


Brent also picked up a trach infection this past week so we are treating it with another antibiotic in hopes it'll settle it. He's now taking 4 different antibiotics a day. I cannot wait to cut back on these after the thymus transplant and give his body a rest.

Brent’s doing such a great job respiratory wise but our
little guy is having a seriously hard time gaining weight. He’s been 14 lbs for
the past few months. He is slowly getting longer which is good. His blood
calcium his been high for months so we’ve been adjusting his meds according to
his labs. The kicker is that we cannot increase his feeds for him to gain
weight with his calcium being high because it’ll increase it even more from the
calcium in the formula. His most recent lab work showed that his calcium has finally
come back down to normal so I’m going to hop on it and see about doing
something for the little guy and get some more food into him.
We also met with his Nephrologist (kidney docs) about a
month ago. I’d been dreading that appointment, not really knowing what to expect
but just somewhere in my heart knew something and my mind just wouldn't acknowledge it. It absolutely crushes my heart & soul for me to share the bad news we
get because I want to be nothing but positive for our sweet boy. The doctor
said that Brent’s kidneys have, in fact, gotten smaller since September 2013.
They measured at 5cm in September and 4.7cm recently. He’s diagnosed with
Chronic Kidney Disease-Stage III. Both kidneys are working at 40%. The positive
news out of this is that they are working well enough for him to be cleared by
the doctor for his thymus transplant. At this time we’re not going to dwell on
the fact that Brent will most likely need a kidney transplant in
the future. As to when, we don’t know. When we got this news it took days to
accept it. I still struggle from time to time and breakdown thinking about it. It’s
our worst nightmare from the very beginning coming back to haunt us. Not that we’ll ever give
up but it’s a process mentally; we feel & experience every emotion you
would expect to from this but we try everything in our power to get into a
positive state in which our sweet boy needs us to be in. We are all watching
his kidneys closely and refuse to give up our faith that they can still
possibly recover. Brent has proved many things wrong in the past and is living
proof that miracles do happen. One thing at a time we've learned works best for
us and for Brent. We’ll take it one day at a time and we’ll do it together.
To show just how small our world really is, we've been connected
with a family who has a beautiful 3 year old girl who 2 years ago received a
thymus transplant at Duke to help with her lack of t-cells from complete
DiGeorge. Their sweet girl has other complications different from Brent, the
two basically just share the lack of t-cells, but it’s given us a new found
hope and to see the success that it’s brought this little girl and her family.
It puts a smile on our faces and gives us something beautiful to look forward
to. She’s able to go into public and play with her cousins and live a somewhat
normal lifeJ
Having a set of parents who can relate to us on a level that no one else can
has been an absolute blessing. We spoke for a long time on the phone sharing
stories. I got off the phone that first time & cried, thanking God for
sending this family into our life because they've been the positive that we so
desperately needed. They assured us that Duke was the right place for Brent and
he will be in the very best care there. We want them to know we think of their
sweet girl every day and they’re not in this journey alone. We look forward to
the next step of our journey down there and thank God every day that our sweet
Brent has hung on this long and that we’ll have many more years together with
him.

We've done everything on our end to get Brent ready for the transplant so now we're just waiting on a few clearances on a research basis on Duke's end. They are getting ready to present Brent to the BMT board at Duke, where all the doctors will discuss what is going to be the best treatment for him. This is a huge step so hopefully we'll hear something soon.
Our community has really shown us just how wonderful people are
and how much we all care about one another. The Chive of VA had an event in
honor of Brent in VA Beach at the beginning of June. We are so touched that
they shared our Brent’s story and celebrated our son. It touches our hearts and
we thank them so much!
Our friends created The Sunshine
Event for Baby Brent that took place last Saturday 7/12/14 at the Fredericksburg
Fairgrounds. All the amazing people who put it together and all the volunteers have
a special place in our family’s heart. All the time & effort they have put
into the event, it means the world to us. Whenever I tell someone about it, I
tear up and get emotional because at the beginning of our journey we never felt
so alone, which is the complete opposite of how we feel now. We’ve never felt
more love and support for our family ever. I want everyone who has helped put
these events together, everyone who donated auction items, money etc., everyone
who came out for the events, and everyone who played a part in promoting the Sunshine
Event to know that you’ve truly made a difference in our family’s life. This
had been more than we could have ever dreamed of. To have our entire community
pulling for our Brent, I mean the feeling is almost indescribable. You’ve all
shown us that we’re never alone in any of this. We’re all here together. Thank
you from the bottom of our hearts. Peace. Love. & lots of Hope.<3