Well it is hard to believe that more than 2 years have passed since we have posted regular updates. Looking back on the posts from 2008, there were so many changes going on with Christian's care. We were really experiencing daily trials while learning how to handle life with this new method of dialysis + the job loss post-Katrina and the endeavor of self employment.
A lot of water has passed under the bridge in 2009 and 2010 and I can tell you that it has been a tremendous experience of lows and highs. I'll go into more detail with posts to follow.
For Christian's care, there has been some miraculous advancements in the field of study for his disease. The short story is that the wonderful genetics team at the Univ of Iowa have run the protein chain and figured out 3 or 4 'triggers' that cause Atypical HUS. We know now why Christian's body does what it does. Wow.
And almost on divine queue, a new drug emerges, Soliris, that turns out to be a silver bullet for stopping the progression of Atypical HUS in it's tracks! Mega wow.
Soliris has been in clinical trial for about 18 months now and has what I believe is a 100% success rate in halting the bad part of the Atypical HUS progression. It does not stop Christian's body from initiating the progression of trying to fight infection, which is great, but it takes over the role of protecting his body, which happens normally in people without the deficiency of HUS.
In layman's terms I present it this way: It does not stop the team from taking the ball down the court on you (the body's immune system response), but it is like putting Shaq right in front of the goal and he swats away every single attempt of the opponent to slam dunk the ball (killer cells) into the basket (your healthy cells).
Of course, Soliris is the most expensive drug the world has ever seen (more than $400k per year at full dosing, google search Soliris and Forbes magazine for a neat article Forbes Article - World's Most Expensive Drugs) but we'll cross that path when we get there.
So, for 2011 we are working towards transplant + Soliris. And getting our son set up for a long, long run at life. THAT is answered prayer.
Take care,
Kiki's Dad
Wednesday, January 26, 2011
Tuesday, October 14, 2008
Lot's of changes - moving forward positively!
It's been a while since my last post. We've had a lot of change in the family these past few months to update you on.
As you know the past 1.5 years have been dedicated to moving Christian to the new in-home hemodialysis. This process has been a larger task than we anticipated.
All of the time missed had Christian running behind on schoolwork at Kehoe and it was decided it would be necessary to hold him back another year to keep going there.
Coupled with the financial crunch we have been working through, it was very obvious we had to make a change to public schools for the kids. Late in the summer, we made the decision when it was apparent some work I was expecting to start got either delayed or canceled.
So we have moved the kids from 1 small school to 3 different larger schools. The kids appear to have adjusted very well - God Bless 'em.
However, we were still having a terrible time with a family routine - Christian would get home at 4:30, we'd eat dinner at 5-5:30 and start getting him on the therapy at 6-6:30.
The problem is, sometimes it was taking as long as 3-4 hours to get his accesses started and so the other 2 kids were left to fend for themselves and Christian was going on therapy until sometimes 2am.
Even on days when things went right, we were having to leave the other kids to themselves and this was becoming a problem.
Well, we have moved Christian to a program at his school called "Hospital / Homebound". We started it yesterday and it has been wonderful.
Essentially Christian goes to school 1/2 a day, and we use the other 1/2 for dialysis time and teachers come to the house to teach him.
We are starting his therapy at 7am - usually have him connected and running by 8-8:30 and the teachers come between 9 and 11.
We've only done this morning routine for a few days now but it is WONDERFUL.
Christian will be going back to the hospital for a week to create a third buttonhole again - replacing the one that we lost at the beginning of the summer. Not sure of the date yet, but we'll let everyone know.
Take care,
Kiki's Dad
As you know the past 1.5 years have been dedicated to moving Christian to the new in-home hemodialysis. This process has been a larger task than we anticipated.
All of the time missed had Christian running behind on schoolwork at Kehoe and it was decided it would be necessary to hold him back another year to keep going there.
Coupled with the financial crunch we have been working through, it was very obvious we had to make a change to public schools for the kids. Late in the summer, we made the decision when it was apparent some work I was expecting to start got either delayed or canceled.
So we have moved the kids from 1 small school to 3 different larger schools. The kids appear to have adjusted very well - God Bless 'em.
However, we were still having a terrible time with a family routine - Christian would get home at 4:30, we'd eat dinner at 5-5:30 and start getting him on the therapy at 6-6:30.
The problem is, sometimes it was taking as long as 3-4 hours to get his accesses started and so the other 2 kids were left to fend for themselves and Christian was going on therapy until sometimes 2am.
Even on days when things went right, we were having to leave the other kids to themselves and this was becoming a problem.
Well, we have moved Christian to a program at his school called "Hospital / Homebound". We started it yesterday and it has been wonderful.
Essentially Christian goes to school 1/2 a day, and we use the other 1/2 for dialysis time and teachers come to the house to teach him.
We are starting his therapy at 7am - usually have him connected and running by 8-8:30 and the teachers come between 9 and 11.
We've only done this morning routine for a few days now but it is WONDERFUL.
Christian will be going back to the hospital for a week to create a third buttonhole again - replacing the one that we lost at the beginning of the summer. Not sure of the date yet, but we'll let everyone know.
Take care,
Kiki's Dad
Thursday, July 24, 2008
Late night reflection...
Well, I promised an update before the end of the month and so here is a quick couple thoughts regarding Christian and his challenge.
The question we get asked that seems to always underlie his challenge is simple, yet huge: Why?
The answer is simple, yet huge as well: It's right there in scripture - John 9: 1-3.
When asked by the disciples why a blind man was blind, had the man or his parents "sinned", Jesus answered, "Neither he nor his parents sinned; it is so that the works of God might be made visible through him."
The more you re-read and reflect on that, the deeper and larger it gets, I know.
It doesn't really answer the "why" question, it just "is". Finding peace in that simple, yet huge question and response is what it is.
Spend some quiet time with it, you'll see what I mean.
-- Aida and Christian are headed to Houston today for clinic and a fishing trip - the Texas Oilmen's group takes the dialysis kids out once a year to a private lake and it is a great time for the kids. Thank you, TOBI volunteers!!!
Take care,
Kiki's Dad
The question we get asked that seems to always underlie his challenge is simple, yet huge: Why?
The answer is simple, yet huge as well: It's right there in scripture - John 9: 1-3.
When asked by the disciples why a blind man was blind, had the man or his parents "sinned", Jesus answered, "Neither he nor his parents sinned; it is so that the works of God might be made visible through him."
The more you re-read and reflect on that, the deeper and larger it gets, I know.
It doesn't really answer the "why" question, it just "is". Finding peace in that simple, yet huge question and response is what it is.
Spend some quiet time with it, you'll see what I mean.
-- Aida and Christian are headed to Houston today for clinic and a fishing trip - the Texas Oilmen's group takes the dialysis kids out once a year to a private lake and it is a great time for the kids. Thank you, TOBI volunteers!!!
Take care,
Kiki's Dad
Thursday, July 10, 2008
We're still out there!
My last post was titled - "What happened to March?"
And then promptly 3 more months went by and I have not been able to update the page or work on the site or finish the video.
I just wanted to drop a quick note to all that Christian is doing pretty good right now. He attended a summer camp where there are dialysis facilities for all of the kids - it was a great experience for him.
On the tough side, we may have lost the use of the "B" port we use for dialysis access in his arm. Thank goodness we had the "C" port created back in February (remember those blogs?). At clinic this month we will see if they can use the sharp needles and restart the "B" port again. Having the option of the third port is something we'd like to get back.
Things have been very tough for our family these last three months, but at the same time I have never been more certain that this year will end strong and be the beginning of a great run for us.
I can tell you that things will get tougher for us before they get better, but they will get better.
Sorry for such a short update, but I know some of you have been wondering how things are going. I am without internet access right now due to my Sprint card flaking out. I have a new one on the way, but Best Buy has it backordered since 6/29! So my short internet times are at coffee shops with only enough time for me to roll through emails and get some business done.
I'll post more before the end of the month of July - scouts honor!
Take care,
Kiki's Dad
And then promptly 3 more months went by and I have not been able to update the page or work on the site or finish the video.
I just wanted to drop a quick note to all that Christian is doing pretty good right now. He attended a summer camp where there are dialysis facilities for all of the kids - it was a great experience for him.
On the tough side, we may have lost the use of the "B" port we use for dialysis access in his arm. Thank goodness we had the "C" port created back in February (remember those blogs?). At clinic this month we will see if they can use the sharp needles and restart the "B" port again. Having the option of the third port is something we'd like to get back.
Things have been very tough for our family these last three months, but at the same time I have never been more certain that this year will end strong and be the beginning of a great run for us.
I can tell you that things will get tougher for us before they get better, but they will get better.
Sorry for such a short update, but I know some of you have been wondering how things are going. I am without internet access right now due to my Sprint card flaking out. I have a new one on the way, but Best Buy has it backordered since 6/29! So my short internet times are at coffee shops with only enough time for me to roll through emails and get some business done.
I'll post more before the end of the month of July - scouts honor!
Take care,
Kiki's Dad
Tuesday, April 1, 2008
What happened to March???
Wow, how fast does a month fly by these days?
As you can probably tell, things have gone pretty well since I last updated. We have gone back to once a month clinic vists as Christian's lab results have continued to remain positive.
Things were so tough during December through February that we still have not implemented the exercise routines into Christian's regimen, but that will be our focus this month.
One of the excercises we really need to get on top of is the stretching of the IT band (ILIOTIBIAL TRACT) as shown in the picture. This is one of the causes of the curving of the legs we see in Christian's development - the deficiency in nutritional complements and build up of wastes in the body that the kidney would normally regulate cause his bones to weaken and his ligaments are tight.
Couple that along with the normal pressure of standing / walking during the day and one of the side effects of long term kidney disease is a curving of the lower legs.
The condition is known as genu valgum or knock knees and can become quite severe in kidney patients if not addressed. The good news is that with consistent exercise and better nutrition Christian can grow through it. Currently his legs are not severely affected and that is good news.
The better news is that if we get one more good month of labs, the doctors are going to put Christian back on growth hormone. He has been off of the hormone for about 3 years and getting back on it will be great. It will be nice to add some more height if we can and keep him from falling too far behind his friends and classmates.
We're also going to take this month to get some additional content up on Christian's site including pictures and a special video. Look for that in about 2 weeks.
Thanks for stopping by and keep plugging!
Hope and love,
Kiki's Dad
As you can probably tell, things have gone pretty well since I last updated. We have gone back to once a month clinic vists as Christian's lab results have continued to remain positive.
Things were so tough during December through February that we still have not implemented the exercise routines into Christian's regimen, but that will be our focus this month.
One of the excercises we really need to get on top of is the stretching of the IT band (ILIOTIBIAL TRACT) as shown in the picture. This is one of the causes of the curving of the legs we see in Christian's development - the deficiency in nutritional complements and build up of wastes in the body that the kidney would normally regulate cause his bones to weaken and his ligaments are tight.
Couple that along with the normal pressure of standing / walking during the day and one of the side effects of long term kidney disease is a curving of the lower legs.
The condition is known as genu valgum or knock knees and can become quite severe in kidney patients if not addressed. The good news is that with consistent exercise and better nutrition Christian can grow through it. Currently his legs are not severely affected and that is good news.
The better news is that if we get one more good month of labs, the doctors are going to put Christian back on growth hormone. He has been off of the hormone for about 3 years and getting back on it will be great. It will be nice to add some more height if we can and keep him from falling too far behind his friends and classmates.
We're also going to take this month to get some additional content up on Christian's site including pictures and a special video. Look for that in about 2 weeks.
Thanks for stopping by and keep plugging!
Hope and love,
Kiki's Dad
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