29 Jan 2004 - The
journey begins
Dear Angela,
Thanks for asking about
Isaac’s appointment. No, we didn't learn anything- Dr. Ham doesn't think we are
going to find anything, but she wants me to take Isaac in and get updated blood
work- ugh. Just in case. The little lows he has had sounded just like what she
would expect to hear from people who have ketotic
fasting hypoglycemia, but the New Year's Day thing was not so good, didn't fit
the pattern well. She doesn't think the blood work will tell us anything we
don't know, and said he is growing great and basically just to hang on and hope
that he is in the majority who outgrow this by age 6 to 8. Uh-huh. Yeah.
Nothing new- his body usually works fine except for occasionally when it
doesn’t, for no apparent reason. No control over it.
No way to prevent or predict it. Sigh.
I also talked to her about Virginia- just checking in about her being so tiny and
asking if there was a possibility that she has an endocrine disorder as well.
She is no longer on the chart for weight, and is only in the 10% for height- a
tiny pixie. She is still wearing 3- 6 and barely wearing 6-9 month clothes, and
she is 5 weeks away from a year old. Dr. Ham didn't think we should jump to
that conclusion, but we are just going to watch her and see. Isaac was 2.5
before we had any idea he had an endocrine problem, she said sometimes you can
tell at birth- it could just be that Virginia is a little person. But we will keep an eye on
her.
I have to take Isaac back in 4
months, and I will have her look at Virginia at that point. I DREAD doing the blood work, we
have to go to the hospital lab and them take enough
for 5 tests. He got freaky while we were there yesterday, about getting on the
scale, height, blood pressure... white coat anxiety, you know. And that was
when they weren't actually doing anything that would hurt him! Blood draws
(especially for that amount of blood) are just not fun. Poor
kid. I kept thinking, oh, what Trish and Aaron went through- I thought
we were going to need a straightjacket just to get Isaac weighed and measured,
I can't imagine what it would be like to try and catheterize him! (Actually
when Isaac was in the hospital, he was catheterized but since he was
unconscious when they originally did it, he didn't fight. Sigh!)
Ah, well. Isaac at least is
growing well, and I really like Dr. Ham. Wish she saw kids as a pediatrician; I
would certainly go to her. She hasn't seen Isaac in a year and she still
remembered us- apparently Isaac made an impression on everyone in the hospital.
Wow. She sees kids all day long- it was great to have that personal touch from
them. Makes the bills I'm still paying on for his hospitalization all worth it!
LOL Well, that and him being mostly fine!
Love,
Delilah
3 June 2004:
Conversation with my sister about Virginia and Dr. Ham
[09:56] yoganane: Oh,
and what did the doc say about the munchkin?
[09:57] delilahdr:
Dr. Ham made an appt for Vi, which is good- that she was willing to take her as a patient- and
bad- that she agreed with me that it's time for some testing.
[09:57] delilahdr: :-(
[09:57] delilahdr:
She is 17 lbs exactly (exactly double birthweight)
and 27.75" at 15 mos tomorrow so it's time to
see if there is anything wrong or if she's just (as her daddy lovingly says) a
"runt".
[09:59] yoganane:
Something to pray over, definitely.
[09:59] delilahdr:
Quite.
[09:59] yoganane: Tell
me what to pray--that she is fine? That whatever it is, is curable? And when is her appointment?
[10:01] delilahdr:
Pray for discernment- that if there is something we need to find, that we find it; for healing, if
there is something that is not right; for God's will for Virginia to be done;
and thanksgiving for the gift of her life and her preciousness; for comfort,
that we can trust that God loves her even more than we do and will abide with
her.
[10:01] delilahdr: And,
the appointment is 21 June.
[10:02] yoganane: They couldn't see you any sooner? You like
this doctor?
[10:04] delilahdr: I
really, really like Isaac's endocrinologist, yes. If she were a pediatrician,
we'd never go anywhere else, but she's a specialist. That is why I was afraid
she might not take Vi… since we don’t know that there
is an endocrine problem.
[10:10] yoganane: Sounds
like there could be. Any kid who eats like that should be bigger, it seems. But
God definitely had a purpose for bringing her here, seeing as her conception
and pregnancy were a miracle, so he will not let anything happen to her, I
don't think.
[10:14] delilahdr: I
believe God holds Virginia in the palm of His hand- all of us, but her especially-
she is here especially at His pleasure. If I lost her tomorrow (God forbid) her
life would have still changed me for the better, forever... and not only my
life, but others’... He will protect her, one way or another, this life or the
next. But it is my job to be a wise steward of the gift of her as her mother,
so I am going to do the tests. I pray if something is the problem, there will
be an answer as to what to do. Otherwise, we will just pray and trust God to
provide that answer.
7 June 2004 Letter to my
mother-in-law about
beginning testing on Virginia
Dear Barbara,
Isaac’s follow-up appointment
for his fasting ketotic hypoglycemia went great and
he is doing fine. Virginia is still really small for her age, so Isaac's
endocrinologist is going to order some tests for her; she has an appointment in
two weeks. Then they will schedule the tests. Probably she is fine, since she
is so healthy- almost never gets sick, but Dr. Ham has been very wonderful for
Isaac ever since he was in the hospital, and if she thinks that it's time to
run some tests to make sure Virginia is just petite and rule out other possible
reasons for her being tiny, then I am on board. For these tests, we will be
seeing Dr. Melissa Ham at Children's, with whom we already had a relationship,
because when Isaac crashed really badly in August 2002, and was hospitalized
for 3 days- she is who he saw then, and thus, still
sees for his follow-up visits. Therefore, she is whom we asked when we started
wondering about Virginia, and were grateful that
she "created" an appointment for Virginia even though the next available "new patient
appt" was not until November. We REALLY like and trust Dr. Ham and have
had great experiences with her in terms of listening to our questions, (all
1000+ of them) and not being dismissive of our concerns, etc. although obviously
the experience of one’s child having a strange and seemingly random but
occasionally life-threatening disorder is not a great one. Dr. Ham has great
bedside manner, shall we say, in addition to being very competent.
So, keep Virginia in your prayers that everything is fine, or that
if something is wrong, it is something easily treated, and I will keep you
posted. The first round of testing will just include blood work and x-rays.
Delilah
21 June 2004 - Update to my Bible Study group on testing process
We spent ~4 hours at Children's on Monday morning,
including 2 parking garages, 3 care providers, 4 x-rays, 4 vials of blood
drawn, 6 waiting rooms, and one very distraught baby and one very tired mommy.
But it's over and now we wait for results. Hopefully we will hear the results
of the tests next week, and know if we have to do more testing or if one of the
tests she did already revealed what is going on. Thanks for the prayer cover-
it could have been much worse, and we are grateful to have access to excellent
medical care when it is required. Delilah