Monday, May 31, 2004Well, I'm back! I haven't even viewed my blog in about 2 weeks. Bad Naynay. Savannah will be getting a new life soon! I can't wait. I am so glad the time has come. I am so at ease with the whole thing. I have always been totally against liver transplant. I always said, "not until we absolutely have to!" I was terrified. Now, I am calm. It's really funny. My mom & Mom-in-law wanted a family meeting for me to reassure them. It's pretty crazy but I have always been the one to support them when it comes to Vanna. I was dreading the meeting all day but it ended up being ok. Hubby even sat in and heard a lot of what to expect. After they all left he told me how he felt. He said & I quote, "If anything happens to either one of you, it will be the end of me." And I believe him. He would run but I think (hope) after a year or 2 he would come back. he did the same thing when the twins died. I am hoping CH will call tomorrow with the appointments for the first set of tests. All I know is sometime in June. Well, tomorrow is June so lets get on with it!! I really, honestly can't express the joy & contentment in my heart. I keep telling my mom, hubby, & mom-in-law to pray for God to give them the peace & grace because He will! I am proof. They say God answers prayers in 3 ways. Yes, No & Wait. I have been waiting for almost 4 years and He has finally said Yes!! Oh, I'm so excited!
Thursday, May 20, 2004What a life. You get a cold & end up being hospitalized. Can't hardly walk, falling from ammonia induced seizures, dazed, confused, in & out of alertness, & when it's all over you will feel like you've been on a drunk and have a 2-3 day hangover.
This is my Savannah today. She has been battling a cold for a week Thursday. Her body can tolerate 2-3 days before her liver gets tired of working overtime and then the poison starts creeping into her body at magnificent brain damaging levels, but so slowly only the trained eye can spot it happening before comma hits. How is she going to feel about this when she's 8 or 10 or 15? How do I feel about it now?
This child has been through more in her 3 1/2 years than most adults ever will. She goes through it smiling. She knows all the routines. 3 docs come in one after another but all doing the things: listening with her taking deep breaths, looking in the ears, nose mouth, eyes, feeling and pushing hard to make sure the liver isn't hardening. She will open her mouth, lift her shirt and anything else any of them want to do. She will jerk her tegrederm off like its nothing while 10 year olds scream in objection & pain. She has only ask to go home once and told her daddy to go back to work when he came to visit. She is mammas girl. Our bond is so strong just like with EJ. They have both had a rough life but momma has & always will be there for them both. They know that. I have made sure.
Sometimes I start feeling sorry for myself & for Vanna. I know, I know there are others worse off but everyone has there own set of problems, equally as hard in their eyes. Sometimes I feel like I'm losing my mind. I never dreamed of having to be so educated in this disease. I never dreamed I would be teaching Doctors with medical degrees in the city of Asheville about all aspects of this life controlling disease including how to treat it. My brain goes on over load. I know God gave Savannah to me because he knew I could handle it but man... I know beyond a shadow of a doubt that without His grace there would be know way.
It is midnight so I need to go & supervise the next ammonia draw. I will get to go to sleep around 2am. I will wait for the results and contact the local genetic doc to determine our next step. Good night all
Monday, May 17, 2004Bike Riding
In the pouring rain with no rain gear! It was an adventure. Mom came over and kept the kids so hubby & I could ride yesterday. After double checking the weather channel & seeing only 40% chance of rain we decided it would be safe. I have never wore shorts on the bike because of the risk of getting burnt by the pipes. Well, today I was determined to wear shorts because of the beautiful weather. We rode about 30 miles & stopped for lunch. We ate at a cute little Greek restaurant on the patio with wrought iron tables and chairs & an umbrella to shade us from the sun. Along with the music they were playing it reminded of a scene in one of my all time favorite movies. Raining in Seattle. And then it started raining! Just sprinkles but on a bike that needs tires that is enough to scare you. So we left and managed to dodge the rain for about an hour. We really didn't want our date to end so soon. We traveled up Reynolds Mountain and it was gorgeous. At the top you could see the rain pounding the Blue Ridge Parkway and the thunder was getting closer. No lightning thank goodness. So again we headed out to avoid the rain. I am sorry but people from Florida need to learn to drive our mountains before they move here. We get behind this car that is riding it's brakes all the way down. Very frustrating when trying to get away from something. We finally get down & start heading towards home and run into the rain. It was flooding the roads and hubby could barely see in front of us. It was about a mile before we pulled over & found shelter. This was my first time in the rain and I was soaked. Hubby was worse. Me & my shorts were freezing! It started slacking & we were only about 5 miles from home and decided to take the back road with the least curves seeing as how the back tire has almost no tread. Not even a 1/4 mile and the rain pounds us again. He takes a turn to get us to another back road and towards the lighter sky. We finally get home and the rain was just starting there. Anyway, it was a memorable ride!
Today I will be doing my first "crackle paint" project. My uncle made my mom an outdoor chair with decorative bird houses and she wants me to paint it. The crackle look will give it the weathered look. I am looking forward to it. Painting is like gardening to me. Both are relaxing and can be very good for you.
Wednesday, May 12, 2004THE BEHEADING
I will admit I spent a few minutes trying to find the video online. The whole time I'm searching for it I'm wondering if I will actually watch if I do. I mean really, who wants to watch an actual real life beheading of an innocent American? At first, through hear say, I thought it was a soldier then read the story & realized it was a business man from Pa. This world is sooo messed. But then again that's war. But why video it & release it? I guess some people will get a kick out of watching it, thinking it's TV or something. Others.. won't even entertain the idea of watching it. I keep seeing the video of the man in white shoes falling from the tower. I keep telling myself this is real life. Ever since 9-11 I have for the most part stop watching the news all together. I use to would watch news in the morning & evening everyday. Now it's nothing but a good dose of depression. God said the end times would be perilous times. I know in my heart of hearts it will get even worse than it is now.
Monday, May 10, 2004HAPPY MOTHER'S DAY
This was a wonderful Mother's Day! the first one I've enjoyed in long time. I invited my mom, sis, mother-in-law & great aunt over for dinner. We spent the cool evening on the back porch with a breeze blowing indulging an ice cream cake from Dairy Queen. Yummmm
Saturday my hubby & I tore down a 15 year old metal storage building & hauled it to the land field. That place literally smelled like pig shi_. Anyway, it really opened up our back yard! We will sew grass this evening. Our new building will be here in a week and will be placed on the back side of our yard instead of the middle.
Our Silkies have gone coo-coo & I don't mean for cocoa puffs either. The rooster has decided to attack anyone who gets near his territory, the momma doesn't want to lay her eggs in the nest but rather outside in the middle of their run around area, & the momma to be is setting on 21 eggs. That was last at last count, Saturday.
My iris's are in full bloom. Beautiful purples, burgundy and two-tone yellow & white. My day lilies are about to bloom. The tulips are now spent. The glads are coming along nicely as are my other flowers. I am hoping to put in a pond with a rock garden of sorts before the fall in a corner of our yard where the trampoline use to be (before a huge tree fell & crushed it).
Till next time..
Friday, May 07, 2004Yes, I am back from vacation. We had a wonderful time but I haven't had a chance to blog because I had to catch up on my blog reading! The weather was perfect. Not to hot not to cold. Spent one evening losing track of time sea shell hunting with EJ. Savannah instantly took the ocean, unlike her reaction last year at Daytona, & named the sand her sand box. Woke up to the most picture perfect sunrise I have ever seen and went to sleep with an equally beautiful full moon. We kept our balcony door open the whole time we were there so we could sleep & wake to the sounds of the ocean. Did a little bit of shopping, flew the kite effortlessly, spent a lot of time in the many pools offered, played at the water park & convinced the cleaning lady that the occupants of our room were shooting up drugs.
What you are asking? Did she just say shooting up drugs??? Yes, I did. One day when the cleaning lady came I was caught off guard. Savannah was napping, EJ & Hubby were in the ocean & I was on the balcony reading when I heard someone in the room. She was a very sweet foreign lady who could speak some English. I started helping her with trash & towels and we were chit-chatting. Nice lady. We go into the kitchen where I had Savannah tubes, syringes, med bottle & other pariphinalia air drying on the counter. She looks at this and points, "This here I know nothing about." I realize what she is thinking and get very nervous and scared. I felt like I had been Caught! I look at Vanna sleeping and point to her saying (no more like stuttering), "These are for her." Then I think oh no, she thinks I'm shooting up my child. I've got to fix this! So I try again, "My daughter has a feeding tube and I use all this to feed her." The cleaning lady insists that, "I know nothing of this. It is OK. I know nothing." So I give up and let her think what she wanted. Looking back it was very funny.
Savannahs scales decided not to work at all until our last day there. I wasn't about to let that ruin my vacation so I reasoned it out and went back to the old school way of measuring her protein. I was a bad mommy & didn't call Chapel Hill Monday. I knew she was OK so I didn't want to deal with that while I was trying to get away from it.
EJ found a sea urchin (sp) and carried it around for a while before he realized IT WAS ALIVE! Too funny. Later he found one that wasn't but we forgot in the hotel room.
I started a photo album and have uploaded pictures from our vacation, so take a look! I have other folders made but no pics in them yet.
Sunday, May 02, 2004I woke up at 6 am like a kid on the first day of school. I am really excited. Yesterday we got everything packed & you have to remember that with a special needs child like Savannah, you DO have to pack everything including the kitchen sink! I am getting ready to go into my favorites & delete everything that has to do with blogging. My mom is staying here to take care of the dogs & chicks & even though I love her dearly, I don't want to share my blog with her! EJ just got up & said he didn't get much sleep either. To excited. I am hoping that he & I can get up at low tide (or is it high tide) & go sea shell hunting, just the 2 of us. That would be great! Well, off to make some happy family memories!!!
Saturday, May 01, 2004Going to the beach tomorrow for a few days (hopefully). Leave it to Savannah to start having problems after 3 1/2 years of getting our nerve up to take her more than 2 hours out of our safety net. It has been a rough wee. Savannah sick, mother-in-law & hubby splitting, cousin has baby that has 20-50% survival rate, mom is very depressed.
Will be sooo nice to get away....
"Don't cry because it's over.
Smile because it happened."
-Ted Geisel (Dr. Suess)
Today I Feel...
(not anymore since blogging
came into my life!)
saved by God's grace!
Old Pieces03/01/2004 - 04/01/2004 04/01/2004 - 05/01/2004 05/01/2004 - 06/01/2004 06/01/2004 - 07/01/2004 07/01/2004 - 08/01/2004
Other PiecesSavannah's Journal
In Memory Of My Boys
Read about kids living w/ UCD's
McKayla's tx journal
YaYa Sisterhood in Christ
Future PiecesLiving Donors Online
Ronald McDonald House
Other People's PiecesAhhhhhh, relief
Tribulations of an American GI in South Korea
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