Kites rise highest against the wind - not with it.
Sir Winston Churchill
As I sit and look at you
I often reflect upon myself and wonder…
How can I be so strong when I am so weak?
How can I be so brave when I am so frightened?
How can I help with such little knowledge?
How can I endure with such little stamina?
And then I realized what I have accomplished, with you…
I have, because I love you…
My love for you makes me strong when I am weak.
My love for you makes me brave when I am frightened.
My love for you gives me the knowledge to help.
My love for you gives me the stamina to endure.
For what the future brings…
I will be strong…
I will be brave…
I will help…
I will endure…
Dylan weighed 8lbs. 10oz. when he was born. He went to the E.R. at 2
weeks for vomiting. We had trouble with diarrhea and vomit when he was
under 1 year old. We tried every formula made at the time. He seemed best
with the soy. The diarrhea was the worst. It was hard to go any where.
At 9 months old I demanded that the doctor find out what was going on. At
18 months he was diagnosed with IL.
Dylan was in the middle, what I mean is that he wasn't bad enough to see
the "right" doctor's and not well enough for the regular doctor to handle.
To cut to the chase, at 5 years old Dylan fell ill. We couldn't stop his vomiting
and he was admitted into the hospital. At this point they he weighed 35 lbs.
and they didn't know how much of that weight was built up fluid. On top of
being ill he was malnourished. This was when he got his first central line.
Dylan's treatment consists of TPN (total parental nutrition) that runs for 8
hours. We also go to clinic every 4 weeks for IVIG (antibody infusion). Dylan
has had reactions to the infusions and this why we go to clinic. Our doctor
said that due to the way he leaks fluids it is not possible to due sub que IG at
home. Dylan also gets Albumin every 2 weeks. I used to give him the
albumin every 5 days. His doctor changed it to every 2 weeks because of his
aluminum level was elevated. Albumin has trace levels of aluminum, I didn't
know that. I also didn't know that they can check the level by a blood test.
Dylan is doing well and is very active. He loves to play with his friends. His
treatments are working well and he is stable. We really can't ask for more
Dylan receives care at UCLA University of California Los Angeles. His doctor
told me that they are is research on a protein that can (hopefully) block the
leaking vessels. We'll see what the future holds. At least we know there is
research being done.
Dylan with his new friend at Turtle Camp.
And Dylan at play.