Wednesday, January 27, 2010

Sleep study and a rainbow.







Monkey's sleep study last night was easy. It makes me realize how much harder everything is on my Peanut, than on typical children. The taping and wires and touching of her face freaks her out. Monkey just giggled his way through it, and wanted me to take pictures and show him as we went. He said he looked like Wolverine from X-Men, while he is being transformed into something else? I don't know for sure, LOL. He woke up a number of times, the longest from 3am-4am. The tech said he didn't have extreme apnea, because we didn't have to trial the cpap. I said does that mean he had NO apnea, and he said he wasn't allowed to discuss the results. Then he said we would have to stay all day, doing latency testing and others. Then he came back and said the doctor said we could go home. So ... did they find something? Did they not? Who knows. We have to wait 7-10 days for the results.

I got home in time to help my husband get Peanut ready for school. Good thing, because her clothes were mismatched and he was not planning on brushing her hair. He says it's too hard, LOL. I asked how she did last night, he said she was up alot. I picked her up, she's hot. Temp of 101. Sick again!! She can't seem to stay healthy lately.

So I am home with two kids today. One who is showering right now to scrub the glue off his head, and the other who is sick. I think after Peanut's nurse gets here, I might go to the movies. I really want to see Extraordinary Measures, and I'm definately up for a good cry right now!

As a mood lifter, here are pictures of a rainbow out our back door the other day. :)


Tuesday, January 26, 2010

Overnight sleep study tonite

Monkey has a sleep study tonite, to hopefully help figure out why he can't sleep at night. He still has not slept through the night since before Thanksgiving! We are all exhausted. We check in at 7:30pm. If they find something overnight, we go home in the morning around 7am. They may put him on a CPAP as a trial halfway through the night. If they don't find anything overnight, we stay tomorrow until as late as 5 or 6 pm doing other testing.

I hope they find something quickly. We are all so tired ... he is even falling asleep in class. It's bad.

I am happy that it's Monkey for once, and not Peanut. I will be able to go to the bathroom without him freaking out, unlike with her. It should be easier, since he can talk and understand what's going on. Wish us luck!

Friday, January 22, 2010

Yikes, it's hailing now!






Oh my goodness, I just ran in the house in the midst of a hailstorm! Ouch, those suckers HURT! My dogs are not at all happy about this week long stormy weather. They keep fighting with each other, they are antsy because they won't go out in the rain. The weather report says today is the last day of these storms. It's supposed to be sunny until Tuesday, rain Tuesday, and then go back to sunny. Yay! :) Look at my poor storm beaten back yard!

I took these pictures of Peanut this morning, the only day she went to school this week. Too many appointments and rain storms and such. She was SO excited! When I mentioned seeing AJ (her boyfriend in class!) she smiled and laughed so much her eyes were squished shut.

My husband and I are going to a comedy club tonite, to celebrate my birthday early. It's next Thursday, but we have a sitter tonite. I am excited! One of the comedians is the guy from Kid Rock! :)

Thursday, January 21, 2010

Heading out in the downpour

Peanut has her last appointment of the week today, neurology. Good thing, because things are not well with her seizures and personality. I will update later today on all four of her appointments from this week!

Thanks for checking in on my Peanut. I really love all my Blog Mammas! :)

Wednesday, January 20, 2010

Glug, glug, glug

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

Tuesday, January 19, 2010

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?? :)

Monday, January 18, 2010

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.

Wednesday, January 13, 2010

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!!

Tuesday, January 12, 2010

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.

Monday, January 11, 2010

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??

Saturday, January 9, 2010

House Party, Baybeeeee!

I am throwing a House Party tonite! Woot Woot! :) It is through HouseParty.com and I am excited. I got a Wii Your Shape game, the new Jenny Mcarthy game, to try. A bonus dance party game, and a bunch of Jello Mousse Temptations to try! They send the spoons, napkins, and even sweatbands!

Of course, we are also having beer and drinks and appetizers and yummies. Afterward, my friend's brother is in an AC/DC cover band playing at a local dive bar.

This is going to be a fun night! My mom friends (combining my PTO group and my Cerebral Palsy group), lots of drinks, music, and a late night. I am sure I will regret it in the morning. LOL

Friday, January 8, 2010

What an afternoon!

When I opened the door to let Peanut's nurse in, all three dogs ran out. Sometimes they go out the door and I yell get back here, and they do. That's it. Today, all THREE ran out. And kept running. The boston terrier ran to the neighbor's yard, to see their dog that was tied up outside. I grabbed her, handed her to Peanut's nurse, and ran after the other two. They ran towards the busy street. And kept running! One turned the corner, and I managed to grab her collar. The other ran across the four lane street, literally in between cars. I thought for sure she was going to get hit. Then she kept running, and ran down the block. I couldn't chase after her, because I had the collar of the other. These dogs each weigh 35 pounds, so I couldn't very will pick her up and run. Not to mention I was in my flip-flops, and had a hand full of mail. Of course Peanut's bus pulled up right then to drop her off, so her nurse couldn't run with me. I went home with the one dog by the collar, to get the car and chase the other down. She can running back SO fast, and in the house. I think she must have almost gotten hit, because she was terrified. I was PISSED and relieved, at the same time.

Then I went to Monkey's school, to pick up him and a friend. The friend was missing. It took 15 minutes and the entire school staff to find him hiding in the bushes with another boy. The kid who I was supposed to pick up, decided he wanted to go home with the other kid, instead of Monkey. I was on the phone with his mom hysterical, she was hysterical. The school was ready to call 911. Finally someone saw them in the bushes. Holy CRAP that was scary. We had two attempted kidnappings right before Winter Break, on the street one over. So we are all on high alert. I don't even need to mention how pissed Monkey's friend's mom was when she got here. The friend was still giggling, thinking it was funny. I told him "You better wipe that smile off your face, your mom is PISSED. I would not be laughing when she gets here if I were you." She called me a bit later to apologize for him, and let me know that his butt was beat and he would NOT do that again.

Oh my gosh. So I decided that I am not making dinner, I am ordering in pizza. I have a party here tomorrow for about 12 other moms. I was supposed to spend all afternoon cleaning and getting ready. Instead I spent the afternoon trying to relax and catch my breath!

Thursday, January 7, 2010

Houston, we have poop!

I gave Peanut some milk of mag yesterday ater school. No poop. Gave her more four hours later. No poop. She got her normal Miralax, one tablespoon (three teaspoons). Put her to bed.

Woke up to a poop explosion! It was gross. I hope she feels better today! :)

Wednesday, January 6, 2010

It was nothing.

Her ears were a little waxy, but they always are. He said her nasal passages looked slightly inflammed. That's it. She still hasn't pooped since Sunday morning though, so I went out and bought Milk of Mag. Gave her a teaspoon and will repeat in 4 hours if still no poop. I hate that even the act of pooping can cause my little girl so much problems!!

Sorry for the delay in updating. I had an allergic reaction to something at the walk-in clinic. My eyes were watering like crazy and I got a horrible migraine. I slept all evening and night, took the kids to school this morning, and slept again. It's almost gone now. We went to lunch with some friends after school and us moms had a couple of beers. That always makes things better. ;)

Tuesday, January 5, 2010

Headed to the Walk-In clinic

I got a call this morning from Peanut's teacher, and I could hardly hear her over someone screaming. Peanut had a small seizure, but then started screaming and had been inconsolable for almost 45 minutes. I went to get her and she wasn't screaming anymore, but she surely wasn't happy. Putting her in the car, securing her wheelchair on the lift, she was crying again.

We just switched pediatricians. I am SO nervous about this, and I wanted to meet her and introduce her to my Peanut when things were status quo. Not when something was wrong. She doesn't have any openings today, but their walk-in opens at 1:00. I just printed her medical sheet - meds, allergies, specialists, important hospital/er/etc dates. I'm nervous about taking her somewhere new and trying to explain her to someone quickly.

I'm sure nothing serious is wrong. Right now she's sitting in the living room watching LazyTown. Not crying, but not laughing at the show that always makes her belly laugh. She's been having poop problems, so I'm going to see if they'll do an xray of her belly. Also check her ears and throat, and do a urine dip. I'm sure it's something simple, but it does suck when your kid can't tell you what's bothering them!

Monday, January 4, 2010

2009 - a review!

I can't believe it's 2010. Remember when the world was supposed to come to a halt 10 years ago? I was pregnant with my Monkey boy and everyone was freaking out. I just knew it would be alright, because I had a little heartbeat in my stomach. :) So here we are, 2010 ... so what better to do than wrap up 2009?

January 2009 - We took a family trip to Santa Barbara. We went to the zoo, the aquarium, natural history museum, and the beach. It was a lot of fun! My Peanut became a pro at taking her socks off ... although not the conventional, boring way!



February 2009 - Not much happened this month. We like quiet times! :)



March 2009 - Monkey had to make a solar system project in 3rd grade. Peanut go her big girl bed!




April 2009 - We got annual passes to the local zoo, and I took this cute picture of the two most amazing kids!



May 2009 - Peanut had Special Olympics at her school. The general ed kids were matched up with the special ed kids. It's a HUGE deal at her school, and I just love it every year! This is also when we had our awesome photo shoot through Littlest Heroes!




June 2009 - Peanut and I were lucky enough to attend the 2nd Annual Convention for Children with Microcephaly! This was an absolutely amazing experience. I wish all these families could live in one little city so we could all be friends. It was truly incredible. We were able to meet Schuyler, whose dad writes about Fighting Monsters with Rubber Swords!




School was over, summer began, and with it came the first of many pool parties at friends' houses. My Monkey boy turned 9 the end of June. Happy birthday!




July 2009 - This was a busy month. Peanut started it off by getting a virus that made her vomit past her fundoplication and become dehydrated. We spent a few days in the hospital getting her back to baseline.



During this time, we had tickets for the circus! Monkey and I went while Daddy spent some time in the hospital with Peanut. It was a lot of fun! After she was released from the hospital, my Monkey and I went to Disneyland for the first time since he was teeny. He LOVED it, and we got our first annual passes.




August 2009 - Peanut had to be admitted overnight for an MRI of her spinal cord. They were looking for a tethered cord, syrinx, or chiari malformation. The MRI came back normal thank goodness. She and I had to right through the hallways between the operating rooms to get to the pre-op place, so we had to gown up! Check out that awesome snuggly blanket from Lacey at Jaxson's Blankies!




August also brought my sister's wedding! She got married in the courthouse and then had a reception afterwards. The downside to August was the start of Peanut's epilepsy. On the 28th she had a massive and long-lasting grand mal seizure. A trip via ambulance to the ER brought us the epilepsy diagnosis and started us on the anti-epileptic drug journey.




September 2009 - This was a rough month, as Peanut had her Mitrofanoff surgery. It was the hardest recovery she has had from any of her surgeries. Months later I can truly say it was the best thing we did. It has made life so much easier!





September was also the first day back to school! Monkey entered 4th grade, and Peanut entered 1st. Us moms were thrilled for summer to be over, and ready for a mimosa breakfast at the pier!! :)





September was a busy month. Peanut had a sedated EEG, which showed lots of seizure activity.



October 2009 - The beginning of this month was rocky, as Peanut was still healing from her Mitrofanoff surgery. She had a leg bag for a long time, waiting for the Mitrofanoff to heal. Then came learning to catheterize through it. As I said, it was tough but it was worth it.




The month improved tons, as Peanut turned SIX in the middle of October!! :) Following that was Halloween, which is always fun.






November 2009 - We had Peanut's belated birthday party. Due to the Mitrofanoff the end of September, we decided to postpone her celebrations until she was feeling better.



In November, Peanut had another trip to the hospital for an MRI. This one was of her brain, because the EEG showed that all her seizures are starting from one specific spot. The neurologist wanted to be sure that there was nothing weird there. The MRI showed no cause for her seizures, leading to the idiopathic epilepsy diagnosis. Shortly after this hospital stay, we had a trip to the ER due to an allergic reaction to Lamictal.







December 2009 - Started with a bang when our Boston Terrier decided to fight with our Manchester Terrier. The resulting head wound caused an abcess which had to be surgically cleaned, and she came home with drains in her head. Ick!



Christmas came quickly, and then our 11th wedding anniversary on New Year's Eve.





Welcome to 2010!!! I hope it's a healthy, happy, and wonderful year for all our friends. I hope for less hospital stays, less ER trips, and many great memories!