Sunday, May 31, 2009

A few random photos

Fun random photos! I know, you're wondering why the hell there's a picture of my kitchen sink! LOL I got a new stainless steel sink, that's why. You can see how icky and stained the old ceramic coated one was. It wouldn't bleach, it looked gross, etc. Yay for a new one!
Monkey had Open House last week, and all the 3rd graders square danced. How cute were they!
The last ones of Peanut are the other day after her bus ride home from school. They must have really worked her, she never sleeps like this.

Special Olympics Pictures!

The Special Olympics at Peanut's school is a BIG DEAL every year. The entire school surrounds the black top, each class "adopts" a special ed kid, and they make signs rooting the kid on. It's awesome! This year, Peanut got assigned a fifth grade helper, and big brother Monkey helped too. It is always fun, although loud and definately overstimulating. They all get ribbons at the end. The theme was red, white, and blue. How cute was our wheelchair?? :) When I can figure out how to post videos, I will post one of the wheelchair race!

Adaptive PE Rodeo

A few weeks back, Peanut's school had their annual Rodeo. It is set up by Adaptive PE, and involves the general education 5th graders as well as the special education students. Each special ed kiddo has two general ed kiddos. One of the general ed kids is blindfolded, so that he is blind. The other general ed kid has to give the "blind" student directions for walking around the rodeo, and playing the games. It's a lot of fun, and the kids always walk away going "Wow, it is really hard to be disabled". It's a great learning experience!

Thursday, May 28, 2009

Special Olympics

Peanut's school has a huge Special Olympics every year, and it's today! They invite all the special ed kids from Monkey's school also, so it's huge. I am taking Monkey out of school so he can be Peanut's "partner". It's always a blast!

We are headed to WalMart as soon as Peanut's bus gets here. The theme is red white and blue so I want to get something fun to decorate her wheelchair with when I get there. :)

Pictures and video to come later of course!

(Oh, and I will update on the poop issue later as well. LOL)

Tuesday, May 26, 2009

Still no poop.

I gave Peanut two teaspoons of Miralax on Sunday and Monday. Still no poop. I was trying to remember the last time she pooped, because our nurses track that kind of thing. I have to be able to tell the nurse today when Peanut last pooped and honestly? The last one I remember was Monday. Not yesterday, but a week ago. That can't be right? I better try and rack my brain a bit more.

Either way, it's obviously been a while. I guess the two teaspoons of Miralax is not enough. I will go to three teaspoons, which is a tablespoon I believe? Hopefully she will poop soon. I guess a suppository is in her afternoon plans.

How much miralax do YOU use on your kid? How much do they weigh? I am afraid of increasing it too much and having never-ending poop, but I guess that's better for her than no poop.

How many times can I say poop in one blog post? :)

Monday, May 25, 2009

Trying Miralax.

We haven't used Miralax with Peanut in about a year and a half. She has pooped regularly, if not often. She was pooping three times a week, until we started the blenderized diet. Now she only poops twice a week, and it's not fun for her.

We have started Miralax as of yesterday. As some of you know, it's a hard medication to figure out. We started her on a low dose of it, in hopes of avoiding blow-outs. She didn't poop yet. I am going to up it today. It's always proven hard with Miralax to find the dose that makes her poop, yet not too much. Hopefully we can find that dose quickly and without much mess. ;)

Can you imagine if our children read these, and realized how much we talk about things like their poop schedules? They'd kill us! LOL

Thursday, May 21, 2009

My trip to the spine doctor today ....

He said that my MRI did show minor disc bulging, but it isn't enough to cause the pain I am dealing with. The pain in my lower back and down my right leg is definately nerve pain. He is ordering an epidural of pain relief/steroid to the area, and put me on Neurontin. Now Peanut and I take the same medicine! :)

He also prescribed Vicodin, but I can't take it. How will I wake up at night if Peanut does?

The biggest thing is that he ordered a bunch of labwork. He thinks I have Rheumatoid Arthritis. I have some finger joints that have been "deformed" slightly, one ankle is larger than the other, I am SO swollen and stiff in the mornings. I am hoping it's not RA, it seems from reading that it's not great. But there are some medications to help, and at least I would have an answer.

It's hard to deal with my own medical issues, when I am always enveloped in Peanut's. I always put myself on the back burner, but the pain is unbearable at this point.

I hope the Neurontin helps me sleep tonite!

Tuesday, May 19, 2009

Prayers for another family

Little Isabella/Ella has gone to heaven. She was an adorable little one with a mitrochondrial disorder. Please keep her family in your thoughts!

Monday, May 18, 2009

Post-void residual, AKA left-over pee.

I had to track Peanut's post-void residual this weekend. What that means is that we had to watch her diaper carefully, checking it every ten minutes. ALL WEEKEND. It is easy to do, since her diapers have a wet detection stripe on them. They are all white, with two yellow stripes. Once a drop of liquid hits the stripe, it turns blue. This made it easy to leave her in a diaper and shirt (it was hot anyway!) and just visually check it constantly.

As soon as she peed, we had to catheterize her into a cup and measure how much we got out. This shows how much urine her bladder retains after she urinates. Hence the neurogenic bladder. Here are her numbers.

Diaper contained 1 oz of pee, cath'd out 58 ml. Yes, 58! Almost two ounces!
Diaper contained 4 oz, cath'd out 26 ml.
Diaper was dry, but it had been 3.5 hours since she peed and she was getting irritable. Cath'd out 54 ml. Again almost two ounces.
Diaper contained 2.5 oz, cath'd out 32 ml.
Diaper contained less than 1/2 oz, cath'd out 29 ml.
Diaper contained 2 1/4 oz, cath'd out 35 ml.

I have NO clue what normal residual should be, but I'm thinking it's not almost two ounces!! I faxed these numbers to the urologist, now we just wait for authorization for her VCUG. It looks like we are almost definately going to get the Mitrofanoff done within a next month or two.

Anyone else cath normally, do these numbers sound low/high/normal for post-void residuals?

Sunday, May 17, 2009

A reminder to get emergency supplies

We just rode out a 5.0 earthquake that was centered very close to us. It was a big, long one. Poor Monkey, he has some serious anxiety issues and he literally went into a panic attack. He is still freaked out, almost an hour later. I had to sit in the bathroom while he took a shower, and I have a feeling I will have an almost-9-year-old in my bed tonite.

As the title says, it's quite a reminder that we should have an emergency kit somewhere. We have lots of bottled water and formula for Peanut and canned food, but not in a central, united place. We should really do that. I will make it a goal, to do within the next week or two!

Do YOU have an emergency kit? What does it contain? And where is it, what is it stored in? How long would it last you?

Lastly, we deal with earthquakes in Southern California. It's really our only natural disaster here. My thought is that if I make an earthquake kit, in a big rubbermaid container, where do I put it? If the earthquake is big enough that our house collapses or something, would I be able to get to it? Would the garage be the safest place, would it not collapse as well? I guess there's no guarantee that anywhere is the BEST place.

Things we have to deal with even more as parents of special needs kiddos. We need extra supplies that we wouldn't be able to borrow from a neighbor or someone. It's something I definately need to think about and act on!

Wednesday, May 13, 2009

What a day.

This was a day of appointments, tough discussions, and frustrations.

Our orthopedic appointment was at 8:30. We got called in to our room at 10:00. They sent us for hip xrays. The attending came in at 10:30 (not our regular doctor, the one we were scheduled to see). She said that she reviewed the xrays with the ortho and Peanut now has mild hip dysplasia. She showed me the xrays, and compared them to ones we did two years ago. There's definately a difference. Since it's mild, the ortho says we can wait a year and then redo xrays, and discuss surgery. If she starts having pain or dislocations from it, we will go back sooner. This is major surgery. Breaking the thigh bone or something and reshaping it? I don't know, it blew me away and I lost what she said. Anyway, we were done at 11:00. So 3.5 hours later, and five minutes of talking to the attending doctor, amnd we were done.

Then we drove to the urology clinic. Unloaded the wheelchair again, all her supplies, and headed to the elevator. Which had an Out Of Order sign on it. :( Went back to the car, put her in the car seat while I reloaded her wheelchair. Lugged her and all our supplies up two flights of stairs. And yes, I have bulging discs in my spine and arthritis in my hip. LOL

The urologist agrees that cath'ing isn't working for us. It is impossible to do it by myself, she is SO strong and opposed to it. I showed him how I try to do it solo, and he agreed it's impossible. He tried, he couldn't do it alone. If we need to catheterize every 4-6 hours, we need surgical intervention. He explained that a vesicostomy is best if you have high bladder pressure, which my Peanut doesn't have. Or didn't, at her last VCUG. He thinks we will be best served by a Mitrofanoff, through her belly button. (Click here for info on Mitrofanoff)

He is ordering a VCUG to check the bladder and it's pressures. I am to log post-void residuals for a while. This should be fun. When my husband is home to help me, I am to check her diaper every 10 minutes. As soon as it's wet, we have to catheterize her and see how much we get out. This would be her post-void residual, or the amount left in her bladder after she pees. He wants us to record 10 of these to get a good average.

The VCUG and post-void residual levels will tell us what to do. Also he says that when we do this surgery, he will be rebuilding her urethra. It does not point in the normal direction, and is situated kind of oddly. So this will be fixed at the same time.

He says this should happen within the next month or two. Wow. Well, at least now we can schedule her teeth to be cleaned, since she'll be sedated. ;)

Tuesday, May 12, 2009

Ha. I thought I had no plans!

Okay, thinks I forgot about! Here I thought Thursday was going to be the "easy" day. LOL Thursday morning Peanut has her annual Adaptive PE Rodeo at school, families invited. And Thursday night is Chuck-E-Cheese night fundraiser for Monkey's school. So much for a non-busy day. ;)

I had lunch with Monkey's teacher today, and her gorgeous baby girl. They finally got a diagnosis for all her heart conditions, it's Shones Syndrome. It's not good. :( Evidently her prognosis for survival beyond one year is only about 20%. I just held her and sniffed her blond head and wanted to bawl my eyes out.

If you've been following Kayleigh's blog, you know that she passed away. Again, I sit her and want to cry my head off. I will definately be hugging Peanut TIGHT tonite!!

Monday, May 11, 2009

Crazy Busy Week

This is one of those weeks where I know ahead of time I am not going to get laundry done, dishes will be piled up, and I can only hope to try and get Monkey a shower each night.

Today I spent the day at Monkey's school, where I am the co-president of PTO this year and will be President next year. I am also the Box Top Coordinator, and I had a flier to send out about that. Oh, and I run the school-wide reading program so I needed to make a list of kids who made their reading goal EVERY week of EVERY month so far, and get invited to the end-of-the-year reading picnic. Oh, and I co-run Student Store on Fridays and we got a new shipment in today so we had to organize that cabinet. Oh, and ..... (you get the idea). ;)

We have no nurse today. We are supposed to on Mondays, from 1-9. She said she needed to come in late today, at 3. I said okay, since she asked me ahead of time. Then she texted me around 2 and asked if she could come in around 5. No. That doesn't work. That doesn't help me at all. Just don't bother coming in. Oh, and she's scheduled in the hospital Tuesday and Wednesday this week (she works numerous nursing jobs) so she can't come in until Thursday. GREAT. Because I did not need to spend hours working on eBay this week, trying to make money.

I had to take Peanut and Monkey to the Children's Hospital this afternoon to pick up a CD of her bladder/renal ultrasounds, to take to Wednesday's urology appointment. The radiologist put all of her bladder/renal ultrasounds on it, so the dr can compare them.

When my lovely husband got home from work, I ran out the door to the gym. I try and get in as many aqua aerobics classes a week as I can, as it is go for my back/hip/joint problems.

Tomorrow I am taking Peanut out of school early to have lunch with Monkey's teacher. I think I mentioned before that she had a baby in December. The baby was born with a heart condition, and had open heart surgery when she was 5 days old. Things look even worse now, she has mitral valve insufficiency. There is a surgery to fix it, but at her size the survival rate is nill. They are hoping that as she grows a bit, the valve will too, although it has no grown at all since birth. The fear is that it will not grow with her, and the bigger she gets the worse it will get. They are not giving her good odds for the baby to survive another 6 months. :(

Anyway, I am taking Peanut and meeting her and the beautiful blond angelic baby for lunch tomorrow. I am SO excited about this!! :) Then she has PT/OT Tuesday afternoon.

Wednesday morning Peanut has an orthopedic appointment. This doctor has the personality of a snail. Blech. I think we're supposed to attemp weight bearing hip xrays. We'll see how well she cooperates!

Wednesday afternoon we hasve the big urology appointment. Like our blog friend Annabel, we are looking at surgery for a neurogenic bladder and hydronephrosis. Although to be honest? A vesicostomy doesn't sound horrible. Catheterizing a 30 pound beast alone? That's horrible. I can't do it alone. So when I don't have a nurse or a husband home to help me, Peanut doesn't get cath'd. It's just impossible to do without leaving bruises on her. She is SO strong, and so determined not to get cath'd. It doesn't hurt her. She doesn't cry, she just hates it.

Thursday .... dare I say it? I think we have nothing except PT/OT in the afternoon! GASP! I might be able to get some laundry done Thursday morning.

Friday I volunteer in Monkey's classroom, then run Student Store. This Friday we have a special lunch with the principal for 30 kids. Holy cow. A luao lunch for 30 children. What a nightmare. LOL

Saturday we are going to my Grandmother's house to celebrate a late Mother's Day. By Sunday, if I'm still breathing, I will be buried in laundry and dishes for sure!!!

I hope you all have less busy weeks that I do. This will be a LONG one. I am not looking forward to Wednesday's appointments. Wish us well!!

Sunday, May 10, 2009

Happy Mother's Day!

To all of my friends, I hope that your Mother's Day was wonderful!! I had a great day. How could I not, when these two beautiful faces are part of my life?

Monday, May 4, 2009

Not Me! Monday

This is the first week I am participating in Not Me! Monday! This is a fun thing that an awesome blogger started. For more information about it, or to see links to many other Not Me! blogs, check out MckMama's Blog!

Today for lunch I did NOT eat at Taco Bell, simply because I drove by and it called my name. I did NOT break my diet just for the sake of a crunchy taco and a bean burrito. I most definately did NOT get sour cream added to the burrito!

I did NOT make Peanut's blenderized food this morning with all jarred baby foods, rather than homemade baby foods. I was NOT too lazy to blend up the peas and pears that were in the fridge waiting for me.

I did NOT let Monkey buy a stupid egg of slime at the Dollar Tree while I was shopping for PTO supplies, simply to get him to stop whining. I would NEVER bribe my child with a dollar's worth of ick!

I did NOT agree to be the PTO President next year at Monkey's school. I did NOT let myself get talked in to this position. I will NOT complain about it all year!

I am now going to NOT make Sloppy Joe's from the stuff in the can, and call it a meal. I would definately NOT serve that crap to my family. :)

Saturday, May 2, 2009

Thanks for the g-tube help, now a latex allergy question!

I am full of questions lately. How amazing is the blog world, that we can ask these things and gets answers from people who REALLY experience them, not just a doctor who's read a book about them! :)

As for the g-tube residual issue, it's definately not due to fast metabolism. Her gastric motility is SO slow, she takes erythromiacin three times a day to help it along. At one point it was so slow they wanted to classify her as having a paralyzed stomach, and we were on j-tube feeds! It has improved some, but it's definately not emptying fast enough for that to be the answer.

I appreciate all the answers though, you mommas are all awesome! I will definately ask our GI about it at our next appointment.

My next question is for anyone who is allergic to latex or has a kiddo who is allergic to latex. I have always been told that bananas, kiwis, and avocados are cross-allergens and to avoid them with Peanut. But in talking to people (therapists, other moms, school nurse, etc) no one else avoids these things. So I researched it a bit, and most sites say that about 50% of people with a latex allergy will also react to these foods.

Now that I am making Peanut's blenderized diet instead of all formula, I would like to try some of these. I am wondering if anyone has actually had a reaction to them, who is allergic to latex? Perhaps I can try slowly and see what happens.

Anyone? :)

Friday, May 1, 2009

Question for those with MicKey buttons

I watched a friend bolus her son food this week, through his mini button (not mickey). She put most in, and then it was clogged a bit. She pulled back, and most of what she had just given him came back into the big syringe.

I can't do that with Peanut's button. They have always asked me about residual, I can't get any. I have been experimenting this week even, and I can't get any! I put in her 100 ml of baby food mixture. Pull back with the empty syring. Nothing comes out!! But if I just put a syringe on with no plunger to vent her, air comes up.

Is this a MicKey button thing, or just a Peanut thing? We have never ever been able to pull anything back out of her stomach with it. It seems weird!