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Tuesday, June 28, 2011

Why I don't hate EB...

Warning.....if you are the parent of an EB child and/or a person gets offended easily, you may not want to read this post.  I intend no disrespect to anyone, this is just the way I feel.

Sunday night before I went to bed I knew that one EB baby (baby A)  had gotten their wings.  I remember thinking this was the first EB death this year of a baby also born this year (that I was aware of) and sadly, I wondered who is next.  For some reason EB Angels always go in pairs (and sometimes 3 at a time).  Little did I know that when I woke up the next morning not only would I learn of one, but two more deaths:(  Baby L got his wings Friday and baby M got his wings Monday morning.  Three at once is hard to deal with as a community.  There were a lot expressions of 'I hate EB' going around Monday.  And as crazy as it sounds, and all that I have been through, I don't hate EB.  I may dislike it at times, it makes me cry a lot, it may cause a lot of stress in my life, on my marriage and among my family, but I don't hate it.  It is a part of who I am; has been since the day I was born.  It has made me the person I am today, allowed me to do the work I do, helping other EB families.  I have met so many WONDERFUL people BECAUSE of EB.   Sure there is a lot of sadness that comes along with EB; about 1/3 of all EB babies born each year don't make it till their first birthday, I know that sad fact all to well.  

I try not to take it personally when people say they hate EB; I am not EB, it is just a part of who I am; just like that fact I have brown hair and brown eyes.   But it still bothers me when I hear that phrase.  I know how hard it is to care for a child with EB and I know how devastating it is to lose a child to EB.  But I also know what it is like to HAVE EB and remember what it was like being a child with EB and hearing people say they hate what you have.... it really does a number on ones metal health.

People tell me not to take it personally or not to get to close or maybe that its time for me to back off for a while...but how can I?  How could anyone?  I can't walk away from these families especially these three families.   They need all the support they can get at a time like this.  I don't expect anyone to see things they way I see them; nor change their way they think or they things they say; but please don't tell me to change the way I feel either.....

Here are the three main reasons I don't hate EB...because without EB, they never would have come into our lives.

Thursday, June 23, 2011

GI Dr Apt

Joey had a follow up with the GI doctor today.  Despite being the FIRST appointment of the day we had to wait 20 minutes to see the nurse practitioner and then it took her 20 minutes to update the doctor and come back into see is.  I had to take the girls with me, 1 out of 3 behaved:(

Weight: 11 pounds 8 oz as is (11 pounds w/o bandages, etc...)
Length: 22 1/4 inches 

They upped his reflux meds as he is still having issues when he eats via g-tube and screams almost for every feeding.  We go back in August (after school starts, yea!!!) for another follow up and then he'll be scheduled for another swallow study and digestion rate test (to see how fast his stomach empties and to see if he is truly refluxing when he is g-tube fed.  They suggested we discontinue feeding therapy at this point since he has so many blisters in his mouth and its hard to eat by bottle and no amount of therapy will change that.  He seems to be having some swallowing issues from time to time, but with the oral blisters its hard to do exercises to help improve that at this point.  So that will be one less things on the schedule each week!  

So far he has NO appointments for July.  YIPPIE!!!   Just Sami and I so far have appointments in July.

Not much else going on here.  The weather is still VERY HOT.  The A/C has a hard time keeping up most days.  

Joe's leg still isn't any better and is waiting on an appointment for a vascular ultrasound to check for blood clots:(  Prayer for that are appreciated.  

Here is a picture of Joey with his new buddy who is almost a big as he is:)

Monday, June 20, 2011

Not a whole lot to report

I don't have much good news to report so I haven't felt like blogging much.

Sami's surgery is set for July 18th @ 7:30am (we have to be there at 6am) and she is getting really nervous about it.  Don't even ask how I am feeling about all this....

Summer is 5 going on 15 with the mouth and attitude to go with the rate she is going she may not make it to Kindergarten....

Grace is 3 going on 13 and turning into Summer's mini-me.

Joey's g-tube popped last week so I had to change that out on my own; he is eating more by mouth but seems to have a blister in his throat or something because he has been coughing gagging and choking a lot either while eating or just after his tube feeds which is screams almost the entire time he is hooked up now...not sure what that is all about...he is also back to crying  A LOT during the day (and night) too. 

I am not doing very well but I won't go into a lot of details because apparently I 'brought this on myself' and 'not allowed to complain'. 

But my shoulder has been bothering me a lot especially at work or when I am on the computer.  I jumped up my dose of meds (and will tapper off over the next 10 days) to see if the pain is related to inflammation or if its something else going on. 

Joe is back at the dr again, his ankle is still swollen after 2-3 weeks, 1 x-ray and a dose of antibiotics...hopefully they can finally figure out what is going on and it doesn't involve a hospital admit for him....

here are some recent pics of Joey:

Wednesday, June 8, 2011

3 months old!


Weight: 10 lbs 1 oz as pictured (w/o bandages, clothes and a diaper he is 9 lbs 9oz)

Length: 22 inches

Sleeping habits: still only 2-3 hr at a time if we are lucky

Eating Habits: 3 oz every 2.5-3 hrs round the clock by g-tube.

Likes: Sami, being held, riding in the car

Dislikes: getting into the car seat, baths, loud noises

Medical stuff:

He is still having a lot of GI issues so we went a saw a GI doctor.  He stared Joey on new medication and we are going to start adding rice cereal to his feeds and see if anything changes.   If not, the Joey will need more tests and possible surgery:( 

Still no more breathing issues so he is allowed to have small amounts of formula each day.  Sometime he does ok, other days he struggles to suck and or gags and chokes a lot:(    We saw the ENT yesterday and he doesn't feel the need to see Joey "just to check in" unless something comes up.  So that is good.

Developmentally, he is behind.  He just started smiling within the past couple of weeks but doesn't do it regularly.  He also doesn't make 'cooing' sounds.    The therapist thinks its because he doesn't use his mouth muscles to drink on regular bases.  So he get OT starting tomorrow.  He only gets 20 therapy visits per year and I think he needs feeding therapy more so we'll see how long it lasts.

His skin varies from day to day.  Like many with EBS-DM, the bandages actually cause more blisters but his skin is still so fragile and he needs more than clothing to protect the skin.  We started something different with how we wrap his arms last night so hopefully we'll see improvement.  

He is also teething already and has many fussy days and nights.  

That's about it for Joey.  I am very happy we made it this far and overall he is doing well:)

Here are a couple of more pictures of him.  

Pre-School Graduation

Today is the last day of school, but Summer's school had graduation last Thursday (I have no idea why).  Here are some pictures from the event:

 in her cap and gown

class picture

 getting her diploma

so grown up...and off to kindergarten she goes....

Tuesday, June 7, 2011

We are still here

I know I haven't blog in awhile:(  Been wanting too but haven't felt like it most days.  Things are 'ok' here.  A lot of stuff going on and I have a lot of stuff I am dealing with.  Nothing major, just a lot of small things and then they add up to big things.  

Tomorrow is a big day....last day of school...and Joey turns 3 months:)  So look for 2 or 3, maybe 4 blog posts coming up this week!