Good News/Bad News

With the big 3-0 fast approaching, I've been spending considerable time analyzing my 20s. Ten years ago I was living in the dorm, partying....I mean studying, and excited that Patrick and I were finally in the same town. Now, I'm living in a house full of blocks and Mickey Mouse toys, thrilled that I stayed up with our friends until midnight last night, and unsure of what town we're supposed to be living in. Never in a million years would I have guessed that at 30 we would be traveling to a Children's Hospital in Little Rock every three weeks to monitor a little girl who just doesn't want to grow. If you had said life would throw in a three year old with Down Syndrome, a job as a project manager for the non-profit world, and the chaos that only the AF can provide, and I might say you were bat-shit crazy. But, what my 20s taught me is that life IS bat-shit crazy. Whereas a 10 page paper used to stress me out, I consider it a life challenge to see how many ridiculous items we can juggle just for the sake of saying we survived. No, really I just want to curl up with a glass of wine and a trashy book each day, but apparently God thinks I need to make better use of my time:

August 16:  Claire went to Little Rock for her 6 week GI check-up, and we thought it would be smooth sailing because she had been eating like a champ. WRONG!! Although the doc was thrilled with her development, her weight gain was less than stellar. So, the challenge was that she had to gain one whole pound by September 13th or we would be admitted for additional testing/monitoring.

August 23:  Did I ever mention that I have an insane career path? Teacher turned technical writer turned database manager...yeah, makes no sense. At least my current career trajectory finally has some logic. Our national office contacted me to see if I was interested in a new position to run the database for one of our service areas, and I was! The irony of this position is that it is over the VOA Service Coordination program which provides assistance to not only the elderly and low-income populations, but also to adults who can not live independently due to physical or mental handicaps.  Refer to my previous comment that God works in mysterious ways.

August 25: Apparently I have some psychological issues over turning 30. I thought it would be a great idea to go run a half marathon for my birthday just to prove I could. What was I thinking when I picked "The Hottest Half"?? It was appropriately named. In other news, I can finally feel my legs again.

August 25th (Night): Claire woke up screaming. It was an awful flashback to her days before belly meds when she couldn't stop crying and appeared to be in agonizing pain. Not wanting to be the psychotic parent who runs to the  doctor every 5 minutes (we are already there enough), we tried to wait it out. When the screaming didn't stop, we finally went to the doc, and go figure, the poor princess had a UTI! The doctor gave us medicine, and we thought all was better until....

 August 29th:  Claire was still screaming, and my parents were headed to town. We were going on day 4 of holy hell, Luke was getting over pink eye, and I ended up in minor emergency with an ear and sinus infection (Hello, I thought only five year olds got ear infections!). Did I mention Patrick had been in at work at 4 am that week? Godinez breaking point was successfully reached. When Claire screamed so hysterically on the way to school that she started choking on her slobber, I decided enough was enough and we headed straight to the ER after getting off the phone with our doctor because time has told us that nothing with Claire is EVER as simple as it seems. Yeah, until the little turkey calmed down when the doctor finally saw us an hour later! DING DING DING...there was no pattern to the screaming because it happened only when she had to pee. She was holding it, making herself hurt, and then it burned so bad after she went that it was a vicious cycle. No wonder those doctors make so much money!!! Refer back to my previous comment about not wanting to be a neurotic parent.....oops.

By the end of the day, the meds kicked in for all three of us. Luke could see, I could breathe, and Claire could pee....trifecta of medical success, and just in time for Grandpa and Grandma to arrive!!! We had a great visit that included a day at the lake, BBQ, a visit to some plantations, and plain old relaxing. Both kiddos loved being spoiled, and it was especially fun to watch my dad run around with Luke. By the end of the trip, they were best buds.

September 11-13th: I headed to DC for my first meeting for the new job, and Patrick practiced his single dad skills. I must say, he is getting very good at the gig! The only thing to suffer was Claire's hairstyle, but thankfully I had apologized to Claire's teachers before I left. I don't know what it is about wrapping a rubber band in her hair that is so challenging....

Sept. 12-13th: I came home from D.C. at 8 pm on the 11th, and thankfully we weren't delayed because we were back out the door headed to Little Rock for the dreaded appointment. Although Claire had been eating like a little piggy, we knew she hadn't hit her target weight. However, much to our surprise/delight/frustration, the doctor decided not to admit her! Despite missing her target weight by a few ounces, the doctor was happy that she had gained considerably more than at her previous appointment. Now, remember - we have to define "considerably more". We're only talking a few ounces here, people. Apparently in the GI world, this makes all the difference. Although we NEVER want to spend the night in the hospital, the frustrating part about this success is that we are still in the danger zone. Claire is treading dangerously close to needing more testing.  We do not want her to undergo any unnecessary invasive testing; however, the peanut needs to consume calories so she has the strength to develop. Unfortunately, now we're back to appointments in Little Rock every three weeks with the threat of admitting each time.

So, for my last week of my 20s, I'm waiting. Waiting on the results of Claire's genetic testing. These are answers that we desperately want and yet desperately don't want to hear for fear of the long-lasting implications. We're waiting to see if Claire can continue her trajectory of weight gain to avoid another hospital stay. We're waiting to see if the AF can find a way to give us the move that Claire needs Although we can drive to her appointments, 8 hours in the car every three weeks is not sustainable. Plus, add in missing our 8 weekly appointments (yep, still at 8), and we've crossed to a whole new level of ridiculousness.

Tonight, say a little prayer for Claire. Pray that she gains her weight, grows a little stronger, and somehow will stumble into exactly the right doctor's office that can shed light into her mysterious health issues. Say a little prayer, too, that this bat-shit crazy life we live will finally calm down enough for me to enjoy that glass of wine.

Just Keep Swimming...

Hello there!  It feels like summer has hit a tipping point. Louisiana's notoriously hot and humid summers, especially in the last few years, have been brutal.  This year, however, has been much cooler.  Not to say that things are "cool," just cooler.  Which has been nice, when we have a crazy 3 year old that just wants to go run around the back yard!  We got a new pool for The Dude to splash around in and he loves it.  It also had a random side effect.  We went on the boat this weekend and Luke came up to both of us and begged to get into his life vest and get into the lake!  He usually hates swimming, but it was all we could do to get him out of the water!  Crazy kid!

Luke also likes to cook now.  Even if we microwave his nuggies, he has to watch them go around.

I don't even know what we are making, but stirring it sure is fun!

 Lets not forget his favorite activity.  Which is pretty much doing anything while naked.  I don't know what is wrong with him, but he is frequently running around with his butt out

Now, the siblings have been getting along pretty well.  With Claire getting a bit stronger and able to sit up and keep her head upright, Luke is finding more interest in her.  Claire might SEEM like she enjoys Luke's impression of Gene Simmons, but really it's just the rockin' plane they are on.  That girl likes to be moving a lot!

Finally, Claire's eating has gotten a lot better, but she still isn't gaining weight.  She seems like she is putting on some chunks, but the scale doesn't lie.  The GI doc was pleased with her development, but not her weight.  So we need to go back in a month.  She seems to be doing ok though!  Just look at her sassiness!

Well, thats about it.  Melissa is fast asleep in the bed and Ralphie is keeping my left leg warm.  Hopefully it won't be another few months until we write again!  Just hang in there with us!

July?? Really???

Where is 2013 going? Weren't we just getting ready to head to Hawaii to see Patrick? Summer is flying by, but we're happy to report that life is still nice and quiet. We have still been on the road quite a bit to see doctors for Claire in Little Rock and Dallas; however, we can't complain too much because we have been consistently receiving good news. Our latest trip was to an opthamologist with Cook's Children's Hospital in Ft. Worth. Our doctor in Hawaii had mentioned her small optic nerve, but at the time, we didn't think much of it. Well, when her most recent MRI not only showed a smaller than normal brain, it also showed a small optic nerve. So, back to opthamology we went! Fortunately, although Claire is considered to have Optic Nerve Dysplagia (fancy name for small optic nerve), the doctor is very encouraged by her vision. We'll re-evaluate in 4 months to see if glasses and/or surgery could potentially improve her vision.  Cross your fingers that we'll at least be able to obtain some form of correction. As far as the long-term impact, we have no idea how her vision will be impacted.

Sine all of the time on the road is exhausting for Claire (and the rest of us), we have finally decided to stop rushing around from one appointment to the next. For example, last week Patrick and I both took the entire day off on Thursday for travel instead of leaving after lunch and squeezing in a 1/2 day of work. This made all of the difference because the kids travelled much better which meant far less stressed parents. We stayed at The Gaylord, one of our favorite hotels, and enjoyed lounging in the lazy river after a long morning of travel. Luke LOVED the lazy river (just like his momma), but princess Claire wasn't sure what she thought about the cold water on her toes, so she just snuggled with daddy on the chairs. Despite a thunderstorm cutting our time a bit short, we had a great time. The storm was actually a good thing because we were showered, dressed, ate dinner on the property, and were back in the room and ready for bed nice and early since Claire's appointment was first thing in the morning.

Other than getting the good news in Ft. Worth that Claire's vision was better than they had anticipated, we have just been having a nice, relaxing summer (which explains the lack of posts!). Each day Claire seems just a little bit stronger and has the endurance to play longer without rest, and her favorite thing to do is watch crazy brother Luke run around the house with his crazy imagination. Who knows what is so exciting in his mind, but whatever it is sure must be awesome. He loves to pretend talk on the phone, play with his new kitchen, or swim in the backyard. Although Claire isn't a fan of the heat, she sure does love watching tv or rocking on the airplane rocker with her big brother!

 Lunch is over already!??!?

 Lazy Sunday mornings in bed.

 The leg braces (and big brother) are helping Claire learn to balance on her legs!!

 Although Luke has a play kitchen, he insists on helping cook. Luckily, he has lots of opportunities since Mommy has become obsessed with Pintrest.

 Claire has to sit in the high chair to play so big brother doesn't steal her toys.

 But playing is exhausting, and sometimes she just needs a good nap.

 Like I mentioned, Luke LOVED the lazy river!

 And he even thought he should order a tropical drink after swimming.

 Claire, on the other hand, just wanted to let her hair blow in the breeze.

Weeeeeeeeeeeeeee.......If you saw how hard Luke had been rocking this thing, you would understand why Claire is making this petrified face :)

Lazy Summer Days

Several of you have asked why we haven't been blogging lately, and for once, I can say it is because there hasn't been anything exciting to blog about! You all who know us well realize that won't last for long!!! We have been spending quiet weekends at home, hanging out with friends, and going out to the boat. It has been GLORIOUS.

The only big news has been Claire's crazy medical schedule. We're currently in the middle of three doctors, three hospitals, three state tour. She received brand new leg braces from Shriner's Hospital here in Shreveport on Tuesday. They are just like the ones that Luke wore for about a year - only hers are much cuter! Patrick and Claire headed to Little Rock for a GI follow-up, and we finally had a good report!! She will stay on all of her meds and supplements in hopes that she continues to gain at her current rate.  As we push on her developmental milestones, we have to make sure we don't use up all her calories. The big appointment is with a new Neurologist in Forth Worth who specializes in seizure disorders in children. If this guy can't confirm that yes she is having seizures or no she isn't, momma might end up in jail for going postal. If she is having seizures, then it isn't a big deal - we just need to confirm that she is on the right meds. We shall see! Say a little prayer that this doc has some answers.

 This isn't a very good view of the braces, but they are turquoise with flowers and lady bugs. These help stabilize her ankles so she can learn to stand. With her low tone (just like Luke), it is hard to keep her balance.

While daddy and Claire were in Little Rock, Luke and I enjoyed breakfast at Starbucks. My rule is that if one kid has an appointment and daddy can drive, I take the other one out for breakfast. 

 Luke LOVES his new speech therapist, Ashley. He doesn't receive services through the schools during the summer, so we signed him up where Claire receives physical therapy (very convenient for two working parents)! He is starting to say two word phrases such as "throw ball". He can name his colors and identify most animals/animal sounds in a book.

 Ice cream truck!!!!!! Luke had no idea why I suddenly grabbed him off the slide in the backyard and bolted out front until he was enjoying his summer treat.

 Did we mention that the little peanut always wants to eat now?!? This is probably her favorite seat in the whole house. Her teachers have been very happy with how well she's eating now during meal/snack time.

 When she isn't eating, Claire likes to get in a good workout. Being on her tummy is still her LEAST favorite; however, she doesn't mind if she can be up on all fours.

 But, sometimes she would rather just chill on daddy's shoulders.

Occasionally, Patrick and I actually make it out together. There was a military function at one of the casinos, so we enjoyed a fancy night out with a bunch of friends.

But our favorite thing to do is enjoy a quiet night at home. Patrick is happy that Luke loves to cook as much as he does. We can't make anything without our little assistant helping.

 The weather is so nice that we have been able to spend several evenings out on the boat. Whereas last year Luke was terrified, he can't wait to jump on board. Claire loves the wind blowing through her tuft.

 These two are starting to be good friends. If we ask Luke to go play with sister, he usually does. I don't know if you can see the tv, but our daily tradition after school is watching Ellen together!

Sometimes Luke enjoys the new friendship more than Claire does.

But it is the moments like this that are priceless.

Happy Birthday, Claire!!! (Just a little late)

Happy Birthday, Claire!!!!! Well, it's only two months late, but as promised, here is your birthday blog :)  In the first year of your life you have taught us to appreciate the little things in life. Listening to your little laugh is probably one of our favorite sounds in the universe after the tears of pain from your undiagnosed illness. Praise the Lord for the doctors in Arkansas who found the perfect balance of food and medicine so  that you can have the chance to relax and be the sweet little girl that you are. You finally eat like a little piggy to make up for lost time, and in the last 4 weeks, you have gained more than you gained over the last 4 months!! Now that you're stronger, your favorite things to do are to sit in your bumbo and watch the doggies, pretend to beat up Luke, and take long swims in the bathtub.  All of the hours that you've spent in therapy are paying off because you're getting so strong :) Who knows what is in store for the next year!

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Oh. My. Word.

Did you wonder what the heck happened to us?!? We fell off the face of the earth, but after I explain, I think you might understand!

Well, after the tanned bliss faded away, it quickly became apparent that while we were away our immune systems had faded away as well. First, Luke and I each had a week-long bout with a mild stomach bug. Then, the inevitable happened and Claire ended up in the emergency room because she couldn't stop throwing up. Coincidentally, this happened the week before we were supposed to re-visit the GI doctor in Little Rock. Because Claire has not been gaining weight, throwing up after eating, and various other issues, we were considering admitting her to Little Rock Children's Hospital for GI testing and a possible feeding tube to allow her throat to heal from the vomiting. The doctors here thought her vomiting had increased due to the stomach bug that Luke and I had passed on; however, it quickly became apparent that it was more than that when she developed a severe cough.

That Monday morning, she sounding like a little Rice Krispie Treat with all of her wheezing, so we headed to minor emergency....only to be sent directly to the hospital to be admitted for low oxygen saturation levels. Sound familiar???? Oh yeah...it is why Luke has been hospitalized in the past! When I saw her levels, I thought, "This can NOT be happening!", but it was, so we jumped into "Godinez Emergency Mode". Long story short, Angela saved the day and let Luke move in temporarily, Laura visited between shifts, and Kristin supplied coffee. As usual, I made the standard emergency call to Grandma Godinez, and she jumped in the car to save the day!

In the midst of all of this, my mom was actually scheduled to fly into Dallas that week to visit during her Spring Break. If Claire was going to be admitted to Little Rock, she would be around for backup. Although we didn't get the girls' day in Dallas that I had originally planned, we skedaddled straight to the hospital. Luckily, Claire only stayed prisoner for 3 days, and we managed to keep Luke from developing any respiratory issues. Did I mention that through all of this I had bronchitis?!?!?!

The only thing better than one grandma is having two in town!!! Everyone shared the babies nicely, and I appreciated the backup because I climbed into bed and tried to move as little as possible for a few days to recover. But wait...there is one thing better than having two grandmas visit.....HAVING DADDY HOME!!!!

The Air Force took a little pity on us and allowed Patrick to come home just a wee bit early from Hawaii. I figured they knew that things were bad at home if he was asking to leave paradise to come back to Shreveport! I can't even begin to tell you how nice it is. While we were able to postpone Claire getting admitted to the hospital for GI testing, there is still the daily fear that she will not eat, relapse into stomach attacks, and fail to gain weight. But, this is all a breeze with another grown-up at home to analyze her! It is AMAZING how much spare time I have on my hands since I'm taking the kids to about 4 appointments versus the 8 appointments a week we were averaging for the past two months. Did I mention that I love having Patrick home?

I firmly believe that everything in life happens for a reason, and here is this for a perfect example:  

   - Patrick made it home

   - KU beat North Carolina to advance to the Sweet 16 in Dallas

   - Claire wasn't admitted to the hospital

If that wasn't God telling me to book a trip to Dallas to watch the Hawks, I don't know what it meant! After taking Claire's one year photos with our favorite photographer, we headed home, packed our bags, and set off for Dallas. If KU could have managed a win, the weekend would have been perfect! Regardless, we had fun at the game, visited the Fort Worth Zoo, went to Easter Sunday church at an awesome parish, had brunch, and headed home. 

Claire's special one-year blog will be coming soon, but first we have to wait on the rest of her pictures! But how did my baby turn 1 already?!?!?! For now, here are pictures of our mini-vacation, welcome-home-daddy trip to Dallas!

Trip of a Lifetime

I have been sitting here for over a week trying to decide how to summarize the past three months of our lives, but I don't think there are words for our experience.  Rewind to three months ago: we had several ill family members, Patrick was travelling constantly for work, and doctors had informed me that Claire was suffering from seizures and atrophy in her brain.  To say that we were in an emotionally low place is an understatement; however, by the grace of God, we found hope in Hawaii.

Being in a beautiful, tropical location was simply the icing on the cake. Nothing in this world will ever replace the opportunity for our family to be together as we sought a trustworthy medical team to reassess Claire's condition. Whereas doctors in Shreveport left us with little hope, the doctors in Hawaii listened to our concerns, consulted with one another, and while we still do not have definite answers, we at least now have the peace of mind that we have done everything in our power to find a cause of her currently undiagnosed neurological condition.

The only thing we know for sure is that she was born with less white matter in her brain than normal.  Essentially, this is the insulation that surrounds neurons which impacts gross motor and muscle tone. We still have no idea why or what this means for her future.  Several tests are pending, and the wait will be weeks.

Regardless of what the tests tell us, if anything, we will forever have the memories of these three perfect months together as a family.

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