Has it really been 6 months since our last update?! Whoops…Sorry. :-)
We’ve had a great summer! Savanna is 2yrs 5 mths now and is talking up a storm. She also runs, jumps and climbs. She is all caught up developmentally and is only getting therapy assessments every 3 months to make sure she stays on track. She recently had her eyes checked and they are great.
Concerning growth – doing well. She’s 25 pounds and about 34 inches tall. So still sticking to the 25th percentile on the growth charts. She looks very tall since she is so thin. However she’s pretty balanced out according to the charts.
Health – did very well the past 6 months, until just recently. In May her ANC (absolute neutrophil count) was 1350. Which is below the 1500 minimum, so considered to be neutropenic again. Plus it was a slight drop from the January ANC of 1734. However nothing changed for us since it was still pretty good and just considered to be mild neutropenia. At the beginning of September, her ANC when back up to 1700!!! We were thrilled. A week later Savanna got an unexplained high fever that lasted for 5 days and dropped her ANC to 468 (considered to be severe neutropenia). We were planning on going on vacation the next day to California. The doctors told us not to go and they were also considering putting her in the hospital. The hematologist said that we could put her on antibiotics and just watch her closely at home since she has been very stable the past year. This all just took place 4 days ago. Savanna’s fever has been gone for 3 days and today she finally seems like her old self! Hooray! We now have to be very careful she doesn’t get sick again so that her neutrophils have a chance to increase again. For now no playgroups, no parties, and no swimming class. She can still go on errands with us and play with one or two friends (if they’re not sick of course). She will have a recheck of her blood in a couple weeks. By the way, she’s been diagnosed with “Chronic Benign Neutropenia”, which she may or may not grow out of somewhere between age 4-7. At least we finally have a diagnosis.
Other past doctor visits - We visited the gastroenterologist in April. He said he doesn’t think she has Shwachman-Diamond Syndrome at this point and we don’t need to see him again unless she has troubles. We saw her nephrologist (kidney specialist) in March. Her kidneys were looking very good. Another relief! See what I mean… Great past 6 months! Plus, we had no illnesses until very recently.
Some other family notes:
Marybeth is still working on the newsletter for the parents of NICU babies from Good Samaritan hospital every quarter. She is also working on a Babies First 2 Years calendar for NICU babies and their parents. In December she is planning on attending a conference in Georgia for NICU staff and parents. It should be very interesting.
Since we’ll all probably be wondering what course Savanna’s
little body is going to take. I will try very hard to send out an update
more frequently! J
loves hearing from you!
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