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Monday, August 29, 2011

Happy Birthday Sami!

Sami turned 9 years old today!!

Here she is the day she was born, 5 pounds 6 oz, 19 inches long.... 6 weeks tiny

and here she is today: (with her favorite gift: a new guitar!!)

9 yrs old, 50 pounds and 4 feet 4 inches tall!!

We had her birthday party yesterday.  We decided to keep it small but only 1 friend was able to come.    They made hair bows:

And decorated cupcakes: (sorry the pictures are a little dark)

and of course we had presents:

Of course today on her actual birthday, things didn't go so well.  So forgot to take her cookies in for her class so I brought them to school but the office didn't get them to her classroom in time:(  They will celebrate her birthday tomorrow.  Then she fell at lunch and hurt her back....I thought for sure we'd end up at the doctors or in the ER.  But the pain went away after about an hr and she seems fine.  Then it was bad weather after school and they were delayed getting out and then she had 2 hours of homework (seriously).   Hopefully tomorrow will be a better day (and another busy one too!)

Monday, August 22, 2011

first day of school

I said i'd post and its been a R-O-U-G-H day so this will be quick.  

Today was the first day of school!

Seriously when did I get old enough to have a kindergartner and a 4th grader????????

they had a good day at school from what they said.  Brought home a TON of homework, all for me of course, soooo much paper work to fill out, twice as much since we have two now in the same school!

things didn't go so well at home while they were at school.  I didn't get much sleep last night; woke up with a migraine and by the time I was able to get out of bed we were behind schedule.  For various reasons I decided it was better for Joey (and us as a family) if I did his bandages changes alone in the mornings.  So we got a late start on those and we skipped yesterday so he was a mess of infected blisters and bad spots.  He had been doing really well for me last week when I changed them alone; barley making a peep; but today was another story.   So we made it through that;  Next on the schedule was preschool with Grace.  She REALLY wants to go to school today but isn't old enough for the state's free pre-k program yet and we can't afford a private preschool so I decided to attempt to 'home-school' her this year.  I got LOTS of work sheets with ABC's, numbers, colors, shapes, etc... spend the past week making daily lessons plans for the next 2-3 months, and got her school supplies of her own  but Grace gets frustrated REALLY, REALLY easily when she can't figure out something, even tracing the letters of her name w/ help from mommy,  so there was lots of crying in pre-school today and not much got accomplished.  Plus Joey had a really rough day so he wasn't helping things.  I hope tomorrow will be better. 

Tuesday, August 16, 2011

5 more days...

that is how many days till school starts!! the girls are ready to go back and I am ready to send them back!  We need to get back on a daily routine, before, during and after school!  

This week we are trying to find last minute school supplies (which everyone is out of), putting away school clothes, organizing dressers and trying to find Sami new school shoes.  We went out tonight and the ones she liked were either too expensive, or not suitable for school.  So we will try again this weekend.

She went back to the back surgeon Monday and he is happy with her progress.  She goes back in 2 months and they will take x-rays to check her spine and that will determine how often she goes after that.

Tomorrow we have a meeting at school to add Sami's new restrictions to her 504 plan and then Thursday is 'meet the teacher night'.

Today was the first good day Joey has had in over a week.  His skin in a mess.  Yesterday he was missing a lot of skin on his legs.   His upper thighs are HORRIBLE.   Today some places looked "a little" better.  Itching is still a battle every day.   He is laughing a lot more and is starting to grab more at toys.  He LOVES this sisters, especially when they play with him :) 

I was doing really good, but then went downhill REALLY fast and am now back on my all medication, including the Prednisone.  I hate taking that stuff but I got to the point where I could barely take care of Joey, let alone the other three, the house and still work.   So I will slowly get back down to the lowest dose possible yet still get relief and have the ability to function like a normal person. 

Well that is about it for now.  The next update will probably be the first day of school post, so until then, have a great week!

Friday, August 5, 2011

Almost 5 months old

Joey will be 5 months on Monday!!!  Hard to believe sometimes.  I figured i'd do  his 5 month post now since he is napping (a rare event) and I have a few moments!

first here is a picture:


weight: 13 pounds 12 oz 

length: 24"

He likes to play with his stuffed monkey and will grab into him at times.  But that is about the only gabbing he will do to things (other than someones finger)

He likes to laugh and smile a lot more. 

Unfortunately his skin has gotten worse, along with his pain.  Bath got so bad we had to cut back to 2-3 baths a week (vs every day)  we are still changing his bandages every day but not a full bath.   The upside, his pain seems a little better; the down side, he had more and more build up of dead skin/scabs.    So we are trying to find a balance between the two.  Is hard to remove dead skin from a wiggly baby!  His feet are worse again and last night we discovered his toes are started to fuse to the bottom of his foot due to the dead skin build up.  It's rare but does happen in about 5% of those with EB simplex dowling meara.  I know of one other person with EBS-DM that had this same problem.  We tried to remove as much skin as we could but it caused him so much pain to do so:(  His skin is completely different than Sami's and I worry it will be along time before his skin looks as good as Sami's. 

Speaking of Sami, she is doing better.  She no longer has pain in her back, just her leg.  She is excited to find out who her teacher will be and get back to school to see her friends!

After months of swelling in his legs Joe FINALLY has a diagnoses:  mild vascular ventricular disease. Swelling causes the veins to stretch out and the valves not to close properly causing blood to back flow into the legs.  Only treatment is more walking, wearing compression stocking and cut back on the salt in-take.   So nothing too serious at this point.

Here are some more pictures of our little monkey boy!