Telluride was cool, and it is a long way away.Fall in the Colorado mountains is really pretty – lots of big views and yellow aspens, just like my favorite balloons.I wasn’t sure what a wedding really was, but now I know that it is a big party where a lot of people wear some pretty funny clothes.And I got to meet all the people there.Wow, they were sure nice to me and I had a lot of fun.
I’m pretty sure Momma did a little too much while we were there.Papa, Silky and me took care of her, though, and we got a lot of help from all my grandparents when we got home.We made Momma rest and take it easy for awhile and she is doing a lot better.I know she is doing better ‘cuz she can pick me up – and I am heavy!Polite, too.And brave.
I even had my first real bath.Not the kind where you sit on the edge and just get your feet yet, either.Nope.I mean the kind where you fill up the tub and you get in and play.Whoa!Lots of bubbles!I splashed.I spinned.I’m slippery.I’m fast.I asked Momma to do those things, too, and she said she couldn’t.I told her ‘Momma big’, and ‘Momma heavy.’She just looked at me funny and laughed.
Can we talk?This eating thing seems to be important to everyone else, but it seems like an odd thing to do.I’ve been on a feeding tube for as long as I remember and it is okay.I mean, I’m trying the eating thing once in a while.I think I like chips and lollipops.And playing with food is great fun, until you have to clean up.I guess I’ll keep on trying (when no one is looking), but don’t give me those brussel sprouts!
My list of medications is pretty long and the doctors are doing a good job keeping track of things.They are slowly reducing the amount I get… a very good thing.The anti-rejection ones are pretty serious drugs and the lower the dose I get, the better.But I still don’t like that nystatin!
I want to say ‘thank you’.Lots of people were at the hospital to support my family.I knew I was going to be okay, I just wasn’t sure about Momma and Papa.I got lots of e-mails from people, some of you aren’t even in Colorado, and with lots of prayers.People I don’t even know care about me.My doctors and nurses are the best ever.And I am getting my own swing set because a lot of you bought t-shirts.All I can do is say ‘thank you’ and send you e-mail smooches, too.
October 3, 2008
Guess what?! I can stay at other places now for as long as I want! It used to be only one night at a time, or else Mom an Dad had to pack the car FULL of stuff for my dialysis. Now, it is just my clothes and a diaper bag with my medicine! Talk about traveling light!
And guess what again?! My PD (peritoneal dialysis) catheter is GONE! The doctors said it was going to stay on for two or three months, you know, just in case something didn't go so well with my new kidney. Fat chance of that happening 'cause I'm not letting anything happen to my Mom's, now my, kidney. So they said if I kept doing so well they would get rid of it early and they did. I have been 'lasso' free for over a week now and it feels great - and only a small red spot where it used to be. Taking it out was only a day procedure so I got home that night. I'm thinking I don't like anesthesia any more. I got kind of confused and scared for a while after the surgery but everyone took real good care of me and I am fine now.
Well, we are off to Telluride for a wedding. Not mine, that would be crazy! We are staying for a few nights - without dialysis stuff, remember? I hope I can crunch walk there. You don't know what crunch walking is? That's when you walk on those dried leaves on the ground and and they go 'crunch, crunch, crunch.' Yes, that also means I am walking on my own. I wanted Mom to come get me, but she said 'Why don't you walk over here for me?' I thought about it, thought 'What the heck', said 'Okay' and off I went! Been walking ever since, although it is still very nice to walk holding someone's hand.
Well, I'm off! I'll let you know how Telluride was when I get back.
SEE THE TRANSPLANT PAGE FOR TRANSPLANT SAGA AND THE KIDNEY PICS PAGE FOR PHOTOS!
August 14, 2008
I just got to go to a NIC U picnic at the hospital where I was born.It was really fun to see some of the practitioners and nurses and doctors and all who took care of me when I was little.It was really nice to be able to say ‘Thank you’ to them all in person.We even meet some other kids who were there when I was there.I met Baby A and Baby B, twins who stayed in the NICU a lot longer than I did, and they are looking great!They have real names now but I forget.
Only two weeks to our kidney transfer!Mom and Dad are counting down the days, but I think I’ll wait a little longer to start counting.Ten days will be good ‘cause I know how to count up to ten – I hope counting down is fun, too.
Grampa is going to start a separate page right after the opening page so you can keep track of how well my Mom and I are doing.The hospital has wireless so he can keep the page really up-to-date, in between games of solitaire.He said he just needs to figure out ISPs and UIDs and PWs – he is a little old to be doing all this computer stuff but he’ll figure it out (I hope!)
I’m off to my fun zone ‘cause I have things to do and play with.Have a great weekend!
August 4, 2008
Boy, do I have a bunch of stuff to catch you up on! First, I am now 3. We had a wonderful party last Saturday. My grampas did the grilling and my grammas took me around to visit everyone. I had a great time and even stayed awake for the whole thing! My grammas also started a ‘swing set fund’ and we almost have enough so I can have my very own swing – right in my back yard. How cool is that?
This should be my last birthday on dialysis, too. My kidney transfer is now scheduled for August 28. We all have to stay healthy ‘cause you can’t have a transplant if you are sick. The doctors are pretty strict about that. I told all my family to stay healthy so I can see them in the hospital – I have trained them well and they are very good about listening when I put my foot down.
I now do dialysis all week – no more days off. My blood numbers came back really high a little while ago, so no more nights off for a while. I’m okay with no nights off but it makes things harder on my Mom and Dad. Sometimes I wish I could just get better all on my own. But the transfer is only three weeks away and I’m just going to think about getting all better after the transplant.
Did you know that I am almost walking on my own! I still like to hold both hands of someone when I am ‘stepping’ and do you know what they do? They try to fool me by letting go and leaving me standing by myself. Can you believe that? So far, I get their hands back pretty quick, but it’s not nice to fool little kids!
I guess that’s all I wanted to tell you for now, except for I would like it if you could be praying for me and thinking about my family on the 28. That would be great.Everyone is excited about the kidney transplant right now, but that day will be a long one for everybody – I’m pretty sure they are going to get scared.
June 27, 2008
Boy, is my Momma bummed out. She just found out one of my doctors is being sent to Iraq! He will do good stuff over there, I am sure, but that means he won't be here on August 7. That means a change in my kidney transplant, whoops, transfer to later in the month. It is not a long delay and I won't mind - I am still doing really well and enjoying everyone I meet. But date changes are hard on my parents, especially when you consider that this is a rather important date for us. I am used to doing things on my own time and in my own way, been doing that for almost three years. Guess I will just have to adapt to doing this the way the doctors want this time. Hummmppphhh, I'm gonna go eat worms. Oh yeah, I still don't eat things yet. Okay, then, we'll just have to get 'er done.
June 19, 2008
As you can tell from my pictures, a lot has been going on.I won’t tell you about all the regular stuff, like stepping (kind of walking with help), or ‘crazy’ (throwing three balls at a time) or all the doctors visits…
Well, I do have to tell you about some of the doctors visits, especially the one when they set my transplant date – August 7!That’s almost two months from now.You may ask how the doctors know there will be a kidney on that day.That’s because my Mom is going to be the donor.They say it is one of the best matches they have ever seen!So, instead of calling it a transplant, we are calling it a kidney transfer.
Oh, yes, the other appointment you may want to know about was with my cardiologist.One of my heart valves is leaking, so it will need to be fixed sometime. Doctors thought I may need open heart surgery in six months BUT everything seems to be stable for now.That is really good ‘cause I can wait for the heart operation for a while.When I get Mom’s kidney, I can take some medicine that will help my heart (I can’t take it now because I need some kidney function to process the medicine).This surgery may not happen for quite some time, even years, and everyone is really happy about that.Me, too!
I am having my third birthday party in July.Actually it is my third year birthday party – when I was little, I had birthday parties every week and then every month so I’ve had a lot more than three parties.This will be the last one while I am on dialysis, though, so it is going to be really special.Come to think of it, al the others were really special, too.The plans are being worked on and I’ll let you know when everything is set.If you want to know more, just call my Grandmas or e-mail Grampa.They’ll be glad to let you know everything!You know, I should be walking all by myself by then.If you can’t be at the party, I’m sure there will be pictures.
Got to go – there are cabinets I need to empty onto the floor!
Yea, Celtics!Grampa told me to say that.
February 29, 2008
Okay, somebody should have told me.This is a leap year and nobody told me about this very cool holiday – once in four years!Did I miss the party?You have got to tell me about these things.Grampa told me a trick question – How many months have 28 days?
There has been a lot of stuff going on, so I wanted to tell you about it.I see a lot of doctors because everyone wants to take good care of me.I’ve even learned how to use a stethoscope, just like the doctors do.Maybe I’ll be a doctor when I grow up.They have a really fast elevator at the new Children’s Hospital that is lots of fun to ride.If I was a doctor, I could ride it every day!
My last visit with the cardiac doctor was going well, I showed her how I can use the stethoscope and everything, and then she got up and left the room to get another doctor.I guess the valve that had the angioplasty is doing okay, except that it now leaks.The valve needs to be replaced, which the doctors told my parents before, but everyone (especially me!) was hoping it could wait for 10 or 20 years, but now it looks like sometime soon, possibly late this year.It took the doctors a while to figure out that I can take some medicine for now, but it will take open heart surgery to really fix.I am doing fine (I actually feel great) so I can have my kidney transplant first.This stuff is really hard on my Mom and Dad, though, and we get through it by a lot of support from a lot of people.So, please, if you get a chance, say a prayer for them, I know they appreciate it.
And speaking of things nobody told me – the simple ‘boy surgery’ I had last Tuesday is NOT fun.The doctor did another procedure down there, too, that I needed at the same time, but this is above and beyond the call!Can you say ‘Ouch, ouch, ouch’?Did I mention ouch?!
That surgery is making my “scooting” and “snooping” harder to do, but Mom says I’ll be back at it soon.Do you know how to snoop?I was doing it, and didn’t even know what it was called.I was looking in a cabinet at my aunt’s house and my Mom said ‘Are you snooping?’When I got back home, I looked in one of our cabinets.Mom asked me ‘What are you doing?’I just looked up and said ‘Snooping!’You should try it sometime.
Well, it has been a long month, but I keep doing what I need to do, growing, using my “muscles”, learning new stuff, and smiling at and loving everyone I meet.The doctors and nurses are doing what they need to do, too…they like my sense of humor, so I am going to keep that.I think my family cries sometimes, just not around me – they are special people and I am glad God let me stay with them.
All of them.That’s the answer to my trick question – all the months have 28 days, it’s just that most months have more days than that.Bye for now. “Hang loose”.
January 12, 2008
Make sure you read the full update grampa wrote at the end of last year. I am beginning my third (and last!) year on dialysis and I am off to a rousing start - my blood levels are the best EVER! It takes 14 hours a day of dialysis, but, doggoneit, it's worth it.
I can stand on my own now - well, I do have to lean on something or someone to stay steady. I can get down from the couch, too, which drives grampa crazy 'cause he thinks I'm falling. Mom and I just laugh.
Speaking of Mom, she is going in for her donor evaluation this month. There is actually a lot she has to do so the doctors know all they need to know. She has this goofy cleansing diet - friuts in the morning, veggies (in a garlic broth) in the afternoon, then back to friuts in the evening. Not only does it sound bad, you should smell her when she has all that garlic!
There is a little boy in Wisconsin who had a transplant just like I am going to have. He is just a little guy, only two years old, not two and a half like me. You can check on him at www.savebabygavin.com - I'm thinking I will do just as good as he is doing.