So, do you like Texas??

Each day it seems like someone is always asking, "So, do you like Texas?" We attempt to keep a straight face and reply, "Nope...absolutely not!" Now, don't get me wrong - we miss our friends and co-workers, but life is radically different here.....in the best possible way.

All of you know that in our lives, the kids' therapists are pretty much extended family. Luke had his OT, Anita, since he was 12-weeks-old, and I wasn't going to let Claire have anyone else! Patricia joined the team as Claire's PT after we came back from Hawaii, and we loved her just as much. When we announced the move, the big joke was, "How many therapists will Melissa fire before she fills their shoes." Well, no firing needed.

Whereas in Louisiana Claire could receive 4 hours of OT/month through the Early Intervention Program, here she gets FIVE...yes.... 5 hours PER WEEK.....AT OUR HOUSE!!!!! The entire team of OT, PT, Speech, and Developmental Specialist work together toward common goals. In addition, her developmental specialist is our case manager, and she processes all of our insurance paperwork/referrals! Since I work from home (best invention ever), I just slip out of my office for as many of her appointments as I can. 

Ignore this sudden surge in free time and listen to what's new for Claire:

- Picking up food in an attempt to feed herself

- Assisting in standing up from seated position

- Vocalizations

- Bearing more weight on arms and legs

- SHE GAINED 2 POUNDS SINCE WE MOVED!!!!!!!

Who are the lady and little girl in the picture?!? Nope we didn't find a new family in San Antonio - just an amazing nanny and her cute little girl. We decided to take the kiddos out of daycare because the one here just didn't compare to Goldman. You'd be shocked at how difficult it is to find a daycare in a city this large that will accept and work extra hard with special needs kiddos! So, with Luke at the new school, Claire's therapists coming to the house, and me working from home - it only made sense to hire a babysitter here at the house. So, when the kiddos aren't at school or in therapy they go to the park, the bouncy castle, and other fun things that little kiddos do. Plus, Luke and Katherine have become best friends!

So, what do we do with our spare time? Well, we hang out and go out to eat...

And decorate the new house....(Luke and Claire's playroom...not Patrick's!)

 And go to Sea World...Luke's personal favorite....

Most importantly, we just get to hang out and not drive to so many out-of-state appointments!

Crossing State Lines

Remember that feeling when you moved off to college,
had no idea where you were or what you were doing,
and loved every minute?

That's the story of our lives
As we journeyed across state lines
From Shreveport to Texas to start a new chapter.

Notice that we've been absent from the blog
Since I turned the big 3-0
Though our excuse is legit.

Rewind back to September
When the news came
That to San Antonio we were headed

One week later we were there in person
Buying a house
and starting things right!

Then the shutdown happened
And put the move in limbo.
Football season started....

And October came and went.
Before we knew it
Halloween was here and over.....

We tried to kill time
by hanging out at our favorite places.
Starbucks was our favorite where they knew our faces....

We stayed living out of boxes
And couldn't find a thing
for longer than we anticipated....

Our only sense of routine were our appointments.
Claire continued to get stronger,
And brother never missed a workout.

We finally got word that our time had come.
We packed up the boxes, and said goodbye to our friends;
We loaded the cars and moved ourselves (yes, insanity acknowledged).

Our family came to help unpack boxes.
We set up the tree,
And settled in for the new adventure!

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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