Riley update

Just a little update on Miss Riley.

Things are going well. (Should I stop there? No, because you KNOW our life is not that easy.)

Riley has been complaining about an area on the left side of her head - more so by her left ear. She has actually been complaining about it since we got home, but brushed it off as just a headache, which is normal considering what she's been through. Yesterday, I call the NS resident on call and she NEVER called back. I can not express myself about that here or I may get kicked off blogger. So, I went for the next best option. I made an appointment with our pediatrician. Annika was not sure what was causing her pain, and because of the sponge issue, she wanted to make sure that there were no other pieces of foreign body in there, or worse, an infection. So, she ordered a CT scan. Riley and I went over to the hospital, had the first CT w/o contrast - thought they saw something, then had to traumatise the poor girl again by putting in an IV for the contrast for the 2ND CT. Honestly, she saw the IV coming and said, "I don't want another surgery. If somethings in there, just leave it". How sad is that?

Anyhow, The scans were normal - they didn't see anything fishy.

So, this morning she was still complaining of the soreness on the left side of her head. I finally called the NS back and got him directly! I told him what was going on and he said that it's from the vice grip they used (3 pins on each side of her holding her head still) during surgery. The pin may have punctured a blood vessel in the muscle and is now causing a "charlie horse" type of effect in her head. He told us that by now kids aren't complaining about it. So, if she still complaining by the middle of next week, we will have to take her back down.

How is that for Friday news??

I think I'll go back and stick with - Things are going well.

Edited~ I have decided now that the major surgery is over, to protect my behind, I am going to be starting a caringbridge page for Riley. I will post her caringbridge site here when I have it complete. Please check out our other chiari friends (we met while at the RMDH) CB site now linked on my link list.

NJ is going to having his first decompression surgery March 19th, and Nick had numerous surgeries. please keep them both in your prayers. Thanks.

Spare time?

A few of you have been asking, "Are you home relaxing now that the surgery is over"?

Well. No. The show must go on, even if I need toothpics to hold my eyelids open.

Here has been one of my most challenging projects. Carson and her "honeys" (unddies).



Oh, isn't potty training a joy?

# 2 - Molly

Oh boy, where to start with Molly.

Molly and I met about 4.5 years ago online - September 25, 2003 to be exact. We were both struggling with our weight and we both seeked out the Dr. Phil weight loss challenge. I had posted that I was from Wisconsin, and that I would be interested in partnering up with someone from the mid west. Molly emailed and wanted to know if I would be interested in partnering up with her. Here is our very first email.


Hi Cindy,
I read your message on the Dr. Phil Board, and wondered if you were still looking for someone to be an email buddy. My name is Molly, I'm 25 and a stay at home mom, and I have an 11 month old (soon to be 1 - sniff sniff). I have about ? pounds to lose and I'm just getting started. Please email me back if you are interested.

Molly :-)



That email was the start to our very crazy, very fun relationship. Except - we never even did the Dr. Phil challenge!

Molly and I have been through our first kids toddler stages together, her 1 to my 2. And then we both struggled to get pregnant again for the 2nd time. I had gone through fertility meds to get pregnant, and she had a bunch of test done as well. We talked almost everyday, wishing and hoping that one day our little pink lines would show.

April of 05, my pink lines showed up. I was so scared to tell Moll that I was pregnant because I knew she too wanted her pink lines. I finally broke down and told her the good news, knowing that she would be heartbroken, but really, she took the news well.

At that point, we also asked Molly and Kevin to be Carson's god parents. Molly was so excited.
Not 3 weeks later, Molly finally had her 2 little pink lines. We talked almost everyday about our pregnancies, how we were feeling, how hard it was this time around having other children at home, and so on and so forth. It was fun.

Now, as we speak, Molly is pregnant with her 3rd. I am so sad to not be participating with her, but I could not be happier for then! Here's to hoping it comes out healthy, and with pigtails!

I wish I saw Molly more because I consider her one of my best friends. Maybe one day, we'll live closer. Until then, we will see each other as often as we can, and our kids will continue to call each other "cousins".



This story could go on and on, but for now - I'll stop here.

Love ya Moll!

30 days of friends - # 1 ~ Kaci

A few days back, before surgery, I had posted that I was going to be doing 30 days of friends.

Well, today is Sunday and I thought today would be a great day to start. So here we go!

~ KACI ~

I am going to start with my friend Kaci. I thought it would be appropriate considering last weeks ordeal.

Kaci and I have a "different" relationship in that we have actually never met in person. But yet, I feel really close to her.

I met Kaci through the Craniosynostosis and Positional Plagiocephaly Support board when I was looking for information for Carson and Cooper almost 2 years ago.

Kaci has 2 children, 1 boy, and 1 girl, who both have been through surgeries for craniosynostosis, and the sugeries for chiari malformation. I do believe at one point she told me they have been through a total of 13 sugeries all together.

After awhile of emailing back and forth, Kaci offered to be our sponsor for the surgeries. She was my "go to" person when I needed to vent, or need a shoulder to cry on. She had all the answers I was always looking for.
Little did I know back then that she would end up being my mentor for 3 kids. She was also my go to person for Riley's Chiari surgery.

Kaci has been my lifesaver. I am not sure I would have gotten through 3 surgeries without her.

Thank you Kaci for all that you have done for me.

I promise, we will meet in person soon!

Pictures as promised

I know some of these are repeats, but thought I would send them from start to finish. I even added a surprise picture at the end!

Tuesday - Day before surgery. Lovely Chicago weather, and traffic

Wed. right out of surgery- PICU

Day 2 PICU

Standing for the first time

Day 3 - Playroom

Decompression area - Sponge still in. Can you see it?

Papa, Keegan and Riley

Back at the RMDH - Initials from 2nd surgery.

And the picture everyone has been waiting to see! THE FAMOUS SPONGE!

It's in a urine sample cup.

HOME!

YES, we are home!
I am exhusted, physically and emotionally drained, and I am sure it will take awhile to get back to normal. I promise to keep you posted on her progress. Thank you all for your thoughts and prayers during his trying time!

Friends

Hey everyone.....we are finally at the RMDH.

Last night was wonderful. Riley and I slept through the whole night for the first time since we started this journey.

Riley took and nice long bath last night. It must have felt good because she didn't want to get out.

At dinner last night we met up with 2 other Chiari friends. Kristen, and Michelle, both found me through my blog.
Michelle's (from Indiana) little guy, Gabe, is having a shunt replacement today with Dr. Frim, and Kristen's (Oklahoma) little guy is seeing Frim for the first time on Thursday, but is having his MRI and other stuff done today.
Sort of funny how we are all here at the same time.
We had a great time chatting, and the kids had a great time playing. Best wishes to both of them!!

Papa is coming down today, tomorrow we will see Frim for a post op appointment, and then we will be free to leave!!! Riley is really excited to get home. She has been talking about the 3 others, but mainly, Jake.

I am sorry I haven't gotten pictures posted lately.....Since Matt has been gone, I have been lost. I will do a HUGE picture post when I get home.