December 31,2007

 

End of Year Update

 

We want to give you an end-of-year update on Jacob.  Yes, he does occasionally get hair cuts, even though a lot of you think it never happens!  Jacob still weighs about 28 pounds, mostly because he is becoming more active and burning up calories.  He is, though, still growing and out growing his clothes, a very good thing.  What is really important is that he is 36 inches tall – this allows a kidney transplant in his pelvis area, the preferred location.

 

He is still on peritoneal dialysis at home – 6 days a week and, unfortunately, for 14 hours a day.  His BUN (blood urea nitrogen) levels are still high, but the dialysis is working well.  He has many trips to The Children’s Hospital for a wide variety of tests and checkups.  Because of the dialysis, he is also still on a feeding tube to make sure he gets the nourishment he needs.  His diet is strictly controlled to balance food intake and blood chemistry and dialysis and his activity – a constant and never ending balance.

 

If Jacob keeps doing what he has done so well, a transplant may happen this spring.  Heather will be going to Children’s for a full day of tests – as the probable donor at this time, the doctors need to know everything about her.  So, a full day of poking and prodding for her. 

 

Jacob is one of the most good-natured kids you will ever meet.  His big blue eyes draw you in, his smile touches your heart and when he says ‘oh, oh’, you know he is throwing something on the floor that you then need to pick up.  Ask him for a hug and he puts his head on your shoulder, his arms around your neck, and then pats you on the back.

 

Jacob’s family has learned and continues to learn much more than they ever wanted to know about kidneys, and livers, and all the other things we need to know to care for him.  Jacob’s parents, Jason and Heather, have learned so much more than we have, and deal with the medical issues each and every day – day in and day out, no rest but a lot of help from friends and family.  Even in this situation, they know that some parents at The Children’s Hospital are dealing with more serious issues, which is hard to think of given the initial diagnosis for Jacob. 

 

Thank you for checking in on Jacob and his progress, thank you for your thoughts and prayers, thank you for your support given in so many ways.  As you think of Jacob, please also remember the other kids at Children’s.  Jacob is on a road of hope – there are other children (and parents) who are on a much different road. 

 

May God bless.

 

 

From Jason and Heather

 

Special thanks to TCH staff for helping us get this far:  Dr. Ford, Dr. Lum, Dr. ‘Melis’ (Kidney Center Docs at TCH), Silvia (PD nurse), Rose (Dietician), Terri and Diane (Transplant coordinating nurses), favorite ‘Vampire’ Brandie (lab tech).

 

Also thanks to Jacob’s therapists Kelly (OT) and LeAnn (PT) that come to his house each and every week to help him catch up on the physical stuff:  “strong muscles” as Jacob likes to say!

 

 

December 28, 2007

 

Whew!  Merry Christmas to everyone!

 

I saw lots of people during the holiday - I guess I forgot a little bit how many people care for me.  I got to show off all of my new moves…and now I am pooped (in more ways than one!).  I spent Christmas Eve and Christmas morning at Gramma Sharon and Grampa’s, and got to play with a lot of wrapping paper.  I still think that is the best part about presents.  Then we got to drive through the snow to my Gramma Myrna and Grampa’s house for the rest of Christmas.  Since it was snowing, and kept snowing, we got to stay the night.  Let’s see, more family and more paper and more presents.  Maybe Gramma is right – I may be, just may be, getting a little spoiled but, hey, we all like it!  And, I didn’t have to have dialysis for two nights in a row – wooo hooo!  That is not good very often, but once in a while I can do it.

 

Then I got to meet my cousins from Minnesota.  They have been praying for me, with their friends from school, too, and it was so fun to see them.  I showed them how to say “hang loose” without using words.  Their noses make funny, honking sounds, too.  Natalie, Kari and Annika all took turns hugging me, and I got to give them hugs and kisses right back. 

 

I probably won’t see you again until after New Year’s Day – I’ll be starting my third year of dialysis.  Can you believe that?!  This should also be my last year on dialysis.  Good to be off dialysis, but scary because of transplant surgery (whatever that is).  My transplant team is great, so I know I will be well taken care of.  It is just, well, you know…surgery.  Then a lot of recovery and learning new things – like a new set of medication, how to eat things like vegetables, hot dogs and spaghetti (real food) by swallowing it, and a bunch of other cool stuff.  It’s gonna be a great year!

 

 

December 20, 2007

 

See?  I told you.  The doctors wanted to do some more testing to make sure I am okay and to make sure my liver is okay and to make sure they are okay with their diagnosis.  Well, good news, we are all okay!  Me, the doctors, all of us.  The ‘big C’ test was negative (yes, they tested me for cancer), and my liver is doing just fine, thank you very much.  I kind of complain about all the medical stuff, but I really do appreciate the terrific care I get from everyone.  The people at Children’s Hospital are just great.

 

Now that you have mentioned Children’s, they surprised me in a very non-medical way.  Every Christmas, the hospital staff select a few families they want to help celebrate Christmas - you know, the families that are having an especially difficult time with medical stuff.  I know I am doing good, the hospital staff take good care of me, my family and friends are wonderful, but I know my Mom and Dad don’t get a break from all the day to day care I need.  So, I was really happy that Children’s picked my Mom and Dad this year for help this Christmas – it is a reminder that a lot of people really do care.   Phwoooo, thanks for your continued concern and prayers.

 

I got some really cool trucks as presents from Children’s and my Dad and I played with them for a long time!  Thanks ‘Operation Santa’ for all the goodies!

 

My grampa stepped out and jumped squarely into the 1990’s – he got a ring tone for his cell phone!  By himself!  The ring tone is from ‘A Big Black Horse and a Cherry Tree’, my favorite song.  It is fun to listen to his phone.  When you see me going ‘woooo, hooo’, that’s the song.  Give grampa a call – he likes the ring!

 

Well, time to go so…’wooo, hooo!’

 

 

December 8, 2007

 

Can you believe it is only two weeks to Christmas!?  Pretty amazing since we just had Thanksgiving.  And I got to play with my cousins, too.  Benjamin and Isabel came up from Texas with my aunt and uncle for the whole weekend.  We played all the time unless we were asleep.  Good time!  Of course, I had to watch everyone else eat turkey, but, hey, I’ll get some of that soon enough.

 

Mom and Dad have had a busy few weeks.  The doctors were worried about my liver enzymes for a while and then checked my liver and found a round growth where it shouldn’t be.  Of course that meant more tests to find out what was going on.  There was even some talk of surgery.  Don’t want that (yet.)  But they finally figured out it was just overactive liver tissue, so, though it may not be normal, it is okay.  They could have asked me, but, no!, they have to do things for themselves.  So, I’ll probably get more tests for a while until the doctors are convinced they are right.

 

I am still at 28 pounds.  I get around pretty good, but that uses a lot of things called calories.  The more I use to get around, the less weight I gain.  Hmmm, think I’ll keep on moving around and just ‘eat’ more some time or another.  The good news is that I am tall enough now for a kidney transplant in the right place (near my pelvis) even though I am not heavy enough yet.  I am doing good on everything, so the doctor’s want to wait for my weight to get to 35 pounds.  That’s okay with me.

 

I catch Mom and Dad off guard once in a while by saying sentences.  I can’t rely on them reading my mind forever, so I may as well start to be really conversational.  I usually clam up when other people come in the room, so everyone else thinks my parents are crazy, or just overly proud of me!  Just like parents should be.

 

Hi, Tina, thanks for caring and checking in on me.  It is very good to know other people still care about and pray for me.  Thank you all.

 

 

October 23, 2007

 

I haven’t checked in for a while because I have been very busy.  I have been to see doctors more than usual so they can make sure my new dialysis schedule is working well.  So far, so good, but it still isn’t much fun.  I like everybody and they take really good care of me, but all this medical stuff is hard to deal with sometimes.  I am taking good care of Mom and Dad, though, so we are doing okay.

 

I am doing some cool stuff, too.  We celebrated Gramma Sharon’s birthday at a really fun state park called Castlewood Canyon.  We had a picnic at the park, the weather was great (although there was a big fan somewhere ‘cause the air kept blowing things all around) and I got to mush cheese curls into the picnic table!  We hiked around some trails, met a few people and then I was pooped.  I asked Gramma Sharon which birthday it was because I just had my second birthday.  She just looked at me funny and said ’39.’

 

Then I went to the Denver zoo with Gramma Myrna and Grampa Paul.  I’ve been reading a lot about animals and learning how they speak (like bears go ‘grrrrr.’)  Seeing them for real is way better, though.  And they move all by themselves.  I tried talking to them but they didn’t seem to listen.

 

You may not have heard that the Colorado Rockies are in the world series, playing baseball in the month of Roctober.  Sweet!  We are playing a team called to Boston Red Sox.  I am not sure what kind of animal a ‘red sox’ is, but we are sure the Rockies will win.  Grampa Dennis is acting a little weird, though, wearing a hat with a funny ‘B’ on the front.  If you know what that means, please tell me – I am so confused.

 

 

October 7, 2007

 

It has been a while since the last time Jacob told you how he was doing.  So, I’ll catch you up and then he can take over again.  He’s much better at this than I am!

 

Jacob is doing great.  Although he is not walking yet, he is pretty fast (and cute) when scooting around on his butt, with the diaper providing a cushion.  He can stand pretty well, with just little support.  Not too long, though, because it is more work than he likes.  So, the gates are up and the watch is on!

 

He is almost 29 pounds and growing.  We did find out that if he gets a transplant now, it will not be in the place the doctors prefer.  They like transplants next to the right hip.  The bone gives the new organ good protection and there is a good vein and artery to connect the kidney to, with the bladder nearby.  At his size, though, the kidney would need to go into his abdomen – less protection for the kidney and, more importantly, he would never be able to have peritoneal dialysis again. 

 

We know this because Jacob had a rupture in the peritoneum (the membrane between his abdomen and chest cavity.)  The doctors found this during a cat-scan checking out his lungs.  They found dialysate around his lungs and did a quick drain of the fluid.  Basically, during dialysis, the dialysate moved from his abdomen where it is supposed to be, into his chest around his lungs where it is not supposed to be.  There was quite a list of undesirable options to correct this (an early transplant being one), including changing his dialysis schedule to reduce the pressure in his abdomen. Less dialysate is used per cycle and more cycles are used to obtain the same level of dialysis treatment. This is the option the doctors and Jason and Heather picked, so now Jacob is on dialysis 14 hours a day instead of 10.

 

And the best of the best things happened – with the reduced pressure, the rupture healed!  This was a hoped for outcome, but not really expected as the doctors said “Remarkable.’  But, hey, Jacob has been doing remarkable things all along.  The word miracle comes to mind once again.  Of course with 14 hours of dialysis in his bed, nap time in the remaining 10 hours is just not an option!

 

If you don’t want to get choked up, or even shed a small tear, skip this paragraph.  Jacob is beginning to put words together to express himself.  When he is done playing with something, he will look up and say ‘awl dun.’  That’s ‘all done’ and means let’s play with something else.  The something else could be a ball, when he will say ‘ball, peas?’  Being very polite he says ‘please’ that sounds like peas.  He also uses ‘peas’ to emphasize what he wants.  Obviously, arms held up means ‘pick me up’ – arms held up with him saying ‘peas’ means ‘I really want you to hold me.’  So, with all the extra medical work to monitor his condition over the past few weeks, there have been many blood samples taken.  During one session where several samples were needed, Jacob looked at the nurse and said ‘Awl dun, peas?’  The nurse almost lost it right there.  He said he can handle kids crying, squirming and all that, but he had never had a child look him in the eye and ask him “All done, please?’

 

We continue to ask for prayers for Jacob, Jason and Heather, ‘peas?’.  This episode put a huge strain on them (well, Jacob kept his smiling outlook) as well as on the medical staff.  They have come to love the little guy almost as much as we do.

 

We now return you updates by Jacob.

 

 

 

August 20, 2007

 

As you can imagine, things have gotten pretty hectic.  There is a big change in the way the medical teams work.  I was a dialysis patient, with one set of goals and now I am a transplant patient (in waiting!) and the goals are much different.  I’ll let you know about the changes as soon as I figure them out.  Right now, I just go along for the ride, seeing all these new doctors and nurses, but I am pooped anyway!  Mom and Dad answer everyone’s questions, with most of the new medical people asking the same questions over and over again – it seems everyone has to find out things for themselves!  So, a transplant may take a while because there is a lot to do and the doctors want to be very careful.  That’s okay with me.

 

My birthday was terrific!  This year’s shirt said ‘A Lover… and a Fighter.’, but if you don’t mind, I’ll stay more on the ‘lover’ side - it’s more fun.  I learned from last year, though, and I took a nap right before the party.  That way I stayed up for the whole party  and got to spend a lot of time being held by some very nice people.  And we had burgers and ribs and chicken and beans and potato salad and sangria and…  Wait!  I didn’t have any of that, so who cares!?  I got to hug a lot of people – that’s all that really matters.  No body shouted at me this year (they said it was just singing ‘Happy Birthday’ last year) and everyone said “Happy Birthday’ and signed ‘Celebrate’ in sign language.  You can do it, too.  Just raise your hands above your head and move your fingers and thumbs together like clams opening and closing their shells.  (That description is from grampa – he misses the ocean.)

 

And about my hair – Mom and Dad cut it routinely because it tickles my ears when it gets too long.  Besides, I think it is quite stylish.  Maybe all of you are just jealous ‘cause your hair doesn’t look as good mine.  It’s okay, I like you anyway!

 

So, thank you for your thoughts and prayers over the past year.  I am two now, and I weigh a little over 27 pounds.  Who would have guessed that! 

 

July 25, 2007

 

Wow.  Time flies when you are having fun!  It may sound strange, but all the people taking care of me are really fun.  Nurses and doctors at the kidney center like to see me (some even rearrange their schedules so they can play with me during my routine visits), the occupational and physical therapists are just a hoot (especially when they don’t make me work to hard), I took two weeks of swimming lessons AND my second birthday party is just around the corner!  Can you believe it?!

 

New shoes, too.  Not just those good looking foot decorations I have been wearing, but the real thing.  Shoes with real soles and real laces – big boy shoes!  I’ve decided enough is enough.  No more relying on Mom and Dad to carry me around, it is time to get mobile!  I’m practicing standing up – I still need help, but not for long – and I will be walking before you know it.  My plan is to walk without Mom or Dad knowing until I can walk really well.  This part may be hard since they keep a close watch on me, but I am sneakier than they think.

 

My dialysis is going great, at least for me.  The machine, as you can imagine, has all kinds of alarms to make sure everything is working well.  One of the alarms goes off if fluid out does not equal fluid in – retaining fluid is not good for anyone!  Well, it has been alarming all the time at night, so Mom and Dad have to come in and make sure everything balances.  That is once an hour during dialysis (each cycle takes about an hour), so getting a good night’s sleep is pretty hard for them.  I sure am glad they are taking good care of me.

 

So, my birthday.  And party!!!  My birthday was on Tuesday and the party is on Saturday.  I will let you know how much fun I had.

 

Time sure flies

When you’re having fun.

Celebrate my birthday,

I’m no longer one!

 

June 5

 

Well, here it June and I am doing great!  I am closing in on 30 pounds and I know my colors.  Well, I can say ‘purpul’, but I do KNOW my colors.  Mom asked me to pick out some purple (see, I can spell, too!) balls from some other ones and I gave them all to her.  Then she asked for the yellow balls and I gave them all to her.  Then she asked… you get the idea.  Some times she is so easy to keep entertained.

 

Pretty soon, I can sit facing ahead in the car instead of seeing where I’ve been.  Just a little bigger and Dad can turn my car seat around.  I’m looking forward (ha, ha!) to that day when I can see where I’m going.  Maybe that is not such a good idea when driving around in Denver!?

 

This is only something from me overhearing some people talk, so don’t tell anyone else.  The doctor’s may want to do my transplant this fall.  I am doing really great on my dialysis, so there is no rush.  But, whoppee, this fall!  Hey, wait a minute, that means an other operation. And a big one.  Let me think about this.  The doctor’s still want me to get to 35 pounds, so I have some time to think this over.  Hmmmm.

April 30, 2007

Yikes!  It’s been over two months since I let you know what is going on.  What was I thinking?!  The bottom line is I am doing great, so please don’t worry.

My vacation in Steamboat with my cousins was a lot of fun.  Benjamin Isabel and I got to know each other, my Dad and uncle went skiing, Mom went shopping with my aunt and gramma, and grampa got to take care of the three of us all by himself.  I’m pretty sure he forgot what is was like to take care of more than one of us at a time ‘cause he had a relieved look on his face when everyone got back.

And then there was Easter!

And the trip to the Botanical Gardens (I won’t tell you what I did, but I hope the flowers grow okay after they were replanted in their pots!)

I still weigh a little over 24 pounds and I have grown over an inch!  My hair is as cute as ever and my favorite words are purple, puppy and paaa.  (Grampa thinks ‘paaa’ means him, so please don’t tell him otherwise.)  Everyone is trying to make me crawl.  I don’t want to but they keep trying.  Sometime soon I’ll have to give in and crawl - right now, though, I don’t want to.  So there.

My dialysis is being adjusted to handle my increased diet and so far it is working.  There is more fluid per dialysis cycle and fewer cycles per day.  Mom and Dad like that because there are fewer ‘low drain’ alarms that wake them up at night.  A cycle is a ‘fill’ period when the dialysate is pumped into my abdomen.  Then there is a ‘dwell’ period when all the blood  waste products are absorbed by the fluid (this is the long part of the cycle.)  Finally, there is the drain period when all the fluid drains out of me into a waste bag.  The ‘all the fluid’ part is really important – if all the fluid coming in doesn’t go out, then I start to retain fluid and that is not good.  I need to be on my right side to get a good drain but I always forget.  Mom and Dad are really good at making sure the drains are complete with me on my right side.  

I met a family who is starting dialysis for their child.  They looked really scared sitting in the doctor’s office, so my nutritionist introduced us to them.  We talked for a while, they got to see how well I am doing, they got to see that dialysis, even though scary, is something that can be done and when we left, they looked relieved.  I am glad we could help and please say a prayer for them.

Well, I am off to the park now, so see you later. 

 
February 28, 2007

 

My Mom and Dad can use all the good news they can get and boy did they get some good news.  When you get good news from a cardiologist (in this case my cardiologist), it is especially good news.  My angioplasty has turned out better than anyone expected!  Well, I expected this really good result, but since I only say one word at a time and point, I couldn’t tell anybody.  I guess I need to work on that talking thing.  My heart is stable and the doctor could hardly hear my heart murmur!  And best of all, I don’t have to see her again until I’m ready for a kidney transplant.  One less doctor for now.  Yippee!!!

 

Even better, I’m going to spend some time with my uncle, aunt and cousins from Texas.  Coming from Texas, you know they would rather stay in Colorado than just visit, but we will have fun anyway.  Grampa said something about Coloradans skiing on powder and Texans skiing on something else.  I couldn’t hear the word he used ‘cause he was whispering, but I will find out sometime!  I will let you know how much fun we have later.

 

I have a favor to ask of you, if you don’t mind.  Well, two because I always ask for prayers for my parents and me.  The nice lady who took my first set of photos started the non-profit that does ‘remembrance photography’ for infants and kids whom God calls home.  She and the mom of the first infant she took pictures of would like signatures for a petition to CBS Education supporting some public education for this photography.  You have seen some of the pictures and they are still very important to us.  Just check it out and sign the petition if you like.  The link is on the ‘Say thanks…’ page and is www.nowilaymedowntosleep.org.  Grampa says look at all the check boxes so you don't sign up for something you don't want.  Be a little careful, though, the site makes my Grampa cry and you’ll probably cry, too.

 

January 22, 2007

 

My dad said ‘It’s snowing again!?’ like it’s a bad thing.  He has to do something called ‘shoveling’ and I guess he is tired of doing it.  Today is a bright sunny day so maybe he won’t have to do that ‘shoveling’ thing for a while.

 

I am starting my second year of peritonial dialysis and it is still working great.  We just found out we only have to go the kidney center at Children’s Hospital once every 2 months!  I still have to go get all the blood tests and things, Mom and Dad still have to record blood pressure and weight and other stuff, I still have occupational and physical therapy and more, so it is still a lot of work.  My kidney doctor said Mom and Dad do many of the medical procedures better than the medical staff, so he is very comfortable in making the change.  My parents are taking great care of me.

 

I still weigh almost 23 pounds.  I am, however, growing out of the 12 to 18 month size clothes.  The 24 month stuff looks pretty big to me (and to my Mom, too.)  One problem we will have to overcome is the bigger clothes come with pants that don’t open up from the bottom – you know, the snaps that let you big people change my diapers.  Those snaps are important so Mom and Dad can get at the dialysis catheter and feeding tube.  So, if you know of any sources of bigger clothes with the snaps along the legs, let me know.  I still like being the best dressed kid in town!

 

Speaking of feeding tubes, I ate some peas the other day!  Mom and Dad still are helping me learn how to eat food through my mouth, so it will be easier for me after my kidney transplant.  It seems a bother now, but I’m sure Mom and Dad are right.

 

My Mom’s broken leg is healing pretty well.  She can get around a little now and still needs some help taking care of me.  Picking me up with a cast on your leg is a challenge!  Dad has had a lot to do, too, cause he has to care for me AND Mom now, as well as the house and all the other stuff he has to do (something he and Mom call ‘work’, another of those words I will learn about sometime, but not too soon I hope.)  Please pray for him, cause that’s a lot to keep up with.

 

My Uncle Spencer, actually one of my godfathers, came to visit from Boston.  We had a really good time.  He plays in a rock band, but didn’t bring he guitar with him.  I let him use my drum and we made loud music together!

 

Bye for now – I’m going to cuddle with Mom and Dad.

 

 

 
 
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