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Nicholas'
Journal August 2006
August
29, 2006 Tuesday - (Day +633) Outpatient - (Day 590)
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Nicholas was up and ready to go back to the skate park at 7am this
morning. He was on his scooter, we did letters, all while watching
"The Little Einsteins." He ate breakfast, played Ronald
McDonald games on the computer, and danced to the Wiggles. Whoooo,
what a morning. Please pray for Nicholas and his wonderful health.
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August
28, 2006 Monday - (Day +632) Outpatient - (Day 589)
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Nicholas went to the skate park for the first time today to ride his
scooter. He had a blast. Most of the hills were too big for him, but
there was a few small ones that he really liked. We hung out for a
little while then off to the river we went. Please pray for his IGG
levels to stay high.
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August
26, 2006 Saturday - (Day +630) Outpatient - (Day 587)
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We baked cookies for Nicholas' moms birthday. He loves to "bake
em." He was busted this morning sneaking a bite from the
cookies that we made the night before, lol. He made a care bag and
gave it to his mom when she came to pick him up. Please pray for
Nicholas and his great health.
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August
25, 2006 Friday - (Day +629) Outpatient - (Day 586)
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Nicholas was really rockin out today. He got out his old piano to
play along with the Little Einsteins and was dancing in between. He
had so much fun. We went down to feed the ducks and have Pizza
Fridays. He went swimming and rode his scoter through the day. He
was so busy today. He is growing and getting so big it is
incredible. Please continue to pray for Nicholas and his health.
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August
24, 2006 Thursday - (Day +628) Outpatient - (Day 585)
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Nicholas is in his favorite Spiderman outfit. He loves it so much
that it gets washed everyday. He is doing great on his scooter and
still wants to go swimming all day. Well, we are off to ride his
bike and eat dinner. Please pray for Nicholas and his health.
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August
22, 2006 Tuesday - (Day +626) Outpatient - (Day 583)
WHITE
BLOOD CELLS = 10,900
RED BLOOD HEMATOCRIT = 42,900
PLATELET = 413,000
IGG
= 507
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Nick had a doctors appointment and
a check up today in Spokane Washington.
All of Nicks numbers look great. Platelets and white blood cells
have all come down. This is good. His IGG level is at 507 and the
baseline for the infusion is 400, so we get to go home for another 2
weeks and then re-test after Labor day weekend. He was a real
trooper today after staying an extended time to get the test
results. He took a 2 hour nap on our way home from Spokane and was
ready to go when we got back. He feels great and is also doing
great. Please pray that his body continues to hold on to his IGG and
we continue to get good results in a couple weeks.
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August
21, 2006 Monday - (Day +625) Outpatient - (Day 582)
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QuickTime Videos: Video1
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2
Look at me go!!! I love to ride my scooter!! Nicholas played on
his scooter today and had a lot of fun going down the hills. His
favorite Spiderman scooter did the trick. Next will be a skateboard.
How fun. Please pray that Nicholas doctors appointment goes well and
his iron levels come down and IGG levels stay high.
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August
20, 2006 Sunday - (Day +624) Outpatient - (Day 581)
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Nicholas is soooo lucky. Nicholas' mom and family put together a
camping trip for the weekend.
Nick played with all his cousins and everybody for 2 days. He
has so much fun and just went all day. He learned to ride a scooter
and really has a lot of fun with it. He is very tired from playing
so hard. I picked him up and now we are at my house for a few days.
He has an appointment in Spokane on Tuesday and then back. Please
pray for high IGG numbers and a low iron count.
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August
16, 2006 Wednesday - (Day +620) Outpatient - (Day 577)
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Nicholas is doing much better with his eating. He eats almost
entirely on his own. Since the switch from cream of wheat to oatmeal
he is now liking it much better. He says "its quaker oats, is
berry, berry good for you." It is so cute. We are off to the
pool, then to the river to feed the ducks before mom comes to
pick him up. Please continue to pray for our little Nicholas. He is
doing so good.
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August
15, 2006 Tuesday - (Day +619) Outpatient - (Day 576)
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Here he is...It has been a great day with Nicholas. We went to the
river to feed the ducks and the weather was wonderful. He has so
much fun and he even brought over some bread to feed them because
"they are hungry," he says. He had a full day and out like
a light by 8:45pm. He is awesome. Please continue to pray for our
little Nicholas and his health.
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August
12, 2006 Saturday - (Day +616) Outpatient - (Day 573)
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I picked up Nicholas to spend time
at grandmas for her 80th birthday party. My sister and her kids came
in from the coast and we all had a great time. My Nieces and nephew
have not seen Nicholas since he was about 9 months old. Others have
not seen him since before transplant. He did great and everybody was
very happy to see him, then off to Moms to another barbque. Nicholas
has been very busy all weekend, and is having a great time. Please
pray for his continued health and high IGG levels. |
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August
11, 2006 Friday - (Day +615) Outpatient - (Day 572)
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The morning are cooling off here and we were actually able top wear
sweats. It feels like fall is on its way. I added warm water to
Nicholas' pool and he was in it. It felt like an early morning bath
on the deck. We were off to Moms and he was going to have an
afternoon barbque there. Tomorrow Nicholas will get to go to
grandmas house for her 80th birthday. Wow, 80 years old. Nicholas
was great today and is excited to go to the parties. Please pray for
Nicholas and his health.
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August
10, 2006 Thursday - (Day +614) Outpatient - (Day 571)
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Guess what....We are out riding our bike. It has been a beautiful
day here until the thunder bumpers rolled in. So, off the bike and
in the house we went. He has done great all day and even slept until
almost 8am. He is so awesome. Please pray that his IGG levels remain
high.
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August
9, 2006 Wednesday - (Day +613) Outpatient - (Day 570)
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Here he is swimming more, and more. He went for a dip in the pool
right off the bat this morning, then again this afternoon. He loves
the water. His new teeth have not started to come in yet but it is
close. He had a busy day today and off to bed a little early
tonight. He is really growing up fast. Please pray for the continued
great health of Nicholas.
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August
6, 2006 Sunday - (Day +610) Outpatient - (Day 567)
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Now we are really
tooofffless.
Nicholas woke up this morning and was pulling at
his tooth. A couple minutes later with a little help out it came.
Now the 2 front teeth are gone. Nicholas ate his oatmeal all my
himself and now he is in the pool swimming. He loves the pool. He
has a busy day planned, visit the yellow balloon, feed the hungry
ducks lunch, go to McDonalds, them off to Moms house for Ice Cream
snacks. What a day. Please pray for Nicholas continued health.
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August
5, 2006 Saturday - (Day +609) Outpatient - (Day 566)
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Nicholas woke up this morning and looked
under his pillow to find a half dollar there and no tooth. He was
very excited. He wants to leave it there so the tooth fairy will
come back tonight. I told him she only comes once for every tooth,
but he left the half dollar under his pillow anyway. He is so cute.
We are getting ready to go for a swim so I will update later or
tomorrow. Please pray that his iron levels come down and his IGG
levels stay high.
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August
4, 2006 Friday - (Day +608) Outpatient - (Day 565)
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Nicholas' mom and I have been reading
packages of what Nicholas eats. Come to find out that his maple and
brown sugar cream of wheat that he has every morning for breakfast
and night before bed has 45% iron in it, WOW, so we are going to cut
this out. I have changed to Oatmeal that only has 10% once a day.
So, this will take it from 90% iron to 10% iron just in these 2
meals. It is hard to find anything with less that 10% iron. The
doctor informed us to give Nicholas only 1 pediasure a day. He does
not need it, but he likes the taste and only 3.3 mg of iron. His
Beech Nut chicquita bananas that he has once a day has 4% iron, but
the Gerber bananas and vanilla custard has only 2%, so another
change. He eats this instead of pudding (it is much better for him)
We eat chicken every night for dinner and the chicken has 0% iron,
so this is great. With the changes in his diet I hope that his Iron
levels come way down with the next check up in 3 weeks.
Look, No Tooth
Nicholas came over today and he had lost his tooth, so the tooth
Fairy will come tonight and leave some money under his pillow. His
other top tooth is a little loose also so it will probably come out
soon. He lost the 2 bottom teeth 2 weeks apart in February. He is
wearing his favorite Superman tank top and off to the river we go to
feed the ducks, home to ride his bike and swim. Please pray that
Nicholas stays well and his iron levels come down in a few weeks.
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August
2, 2006 Wednesday - (Day +607) Outpatient - (Day 564)
UPDATE
- from Doctors Appointment:
WHITE
BLOOD CELLS = 12,000
RED BLOOD HEMATOCRIT = 42,000
IGG = 642
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Here he is dancing and singing to his
favorite wiggles. He loves to sing and dance. It should not be as
hot today so our ride to Spokane for blood work and a
scheduled check up should be good. We will be gone all day. Please
pray for a good check up and a very high level of IGG so he does not
need a transfusion.
UPDATE:
Nicks appointment went well and the doctor is happy with the
length of time that he is holding on to the IGG levels. They are a
little concerned with the iron levels in his blood that can be
condusive to many transplants, diet, or his donor having hemochomatosis
(too much iron in blood). The doctors in Salt Lake City (December
2004) the day of transplant mentioned that the donor may have
hemochomatosis, because of the high level of red blood cells in the
bone marrow. The doctors were not sure but this may be the case and
we will not be able to tell right away, but could in the future
after nicks transplant. But if it is the case the cure is
giving blood every 6-8 weeks. His doctors mentioned then that
"he would have gone to needing blood all of his life to giving
blood after transplant, how ironic."
The doctor in Spokane today said if this is not from his diet (
and from the donor) that they have a new pill now that reduces iron
in the blood instead of giving blood to reduce the iron levels. The
doctor only teats iron levels every couple months and we will watch
the test results. So, for now we are going to look into his diet to
see if he is eating something that has too much iron in it, and
other than that we will keep an eye on his iron levels. We go back
for another IGG test in 3 weeks. Please pray that he continues to hold
on to his on to his IGG levels and his iron levels go down.
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August
1, 2006 Tuesday - (Day +606) Outpatient - (Day 563)
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The weather has been a lot nicer are we are
venturing back outside to ride his bike. He cruzes it better
everyday and soon he may try to take off the training wheels. He is
very careful when he rides and really likes it. We have a doctors
appointment tomorrow for a check up so please say a prayer for good
blood work. |
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Nicholas
Ashby Donation Account
US
Bank (714-529-3983)
Or
just walk into any US Bank
Make
a Donation through Paypal:
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If
mailing please send to:
Nicholas
Ashby Donation Account
P.O.
Box 1817
Lewiston,
Idaho 83501 |
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