Now that Flint has been out and about, he’s been able to
meet a lot of people who have shared in his story from the beginning. Soon after meeting Flint, people invariably
comment on how great he seems to be doing and then they ask about his future
progress. I realized that I have not
done a good job explaining Flint’s current status as well as the prognosis for
Flint’s future. While the specifics are
yet to be determined, there is a lot we can tell already at this point.
From
what I understand, when any baby is born, there are so many neurons that aren't
making connections yet. That's why we have to do everything for a baby! As they mature, the neurons connecting is what
enables the baby to start holding things, crawling, walking, feeding
themselves, etc. The question in all of this, is will the neurons that normally
connect through the vermis (which is underdeveloped in Flint), be able to find
new pathways? FREQUENTLY they can. It's
just like when a stroke victim has to relearn how to walk. Part of their brain
was damaged, so they have to train their brain to make new connections. That's
basically what Flint will have to do, and the good news is that babies’ brains
are SO much better at forming new pathways than are adult brains. We will just
watch to see how he reaches milestones, and when something isn't coming at the
right time, we hope through physical and occupational therapy, that he will be
able to eventually learn to do it. He just may have to work a LOT harder than
other babies to master it. But that’s
why we named him Flint, so we are OK with that!
The
doctors are very hopeful about what they CAN see right now. His reflexes are great, he sleeps and eats well,
and for the most part, is reaching milestones like they want to see. Dandy Walker comes with an increased risk of
blindness, hearing issues, extra digits, and seizures, but Flint has not had
any issues with these things. Dandy
Walker also tends to go hand-in-hand with other brain abnormalities, but from
what they can see at this point, Dandy Walker (with hydrocephalus) is the only
problem he has. These are all REALLY
good indications that Flint will live a very normal life. His neurosurgeon, Dr. Errington, said with
all those things working in Flint’s favor, the Dandy Walker will probably just
mean that he will have some developmental delays, but eventually he should
catch up to where he needs to be.
As his
mother, there is very little I see to indicate that there are bigger issues going
on with Flint. At this point, he seems
pretty much like any other baby his age (6 ½ months chronologically, but 5
months adjusted). It’s taken him a
little longer to hold his head up, but that really is just because it is so
much bigger than the rest of him. He
smiles and laughs almost non-stop, sits up with help, grabs things with his
hands, loves his mobile, sucks his thumb, rolls from his tummy to his back,
jumps in his baby jumper, and is starting to eat solids. Right now, the only
thing I see that is different, is that he really is very content to not move
anywhere. He loves to lay on his back
and just look around. If you hold a toy
up, he will immediately try to get it, but if he has to roll on his side to reach
it, he decides it’s just not worth it and he’s content to go without. Some of this could be his temperament, but I’m
guessing that some of it is because of his Dandy Walker. The vermis is a tiny part of the brain that
affects gross motor skills, so larger movements are where the delays are more
likely to occur. He’s started weekly
physical therapy to help him with rolling over, and it may take a while for him
to get the hang of it, but I am totally comfortable with the whole process. Flint has his own schedule of getting things
done, but I am extremely confident that eventually, he will get it figured out! I included a couple of videos at the end so you can see how well he's doing and how cute he is!
The one
immediate question we still have, is whether or not the shunt is working as
well as it needs to. Back in January, a
CT scan showed that the ventricles in Flint’s brain are still very full of
fluid. Our neurosurgeon encouraged us to
meet with the pediatric neurosurgeon in Dallas to see if that’s normal for a
baby of Flint’s age, or if we need to put in a different kind of shunt that
will drain the fluid better. Flint has
an MRI scheduled in Dallas this Thursday, so we’re anxious to meet with Dr.
Weprin and see what he has to say. We
are PRAYING that all is well and that once Flint’s soft spot closes up, the
shunt will drain more effectively.
Our
family just feels SO blessed by everything that has occurred with Flint! We are amazed at all the miracles we have
witnessed and are so grateful to have this angel baby in our home. He really has such a tender, sweet spirit,
and I feel so humbled to have been chosen as his mother!
It’s
been humbling to watch people’s responses to him and it touches me greatly when
people recognize the miracle he is and the tremendous spirit he possesses. When he went to church for the first time,
one sweet lady just held his hands and gazed into his eyes for a
long time. I don’t know exactly what she
was thinking, but it touched me that she seemed to be savoring his spirit. The next week, Flint and I were in San
Antonio and we went with my parents to their ward. My mom’s friends have been tremendous
supporters and prayer warriors, and we were only in the chapel for a few
seconds before Flint was surrounded by a circle of women, many of whom were in
tears as they gazed at this sweet little miracle they had all watched from
afar. It was very touching to me! One of my favorite experiences happened a few
weeks ago at stake conference, a church meeting for all the congregations in
our area. Luis Britt, a member of our
church who lives in Amarillo, is the father of an adult son with severe
disabilities. Before stake conference,
I had never really met this man, his wife, or their son, so I don’t know all the
issues their son suffers from. I do know
that their son is almost completely mentally and physically incapacitated and
therefore, totally dependent on his parents.
Somehow, this man had heard about Flint and at previous occasions, he
had asked Brock about Flint’s progress.
As our family arrived at stake conference, Brother Britt saw us and
immediately came over to meet Flint. He
talked to him, touched him, smiled at him, kissed him, cried over him, and told
Flint over and over what a special boy he was.
After the meeting, Brother Britt sought us out again so he could talk
with Flint and just kept saying what a special spirit Flint had. These interactions brought Brock and I to
tears and we were so touched by the love we could feel from him towards our
son. We so appreciated the fact that
someone else recognized the miracle that is our son and the sacrifices he made
to come to earth in this manner. It
taught me a little about how our Heavenly Father must feel when we worship His
son and gratefully acknowledge the sacrifice He made in our behalf. It makes me wonder if I am appropriately
grateful and in awe at the miracle that the atonement is in my life. I know I have a lot to work on!
