sunday, December 23, 2007
Nicky graduated this past school year and graduated
Elementary School in the honor roll as usual.... however,
middle school provided a challenge for us. It was a hard transition for
Nicky, and I knew things would be rough, but I never expected the school
system to treat him like a leper. Nicky was discriminate against and the
school never tried to adapt to Nicky's needs, their answer to everything
was to just send him home. They had no interest in 'dealing with it', no
matter what 'it' was. He was sent home or they tried to send him home
(and they could not get in touch with us) at least once a week (or more)
since the school year started. This, plus the fact that he missed school
due to two bouts of corneal abrasions and he missed the first two weeks
of school because we were in Italy, my honor roll student is all of a
sudden getting Fs? If this does not speak mounds of the lack of care at
this school for this child, I don't know what does. In the meantime...
Nicky will be homeschooled by
yours truly for the last two weeks of the semester, and come the new year
he will be put on the 'Home Hospital Program' where a teacher will come by
our house once a day for one hour, 5 days a week to teach Nicky
what he needs to know, and I will pick up the slack for the
rest and help him out. He will most likely spend the rest of his
6th grade on this program. What we will do after that will depend
on Nicky. While I would like him to have some interaction with
other kids and other adults, I am also not going to let him be
treated like this... We'll see.
Nicky's attitude has changed greatly since he's been
home-he was sad at first, but once he realized that he could 'sleep in'
and we could go back to our regular bandage change routine (a bath every
third day) his spirits lifted and he's like... a whole new kid. I cannot
truly explain how much happier he looks. We'll take it one day at a time
for sure...
Aside his school stuff, tons of other things are going on...
too much... my head is spinning. We have an appointment with the dentist the day
after xmas and we're not looking forward to it at all. Of course,
being Xmas, things are hectic already. Nicky is now wearing underwear during
the day so we have his bowel problem under control. Wound-wise is better lately.
I've padded him to death so he could not scratch and it worked!!!
Weee!
mommy @ 10:28 AM
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tuesday, May 1, 2007
Nicky is doing real well at school as usual.... however, it's becoming a real challenge
to get him to do his homework. He can sit there for 3 hours just
to write 3 paragraphs. Not because he can't do it, because he does not like to
do it. I tried to have long talks with him, telling him how important
it is, how we all have to do things we don't like, but it's
falling on deaf years. Oh well, 6 more weeks and then school is
over, he'll graduate from Elementary School and I will sit there being
amazed! Who knew that little timid kid that started kindergarten would become this amazing
student? Hats off to Nicky.
Aside his school stuff, tons of other
things are going on... too much... my head is spinning. We have an
appointment with the pediatrician tomorrow and I have a LOOONG list of
things for her... she's going to hate me. For one, once again I will ask
for him to be seen by the dentists at Children's Hospital, I told them
before how I know the insurance will not pay for it, to just charge us,
instead they put it through the insurance and 3 months later we get the
denial... nobody listens to me. I also had asked for hand surgery and
nobody ever called me back. His bowel impaction problem now is a serious
issue and I will demand something to be done, if it's surgery, so be it.
We tried the strongest medicine and it didn't work. I don't know what
else to do to fix this problem. This is actually supposed to be a 'camp'
appointment, so, yuppie, blood work and the rest, Nicky will hate it. I
will also ask her why Children's Hospital is not calling me back
regarding his blood transfusions and I will need to remember to ask her
to tell the supplier that I need more, different products. It's never
ending!!!
Wound-wise is just strange lately.
His wrists seem to be the worse spot, along with his knees. We can get
everything pretty much healed but those areas. I wish we could air-dry
them, but it's just too painful for him to expose these sort of wounds
to air. Here's hoping things will improve a bit!!!
mommy @ 10:13 AM
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saturday, February 10th,
2007
Nicky had a great
Halloween-he was SpongeBob! It was hilarious. He then had also a great
birthday (will try to get some pictures on the website soon-I am so
behind and I completely forgot... sorry!). Christmas rolled around and
then New Years, one of the first New Years he was actually awake, lol.
He was off school for three weeks!
In January we went to
Florida for the EBAN's fundraiser (click
here to see pics!) and Nicky was thrilled because he got to
spend sometime with his EB friends Jonathan, Samantha and Hunter. Nicky
even made the news! Too funny. Nicky was also the featured child on the
"Make A Child Smile" website for January and... Holy
Cow... here's an excerpt from my Blog on MYSPACE:
>> Well, Nicky was the
'featured' child on the MAC's website for January (he is still lingering
about the website for at least another two months and then most likely a
lot longer at this URL: http://www.makeachildsmile.org/2007/prev_2007_jan1.shtml)
and I just have to say... WOW!!! Holy Cow. I never got so much mail in
my life. Since is now February I thought he would no longer get mail,
but lo and behold I went to check today after I haven't done so in a
week and there were at least 50 cards, 5 thick envelopes, 10 or so
manila envelopes and three packages! All in all so far he probably
received at least 600 cards/letters and a miriad of gifts, from stickers
galore, to cars, DVDs, gift cards to McDonalds & Target, hand-made
collectible cards and some store-bought, a puzzle, a big bear, little
bears, a couple of PEZ dispensers, a bottle full of candy, tons of
little bitty toys, like those pills that in water turn into something
else... actually, to be honest, we haven't even opened it all. Who knows
what's in there! Nicky even got a trooper kit (a patch with a little car
and other things) from the Illinois State Police!! In one of the boxes
one amazing human being even sent me a hand-made matching pair of
earrings and necklace with beads from czechoslovakia for me!! How
amazing is this? We want to wait now until Connor is SLEEPING one
afternoon-hopefully before the end of the week if possible-so we can get
through everything and figure out who we need to send thank you cards to
and organize it all. I was surprised that many classrooms had the kids
write a note to Nicky and then they were all sent together in a big
manila envelope-some of these kids were little and they sent drawings,
some of the bigger kids used glitter markers, some printed pictures of
Mario and SpongeBob and Full House and they wrote notes, made little
collectible cards and more. I am just amazed. I will now get on
the bandwagon myself and start writing these kids that are featured and
send them something to make them smile<<
Coming up... Nicky has
decided he wants hand surgery done on 'four fingers'. Both index and
middle fingers on both hands basically, nothing more. He's having
difficulties playing his video games. Now the problem is getting a
decent Doctor to do the procedure, since I know of only one that does
them routinely (who has done Nicky's hand in the past) but the Insurance
will surely not pay for it since she's up at Stanford. Nice, huh? So, I
am forced to put my son through yet another learning routine for some
doctor that does not have clue one about EB. Beautiful. Looking forward
to that... NOT!
We're still waiting on the
mouth thing. I want at least a decent mouth cleaning-will need to call
CHLA once again and see if they can schedule him, nobody ever calls me
back, I swear. Ugh. We're doing a Bowel cleaning this weekend, finally
got he prescription for it, it took long enough! If it does not work
we'll try again next weekend since he's got 2 3-day weekends in a row.
Wish us luck!
Other than that...
everything is fine. He's doing well at school as usual, we're using the
Miracle Mist regularly on his wounds and a specific cream that is
healing his wounds, we're doing it one wound at a time to see if we see
a difference, plus it's strong stuff and I don't want to mess him up.
We're also trying a different kind of nutritional supplements and I do
see a difference, we may be part of a clinical trial for the stuff, but
everything is up in the air as far as that goes, so I have no clue.
Did everyone hear about
the clinical trial for Junctional in Europe starting this coming fall? I
will be keeping a close eye on that one. I also heard of the progress at
Stanford for a cure but at this point we're not told exactly what to
expect. The cure works on mice though, so, whatever, LOL. Nice to have
some hope! My job is to make sure Nicky lives to see a cure! We need
prayers.
mommy @ 9:53 AM
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friday, October
13th, 2006
Nicky started Fifth grade
in mid-august. Wow, I can't believe my baby is already in his last year
of elementary. He's doing well too-at the last parent/teacher conference
a couple of weeks ago, his teacher told me he's getting all As, plus,
not only she really loves him, his new aide likes him a lot, and all the
kids are very helpful and spend time with him. I just wish his EB was
doing as well. A couple of times a year, usually once in the Spring and
once in the Fall, his allergies flare up and he throws up a lot more
than usual. This past week he has thrown up blood a lot. Why blood?
Because his throat's skin is so fragile, like the rest of the skin, that
it brakes very easily, and just the action of throwing up, plus the
adverse affects of his stomach acids, are enough to damage his esophagus
enough for him to throw up blood along with the excess phlegm he has
collected that needs to 'go'.
He's a trooper and he goes
to school anyway, mostly because he knows there is nothing we can do to
stop it and he rarely throws up at school, he only usually gets the urge
after he wakes up after a nap or in the morning-the phlegm builds up
while he sleeps and then it all must come out somehow...
The other concern right
now is his mouth. We are waiting for the dentist at the Children's
Hospital to give us the get go and he'll schedule him for a
cleaning-although I imagine they will have to put him under? I am not
sure, but I am scared. His mouth really needs a cleaning though, there
is no going around it. He can barely wash his teeth and the build up on
his teeth is something I have never seen before. Skin has even grown
OVER his baby teeth in the back of his mouth-it's insane.
Other than that, he plays
(and fights) with his little brother, he chats on the computer with his
daddy and does all his normal things he usually does. On his next break
we'll have to give him a strong medicine to clean up his BM area which
is impacted... never a dull moment!
mommy @ 3:22 PM
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sunday, July 9th, 2006
Nicky is hanging in there
and truly is a happy child without a doubt. Wound-wise he's got the
usual wounds that either take forever to heal like his ankles or knees,
but the ones that worry me the most are the ones on his forearms.
Interestingly enough his elbows are usually pretty good, it's the area
between the elbow and the wrist that is really bad, and it has been bad
for a long time now. We're trying different strategies and products but
they don't seem to have made any difference-we'll keep trying.
The great thing about
Nicky now is that I can tell he's maturing. Even only 6 months ago, if a
wound was bad and weeping and I wanted to change just that wound
(knowing his bath was the next day) Nicky would throw a fit. It's
different now. We discuss it and change it. He even decided yesterday to
change more bandages around a particularly nasty wound that I wanted to
initially and I was sooo proud of him! It's really hard with these kids
to try to do what is right, and I am relieved that Nicky is at that age
now where he understands the need of bandages being changed. Alleluja! I
love him so much!
Another thing that made me
very proud of him recently is his disposition. I showed him the picture
of another child with EB that was younger than him but that could no
longer walk and I told him the less he does, the less he'll be able to
do in the long run, while the more he does and the more active he can
be, then he'll more likely be able to move more and walk and be mobile.
He agreed, so I told him he could no longer call me for things he could
do himself. If he's sitting on the couch and cannot reach the remote
control on the other side of the couch, that he had to go get it himself
instead of calling me. Same for turning on or off the TV or his fan. He
just had to do those things himself. He's been a real trooper and has
done these things, but yesterday he surprised me: he got his own milk
out of the fridge! That was no small deal. For one, he had to open the
fridge (a feat in itself). Then he had to pull up a chair to the fridge,
climb on the chair with his knees, get the milk jug from the top shelf,
get the milk down, pour it into his cup and then put everything back. I
was AMAZED! It took him a while but he DID IT!! GO NICKY GO!!
As per school, he just
finished 4th grade with HONORS! He will start 5th grade on August 15th.
Even though we are moving, he will stay in the same school for various
reasons. When he starts 6th grade next year he will start it in a new
Middle School which is right across the street from our house!
Sweet.
Nicky enjoyed Camp Wonder
this year once again! Lots of great stuff happened this year and he
loved spending time with his friends. There is as always so much going
on at camp every single day for the kids to enjoy! From horse-back
riding, to trips to the lake, pirate/casino night, carnival night, the
campfires, the smores, and of course, the air-hockey! Nicky had a blast!
mommy @ 9:57 AM
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monday, April
17th, 2006
Things are improving for
Nicky lately and I couldn't be happier. We took him to UCLA in February
and the Doctor prescribed a steroid cream to heal that persistent wound
that had me worried. The Doctor had stated that the wound was actually
healed and it was replaced by healthy tissue, but the body had simply
forgotten how to regrow skin on it. After only a couple of weeks of use
of that cream the wound was completely healed (skin regrew on it) and I
couldn't believe it. I tried using the cream on some of his other
persistent wounds he's had for a while, such as those on those poor
knees that haven't healed in years, but Nicky tells me that it hurts, so
we're only going to use it on small wounds here and there. I was
recently told of a new product called Egyptian Magic so I am looking for
that right now hoping it will help heal these wounds that do not want to
heal in other places. we'll see.
The great Doctors at LACH
have been keeping his anemia in check and his numbers have improved
greatly. The next blood/iron transfusion will be in late May. His last
one was in February. He loves his power chair, although it had
been out of commission from early December until recently. His dad's
friend eventually fixed it, since nobody wanted to or could. Looong
story, I wrote it all in my blog... if anyone is interested... click here. The Medical Community can be so inept! It never ceases to amaze
me.
Aside all of this,
Nicky is doing basically the same. He sleeps good, he loves his little
brother, he chats with daddy, loves school and everything is normal as
far as that goes. We're still waiting for the Hydrotherapy we were told
we were approved for, we'll see. Next week we'll be going to Arizona to
visit his dad and also to visit his uncle, my sister's husband, who will
be in Phoenix for work from Italy. We're all pretty excited about it. My
cousin that lives in Phoenix called me and he can't wait to see us and
have our boys play together. It's going to be a lot of fun! My cousin
and my BIL haven't seen Nicky in several years so it ought to be
interesting.
mommy @ 10:07 AM
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wednesday,
February 15th, 2006
I wish I could say things
have improved, but they haven't. We're still waiting on the power chair.
Nicky's power chair broke down in early December and since the place
where we originally purchased it from through our insurance no longer
takes our insurance, the referral dept at our pediatrician's office had
a hell of a time finding someone else that would fix it. The first
company came to pick it up to fix it (and they claimed they fixed this
brand), and when, 10 days later, nobody called me (as usual, nobody ever
calls me!!) I called them and asked if they fixed the chair or what was
up with it. The lady was so rude. She told me that I "forgot"
to give them the charger and they needed it. I lost it. Not only I told
them they could have called me the next day, and not wait for ME to call
THEM to give me this information, but they DID NOT NEED the charger to
check and see what was wrong with the power chair!!! The next day some
technician called me back and told me they did not fix this type of
chair and that they would bring it back in a few days. We then had to
wait a MONTH for the referral dept to find someone else! This time they
tried to contact the manufacturer for parts, they waited a week and then
realized the manufacturer went out of business and finally a week later
(in late January) they told me they would contact the Medical Group to
deem the chair unfixable since they cannot get new parts and that they
needed to get a new chair for Nicky. That was 2 weeks ago, and I am
STILL waiting for anyone to call me back, and I left 3 messages!!! Does
anyone give a crap that my son is going to school with a wheelchair that
is so small I cannot fully put his seatbelt on like I am supposed to?
Obviously not.
The wound on Nicky's
armpit looks a tiny bit better since I changed the dressing to ADAPTIC.
As a matter of fact I am really impressed with Adaptic, I will be using
it on Nicky much more often. We finally did get the approval to see a
dermatologist that knows about EB (it's a miracle-but it was only after
I told the pediatrician that if the wound was cancerous Nicky could die,
I find it horrible that nobody gives a crap unless cancer and death are
mentioned in the same sentence, but, I digress), now I just have to find
a decent phone number to make an appointment, since all the numbers they
gave me were disconnected! Can something else go wrong? Probably.
Aside all of this drama,
Nicky is doing basically the same. He sleeps good, he loves his little
brother, he chats with daddy, loves school and everything is normal as
far as that goes. He had an iron transfusion in January and will have
another one next week. He was also approved for Hydrotherapy after the
Doctor pleaded his case with the insurance company (another miracle!) so
I am waiting for them to call me (ha!) to make an appointment. I think
it will be wonderful for Nicky if we're actually able to go!!
mommy @ 10:13 AM
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wednesday,
December
28th,
2005
I can't believe that I
haven't written in Nicky's journal for so long... time gets away from me
and Nicky's little brother does not let me do much, he climbs all over
me and barely lets me do anything on the computer... oh well. Here's
what I wrote about Nicky on our Christmas Letter:
"Nicky turned 9 years old in late November. I am sad to say that his condition is not at all improving, if anything he's getting worse and worse all the time. While when he was his brother's age (2) he was just a typical kid, just a little more cautious with a few wounds, now he cannot be even remotely compared to his peers. For one, he can only walk a few steps at a time, his feet are badly injured most of the time and I even end up needing to carry him around the house at times... not a slight feat since he weighs over 60lb. He's still in diapers since he has no control over his BM, and EB wise he has many wounds that haven't healed in a very long time. One in particular is of major concern, it's not that big (the size of a quarter) but it bleeds badly every time we change his gauze and sometime it looks raised, sometimes concave, no matter what product we use (and we tried them all!) it wants nothing to do with healing. Since skin cancer is a major concern with his condition, I will be looking for a dermatologist in the new year-one that actually knows about EB. That will be a feat in itself, and getting the insurance to approve it, will be yet another feat. In the new year Nicky will need major blood/iron transfusions as well, something we are not particularly looking forward to. Aside all his health problems, Nicky is for the most part a very happy child-he loves his little brother and loves playing his videogames (anything with 'Mario' in the title will do!) and loves to watch the TV channel called 'Boomerang', where they show old cartoons such as the
Flintstones, the Pink Panther, Popeye, Scooby-Doo and much more. Nicky also loves watching game shows! In the school front, he's doing quite well. In the last two trimesters of 3rd grade he got straight As, and the 1st trimester of Fourth grade (the grade he's in at the moment) he had 'almost' straight As, he had one or two Bs (I can't remember)."
I am not sure I can add anything else to this at this point... will try
to keep updated on his journal more often!
mommy @ 11:01 AM
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thursday, July
28th,
2005
Nicky's home for the
summer and he's soooo bored! We did have quite a busy month between late
May and late June, but now he can't wait to go back to school. In late
May we went to visit his dad in Arizona and he played with him the
entire long Memorial Day weekend while mommy and Connor hit the Mall and
IKEA among visiting many friends. In mid-June we went to Dante's High
School's Graduation (Dante is Nicky's step-sister's brother) and he
enjoyed it even if he was a little bored during the ceremony. Dante and
Skylar's grandma lives in a small farm so she took all kinds of animals
in for Nicky to see... a little pig, chicken, etc.
In late June we went to Nicky's favorite place: Camp Wonder! Camp Wonder
is a Camp for children with skin diseases and Nicky loved to be able to
spend time with his other 'EB' friends, especially Garrett! He had a
blast. Once we returned Nicky's dad came to visit and brought Nicky a
little video camera for his computer so now they are chatting with the
video camera and microphone daily. Nicky loves it! He also loves
Incredimail so I am sending him all kinds of kid's letters. We went to
the Sequoia National Monument last week and he enjoyed it immensely!
mommy @ 9:32 AM
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sunday, May 1st,
2005
Nicky's doing well
nowadays for the most part. He has about the same wounds as always,
nothing more, nothing less. He seems to have still some energy left from
all those transfusions, but we did get his blood checked last week and
we're waiting for the results.
Less than a month and then he's done with 3rd grade! Seems impossible.
His teacher has told me he will most likely have all As in his final
report card, and, well, I couldn't be more proud. My little smarty
pants, LOL.
He's excited right now because his daddy will come and visit for a few days
next weekend, so he's looking forward to that. We're also planning a
trip to Arizona in early June to visit his dad and also for his mommy to
visit family and friends. June will be a busy month because we're also
be traveling to Las Vegas to attend Nicky's step-brothers' graduation
from High School and then it's CAMP TIME! 4th grade won't start until
mid August and there will no longer be a 'track' per se, he'll go to
school straight until the following June except for time off for Xmas
and Spring Break.
Other than that he was excited
the other day when his little brother Connor spontaneously gave him a
hug and rested his little head on his shoulder once again, he was just so happy to
feel so loved by the little one...
mommy @ 10:58 AM
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wednesday,
february 2, 2005
Well... today Nicky's
having one of those days where he can't open his eyes... sigh. I hope he
gets better by tomorrow, I just can't stand seeing him on the couch,
just lying there all day with a blanket over his head because light
hurts him... at least he gets a lot of rest, and his body needs that, I
guess, always looking for that silver lining...
Health wise he is doing okay for the
most part. As of Monday he's home from school for a month, he is, as
they say, 'off track' until February 28th. On January 28th Nicky
received an honor! He got into the Super Intendent's Honor Roll! This
means he is getting straight As in school and we could not be prouder of
him!!
He's excited because his daddy will come and visit for a few days on
February 10th so he's looking forward to that. On February 24 or 25th he
has another appointment at Children's Hospital in LA to check his iron
levels in his blood. His last iron transfusion was in mid November so
he's probably due for one at this point. Other than that he was excited
the other day when his little brother Connor spontaneously gave him a
hug and rested his little head on his shoulder, he was just so happy to
feel so loved by the little one... on my part, I try to find time to
play with Nicky every day. We enjoy playing either Mario Party 6
together or Mario Kart, depending on how much time I have to dedicate to
play! One game of Mario Party 6 can last up to 2 hours, while one race
on Mario Kart is usually only 15 minutes!! Thank goodness I like playing
videogames, otherwise we would have to get a board game out or
something!! LOL. I enjoy playing with him and we look forward to it
every day!
mommy @ 9:26 AM
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wednesday, january
5, 2005
Nicky's doing okay for the
most part health wise. Not really any better nor any worse. He had one
week in december where he had very few wounds, but now, sigh, he's back
to 'normal' so to speak.
He had a really great Xmas... tons and tons of presents were under the
tree! He was so funny... he kept looking at each present to see who it
was for and he kept saying 'there is another one for me'... and 'here's
another one for me'.. mommy, most of them are for me!! LOL.. he really
cleaned out, and we were happy that not only we were able for him to
have a nice Xmas, but that so many relatives thought of him and sent him
things as well, such as his grandparents, aunts etcetera.
He's now back in school and loves it. As much as he likes to just stay
home and play videogames all day long, he likes the interaction with the
other kids more than he realizes!! He's doing pretty well with grades
too, such a bonus!
mommy @ 9:59 AM
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monday, december
13, 2004
Nicky had a great
birthday. His daddy was here and we had a good party. His birthday page
will be up most likely sometime later this month or in early January! We
are waiting to get some pictures developed and with the holidays and
all, getting things done is quite the job!
Lately Nicky seems to be doing quite well skinwise. I am not sure if it
has to do with the iron transfusions or just the fact that he's a
happier kid in general (he enjoys his little brother sooo much!!) or
just because it's winter (he normally fares better and itches less in
the winter time), but he hasn't had these few wounds in YEARS. He has a
few that are dime-sized here and there, such as on his wrists, ankle,
armpit and lower legs, but, again, they are small and basically will be
gone soon. The only two sores that are rather large (the size of the
palm of my hand) are on his knees, and even those look much smaller than
usual. To say that we are thrilled that he's doing so well it's an
understatement. It makes me, as his mom, feel blessed and hopeful that
he might very well live a long time and be here when the cure comes
around... things a mommy hopes for!!
mommy @ 3:35 PM
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thursday, november
18, 2004
Nicky had a great
Halloween-he dressed up like Shrek and had a good time going from house
to house with his power chair for the first time. We weren't out for
that long but it was still fun. This was the first time that I actually
took him treak-or-treat, the past times either his dad took him or his
step-sister Skylar.
Nicky had quite a few iron transfusions lately. He had 5 since early
October plus an actual blood transfusion in late September. He has
another iron tx on the 29th and then we'll see how he does. His
Hemoglobin levels were 7 which were almost borderline before we started
(I guess 6 or below is critical) and at the last labs a few weeks ago
his levels were up to 11 (normal levels are between 12-14) which is
fantastic. My guess is that once this 'boost' of iron is over with, we
might need to go back maybe once a month. I will know more after we go
back on the 29th.
Nicky's hamster died last week... boo... Nicky was so sad. He picked the
dead animal from his cage and I found him holding and caressing him. I
thought it was kind of gross, but he didn't, so.. okay. I told him to
give me a few days to find the time to clean the cage real good and
we'll go get him a new hamster (or hamsters plural? We'll see) when his
dad comes to visit this coming Sunday for a week. His birthday is next Thursday
(a week from today!) and he's very excited about that! Guess what the
decoration will be on the cake? But Shrek, of course!!
mommy @ 9:53 AM
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friday, october
15, 2004
We got back a couple of
days ago from Stanford for Nicky's 8th throat dilatation. It had been
since August 2002 that he had one and I suspected that we honestly could
not wait any longer. "Not a moment too soon" I told his Dr as
he was being wheeled into the OR. Nicky had started throwing up phlegm
and blood a few days earlier and could not stop.
The surgery went very well. The Dr. told me I was right! The surgery
truly could not have waited any longer. His throat was down to 1mm. That
is a miniscule amount to pass any saliva, let alone any food. They
stretched it to 8mm and it will be good for some time now, I am hoping
at least a year or so.
Nicky decided he was going to be Shrek this Halloween! Not a surprise,
really! He chose the Shrek theme for this, his website, as well. I got
him a cute outfit and he will wear it for the first time next Sunday at
the Southern California's EB meeting. It'll be fun.
The visit with his dad went well! He really misses his dad so they have
a lot of fun playing constantly.
Other than that is same-o same-o, next week we'll take two trips down to
CHLA for two iron transfusions and then that is it. For now
anyway!
mommy @ 4:46 PM
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saturday, october
2, 2004
Nicky is so happy today!
His daddy is coming to visit from Arizona for a few days! He was so
excited he couldn't sleep! He's just so funny. And what a good kid. This
past Monday I took him to get his second blood transfusion and he was so
brave. He did throw a fit when they took his blood (which isn't good
because when he acts this way then he ends up throwing up! Ugh!) but
during the transfusion he was an angel. He even played with Connor! So
funny...
We will be going back next Tuesday for an iron-drip, and the week after
next we're driving up to Stanford for his 8th throat dilatation. This is
the first dilatation in two years, remarkable considering we had to do
one every three months!
Skin wise he's doing okay I guess. His best areas are his chest and
upper arms, the rest of his body is fair game, they can and have wounds
that might heal quickly (in a couple of weeks) or months or be chronic
which scares me to death.
In school Nicky is doing fantastic! He got student of the month for July
and was put in the Principal's Honor Roll. His first trimester report
card shows all As and one B in Math. The only reason he has that B
instead of an A is because they time him with problems, such as 25
problems in one minute or 100 in 4 minutes, and he has a very hard time
with that.
He's now at home and will remain at home for the next 3 weeks. He will
go back to school on October 25th. He decided he's going to be Shrek for
Halloween so he can't wait for that!!
mommy @ 9:49 AM
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