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Friday, February 24, 2012

EB Related Post

Lots of EB related tidbits:

You can read about a beautiful baby named Brystal who has RDEB here.


You can read about a little girl named Raquel who also has RDEB here.


Tonight Jonah's 3rd Annual EB Auction starts!  All proceeds go to Debra.  Check it out!  They have a lot of really nice and unique items up for bidding this year! 


A while back I posted on Facebook that a young boy named Seth w/ EB needed a forever home.  A wonderful family in the EB community who already had one adopted child with EB wanted to adopt Seth as well!  Everything was starting to fall into place; the community was coming together to help build an addition onto the family's home so Seth could have his own room.  Everything was suppose to be done and final by next month; then everything came tumbling down.  You can read all about it here (warning, grab some Kleenex, you will need it)

Wednesday, February 22, 2012

another quick update

Joey is still battling RSV:(  He is better than he was last week but still has a stuffy nose and a cough that gets so bad he can't eat/drink/breath sometimes.  Its not a constant thing so there isn't much that can be done.  

Sami is better but is still very tired some days and will take a short nap after school some days.  Her back is still bothering her and asked to go to the doctor (she HATES going to any doctor) so we nkew it was really bothering her.  They managed to squeeze her in this morning at 7:30am.  As soon as the doctor saw us his face dropped as he wasn't expecting to see her again until May.  He checked out her back and took an x-ray.  The good news: the rods aren't broken and everything is where is should be!  The bad news: the rods aren't broken and everything is where is should be:(  Meaning he doesn't know what's causing the pain.  At the top of one of her rods it looks like it might be rubbing up against her rib bone near her shoulder but there isn't anything that can be done.  Even if she had surgery right now, he can't guarantee it will stop the pain.  He could go in and snip the end of the rod off but its the rod that is moving faster than it should be so there isn't much rod left and she may out grow it sooner than we were hoping.  He gave her some Ladicaine pain patches to apply to the area to try to buy us sometime until after school is out for the year before he does surgery.  Hopefully it will help.  

I signed Grace up for pre-k for this coming fall.  She will be going to school with Sami and Summer!  But its just 3 hrs a day in the mornings and she isn't a morning person.

That is about it for now...got to get back to the laundry! 

Monday, February 13, 2012

Quick update

Just a quick update.  Sami is doing better.  She still has a LONG ways before she is 100% better but definitely 100% better than she was a week ago.  She went back to school today but needed a nap when she got home.  She started having pain in her back over the weekend...so bad that she'd cry out in pain a lot:(  At first we thought it was because she had been laying so much over the past week, but even with pain meds it wasn't getting better.  We were worried something was wrong with one of her rods and tried to take her to urgent care for a x-ray on Sunday but their machine was broken.  We called another location to see if their machine was working but after explaining why they said it would be better if we took her to the ER instead.  Which wasn't an option yesterday (i'll explain why it a bit) so we waited and see how she did after a nap and some Motrin and she was better.  Today she said she had no pain during school and very little pain this evening so maybe its not her rods.  One of the side effects of one of the medication she was on is bone pain so maybe it was that.  Its been 48 hrs since we stopped that med and the pain is less than yesterday and even less than the day before.  We are going to see how she is tomorrow and will take her Wednesday to the doctor if the pain isn't gone. 

Joey's nose started running on Saturday but that was it.  By Saturday night he was coughing and having trouble breathing.  Saturday night was ROUGH.  We all got very little sleep and then I had to be at work at 3:30am Sunday!  He was doing a little better Sunday morning but by late morning he was worse so I left work early to come home.  Of course by the time I got home he was happy boy and stayed that way for hours.  Then he woke up from a nap struggling to breath again so Joe took him to urgent care.  He has RSV:(  Mild enough to stay out of the hospital for now.   He is on breathing treatments and steroids now.  Steroids make him wild and hyper and not want to sleep.  He is doing better today.  His nose is still running and his cough is bad from time to time but not struggling to breath anymore. 

Hopefully we can all get healthy and stay healthy for awhile!  

RIP Baby Nate

A little back ground first- about 3 weeks ago I became aware of a family of a new EB baby up in the new England area.  I connected with them thru email and Facebook and even sent some of Joey's special diaper covers and gowns for baby Nate to try since he had a lot of skin involvement like Joey.  Last week they found out Nate had Junctional EB.  Friday he started to go downhill very quickly.  He got his wings Sunday morning:(  You can read about him here and leave your thoughts and prayer for his family in the guestbook.  Thank you to those that have already signed it.  I know it will mean a lot of his family. 

I know I can't save them all, but it still hurts when I hear about losing another one. 


This was one of the songs we played at Garrett's funeral.  I dedicate it tonight to Nate and all the EB Angels out there:


Go Rest High on that Mountain by Vince Gill


I know your life on earth was troubled
And only you could know the pain
You weren't afraid to face the Devil
You were no stranger to the rain

Go rest high on that mountain
Son your work on earth is done
Go to Heaven a shoutin'
Love for the Father and the Son

Oh, how we cried the day you left us
We gathered round your grave to grieve
Wish I could see the angels' faces

When they hear your sweet voice sing

So go rest high on that mountain
Son, your work on earth is done
Go to Heaven a shoutin'
Love for the Father and the Son

So go rest high on that mountain
Son, your work on earth is done
Go to Heaven a shoutin'
Love for the Father and the Son

Go to Heaven a shoutin'
Love for the Father and the Son

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:) 

Prayers for Sami

Sami is sick....really sick....she has Pneumonia:(  It started out last week with a fever and cough- we have all been sick over the past 2 weeks.  She stayed home from school for two days and had the weekend to rest as well.  Sunday night she seemed/felt better and just had the never-ending cough that seems to be going around.  She wanted to go to school Monday.  She went armed with water and cough drops  to school.  She came home after school and went right to bed:(  She NEVER naps.    So once Joe got home he took her over to urgent care....she is now on antibiotics (thankfully just once a day kind) and breathing treatments every 4 hrs.  The doctor said she could return to school on Wednesday but while she hasn't gotten any worse, I don't think she is any better so I am not sure if she'll be back to school tomorrow or not.  

Today was 6 weeks since she got her ears pierced and was able to change her earring today.  She could have cared less... that is how crappy she feels:(