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Tuesday, December 18, 2012

December 18th

To some people today is just an ordinary day; a week before Christmas.  But for us it's the anniversary of the last time we held our baby boy, Garrett James.  Today it's been 8 years since he took is last breath; 8 years since ours lives were changed forever; 8 years since our hearts were broken.  

In the past 8 years I have learned:

- that time does NOT heal all wounds

- who my true family and friends are

-hearing of the death of another child is incredibly heartbreaking (needless to say this week in particular has been vary hard to comprehend)



Even after 8 years I still remember:

-the exact words from the doctor that he was gone

-the conversations I had with friends and family when I called to tell them the news

-planning his funeral

-all the people who came to his funeral


And ever since that day 8 years ago I /we

- still celebrate his birthday every year

-still wonder what life would be like had he lived

-tear up when I hear/see an emergency vehicle with their lights/sirens on

*******************************************




In loving memory: 
Garrett James
December 6, 2004 ~ December 18, 2004

Thursday, December 6, 2012

8 years later...

Yesterday my status update on Facebook was the following:

"my reality is every parents worst nightmare" 

While it is sad, it is also very true.  And I know too many other parents with the same reality.  No parents wants to celebrate their child's birthday without them.  But today that is what we are doing.

For those that do not know the story 8 years ago today at 12:40pm Garrett James was born.  Born with EB and just a little over a month early he weight in at 5 pounds 13 oz.  Little did we know, his time here on earth would be short; very short.  Just 12 short days later as quickly as he born, he was quickly gone. (for those that don't know or don't remember he died from complications of a blood infection not caught soon enough by the doctors)  If you have never heard his story before, you can find it here.

I have done a blog post on this day for the past 7 years and each time I never know what to say.  There is nothing new to say, no new pictures to post.  But I can tell you that time does not heal all wounds; the pain doesn't go away; it just becomes easier to live with.  I wonder how he would look like today.  Would he have blonde curly hair like Summer and Joey?  What would his favorite subject be in school? Those are questions I live with every day; questions that will never have answers.

After he died I was determined to do something good in his memory to help others so that his death was not in vain.  That is when I started Garrett's House  a web site to educate others about EB; help new EB families so no one else would go thru what we went thru and to promote awareness.  Like many web sites, Garrett's House evolved and is now called In Garrett's Memory

So tonight when everyone gets home from school and work we will eat dinner together, open presents and build our traditional gingerbread house and remember Garrett.  And eat cheesecake; can't forget the cheesecake!  Though his time on Earth was WAY too short, I know the impact he had will last a long time.





Sunday, November 18, 2012

Catching up

Long time no blog...we have all been sick:(  Some more than others.  Summer missed two days of school; Grace missed 4 days; Sami missed 3 days; Joey was sick for over a week and Joe almost 2 weeks and I have been feeling crappy for 5 days now:(  I hope this is the only time we all get sick at once this year!  

Everything else has been the same school, homework, girl scouts; working; cleaning, laundry, cooking, etc...

Tomorrow we find out if/when Sami needs surgery to lengthen her rods.  I will post about that once we know more.

Here is one pic I was able to get off the camera:)

   


Friday, October 26, 2012

EB Awareness Week





EB Awareness Week is from October 24-31, 2012.  I am going a series of blog posts on EB, you can find them on my other blog: 

Sunday, October 21, 2012

Fall? What is that?

The calendar may say it's Fall, but it sure doesn't feel like it here!  85 and sunny most days!  The humidity is less so that does make it feel a little less like Summer but here in Florida, we have three seasons: warm, hot and hotter! 

We are still here...still plugging along.  Almost done with the first marking period of school.  The girls are doing ok for the most part.  Sami is struggling the most; 5th grade is very hard and she isn't the best with time management:(  Summer is enjoying 1st grade but has to do things "her way" which isn't always the best way to do things but we are working on it.  Grace is enjoying preschool very much and has a new friend already:)

I will probably jinx us by mentioning Joey but i'll risk it.  He has some good days and some bad days.  They are about the same in frequency.  He can now go up and down steps w/o help; roll over from back to tummy and stand up in his bed on his own; is eating us out of house and home some days.  LOVES to say the word no; likes to hit; throw things at people -->all learned from his sisters:(

Still not a fan of sleeping and some days will only take a 30 minute nap all day (those days are NOT fun)

I had to go back to working 5 days a week; for various reasons- busy holiday season coming up; very stressful trying to get to work on time when I have to leave as soon as Joe gets home; and missing out on things for the girls at school because I have to work and its difficult to take time off when I am the only one who does what I do!  I have been on my new schedule for a week so we'll see how it goes.  Once the holidays are over things may go back to the old way.  I wish I could find someone to watch the kids one afternoon a week until Joe got home (and wouldn't cost an arm and a leg) so I could work three 8hr days a week vs spreading 24 hrs out over 5 days like now.  Maybe someday...

EB awareness week starts on Thursday!!  I have BIG blog plans this week....we'll see if they actually happen...lol

Oh and Halloween is coming up soon- i am trying to sew Sami her costume (I am NOT a sewing type person so this should be interesting!)

Sorry no pictures and there won't be for awhile.  The CPU (central processing unit) on my desktop was damaged and we can't afford a new one right now:/  and there is no way to pull pics of the SD card onto my little bitty lap top.  So while I can still take pictures I can''t upload them.  

Good night y'all:) 



Monday, October 8, 2012

Joey's vocabulary

Words Joey can say:

up
outside
Ziggy (the cat)
Popcorn
spongebob
am-me (sami)
ummer (summer)
grace
mama
dada
Popscile
sucker
backpack
Dora
Map
kitty
puppy
truck
pencil
uh-oh
no
bye-bye
night-night
baba (blanket)
ma (milk)
cracker
cheese
bubble
book
sit
bay-bay (Bailey the cat)
baby
belly
ya
mel-mo (Elmo)
purple

his vocabulary is bigger than any of the other three at this age!  I guess that is what happens when you have three older sisters who NEVER stop talking!  
 

 

Sunday, September 23, 2012

Rough Week

Last week was a very, very rough week...

For those that read my blog you may remember I mentioned Joey was sick again.  The next morning when I was changing his bandages I noticed his tummy was so swollen his g-tube was popping out; he was also working really hard to breath.  So it was off to the ER we go.  10 hours, 2 x-rays, some blood work and many consults with his other doctors, no one could figure out what was wrong with him but all thought he needed to be admitted for IV antibiotics:/  His white cell count was high but no one could tell if it was a bacterial or viral infection with 100% certainty.  We were not about to let him get IV antibiotics unless he truly needed it.  We finally had to get the head of the Ped's ICU (and Sami's former pediatrician) to come down to the ER.  He checked over Joey, looked at the x-rays and blood work and agreed with us, no admission but he did want more blood work done the following day to  see where his counts where then.  So we went home and back the next morning for more blood work.  His white count was slightly higher:(  ER doc DEMANDED that he be admitted.  Head of peds was paged again.  He came down, checked over Joey, looked at the blood work and said he couldn't justify admitted a toddler with EB, who was happy, eating, drinking, peeing, breathing better and had a noticeably less swollen tummy for IV antibiotics when he wasn't even certain Joey had an infection.    So home we got to go.  But then Joey started spiking fevers about 1-3 hours after his dose of antibiotics:(  It never got higher than 101 and only lasted a couple of hours if that and he was still happy, eating, drinking, peeing, etc....so we just watched and waited.  I did some research and asked a friend who is a nurse and the pharmacist at work and one of the very, very rare side effect/allergic reactions to the antibiotic he was on is a fever, occurs in less than 1% of the people who take it!  

So yesterday was his last day of the meds and today, guess what NO FEVER!   So I guess we can add this med to the list of meds he is possibly allergic too.  But at least he is feeling better.

Here are some pictures from the past couple of weeks







Oh and did I mention the radiator on Joe's truck blew up on Thursday?????  More bill...more money to spend we don't have.  between the ER bills, towing and repair bill for the truck last week was a very expensive week:( 

Tuesday, September 18, 2012

Sick again :-(

Joey is sick again:(  Doctor thinks ear infection but he also is really bloated and grunts when he breathes when he is sitting.  The doctors has no idea why.  He breathes fine when he is standing or laying down; his o2 levels are normally most of the time but his heart rate is higher than it should be and he is breathing faster than he should be too.  Could just be EB stuff but he doesn't have the same symptoms as before.  His temp is right around 100 but the doctor doesn't consider that a fever.  Been going on and off from the past 5 weeks. VERY frustrating!!!  If we don't see any improvement over the next 5 days then most likely we will have to take him to the ER.  I doubt we will get anywhere there either but I am tried of being blown off by ALL his doctors.  He is not sleeping well either which means we aren't either.  

Sorry no knew pictures tonight; still need to download off the camera.  But you want you can heard over here and read a blog post I did for the family, friends and followers of baby Easton.

Sunday, September 9, 2012

18 months old!

Joey turned 18 months old on Saturday!  

Here he is when he was just a few days old; he was 6 pounds 8 oz and 19 inches at birth!




Here he is a year ago when he was 6 months old; he was 16 pounds and 26 inches!



And here he is today; about 24 pounds and 31.5 inches tall!




Favorite Foods: gold fish crackers; graham crackers; cheese; Starburst; peaches

Favorite Cartoon Characters: Spongebob and Scooby Doo

Favorite Activities/Things: going outside, climbing onto and into things; bubbles, balls, dolls (hey he has 3 sisters!) giving and receiving kisses- but his kisses are licks:)  the girls don't like those kind but the cats don't seem to mind;-)

New Words: bubble, shake, graham cracker, muh (milk) side (outside); up; out; all done;  

He likes to try and "play basketball".  He LOVES things that he can open and close- there is no such things as a childproof cap in this house; he can get ANYTHING open if he wants too!  He loves to play with his sisters and is a BIG helper around the house.  He likes to open their fridge and take out sippy cups of milk and hand delivery them to Summer and Grace.  He knows who's cup is who's and has never gotten it wrong! 

EB: while is EB is better than it was 18 months ago and even just 3 months ago he still has some REALLY bad skin days.  He still gets large open wounds and many, many blisters some days.  Bath and bandages still take about an hour.  His hands and feet are his best areas (amazing I know) and about 75% of his wounds are self inflicted (from itching:-/)  He is sick right like (likely RSV- the drs office can't test for it so we just treat him like he has it) and his skin tends to get worse when he is sick.  He is no where near where Sami was at this age but he isn't Sami and is MUCH more active than she was at this age (she wasn't even walking at 18 months)  So I am very curious to see how his EB progresses as he gets older.

G-tube: still leaks; some days a lot:(  We went to see the surgeon and we have three options: 1) do nothing and deal with the leaking; 2) admit him to the hospital for IV fluids for 4 days and take the tube out and allow it to close a little on its own and then put a small tube in; 3) remove it permanently.   We are going with option 1 but would consider option #2 if we get to the point where he is losing weight because more calories are leaking out than are going in.  #3 is not an option right now.  He is BARELY on the growth chart as is it.  But #2 isn't ideal either because of the IV, being in the hospital with all those germs and mostly because he'd NEVER sit still for 4 days with an IV in his arm.  He would have to be heavily sedated for that to occur!  So we just deal with the leakage and change his belly bandages 2-3 times a day if need be.   The doctor said it will either leak out of his belly or he'll throw up from eating/drinking too much or from the pressure of just him walking and bending and climbing.  Or in other words just be a normal 18 month old.  We'd rather have his belly leaking than him throwing up multiple times a day.  

Sleeping:  that is hit and miss too.  He is NOT (nor am I) adjusting to this new schedule since school started.  Some days he is up at 6:30am other days I am having to wake him at 8 when its time to take Grace to school.  Some days he takes 2 naps; some days 1 nap some days zero naps. Night time sleeping is hit and miss too.   




 Mr. Monkey



yes, he really tries to shoot the ball into the hoop:)

a cute one of Summer and Grace from tonight:



 

Sunday, September 2, 2012

Overdue update...

I have been blogging, just not over here but I wanted to give everyone a quick update.  

  • school started two weeks ago, Sami is in 5th, Summer in 1st, and Gracie is in pre-k.  So far its been going well.  Sami and Gracie LOVE school and their teachers.  Summer is just ok at the moment.  They do a lot of work in 1st grade and don't get much "fun" time.  She's much rather have fun time. 
 
  • both girls are back in girls scouts this year with meetings on the same night of the week again:/
 
  • Sami and Summer can both ride a two-wheel bike now:)
 
  • Sami celebrated her 10th birthday last week ( a blog post just on that coming soon)

  • Joey is doing better than he had been last month.  He had some really bad areas of skin and multiple infections in which he needed oral antibiotics for (first time in his life). Bath time was unbearable and even a simple diaper change required pain medicine:(   He enjoys running around and playing with this sisters and getting into things he shouldn't be.  He is almost 18 months old and I'll do a blog post just about him soon:)  

  • My car has been having issues and thankful most of it was covered under the warranty but the rest isn't but it's going to take awhile before we can afford to get the rest of the work done.  But its drivable and that is all that matters right now.  

  • I been busy at work too (Christmas is less than 4 months away!!!)

  • There have been lots of new EB babies lately which has been the reason for my many posts over on In Garrett's Memory

  • You can "meet" one of the new babies, Easton, here.  He is more severe than Joey and his pictures are quite graphic.  He is 10 days old and is one of two (at least) EB babies born on the SAME day!  How crazy is that???

Well here are some recent pictures.  Sorry none of Gracie....she is camera share these days.





 future basket ball player

 sponge bob boy

 our little monkey...


Tuesday, August 28, 2012

EB related post

For those that don't follow my EB Blog, I did a post over there tonight.

Monday, August 13, 2012

35 random facts

a little birthday related post:)  35 random facts/tid bits about me!

1- the number of rings I wear each day.
2- the number of musical instruments I played in high school (flute and tuba)
3- the # of baby teeth that still reside in my mouth
4.1 yrs is the total length of time I have been pregnant in my life!
5-  the number of concerts I have been too.
6- # of kids I have ( 4 on earth, 2 in Heaven)
7- the number of hours I spend each week pre-cutting Joey's bandages
8- the # of round trip plane rides I have taken during my life
9- how long Joe and I were engaged before we got married and we got married on the 9th day of December!
10- how old my oldest child will be this yr.
11-the number of miles I walk each Sunday when I am at work
12- the number of yrs I have been married come this December
13- the number of states I have visited
14- how many traffic light I go through between home and work
15- the number of hrs it took to fly to Italy 15 yrs ago
16- the # of year since I graduated from High School
17- the number of miles round trip I drive to work each day
18- the number of yrs I have worked for my current employer (as of October)
19- how old I was my freshman year of collage
20- celebrated this birthday in San Diego
21- was the best birthday EVER:) (not so much for the # it was but for people who celebrated with me)
22- how old I was when I got engaged
23- how old I was when I got married
24- the number of hours I work each week at my part time job
25- the age I had my first child
26- the number of years Elizabeth and I have been friends
27- was how old when I went through my first hurricane (on my birthday no less)
28- about how many emails I get each day
29- the number of yrs I have known my friend Shauna
30- is the # of minutes it takes me to fall sleep each night (on average)
31- about how many loads of laundry I do in a month
32- I spent this birthday in the hospital
33- the number of times each day I say the phrase "inside voice please"
34- the number of times each day I saw, "stop bothering your sister!"
35- the number of candles on my cake this yr!

:-)

Wednesday, August 8, 2012

Those with EB in need

We are fortunate that our health insurance covers most of Sami and Joey's medical needs.  It doesn't cover everything but it covers the important things!  Unfortunately others with EB aren't so lucky



Meet Cassie



She is a 15 yr old young women who has severe recessive dystrophic EB.  She and her family lives in Louisiana.   Her parent Logan is a single parent to Cassie and her brother Walt whom they adopted when he was a toddler.  Walt has EB too.  Logan is unable to work because caring for his children is a full time job.  They are currently facing unexpected (and costly) repairs to their only van.  He is unable to take Walt to school or Cassie to the doctors without a working van that accommodates Cassie's wheelchair.  Please take a moment to read their story and if you are able, help them financially or just by sharing their story.  You can read more about this awesome family here.




Meet Omayra:




She is a twenty something year old women with recessive dystrophic EB.  She lives here in Florida (not too far for us in fact) but the day she turned 21, Florida Medicaid cut her off from the doctors she needs to see and the bandages she need to protect and help heal her wounds for no other reason than because she was over the age of 21.  You can hear her story here and learn how you can help.

Tuesday, August 7, 2012

Product Review: UV Skinzs

A couple of months ago, the EB organization, DebRA, had a weekly giveaway on their Facebook page and my entry won!  I won a swim suit from the Company UV Skinzs!  

Here is a little bit about the company per their web site: " UV Skinz offers fun and fashionable protective sunwear for infants, kids and adults. UV Skinz’ UPF 50+ sun protection clothing blocks out 98% of the sun’s harmful UVA and UVB rays, giving outdoor enthusiasts the peace of mind to live and play protected from the sun. Wearing UV Skinz is a slip-on-and-go, earth-friendly alternative to large amounts of topical sunscreens that are absorbed into the skin. UV Skinz provides all day carefree sun protection with no reapplication necessary. Wearing UV protective clothing is an important step in preventing sunburns, premature aging of the skin and skin cancer."

Another EB Family also recommended them so I was excited to have won one!  Since Joey doesn't swim, I opted to get Sami one instead.  She picked out this one (pink of course!)  



It arrived a couple of weeks later and she has used it a few times since.  She really likes it!!!  Its easy to put on and comfortable to wear.  She also even wears the hat (much to my surprise!!)  She is a BIG fan of two-piece suits and likes how the shirt covers up the long scar on her back so people don't ask her about it!  Overall I am very, very happy with this suit and would HIGHLY recommend it not just for other kids with EB but for anyone looking for a high quality suit with UV protection! 

Monday, August 6, 2012

It's that time of year!

Back to school shopping that is!  After only getting SOME school clothes and supplies this past (tax free) weekend, my first thought it 'now I know why large families home school their kids'!  So they don't have to spend a small fortune on school supplies!  But then I realized they actually probably spend more since they have to buy all the books/material as well.  But going back to school is expensive when you times it by 3!!!!  But over all we didn't do too bad for all the things we actually got.

School starts in 2 weeks and unfortunately the girls aren't NEARLY as excited as I am about that day:)  But things will just get crazier; more taking and pick up from school, some days at 3 different times as well.  Trying to mentally plan in my head when I can get Joey's bandages changed and when he can get a nap w/o me having to wake him to go pick up someone!  Its going to be challenging to say the least.  But I am sure we'll figure it out!  Maybe I can actually get the house more organized while they are at school too:)

Some quick updates on the kids:

Sami- busy planning her birthday party!!!  she is NOT happy school is starting up soon; she won't be able to sleep until 11am every day!

Summer- been getting LOTS of visits from the tooth fairy!!  She is excited for school to start but just so she can see her friends and start going to girl scouts again.  

Grace-is VERY excited to be starting school this yr, but is still VERY emotionally immature and I worry about how she is going to handle school w/o out having her dozen or so emotional breakdowns each day:/

Joey- is WALKING all over the place now! He can get from a sitting position to a standing position better and better each day.  He loves to follow his sisters around the house and get into as much as possible:)  He loves to eat yogurt and gold fish crackers and peaches.  He also loves to be outside.   His skin is a mess right now; we recently started a new reflux medicine and is possibly having an allergic reaction to it:(  hopefully when the rash clears up he'll start feeling better.  

Here is one picture for you all.  I will be doing another post about where it was taken sometimes this week (hopefully)  I have 4-5 more posts I hope to have written and posted within the next week.  Two are reviews (one product review and one book review) so check back for those!! 


Sunday, August 5, 2012

250th Post!!

This is a must read post!  Not only is this my 250th blog post!!!! (YIPPIE!!)

It is also the one where I announce a fundraiser I am hosting this month!

Okay, here are the details: In honor of my upcoming birthday I will be donating AT LEAST 10% of my profits from sales thru my ON-LINE Avon store for the ENTIRE month of August to The Butterfly Fund!! They are a great organization out in California that is dedicated to helping those with EB.  I had the honor of meeting Laurie and Steve Sterner recently and I wanted to do a little something to help them out and make their goal of helping those with EB a little easier!

Please use the code BUTTERFLY_35 at check out so your sales will go toward the event! http://sdenslaw.avonrepresentative.com/online_event/view.php?rep_spnsr_evnt_id=342838

My goal it to be able to donate  at least $100 to The Butterfly Fund:) Even if you have a regular Avon rep please consider shopping my store this month and help support The Butterfly Fund!


Don't forget to use the code BUTTERFLY_35 at check out so your purchase goes toward this fundraiser!!!  

Thursday, August 2, 2012

Tuesday, July 17, 2012

Still plugging along....

we are still here..trying to survive the heat and rain that have hit us!  

Sami is back to her old self.  Joey is starting to walk on his own and Summer and Grace are well...just being Summer and Grace!  

Other than that, not much to report on now, so feel free to check out my on-line Avon store!  Sales have started to tapper off so trying to drummer up some business so I can stay open!  ( I have to make a certain amount of sales per month in order to stay an Avon rep)  I am planning a fundraiser in August for an EB organization near and dear to our family! So stay tuned for that:)

You can visit my store here and check out the ANEW products!   Those are very popular among my loyal customers!

Hope everyone is staying cool during this hot, hot summer!

 

Tuesday, July 10, 2012

16 months old!! (and other news)

its 1:21pm on Tuesday...lets see how long it takes me to type of this update!  lol

Joey is 16 months old now!  He probably weight about the same (22 pounds 31 inches)

Favorite Foods:
Dino Shaped Chicken Nuggets
Bananas
Yogurt
Whip Cream
Peaches
Graham crackers

He loves to crawl EVERYWHERE and walking around furniture.  He just started pushing around a shopping cart of the girls'.  But won't walk independently.  Which is fine with me.  Less for him to get into!  But he is also a climber!  If he is on the couch he'll climb on to the arm of the couch and try to climb up the wall:(  




Still having issue with his g-tube leaking.  Nothing we have tried is working other than not feeding him as much thru his tube.  When he crawls it just put so much pressure on his belly, it causes the g-tube site to leak around the edges.  Hopefully once he stops crawling 50 mph 12 hrs a day it will stop leaking so much!  He is done to one nap most days= anywhere from 30 minutes to 3 hrs.  Don't ask about night time sleeping, I know i'll jinx us:)

His skin is about the same; as long as we wrap he is pretty blister free.  


Here he is all wrapped up after a bath.



Sami is recovering well, already back to her old self already planning her birthday party! (Her birthday isn't for another 7 weeks!)  My birthday however is in 34 days....I haven't had a party or gone out for to celebrate in years!  So trying to come up with something to do this yr.  All my local friends are scattered throughout the city (and state) so not sure what will work for everyone. 

Work is same old, same old; getting ready for the back to school season!!!  Avon is going ok.  Been pretty slow this last campaign...hopefully things pick up soon:)  You can always check out my on-line store here!

I think that is about all the news for us!  Hope everyone is doing well!  Thanks for reading:)


p.s its 10:56pm on Tuesday...only took 9 1/2 hrs to write this one!




Monday, July 2, 2012

Update on Sami

Sorry for not doing an update sooner this past weekend was rough with working and dealing with Joey's g-tube issues.   Anyways Sami had her post op appointment today.  Her back is healing nicely.  She is back to her normal self but does have pain from time to time.  She still has to take it easy, no rough activities, no PE class once school starts up again  (she is really upset about that; she just wants to be like everyone else).  Here is a picture of her x-rays.  The x-ray on the right is before surgery and the one on the left is after.   
We go back over Thanksgiving break to check her growth and hopefully schedule the surgery to lengthen her rods over Christmas Break so she doesn't have to miss any school.   Sami want to get her fusion and permanent rods next summer but the doctor would like to wait another 3 yrs.  We'll see how the next surgery goes and go from there.  But I honestly don't think having surgery every 6 months for another three yrs is going to work for any of us, especially Sami.  And that is if her rods don't break or crack which the doctor expects them to do at some point because that is just the way it goes for someone with growing rods. 


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.  

Stats:

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!