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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)