Hi Everyone,

    It's me, Neallie, and I am writing to give you an update on all that has been going on with since I last wrote.  There as been so much going on I don't know where to start. Well, to begin with I am now ONE! That's right I am now one whole year old and let me tell you I like it.  I can do so much more now that I am one than when I was only eleven months! Although being one is great there have been some times that weren't so great like my tongue reduction surgery.  That was not a fun experience. But let me tell you all my good stuff first then I can tell you all about my yucky tongue operation.
    Let me see, I am able to walk without help, and I've even mastered this walking in shoes!  As of right now I don't think I have a problem with my legs or ankles, they seem to be working okay.  Although I do favor my left side when I am going down stairs, I tend to lead with left leg bent and then follow stiff legged with my right.  With Grandma and Mama's help, I will learn to use them both the right way.  Mama has noticed that my right side is still chubbier than my left.  It's not longer or shorter it is just chubbier.  When Mama asked my doctor about this he at first didn't notice a difference until Mama got insistent and then he got a tape measure out and measured my arms and legs and realized that yes, my right side is chubbier than my left.  He then ordered some x-rays of my long bones to see if there was also a length discrepancy.
    The x-rays showed that I was perfectly even on both sides. So for now all that is a problem is that my right is chubbier, although we will keep a watch on this to be sure one side doesn't outgrow the other.  Of course unless you just stare at me for hours on end , like Mama does, and know what to look for, you'll never know that my right is chubbier than my left.
    I'm still mastering this talking thing so for now I can talk to Mama and Daddy using sign language.  I can sign NO, more, drink, eat, please, thank you, and change me.  Although my favorite is to point and grunt and make Mama and Daddy guess at what I want.  I can say a few words like, Mama, Dada, here, bye-bye, night night and in my own way if you listen close I say Grandma, Grandpa, Mammie (for my Aunt Sam), Natie (for my Aunt Natalie).  I am getting to the point now where I can repeat words in my own way for everything you say to me.  You may not understand what I'm saying but I know I'm talking!
    My year wasn't all fun and games though, I had my tongue reduced in August, and let me tell you I didn't like that one bit!  It hurt and was painful, but I survived and am here to tell you about it. I was just a baby when I had my reduction, 10 months, with Dr. Marsh in St. Louis.  At first my parents had thought to have the surgery done here in Dallas, but the surgeon they saw had initially told them that it would be an in and out procedure-NO hospital stay!  He said that as long as I was drinking after surgery I could go home.  At first my Mama and Daddy thought they misunderstood when he said no hospital stay, so they asked his nurse what would they do if my tongue swelled and I couldn't breathe?  We live an hour from Dallas so just driving up wasn't an option if I wasn't breathing, and my parents don't trust our local hospital.  It is the type of hospital that they are more likely to kill than cure!  So after the nurse talked with the doctor he said yes that I might have to stay in the hospital overnight.  So after considering all their options, they decided to go to St. Louis to have the surgery instead of in Dallas, regardless of what the cost.  As they put it, I deserved the best and in their opinion that was Dr. Marsh.  So off we went to St. Louis.
    My surgery was scheduled for 11 in the morning so I wasn't allowed any milk after midnight and only clear liquids until 8 and then after that nothing at all.  My parents had a real fun time trying to keep me occupied so I wouldn't want to eat.  I don't think I've seen them make such fools of themselves in public but it worked, soon my time came to go to surgery and I hadn't fussed too much about not getting anything to eat.  I was put into an ICU room that was going to be mine and it had a tv so I watched some tv and took a little nap while we waited.  All too soon my turn came and we were ushered into a special area that was for those getting ready to go into surgery.  The doctor and the nurse came out to talk to my parents and tell them about what would be going on and how I would look upon my return from surgery.  They were told that I was likely to be quite pale from loss of blood but that the loss wouldn't be so significant as to require a transfusion, but I would look very pale. They were told once again about the procedure and how Dr. marsh was going to take wedges from both sides and the front and then sew it back together, and that it wasn't going to look pretty at all:  it would be all swollen and the stitches and the swelling would make it look horrible but that it was normal and not to worry too much about how it looked.  They said okay and in a few minutes the nurse came back out and took me from my parents and down a corridor and into surgery.  I remember waving bye bye to Mama and Daddy and that's it before coming out of surgery.  When I woke up, I didn't know where I was and my mouth hurt excruciatingly.  My Mama was sent for and she came and held me close and feeling safe then, I laid on her shoulder and just went to sleep letting the medicine work its magic on me.  Mama just stared at me like I had grown a third head, I don't think she was prepared for just how bad I would look after surgery.  My mouth was a mess of black, and the smell of blood was overwhelming, but she swallowed back her tears for she knew that I needed her to be strong and reassure me that I was going to be ok.  So she swallowed her own apprehensions and sang my favorite song to me "You are my sunshine" and just whispered how much she loved me and that I was her sunshine.  Daddy got to see me when I got back to our ICU room and he too wasn't quite prepared for the sight that was before him.  He and Mama just looked at each other with a few tears, and began to sing my favorite song.  I slept most of the first two days in the hospital, only waking when I needed some pain medicine. The social worker came to see my parents and gave them some coupons for meals and when she found out that Mama still nursed,  she told Mama that she would get her meals for free and then she arranged for breast pump so that she could store her milk for when I was feeling better.  She was a really nice lady.
    I didn't even move when I was transferred to the pediatric floor.  I only wanted to be held, I didn't like laying in the crib to sleep, so Mama or Daddy would hold me while I slept and they would see that I had pain medicine and anything else I might need.  As my mouth healed, the smell of blood slowly began to subside and my mouth didn't smell as bad as it had been.  There were times when Mama and Daddy couldn't face me because my mouth smelled so bad.
    By the third day, I was feeling well enough to sit up and play a little ball with my Daddy and bat at the balloon they had bought for me.  Mama tried to give me something to drink but that just still hurt too much so I wouldn't take it.  The doctor and nurses even tried turning the flow down on my IV so that I might get thirsty but I didn't.  It hurt too much to drink so I didn't.  We walked all around the hospital to see all the fish and out to the garden to see all the sights and we swung in the swing.
    Then on the fourth day, Mama and Daddy noticed that there was some blood in my IV line.  They called the nurse and she called the doctor and he told her to watch the resistance and that if it kept escalating, I might have blown the vein in which the IV was in and they would have to try again.  What the doctor didn't know was that I am a very hard person to get an IV into.  While in ICU the critical care nurse had to put a new one in because my nurse just wasn't able to, I am so chubby that it is very hard to find my veins.  They even considered putting it in my head before they found one by my ankle that would work instead.  Was I ever glad because I really don't think I would have liked having a needle stuck into my head.  Well needless to say, I did blow the vein and the IV had to come out.  They were going to call the transport team to come and try when I decided that I might want to take a little drink by myself.  Since I was taking a little, they decided to hold off on the IV for just a day to see how I did.
    Wow without that IV I was able to walk and we were no longer hindered by a pole and could really go all over then.  I really liked the garden.  I liked to push the world around on the sheet of water and swing in the swing with my parents.  I even tried to catch the Koi goldfish they have in the ponds and I might have succeeded if Daddy hadn't grabbed me just as I was about to get into the water!  Later that night Mama asked the nurses for some pudding and a popsicle to give to me to eat.  I liked the pudding and I ate it all by myself, one fistful at a time.  We all had a good laugh when the nurse asked how much I ate and Daddy told her, "5 fistfuls".  It didn't matter how I ate it just as long as I ate.
    While taking a bath, Mama was able to get me to drink 2 ounces of water by putting it in a regular cup and then she would pretend to take a drink and then I would take a drink.  I was on a roll now about eating and drinking.  I liked anything that was cold and soft and sweet and I really like the soft spoon that I could use to feed myself since it didn't hurt my tongue at all.
    By the next morning, I was ready to leave the hospital.  I had eaten and drunk enough to get released.  YIPPEE was Mama ever glad, she was going stir crazy being in the hospital.  We were given a prescription for pain and released.  We stayed about 20 minutes away in Illinois.  We went to see all the St. Louis sites:  the zoo, the children's aquarium, the arch, Union Station.  It was fun.  I only had one little mishap that sent us back to the hospital.  One night we went to the Olive Garden for supper and while I was eating a bread stick, a piece of the bread got stuck on my tongue and I inadvertently pulled some of my stitches out while trying to remove the bread.  At my scream, Mama and Daddy stopped talking, looked at what I had done and were off in motion.  Daddy left the money on the table while Mama grabbed me and off we sped back to the hospital.  It must have scared them more than it hurt me for by the time Daddy had driven to the hospital I was asleep against Mama.  When we got into the ER, we were taken right away to be processed and to have them examine what I had done.  By the amount of blood on Mama, you would have thought I had severed something rather than just pull out 2 stitches. All the doctor did was cut the piece of skin that was hanging from the stitches and trim those that I had pulled. The skin was dead anyway so it would have fallen off he told my parents.  He said the worst that would happen is that I would possibly have a dent in my tongue where the stitches didn't quite come together.  So no major problem, they just had to watch me a little more closely to see that I didn't pull any of the others out too.  After a few more days in St. Louis, we made our way back home to Texas.
    All in all the procedure wasn't too bad and I'm glad my parents went ahead with it.  I had my first birthday in October and am just growing like a weed. Those who don't know I had the surgery think that Mama had my hair cut!  They notice something is different they just can't put their finger on exactly what is different!  I think I look just wonderful now and I'm sure you'll agree that I do look like any other child. I no longer have to hear comments about how I'm sticking my tongue out or how cute it is.  I now have a tongue that is just as unique as I am and I wouldn't have it any other way.

November 18 2000
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