Wednesday, March 30, 2011

3.30.11 - Happy 18 Months!

Liam -  Happy 18 months!

Dear Liam,

You are 18 months old today.   I am so proud of the little man you are becoming.  Everyday, you amaze daddy and me on the new things you do and say; and make me teary-eyed when I realize how quickly you are growing up.  We love you so much more each day, I didn't know it was even possible to love you more than I do now.  Three heart surgeries, one g-tube surgery, two heart caths and hundreds of doctors appointment, therapies and tube feedings later, you are truly our miracle, God's miracle. 

One year ago...first oral feeding!

You are so smart, Liam.  The things you can say at your age and say so well, like no, go, daddy, momma, hot dog, cat, walk, down, up, milk, keys and your probably favorite word right now - juice.  You are a wonderful communicator and we are so proud of you.  You know signs for more, eat, done and I am teaching you milk, but you always like to wave the other way!  Your little facial expressions, like your "Oh!" face are so cute and make us laugh and giggle.  You have picked up quite a few of your gestures from Grandpa.  Your hands behind your head when your relaxing is your signature "move".  Everyone thinks you are so cute when you do it, even total strangers.

You are SO close to walking on your own.  You take 3-5 steps towards daddy and I (and the furniture at times!) and are very confident.  Still a little wobbly, but it won't be long!  You love to be outside too.  Walking or scooting on your bottom, you love the outdoors (and have put a few holes in the bottom of a FEW pairs of pants while doing so!).  In fact, you go with daddy to the mail box everyday to check the mail and cry when you have to come back in.  When it's nice we go for walks and you just love it.  You are always pointing at your stroller saying "Walk, walk!".  

You are doing great on eating and again, we are just so proud of what a big boy you have become.  Your favorite foods are hot dogs,eggs, ketchup, cheese, fruits and veggies, lunch meat and goldfish.  You also have been drinking your yogurt milk like a champ since we started weaning you off the tube feedings and have managed to gain weight!  We are so glad we can finally cut back on the tube feedings, as your favorite feeding chair, the Nap Nanny, has quickly become no match for you and you have escaped from it's confines several times lately =)  We can really only tube feed you if you are asleep.  But at the rate you are going, we won't need to worry about that for long! 

You still sleep through the night and nap well during the day most days.  You take one nap a day, usually from around noon- 2 or so.  You always manage to fall asleep in the car.  No matter what time of day, if the trip is longer than 10 minutes, you'll be asleep by the time we arrive.  You love to "Go" in the car and LOVE riding in shopping carts.  Mimi and I love that you are a very well-behaved little shopper!  You also love going out to eat.  You are just so happy all the time.  We rarely hear you cry unless you get frustrated at something or fall down, and even then it is very short-lived.  You laugh at everything and smile and giggle constantly.  

Liam, your are one fabulous little boy.  We love you so much and are honored to be chosen as your parents.  You are a true blessing, our hero and our heart.  We can't wait to see what the next few months will bring!  Hugs and kisses sweet boy!  And Happy 18 Months!!

Your momma XoXo

Sunday, March 27, 2011

3.27.11 - Chocolate and WALKING!!

This weekend, Dustin and I attended a financial seminar at our church while Liam went to Grandpa and Mimi's.  We got some cute pictures of Liam eating chocolate pudding and finally got a good video of Liam taking his first steps! 


Wednesday, March 23, 2011

3.23.11 - WALK this way!!

Biggest update lately is....Liam officially took his first steps!  Granted it was a quick, 3 step "shuffle" so to speak, we think it definately counts!  He has been cruising so well for about a month now, walking with his push toys and pulling up and crawling over on everything, but he finally took some steps without holding on...Yay!  Of course, it caught us of guard completely, and of COURSE we haven't gotten him to replicate it again, so no video yet....but SOON I hope!

We have had a great week so far.  Liam is just really growing up so fast.  I feel like this is just a completely different year for us compared to last year...and it feels really REALLY good.  The weaning process is still going smooth.  I am a little anxious about his weight, but trying not to worry about it.  I feel his eating has increased since dropping the 2 tube feeds and he is taking on average between 10 oz to 15 oz of the yogurt milk by mouth daily.  I am encouraged and I am so proud of him.  He is days away from turning 18 months...where does the time go?!

Speaking of walking, we officially created a team to walk in the 1st Annual Heart Walk for It's My Heart in North Texas!  You can click the link here to go to our team page if you would like to donate or join the team and walk with us! 

Friday, March 18, 2011

3.18.11 - 5 years ago

5 years ago today, I married my best friend and the man of my dreams.  We met almost 10 years ago while I was in college and we have been together ever since.  Call it love at first sight, but I knew the moment we met that we would be together for a very long time.

One of our first dates!  Don't we look young?!

Dustin asked me to marry him on March 31, 2005 with a sweet proposal at my parents house (where I was living at the time while still in school!) and planned dinner afterwards with a couple friends to celebrate.  It was the perfect night!

Our engagement night
Wine bottle from our dinner on engagement night
 Less than one year later, we were married in a beautiful ceremony surrounded by our friends and family while it poured down rain outside.  It was again, the perfect day.

And I must say, it has been a" Happily Ever After" ever since....Love you honey!  Happy 5 year Anniversary!

Tuesday, March 15, 2011

3.15.11 - Super shake!!!

I've had that phrase in my head all day...I think it's from Team Umizoomi (is it indicative of how much we Liam watches TV? I know, I know...)....and I also think they say super SHAPE, but I like shake better!  And speaking of shake, Liam had been drinking up his smoothie shake very well lately and I'm glad to say, we are still on only two "formula" tube feeds a day -YAY!

We had a big milestone this weekend, well more a milestone for Dustin and I.  We attend a small, family sized church and have started going back the past 3 weeks, taking Liam with us.  One of us sit in the cry room each time with Liam, because, well, he's a 17 month old!  Anyways, while we do not mind it, I had been contemplating trying him out in the nursery.   Since there are never more than a few children in there, I felt like this weekend was a good trial run.  So, we put Liam in the church nursery for the first time!  My number didn't come up on the screen to go get him, so all went well!  They said he cried a little at first, but was mostly really good.   It is such a blessing to attend a church where we know everyone and they know Liam and our situation.  The teacher this weekend was one of the ladies in my bible study and I knew she'd take good care of Liam.  They all just love him so much and I am so grateful for that.  I think Liam had a lot of fun too, and I think it's important he start socializing around kids his own age.  This was a perfect fit!

While we are still being cautious about where we take Liam and when, but we have tried to start getting out of the house more.  I've taken Liam to the grocery store a couple times - with LOTS of antibacterial wipes drenching the cart!  And I just choose to go during the day or when I know the stores won't be too crowded.  We have also been out to eat a couple times and I love it because Liam always eats SO good when we go out.   We've also been going on a long walk everyday since the weather has been gorgeous here.  I LOVE this time of year!

Speaking of the grocery store, I started playing the Grocery Game.  Basically, it's a website that matches up coupons from the weekly paper with the store sales that will save you the most money on the things you buy.  I think I'm addicted!!  It's amazing how much money we have saved and how much our pantry is getting stocked!  I am planning on donating every month to a food pantry with our excess.   Unfortunately, the game isn't free though, just doing the free trial right now.  But I'm learning tricks of using coupons that eventually I think I could do it myself.  I actually got my first "free" item this week!

Sorry for the mis-mash of ramblings!  The rest of the week we have 2 therapy appointments and we had a helmet appointment yesterday.  Good news...his helmet comes off in 4 weeks!  YAY!  We are meeting with a PT for the first time tomorrow and our ST on Friday.  And then next week, we meet our Developmental Specialist therapist and hopefully with the OT again...whew....Liam will have 4 therapist!  Hope we can balance it all!  Our goals are to get him off the tube and get him up and walking...we'll keep yall posted!

**** Prayer request:  Please pray for our heart friend Aly.  She is having her Fontan surgery tomorrow.  *****

Friday, March 11, 2011

3.11.11 - Friday feelings

It's been a fairly uneventful week and I am very happy about that.   The biggest happening around here is I decided to give up caffeine for Lent this year.  So I guess you might say Liam and Dustin may have another word to say about the latter part of this week! Ha!

I weaned myself off caffeine about 8 years ago, and pretty much didn't have but maybe a few sodas here and there.  I actually had pretty intense heart palpitations that started happening, one time so bad it landed me in the ER.  After that, I went cold turkey because they told me too much caffeine was probably to blame.  But, after Liam was born, with all we were given along with that (aka hospital life!) it became my survival drink of choice.  Now that we are hopefully in a quiet place for now, I have decided once again to get back off.  Remembering the actual physical withdrawals I went through the first time, I planned on not doing much these past few days.  And I'm glad I planned it that way.  My immense headache has finally settled down a bit and I'm finally feeling like I don't want to nap every 5 minutes.  It's crazy how much it affects me. 

I read an interesting article today that It's My Heart posted on their Facebook page - It's about a study done that looks at a mother's use of multivitamins in relation to babies with certain heart defects.  I honestly haven't done a lot of research in the pre-natal causes of Liam's CHD, nor am I saying this is the cause.  But it did make me think.  Honestly, I have NEVER been a good vitamin taker, and to get those horse pill, pre-natals down (and KEEP them down!) was just a chore to me.  I did feel like they were overrated and yet another way for retailers to make a buck on different blends and brands, so I wasn't very vigilant in taking mine.  And since I wasn't exactly planning on getting pregnant so soon, I had not started taking any vitamins prior to conception.  I think this study was a good one for me to read.  I'm going to take it more seriously next time around.

Speaking of It's My Heart, they are teaming up with Lake Dallas High School and sponsoring the very first annual HEART WALK in Corinth, TX.  It's Saturday, April 2 and the walk begins at 10:00 am.   I'm sure the weather will be wonderful, so you can register here and come out to support us!  We set up a team for anyone who wants to walk with us, Team Liam.  I'll also bring Team Liam t-shirts for all of us to walk in.

I finally got a chance to catch up on reading my heart friends blogs today.  Two of the special heart warriors I follow, Andrew and Joshua, are recovering from their open heart surgeries.  It just breaks my heart to watch these precious children suffer through surgery and the aftermath.  Another heart friend, Aly, is having her surgery next week.  Please be in prayer over these families and drop over to their blogs to leave them a message of encouragement!  We have been in there shoes and know how much it means for people to be praying for us!

And last but not least, here are some pictures to brighten up the week!  Happy weekend yall!

We love the laundry game!

I think we have about 5 of these mugs...Medical City, our home hospital!

What a big boy he is turning into...Love you my Liam!!  (Oh and the stain on the front of this shirt is his yogurt juice!  He's been drinking it down really well, and getting it everywhere!)

Monday, March 7, 2011

3.7.11 - Family and Feeding Updates

It's been awhile since I've posted about our happenings =)  Everyone is doing great.  Thankfully, THANKFULLY we have all managed to stay healthy this cold/flu season.  Although we are still limiting where Liam goes, we have lightened up a bit and we have tried to take him on a few outings each week.  This past week, we ventured out to the local thrift store, as I am in search for a new dresser for my entryway.  Now that I am home all the time, I am just ITCHING to re-decorate.  But given our new budget, I have to find creative (= very cheap) ways to spruce things up.  I also re-discovered my passion for art and design and have some new ideas I will be sharing very soon!  Just need a trip or two to the craft store to shop the sales first!

We also took a trip to the Gymboree outlet to spend a gift card from Christmas.  It was nice to get out and feel like part of society again, but the weight of "sickies" being so close to home really still freaks me out.  I am trying to just play things smart, but not be too over the top and get frazzled about it.  We went out to dinner at Olive Garden afterwards.  Having a now toddler on our hands makes things interesting when we do go out.  Liam still cannot walk yet, but always wants to get down.  Makes it challenging to hold on to him sometimes, because I will not let him just scoot around on many floors!!  He ate really well, as he usually does if we go out to eat.  I guess he doesn't care for my cooking much! Ha!  He ate a ton of pasta and veggies from my minestrone soup and tried some pizza and alfredo noodles also. 

As far as Liam and his eating, he is doing really well.  In fact, we are on day 3 of trying to wean him off of the special formula he is on for tube feedings.  Prior to this, Liam was getting 4 tube feedings of 5-6 oz plus 4 solid meals each day.  His tube feedings consist of a specialty formula called Vital Jr.  It is made specifically for tube feeders, is high calorie (30 cal/oz) and is similar to Alimentum in the fact that it consists of very broken down proteins that are easily digested.  Up to this point, Liam has seemed to have an intolerance to anything except clear liquids and Alimentum through his tube.  We are not quite sure why, but we think it is because he doesn't process it through his mouth with extra saliva and his gut wasn't able to break other formulas down enough to digest.  Oh, the theories on the tube...I have so many! 

I met with a dietitian on Friday who concurred with our decision to try to wean Liam off the specialty formula if he can start taking in enough calories by mouth with food.  And since Liam is tolerating a wide enough variety of table foods by mouth, we thought we would see if he would increase the amount he took in by mouth, so we could possibly eliminate the special formula (but keep him on liquids like juice and water through the tube for hydration until he can start drinking everything by mouth too).  Two reasons for weaning off formula: cost being the main one.  It is about $7 per 8 oz bottle for this stuff....we were using about 4 cans a can do the math and quickly see this cannot last long without bankrupting us.  Now, if Liam truly still needs this, we will find a way to provide it, but our thinking is that it is unnecessary.  I have been researching a lot about the blenderized diet for tube feeding, i.e. making your own "formulas" using all natural foods blended up and put through the tube.  Due to the extremely high concentrate of sugar (and who knows what else) in the manufactured formula, I just think long term use cannot be very healthy and I knew from the beginning if Liam was ever on tube feedings for a good length of time, I did not want him to be on the "formula".  So, here we are.

So the plan is to stop 2 of the morning tube feedings of formula for 4 days, replace the equivalent fluid with water or juice and see if Liam increases his oral eating to maintain the calories.  He is doing OK, not quite the surge in hunger like I was hoping, but not bad either.  I have actually started giving him a thickened whole milk/yogurt blend for him to try to start taking out of a sippy cup via a straw, and he is doing really good with it.  No aspiration signs to speak of, although it is pretty thick!  I think this should help compensate a little for the lack of calories via eating hopefully, plus help with his swallowing.  We will monitor his weight at home, and we have his 18 month well check coming up at the beginning of next month also.  Currently, he is weighing in at 24 lbs. so hopefully he can at least maintain this.  If at any time, his eating decreases significantly we can always re-institute the formula.  So that's the plan for now!  Praying that it works!

I am excited about this new change.  I feel like we are finally making progress towards one day being tube free.  Liam's tolerance to this change has been very encouraging so far, so I'm praying he continues down this road.   On top of the ST services he is currently getting, we will also be starting 2 or maybe three new therapy services soon (OT, PT and Developmental Specialist from ECI), so I'm hoping with 4 people working with him each week, he shouldn't be too far off from catching up. 

Here are some more recent pictures!
Cruising along all the furniture now!

Do you see his little curl coming out of his helmet?!  He is finally getting hair!  More like a mullet right now, but hair is hair!

Posing for the camera!
Always up to something!!

Thursday, March 3, 2011

3.3.11 - The Battlefield

This song was playing the other night in the car while I was driving home from bible study...

I suddenly found myself  weeping.  Finally, after a crazy past year, a sense of peace so profound came over me that I couldn't help but shed tears. Praises poured off my lips, as I wept and thanked God for bringing us through everything we have been through and thanking Him for being the one to carry us through whatever will be in our future.

As the tears kept flowing, God revealed a "battlefield" illustration to me that helped me think about what we go through in our trials.  I thought about the battles we had partaken in, and I thought about what our role is now that the battle is temporarily at pause, at rest.  However, I also wept for those warriors I know awaiting their battles, and those precious fighters on the battlefields at this very moment.  I thought about how many are returning home with a victory and how many have returned home changed forever.  My heart is heavy and tender for them.

Some of you may know that before Liam was born (or even conceived for that matter) I had the sense that God was preparing me, "equipping" me, for some unknown trial.  I had the sense it would be bigger than anything He had ever walked with me through and that I needed to trust Him.  I enjoyed that "preparation" time with the Lord, learning new truths about Him, His character, His love.  I craved sitting at His feet.  It was safe.  It was peaceful.  I finally came to my own conclusion that something was going to happen to ME.  That I would be the one to suffer.  Little did I know, it was even bigger than that, as it came as suffering in my own child.  I can honestly say when I realized this was the "something" He had been priming me for, I was angry.  Why not ME Lord?  How could you place this kind of suffering and pain on my innocent child?  I had no idea the battle he was preparing for me to fight.

Looking back I realize that He chose Liam so there would be no doubt He has carried us.  Not me, not Dustin, no one else but Him.  He lead us into every battle and fought alongside us, for us and beyond us.  I believe He also chose this to take my focus off of myself.  It's not about me, it's about Him and through Liam, He revealed many things to me about Himself.  Focusing on Liam forced me to focus on God.

You need a time of rest, to be renewed and strengthened.  A time to grow more of My promises in your heart so that you will be well-equipped for the next battle, the Lord spoke to me.  I feel like I am definitely in that season of my life right now, and honestly I've really missed it.  Although His words to me indicate another battle is always imminent, His presence is always there to overcome.

    "As for God, his way is perfect: The LORD’s word is flawless; 
    he shields all who take refuge in him.  For who is God besides the LORD?
   And who is the Rock except our God? It is God who arms me with strength
   and keeps my way secure. He makes my feet like the feet of a deer;
   he causes me to stand on the heights. He trains my hands for battle;
   my arms can bend a bow of bronze. You make your saving help my shield,
   and your right hand sustains me; your help has made me great"  Psalm 18:30-35

Please be in prayer for the following little heart warriors:
Andrew - Surgery on March 10
Aly Jean - Surgery on March 16
Joshua - Surgery first of March
Bowen - Recovering from surgery.