SOLE Custody and a bit of an Update

<3 Little Man
Me and My Sissy!
I got awarded SOLE custody of my son today! This makes me super duper happy! I knew that if I kept strong, and kept fighting and advocating for him, AND I got a PAID attorney, that I would get what I wanted.









I am happy, I just hope that Matthew abides by his visitation schedules, and does what is best for little man, and we can continue to both heal and move toward a healthy coparenting relationship, for our son. (Right now its far from that point)




Me and Holden! Besties!
My friend Chase!
Also, this month, we went to Chase's first birthday! My friend DJ's sister Rachel. Chase is such a ham, and he is only a few months behind Lucius!  Lucius also got to meet Holden, which is DJ and his girlfriend Natasha's kid.

AND we moved into a big boy carseat! Don't worry, we're still rear facing! I am actually one of those moms who believe in extended rear facing for as long as I possibly can, because research shows that their little necks cant support their head yet and is still developing.











I love my sissy!
Mommy, Sissy and I!
We also enjoyed the last relatively warm summer day by backpacking on mommy's back!

I am thinking about getting Lucius his first haircut, because he really needs one, but I am not quite ready to do it yet. I love his little curls on the back of his hair, and his "helmet" hair that he gets.






Exploring!
He loves the park!


Anyway, here are

some photos.


























He will ALWAYS be mommy's baby boy! Look at that hair haha!



























HypoGamma and Hemo what?
















 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.

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.

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.





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