Wordless (Green) Wednesday

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. :)

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! :)

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.

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!