May 2010
Currently Justin in the hospital. He has a serious infection that is requiring him to be intubated. Each day his overall health is improving and despite his kidney function taking a nose dive initially, his creatinine levels are now slightly improving. Every time Justin is hospitalized it takes a toll on his body and, of course, his general health. We are hopeful, as of this writing, that Justin will recover from this current hospitalization enough to be able to come home soon.
While his health has been up and down lately. Justin still has had periods of time where he has felt well enough to go out for a walk or even to the movies. Justin also received a laptop computer with special hardware and software from the Make-A-Wish Foundation. He enjoys using his computer and plays games and accesses the Internet almost daily. Justin still tires quite easily but he definitely has fun on his good days. While Justin's overall prognosis is not good, we continue to help him have the happiest and healthiest life he can have at this time.
November 2009
Justin is now on home teaching. He spent
most of this school year is the hospital. In
fact he only attended one day of school so far.
Justin's donor kidney continues to fail and it
is unclear if Justin's body will be able to
handle another round of dialysis. Justin is
scheduled for surgery soon. While the doctor's
don't hold out too much hope that this will
solve Justin's multiple medical problems, this
surgery is literally his last hope. Justin
continues to plug away at home. He has his good
days and his bad days. Most of the time he is
tired and listless. Justin still loves to go out
in the community when he has the energy,
unfortunately we have to be very careful with
the Swine Flu epidemic as Justin's immune system
is very compromised. The name of the game now is
to keep Justin health enough to be able to get
the surgery he requires.
June 2009
Justin continues to be in and out of the
hospital on a regular basis. The doctors
disagree on what course of treatment Justin
should receive. This puts me in an unusual
position as the Loma Linda Renal Team, the
Kaiser Nephrologist and a CCS funded Urologist
battle it out. Each specialist presents a
compelling case and without the detailed medical
background I am at a loss to which direction to
take. One professional wants a specific surgery
and the other professional refuses to do it.
This has gone back-and-forth for weeks.
All I know is that
my son is getting sicker and sicker. He will
eventually require another kidney transplant. In
the meantime Justin's quality of life and
diminished quite a bit. Generally Justin is
tired and grumpy. He is suffering frequent
seizures which contributes to his low energy. I
just hope that the medical professionals work it
out so that we can move forward with a specific
plan for Justin's medical treatment and
hopefully see some significant improvement with
Justin's health.
December 2008
Justin continues to hang in there. He has not started dialysis yet so, of course, we are all very thankful. Justin's health continues to be fragile and he is often sick. Justin is easily tired and usually wants to stay home instead of going on the activities with the other kids. Justin still loves to go out to eat however. We try to take him to his favorite restaurants several times a week. We recently tried to reduce some of Justin's medication that helps with his behavioral challenges. Unfortunately Justin's behavioral episodes spiked immediately. Because Justin needs to be compliant with his medication and his treatments related to his renal failure we had continue with his current psychotropic medications. We hope 2009 will bring continued stable health for Justin.
September 2008
Justin started middle school this year. Its hard to believe that Justin is almost 13-years old! Justin seems to enjoy his new school. Thankfully Justin still has the small instructional aide from last school year supporting him in middle school. His aide is fluent in sign language so that really helps Justin understand what he needs to do in class. Justin's hearing was effected by the renal failure and now he is severely hearing impaired. Justin has always used sign language to augment he oral speech since even before his kidney issues he had a serious speech impairment. That skill is coming in handy now. Justin's health continues to be fragile and of course he has already had to miss quite a bot of school due to his illness. We know it wont belong before Justin will need to go on dialysis again.
May 2008
Justin's health continues to be a concern to
everyone. During the past several months he has
had a couple of hospitalizations related to his
renal disease. Currently Justin's donor kidney
is hanging in there but by most estimates it
wont be long before Justin will need to be back
on dialysis. Justin's donor kidney is failing
and future donor kidneys will likely also not
last long due to IgA Neuropathy disease in
Justin's body. When Justin has good days he is
able to attend school and participate in quiet
weekend activities like attending movies and
theater performances. When Justin is feeling
lousy he often spends most of the day at home
sleeping. We continue to prepare special meals
for Justin due to his renal failure and monitor
his medication level and blood pressure
frequently. Despite this how awful disease has
taken a toll on him physically, Justin continues
to be happy, social and playful much of the
time.
February 2008
Justin has had relatively stable health for the past few months. He is still able to eat a regular diet and his fluid intake is not being monitored. Even though Justin's health is stable he still tires easily. Justin takes frequent naps throughout the day. He often does not participate in weekend community activities and would rather just stay home and nap. Despite Justin's health issues he remains feisty and demanding at times. Justin still enjoys going to Chuck-E-Cheese and Nickel Nickel. He also likes going to movies. Right now Justin is anxiously awaiting his turn to go see the Hannah Montana/Miley Cyrus "Best of Both Worlds" concert on the big screen.
November 2007
Justin has been in and out of the hospital over the past few months. He is definitely in renal failure again and the doctors are just hoping to prolong dialysis as long as possible. Currently Justin is at home but is very swollen around his face and limbs. He has very limited energy and now prefers to stay home and nap rather than go out on activities. We are having to make sure that Justin is urinating throughout the day which would indicate that his kidney is working at least partially. The doctors tell us that it is just a matter of time before Justin's donor kidney shuts down. Justin will be a candidate to have a second kidney transplant when the time comes.
September 2007
At a recent Loma Linda Medical Center Renal Clinic appointment it was discovered that Justin's blood and urine work-up showed something is going wrong with Justin's donor kidney. He is spilling a tremendous amount of protein in his urine which could mean that his kidney (Justin only has one functioning kidney) is failing! Currently Justin is an in-patient at Loma Linda while the doctors perform a biopsy on his kidney. We are hopeful that perhaps a change in Justin's medications might stop his body from rejecting his donor kidney. We are afraid that if Justin's kidney fails his body will not be strong enough to wait for another kidney transplant. Please keep Justin in your prayers and we will keep Justin's page updated with the lasted information on his medical condition and his overall health.
August
2007
Justin is having a GREAT summer. He most
especially loves going to summer camp. In the
past Justin has been too ill to attend summer
camp. He was very sad to see his brothers go off
every day to camp and he had to stay home. This
year Justin has already attended two weeks of
Special Camp for Special Kids and Several weeks
of Camp James. These are full-day action packed
camps. Its great to see Justin have enough
energy to enjoy every minute of camp.
School starts next
month, in the meantime Justin will be fitted for
hearing aids. One of the more serious side of
effects of Justin's kidney failure was a
moderate to sever hearing loss in both ears.
Justin will now need to wear bilateral hearing
aids to get the most out of the hearing he has
left. We are all keeping our fingers crossed
that Justin will tolerate the hearing aids and
leave them in all day.
April 2007
Looks like Justin will be graduating from elementary school in June and transitioning to middle school during the summer. This transition is happening about a year earlier than we anticipated. We have been having difficulty figuring out how best to educate Justin and thought maybe a change of placement might suit him best. With Justin's physical disabilities, hearing impairment, speech impairment, cognitive delays, behavioral issues, and on-going medical issues educating him in the least restrictive environment can be a challenge. Currently he is in a special day class with students who have a variety of academic levels but none have hearing impairments. The problem is no one knows sign language, or is willing to learn sign language, and thus Justin's social interactions are limited. We are hopeful that there will be more options for Justin in the middle school setting.
February 2007
Justin enjoyed the holidays. He made several trips to see Santa Claus and attended many holiday parties. This was the first holiday season in a long time that Justin felt well enough to participate fully in all of the festivities. Justin has been getting out more and more. His stamina has increased quite a bit since this summer. Although Justin can no longer walk, even with forearm crutches, he still wants to active. Justin really loves the fact that he can go to amusement parks again. He missed all of the excitement of the fast rides, the engaging shows, the delicious snacks, and colorful characters that only an amusement park has to offer.
Thanks to a generous donation by MO Industries, Inc Justin is getting an annual Disneyland pass this month!!
Justin is so excited to feel well enough to go to his "favorite place on Earth!" Since Justin's kidney transplant has been a success and Justin has stabilized, he can even ride some of the children's rides at the park. I am sure with an annual pass, Justin will be spending lots of time with Mickey and his pals at Disneyland!!
December 2006
Justin is loving life right now. Since the kidney transplant he has been able to return to school, participate in all of the family activities, and eat ANYTHING he likes! Justin's health has been remarkably stable and his energy level high. Justin no longer takes naps or falls asleep in the community. Behaviorally, Justin has changed for the better as well. Since we no longer have to deny Justin the food treats he enjoys, Justin's anger and frustration level has gone way down. It is a miracle how a kidney transplant has transformed Justin from a very sick and frail child to a spirited and joyful young boy! We are forever grateful to the Justin's kidney donor's family and their decision to give Justin the gift of life. Thank you.
October 2006
Justin's health has stabilized since his kidney transplant. Justin has returned to public school on a full-time basis and participates in all of our family activities. Although Justin is required to take a lot of medicine for the rest of his life and he is no longer able to walk, it's amazing how Justin's life has changed for the better following the successful transplant. We continue to be so thankful for the "gift of life" Justin's kidney donor's family has given Justin
July 2006
JUSTIN RECEIVED HIS KIDNEY TRANSPLANT!!! We
are so excited to report that Justin had a
successful kidney transplant in early June.
Justin's transplant took place at Loma Linda
Hospital. All we know about his donor is that the
donor was a 20-year old male. We are so grateful
that the donor's family made the brave and
selfless decision to donate their loved one's
kidney. Justin's doctors are very pleased with
Justin's progress since his transplant.
Justin is as healthy
as can be expected and the kidney is working
perfectly! Of course we are all very happy.
Justin's doctor also told us that the kidney came
just in time. It is very likely that Justin would
not have made it much longer waiting for a
transplant. Thanks to everyone who kept Justin in
their thoughts and prayers.
March 2006
Since January 2006, Justin (10) has been offered two kidneys on two separate
occasions. Sadly, he was unable to accept either kidney because on one occasion
Justin was hospitalized and on the other occasion he was home but on
antibiotics. A kidney transplant recipient must be in stable physical health
before a transplant can take place. Justin has had many medical complications
related to his renal failure. He is often hospitalized or very sick.
With a new kidney most of his medical issues, if
not all of them, will be resolved. Justin is really in a Catch-22. He can't get
healthy while he is in renal failure and he can't get a new kidney if he is
sick. We continue to pray that a kidney will be available soon and during one of
the brief windows of time where Justin's health is fairly stable.
January 2006
Justin has returned to the home teaching program three days a week. We are hoping to keep Justin healthy enough to stay out of the hospital and thus be ready to accept the next kidney that he is offered.
In the meantime Justin continues with his dialysis schedule of Tuesday, Thursday and Saturdays. Although it is a bummer to have to spend so much time hooked-up to a dialysis machine, Justin has developed some friends at the Dialysis Center. The staff are very nice and supportive and their is certain comradery among the children. Justin's behavior during dialysis has really improved.
Justin seems to be more adjusted to the routine and increasing in maturity as well. We are hopeful that Justin's kidney will come in the next few months.
   
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