We have wonderful news to share!
Savanna went to the hematologist today and we got some good news. Her
neutrophil levels (ANC) were 1600 - the highest ever for her!!!! We
excited. The range for neutrophils should be 1500-8000. So she is finally
within that range (on the low side-but still there).
With this news we will continue to wait on doing a bone marrow biopsy.
will only do it if she goes back down again. We also got the go ahead
a more "normal life". We can take Savanna out now!!! Mom was
so excited she
had tears in the Dr.'s office. We still need to be very careful about
getting sick and they will monitor her very close if she gets a fever
may still end up in the hospital if her levels are low and gets a fever).
now that she is getting older and her levels are looking much better,
still got the OK.
We even got the OK to go to Arizona in April!!. No swimming in the
(too many germs), but she can swim in a little one to herself. We can't
It will be fun to visit the doctors and nurses in Arizona too. Great
is going to love seeing all that she does now.
Speaking of that, Savanna completely sits up on her own now. She loves
Yesterday she did pat-a-cake for the first time. So cute. :) Also the
week she has turned into wild girl. She is nonstop moving girl. There's
slowing her down! It's great. We're finally dealing with "typical"
things. She also dances to her little lady bug's La Cocaracha song.
By the way, her therapies are helping her out tremendously. She is
much more stronger on her left side and she is getting very close to
able to rollover on her weak side on her own soon.
We saw the kidney specialist last week and he said her kidneys have
Yeah! They may continue to get better with time. There is a possibility
the kidneys just had some trauma from her birth and will gradually get
better. He will check her again in 6 months.
Her bloodwork also came back for checking for chemical rickets (which
in the past) and for kidney function. All looked normal!!! So she may
have to take the extra vitamin D supplement for much longer.
They say Savanna still "most likely" has Shwachman-Diamond
Syndrome and it
may take a long time (maybe years) to get a 100% diagnosis. But we are
with the good stuff for now and hoping for the best.
Her bloodwork will be check again April 5th (before we go to Arizona)
will see her gastroenterologist again in April too.
Oh yes! And big girl is a whopping 14lbs 7oz! It still puts her in
percentile, but she's growing nicely on her own curve. Head and Length
the 25th. Hard to believe she's going to be a year old in 1 1/2 months.
Just wanted to share all our great news today!
Hope all is going well with you and your families,
Marybeth, Derek & Super-Size Gettin' Out Girl Savanna :)