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The Chronicles of Joey Lane Huddleston Reite
Joey Reite, Trisomy 13, Georgetown, CA, 3/6/2007
MEET JOEY! We are the new and proud parents of Joey Lane Huddleston Reite. Joey came to us “Via” the internet. It’s amazing what you can find online these days! Joey hails from St. Louis, Missouri. He was born March 6, 2007 at St. Johns Mercy Medical Center. His original adoption was all in place at the time of his birth and when Joey was born with trisomy 13, the adoptive family backed out. His birth family, feeling even stronger about not being able to care for him, put him back up for adoption. The attorney who was handling the adoption contacted the “Living with Trisomy 13″ organization and sent a letter over their website. Because of our son Tucker,(full trisomy 13, April 5, 2001-May 3, 2003) we are still involved with the trisomy 13 support groups and read this letter from the attorney stating she was was looking for a family to adopt this baby whom she and the nurses called Joey. After Tucker died, Jim and I talked about adopting a baby. But I didn’t want just any baby, I wanted another trisomy 13 baby. We have four other healthy, Normal (which is all a matter of perspective) children but I missed the uniqueness that only comes from these special children. But what were the chances of finding a baby like this when the syndrome is so rare to begin with. And out of those how many are miscarried or aborted. The percentage of those that actually make it to term and then survive long enough to be put up for adoption, and that’s providing the birth family did not want them, was so small that I always said “If God wants me to have another trisomy 13 baby, He’ll have to drop one in my lap!” Well That’s exactly what he did! Jim and I read the letter and felt God laying it on our hearts to call this attorney and inquire about Joey. I asked questions that only a mother of a trisomy 13 child would ask and gave her Tucker’s website (www.cowboytucker.com). She had contacted several other families that were set up for adoption but they backed out. A few other families did inquire but it was Tucker’s website and the questions I’d asked that kept drawing her back to us so she asked if we were set up for adopting. Our fleeing thought for adoption had long since past and we were looking at the empty nest since our last one at home was about to turn 18 in a couple months. So no, we had never started the process. We felt so sure that God was prompting us that we started the adoption process. This was about March 22nd. We had know clue where to really start so we talked to a friend from church who ran a christian foster care organization in our local area called Koinonia Foster Homes. He put us in touch with Rob who was starting to do fost-adopts for Koinonia. We met With Rob in his office and talked about what we were trying to do.The problem was, Koinonia only did instate adoptions so they could only get us started on our home study which we were told takes about six months to complete. But he was willing to do what he could to help us out. So before we left we all prayed together asking the Lord for direction if this be his will. Rob got in touch with Cindy S., The “whirlwind” of an attorney back in St. Louis who was waiting to hear back from us on our progress. Although she actually represented the birth family, she offered to do all our paper work on that end “pro-Bono” (free). And she was helping walk Rob through the interstate compact red tape which could take a year or two to complete. All of us who have Trisomy children know that time is of the essence and we may not have months or years. Well God knows that too and He is obviously bigger than the state of California or Missouri because with in two weeks our home study was completed,(paid for by the state of Missouri) the home inspection waved and by the end of April all the paper work in Missouri was completed and they were ready for us to come pick up Joey. We had not been planning a trip to St Louis on such a short notices so we had no money set aside to make the trip or cover our income while we were gone which added up to roughly $4,000. With the help of our immediate families, church families and friends and donations that came in from our small community, God provided all we needed. By now Joey had been in foster care for two weeks through a foster care organization called Family Christian Services that was ran by Sue. On May 5th we left our little mountain town in northern California and drove to St. Louis to meet with Cindy, her friend Kelly, who was the attorney to represent us, who also agreed to work for free, and Sue, on May 9th. The plan was to file for adoption placement and then return to California with Joey to finish up the adoption through the interstate compact how ever long that took. But there was confusion over which state was going to be responsible for him medically in the int-rum. So when we met with these attorneys they asked if we could stay a few more days in St Louis and they were going to get us in to see the Judge even though we were not on the judges docket, and push this adoption through to completion in a few days so we would not have to deal with the whole interstate compact red tape. We set up camp at Jelly Stone Park in St. Louis and prepared to stay the week. Joey was in a wonderful Christian home and very loved and cared for. After a few visits, we were comfortable enough with the feeding pump to take him to his new home away from home…”the camper”. Joey became very popular at Jelly Stone Park and soon almost everyone new him. He would have visitors daily. One couple we met there and had dinner with on a Saturday evening was Matt and Cindy K. On Sunday we had visited a Pastor Friend of ours church in Troy and when we had come back to camp, Matt and Cindy K. had already packed up and left. Monday morning we packed up and left to stay the night in Troy. On Monday we got the phone call to be in court at 8:00 Tuesday morning, still not on the judges docket. We rushed into the parking lot, still running on Georgetown time, stressing because we were late do to traffic and fearing that if we missed our appointment it could be weeks before we could get in again. But all of our stress melted away when we were met by Kelly caring a large bag. In it was a lot of goodies and snacks for the road, some stuffed animals and toys for Joey and a card with a prepaid credit card for $250.00 for on the way home from Matt and Cindy K! Come to find out, when Cindy K. left Jelly Stone Park and went home, she was telling her best friend how they met us and telling her all about Joey and how she wished she had a way to get a hold of us. As her friend listened, she realized that the people Cindy K. was talking about was her attorney sister, Kelly, clients! So Cindy K. and here friend put together this care package to give to Kelly to give to us! coincidence? I don’t think so, Divine intervention? you bet! Because we had stayed longer than anticipated in St. Louis, our funds were running low. We never told anybody that, but God new what we were going to need to get home. Kelly, Cindy S., Sue , Jim and I entered into the court house where we were greeted by a “grumpy” bailiff who informed us that the judge was doing physical custody hearings all day and we had a long wait if we got in at all today. Just then a court trustee walked by and heard the conversation. Cindy S. and the trustee did a few hand signals and the trustee went into the judges chambers and a few minuets later the furled browd Bailiff came out and said the judge would see us now. After about 15 minuets in the courtroom, The judge pronounced us as the new parents of Joey as if we had given birth to him and told us we were the sunshine in his day but actually he put the sunshine in our day. We headed home traveling route 66 camping along the way. On May 21st we brought ou new baby into our home. Joey in now almost 5 months old and so far is doing well. He is g tube feed do to some obstructions in his airway. He was supposed to have a swallow study done a couple weeks ago but it got rescheduled and we are waiting for the new date. He was born with extra pinkys on both hand but they got removed today as they were dangling. He has an embelical hernia and an ASD. but he is not on any oxygen at this time. He so far has had no apnea (something that gave us ALOT of grey hairs with Tucker) and he has some myocolonic jerks. He has some vision impairment but I think he can see pretty good as he focuses well on objects and reaches to nudge them with his hand. He knows how to push the button and turn on his fish aquarium as and will wake up at night and play it of and on through out the night. We think he holds his head up pretty good too. My biggest concerns are keeping him healthy through the winter and wondering whether to treat the myoclonic jerks now or wait until they become seizures. With Tucker we chose to wait and we never could get his seizures under control. Do we start early with Joey? Any advice would be welcomed. There you have it….adoption in a nut shell! Jim and Lori Reite
JOEY’S STORY Part 1 “For you created my inmost being, you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made” Psalm139
My story begins about a year ago. I was tucked comfortably within the perimeters of my mother’s womb. My mother and father along with six other siblings lived in a “not so good” area of what is East St. Louis, Missouri. I know my parents loved me very much, but do to financial circumstances, they felt they could not adequately care for another child. They loved me enough to not abort me but to carry me to full term and give me to a family who could take better care of me. So they contacted an attorney and began their search for just the right family. On March 6,2007, I entered the world at 10:34pm at St. John’s Mercy Medical Center, in St. Louis Missouri. My new adopted family awaited excitedly as they anticipated my birth. But shortly upon entering this world, the doctors noticed some things with me that were not quite right. The bottoms of my feet were very rounded and my heels protruded. The doctors called it “rocker bottom feet”. They said my hands were “polydactily”. I guess it’s not normal to be born with six fingers on each hand. They said the bridge of my nose was too wide and my forehead was too high, My hair line too far back, The top of my head too soft, and my muscles were too tight. Now if you add up all those “too’s” that makes me about a ten. I thought that was a pretty good score if you ask me! Apparently, the doctors had a different opinion. Because I wasn’t breathing so good they put a tube down my throat and hooked me up to a ventilator with various other wires, tubes and monitors and placed me in a warm bed in the special care nursery. The nurses placed a sign on my bed with what was to be my name for the next month, “Loveless, baby boy”. The Doctors told my birth parents and my new adopted family that I had trisomy 13, a rare chromosome disorder that is labeled “not compatible with life” It means I have an extra 13th chromosome. I thought, ”wow“ this is great, there’ll be a little more of me for my new family to love! But then they told them I would be profoundly mentally retarded and won’t live very long. Sadly, my new family decided not to take me home. I can’t say I blame them, I didn’t come with a very good warranty. So my birth family and their attorney set back out to find me another new family. Mean while back in the nursery, they removed the breathing tube because I was breathing much better on my own now. Then they removed my two teeth I was born with and placed a feeding tube down my nose. Food is just not quite the same when it bypasses the taste buds! I had lots of pretty nurses who liked to hold and rock me. I must of charmed them because they were always bringing me toys, and blankets and hats to keep my head warm. After a month it was decided that somebody needed to give me a name so my birth mother named me Seven, because I was the seventh boy. Hum…. Seven Loveless….I’m not sure I like that….apparently the nurses and attorney didn’t either so they started calling me Joey. More distinguished don’t you think? When I was about six weeks old, I got some really good news. My birth family had picked a new family for me. They said they live in California and knew how to care for me because they had had a little boy who was born with trisomy 13 just like me. Their little boy, Tucker, lived for two years before he went to be with Jesus and now they want to take me and love me and care for me as long as God allows me to be on this earth. I couldn’t wait to meet them but it was going to be another couple weeks before they would be out to get me so in the mean time, the doctors put in a new feeding tube that goes directly into my belly through what they called a Micky button and then I went to live with my foster care family, the Fitzpatricks. They took really good care of me until my new mommy and daddy picked me up. On May 9th, I met my new mommy and daddy. I knew they loved me as soon as they laid eyes on me. They scooped me up and held me for a long time and took lots of pictures. We camped at Jelly Stone Park for five days and visited with Yogi Bear before going to see the judge. When we finally went to court the judge signed the papers and told my mommy and daddy that I now belonged to them as if they had given birth to me. They kept my name Joey but gave me a middle name and a new last name. I am now Joey Lane Huddleston Reite. It was such a good feeling to know that I belonged to someone! My parents assured me that the camper was not my new home but that I had a nice home with my own bedroom right next to theirs. And awaiting my arrival there was new brothers and sisters, aunties and uncles, grandmas and grandpas and even a niece…Hum….I’m not sure how that works, but mommy says not to worry about the details, she’ll be someone for me to play with. 2000 mi. and five days later we drove up to my new home. We were greeted by a bunch of people who wanted to hold me and kiss me. For two days people streamed in and out just wanting to hold and kiss me. They “ooooed” and “ahhed” over me, I’m not sure what all the fuss was about, You would think they had never seen anybody from St. Louis with twelve fingers before! Then “SHE” came through the door, the one whom they said was my niece. They call her Sophia. She was not much bigger than me but boy she could get around. She calls my mommy, grandma. I still haven’t figured that out yet. She must love me too, because she smothers me with kisses. And she is always wanting to hold me. So mommy makes her sit down and gets me all situated on her lap and just as I get comfy, she’s rolling me back off saying she’s done! Then she piles blankets on me and says, “Joey go nigh- night” but I don’t want to go “nigh-night”! She’s always rubbing her hands on the top of my head feeling my hair. Then she pats me like a dog and starts kissing me again. But then mommy sees I’ve had enough of this one sided affair and she comes and rescues me. Shortly after I came home, mommy didn’t waist any time. She had lined me up with many doctor appointments. I first went to see my pediatrician, Dr. Loomis. Mommy says he is the best. Then she told me we were going to see a the G.I doctor. I couldn’t wait to put on my camo! I thought, here is my chance to play “G.I. Joe”! But then she told me that G.I. Stood for gastrointestinal and that this doctor wanted to check my umbilical hernia, and my Mickey button. I also see a cardiologist for the hole in my heart, a pulmanologist for my obstructed airway, a nuerologist for my seizure activity, an ears, nose and throat doctor, a chiropractor and a opthamologist because I am very near sighted. I see a physical therapist who likes to stretch and bend me in ways I didn’t think possible. And on Mondays, Amy from “Pride & Joy” comes and visits me and we do fun things. She puts me in a parachute and swings or rolls me back and forth, or bounces me on a ball. Then she dangles shinny things in front of my face so I’ll grab them. She is teaching me to roll over and hold my head up and she always has something new and fun when she comes. In July, mommy and daddy drove me back to Salt Lake City to go to a S.O.F.T conference. S.O.F.T stands for support organization for trisomy 13 and 18. We camped along the way and in Elko Nevada, I watched my first fireworks from our campsite. When we got to the conference I met kids who couldn’t walk or talk either and had feeding tubes just like me. Most of them already had their first set of wheels, and were being chauffeured around in their fancy Zippie chairs. My big sissy went with us and I met lots of her friends that she knew from going to past conferences with Tucker. This past summer I went to an orthopedic surgeon to have my extra fingers taken off. I kinda thought it was cool that I could count to twelve on my fingers, and “high six” everyone but mommy says it would be too hard to find gloves to fit me in the winter. I guess she has a point. So the doctor tied some string around them real tight and after my fingers turned real blue, they cut them off. I didn’t like it very much and I cried. I learned to go “frog gigging” at an early age. That’s what daddy calls it anyway. Mommy lines up my plastic green froggies on the railing of my changing table so that their beady little eyes are staring at me. Then after contemplating their position a moment, I strategically place my arm at just the right angle and “whack” them off one by one. “Wolfy”, my “partner in crime” puppy, sits in eager anticipation of the flying frogs and tries to intercept them before hitting the floor. It’s kinda like team work. Then mommy pries the frazzled froggies from his jaws before he has a chance to finish them off, and lines them back up on the railing again for round two and three. In September I had a swallow study done and it showed I could drink safely from a bottle and eat baby food. It wasn’t long before I figured out I didn’t like drinking from a bottle so mommy tried a “sippy” cup. I liked that much better, it makes me feel like a big boy. I’m eating several solid meals a day now and drip feed through the feeding tube at night. Mommy runs carrots and spinach and broccoli through a juicer and mixes the juice with cereal, and then adds some “concoction” under the disguise of “vitamins” and “nutrients”. She says it’s good for me, puts hair on my chest….I would rather have hair on my forehead! then at night she gives me my dose of garlic, she says a clove a day keeps the doctor away……and everyone else! The funny thing is, when mommy puts Sophia in the highchair, the dogs gather around and can’t wait to eat what falls to the floor. When mommy puts me in the highchair, the dogs flee…Is there something they know that I should know? When I started eating solid food I quit pooping as much and mommy and daddy starts to worry. So we make another trip to the health food store and mommy buys more “nutrients” to mix up another “concoction” and sticks it in my feeding tube to make me poop! Then she checks my diaper all day long asking if I pooped yet! I don’t understand what the big deal is! If I haven’t pooped she starts shoving more “nutrients” down my feeding tube. In this case, I’m glad I can bypass the taste buds! Then at night when mommy and daddy are praying, they actually ask God to give me a poopy diaper! Don’t I have any say in this? And when I finally poop, they are so excited they start praising God. After observing and analyzing their bizarre behavior, I have come to the conclusion that, it doesn’t take much to please mommy and daddy and there’s nothing like asking God for the little things in life! In September I went on my first hunting trip and camped in the mountains. Like daddy, I was all decked out in my Cabella’s camo, but the only thing we got was snowed on. In October mommy made me a Hershey’s kiss costume. I thought I looked pretty ridiculous but not as ridiculous as I looked when mommy and sissy carved out a pumpkin and cut two holes in the bottom of it for my feet and then stuffed me in it. They laughed at me while they took pictures, but I didn’t see the humor in it. I also went with my “Pride and Joy” play group to the pumpkin patch. We took a ride in the hay wagon and picnicked by the pond. In November Daddy finally talked mommy into giving me my fist hair cut. They couldn’t just cut my hair. Instead, daddy gets out the camera and mommy gets a hair pick and picks my hair so it stand up about three inches off my head. I looked like one of those guys from the “Mod Squad!” They thought I looked pretty funny…..They’re so easily amused!. In December I watched mommy and daddy put up the Christmas tree. When they turned on the lights it was so pretty, I couldn’t stop looking at it. It glistened and sparkled like nothing I’ve ever seen. Then daddy held me up and helped me put the angel on the top of the tree. Mommy told me that if I was a good boy Santa would bring me a present. So, I started thinking,…….. how easy it was to please mommy and daddy. The way I figured, a few poopy diapers and I would have it made with Santa! I had a Christmas party to go to at “Pride & Joy” so mommy invited Sophia to go with us. We played on fun stuff, ate some Christmas goodies, shook some noisy things to some Christmas music and then Santa came out and we got to sit on his lap. Well, I did and got a Whinny the Pooh ball but Sophia wanted NOTHING to do with him! Mommy and I made a list for Santa and hung it on the front door. A week later I got a surprise letter from Santa Clause that had been mailed from the North Pole. He said he had been checking his list and saw that I had been a good boy and he would see me Christmas Eve. Sure enough, Santa stopped by Christmas Eve and I got to sit on his lap. I had my big acting début in December. I played in the Christmas play at church. It wasn’t a very big part but it was the most important part. I thought it was cool because by the worlds standards, I’m so imperfect and flawed. But I played Baby Jesus, who was perfection for the world. When asked if I had a future? You bet… I have the greatest future of all, Eternity in heaven with Jesus. In January I started getting my first tooth. Because my bottom ones had already been pulled, my first tooth was my top eye tooth and boy did they hurt. I was really grumpy and gave mommy the “boo-boo” lip. So mommy gives me some drops of “happy water”. Something she “brewed” up herself. I don’t know what she put in it but it works. When ever I’m grumpy, she gives me a few drops and soon I’m happy! Amy said she should market it. We also got lots of snow in January and I got to take sled rides “over the hills and through the woods” to grandma and grandpas and to Auntie Kris and Uncle Ken’s houses. Sophia would come over too. She liked to feed me snow balls and watch me lick them. (mommy made sure it was white snow) Then we would go in the house and drink hot chocolate. Well…., Sophia got hot chocolate, I got something “green and garlic.” One day we all went to grandma and grandpas to slide down their driveway like mommy and Auntie Kris used to do when they were kids. I even got to slide down the hill in my little toddler sled all by my self and mommy would catch me on the short run. Sophia and my friend Brook got to go all the way down the hill but mommy said I have to be bigger to do that. I am learning to play “peak-a-boo”. I make a fist with my hands and hold them up to my eyes like binoculars and take them down when mommy says “peek-a-boo”. I’m sometimes slow and don’t always get it right but I’m working on it. Sometimes I even clap my hands when mommy says to. I still don’t roll all the way over yet but I will sometimes roll from side to side and I can hold my head up pretty good. When I’m eating and see the spoon or the “sippy” cup coming, I take my fingers out of my mouth and open my mouth to eat or drink. When I’m real happy, I stick my tongue in and out of my mouth. The happier I am, the faster it goes! And like most trisomy 13 kids, I lick everything that is within tongue distance of me. It’s my “gateway to the world“. I don’t say any words but I do make my own sounds. For awhile I was blowing raspberries but now I make a sound that mommy says sounds like Donald Duck. Daddy says I sound so much like a duck that next time he goes hunting, I can go with him and sit in the blind and call the ducks in for him. Sometimes my daddy takes me with him when he hauls hay or does service calls. He must be pretty proud of me because he is always telling people about me. Daddy says I’m his favorite passenger because I don’t bark at the cars passing by or leave nose prints on the windows like Mattie and Alley (the dogs). My favorite things to do are play with my kick board and “spin a letter” wheel, I’ve gotten pretty good at manipulating my toys to make them make sounds. Cause and effect is one of the biggest things I’ve learned this year. I also like to watch the “Little Bear “ movie while swinging in my swing, go for a bike ride with mommy and daddy, and “tool” a round the yard in my car seat strapped to daddy’s quad when we have fire wood to cut, horse pens to clean or leaves to rake and burn. I love jumping in my “jumperoo” seat. I can bounce it enough so my feet come off the ground and make it play music. It’s making my legs stronger all the time, and helps me learn to balance and hold my head up. Today March 6, 2008, I am one years old! I am now considered a “long term” survivor!. We are having a birthday party with family and friends. Daddy is barbequing hot dogs. I get to stick my fingers in chocolate cake and eat ice cream. I don’t know what God has in store for me for the second year of my life, I just know that each day I live I am a miracle, and as with each one of us, only God knows the hour in which we will see him face to face. But for today I am thankful to be here and for my life and I know I am wonderfully made! JOEY
Part Two “Happy birthday I’m two, Who would have knew? I would be here today, to celebrate with you!”
Wow, I can’t believe a year has past! I am now two years old. This year has been full of new adventures. But it did not start off so great. I had my first and only real illness. I first came down with a fever, which Mommy thought I was just teething. But as it kept going up (103) she decided to take me to the doctors. My doctor thought I had a virus that was going around and that I should be feeling better in a day or two. But by day two, my temperature was up to 105. So back to the doctors mommy took me. A few test later; the doctor said I had a urinary tract infection. After an antibiotic shot, which I did not like one bit, and instructions on how much fluid I should be taking in daily, we went home. Within 24 hours I was feeling great…for about two days. Then I had a fever again. Still on the antibiotic for the UTI, Mommy knew this shouldn’t be so she took me back to the doctors. My UTI had cleared up so they sent me over to the hospital for chest ex rays. To everyone’s surprise, since I had not had any cough or any other symptoms, I had pneumonia. Another shot, “ouch!” Breathing treatments, more antibiotics, and I’m good. So now added to my daily regiment of seizure medication three times a day is breathing treatments and extra fluids, via the G tube, to prevent these from recurring. Daddy started a new job this year and with that came some traveling. This summer Mommy and I went with him and stayed in a KOA with a pool. This was great news since Mommy had just found out it was O.K. To take me swimming with a G tube. And they found out what a real water baby I was. I absolutely LOVED it! Look out Mark Spitz, next year I’m going for the gold! Mommy would put on my life vest and pull me around the pool….ALL DAY LONG… while I made my motorboat noises (blowing raspberries) until we were shriveled up like little prunes. When Daddy got back from work, she would pass me off to him. Daddy liked to bounce me up and down in the water and I would laugh. I could not get enough of the water. When we were finally water logged, Mommy would put me in the bike trailer and we would go for a ride around the campground. Mommy and Daddy decided that wherever we went this summer it needed to have water. So over the course of the summer, I swam in lakes, pools and rivers. Well, the river was just a little too cold so I floated around on the raft with my mommy. I’m still nonverbal; in fact, I do not make any audible noises except when I laugh or on the rare occasion that I cry, and even that is not very loud. The funniest things will make me laugh. Like when mommy runs the juicer or blender, when the dog barks, or when something falls on the floor. Just about anytime there is pandemonium and chaos I just crack up. My main source of communication is sucking in and out real fast on my bottom lip. This is a happy sound I make when Mommy is giving me a “belly drink”, or when I raise my right hand into my field of vision, which is about 4” in front of my face, and discovered I could move it all by my self. This will keep me very entertained for some time. This sound is also the nice way I let mommy know that I am hungry and it’s time to feed me. I have also learned the fine art of blowing raspberries. This is also a happy noise and since I’m typically happy all the time, I’m usually blowing raspberries. Being that at times I’m still nocturnal, you can hear me making raspberry noises at three in the morning while playing in my crib, in the back of the church on a Sunday morning, or pushing me through the store in a shopping cart. And when those embarrassing noises escape me and everyone looks at me? I just play innocent and blow raspberries! Now blowing raspberries is normally not a problem…. until feeding time. Mommy doesn’t dare talk to me while she feeds me because it stimulates my communicative responses. And you guessed it, I start blowing raspberries! I have turned it into a game of sorts. Now it takes some skill and a good deal of “lip-eye” coordination, but the object is to wait until Mommy gets the spoonful of food right to the edge of my mouth, then I blow the biggest raspberry I can muster up! Mommy doesn’t really like this game because she always has to play defense and threatens to come to the table with a face shield. Kind of a poor sport don’t you think? Mommy’s decided she needed to expand my culinary horizon from “finger foods”, (my fingers) to table foods. Along with my daily juicing of carrots and spinach, I am enjoying such things as venison stew, bear ham, home cooked sweet potatoes and yams and avocado puréed to my liking. Now avocados are an interesting food, I like to take the green stuff and rub it all over my face. Mommy says people pay good money for avocado facials. But since I already have a nice complexion, I need the calories more and I really should try and keep the avocado in my mouth. This year I weighed in at 22 lbs. That’s more than doubled my first birthday weight of 10 lbs. 8oz. Mommy feels it in her pocket book when she goes to by diapers, and feels it in her back when she carries me up the stairs. Daddy says if I keep growing like this, he’s going to build me an elevator. I spend my days playing with my toys in my new play area my daddy built for me. or bouncing in my jumping seat. My beloved Wolfy Pup is usually at my side. Now and then he comes over and gives me a big wet kiss across my face. I think it’s funny and I laugh but Mommy doesn’t like Wolfy doing that. She says she sees what he eats in the horse pen and she chases him away. Daddy took me fishing this year. Although it was a good time basking in the fresh air, it was not a successful fishing day. But that’s O.K., I just like to spend time with my daddy, like in the evenings when we sit down and watch ‘The Backyardigans’. We get out my Viking helmet when we watch the Viking Voyage episode, and our cowboy hats when we watch the adventures of cowboy Tyrone. Daddy says were secure enough in our manhood, we can do these things. Mommy says I’m a good shopper. I can be gone all day with her in and out of stores and I never complain. I just go with the flow. People are always commenting on how good I am in the store. I don’t ever ask for anything, I don’t cry and throw tantrums, and I don’t run around pulling things off the shelf. With out going into detail, Mommy just smiles and says I’m the most well behave baby she’s ever had. One time this woman came up to my mommy and asked if I was her child. When Mommy said yes, the woman said I looked just like her. Now I’m thinking ‘woman, are you colored blind?’ but mommy just smiled and said I was adopted. The woman, after fumbling for words, said, “well, some children do look like their adopted parents”. ‘Good comeback’ I thought. Mommy graciously accepted the compliment and we went on. This past summer Mommy and Daddy took me to the county fair where we watched the rodeo, went on my first carnival ride, and ate ice cream. It was hot but we had lots of fun. We also went to the beach. The shifting sand between my toes and the crashing sound of the waves made me laugh. I actually liked the beach until the cold water crept up around my bottom and then I let my mommy know, in no uncertain terms, that I was not having fun anymore and I was done! My big sissy got married this summer and moved far away. Sometimes she talks to me on the phone and I smile and blow her raspberries. I miss her but I gained a brother in law who just adores me. Now that my sissy is gone, I have a new respite care worker named RuthAnn. Mommy met her about 30 yrs ago when she was the nurse in a doctors office that Mommy used to go to. I can see why they have been good friends every since. RuthAnn is fun to be with and gives me lots of lovin’. In the fall we made our annual trek up into the mountains to our favorite hunting spot which Mommy and Daddy have affectionately named “Camp Joey”. Mommy and Daddy each bagged a buck this year and while I was glad I got to pose with them in their pictures, I was just as glad I didn’t have to do the dirty work that followed. With fall comes the harvest, and with the harvest I start getting nervous. Mommy’s creative juices start flowing and I never know what kind of costume she is going to come up with. This year, after my niece, Sophia, my friend, Brook and I carved out our pumpkins, Mommy dressed me up as a California raisin and took me to the local daycare harvest festival where I won first place for my costume. By December the weather finally started getting cold. Sophia and her mommy and daddy had moved away. Christmas was approaching so Daddy hooked up the quad trailer and mommy strapped me in my quad seat and stuck a pair of antlers on my head and we set out with Aunti Kris and Uncle Ken to find a Christmas tree to Cut. I thought this was going to be a fairly easy task since we live on the edge of the El Dorado National Forrest that just happens to have a Christmas tree farm not to far from our house. I’ve come to realize that picking out a Christmas tree is harder than it looks. The trick is getting everyone to agree on one tree! They’re either too small, too big, not enough branches, too many branches, too many branches on one side and not enough branches on the other. There were more reasons than even Goldie Locks could think of and all I wanted to do was get these silly antlers off my head and go home before someone mistook me for something they’d put in their freezer! We finally found the one that was just right. Now the amazing thing about Christmas trees is they have a tendency to grow another three feet from the time you cut them down to the time you try and stand them up in your house and ours was no exception. But, buy the time we got it decked out in all its trimmings, it looked like something you would see in a Norman Rockwell picture with the magical lighting touch of a Thomas Kinkade. As Mommy sat back to admire it, I could hear her wheels turning and I started getting nervous again. I knew she was thinking. Then, out came the tripod and the camera, and after wrapping a big box to look like a present and stuffing me in it, she started clicking away. She said, next to Jesus, I am the best Christmas present anyone could hope for! As the snow started falling, once again, we took to the slopes. Brooke and her mommy and daddy, my friend David from next door and his daddy, and Aunti Kris and Uncle Ken along with Mommy and Daddy and I, made the trek across the road to grandma and grandpa’s sloping driveway. I out grew my toddler sled and since I was the fourth toddler inline to inherit it, it was pretty wore out and just wanted to spin me into a doughnut, so Mommy put me on a sled with her. It was so fun because I got to go fast and I would be grinning all the way down. Sometimes we would crash and roll out in the snow. I ate snow and laughed all day long. It was great! Then all the big people got bored with that run so everyone headed next door to Brooke’s house to a really steep hill. Mommy said it was too steep for me to go down so I stayed at the top with Daddy bundled up in my sled while everyone else FLEW down the hill. Mommy said once was enough for her and as they all gathered at the bottom discussing the need to have a tow lift and anticipating the hike back up the hill, they heard Daddy yell “Oh no, Joey!” and saw my sled flying down the hill with a bundle in it. You should have seen the looks on their faces as mommy leaped in front of my out of control sled to stop it. I didn’t know an approaching fifty-year-old woman could move so fast! Daddy and I thought it was pretty funny as we watched from the top of the hill. I still bundled up safe and warm. As for mommy? Well, she just didn’t see the humor in it! We continued to get more snow through out January and Mommy took me for a few sled rides over to visit grandma and grandpa. But for the most part it was too cold for outside. We mostly stayed by the woodstove and I would play in my jumping seat or my new activity chair. I also got a stander that mommy puts me in to help me learn to bare weight on my legs. I actually like this and tolerate it for long periods at a time. I finally got my new glasses. I had no idea of the world around me until I put them on. I tolerate them quite well now but it wasn’t always that way. At first I didn’t like them because the ear pieces would get tangled in my curls when Mommy tried to put them on. If I had them on while laying down playing, they would slide all over my head and when Mommy tried to take them off, they would be even more tangled. Eventually they would make me sick. Now Mommy only puts them on when I’m sitting up playing or watching a movie. Everyone says I look very sophisticated and quite debonair in them. In February I got invited to my first birthday party for my new friend Lilly. She also has trisomy 13 and lives about an hour from me. Lilly is one month older than me and boy is she a “looker!” Mommy says if she believed in arranged marriages, Lilly would be the one for me! She likes to run her fingers through my hair and hum to me and I like it when she does it. My seizure activity started increasing in February. I went from having Myclonic jerks to stiffening and shaking my arms for about 10 seconds once or twice a day. I had to have a 24-hour EEG done so when Sissy was home visiting, Mommy and her took me down to the hospital to get me hooked up. The technician was set up and ready to start marking my head with a black marking pen but when he saw me, thought better of it, and tossed the black one aside and went for the florescent blue. After marking about 30 blue spots on my head, he glued an assortment of colored wires to the spots with something that smelled like model airplane glue. By the time he was done my head looked like an elevator control panel and if that wasn’t bad enough, he took some gauze and wrapped my head like a mummy and left a 3 foot pony tail of wires coming off the top of my head and then said “your good to go”. ‘Good to go?’ I thought. ‘You mean I actually have to go out in public like this?’ I just wanted to get in the truck and go home so nobody would see me. Just as I was strapped in my car seat and home was on the horizon, Sissy and Mommy started talking about how hungry they were. I’m thinking, ‘No, Mommy no, don’t stop’. But sure enough, they pulled into a Fresh Choice and wheeled me in in my stroller. If this had been Halloween, I would of been pretty proud of this getup, but February? What were they thinking! The next day we returned to the hospital to disconnect the wires on my head. This was not an easy task as the glue worked real well at sticking to the fibers of my hair. I winced a few times and let out a whimper as the technician rubbed stinky stuff on my hair to try and dissolve the glue so he could pull the wires off, all the while assuring my mommy that the remainder of the glue would just dissolve and wash out. Well, when the glue mixed with the florescent blue marker, it turned the glue an iridescent blue that stuck to the tips of my tight curls…… for two weeks! It was a hair style any teenager would have been proud of. Aside from my good nature, I do have one teensy, weensy, rebellious streak. I don’t like my teeth brushed, and I don’t like my nose suctioned. At this, I purse my lips and fling my head back and forth real fast hoping Mommy won’t catch up to which ever orifice she is trying to tend to. Mommy even tried to disguise the “booger sucker”, which comes in the form of a big green bulb syringe that you get from the hospital, by drawing a smiley face on it, complete with a bow tie at the neck of the bulb. So when she deflated the bulb for a good suction, the smiley face turned into a silly face, hoping to get my attention. Her little plan might of worked, had the bulb not blown a seem. She tried wrapping the “booger sucker” in white medical tape, which made the smiley face bulb look like I did a month ago minus the wires. When tape didn’t work, to my relief, she tossed it in the garbage. I thought I was safe. But then she set out to find a new one. She went to every department, drug and medical supply store she could think of but couldn’t find the big green bulb syringe. She tried the little blue ones, the white ones, but none of them quite suctioned liked the smiley-faced green one. She tried all my doctors’ offices to no avail. The only place you could get one is at the hospital. Now I’m thinking, ‘It must not be God‘s will, (or mine) for Mommy to have one of these “booger suckers” and she ought to just give it up!’ But she didn’t. In fact she called everyone she knew who was about to have a baby and asked if they could get her a new big green syringe, hoping that at least one person, in the throws of labor, might remember the “booger sucker”. Then this strange phenomenon happened, “booger suckers” came abounding from every direction! Every one of those friends Mommy called remembered the big green syringe. One friend was so kind, she got Mommy two! We had “booger suckers” lurking in every corner of the house! As soon as Mommy hears the slightest irregularity in the airflow of my nasal passages, she heads for the booger sucker! Mommy thinks this is the greatest thing since sliced bread. All I know is I have the cleanest nose in town! Well there is no place like home. Every night while Mommy and Daddy sit and talk before bed, I curl up in my mommy’s arms and she rocks me to sleep. I never demand that she does this but I sure enjoy every minute of it when she does. Then Daddy kisses me good night and Mommy puts me in my bed. She lays her hands on me and prays for me. She even prays for my other mommy and daddy. Then she kisses me good night. Daddy always comes in first thing in the morning and says goodbye before he goes to work. Here it is, my second birthday. Among the group of aunts, uncles, great aunts and uncles, grand parents and siblings, were my friends Brook, David and my special friend Lilly. God has been so good to me this past year and has blessed me with good health and friends and family that love me very much. My needs are met, I’m well cared for and I’m happy. What more “quality of life” could you ask for! JOEY
“HAPPY BIRTHDAY TO ME, TODAY I TURNED THREE” “I’M A LONG TERM SURVIVOR, OF TRISOMY THIRTEEN”
Here it is, another new year of adventures. And once again, I kicked off my year with bronchitis. But you can’t keep this cowboy down. I just had to pull on my boots and buckle my spurs and get tough because I had a rodeo to go to in April. Yep, that’s right, I joined the rodeo circuit and had my first ‘Special Kids Rodeo’ at the Auburn Stampede. I drew up on big wooden bronc and an over sized stuffed bull and after making, my 8 second ride, I did my barrel run. That’s kind of a ‘girlie’ sport, but somebody had to do it. The only problem was, my wheelchair kept bottoming out in the freshly plowed footing of the arena so we didn’t make a very good time. But the cowgirls and rodeo queens loved me and we had a great day complete with a free meal, special t -shirt and bandanna. And of course, Mom and Dad liked it ‘cause they got free tickets to the Pro Rodeo.
In May, I got referred to Shriner’s Hospital to have the curvature in my spine checked and x-rays of my hips because they are not very supple. After looking at the x-rays, the doctor told Mom that I had osteonecrosis, which means the blood supply to my right hip had diminished and the hip bone would eventually die which would then cause me a lot of pain. Mom asked the doctor if the blood supply could ever replenish its self to the bone and get better. The doctor said it would be very rare in a ‘normal’ child but in a child like me, it just would not happen and there is nothing you can do for it in a child except pain management. They would recheck it in six months. Then the doctor had my feet and legs casted for some braces that will keep my feet and ankles aliened right with my legs which will be better for weight bearing. After that appointment, Mom had me put on the prayer chain at church for healing in my right hip.
The beginning of the summer I got sick with a virus but once again I had to “cowboy up” cause Mom signed me up for a rodeo in Reno. This was a big one. Ten days of professional rodeo with three days of special kids rodeo. Mom didn’t realize when she signed me up it was fathers day but it was a good way to spend the day with my dad, and Mom too. So on the road we went pulling the trailer so we could camp there. When we got to the rodeo and checked in, they gave us a BIG bag of all kinds of goodies, a bag lunch, t-shirt and of course those free tickets to the professional rodeo. We first did our grand entry where we all (thirty of us) paraded in with the American flag. The professional cowboys and cowgirls sang the national anthem to us. I had a very proud mommy standing in the bleachers as daddy and I stood proudly at attention with our hats off to our American flag. Then it was time to ride. Once again I was helped down on my bull and bronc by the professionals who know how to do it right. I had a good ride and a lot of fun. I did mutton busting (adapted) for the first time too, and that was interesting but the best part of these rodeos are the rodeo queens. There were queens there from all over the country and they would not put me down, they actually fought over me but of course, I didn’t mind, I was lovin’ every minute of it! After wards, I got glamor pictures of them with their autographs and sweet messages to me that are now covering my bedroom walls. When we were all done with our rides, we each received a nice Justin silver buckle from the ‘Reno Special Kids Rodeo’. It was a great event and I can’t wait to do it again next year.
This summer Mom and Dad decided it was time to get me my own pony. Some friends would come over from church and help give me therapy by putting me in different positions on my pony’s back while they walked me around. They call this Hippo therapy but I never understood why since you use a horse and not a hippo! Mom and Dad want to get a special saddle made for me so I can also ride in the upright position too.
When it got too hot this summer, Dad was really wanting a pool and you know how much I love water. So, I’m thinking this is a really good idea. Now, most people go down to your local Wal-Mart and get one of those big blue pools……..not my Dad. He’s calling around to feed stores for prices. I wasn’t quit sure we were on the same page. I’m thinking, ‘floating on a raft, basking in the sun, my sun glasses on, my straw cup with an ice cold drink in one hand’ You know, a nice relaxing way to spend a hot summer day. Then came the really good news. Somebody named ‘Craig List’ had one for a really good price. So, Mom and I went to pick it up. Not only did ‘Craig List’ turn out to be a girl, but the pool was not quite what I had in mind. It looked like one of those big galvanized water troughs you would find in the ‘cow patty’ pasture! Doesn’t Craig know pools are supposed to be blue and come from Wal-Mart? Well, we loaded it up and drove home. We looked like a couple of Oakies with it hanging off the back of the truck and I was praying Mom’s trucker knots were tight enough it wouldn’t go rolling off the side of the canyon. You should of seen the glee in Dad’s eye when we pulled into the driveway. He couldn’t wait to set it up. Of course, there wasn’t much to setting it up. Just a flat spot and some water. Maybe if ‘Craig List’ had sold us one of those blue pools from Wal-Mart it would of come with directions that told daddy to put it in the sun. But instead, he put it in the shade where it was too cold for Mom and me to get in it! Dad called it refreshing, says it’s his ‘red neck’ swimming pool. And when he plopped down in it he looked like someone you would see on an ice tea commercial. ‘Hmmm…..I think I’ll wait for the Wal-Mart pool.’
When it got too cold to go out side and ride, Dad made me a platform swing and hung it from a beam in our living room where I can get some vestibular stimulation through the winter months. Ten minutes on a platform swing for me is like winding up a wind up toy and letting it go. When we stop, I just want to keep moving all over the place! When Mom can’t work with me on the platform swing, she puts me in my toddler swing that Dad hung from another beam where she can walk by and give me a push and then do what ever she needs to do.
With the help of Missouri, some good doctors and a lot of prayer and hard work on Mom’s part. I was able to get synagis injections to prevent a respiratory virus that can be fatal to medically fragile kids. I don’t like getting the 2-3 shots every month in my legs that lack much meat and muscle but Mom felt better with me having it along with various flew shots and the N1H1 Vaccine, knowing I was well protected against the winter months of illnesses that put so many kids like me in the hospital.
In November we made a trip down to southern California. While we were there, we visited a family that has a ..trisomy 13 girl named Natalia, she is nine years old and walking and doing great.
After we got home, it was time for my appointment at Shriners to have my hip re x-rayed. Now Mom had been praying for me every night as she always does, laying her hands on my hip and asking God to bring back the blood supply and heal me. One night while praying, Mom really felt God had healed me. She could no longer asked God to heal me, but could only thank Him for the healing he had done. When the doctor came in with the results, Mom already new. The Blood supply was coming back and the hip was improving. However, The doctor that told her that would never happen, didn’t think it was a big deal that it had! But Mom knew were the credit lies and continues to praise God for the healing.
This year, I learned to drink from a straw which Mom really likes because now she can pack those little juice boxes when we go some where. I also will grab the spoon in my food bowl if Mom forgets and leaves it in front of me. The only problem is, once I get it in my hands, I don’t know what to do with it except fling food all over.
I have adjusted pretty well to wearing my glasses and Mom says I actually reach out a little farther for my toys and focus on my movies when I have them on.
I only gained about 1½ lbs. Over this past year but added a few inches to my height. What I didn’t gain in pounds, I made up for in nieces and nephews. This year I gained two new nephews and one niece born New Years day, which makes me an uncle X’s 4.
In January, I had my first grand mall seizure while we were standing in line at the pharmacy picking up antibiotic. Mom was ready to tell someone to call 911 when I took a breath and my color started to come back. I ended up having a urinary track infection. The doctor thinks between that and the fever, that’s why I had the seizure. But I did have another one about a month later and Dad did call the fire dept. My doctor increased my medication and gave my mom a medication to give me when I’m having a big seizure like that.
Well, I made it through the year without Mom dressing me up in some silly costume, or so I thought…..Then I got an invitation to my special friend Lilly’s (trisomy 13) birthday party. She was having a disco dance for her 3rd birthday. I didn’t know what disco meant, but I couldn’t wait to dance with my girl. Mom and I went shopping for the special occasion. I should of known something was up when we went shopping at the thrift stores. My first clue was when she pulled a pair of girls white bell bottoms off the shelf and held them up to me and said, “perfect!” Then we went to the woman’s department and found a shiny, colorful paisley shirt and some silver, shimmery material. By the gleam in her eye I could tell she was really getting into this. Next, we went to the shoe department were she picked out a nice pair of black, boys, dress shoes and said, “these will do!” ‘Something normal’ I thought. But apparently, they weren’t quite good enough for my mom because when we got home, she took out a can of metallic gold spray paint and painted them! Then she went to work cutting, pinning and sewing until the woman’s paisley shirt was now a toddler size three and the silvery material became a vest. I was starting to get the idea of the meaning of disco and could understand why my dad always said he tried to forget those years.
Just before my third birthday this year, I started putting up a fight when Mom tried to give me a drink from a straw. She couldn’t figure out why I suddenly didn’t like it. She likened it to trying to ‘bit’ a horse with a bad tooth and decided it was time to make me a dentist appointment. But not without looking in my mouth first. After finding a creative way to get me to open my mouth, she found what used to be a yellow spot on my front tooth, was now decay.
My time with ‘Pride and Joy’ (early intervention) is coming to an end. Now that I’m turning three, I will be going to school were I will be getting all my therapy and have some social interaction. This will be a big adjustment for my mom since she has never had to load one of her children on a school bus before because she home schooled all my siblings. The closes School is an hour away, another big adjustment. This is were I need to tell mommy to ‘cowboy-up’ it’s going to be O.K!
My sissy and favorite (only) brother in law came out from Maryland with my new niece for my birthday. We had lots of friends and family here to celebrate with a pot luck and bon fire. For my birthday I got a pool from Wal-Mart so this summer you will find me basking in the summer sun on my raft!
part 4 March 6, 2011
“HAPPY BIRTHDAY ONCE MORE, TODAY I TURNED FOUR” “IN MY LITTLE WORLD I’M WHO MOMMY ADORES”
My fourth year started off with me going to school. I was not able to ride the bus at first because of my increased seizure activity. Mommy thought it was best to have an aide ride with me in case I had a seizure. So, while Mommy and the school were working on the logistics of it all, she would make the hour drive over the rural canyon road every day to take me to and from school. And sure enough, there were times I would have a seizure. With no cell service and very little traffic, Mommy’s first responder, fire department training would kick into gear, and she would pull over to resuscitate me because I’d stopped breathing and turn blue. One day after having a seizure on the way to school and another one after Mommy picked me up, she was on the phone to the doctor when I had a third one. He wanted me to go right away to get a blood test so we did. The nurse poked around in several places trying to get a draw but finally gave up. She then called in someone else. That person, after several tries, finally got a good stick. But while she was taking my blood I had my 4th seizure for the day and this time I stopped breathing and was blue. Once again, Mom started resuscitating me while the nurse at the clinic was on her way to call 911. I came back around and the medics were not needed. This was becomming the new “norm” and Mommy was getting weary. Mommy and Daddy would be afraid to go to sleep at night and would be up all night checking on me. Then one day while at home I had a seizure and stopped breathing. Mommy and all her “lip locking” techniques could not get me breathing again. Daddy was not home so she called 911 and then called my dad. The ambulance came, now breathing and dusky, the medics loaded me up with my mom and took me to a hospital in Sacramento that was better at handling kids like me. The Emergancy room was full and they didn’t have a room to put me in and so left me in the walkway awaiting a bed upstairs. However, all that changed when again, I started seizing. All at once I was surounded by doctors and nurses. A room opened up and I was wheeled in. Mommy was impressed at how quickly they were able to get an IV in this normally hard to stick kid’s seizing foot! After I was stable, they wheeled me upstairs and I was admitted for the second time this year for seizures. This time they connected me to a 48 hr EEG, only to tell my mommy in the end, that I had “abnormal” brain waives! “WOW”, I thought, “Mommy should get a job here, she’s known that all along!”. Mommy discussed the possibilities of a vagus nerve stimulator (VNS) with the doctor, which is a battery device that is implanted in the left side of the chest with wires that run up the neck and attatch to the vagus nerve. In some people, it will keep them from having seizures. The doctor then changed my seizure medication and sent me home. The new medication, vimpat, nipped the seizure activity and thus became Mommy’s new best friend. The school district finally approved an aide, who just happened to be a friend from church, Mickey. Three mornings a week, Mickey and the bus show up at my door to pick me up. Since it’s just me on the bus, the bus driver lets my “Wolfy” pup come in and say goodbye to me. Then it’s off to school I go were I’m greeted by my wonderful teacher, my class mates and a really cute teacher’s aid who just adores me. Then the work starts. I tried to sleep through school to avoid this endeavor, but they kept waking me up to make me do things I didn’t want to do. I tried to play “grumpy” and got pretty darn good at it too. But my teacher is real smart and wouldn’t let me get away with it, which is probably why she’s the teacher! I finally adjusted well to my school days and actually learned to like it. I was having more and more “good day” and “very happy” reports written in my communication folder. When I came home I was “wound up”, full of smiles and very vocal. School agreed with me well. So well infact, that I got a “Golden Star” student award for my class at the end of the year. I’m not quite sure which area of excellence I was awarded for: My outstanding citizenship, scholastic achievement, athletic ability, performing arts or community service. I’m thinking the performing arts since I can be pretty dramatic sometimes. But non the less, Mom and Dad were still proud of me and said I probably got it on account I’m so darn cute! And THAT got me a free pass to the county fair. At first Mom would wait impatiantly for the bus to return, counting the minutes, watching for the bus to come rolling down our chip sealed road. I think she got over it quickly ’cause as the school year came to a close, she enrolled me in summer school. Two days after we broke for summer vacation in July, we drove to Sioux Falls, South Dakota for the annual S.O.F.T (Suport Organization For Trisomy)conference. After over heating several times, shreading a tire on the trailer and dodging tornato weather, we finally made it to “Jellystone Park” Sioux Falls where we met up and camped with my big sissy, her husband and my niece, Audrey. We had a great time at the conference where we saw old friends and met new trisomy families. I was made to feel like a king when they rolled out the carpet and and Miss South Dakota crowned each one of us as we walked, rolled or strolled down the isle. One of the benefits of the conference are the medical clinics. Mom took me to the Orthopedic clinic and the doctor suggested I get hand splints and a vest that helps support my trunk. When we got home mom pursude that and I found myself in an orthopedics office being wrapped in plaster like a mummy. Mom picked bright yellow for the finished colors and when it came time to walk out of the office with my new bright yellow splints and body vest, I looked like a bumble bee. But I was a happy one at that, ’cause I could sit up in mommy’s arms and she didn’t have to support me. Soon it was time to start back to school. My metal “cowboy” lunch box in hand. After seeing how much I improved with 3 days, Mommy decided to have me go 5. It was great. I dressed in a different costume each day of “spirit week”. And for those of you that know my mommy, this was right up her alley! Pajama day one day, 70′s day the next. My disco outfit came in handy! We made crafts with my pictures and hand prints. One of the crafts my mommy and daddy really liked was the sponge painted picture I brought home last fall of two big deer and some fall leaves. Mommy said that maybe it was hieroglyphics for “I want to go hunting this fall”. Daddy said, maybe I’m following in the footsteps of Daniel the prophet, and that it’s going to be a “two deer” season. Well, as you can see, I’m no prophet. Daddy only got one deer this year. But he was a big one! For Holloween Mommy dressed me up as an indian. She made me a vest out of a real deer hide. She said I was from the “Black-Foot” tribe, and then “plucked” the feather duster for real feathers to make my head dress. She painted up my face and decorated my muck-luks and vest with beads and feathers and fringe.Then she took me into town to collect candy that I couldn’t eat!…..”hummmmm” My seizure activity was still under control with the new medication in September. But the doctor still thought it was a good idea to go through with the VNS. Three weeks after the surgery, I started developing signs of a STAPH infection. I was put on a strong antibiotic for three months. Then, six weeks after the surgery, The wires that connect the VNS device to tha vagus nerve in my neck were starting to poke through my skin. Fearing the wire would puncture the skin and externally contaminate me of STAPH, the doctor quickly took me back into surgery and fixed it. Do to the nice weather and not much talk of illness, Mommy kept me in school ’till Christmas break. I stayed healthy during the holidays but I was becoming lazy. So by the end of January Mom decided to send me back to school. I was there a few days when I a came down with a fever. Mommy pulled me out for the next couple days. When I was better we tried again but after a couple days I came down with a fever again. Thinking I might have an ear infection or UTI, Mom called my regular doctor for an appointment that afternoon. I was already going to my GI doctor that morning so this doctor decided to go ahead and check my ears and do a urine test and save me another doctor visit that day. She also wanted me to have a CT scan to check my appendix. Well, ears were fine, appendix were fine, and the urine was not but do to the large lymph nodes that were seen on the CT scan, they feared lymphoma and told my mom to take me to the hospital. This became my 3rd “Club-Med” vacation. With fevers ranging between 103.5 and 104.5, it turned out I had a raging UTI, not lymphoma. “WHEW!”. They also discovered from test that I have a dislocated hip and double uriters. After being there four days, I started developeing a cough, snotty nose and throwing up. I then tested positive for RSV. Which explained the continued high fevers. I was there long enough for Daddy to bring down the trailer and Mom and Dad took turns camping out in my room with me. One week after I strolled into the hospital, I strolled out and boy was I happy camper! But with all the antibiotics I’d been on lately and a “down” immune system, two weeks after being home I came down with another fever and awful cough and snotty nose. Mom now has this fancy thing she calls a suction machine. I liken it to a shop vac for noses. When she starts that baby up you should here it purr. It even makes my dresser shake! No longer do I thrust my head back and forth when she comes at my nose with the hose, but I give her full body action in complete rebellion! Gone are the days of the green bulb syringe. This year my friend Lillian had a “barn yard bash” for her birthday. She had every kind of large and small farm animal there you could think of, and boy, did I feel right at home! I bottle fed a baby pig and road miniture cow. I had a great time. But the best part? was when Lillian leaned over and kissed me goodbye! So this brings my 4th year to a close at 24.5 lbs and 381/2 to 391/2 inches, depending on which leg your measuring. Mom says I’m still a “peanut” but is not complaining too loud since she has to carry me up and down the stairs. Well off to more adventures…. Joey
“Happy Birthday I’m 5, and I’m still alive, I’ve been a blessing to my family, Since the day I arrived”
I’m back to school and doing well and I’m happy. But on April 5th, I woke up in the wee hours of the morning with a distended belly. I remember that day well because it would have been my brother, Tucker’s, 10th birthday. At first Mommy thought she over filled me with the feed pump so she stopped it. Realizing that she hadn’t, she thought in time my belly would go down. By 4am, my belly was progressing in the wrong direction. While on “eternal” hold to the doctor, Daddy woke up and saw my big belly and made a command decision to call an ambulance. I’m glad he did ’cause I was feeling awful. It was “De-ja-vu” for Mommy and Daddy. One year ago on Tucker’s birthday I had a big seizure and was taken to the hospital by ambulance. And since I like making this special day for my parents a memorable one, I decided to do it again. The ambulance couldn’t take me to to the big hospital in Sacramento that better handles kids like me, so they took me to a smaller, closer one. This hospital didn’t quite know what to do with me. And as we waited for another ambulance to take me to the bigger hospital, Mommy anxiously watched my belly grow bigger and bigger, fearing I might pop! After our rushed trip to Sacramento I was admitted in the PICU where doctors looked over my x-rays. I soon became quite popular as the illuminated, black and white picture of my belly was on display for all to see. I heard one doctor say, “That is the BIGGEST colon I’ve EVER seeeeeen!” Now, I was quite proud of that diagnosis and apparently the envy of some doctor because I was quickly wheeled into surgery, knocked out, and when I came to, this doctor had taken 2/3 of my colon from me.And while at it, he grabbed my appendix too. They tried to pass it off by giving me an illiostomy hoping I wouldn’t noticed what the difference, but that didn’t work so well. So 10 days later I went back into surgery and the doctor reversed it while fixing another blockage caused from an adhesion from the first surgery. By the time I left the hospital 5 1/2 weeks later, I had several scars from the PICC lines, a scar from the illiostomy, and a scar that looked like a zipper running down my abdomen. Add these to the scars from previous surgeries and I thought I was look’n pretty macho! That is until Mom drew a caterpillar head at the top of my “zipper”…………with a smiley face……so unmacho! When Summer school was out, Dad rented a car and we headed east to the SOFT conference. (Support Organization for Trisomy). Our first stop was in Reno to visit my new baby niece. Yes, I am an uncle again for the 6th time to the cutest little big, brown eyed princess named Taylor Kristine. Then off to Chicago, which is known as the “windy city”. But this year it was the “hottest city”. Little did we know, we were headed into a record breaking heat wave with temperature soaring to 108* and with 85% humidity, the heat index was 128*! It was miserable! At night we would wake up to tornado warning sirens blaring. My big Sissy would sleep through it all. I guess she’s used to it living in Maryland. But my California Daddy was watching for funnel clouds searching for shelter. We took a drive to the Field Museum where Daddy said we were going to see the “Man-eater” lions of Tsavo. This was one of those times I was glad I’m still a boy. Then Daddy assured me they had long been stuffed. “Whew!” I was sweat’n it and it had nothing to do with the heat! We didn’t waste time hanging around Chicago once the Conference was over. Daddy had enough of the heat, tornado warnings and toll roads. He said the toll roads were highway robbery even though I never actually saw a masked man on the side of the road. We headed south to visit long time family friends in southern Illinois and then over to St. Louis were I was born. We had lunch with Cindy the attorney who helped with my adoption and Sue, the woman from Family Christian Services who also helped. Then that night we had dinner at my foster families house where I spent the second month of my life. The next morning, the judge who finalized my adoption made a hole in his docket to see us. With visiting out of the way, we headed west for home and cooler weather. Dad decided to give a little history lesson along the way. He said, “You know, the pioneers didn’t really head west in droves to look for gold. They just wanted to get out of this dang heat!”…..Made sense to me. Driving across Kansas we kept seeing signs for “Prairie Dog Town”, “home of the largest prairie dog!”. Now to me, a prairie dog is just a glorified ground squirrel that is more varmint than dog. But, being the hunters my parents are they couldn’t resist a peak. So, we pulled in for a “look see”. We saw hundreds of prairie dogs overtaking the grounds with their mounds. But what really interested me was the 6 legged steer and his 5 legged cow cousin. This place was home to many miss fit animals. On our way out we passed by a huge box and I heard what sounded like sizzling bacon in a hot pan. When we looked inside, there were dozens of rattlesnake of all different types and sizes. We then headed for the Colorado Rockies to spend a few days with my Dad’s cousins at their condo. The dry cool air was a real welcome! Then it was home. In September, Mom and Dad entered me in the Georgetown Founders Day parade. The theme was logging days so Mommy and Daddy worked for two days transforming my adapted bicycle and radio flyer wagon into a bright red log truck. Instead of being “Peter Built” it was “Dad Built”. Complete with a “Road Kill” license plate and a raccoon hanging off the bumper. In the fall, my doctor started making some seizure med adjustments, which made me very, very sleepy. More adjustments, and I started having more seizures. Christmas day Mom could tell something just wasn’t right with me but she couldn’t quite pin point it. While she was waiting for the doctor to return her call, the “south bound” end of me let loose, and I had the worst case of diarrhea ever. When the doctor called back mom gave her the latest, embarrassing details that led to this event. Her advise was get to the hospital as soon as you can. By the time we got to the E.R, I was now throwing up. Green water was coming out both ends of me and my seizures were out of control! I was admitted. Now remembering the “colon conspiracy”, I was a little guarded with my entrails. Thank goodness no surgeries were needed but I did have a bad case of Cdiff and pancreatitus from one of my medications. And since they had to take me off that medication and try new ones, I was on a video monitored EEG for over a week. It took a couple weeks but they finally found some medications that seemed to keep my seizures under control. So, I was moved out of the PICU and on to the pediatric floor. Mom and Dad felt comfortable enough to leave me for one night to go on a preplanned duck hunt with our church, which was actually closer to the hospital than home. Ruthanne, my respite caregiver came to the hospital to spend the night with me. Which was a good thing because during the night, when nobody would have been in my room, I had a bad seizure and stopped breathing. Not being in the PICU, I wasn’t hooked up to any monitors. So nobody would have known. I was taken back to the PICU and Mom and Dad’s duck hunt was cut short. After 3 1/2 weeks, I was well enough to come home. Three weeks later I ended up back in the PICU for another week and a half, with a bad case of the flu. Compared to my others, I consider this a short stay. This year my friend Lilian and I shared our birthdays together again. She always has the greatest parties. And she is always a “hit” at mine. Well this about sums up this past year. I am praying for a healthier next year!