The Fiona and Liam Chronicles

Liam received a hat for Christmas, made by my mother, that he refused to wear on even the coldest days.  However, come April or May he found the hat again and began wearing it every single day.  When it was 90 degrees outside, you would find him with sweat dripping down his face, hat on.  I recently shot some video of Liam and Kevin doing laundry and, as soon as I find the cord to transfer it on to my computer, it will be posted.  In the meantime the two concepts, Liam’s hat and Liam’s laundry help have combined into this lovely Kenmore ad-enjoy.

Well the summer has flown by and the last time I posted I was just recovering from being in bed for a week…now I am on day six of my second round of “down for the count” this season. This time due to some wisdom teeth removal and consequential complications. Enough of that though, on to our mighty duo! The kiddos have been growing like weeds and learning so many cool new things, two of which are highlighted in today’s video segment. Those skills, you may ask? Bubble blowing and chasing. It has been awesome to watch the two play together. As they each grow they seem to have developed more ways to relate to each other and wrestling and chasing seem to be the favorites. Liam is amazing with Fiona. He is intuitive and, although he can still get upset by her grabbing him at times, he seems to find a lot of pleasure in her silliness. Daddy and I love watching the two of them and hope you will enjoy this little slice of their night tonight.

I went to Disneyland for a conference and was sent home with a gift for Fiona from one of our dearest friends, Amber. Here are the cutest Winnie the Pooh ears you have ever seen!

Nana with ears

Close up Fi with Pooh Ears

Sorry we have gotten so behind on the updates…by we I mean me, because Daddy is WAY too busy taking care of everyone to blog.  Mama has been down for the count, flat on her back sick for almost a week.  Narrowly recovering in time to start her summer internship yesterday (which is oh so fabulous by the by).  Unfortunately now our heroes have faced some setbacks.  Liam had a fever yesterday and Fi an ear infection so they were home with Super Daddy all day. 

As a general thing the mightiest of children are doing great!  Liam is working on more words every single day and (Amber, you had better appreciate this) has started using a wand.  Although I believe that it is more Abby-Cadabby from Sesame Street inspired than Harry Potter, but a super hero has to start somewhere if he is to save the world from evil.  I was laid up and Mr. Liam comes into the bedroom and starts going through a box of random things Daddy had collected while trying to clean.  He pulls out a little white adapter cord for my Mac and says, in a most wonderfully surprised manner, “My wand!”  How I wish I had that first exclamation on tape-the joy in his voice as if he had been searching for it all of his long two years of life.

I also wanted to give a shout out to two amazing people one being Grandma–rock on with your brilliant Sesame Street Live tickets for Liam!!!  He loved the show so much and kept trying to rush the stage because he was sure that his friends couldn’t see him when he was in his seat.  That was the greatest idea in the world.  And also a huge thank you to Nancy Fortney for all of the cool Sesame Street Live gifts—Liam got to relive the whole show right there in the living room when they arrived.  How unexpected and generous.  Liam wore his t-shirt to school the next day and told anyone who would listen all of the character’s names.

Love to all from Liam, Sesame Street rocks and so do all of you!

So I have a dozen or so blogs I subscribe to and one of them is written by a mother, Lisa Leonard, whose son, David, has a genetic condition called CdLS. I love her candor and obvious love for both of her children. With all of Fiona’s challenges, it is encouraging to see a mother who is so together. She inspires me to take more pictures and keep writing about my family. Read more about her family and CdLS at it’s the little things.

Well she is an amazing jewelry artist and there is another parenting blog, Simple Mom, that is giving away one of her custom necklaces. Everyone should enter, her work is beautiful!

So the last time Fiona had to get an EEG it took two tries and 10 hours.  This time it went down like this…

Lantz stayed up with Fi and I took her to the hospital.  She was in a tank top and shorts with no pacifier and, man, was she not happy with me!  Once we got there they got us into a room pretty quick and Joy, the nurse from Greenwood, said Fi could have her bink.  I gave it to her and put her in her flannel monkey pajamas and that little girl fell ASLEEP!  She was perfect.  Absolutely perfect.  I was so very proud of her.

Instead of being done at 4:30 as planned, Fiona got us out of South Carolina and back to Charlotte before five.  The hotel pool was under construction (thanks for not telling us that Hotwire) but Miss Nana had a nice long hot bath and then we hung out.  A little room service and National Treasure 2 made it a nice relaxing evening.  I am coming down with a bit of a cold, so I wasn’t too excited for the flight today.  However, Fiona slept this time too and so I got to nod off without ignoring her needs.

So Uncle Lantz was awesome, Fiona was awesome, the staff at Greenwood was awesome, and I thank them all.

So Fiona was a champ today, a trooper, a wiz, a with it kind of gal.

First thing this morning, Lantz and I get her up and dressed and she and I head off to the Greenwood Genetic Clinic. I got turned around a bit, I thought I would remember better since I was here last year, but alas I made us 10 minutes late. Everyone had big hellos for Fi and there were more than a few comments on how tall she is now and how much of a little girl, not a baby anymore. She gets weighed (37 lbs even) and measured (40 inches) and a few other little checks.

Then for the worrisome part-the blood draws. She always does so very well with this, but I don’t. Also I always think “this is the time she won’t be okay, this is the time that she will be upset and I won’t be able to really help her.” Only she was amazing! She actually fell asleep while they were taking blood. Seriously, fell asleep. What made it hilarious was that not only did it take longer because, since she was sleeping, her heart rate slowed, but she actually started snoring. Oh, Nana

Then I fed her some breakfast. I had some interview questions to do with Dr. Skinner and Fiona was observed by Dr. Horowitz. She also did some psychiatric tests before and after lunch. When we did have our lunch break, Uncle Lantz joined us at O’Charlie’s for some mini corn dogs, fruit medley, milk, and rolls (Fiona), chicken strips and fries (me), and salmon with rice and sweet potato fries (Lantz). We dropped Uncle off and went back to the clinic. Done by 4:15 and back at the hotel for Fi to get some rest. The idea was to let her sleep so that she can stay up all night for her EEG. The kid that hardly sleeps needs to be sleep deprived.

So, although I wish we were making Oreo cake or bloomers (how cute are these? Fiona would rock out in them) I am thankful to have Lantz here to stay up with Fiona while I get some sleep.

Tomorrow it is EEG, tests, lunch (check out of the hotel and pick up Lantz), back for the last of the tests, say goodbye to Greenwood (and Fran, Joy, and Georgia as well as Dr. Skinner and Dr. Horowitz), and drive us all back to North Carolina. We’ll be in the hotel there tomorrow night and then fly back to Chicago on Thursday.

Love to all!

Here’s the skinny…Fiona has been participating in  a clinical trial for the last 14 months.  The way I understand it, it is funded by a few sources the major one being the Angelman Syndrome Foundation (thank you again to all who donated to the walk or supported the awareness efforts).  Well, in order for Fiona to participate, we came down to South Carolina, Greenwood specifically, last March and here we (meaning Fiona, myself, and Uncle Lantz) are again.  Yesterday Fiona and I arrived in Chicago (a la Blue Thunder) and hung out with Lantz and Adrienne.  Lantz made chicken and rice and helped get Fiona to go to sleep.

Not to rant on the subject, but why is it that Fiona is always so sneaky with her sleeping?  The way Kevin and I talk about our exhaustion, most people probably assume Fi never sleeps.  However, let someone else have a crack at it-for example the last time the kids spent the night at my parents’ house-and she sleeps like kids typically do.  Okay, enough on that.

So this morning we woke up way WAY early and got ready.  Adrienne was a sweetheart and dropped us off at O’Hare.  The flight was great.  Fiona slept.  No one ever congratulates you on good kid behavior on a plane by the by.  You only get evil glares if your kid makes a peep.  So the perfect Princess Fi continued to be awesome on the 2 1/2 hour drive from Charlotte, NC to Greenwood, SC  in the new hottness The White Crown Vic.

Our hotel-stellar.  The enormous amounts of Curbside to Go from Applebees-fabulous.  The fact that Nana and I both got a nap in-priceless.

She has to fast tonight after midnight.  Blood draws, paperwork, and psychiatric work ups tomorrow.  Then tomorrow night NO SLEEP!  She has a sleep deprived EEG on Wednesday morning.

I’ll keep you updated.

Fiona wanted to thank everyone who walked in her honor. She had representatives in Des Moines, Chicago, Denver, and D.C. as well as even more walking virtually. So many people love her and our whole family loves all of Fiona’s Family. I just got a great email update about the national efforts–over 5,000 participants and $850,000 raised so far this year. AMAZING!

I was so honored to have so many former students come out, you were there her whole life so it was more than fitting that you be recognized as family members. Also, a big thanks to Amber, Steve, and Jill who drove in from Iowa City, too too kind. I think every last one of you is fabulous.

Amy took awesome pictures, here are some of the highlights:

Super hero children give super hero amounts of love on days like this.  There have been many hugs, flying trips through the living room, kisses, and smiles.  All of these things, even the tears, make being a mother amazing. I hope every mother out there is lucky enough to spend some time with her own super heroes today.