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Friday, December 23, 2011

Merry Christmas!!

Monday, December 12, 2011

Garrett's Birthday

you can find my blog post here on how we celebrated 
Garrett's Birthday

9 months old

Joey is 9 months now!!!


Weight: 18 pounds
Length: 27 1/2 inches
Clothing Size: 12 months
Favorite Foods: anything he can feed himself
Favorite Activities: chewing on anything that will fit into his mouth

His skin is a mess right now...worst its been in about 6 months.  He is battling multiple infections daily and Tylenol no long does anything for his pain.  All we have left is Motrin.  Thankfully that helps a lot; as he is a different baby when he has had his Motrin:) 

 upside down baby!

Monday, November 21, 2011

Joey- 8 months old and update on Sami's back

I am a little behind on the updates but Joey turned 8 months old a couple of weeks ago.  Unfortunately he has been really sick this month so I haven't had time to take his 8 months old pictures or post an update.   It started off with a double ear infections and an infection in both eyes and then it turned into RSV or some type of upper respiratory infection.  His skin was looking really good before he got sick, then looked even better while on the antibiotics and steroids but now he is a mess.  Not sure if its because of the weather- one day its cooler in the lower 70's and the next its in the mid 80's with lots of humidity.  But his entire torso, neck and chin are blistered, open raw skin mess. 

Here is one picture I managed to get of him the other day


Weight: about 16-17 pounds

Length: not sure about that right now, haven't measured him recently.  

Wears: size 12 month clothing

Drinks: all his bottles by mouth, we just use his g-tube to feed him baby food.  He will eat yogurt off a spoon but he will only eat if he feeds himself and that takes forever to eat a decent amount so we just push it through his tube while he feeds himself! 

He can hold is bottle all by himself and sit up on his own too.  Still no rolling over or crawling but that is ok, less damage to his skin.

Sleeping:  some nights he will sleep all night.  But he mostly goes to bed around 11pm and sleeping till 8am getting up just once or twice to eat.  And he takes 2-3 naps a day and they last anywhere from 30 minutes to 3 hours.  

And now onto Sami....

She had her 4 month post-op check up with the doctor today.  When she had her surgery they placed special growing rods in her back that would grow with her so she wouldn't need surgery every 6 months to lengthen them.  Well so they only one rod has moved since they were placed causing her curve to get slightly worse; which isn't good:(  We go back in 2 months and if there is no change she will have to have surgery to lengthen them manually and then again every 6 months there after.  She isn't happy about it one bit.  Hopefully things will look better on the x-ray in  January.  We also found out that even though the insurance company approved the surgery in the first place, once they got the bill, they started looking at every single thing charge and decided some things weren't covered and they aren't paying for somethings.  We are appealing but are very worried as the amount owed is more than we could ever pay off in our lifetime:(

Hope everyone has a happy Thanksgiving!

Monday, November 14, 2011

Grace's Birthday

Grace turned 4 years old last Sunday!!!

We had a small party with family and friends to celebrate.  

Here are some pictures from the party:


Height 42 1/2" (same Sami was at age 5 and Summer at age 3)
Weight: 37 pounds

Favorite Color: Purple (can you tell??)
Favorite Foods: yogurt, cheese, ice cream
Favorite Activities: coloring, playing on the computer, playing school with her sisters.


Sunday, November 13, 2011

Sickness, birthdays, and not so good news

I haven't had much time to blog these past 2 weeks.  Last Saturday Joey came down with a fever of 104.7!!!!!!!!!!!!  Off to urgent care we went where he was diagnosed with a double ear and double eye infection:(  First time on oral antibiotics in his life and not for EB reasons so I thought that was pretty good!  Then Monday he started to cough....then Tuesday he started to have problems breathing:(  Off to the doctor we went again.  The doctor thought Joey had RVS, thought they don't test for it in the office.  Grace had it when she was 3 weeks old and she was REALLY sick.  And with Joey's history of breathing issues this was big.  Normally they would put babies with RSV in the hospital.  But hospital and EB don't mix so he agreed no Hospital for now.  We started on breathing treatments and Steroids.  He seems to get worse breathing wise after he got his dose of antibiotics for his ear/eye infections plus he was getting TONS of new blisters and wounds which isn't normal for a child with EB while on antibiotics.  So BACK to the doctor on Wednesday and saw a different doctor in the office this time and she didn't think he has RSV (he isn't sick enough) but and gave him a new antibiotic to try. Sure enough no more massive breathing problems after taking this new one.  So we had can Augmentin to the list of things he *might* be allergic too.  Today he is better but still has a ways to go.  Still needs breathing treatments every 4 hrs or he gets coughing so bad he can't breath.  But he is eating and sleeping like he was before he got sick so that is good.  But now I am sick and on antibiotics too.

Grace turned 4 last Sunday and Joey turned 8 months this past Tuesday and I hope to do a post on those events soon too.

And for the not so good news...I found out a couple of weeks ago that the Target I work for (and have for the past 10+ yrs) is closing permanently on January 28:(   You know the economy is bad when they start closing Targets.  I hope to transfer to another Target but I won't know for sure till about 2 weeks before we close.  Relocating 130+ employees is a tough job and its going to take some time. 

Tuesday, November 1, 2011

Halloween 2011

Here are some pictures from Halloween

Sami as a Vampire.........

Summer as a good witch (with orange vampire fangs)

Grace as Ariel- the little Mermaid

Joey the cowboy!!

Here are the pumpkins they (daddy) carved:

(Joey's, Summer's, Sami's, Gracie's)


Monday, October 31, 2011

EB Awareness Week- Day 7

My life with EB-

The one question I get asked A LOT is how do I do it???  Honestly I have no idea!  lol  I just do it.  Caring for 4 kids, cooking, cleaning, working part time, grocery shopping, ordering supplies, doctor appointments, changing bandages, laundry (OMG the never ending pile of laundry) it all has to get done so I just do it!

My typical week day:

get up when Grace and/or Joey wakes me up (btw 7 and 9); draw up Joey's meds, get Grace something to eat and drink, mix up Joey's breakfast.  Give Joey his meds and tube feed.  They watch Mickey Mouse while I take my meds, get something to eat or drink and quickly skim through my email and Facebook updates.  

Next I do the dishes, then give Joey his pain meds while I get things ready for his bath and bandage change which takes about 20 minutes.

Then I give him his bath and spend the next 45- 60 minutes, removing the old bandages, popping blisters, removing scabs, applying new bandages, and wrapping him all back up.  Sometimes he lays there and is a happy camper; other times he screams at the top of his lungs the entire time.  Once we are done, he is usually ready for a nap.  While he sleeps I clean up the mess we just made, start a load of laundry, make Grace lunch and if I am lucky and he sleeps longer than 30 minutes I might get a shower and some lunch myself.    If Joey isn't up by 2 I have to wake him in order to get Sami and Summer from school on time.  I won't even tell you about Monday's, you can read about it here.

But T, W and Th, we come home, they have a snack, I feed Joey his lunch, break up MANY fights btw the girls, help them with their homework, start dinner and then on W and Th I go to work after dinner.  Once I get home from work I try to catch up on email, my blog and figure out what needs to be done the next day!

As for the weekends, I got to work before anyone else gets up so Joe does most of the things on the weekends that need to get done. 

and as for MY EB, I don't get many wounds- not ones visible to people I see every day- most are internal or places always covered by clothing, but when I do have wounds, I tend to them when I need to.

That concludes my EB Awareness Week posts! 

Coming soon:

Halloween 2011!
Grace's Birthday (how can she be 4 ALREADY???)

but for now, Will you BE THE ONE???

Sunday, October 30, 2011

EB Awareness Week- Day 6

 I didn't get time yesterday to blog and I really wasn't sure what to write about today and I got some bad news this afternoon, EB has claimed another life:(

Baby CJ, age 4 months, Junctional EB


I really don't have anything to say now.........maybe tomorrow.....

Thursday, October 27, 2011

EB Awareness Week- Day 4

Links, Links and more Links!

I encourage you to check out any of these links to learn more about EB or to read the stories of others with EB!

Or any of the other links on the left side of this page!

EB Awareness Week- Day 3

Wordless Wednesday....even those with EB can achieve great things:)

Tuesday, October 25, 2011

EB Awareness Week- Day 2

Its late and I am doing 7 other things at once, so here are some quick facts about EB you may or may not know:

*In the US, 1 out of 50, 000 babies are born with EB.  Worldwide that number drops to 1 out of 17,000.

*Approximately 1/3 of those babies will not live to see their first birthday.  

*Depending on which study you read, 1 out of every 227-352 people are carries of an EB gene (I am pretty sure this includes people who have EB)

*Simplex is the most common form of EB

And that concludes your fun (or not so fun) facts about EB!

Here is a pictures of Joey feeding (yes at 7 months) himself mashed potatoes:) 

Monday, October 24, 2011

EB Awareness Week- Day 1

Tomorrow is the official start of EB Awarenss Week!  My goal is to post something every day about EB.

Today I will show you first hand the kind of damage EB causes the skin to entail.  I don't normally post pictures of wounds publicly for all to see, but i will make an exception for this week.  Due to a very busy schedule on Monday's we skipped a full bath and dressing change for Joey on Sunday so that I could get him done first thing this morning.  So he went about 36 hrs instead of the normal 24-26 hrs inbetween dressing changes and this is what I found this morning underneath the bandages:

The blister wrapped all the way around his entire wrist.  He had matching ones on the back of both legs and his left upper leg.

this is his lower back:(  the dark red areas are completely raw.  

 Bottom of his foot.  His big toe is a complete blister.

Due to my work schedule and the girls school schedule its hard to change him at the same time every day.  So we need to figure something out that works for everyone....

That is all i have time for today.  Come back tomorrow for more EB related info!  I am also working on something I hope to have done by Friday!!!

Sunday, October 23, 2011

EB Awareness Week

stay tuned for some posts during
EB Awareness Week!

Sunday, October 9, 2011

Busy, Busy, Busy!!

Life here is very busy these days!  Besides school, both Sami and Summer are in girl scouts this year and Sami joined the 4th and 5th grade Chorus and of course EVERYTHING meets on MONDAYS!  So Monday's Summer is a car rider, we then go to the park near school for about 30 minutes and then back to school to get Sami.  3 Monday's a month Sami has a girl scout meeting; Summer just two Monday's a month but of course its the same Mondays for both girls.  But they both don't have meetings the 2nd Monday of the month so tomorrow will be a little less crazy:)

They are doing ok in school.  Sami had LOTS (1.5-2 hr) of homework per day during the week and she is struggling with spelling this year:(  Some of her words I can't even spell as an adult let alone when I was in the 4th grade!  Summer has been struggling with writing.  She CAN write she just doesn't think she can which results in a TOTAL emotional tearful breakdown EVERYDAY during writing time.  A few days she got so upset she was yelling at her teacher:(  Her teacher was out most of last week so hopefully things will go better for Summer this month.  

Home school with Grace didn't go well.  She would SPEED through her worksheets and then was 'done' even if I wasn't.  Plus Joey's schedule is so unpredictable we couldn't have school the same time each day which made her upset.  It is fine though she already knows her numbers, letters, colors and shapes....I teach her too much more and she'll be board in pre-k next year!  She still will do 'homework' sometimes with Summer after school.

Joey is 7 months now (you can find that post here)  Unfortunately he has developed Torticollis:(  which means his head tilts to one side and he is unable to straighten it.  That is what Sami had that lead to her spinal problems:( Usually its due to a muscle issues so we are starting on the PT exercises we learned with Sami and I got him a chair that he can sit in on his own without falling over and that will help with the neck muscles. If we don't see improvement in a few weeks then its off to the orthopedic doctor for x-rays and evaluation.  His is occurring later in life than Sami's did so hopefully we caught it in time (and can correct it) before damage to his spine has had time to occur.  I am also trying to figure out a way to get in on his stomach w/o causing pain and him throwing up.  Any pressure to his belly/g-tube area causes him to throw up.  So tummy time is tricky.  

Oh and the biggest news, Summer lost her first tooth last Thursday at school!!! She was more excited that it happened at school than in the fact she lost her first tooth!

Friday, October 7, 2011

Dressing Changes- part two

For those who missed part one, you can find it here

Part two: I wanted to focus on somethings we have changed recent in regards to Joey's bath and bandages that others may find helpful, so i wanted to share.

Bath time has almost always been a crying/screaming time for Joey.  In the beginning we alternated bleach/vinegar/plain water baths.  Mostly to keep the infections at bay.  Once we noticed little to no infected areas we cut back on the bleach and vinegar baths.  But even with plain water he still screamed.  So we started using something that I use to use as a kid when I took baths, baking soda.  I use 1/4 cup in his baby bath tub (it holds about 1 gallon of water) and guess what?  he no longer screams the entire time!!  Most days he just sits there fairly calm.  If he kicks too much and hit his foot he will start crying but for the most part he is clam.  We have been doing the baking soda baths for almost 2 months now and it seems to be working.  It seems to help loosen the dead skin and make his skin softer too.

Joey has/had A LOT of dry/dead skin/scabs all over his body.  And they are VERY hard to remove from a wiggly baby.  We can't let him soak in the tub for more than 5 minutes because with the our form of EB, the longer the skin is wet the more is breaks down.  When it gets too moist the skin just SLIDES off his body (seriously).  We run into this problem if we apply too much ointment to his bandages too.  So getting the dead skin off is a challenge.  Then I remembered something another EB family told me they did with their daughter (for a different reason) but I thought it might work for our situation.   I cut a piece of tubifast for each arm and SOAK it in Aquaphor until its all nice and greasy.  Then I put one on each arm, lightly wrap with gauze and then another piece of tubifast on top to hold it in place.  I left it on for 24 hours and when I removed it the next day about 50% of the dead skin/scabs came off with easy as I removed the tubifast!!!  IT WAS AMAZING!!!!  I tried it again for another couple of days and was able to get about 95% of the dead/skin scabs off  his arms. 

I have since tired it on both legs and was able to remove about 50% of the dead skin/scabs from there too but his legs are still really fragile that its not something I can do all the time.  He needs all the padding from the bandages to protect his legs.    But overall I consider that experiment a success:) 

Tuesday, September 20, 2011

6 month photo shoot

I had a hard time choosing which ones to post!  
There was so many great ones:)

Friday, September 9, 2011

6 months old!!

 Guess who is 6 months old already?!?

We can hardly believe he is 6 months old already!  It has gone by soooo fast (too fast really).

He has gone from 6 1/2 pounds at birth to about 16 pounds now!  (thanks to his g-tube).  He is also 26" long (he is going to be tall like Daddy:)

He is still mostly g-tube feed but that is ok because we can stuff him full healthy fruits and veggies and he can't spit it out at us:)  He can sit up leaning against the back of the couch or against us on the floor.  He can hold his head up about 90% of the time.   He will sleep about 3-5 hours a stretch at night:) but only takes 3-4 30 minute naps during the day:(  He is NOT a sleeper. 

He will grab at toys, hold them in his hand and put them in his mouth.  He LOVES his monkey toys and loves to chew on them.  He loves to laugh and smile at his sisters (I think Sami is his favorite...but don't tell the other two;)  He seems to have a preference for the color purple because when you put two of his toy rings in front of him he always grabs the purple one.  Grace thinks that is great since that is her favorite color too!  He grabs with his left hand first but I have no idea if that means he will be left handed someday.

He does ok in the car as long as it keeps moving.  Stop lights stop signs and crossing guards are NOT his favorite things. 

Skin wise is he doing ok and we'll just leave it at that for now.

I do not have anymore pictures however:(  My camera isn't working, I think (hope) its the battery and once the new one I ordered arrives, it will be working again.  So hopefully I can take his 6 month old photos sometime next week for you all to see.

Sunday, September 4, 2011

Dressing Changes- part one

I have been wanting to do a post (with pictures) on how we do dressing changes to give other EB families ideas for their own set up.

  here is the area as a whole

gauze opened and tubifast  pre-cut to size (keeps the gauze in place)

 lancets to pop the blisters:(

 ointment we use on his wounds

 all his bandages pre-cut.  we spend 1 day a week pre-cutting 7-10 days worth of bandages;  it saves SO much time each day.  He is still wrapped from the chest down so the pieces don't change much, other than when he grows and we need larger pieces.  I take all the backs off the bandages right before we start the bath so everything is ready to go.  It makes things much quicker especially when I am by myself! 

 where he gets his bath

 what we use to wash him with

 the typical amount of towels, blankets, clothes, tubifast that needs to be washed when we are done with a bath/dressing change

 this is his typical amount of supplies he receives each month.  the top box is his g-tube supplies; the HUGE box is his wound care supplies (the cat likes to smell the boxes)

these two are pictures of where we keep SOME of his supplies.  It is the items we use daily, the rest are scattered through the house behind furniture and under things:)