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A
Father’s Prayer
by General Douglas Mac Arthur Build me a son, O Lord, who will be
strong enough Build me a son whose wishes will not take
the place of deeds; Build me a son whose heart will be clear, whose goal will be high, a son who will master himself before he seeks to master other men, one who will reach into the future, yet never forget the past. And after all these things are his, add, I pray, enough of a sense of humor, so that he may always be serious, yet never take himself too seriously. Give him humility, so that he may always remember the simplicity of true greatness, the open mind of true wisdom, and the meekness of true strength. Then I, his father, will dare to whisper, "I have not lived in vain." ( This reflection was written by General Mac Arthur, during his early days in the Philippines during the Pacific War, and was left as a spiritual legacy to his son Arthur. Made public after the general’s death in 1964.) |
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September, 1
Today was an incredible day for Jayden. He did the
best he has ever done with therapies. He was vocal in speech and was
imitating sounds and facial expressions. He has extremely vocal all day.
He sat in OT for 20 minutes WITHOUT assistance while playing. He rode
the tricycle today better than ever, pedaling all by himself. He was on
a role today. We were so shocked of how well he did in all his
therapies. He sitting up on his own in bed for a couple of seconds. He's
building up his strength everyday.
The EEG showed fewer seizures so the neurologist
has upped his depakote another 125mg a day. So now he gets 250mg in the
morning and at night.
He looks fantastic, smiling with every
accomplishment. We're truly lucky!
Please continue to pray for all the sick children
here. We have met some great parents here who are going through so much.
I want to congratulate Joanne Melore who had a
baby girl yesterday. I'm sure she's beautiful. All the best to the
Melore family. I know Jayden misses his buddy Lorenzo.
Love & blessings,
Andy, Jenny, and Jayden
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September, 2
So how was your day?
Ok here's mine. Woke up late, driving to the
hospital crashed into the back of mini van, the woman was ok and a real
sweetheart. I crushed the back of her van and she is praying for Jayden
and our family. I will spend tomorrow night fixing my truck the best I
can. I get to hospital and Jenny tells me how good Jay is doing so far
but really doesn't want to eat or drink anything. I try for over an hour
to feed him lunch with little success. We take him outside to ride the
tricycle so he pedal anywhere, he pedals like lance Armstrong all over
the parking lot downhill and with amazing strength uphill. We come back
inside and I give him a little pudding, but still no liquids. We sit
outside for a while and Jay was very vocal with sounds and mumbles, then
his speech therapist came outside for therapy and Jayden as usual became
less vocal. But he is very interested in everything around him, very
exploratory. he then fell asleep right before dinner, when he woke up he
did want to eat or drink anything. I tried everything I could find.
After an hour he finally took a couple of sips of juice and then threw
up all over me. I then bathed him got him back in bed and it was med
time. He took his meds with applesauce and held it in his mouth for 20
minutes and then finally spit it in my face. So one of the nurses came
in held Jayden down while I got Jay to drink the meds mixed in juice. 5
minutes later the resident doctor came in and wanted to look a Jayden's
throat to see if it was infected and that's why he did not want to eat,
well his throat is infected but the tongue depressor made Jayden throw
up his meds on me again. We waited 30 minutes and another nurse came in
held Jayden down and for the 3rd time I forced his meds in his mouth and
he swallowed them. He is now resting in bed watching Finding Nemo with a
big smile and sitting up on his own. After the day (and past 5 months) I
have had I should be a nice padded room, but looking at this beautiful
child who has endured so much more than I ever will, he still continues
forward everyday through all tough times, and most important he does it
with a smile. Not just a smile but a smile that recharges my heart,
strength and faith. I am so proud of him, my hero Super Jayden! He is my
inspiration and reminds me what is important and how beautiful life
really is. We all have rough days, but remember how lucky we are to have
everyday. Enjoy each day, enjoy life, enjoy everything you can. Remember
what is important. Don't sweat the little stuff. And always try and
laugh a little each day, there is humor in almost everything. laughter
is the best medicine, I always thank my dad (My other hero) for teaching
me that. And I thank Jenny & Jayden for laughing with me or at me. Good
night & God bless you all. Thank you for your continued prayer &
support. Love Andy, Jenny & Jayden
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September, 3
As the rollercoaster ride continues, Jayden had
some more vomiting issues today. Blood was drawn to check his liver, any
infection, and hydration. Thank God the liver tests are normal, he is
very slightly higher in white blood cells and very slightly below normal
in hydration. We will continue with the liquids and get him to eat what
we can. No fever and his vitals are good. It could be a virus in his
system. It could be due to all the active movements he makes with
sitting up and laying down several times in a row causing him to feel
dizzy or fluid draining a little too quickly, like they suspected weeks
ago. But no definite answers. That seems to be the pattern with every
new bump in the road. We don't know.
Unfortunately, they want to keep an eye on him
tomorrow, so going home is NOT an option, at least not for Saturday.
Maybe Sunday, if he's feeling better. We're still scheduled to go home
on Wednesday, but until we feel he's better with all this, we'll
postpone it if we need to.
Other than that, Jayden is still smiling like a
champ. He's very vocal and has a great attitude despite what he's going
through. We can certainly learn a lot from his example.
Have a great holiday weekend. As long as I have
Jayden and Andy, it'll be a great weekend for me as well.
Love & blessings,
Andy, Jenny, and Jayden
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September, 4
HAPPY BIRTHDAY
Jayden would like to wish his mom, the
best mom, the most dedicated mom, the most loving, caring, sweetest,
best hugs & kisses giving mom in the world a very special birthday. And
he would like to thank her for being so strong and standing by him
everyday with nothing but love and hope in her eyes. And looking into
her eyes everyday gives him the strength and encouragement and just lets
him know everything is OK. Love Jayden
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September, 5
Life is good!
We are home for the night as a family for the
first time in 5 months. Jay is doing great. We will return to the
hospital Monday evening and if all goes well we will come home for good
on Wednesday. There is no place like home, there is no place like home.
Love Andy, Jenny & Jayden
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September, 6
We had a great 2 days home and cannot wait to home
for good on Wednesday. Jenny & I know from these past 2 days Jayden will
progress so much more once he is home for good. We cannot wait. I much
as I will miss this most uncomfortable cot in the world, it will be nice
to sleep in my own bed every night. I will miss this computer here which
has felt my flowing happy typing on good days, and pounding of its keys
on angry tough days, it has also survived some tears running down into
it. I will miss the families and children Jenny & I have met here, we
have shared so much and supported each other so much. We have seen so
much on this journey, I am grateful for all that I have experienced so
far. I have learned so much, and have a whole new outlook on life. As we
close this chapter and move on to another as we go home, this journey
continues. Thank you to all of you for helping us this far, you have been
an important part in all of this. Stay tuned for more adventures from
Super Jayden! Good night and God bless. Love Andy, Jenny & Jayden
You can read it all from the beginning at
http://meningitis-angels.org/Jayden's%20Journal%20to%20Recovery.htm I
do just to remind us how far we have come, and that there are miracles
if you have the faith.
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September,
7
Well, this is our last night here. can't believe
we've been here over 4 months. although this ride is not over, we can't
wait to have Jayden home. what a difference 1 night home had on him. he
did great in therapy today. he was vocal in speech, for the first time
with his speech therapist. in to, his therapist, Renee, held his hands
he stood himself up and took steps. we couldn't believe it. he also
stood in pool with little assistance. it's as though he knows he going
home. not to mention being interviewed by Arthur, from CBS. Jayden is a
celebrity!
as hard as it has been to be here, this place has
been incredible. the therapists, the nurses, doctors, and all the other
employees here have been great. we'll probably be coming 3 times a week
for outpatient, plus Andy and I will do our own therapies at home with
him.
we will continue to send updates, but probably not
everyday, unless awesome things keep happening, than we'll have to share
it all with you.
thanks you for your prayers and support. now that
we'll be home, we'll probably need you all even more. so many people
have offered to help us out along the way and we haven't taken you up on
it, but we'll definitely need you when we're home.
thanks for reading our updates everyday and for
listening when we've called out for help. I especially want to thank my
parents who came everyday to the hospital. we couldn't have done this
without you. you have always been the greatest example of loving,
caring, respectful parents.
we love you all. we can't wait to see you at the
spaghetti dinner. Jayden has a lot of love around him and when he can
personally thank you, the huge celebration and bash will happen.
love & blessings,
Andy, Jenny, and Jayden
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September,
8
This update is coming from HOME! We are all home
and soon be snug in our own beds. AHHHHHHHHHHHHHHH That was a giant sigh
of relief. We still have a long road ahead but today we reached a giant
goal. Jayden is sitting up in his room and sliding his butt to get
around. He just looks at everything and smiles. He is so happy to be
home. And so are Jenny & I. As nice as it is to be home we will miss all
the staff at Children's Specialized hospital, they are the most
professional, caring, miracle workers we have ever met. We will miss the
other families whom we have been through so much with. And we will miss
the children whose amazing spirit and drive have truly inspired us. We
will be going back 3 times a week for therapy, a couple of hours a day
but we all get to sleep in our own beds and enjoy time in our home.
Thank you all for your continued prayer & support, you have helped get
us home! Thank you. Good night and God bless. Love Andy, Jenny & Jayden
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September,
9
Jayden is definitely enjoying being home. He is
eating great, smiling & laughing, playing with his toys in his room, and
learning how to get across the floor to different toys by sliding
himself. There really is no place like home. Jenny & I are getting into
a routine and it will take a few days to get it right, but as long as we
are here together nothing can stop us now. Good night and God bless.
Love Andy, Jenny & Jayden
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September,
10
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September, 11
IIts been a tough past 2 days, Jayden was having
frequent and strong seizures yesterday so we took him to St. Joes
Hospital in Paterson to see the Neurologist he saw when he was there in
April. We saw another Dr. who wanted to up Jay's depakote and add
Ativant again. We gave the ativant to Jay last night which was supposed
to calm him down, but he was wired and up until almost 4am. He was wiped
out today and tired and still having frequent seizures, a little less
than yesterday. We have to give the increased depakote time to work.
Jenny & I hope we can find a solution soon. The seizures are getting
stronger and stop Jay from breathing for a few seconds, and when he
recovers he is exhausted and scared. It is not getting any easier to
watch. He is still a trooper, playing on the floor, scooting across on
his butt, and now turning around in different directions. He was very
quiet today, no sounds? Well it is still great to be home, it is allot of
work everything we must do, but we are very thankful that we can do it.
Please remember how important life is, and how important those close to
you are. Enjoy everyday, always! Please pray for those who were lost on
this day 9/11/01 and there families. Life is precious. Good night and
God bless. Love Andy, Jenny & Jayden
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September, 12
No Report This Day
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September, 13
Had a good day with Jayden. Tomorrow we start
out-patient therapy. Jayden will also see his doctor there. Another EEG
will be scheduled to check his
seizure activity. He gets them quite strong and very often lately. We may need to add another medication. Blood will also be drawn to check his depakote level. He looks great, despite the seizures. The road continues to be bumpy, but we move forward. love & blessings, Andy, Jenny, & Jayden
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September, 14
Real quick Jay is doing good, we had our first day
of outpatient therapy and it went well. Jayden is still having the
seizures and they are still very strong and frequent so Jenny & I need
answers, we cannot stand to watch Jayden go through them anymore, they
are stopping his breathing for a few seconds and when he recovers he is
exhausted. So tomorrow morning we will head out to Columbia Presbyterian
in NY, where hopefully we can get some more answers. They will probably
want to do a bunch of tests or even admit Jay for observation, whatever
it takes to get to the bottom of this we will do for Jayden. Wish us
luck and pray. Thank you. Good night and God bless. Love Andy, Jenny &
Jay.
Thanks for the talk this morning Figel
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September, 15
We went to Columbia today and Jayden's neurosurgeon
was pleased to see Jayden doing well with the shunt. he witnessed one of
Jayden's seizures and was very concerned. although, oddly enough, Jayden
being able to have these seizures tells him that the shunt is
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| September, 16 No Entry |
| September, 17 No Entry |
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September, 18
Oh what a night!
Last nights dinner for Jayden was amazing! Jenny &
I are still pinching ourselves. Thank you to everyone who worked so hard
to put it all together. Thank you to Paul Sconciafurno for a hilarious
job of announcing everything. Thank you to everyone for the great prizes
raffled off. Thank you to everyone who worked so hard in the kitchen.
Thank you to everyone for your kind words of strength and encouragement.
Thank you for your hugs. Thank you to Doug Laverty for donating the
50/50 to Jayden. Thank you all for taking the
meninigitis-angels.org
brochures and informing yourselves. Thank you for
a perfect night! We all had a super great time, Jayden was laughing and
smiling all night. Thank you for a room full of love for our Jayden,
that was probably the best therapy he has had yet. Thank you again
April, Shirley, Lynn, Cindy, Edie, Kenya, Ariel, and all my girls who
worked so hard last night, you should be very proud of a perfect night
you put together. We once again wish to thank everyone involved & for
your support! Jenny, Jayden & I are truly blessed to have people like
all of you in our lives. Love Andy, Jenny & Jayden still smiling from
last night!
THANK YOU
WE LOVE YOU ALL!
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| September, 19 No Entry |
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September, 20
Just a quick update on Jayden. He's doing fine. He's
a |
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September,
21
No Entry September, 22 |
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Howdy yall,
Well today has been 2 weeks since we are home from
living in hospitals for 5 months. Jenny & I are
still slowly getting adjusted to it. It is allot
more work than we expected but there is nothing home again with Jay.
Just as Jayden is learning everyday, so are Jenny & I. Jay is doing
better on the new meds, he is getting less seizures and he was a little
less dopey today, although we upped the meds a little today and will
over the next few days. We would rather have Jayden sleepy from the meds
until he gets used to them than from the seizures. Next week we go back
to Columbia Presbyterian in NY for the 48 hour testing and will
hopefully get some more answers. It will take some time to figure out
how to control the seizures but we will do whatever we have to so Jayden
can continue his recovery. He did OK in his therapies today although he
was a little sleepy. Yesterday Jenny & I got a real treat, Jayden was
always very ticklish on his thighs but has not responded until yesterday
when I tickled him there and was hysterical laughing. I truly believe
that a child's laughter is the greatest sound in the whole world! Jayden
continues to laugh and smile at us everyday, we make sure to do silly
things and let him know it will be alright. Laughter is the best
medicine, don't ever forget that. Jayden also spoke to me yesterday, I
was feeding him and he looked at me with clarity in his eyes and he said
"no more" and went into a seizure. It must have overwhelmed him, and I
almost passed out. He has been trying so hard to come through this fog
that he is in, but the fog is slowly lifting and soon it will be clear.
We must again thank everybody for a wonderful time last Friday night at
the spaghetti dinner. And of course we must always thank everybody for
your continued prayer and support. And as always we thank God for
everyday, we know how important each day is, and how important living
each day is, and how important we all really are. Good night and God
bless. Love Andy, Jenny & Jayden
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