Wheezy comes,wheezy go....

Hi friends,
In the past few days Sammy is trying to clear his lungs.Same old wheezing in his lungs.
We thought it went away,but last night we had pretty difficult breathing pattern.
I realize that some of his functions are not working anymore and if you think that simple clearing your cough is easy.... It actually take allot of stomach muscles and deep breath to cough.
The only question is if this is in fact another decline what is next.....
Sammy seem very tired ,after antibiotics he is worn out .
All is on my mind is how we can brighten his day? what gives him the most positive emotion?
Laura his teacher from school reads book after book with Harry Potter -we know he loves it,
his bath and massage ,time with family in the evening,sibling cuddling next to him occasionally he will find me next to him snoring.....
This is our regular routine ,life is going and till our hearts stop beating we will be forced to move alone and try to make the best of it.
No questions we love our kids and want to be well for them ,they will always need their parents.

XOXO Sammy and Mom

Balance

Hi All,
Little by little we are finnaly bug free. Sammy is doing well almost done with his antibiotics.
His spirits are down now days.He has been very quite lately.Very little movement or sounds.
It looks like he is ,so tired of all of this . Bath make it worth a while ,water gets best reaction and happiness from Sammy. We try to bath his as much as we can ,mind you that he is just about 100 IB now,so I need major assistance with it.
Family is in OK shape -balance our lives around Sammy is our main concern. Every one has to help out ,only united we can give Sammy best care and support its obvious that hearing all family members voices make a difference for our boy.
We realize that lock of sleep and intense schedules throwing us of scale ,so we take turns to relax
giving each other break, few days a week we rotate it for each other.It can be night out with friend or movies ,the basic idea is snap out of depressing environment just for a moment.
It helps me ,gather my thoughts ,plan our week and get tremendous amount of medical papers ,requests assorted out . If I tell you that in 2 years we received 52 denial letters because Sammy's condition is ,so rare . We hope that new health care plan is in our favor ,but it sure does not look promising,who wants to pay bills for a child in vegetative state........
What ever happens ,happen ,but it must be in most humane acceptable way .
XOXO Sammy and Mom

Symptoms

Hi Friends,
My apologies for not updating my blog lately.
We suspect that Sammy have MRSA . We will find out tomorrow.Its about right time to develop any symptoms by now-its about 2 weeks since Alex came home from the hospital after getting treatment for it.
Sammy have been shouting out sounds ,but we don't know if this is a happy or cry from pain .
Its is very frustrating indeed ,not knowing how to tell. Last week overnight few problems areas appeared and he has been treated for it immediately.Thank G-d for our dedicated doctor , home care nurse, our pharmacists and our medical office that is always there to help us .Thank you.
You better believe it that we have to get familiar with near by hospital staff,pharmacist, etc.
Sammy's teacher and aid from school has been visiting with reading lessons for whole year now.Sammy loves listening to book she reads to him,he can hear and this is one of highlights of his day during week days,Thank you Laura Jacobson for your dedication .
Otherwise , everything is running on my energy,so I better make sure ,I have it enough for every one. One of our kids said that 'our energy bunny needs re-charge'.
Its true ,I like to sleep late for few days ./During this 10 days I must give Sammy his meds every 6 hrs ,so my sleep time is slashed to 6 hr now./
Hopefully ,we can take off for a long weekend soon .We will see how Sammy does....
Happy Spring every one and healthy one!
Sincerely Sammy and Mom