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Santa Fe Springs,
California (CA)
| "Our son Stephen is the
Joy in our would and he is perfect in our eyes and we would not give
up any of this experience easy or hard for anything on this earth,
like all of our children he is a blessing to us and our family and
we are honored to be in his life!"
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 December
2009 Update on Stephen;
Our little man will be turning 4 in July 2010 and is doing great,
gaining weight and growing he has been between 40 and 45 lbs and he is a
little over 3 feet tall. He is showing great urges to sit and stand and I'm
sure he will be doing those things on his own in no time, he says "mama" and
love to hear himself yell or as I say "sing" he is still the happiest little
boy I've ever seen, always smiling and very lovable.
Stephen heart condition is stable with only very little signs of enlargement
but no distress . As a result of Stephen's surgery to remove tonsils and
anodes and a great sleep doctor Stephen has been sleeping about 6 hours thru
the night which is great! Stephens eye surgeries did not go as well as
doctors excepted therefore not allowing for the cornea transplant but in the
last few months he has showed a lot of progress and the doctors think eye
glasses may stimulate more growth so we have a appointment to have him
fitted in January. All of his conditions have been under control and he has
not been hospitalized in the last year, we are very happy and thankful for
that.
Stephen is currently on Christmas Vacation from his school like his big
sisters. We are so grateful for our school district everything is going
well, a teacher comes to our house twice a week, a therapist comes once a
week and we now have a full time nurse whom we love she is a life saver, We
have been sleeping like a bear catching up on almost 4 years of little to no
sleep it great!
Thank everyone for their concern, thoughts and prayers and I will try to
keep the good news coming,
The Fox Family;
Steve, Valerie (the luckiest parents ever) Belle 8, Casondra 17, and Stephen
2 1/2, full T-13
 April
2009 Update on Stephen;
He is doing well, gaining weight and growing he has been between 32 and 35
lbs and he is 82cm, he will be turning 3 yrs old this July , wow time goes
fast!
Stephen is scheduled for another heart echo in May, his doctor is keeping
close watch on him. As a result of Stephen's pulmonary issues he was
diagnosed with Sleep Apnea and on 5/15 we will be heading in to have his
tonsils and anodes removed, this should give him better air passage. We are
still being considered for a cornia transplant his eye doctor is monitoring
his healing from the last surgery and so far so good. All of our little mans
conditions have been under control and he has not been hospitalized for
about 6 months now (beside routine procedures) we are very happy and
thankful for that.
We are getting ready for the transition to our public school district and
I'm very hopeful all will go well we have a lot of help from our local
agencies and I'm looking forward to my little man starting a new
adventure!!!
Thank everyone for their concern, thoughts and prayers and I will try to
keep the good news coming,
The Fox Family;
Steve, Valerie (the luckiest parents ever) Belle 8, Casondra 16, and Stephen
2 1/2, full T-13
- - -
 2/09
Update
A recent heart echo revealed congestive heart failure (which some people can
be in for years)his heart is slightly enlarged and his left ventricle
ejection flow is less then a year ago so his doctor put him on a higher does
of a diuretic, water medication since that is what was causing the tiredness
and he added a protein mix to one of his feedings daily since he also had
some weight loss (he is getting tall) this should help with his energy level
the also upped his seizure meds since he had been getting a little more
episodes then normal and that has really help, his doctor suggested I see a
pulmonary specialist which I did and they ordered a xray which showed
Stephen has Chronic Lung Decease, which is being managed with new medication
and therapies.
On 2/17 Stephen had his second eye surgery and all went went well, Thank God
for our doctor, his plan was to remove the oil bubble from the left eye(1st
surgery) and remove cataracts and PHPV (cloudy fluid from behind the eye)
from right eye but after looking at his eyes under anesthesia he decided not
to remove the oil bubble and try again in 3 months but in the other eye he
removed the cloudy fluid from his eye then he removed the cataracts and well
doing that found out he had a mass attached to the pupil and he removed as
much as he could and when he did this he was able to create a larger pupil
for Stephen which will let in more light (sight) which then qualified him
for a cornia transplant and as long as he recovers well from this procedure
we can schedule the transplant in 3 months which in turn qualifies him for
other eye procedure.
We also had several tests and xrays to help figure out his sleeping patterns
since they have not been very well since birth and he seem tired most of the
time and the doctors did find out he has Apnea (episodes of him not
breathing well he is asleep) and they have scheduled a procedure to help
with that, we are just waiting for him to recover from his recent surgery
first.
Well this year has started off with a bang as you can probably tell but with
it has come some great memories, my little man is getting bigger and a blast
to play with he is so loving and a big ham for attention, he is getting
stronger and him just being his self is our inspiration it is plenty to keep
a smile on our face and in our hearts, there is not a day we don't thank God
for our sunshine and there is not a second we don't enjoy him and feel like
the luckiest parents on earth God has blessed us with three wonderful
children and we believe we would be missing out if anything was
different!!!!!
Thanks
The Fox Family
Steve, Valerie, Casondra,Isabelle and Stephen Fox
- - -
1 2-13-08
Hi everyone hopefully you are all well. Just a little update on
Stephen(12/08) He is doing good. We had our 2nd follow up with the
optometrist and he explained this appointment might be a little
disappointing since he suspected Stephen's eye might have created scar
tissue around the procedure site since there was so much of it already there
but to his surprise after he examined him and even asked two other doctors
to come in and check, there was no scare tissue. We will go in one more time
to check his eye next month, then schedule the same procedure on his right
eye. I do believe Stephen's sight has improved, he gets more excited when we
take him out side in the sun light and he is trying a lot more to open his
left eye, so I'm very happy, we just finished all his drops and ointments
for his eye and were able to take the patch off so I'm sure that makes him
happy, but he was too cute with the patch! He is getting older, heavier and
louder but we are loving it.
He recently had his urology appointment to monitor his Testicular Urinary
Reflux and according to the ultrasound it had previously went to his kidneys
on both side's but now it only shows the right side is effected miracle #2)
. We were also going to schedule a procedure to bring his testis down since
they never descended, which is kinda common, but with Stephen there is the
fear of other complications if they travel back up, so the doctor really
wanted to bring them down except we were worried about the stress of the
procedure on his heart but after an ultra sound we found out his testis had
dissolved which is uncommon but does happen this eliminates any
complications (miracle #3). Stephen received his hearing aids last week and
they are too cute, we had them on him for a short period of time since he
had come down with a bug and seemed kinda annoyed by them but the time they
were on he was so alert you could tell the difference, this make us so happy
since this will help so much with his development. we also had a few test
done to evaluate his gross and fine motor skills has improve from the last
test done 6 months ago he is now at a 8 month old level with the exceptions
to a few gross motor skills but I'm very happy with the results.
 Not sure if I had mention to you guys about the need for a special car seat
for Stephen but it was quite expensive, about $700.00, well I was not going
to be told no by insurance companies so I went on a mission and found a
group of doctors and medical professionals in Florida that grant money for
medical equipment, after a lot of paper work and all my doctors helping me
we got the car seat it arrived last week and boy is it worth it, Stephen is
very safe and comfortable (miracle #4) Stephen's heart conditions are doing
good - no progress which is great, his seizures on the other hand are
increasing but we have a great neurologist and we have them under control.
He has developed some reflux with his food but that is expected with his
G-Tube and we have a great GI doctor so it is also under control, Since his
surgery in September for his cleft and his digits he has kinda stopped with
his verbal expression and his hand play but we are working on getting him
back on track with a lot of therapy and thanks to his great therapist he is
doing wonderfully.
Thank you all for your prayers and thoughts and for just asking how he is
doing it means so much . I hope you all have a great Christmas and a Happy
New Year!
Please keep Dad (Stevie) in your prayers he has been sick (pancreas, and is
sick now) about 5 times in the last 3 months which means a lot of pain and
big weight loss I have been on the doctors about doing something more for
him but its harder then pulling teeth anyway we have made some progress and
thanks to a great family doctor whom we just love Stephen is starting some
new medications and more scheduled appointments to monitor him, our doctor
also did all the paper work to put Stephen on disability till 6/09 so that
is going to help out.
Valerie
- - -
 9-22-08
Hi everyone hopefully you are all well!
We came home yesterday (Saturday). We have great news, our little Stephen
has proved to be a miracle once again. There is so much to report but Ill
make it short and to the point. He has been recovering fantastic form his
procedures the doctors are amazed on how quickly he has healed and I have to
say based on how he was behaving his pain level seem good they had him on
morphine which really allowed him to sleep most of our admit.
The hearing test just came back and they did determine he does need some
type of hearing device which has already been scheduled for a fitting. I
have already noticed a big difference my son is totally reacting to much
more sounds then before he has been startled by noises that before did not
affect him at all, according to the doctors that was a possibility since now
their is a different sense of air pressure in his mouth and ears with the
closure of his pallet, he even sound different to me, he is still not to
vocal since I'm assuming his mouth is still sensitive but I expect he will
be trying out his new voice shortly , ill let you know which word comes out
first we have a poll it might be grandpa but for Stevie's sake I hope its
dada.
Here comes the GREAT news get a napkin since when I realized the meaning of
all this it made me cry okay after they did the ultra sound they discovered
he has Persistent Hyperplastic Primary Vitreous (PHPV)
The space at the back of the eye, behind the lens, is normally filled with a
clear jelly. This jelly is called the vitreous. Children with PHPV are born
with a hazy, scarred vitreous. The hazy vitreous blocks light passing to the
back of the eye. This leads to blurred vision, this means my little boy is
not blind they did also confirm the cataract but both of these can be
surgically repaired.
He is not blind due to an incurable condition he just has several treatable
issues, that is very different then what previous doctors had said!!!!!!!
While we were inpatient the doctor who preformed the ultrasound contacted a
doctor in L.A. who specializes in this operation on toddlers and he is very
excited to see Stephen , we are scheduled to met with him to get all the
facts since if left untreated retinal detachment is common which then can
lead to blindness, which the doctors were amazed had not happened since
having this condition for two years is unheard of.
We could not be happier with the results from these procedures and all the
doctors that helped us were amazing as always. Stephen received excellent
care from his nurses and I feel our prayers were answered. Our therapist
explained now his hearing and sight will improve his development will follow
since he now has that stimulation to want to develop.
Again thanks for all your prayers and you guys are always in our thoughts
and prayers,
Stevie, Val and Kidos
vdotfox@yahoo.com
- - -
 Update
7-2-08
Stephen turned 2 years old yesterday and since according to the doctors it
was not an event we were expected to share we really felt we reached a
milestone and with GODS help we expect to share many more.
Stephen is doing great, getting bigger and heavy but I'm not complaining.
Since the G Tube was placed in March he gained 8 lbs and some muscle. He is
doing so well the doctors are scheduling a few surgeries that previously
have been put off.
He has finally developed a sleep schedule and its going good. He
definitely has a strong personality, very spoiled and he is becoming more
vocal, and we are loving every grunt and yell.
Thanks,
Steve,Valerie and the Kidos
- - -
Update 4-4-08
Hello All,
I'm glad to report Stephen is doing well. He is now 21 months old, it seem
to have flew by. We did discover Stephen has urinary reflux to his kidneys
with some cyst but again with the help of the great team of doctor's and
nurses we seen during our last admit in March we were able to control it
before it caused anymore problems. Stephen did receive the G Tube and with
the exception of some development of granunolma tissue which is scheduled to
be removed everything has went very smoothly. I do have to admit I was kinda
scared when they first told me he was a candidate for the G Tube. I had many
questions and misconceptions. I was not sure if I could handle this, imagine
I was worrying about myself when after all this was happen to Stephen and of
course he took it like a champ and I took it like a crazy lady, over
thinking everything but once I realized it was just another step in making
my little one safer it all feel into place. He did not miss a laugh or smile
and that made me okay. Plus I have a purchased a large bubble and put him in
it, from the "protect my baby store in my head" which has helped!
He is steadily making progress in his development and of course till he
is able to get the button feeding tube I have not let him have too much
tummy time which I have been assured by his therapist would not hurt him if
he did roll over but this is me we are talking about. I'm very excited to
report my mister has been heard trying to say mom, dad says it sound more
like mmmmmmm but don't listen to him!
Thanks,
Valerie, Stephen and the Kidos
1/29/08
Stephen is doing really well, He is 18 mo now and is 24 lbs, he was the
lucky recipient of a new virus called HMVP, flu and another bout with
pneumonia a week or so ago but as always he came thur like a champ with the
help from those much needed and appreciated nurses. I really think the
family is more affected by all his symptoms then he is.
'm starting to believe my little
stinkers condition is meant to put us, his family in check, he does keep us
on our toes and I have yet to see a bigger example of Grace and Mercy. We
were able to see a wonderful very helpful nutritionist and she gave me some
great ideas, recipes, and suggestions for my Stephen and along with her
efforts to get me a standing order for pedisure he is steadily gaining the
weight he needed. Stephen is schedule for a series of swallow tests to
determine if he is a candidate for a G-Tube for feedings which according to
all the doctors is a normal progression of his condition but as Stephen has
done before he might prove the doctors wrong. His last appointment with the
cardiologist went well the report was good his heart conditions are all
still the same but no progression and he was given the okay for ear tubes
which also went very well. Our family really thinks his hearing has improved
he has even been startled which had never happen before.
His seizures are totally under
control while his sleep habits are still left to be desired. My mister did
have a hard time of teething, since he is on a puree diet because of his
cleft pallet he was not getting any help with cutting his teeth so he was
not a happy camper but with the help of the finger tooth brush and a lot of
him biting our fingers he seemed to have got the job done.
I'm still trying to get better
interpretation of his MRI, regarding his cranial fusion and some other
facial structural issues but its kinda like pulling teeth to get a answer I
can understand. He has physical therapy and vision stimulation therapy twice
a week and I could not have asked for better therapist , they have made so
much progress with him.
Stephen is trying to sit up like
a big boy and I would not doubt it if it happens soon, his head control has
improved greatly and how he loves his rough play will dad and his sisters.
I'm grateful for this good report and hope to post many more.
Fox Family
Stephen, Valerie and kidos
11-19-07
Overall he is doing good. He had a few stays in the hospital for pneumonia
due to the left ventricle non compaction but with antibiotics it cleared
quickly. He has physical and vision stimulation therapy three times a week.
He is 16 months old now and according to tests is developing in the range of
a 1-3 month old. He has not yet mastered the roll, holding his head up or
sitting but he does like tummy time and he loves kicking his feet he is very
ticklish. He laughs and plays all day, no question he is a very happy baby.
He does have constant ear infections and his sleep habits are still not that
great but we manage fine. His cardiologist still has not approved the ear
tubes, hernia repair, soft pallet repair or extra digit removal due to his
fear of his heart condition.
He still eats from the Haberman bottles, I just puree all his meals. He's
22lbs he has not gain weight since April 07 but has not lost any either. I'm
trying to see a nutritionist and get a GI appointment but their is a big
wait list here at Children's Miller in Long Beach that's where he gets his
care. Despite the wait for an appointment the doctors have all been great.
His eye sight is still poor to none but he does keep his eyes open most of
his waking hours and he responds to light, if you take him where sun shines
he starts to laugh hysterically its beautiful to watch. His hearing has not
been officially tested since he does not sleep long enough during the day
for anyone to test him, but we have determined he responds to very deep
sounds I believe my family has adjusted very well and we all feel we
communicate with him well, my 6 year old has discovered if you bark at him
he laughs uncontrollably so that's are thing our whole family barks like a
dog and he loves it.
I’m sure like every other parent on this site our son Stephen is the Joy in
our would and he is perfect in our eyes and we would not give up any of this
experience easy or hard for anything on this earth, like all of our children
he is a blessing to us and our family and we are honored to be in his life!
Valerie Fox
- - - -
 August 31, 2006
Our names are Valerie and Steve Fox from Santa Fe Springs, Ca our son is
Stephen Fox he was born 7/1/06, 8lbs 4oz, 21inches.
He was born with an extra digit on both hands, cleft pallet, umbilical
hernia a few sores which have healed on his head and deep-set eye which he
has not yet been able to open
He was observed in the NICU for 7 days he did have a G-tube in place but
after a few day he was able to feed from a special nipple so after talking
to the doctors we decided to take him home and remove the G-tube.
The hospital has placed him on hospice at home, he is now 2 months, and
11lbs and feeding very well (thank God) since the doctors told us he would
not be able to feed.
He has conjunctivitis and makes a loud
noise while he sleeps like a snoring noise he is showing no other signs of
his diagnosis of trisomy 13 and since our Doctors don’t seem to know much
about trisomy 13 we not sure what we should be looking out for.
I guess I’m just trying to find other parents in similar situations.
Valerie and Steve Fox
vdotfox@yahoo.com
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