From Julian's COTA Journal.
A quick note to let you know that Julian has a bladder surgery scheduled for April 10th - just a couple weeks away. This will be the first step towards his transplant, as the Docs in Palo Alto want to take care of Julian's bladder before they transplant the new organ. That way, the risk of post-transplant infection will be minimized - especially critical as he'll be on immune-suppressants after the transplant. Not sure yet when the transplant will take place, but the first step in the bladder reconstruction process will take place on April 10th.
We just found out today that we have a room at the Ronald MacDonald House in Palo Alto, starting on April 8th. This is huge relief, as it was unclear until now where we'd be staying long-term while in California. Julian needs to stay close to the Children's Hospital at Stanford while waiting for a kidney, and he may need to go back on dialysis between the bladder reconstruction and the actual transplant, so we're very thankful for the space at Ronald MacDonald.
Please continue to pray for Julian's continued health. He had a virus two weeks ago that he's very nearly over, and he needs to be in good health in time for the operation. His labs are holding steady, and we're doing our best to manage Julian's blood chemistry with the supplements we've been giving him over the past few years. As his native kidneys continue to decline, however, this becomes an increasingly delicate balance. Please pray that God sustains him through the bladder surgery (hopefully only a single operation), all the way through the transplant and subsequent recover period. He's in very good spirits, and continues to be a ray of sunshine for everyone he meets.
That's it for now. Good night.
Friday, November 14, 2008
03.13.2008 - Transplant Update
From Julian's COTA Journal.
We flew to Palo Alto on Monday morning for a whirlwind tour of appointments and exams at the Children's Hospital at Stanford, following up on our trip last January. The transplant surgeon and his team have decided that they'd like to reconstruct Julian's bladder before doing the transplant, thereby reducing the risk of infection that could result from doing the reconstruction after the transplant, when Julian will already be on immune system suppressants. Everything at Stanford seems to be done in the opposite manner than that which we've prepared for, so this is requiring something of a paradigm shift on our part. Not that there's anything being said by the team at Stanford that doesn't make sense - it's just different. As much as we'd like to believe that medicine is hard science, and that there's only one correct way to do a given procedure... well, that doesn't seem to be the case.
They drew blood while we were there as well, and we're still waiting for the lab results. We're a little on edge, as Julian's total kidney clearance is somewhere in the 8% range at present, and the doctors in Denver are getting nervous.
We're getting nervous too, but are trusting that God will lead us through this as we seek the best possible treatment for Julian's current condition. In the mean time, he's as happy as can be, and has no idea that anything is really wrong (although he's probably starting to wonder why we spend so much time at so many hospitals...).
Anyway, we're still waiting and praying, hoping that the course we're on is in fact the best one for Julian. Thank you for your continued prayer and support as we go through this.
We flew to Palo Alto on Monday morning for a whirlwind tour of appointments and exams at the Children's Hospital at Stanford, following up on our trip last January. The transplant surgeon and his team have decided that they'd like to reconstruct Julian's bladder before doing the transplant, thereby reducing the risk of infection that could result from doing the reconstruction after the transplant, when Julian will already be on immune system suppressants. Everything at Stanford seems to be done in the opposite manner than that which we've prepared for, so this is requiring something of a paradigm shift on our part. Not that there's anything being said by the team at Stanford that doesn't make sense - it's just different. As much as we'd like to believe that medicine is hard science, and that there's only one correct way to do a given procedure... well, that doesn't seem to be the case.
They drew blood while we were there as well, and we're still waiting for the lab results. We're a little on edge, as Julian's total kidney clearance is somewhere in the 8% range at present, and the doctors in Denver are getting nervous.
We're getting nervous too, but are trusting that God will lead us through this as we seek the best possible treatment for Julian's current condition. In the mean time, he's as happy as can be, and has no idea that anything is really wrong (although he's probably starting to wonder why we spend so much time at so many hospitals...).
Anyway, we're still waiting and praying, hoping that the course we're on is in fact the best one for Julian. Thank you for your continued prayer and support as we go through this.
03.06.2008 - Update
From Julian's COTA Journal.
We received a call today from the Docs at Denver Children's Hospital, advising us that Julian's most recent labs (earlier this week) were not good - his approximate kidney clearance is roughly 8% at present. They asked when exactly we might be getting the transplant in Palo Alto at the Children's Hospital at Stanford University.
So, we're off to Palo Alto on Monday in order to (hopefully) finalize things with them and activate Julian on their list. We're hoping that once he's active, it won't be more than a month or two (at most) before a viable kidney comes available.
Once we've finalized everything at Stanford, Stacy will return to Phoenix with Julian to spend time with her family, while I return to Colorado to resume work and close on the sale of our house. I'll be renting a place for a while, and commuting/telecommuting between here and Phoenix, until Stanford gives us the signal that a kidney may be available soon. At that time, Stacy and Julian will move up to the Ronald MacDonald House in Palo Alto, and I'll commute between CO and CA. Whew!
After the transplant, Stacy and Julian will reside at the Ronald MacDonald House for about 3 more months for follow-up, after which time they'll rejoin me here in Colorado.
It's going to be a very busy season as we each divide our time between several different places. Please pray that God sustains us through all of it, and most importantly, that God sustains Julian's health leading up to and following the transplant.
Good night.
We received a call today from the Docs at Denver Children's Hospital, advising us that Julian's most recent labs (earlier this week) were not good - his approximate kidney clearance is roughly 8% at present. They asked when exactly we might be getting the transplant in Palo Alto at the Children's Hospital at Stanford University.
So, we're off to Palo Alto on Monday in order to (hopefully) finalize things with them and activate Julian on their list. We're hoping that once he's active, it won't be more than a month or two (at most) before a viable kidney comes available.
Once we've finalized everything at Stanford, Stacy will return to Phoenix with Julian to spend time with her family, while I return to Colorado to resume work and close on the sale of our house. I'll be renting a place for a while, and commuting/telecommuting between here and Phoenix, until Stanford gives us the signal that a kidney may be available soon. At that time, Stacy and Julian will move up to the Ronald MacDonald House in Palo Alto, and I'll commute between CO and CA. Whew!
After the transplant, Stacy and Julian will reside at the Ronald MacDonald House for about 3 more months for follow-up, after which time they'll rejoin me here in Colorado.
It's going to be a very busy season as we each divide our time between several different places. Please pray that God sustains us through all of it, and most importantly, that God sustains Julian's health leading up to and following the transplant.
Good night.
01.30.2008 - Progress
From Julian's COTA Journal.
We returned last night from our trip to Palo Alto, CA safe and sound. We had a great time meeting with the transplant team at the Children's Hospital at Stanford, as well as doing some touristy things in San Francisco.
Below is an excerpt from an email that Stacy sent out last night offering a synopsis of the results of our trip.
*****
I just wanted to send a quick update to everyone in my e-mail address book. In a few days Julian will be listed on the Organ Recipient regional list for the Lucile Packard Children's Hospital in Palo Alto. He has been on the Denver Children's Hospital list for a kidney transplant since May of last year, which is almost 9 months, and his time accrued here in Denver will transfer with him to Palo Alto's list. Since children waiting for kidneys in Palo Alto don't typically have to wait even 1 year's time, it is likely Julian will be "up" for a kidney in the next few weeks-to-months.
We do have a friend who is being tested as a potential living donor, which is what is preferred in terms of prolonging the life of the transplanted kidney, so we still have hope for that option. But if she is not a match, or if her blood reacts "positively" (which isn't good) with Julian's, then we will be reconciled to receiving a cadaveric kidney and will know that it is God's best for Julian.
What this means is that Julian and I (Stacy) will be moving in to the Ronald McDonald House at Stanford in a couple of weeks, to wait for his kidney. After his transplant we will need to remain there an additional 100 days for their follow-up protocol. Dave will remain in Colorado, and come see us on weekends when he can. When the transplant occurs, he will take 2 weeks off to come be with us, but then will need to get back to work. Please pray that we weather the separation from him well!
The reason we are transferring his name to the Palo Alto list is that Stanford does a "Steroid-Free Transplant Protocol" which would keep Julian from having to be on Steroids for the rest of his life as part of his anti-rejection immune suppressant medication regimen. Denver uses Steroids. We will continue to be listed on Denver's list, but only as a back-up in case he is disqualified from Palo Alto for some reason.
Thank you all for continuing to lift our family up in prayer, and if any of you would like to donate a tax-deductible donation on behalf of the expenses associated with Julian's transplant, you can do so at www.cotaforjulianp.com or go to the Children's Organ Transplant Association website www.cota.org and find Julian P.'s name on the drop-down list. You can donate right from your computer if you like.
Thanks again!
Stacy Phillips
*****
Then, as if that weren't enough, this morning, we checked Julian in for surgery at Denver Children's Hospital to have his peritoneal dialysis catheter removed. All went well, and when Julian revived from anesthetic, the first words out of his mouth were "get down, run around."
An interesting note: when we returned to Children's to resume dialysis training in early January, we prayed that if for any reason, dialysis was not the correct track to pursue for Julian, that He would make it physically impossible for the dialysis to work. On the day we returned and hooked him up to the machine, for reasons unknown, the dialysis physically would not work. Not long after, we decided to suspend training until we could determine whether or not Julian really needed the dialysis at all (determined through his blood work). Today, after the surgery, the surgeon came to let us know just how Julian was doing. When we asked him what happened to the catheter, he explained that it was completely clogged with what he described as an unidentifiable substance: it was the consistency of fibrin but the wrong color; it was the color of the fatty omentum, but the wrong consistency. After all his experience in surgery, he was unable to explain what the substance was.
Coincidence?
That's all for tonight - thanks for checking in.
Below is an excerpt from an email that Stacy sent out last night offering a synopsis of the results of our trip.
*****
I just wanted to send a quick update to everyone in my e-mail address book. In a few days Julian will be listed on the Organ Recipient regional list for the Lucile Packard Children's Hospital in Palo Alto. He has been on the Denver Children's Hospital list for a kidney transplant since May of last year, which is almost 9 months, and his time accrued here in Denver will transfer with him to Palo Alto's list. Since children waiting for kidneys in Palo Alto don't typically have to wait even 1 year's time, it is likely Julian will be "up" for a kidney in the next few weeks-to-months.
We do have a friend who is being tested as a potential living donor, which is what is preferred in terms of prolonging the life of the transplanted kidney, so we still have hope for that option. But if she is not a match, or if her blood reacts "positively" (which isn't good) with Julian's, then we will be reconciled to receiving a cadaveric kidney and will know that it is God's best for Julian.
What this means is that Julian and I (Stacy) will be moving in to the Ronald McDonald House at Stanford in a couple of weeks, to wait for his kidney. After his transplant we will need to remain there an additional 100 days for their follow-up protocol. Dave will remain in Colorado, and come see us on weekends when he can. When the transplant occurs, he will take 2 weeks off to come be with us, but then will need to get back to work. Please pray that we weather the separation from him well!
The reason we are transferring his name to the Palo Alto list is that Stanford does a "Steroid-Free Transplant Protocol" which would keep Julian from having to be on Steroids for the rest of his life as part of his anti-rejection immune suppressant medication regimen. Denver uses Steroids. We will continue to be listed on Denver's list, but only as a back-up in case he is disqualified from Palo Alto for some reason.
Thank you all for continuing to lift our family up in prayer, and if any of you would like to donate a tax-deductible donation on behalf of the expenses associated with Julian's transplant, you can do so at www.cotaforjulianp.com or go to the Children's Organ Transplant Association website www.cota.org and find Julian P.'s name on the drop-down list. You can donate right from your computer if you like.
Thanks again!
Stacy Phillips
*****
Then, as if that weren't enough, this morning, we checked Julian in for surgery at Denver Children's Hospital to have his peritoneal dialysis catheter removed. All went well, and when Julian revived from anesthetic, the first words out of his mouth were "get down, run around."
An interesting note: when we returned to Children's to resume dialysis training in early January, we prayed that if for any reason, dialysis was not the correct track to pursue for Julian, that He would make it physically impossible for the dialysis to work. On the day we returned and hooked him up to the machine, for reasons unknown, the dialysis physically would not work. Not long after, we decided to suspend training until we could determine whether or not Julian really needed the dialysis at all (determined through his blood work). Today, after the surgery, the surgeon came to let us know just how Julian was doing. When we asked him what happened to the catheter, he explained that it was completely clogged with what he described as an unidentifiable substance: it was the consistency of fibrin but the wrong color; it was the color of the fatty omentum, but the wrong consistency. After all his experience in surgery, he was unable to explain what the substance was.
Coincidence?
That's all for tonight - thanks for checking in.
01.25.2008 - Update
From Julian's COTA Journal.
Yesterday we took Julian to Children's in Denver for a regular follow-up appointment at the Kidney Center. Julian's labs look very good right now, and he's full of energy. On top of that, he's been eating like he's never eaten before, possibly to make up for his illness earlier this month, but partly (we believe) because of the new approach we're taking to administering his meds and supplements. Basically, we're giving him his meds straight up, instead of mixing it in with his food. That way, we have tighter control over when he gets them, and we can be sure he's getting his full dose every time. But seriously, the boy is putting the food away! He's averaging something like 1200 calories a day right now, but last week he had several days at 1500+! When we take into account that pre-illness, we were grateful for anything over 600 calories a day, we're considering this a minor miracle!
So, he's growing, and his PTH (see the January 9th entry) is 308 presently. Not quite below 300, but very close, and still falling. Creatinine is back up to 4.2, and BUN is up to 84 - twice what it was a couple weeks ago. That's a little troublesome, but it doesn't seem to be affecting his demeanor or quality of life. If we can manage that through diet (we spoke with his Dietitian yesterday about that too), we should get that back to a more normal level.
Overall, Julian is doing very well. So much so that his Dr. asked us when we wanted to take the dialysis catheter out. Julian's quality of life is not what it was pre-catheter, and there's a possibility of infection or complication if we leave it in, so we're excited to have it taken out. That will happen next Wednesday January 30th. Please pray that all goes to plan.
And finally, tomorrow, we take Julian to San Francisco to the Children's Hospital at Stanford University. Re-read the January 9th entry for more info on that trip as well. We'll do all the touristy things over the weekend (I've never been there before), then on Monday we have appointments all day with the various teams who may be involved in Julian's transplant and subsequent care. We fly back on Tuesday - just in time for surgery on Wednesday.
Busy week.
A special thanks goes out to my employers, Moore & Bishton Architects in Longmont, CO. They've been incredibly supportive of our family and flexible with my work schedule, which has allowed me to go to all these appointments, trips and surgeries. I can't imagine not going to any of these things, but one can never take that kind of consideration for granted. Thanks Tom & Dave.
That's it for now. I'll post more when the dust settles.
Yesterday we took Julian to Children's in Denver for a regular follow-up appointment at the Kidney Center. Julian's labs look very good right now, and he's full of energy. On top of that, he's been eating like he's never eaten before, possibly to make up for his illness earlier this month, but partly (we believe) because of the new approach we're taking to administering his meds and supplements. Basically, we're giving him his meds straight up, instead of mixing it in with his food. That way, we have tighter control over when he gets them, and we can be sure he's getting his full dose every time. But seriously, the boy is putting the food away! He's averaging something like 1200 calories a day right now, but last week he had several days at 1500+! When we take into account that pre-illness, we were grateful for anything over 600 calories a day, we're considering this a minor miracle!
So, he's growing, and his PTH (see the January 9th entry) is 308 presently. Not quite below 300, but very close, and still falling. Creatinine is back up to 4.2, and BUN is up to 84 - twice what it was a couple weeks ago. That's a little troublesome, but it doesn't seem to be affecting his demeanor or quality of life. If we can manage that through diet (we spoke with his Dietitian yesterday about that too), we should get that back to a more normal level.
Overall, Julian is doing very well. So much so that his Dr. asked us when we wanted to take the dialysis catheter out. Julian's quality of life is not what it was pre-catheter, and there's a possibility of infection or complication if we leave it in, so we're excited to have it taken out. That will happen next Wednesday January 30th. Please pray that all goes to plan.
And finally, tomorrow, we take Julian to San Francisco to the Children's Hospital at Stanford University. Re-read the January 9th entry for more info on that trip as well. We'll do all the touristy things over the weekend (I've never been there before), then on Monday we have appointments all day with the various teams who may be involved in Julian's transplant and subsequent care. We fly back on Tuesday - just in time for surgery on Wednesday.
Busy week.
A special thanks goes out to my employers, Moore & Bishton Architects in Longmont, CO. They've been incredibly supportive of our family and flexible with my work schedule, which has allowed me to go to all these appointments, trips and surgeries. I can't imagine not going to any of these things, but one can never take that kind of consideration for granted. Thanks Tom & Dave.
That's it for now. I'll post more when the dust settles.
01.16.2008 - Many Thanks
From Julian's COTA Journal.
Hello everyone. We wanted to express our thanks to those of you who have made donations toward Julian's care. COTA doesn't tell us who donated or how much - rules are rules - but we submitted our first round of expenses last week, and they did tell us that the current account balance was within a couple hundred dollars of the total we submitted. So, suffice it to say, the need is being met.
A point of clarification though - someone asked if they could still donate, or if it was only something they could do at Christmas. Rest assured, as long as that little "Donate" tab is still at the top of this page, you can still make a donation. And yes, we are still in need of assistance - some of our most expensive costs have yet to be incurred. To wit, we haven't actually had the transplant yet.
So, thanks again to those of you who have made contributions, as well as to those of you still considering the possibility.
Julian is doing really well. Since he was sick over the New Year's holiday, we've taken a different approach to his medication/supplementation and his personal nutrition. Basically, we're changing the way we feed him and how we give him his meds. The results seem to be very good - he's actually hungry (!) and asking for food (!!!) on a regular basis. He's gaining weight and has plenty of energy for running around and laughing. He's so much fun to be with!
We have an appointment on the 24th of this month, when we'll get to see what effect his new food/med routine is having on his blood chemistry. Our hope is that we can forestall dialysis altogether, and wait until an organ becomes available. The dialysis catheter is still in - we've decided not to pull it for the time being. We'll keep it in as a back-up, in case we have to try dialysis again in the event that his kidneys decline further before an organ becomes available for transplant. We want to subject him to as few surgeries as possible, and the last thing we want is to have to put it back in later because we decided to pull it now.
That's the news for now - time to get ready for work. Thanks for checking in.
A point of clarification though - someone asked if they could still donate, or if it was only something they could do at Christmas. Rest assured, as long as that little "Donate" tab is still at the top of this page, you can still make a donation. And yes, we are still in need of assistance - some of our most expensive costs have yet to be incurred. To wit, we haven't actually had the transplant yet.
So, thanks again to those of you who have made contributions, as well as to those of you still considering the possibility.
Julian is doing really well. Since he was sick over the New Year's holiday, we've taken a different approach to his medication/supplementation and his personal nutrition. Basically, we're changing the way we feed him and how we give him his meds. The results seem to be very good - he's actually hungry (!) and asking for food (!!!) on a regular basis. He's gaining weight and has plenty of energy for running around and laughing. He's so much fun to be with!
We have an appointment on the 24th of this month, when we'll get to see what effect his new food/med routine is having on his blood chemistry. Our hope is that we can forestall dialysis altogether, and wait until an organ becomes available. The dialysis catheter is still in - we've decided not to pull it for the time being. We'll keep it in as a back-up, in case we have to try dialysis again in the event that his kidneys decline further before an organ becomes available for transplant. We want to subject him to as few surgeries as possible, and the last thing we want is to have to put it back in later because we decided to pull it now.
That's the news for now - time to get ready for work. Thanks for checking in.
01.09.2008 - Dialysis Update
From Julian's COTA Journal.
Happy New Year everyone! Lots of news this time - I'll try to be brief.
Stacy and Julian came back from Phoenix on December 27th, and on the 28th (which happens to be our wedding anniversary) Julian got sick. As in, violently throwing up every twenty minutes for 6+ hours, starting at about 10 p.m. Rough night. We went to Children's for labs on Saturday, after it seemed like Julian had rallied. Later that night, however, it became clear that he was still sick. On Sunday, we took him back to Children's, this time to the ER, because we were afraid he was becoming dehydrated. The nurses attempted to give him in IV in 7 (seven!) different places, but they kept blowing the veins. The next option was an IV in a peripheral jugular vein. At this point Julian was exhausted - I'm sure he thought he was being tortured - and we asked if there were any other options. The docs suggested an anti-nausea med, and we tried to feed him. Thank God - he kept it down. So, we took him home, and Stacy and I (mainly Stacy - have to give credit where it's due) rehydrated Julian orally: 5ml of fluids every 6 minutes or so, for hours. It worked. Julian recovered, and although the virus lingered for over a week, we're happy to report that he's back!
So, the other big news is that we went back to Children's this past Monday to resume dialysis training. We arrived, checked in, got Julian settled, hooked him up to the machine and pressed GO. And nothing happened. The machine was unable even to fill Julian with the dialysis fluid. This is very unusual - normally when there are problems, it's on the drain cycle. We tried for over an hour to initiate the fill cycle, but it would simply not go. So, the docs ordered an xray, and discovered that the catheter had again migrated up in his abdomen. We also reviewed his labs from that morning, and discovered that his labs were surprisingly good, especially considering his recent bout of illness. What to do? The docs were recommending a surgical repositioning of the catheter, but Stacy and I had a different feeling about the matter. So, after some deliberation, we decided that instead of surgically repositioning the catheter, we'd remove it and go back to managing through supplements and dietary regulation. The long and short of it is that there are more than one philosophy re: the treatment of someone in Julian's condition, even within the medical community. We think that through closer attention to what Julian is eating on a regular basis, we can bring his lab values back into acceptable ranges. Of particular concern are his creatinine level, as well as his parathyroid hormone (PTH). High PTH levels may be an indication of advancing levels of bone disease, and Julian's has been as high as 1400. The docs want to see it below 300. Right now it's in the 600+ range, so we're hoping and praying that we can bring it back down.
So, that's the news. Stacy takes Julian back for labs tomorrow, so we can see how we're doing. The dialysis catheter is still in, so we're still caring for it, but we're waiting for the docs to schedule the removal surgery.
At the end of the month, we're taking Julian to the Children's Hospital at Stanford University in Palo Alto, CA, for a transplant evaluation there. They have a transplant protocol that employs steroid-free anti-rejection medications post-surgery, with significant rates of success. This is a very big deal, as steroids can have some pretty serious long-term side effects. We'll post more info as it becomes available, but for now, just pray that the visit goes well. O, and they've indicated that the wait may be as short as 4-6 months for an organ, so that's a big deal too (we're currently on the list here in Colorado, which may be 1-2 years). The sooner we can get the transplant done, the better. All things in God's time though, no matter how much we may want to rush.
Julian would like to contribute to this blog entry, so here he is...
yyy
hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhnnnnnnnnnnnnnnnnnnnnnnnnnnnhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
Okay, that's enough for now. Good night, from all of us.
Happy New Year everyone! Lots of news this time - I'll try to be brief.
Stacy and Julian came back from Phoenix on December 27th, and on the 28th (which happens to be our wedding anniversary) Julian got sick. As in, violently throwing up every twenty minutes for 6+ hours, starting at about 10 p.m. Rough night. We went to Children's for labs on Saturday, after it seemed like Julian had rallied. Later that night, however, it became clear that he was still sick. On Sunday, we took him back to Children's, this time to the ER, because we were afraid he was becoming dehydrated. The nurses attempted to give him in IV in 7 (seven!) different places, but they kept blowing the veins. The next option was an IV in a peripheral jugular vein. At this point Julian was exhausted - I'm sure he thought he was being tortured - and we asked if there were any other options. The docs suggested an anti-nausea med, and we tried to feed him. Thank God - he kept it down. So, we took him home, and Stacy and I (mainly Stacy - have to give credit where it's due) rehydrated Julian orally: 5ml of fluids every 6 minutes or so, for hours. It worked. Julian recovered, and although the virus lingered for over a week, we're happy to report that he's back!
So, the other big news is that we went back to Children's this past Monday to resume dialysis training. We arrived, checked in, got Julian settled, hooked him up to the machine and pressed GO. And nothing happened. The machine was unable even to fill Julian with the dialysis fluid. This is very unusual - normally when there are problems, it's on the drain cycle. We tried for over an hour to initiate the fill cycle, but it would simply not go. So, the docs ordered an xray, and discovered that the catheter had again migrated up in his abdomen. We also reviewed his labs from that morning, and discovered that his labs were surprisingly good, especially considering his recent bout of illness. What to do? The docs were recommending a surgical repositioning of the catheter, but Stacy and I had a different feeling about the matter. So, after some deliberation, we decided that instead of surgically repositioning the catheter, we'd remove it and go back to managing through supplements and dietary regulation. The long and short of it is that there are more than one philosophy re: the treatment of someone in Julian's condition, even within the medical community. We think that through closer attention to what Julian is eating on a regular basis, we can bring his lab values back into acceptable ranges. Of particular concern are his creatinine level, as well as his parathyroid hormone (PTH). High PTH levels may be an indication of advancing levels of bone disease, and Julian's has been as high as 1400. The docs want to see it below 300. Right now it's in the 600+ range, so we're hoping and praying that we can bring it back down.
So, that's the news. Stacy takes Julian back for labs tomorrow, so we can see how we're doing. The dialysis catheter is still in, so we're still caring for it, but we're waiting for the docs to schedule the removal surgery.
At the end of the month, we're taking Julian to the Children's Hospital at Stanford University in Palo Alto, CA, for a transplant evaluation there. They have a transplant protocol that employs steroid-free anti-rejection medications post-surgery, with significant rates of success. This is a very big deal, as steroids can have some pretty serious long-term side effects. We'll post more info as it becomes available, but for now, just pray that the visit goes well. O, and they've indicated that the wait may be as short as 4-6 months for an organ, so that's a big deal too (we're currently on the list here in Colorado, which may be 1-2 years). The sooner we can get the transplant done, the better. All things in God's time though, no matter how much we may want to rush.
Julian would like to contribute to this blog entry, so here he is...
yyy
hhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhnnnnnnnnnnnnnnnnnnnnnnnnnnnhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
Okay, that's enough for now. Good night, from all of us.
12.23.2007 - Change in Plans
From Julian's COTA Journal.
Sorry for the delay everyone - it's been a bit hectic this holiday season. Stacy, Julian and I were in training for Julian's dialysis for the past two weeks, but early last week, a complication arose in his treatment that prevented us from proceeding with his treatment or from taking the dialysis equipment home and treating him here. Basically, the catheter used for his peritoneal dialysis had migrated up in the peritoneal cavity, which effectively disabled it. Our training nurse and the doctors have seen this kind of thing before, and it may resolve itself as time passes. If not, though, the surgeons may have to go back inside and reposition the catheter so it will work properly. We're not too keen on that alternative, so we're praying that the situation will resolve itself. Julian goes back for a follow-up x-ray in early January, after which we can finish up our training and start to treat him at home.
In the mean time, Stacy took Julian to Phoenix to spend Christmas with her folks. They'll return on the 26th.
Please continue to pray for Julian's health. So far, he's still the happiest little boy I know - 25 pounds of sunshine!
Merry Christmas & Happy New Year!
Sorry for the delay everyone - it's been a bit hectic this holiday season. Stacy, Julian and I were in training for Julian's dialysis for the past two weeks, but early last week, a complication arose in his treatment that prevented us from proceeding with his treatment or from taking the dialysis equipment home and treating him here. Basically, the catheter used for his peritoneal dialysis had migrated up in the peritoneal cavity, which effectively disabled it. Our training nurse and the doctors have seen this kind of thing before, and it may resolve itself as time passes. If not, though, the surgeons may have to go back inside and reposition the catheter so it will work properly. We're not too keen on that alternative, so we're praying that the situation will resolve itself. Julian goes back for a follow-up x-ray in early January, after which we can finish up our training and start to treat him at home.
In the mean time, Stacy took Julian to Phoenix to spend Christmas with her folks. They'll return on the 26th.
Please continue to pray for Julian's health. So far, he's still the happiest little boy I know - 25 pounds of sunshine!
Merry Christmas & Happy New Year!
12.11.2007 - Dialysis Training
From Julian's COTA Journal.
Julian had a follow-up appointment last Thursday to flush the new catheter, change the dressing at the catheter exit, and remove the stitches that were holding the exit wound closed post-surgery. Everything went well until it was time to take the stitches out. It took a nurse, a doctor and me (holding him down) what seemed like forever to finally remove the stitches. Julian, if he were able, would describe the incident as traumatic. After it was over, we went across the street and had pizza. One of Julian's favorites.
Overall, Julian's recovery has been a miracle by itself. Less than a week after the surgery, he was basically back to his normal, energetic, sun-shiny self. Which is a huge relief to Stacy and I, as we're always concerned about how all of this medical intervention might affect his quality of life, here in the present and off in the future. He's a little confused about the tube now wrapped up under his shirt, and has asked us a few times if he can take it off, but he doesn't seem to be experiencing any kind of pain or discomfort.
So today, dialysis training begins. Stacy and I have been a collective bundle of nerves since the surgery, fearful of possible infection, and just anxious in general about what this all means and what the future holds. Training takes two weeks (!) which means bundling Julian up in the car and driving him to the new Children's Hospital in Aurora, about 50 miles away - every day. One of my concerns for him at this point is that he'll be bored. I mean, what do you do with an energetic 3-year-old for a full day at a hospital when you're supposed to be paying attention to an instructor and he's supposed to be tethered to a machine? I guess we'll find out. We're also interested to see what effect the dialysis has on Julian's overall health and blood chemistry, which is how they monitor how severe his condition is. We're praying that he starts to grow and gain weight, one of many concerns for us.
It's all a little overwhelming right now, on the brink of something so big and new. I'm sure once we get in and start learning how it all works and how we, as Julian's home care-providers, are supposed to use the equipment and monitor his progress, the nerves will start to settle down. But in the mean time...
Please pray for all of us, for health for Julian, for all the stuff mentioned above, and that Stacy and I will get enough rest. That's a big concern for me especially, as I'll be juggling my job and the new training regimen for the next two weeks. Also, those night-time diaper changes... anyway, we're just at the beginning of a long, new road, and I'm tired already.
Until next time...
Julian had a follow-up appointment last Thursday to flush the new catheter, change the dressing at the catheter exit, and remove the stitches that were holding the exit wound closed post-surgery. Everything went well until it was time to take the stitches out. It took a nurse, a doctor and me (holding him down) what seemed like forever to finally remove the stitches. Julian, if he were able, would describe the incident as traumatic. After it was over, we went across the street and had pizza. One of Julian's favorites.
Overall, Julian's recovery has been a miracle by itself. Less than a week after the surgery, he was basically back to his normal, energetic, sun-shiny self. Which is a huge relief to Stacy and I, as we're always concerned about how all of this medical intervention might affect his quality of life, here in the present and off in the future. He's a little confused about the tube now wrapped up under his shirt, and has asked us a few times if he can take it off, but he doesn't seem to be experiencing any kind of pain or discomfort.
So today, dialysis training begins. Stacy and I have been a collective bundle of nerves since the surgery, fearful of possible infection, and just anxious in general about what this all means and what the future holds. Training takes two weeks (!) which means bundling Julian up in the car and driving him to the new Children's Hospital in Aurora, about 50 miles away - every day. One of my concerns for him at this point is that he'll be bored. I mean, what do you do with an energetic 3-year-old for a full day at a hospital when you're supposed to be paying attention to an instructor and he's supposed to be tethered to a machine? I guess we'll find out. We're also interested to see what effect the dialysis has on Julian's overall health and blood chemistry, which is how they monitor how severe his condition is. We're praying that he starts to grow and gain weight, one of many concerns for us.
It's all a little overwhelming right now, on the brink of something so big and new. I'm sure once we get in and start learning how it all works and how we, as Julian's home care-providers, are supposed to use the equipment and monitor his progress, the nerves will start to settle down. But in the mean time...
Please pray for all of us, for health for Julian, for all the stuff mentioned above, and that Stacy and I will get enough rest. That's a big concern for me especially, as I'll be juggling my job and the new training regimen for the next two weeks. Also, those night-time diaper changes... anyway, we're just at the beginning of a long, new road, and I'm tired already.
Until next time...
12.02.2007 - Healing
From Julian's COTA Journal.
Today we went on a short outing to the Stone Cup, a local coffee shop here in Lyons. Julian seems to have more and more energy, and seems to be less and less affected by the pain of his surgery. He's still tender when we have to lift him up, but we take it nice and slow. Don't want to over stress that wound as it heals. But by and large, he seems to be returning to his normal, sunny self.
Our big prayer request right now has to do with nutrition. Julian has never been a big fan of eating, and right now, with the new catheter in place, getting his minimum intake into him is a real challenge. Please pray with us that he gets enough food to heal and grow.
Our other big prayer request has to do with infection as the wound heals. The point of entry for the catheter is below the "belt-line" on his diapers, which makes it difficult to keep it dry. Of course, we're under strict instructions to do just that, so we have keep his diaper changed at least once every 2 hours - 24 hours a day. That means that if we put him down at 9 tonight, one (or both) of us will be up at 11, 1, 3, 5 and 7 to change his diaper. So I guess sleep is our third big prayer request.
All in all, I think we're doing pretty well. We report back to TCH for a training orientation this Thursday morning (12/6/07), and begin actual training the following Tuesday (12/11/07). If all goes to plan, we should be finished with training by Thursday 12/20/07 - in time for a quiet Christmas at home.
Thanks for checking in. Until next time...
Our big prayer request right now has to do with nutrition. Julian has never been a big fan of eating, and right now, with the new catheter in place, getting his minimum intake into him is a real challenge. Please pray with us that he gets enough food to heal and grow.
Our other big prayer request has to do with infection as the wound heals. The point of entry for the catheter is below the "belt-line" on his diapers, which makes it difficult to keep it dry. Of course, we're under strict instructions to do just that, so we have keep his diaper changed at least once every 2 hours - 24 hours a day. That means that if we put him down at 9 tonight, one (or both) of us will be up at 11, 1, 3, 5 and 7 to change his diaper. So I guess sleep is our third big prayer request.
All in all, I think we're doing pretty well. We report back to TCH for a training orientation this Thursday morning (12/6/07), and begin actual training the following Tuesday (12/11/07). If all goes to plan, we should be finished with training by Thursday 12/20/07 - in time for a quiet Christmas at home.
Thanks for checking in. Until next time...
12.01.2007 - Home Again
From Julian's COTA Journal.
Julian was admitted for surgery on Thursday November 29 at 10:30. The surgery, scheduled for 12:30, was supposed to be an outpatient procedure. Kissing him goodbye as he went under the anesthetic was one of the hardest things we've ever done, and brought back a lot of memories of his first few weeks of life in the NICU at The Children's Hospital 3 years ago.
The surgery took about an hour, after which time we were able to reunite with him in the recovery room. Around 5:00, the nurses were talking about discharge orders, but Stacy, following her mother's instinct, asked them to draw bloodwork and send it to the lab - just to make sure all was well. Leading up to the surgery, Julian was not allowed to eat or drink anything, and because his food is the only way we have of getting his regular meds and supplements into him, she suspected that something might be out of balance. Sure enough, his bicarb as very low, which means that his blood was slowly becoming acidic. This in turn made him feel lousy, not wanting to eat. They admitted us for the night so they could hook him up to an i.v. in order to restore his electrolyte levels.
By early afternoon yesterday, things were looking better, so they discharged us. We packed up all our things, and headed down to the cafeteria for a quick dinner before the long ride home. What timing - as we were eating, Stacy spotted Dr. Hall, the doctor in charge of the NICU, a man instrumental in Julian's recovery 3 years ago. He marveled at Julian's condition, even post surgery, and commented that his brother had a child who had a kidney transplant some years ago and is now thriving. Encouraging news for us at this point. We asked if he liked the new facility (TCH's new campus is amazing!), and he said yes, that he was just down for a bite to eat before doing evening rounds. "Same ol' same ol'." I wonder if he realizes how much his "same ol'" means to those of us whose children he's helped.
We arrived home last night around 7 or 8. We were able to change his diaper and put his pajamas on without incident, although it's pretty clear he's very tender.
This morning Stacy and Julian slept in while a neighbor drove me back in to Longmont to retrieve the van I left at the grocery store on Thursday morning. Today we took it easy - we're all catching up on our sleep - mainly watching movies (Monster's Inc. anyone?) and cleaning house in between diaper changes and meals. Thankfully it's the weekend and we can stay pretty close to home.
Julian seems to be doing well. He's still tender - they had to cut the abdominal muscle to insert the catheter, so it probably feels something like recovering from a knife wound. No sudden moves, lots of lying in place. However, his cheerful spirit is still in tact, and he is still the ray of sunshine he was pre-surgery.
We start training next week, for two weeks, and our biggest concern right now is infection - just keeping the area clean and dry. Thanks to you all for your prayers through all of this. Keep it up - we're not out of the woods yet.
Our fondest hope is that none of this will have a negative impact on Julian's quality of life right now, and that it will in fact have a positive effect on his long term quality of life. Please pray that this is the case.
Julian was admitted for surgery on Thursday November 29 at 10:30. The surgery, scheduled for 12:30, was supposed to be an outpatient procedure. Kissing him goodbye as he went under the anesthetic was one of the hardest things we've ever done, and brought back a lot of memories of his first few weeks of life in the NICU at The Children's Hospital 3 years ago.
The surgery took about an hour, after which time we were able to reunite with him in the recovery room. Around 5:00, the nurses were talking about discharge orders, but Stacy, following her mother's instinct, asked them to draw bloodwork and send it to the lab - just to make sure all was well. Leading up to the surgery, Julian was not allowed to eat or drink anything, and because his food is the only way we have of getting his regular meds and supplements into him, she suspected that something might be out of balance. Sure enough, his bicarb as very low, which means that his blood was slowly becoming acidic. This in turn made him feel lousy, not wanting to eat. They admitted us for the night so they could hook him up to an i.v. in order to restore his electrolyte levels.
By early afternoon yesterday, things were looking better, so they discharged us. We packed up all our things, and headed down to the cafeteria for a quick dinner before the long ride home. What timing - as we were eating, Stacy spotted Dr. Hall, the doctor in charge of the NICU, a man instrumental in Julian's recovery 3 years ago. He marveled at Julian's condition, even post surgery, and commented that his brother had a child who had a kidney transplant some years ago and is now thriving. Encouraging news for us at this point. We asked if he liked the new facility (TCH's new campus is amazing!), and he said yes, that he was just down for a bite to eat before doing evening rounds. "Same ol' same ol'." I wonder if he realizes how much his "same ol'" means to those of us whose children he's helped.
We arrived home last night around 7 or 8. We were able to change his diaper and put his pajamas on without incident, although it's pretty clear he's very tender.
This morning Stacy and Julian slept in while a neighbor drove me back in to Longmont to retrieve the van I left at the grocery store on Thursday morning. Today we took it easy - we're all catching up on our sleep - mainly watching movies (Monster's Inc. anyone?) and cleaning house in between diaper changes and meals. Thankfully it's the weekend and we can stay pretty close to home.
Julian seems to be doing well. He's still tender - they had to cut the abdominal muscle to insert the catheter, so it probably feels something like recovering from a knife wound. No sudden moves, lots of lying in place. However, his cheerful spirit is still in tact, and he is still the ray of sunshine he was pre-surgery.
We start training next week, for two weeks, and our biggest concern right now is infection - just keeping the area clean and dry. Thanks to you all for your prayers through all of this. Keep it up - we're not out of the woods yet.
Our fondest hope is that none of this will have a negative impact on Julian's quality of life right now, and that it will in fact have a positive effect on his long term quality of life. Please pray that this is the case.
11.28.2007 - Dialysis Surgery
From Julian's COTA Journal.
Please pray - tomorrow's the day.
We check Julian in at Denver Children's Hospital at 10:30 a.m. for his surgery at 12:30. The catheter surgery is an outpatient procedure, so I don't anticipate it will take very long. However, we're always nervous when our boy goes under the knife, so obviously we'll be praying for a successful operation.
We're told it should take about a week for the catheter to heal in, after which we'll start training for Dialysis. Training will take place at Children's Hospital, and can take up to 10 days: that'll be a bit trick to work in around my work schedule, but my employers have been incredibly supportive of Stacy and I through all of this (thanks guys). Once training is complete, we'll dialyze Julian at home while he sleeps. All of this is big and new and scary for Stacy and I, even though the docs are telling us it's really not that big a deal. Julian however, is a ray of sunshine through all of this, having no idea that anything is out of the ordinary. He really is an incredible blessing, and a source of encouragement to Stacy and me.
We just spent Thanksgiving in Phoenix (family) and SoCal (Mickey & friends) - one last hurrah before we make the big change. After everything settles down and we're close to establishing a routine, we plan on spending a quiet Christmas at home here in Colorado.
The newsletters are on the way... most of them anyway. In the mean time, please pray for Julian's health as we make the change to life with dialysis.
Please pray - tomorrow's the day.
We check Julian in at Denver Children's Hospital at 10:30 a.m. for his surgery at 12:30. The catheter surgery is an outpatient procedure, so I don't anticipate it will take very long. However, we're always nervous when our boy goes under the knife, so obviously we'll be praying for a successful operation.
We're told it should take about a week for the catheter to heal in, after which we'll start training for Dialysis. Training will take place at Children's Hospital, and can take up to 10 days: that'll be a bit trick to work in around my work schedule, but my employers have been incredibly supportive of Stacy and I through all of this (thanks guys). Once training is complete, we'll dialyze Julian at home while he sleeps. All of this is big and new and scary for Stacy and I, even though the docs are telling us it's really not that big a deal. Julian however, is a ray of sunshine through all of this, having no idea that anything is out of the ordinary. He really is an incredible blessing, and a source of encouragement to Stacy and me.
We just spent Thanksgiving in Phoenix (family) and SoCal (Mickey & friends) - one last hurrah before we make the big change. After everything settles down and we're close to establishing a routine, we plan on spending a quiet Christmas at home here in Colorado.
The newsletters are on the way... most of them anyway. In the mean time, please pray for Julian's health as we make the change to life with dialysis.
11.06.2007 - Dialysis
From Julian's COTA Journal.
We met with Julian’s doctors in Denver on November 1st to revisit long-term and immediate strategies for Julian’s care. Julian’s situation is finally to the point where dialysis can no longer be avoided. So on November 29th, Julian will undergo surgery to have the catheter installed whereby we’ll be able to hook him up to the dialysis machine. Then once he’s healed, Stacy and I will undergo training so we can treat him at home. We're nervous, scared about the unknown. But we're convinced that at this point, this really is the best thing we can do for him.
We'll post more information as things progress - certainly when he goes in for surgery. In the mean time, our annual newsletter is almost, nearly ready. If you don't receive one in the next few weeks, drop us a line and we'll add you to the list.
Thanks again for your continued prayer and support.
We met with Julian’s doctors in Denver on November 1st to revisit long-term and immediate strategies for Julian’s care. Julian’s situation is finally to the point where dialysis can no longer be avoided. So on November 29th, Julian will undergo surgery to have the catheter installed whereby we’ll be able to hook him up to the dialysis machine. Then once he’s healed, Stacy and I will undergo training so we can treat him at home. We're nervous, scared about the unknown. But we're convinced that at this point, this really is the best thing we can do for him.
We'll post more information as things progress - certainly when he goes in for surgery. In the mean time, our annual newsletter is almost, nearly ready. If you don't receive one in the next few weeks, drop us a line and we'll add you to the list.
Thanks again for your continued prayer and support.
10.20.2007 - Boston in the Fall
From Julian's COTA Journal.
We celebrated Julian's birthday in
The doctor we met with in
So now we wait for an organ. It’s a difficult thing to pray for, because unless the organ comes from a living donor, it has to be ‘cadaveric’, which is a tidy term that means it came from someone recently deceased. Kidneys from live donors have a better track record for longevity, but a cadaveric kidney will work too. In any case, we’ll take what God provides, and let him work out the details.
08.17.2007 - Reprieve
From Julian's COTA Journal.
We met with Dr. Lum at the kidney center at Children's last Thursday (August 9th), fully expecting to be told it's time for dialysis, and to put a surgery date on the calendar. To our surprise, Dr. Lum made a few changes to Julian's medication regimen, and asked that we bring him in for labs in 7-10 days. So, we've made the changes, and Stacy will take Julian in for labs on Monday, to see if the changes have made the necessary difference. We sure hope so.
08.08.2007 - Dialysis Update
This morning we met with Dr. Koyle (Urologist) to talk about the course of action we might take pursuant to Julian's bladder and urethral passage reconstruction, as it relates to his dialysis and/or kidney transplant. Specifically, we wanted to know if it was possible to do the reconstruction surgery at the same time the dialysis and/or kidney operations took place. He'd like to wait until after the kidney is in before rebuilding the bladder and reconstructing the urethral track for various reasons. We also found out that in terms of donor/organ matching, one of the most significant factors when considering a kidney transplant is the age of the organ. Ultimately we'd love to see Julian receive a 0-point antigen mismatch (i.e. a 6 out of 6-point match) organ, but we learned today that it would be better to receive a 3-point antigen mismatch from a live donor than it would to receive a 1- or 2-point antigen mismatch from a cadaveric (i.e. deceased) donor. So we're hoping and praying that God provides what He knows we need.
We also learned this morning that Dr. Koyle plans to move to Seattle sometime this fall. This is significant to us in that Dr. Koyle's work and presence in Julian's life was one of the main reasons we stayed here in Colorado after Julian was born. It will be possible for us to travel with Julian to Seattle for appointments and procedures as required, but that adds a level of complexity we hadn't taken into account. We'd love to get as much of the surgical work done as quickly as possible at this point, so that Dr. Koyle can participate in Julian's transplant and subsequent care to the greatest degree possible.
Tomorrow, we meet with the Doctors at the Kidney Center at Childrens to talk about Julian's blood work and what it all means in practical terms (i.e. when should we plan for dialysis surgery and training, etc.). In the mean time, Stacy will be on the phone with the transplant coordinator at Childrens to see where we are on "the list" and to more closely examine the likelihood of Julian receiving an organ from a living related donor.
Stay tuned.
Tuesday, July 31, 2007
Going Private
Hello everyone. If you're viewing this page, it's because you've been invited. As you may be aware, Julian has a new page at www.cotaforjulianp.com, in order to help raise funds for his pending kidney transplant. As part of our agreement with COTA, we've had to disable this blog, as well as his site at www.julianxane.com, which I've changed to a URL forwarding page, automatically redirecting visitors to the COTA site. Feel free to share the new addresses with those you know. We'll post blog entries, photos, etc. on the COTA website soon.
Saturday, July 14, 2007
Vocabulary II
Julian has already noticed that some of our most important pursuits involve objects with screens and buttons - computers, phones, ipods, calculators, etc. He loves to press buttons and see what effect his action has. This can be particularly exciting if he happens to have possession of a phone. No inadvertent 9-1-1 calls yet, thankfully, but we think it may be merely a matter of time before local authorities show up at the house in response to one of his calls. Can't wait.
Anyway, today's topic is...
Toys & Tech
pwess’-uh a but’-ton = "press the button" - that which absolutely must be done when a button is discovered, whether or not it is connected to a corresponding screen. As Julian has discovered, buttons pressed in one location often have a corresponding effect in another. Turning the TV on and off has proved to be endlessly entertaining.
tee'-fee' = "TV"
a-poot’-tah = "computer" - endlessly powerful devices, and apparently very important, as mom and dad spend a lot of time in front of them, whether at home or at the office.
guf’-fa = "camera" - Julian is quite familiar with the working end of the camera, but now that he's discovered that there is a screen and several buttons on the other side, he is determined to figure out how it all works.
seh’-fun = "cell phone" - again, endlessly entertaining, especially when he manages to get it to talk to him in one of its many voices, some which sound suspiciously like some of the people he knows.
uh’-pod = "ipod" - only makes noise when the wires are plugged in, but a very colorful and playful interface nonetheless.
too’ a lon’ = "turn it on" - once the power button is located, hours of fun can be had when this is used repeatedly and in rapid succession with...
too’ a loff’ = "turn it off"
Interestingly, at one of Julian's recent physical therapy evaluations, his therapist and other evaluators were impressed with his cognitive development. They were specifically struck by two things:
First, they were impressed with the fact that objects such as puzzles held his attention for extended periods of time (he loves to figure things out). We're pretty sure this is a genetic predisposition, as all of the living male members of his bloodline have a compulsion to understand how "it" (whatever "it" is - a computer program, a machine, a car, a building, an economic system, etc.) works. When I was a kid, my dad gave me a book called The Way Things Work, which had schematic diagrams for everything from juke boxes to jet engines. I loved it! Julian already displays some similar curiosities, and we're only too happy to help him explore and understand his world.
Second, he knows all of his letters and numbers by sight. One of our favorite after-work activities is having him sit on my lap in front of the computer keyboard with a fresh Word document open. I'll set the font to 72pt bold, and he'll sit there and play on the keyboard, watching the letters pop up on the screen. I'll quiz him as we go along, asking which letters he's keying in, or asking him to find specific letters. Sometimes he just likes the way it looks when he holds a button down, and row after row of GGGGGGGGGGGGG streams across the screen. Who didn't like that when they were a kid?
All in all, we're happy that he's doing so well, and seems to be so pleasantly disposed. At my work, he's been dubbed "Little Mister Sunshine" or "Mister Happy." His third birthday is looming - just three more months (!) - and so far the 'terrible twos' haven't been so terrible. Even when he's cranky, he's still pretty darn sweet!
Anyway, today's topic is...
Toys & Tech
pwess’-uh a but’-ton = "press the button" - that which absolutely must be done when a button is discovered, whether or not it is connected to a corresponding screen. As Julian has discovered, buttons pressed in one location often have a corresponding effect in another. Turning the TV on and off has proved to be endlessly entertaining.
tee'-fee' = "TV"
a-poot’-tah = "computer" - endlessly powerful devices, and apparently very important, as mom and dad spend a lot of time in front of them, whether at home or at the office.
guf’-fa = "camera" - Julian is quite familiar with the working end of the camera, but now that he's discovered that there is a screen and several buttons on the other side, he is determined to figure out how it all works.
seh’-fun = "cell phone" - again, endlessly entertaining, especially when he manages to get it to talk to him in one of its many voices, some which sound suspiciously like some of the people he knows.
uh’-pod = "ipod" - only makes noise when the wires are plugged in, but a very colorful and playful interface nonetheless.
too’ a lon’ = "turn it on" - once the power button is located, hours of fun can be had when this is used repeatedly and in rapid succession with...
too’ a loff’ = "turn it off"
Interestingly, at one of Julian's recent physical therapy evaluations, his therapist and other evaluators were impressed with his cognitive development. They were specifically struck by two things:First, they were impressed with the fact that objects such as puzzles held his attention for extended periods of time (he loves to figure things out). We're pretty sure this is a genetic predisposition, as all of the living male members of his bloodline have a compulsion to understand how "it" (whatever "it" is - a computer program, a machine, a car, a building, an economic system, etc.) works. When I was a kid, my dad gave me a book called The Way Things Work, which had schematic diagrams for everything from juke boxes to jet engines. I loved it! Julian already displays some similar curiosities, and we're only too happy to help him explore and understand his world.
Second, he knows all of his letters and numbers by sight. One of our favorite after-work activities is having him sit on my lap in front of the computer keyboard with a fresh Word document open. I'll set the font to 72pt bold, and he'll sit there and play on the keyboard, watching the letters pop up on the screen. I'll quiz him as we go along, asking which letters he's keying in, or asking him to find specific letters. Sometimes he just likes the way it looks when he holds a button down, and row after row of GGGGGGGGGGGGG streams across the screen. Who didn't like that when they were a kid?
All in all, we're happy that he's doing so well, and seems to be so pleasantly disposed. At my work, he's been dubbed "Little Mister Sunshine" or "Mister Happy." His third birthday is looming - just three more months (!) - and so far the 'terrible twos' haven't been so terrible. Even when he's cranky, he's still pretty darn sweet!
Wednesday, July 11, 2007
Vocabulary
Greetings all! All's well here in Colorado, although Julian spiked a fever last night. As such, I've taken the morning off.As long as I'm here, I thought I'd post some of Julian's burgeoning vocabulary - "baby words" if you will. He's been talking in sentences for quite some time now, but as time goes by, more and more of it is understandable as English! Here's a sampling of some of his current utterances. Today's category...
Food & Fun
puh-lay’ = "play"
wun’ a-woun’ ow-swoid’ = "run around outside" - his very favorite activity!
slot’-tet -or- slad'-ded = "salad"
kwak’-keurs = "crackers"
bo-wed’ = "bread"
a sweem’-in a pool’ = "swim at the pool" - something new for Julian, which he enjoys a lot.
weev’-veur = "river" - where we go on walks.
woks = "rocks" - what we throw in the river.
pa’-tah = "pasta" - usually uttered in a hushed whisper, as if in reverence.
sik’-ken = "chicken" - meant to be served with pasta.
bik = "bisque"
wal’-leur = "water" - to be served with ice.
fote’ it = "hold it" - as in "I want to hold it!"
Stay tuned - we'll post more soon.
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