August was a rough month for me…. Well, really, for
both Matt and I. We’re trying to find our “new normal” but really, what is
normal?
Matthew is now engaged to his fiancée, Isabella, and
they are living together. I am still single, and I am working on myself.
Lucius started his infusions. I know some of you are
probably like wait, what? Infusions for what. Let me catch you up to speed on
some things.
In March 2018, Lucius saw Hematology for the first
time, for a work-up of Hemophilia and Factor V Leiden, since there is a family
history. When I was pregnant, I saw Genetics at Cleveland Clinic, who told me
very clearly that I didn’t have Hemophilia, because woman don’t bleed. I have
results that say otherwise now, that I am a carrier of Hemophilia.
Dr. Ahuja decided at that time, in March, to run some
tests on Lucius to see where he was at. I knew he was going to have both. Call
it mom instinct or whatever, but I had hope that he didn’t, based on what the geneticist
had told me.
His factor level was tested, and he came back low, at
45%. He also came back having Factor V Leiden. We knew he likely would, just
based on my family history on my moms’ side alone. We know my mom also has Factor
V, and my nana does not, so it came down from my Grandfathers side.
As for the Hemophilia, this came from my dads’ side,
and came down from my dad. Lucius was diagnosed with Mild Hemophilia B,
officially, in March 2018. I cried when he was officially diagnosed, because I
was hoping that he didn’t have it, based on the genetic testing that was done
on me.
Mild hemophilia B is a form of hemophilia B characterized
by a small deficiency of factor IX leading to abnormal bleeding because of
minor injuries or following surgery or tooth extraction. With Mild, you only must
worry about head injuries, surgery, dental work, or major traumas like being hit
hard in the gut. You also must worry about joint bleeds long term.
The doctor said that the plan was simply to re-test
his factor level in a year. So we have a year follow up for March of 2019, and
in the meantime, hope that Lucius doesn’t get any bleeds.
Well, fast forward to the end of 2018. Lucius had three
bleeds. One in August, which was the result of him walking backwards, slipping
and falling into the entertainment center. The other was the result of his
sister playing with him, and knocking him off the bed, and then there was the
fall to the cement stairs outside which cut his frenulum. I think that one was
the bloodiest. All of these were head injuries.
The ER administered Amicar for the mouth bleed, and
Benefix (factor) for the others, for on-demand, and basically told us to follow
up with the doctor.
Speaking of August…. This was also when Lucius was
diagnosed with Hypogammaglobulinemia, a rare form of immune deficiency.
Such a big word for a little guy…
Matt and I knew there were a chance that Lucius
would/could have an immune deficiency because he and his mother also have forms
of immune deficiencies.
Looking back, Lucius had a rough first year of his
life, I won’t lie. Between his Milk Protein Soy Allergies, and being sick with chronic
ear infections, a bout of RSV twice, pneumonia once, and always being sick with
upper respiratory infections, I thought this was normal for him.
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| Here is Me Prepping Lucius Infusion |
We went to see an immunologist in May of 2018 to find
out why. It was just before his first birthday. Lucius had some testing done
based on Matthew having a family history of immune deficiency, and the fact that
he was always sick with these infections. Than the doctor ran vaccine
challenges, and then the doctor told us that he would need infusions of a medicine
called Hizentra. This drug was meant to replace his immunoglobulin that he did
not produce, and it was meant to attempt to keep him out of the hospital.
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| Here is Lucius with his wonderful nurse, Leslie. We love her dearly. |
So, little man has weekly infusions of this medicine,
with our wonderful nurse Leslie (and Patti and Sue) and it stinks. It stinks
because I want the world for this little guy, and don’t want anything to be
wrong with him.
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| Here is a photo of Lucius Infusion Supplies |
When I was pregnant with Lucius, I was very fortunate
to have found out as early on as I did, otherwise, I cannot say for certain
that my son would still be here today. As parents, we tend to not want anything
to be wrong with our children.
It breaks my heart that he has to go through so much
at such a young age. But he is a warrior.
Also, random, but I cannot believe I am going to be 29 soon. I feel olddddd
Born: June 25th 2009
