January 6, 2007
Boy, did I have a great Christmas! The big snow storm you all heard about made Christmas really white. I’ve heard only one in five Christmas’ are actually white (have snow on the ground) in Denver, but you couldn’t prove it by me. Half of my Christmas’ have been white. I opened a lot of gifts at both grandparents’ houses and didn’t particularly care whose gift it was. If people needed help with opening, I was right there for them. Part of growing up is helping other people, you know – besides, I love the paper.
New Year’s weekend was good for me, but not for my Mom. She was working in the kitchen when I started giggling, just because it is fun to giggle. She started to come into my room to see what I was up to, stepped wrong in the kitchen and broke her leg. Just walking. Every one wants me to start crawling and walking – I’m not sure it is worth it if I’m going to break something!
Mom is in a cast now and the doctors’ say her leg will heal just fine. They also want her to go to a neurologist to see if there is any nerve damage that might be causing her to walk funny. I sure hope they can fix the problem, ‘cause I like being carried by Mom and she can’t do that right now. We also don’t need to be seeing any more doctors – we see enough as it is. The good part of this is I do get to see my grandparents more often now as they help my Mom and Dad. Some friends have been helping, too. Mom and Dad say it is really great to have such a good support system. Thanks to all of you for being there for us.
Now I’m off to start a new year! One New Year’s tradition is to make some revolutions, ummm, maybe the word is resolutions. No thanks, not for me, I’m just going to keep on keeping on. Remember the last two lines from the poem Mom and Dad wrote for me:
Please don’t lose faith, you know I am strong,
I’m in a great family, that’s where I belong.
Thank you for keeping the faith and for all your thoughts and prayers. Grampa just read me the Dr. Seuss book ‘Oh the Places You’ll Go’ – I’ve been to so many more places than people ever thought I would go to. Thanks for going there with me, whether it was in person or in your heart!
December 5, 2006
I know this isn’t my first Christmas, but last year near this time, I was in the hospital. The doctor’s were moving my feeding tube from the tube on my face to the fancy one now in my tummy and they were putting in my dialysis catheter. It wasn’t too much fun, because that’s when the cardiac specialists found I had a problem in one of my heart valves. I did get a visit from a very nice Marine Corps sergeant with ‘Toys for Tots’ and he gave me some very nice Christmas presents, including a great, big stuffed dog. The dog was way bigger than I was last Christmas, but I am catching up real fast now. Sure wish I could remember the sergeant’s name, though.
This year is going much better! I'm still getting over my bout with brochiolitis, so that is going good. I’m in my jumping chair, I’m actually figuring out some of my toys, I’ve outgrown my first car seat and have a spiffy new one, and Mom and Dad are teaching me stuff. I can now say ‘banana’ (although I’m not sure why) and, since it is almost Christmas, I decided to work on saying ‘Ho, Ho, Ho!’, just like Santa. I think I still have some work to do because Mom says it sounds like ‘Whooo, Whooo, Whooo!’, but Mom says ‘Merry Christmas’ anyway and then I clap my hands. This is good stuff!
Just between me and you, I think Mom and Dad are still scared for me. I’m on dialysis, still need a kidney, have physical therapy, need medications kids don’t usually need, see more doctors than a baseball player with a hang nail and we are way too well known at Children’s Hospital. So, for my Christmas present this year, would you please pray for my Mom and Dad? It doesn’t need to be often, but it sure would mean a lot to me. God answered your prayers for me and I’m sure He would answer your prayers for them. All I can say is ‘Thank you”, but it would be a HUGE thank you.
November 30, 2006
Wow, I didn’t realize it has been a whole month since my last note to you. Things have been a little hectic. You see, I had my first ambulance ride about two weeks ago. Those things are really cool! All kinds of toys inside with very nice people to take care of you. You don’t have to stop at traffic lights or anything! And when they turned all the lights on, woooooo!
I had bronchiolitis (like bronchitis, just in a different place in your lungs) and the doctor said I had to go to the hospital NOW. I was okay one day and then, boom, I was sick. I had a hard time breathing and coughed so much I couldn’t sleep. The doctor’s said it was very contagious and they all wore these funny robes and masks and gloves and stuff - not good looking cloths like I was wearing. My family was there all the time, holding me so I wouldn’t get scared. And all the doctors and nurses were terrific – sometimes they came into my room just to see me. I liked those times the best – when they came in to take care of me they sometimes did things I didn’t like. The I.V. wasn’t too bad ‘cause the two nurses did a really good job of putting it in. But then, a nurse would come in to suck stuff out of my lungs. Iccckkk! I wouldn’t recommend that to you, although it made me feel better. I’m pretty sure nurse didn’t liked doing it any more than I liked having it done.
The doctor’s said I could go home after a week. I wasn’t quite well yet, but they said I would do better at home, especially since my Mom and Dad take such good care of me. Mom and Dad actually showed some of the nurses how to do dialysis because they had never seen it done before. Am I cool or what!
So, if you see some little band-aids on my cheeks in my pictures, don’t worry. They are to hold my oxygen tubes in place for a little while longer, until I am really well and over this stuff.
Let’s see, what else. I said ‘Mumma’ for the first time. You would have thought someone had stuck her with a pin the way she jumped up and ran over to me! I’m liking having her wrapped around my little finger (hmmm, I guess they are all still little!) And for good measure, I kissed her on the cheek. She’s always kissing me and I thought it was time to return the favor. She went crazy over that, too.
I won’t make you wait for a whole month for news about me anymore. There is too much going on to wait that long. See you soon!
October 20, 2006
I am really upset about the doctor’s evaluation of the EEG results. They said I am normal. NORMAL? Excuse me! I am anything but ‘normal’. Exceptional, yes. Very special, of course. Cuter than your average bear, absolutely. But ‘normal’ – not now, not ever. I am going to keep doing things in my own way, in my own time and better than anyone expects. (You can help me keep doing this by continuing to pray for me, Mom and Dad.)
Whew, I feel better now – just had to get that off my chest.
One of my doctors said I should have an EEG (electroencephalograph! No wonder they just use initials!) The EEG checks for brain waves and the doctor wants to make sure I'm okay. Mom and Dad were supposed to keep me awake for eight hours before the test - no problem, I don't like naps anyway! They stuck wires all over my head and kept them on with tape. It was kind of cool watching the waves when I did different things and the technician explained what was going on. Then they took the wires off - along with some of my hair on the tape! That wasn't fun and, as you can tell from my pictures, I AM particular about how my hair looks. The doctors will tell us soon if they found anything (come on, that's doctor humor and it's funny!.)
Gramma sat me up to take some pictures. I was just sitting there when Mom walked in and said 'My gosh, that's the longest he has ever sat up all by himself!' What am I supposed to do - fall over and bang my head? No thanks, I'll stay sitting up, thank you very much. You'll be happy to know I now weigh 21 pounds! And I am 29" tall. (I used to be 'long' before I sat up by myself - now I am 'tall'.) I grew 1 3/4" in one month! The nurse had to measure me three times before she was sure that was right.
All my grandparents celebrate the weirdest things. Like they celebrated the fact that I now weigh 20 pounds. You'd think it was a big deal or something. I'm just doing what I'm supposed to do. But they are fun to watch!
I didn’t realize it has been so long since I let you know what is going on with me. It has been a busy month since my birthday and everything is really going well. We went to Lake Powell for a week and, as you can imagine, there was a lot to do. Mom and Dad had meetings with the doctors to make sure they knew what to do because Powell is a long way from anywhere, and even when you get there you are still a long way from anywhere! But the boat is really cool and the generators worked just fine so the dialysis machine worked like it is supposed to. We had fun all week but the drive back and forth was a long drive. I sure am glad I have chauffeurs to do the driving and the packing – all that dialysis stuff takes up a lot of room. And I am sure some people were wondering what was going on when we hauled all the used supplies off the boat and into the trash. Oh well, you gotta do what you gotta do. My doctor is really proud of Mom and Dad for taking the trip – he encourages families to do things like this, but we are the first of his patients to actually do it!
I’ve had a couple more tests to make check out some stuff. Kids on dialysis sometimes have trouble hearing because the tubes in your ears swell and interfere with sound transmission. The doctor wanted to check my hearing out because he thought I wasn’t responding to him. My smart-alec Mom said ‘Maybe he just doesn’t like you!’, but that’s not true. And my hearing checked out as really good. My eyes check out good, too. Sometimes if you are on oxygen like I was, your eyes can be damaged. But my eyes are just fine.
I am trying to learn how to eat. You may think this is a simple thing but you don’t have a feeding tube and a dialysis catheter in your tummy. I’m just not hungry and don’t feel like eating, so learning is hard. I am trying and Mom and Dad are real patient with me. I’m making progress but I only eat a little bit at a time. Most of the food goes on my face and other places, kind of like art work. Especially when the food dries!
I weigh over 19 pounds now and that is more than half way to the weight needed for a transplant. Of course, if I eat AND get fed through the tube, I may gain more weight and get there faster!
Wow! What a party! No wonder you all like to celebrate birthdays, at least until you get as old as my grampas. I had a wonderful time and I hope you did, too. I even took a nap before the party, and you know how much I hate naps.
I really enjoyed meeting all of you (most of you again) and Mom and Dad did, too. It was a terrific reminder of how much you all care for the three of us and we appreciate all of you. People came from Boston, Atlanta, South Carolina, Texas, California, Chicago and all over to celebrate with us.
Yes, I know I cried when you sang ‘Happy Birthday’ to me. You guys were pretty loud, you know, and it kind of startled me. But it was a very nice sound, and, besides, I wasn’t the only one crying. Someone asked Mom what her birthday wish for me was. She said ’Well, duh, a kidney.’ Grampa is praying the kidney is my kidney, the one that’s there but doesn’t work. That would be a miracle, but, hey, miracles have already happened, so grampa is going to keep on praying.
Did you know I gained almost two pounds between the time the invitation went out and when we had the party? Yep, I weigh over 18 pounds now. That’s over half way to the weight to do a transplant.
Thank you all for loving me and my parents, for supporting us, and keeping us in your prayers. You guys are the best!
July 27, 2006
Grampa sends his apologies to all'ya'all (that's plural for ya'all) because he messed up my birthday message. He says it was computer error, but I think it might have been operator error! All is still okay, though, because the date (above) includes the year for a very good reason - I am a YEAR old! My birthday was Monday - not a week birthday like we celebrated last year, not a month birthday like I have enjoyed for the past year, but the real thing. A real, honest to goodness birthday!
I'm doing really well, too. I weigh 18 pounds now. Our trips to the kidney center are only once per month now because the dialysis (and I!) is doing so well. Mom and Dad are giving me the therapy I'm supposed to get (all kinds of things like laying on my tummy, sitting on a big ball, and other stuff.) AND I have two teeth! I've been drooling a lot and chewing on my fingers and... whaalaah... teeth! I'm not sure what they are for and not sure how many I get, but there they are. This is getting exciting! By the way, the doctors say that when I get to 22 pounds, a kidney transplant is possible in an emergency. They don't like to do transplants until people get over 30 pounds, but it is possible. That made Mom and Dad feel a lot better knowing it's an option. However, I am not having any of those 'emergencies', so don't worry. I'm just going to keep on keeping on, doing things my way and fooling anyone I can!
My birthday party is this Saturday. (Yippeee!) I am looking forward to seeing everybody. If I don't see you (Mom may make me take a nap, you know) thank you very much for all your thoughts, your prayers, your support and your love for me and my family. This past year was not supposed to happen, my time with you all was supposed to be a lot shorter than it is, my family has dealt with things that no one should have to deal with, and... well, you know. Through it all, I have met the most wonderful people you can imagine - doctors, nurses, therapists, friends of my family, photographers and more. I feel like the most loved little boy ever and the only thing I can say is 'Thanks, and may God bless you.' He has surely blessed me!
Just so you know, my trip to Steamboat was fun. We all had a good time. Mom and Dad said there was more work than they thought (there IS a lot of stuff to take and setup!) but they did just fine. The doctor's all say they are taking great care of me - that's not a surprise 'cause they love me a lot. Thanks for your thoughts and prayers for them!
I had a liver ultrasound last week. Some of my blood work can be associated with liver problems and the doctors keep checking, but everything is fine. I'm back on some medicine for my hematocrit level (a bit low again) and it seems to be working. My nutritionist is thrilled with my progress because I now weigh over 17 pounds! I think I am her favorite. They say I am over two feet tall now. Since I still spend most of my time laying down, I don't really know what 'tall' is, so maybe I am two feet long. That means my weigh and height are right on the 50th percentile! I've been below the curve for a long time and with all the help and care I'm getting, I knew I could make it. Mom and Dad are even trying to get me to eat that funny rice cereal. It is fun to play with and it makes a mess of my face and anything else I can spread it on. Maybe some time I will actually eat some, just to make Mom and Dad happy.
My birthday party is really set for the afternoon of July 29. It is going to be at a park near Grampa Paul and Gramma Myrna's house. If you would like to come see me, please e-mail grampa (address on the first page) to rsvp, get directions and all that stuff. Grampa wants to remind everyone my immune system is still depressed (like most premature kids) and I'm getting antibiotics to compensate. So, please no colds are stuff like that. Thanks!
I'm going on my first vacation! Mom posted a note in my guestbook, but I am so excited I can't help telling you myself. We are going to Steamboat Springs (a great town in the mountains, for you flatlanders!) to spend the weekend. It's my first trip away from home with dialysis. All the dialysis stuff is pretty portable so things should work just fine. Dad and Mom are a little nervous about this, but they know what they are doing - they will do great. I'll get them to take pictures so you can see how much fun we had.
By the way, Dad and Mom are planning my one year birthday party. They are trying to make it a surprise party for me, but I eavesdrop so I can have all the scoop. It is going to be on Saturday, July 29 - put the date on your schedule if you would like to come. I will continue eavesdropping and tell you all the details, like time and location and all that stuff. Gosh, it is only a year, but it seems like a lifetime!
Birthdays are really cool! We just celebrated grampa (Dennis’) birthday on May 4 – he is 5x years old. I can’t even count that high – not enough fingers and toes! He said I could tell the ‘5’ in his age, but not the other number because you might think he is too old. We celebrated at a middle east restaurant and ATE (if you catch the hint at the second number in his age) lunch. It was fun!
And then it was Mother’s Day. It was my first and Mom’s, too. I think I did my part by being here and making her feel really good about how much fun I’m having. I’m over 14 pounds now and actually have baby fat! The doctor’s said I was growing a little too quickly, though – they want me to gain about an ounce a day and I was gaining one and a half. One of the problems that happened from this was a really high BUN (blood urea nitrogen) level in my blood. Your level is probably below 5 and mine was 140, higher than when I came home from the hospital. The doctor’s made some changes in how much food I get to slow my growth back down to one ounce per day and changed some of the dialysis fluids to lower the BUN level. So far it is working and my BUN is much lower now. I think I scared Mom and Dad, but I didn’t really want to that. So, please keep praying for them and for me. And say a prayer of thanks for all the medical people, too, they are doing a good job with me.