Today has been a truly amazing day. We sold lots of bracelets and have several people in other states who want us to ship them some!
My fantastic friends Heather and Leah are helping me plan a Scrapbook Crop to raise money. The date for that is June 22-23.
Another incredible friend, Susan, helped secure us a venue and a date for our benefit variety show. May 26 at the ACU Recital Hall.
And we had one very nice donation.
What a fabulous support network we have!
Love to all
Am
Wednesday, March 28, 2012
Last night was a good example of why we need a Diabetic Alert Dog. MH had 6 lows between 4pm and 2 am. When I finally got her up to 139 at midnight and felt comfortable going to sleep, Ethan started going low (90 at midnight and 72 at 2am). Needless to say we are very tired this morning. We are looking forward to having a DAD to help keep a nose on our kiddos.
We are having a mini fundraiser by selling these bracelets.
They are $2 apeice and say "Until there's a cure, there's a dog."
Selling these will be another step toward paying for our dog.
We are having a mini fundraiser by selling these bracelets.
They are $2 apeice and say "Until there's a cure, there's a dog."
Selling these will be another step toward paying for our dog.
Friday, March 23, 2012
MH’s Story
We had been trucking along for about 4 years with T1D a
constant presence in our home. Ethan was doing pretty well, although every day
is a challenge with him. Once in a while we checked the girl’s blood sugars for
our own peace of mind, but also so they would have some inkling of what Ethan
did daily. In February of 2009, when MH was 7, our lives turned over again.
MH had been moody and grumpy and complaining of a headache
for several days. She is usually outgoing and bubbly and involved in
everything. On Monday, she and I were in a family martial arts class during her
first really bad moment. I was in with the adults and she was in with the kids.
One of the instructors came and got me out of my class because she was sick.
She was shaking and crying, and complaining that her head hurt and that she was
sick at her stomach. I asked her if she wanted to home, and she said that since
class was almost over, I should go ahead and finish my class. One of the other
moms was waiting for class to get out so she offered to sit with MH until my
class was done. So I gave MH some Tylenol and some water and went back to class
for the last 15 minutes or so. After class, the other mom said that MH had
almost gone to sleep but never really stopped crying. I did get pretty worried
at that point because it is not like her to keep on crying. So I asked her if
she needed to go to the walk-in clinic. She said “maybe.” As it happened, the
clinic was closed so we went home. She took her shower, drank more water, and
then went right to bed. I was worried because when she gets strep, she goes
down really hard. I thought that was maybe the problem, but she didn’t have any
fever. The next morning, Tuesday, she was feeling better and wanted to go to school. So I gave her another Tylenol
and sent her. After lunch, she called feeling really bad so Jeff picked her up
and took her home. When he got home he called me at work to tell me what was
going on with her. I asked him to check her blood sugar to put my mind at ease.
Jeff checked himself and all three kids to make it more like our normal
periodic checks. Jeff was 104 (normal adult BG is 80-120). Nana's was 119.
Ethan was running pretty high at 440, but Jeff gave him some insulin from his
pump and he was good to go... then he checked Mary Hannah. Her blood glucose
was 494! Jeff’s
initial reaction was the desire for denial. Mine too. He called me at work and
I headed home so we could make a decision about what to do (call the
pediatrician, the endo, or go on to the ER). We decided to go on to the ER to
make sure we weren’t headed into DKA.
Thankfully, she was not in DKA. She did have some ketones, but all the
other blood work looked ok. Then we had to tell her.
MH and Lucky Bear. Lucky got a shot and a bandaid too.
Of course, having grown up with Ethan’s T1, she knew a lot
about it. We and the doctor told her that she had diabetes like Ethan. She took
it really well. First, she asked the
doctor “Are you sure? Do you need to run any more tests?” He assured her that
there was nothing else that would make her BG so high. Her next question came
along with the expected anger and tears “Why me? Ethan already has it. Why
should 2 kids in one family have it?” My heart melted a bit then when I had to
say “I don’t know baby. You are right. It’s not fair.” We had some discussion
and some hugs and tears, but she rallied us all with her next big question: “So,
when do I get my pump? And can I get the cordless kind?” Wow. What a kid.
She was not admitted to the hospital that night (nor has she
ever been). The ER docs, who knew us, felt like we could take better care of
her at home. We had the supplies we needed and the know how. We didn’t know how
much insulin a seven year old would need, so we decided on giving her the same
amount as Ethan, knowing it would not be enough, but would be better than
nothing.
Wednesday, we called the Endo in OKC and headed up to
Oklahoma for a visit we had hoped never to make. MH was a real trooper through several days worth of ordeal.
She got right on board with checking her own sugar and even giving her own
shots. I am so proud of her. Naturally we had rants, long talks, and tears on
the long drive, but overall it was pretty smooth.
Now for a truly amazing part of the story: MH wanted to go
back to school on Thursday! She did want us to come and talk to her class about
Diabetes with her. So we had an amazing discussion with her class. They asked
really well thought out and sensible questions. When we were done talking,
three or four of the girls, jumped up, embraced MH and told her that they would
always love her and stand beside her through everything. Those are some amazing
friends. They have all held true to their word. MH’s best friend, E, also
learned how to count carbs, give shots, and operate MHs insulin pump. I
honestly couldn’t have wished for a better friendship for my girl.
Ethan’s Diagnosis Story
Ethan was diagnosed at 18 months old. The week leading up to
his diagnosis was spent hauling him back and forth to the doctor. I was 29
weeks pregnant with our third child and was completely exhausted. Ethan hadn’t
been sleeping more than an hour or two at a time. Mostly he would only sleep if
I sat in the rocking chair and held him. I believe we actually saw the doctor
three times and went to the lab twice. He did have strep and some kind of viral
infection. The last time (EVER) that we went to the lab was on Thursday
afternoon. We didn’t hear anything new on Friday, so we kept on treating
Ethan’s symptoms which at this point included a low grade fever, runny nose,
sore throat, extreme thirst, overwhelming urination, and vomiting. He also had
quit saying anything except “water,” “bed,” and “momma,” he lost the ability to
walk or even stand, and he quit drinking from a cup. On Saturday, December 18,
my parents came to celebrate Christmas with us early since they were going to
California after Christmas and I was not stable enough for travel. Ethan perked
up a bit on Saturday when we opened presents. He actually tried to make a
basket in his new basketball goal and ate a little chicken.
Sunday was going to be a very busy day. We had church, then
a Christmas open house at our house after lunch. Ethan was REALLY sick, so mom
stayed home with him while we all went on to church. Before church, we talked
to a friend who was an ER doctor and asked him to come by and see Ethan after
worship. He came in, took one look at Ethan, who by this time was turning blue
on his hands, feet and face, threw him in the car and took him to the hospital.
Husband Jeff went along with him. I stayed home because of the open house and
tried to get everything ready without worrying. A little while later a neighbor
stopped in. Jeff called her from the hospital to come and get me. He had called
me, but I was vacuuming and didn’t hear the phone. She told me that they were
admitting him and that I needed to get down to the hospital ASAP. So leaving MH
with Nana and Poppa, I hurried over to the ER. When I got there, Dr. Jeff (our
friend) told me that Ethan had Type 1 Diabetes and that the LifeFlight
helicopter was on the way to pick him up and take him to OU Children’s Medical
center in Oklahoma City. We stayed at the ER until the flight crew took him. We
went home and packed an overnight bag, (really just overnight) and drove almost
2 hours to the hospital. On the way I made a few calls to friends and
relatives. I had to get a sitter for MH (3 years old). Nana and Poppa waited
for the sitter, handled the open house, then drove to the Hospital also. When
we got to the PICU we found Ethan completely unconscious, unresponsive, with an
oxygen mask, lots of heart leads, a blood pressure cuff and a couple of IVs. We
still really had no clue what we were in for. Our doctor came in and told us a
very little bit about T1. Ethan was in Diabetic Ketoacidosis, he wasn’t getting
enough oxygen, and his BG was 697. The doctor said he thought we had caught it
in time, but he wasn’t sure.
Overnight we stood by his bed, held his tiny little hands
and cried. We could not believe that we had let him get so sick. Finally, one
of the nurses was able to find me a rocking chair to sit in, but it was not
much better than standing. (Remember, 30 weeks pregnant now). During the night,
one of my “chosen sisters” came with a ‘rescue’ bag of food, crossword puzzle
books, pencils, etc. But mostly, she dropped everything, cancelled her clients
for 2 days, and came to be with us. (T – you are the sister of my heart). We
stayed in the ICU for almost 3 days. (Remember that overnight bag I had? I was
really reeking by this point). Toward the end of the second day, Ethan started
to wake up. Dr. C was excited, but warned us that due to many complications,
Ethan might have brain damage. However, not long after that Ethan started
pulling at his IVs and opened his eyes. He looked around and said “Momma? Da
da? I go outside.” You would not believe how loud all the nurses cheered when
he spoke! It was such a relief.
We were sent home on Christmas Eve. I got the best Christmas
gift EVER. My son was alive and was going to be ok.
P. S. Remember that
lab in the 1st paragraph? They had decided that their results from
Ethan’s blood work were ‘anomalous’ and so they sent them to another lab in
another city late Friday for a recheck. They didn’t call us, they didn’t call
the doctor who had specifically ordered a glucose test and a full blood panel
to check for diabetes. In short they screwed us royally. They actually never
called the doctor. They sent over a report that was improperly filed with some
other lab reports. Our doctor didn’t even find it until after we called her
Monday morning to tell her we were at Children’s. Hmm. I never paid that lab
either. Nor do I ever intend to.
Thursday, March 22, 2012
D.A.D.s for Kids
We have decided to make a change in our lives. With two T1 diabetics
in the house, we have to be always on our toes (and their fingertips). Like many
other T1 families, we spend many hours worrying, and lose many hours of sleep
over T1. So for a little peace of mind and hopefully less worry, we have
decided to get a Diabetic Alert Dog (DAD). We have a friend in town who got her
DAD in February and has found it to be a wonderful experience.
This is Perseus, our friend's DAD.
We are going to be getting our dog from Warren Retrievers /
Guardian Angel Service Dogs. DADs are able to smell the changes in blood sugar
and can alert a diabetic to a high or low even before it registers on the
glucometer. As MH and EJ’s sugars are all over the place, I’m sure that
whatever dog we get will be working hard all the time. For more info on DADs,
visit
To donate to our DAD please contact us or Warren Retrievers.
I am going to try to keep updates here about fundraising and
where we are in the process. Also follow us on facebook D.A.D.s for Kids.
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