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Sunday, July 31, 2011


Yea I know I haven't updated in a while.  I have either been too busy or too tired.  

Sami is doing well.  Tomorrow it will be 2 weeks post-op.  She is off pain meds already and is back to her normal self:)  She still gets tired from time to time though.  We are working on getting ready for school to start in THREE WEEKS:)  (can you tell I am excited??)  She will have some restrictions: no PE for the entire school year; her classroom is on the 2nd floor (up to flights of steep stairs) so the doctor wants her to use the elevator for a few months just to be safe.  One fall or a hard bump could dislodge or break one of her rods.  And she can't carry a backpack on her back, school doesn't normally allow rolling backpacks so we have a meeting the week before school to discuss these things.

Joey is doing about the same.  He was doing good on eating by mouth up until the past few days and has started gagging a lot, even when he isn't eating.  So its back to being feed via his g-tube.  His skin is doing ok.  A LOT of scabs/dead skin, WAY MORE than we remember Sami ever having.  We could easily spend a hour PER DAY removing it all.   He was getting a lot of blister and I thought it was the bandages but we recently discovered that the ointment (no matter what we use) it causing all the blisters:(  So we just use dry bandages when we can and soak them off really well before removing them. 

Summer is excited for school to start.  We got her backpack today:)

Grace WISHES she was going to school too but I think she'll enjoy the peace and quiet (I know I will) and not having to share with Summer all the time!

Still no answers on Joe's swollen leg (now legs)  he has another vascular ultra sound and they couldn't find anything.  He is suppose to see the Dr. this week to discuss the results. 

I stopped all my meds at the beginning of July to basically see what would happen regarding my supposed Lupus.  My blood work was mostly normal (the ANA was positive again but the lab didn't run the ENTIRE test like they should have) and I was feeling REALLY good till about a week ago and it all went down hill.  So much pain....:(  So I am back on one of the meds and may have to go back on the steroids if things don't improve soon.  I don't want too but its hard to take care of the kids, especially Joey, so I guess I'll do what I have to for them. 

That is about it for now.

Here are some pictures from the past few weeks.

 he can hold his head up most of the time

 being silly with Joey (who looks less than thrilled as you can tell)

 future baseball player??

 Sami's back BEFORE surgery

and here is her back AFTER surgery!
(amazing, i know)

Thursday, July 21, 2011

Busting out of here and Prayer's for Tripp

We are heading home!!!  YIPPIE!  Sami is doing well enough to go home which is good.  We are just waiting on the discharge papers (its been 2 hrs....)

Thank you to everyone who has prayed for Sami (and us) this past week. We really appreciate it.  I ask now that you focus your prayers to a little boy named Tripp.  He is 2 and has JEB-H.  It is amazing he has made it this long, but he has amazing parents and grandparents spend 24/7 caring for him.  But he isn't doing so well right now and is in A LOT of pain.  I think it body has had about all it can take.  In the most recent pictures I have seen; Tripp's wounds are very similar to Garrett's on his last day. 

It makes me very sad to see the pain Tripp and his wonderful mom Courtney are going through...they are both so strong.  The outpouring of support and prayers for Tripp has been WONDERFUL!!  Please help it continue; feel free to check out their blog and share their story.

Wednesday, July 20, 2011

surgery update day #2 and #3

I meant to post last night but I went home and had so much to take care of and I didn't get time.

Sami is doing really well!  She is getting out of bed and walking around more often.  She was on IV pain meds but tonight her last IV  blew and she didn't want another one put in so she is on oral pain med which isn't that bad of a things since she has to be on those to be able to go home.

Her pain comes and goes depending on what she is doing or how she is sitting/laying.   HOPEFULLY she can go home soon!!  Joe was suppose to go back to work tomorrow but his mom isn't able to lift Joey because of her PICC line and now my parents are sick:(  So I am really needed at home sooner than later.  Joe is almost out of vacation days....hopefully nothing else major happens this year...

Monday, July 18, 2011

Surgery Update- Monday Night

Greetings from the PICU!  Sami is asleep now.  Surgery itself was about 5 hours but between pre-op, post-op and recovery she was in there for about 9 hours!  We finally got to see her around 5pm.  She was in A LOT of pain and wasn't responding to the pain meds so now she is on a morphine drip through the night.  She says she is still in pain, but she is sleeping well and isn't crying anymore so her pain level must be better.

Surgery went well.  They were able to do the procedure I mentioned in a previous post, which is good.  As long as the rods slide on their own as she grows she shouldn't need surgery again for a while!   She did suffer some skin damage but nothing to major so far that I have found.  She was needing oxygen for awhile while she slept but those have improved and she is off of it for now.

We have been to this hospital before but they moved to the other side of the 5th floor since Joey was last here, so we have brand new rooms and this time there is a bathroom in the room:)  I am so happy I don't have to leave the unit to go pee anymore:)

Tomorrow we hope to get her sitting up and possible up and walking around as well. She really thought she'd be siting up eating dinner playing her DS right after surgery....uh..not quite Sami!

Well I better get some sleep since she is sleeping.  I will update tomorrow.

thanks for all the good thoughts and prayers!

Surgery- part two

2:30pm update- the doctor just came out; surgery just about done, went very well!! They were able to do the EB friendly rods so she won't need surgery every 6 months! She did lose enough blood to need a transfusion but they aren't worried. hopefully we can see her soon. i will post more when we get upstairs to the PICU.

Surgery- part one

4:15am- alarm went off

4:50am- left for hospital

5:30am- arrived at hospital and checked in

6am- called back to prep op

7:30am- Sami is ready for surgery..still waiting for the doctors to appear

7:50am- wheeled her back to the OR

10:20am- nurse Jessica from OR calls to say that because of her EB it took 2 hours to safely prep her for surgery so surgery didn't actually start till 9:50am! Surgery will take 4 to 8+ we are a l-o-n-g wait a head of us....

Tuesday, July 12, 2011

Update on Sami's surgery

Sami had her pre-op appointment yesterday. 

Unfortunately there was some type of miss-communication and the spinal surgery we decided was best for her, isn't one her doctor does very often and needs the assistance of another doctor who wasn't scheduled to assist with the surgery:(  So we had to go see him today and we are glad we did.  He was nervous about doing growing rods in a child with EB.  His roommate in collage had EB (small world!)

He recommended we go with a procedure called the Shilla Procedure.  I will explain it below.  But basically it is growing rods that grow WITH her and she won't need surgery every 6 months.  YEA!!!  They aren't permanent and she will still need a complete spinal fusion when she is 12 or so, but this will allow her to keep growing till then!!    They won't know for sure if this will work for her until the open her up and see her spine up close.  The spine has to be able to bend a certain amount for these rods to work.  So we are hoping they can use this procedure on Monday.  If not, then regular growing rods will be placed and she will need surgery every 6 months to lengthen them.    they think surgery will last 4-6 hours as long as no complications arise and a hospital stay of only 3-4 days!!!  Sami is happy about that one:) 

What is the Shilla Procedure?

This a technique used that allows for the natural growth of the spine and correction of the spine at the same time.

The Shilla is similar to a track and trolley system. The rods are placed but are partially fixated to the spine. This allows the system to “grow with the spine”. Rod breakage can occur and this is a normal outcome. When this happens revision surgery is indicated. This is a newer technique being applied at leading centers across the country.
Pedicle Screws are inserted at specific points in the spine. Screws in the center are holding the rods in place. Other screws allow for the spine to move and elongate at either end.

Surgery is Monday the 18th @ 7:30am.  I will post updates on here and on Facebook throughout the day (and week). 

Friday, July 8, 2011

Happy 4 Months old!

Joey is 4 months old now:)


Weight: 11 pounds 12 oz

Height: about 22 1/2"

He loves to blow bubbles, chew on his hands and all his monkey toys!  He is also smiling a lot more but only when smiled at first.

He is eating about 1/3 of his feed by bottle.  Some days are better than others.  Feeding him using the feeding pump really seems to hurt/bother him and he does much better when we do bolus feeds (feeding quickly using gravity)

Some night he sleeps 3-4 hours at a time; other nights only 20-30 minutes at a time(seriously)

Is looking better, but like eating that changes from day to day.  The bandages are actually causing more blisters, but not wrapping him is hard because even the smallest amount of friction causes the top layer of his skin to peel off:(  It's a double edge sword sometimes with EBS- DM.

The girls and I took some new pictures of Joey today but Grace "misplaced" my camera so I don't have any 4 month old pictures of Joey, but here is some from last week when he was 3 3/4 months:)