Susan Shaughnessy 1978-2008

It is with a very heavy heart that I post today.

Our very dear friend, Susan Shaughnessy, passed from this life on November 17, 2008. She died peacefully in her sleep surrounded by family and friends on Monday evening.

Funeral arrangements are currently being decided upon. Services will most likely be held at the end of this week in St. Louis, and we have been told that a memorial mass will be offered for Susan in Washington D.C. sometime in December.

Susan's family wishes to extend their thanks for all thoughts and prayers that have come their way in this time of need. Your outpouring of support and love is greatly appreciated.

We have a few photos from our wedding that we will be putting together tonight sometime, and hopefully we will have it up on our site tomorrow. Check back again later.

If anyone is ready for life eternal, it is Susan. God is getting quite the angel.

You will be missed, Susan.

Exciting news

As some of you know and for those of you that do not know yet, we are pleased to announce that we are expecting our 2nd child on March 2, 2009. Sorry for the delay, it's amazing how much attention Gillian takes away from informing people of important developments like this (yeah, that's right, I'm blaming it on an innocent little girl). We will post sonogram pictures just as soon as we can (hopefully tonight). But....no promises since it took us 4 months to post that Michelle is pregnant :)

Halloween Costume

No one saw this coming did they? Gillian was a dog for Halloween. Her very first trick-or-treating experience is captured on film below....Shaun and (Dr.) Lisa (note the shirt...) were first on our list. We also visited Jason and Sara, Margie and Dan, and Megan.

Pre-game photo opportunity with Mommy.
All fired up for candy!!!

Mom? Dad? Are you SURE this is gonna work?You tell me, who's more excited?

Pumpkin carving

In the happenings of last week, I fell a little behind in posting pictures, so here are some from our pumpkin carving endeavor. In the beginning Gillian didn't quite know what to think...then she decided she would help...
Uh, Gillian....why don't you pull the seeds out not put them back in.
Finally got it figured out but quite obviously Gillian thinks the inside of a pumpkin feels precisely the way that I do -- disgusting.

The latest on Susan

We received this email on Friday, so I apologize for the latency. Please continue to keep Susan in your prayers. The email...

Mr. and Mrs. Shaughnessy had a family meeting with two of Susan's doctors yesterday (a critical care doctor and a neurologist), who went over some more details about Susan's condition.

The doctors showed them the MRI and explained that there is extensive inflammation in the brain and the brain stem. The intravenous delivery of steroids will be discontinued after seven days, then steroids will be given in decreasing oral doses for two weeks.

Susan had another MRI late last night. The doctors did not see any increase in brain swelling. They did see some new areas of inflammation, but these could have appeared before the steroid treatment was initiated. She also started her second round of plasmaphoresis today and will receive her third round on Sunday.

Susan's brothers are now in town to visit.

One of Susan's doctors walked into her room and said she felt something special happening in the room, that she could feel God's presence and had gotten goosebumps when she walked in. The nurse accompanying her pointed out all the holy images friends have brought to keep in Susan's room. It turns out the doctor is Catholic and had offered her prayers for Susan today!

As you can tell by the email, all of the prayers and good vibes are making their way to Washington D.C. -- so keep it up!

Update on Susan's condition

As of late last night, here is the latest on Susan (so the "tomorrow" references below are actually occurring today sometime):

Today the doctor's started Susan on a second regimen to treat the ADEM (acute disseminated encephalomyelitis - the condition in which her immune system is attacking the brain and causing her symptoms).

The new treatment is plasmaphoresis/plasma exchange, which is a little bit like kidney dialysis for the blood. The blood is removed from the body, the red blood cells are removed and returned to the body, while the remaining fluid (plasma) which contains the antibodies attacking the brain is discarded and replaced with new plasma. Susan began one round of this treatment today and will receive four more treatments over the coming days.

Tomorrow Susan will undergo another MRI to determine whether the steroid treatment is having any effect on the inflammation.

Also, the results of her 24-hour EEG (electroencephalogram - monitoring of the brain waves) showed that she is not having any seizures. While she is still on the ventilator, her own breathing has gotten somewhat stronger.

Added prayers will never hurt, so please pass this along to any prayer chains you might have, or say a special intention as often as possible.

Thanks, and I will keep this blog updated as things change. If you are interested in putting a face with the name, Don has updated his blog with a picture of Susan.

Update on Susan - as of late yesterday

First of all, thank you all very much for your prayers. We received an email from one of Susan's roommates late yesterday afternoon, and I wanted to share with you. We have not heard much beyond what I have put in quotes below, but please keep praying.

I wanted to give everyone a short update on Susan as of this morning. Two of her doctors, a neurologist and an infectious disease specialist, spoke with her parents about her status. The tests for bacterial infection have come back negative. They currently believe that Susan did have a viral infection which is now gone but she is suffering from certain post-infection effects. In short, the doctors believe that Susan's body produced antibodies against a viral protein which happens to be similar to a protein produced by her brain. So her immune system is treating that protein as if it were viral, causing inflammation in the brain. She is currently receiving steroids to try and counteract these symptoms. The exact virus is yet unknown, the doctors are still waiting for those results.

Michelle's class made cards for Susan and her family yesterday and we are mailing those cards to Washington D.C. so that her family may read the words of encouragement. If you wish to send something, even just a note of prayer, contact me and I will give you the address to which you may send your items.

URGENT PRAYER REQUEST

We found out this morning that a dear friend of ours, Susan Shaughnessy is currently in a coma in Washington D.C. We would like to ask that you pray for her recovery and for her family. I have pasted some of the text from the email that Michelle received below. Some of you may recall that Susan was in our wedding. Her and her family have been close friends of the Youngmans for many, many, many years.

Please keep the Shaugnessy family in your prayers, especially Susan. The text from the email....

Dear friends of Susan,

I'm sorry to relay this news over e-mail for those of you who are hearing this for the first time. I am a housemate of Susan's. She is currently in the hospital and in need of your prayers.

She wasn't feeling well last week and had flu-like symptoms. This Sunday afternoon she was admitted to the hospital and is in the neuroscience intensive care unit in a coma. The cause of her illness is still unknown, she is undergoing a battery of tests. Since we don't know the cause there is yet to be a prognosis on her condition.

Her condition is serious and we need to pray for a miracle. Susan has a great love for Pope John Paul II and I would like to ask you to join in praying for his intercession. I've pasted a short prayer below.

O Blessed Trinity
We thank You for having graced the Church with Pope John Paul II and for allowing the tenderness of your Fatherly care, the glory of the cross of Christ, and the splendor of the Holy Spirit, to shine through him. Trusting fully in Your infinite mercy and in the maternal intercession of Mary, he has given us a living image of Jesus the Good Shepherd, and has shown us that holiness is the necessary measure of ordinary Christian life and is the way of achieving eternal communion with you. Grant us, by his intercession, and according to Your will, the graces we implore, hoping that he will soon be numbered among your saints. Amen

Please, please, please pass this along to whomever might be on your prayer lists, and I will update this blog as I know more.

Fight hard, Susan!

Very first fat lip

A couple weeks ago at the ballpark, Gillian was having a blast running around the picnic table while Mommy chased her. She took turn #3 a little too tight in her lap around the table and went mouth-first right into the bench. The light was a little poor, but you can see her swollen upper lip in the pic.

Playing at the park

As I mentioned in my previous post, playing at the park is now a favorite pasttime of ours. This shot opens with Gillian summoning up the courage to go down the slide, then engaging in a rousing game of peek-a-boo with Mommy, after which she hurtles herself down the slide again. After that, you'll even get to hear one of her patented phrases as she doles out a "hi" to a passing car.

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Catching up

Since I have not updated with pictures or videos in quite some time, I decided to put together a bunch of our favorites from this summer and early fall. As you will see in the video, we've done lots of fun things. You'll see plenty of playing at the park (one of our new favorite hangouts), some shots from the ballpark, pics from visits with both sets of Grandparents...also watch closely for Mommy and Gillian watching fireworks, along with Daddy and Gillian at Sara and Jason's wedding in the Rockies....

Learning to pray...

Michelle and I have said nighttime prayers with Gillian since we brought her home from the hospital. More recently, we have begun sitting down in her room before she goes to bed and making it a point to fold our hands and say our prayers. We had noticed that she was starting to get more into the bedtime ritual tonight, so we grabbed the camera and were able to snap these 2 great pictures of her folding her hands.

Milestones...

I hadn't put much about what Gillian's up to these days, so I thought I would post again today and see if I can recap just a little bit of what she's been doing...

As anyone knows who has seen her lately, her favorite word is puppy. To her, everything that walks, breathes, sniffs, and pretty much exists, is a puppy. Hi and buh-bye are still pretty common words that she uses, but they've taken a backseat to puppy. She also uses the word baby rather frequently when pointing out that there is a small person nearby. She has a few other words that she uses, but those are her favorites right now....

A couple weeks ago, Gillian took her first unassisted steps, and is growing more independent by the day. Just yesterday, she took off for the middle of the floor without something to walk to, which was a first.

She loves to give kisses, and usually does so fairly indiscriminately. All you have to do is ask!! Right now, her favorite food is bananas. She must be Michelle's daughter. All of that late-night cantaloupe during the pregnancy must have morphed into an affinity for bananas!

Happy 1st birthday Gillian!!

Hard to believe, but Gillian Grace turned 1 last Saturday. We hosted a party with all of our closest friends Saturday to celebrate. A mid-morning thunderstorm nearly derailed our grilling plans, but we had a few people come through in the clutch to save the day. Eric (neighbor) loaned us his sun tent to put on the deck in the event that it would be 90 and hot. Well, that didn't exactly happen, as the skies opened up around 9:30 before the 11 o'clock party. As it started to rain, we were able to get the tent up and functional on the deck, so I could still cook lunch for everyone.

The party was just getting started....after lunch, Gillian had a great big cupcake and daintily picked at the icing (as any polite little girl should), before sticking her icing-covered hand into her hair. Expectedly, she was not too terribly interested in the cake portion of the cupcake...but moreso in the delicious frosting.

Thank you so much to everyone who attended, and for those that weren't able to join us, thanks for the warm thoughts. The first year of Gillian's life has been incredible, and Michelle and I continually count our blessings for all of our friends and family, and the impact you have had on our family.

Aunt Abby was able to get some great pictures of Gillian on Saturday, so I've put in 2 of my favorites. There are plenty more, but once again, I'm working on getting them all put together.

What's going on with us...

Over the weekend of the 4th of July, we hopped in the car and drove to Tulsa to spend time with Michelle's parents who (on July 6th) celebrated 40 years of marriage. After spending a couple days in Tulsa, we drove an hour and a half east to Ozark, Arkansas for my cousin Brad's wedding. He married Kendra Nelson on the 4th of July. Congratulations to them as well. I have pictures, but I'm working on organizing them, so I will get them up when I get a chance (seems like I always have something like that to say...) Every night after work last week, we worked on the deck so it would be done for Gillian's first birthday (I know, can you believe it??). When it came right down to it, I needed to take Thursday and Friday off of work so that I could get everything all finished up. In the end, it was all worth it, because I was able to get the deck all done before the big party.

I have pictures of the deck as well, but I'm saving the suspense of those pictures for later. It'll be worth the wait, I promise.

Deck progress

In addition to Michelle's birthday, this weekend we starting working on the deck. Saturday morning, Nana and Pops came up to help out. They were able to stay through Sunday evening, so I had Pops' help throughout most of the weekend.

On Saturday we set another couple posts in the ground and deconstructed the existing deck. We also attached the anchor board to the house. Sunday we made some real progress and were able to get several floor joists in. I took some before and after pictures. Here they are....

I keep forgetting, but I'll try to get pictures of our completed fence project too. We were able to get that done so the dogs can be outside most of the time. So far it's worked out perfectly.

Before (Saturday morning)...(hey Dad)
Mid-project...(last night)

Happy Birthday Michelle!

Michelle's birthday was Saturday, so we were able to get together with some friends and celebrate Michelle's milestone birthday that actually occurred last year. Since she was pregnant last year on her birthday we postponed the celebration until this year.

We all made it out to Matsu (sushi bar in Westport), where we all got to try new things :). Michelle tried sashimi for the first time. She was a trooper and knocked it out pretty easily, though I'm not too sure she'll ever eat it again. She also tried onagi (eel). Interesting....

After that, we headed to Ernie Biggs, which is a dueling piano bar in Westport. It was a great time. The highlight of the night for me was when the pianist played some song from the Little Mermaid and Michelle belted out every last lyric (spot on, I might add), complete with hand motions. Simply phenomenal. A quick search of google tells me that the song I'm referencing is called Part of your World.

Us at the sushi bar...

Michelle and the sashimi....

Kool and the Gang reprise

I know I promised a dancing video of Gillian, so I have delivered. It was not the original that I had in mind but this one was made last night after she got out of her pool. Mommy was working in the yard and Daddy working on the deck when we caught her having her own personal dance party on the blanket. If you watch closely you can see her pick up her stuffed puppy dog and hug him midway through. Watch out Ginger Rogers.

In case you missed it...

I haven't given an update on Gillian lately and what she is up to now....so that's what today is going to be about. She is not walking yet, though we think she is very close. She will walk all over the place as long as we're there to steady her :). Her vocabulary is growing as well. She now (somewhat distinctly) says puppy and baby, in addition to her now famous "hi there" and "buh-bye". Occasionally when she is upset, she'll throw in a Mama or Dada, but usually only then.

Since the Enos family visited, we've also had Catherine (Michelle's youngest sister) visit for a week and then Michelle's parents came to visit with Gillian over last weekend. Also last weekend, Gillian and Mommy helped me to celebrate my first Father's Day. It was releaxing as we mainly hung out around the house. I got a brand new grill for the new deck that we are planning on building...I can't wait to use it! This weekend brings Michelle's 1st anniversary of birthday number 30, so we're having a small get-together with friends on Saturday night. Happy birthday Michelle!

I have some video of Gillian and her new sweet dance moves that I will get uploaded as soon as I can find the cord to the video camera. Until next time....buh-bye.

Houston visitors

There has been quite a bit happening in the Madison household of late. This past weekend, we spent 2 days at the Great American Barbecue working on the ice team, while Gillian stayed the night with Miss Michele (her regular babysitter), and then Uncle Josh and Aunt Abby came and picked her up. Nana, Pops and Aunt Amy came and hung out with them throughout the day on Saturday. Gillian told both her Mommy and I that she had a GREAT time! We had a great time at the barbecue, but we were definitely ready for some Gillian time!

Sunday afternoon, Uncle Mike and Aunt Angela (from Houston) drove up to see us. They brought their 2 kiddos, Josh and Emma. We had a very busy couple days with them as we barbecued on Sunday night, went to PowerPlay on Monday, and visited the Deanna Rose Children's Farmstead on Tuesday. Tuesday night, we visited our favorite barbecue joint in KC, Oklahoma Joe's. All in all, it was a great time and so much fun to see the kids play together. They're all growing up so fast!

Yesterday morning, the Mike, Angela and their 2 kids loaded up in the car and headed to Tulsa for a visit with the rest of the family. Michelle and Gillian hopped a plane to Tulsa for the same visiting reasons and will be coming back to KC on Saturday.

Here are some pictures from their visit to KC....

Happy Mother's Day, Michelle!

I know it's a little too late, but I did not have a chance to post this video that I made for Mother's Day, when it actually WAS Mother's Day. Even still, none of that diminishes the importance of the day.

Bathtime and the washcloth game

The other night when Michelle was bathing Gillian, she called me in so I could see the new game that mother and daughter had discovered together...what resulted was a 15-minute laugh attack every time Gillian had the wet washcloth tossed to her. She of course can't catch it yet, so it typically sticks to her chest and/or upper torso, at which point she cracks up. The best part is that she discovered her giggle. Luckily for everyone...I was able to get it on video tonight. Watch closely and she will show you what else she's been doing lately.

Buh bye!

9-month appointment

Michelle took Gillian to her 9-month appointment today. She is doing very, very well. She weighs 19 lbs. 4 oz. and is 28 1/2" tall. We have noticed that her weight gaining has tapered off considerably since we've been feeding her baby food. All seems well in the world of doctor's appointments so not too much else new there.

Gillian has been running a fever off and on this week, so we think she might be cutting another tooth or 2. With her 2 on the bottom and the new one(s), she's gonna be ready for real food before we know it!

Can we get a round of applause?

Last week as we were watching KC native David Cook on American Idol, Gillian decided that he was her favorite too....Watch the video to check out her newfound skill.

A belated Happy Easter!

Sorry for the late Easter greetings, but the flu has had both Michelle and I very out of sorts this week. I wish it wouldn't have happened this week because it's Michelle's spring break, but I guess it's better that she doesn't have to call her principal for a sub!! Anyway, we hope everyone had a very blessed Easter and you were able to spend meaningful time with family and friends...



We spent the Easter Sunday with Dan and Margie Coon and enjoyed their company and some NCAA basketball....keep rollin' Jayhawks!!

Today is also an extra special day for Sofia Rose Miller, daughter of Kenny and Jennifer Miller. She is having her repair surgery for CDH, that I had posted about a while back. You can read more about how things are going over at their blog....please send all of your prayers and thoughts their way today at 1:00 pm CST.

Gillian's first haircut

What?!?! No...she's only 8 months old. Yup, but have you ever seen an 8 month old with twin rat tails reaching to between her shoulder blades? Well...let's just say it looked pretty silly. So last Thursday we had her hair cut. She was very fascinated with the scissors, but other than reaching for them a couple times, she sat perfectly still and stoic.

Pre-cut....

Mid-cut....

Post-cut...

Being a Mommy and Daddy is awesome!

The incredible thing to Michelle and I is how much Gillian seems to change day over day. From pulling herself up to furniture one day and being frustrated with not being able to figure out how to move her legs to the very next day standing underneath the dining room table and 'cruising' from one chair to the other. Just last week, we still enjoyed the great big toothless grins, and now this week, we can no longer describe the grins as toothless....yup, you read that right, Gillian has a tooth! Michelle noticed it last Friday night as we hung out at the house. Now we're noticing that the tooth right next to it is not far behind.


Gillian loves playing in the laundry basket!!

Still a fan of bathtime!!!

Finally, an update!

The last time anyone heard from us about our little Gillian, not much was new to report. Well, suffice it to say, things have changed just a bit. In the past month, a few things have happened. A little over 3 weeks ago, Michelle and I noticed that Gillian had definitely been pulling herself up to certain pieces of furniture. We noticed this over a weekend, and we thought it would only be a matter of time before she stood up in her crib. Little did we know it would happen the very next day (not once but twice). On a Sunday morning, I went in to wake her and she was standing in her crib, just hangin' out waiting on someone to come and get her. She has grown so, so much. She is also crawling (very quickly, I might add), and can make it everywhere in our upstairs in a matter of a few seconds. In the month that I have not posted, the blog also turned 1 year old. Hard to believe what we were doing a year ago at this time...some of the old posts were definitely fun to read.

In other news, we would like to extend our condolences to the Danz family. Don lost his mother, Mrs. Danz late in January. Please know that even though we didn't post anything, we have definitely been thinking and praying for you Danz Family!

I don't know if I posted anything at the time of Gillian's birth, but Michelle's first labor and delivery nurse, was none other than Jenn Miller, with whom I went to high school (then Jenn Troxel), and so periodically we have kept in touch and we were elated to hear that her and her husband Kenny are expecting their first child in March. In October, Baby Miller was diagnosed with CDH. Jenn has started her own blog to keep up with their experiences and for support and encouragement. Please keep the Miller family in your prayers as they approach their due date. You can read their blog here.

Our new favorite thing

As I told you last week, Gillian went to visit with Dr. Fischer for another round of shots and a wellness check. She is changing every day, so it's not hard to believe that she weighs 18 lbs. 3 oz. (88th percentile) She is 26 3/4" long (70th percentile) and her head (while it did grow 1/2" in circumference) remains in the 25th percentile.

On more of a dour note, Saturday marked 8 years since Mom passed away. That day is always a stark reminder that we must hang on to everything with which we have been blessed. Not a day passes without subtle reminders of my mom. These last 6 months have given me a new perception of what really matters and how quickly things of this world can evaporate. As unbelievable as it is to those who lose a loved one rather unexpectedly, clarity and healing does come with time. We are simply given more hurdles to jump and greater mountains to scale.

Since Saturday marked an important date, Amy, Josh and Abby came over for dinner and games. The night was capped by a congenial Gillian showing off her new-found laughing chops...enjoy, I know we did.

Headed to the doctor....

Well, I've officially managed to miss posting anything about Gillian's half-birthday (which happened last Saturday.....this will only be meaningful to a few of you........Happy half-birthday what?!?!?!). We are going to the doctor today so we'll get to see just how big she has gotten over the past few weeks. We'll also be starting baby foods after today's visit, so that will be a blast!

I also managed to get sawdust in my eye last week and scratch my cornea. I was out of commission for a couple days, but things are back to normal. No questions on this one, let's just say it was an act of my own stupidity.

Here's a couple pictures from our Christmas break.

Gillian is crawling!

Okay, so maybe it's more of a scoot, than a crawl, but she is moving forward!

We spent Friday evening and Saturday in Gas with my maternal Grandparents as they were moving to Ft. Smith, AR. As I was helping to load the moving truck, Michelle came and got me and told me that Gillian was moving forward! Sure enough, Angie and Grandma had put a cell phone on the floor in front of her and off she went.....just like her dad, she already likes the phone :)

We are trying to get it recorded, so hopefully that video will be forthcoming.

In other news....for the first time in a YEAR (since we moved into the house), there is a car parked in the garage!! We got home from Gas on Saturday night and yesterday was spent making room and organizing our things in the garage.

Belated Happy Holidays

A very belated Happy Holidays to everyone. Our holiday break was jam-packed trying to visit with everyone in a timely fashion.

After Gillian awoke to her first toys received from Santa Claus, the Madison family came to our house so we could share the day with them. We cooked a 20 lb. bird and then everyone else brought the side dishes. After that we unwrapped gifts and played games. It was sad because the time was so short, but with Christmas falling on a Tuesday, some of us had to work the next day, so we made the best of our time together.

The day after Christmas, we drove to Tulsa. If not for a snowstorm that was passing through the midwest, that trip would have been uneventful. As it was, we ended up getting to Tulsa fairly late. The next morning, we were able to visit with all of Michelle's siblings (Mary, David, and Catherine) who live in Tulsa. Gillian was also able to visit with her cousins Drew and Will. After Don finished working on the night of the 27th, we had a family dinner and then shared Christmas gifts with one another. Again, it seemed as though our visit was all too short....

The next day, we woke up and piled into the car again for a trip to Houston to see Michelle's other sister, Angela and her family. We made it down to their house just in time for dinner. The weather was a welcome change from the snowstorms and cold that we had seen for the month prior. The temperature hovered near 70 degrees during our stay in Texas. We took advantage of the weather and Josh, Emma and Gillian were able to go to the park and play. We also visited the Children's Health Museum and a special exhibit that was temporarily on display. It had a Sesame Street theme, so as you can imagine, the kids loved it! As it always does on vacation, time flew and before we knew it, the time had come to go home. On New Year's Eve, we got up early and began the 12 hour trip home.

I have many, many pictures that I'm working on getting posted, so please as always, bear with me :)

I have other Gillian news.....read the post above....