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Harris Children
Lizzie Jon Jon
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UPDATE: 7-11-03
Just wanted to let you know that Jonathon did well with his procedure today.
The surgeon was able to go in and close up the fistula (j-tube stoma) and he
is sure we should have no problems. Jon Jon was a trooper as always,
however seems to be a little out of sorts. It has been a long few days for
him and I am sure he will be glad that we are NOT going to any doctors or to
the hospital tomorrow.
I am to give him Tylenol every four hours for the next 2 days and that
should help with any discomfort. He seems tender, as to be expected - but
should heal up just fine.
Thank you all for your prayers. This has been a rough month for us and it
is only the 9th!! - We have 3 more visits to the hospital, one lab visit and
then surgery for the removal of his tonsils and adenoids (which will be an
overnight stay). We will surely be thankful for the 1st of August!!
Oh mustn't forget that we were able to discharge two of Jon's 10 medications
so he is now down to 8!!! Whoopee!
Be Blessed Abundantly,
Renee
UPDATE: 7-10-03
Just wanted you to keep Jon Jon in your prayers as he will be sedated for
the second time in 9 days as his stoma (hole) where his j-tube was will not
close. It seems he has granulation tissue and it is causing the site to
remain open. The surgeon will have to cut out and around the tissue, so the
opening in the inside of the stomach and then close off the top. Instead of
another "belly button or bullet" looking wound Jon will have a regular scar.
We were also at the hospital all morning today for his gastric emptying and
barium enema. I do not have all the results in yet - but do know that Jon
Jon does not have Herschprungs (spg?) but does have a long colon! Doesn't
tell me much - but will be seeing the gastroeterologist for a follow up and
will be seeing the urologist next week. Hopefully we will again have
definitive answers.
As always your prayers are coveted.
Be Blessed Abundantly,
Renee
UPDATE: 7-01-03
Wanted to thank you all for your prayers this morning.
Jon Jon did very well - and although we had to be there by 5:30 AM for a 7
AM procedure that takes 15 minutes - we all managed (we're tired - but we
managed!)
The pressure in Jon's eyes has increased. Normal is 11 through 14 and he
had pressure of 15 - 16 in his left and 30 in his right. The increased
pressure would indicate glaucoma, however the calcification on his right eye
seems to be the cause for the increased pressure in the eye. All things
said and done, his right eye is completely non functional. Because he has
not used his eye for so long his brain has terminated the connections and
there is no chance of repair. He as also lost some more vision in his
functioning eye (left) - he needs new lenses as his myopia (nearsightedness)
is now -8.5!.
We will continue the medication for his right eye that is given for glaucoma
until it is discharged as it can effect his cardiovascular system and
eventually will do nothing for his eye.
Jonathon remains legally blind because of his nystagmus (wobbly eyes) and
will eventually become medically blind in his right eye. I know this may
seem like devastating news, but these are things we have known and are
relieved to finally have an answer. Jon Jon always sounds worse on paper -
as functually Jon has no idea that he has limited vision that is impaired
with only having one functioning eye!
As an added note we were unable to see the surgeon today- so we will wait to
see if his stoma closes by Monday - if it does not we will have to have it
surgically closed!
Thanks so much for your prayers.
Be Blessed Abundantly,
Renee
UPDATE: 6-30-03
Just wanted to ask if you would say a little prayer for my son. Tomorrow
morning at 7 a.m. he will have yet another sedated eye exam. I am asking
you to believe with me that we will have definitive answers regarding his
vision, retinas and corneas.
Jon Jon has several procedures schedule this month along with having his
tonsils and adenoids being removed on the 31st. If the Lord lays him on
your heart - please pray that all goes well, that the procedures are not
stressful on Jon and that we have "absolute answers". It is aggravating to
have all these things done to your child and end up with no more direction
than when you went in.
Also - we will stop in an see his surgeon as his j-tube sight is still
leaking and his stoma is raw and irritated (as is his tummy from the
allergic reaction he had to the adhesive). I would like the surgeon to
stitch it closed or for it to be touched by God and heal immediately. The
God I serve could do the latter in a heartbeat!....
As usual, I covet your prayers and will keep you posted...
Be Blessed Abundantly,
Renee
UPDATE: 6-25-03
Just wanted to thank you all for your prayers - Jon Jon's j tube site looks
a bit better. (He had it removed yesterday - although he still has his
g-tube). It isn't leaking quite as much today. I have loaded his tummy up
with barrier cream (where the tape made his skin raw) and desitin with
crushed tums all around the site. I used some gauze on the site and
then wrapped his belly with an ace bandage for pressure. He seems to be
doing better today and we even got out for a bit to get some sun on our
belly.
Jon doesn't seem pleased with his button being gone - he keeps looking at
his belly - I am sure to him he is lopsided!!
Also wanted you to keep him in your prayers as he will be sedated Tuesday
morning for an eye exam. Going in on the 9th for a gastric emptying and
barrier enema (to see what the deal is with his BM's or lack thereof) and
will be getting his tonsils and adenoids out on the 30th of July.
Oh - and one more thing - praise God - his EEG came back normal - Jon Jon is
not having seizures!!
Be Blessed Abundantly,
Renee
UPDATE: 6-23-03
I just wanted to let you know that the doctor was able to remove Jon Jon's
j-tube today. Although Jon is still g-tube dependant, he has not used his
j-tube since last October. We have been having problems with it leaking
stomach acid and remaining raw, so it was time to have it removed.
I would ask that you pray for Jon's comfort as the Lord lays him on your
heart. Not to be graphic - But there is a hole in my sons stomach that goes
to the inside of his tummy. It usually takes 72 hours for the hole to close
completely - but in the meantime food/stomach acid leaks out. Jon Jon had
an allergic reaction to the tape used to hold the gauze in place when the
button was removed and his tummy was leaking some after his last meal and it
burned his skin awful - he was screaming in pain (woken from a deep sleep).
As always your prayers are coveted.
Be Blessed Abundantly~
Renee
UPDATE: 6-20-03
Just wanted to thank you all for your prayers and support. Jon Jon saw his
allergist today and of course today Jon was having a great day (although he
hadn't had anything to "eat" since midnight because of the EEG). The
allergist feels that skin prick test we had done several months ago was
negative - Jon Jon does not have allergies? MMMM, wonder what he is
suffering with? Any how - he ordered blood work for a RAST test to check
for allergies and is increasing his one med. I sure hope the blood work
shows something positive as I would like to know why my son has dark circles
under his eyes, a runny nose and excess mucous!
As for the EEG - it went rather well all things considered. They ended up
giving Jon 1 1/2 chloral hydrate suppositories before he finally passed
out. He did real well with the EEG - but surely was freaked out by the lab
techs that woke him when they took the blood sample for the RAST test!!!
He was a bit woozy the rest of the afternoon - and at present is sleeping
soundly. Hopefully he will be back to himself tomorrow and we will hear
about the results of both test soon!
Be Blessed Abundantly,
Renee
UPDATE: 6-19-03
Tomorrow we go to the allergist in the AM. Jon Jon is retching and vomiting
at most every meal, his allergies are out of control and he looks pitiful.
We also have an EEG scheduled for 1 PM. There is reason to believe Jon Jon
has had a seizure. Incase none of you have had the pleasure of taking your
child for an EEG - it is a draining afternoon. We are asked to keep him up
to midnight and get him up at 4AM so that he is tired and will sleep during
the study. I would love to see a report of the children that actually slept
through the study as we have NEVER had that experience. The children I have
had get an EEG have/had sensory issues and people sticking electrodes to
their head has never gone over big. Besides wanting my son tired they also
need him cut off his feeds at midnight....and then nothing but clear liquids
till 11 AM. This is not possible for Jon as he can tolerate clear liquids
with out reflux and keeping him on a drip feed till midnight will cause
great discomfort and vomiting. Poor little fellow.
Pray that our day goes smooth as between the allergist and then a 2 hour
long EEG - we should be pretty spent tomorrow!
Be Blessed Abundantly,
Renee
UPDATE: 6-17-03
Just wanted to keep you updated - as I said - this is a busy few weeks for
Jon Jon.
The gastroenterologist was pleased with Jon Jon's weight gain - at 37
months he is 28 pounds 13 1/4 ounces!!! He is still concerned about Jon
Jon's bowel movements - or lack there of. We had blood work done and have
several test that will be ran - a gastric emptying and a barium enema.
There are several factors we must rule out. He also agreed to let me try a
different formula with Jon that is made out of "real" food. I am very
excited about the prospects of allowing Jon Jon to have something that is
more "natural" than chemically based, overly processed food. The formula
will be here tomorrow and we will introduce it slowly and prayerfully he
will do well.
Jon Jon is having a terrible time with his allergies right now. He is
retching and vomiting and almost every meal. He has dark circles under his
eyes and has slept A LOT the past two days. The weather and humidity are
not helping us. He is just so pitiful. His allergies are causing him to
experience sensitivity in his ears and he spends a lot of time pressing his
hands over his ears. I will be so thankful for a break in the weather!
Jon Jon also will be getting casted for his orthotics on Thursday.
Thanks, as always for your prayers and support.
Be Blessed Abundantly,
Renee
UPDATE: 6-14-03
Seems this is a busy month for Jonathon as far as doctor appointments go.
We are still having issues with constipation and we will be seeing the GI
doctor on Monday. We will be focusing on this issue again to see what we
can do.
Jon Jon is in need of new orthotics for his feet - and will be casted on
Thursday and hopefully receive his orthotics soon as he is extremely fat
footed and is turning his feet and legs inward. We will also be ordering a
Benik's vest - it is a weighted vest to give Jon Jon the deep pressure his
body seems to require. Jon Jon also needs equipment for "listening therapy"
(a sensory-neural integration therapy). I am sure all this comes with
fighting the insurance company to get what Jon Jon needs!
We did get our new pump and it is wonderful - the tubing is rather sensitive
so we get a few more alarms than I would like, but Jon Jon and I are LOVING
the freedom we have while he is eating!! He walks all over the house and we
are not tied down to a feed for 45 minutes! It is such a relief - we
actually enjoy feeding a bit better!
We also have an appointment with the surgeon about possibly removing Jon's
j-tube (not his g-tube - he will have this for a LONG time) and an
appointment with the ENT to talk about possibly removing Jon's tonsils and
adenoids.
Jon Jon is doing so well - the listening therapy has made a dramatic
improvement in his "speech" and he is currently only doing it twice a week.
Once we get the equipment it will be every day for a certain amount of time
each day. I can only anticipate the improvement in his development then!!
I ask that you continue to keep Jon Jon in your prayers. He has come so far
in such a short time. His progress amazes me daily. He still has quite a
way to go ~ but he is definitely headed the right direction!
UPDATE: 6-01-03
I had a long talk with Jon Jon's Physical Therapist the other day. The good
news is Jon Jon has reached most of the goals she has set forth - the bad
news is, he can not reach the other goals as his vision impairment gets in
the way. These are things he can do - if he has a "set of eyes" that can
help him - a person or a way of defining his space/environment around him.
She will be getting together with his vision therapist to hopefully get a
game plan together and see if some type of "cane" training would benefit
him. Jon Jon does wonderful at home as far a ambulating, but when he gets
in a very unfamiliar area - that is large that he is unable to define the
space around him - he is lost. He relies on others to let him know where
everything is.
The PT also explained some other areas he was being affected by his vision
impairment and suddenly so many things made sense to me. I had no idea I
was putting my son in situations that he could not handle because of his
inability to see as well as others. (Bad mommy!) Because Jon Jon does so
well at home - I often do not see him as a visually impaired child.
Jon Jon is also using his feet for sensory input to help him learn about his
environment. Not really a big deal for most - but to get the most input he
turns his feet inward (towards the inside) - which is causing some
irregular bone growth and flat footedness. PT was thinking once he learned
to use a cane - some of that would be eliminated. He also has inserts in
his shoes with very high arches to help, unfortunately - both his inserts
and shoes are now to small. We got new shoes - but won't be able to order
the orthotics for a bit.
On July 1st Jon will go for an EUA (exam under anesthesia) with two of his
three eye doctors, the ophthalmologist and the retina specialist. This is
the 5th time in three years he has had to have this particular procedure
done, but hopefully we will be able to gather enough information to know
where we are at as far as his vision.
We will also be seeing the surgeon on the 23rd of this month to discuss the
removal of his J-tube. Jon Jon has not used this tube in over 7 months.
There is a chance we may be able to have it removed. I am a little nervous
as once it is removed - it is gone - it can not be redone. However at this
time it is continuing to leak and causing discomfort for Jon, so we will
see. (Jon Jon will still have his g-tube as he still takes nothing by mouth
and relies on the tube for complete nutrition).
Sorry this is long - but I wanted to keep you informed and as always covet
your prayers.
Be Blessed Abundantly~
Renee
UPDATE: 5-23-03
Jon Jon has a new nurse that started last week and we are very excited. She
is very committed to Jon Jon and to his reaching his fullest potential.
Have to say she has her work cut out for her as Jon can be very obstinate
when he does not want to do something or something does not go his way. I
am sure in a week or two when he realizes she is not going away and will not
be "bullied" he will soften up and we will begin to see great progress.
I also want you to rejoice with me in the fact that Jon Jon recognizes
several shapes and pictures on a consistent basis with no assistance and
diligently ties to use words to name them. Also - with some assistance he
can count from 1 to 13 and say his alphabet. We are so proud of him (and he
is of himself too). He works so hard to do the simplest tasks that we take
so much for granted. I know God has a great work for Jon Jon - I continue
to hold on to and encourage myself with Jeremiah 29:11 - For I know the
thoughts I think towards you (Jonathon), thoughts of peace and not of evil
to give you a future and a hope....
Also - another God thing...we have been wanting a "special" feeding pump for
Jon Jon that is very mobile and compact (small enough to wear in a VERY
small backpack on his back). To make a long story short - we have gone
through a lot of paper work, phone calls and red tape - and we finally got
it approved through his insurance and hope to be set up with the DME in the
next week or so. This pump should help so much with his feeds and caloric
intake. I am so excited I couldn't help but scream praises this afternoon
and do a little dance when we found out the news this afternoon.
Thank you for all you do - and for all you prayer warriors. It is such a
blessing to know I have others to pray for us and rejoice with us.
Be Blessed Abundantly~
Renee
UPDATE: 5-07-03
Dear Saints,
It is with a heavy heart that I write to inform you DCS will be removing
Hanna from our home sometime tomorrow.
At present Hanna is doing fantastic - she has adjusted to her feed
schedule that I had her on and even slept through the night last night. She is
smiling and enjoying all the activity our home provides and she is a joy
to care for. She even rolled herself over from her back to her tummy!
However, she is presently under the authority of one doctor that I can not
work with. Her need for control completely goes against my conscience. I
do not think that I can do what is best for Hanna and continue to work
with the doctors that are over her. DCS is not willing to allow me to work
with the doctors of our choosing and that are just if not more qualified.
Simply put - it is politics. And for those that know me well, know I don not do
well with politics and although I truly have Hanna's best interest at
heart it will not work out.
I want to let you know that I did all I could for Hanna while she was in
our care and that we will continue to hold on to the knowledge that God will
be with her.
I will also add that although I am saddened by the turn of events - I am
completely at peace that I am making the right decision. I will also add
that although Michael and I are humbled to be used in this capacity we
will voluntarily close our house down and will no longer accept foster children
from the state.
Thanks for your prayers and support,
Renee
UPDATE: 5-05-03
I realize this may be redundant as I send something like this out every
year - however I would love for you to once again rejoice with me on this
monumental day.
3 years ago a little boy was born 3 months too soon, weighing in at 2
pounds 9 ounces, with little chance for survival. After incredible medical
intervention he was stable but it didn't seem possible he had much of a
chance for survival, born too early, do a mother who was hooked on drugs
and then abandoned in the hospital for the first three months of his life.
But God had a plan, and His plans are for good and not evil...
We are humbled to be part of that little boys life, meeting him at three
months old and eventually being able to get him home at 4 months old. The
prognosis was grim - he probably wouldn't make it to his 1st birthday, and
IF he did he would spend the first year of his life in and out of the
hospital because of his poor lungs. We were also told he would never
walk, be wheelchair bound or at least need assistive device to aid in walking,
not have much "up there", be severely impaired visually..blah, blah, blah
I ask you to rejoice with me as my son Jon celebrates his 3rd birthday
today. He is FULL of life!! In spite of his visual impairments, he gets
around quiet well - with his own two feet - no devices needed! Although
the first year was rough he was only hospitalized twice for a total of like 9
days for his lung problems. And although he is limited verbally - he is a
VERY smart boy, affectionate, strong willed and very determined!
Thanks for letting me brag on the goodness of God - take each day for it's
worth and don't sweat the small stuff.
A great big Happy Birthday Jon.
Be Blessed Abundantly~
Renee
UPDATE: 5-03-03
Rejoice with me, friends and family - as today Hanna is here. We got home
from the hospital about 6 PM and proceeded to get Jon Jon ready for bed
and then overwhelmed Hanna with a bath. We went out to Trisha's funeral and
then back home to get her ready for bed. She was already so stressed
out -I placed her to bed in her clothes. It is after 9:30 and she is in no
hurry to go to sleep - but laying quietly in bed.
The next several days (or weeks) will be full of adjustments. There are
many things that are still not in place for Hanna and several things that
are that conflict with already scheduled things.
I ask that you continue to pray for Hanna and that you will also continue
to pray for me. I love being used by God in this capacity.
I am not sure about Hanna's length of stay - that is not for me to
decide - it looks like she would be with us for some time - but you never know. I
hope to see those of you I can at church on Sunday if all goes
well.....Jon Jon has the sniffles.
Be Blessed Abundantly~
Renee
 
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