Tuesday, July 31, 2007
Saturday, July 14, 2007
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
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.
Thursday, May 24, 2007
This verse puzzled the women and they wondered what this statement meant about the character and nature of God.
One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study. That week, this woman called up a silversmith and made an appointment to watch him at work.
She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest, so as to burn away all the impurities.
The woman thought about God holding us in such a hot spot -- then she thought again about the verse that says, "He sits as a refiner and purifier of silver."
She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he also had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed.
The woman was silent for a moment. Then she asked the silversmith, how do you know when the silver is fully refined?
He smiled at her and answered, "Oh that's easy -- when I see my image in it."
If today you are feeling the heat of the fire, remember that God has His eye on you and will keep watching you until He sees His image -- in you.
Wednesday, May 23, 2007
I am getting a packet of information from COTA this week, which is the Children's Organ Transplant Association. They help families coordinate with their communities to help raise money that can be used for transplant-related expenses. It is a non-profit, so any monies donated are tax-deductable. I will hopefully be getting something concrete in place in the next couple weeks so we can start fund-raising for Julian.
If it is a live-donor situation, our costs, no including the testing costs to see if the donor is a viable match, can be from 40-50K (or more if there are any complications). If it is a cadaveric kidney, the operation to remove the kidney and transport it and test it against Julian's tissue/blood type will cost 20-30K. And those are just the initial costs. If the kidney is rejected and further costs are associated with removing the kidney, Julian only has a 1 Million Dollar lifetime transplant maximum on medical expenses that ARE covered by his insurance....so we will need all the help and prayers we can get.
I am not complaining about our health care system, it is the best in the world. And we will work hard to get Julian the best care in the world. I can't even imagine what we would have to go through if we lived in England or Canada. I shudder at the thought.
Thank you for checking in to the update!
Wednesday, May 02, 2007
Julian is doing very well. They've moved his labs to about every two weeks, but he still seems pretty stable. Therefore, he is not on Dialysis yet. We are still hoping for a match with a live donor, and are still proceeding down that road as we wait for a "cadaveric kidney" from the list. I found out definitively yesterday that Julian's health insurance, Blue Cross/Blue Shield, will not pay for any donor testing. The blood tests are 2K a pop, and we've already had Dave tested. We've decided that if any non-relatives want to be tested we are asking them to raise the money for the blood test on Julian's behalf, because we just can't afford it on our own.
Meanwhile we also found out that insurance will only pay 10K toward the live-donor's operation. It's about a 50K operation, so that leaves the balance as our responsibility. We've come to terms that it is what it is, and of course I will be appealing every decision of the insurance, but meanwhile we are coming up with ideas on how to offset the costs. One of them is that I've just become an Arbonne Consultant. Hopefully over time this will give us an increased income, and we will be able to set aside money so that we have it in the bank for when he'll need a new transplant (15 years or so). That way we keep our options open, as a live-donor kidney is a much better kidney to transplant than a cadaveric one. It works better and lasts longer and has less chance of rejection. Secondly, a friend of mine in Estes Park recommended that we organize some kind of 5K Benefit for Julian. I think that's a great idea too. If any of the people being tested come back a match, I will get right on that.
He is so sweet. He is learning new words every day, and saying them. He knows all his numbers up to ten, and all his letters. He can point to them and say them. What a doll! He is an outdoor boy, and loves to go adventuring around our "yard" (if you can call 3 acres a "yard"...to him it's a whole new world!).
Thank you for your continued prayers!
Saturday, March 31, 2007
He should be good to go for a year or so! It was necessary that we get all his dental work done prior to him being listed on the Kidney Recipient list. He has one more test and I have to complete a social evaluation with a social worker and that all happens next Thursday. He will then be on the list officially.
He won't be able to receive a transplant for another few weeks, however, because of the live vaccine MMR-V we gave him a week and a half ago. You need to wait 1 month after a live vaccine before giving anyone immune-suppressant drugs, otherwise they may develop the disease that they were vaccinated against because they were just exposed to a live version of it in the vaccine.
On another note, my mom is not doing well at all, and so we are all going to Phoenix for Easter. Julian and I will stay for a week, and Dave will stay just for Easter weekend. Since Julian will have no more tests, and be unable to receive a kidney anyway for a couple more weeks, we can travel with him. Technically they say you can travel anyway, even when you are actively on the list, but we don't want to do that because what happens if we are in Phoenix and a perfect match comes in for him? We have to either fly back within a couple hours, which is not always possible, or have the transplant in Phoenix. And since the surgical transplant team we want to use is in Denver, that seals the deal for us. We stay in Colorado until he gets his kidney.
My mom has cancer, metastatic breast cancer which spread to her bones and her brain. So far, after the re-diagnosis (she had breast cancer and was "clear" for a couple years...not really, actually, but they thought she was!) she has been on different regimens of Chemotherapy to manage the growth. This last Chemotherapy really took a toll on her body, and she is now not strong enough to continue the regimen. She has missed the last two weeks worth, which means the cancer has the opportunity to grow again and will. She has been in the hospital twice in the last 2 weeks, and is just not doing very well.
Thanks for your thoughts and prayers.
Tuesday, March 20, 2007
Dave and I agree that if Julian would be better off on Dialysis, ie his lifespan would be extended if he were on dialysis for the next few months to a year, as opposed to not being on Dialysis, we are all for it. That is the question I have for the doc on Thursday. We want to do what is best for Julian, that is for sure. If we can spare him invasive surgery and dialysis every night we would like to do that, so long as his kidneys hold up like they are. Currently we have one more potential donor (you know who you are! Thanks!) going through the process of being tested. If he is not a match, then we will have to wait for a "cadaveric kidney" which could take up to a year or longer to come through.
Yes! So pray that the donor is a match! Thank you!
Now, on to the busy week. Firstly, he has 4 vaccinations tomorrow. He's up to date, but because of his impaired kidney function a couple of the previous vaccines need to be repeated. They test his blood to see what antibodies he has developed, and he's got the mumps antibody but not rubella. So, he gets an MMR tomorrow, as well as a Hepatitis B, a Hepatitis A, a Pneumovax, and a TB test. I'll also take his Epogen shot up there so we don't have to give it to him this week. (Poor guy!) Then on Friday we go up for a psychological evaluation (all of us) which is included in the Transplant evaluation. Then on Monday Julian has mouth surgery at Children's to fill 3 cavities. They'll also take X-rays to see if there are any other cavities not seen in the visual exam that they can fill then as well. This is all in preparation to be put on the list. While Julian is in surgery, I will be attending a socialogical evaluation at the hospital. Once the vaccines, surgery, and evaluations are complete, Julian will be placed on the National Organ Recipient List.
After that happens, we wait. How long we wait is up to the Lord. Could be the next day, although they tell us that is highly unlikely. But God knows. If He wants to give Julian a kidney the next day, he can do it! It won't make sense, it will be a miracle, but He can do it.
So thank you for praying.
Friday, March 09, 2007
We started in Cardiology for an EKG. Stickers all over and leads connected to the stickers and hoooolllld still now... jussst a few seconds more... Got it! Whew! Then, on to Radiology for a pair of chest x-rays. More holding still while the big machine overhead buzzes and snaps. Done? OK, off to the lab, where they drew 20ml, the max for someone his size. There's a battery of blood testing to be done, and if all goes well, they got all they needed today.
Trauma trauma trauma! And on top of it all, he missed his nap.
So, no actual appointments today - just lots of poking and prodding. We're optimistic (as always) that everything will run smoothly from here on out, and that Julian will be on "the list" in a few weeks. After that, it's a matter of organ availability.
Thanks to those of you who have expressed even a passing interest in donating a kidney. Seriously, that's huge! And we want you to know how much it means to us, even if you don't end up being "the one."
That's it for now. Enjoy the new pic of Julian at the top of this post. Stacy took it. She's been great at taking portraits of him as he grows and changes. It's amazing to look back at the old photos and see how much he's grown already. Hard to believe.
Wednesday, March 07, 2007
Your beloved needs You now
God, be near, calm my fear
And take my doubt
Your kindness is what pulls me up
Your love is all that draws me in
I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You
God, my God, let Mercy sing
Her melody over me
God, right here all I bring
Is all of me
‘Cause You are and You were and You will be forever
The Lover I need to save me
‘Cause You fashioned the earth and You hold it together, God
So hold me now
Several of you have inquired about what being a kidney donor looks like, so I wanted to post the information on the Blog incase you are interested in looking into it further. Especially any of you with O+ blood!
First off, let me say we would be humbly grateful to any of you who decided to be tested. Once you have decided you would like to be a potential donor, which is an intensely private decision and should be decided by your whole family, the next step is for you to call the Transplant Coordinator at Denver Children's Hospital. You must initiate the first call, and then she will work with you every step of the way. The first test is a simple blood/tissue typing test I believe, which would either give you a green light (ie you are a match) or would rule you out. The Transplant Coordinator's name is Diane Dovel, and her direct phone number is (303)764-8463.
Next, I looked in our manual we were given last week and it contains the following information, verbatim:
"Living donor kidney donation is when a living person donates a kidney to the potential transplant recipient. Live donors must be healthy individuals that have been evaluated and identified as capable of undergoing surgery safely and living a healthy life with only one kidney. These donors are usually genetically related, such as a parent, an adult sibling or child, aunt or uncle, young grandparent, or other close relative (*sidenote from Stacy---they do not NEED to be related they just need to be a perfect match).
Potential live donors will undergo a complete evaluation before a final decision is made. Only those persons who are compatible and have no contraindications will be considered as potential donors. Sometimes people who are interested in being a living donor are not approved because of certain medical and/or psycholosocial circumstances.
Contraindications include (*meaning you'd probably be ruled out if you had the following):
*Significant health history (history of cancer, childhood diseases or other medical problems)
*Surgical history (abdominal surgery scar tissue may complicate nephrectomy)
*Current medical problems (high blood pressure, obesity, diabetes)
*Age (18 years to 55 years)
*Infectious diseases (hepatitis, HIV)
*Anatomy of kidneys (single kidney, multiple arteries)
*Social circumstances (single parent without significant support or extended family)
*Mental health illness (would require current mental health care provider evaluation)
*Alcohol or drug use (significant history of substance abuse)
The transplant team wants to ensure that the kidney donation is a safe and uncomplicated procedure for the donor and the best option for your child. If there is any concern about the safety of the donor, the procedure cannot be done. Being a kidney donor requires a great deal of commitment and responsibility to follow through with the many tests and examinations. The Living Donor Information Section has complete details of the evaluation, surgery and recovery.
The kidney donor must be healthy, and free of kidney disease or any other illness. The evaluation begins when the donor comes to the transplant team and has made the decision to become a live donor. Blood typing is one of the first tests performed to confirm their compatibility with the recipient. If the donor's blood type is compatible with your child's, the donor will then have a complete history physical examination.
It is important that the primary physician is involved when possible, because they are the most familiar with the donor's history and health. During this exam, several tests are performed that involve drawing blood, collecting urine and stool samples and an EKG and chest X-ray are performed. Most of the initial tests are part of the potential donor's annual physical exam. The next phase, and each consecutive phase, is taken only if nothing contraindicated is discovered that can eliminate the individual as a potential donor. When the evaluation is completed, the potential donor will have been screened for any infections, diseases and anypathology of the kidney that would eliminate them as a potential kidney donor.
Once an individual has been accepted as a live donor, the surgery can be scheduled and final preparations are made. The operations are done at the same time at The Children's Hospital. Two perating rooms are reserved and two to three transplant surgeons are scheduled for the day of surgery. The operation to remove the healthy kidney from the donor is called a nephrectomy. It is major surgery, and the surgical technique to remove the kidney and the risks involved will be discussed in detail with the donor prior to the operation. Post-operative
recovery occurs at The Children's Hospital and hospitalization can be up to five days, depending on the type of nephrectomy. Pain management is important allowing the patient to recover more comfortably. Following discharge, an additional 2 to 6 weeks may be necessary for a full recovery.
Your child's insurance, or Medicare, covers surgery expenses and may cover some of the donor evaluation. It is important that the potential donor's insurance company is notified of the indiviual's desire to donate. Any benefits or policies regarding insurance coverage need to
be discussed and understood before the evaluation. Written financial approval and generated referrals in compliance with their insurance policy are the donor's responsibility. Time off from work and cost of living expenses that may occur during the recovery time are the responsibility of the donor and you family. The transplant program is committed to helping your family utilize available resources that can help when addressing these issues.
In summary, the benefits of receiving a kidney from a live donor are
many, and include:
*Scheduling surgery at a convenient time for the donor and recipient
*Improved compatibility with genetically related donor (for example,
increased number of matching antigens with parents and siblings)
*Improved health of the kidney (no trauma related to the cause of
*Decreased ischemia (time kidney is on ice)
*Decreased episodes of acute rejection
*Immediate recovery of kidney function
Disadvantages to live donor transplant are mainly related to the risks of requiring a healthy individual to undergo a medically unnecessary surgical procedure. Any surgical procedure has risks that include anesthesia, risk of bleeding or blood clot formation, wound infection, and the experience of pain."
Saturday, March 03, 2007
We had an appointment with Julian's kidney doctors a couple of weeks ago, and everyone is in agreement now that Julian is big enough for a transplant. There are several ways to do it, and some of the doctors had concerns about limiting future modes of treatment if the transplant was performed a certain way. That hurdle has now been cleared, so we're officially on to the next step.
Now we're in the process of getting Julian on "the list." That process involves a considerable amount of testing and paperwork involving us, the hospital, Julian's PCP, and the insurance company - yikes! Getting all these people to talk to each other sometimes seems like a Herculean task, so we've got our hands full. Stacy especially is busy chasing everybody around, making sure everything gets filed and scheduled appropriately.
Julian is waking up from his nap, and Stacy is at the grocery store, so it sounds like it's playtime!
Monday, January 29, 2007
There’s a lot of information to process, and I won’t (can’t?) repeat it all here. They gave us a 6 lb. binder full of information, from team member contact info, to the step-by-step process leading up to the actual surgery, to the medications involved in Julian’s after-care, to the risks involved at every step. We’ll be experts by the time the surgery actually takes place.
Some of the things we’ll be doing that we would appreciate your prayer for are:
- Dealing with the insurance company – a transplant is a major deal in the insurance world, and we want to make sure it’s handled appropriately by all parties;
- Major and minor preparations leading up to the surgery – Julian’s labs, ekg’s, x-ray’s, and overall health, our family psych eval (!), and our own health and well being, along with a hundred things I can’t even think of right now – all very important;
- An appropriate organ match – neither Stacy nor I are good matches for Julian – Stacy’s type ‘B’, I’m type ‘A’, and Julian is type ‘O’.
The match is probably the biggest thing for us in the immediate future: as a type ‘O’, Julian is the universal donor, but he is the hardest to find a match for when it comes to receiving a donated organ. None of Julian’s living relatives have type ‘O’ blood that we’re aware of, so we’ll be put on the list for a cadaveric donor. The donor’s blood type pretty much has to be type ‘O’ in order for it to be viable. After that, there are several other comparative markers the surgeons will be looking for, to ensure compatibility and reduce risk of rejection. Lining up all the factors seems pretty daunting, and we’ve heard the wait can be anywhere from days to years. We’re hoping for days.
Should the wait be too long, and if Julian’s kidney function declines further, we’ll probably have to put him on dialysis in the interim. We’d like very much to avoid that. As such, we’re praying for a quick evaluation/preparation period, followed by a short wait for an organ. Please pray with us that this comes to pass.
After the actual transplant takes place, there will be a whole new set of prayer requests, as receiving a donated organ of any kind makes a person susceptible to any number of other possible ailments. That thought can be paralyzing to us as parents – do we really want to subject him to all that risk? But weighing all the options, we still feel that the transplant is still the best course of action. God has brought him this far. We’re confident that God will bring him through this as well.
Friday, January 26, 2007
Since last October, Julian’s kidney performance has been dancing around a threshold that traditionally triggers the need a for kidney transplant or, in the event that he’s not yet big enough for a transplant, dialysis. Stacy and I were hoping that Julian would be big enough for the transplant. According to Dr. Ford, this was probably not so.
Here’s why. A young kidney transplant patient can receive a new organ in one of two places: the pelvis, or the peritoneum (the smooth transparent membrane that lines the abdomen and doubles back over the surfaces of the internal organs to form a continuous sac). Traditionally, patients 15kg or above can usually receive a kidney in the pelvis (the old kidneys are left intact). However, patients weighing between 10kg and 15kg are usually considered too small to receive the pelvic transplant, and must receive it in the peritoneum. This becomes a problem in the event that the patient needs to be dialyzed in the future, as not all patients qualify for hemo-dialysis (when the blood is removed, cleansed and replaced mechanically through a port into a vein). The only other option is peritoneal dialysis, which would not be possible if there were already a transplanted kidney in the peritoneum. In that this would restrict Julian’s possible modes of treatment, it looked like we were headed the dialysis route. Julian is just below 10kg at present.
However, Dr. Ford encouraged us to meet with Dr. Koyle (Julian’s Urologist) and Dr. Karrere (TCH’s head transplant surgeon), to get their input as well. Our meeting with Dr. Koyle took place on Wednesday morning (1.24.07).
By the time we met with Dr. Koyle, he had already read Dr. Ford’s report of our meeting the week before. It turns out Dr. Koyle and Dr. Karrer have written papers and performed pelvic kidney transplants on patients below 15kg. According to Dr. Koyle, their smallest patient to date was approx. 9kg. Further, Dr. Koyle thinks Julian is a good candidate for the procedure.
So, this Monday (1.29.07), we’re meeting with Dr. Karrer, Dr. Koyle, and the transplant coordinator to discuss the general game plan that they have already come up with. Dr. Koyle anticipates that the transplant could take place as early as this spring, depending primarily on the availability of a viable organ. Three months after that, he thinks Julian’s bladder will be ready for reconstruction.
Stacy and I are excited! We had hoped that we would be able to avoid dialysis, only because it’s one more invasive procedure (an ongoing one at that) that Julian’s little body would have to recover from. He’ll have to weather enough already, even without dialysis.
Please check back next week to see how things went at the Dr.’s. And pray with us for Julian’s health. Every night at dinner, we hold hands, give thanks for our meal, and pray that God would grow Julian up big and strong.