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Sunday, September 23, 2012

Rough Week

Last week was a very, very rough week...

For those that read my blog you may remember I mentioned Joey was sick again.  The next morning when I was changing his bandages I noticed his tummy was so swollen his g-tube was popping out; he was also working really hard to breath.  So it was off to the ER we go.  10 hours, 2 x-rays, some blood work and many consults with his other doctors, no one could figure out what was wrong with him but all thought he needed to be admitted for IV antibiotics:/  His white cell count was high but no one could tell if it was a bacterial or viral infection with 100% certainty.  We were not about to let him get IV antibiotics unless he truly needed it.  We finally had to get the head of the Ped's ICU (and Sami's former pediatrician) to come down to the ER.  He checked over Joey, looked at the x-rays and blood work and agreed with us, no admission but he did want more blood work done the following day to  see where his counts where then.  So we went home and back the next morning for more blood work.  His white count was slightly higher:(  ER doc DEMANDED that he be admitted.  Head of peds was paged again.  He came down, checked over Joey, looked at the blood work and said he couldn't justify admitted a toddler with EB, who was happy, eating, drinking, peeing, breathing better and had a noticeably less swollen tummy for IV antibiotics when he wasn't even certain Joey had an infection.    So home we got to go.  But then Joey started spiking fevers about 1-3 hours after his dose of antibiotics:(  It never got higher than 101 and only lasted a couple of hours if that and he was still happy, eating, drinking, peeing, we just watched and waited.  I did some research and asked a friend who is a nurse and the pharmacist at work and one of the very, very rare side effect/allergic reactions to the antibiotic he was on is a fever, occurs in less than 1% of the people who take it!  

So yesterday was his last day of the meds and today, guess what NO FEVER!   So I guess we can add this med to the list of meds he is possibly allergic too.  But at least he is feeling better.

Here are some pictures from the past couple of weeks

Oh and did I mention the radiator on Joe's truck blew up on Thursday?????  More bill...more money to spend we don't have.  between the ER bills, towing and repair bill for the truck last week was a very expensive week:( 

Tuesday, September 18, 2012

Sick again :-(

Joey is sick again:(  Doctor thinks ear infection but he also is really bloated and grunts when he breathes when he is sitting.  The doctors has no idea why.  He breathes fine when he is standing or laying down; his o2 levels are normally most of the time but his heart rate is higher than it should be and he is breathing faster than he should be too.  Could just be EB stuff but he doesn't have the same symptoms as before.  His temp is right around 100 but the doctor doesn't consider that a fever.  Been going on and off from the past 5 weeks. VERY frustrating!!!  If we don't see any improvement over the next 5 days then most likely we will have to take him to the ER.  I doubt we will get anywhere there either but I am tried of being blown off by ALL his doctors.  He is not sleeping well either which means we aren't either.  

Sorry no knew pictures tonight; still need to download off the camera.  But you want you can heard over here and read a blog post I did for the family, friends and followers of baby Easton.

Sunday, September 9, 2012

18 months old!

Joey turned 18 months old on Saturday!  

Here he is when he was just a few days old; he was 6 pounds 8 oz and 19 inches at birth!

Here he is a year ago when he was 6 months old; he was 16 pounds and 26 inches!

And here he is today; about 24 pounds and 31.5 inches tall!

Favorite Foods: gold fish crackers; graham crackers; cheese; Starburst; peaches

Favorite Cartoon Characters: Spongebob and Scooby Doo

Favorite Activities/Things: going outside, climbing onto and into things; bubbles, balls, dolls (hey he has 3 sisters!) giving and receiving kisses- but his kisses are licks:)  the girls don't like those kind but the cats don't seem to mind;-)

New Words: bubble, shake, graham cracker, muh (milk) side (outside); up; out; all done;  

He likes to try and "play basketball".  He LOVES things that he can open and close- there is no such things as a childproof cap in this house; he can get ANYTHING open if he wants too!  He loves to play with his sisters and is a BIG helper around the house.  He likes to open their fridge and take out sippy cups of milk and hand delivery them to Summer and Grace.  He knows who's cup is who's and has never gotten it wrong! 

EB: while is EB is better than it was 18 months ago and even just 3 months ago he still has some REALLY bad skin days.  He still gets large open wounds and many, many blisters some days.  Bath and bandages still take about an hour.  His hands and feet are his best areas (amazing I know) and about 75% of his wounds are self inflicted (from itching:-/)  He is sick right like (likely RSV- the drs office can't test for it so we just treat him like he has it) and his skin tends to get worse when he is sick.  He is no where near where Sami was at this age but he isn't Sami and is MUCH more active than she was at this age (she wasn't even walking at 18 months)  So I am very curious to see how his EB progresses as he gets older.

G-tube: still leaks; some days a lot:(  We went to see the surgeon and we have three options: 1) do nothing and deal with the leaking; 2) admit him to the hospital for IV fluids for 4 days and take the tube out and allow it to close a little on its own and then put a small tube in; 3) remove it permanently.   We are going with option 1 but would consider option #2 if we get to the point where he is losing weight because more calories are leaking out than are going in.  #3 is not an option right now.  He is BARELY on the growth chart as is it.  But #2 isn't ideal either because of the IV, being in the hospital with all those germs and mostly because he'd NEVER sit still for 4 days with an IV in his arm.  He would have to be heavily sedated for that to occur!  So we just deal with the leakage and change his belly bandages 2-3 times a day if need be.   The doctor said it will either leak out of his belly or he'll throw up from eating/drinking too much or from the pressure of just him walking and bending and climbing.  Or in other words just be a normal 18 month old.  We'd rather have his belly leaking than him throwing up multiple times a day.  

Sleeping:  that is hit and miss too.  He is NOT (nor am I) adjusting to this new schedule since school started.  Some days he is up at 6:30am other days I am having to wake him at 8 when its time to take Grace to school.  Some days he takes 2 naps; some days 1 nap some days zero naps. Night time sleeping is hit and miss too.   

 Mr. Monkey

yes, he really tries to shoot the ball into the hoop:)

a cute one of Summer and Grace from tonight:


Sunday, September 2, 2012

Overdue update...

I have been blogging, just not over here but I wanted to give everyone a quick update.  

  • school started two weeks ago, Sami is in 5th, Summer in 1st, and Gracie is in pre-k.  So far its been going well.  Sami and Gracie LOVE school and their teachers.  Summer is just ok at the moment.  They do a lot of work in 1st grade and don't get much "fun" time.  She's much rather have fun time. 
  • both girls are back in girls scouts this year with meetings on the same night of the week again:/
  • Sami and Summer can both ride a two-wheel bike now:)
  • Sami celebrated her 10th birthday last week ( a blog post just on that coming soon)

  • Joey is doing better than he had been last month.  He had some really bad areas of skin and multiple infections in which he needed oral antibiotics for (first time in his life). Bath time was unbearable and even a simple diaper change required pain medicine:(   He enjoys running around and playing with this sisters and getting into things he shouldn't be.  He is almost 18 months old and I'll do a blog post just about him soon:)  

  • My car has been having issues and thankful most of it was covered under the warranty but the rest isn't but it's going to take awhile before we can afford to get the rest of the work done.  But its drivable and that is all that matters right now.  

  • I been busy at work too (Christmas is less than 4 months away!!!)

  • There have been lots of new EB babies lately which has been the reason for my many posts over on In Garrett's Memory

  • You can "meet" one of the new babies, Easton, here.  He is more severe than Joey and his pictures are quite graphic.  He is 10 days old and is one of two (at least) EB babies born on the SAME day!  How crazy is that???

Well here are some recent pictures.  Sorry none of Gracie....she is camera share these days.

 future basket ball player

 sponge bob boy

 our little monkey...