know other families easily spend double that amount of time dealing with bandages as well, and I am not complaining.  Its totally worth it! 

Over the past 3 days I have spend prepping 10 days worth of bandages.  I do this 3 times a month.  It saves SO much time each day.  It takes me about 6-7 hours to open the packages cut the pieces, wash/dry/cut the Tubifast, and sort them into 10 sets of bandages.  I store them in gallon size Ziploc bags to keep them safe and dry.  Its also handy to have them ready to go in case he is admitted to the hospital or we have to leave quickly for some reason.  Just grab the bags and go!

Here is a picture of after everything is cut up- before I started cutting it was 52 1/2 pieces of 6x8 Transfer; 5 pieces of the 8x20 transfer; 12 1/2 pieces of the Lite; 10 pieces of the 6x6 Mepliex; 2 1/3 pieces of the 8x8 Mepliex; 10 12" piece of yellow line Tubifast; 20 13" pieces of the blue line Tubifast and 80 8" pieces of the green line Tubifast (I use two pieces on the places he only has Tubifast on); 10 rolls of 4" gauze and 20 rolls of 3" gauze.  So just times all that by 3 and that is how many bandages he uses in a month.  It costs about $8,000 in bandages/ointments/bath additives for Joey.  Thankfully the insurance pays for 90% of it. 






and here is everything bagged up



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Here are some more recent pics of Joey (and Summer and Grace too)



 watching Grace and Summer feed the ducks




some of the ducks looked really mean looking!
the 'cow" duck as Gracie called it



happy boy!!




I zoomed a little with the camera but that is the biggest pine cone I have EVER seen! 







snack time




our collection to take home:) 

1 comment:

  1. he is getting soooo big!! You are such a wonderful Mommy!! I love reading when you blog! You keep it real, but you also keep it comical (most times). Joey is such a sweet little guy, and your girls are such awesome big sisters! A truly beautiful family!! I am blessed to know you!

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