NaBloPoMo has been accomplished! One post for every day this month, in spite of all the stress and chaos and having the first three days be out of state!
Today, I was thinking nothing more would be happening with trying to get stuff figured out for Little Man's various procedures, with it being Friday and the first day Dr. Tall and Thin was back in town. That is what I get for thinking.
We will start small. One of the things I was very frustrated with was not knowing how home health care was going to go. WHO would be the nurses coming out? Who would be delivering and in charge of all the various supplies for his PICC line? Who would be in charge of delivering his ridiculously expensive formula and g-tube supplies? I had no idea! The last time we did the PICC line, we had a different insurance provider, so that changes everything. His formula is not only very expensive, like feeding the kid liquid gold, at 7$ for an eight oz juice box, but it is made by only ONE place, so supply is sometimes an issue.
I found out today two different companies will be handling it. One for the PICC line and one for the G tube and formula. Yay! Now I know. I called the g tube people, known as enteral feeding, (now you have a new word!) to find out how much lead time they needed for his formula, and I was told at least 3 days. So as soon as we have a surgery date, I will tell the enteral peeps and they will handle it from there. Speaking of formula and all that, in case any of you care, (and it is cool if you don't) I can't wait to get him back on his liquid gold. (*I tried to link to the formula but it wouldnt work. If you care, then put SHS E) 28 in the search box for google, I give up!)
Ever since we have had him on this other formula, we have been dealing with vomiting and some blood from his GI tract off and on. When we get the g-tube his insurance will pay for the liquid gold again and he will grow and gain weight! Yay. Speaking of which, he quit the sausage kick he was on two weeks ago. He has lost 7 lbs in the last month. Now we are going to finally do it, I can't wait to feed my boy what he really needs for honestly, the first time in since he was a small baby.
I got a call from the GI doc's office, Dr. Very Nice and she wanted Dr. Tall and Thin's name, because, "something has just got to get done and maybe if she calls him, they can get this figured out." Wow. You could have knocked me over with a feather. THEN, at 4:30 on a FRIDAY no less peeps, (only some of you will understand the import of this. Drs do NOT like to stay late on Friday and usually by early afternoon on Fri, everything pretty much grinds to a halt until Monday. To say I was surprised is an understatement) Dr. Tall and Thin's office called me and told me that Dr. Tall and Thin was going to tackle Infectious Disease on Monday and get them pinned to date. Wow and wow again. All on a Friday afternoon. His VNS surgery has been rescheduled to Dec 11th. His PICC line and g-tube will take place some time before that. We are back with a date! A very busy day indeed.
By the way, a HUGE thank you to my wonderful posse who stuck with me through NaBloPoMo and cheered me on by leaving comments. I luv ya!
And now your reward. The Pea was helping Bam ma clean last night and figured out her very own way of doing things. What can I say? Not only did it work, it was cute as heck. Enjoy.
Friday, November 30, 2007
NaBloPoMo has been accomplished! One post for every day this month, in spite of all the stress and chaos and having the first three days be out of state!
Thursday, November 29, 2007
Most of my regular readers know about our Bare Eyed Cockatoo (BE Too) Meeko.
Recently, Bald Man and I let her wings grow out and she is now fully flighted.
There is a lot of discussion among parrot owners about the pros and cons of clipping. Some of the reason to clip include not losing your bird and to help with an aggressive attitude. Bald Man and I have been working on recall training, but Meeko hasn't been particularly cooperative. And then, recently, Meeko has become very aggressive. She has been buzzing my head and sometimes landing on my shoulder only to bite my ear or head. After the last week, last night I decided I was at the end of it and I just can't cope with the extra stress of Meeko flying. Oh I forgot to mention that she also likes to fly into the kitchen and clear off the counter (meaning throwing everything on the counter onto the floor, including full boxes of cereal and chewing the nipples off of my June Bug's bottles and pacifiers). Bald Man and had a long talk and decided it was in our family unit's best interest to clip Meeko again. We waited a day too long to have this talk.
Today while the UPS man was at the door, Meeko saw her chance and flew out the barely opened door. Dang bird flew away! And kept flying away from me. I lost sight of her pretty quick at first, but I kept calling her in the nicest voice possible. "Meeko, Meeko! Come here baby!" Inside I am thinking, when I get you home, we are going to have cockatoo soup for dinner! She actually squawked right back at me and began to fly in circles around our apartments, right above my head, but she wouldn't come and land on my shoulder. Brat. After a while, she got tired and decided to land in a tree. A tree, blessedly, very near someone's third story balcony. After watching for a bit and seeing she probably wasn't going to fly away real quick, I took the risk and ran up to that apartment. Thank goodness they were home, and didn't think I was too crazy and let me in. I ran out onto the balcony, leaned over and there was my crazy burdy, hanging upside down! Goof ball bird. She was very happy to see me, and happy to step up for me. I wrapped her in my coat and shoved her in her cage. She is NOT coming back out until she goes to get clipped. And if we decide we want her to be flighted again, we will work on the recall training BEFORE she can fly. Brat bird. Geez, she almost gave me heart attack!
And I am not sure what it says about me, but even as I was so very scared about her flying away and getting frozen in our freezing Utah temps, I noticed how incredibly beautiful she looked sailing along in the blue sky, her crest all up and her squawks sounding out joyfully, at least from my vantage point. I don't know, it is a crying shame she isn't in Australia living her natural life. Although even I as think that, they are varmits there and the local farmers shoot them to keep them from damaging their crops. I don't know, is a longer life a good trade for losing your freedom if you are a bird? A moot point for Meeko, this isn't Australia, it is Utah, we have hawks, eagles and the winter temps that want to eat her, so in her cage and clipped wings it is.
Wednesday, November 28, 2007
Simply floored! Little Man did super well today. He drank 12 oz of that horrible contrast and didn't need the ng tube after all. If you had asked me to bet, I would not have bet in that direction. But there, he did it. We threatened, cajoled and a kid in the waiting room helped me bribe Little Man into drinking it. (The kid in the waiting room told Little Man he couldn't have a turn with the video game until he drank it all. It worked!) What should have taken less than half an hour ended up taking more than four. Seems as though my boy just doesn't like to do things the regular way. It was a rather cool test, because it was a live action flourscopy. So as he drank the contrast liquid, you could watch it on the monitor going down. There was a certain amount of holding him down for the first look. The radiologist said that Little Man had an interesting anatomy of his small intestine, which might or might not be a problem, depending on how his large intestine looked. So lucky us! He had to drink more contrast and we got to get a new picture, (mostly xrays, but two more flourscopes) every half hour until 7 pm tonight. After the first one, he didn't need to be held down again and I was really proud of him for that. One thing I noticed today is his level of understanding has increased a great deal since the last time I had to anything like this with him. I was able to tell him, if couldn't hold himself the way they wanted him to, then we would need to hold him down. He said, "no, I can do it" and then he did. I was so impressed. That is a big jump for him. Up until now, I really couldn't get him to understand a concept like that, or to tell him, you need to drink this, or they will put a tube down your nose and have him really understand it. It is a big leap for him with his abstract thinking and I really had given up on him ever getting there. But he did. Wow. Not that he was angelic, he was still Little Man. He scratched me and the tech, called everyone names, spit, hit and was in general a pain in the patootie. But a much smaller pain than he has been in the past. I am so hoping this isn't just a one time, caught him on a good day thing, but instead, a real step forward in maturing. This test is done and once we get his PICC line squared away, he can have his two surgeries. We all survived and I didn't feel like I should start drinking or just take one of his ativan so I wouldn't care anymore. Instead, I felt pretty good and not too stressed when I got home, which is a HUGE difference from the usual. I will take my blessings where I can find them and today was a BIG one!
Tuesday, November 27, 2007
I have a pet peeve, oh yes I do. Let me tell you a couple of stories.
Did you know that Marie Callendar's the pie place has a 5.99 pie sale 3 times a year? Feb, June and Oct. Well they do. The only time I buy pies there, because I am a cheapskate. I was standing there in line, to buy their Chocolate Satin pie, (which if you have never had, well then your life isn't worth living) and they took my order and then moved on to the lady behind me. She said, "Oh, I was in here three days ago and bought two pies, but you gave me the wrong one, so I want another one". I was left standing there, thinking, "wait, you took those two pies home, ate them and now expect, three days later for them to just give you free pies." Unbelievable!
Yesterday, Rudy's mother came upstairs to inform me that they were finally getting one of their shipments, (they are miltary and moving from Taiwan I think) and there would be a HUGE truck, blocking most of the parking lot in front of our apartment from 8 until 5 this evening, and well, we better move our cars, unless we want to get blocked in for the day. What??? Unbelievable. Now I know where Rudy gets his poor social skills! I called the rental office and they told her in no uncertain terms she could not block the parking lot for that many hours. Some people! I can not stand rude, self centered people. Now you know a pet peeve of mine. Feel free to share any of yours, so I can feel less like I am an intolerant human being.
Monday, November 26, 2007
to I don't know when, actually.
Like a carefully crafted house of cards, that tumbles down at a slight breeze, today's medical phone relay resulted in everything being thrown into disarray. I have NO idea what is going to happen over the next week or so. Oh wait, I do know one thing. Little Man goes to the Large City Sick Kids R Us on Wednesday to get an Upper GI done. I just love it. It involves Little Man ingesting a barium drink. Ha ha! Do you hear me laughing??? We can't even get the kid to eat enough food to stop his malnutrition, and they think he will DRINK it??? They do have a back door though. According to a website: "Occasionally, if your child will not drink this barium liquid, a tube will have to be inserted into your childs stomach through the mouth or nose in order to introduce the barium into his/her digestive tract. This will not hurt, however it is uncomfortable, and is used only as a last resort for uncooperative children unable or unwilling to drink the barium" Please make note of the word uncooperative. There ya go.
What was SUPPOSED to happen: Little Man was supposed to have his G-tube done on Thursday or Friday, with the PICC line done either the day before or the same day. And then the VNS replacement on Dec 4th. BUT. Ahem. Dr. Tall and Thin's office has not been able to get Infectious Disease to respond with a timeline for the PICC line. Great. They are saying we might even have to put off his surgery for the generator for his VNS, which is a very bad thing, because waiting too long, as we all know, might result in the dang thing failing. Dr. Tall and Thin is gone out of the office this week. It is possible his GI doc will take the ID bull by the horns and get them to respond or perhaps she will decide to take on the whole PICC line thing herself. Sooooo.... either we will or we won't, by the 4th. It will all get done in Dec sometime, but you do realize I prefer sooner rather than later with Christmas coming. Arrrgghhh! I could just scream. The waiting, the worry, the phone calls. I have been too busy today to even think about the mountains, I am sorry. But never fear, they will still be there when I get a chance to think or even breathe again.
Sunday, November 25, 2007
Someone is completely potty trained, day and night with nary an accident. 2 years 3 months. That includes flying to Mississippi with her daddy for Thanksgiving. Those of you with small children probably do NOT want to know how very easy she was. But of course, she is my grand daughter, so that probably explains it.
Saturday, November 24, 2007
We saw this movie:
The story pushed my ability to go along with the storyline more than once. I would be all squirmy, thinking, oh gosh, I am not sure I can swallow this, and then the music would come along and I would melt again, and the happy would come back. Mostly the movie would reminded me so much of our Princess who "loves music more than food". Her music is her soul and she lives to share it and allow others to feel the music within. I found this site, Music Hutch, to see if it would allow me to share one of her songs with you.
Chag this song is for you!
Princess sings I turn to You
My daughter's talent always floors me. I can never hear her and not be amazed at her ability to sing and her passion for music.
Friday, November 23, 2007
You know how sometimes you want to just one little thing done? And when you go to do that one little, bitty, thing, you suddenly find that you must accomplish five or ten other tasks FIRST, before you can get to just the single, ONE thing you wanted to do?? Welcome to my world.
Jack our sweet little doggy has been doing this lately:
(this isn't Jack, I didn't think to video his antics)
As an experienced dog owner, I realized Jacky boy needed his glands cleaned out. Easy to fix, just make an appointment with the doggy groomer, less than a mile or so from our apartment. I did this last week. When I called, I found I needed Jack's rabies vaccination information. Can you see where the cascade is beginning? Well, since Princess is the one who adopted him from the pound, she is the one with the info. I call her and find out that Jack has NOT been vaccinated. AND, she lost the coupon to do it. I call and cancel Jack's groomer's appointment. I can see this is going to cascade out of control. I call the pound and find out that yes, I have another coupon, but I have to come and pick it up. Then I have to make an appointment with the vet to get it done. I do. I find out I had to watch Pea for an hour that day, so I pick up Tank, then pick up Pea, then go to the apartment, pick up Jack, take Jack and Pea to the vets, and get his shot. Yay! FYI, the vet said Jacky is healthy and about 3 years old. The next day I take Jack to the groomers, only to find out he needed to be vaccinated for 48 hours before his grooming appointment. So we make ANOTHER appointment for Friday. Mind you, all I wanted was to not have to squeeze my dog's butt myself and this has taken more days and hours than I wish to count up.
FINALLY! It is Friday and Jack has gone to the groomers. He was really scared, (I think he remembers going to the pound and thought he was being abandoned again, poor lil doggy.) He is now groomed and squeezed. Sheesh. He is happily sleeping on the couch, smelling faintly of cinnamon.
And you have my tale of woe, of how I fell victim to the cascade effect.
Thursday, November 22, 2007
I made the pies last night, but there is still much to do. I am coughing up a lung, (aren't you glad you aren't coming here for dinner?) and I should be cooking, but instead I am blogging. I know, I know, I have all my priorities straight!
Things I am thankful for, (not in order of importance, just when I thought of them)
my grand babies!
More than enough food
Large Children's hospitals less than an hours drive
My marriage of 27 years
My pets, (waving at Jack, Fluffy, Peter and Meeko)
My friendships, old and new
the internet and cable
last and certainly NOT least
My bloggy darlings
I could go on and on, but I shan't, cause it would be boring.
Ten years ago, a social worker knocked on our door and handed us a baby boy.
Last year's Gotcha post I loved him instantly, but it took months before he felt like mine. Miracles look different than we expect sometimes and I didn't realize mine would look like no sleep and spending lots of time in the hospital with a sick kid. Our Little Man is loved beyond reason by every member of our family and I can not see the love flow out from his brothers and sisters without being grateful to the God that brought our son home. The ride has not been what I expected, but I have learned too much to be sorry for it at all. You were the answer to my prayers, my tears and the balm of Gilead for my heartbreak.
Happy Gotcha Day Little Man!
Wednesday, November 21, 2007
Alright, alright, I admit it, I did it for me, but I am SHARING it with you. I have this thing about technology. Utterly, completely fascinated by it. I was at Wally world today and I saw this on a shelf:
Check this out!
It comes in a SELF heating container! Can you imagine???
Come along with me while I explore this new gadget.
Turn the container upside down:
Pull off the pop top, (actually bottom)
Push the plastic button:
The green liquid will drain in about ten seconds, then you can turn it right side up.
There is a pink spot on the container:
When the pink spot turns white, it is hot:
While it is hot, it isn't too hot and it was pretty salty, but not too bad. Here is Princess enjoying the first sip.
It says Tomato Vegetable and it was! There was a green bean in there. Princess got it.
Tuesday, November 20, 2007
I can see the tornado coming and I can't get out of the way. Now the storm might just sideswipe us and we might only lose a few shingles. On the other hand, it might hit us full on and cause a huge disaster.
I was up by 5 this morning. The sad part about that is it was better than being asleep because I was having nightmares. I am fighting off a cold, so I am tired and sniffly and scared and tired. Did I mention I am tired?
Today was a phone relay day. Many phone calls flying back and forth. Gastro doc's office, Neurosurgeons office, and now I am supposed to call Infectious Disease. The g-tube surgery is a go, either when they place the PICC line or when they replace the generator in his VNS on Dec 4th. The nurse I spoke with sounded like they would probably do it with the PICC line placement. The ONLY problem with that is Neurosurgery can not get a date out of Infectious disease for the PICC line. Who knows. I am not worried about the surgeries themselves, Little Man has always tolerated them quite well, so that isn't the problem.
What comes afterward is what is giving me the nightmares. Last night, I dreamed I had to take my boy to the hospital because I thought he might have an infection, (go figure) and first, the windows I had to talk into were too tall for me, so I was standing on my tiptoes and everytime anyone called our names, when I got to the window the person would be gone. Then, we finally got to see the doctor and he informed me that even though Little Man's temp was 149 centigrade, (hey it was a dream and it made sense there!) he thought he was fine and sent us home.
Little Man's bouts of cellulitis have been life threatening, rapidly progressive, and darn right scary. Did you know that cellulitis is a common problem with g-tubes? Well if you didn't, now you do and now you know why I was having nightmares last night.
Monday, November 19, 2007
Can you believe it? It was a record breaking and unbelievable 71 degrees here in Utah!
The mountains were lovely, as always, with a moon hanging over them.
I thought Bald Man and Jackie Boy were looking so cute together. Here they are:
Bald Man has started calling Jack the best dog we have, that we never wanted.
Some very cute Pea-isms: "I wick me arm!" (I lick my arm) She has started saying me instead of my and it is sooo cute. "Put me scocks on, bam-ma" (put me socks on).
"There's a kiger in the car!" Screams and covers her eyes. (kiger=tiger)
Me:Who's a stinker? Are you a stinker Pea?
Pea:No! Mommy's a stinker!
Goodness I love that little girl. She is going with the baby daddy to the south to spend Thanksgiving with his family. I will miss my little stinker so much.
Sunday, November 18, 2007
The Princess was over and showed me some pretty spectacular bruises on her legs. I was shocked and asked how in heaven's name did you get those? She replied, with a twinkle in her eye, "oh from pole dancing". My wide eyes gave her all the reaction she was seeking and she wasn't in too big of a hurry to inform me that a friend of hers and herself were doing it as a form of exercise. I guess it is getting pretty popular?
Just call me old fashioned, but I will leave the pole dancing for the young'uns.
Saturday, November 17, 2007
While I was in Berkeley I thought I would have the full experience, so I decided to get one of these:
I was quite disappointed to find out the only person surprised by my henna tattoo was my hubby. So much for trying to shock anyone. I was very sad when it faded, and I would get another one, except after the Pea saw my drawing, she thought drawing all over yourself with a pen was just fine, I mean, Grand ma did it! So no more tattoos for me.
Friday, November 16, 2007
Maybe you wise and wonderful mommies out there can help me with this. We have some new neighbors and there are two little boys that Little Man has started to socialize with. One of the boys is 9 and the other 6. They play video games together, at our apartment. Not that I would mind if Little Man went over there, but there hasn't been an invitation in that direction. Which is fine too.
Anyways, here is my little dilemma. The older boy, Rudy, let's call him, is um, well, rude. Rude and loud and he calls both Little Man and his brother some marginal names. He says things like "what the!" and "you suck". Which as I mentioned are marginal in my book. He is manipulative and I guess I really don't like him at all. But Little Man LOVES him. Wants to always play with him. If it were left up to me, I would never, ever have him over, I think he is brat. But my boy, my precious boy, my boy who has so little by the way of joy in his life, delights in his company. And I am stuck. I try to do some guidance by way of saying things like, "no shouting", "please don't call the other boys names" and "I think you could...instead", but still the kid really is a monster. So what would you do? What do you think I should do? Talk to his mom? I could, we have chatted quite a bit, try to keep guiding the kid into treating my boy better? What?
Edited to add: I am less worried Little Man will pick up the way Rudy acts and more concerned about Little Man being manipulated and used for his awesome toys. Rudy will threaten to leave unless Little Man concedes to what this child wants, including things like allowing Rudy to play a one player game that leaves the other two out of it. The younger brother seems quite acclimated to his brother extortion and threats to tattle or leave if he doesn't get his way and so the little brother just lets him have his way. I think Rudy is pretty marginal in his treatment of my boy, but once more, I have been guiding and putting up with it because Little Man loves the time they spend at our house. I am trying to allow Little Man to work things out for himself and not spending all my time hovering over the kids. But geez, it is hard, because he is so vulnerable.
And Chag? I thought about you when I said "mommies", and almost said parents instead, but I reminded myself you hadn't commented in a long time and I thought perhaps you weren't reading, so I went ahead. I will be more careful in the future! My apologies and thanks for the advice.
P.S. I called Dr. Tall and Thin's office, but the nurse said she hasn't been able to pin him and get him to answer the question for Little Man's PICC line insertion. So we continue to wait. And worry. Next week.
Thursday, November 15, 2007
Sue totally inspired me for this post.
Bald Man and I met at a college in California, at a religion class. We met in Jan at the beginning of a new semester. I had a volunteer job there, as an official greeter, so I was very friendly to him. He looked old to me, I assumed he was thirty and was married with a couple of kids. He thought I was coming on to him. :::::::::rolling eyes:::::: We would tease each other and that was about it. By April, I thought he was pretty cool, but he just wasn't responding to my flirting/teasing and I was ready to give up by May. At the same time, I was submitting my papers to BYU. I was offered a scholarship and a half, (room, board, tuition and books), so I was leaving for Utah at the end of summer. He finally asked me out on a date the end of May. Later I would find out the only reason he did, was because I was leaving for BYU. He wasn't interested in getting married, and I seemed safe because I was leaving. I wasn't interested in getting married either! For heaven's sakes, I had just turned 19! The first date, we didn't kiss but we did hold hands. But the next date, (the next day) we did kiss and there were definitely sparks. The third day? Another date. The fourth day? Another date. We were inseparable. After just a couple of weeks, people were commenting on our closeness and asking us when we were getting married! We were quite amused, because as far as we were both concerned, I was leaving for BYU in a few weeks. After being asked the same question, over and over, by the middle of June, we began to tell people we were indeed getting married! They would ask when, and we would answer, June 31st! People would say congratulations and we would laugh. About half the people would come back and say, "hey, there are only 30 days in June!" and we would all laugh some more. We did think we were very funny.
One day, Bald Man took me to his house, (he was living with his parents) and told me he had something to show me, in his room. Whoowwwee! I remember the day vividly, because I had never been in his room and I was totally smitten with the boy. We went upstairs and he showed me his calendar. The June on his calendar had a June 31st! It was a mistake, or was it? We were engaged in July, married in August. From our first date the end of May to our wedding date the end of August, was one day shy of three months. While I wouldn't be happy if any my kids did it, it was right for us. 27 years later, still in love and still married.
Wednesday, November 14, 2007
I sure hope you are not tired of my very, very cute and talented grand daughters, cause I have another one for you today.
Guess who is sitting up so very well now?
Ah yes, our sweet June Bug! Here she is from all angles.
And the best for last:
She is so pretty and so smiley and sweet. Oldest Son and Girlfriend are very spoiled with her wonderful disposition. Sleeping through the night already??!! Amazing.
And she makes the cutest noise when she sees me. She doesn't make the noise for anyone else, just me. So not only is she strong and sweet, she is obviously brilliant too.
Tuesday, November 13, 2007
The Pea is over today and was willing to do a guest post by way of pictures. Translation: The Pea got ahold of my camera, and being the Grandma I am not good at the no thing, so I just kind of supervised. She actually did a really decent job.
Go Pea! Her first official blog post.
Monday, November 12, 2007
I breathed a sigh of relief when we had a storm yesterday that washed away all the nasty smog and brought a sprinkle of new snow. It was so chilly this morning I could see my breath. Maybe winter will arrive after all.
And yes, I am fully aware of how beautiful it is here and how lucky I am to get to see it every day.
The animals at my house are nuts.
I brought out a bag of wool, much to Fluffy's delight.
There was some serious kneading and sucking going on. Crazy cat.