Glug, glug, glug

Rain, rain, go away! You are making me grouchy and restless!

Tornado? Holy cow!!

(This picture was not taken today, it was lifted from a weather site)

I live in an area that does NOT get tornados! We get earthquakes, but no tornados or hurricanes or anything like that. Today, however, a tornado passed right over us! It was CRAZY. The schools were on lock-down, Monkey had to "duck and cover" for more than half an hour. That is not something we here in Southern California are used to.

There was a lot of flooding, downed trees and power lines, a few cars flipped over. The storm has passed for now, but the weather report says rain through Saturday. They say we haven't gotten the worst of it yet.

It is hard to take Peanut to appointments and such in the rain. Isn't this why we live in Southern California, so that it can be sunny every day?? :)

Digging out from under this week

Wow - having a sick Peanut takes every minute of every hour of every day! She doesn't want her nurses to cuddle her when she's sick, even though she loves them both to death. We have been blessed with two amazing nurses for almost two years now and they are like family. But when Peanut is sick, she wants "ma ma ma ma ma mom!". I can't say I blame her. :)

She is finally on the mend. Still getting decongestants around the clock and a bit rattly and snotty, but nothing scary anymore. We actually got through this one without a hospital trip. YEAH!!

Her Mitrofanoff hernia is starting to cause problems I'm afraid. The tract that we catheterize through seems really skinny now. And it seems to be uncomfortable when we cath it. She arches her back and wiggles and tries to get away. I guess I need to call back the urologist and ask him when we decide that surgery to fix it is necessary. I just hate the thought of another surgery. The mitrofanoff recovery was rough.

We have a busy week, and it is raining. We are at the very front of a HUGE storm coming through our area. This means I can't take Peanut's wheelchair anywhere, since our lift is on the outside rear of my van. Luckily we were given a wheelchair stroller, but it's not as comfortable or supportive for her. Tuesday/Thursday she always has PT/OT. I pick her up from school and take her, but I can't do that in the rain because I have her wheelchair. So I guess she will miss therapy, which makes three weeks in a row. Tuesday morning she has an appointment with the new pediatrician. I am actually really excited to meet her and introduce my Peanut to her. I am also a bit nervous, as is to be expected. Wednesday morning she has a GI appointment and an Orthopedics appointment. The GI is routine follow-up. The ortho is a follow-up to her hip xray six months ago. That xray showed hip dysplasia. The ortho said we could wait a year to re-xray and decide if she needs surgery. Her physical therapist insisted recently that we redo the xrays now, at only 6 months. She said the clicking we are hearing and the weight bearing issues are worse. Ugh. Hip dysplasia surgery scares me!

On top of that, my mother-in-law is here this week. It'll be nice to have an extra set of hands, but it's still another person to deal with. LOL

I'm ending this post with a picture of Peanut's foot I took last night. I saw a picture of Carter's toes when he was a baby, and how long they were. It made my think of Peanut's little toes. My Peanut has baby toes, and she's 6 years old! Look at these teeny toes. Her pinky toe is not even an inch long! She wears a size 6.5 shoe still - in the baby section. :) I love her little feet.

It is definately a hernia.

We went to the urologist this morning and of course, the lump was hardly there. I told him that it is usually there, but sometimes it's not. Thankfully I had taken pictures of it last night when it was big! He said it's definately a hernia. He had to make a hole in her stomach wall for the Mitrofanoff to tunnel through. He said if you make the hole too small, it causes strictures around the Mitrofanoff (appendix) and makes it unable to catheterize. If the hole is too big, it can herniate. So that's where we are.

For the next month I am to "milk" it back in every time I notice it. We have an appointment the first week of March. If it gets any bigger or starts to hurt her, we will have to repair it urgently. If it stays the same, it can wait a bit longer. He says it will definately need to be repaired in the near future. Ugh!

Here are the pictures I took of the hernia last night. The little black dot next to the opening was a stitch from surgery, it actually came out last night finally when I was cleaning the stoma.





She's still quite sick, unforfunately. She had a fairly large seizure in the urology waiting room, which freaked out most of the other parents. One mom, whose kid had a cochlear implant and some other issues, asked if I needed help. The other people all looked scared. Luckily it only lasted about 45 seconds. She's had a lot of head drop seizures today, and some weird mouth things going on that I assume are seizures. Nothing else big. Tonite is my husband's birthday. He and I are going to Red Lobster for dinner. Thank heavens for nursing!!

Peanut is sick

She came home a bit stuffy yesterday. This morning she was a bit worse, so I gave her cold meds and sent her off to school. They called me later on to come pick her up. She is SO sick. She is congested and dripping, gurgly, and hoarse. She is just plain miserable. Illness sets off her seizures, so I'm nervous. She has an appointment in the morning with urology, her Mitrofanoff looks like it has a hernia. Hopefully she feels better in the morning. A sick Peanut is a miserable, crying, flailing Monkey.

Off to the doctor

Monkey's school called to tell me that he's in the nurse's office with a headache. I called the pediatrician, I am going to pick him up from school and take him to the doctor's. Hopefully we can do something to get to the bottom of this mess!

A million phone calls to make

I never updated about my House Party! That's because I was too hungover all day Sunday. LOL I will post about it later with a few pictures. :)

In the meantime, I had to take Monkey in to the ER last night. He had a horrible migraine. He has had a fundo so he can't vomit, but he was just retching and retching. We signed in and sat and waited forever. By the time they called us in, his pain was down to a 3 (from "a serious 10 mom"). The doctor came in, said it sounded like a migraine, good thing it was over, and went to do discharge papers. Monkey fell asleep on the gurney, and then we went home.

I am going to call his pediatrician this morning. I can't imagine that this is NOT related to his insmonia. Even on Xanax and now Ambien, the boy can't sleep! I gave him the Ambien during the migraine, thinking if he would fall asleep it would help the migraine. An hour later in the ER he was still awake. It took a few hours before he fell asleep. Something is not right!

He woke up this morning tired but feeing okay, so I sent him to school. I talked to his teacher and the office, so they know if he comes in sleepy or just icky to call me.

Of course as I put Peanut on the bus this morning, she had three head drop seizures in a row. And her Mitroffanof appears to have a hernia near the opening now.

Can I take a nap now??