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Thursday, May 26, 2011

Carson and John

I have been wanting to blog about this for a week now....just having trouble finding time.

You see there is this AWESOME family in California, the Cannell's. They are a blended family with a total of 8 kids, the oldest has EB.  They are currently in the process of adopting not one, but TWO boys, brothers, from East Europe who have been in an orphanage all their life:(  And for anyone who has looked into adopting you know how costly it can be.  This family has to raise a lot of money in a very short amount of time.  Thank to two WONDERFUL EB mom's that I know, the Cannell's have received over $5000 in donations in less than a week just by Patrice and Courtney talking about Carson and John on their blogs!!! 

I wanted to do my part and spread to word to my family, friends and blog reads who might not have heard of this story before!

I read more about Carson and John and what all is involved in an international adoption, please read the blog post Patrice just wrote this evening!  

She sums it up MUCH better than I could:-)

Sunday, May 22, 2011

random stuff

just some random things to share:
12 days of school left (not counting weekends)

we have new neighbors (the house had been empty for almost 2 years)

i love Ben and Jerry's new ice cream: Boston Creme Pie:)

Sami's surgery is scheduled for July 18th:(

the picture above is my new blog button (till I can get a more updated pic of Joey and Sami).  If you'd like to 'snag' it for your blog, let me know and i'll send you jpeg of it:)

2 months old

Actually Joey is 2 1/2 months by now....i haven't had time to write up this post till today.


Weight: 9 pounds 13 oz (with bandages, a onesie and a diaper on)

Length: 21"

Feedings: 3 oz every 2 1/2- 3 hours.

Developmental:  he is delayed per his developmental evaluation last week.  He smiles once in awhile but not as often as he should be.  He doesn't make any "normal" baby noises other than crying.  But they feel his hearing is fine.  He doesn't try to "bat" at toys when placed in front of him.  He qualified for "speech" therapy but not feeding therapy like he needs because he has a history of aspiration and is too much of a liability for the state to receive therapy at home:(  So we have to wait till later this summer for the feeding clinic to open up at the hospital.

Sleep:  he sleeps anywhere from 1-4 hr at night and anywhere from 20-90 minutes during the day.

Skin: he has a lot of involvement right now.  G-tube site won't stay healed; his lower belly has no skin; arms, legs, hands and feet vary from day to today.  Today is right leg is missing more skin than it was a birth:( We still change his bandages daily and I am doing them on my own 1-2 times per week.

We also suspect he is allergic (or at least extremely sensitive) to Soy.  The insurance won't cover his g-tube formula so I started buying the Target brand of his formula since the other kids did just fine on it (and its less expensive:)  but we (Joe) noticed that he gets really agitated and cries A LOT when on it and I looked at the ingredients and it contains milk and soy, where as the name brand doesn't contain soy.  It would also explain why he reacted so badly to the soy formula. 

But over all he is doing good:-)

I was going to post pictures but the monitor to my PC died and i don't have a way to upload pics to my lap top. 

Monday, May 16, 2011

Update on Sami

Last Monday Sami had an appointment with her orthopedic surgeon.  For those new to my blog, in addition to EB, Sami was also born with congenital scoliosis.  Having EB has complicated treatment of her curve, as we were not able to use a brace to slow the progression of the curve.  She had her 1st surgery when she was 2 1/2.  But it didn't work and by the time she was 4 her curve had progressed to 85 degrees and was affecting her heart and lungs, so she had another surgery just after she turned 4 and the doctor fused the small portion of her spine that was curving.  He was able to get her curve back to 45 degrees!  It stayed there for over 4 years!  Until now:(  

The x-rays last week showed that it had not progressed to 77 degrees in less than 10 months.   Time for more surgery and we just found out today that it will be on July 18th.  After consulting with the Pulmonologist, it is best that we go the route of growing rods to allow her rib cage and chest cavity to grow more.  The other option is to do a complete fusion which would correct her curve forever but she'd always have a chest cavity the size of an 8 yr old:(   

The growing rods require surgery every 6 months to lengthen them and more if needed if one would break or come lose or she out grows them.  She most likely won't out grow them as this is to buy us time till she is 12 or 13 and stopped growing.  So she'll only need them for 3 years or so but will have to have a complete spinal surgery at that point.    The surgery is about 10 hours long and she'll be in the hospital for about a week. Her last surgery took about that long and she was out of the hospital in 6 days w/ no complications so hopefully this one will go just as well.  

I'll keep you all posted.

Sunday, May 15, 2011

Deals of the Day!

I have so many things I have been wanting to blog about, but there just isn't enough time in the day!

But here is my deals for the day!

all items (but the baby shampoo and baby Tylenol) I had a manufacture and/or Target coupon for!!  Over $140 worth of items that I paid less than $70 for!  Which means I saved over 50% in coupons and discounts!!!!  1/3  of them were BOGO Free!!  I think we will be set on many thing for a while:)  And 192 diapers should last Joey almost 3 weeks!!

Wednesday, May 11, 2011

An Angel gets their wings...

March 17, 2000 ~ May 8, 2011

Another angel got their wings:(  I had known for a while that Amber's health was failing and I had prayed and hoped each day that she would recover but as the end seemed to get closer, a had a feeling that for some reason, May 8th, Mother's Day, would be the day.  I hoped I would be wrong; apparently God thought May 8th would be a good day after all to bring her home.  Below is a story of how I met Amber. 

I first "met" Amber through her mom, Sandy around 7 or 8 years ago on an on-line EB message board.   At some point in our correspondences she mentioned that they lived in Michigan.  I grew up in Michigan at had just moved away about a year or so before I met Sandy so I asked what part of Michigan they were from, expecting her to say, somewhere on the East side of the state, as most of the EB families in Michigan lived on that side of the state.  I was completely SHOCKED when she replied that they lived in Holland!  I lived there from the age of 9 till I was 23!  Then when I found out where in Holland they lived, I was even more shocked; their house was less than 2 miles from the house I grew up in!  During the summer of 2003, my family and I came back to Holland to visit family and friends.  We arranged to meet Sandy and her family.  I remember stopping by their house and meeting Amber who was about 3 at the time and I was shocked on how good she looked!  I remember telling Sandy that if I didn't already know Amber had EB, I never would have guessed it, let alone that she had RDEB.  

We kept in touch over the years and seeing them once in a while when we came back to Holland.  I'll never forgot the email I receive from Sandy after her grandson was born telling me that the doctors suspected he had EB too.  What are the odds that a person would adopt four children, one with EB and one of the ones without EB would go on to have an EB child of her own.  I think we figured like a billion to one or something.  Sadly, Le'Trell was only with us for a short time and became an EB Angel on December 14, 2009, which hit very close to home for me; as December 18, 2004 was the day our only son, (at the time) became an EB Angel as well.  Our families now shared a grief that I would never wish upon anyone. Looking back, I now wonder if Le'Trell was God's way of preparing the family for what was to come?

My final time with Amber was last summer there was an EB Conference in Ohio and we worked it out and planned our annual trip to Michigan over the same time so I could attend the conference.  Sandy decided to attend as well and was nice enough to let me share a room with them and give me a ride back to Michigan.  So I had the honor of being around Amber, her nurse Pam and of course Buddy for a few days.

Now here I sit, over a thousand miles a while, wishing I was closer to help Sandy and her family get through the difficult transition a little easier.  I have been where they are now and know what the next few weeks, months and years will be like for them.  Sandy and Al not only belong to the secret club of parents who have lost a child, but also to the one for parents who have lost a child to EB  No one every wants to be a member of either club; but once you are, you feel an immediate connection to other members because no one can truly know what it like to have lost a child unless they have been through it themselves. They have been through so much over the past couple of years, but I know they have the strength and faith to continue on.

Sunday, May 8, 2011

Happy Mother's Day!!

Happy Mother's Day!!

I had to work this morning at 3:30am...yea I am dedicated employee!  But I felt like crap!  Sore throat, my ears, head and face hurt too:(  I made it till 9 am and ended up coming home.  I nap for a bit with Joey till he woke up and then laid back down with him a little later again and slept for a while.  Of course that means NOTHING I wanted to do today got done.  We got Joey's bandages done around 5 and then I told the girls I had a surprise and to get their bathing suites on and flip flops.  We loaded in the car and headed downtown to a something new they just put in; an area with water shooting up from the ground for this kids to play in!  It was pretty neat.  The girls were as impressed as I thought they would be but they had fun.  We had KFC for dinner and then ice cream:)  

I asked for nothing for Mother's Day.  There is nothing I wanted or really need.  The girls made me cards at school and that was the bests gifts i could get.  It's hard to believe this was my 8th mother's day!  Seems longer than that in some ways; other times, i am like wow, really 8 years!  Mother's day never really that big around here; I know I am blessed and feel so grateful for the 4 living children that I have; but still misses the 2 that are in Heaven.  And sometimes that grief of those two is more powerful than the joy than comes from the 4.  I know those that have never lost a child will struggle to understand that; but I also know those that have, will understand it prefectly. I also struggle with the absence of my own mother, who is still alive (to my knowledge) but chose 6 years ago not to be apart of the lives of her child anymore...I have many friends who have had their mother taken from them so unexpectedly and I feel so guilty since mine is living but chooses not to be apart of my life.  I know I shouldn't feel guilty over that but I do.

Tomorrow Sami and I have an EARLY morning!  She has an appointment with her back doctor...she asked to go see him...which those who know her and her dislike of doctors, knows she must be hurting:(  Her back has been bothering her and to look at it you can see her spinal curve has gotten worse:(  So we are off to see him and get some x-rays and see what is going on.  So please pray that isn't nothing serious...she will need one more spinal surgery but we were hoping to wait till she was 11 or 12...not 8 almost 9.

I will leave with you a quote that I found on a blog I follow of another mother who also has two angels in Heaven:

"Mother's Day is a day of appreciation and respect. I can think of no mothers who deserve it more than those who had to give a child back ~ Erma Bombeck
And a picture of the 4 reasons I get up each day:
P.S.  I have two pray requests: one for Joey's nose- he is constantly "stuffy" and it makes it hard to breath at times.  I will post more on this later... and for a friend, and fellower EBer, Amber.  She isn't going very well these days and will most likely get her butterfly wings soon:(  Please pray for her recovery but if that is not to be, than for a painless and peaceful journey for her and her family. 

Friday, May 6, 2011

End to a busy week!

Yea its Friday!  I do have today off but I have to work all weekend. 

I went back to work Wednesday.  It hardly seemed like I had been gone for 10 weeks.  Everyone was very happy to have me back!  I am the only one who does my job and though the person who filled in for me did a good job, it wasn't the same as having me do all the work and they are happy I am back and I am never allowed to leave again:) 

Joey had his follow up swallow study on Thursday.  It went better than expected.  He only aspirated once during the test!  We can S-L-O-W-L-Y start feeding him by bottle again, like 5cc per day and work up from there.  He still needs feeding therapy, but that is become a slow process to get the ball rolling on that one.

Today he was suppose to get his g-tube button changed out but Summer had a mother's day program at school so I reschedule the appointment for early next week.  But Wednesday night was one of those nights were he was up almost all night was worse when we hooked him up to the pump to feed him and we were worried something was wrong with the g-tube.  So we called the doctor on Thursday but he was in surgery all day but they fit us in on Friday so Joe took Joey to the doctor while I went to the program at Summer's school. 

The Surgeon said the g-tube site looked great!  Better than kids w/o EB!  He removed some more granulation tissue and replaced the Mickey Button (they need to be replaced 6 weeks after surgery and ever 4 months or so from here on out)  He thinks the pain is from nerve ending growing back.  It makes sense; i have similar pain from my c-section incision.  Unfortunately there isn't much we can do other than try to comfort him when he is being feed.    At least there is nothing serious wrong with the site or g-tube itself. 

That is about it for us.  Have a great weekend and Happy Mother's Day!

Wednesday, May 4, 2011

Hi-Ho, Hi-Ho, its back to work I go!

Well folks, its been 8 weeks if you can believe it! 8 weeks since our little baby boy entered this world.  I was fortunately to get 8 weeks (partially paid) off from work but now its time to go back!  I start back tonight and will work 2 nights during the week and then during the day on the weekends.

Since I am going back to work, I have started doing Joey's bandages during the day, by myself.  It takes me about 1 1/2 hours which isn't too bad.  But still a good chunk of time.  Two was the 2nd day and it went better than yesterday.  So hopefully it will continue to get better.

Tomorrow morning Joey has another swallow study to see if he is still aspirating when he swallows.  Please pray that he willing drinks the stuff after not being able to drink by bottle for the past 6 weeks and that the tests results in good news:)  He has been spitting up a lot more lately and back to "gargling" again at times:(   He is also breathing more noisy at times too.  And a lot more fussy too.  So we aren't sure what is going on with him.  But hoping for good news or at least some answer tomorrow at his appointment.  I will try to post tomorrow after we get home to let you know how it went. 

Sunday, May 1, 2011

a picture post

 does not like his picture taken!

 a mama's boy:)

 sleepy baby

 tough guy:)

 Summer at Easter

a picture of Sami's 3rd grade school picture
(sorry I don't have a scanner anymore)

Gracie in her Easter dress