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July 4, 2010
I LOVE CAMP!!!!I have been in Maine for almost the whole month!I have been at camp.I have been at the Maine coast and had dinner delivered by a boat.I have been up in space in an airplane.I have been at my great-grammie’s birthday party.I have been ….whew, I better slow down!
We got to go to Camp Sunshine.It is a medical camp for families with kids like me, you know, kids who get to meet doctors a lot more than you ever want to.Our week at camp was with other families with transplant kids – not just kidneys but all kinds of transplants.I made a lot of new friends and got to swim in Lake Sebago.Did you know I have a lake named after my family?It is called Tripp Lake (near Sebago) named after my great-grammie’s mom’s family - I think that is my great-great-grandmother.Wow, am I famous or what.I was also in my first talent show and read ‘Horton Hears a Who’.Well, I didn’t read it from the words – I read it from memory holding the book – ‘cause a person is a person no matter how small.Momma and Daddy said there wasn’t a dry eye in the house!
And THEN I stayed in a really cool house on Penobscot Bay on the coast.I got to be with Gramma Myrna and Grampa Paul, Uncle Matt, Aunt Sharon, my cousins and EVERYBODY.One of our dinners (lobster) was delivered by boat, right from the ocean.We went to the beach and dug a big hole, big enough for my cousin Isabel to get into.It was really fun!Did you know the ocean in Maine is really cold?
And THEN I stayed with Gramma Sharon and Grampa Dennis in grampa’s home town – with Uncle Dude and cousins Ben and Izzy.My great-grammie Stowe had her 90th birthday party and it was a great par-taay.I met my other cousins Sarah, Emily and Angelina – we played hula hoops and pool and all kinds of games at the party.I think the grownups had a good time, too, but I wasn’t paying much attention to them.Gosh, my great-grammie is 85 years older than me!I got to meet some of my grampa’s family who have been praying since I was really little – they were sharing stories about times when they were young like me!I am going to have stories, too.
And THEN I went back to Camp Sunshine for a visit.I got to say “hi” to a lot of the camp staff I met before.They are really cool people!
Well, I am back at home now, maybe getting back to normal.What am I saying – forget normal, I’m just doing my stuff!
[Note from Grampa: Camp Sunshine is a one-of-a-kind place, staffed almost entirely by volunteers – from medical professionals to two young women volunteers from Germany.Jacob made friends with many of them and we are sure they will stay in touch.New Balance, the running shoe company, recently contributed $500,000 to support the camp.A lot of what the camp tries to do will simply make you cry, like caring for kids with eye cancer – and you don’t want to know what the cure is.Check it out at www.campsunshine.org.]
Also, an interior decorator, raised over $27,000 for charity at a recent event in Parker.Her charity of choice was The Children’s Hospital, where Jacob has received such excellent care.Thank you so very much.]
June 12, 2010
Hey, I forgot to tell you I graduated from pre-school with all my friends!We had a graduation ceremony with everyone’s Mom and Dad and a lot of grandparents, too.I have a diploma and a special note from my teachers.All of us were ready to start kindergarten right away, but we have to wait through this thing called summer vacation.So, I guess I have to do this vacation thing instead of school.Bummer, I guess I will just have to have fun instead.
I have a new cousin, too.My Aunt Sara and Uncle Ben had a little girl just a little while ago.Her name is Aila (long ‘i’ before ‘la’).She weighs over 8 pounds, a lot more than my 3 pounds, and she got off to a pretty rough start, too.She was in the hospital for a few weeks and is now home doing okay.I call her “wee mighty miss.”I know I have asked for a lot of prayers for my family – I am asking again for prayers for her and her parents.
Did you know I am going to camp?!I am going on an airplane up to space and the stars, and when I come back down to earth, I’ll be at camp.I have no idea what camp is like, but if it is anything like school, it will be great.The camp is in Maine and the week I am going is for families with transplant kids – that’s ME!There are all kinds of stuff for me to do, for Momma to do and for Daddy to do, too.I’ll let you know how much fun we had.All I know is it is called Camp Sunshine, it is a camp for families with kids who have, well, you know, challenges.There is a full medical staff (duh!) and they are volunteers, there is a big lake (a real lake without a dam!) to play on and it is where my Great-Grammie’s family grew up.How special is that?
I am off to pack.My Momma says I need clothes, food, medicine – ah, never mind.I’ll just let Momma and Daddy take care of that.I am going on an airplane!
April 12, 2010
I have been away for a while. Things were going along okay and, then, wow. Instead of being in school, I was back in the hopital - and it wasn't even for kidney stuff! I am doing much better now and I am back at school with my friends and my teachers. They were terrific when I went back the first day and I was glad to be back.
I got to meet a lot a people in the hospital who I knew from before and a lot of new people who were just as nice. There are some who I don't remember because the doctors kept me asleep for a while. I am pretty sure they took good care of me 'cause Momma and Poppa told me about them. So, thank you all for taking good care of my Momma and Poppa, and me, too. My Momma and Poppa were really worried about me and I am very glad you all were there to help them.
Like I said, I am back at school as often as I can be. I still have to see doctors and nurses a lot and that gets in my way sometimes. I still have to be on the feeding pump for 18 hours a day a little longer. That's a bummer. But my tummy is starting grumble which every one says is a good thing - easy for them to say, it is not their stomach! My kidney has been great through all this, though, so don't worry about that.
Did I tell you I slide down a fire pole? Okay, it was a 'fire pole' at my playground and it was only 1 1/2 feet off the ground. But I did it myself! I told Momma to look at something else in the playground and then I snuck down the pole all by myself. I am not sure why, but she gave me all kinds of hugs and kisses after that. Maybe I will do it again - I can always use hugs and kisses!
Well, the good news is - I'M BACK.
[In between these updates, Jacob had major surgery. Please go to the 'Emer. Surgery' page if you want to read about what happened.]
December 26, 2009
Wow, what a Christmas!We went to Gramma Myrna’s and Grampa Paul’s house for Christmas Eve to start things off.Then we spent Christmas morning at my house!This is the first Christmas morning I have been in my own home – all my other Christmas’ were in the hospital or at gramma’s house.Being at gramma’s was really good but being in my house was the BEST.I opened some gifts before anyone came over and then ALL my grandparents came over.I helped all of them open their gifts, too!Momma and Poppa made a delicious lunch for everyone.I didn’t eat very much, but everyone else did.
Even before Christmas I was opening gifts!Momma and Poppa were wrapping gifts.When they left the room, I would unwrap them because, well, you see, that is what I do!Besides, I needed the practice before the big day – a boy has to on top of his game.They figured out pretty quickly what was going on and started to hide the wrapped presents so I couldn’t find them.
We left cookies and milk out for Santa.He does a lot of work on one night and needs a snack.I told Momma we should leave some Kleenex out for Rudolph.She gave me that funny look see gives me sometimes when she has no idea what I’m talking about.Everyone knows that Rudolph has a cold and needs to blow his nose once in a while.Just look at how red his nose is!
Just so you know, I am doing great.I still like school and have made a lot of friends.And I like my teachers, too.Eating school is okay although they make me work.There are kids of all ages in this school with all kinds of reasons why they don’t eat.Some are older than me, some are younger.I am learning about textures, tastes, what food really feels like, and that it is okay to take things out of my mouth.I have to use a napkin to do that so I don’t make a mess.This stuff is easier to learn when you are really young.
And why do four year olds still need to take naps?I thought this nap stuff would be over with by now!Of course, I try to stay awake while I am lying in my bed – Momma says I am a naughty non-napper.I am just not very successful at staying awake and sleep for a few hours.If you have any ideas about how I can stay awake, help, please.
Before I forget, my heart is doing better all by itself.A main valve has what is called stenosis which makes the valve bigger and less flexible than it should be.During some tests I had to have, the doctors found out that my valve is actually smaller than the last time they looked!They said it doesn’t happen very often, but it is very good news!
Well, I have to go.I have a new Elmo hoodie to try on and lots of new toys to play with.See you soon.
Direct from Grampa:
There are a few things that are difficult to write about from Jacob’s ‘perspective’, so…Jakie got a virus that is pretty common to transplant patients.We were hoping he was beyond such things, but no such luck.Like all things medical, the virus has its own initials – CMV (don’t ask me what they mean!)His virus count wasn’t very high, but it settled in his digestive system and had the result of giving him a lot of gas, sometimes constipation and sometimes diarrhea.The gas was a big problem since one of the procedures he had done for dialysis stops him from throwing up and from burping.Did you know the average person burps 20 to 40 times a day?Leaving out a lot of details, Jakie had bad gas pains for almost a month.The kind of sharp pain you have all felt, except Jakie couldn’t do anything about it.We were in the odd position of encouraging a little boy to ‘flatulate’ (use your own four letter word!) and venting gas from his stomach through his feeding tube.Even so, the pain was pretty intense at times.I had forgotten how hard it is to hear the words ‘Momma, Poppa, fix it please.’So, he has another insanely expensive medicine to get rid of the virus and fortunately that has worked.He is feeling much better now and pretty much back to normal.
Thank you for your prayers.Back to Jacob!
September 10, 2009
Wow!There hasn’t been an update for a long time, so I better keep better tabs on grampa!Maybe I’ll have to read a book to him to remind him to do updates a little more often.I’ve been doing a lot this summer and I hope I can remember it all!
But first things first - I’m going to SCHOOL!!!We went to an orientation last Thursday (Momma couldn’t be there but I’ll tell you about that later) and my first day was Wednesday (September 9).I told Momma that I am going to make a lot of friends and come home smart.I have two teachers in my class and fifteen other kids.Okay, it is just preschool, I go four half days each week and we are going to play a lot.The school has a nurse from Children’s Hospital and they are very careful about us kids not coming to school sick, which is very important to me.We even have to wash our hands the first thing in the morning.I will let you know how things are going in a little while.
I am a little bummed out, though.I really like my flame shoes (actually, they are my orthodic inserts) because they are really cool.My legs are now strong enoughso that I don’t need to wear them anymore.Not wearing them does make putting shoes on a lot easier, though.And my bones are now strong enough, too, so that I don’t have to take my calcium supplement anymore, either!All my other meds are at the lowest dose that works, so I am still doing really well.I still have my feeding tube, but I am starting to like peanut butter sandwiches and tomatoes.We get snacks and lunch at school, so maybe I‘ try to eat something new..
Oh, yeah, about Momma.She broke her hand!My hairy brother (Tonka, our dog) took her body surfing in our driveway when they came home from a walk.Tonka saw a cat and just took off, dragging Momma onto the sidewalk and, boom, a broken hand and a bruised face.She had surgery to fix her hand and now she has this really big bandage splint thing on it.It will be a few weeks more until she can take it off, and then a few weeks a hard cast and then some therapy.Poppa has his hands full taking care of us, so keep them both in your prayers for a while.
Other than that, we have had a good summer.We had my fourth birthday party and that was a lot of fun.And we went to Lake Powell for a week. My whole family was there, includingmy Uncle Dave (I actually call him Uncle Dude!) and some good friends.I had to wear my life jacket when I was outside ‘cause you have to be very safe on the lake.I had a pool on the roof of the boat so I could swim whenever I wanted to and I even got to swim in ‘deep’ water - in the lake.Everybody made sure I was floating good and I splashed and everything!And I got to drive to BIG boat, too.I was very nice and drove them where ever they wanted to go!
Well, that's all for now. I'm going to play now. See you later!
May 31, 2009
Memorial Day weekend was really fun.Everyone calls it a long weekend ‘cause it’s a holiday.All my weekends are long, but only if I want them to be!We visited with some of our friends, I got to play with their kids and we had a really good time.Huh, I am used to having to really careful about being around other kids.This weekend was fun ‘cause I can be with other kids now!Perfect!
I’ve been keeping up with my swimming lessons in the bathtub.I wear my swim trunks and everything.I’m getting real good at this swimming thing.My Momma says I have to get out of the tub after a few hours ‘cause my skin gets wrinkly.She is bigger than I am so I get out.But we are going to Pirate’s Cove this summer and I can swim all day long.
Speaking of new moves, Momma has taught me how to “moon walk”.Can you walk on the moon?I’m really good at it and I know how to “break it down.” I like dancing with Momma.Sometimes I really crack myself back up!
My rejection meds are now at the lowest level they can be for my size.That is really good because the rejection drugs are the hardest ones on my kidney.I don’t have to take NO-statin (it is really called Nystatin) any more, so I have one less med to take.
Okay, back to my swimming lessons in the bathtub!This weekend may be too cool for outside swimming, but I will persevere and overcome!It’s what I do.
April 20, 2009
Boy, I sure wish I was at Gramma Sharon’s and Grampa Dennis’ this last weekend.They had a really big snow storm.Not a lot of fan (sorry, that’s one of my words for wind) and not very cold, but a lot of snow.They had over two feet of snow on their deck!Can you imagine that?
Wait!Two feet?That is up to my neck!Yikes, I changed my mind.I am glad I was at home where it was only a few inches.Grampa showed me some pictures he took at on Saturday and then at on Sunday.What a difference – Colorado is a great place to live.
So, my doctors are still very happy with my progress and how well I am doing with my transplant.They have reduced the dose of some of my drugs again, which is okay with me.Maybe I can actually go off some of them some time – well, that is probably too much to hope for, but at least I am getting lower doses.Momma is doing pretty well, too.She still can’t eat too much protein, it makes her feel, well, uncomfortable.Everything else is okay.
Momma and Poppa had a real vacation.Some friends had airline tickets to San Francisco.They got a really good deal on a hotel room.I know they visited Fisherman’s Wharf ‘cause I saw pictures of the seals.I had a good time, too, with some of my family while they were away, like Gramma Myrna, Grampaul and Aunt Sara.We are now back together - I just don’t know who had the best time!
April 13, 2009
I wasn’t keeping track of time, but I guess a lot of other people been doing that for me.Like grampas and grandmas, ‘cause they do that kind of thing.Momma and Pappa, too.It has been over six months since my transplant and I can be with other kids now!Only there is a flu that hits us little guys pretty hard so everyone is being real careful.I am still under some restrictions, but not for long!!When flu season is over, I am off and running.
So, I am ready for preschool.I even interviewed with a preschool and can you believe it, they said I don’t qualify.They asked me about colors so I answered all their questions.They wanted to know if I knew my numbers – of course I do.One, two, three, four, five, six, seven, diddly diddly doo, eight, nine, ten.There!The diddlies are part of the music I learned my numbers by.More questions and I had all the answers.
They rejected me.I know too much.I had too many answers – that were right!And I am cute.So, sinced preschool rejected me, I am going too Pirates’ Cove.It is my favorite water park – not real big but very nice and fun.It opens at the end of May and I will be there all summer.In the water!Yahooo!!!If you had your choice – preschool or water park – which would you choose?!
The doctors keep lowering the dose on a lot of my medications, so I m doing quite well.My creatin level was supposed to go up a little bit six months after the transplant, but my levels actually went down!I will make them believers yet.And I am losing weight!After all the work Momma and Pappa went to get me big enough to have the transplant, too.But that is okay ‘cause I’m losing weight by running around every where I go!I am looking pretty buff now, except for my cheeks – they are still quite pinchable.Gotta go – so many toys, so little time!
February 24, 2009
I have had the best time this week!I just got to spend time with my Uncle Spencer (actually he is my godfather).Mom and I went to the park and played out side in the great weather we are having.And my Uncle Dude (David) is coming to see me, too.Not too much going on otherwise, just thought I’d let you know I’m doing fine.
Note from Grampa: That would be Jacob’s description of his day.Just another day of growing up.However, for us the day was anything but ‘routine’.The cardiologist called this morning and talked to Heather.We’ve been waiting for the results of the MRA and what we might have to do as far as heart surgery for Jacob is concerned.The doctor explained the results of the MRA and that Jacob will probably need to come into the hospital about every six months to have an echocardiogram and probably another MRA in one to two years.The problem with his valve isn’t as bad as they thought after his transplant, so the medication he is on is working well for him and that's how we will proceed for now.Somewhere in the conversation, Heather realized the doctor was really saying ‘NO SURGERY FOR NOW.’So, Jacob didn’t have a clue that we got the best news that we could have possibly received - he just went on being Jacob.We, however, have been crying tears of joy, celebrating and saying thank you, thank you, thank you.Thank you for your thoughts and prayers!!!
February 18, 2009
Note from Grampa:
Jakie and family spent the entire day at The Children’s Hospital.He had blood work done in the morning and then the MRA in the afternoon.He does very well with the blood draws and now even knows the correct order for the colored tubes!He tells the nurses what the order should be and they get a kick out of that.For the MRA, he was put under anesthesia, which didn’t start out well.The easiest way to do this is to give some by gas, with a mask, and then do the needle work.Well, he hates the mask.He struggled mightily and said “Don’t like it, Momma!!!” which made everyone feel pretty bad.Everything finally worked, though.The MRA portion took a very long time as the doctors wanted all the information they could get on his heart and valve. We are all glad they are being careful, but it is rather nerve racking. Coming out of anesthesia was pretty easy for Jakie this time.He didn’t act panicked and just sort of ‘came to’ gradually.We played with him and carried him around the hospital to keep him occupied (‘Go this way.’, ‘Open doors, please’, ‘Can I see every people?’)It is amazing how much he weighs now and how heavy he feels when he isn’t helping you hold him.He is now living up to his nickname ‘Chunky Monkey’. It is the best he has done with anesthesia in a long time!Everyone is home and back to ‘normal’ – we just have to wait two weeks for what needs to be done next.
Back to Jakie:
I got to see all my friends at Children’s!They said not to come back for three months, but I knew that wouldn’t work! They just had to see me. I had some blood work done and I like to tell them how to do it, even if they do a very good job on their own.Then I got to have lunch with Spencer (one of my godfathers), Gramma Myrna and Grampa Dennis.Momma and Pappa were there, too.I was in my stroller – I kept pushing away from the table and Momma kept pulling me back.What fun!
Then I had to do that MRA thing.I was okay until the doctors wanted me to breath through a mask – I don’t like that.But I had to do it.I’m told the MRA went well, but since I was asleep….It wasn’t too bad when I woke up – I just wanted to walk around and play, but I felt so funny.I asked people to take me around the hospital and that was fun.They opened doors for me, took me down some cool halls and I met all the nurses who took care of me.They said I was handsome and very polite.I like them a lot.
So, I’m home now and need to get some rest to recover from the MRA and anesthesia. I think Momma and Pappa need some rest, too. Thanks for praying for us – it is the first time in a long time I wasn’t scared coming out of anesthesia.I know Momma and Pappa were happy about that, too.
February 15, 2009
I got to see Madagaskar 2 at a movie theatre. Boy, is that ever a big TV! There all kinds of chairs you can chose from and you don't even have to make your own snacks - they are right there for you! We even had a private showing 'cause we were the only ones there. Do you think Pappa called ahead and made arrangements? Yeah, it was probably just that no one else came to the movie, but Pappa did ask the nice people to turn down the volume on the TV - it was way too loud for me.
I am still going to Children's Hospital this Tuesday for an MRA. It will be in the afternoon and I'll be back home that night. It's like you hear on the radio (that thing that is like a TV with no picture) 'This is only a TEST.' But it is kind of important so please be praying and thinking of me and Momma and Pappa. The doctors are checking a valve in my heart to make sure it is okay. If it isn't, well, the doctors may have to replace it with something that works better. If I need surgery, you know I'll be okay and the doctors say they do this all the time. I am a little worried about my family, though. This stuff is really hard on them, even though they try not to let me know that.
You know what else? We are going to get a season pass to Pirate's Cove. That is a water park near my home that I've been to before, and it's lots of fun! And I won't have a PD catheter! I can look 'cool' while cooling off this summer. Just so you know, the scars from the transplant and the catheter are fading away really well. You almost can't see the catheter scar and the kidney incision scar is very thin. Everyone is taking really good care of me.
February 7, 2009
Well, this is a fine how do you do! It is not even six months from my transplant and the kidney center folks don't want to see me! They say I am doing so well that I don't need to go there for three months. THREE months. They have been so much a part of my life I'm pretty sure I 'm going to miss them a lot. Momma and Pappa are probably glad 'cause they won't have to drive back and forth so much. But I'm gonna need to make some new friends.
The doctors have been adjusting my medications to lower and lower doses. Some of the meds, like the anti-rejection drugs, are pretty hard on your body so the doctors want to give me the lowest dose possible. I am there! I'm getting the lowest dose that is therapeutically (I learned that word in the kidney center!) effective - just another sign that I am still the wee mighty man, although not so wee anymore. My nutritionist is really happy about that, too. She said she doesn't get to see many kids do as well as I am doing. With her help, I've gone from less than three pounds, and way low on the size chart, to almost forty pounds and over 90% on the size scale for my age. The only problem is some of my favorite clothes are too small for me now.
I need some training courses and my pre-school time is not getting the job done. I did a really good job at climbing to the top of the rail of my crib. I thought I could do a really good job at climbing down to the floor, too. Was I wrong or what? I got down, all right, but very quickly. Like I fell. Wow, what a (short) trip! I scared myself silly. Fortunately, Momma was there to make me feel better after that surprise. The next time I climb out I am going to be a lot more careful! Maybe I should just get a regular bed so I can come and go as I please. Won't Momma and Pappa like that!?
My MRA is still scheduled for the 17th. We won't know anything for at least two weeks after the test 'cause all the doctors want to be sure and get it right. Getting it right is a good thing, it is just that Momma and Pappa will want to know sooner. They just need to watch me - I am doing great and my plan is to keep on doing great! We could use your thoughts and prayers, though. I'm okay, but everyone else is probably going to get pretty nervous.
January 20, 2009
I haven't been able to travel much because of dialysis and now I can't be with large groups of people in a small space (like an airplane). But, dialysis is history (yeeaa!) and February 28 is my 6th month transplant anniversary when I can be in large groups...like being in preschool with a bunch of other kids. I can't wait!
Gramma Myrna and Grampa Paul just got back from Hawaii (I think it is far away like Lake Powell, just with palm trees) and I missed being with them. So, they invited me over for an all nighter so we could catch up on, well, you know, regular stuff. It was a great time.
And Grampa Dennis got a free photo session with the photographer who took my first photos when I was in hospice care. It is a long story he can tell you if you like - the result is my Momma and Pappa and me got to have portrrait photos taken! I was on my game! The portrait photos are awesome. If you think you want a portrait of us all, there is a site you can go to for prints so you can check it out. Just e-mail grampa from any page and he can get you all the information you need. The studio's name is Expressions Photography and you can find their site on my 'Thanks to...' page. I guess I get to say thanks to them again!
I am three, you know, and I am picking out my own clothes to wear. I am partial to yellow and Elmo and Shrek, with pockets and long and short sleeves. A kid's got to be in style and I am making my own! As the saying goes: 'Clothes make the boy.'
January 3, 2009
This has been the best Christmas – EVER!Yeah, I know my kidney transplant has been a huge success.And all my family has been there for me through all this.But I got to have four, count them, four Christmases!!!
There was Christmas day at home with Momma and Pappa.Santa surprised me with a room full of balloons!Balloons around the tree, balloons on the floor, balloons everywhere!Balloons piled up against the wall!It was wonderful!Then there was Christmas with Gramma and Grampa Bottone.Then we had Christmas with my aunts and uncles.Finally, there was Christmas with Grampa and Gramma Sharon.They were sick on Christmas so I couldn’t see them then.So we had Christmas on New Year’s weekend.You know, Christmas is great all by itself, but when you can be with your family again and again, it is really special.
So, I am starting to eat by myself.Yep, it is hard to believe, but when you give me spaghetti and peanut butter – well, it just doesn’t get any better than that.I munch on other things, too.Like some veggies and lettuce and stuff.And chips, too.But that Italian food with PB is the best.
I am doing pretty good on my meds, too.The list of medications is still pretty long, but I am doing well with them all.The worst one and the best one is prednisone – the anti-rejection drug that helps me keep Momma’s kidney.The doctor’s have been able to reducing the amount of it I need ‘cuz I am doing so well.Keeping that dose low helps the kidney last longer, a really good thing.
There are a couple of dates I would like you to keep in mind.The first is February 17 – I have a heart examination scheduled for that day.It’s an MRA (like an MRI only with some contrast to make the imaging better), but I have to be sedated for the procedure.A valve in my heart may be acting up, you know, the one they did the angioplasty on, and the doctors want to be sure I’m okay.The second date is February 28 – that is the six month anniversary of my transplant.That means I am out of the immediate ‘danger’ zone for rejection, I can go out into groups of people and I can even fly on an airplane!This is big stuff – I am only used to being driven around in a car!
You know what?New stuff happens all the time and I am ready!I think.Thanks for being in my corner, and thanks for keeping me in your prayers.