Monday, March 29, 2010

The boy is a hazard to himself sometimes!


Monkey had his tonsil surgery on Tuesday, and on Thursday he tore in half his big toenail! His throat was still so swollen and sore, he was hardly talking. All of a sudden I heard this horrible screeching scream and went running. He was trying to move the rocking chair in the playroom and it smooshed his toe. When he tried to pull his toe out, it tore his toenail. As you can see it's still attached, but torn almost halfway across. I think it's worse than if it had come off, because I don't know what's going to happen now. It can't just fall off, because it's only torn halfway across? I have a bad feeling that I am going to eventually have to try and clip it off as much as I can. This will take numerous adults holding him down for sure. His anxiety whenever I clean it and re-bandage it are through the roof!

My poor Monkey. It hurts me just looking at it! It's torn all the way from the bottom corner where the dried blood is pooled, to that little red mark right in the middle of the nail. Halfway! Ugh. :(

In lighter news, I took him to see Alice in Wonderland in 3D today. It was good! More importantly, it was nice to get out on a "date" with just he and I. Tomorrow he is finally going back to school. He's been out for a week, and there's no school next week for Spring Break. He'll be in flip flops though, because of his toe!

Sunday, March 28, 2010

Isn't it BEAUTIFUL!! :)

I am so excited about my new blog look! :) I bought it from Adori Graphics and she is so sweet.

She even made me a matching button, so you can grab it and put it on your blogs. Isn't it lovely?? :)

Thursday, March 25, 2010

Interupting all this tonsil talk to rant about seizures

I know, can we get a post of happiness? I will have one soon, whether I have to pull the happiness out of my assskkkkkmenomorequestions. ;)

So Peanut is still having seizures, even one the increased dosage of Keppra together with her Neurontin. I just shot of an email to the neurologist to let him know. He mentioned adding in Depakote, but our Metabolicist says no way. Evidently Depakote is NOT good with a metabolic disorder, as it affects the body's metabolism in general. So I emailed the neurologist that, and asked him what our next option is.

I hate seizures. I hate that she has them and we probably don't even notice most of them. When we see them, they are so short. Head drops that last seconds. The head drops down, her arms go up a bit, and then back to normal. Staring spells that last 5-10 seconds. So if we notice them and they're this quick, surely we miss some. When I'm driving, I can't see her. When she's sleeping, when she's on the school bus. The bus driver has seen a few of them, mostly bigger ones. I know these short ones aren't putting her in immediate danger, but it still breaks my heart.

I hope the neurologist has a good suggestion!

Rough Morning

So far this has been a rough morning, and it's only 9am! :( Monkey woke up really sore. He is having a hard time swallowing at all, and now he says his tongue feels like it's burning. I assume they use clamps during the surgery to keep the tongue out of the way, as there's a cut and a sore on one spot that I can see. Monkey is tongue tied though, so he can't stick his tongue out very far so I can't see much.

He has had two popsicles so far, and his meds. He says nothing else goes down. We've tried jello, baby food bananas, and ice cream. These things were all fine yesterday, so today is starting out worse.

I told him we just need to be sure he eats popsicles all day and is peeing. I'm worried about dehydration, since he won't eat or drink anything except the popsicles.

This is rough! The ENT had told me that 8 or 9 is the age where a tonsillectomy starts getting harder than it is for little kids. Monkey is almost 10, so I guess it's normal for a rough recovery.

Cross your fingers that I can keep him hydrated and ease his pain some!

Wednesday, March 24, 2010

A Tonsilless Monkey







Yesterday was the big day. My Monkey boy was so scared. It's definately harder with an older kid, who undertands what's going to happen to him. I asked them to give him Versed before taking him and putting the IV in, as his anxiety level was already sky high. So they juiced him, and then wheeled him off. They said they would gas him to sleep before they did the IV, and the Versed was kicked in so he didn't care about the gas mask.

Surgery took 90 minutes, and the ENT came out to tell us about it. We had been on the fence about doing this surgery, as the ENT wasn't sure it was the answer to Monkey's sleep apnea. He said he thought it had about a 50% chance of helping, but the pediatrician agreed that we should try it. It's a good thing we did - his tonsils were very infected and full of yellow pus! He also said they were badly scarred from previous infections. Wow - Monkey has NEVER been diagnosed with tonsilitis! He has never complained about a sore throat, except the one time he had strep throat. My poor bub had such yucky tonsils and we didn't even know! The ENT also said that he had hardly any adnoid tissue, but he went ahead and removed it to be safe.

Hopefully this will help the sleep apnea. If not, we have to do a bronchoscopy to look at his airways. He has very small airways and a history of severe laryngotraceomalacia. CROSS YOUR FINGERS that the tonsillectomy stops the apnea!

He is sitting playing his DS right now. He's had a million popsicles, jello cups, and I made frozen pudding pops. He drank a flat 7-up, but it's hard to get him to drink. I hate to have to scare him into it, but I told him that if he doesn't drink enough and pee enough, we would have to go back for IV hydration. It sounds mean, but otherwise he refuses to drink. Poor Monkey. :(

The pictures below are in order from when we got to the hospital and checked in, to the recovery room, to home. I love the one with the popsicle, he was still so drugged but insisted he was ready for a popsicle. And of course the last one, nothing makes him feel better than snuggling with his Hannah dog. :)

Monday, March 22, 2010

Be careful what you wish for

We may have "the answer" to Peanut's underlying condition. We are waiting on information on how to run the blood test to confirm. The only lab that can diagnose this disease is in Italy. Our insurance doesn't want to pay to send the blood there. We are working with a metabolic geneticist to figure out how to get the blood drawn and send it to Italy.

I don't know what to ask you to pray for. We have always wanted "the answer", the diagnosis, the bottom line. But if this disease is the bottom line, it's not good. :(

Saturday, March 20, 2010

My Monkey boy is having surgery


He's going in on Tuesday to have his tonsils and adnoids taken out. He has obstructive sleep apnea, and they are hoping that this surgery will help that. He is SO high anxiety, this is not going to be fun. The ENT says the anesthesiologist will be able to give him some oral Versed before putting in the IV.

I was wondering if any of you would consider mailing him a card? He mentioned that Peanut gets cards and such in the mail when she goes in the hospital sometimes, and I know he would LOVE to get some mail of his own! If you are interested, please leave me a comment with your email address. I hope this doesn't sound rude, but I will only be giving our address to people who I have blogged/commented with for a while, not new posters. Surely you can understand!!

Wish us luck Tuesday. We are stocked up with pudding, jello, popsicles, and gatorade.

Wednesday, March 17, 2010

Wordless (Green) Wednesday




Happy St Patrick's Day!

I have no pictures yet, I realized this morning that I left my camera at school yesterday. :( I will update with a photo later!

Monkey and I are going to California Adventure (Disneyland's other park) after school today. It's minimum week for conferences, so it'll be a good day to go.

And the weather is awesome - it's supposed to be 77 degrees today. Could it get any better?? :) (I know, sorry Lacey .... )

Tuesday, March 16, 2010

Not medically necessary.

Peanut's car seat was denied by both our insurances now. The therapist did the write-up to get a Britax Traveller or whatever it's called. They explained how she doesn't have enough trunk control for a regular booster seat and how when she's tired or has a seizure she needs head control help.

The first insurance said it falls under the guise of the second insurance. The second insurance said it's not medically necessary.

What the f!*#? Seriously. How is it NOT necessary that she be safely restrained in the car during travel? Should she be homebound? Should she be unsafe in the car?

Ugh! I guess I am starting the appeal process now. And we are waiting to hear on her Sleep Safe Bed. I assume there's no chance in hell they'll think THAT is medically necessary, eh?

Tuesday, March 9, 2010

Does anyone need a Passy-Muir Valve?


I used to run a parent support group for parents of special needs kids. Because of that, I have lots of supplies that people didn't know what to do with. Most of them I have found good homes for. This one, I have not.

I have an aqua blue Passy-Muir valve. It is a Trach/Vent Swallowing and Speaking valve. PMV 007 valve. 15mm I.D. 22mm O.D. Dual Taper

It has a matching aqua little storage box, and the booklet. It is in the fancy little ziplock bag it came in.

Does anyone need/want this?? I'd be happy to mail it to you!

Sunday, March 7, 2010

Look who we got to play with! :)


Monkey and I went to Disneyland on Friday to play with Lacey and Jaxson! And of course Ray, Mondo, Carter, and Tanner. It was so much fun. Monkey keeps telling me now how much he wishes they lived here because they were instant friends. And I feel like I have known Lacey forever. Talking with her and Ray is just so easy and comfortable. I love Jaxson's family. And honestly, what a sweet, sweet boy Jax is. He has a piece of my heart, that's for sure. :)

Saturday we met up with them again, at Downtown Disney. Peanut, Monkey, me, and the Dad all went. We had lunch with their family again and then the kids ran around like rugrats and played a bit while we talked. It was, again, so much fun. I really hope that they are able to find a way to move down here!!





Thursday, March 4, 2010

Busy week!



I haven't had a chance to sit and blog all week. I can't believe it's already Friday! We are taking a break from OT and PT for Peanut for a while. She just hasn't made any gains in at least 6 months. We see small "inchstones" - we don't like to wait for milestones to celebrate. :) So we haven't had to go to OT/PT all week, and no one had any doctors appointments this week. Wow!

I was in charge of our school's Read-A-Thon on Tuesday, which was Dr. Seuss' birthday. It was a ton of work but so much fun! I had the mayor of our city, policemen, firemen (who got called out and had to leave), and the librarian from the big children's library come. We gave out books to every kid who participated, and had a blast all day. Any kid who brought in a pledge of any amount got to wear their pajamas, so that made it extra fun. :) This is Monkey and one of his best friends since 1st grade. He calls her and another friend "His Girls". LOL



Yesterday we had a BMX show at school. It was awesome! It didn't hurt that the guys were incredibly cute, but it was so much fun! The kids loved it and I got some really cool pictures.






The only downfall of this week was that the Hubby woke me up at midnight because he was short of breath. He had been up for two hours already dealing with it. I told him it was anxiety and to take one of my Xanax. He said no, it wasn't. So I called my Mom, she came to stay with the kids, and off we went to the ER. End result, it was anxiety. It took most of the early hours of the morning though, so I am YAWNING a lot. Need coffee!

Tonite I am going to the cheapy theater to see The Lovely Bones with some friends. It'll be nice to get out. Tomorrow I am pulling Monkey out of school early so that we can go to Disneyland and meet up with Jaxson and his family!! I am SUPER excited about that. :)