Thursday, July 31, 2008

Happy Birthday Darling Boy!

Tuesday, July 29, 2008

Updates All Around

But don't forget about the contest for the previous Mountain Monday post. It will be done on Friday! Prizes COULD include my incomparable Almond Roca, or something else delicious. Or a book. Actually I am planning on tailoring my prizes to who wins! So please, please, don't make me feel like a loser, give the contest a shot.
Now that my shameless begging request has been voiced we will move on to all the things to celebrate today!
First!
It is Pygmy Child's 27th birthday!!! Can you believe it??? Happy Birthday darling girl, the world was so blessed the day you were born. I hope your day is wonderful.
Second!
Little Man's labs yesterday came back perfectly normal in every way! Yippeee!!!
Third!
Princess is in Salt Lake City as I type, auditioning for American Idol! Wish her luck.
It is a good day, isn't it??

Monday, July 28, 2008

Mountain Monday and a Contest!!

I don't have very many pictures tonight. It has been a busy day here and I couldn't get out until almost 9 our time, so I only got a couple that are worth showing.


















But in spite of the evening blurriness, I think you can see the surging white heat of summer, browning the mountain sides. Hot, it is HOT here.

First up, Little Man update. He is doing better today. His gums look fine, today, perfect. Weird huh? We survived our trip to the city by the great, stinky, fly infested, sea monkey inhabited lake. Little Man was good as gold during his blood draw. Strange kid. Sometimes it is just hell and other times he is better than any regular ole kid. I called his doctor this morning, we have an appt with him in a little over a week, so we will keep it and discuss what is going on then.

And now, on to the contest. I am unsure of the prize(s) but it will be something!

c
How Well Do You Know Jo?




This following picture is a picture of what I pulled out from under my bed the other day. Your mission, should you choose to do it, is 1. Identify the objects. 2. Tell me the significance of the object. (This is the part where you prove how well you have been listening.)






You have until Friday, whenever I get around to it, to leave a comment with the above mentioned 1 and 2. Good luck!

Saturday, July 26, 2008

I Have Got To Admit (Updated)

things are usually far from boring around here. Remember that post I wrote about Little Man's medicine and the concern about bone marrow suppression? (If not, click on the link, I will wait for you, ::::::foot tapping:::::)
We got a call from Dr. Ruby last night. Little Man's white blood cell count is quite low. How low? I don't know, I forgot to ask, (I was busy trying to process the information) Not like incredibly low, but low and what is more, I guess a pretty big drop from the previous week. I guess the size of the drop was concerning the doctor more than the actual number. Don't ask me what it was, she didn't tell me and I was too busy trying to think to ask *. Dr. Ruby said, let's keep an eye on it, go in the beginning of next week for another blood draw and we will talk about it with his ped and maybe Hematology. She did say, if anything happens,(fever, infection, since his white count is low, his ability to fight off stuff is weaker than normal) take him in sooner rather than later. Guess who has red, inflamed gums this morning? Uh yeah. He doesn't have a fever and we have decided to keep an eye on it for a while and see how the day progresses. Plus we have respite and after months and months of not having any, I am loathe to give it up for a trip to the ER for a kid whose only symptom is red, inflamed gums. (I can see the ER docs laughing me out of the room! If it were a weekday, I would take him to his ped, but it isn't, so the flow chart gets more complicated) I had noticed a couple of days ago when I was brushing his teeth that he had a line of red above his teeth. If he had a fever, or if it was obviously infected, we would be going in now, but I think we can just keep an eye on it for now and see how things pan out. And as I mentioned above, things are rarely boring around here.
How do you like the new digs? I thought I needed a change up around here. I might change it up again, we will see...

******Update*******
Gum Watch: Not looking any worse as far as I can tell. Still red and inflamed, a little swollen. Now I am really glad I didn't take him in. I am guessing he will be fine til Monday, we have to go in for another blood draw anyway and I will see if I can leave his doc a message on Monday too.


*Actually, I was trying not to panic, we are just now getting this boy's mood, behavior and sleep, stablized and changing up his medication is likely to end up in messing up one or all three of those things, and arrrghhhhh, I can't think about that, cause it makes me want to drive my van into the Great, stinky, fly infested, sea monkey inhabited, lake!

Thursday, July 24, 2008

Seeing Through Her Eyes

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The Pea got bit by a mosquito recently. On the back of her arm. She has been going on and on and on about in a style worthy of Little Man's perseverations. She shows me many times a day where the mosquito bit her, (also on her leg) and then proceeds to tell me, that the MOSQUITO BIT HER!!! Complete with all the exclamation marks.
This morning, after she had reviewed her mosquito bites for about the millionth time for me, I got to thinking. Why was she so obsessed with this subject. Then, I thought to myself, "does she even know what a mosquito is?" So I called her in, with her mommy watching, so I could ask her. "Pea, how big is a mosquito?"
"It is tall grand ma, really big!" and she pointed to her mom. I said, "as big as your mom?" She nodded her head enthusiastically. Ah ha!

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Wouldn't you talk and talk about something twice as big as you that snuck into your room in the night and bit you? Well I would too!

Monday, July 21, 2008

The Promised MM Post

Here ya go! It was nice today, it rained a bit this morning so it cleared out the smog that has been blurring the mountains the last week or so. AND, by the way, I didn't say it stunk where I live, and there aren't any brine flies by our house. BUT, not too many miles away is the Great Salt Lake and let me tell you, depending on the time of the year, there can be a great stench and the brine flies are so numerous, they are unbelievable. The flies can get so thick, they are like a living, moving carpet. One great big EWWW! Brine flies and stink. We just live NEAR the large body of water that provides the smell and all the sea monkeys you can buy. Time for the pics! Photobucket Photobucket Photobucket Photobucket The Princess and I took the little kids to the bouncies near our home. A great time was had by all. Photobucket Photobucket

Hey Cousin, let me give you a hand! Photobucket

Check out the combined piggy tail and tongue action! Photobucket

I love this pic, because Little Man is laughing so hard with delight! Photobucket

We haven't taken the kids to do bounces in a few months. Both the Pea and Little Man are capable of doing much more physically this time than last time. The Pea, cause she is a normal sort of kid, growing and developing. Little Man on the other hand, my guess is he has improved his muscle mass with the intro of the feeding tube and the calories he needs to develop. He had a great time and played til he was so tired. I love seeing him so active and it makes me aware of what a blessing calories are. Yay!

Doesn't June Bug look great in yellow? Photobucket Photobucket

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Isn't she darling? She is the cutest little walker you have ever seen!
And that wraps up this week's pictures and commentary. Hope your week is starting out well too!

Yes, Yes, Mountain Monday Will Happen

But it will happen later. I need to drive to the Large City near the lake of stink and flies to pick up a prescription for Little Man that must be filled, like today. Sigh. Bald Man forgot, but it is okay, he is patient with my forgetfulness too. I will snap some pics when I leave, or come back. You do realize I take fresh pics the DAY I post them don't you? I think once, I posted them from a different day, but it was because we were in a different place in the state, so the mountains looked different. Toodles, see ya later!

Saturday, July 19, 2008

Drama King

Little Man woke up today complaining his head hurt. That is a new one. I gave him some advil for it and because he didn't have any other symptoms, ignored it. He did complain of a tummy ache, but I blew that off because we are trying to raise his feeding rate. Right now he is on 72 mls an hour. That works out to 2.4 oz spread over an hour, which isn't much. We have been slowly bumping it up 1ml at a time since he was about at 65 because it was obvious he couldn't tolerate the 5mls an hour more we had been doing. 1 ml is .03 oz, a very small amount, and what is more, it is spread over an hour. Now this kid doesn't know we are increasing his rate, so there is no way for him to fake the tummy ache and the uncomfortable feeling of being too full. The part I don't get is how mere drops an hour can make a difference! I guess it is like filling a glass. Even if you filled it one drop at a time, no matter how long you took to fill it, at some point it will be one drop too many and the glass will overflow.
Little Man had respite, so Bald Man and I fled for our first respite time in many months! We saw Mama Mia, we both just loved it. But after Little Man got dropped off and lost his mind, I was snuggling him and noticed he was awfully warm. Took his temp and he was at 101.8. Yikes. I gave him more advil and was watching TV with him. He looks up and me and says, "mommy, don't forget to put flowers on my grave." I was rather startled and said, "what?". Little Man responded with, "I am going to die and go live in heaven with Jesus." Melodramatic much? Silly boy.

Wednesday, July 16, 2008

Mid Week Update and A Meme

Let's see! Updates all around. Little Man is doing so much better. There is still intermittent foulness, but it is spaced with good behavior so it is much more tolerable. Everything is easier when I get some smiles during the day. I got to go to IKEA yesterday. I didn't find what I was looking for, Basket Charming, but I did get to wander around, eat swedish meatballs and that is good stuff maynard!
I have a busy, busy day tomorrow, so I shall leave you some entertainment while I am gone. First I have a meeting with the medicaid waiver people. (Just in case you were wondering, every state has a medicaid waiver program, aimed at people who have disabilities. This particular program is the one that pays for Little Man's summer program and his theraputic afterschool program. And HOPEFULLY at some point, some respite again! Without them, I would have lost my mind. We meet once a year so as you can imagine, this meeting is ULTRA important, albeit, a tad boring) Then I have to scoot on down to Salt Lake City for a training with some legislators that I was invited to attend as a lobbyist. I am quite flattered that I was invited, it is a really small, select group. I am just praying I don't say or do something stupid! And about an hour after that, I have class I am taking on cultural literacy. So as I said, very busy tomorrow!
In the meantime, I was tagged for a cute meme by Eliza's Mom,where you interview your kids about how they perceive you and what you do. I interviewed the Pea, I might try Little Man, but we will see.
What was grandma like as a child? The Pea: You were drawing on your cousins high chair. (She just did that and got in trouble for it.)

How old is grandma? The Pea: She shrugs.

How tall is grandma? The Pea: She is taller

What is grandma’s favorite thing to do? The Pea: Like to play games

What does grandma do when you’re not around? The Pea: You drive

If grandma becomes famous, what will it be for? I didn’t ask her this one.

What is grandma really good at? The Pea:You do good when you drive and then you left.
(I have no idea why she said that)

What is grandma not very good at? The Pea: You were naughty in the van. (I wasn't but I do drive a van. Hmmm)

What is grandma’s job? The Pea: I tired. (meaning she doesn't want to answer)

What is grandma’s favorite food? eggs (she then trotted off to the kitchen, grabbed the eggs out of the fridge and demanded her mommy cook them for her. She didn't eat them)
What makes you proud of grandma? The Pea: I have to go to bed (avoiding the question again!

If mom were a cartoon character, who would she be? I skipped this one too. Although I suppose she answered it in her own way, because at the time I was Grandma dinosaur, and she was Pea dino and we were going to bed in hat!

What do you and grandma do together? Play games!(Which I find amusing, because we don't play any kind of structured game, although we do play together a lot)

How are you and grandma the same? This was the end of the questions, because she just ignored me after this one!


How are you and mom different?
How do you know mom loves you?

We were quite entertained by her silliness. If you wish to play along, consider yourself officially tagged!
And for my final bit of silliness, here ya go! Doggy torture!


The Pea wouldn't get her jammies on, so we told her we were going to put them on Jack. Kind of backfired on poor Jack when the Pea said, put them on Jack!
Toodles dears! Play nicely til I get back to the puter.

Monday, July 14, 2008

The Mountains In July

Did I actually survive last week? I am not quite sure. It was really hellish on many levels. Little Man's psychiatrist has raised his depak0te dose. While depak0te is mainly a seizure medication, and certainly Little Man has plenty of those! It is also used for mood regulation in the mood disordered. We really have to watch this with our boy, he has had his bone marrow suppressed when we got into some higher dosages. So along with the increase, we are doing weekly, sigh, blood draws. All the way into the Large City children's hospital. Sigh. But I think by the weekend, the raised dosage seems to have done him some good. Sleeping better and besides that, the foulness is receding and we really had a good weekend with him. Much less screaming and violence, and Little Man seemed to be doing better too! (hee hee)*

And for your viewing pleasure


The mountains are just looking soooo incredibly beautiful, I couldn't just choose a couple to share, so I made a slide show to share with you instead. But stupid photobucket won't let me imbed it so you are going to have to click on the link if you wish to see the slide show.

Mountains in July Slide show



AND, because Mountain Monday is my chance to showcase my pics from previous days, here are a few more.
The Princess and I took Little Man and the Pea to a nearby water park type thingy.
Look at my boy's chubs! I love them. Those rolls are safety, they are health, they are insurance against starvation. If you have watched your child literally starve, those rolls are everything. I love them!
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Look at his smile!
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These ones I like because the water looks so cool.

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More playing
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Handsome cutie!
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Come on, ya gotta love the tongue action!


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Guess who is really walking now?
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On the 4th, I bought the younger kids red, white and blue outfits, meaning to take cute pics. Yeah, those didn't turn out so well. Here is one.
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I got a reasonably cute one, but I will have to photoshop June Bug into it.
Mostly they looked like this:


I tried. What can I say?

The Pea and June Bug enjoying some summer fun together.




I am just so endlessly grateful last week is over. Everyone is feeling better, my hub, myself and my boy. We are all breathing deeper and I, for one, am so very grateful for many things. Good medical attention for our son, good friends and bloggy support, a strong marriage, a loving hubby, my family who has supported us through this, Little Man's services. Somehow, coming through last week, all these things have taken on a precious glow for me and I am holding them a bit closer and with so much gratitude. Thank you, for all you have done.















*Boring medical stuff... And just for information's sake, cause I know some of my bloggy friend's kid's might also be on it. There is a therapeutic blood level you need, usually between 50-100.His baseline blood level was 72 And that was with a divided dose of 375 morning and 375 at night. We are giving him an extra 125 every night right now. So we can raise it a bit, but not too, too much. When we had him at 1000 mgs a day, it was wonderful. He slept so well and his behavior was so great. Until his bone marrow decided to stop producing important things, like platelets and other stuff. His blood level wasn't even too high, but obviously too high for his body.

Thursday, July 10, 2008

Hung Over

Emotionally hung over that is. I actually have never been physically hung over. But I am a grown up, I know people who drink, and I am a consumer of the mass media, so I think I have an idea what being hung over is like. And I imagine it is like this. Fragile, headachy, vaguely unwell, bruised and concerned about what happened whilst I was doing what I did to get hung over. Yes?
Your kind comments, calls and emails help, really. I feel less alone, and more cherished.
Things are not actually any better, I just have a day's breathing space from yesterday. My night was restless, (my poor Bald Man too) I had a few nightmares, (unusual)so I am tired, but still too unhappy to go back to sleep.
I am deeply concerned about the effect of this fiasco on my husband. He is severely affected, sad and very down.
But, lest you should think that your Jo is completely woebegone and desolate, my intensely optimistic nature is poking its' head up. I have called the boy's team members, and the calls are filtering back slowly as we begin to put together a plan to help our little family and our son. I am deeply aware and grateful that our son has services not available to others, and I have a support group, (that includes you, my darlings) to help us weather this storm and figure out where to go from here. And my sunny self posits that this "event" perhaps is the good news, for we may be able to get a handle on things that would only get worse with time. And because some of this is taking place only in my imagination, I might as well win, dang it! Why imagine the worst, when the best is just as easy?

Wednesday, July 09, 2008

A Day Of Infamy

My peeps, before this day really hit the road I was comtemplating a post to write. Then, all hell broke loose and now, now I am left with nothing to say.
I will say that Little Man's problems are increasing and we are dealing with them the best we can. But I am left wrung out from a morning spent crying and on the phone. If you know me and want the details, either call me or email me and I will give you the whole story. Right now I am too hurt and feeling too vulnerable to begin to discuss this publicly. Please keep us in your prayers, and if you have a kind word to leave, please do, right now, I am seeking the Balm of Gilead, and your kindness is some of the healing I crave.

Tuesday, July 08, 2008

Sorry

Um, yeah.. if you are imagining that I am not blogging because of badness, you would be correct. We had a long, very bad weekend with the boy and yesterday... well, that is a long story for a time when I have time to write it. He finally slept last night for the first time in almost a week and I think we are on an upswing. I have a meeting for work today, so I will try to post later, or it might have to wait til tomorrow. Stay tuned for updates...

Friday, July 04, 2008

Is It Just Me?

I am unsure if this little clip made me sob because of my son, or because this little boy and his story are completely heart wretching. You tell me, okay?



I totally snagged this from
Leelo's mommy
, a fellow traveler on the bumpy and sometimes very rewarding road of Autism.

Thursday, July 03, 2008

He Got Lost!

No, no, not Little Man. But our beloved Percy!

For my newer readers, this is a pic of Percival the Pump, our newest family member and quite necessary for the health and welfare of the boy.



Percy is especially needed since last Friday, eating has gone down the tubes and the boy is currently orally intaking less than 100 calories a day. Sigh.

Yesterday was a comedy of errors. And you see, it is all my fault because I went grocery shopping. I am sure you are wondering how going grocery shopping could lose a pump, but ultimately it did.
I went grocery shopping, I wasn't done yet, so I called Bald Man to see if he would be home when the boy arrived so I could finish up. The answer was affirmative, so I finished my shopping. I arrived home about 1/2 hour after Little Man did. He (Little Man, not Bald Man) was pretty angry that I hadn't been home when he got there, but we went and played at the water park and didn't think a thing about it. About 8 oclock, after we had gotten back home, Bald Man came in and said, "uh, I can't find Little Man's pump backpack." All I could think, was "oh flipping fetch, I wonder where it is??" Normally when I am home and Little Man gets dropped off, I ALWAYS check to make sure Percy made it home. Even if Bald Man had thought to do that, (he didn't) he couldn't have, because Little Man was really upset that I wasn't home and took off running up the street to go look for me. So Bald Man had to go chase him down and never even though of checking on Percy's whereabouts. Percy is so incredibly necessary right now, because the boy isn't eating! Add the fact that I think he costs like 1500$ and I was panicked.
First, Little Man goes to a special summer kids for other kids with special needs, but after, at about 3, he is picked up by an aide and he goes to a therapeutic after school program. So I called the After school program first, figuring they had picked it up, but not left it with us. 2 hours later, I still hadn't heard back, so I called the guys cell phone again, and he finally said he thinks it got left at the Summer programs. I was super annoyed that I had to call him back and he hadn't seen fit to call me back and tell me this... grrr....
So I called the lady who runs the summer program, it is 10 at night by now and way past my comfort zone for making calls at night. (I won't call people after about 9 unless I have permission, my mother's teachings hammered that bit of etiquette into my brain as a child!)But this was a desperate mom! And it isn't so much that he needs the weight as he just needs some calories to function. We just don't need to add to the foulness by letting him go hungry. The lady at the summer program had no idea, she isn't the one who walked Little Man out that day and his aide was a new guy who obviously isn't familiar with all this. His summer program is renting space from a local church, so I spent the next 45 minutes on the internet and hunting through the phone book for a number to find someone who could open up the space they use and have us get his backpack. Finally, success. I am apologizing all over myself for dragging this guy out at almost 11 to help me find the pump. It was supposed to bein Little Man's locker, I found the right one, opened it and there it WASN'T!!! Ack, now I am feeing pretty darn frustrated and anxious. The only other thing I could think was maybe I could call the Home Health Care company and see if they would be willing to drive a replacement out for the night. The nice guy from the church though was smarter and braver than me, and he started looking in the other lockers. Taaa Daaaa! Percy was in another kid's locker. I would have never looked there. So it wasn't all the new aide's fault. Even if he knew to take the stuff out of Little Man's locker, Percy wasn't where he should have been. So finally at about 11:15, we had Percy hooked up to Little Man, feeding him what he needs.
AND, you can see how my going grocery shopping ultimately led to a feeding pump being lost. And the moral of this story is: if my family would all stop eating, I wouldn't need to go grocery shopping and we would have found Percy much sooner. The End. Don't you just love happy endings? Me too!
P.S. The Zevex company, maker of Percy, is in Salt Lake City. I was able to finangle a field trip there today. I am such a geek, because I am over the moon excited to go!