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.

A possible discharge

FINALLY!

Riley had a great day yesterday, even though she had surgery. She is such a little trooper.

You know she has rounded that "corner" when she woke up in recovery and asked for " chips". No vomitting either. She even had soft tacos for dinner. Thank the lord that it all stayed down too. I was starting to think that I was going to have to push the red nurse button and RUN if that was all to come back up again! :-)

Dr. F came in last night and tried to get Riley to have playdate with his 6 yr old son. Riley wanted nothing to do with it. Maybe it had something to do with the sponge? LOL!
Anyways.... he mentioned that there is possiblity that she'd get dischared to the RMDH. That way she'll have 2 days to be out of the hospital, but yet, if she had an issue, we could come back. Riley is so excited about it.

So, that's the big news around here.

NOTE ~ the neuro team dropped by for rounds just now and GUESS WHAT? We're being discharged! Later, at the RMDH, I will email our phone number .



I'll post again later......

It's out

Ok, I am in recovery with Riley and she is doing well. She actually "looks" worse than the chiari surgery. She has got a gauze wrap all around her head........looks more like the cranio surgery.

I saw the doc, and he showed me the the 4 x 8 sponge that they removed. No lie, it was the size of my hand!!! He did apologize, and he feels bad. This is a first for him .
Everyone can not believe that this happend to him. We know he is such a good doctor, it just stinks someone on his team dropped the ball!

We maybe here a bit longer. They will not let her go home if she is still vomitting. So, Thursday may come and go, and we could still be here. We'll see.

Surgery # 2

***Note: I am going to do my best to behave when writing this entry.
If I wrote what I truely felt, I do think I would be kicked off of blogger for LIFE!

Riley got up this morning at 6am and was very cranky. I think it hit her. We discussed last night what was to come this morning. I figured she would be wondering when they can to draw blood from her. She was a very sad girl from the time they came to get her at 7a until the time she left my arms at the "red line". She was so scared, her gun drop tears were flowing, she did not want to go. Surgery should only take 1 hour, but I probably won't get to see her for 1.5 hours.


NOBODY said, "were so sorry for this, what can we do to help you? NOTHING.

It Sucks!

NOTE: The OR just called and they had retrieved the item and are now closing her up.

So much for the good day

I feel so bad for Riley, she was having such a great day and then.....the vomitting monster creeped back up again and bit her hard.

I don't know how we would have been relased......good gravy!

It's a yucky rainy day here, a good day to stay in bed....and that's what we are doing. And, we've been watching Barbie movies!

I sure hope she turns the corner soon. I can't stand to see her sad.

Update

Ok, sorry I haven't been so great with the updates the las 24 hours - she has been very busy with visitors and projects. Leigh, Matt finally got things planted!

Riley has been doing FANTASTIC!!!! She's been up, moving around, visiting with her "fan club" that came yesterday, sleeping on her belly.....you name it, she's been doing it.

Today, we were supposed to be discharged from the hospital, but because of the "mistake", we will probably be here until later Tuesday afternoon.

Her vomiting has gotten less and less everyday. That always help the recovery time - ya know, when you don't feel like dung!

I do believe her appetite is also back. She has been wanting to eat everything under the SUN! I can't keep up! :-)

For tomorrow, surgery will be at 7:30 and last 1.5 hours from start to finish.
I will be speaking with a patient advocate this morning and a social worker to figure things out. Thanks all of you for your input.

I will post again this afternoon - with pictures.

update

Hi.
Riley has had a busy day. A TON of company came to visit including Keegan, Nana and Papa. It was a fun day, but she is so wiped out. It's amazing how a little company can do that to someone.
She is doing well. Moving more and more each day. She is such a trooper!!!

Pictures 48 hours after

Update pictures... Riley took a big step today and wanted to go play in the playroom. SHE WAS GREAT!

Riley's first time standing.

Kind of like after your first c-section. :-)

Eating applesauce - that later came back up.

In the wagon - off to the playroom

Ummm - popsicle


playing doctor

The big ouch!

Painting

Barbie house

Phone

I know some of you have tried to call. We are having issues with the phone. It doesn't ring in our room. Techs will hopefully be here soon.

Keep trying.

xray results

All I can do is giggle inside because seriously, this crap can only happen to us!

Are you ready for this? There is a foriegn object btwn her skull and skin. This means, we are not going back to the RMDH this weekend. She will be back in the OR at 7:30 Monday morning.

They will not reopen, they will make another slit above and retreave this object. They told us they didn't want to have to shave anymore hair, but it is what has to be done.

I am about ready to fall off. Not sure how much more I can handle. I don't know if I should even tell her about this. I just breaks my heart. She should be doing well from the first surgery by Monday and now have to go back in??? I don't know.

If anyone has any spare SANITY, we could really use it!!!!

UGH...

No results yet......Sorry!

Update

Riley is getting ready to go to xray for the lump on the back of her head. The lump is where they removed skin from the skull to use as graph matterial to repair the hole in the dura.

Hopefully it is nothing, but they want to be safe than sorry.

I will post after we get the results.

"The back of my head is feeling better!?!?"

Really Riley? Are you sure? Balloons from Jacob, Tyler, and Haley
Valentine's bag hanging on her door for goodies from the staff.

We will be in the ICU again tonight. Not because she needs to be, but because all the neurosurgery beds on the regular floor are occupied.

For you that have my number, please don't hesitate to call. Matt and I could use some other contact.

Pictures

Happy Valentine's day.

Riley's journey thus far.

Gotta love winter Chicago traffic

A view from the sunroof

Riley playing in the playroom

Riley and Zoe

Holding strong in pre op - Spinoza sporting her hat!

Right out of surgery
24 hours later
BIG ouch!

"I'm ok"

Hi~

Thanks Moll for the update last night. I knew I couldn't get to a computer, and I couldn't leave ya'll hangin' in suspence.

Ok, here is the run down from surgery yesterday (now that my brain is more clear).
Matt and I sat with Riley in Pre - op until 12:30. She didn't say a peep the entire time we were in there. Tracy, the child life specialist came and gave Riley a "shadow" doll who was all dressed in scrubs. Tracy talked to her about what was going to be happening and practiced it on the doll. Riley also got to pick what flavor smell she wanted in her "happy" gas mask.

We then got her dressed into her gown and that's when the tears started. The staff offered me to carry her into the OR. So, I got my pretty little scrubs on, carried her into the OR, and that's when her eyes just about popped out of her head and the tears started to flow. They quickly put the "happy" mask on and she was out in seconds.

Riley came out of surgery at 5:45 and went right to the PICU. She was able to open her eye very slightly once or twice and even asked for me.

A few time we had asked her how she was doing. Most of the time she would nod, but one time she said, "I'm ok".

Dr. Frim come in and gave us his perspective of how the surgery went.
This is where Molly got a bit lost. I know, it's the pregnancy brain goin' on. It's ok!

Riley's left cerebral tonsil was MUCH bigger than her right. It was almost to the point of cutting off the cerebral spinal fluid (csp). Once he shrunk that tonsil down, he was able to see much better of what was going on. He also cleared out some debris and he said the "traffic jam" was relased, and the csf went back to normal. They removed bone from the base of her skull and from the C1 vertabre.

They seem to think we should see a big improvement in her life.

There is one troublesome spot that they are concerned about. Riley has a bump on the back of her head from where they took the graph matterial. They seem to think there is a blood clot forming. They will watch it today, and decided either later on tonight or tomorrow what will need to be done, if anything. It scares the bagibbers out of me. I am trying not to jump to anything until I know fully what the situation is.

She has been a trooper. She's done everything that they have asked of her.
Her pain level is pretty high, but they are keeping it under control with morphine, valium, and zofran for the nausea.

There is no rush to place her on a regular floor, so she may stay inthe PICU until tomorrow. We'll see how her day goes.

We ordered breakfast, and will try to get her sitting up in a chair aswell.

I will post again later with more updates.

Again, thanks for all the thoughts and prayers.

Update, 9pm

Hi all, Molly here.

I spoke with Cindy a little bit ago and she asked that I update her blog for her, since she would be unable to access a computer for the rest of the evening.

Riley came out of the surgery okay, around 5:45pm. As of 7pm, she was still very much "under" with her medications, though she did ask for her Mommy once.

Cindy said she seemed to be gagging, as if from nausea, so she was given Zofran to help with that. She's currently in the ICU and should probably be there for the next day or two, depending on how everything goes.

I told Cindy that she could fill you all in on the technical details tomorrow, since her explanation of what they did to Riley's tonsils had me asking why they didn't just remove them altogether. Oopsie, not throat tonsils.

Here's hoping for a good night for Riley, Cindy and Matt.

Update # 2 - 3:30

Just spoke with the nurse in the OR and she said everything is going as planned. They are about half way through. I guess it's taking a little bit longer then thought? Not sure if that is a good or not.

Well, Matt and I are hanging in there. Bored as can be sitting and waiting. There is another younger couple in the waiting room, and we over head them and the surgeon talking, and Matt and I think their child has cranio. How weird.

We'll kee you posted.

Update # 1 -1:30

Riley had a busy morning. Everything from playing with mud soap to having her blood drawn. She even got to play in the playroom and attend for a short bit, pet therapy. She loved ZOE - the dog.

They took her back to pre op at 11am, talked to everyone and their brother, got her dressed up in her pretty little gown, which she cared less for, and then it was time to go into the OR. She had been a pretty brave little girl up until it was time to get dressed in her gown and off to the OR. I got dressed up in my scrubs and carried her into the OR. At that point she was bawling.
They got the "happy gas" mask on and within seconds she was asleep.

Dr. Frim called us at 1:30p to let us know she was asleep and that they got all the IV's in smoothly. He also mentioned it would take 3 - 3.5 hours.

We should be getting another possible update around 3 - 3:30.

Thanks for everyone thoughts and prayers.

The night before the big day

Thus far, everyone is still doing as best as can be expected.
We are settled into the RMDH and are somewhat organized for tomorrow morning.

Tonight, we made our way to downtown Chicago for some good eats. We took Riley to her first ever Hard Rock Cafe. It was fun.
It is now 10:30 and she is snuggled in tight.

Tomorrow, we will check in at 9:30a for her tour of the hospital, and she will be admitted at 10:30a. I believe she will go into surgery at noon. They told me today that it is scheduled for 4 hours.

She has a bit of a cough and it's making me very nervous.

As she goes in, I will hunt down hospital computer and try to do updates.

I will keep you posted.

good night.

The night before, the night before.

Things are finally falling into place around here as we get ready for tomorrows departure. Suitcases are packed, Mary Poppin style bags are busting at the seams (Thanks Leigh!), and all 4 kids are tucked into bed.

I can't believe that we are less than 48 hours out. I can't wait for Wed. night to get here. Surgery will be complete, she'll be snuggled up in her bed in the PICU, and we'll have finally turned that corner. She will have become a ZIPPER HEAD! In the chiari world, that's a good thing. I just hope that recovery goes smooth and easily.

On a different note, Nana and Papa have been spoiling R and K BIG time! Sunday night they surprised the kids with a night out at the PAC to see Mama Mia. Riley is a HUGE ABBA fan! They had a great time.
Today, Nana took them the Monkey Joe's (and indoor play area) and then to Chucky Cheese. It's been a good distraction for Riley, and Keegan too!

So, on that note.... I am going to try and get my last good night sleep in before I will be calling a plastic hospital couch " bed".

Good night.

A great start to a shitty day

Bad things come in 3, right? Oh, I got more more thing comin' then!

First, Matt wakes up, gets in the shower, get's out, and the toilet is leaking - there is water everywhere. GREAT! So, we are now 1 potty short! Not so good since the first floor one will be out of comission in the up coming week!

Next, Keegan and I are running late, we jump in the car........crap - it's got a dead battery.
So, it's -10 without the windshield, we bundle up and try to get him there before snack time. God forbid we miss snack time!

WHAT NEXT!

Papa, Carson, and I are headed to CHW today to have her stint removed. Hopefully we'll get through all of that without a hitch.

Here's hoping that bad things only come in 2's!

Blog a "girlfriend" for 30 days.

I have decided to give myself something to look foward to once Riley's ordeal is all done and over with. So, what better way than to blog a girlfriend for 30 days. Maybe not 30 days, but within a month. So, If you are one of my girlfriends, and you stalk me, and DON'T want me to write about us, please let me know.
Otherwise......watch for fun posts to come!

A little somthing to help me through

Click Here!
Josh Groban - You Raise Me Up

Each day, a day closer

It finally hit me today that surgery is really happening. It's not make believe, I'm not dreaming.....although I wish I were.
Today we took our first step in getting prepare to leave. Jake - our year old black lab is now with his friend "bella" for the next week or so. A family friend of ours offered to take Jake for us so it would be one less thing we would have to worry about. Especially my parents who will be taking care of the other 3. It was kind of sad to see him go, but we know it's for the better. He'll be much happier with his 5 yr old girlfriend. :-)
Tomorrow, I will start packing suitcases, and getting all of Riley's things together.
Monday, Carson and I will be headed down to CHW to have the stint removed from her right eye.
It sure doesn't leave me with a whole ton of preping time left. AAHHHH!

Good night!

Birth to 3 saves the day!

First and foremost, after reading everyone's comments on wether to blog Riley's recovery or set up a caringbridge page, I have decided to post her recovery here. So, no need to look any further for updates. They will be right here at your finger tips....play by play.

Next - Birth to 3 saved the day yesterday by bringing Riley a NEW Spinoza bear! This time, we will leave him in his box until it is time to leave on Tuesday. We know he works, and he will be safe and sound until we REALLY need him! Thanks "J".

Other than that...I don't have much else to blog, except that in my "spare time" I beaded 20 little bracelets for Riley's classmates for Valentine's day (her request), unpacked the first floor bathroom so it's ready for demolishion on the 18th, and total reconstruction on the 19th (so it's done and ready for our return on the 23rd?) done 30,000,000 loads of laundry, picked up the house a zillion times, started to pack Riley and I, got Keegan all organized for the time that we'll be gone.....and changed the pet fish and hermit crabs house.

Now, it's time to go eat some BON BON'S!

YAH RIGHT!

STOP this rollercoaster, I NEED to get off!

Oh boy, where do I start.

I am BEAT, exhusted, emotionally and physically run down, and I want to get off this stupid rollercoster called LIFE!

The other day I blogged about how Riley wanted nothing to do with the new Spinoza bear she recieved as a gift. Well, after some time of dressing it up, and playing with it, she finally made the big move to have the music on at night. Now... she doesn't want to ever be away from it. She even asked if we could take it to the grocery store the other day.

Well, tonight....things have taken a turn for the worst I am afraid. Spinoza isn't wanting to play anymore. The cassette player may be shot, already. Riley cried and cried tonight when we could not get him to work. I am fearing the worst here. She has now become BF with the bear and it's broke, I think.

How is this happening? Can't this poor girl catch a friggin' break?

I honestly feel like I am carrying my emotions for the both of us. I can't bearly keep my eyes open anymore......how am I going to have the strength to pull her through too?

Tomorrow is her last day of school until we both go back together. I am dreading it. Hopefully she will have a great day, and it will all end on a good note.

Good night.

A turn for the better and to blog or not to blog

The other night, Riley ASKED to have the Spinoza bear sleep with her - with the music ON! I was very surprised. So we agreed, and he has slept with her, with the music on for the last couple nights! YEA!

Here is a picture of Riley and her new BFF.

Here are some other recent pictures of Riley.

Riley's bracelets

Uncle Mike wearing his new bracelet!

"Uncle" Joe and Riley playing with the Packer noodles.

Ok, now that we have the fun stuff out of the way, I have another issue I would like some input on. I have been debating about not blogging Riley's surgery. I have been contemplating on starting a Caringbridge page, just like I did for the the other 2 kiddos.

Now, If I go the caringbrige route, I would only post on my blog maybe twice just with updates, and do the "play by play" over there. That way, if people don't really want to hear all the "gross" stuff, they can just check here for the progress reports. The other thing is too, I would only invite close friends and family to the caringbridge site.

If people don't mind reading the "play by play" stuff, then I will post here.

Please let me know what your thoughts are.

For you that haven't commented before, commenting is a piece of cake. At the bottom of my post, there is a link that tells you how many comments there are. Click it, and it will take you to the comment section. Write your comment, if you are not a blogger, click anonymous, and make sure you sign your name in your comment so I know who you are.

Thanks!

A change of pace

I haven't done a "photo" blog in awhile so thought this might be a good time.

I will be back tomorrow to post another entry. Enjoy!

Good night!