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Harris Children
Jon Jon
New Picture
UPDATE: 4-23-03
NEW HARRIS CHILD:
I was able to see my foster placement today at the hospital- and your
prayers must be getting through - as she looked so good and was in rather
good spirits - all things considered. They removed the ng tube and will
start clear liquids through
her g-tube tomorrow. I am believing all will go well and her staph
infection will be under control so she will be released Thursday or
Friday.....
I still ask that you pray for favor for me in dealing with those in
authority over her - grace, grace and more grace is not asking too much from
our Lord.
If I may I would also ask you to press in for her sibling - the state has
awarded custody back to the birth mom (as she has done no harm to the
children) and the lawyer is pushing the birth mom to regain custody of our
placement. I only want what God wants - but my natural eyes tell me this is
a terrible situation for the sibling and a devastating one for
our placement....
I will keep you posted and covet your prayers and support.
Be Blessed Abundantly~
Renee
UPDATE: 4-22-03
I was notified last week about a foster placement -
a case of severe childabuse. In order to protect her
and our privacy I will try to be as
generally specific as I can (if that makes sense).
I have debated many times about asking you to post
this - put this preciousangel needs prayer as it is
obvious the enemy has made his mark and he is no
particular hurry to let go. She has been through
so much these past fewweeks, I will try to be brief.
The little girl is only 3 - she was severely abused
by a parent in whichsignificant brain trauma was
experienced. She was unable to function at all
including having to be vented to breathe. She is
now able to breathe on herown, but is unable to see,
speak, eat or move any part of her body other
than muscle spasms. She has been in the hospital
for some time and giventhe situation there is not a
person available 24/7 that is in authority over
her and many times her care is less than adequate.
She was recently fitted for a g-tube and it was
just discovered it wasmisplaced in the abdominal
cavity and not the intestines. Since she is
unable to speak she has been in great discomfort
for many days and as wespeak is having yet more
surgery to redo the g-tube.
I have only been able to go see her a few times,
she is precious and has alook of complete bewilderment.
It seems she is aware, somewhat of what is
going on around her, but not sure exactly why she
is not functioning. It isa terribly sad situation.
The whole case is extremely complicated and there
are many players and factors - and I apologize as
I have to be so vague.
I am hoping she will be able to come home late this
week. I have severalprayer request:
1) God have His will in her life - be it complete,
partial or no healing2) That the services and
equipment that she will need will be put in place
immediately
3) That I would have favor with all those involved
in her care so as we canwork as a team and help her
heal both physically and emotionally
4) I also ask that you agree with me that He would
encamp His angels abouther, that He will give His angels
charge over her, to keep her in all herways. That in
their hands they will hold her up lest she dash her foot upon
a stone. (Psalms 91:11)
I will keep you posted the best I can - and I am
sorry for it my post be sovague. The situation is
awful and confidentiality needs to be paramount.
God knows all - and as the saints lift this request
up - He will already
have it set in place.
-----------
Update: 4-20-03
The little girl I am to get has a staph infection.
Her new g-tube is inplace and she seems to finally
be resting some. Please pray that thisinfection will
clear quickly, and that she will tolerate her feeds well
enough to be released this week.
With much gratitude ~ Be blessed abundantly~
Renee
Mom to 4 here, 2 in heaven, and 2 in my heart
To call things that are not as though they are
You must first believe they can be.
UPDATE: 3-12-03
Just wanted to thank you all for your prayers. Jonathon
is doing fantastic. He is completely off his continuous/
supplemental oxygen, off his breathing treatments, handling
all his caloric intake in 4 bottles (a little over 9
ounces at each feed), and he "ate" an ice-cream sandwich
today!!
Be Blessed,
Renee
UPDATE: 3-10-03
Just wanted to thank you all for your prayers...Jonathon
is feeling much better today. He still has a runny nose
and some congestion - but is stable enough to be off his
oxygen during the day. He is not able to come off the
oxygen at night yet - but that is not a big deal. He is
so mobile and the O2 tubing was getting caught on everything
and making him very upset.
My concern now would be a relapse as both of his sisters
are sick with drainage, coughs, runny noses, soar throats
and low grade fevers!!
Be Blessed,
Renee
UPDATE: 3-09-03
Jon Jon seems to be doing a bit better every day. He still has a terrible
time keeping his oxygen levels up at night. He seems to be maintaining
during the day - but he continues to need his supplemental oxygen. We see
his pulmonologist on the 20th - I am sure by then Jon Jon will be fine. His
congestion breaks up more and more each day - at least he is not coughing
continually. I do not think we will have to go to the hospital for a deep
suction.
For now we are monitoring him closely, checking his stats often, keeping his
breathing treatments going every 4 hours and praying he will regain his
strength quickly. He is in a very good mood today - which blesses me so, as
he has felt puny for so long.
Right now we are weary as both the girls have come down with a cold,
terrible congestion and sore throats, my throat is scratchy and I have some
drainage. Isn't it nice when we all share!!
Thanks for all you do.
God Bless,
Renee
UPDATE: 3-06-03
Just wanted to let you all know that Sunday we went to the ER as Jon Jon was
struggling with his breathing and was coughing terribly. We had X-rays done
and a nasal wash and found out he had RSV. We were told to go home, ride it
out - as there is no medications to help get rid of it and to make an
appointment with his lung doctor for mid week.
I ended up having to see his pulmonologist the next day (Monday) as Jonathon
seem to be really struggling with breathing. We went in, they checked his
oxygen levels and they were at 88 - where normally they are 96 or better.
Jonathon was retracting and struggling for every breath. We got admitted to
the hospital. He was diagnosed with Bronchiolitis/RSV and Hypoxemia. We
could not get him stable with 5 liters of oxygen....we ended up being there
till today (Thursday).
Jon Jon is still not out of the woods. We came home on continuous oxygen, a
pulse oximeter(measures his oxygen stats and heart rate), back to back
breathing treatments, double steroids, antibiotics and chest percussion
therapy.
The doctor told me not to be disappointed if Jon Jon did not get better and
we ended up back in the hospital. He also explained that the Jon Jon's
inability to "cough" up the mucus might cause a problem. If he is still
really congested and struggling mid week we will have to go in and get a
"bronchoscopy" (sp) - a deep suction.
Because of Jon's weekend immune system - he will be homebound until May.
Thank you all for your prayers and support.
Be Blessed,
Renee
UPDATE: 3-05-03
I talked with Jon-Jon's Mother Renee. Jon-Jon is still
on oxygen and still having some problems breathing. They
have done exrays but she doesn't have the results yet. I
will call her again tomorrow morning to see what the status
is. Please continue to pray for his quick healing.
UPDATE: 3-04-03
I am writing for Renee. Her Jon is in the hospital with RSV. He started out
on 5 liters of oxygen yesterday and through the majority of the night. He is
down to 2 liters but is working really hard to keep his oxygen levels up on
the 2 liters. Days 5,6, and 7 are the worse days for RSV. He is in day 6.
Pray that he follows the normal course and gets better tomorrow. Renee is
tired from getting no sleep the last few nights. Please pray that she gets
some much needed rest even though she is in the hospital with Jon. Pray that
she and the rest of their family stays well.
Lore
UPDATE: 3-02-03 PM
Just wanted to let you know that Jon Jon does not have pneumonia, but he
does have RSV (Respiratory Syncytial Virus). This is a very contagious
lower respiratory tract infection.
This infection is similar to a cold - but is characterized this year with
very thick mucus secretions - and for Jon these are very difficult to move
about and is effecting his breathing. We were able to come home today as we
have caught the virus early on - although have been warned it lingers for
about 3 weeks and this week it will move down further into his chest. I
will make an appointment to see his Pulmonologist for mid week for a
re-check and will continue to believe we will be able to stay out of the
hospital. We have been given orders for breathing treatments every four
hours for the next few weeks, this should help him out.
Jon Jon is very sick - please keep him in your prayers.
Be Blessed,
Renee
*************************************
UPDATE: 3-02-03
Please pray for Jon Jon - I am taking him to Children's - his fever has gone
as high as 102.5 and at present is 100.6. He is having a very difficult
time breathing - yet in pretty good spirits. I am praying it is not
pneumonia and that they will send me home.
Renee
UPDATE: 2-27-03
Please keep Jon Jon in your prayers...He has bronchitis. This is a big deal
for him as he can easily aspirate and get pneumonia. This is the first cold
he has had this season - I am thankful for that - but I just hate to see him
suffer. He doesn't have a fever, and still seems rather active, the
unfortunate part is his drainage causes him to vomit, and with our tube
feedings it gets really messy.
I would also like to share that we have been able to transition Jonathon off
night feeds! His last feed is at 8 PM while he is sleeping - but it only
last about 40 minutes and all the other feeds he takes are throughout the
day. He is still having a hard time handling boluses - so we are having to
break his feeds up - or use the pump...it makes it more difficult to feed
him this way - but it is a step in the right direction for him. He was off
night feeds one other time - so to get there again is a good feeling.
Be Blessed,
Renee
UPDATE: 2-21-03
We recently got our inserts for our shoes that will help correct our
"awkward ankles" and toe curling. We were told that Jon Jon would have a
hard time adjusting to these, as it would force him to use different muscle
groups in his legs and hips and eliminate toe curling and therefore would
cause some "clumsiness". I wanted you to know he has adjusted fine, other
than he has just discovered he can take his own shoes off, which defeats the
purpose of having the inserts :)
We have also recently seen his gastroenterologist and he was pleased with
Jon Jon's weight gain....we are now at a whopping 27.12 1/2 pounds!!
Jon Jon is still not taking any food by mouth and is struggling with his
tube feeds. Not dismissing his GI problems, we, along with several of his
doctors and therapist feel a major problem is behavioral/psychological. We
are all trying to get on the same page and trying to get a behavior plan in
place to help him, but as with his oral intake, it seems to be a long drawn
out process.
We see his new physiatrist (developmental doctor) next week and hopefully
she will shed some light on the whole behavior/eating issues...I will keep
you posted.
Be Blessed,
Renee
UPDATE: 2-01-03
Jonathon is doing well other than his feeding issues and
frustration from his inability to communicate. We have
been trying to increase his tube feeding during the day to
be more like a "normal" feeding schedule for that of a
toddler and it has not worked - Jon Jon is retching,
coughing and has on occasion vomited. We are back
on night time feeds until he is stable and we will try
increasing his day time feeds in a week or two.
Our first priority is to be sure he continues to grow, gain
weight and stay healthy. Our second goal is to get him
to eat by mouth - this one will be a very difficult process
for Jon as he has a hypersensitive gag reflex, oral
hypersensitivity and high food aversion. Several doctors
have commented that Jon Jon may never eat by mouth
as he has a strong psychological aversion towards food.
But these are the same doctors that said Jon would never
walk! I know that one day Jon will eat by mouth - but
it is so very frustrating (for both of us). Every time we
make one step forward in this area we ultimately end up
taking 3 steps back! The fact that Jon Jon is (for all
practical purposes) non-verbal does not help matters,
as Jon can not tell me that he is or isn't hungry, or express
his needs and wants adequately. It is very frustrating for him.
Other than that Jon Jon is a happy little fellow, who loves
to watch his video's, bang his toys, color, listen to music
and "babble" all day long. He is very affectionate, cuddly
a good sleeper and to top it off - a very handsome little guy!
As for my Lizzie. I have not heard anything from DCS,
it would not be their policy to inform me of her well being.
We all continue to miss her terribly, knowing still, that we
did the best thing. My prayer is that God will heal her of
all her hurts and give her a sound mind.
UPDATE: 12-19-02
Just wanted to keep you all posted on Jonathon. We have seen several of his
doctors over the past several weeks. From a lung stand point his doctors
could not be any more pleased - Jon Jon has had no respiratory problems in
well over 1 year - his lungs have remained crystal clear!
We will be getting foam supports for his feet as he is curling his toes for
balance and turning his ankles in. When he gets these we were told he would
be more "clumsy" as he will need to use a whole new set of muscles (the
correct ones) to walk more "normal". Since Jonathon is 'visually impaired'
he relies greatly on his feet to tell him where he is - so this should prove
interesting. (He was always falling when he wore his ankle braces and
walking became very frustrating for him)
We will also be switching his g-tube feeds around to get him off the night
time feeds once again and prepare his little tummy to take in more normal
volume throughout the day. This has ALWAYS been a problem for him, but his
doctors/therapist feel if we want him to eat by mouth we first need to get
him on a more normal eating schedule with increased volume so he will be
able to tolerate oral intake. This will be quite a process for us as one of
our goals for him is to be able to eat by mouth. If Jonathon is unable to
tolerate the volume increase during the day he will go for more testing to
see if there is a reason why.
I appreciate all your prayers - Jonathon has come so far and he continues to
amaze us and the medical community.
Be Blessed
Renee
UPDATE: 11-14-02
We received some very encouraging news when Jonathon saw his Cardiologist on
Wednesday. It appears that there has been no change in the size of his
aortic dilation in the past 6 months and it is showing signs of stabilizing.
This simply put allows us to buy time and put off his heart surgery!
Also, as many of you know, Jon Jon has been completely g and j tube
dependant for most of his life. And although he "can" eat, he has not. We
are in the process of receiving therapy to address these issues and Jonathon
is showing signs of progress - although little, but we are going in the
right direction. Please agree with me in prayer that Jonathon will get over
his strong food aversion and be able to coordinate the bite, chew, swallow
and breathing patterns he needs to master this skill. Oh I rejoice in
advance for the day we will be able to remove his feeding tubes!
We have also seen the cornea specialist concerning Jon's right eye - there
is increased pressure and we are treating him for glaucoma right now. Jon
Jon's right eye has always had severe impairments - however the increased
pressure can be very painful....I do not want my son, who has suffered more
in his 2 1/2 years than most do in a lifetime, to be in any pain. Please
pray that God will heal Jonathon's eye.
Renee
UPDATE: 10-30-02
Just wanted to keep you updated. I took Jonathon to his gastroenterologist
and his pediatrician.....after talking with them, here is our conclusion.
First it appears Jonathon is allergic to red dye #40 - we recently switched
him to a medicine that has this dye and didn't realize it - this has caused
his behaviors to escalate. We took him off the meds and his behaviors have
improved somewhat already.
He did not dismiss his behavior -
but explained several reasons why Jon could be acting this way. He agrees
with our behavioral specialist, and we have several plans in force to help
Jon over come his extreme frustration and self injurious behaviors.
Stand with me as we continue to seek the Lord for complete healing in
Jonathon's life.
Renee
UPDATE: 10-28-02
Family and friends,
Jon Jon has always had some behavioral problems - but they were always
dimmed in comparison to what we were constantly dealing with when it came to
Lizzie. These past few weeks Jon Jon's behaviors have escalated - and he is
showing disturbing signs of self abuse. He has smacked his face with his
hands or his head against objects until he has left a black and blue mark on
his cheek, under his eye and on his fore head. I have made several calls
and I am trying to get him the help he needs. He is predispositioned to
have several "attachment issues" like Lizzie - but his not nearly as severe
as she was at this age.
I am believing God, with the mustard seed of faith I have left, that we have
caught this early enough in Jon Jon, and with the proper therapy and
parenting that we will help him over come this. Please agree with me that
God will help my son attach to us and stop these abusive behaviors. My
heart can not handle any more disappointment.
In Him,
Renee
UPDATE: 10-19-02
Friends and Family
Wanted to give you an update on Jon Jon's EUA (eye exam under anesthesia).
All went well, his retina's are attached and there are no tumors. However
his pressure in the right eye has gone up considerably and there is a
possibility of glaucoma. I am waiting for a referral from the retina
specialist to the glaucoma specialist and we will go from there....
Funny as considering all of Jon Jon's challenges - I always thought his eyes
to be the least significant - given his heart, lung and feeding problems -
but he has 4 different eye specialist now!!
Thank you for your continued prayers and I will keep you posted.
Renee
UPDATE: 10-14-02
Please be in prayer as Jonathon will be sedated yet one more time as they do
a thorough exam on his eyes tomorrow morning.
He is currently suffering with Band Keratopathy - calcium deposits - on his
right eye. The deposits are so thick that in order to see his retina they
would have to remove his cornea. There is too much risk involved in this
procedure, so they will be using specialized equipment, dyes and
sonogram/ultrasounds to check for tumors or to see if his retina is
slipping. The prognosis is not good as Jon continues to loose the vision in
his right eye. This exam may at least give a reason to why is vision is
dissipating so quickly.
I will keep you posted.
Renee
UPDATE: 9-06-02
Jonathon took his very first, completely
unassisted steps today. It was overwhelming.
He has walked with assistance for a long time
and couldn't seem to gain the confidence to venture
out on his own. His poor vision, couple with
his other medical conditions left us with a
prognosis of never being able to walk - and
if he did it would be with assistance. As we
all know though - we serve Mighty God - and my sweet
son is walking! (Oh are we in trouble now!)
Added: 8-02-02
A little about ourselves :
We are a foster/adoptive family approved by the Tennessee
Department of Children's Service. We have recently finalized
our 2nd adoption (September 2001). We have 4 children,
the first three being girls and the last our son: Mikayla
(almost 11), Rilea (almost 9), Lizzie (almost 5) and Jonathon
(27months old). Mikayla and Rilea are our biological children
and have been home schooled all but 6 months of their lives.
We have self diagnosed Rilea with learning disabilities,
possible dyslexia and ADHD. She learns much better in
the home atmosphere where school is bettered tailored to
her needs.
Jon Jon is our only boy thus far. He was born on 5-5-00
at 28 weeks and weighed 2 pounds and 9 ounces. When
we were notified about him, he was three months old and
still in the NICU. After dealing with Lizzie we were sure
we were not taking any other children, much less a child
that was labeled medically fragile. My husband and I
prayed about it and decided that we would take him in
and when he was 4 months old he was released from the
NICU. I was never so overwhelmed in life, here is this
little itty bitty baby with supplemental oxygen 24/7, a
heart monitor and pulse oximeter machines (the equipment
weighed more than him!) Jon Jon left the hospital very
unstable and the next year would be crucial to his very
existence. We were told before dismissal that he would
probably not make it to his first birthday and if he did
he would spend the first year in and out of the hospital
because of his Bronchopulmonary Dysphasia (lung disease).
Well - I am here to tell you that God's grace is sufficient -
I have hung on to and will continue to hold on to
Jeremiah 29:11 for Jonathon (For I know the thought
I think toward you says the Lord, thoughts of good
and not of evil to give you a future and a hope.)
Jonathon is now a thriving 2 year old. He is doing above
and beyond what the medical community had predicted;
he is walking with assistance, is very inquisitive and is
all boy (he leaves no leaf unturned and no corner uninvestigated).
In his short two years he has been through 35+ procedures
and operations and has been labeled with 19 separate
diagnosis; Allergic Rhinitis, Asthma Unspecified, Aortic
Root Dilation/Marfan's Syndrome Suspected, Band Keratopathy,
Cerebral Palsy, Chronic Lung Disease, Congenital Nystagmus,
Feeding Difficulties/J and G tube dependant, Gastro Paresis,
History of PDA, Neuro-Developmental and Global Delays,
Milk, Corn and Seasonal Allergies, Severe Myopia, Persistent
Gastro Esophageal Reflux and Retinopathy of Prematurity!
Don't let the list scare you, what you read is not what you
get, as I said Jon Jon is all boy and although he is still very
behind in many areas I have been given the privileged to
watch him go from a “there is no hope for him beginning”
to a “there is no stopping him now future“.
Well, Ms. Ricards - I guess that describes my children in
a nutshell, there are days I am sure I must have missed God (ha-ha)
- He never promised our call in life would be easy - but that
he would give us the grace to endure….I know that it is through
Him that I do what I do - there is no way I could do it without Him.
God Bless,
Renee Harris and Family
 
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