Wowza it’s been a long time since I updated this blog. I’m
not even sure where to begin. I guess the obvious place to start would be with
the medicine since that was/is the purpose of the blog in the first place.
Elijah had his cardio workup last Monday. He had all the usual procedures-
Echo, Xray, pulse-ox, Doctor visit, etc. He hated every single second of his
time at UCLA. He his now at the age where he recognizes things and remembers
procedures and he wasn’t feeling it. If you came near him, he screamed. If you
smiled in his direction, he let you have it. Poor kid.
Overall, the news was positive. His oxygen level is still
good in that it is ranging from the low to mid 80’s, his diaphragm is down
(instead of being sucked up into his chest as it was in the past), and his
heart function looked more or less the same (depressed but stable). The echo was pretty much the same as it had
been in the past with a little regurgitation and some narrowing. The most amazing news was that Elijah now
weighs 21lbs 4ounces and is in the 6th percentile. This was
surprising in that Elijah just had a major stomach bug (which landed us at
CHLA’s emergency room) and I was sure he had lost a ton of weight. I can’t tell you how excited I was to hear
that he had gained weight. Talk about happy dance time! It was all I could do
not to break out dancing right then and there. I’m not entirely sure Dr.
Sklansky would know what to do with me had I broken out the moves.
Dr. Sklansky thinks that we will have another appointment in
March and if all goes well, we will have another cath in June. This cath would
be in preparation for the Fontan. The doctor thinks that the Fontan will take
place in August. Ugh. I was hoping for another year before facing another
open-heart surgery. Because all of Elijah’s procedures have been early and he
hasn’t been the most simple case, Dr. Sklansky believes we will need to have an
early Fontan. However, all of this
really depends on Elijah. He needs to gain weight. If his sats stay high
enough, we may be able to postpone the Fontan a big longer. Yet again, we
prepare for the worst but hope for the best.
In other news, Noah turned 4!!! I can’t believe my little
baby is already a little boy. There are times when I look at him that I can’t
help but remember the days when he used to curl up on my chest and sleep. I
love that boy. He is so full of life and headstrong and I can’t wait to see
what he will become.
Of course in all this news, we can’t forget about Christmas.
Family has been in and out of our house since the middle of December. I think
Noah may get a little depressed when the last of the family leaves. He has
truly enjoyed having everyone come and sleep at our house. This is the first
year that Noah truly understood and was able to appreciate the holiday and man
oh man did he. He was in charge of the lights on the house and the lights on
the tree. He and Elijah, along with my mom, made a gingerbread house and mouse
cookies. My sister and I tried to make my grandma’s cookies. Although not a
complete failure, it was also not a success. Some of the recipes turned out
while others were inedible. However, it
was the experience that counted. It was the joy of being in the kitchen with my
sister and remembering our grandma.
I need to give a shout out to my girl Jen. After totally
mocking her when she told me she had tickets to a Beyonce concert, she invited
me to join her. Although I don’t know any of Beyonce’s songs, it was a great
night! I always love spending time with my BFF and add to that a great show
experience and you have a wonderful night.
I really struggle with feeling guilty when I take time to myself,
especially at night and especially now with this new job that demands some
later nights. However, it’s times like
these that feed my soul.
