Kajsa’s archived caringbridge posts

Friday, February 25, 2005 2:52 AM CST

Please be forewarned: This is a goodbye letter, and gets rather sappy…

So here we are, just 3 days away from our flight to Arizona and I think we are about as ready as we could be. Kajsa’s doing very well, physically. In fact, the other day, she stood up on her own and walked across the room. She has since been practicing a lot.

I am going to really miss all the folks in WA who’ve been so helpful. We had our last visits with both Kajsa’s Nephrologist and Physical Therapy team this week.

There will be a few changes with physical therapy. Here, we have gone to Children’s Therapy Center of Kent. They cover all her therapies, have playgroups for children of varying physical abilities and even made her orthotic shoes. In Arizona (at least the rural areas), the therapists come to our home. I don’t know whether or not there are any play groups. I hope so. If not, I’ve talked with Cheryl, who was Kajsa’s teacher at CTC. She told me that she would be happy to help me format a group if needed. How kind! We’ll miss Stella, Jenn and Gayloyd who have helped Kajsa to come so far.

With regards to Nephrology, we cannot fully express the gratitude felt. I’m placing a photo of our last visit with Dr. Becker onto our photo page. She has seen us through so much. Today, when I spoke with her on the phone, she said that I had taught her a lot…especially about the perseverance of the human spirit. This was very special to me. I do have to say that I could never have stuck through much of the past year and a half without the emotional and informational support provided by Dr.’s Becker and Holleman and (of course) the unbelievable font of knowledge and empathy that is Teresa Simek, our nurse/case manager. I wish you all well. I remember the first time I met each of you. If I’d known then how much you’d mean to me, I would have given you a big hug right then and there. As it was, I cried a lot and resisted everything you suggested. Thank you for your patience while I learned. You have made me a better person than I knew I could be.

In Phoenix our Nephrologist will be Dr. Morgenstern. I hear he’s incredibly qualified. Hopefully he can handle headstrong mommies with as much humor and kindness as we’ve been privy to thus far. The department social worker, Sandra, has been quite helpful already. She explained some tricks for navigating the AZ insurance system. I look forward to meeting her in person.

Our dialysis clinic will be through the Nephrology Department at PCH. This should prove convenient. As you may know, we’ve been coordinating dialysis and nephrology at 2 different hospitals in 2 different cities. This was by our own choosing. We had developed such a feeling of trust with the MaryBridge team that we didn’t want to fully transfer. Dialysis; however, allowed us to meet and work with still more great people. Nancy, our dialysis nurse, has been a truly terrific resource and friend, always adding comic relief just when I needed it. Thank you! And Lorrie (nutrition) and Kristin (social work)…both of you, in your own ways, have increased the light in our lives.

Now for the hardest part: I am going to miss my Bupp family so much. There are so darn many of you. It’s next to impossible to ever feel alone or unsupported. I have been quite fortunate to be surrounded by a web of love and caring. Erick who completely lights up my baby’s face, and always takes the time to say “hi” back. Katie, I’ll miss sharing stories and yummy treats. I know that Maya will truly miss her special times with the 2 of you. Elisabeth, we’ll have to come back just so Kajsa can climb your apple tree. Steve who tells me my kids are great – and is always ready to lend a hand. And Lynne…I’ll miss knowing that you’re right there, to hold each others hand when times are tough, to tell Kajsa stories about her dad, or just to pop in on & shoot the breeze. I love you.

And this only begins to scratch the surface. There is the whole extended Bupp clan and all of our wonderful friends. I know it won’t be the same, but we’ll visit as often as we can…

Always,

Rowan


Friday, January 28, 2005 2:19 AM CST

O.K., so I know that it’s been a really looong time since I last updated Kajsa’s web page. So here are the latest (and some of the not so latest) updates.

First I’ll address our familial news. We’re moving! As of February 28th we’ll be residing in Arizona. And I’m telling you, if you thought that moving with a healthy family was a hassle, try organizing a state to state transfer of a kiddo with a chronic illness. We have fun exercises in futility such as the following way I spent my day.

Several telephone conversations uncovered the following information:
1. We can’t make an initial appointment at Phoenix Children’s unless we get a release form from Children’s Seattle.
2. This cannot happen unless we have a nephrologist to send it to.
3. But we won’t have a nephrologists assigned to us until we make our initial appointment which, of course we cannot do without a release form.
You see what I mean. And this is only one teensy part of Kajsa’s galaxy of care. Whew…

Alright, enough ranting… On to what you probably checked in for. Kajsa’s doing great! Her labs have been fantastic lately. In fact, they’re good enough that she’s down to only 4 daily oral meds (!) and a couple of shots. Her dialysis therapy has been modified to a very mild treatment.

She’s also coming along very well with her physical therapy. In fact, she even took a few steps on her own today. It’s so adorable! She had to control the situation & decide to let go, but then our sweet little Frankenstein came galumphing (quite quickly) with both arms outstretched directly at me. So inspired, she turned around & walked to Daddy, then me, then Daddy, etc. Such fun!

Now, I don’t know what the transplant policy is in AZ. Here, she would be eligible to begin her workup in 4 months. I do know that each hospital &/or State has its own policies. I’ll be curious to learn what differences there may be at PCH. I’ll let you know when I find out.

Again, thank you all for your continued love & support. Hopefully, we’ll be able to establish an internet connection in Yarnell. If not I’ll be working from the library. That way I can keep things as up to date as possible!

~Rowan


Wednesday, May 19, 2004 6:38 PM CDT

Hi everybody!

Kajsa just had her monthly scheduled doctor’s appointment.
She’s doing so well!!
Let’s see, what are the newest changes.

She starts Human Growth Hormone today.
It’s in a little epi-pen & supposedly doesn’t hurt very much
according to the teen-agers that Teresa works with.
This will not only help her to grow at a more normal rate,
but will also increase her metabolism and muscle mass.
Apparently we’ll be harboring our very own human version of a bulldog,
as she will have even more muscle tone than typical children.

Dialysis is going extremely well.
We’re increasing the vollume fill tonight,
so it should be even more effective.

Physical therapy is quite helpful
& she’s adapting to the homework well.
Hopefully she’ll be rolling on her own within a month.
Then we get to start working on crawling.
After that she’ll probably begin to take
the initiative more than she has, historically.

Feeding Therapy is slower & a bit more like pulling teeth.
Fortunately, we have one of the top feeding therapists in the country.

Her mental state lately is fantastic with lot’s of clapping,
laughing & yelling “Bupp” at the top of her lungs.
We’re really looking forward to her birthday party on the 29th.
Come on by.
We’ll be barbequeing all day.

~Rowan


Wednesday, March 24, 2004 7:10 PM CST

Again, it’s been too long. Mostly that’s because things are going well.

Kajsa’s been on nightly dialysis for a couple of weeks now & is SO active that I sometimes wonder if someone switched kids on me!! She’s gone from sleeping 17-20 hours per day to keeping us up at night with her ACTIVE PLAYFULNESS.
Its hard to acurately describe the difference. Kajsa had a visit with her primary nephrologists today. She just giggled her way throught he appointment, shocking all present! I hope that this is a sign of things to come.

If she stays healthy (relatively speaking) and happy, we should be able to begin the work up for a transplant as soon as she meets the age & weight requirements. I realize that with transplant candidacy comes the hurry up & wait type of stress, so I’m determined to coast along on this gentle limbo that is dialysis. My hope is that PD (peritoneal dialysis) conitnues to be this easy & helpful; enabling all of us to rest & recouperate from last winter’s emotional roller coaster.

I have no new photos at this time, beacause we haven’t yet unpacked all of the computer equipment. Fortunately, Lynne & Paul live next door & are generous with this one. Perhaps I’ll try to take a new picture with their digital camera. Oh, that reminds me…Kajsa is to be an example cited by our nephrology nurse as she travels next month to Washington D.C. to lobby for nephrology/dialysis patients. I get to take some photos of her dialysing. We will be used as an example to show that the financial upheaval that can accompany the arrival of a child with a chonic illness. I’m excited to help in any way. Perhaps we can set precidence for further assisting future patients!

Well, I’ve been over here for a while. Chris & Maya are watching Kajsa, but my time’s probably up right about now.

Love to you all!!

~Rowan


Saturday, February 21, 2004 7:25 PM CST

Hello all!!

Life’s been outrageous. We moved, Kajsa was in and out of the hospital almost constantly, and I still have the usual duties of a mom & wife. It’s kept me from updating this site well & I appologize if this has been frustrating for anyone.

Enough of this…onto the current news:

Kajsa had surgery Wednesday for placement of her peritoneal dialysis catheter. It went fantastcally (the sugeon even said boring) and she appears to be healing very well. She’s still quite sore & a little bit crankier than usual. But with her great dispositon, someone unfamiliar would never know.

We should be seen on an outpatient basis only for the next 6 weeks. During that time, Chris, Lynne and I will be learning the ins and outs of the dialysis machine. Fun, fun.

If anyone still has questions about how her dialysis works; remember, there’s a really helpful link at the bottom of this page.

Once Kajsa’s all healed up around her catheter site, well begin PD (peritoneal dialysis) at night. This is apparently a very gentle, soothing experience that tends to soothe people to sleep. Big thanks for small miracles!

Since life is beginning to settle down a bit, I should be better update with regularity. Again, my appologies with regards to this winter. It really was an unpredictable roller coaster. Write to you soon.

Thanks again for the continued love and support.

~Rowan


Monday, December 15, 2003 10:42 PM CST

Hi Everybody,
ItÂ’s been a while since I checked in. We were recently in the hospital for a week to get all of KajsaÂ’s systems balanced. We got out one week ago & were really looking forward to our trip to North Carolina to see my folks. My mom was here when she was 2 weeks old, but no one else has seen her yet.
It looks like we are going to have to wait a while longer to visit the Roe side of the family, as I am currently writing from the PICU (Pediatric Intensive Care Unit) at Mary Bridge Hospital. Saturday night Kajsa was doing great!! We went to our friendsÂ’ Christmas exchange & she giggled & played with everyone there. Yesterday morning when we woke up she was irritable, feverish & slept most of the day. I thought she was probably teething, as these were all typical symptoms when Maya went through it. Worst-case scenario, I thought perhaps sheÂ’d contracted my ear infection.
I awoke this morning; however, to her grunting with intermittent high-pitched screams. Her fever was more severe. She also rocked back & forth & seemed out of touch with her surroundings. Also, her lips were blue & her skin was gray. I immediately called our pediatrician, Dr. Oriel, & was at his office by 9:20 am. They placed her on O2 and called an ambulance to drive us to MBER.
She is currently under with an amnesiac for the times when she briefly has moments of consciousness. We donÂ’t want her to remember being intubated or the subclavian I.V. they had to place. SheÂ’s had 4 X-rays and an echocardiogram. These ruled out cardio genesis (caused by heart problems), & showed us that it is probably viral in nature. This led to swabbing her for a viral screen. So far, we know that she is negative for influenza, but we are waiting for the rest of the results to be processed. Also, she received her first transfusion due to anemic status. We now know that Kajsa is O positive like her mommy.
Right now, thatÂ’s what we know. IÂ’ll write more tomorrow or maybe later tonight. Just thought IÂ’d catch you all up. Oh, our number is 253-403-1434 Room 794. The special code is 4730. Love you all.

~Rowan


Monday, November 3, 2003 11:30 PM CST

As many of you may have heard, Kajsa is probably going to be receiving a dialysis catheter by the end of the year. For the last month or so her levels have been fluctuating wildly. Well maybe not that wildly since there is a definite trend. Unfortunately, it is an upward one for most of the numbers that need to remain stable.
The Nephrologists & our case worker held a meeting last week before informing me that if her BUN rises once more, she’ll be going in for the surgery. It is highly unlikely that this will not happen. So we are mentally preparing ourselves for the inevitable. The type of dialysis that she would receive will be peritoneal not hemo. This is the much preferred method & for that I am thankful!
I found a really neat animated website illustrating how peritoneal dialysis works. I’ll put a link at the bottom of the page. Please, be sure to check out the page if you are curious about how this works. It’s actually pretty amazing. While I am not happy about getting to this step already; I still feel so fortunate to have been born in this time & place.
I’ll let you all know how this continues to progress.


Tuesday, October 21, 2003 1:38 PM CDT

Sorry it’s been a while since I last updated this site. I’ve been quite busy! As you know, Kajsa had her mic KEY put in on September 29th. We let that rest for a week before beginning her night time feedings.

The good news is that she is gaining very well now…between 30 & 40 grams per day. (30 grams = 1 ounce.) This has been one of our primary goals all along, so we’re rather joyful about that. It truly takes a lot of the stress I’ve felt surrounding nursing her away.

Unfortunately; however, her formula is not as perfectly suited to needs as my milk. Therefore we have been getting her labs taken every other day for the past week. This has me fairly jumpy & irritable. Poor Maya & Chris have been paying the price for it. Bless them! As for the lab results…Her creatinine has skyrocketed to 3.4 as of yesterday. Her potassium is also elevated, but water supplementation washes out her sodium. So, you see it’s a continuous readjustment & monitoring merry-go-round.

As of today, I’m putting an extra ounce of water into her feed per night. (She takes 5oz of formula @ 17 cc’s / hour each night.) Then we don’t actually have to go back to the lab until Thursday. Hopefully this will help. If we are unable to adjust the water to formula ratio properly, there’s a drug that we’d be adding to the formula each evening to negate the excess potassium. That would bring her up to a grand total of 7 meds (2 topical).

Speaking of medicines, Theresa has begun speaking with me about Human Growth Hormone. I believe the plan is to begin this as soon as her nutrition stores are up. We are so lucky to live at this time. We don’t have to worry about Kajsa’s height being compromised by her disease. I’ll post as soon as I know the plan.

I’m sorry that this post has sounded so down & bluesy. It really isn’t that bad. The things to remember are these:

• Most kids go through a period of dietary adjustment when they initially acquire their g-tubes.
• She is gaining fantastically! Plenty, but not too quickly.

I’ll let you all know how things progress.

Thanks again for your continued love & support!!

~Rowan


Wednesday, October 8, 2003 7:14 PM CDT

Well, as you probably know, Kajsa got her G-tube put in last week. We let it rest and heal for a bit & Monday night we began night time feedings. Two days down & no real problems. It’s truly a bizarre sight & I’ll have to get used to the noise of the pump, but it’s not bad.

It seems that we got the tube put in just in time, too. Monday at her weight check she had only gained an average of 4 grams per day. She should be putting on 20-30 daily. The nurse, Theresa, spoke with me briefly about Human Growth Hormone. It looks like after we get her nutrition up we’ll probably begin HGH treatment. I don’t know much about this yet. I’ll post as I learn.

When Theresa brought up the HGH; I got a little worried. It seems that as soon as we complete one adjustment another comes up. The only one I could think of that was left was dialysis. I told her of my concern & she quickly allayed my fears. Kajsa’s kidney function is monitored closely by the labs we get done every week or two. They measure her blood’s creatinine levels and hers are quite stable at 2.3 – 2.5. This is high for most of us, but good for someone whose kidney function is as compromised as hers. The point of all that is…she shouldn’t need any more drastically new gadget, gizmos or medicines anytime soon. Yeah!

On a personal note: She is happy, bubbly & adorable. She has recently become ticklish if I gnaw on her belly or nibble her neck. She rolls very well from back to front, but then gets really angry at the couch, bed or whatever surface she happens to be playing on when she is unable to roll back over. Lastly, heaven help anyone who gets a finger too close. She’s beginning to teethe & will chew voraciously upon your finger until such time as you pull it away or she gags herself.

Aside from all the weird activities like doctor visits, daily meds & plugging the baby in at night, we’re all having a great time around here. I hope you all are, too! Thanks again for your continued support & love.

~Rowan


Thursday, September 30, 2003 08:49 AM PST

Here I am at MaryBridge once again. First of all, I want to say that Kajsa is doing very well. The sugery went off about how I anticipated. We arrived at noon yesterday with a very hungry girl who was understandably irate. After waiting about 2.5 hours, the surgeon, Dr. Holland, came in to let us know that we were next in the line. We took that opportunity to discuss some of the possibilities & confirm our consent. Dr. Holland is a rather cautious sugeon; & let us know that if he had any doubt of a clear pathway, he would open her up & move organs manually. Chris & I agreed with him wholeheartedly that safety ALWAYS outweighs vanity. Therfore, when we got a call about 15 minutes after settling into the waiting room; we weren’t at all surprised to hear that it was to be an open sugery. I have the picture. Her colon lies directly superficial to her little stomach. She has a scar now that’s about the length of my thumb.
We had a somewhat rough night. When her Tylenol wore off at 11:00 pm she proceeded to scratch her poor head and face to pieces. But, otherwise it was fairly uneventful. I’m learning how to use all the attachments. They aren’t as difficult as I had previously feared. Kajsa’s asleep right now, so I took this opportunity to appraise you all of her situation. Chris had to go home last night to be with Maya, but I’m sure he’s racing here as I write. He’s so in love with his baby girl. I could tell that it was really hard for him to leave last night. Fortunately, he left us in extremely competant & compassionate hands. I feel the need to get back right now. I’ll write more as I have time. I just want to say; thank you Heather & Lynne for your phone calls last evening. They meant so much to me. I love you all. Be well.
~Rowan


Thursday, September 18, 2003 12:44 AM CDT

So, here’s the latest. Kajsa is going in on Monday, September 29th for her surgery. I met with the surgeon this past Monday to discuss the details. We will be checking in at 12:00 pm with the surgery scheduled for 2:00 pm.

Last time we were there she was sedated, and then the radiologist took some x-rays to see whether or not there was a clear path between the outside of her abdomen & her stomach. He warned us prior to the procedure that there was a one in twenty (5 percent) chance that something might be obstructing the pathway. Well our little girl needs to start playing lottery, because she was again the lucky rare one. Her colon (large intestine) was “floating”. In other words it was high enough up in her belly to block the path the radiologist would have taken to her stomach. So, now we are where we so often are…waiting once more.

O.K…so here are the differences: This time there will be a surgeon working on her. This is the man I met Monday (extremely knowledgeable man with the bedside manner of a brick). When she is sedated he will not only utilize the diagnostic machinery that the radiologist did, but will also be examining her endoscopically. What this means is that he will stick a long tube down her throat with light & a camera on the end of it. With the light he can actually see through her abdominal wall to help guide his way. (Think shadow puppetry.) The light/camera also assists with placement once he’s inflated the stomach – also done through the endoscopic tube.

Now, if it turns out that his path is too blocked for this method he will have to open her up to move her other organs out of the way. This would leave her with a scar on her belly, but that is much better than a nicked bowel. There are more potential risks this time than last and it all sounds pretty scary to me; however, I know how important her having the tube is.

Oh, that reminds me. She’ll be starting out with a little bit different tube than she would have before. This one is called a BARD. Instead of a balloon holding it in place it has a firm plastic anchor with valves. This gives her body a definite structure to follow as it heals. Also, instead of the key attachment that the other had, it will simply have a flap, much like a beach ball. No blowing up the baby!! Although it would be kind of fun to have her float along on the end of a string. No, no, no…my humor has gotten much too dark lately. Well, at least I still have some left, even if it is a tad more twisted than usual.

Back to what I was saying:
Eventually this tap will wear out (as they all do). And when it does, it will be replaced with the MIC-KEY (m.o.u.s.e.). This is a great & simple button to use and I’ll be glad when that’s the one we have. Unfortunately, when it comes to the changeover it’ll once again have to be done surgically. Pfftthhtt.

Hmmm, I think that may be about all the new stuff as far as medical procedures go. On lighter notes; Kajsa’s starting to roll, developing a true giggle and falling in love with her big sister, Maya. Don’t we all! When life’s not being challenging, it sure is good around here. I continue to count my blessings every day & to be deeply grateful for all of your continued love and support.

Sincerely,

Rowan


Tuesday, September 2, 2003 12:44 AM CDT

O.K., so we’re going in for the g-tube on Wednesday September 10th. The procedure will be done at 11:00 am in the pediatric radiology department. After that we’ll be staying overnight for observation. I’ll go on line to give people the security code so that you can call our room. Without it you can’t even be told if we’re in the hospital. I never mind phone calls. Hospitals are very boring & lonely places.

I don’t know what the rules are relating to sibling visitation, so one of us may need to ba at home that night with Maya or have her elsewhere. Perhaps we’ll find someone to stay over with her that night. I haven’t worked out those details yet. She comes home today & I’m so excited!!! I can’t wait to hold both my girls!

Another Kajsa update…we’re going to begin Epo injections soon. I’m not sure exactly when, but it’ll be within this next month. This is a pretty amazing drug & we’re very fortunate that it is now available. FYI: Epo is made by the biotech company our friend Jenn Youngs works for. (Hi, Jenn) Now, how this drug works is that it (to simplify) talks to the parent cells in the bone marrow that are trying to figure out whether to be red blood cells or white ones & tells them to be red (eurythrocytes). As I said; this is a grossly simplified explanation, but you get the idea. Once she has more red blood cells she’ll have more iron, oxygen, etc. What we’ll notice is that her cheeks are rosier, her lips pinker & most importantly that she has more energy. Many of you know of my intense fear of needles. Well, I’ll be getting over that. They always say that children teach you, I just never knew it’d be such a crash course.


Monday, August 25, 2003 8:02 PM CDT

So, this week we went in to clinic expecting to see a nice gain like we did last Monday. Unfortunately, that was not to be. Last week Kajsa weighed 410 kilograms (8 & 3/4 pounds), today 401 kilograms. She actually lost weight this week despite steady healthy nursing. So, we’ve scheduled a G-tube for next week.
We are not giving ourselves any ultimatums this time. They (the high weight gain weeks) seem only to be negating the low weeks. We want Kajsa to have an advantage; and after much soul searching, believe this is one way. I was really determined to try everything I could before conceding to the proceedure. I wanted to know that I wasn’t taking the “lazy” way out. Sometimes it’s hard to find the line between being selfish in one direction & being selfish in the other. It seems to me that we’ve reached a point where the only reason not to get the tube now would be for egotistic reasons.
This is especially true after going to the Kids & Kidneys function last Friday. There were so many 35 pound 5 year olds who wouldn’t be so far behind if they’d been diagnosed earlier. It really got me to thinking that with the advantage of time that we’ve been given, we really should be thankful & accepting of the advantages we have in this day & age.
We are hoping to get in on Monday for the proceedure before Maya comes home on Tuesday. I don’t want to take Maya’s first day of school experience away from her. I can’t wait to see her & I know that she’s really excited to be back with her sister. I’ll let you all know how things go. There’s a computer at the hospital, so I’m going to try to get away Monday night while she (Kajsa) sleeps. Until then…
~Rowan


Tuesday, August 19, 2003 8:40 PM CDT

It’s been a much better week around here. We went in for Kajsa’s weight check & labs yesterday. As you may recall, she had to gain at least 25 grams per day to be able to avoid the G-tube. Chris & I had kind of resigned ourselves to having it placed on Thursday. But, between my marvelous mammary glands & her fantastic drive to thrive; she gained on average 30 grams per day! (For those of you out there who may be non-metric, that’s an ounce a day.) Pretty good work for such a little person. We’ve managed to stave off further medical procedures for at least a little longer! I never thought that I’d count my life by the week, but here I am. So, with that out of the way, we’re all breathing a bit easier right now.
On another note, we are going to a special function for Kajsa on Friday. MaryBridge has what they call Kidney Kids events. We’ll be viewing the Glass Museum and then heading over to the hospital for a dinner & program. I’m pretty excited because I’ll get to interact & make contacts with other parents who’ve been through this. I hear they’re also planning a little something special for Kajsa. Pretty neat, huh?
~Rowan


Wednesday, August 13, 2003 0:32 AM CDT

It’s not been the best week around here. On Monday I was informed by Theresa (case worker & head nephrology nurse) that Kajsa’s weight gain was insufficient. Our goal is for her to gain between 20 & 30 grams per day. Last week she averaged 15.7. If Kajsa doesn’t gain at least 25 grams/day by next Monday, she is scheduled to have a G-tube placed later in the week.
A G-tube is a tube that goes from the outside of her abdomen through her belly to her stomach. Through this she would receive medicine & nightly feedings. There would be a tap on outside similar to one that you might find on a life raft or beach ball.
I have strangely mixed feelings about this probability. On one hand I want whatever is going to help my baby girl thrive.Therefore, I will, of course, do whatever it takes to make this happen. On the other I have all sorts of pride & ego wrapped up in this change. I want so badly to be enough for my baby – to be able to provide for all of her needs. I also want to write down in her baby book the date that she finds her belly button – not the day she finds her tap. I know that these are much smaller issues than Kajsa’s health, but they still disturb me. I’ll get over it. It’s just going to take me a while.
If she does need to go in next week for the placement; we’ll be checking into Marybridge on Thursday for placement & spend the night, leaving on Friday. It’s a simple procedure, performed by a radiologist. We stay overnight; however, so that they can monitor the tube & her body’s response to it.
I’ll be doing a follow up entry to let you all know how things progress along this line (hopefully on Monday evening).
I continue to be so grateful for your thoughts, prayers & energy. I cannot express how much it means to us to know that we are not alone.
~Rowan


Wednesday, July 30, 2003 3:15 PM CDT

We had another appointment
on Monday. There were no labs
done as we’re currently waiting
for all the insurance issues
to get resolved. We did; however, check all the other vitals.
All good! Monday at Nephrology
she weighed 7-12 and yesterday
at the pediatricians 7-14.
This is probably due to a minor difference in scale callibration,
but either weight is fantastic.
She gained 28 grams per day over
10 days. This is fine with
the Neph. team, but I’m striving
for more. We go tomorrow to
have her labs done. So I’ll
enter those here later.
On another note, she had
her first set of boosters
yesterday. She spiked a fever
(which made her throw up her meds)
& was cranky, but otherwise; came through relatively unscathed —
and is sleeping peacefully in
my arm right now.
As many of you know, I am absolutely not in favor of
immunizations for a variety of reasons. Maya only ever had
Tetanus vaccination & is
beautifully healthy. Kajsa is; however, a different person.
There may be a time in her life
when she needs to be on immunosupressants(sp?) — for
the rest of her life. Therefore, against all of my instincts,
Chris & I Decided to give her
every advantage against diseases
now.
Our poor pediatrician
Dr. Oriel, had to sit through
about 3 seperate consultations
with me before I was convinced.
He’s a very patient man…and an excelent pediatrician. If he
hadn’t been so on the ball we
still might not know about her
kidney challenges.
Well, I’ll let you all know
if there are any changes in labs.
It may be next week, though. The whole family’s off to Bellingham
this weekend for the wedding of
Erick Bupp & Katie Scully.
Life is full of so many beautiful things!!!

~Rowan


Sunday, July 27, 2003 2:27 AM CDT

I’ve begun this page to keep people informed of Kajsa’s condition. Currently she is doing quite well, although the past couple of weeks have been a real adjustment.

We had been having concerns since she was 2 weeks old. She wouldn’t gain weight & had barely reached her birth weight at 5 weeks. The 6th week consisted of dietary adjustments/experiments to see if my milk wasn’t rich enough. We tried measuring how much milk she was taking in, then how much formula. Finally we were trying her on a hypoallergenic formula when her pediatrician decided that we should do some lab tests.

July 6th (at 39 days old) Kajsa was admitted to MaryBridge in Tacoma–due to the tests performed earlier that day. We spent the next 8 days hanging on our various specialists’ every word. While there we ascertained that she has Kidney Failure.

Her disease is called by a couple of names:
Chronic Kidney Disease (CKD) or
Chronic Renal Insufficiency (CRI).

While this condition is considered progresive, we currently have few adjustments to make. She’s taking Sodium Bicarbonate, Iron (Ferrous Sulfate), antibiotic – due to a bladder infection, and lactobaccilus. There are a lot of scary sounding drugs/proceedures that are probabilities in her future, but fortunately they appear to be a little ways away.

I’ll add other entries later to describe these.

Since Kajsa’s diagnosis, so many people have poured love and support our way. Friends and family have pulled together to help us through these changing times. Thank you all. I want to let you know that I am always here for updates & information.

As for those of you I don’t yet know; I would be so happy to hear from people with this condition and/or parents of children with CRI. Kajsa’s dad, Chris, and I (Rowan) would be so grateful for any experiencial wisdom, as neither had ever heard of CRI before 2 weeks ago.

I’ll be writing more soon.
Until then…

~Rowan

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