 
Jon-Jon's New Bed New Bed Closed
UPDATE: 7-3-05
I just wanted to let you all know that we signed our adoption contracts Friday,
July 1st and we are now awaiting a court date. We have a very busy month -
Rilea leaves for camp, their cousins are coming down for several days and then
they are going back to Atlanta with them. We have asked the adoption
specialist to see if she can get us in on the 22nd of July. I am sure I will know
some time later this week when we are set and I will be sure to get the
announcement out!
On another note - I would like to share how very upset the devil gets when we
try to take one that he was hoping to claim. This all became very clear to me
when we adopted the first time - as we approached that adoption date i
seemed all h#&% broke loose. Let me tell you how he has tried to discourage
us this time..... 2 car accidents this year, one for me and one for Michael, our
air conditioning went out and had to be replaced, several of our appliances
have gone out, the refrigerator, microwave and the trash compactor. How
ironic that we signed Kaden's papers yesterday and last night my washer died.
It is a new washer (14 months old) and to the best of my knowledge no one
will be able to service it for 2 to 3 weeks....well the devil is a liar and I am
believing that the service center will be able to repair my washer on Tuesday.
I am in no way giving satan any credit as he would do all he could to steal my
joy - but he did not give me my joy and surely, he can't take it away....
I think it is just so amazing to be able to see the warfare and know that we
are more than conquerors. Satan is a liar, he can not claim Kaden any more,
Kaden has the opportunity to live a victorious as he is washed in the blood....
oh, gonna preach myself happy :)
Renee
UPDATE: 6-27-05
Yep it is me again - I would like you to pray for Mikayla as the Lord leads - She
awoke this past Monday morning VERY early and I passes it off as excitement as
she was leaving for camp. She return this past Friday looking very worn out and with
a nasty cough. I took this lightly as I assumed she was worn out from camp. When
we got home Friday she showered and went to bed - when I went to check on her
later she had a fever of 100 - 101. I was concerned and found out then she had been
sick all week at camp, but was determined to have a good time. We could not keep
her fever under control and she slept pretty much the entire weekend. I took her to
the doctors this morning and she has pneumonia!
She is very week and very tired - she is also coughing terribly. He prescribed her
some antibiotics and some expectorant and told her to drink as much fluid as possible.
Mikayla NEVER gets sick other than the occasional runny nose/sinus infection - please
pray that she is well soon - she is my right hand lady and I need her to help me run
this household....!
Renee
UPDATE: 6-24-05
Just wanted to let you all know that we will be signing our contracts on
July 1st for Kaden and then it is just getting the court date set to make
it truly official - and then Kaden will be truly a Harris! I am so excited
to finally be at this point.
Both of my boys have been given to me through adoption - and I could
not be any more blessed - they are both such amazing kids - in spite of
their issues. We have suspected all along that Kaden had some issues
and some of those have been addressed and he is receiving intervention
or has had the issue resolve (his plagiocephaly and his thumb adduction).
Some issues are still prevalent and other than God's grace will not go
away. Kaden is a precious little fellow - I may be biased, but he is really
a pretty little boy. He is struggling though with some things that I would
like you to be in prayer about as the Lord leads. Kaden still says no
words and really has little to no intent to speak. He does not point to
objects, pull me towards things or really even grunt or make sounds to
show what he needs. Now he will let me know when he wants to be
picked up and he will flap his hands and smile when he likes something
(a video, bubbles). Other than that there are only some limited
consonant/vowel sounds. Kaden has been in therapy since he was a
bit over two months and all of his concerns have been addressed with
his therapists as well as his doctors.
Although we have had are suspicions, it is always difficult when the
reality hits you in the face... the other day when we were at the doctors
is when that reality hit. AS we were getting ready to leave, I looked
at the medical form that you use to check out and there it was, in black
and white, Pervasive Development Disorder. PDD is a "label" right
below Autism. It is a spectrum disorder which simply means no two
children diagnosed would be the same. In Kaden's case he has huge
gaps in his development. He is on target and even excelling in some
areas but is lagging in others. Some would pooh-pooh me for "
accepting" this label - but for me - it allows me to research and
understand what I can do for Kaden. In this world some things
are just facts - Jon Jon is Autistic, and in all reality, so is Kaden.
Those are facts, it is what I live with, and it is okay. On the other
hand - I do not limit God's ability to supernaturally heal my boys,
nor do I doubt His ability to give me wisdom and grace to live
in the here and now.
I just wanted to share and ask that you lift our family up as the Lord leads.
It is a humbling experience to be chosen to raise children - and as that is an
awesome job - the call to be a special needs mom is even greater.
Renee
UPDATE: 6-18-05
Hey you all -
I am just settling in after a day at DollyWood - all things considered - we had a
great time. Such a great time I exchanged my one day passes and bought season
passes for this year. I appreciate all your prayers - Jon Jon and Kaden did great
(again, all things considered) and the girls had a good time.
On a bad note - my van is still not done and the insurance stopped paying
for my rental as on Monday. Please pray that I get my car Monday and
that the dealership will some how pick up the tab, as it is their fault that my
car has not been done in a timely fashion!
Thanks again....
Renee
UPDATE: 6-16-05
Hey Guys -
Just wanted to let you know that it is one month and 4 days since my accident and I
still do not have my van :( There was some work done on it that was not done well
and several areas need touch up. Please pray that I will get my van back soon, that
it be perfect and that I will not have to pay one penny for all these delays!
On an exciting note - our local Christian radio station has been giving away free passes
to DollyWood in celebration of Kid Fest and the release of the new Veggie Tales movie.
Well, believe it or not my daughter Mikayla won us four tickets!! She and her sister
were so excited they could barely contain themselves. She had used her cell phone
in the car on the way to church this evening....all I can say, it was a good thing we were
stuck in traffic as they both screamed so loud it frightened me!
So this Friday I will be packing up the boys and the girls and heading out to DollyWood.
Of course, I am going to ask for prayer for Jon Jon and Kaden. The girls will want to
ride everything and since there is such a difference in the boys ages and abilities and
theirs, it could make for a long day - plus with this hot humid weather....
I am just asking that you will believe with us for favor and the we would all have a
good time and that Jon Jon would not have any meltdowns and that we would all be
able to handle the heat. I want so much to be able to do things as a family and be
able to allow my girls to enjoy the things the Lord has blessed them with. It is situations
like this that can be most draining on us all - as I want to try to accommodate them all
and always fall short. I know how difficult the boys can be and I also know how
quickly thing can go awry - and I just so want to be able to have a really good time.
Please pray that God's favor would be with us!
I will keep you posted...
UPDATE: 5-25-05
Hey You All -
Just thought I'd send out an update to keep you all up to speed.
Jon Jon is still very gunky and is struggling with all the drainage, but is in good spirits.
We recently saw his new pediatrician regarding his self abusive behaviors and we
decided to up his Zoloft and see if that helps any. He did real well for a few days
(even with going away), but today he started hitting himself again and I ended up
having to restrain him during therapy. We will keep going with the meds for a bit
more as we have had so much going on that Jon may just be having a hard time
with it and with not feeling well, well you just never know.
On another note, Jon Jon saw his physiatrist today and she has decided, basically
because of Jon's behaviors and inability to cooperate, that it would be best to drop
him from all his therapies for the next 4 months and then have him re-evaluated.
This is a mixed blessing, as we have been in therapy since he was born - for 5 years.
What will we do with all of our extra time? (LOL)
Renee
Either I forgot to send an update to you - or it got lost in the shuffle. We got back
Sunday afternoon from our weekend get-a-way. All things considered, Jon Jon did
very well. I was able to calm him down or redirect him before his behaviors got out
of control. He loved the aquarium. In fact the second day out we parked in the same
parking garage and Jon started repeating "fish, ocean, okay, please." Saturday we
went to Splash Country and we were there for over 6 hours, and Jon would have
been happy to spend the day. He loves "wa-yer" and got the biggest kick out of the
wave pool. Jon Jon did a lot of first this week-end and all in all handled all the transitions
very well. The only souvenir he brought back was a green runny nose.
Renee
UPDATE: 5-18-05
Hey Guys -
I have a different kind of request.
Last August, for 10 years of service, my husband's employer gave him a gift
certificate for 2 nights at a resort in Gatlinburg, TN that was good to redeem
for one year. That certificate has sat here, and sat here and sat here. I finally
decided, that we should take advantage of the opportunity given to us and
redeem the certificate. Our "weekend" away is this coming weekend. Our
weekend away includes all four children - the last time we went away, almost
3 years ago was disastrous, as Jon did not do very well with the transition.
We so desperately need some time away as a family - something we do not
do often - as often it is impossible. Please pray that all my children will adjust
well to the different routines and surroundings, that we will have good weather
and that we are able to do something as a family - we sooooo need some
together time. We have been going through so much and to be honest, I am
so not looking forward to this weekend as I know it will be so much more
"burden" (for a lack of a better word) on me as I will be the one left to deal
with it all and if things do not work out well, I will, of course, be the one that
feels guilty.
Jon is still having issues with his behaviors and he can get so agitated so easily .
I want so much to be able to get out there, in the public realm, and be able to
handle all that my children (Jon) can throw at me - but I am just so battle weary
I need my fellow sisters to hold me up.
I want to believe that I will report back in and tell you that we had a time of
refreshing.
Renee
UPDATE: 5-13-05
Rilea and I are still quite soar, but other than that doing well. The burns caused
by the air bag have just about dissipated. My knee must have hit the dash as it
is black and blue and very soar. My neck is very soar and extremely tender, it
feels as if my neck does not have the capability to hold up my head. My right
side is soar if I breathe hard, sneeze or cough and my range of motion is still limited.
Other than that - we are very thankful.
As far as I know there was over 6000.00 damage to my car. Although my husband
said until they start pulling it apart, and see the structure, they will not really know
the extent of the damage. It is my understanding that they have started work on my
van, please believe with me that they will fix my car to brand new condition and that
they will detail the interior (there is soda pop EVERYWHERE) to brand new condition.
I want my car as perfect as it was the day I drove it off the lot. I, unfortunately have
been in many accidents, and every time I have had my car repaired it has never
been right. I do not want to deal with that this time. I own my van, it is a late 2002
and if you know me, you know I have taken VERY good care of my car.
To make a long story short, please pray that my car will be returned quickly and
perfectly, that there will be no insurance snags and that we will not pay one
penny out of pocket expense.
I appreciate your prayers.
Renee
UPDATE: 5-11-05
Okay, Okay - we are alright but I am not sure exactly how much damage was
done to my van. Our refrigerator died this week and we have no refrigerator items -
had to throw out over three bags of food yesterday night. I told the girls I would
get them something for lunch. Rilea and I jumped into the van and went of down
the road to the fast food restaurant to get some lunch to bring home. On our way
home, a lady pulled out into our lane of traffic and did not see us, I tried to avoid
her and the next thing I knew food was everywhere , the air bags deployed and
Rilea was freaking out. Other than burns and being very soar - we are okay -
but my poor car.
A witness saw the accident gave her report and the older lady that hit us
admitted that she did not see us.
I am VERY thankful that I did not have my boys in the car.
Please pray that Rilea and I will not have an affects from the accident, that the
insurance claim goes smooth and that I get my car back in PERFECT condition
(hey maybe we can dream big and I can get a new car out of the deal - LOL)
I will keep you posted..... On a side note when we got home Mikayla told me
that my dad had felt a "premonition" that we were in an accident. When she
told him we were in an accident and fine he was overwhelmed, as he tried to
explain he felt like he knew we were in an accident. Pretty Wild!
Renee
UPDATE: 5-10-05
As the Lord leads - please pray for Jon Jon. He has been having a very difficult
time lately - having several pretty sever meltdowns each day that include excruciatingly
loud screaming and self abusive behaviors. I had tried to attend our home school
support meeting last night and Jon could not handle the transition of his daddy
putting him to bed and I ended up having to come home to help out. This morning
Jon Jon has some black and blue marks around his eyes. His favorite place to
"injure" himself is his face. He looks awful today. As if the abuse to himself is
not enough - his eyes are very sensitive and as we only have one "functioning"
eye that we are trying to protect, his beating and punching at them is not very
productive.
So far today he is doing better - but unfortunately, we haven't done much. We
have therapy today and that inevitably causes several sever meltdowns.
I want to believe God will intervene - in the mean time I am dealing with a little
boy who is angry/upset and has no way to express himself other than to scream
and hit. Please pray that God will surround Jon with peace.
Thanks in advance.
Renee
UPDATE: 5-9-05
I am sending two attachments - both are pictures of the birthday boy
 
UPDATE: 5-7-05
I wanted to thank each of you for your words of encouragement
and well wishes for Jon Jon on his special day.
Every year I send out some sort of post in honor of his special
day and it is such a blessing to get so many responses back. I
wanted to let you know that I cut and paste the responses on to
pretty paper for his scrapbook. He (and I) will have all those
well wishes for years to come. What a blessing for Jon to see
that God's people care so much for him.
Thanks again - Jon Jon had a great birthday. The birthday
boy enjoyed "helping" with the balloons, and he really enjoyed
his presents this year. He painstakingly open each one....
slowly...always commenting something along the lines of "
ooooow, what's that", or "Woooow, look at that". He is so
silly. He enjoyed each of his presents and managed not to
get overwhelmed - that is of course until Kaden touched his
balloons :) But all in all, he enjoyed his celebration and
managed not to have any meltdowns....it was a truly blessed day.
On an added note - yesterday was the last day that Kaden's
birth mom could file an appeal - and to the best of my knowledge,
she has not - so we officially start the adoption process.
Kaden has been in our home since he was three days old and
he will 14 months old on the 8th of this month. I will keep you
posted on the official "Gotcha Day".
Renee
UPDATE: 5-4-05
Tomorrow is my favorite day of the year - as May 5th is the
day we celebrate my son Jon's birthday - Jon will be 5 years old.
Of course, everyone's birthday is special - but Jon's, for
us, is extra special. Five years ago, a tiny 2# 9 oz. baby
boy was born to a drug addicted mother. In spite of a host of
medical intervention - the chance of survival was slim.
Abandoned by his birth mom - Jon remained in the NICU for 4
months while the nursing staff became his surrogate family.
The staff did all they could for Jon, but for three months
there was no outside contact and Jon was slipping fast - on
top of 13 diagnosis he already had, they had to add failure to
thrive as there was no one to care for Jon. At 3 months of age
he was put into State custody and on August 1, 2000 we were contacted.
The prognosis was grim - if he made it to his first birthday
he would spend the first year in and out of the hospital because
his lungs were so severely damaged at birth. If he made it
past his first birthday, little would be expected of him - he
wouldn't walk; and if he did it would not be without assistance -
he would be blind due to the retinopathy of prematurity he
experienced - he may be dependant on supplemental oxygen - he
would not have much upstairs - he could be wheelchair bound -
basically not much hope was given.
How devastating I thought.
"Would you take him?" they asked.
I was thinking as they were talking - as a home schooling mom
of young children, how could I possibly take on such a task -
they were asking a lot - and to be homebound with him for 6
months to 1 year - are they nuts?
"What is his name?" I asked
His name is Jonathon.
Silence.
I could only remember the dream I had about three years earlier
when we started our fostering adventure - I had dreamt of my
son....his name was Jonathon!
We were allowed a few days to think about it - and of course
I sought the Lord in prayer and had others to do the same.
On August 8th, I arrived at the NICU and fell in love with my son.
It would be one more month of intervention before he could
come home, and on Sept. 5, 2000 at 4 months old, we welcomed
Jon into our home.
Although it has taken 36 procedures/test/surgeries, countless
doctor appointments, hours upon hours of therapy, tons of
research and education, Jon Jon has overcome the odds. He
is walking, running and climbing on his own; he is no longer
O2 dependant and has not had any lung issues in 2 years; and
although he is operating on approximately a 2 year old level -
he continues to progress, albeit slowly, but slow and steady
wins the race.
It would be impossible to explain all that Jon, and us for
that matter, have been through in the past 5 years - he has
almost as many labels as letters in the alphabet! However,
every day I rejoice at God's grace and mercy - everyday I am
part of a miracle - they do happen - I know, without a shadow
of a doubt.
Rejoice with me, as Jon Jon celebrates yet another year of life.
Happy Birthday Son.
Renee
UPDATE: 5-3-05
Hey Guys -
I want to thank you all for covering our morning in prayer; Jon
Jon did GREAT for his sedated eye exam! He allowed me to put his
bracelet on with very little resistance, did great while we waited
and he didn't even realize he was transferred to the operating
room/ When they brought him down from recovery, he was compliant -
but very ready to go home. Since he was such a trooper and he
behaved so well, we were able to stop at the store to pick up a
new video, which he is currently enjoying!
As for the doctor report - his right eye continues to present with
a lot of calcification so it was difficult to see very much. To
the best of our knowledge, there has been more damage, although he
continues to present with retinal and choridal detachment and his
inoccular pressure is at the high end of normal - 15/16. Dr. G is
not sure if Jon is seeing any light differences in that eye - so for
now we will continue the eye drops twice a day.
His functioning left eye has weakened a bit more and he is now at
about a -14 for his myopia and his pressure in the eye was also at
15/16 - a little on the high normal side, but well within the normal
range. I will order Jon some new glasses in the next few weeks and
we will go from there.
At this point, we will continue to treat Jon Jon with the meds
prescribed and with an EUA about one a year until things change.
The thing that would be most beneficial would be Jon's ability to
tell us what he can see. A little disappointing, as Jon Jon will
not be able to do that for some time, if ever. Until that time we
will rely on scientific guesses at to what they say Jon Jon sees.
If any one has met Jon - they will know that he has fully accommodated
his visual impairments. God is gracious.
Again thanks for your prayers.
Renee
UPDATE: 5-2-05
This could get long - so I apologize.
First - Jon Jon needs an eye exam and unfortunately, the
only way to do that is to have him sedated. We have an
appointment at Children's tomorrow to have this done - it
is called an EUA - exam under anesthesia. This is really
not a big ordeal in the sense it takes literally minutes to
perform the procedure - but getting Jon admitted, up to the
room, changed, having to wait, and then to have him taken
from me to be sedated is upsetting for us both. Jon Jon has
spent a LOT of time in the past at the hospital and when we
get there his memory never fails him and he looses all control.
As he has gotten bigger and stronger, it takes much more out
of me to try to keep him in control. The idea of the whole
day is nerve wracking for me - I am full well aware of what I
am in for and I truly do not know if I have what it takes to
do this.
The other issue we are having is Jon is not doing very well
his behaviors. I, fool heartedly, took another placement on
Tuesday. Little "A" was a precious little soul - almost one
year old and a very good boy. Unfortunately his presence here
set of Jon (and Kaden for that matter). Jon Jon was completely
out of control - screaming for long periods of time, having
temper tantrums/meltdowns, banging his head into the ground
and ripping at his face. It was pitiful to watch him be so
stressed and unable to get it together. By Friday we had to
have little "A" removed and placed into another home. Today
is Monday and Jon Jon is still struggling - getting out of
control at the smallest infraction or for really no reason
at all.
Jon Jon is usually such an easy going little fellow - change
has always been an issue for him - but it has never reached
this magnitude. I am not getting any younger or stronger -
yet he is getting tougher to handle and control. Adding in
our EUA tomorrow may be more than I can bear.
Please pray that God would comfort Jon Jon's mind - Jon is
truly struggling - and to be honest, so am I. I want only
the very best for my little man - he means the world to me -
I hate to see him suffer so. Autism is a thief.
Renee
UPDATE: 4-23-05
Kaden seems to be doing better. He still has loose stools -
but they are not as frequent, however they still carry that
rancid odor. He is still a bit whiney and fussy - but his
appetite has picked up some and he is getting hydrated. I
am sure we are on the mend and at the tail end of this virus -
thank goodness!
He was fitted for his foot brace - and we should get it in a
few weeks. His functional vision test went well - but I have
a feeling we will be referred to an actual medical doctor for
a more thorough assessment. I will keep you posted on that.
On a side note - Jon Jon is having some issues with retching
and vomiting again. I do not think he has roto as it is not
violent vomiting and it is not a lot coming out. I think it
is more allergy related - either way, it just breaks my heart
as Jon Jon has such a hard time getting it all up and retches
for quite a bit before he can get it up. He is also having some
issues with sleeping through the night. Jon Jon has always been
a good sleeper - but of late he is up 2 - 4 hours a night and it
is wearing me out. I have no idea what has changed that is causing
him to have such a difficult time staying asleep.
Renee
UPDATE: 4-21-05
Whew - we are doing much better today. Kaden drank some juice this morning,
had a small handful of his Gerber Stars, took a small bite of my sandwich
and a bite of my chip - and then he choked and puked! It really was not as
bad as it had been. At 8:30ish - I went to Baggett's to get his Zofran - it
was a bit of an issue as they had to get it from another pharmacy and they
were concerned about the dosage in one so little. They know me well enough
to know I would be watchful and would not abuse the medication :)
When I got home I gave Kaden a half of a pill - it is a redi tab - dissolves
instantly - but apparently not instantly enough - he did not like it - but
Mikyala and I got it in him. He kept what little bit he took in this
afternoon down. He is still is not taking in enough liquids and only had a
few bites of a cracker this afternoon.
He has taken two naps today - the first one being at about 11 for about an
hour and the other one started at about 3ish and he didn't get up till after
5. I talked to Dr. R's office and the sleepiness is to be expected - but I
need to push more liquids. I am doing all that I can - he has just become a
bit averted, as he surely thinks he will vomit if he takes a drink.
This evening we tried a milk bottle - but not before we gave him another
half dose of his Zofran - we took it slow, much to his dismay - but over a
period of time he took about 9 or so ounces and so far has kept it down. I
believe we are on the mend!
Our orthotic company will be here tomorrow to fit Kaden for his Sure Step
foot/ankle brace. He has to wear it on his left foot when we get it. He
also needs to wear an ankle weight - but I never did ask Dr. W what weight -
and wouldn't you know she is out till the end of next week!
Also, on Friday, one of our early intervention services will be here to do a
functional vision test on Kaden. The lady that is coming out has worked
with Jon in the past and she hasn't been with us since Kaden was itty
bitty - so I am looking forward to seeing her Friday and getting her input -
she is a great lady.
Thanks for all your prayers and for listening to me ramble -
Renee
UPDATE: 4-20-05
Yep - Kaden has Roto Virus.
We got to the doc's about 2:15 and after vomiting in their waiting room
they got us to a room and after 3 poopy diapers and vomiting
all over their floor - the smell alone would confirm Roto Virus.
Dr. R gave him a shot of Zofron? and it worked miracles.
As we did not get out of their till five - it was too late to
get to our pharmacy so we went to another one - only to find
out his insurance would not cover 12 Zofron tablets (at $253.00)
without prior authorization.
We tried to get a hold of the office and everyone was already
gone. I called our pharmacy and asked what I should do - as
they would be closed by the time I got across town - there was
nothing they could do to help. I called my husband and we
agreed we would just pay the money and pray that the insurance
would reimburse - as a pre- authorization could take 2 to 3 days.
On the way home the nurse from Dr. R's office called my cell
phone and left a voice mail that she called and got pre-authorization
and changed the amount of pills - as only a 30 pills could be
covered and called it into our pharmacy. Amazing!
I will be at the pharmacy at 8:30 tomorrow morning when they open.
Please pray that the Zofron shot Kaden received today will work
until we can get his pills. He has been able to at least hold
down a little liquid....He has lost over 1 pound already - which
the doc said is 5% hydration - mild to moderate - and that he
can not afford to loose any more. Also, pray that this will NOT
make it's way through the house!
I will keep you posted .
Renee
UPDATE: 4-19-05
Hey Guys,
Okay - you sick of hearing from me yet? Kaden seemed to be
doing well yesterday - with just a slight case of the duns.
We opted to go out on the deck and get some air and he enjoyed
eating some Nutter Butter's and drinking his juice. He ended
up taking a VERY late nap - so while he was half asleep I fed
him his milk bottle with his allergy meds in it, as I always
do. He seemed in good spirits and went off to be at normal
time without a hitch.
He had a hard time staying a sleep, awakening often and having
a hard time getting comfortable. As this is how he always
sleeps, I thought nothing of it. I went back to the boys room
around 4 to administer Jon Jon his meds when I was greeted at
the door by the overwhelming smell of vomit. Kaden had vomited
and fallen asleep. It was mostly at the foot of his crib - so
I covered it with a blanket and moved him up. I know pretty
gross - but he was finally asleep and I was exhausted - I will
use this as my entry to the mommy of the year club!
Any how - 2 hours later we are up and bathed and ready to go.
Mikayla gave him his morning bottle and he was doing fine - I
figured he was doing better, but then he vomited all over the
carpet - upstairs for another bath.
We called the Pediatrician and have an appointment for this
afternoon - so we were going to go drop Jon off at therapy and
sit in the car till he was done and then go off to the docs.
Well 15 minutes into the drive Kaden vomits all over himself
and the car seat - ee gad the smell is raunchy. We turn around
and come home clean him and the car seat up and he just continues
to vomit up bile and stuff I never saw before - he has had 4 baths
today and I was able to find another car seat to use as I had to
hose down the other one from the smell. I pray we can get to the
docs without incidence and I will keep you posted.
Please pray for my little one to feel better and to regain his
appetite - also pray fervently that this does not make its way
through the rest of the family. (I would love to loose a few
pounds - but I will go about it another way thanks LOL).
Renee
UPDATE: 4-17-05
Hey Guys -
Just wanted to let you know that Kaden seems to be over the
vomiting - but not over the diarrhea.
Last night he started screaming and I just figured he was
hungry and offered him his favorite Gerber Stars - He took
a handful and jammed them in his mouth. I took him to the
kitchen and placed him in his high chair where he ate some
more stars and then a piece of pizza crust. Shortly after
that he had fallen asleep for the night.
He is still very warm and dealing with a raw bottom. He took
his morning milk bottle with no problem and has already terrorized
the front room. He is still a little lethargic and a tad too
whiney for me. But it appears that he is not vomiting and that
was the worse part.
Prayerfully he will be feeling much better this evening.
Thanks for lifting up my little one - it has been a week!
Renee
-----
Hey Guys -
Kaden is still not well - he can not keep anything down - and
has only taken some juice - he will not take a bottle. He
also still has some pretty nasty diarrhea. He also now running
a temp of 100 or so. He has not moved from the blanket on the
floor, other to be held and rocked - he is VERY lethargic and
extremely pitiful.
He has taken 3 or 4 baths today because he has vomited on himself.
We have steam cleaned several parts of the carpet and have done 3
FULL loads of laundry.
Please pray that he will be able to get some nutrition and start
to feel his old self again very soon.
Renee
UPDATE: 4-16-05
Please lift Kaden up today as the Lord leads. He woke up
with diarrhea in his diaper this morning. I didn't think
much of it so I changed him and went on to feed him his morning
bottle. Right in the middle of eating he started to vomit.
I took him upstairs and bathed him and he vomited again. Once
we got him downstairs, he had the chills and vomited again.
He is sleeping now and does not have a fever. I am not sure
what is wrong with him as I do not even recognize what is coming up.
Please pray that he is feeling better soon.
Renee
---------
Hey Guys -
It has been a very long week - counting therapy appointments -
we have had 18 different appointments this week - and, for now
we have 14 set up for next week - it's been a teeny bit crazy
here.
Any how, Jon Jon saw his pulmonologist this week and he was
very proud of his progress. Jon has had no lung issues now
for several months (almost close to a year) and that is huge
progress for him. He will continue to see Jon every 4 to 6
months to keep an eye on him - but other than that, he was
very pleased with him. Oh - can you believe that Jon Jon
weighed 40 pounds on their scale - unbelievable - I never
thought we'd get there!
Okay - now for Mr. Kaden Man - whew, believe it or not, most
of the appointments this week were for him! We saw his new
pediatrician today and I was very pleased with him and his
staff - and feel like I made a good choice. (Our former
pediatrician closed his facility and we were 'forced' to
find a new doctor).
We also saw his GI doc this week and she felt he was doing
pretty good. Although he has remained the same weight now
for quite some time - she feels he is okay - he is 22 pounds
9 and 3/4 ounces and 33 inches tall! She felt like we were
doing all we could to keep his GERD under control, but if he
lost weight she would be concerned. She said at that point
we would start with adding Pedia Sure to his diet and see if
we could make up calories. For now though, she said we would
do all we can to keep him healthy and at least remaining at
the weight he is if not putting on a little bit of weight.
We also saw his Physiatrist today, Dr. W. It was a quick
visit, filled with a lot of information, so much so, I am
not sure if I will get it all right. She believes that
although Kaden passed a hearing test that he is "auditory
processing deaf" - he is not processing the information he
hears like you and I would, it is very possible that he is
only hearing partial information or that the information is
getting scrambled and not making any sense. She made some
suggestions as how we can "treat" him to help him understand -
but we will wait until she and the speech therapist have
their meeting before we start any formal treatment . (In
turn the speech therapist will explain everything to me
in plain English!)
She also ordered a foot/ankle brace for his left foot and
an ankle weight to correct his leg. Kaden has some issues
with turning his foot in and being very clumsy.
She also suggested some sort of apraxia or dyspraxia - this
is where I lost her - I will have to get more info later
next week on this as I did not understand this at all - being
our 18th appointment this week - I just couldn't keep focused.
The "praxia" thing has something to do with motor planning
and coordination - but I really did not understand .
She is also trying to set up a different type of hearing test
that measure something the ABR did not - so I will have to
keep you all informed -
For now, I am headed of to bed, as it has been a very long
week and next week does not look any better....
Renee
UPDATE: 4-13-05
Update:
Hey Guys -
We just got back from the ABR with Kaden and he did great. In spite of not being sleep deprived, he responded very well to the medication and the audiologists were able to perform and complete the tests. Also - for being very hungry this morning - he handled that well too.
The test show that Kaden has no mechanical hearing impairments. When I called his speech therapist, she was shocked, as it is evident that he is not always hearing and his speech is greatly delayed. After talking to the audiologists and the therapist we are guessing that it is his sensory issues that cause him to block out sound, and that is why he seems to respond intermittently to sound. I will talk more to or Physiatrist on Friday when we see her and get a plan of action from her.
Thanks for all your prayers -
Renee
Just wanted to let you all know that Kaden goes for a sedated ABR today. It is an exam in which electrodes are placed on his head and they measure brain waves to check his hearing.
The "sedation" works better if Kaden is really tired - they require me to get up at 2 AM with him and then ask that he does not sleep in the car (a 45 minute drive) on the at there. I do not have to be there till 8:45 AM. Um, I can guarantee we will not be up at 2 and even if we were, Kaden would sleep in the car on the way there. He also will not be able to have anything to eat or drink in the morning - and Kaden wakes up "starving".
Please pray that in spite of our "negligence" that Kaden will respond well to the sedation and that they can perform the test and that we will get a report that is acceptable and that he will be calm with nothing to eat or drink in the AM.
I know perfect hearing will be the ultimate goal - but I need to know why my son does not respond to noise consistently like he should. There is nothing more frustrating than having a test done and then not getting an answer.
I will keep you all posted...
Renee
UPDATE: 4-12-05
Hey Guys,
Just wanted to let you know that Kaden's birth mom - had
her "Good-Bye Visit" yesterday. She and her mom were there and they
brought Kaden all his birthday presents and his Easter basket. Some
of her choices in gifts were questionable - but others were good.
Kaden, unfortunately was not interested in anything and did all he
could to be on my lap or running away!
It was a sad appointment as she knows that he is in a good place,
and although she has decided to appeal the termination, she knows
he will not come home. They hugged and kissed him, told him to be
good and let him know that they loved him very much.
She and I talked for a little bit after I got Kaden in the van
and she realizes that she can not provide for him and that she will
more than likely loose the appeal. I agreed with her that she needs
to do all she can to make her self feel good, and if filing an appeal
with make her feel like she has done all she can - than so be it. I
did try to minister to her - but I am afraid it fell on deaf ears.
Her heart was so broken. We hugged - and she hugged and kissed her
son, one more time - and we left.
She is a very hurting young lady, she has lost all 6 of her
children, basically because she is unable to care for them,she has a
hard time caring for her self, it is more a mental issue than ignorance.
Please lift her up - as she has struggled so much.
Love - as always -
Renee
UPDATE: 4-7-05
Hey Guys -
Yes - God is good and the termination has been granted.....
I arrived at court at 9 only to be told that the state's attorney will not be arriving till 10 and by the time she arrived our case wasn't heard till about 11:30. The judge sure did take a lot of recesses and I even had to testify - talk about nerve wracking. Any way the termination was granted and Christie has 30 days to appeal and if she doesn't on the 5th of May (Jon Jon's 5th birthday) the petition will be filed, the state will be awarded full custody and we will continue with adoption! I am just so relieved that this part is over. Kaden will be joining our family as our second son and the last of four and will be joining our family as Kaden Nicholas.
As for Kaden's ears - one of his tubes is clogged and since he was so uncooperative we are in the process of setting up an ABR (sedate exam) to check his hearing.
As always I will keep you posted and covet your prayers.
Renee
UPDATE: 4-3-05
Hey Guys -
This is a general email to several people and lists - so I apologize for the length.
Just wanted to let you know that we have yet another court hearing on Tuesday the 5th. Once again, we hope the judge hears and accepts the plea for termination of Kaden's birth mom's rights. Up to date, Kaden being in care almost 13 months, she has not followed through on her permanency plan, and DCS has sufficient grounds for termination. Prayerfully, it will be heard, granted and Kaden's birth mom will not appeal. She has 30 days to do so - in that time DCS will continue with adoption plans and if she does not appeal they are hoping to finalize sometime in June!
Also, on Monday we will be taking Kaden to the ENT has there is reason to be concerned about his hearing. Several of his therapists, along with Michael and I, feel he may be suffering from slight hearing loss. It is not a big issue for us, we just want to be sure. I am praying that the ENT can evaluate Kaden and let me know immediately what we are dealing with. It may be something as simple as too much wax in his ears or something much more complicated - either way - we just need to know and I do not want to have to wait weeks for tests - I just want to know. (With the court hearing on Tuesday, it would really be important to know what every one involved is dealing with).
Okay - one more request. As you may or may not know, Jonathon has been under our care since 4 months of age, we have had some respite care nurse hours available, and in the past we have utilized them. We also have had services from our local school available and we have used them also. At present, Jonathon is receiving all of his therapies, twice a week and we are using a private facility to receive those. Some difficult behaviors come with being autistic, and up until this point we have been able to handle them, well, I should say I have been able to handle them. Jon Jon's care falls, pretty much, solely on me - which is really not that big of an issue, other than his care is very demanding and I can get pretty tired out. At the same time, I want to be sure I am doing EVERYTHING I can for my son.
Okay all that to say, I feel as if though I am being pressured to find "more help" for Jon; a program that will offer much more structure - the structure that "autistic people crave." I do not want to make a fool decision and want to be sure that I have exhausted all other avenues, as a home schooling mom, it is difficult for me to think that I can not do right by my son. Our resources where we live are VERY limited to say the least and there are not many programs/schools to place Jon. I will be visiting one of our "options" within the next two weeks.
The other Sunday, Pastor had commented that some one was making a decision and he asked that they bathe it in prayer - I felt a check in my spirit and felt, for me, it was regarding Jon's "schooling". Please just ask God to make it PERFECTLY clear to me.
As always, I would appreciate your prayers and I will most definitely keep you all posted. Also - as a side note April is Autism Awareness month -
UPDATE: 3-22-05
Update:
Well - our DME - the company that supplies us with Jon's enteral supplies has contacted me and apparently Zevex is sending me out a brand spanking new pump; I should have the pump by tomorrow. Our DME said to try the new one out and we will take it from there.
Zevex has a great pump - as I have said, especially when it comes to portability - hopefully a new pump will solve the issue. I will keep you posted.
Renee
Okay - this may seem like a really silly request - but I need something for Jon.
As you may or may not know Jon Jon is completely g-tube dependant and is fed through a feeding tube, in which we use a Zevex pump to administer his feed. About a year ago, I fought like crazy to get this feeding pump as it is the only one that is so portable and can deliver at a pretty high rate - which would mean little to you all - put it is crucial to us.
In December I started having some "issues" with the pump acting up and got it replaced; and consequently have been through three pumps since then.
Each time the pump "acts" up, it delay's Jon's feeding time and at times has stopped working completely which means I have to bolus feed him (attach a tube and a large syringe and gravity feed). When I have to bolus, it takes some time and it is very difficult for Jon to sit still, and inevitably he ends up vomiting because I can not control the rate at which the gravity feed is going in.
Okay - all that to say that I need our DME (the company that provides our services) to find me a comparable pump, or I need Zevex to stand behind their product and get me a pump here ASAP as Jon's pump is acting up yet again...
Renee
UPDATE: 2-22-05
UUUUGGGHHHH - does that say enough?
We have another court date set for April 5th!
UPDATE: 2-17-05
Well - it is official - Kaden is a STARband graduate. He actually stopped wearing his helmet on the 9th, as we were having some issues with it leaving his head purple, and apparently, we are also having some issues with psoriasis or eczema on his scalp. Any how - after consulting with the doctor and having the orthotist out today - we have decided that although his head is not perfect - we received great correction from the band and it is now time to love on his little round noggin!
Also, Jon Jon's Vail bed was delivered today. I thought they were just delivering it, and that we would get it put together this weekend and kinda ease into the whole transitioning thing. Well, I was wrong, they delivered it this morning and set it all up. It has taken us the entire day to rearrange the boys room to accommodate Jon Jon's new "big" bed and to get everything organized. We had to take some other furniture out of their room and many of the toys, so, although their room looks great, the rest of the house is a disaster!
When we got it all together - we had Jon Jon come up and check it out - he seems pleased with it - but the real test will be this evening.
Please agree with me that this would not stress Jon out and that he will accept and enjoy his new bed and that he would get a good nights sleep.
Kaden Helmet Free
Okay - I know you must all be sick of hearing from me - but we have yet another court hearing regarding Kaden's future, scheduled for Tuesday, the 22nd.
The good news is - the birth father has the intention of surrendering his rights that day. The birth mom, however, is determined to get her "baby". The concern we have is another continuance will be filed as she has been unable to meet with her lawyer and no one here likes to do terminations.
Visits have stopped for now, haven't had one since the 21st of January! Weekly visits are to continue - but she has no transportation at this time - so we haven't had to do visits.
Please agree with me that a continuance will not be filed and that the hearing will take place and a termination will be filed.
I will keep you all posted.
Renee
 
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