Week 1....We're Never Coming Home...

What a month...

No one can ever accuse us of being boring. There have been just a few things that have happened since my last post, and after I fill you in, you'll see why we seemingly fell off the face of the planet.

As usual, life has been a constant emotional roller coaster. In happy news, we got official word from the hospital that EVERY single test of Claire's came back normal. While doctors were originally convinced that she was suffering from a genetic or metabolic issue, this doesn't seem to be the case. Now, the genetic screening could have missed something obscure; however, as I told the doctor, they could have given us truly awful news, so the fact that she had nothing to share was an immense relief. The bad news is that we still have no idea why Claire is so tiny and weak or having seizures, but the fact of the matter is that we just have to take things one day at a time and be thankful for her progress at therapy.



When we weren't at work, therapy, or school, we spent our time enjoying the beautiful fall weather. Since Claire likes to sleep in on the weekend, Luke insists on getting some extra time on the swing. Notice that he was too excited to even put his pants on.

We didn't have that much time to play though because it was time to pack for our trip! Luke thought that if he hid, I wouldn't make him help me. Never fear though, somehow we managed to successfully pack for three months away. In fact, we should go on trips like this more often because my house has never been so clean.

Turns out, it wasn't packing that presented the real challenge. Instead, it was squeezing in all of our appointments and me managing to somehow get in a little bit of work. Two weeks before we left, we managed to have eight appointments. Yep, that was not a misprint - 8 appointments. Have you ever tried to schedule that many places to be while working? Then, to top things off, Claire managed to pick up a stomach virus the following weekend (shocking, right?). After projecting bodily fluids out of both ends of her body for an entire day, we ended up in minor emergency; however, the doctor wasn't surprised because he said it had been going around. If she was still sick the next day, we would need to take her to the emergency room to make sure she wasn't dehydrated.

We made it from 4 a.m. that Monday until 1:30 in the afternoon, and I was convinced we were in the clear. Not the case. As usual, my standby emergency crew (Girl Mahaffey) snapped into action, got Luke home from school and fed, and Claire and I headed to the children's hospital for an IV. After 5 tries, the nurses finally got it in, and she was as good as new. I, on the other hand, found out that I can't stomach a needle going into my daughter's head. Apparently, it is a last resort when no other IV will work. Sick. Instead of showing you a picture of that, here is Luke at the eye doctor's office waiting to get a new pair of glasses!

After the chaos of sickness and packing, it was finally time to embark on the first leg of our journey - a drive from Shreveport to Wichita. Minus both kiddos coming down with AWFUL coughs (again, my kids sick? Shocking, right?), the trip was a breeze! Although  I spent countless hours developing complex contingency plans, none were needed. Instead, we only stopped one time on the way to Dallas and one time between Dallas and Wichita. I have a firm rule that the car goes until it is out of gas or someone (Claire) is hysterical. Thankfully, we stopped only because the car was out of gas and the poor kiddos needed some food.

When we finally made it to Wichita, it was time to celebrate Thanksgiving/Christmas with Grandpa Cesar and Grandma Karen. Luke was fascinated with the trash can, and as you can see from this picture, Mickey liked to hang out there too. In fact, Luke now owns Mickey's twin brother because we're pretty sure Mickey #1 is living at the city dump. 

Then, we packed up the car again and continued our journey north to my parents' house in Topeka for another Thanksgiving/Christmas celebration. While there, we noticed a bad trend in the family. My sister had to have an appendectomy the night before we arrived, and the day after we arrived my mom got sick with the flu. It wasn't the end of the world; however, Grandma Karen had also gone down with the flu while we were there! We decided that if Patrick got sick after we arrived, then it could be confirmed that we were the carriers of illness. Although we felt bad that everyone was sick, I was grateful that the kiddos and I were well enough to travel. Here is Luke getting some final rest at Uncle Mike's apartment before our big flight.

Luckily, Claire had Feisty to watch over her so mommy could get some rest. Mike and I decided this is reason #968 why he isn't ready to have kids - putting a giant stuffed dog to watch over the baby probably won't win you any "Parent of the Year" awards. Whatever. Claire loved looking at the dog, it kept her happy, and she fell safely asleep. Thanks, Feisty.

WE FINALLY MADE IT!!!!!!!!!!!!!!!!! The flight was a breeze, and I am eternally grateful to children's Tylenol and Mickey Mouse Clubhouse DVDs. Claire's awful cough bothered her on the flight, and she did cry a bit, but I could not have been happier with the kiddos. US Airways is AMAZING! Everyone was so helpful and considerate. Several people asked me who I was flying with, and I just looked them directly in the eyes and said, "Well, the kiddos and I!" It was always funny to watch their reactions. One lady gave me a hug and said, "I'm a grandma and I'm sitting in row 12. Just yell for me if you need." Thankfully, no emergency yelling was required. The highlight of the trip was the vodka tonic that I was looking forward to. When we took off, I decided that on the last beverage service I would order a drink. Then, I had something to look forward to. When it was finally time, I told the flight attendant how I had played my mental game. She handed me the drink and said, "I'm not even going to charge you for this." I told her that she was my hero, and she said, "No, you're my hero for flying with these two." Did I mention that I love US Airways?

We landed safe and sound, and I instantly handed the kiddos off to Patrick. Now, that is true love. I remember our last trip to Hawaii on our honeymoon when we were romantic and thought life was always going to be peaceful bliss. Now, romance involves someone taking the kids so the other can regain some sanity. Nothing can top that for this tired momma! When we made it to the hotel, Luke was ready for the beach!

The tropical air is already having a positive impact on Claire. She has eaten more here than she ever did back in Shreveport. So far, she has only had one little crying spell, and that was because we introduced bananas into her diet. Risky, but the poor kid can't only drink formula for the rest of her life!

We spent our first two days driving to North Shore, lounging at the beach, eating delicious food, and seeing old friends. We told Luke that this was going to be our new life for the next 3 months, and he couldn't believe it!

Better get some rest before the next day in paradise!

Halloween and Progress

Sorry this post is a few days late, but here are Halloween pictures! Claire decided to be a cheetah because we found cute ears and a tail to match her awesome leg warmers. Unfortunately, the tail didn't last, and apparently from this picture, she doesn't like people messing with her ears either. Luke was shopping at Target last week, and he found this Hulk costume. I didn't think he really cared about Halloween, but it was the one thing he kept crying about when I put it back on the shelf. Plus, it matched one of his cutest outfits. Don't worry Grandma Karen - he'll still put his Saints jersey to good use!

Other than Halloween, progress at therapy is our big news! It seems like the neurologist may have really known what she was talking about because Claire's personality has transformed on her new medicine. Whereas she always seemed like a very tense baby, she was actually very relaxed this week. I thought I had been noticing a change, but it is very easy to over-analyze; however, within the first five minutes of therapy, Patricia, Claire's therapist, raved over how alert and happy she seemed! Whew!!! It wasn't just me being a crazy mom!!!

Claire's biggest improvements have been with her head control during tummy time. Since she stayed hunched over for so many months from her belly aches, her shoulders are very weak. So, we're spending lots and LOTS of time trying to get some extension in her upper back.

I took this picture the other morning, and it shocked me. This is the first picture EVER where Claire looks happy and healthy. Notice that she's looking at the camera, her cheeks are rosy, and she's smiling!!! These are all three things that had never happened at the same time prior to her new medicine.

 
She's still a little small and weak, but she's starting to enjoy her exer-saucer. The music and textures keep her entertained. This picture is unusual because usually big brother is right there helping her press buttons. He has been really good at helping her with her workouts. I think he figures that he's the therapy expert so he can teach her a thing or two. However, when we were working on rolling over, he tried to lead her by pulling on her ears. I don't seem to remember that from his therapy sessions...

YOLO!!

YOLO!!!! Do you know what that means?!?! Nope? It's okay because none of us on the Sigma Kappa Girls Weekend knew either. Apparently, by the time you reach your 10-year-friendship anniversary, you're out of touch with the coolest slang. We might not know the right acronyms, but this weekend was a reminder that, indeed, "You Only Live Once".

After the first leg of my trip, I asked the flight attendant for some assistance getting off the plane. Dragging two kiddos and a giant bag down the aisle wasn't quite as easy as I had hoped. To my dismay, the attendant responded that "she wasn't there to take care of my luggage". Whatever. I was in my happy place, and nothing was going to stop me from seeing my family and friends! 

This kiddos were as good as gold for all parts of the flights, and as promised, Molly was there to greet us at the gate when we walked off the plane! Not only was it awesome to catch up with her since it had been a year since we last saw each other, I realized that she saved a significant portion of my sanity by being there to help. By the time we made it to my parents' house, we didn't even need a nap and were ready to play.

Grandma Malone and Auntie Theresa were ready to play with Luke and snuggle with Baby Claire, and the two kiddos enjoyed being spoiled rotten for the entire weekend. Once everyone was settled, it was time for momma to party!! Well, I say "party" in theory because not only did we discover that we no longer know the latest slang, staying up late isn't exactly in our repertoire either. Despite the evident shift, nothing beats a weekend with the girls. We hit up our old stomping grounds, drank our favorite drinks, and enjoyed Wheel pizza. Most importantly, we laughed.

 Over the past ten years, we have been through everything together. From dating and meeting our husbands to fertility issues to sick kids and spouses to the deaths of parents and siblings to having babies, we've celebrated milestones and limped along and picked each other up when the going got tough. This weekend was no different, but for the first time, our kiddos were old enough to play with each other! It's a very surreal feeling when you're walking through your old sorority house with your old room mates and you have five kiddos with you and one friend about to have another baby in a few weeks!

After a weekend away, we're all ready to face the world again. Uncle Mike met us at the airport to help us along, our flight was uneventful, and we were home with dinner done, bags unpacked, laundry folded, and all in bed by 9 p.m. This was a good practice trip because our next one is in 24 days when we leave for HAWAII!!! After analyzing our situation, talking to Claire's doctors and Luke's therapists, making arrangements with my work and the kids' daycare, we have decided to head out for our trip earlier than originally planned.

Apparently, the news of this change has made Claire very happy. I don't know if it is the excitement of leaving for Hawaii, the power of prayer, or her new seizure medicine, but we are definitely seeing improvements in Claire. Over the past few days, I had been thinking Claire seemed a bit more attentive; however, I'm prone to over-analyzing (shocking, right). Today at therapy the first thing Claire's therapist commented on was how attentive she was!! We're getting a lot more smiles and a lot less tears, so please keep the prayers coming. Doctors still don't have any results for us, but at least we have a trip to get ready for.

In response to all of your kind e-mails, texts, cards, meals, bottles of wine, etc., thank you. This month has been emotionally rough. Poor Claire has been through a lot, and the logistics of rearranging our lives has been daunting, but the words of support have made it seem more manageable. Patrick thanks you as well because he is receiving far fewer phone calls from his emotionally distraught wife :)

"A true friend is someone who thinks you are a good egg even though he knows 

you are slightly cracked."

I finally found my words

The other day at work I sat there listlessly staring out the window watching kiddos run around on the playground, and I saw something amazing. There was Luke, running around with his friends in his funny Frankenstein-like walk. Although this doesn't seem like the most earth-shattering observation, it is for a little boy who doctors said may not walk until he was five. As parents, we needed to be prepared with "different" expectations because Down Syndrome was going to redefine our lives. They were right.

When looking back on our time in NICU, I remember wondering what our lives had in store. How were our friends and family going to react? How was I even going to find the strength to tell everyone that one sentence out of a doctor's mouth had shifted our entire universe? How were we ever going to figure out how to be parents, let alone to a sick little boy who couldn't even breathe on his own without help?

Mother Theresa once said, "I know God won't give me anything that I can't handle. I just wish he didn't trust me so much". While I agree with her statement, I'd like to amend it. "I know God won't give me anything that I can't handle without my friends and family."  Whether it was long hours in the NICU at birth or at Children's Hospital with pneumonia or just enjoying time together, our family has been Luke's biggest cheerleaders.

Through it all, Luke has shown more strength than all of us combined. From hours in therapy learning to hold up his head to bearing weight on his legs to walking independently, Luke continues to defy the odds and the dismal predictions that doctors made after his birth. Our hope now is that Claire finds the same sheer determination to fight the odds as she faces her own health struggles, albeit at this point, she seems to be perplexing the doctors.

To make a long story short, we have no idea what is going on with Claire.  During her 10 days in the NICU at birth, doctors suspected that she had some sort of genetic disorder due to her lethargy, low muscle tone, and recessed jaw, but the initial genetic panel came back clear. Since then, she has suffered from severe belly issues which have included an intolerance to almost any formula and even breastmilk.  Doctors have diagnosed it as everything from severe colic to immature digestive system. Well, when she barely gained one pound between four and six months, doctors finally agreed to admit us to the hospital for testing.

So, with Patrick deployed, Claire was admitted to LSU hospital three weeks ago for a full round of testing from cardiology, neurology, genetics, and everyone else who felt the urge to see the mystery baby. While the initial tests for blood enzymes/metabolic issues have come back clear, neurology performed a video EEG to assess Claire's brain activity. Unfortunately, they saw "abnormal wave lengths which indicate seizure activity", so we've begun medication. The good news is that our new prescription formula seems to be doing the trick with the belly issues. Now, the elephant in the room is "What the heck is causing all of these issues??!?!"

For now, all we can do is pray. If it is a genetic or metabolic disorder, there is no "cure". The question at that point is what medicines or therapies can we use to minimize any secondary symptoms associated with the diagnosis.  On the other hand, doctors may never be able to pinpoint what is going on. Babies are fighters. We have now spent 48 days in the hospital between the two kiddos watching them fight. Maybe this will all end up being nothing or maybe it will have a more profound impact on our lives than even Down Syndrome did. Only God knows.

This takes me back to my original point that doctors were right. Luke's diagnosis impacted our lives more than we ever anticipated; however, the distinction is, as Patrick always reminds me, is that it did not define us. We have been introduced to a world that we might have otherwise taken for granted. From teams of doctors and nurses to therapists to Alycyn, one of the dearest babysitters we could have asked for, people entered our lives whom we would have never met. Furthermore, we learned true compassion from our family and friends as Grandma Godinez has driven hundreds of miles for every hospital stay, my family has let me talk/cry/analyze every situation, friends have kept us fed, and neighbors have stepped in to take care of the house and dogs.

Today, we're in a situation that we least expected. We're up against a world of unknowns for what the future holds for Claire, but it is what IS known that will get us through. Quite simply, our friends are phenomenal. Typically in a stressful situation, I'd rely on Patrick for support, but in the funny twist of events that we call "military life", he is deployed to Hawaii. So, Kristen calls frequently to make sure I don't need to vent about the doctors' inability to agree on a direction to go, Angela keeps me fed, Girl Mahaffey supplies me with her infinite medical knowledge when I have no clue what doctors are saying, somehow Suzi has managed to keep me fed and with drinks all the way from Colorado, and there are countless others who have called/texted just so I know that they are thinking about us and praying.

Just the other night, Patrick was lecturing me that I can't sit here feeling sorry for myself and I told him to shove it. The truth was, I did feel sorry for myself. What are the odds to potentially have two special needs kids? What are the odds that one diagnosis would come when Claire was 7 months old and Patrick was deployed to Hawaii (seriously, who deploys to Hawaii?!?)? Why was I having to face this by myself? Tonight, Molly pulled me out of my emotional funk. I'm flying home to Kansas on Thursday for the annual Sigma Kappa reunion, and quite frankly, I am terrified to fly with both kids by myself. Although Claire's belly seems to be doing better, I can't say with 100% confidence that she'll be feeling well for the flight. Pair that with "The Human Tornado" aka Luke, and to say I am overwhelmed is the understatement of the year. But, after crying on the phone with me earlier, Molly surprised me with a text that she's meeting me at the Kansas City airport so that at least when I land, I don't have to be alone. Although, what I can realize now is that I haven't been alone yet.

"Please be a traveler, not a tourist. Try new things, meet new people, and look beyond what's right in front of you. Those are the keys to understanding this amazing world we live in."

For now, please pray for Claire. Pray that she has the strength to overcome whatever is going on in her tiny body, no matter how minor or major it may turn out to be. And thank you - for everything.

Claire rockin to the 80's!

Intruder

If you haven't heard, I have replaced my husband with a new significant other: my treadmill.  It fills the void in the house, keeps me entertained, and most importantly, it doesn't make a mess. This morning before the chaos of the day, we were spending some quality time together and getting caught up on missed television. When I finally couldn't procrastinate any longer and still make it to work before noon, I headed into the bathroom to get ready for the day. Suddenly, I heard a loud bang in the living room. Frantic, I grabbed the remote to turn down the television, and I listened intently from the bathroom doorway. Then, I heard the blinds on the front door banging against the door frame. By this point, I was shaking uncontrollably and thinking, "What the hell am I supposed to do and why aren't my dogs doing anything to protect me!?!?" So, logically, I ran into the hallway, still sans clothes from my shower, and flipped on the light. Yes, so the intruder could see my look of utter fear. Instead of a man in a black mask, I came face to knee with the cutest little midget squealing "Eat, eat". Apparently, in my obsessive compulsive habit of checking on the kiddos 1,000,000 times in the middle of the night, I didn't close Luke's door quite all the way. But, if an intruder ever does enter the house, the new man of the house has been practicing his martial arts skills and will keep me safe.