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Thursday, September 30, 2010

9.30.10 - Happy Birthday Liam!!


On The Day I Had You
By Tara Johnson

On the day I had you
Only God knew
The path our lives would take that day
Trying to make everything ok

They told us that your heart was sick
And surgery would be the only fix
It seemed that moment could have been a dream
Because to me, you were the most perfect gift I’d ever seen
Away you went, your sweet little face,
The one I longed for, left alone in that place
The first night without you safe in my arms,
Left us wondering, How do we go on?
But then the Lord whispered soft to my heart,
He is mine, sweet child, you must let go of that part.

Prayer after prayer, we sat and we cried
Thinking of how we were going to be tried.
Hopes and dreams we had were all gone,
Replaced by the worry and fear brought by the dawn.
Over and over, we gave you to Him
Your will be done, Lord, your hands he’s in.
Family gathered round, we waited for the news,
Of how God, through surgeon’s hands, worked a miracle in you.
Joy overflowed, and with humble hearts we praised
Up to our faithful, loving Lord, we gazed.
Amazing grace, oh how sweet it’s sound,
On the day I had you, it was surely found.

Looking back, a tough road indeed,
But we walked the path with Jesus, we chose to take His lead.
Now you’re turning one year old, and I hope you’ll see
Jesus was there for you then and always will be.
We love you little Liam, you’re the greatest gift,
Happy birthday sweet boy, praises we shall lift!

You can read Liam's full birth story by clicking here.

We give thanks and praise for each and every one of YOU who have been at our side through this journey.  May God grant peace and blessings to you all.  We are in awe at how the Lord brought us to this day, and are looking forward to walking with Him the rest of the way.

Here is a glimpse back at Liam's first year!

video

Sunday, September 26, 2010

9.26.10 - Countdown begins! 23, 24, 25 and 26....


Tonight's post is going to be short and simple....I have GOT to finish Liam's 1 year announcements/invites tonight to get them in the mail tomorrow!  There are not enough hours in the day!

I think we left off at Thursday...We went to the Police Department for our outing.  I was a little disappointed, as we were not greeted by any cops, which I thought we would be...so, hence no pictures.  Boo....Oh well.  It was really just to do a nice something for them (took them a cheesecake), and obviously, they must have been busy that night =)  Did I tell you all that Dustin is taking the Citizen's Police Academy?  I am so proud of him for getting involved in our community.  We have also learned that we live in one of the safest communities around here....which makes me feel at ease!

Friday night was pretty fun.  My mom came and spent the night since we were hosting a baby shower for my sister-in-law (a post is to come on them soon....she is too cute, pregnant with TWIN boys!! We are SUPER excited!) We went to this old restaurant literally 1 mile from our house called Larry's Family Restaurant.  I had always begged Dustin that we should try it out some time, as it is always packed.  And boy it was yummy!  They had old fashioned steak fingers, which are hard to come by around here anymore....and they were just like the old DQ ones, maybe even better.  And they even have a drive-thru....I think we found a new favorite place!  Liam ate SO good there too...he had apples and chicken, and ate the whole jar, plus a little bit out of another jar...WOW!  Wish I could get him to eat like that at home!

Yesterday, while we had the shower at our house, Dustin took Liam to see his aunt and uncle and cousins.  Liam always has so much fun with them!  My sister-in-law Amber, took the picture at the beginning of my post and the one below...I just thought they were adorable! 

He really looks excited about eating here...too bad it didn't last.  Dustin told me he only ate about 1/2 jar....long sigh....I know he'll get there, but it really feels like we are backtracking...a LOT.  But, you never rush a heart baby, seems to be a trend among them, that they do things in their OWN time....another lesson in patience....gotta love it!

Today was church and then to my parents house to celebrate my dads birthday...which Liam happens to share....Oh, the memories of a year ago are already flooding back.  It was this exact weekend, one year ago today that I had my last baby shower.  Little did I know Liam would be born 22 days before his due date...and on my dad's birthday.  But that post is for Thursday!  Gotta wait til then - Let the countdown begin!

****Prayers needed for a couple of sweet and precious heart babies: Baby Joshua and Baby Ewan are both having a tough time right now and fighting for their life.  Please take a moment to pray for these little CHD warriors and their sweet families.****

Wednesday, September 22, 2010

9.22.10 - Day 20, 21 and 22: Therapy and Firemen

The future of Team Liam!

We laid low the first part of the week, as we received some discouraging findings Monday evening.  Monday, our new feeding therapist came to do her evaluation of Liam.  More on that in a minute.  Needless to say, Liam was exhausted after the appointment was over at 6:30, so we decided we'd best tube feed him and put him to bed.  Tuesday was a typical day with Grandpa at my parents house.  Dustin and I got in a much needed mini-date night at home before going to pick him up...it was nice.  I miss that.

And then today, we doubled up on outings!  First it was Sushi time with my good friend Jo and her son.  We dined at our favorite Sushi house, a normal meeting place for us.  It was fun - Liam always eats better when we are out (I think he does very well being distracted), so it was nice to see him eat a full jar of baby food for once.  I haven't seen him do that in awhile. Although, I am not doing a good job at sharing our Team Liam fundraiser, as I keep leaving behind the information when I go places...Dustin is a much better advocate!

After sushi, I cam home and whipped up some Sopapilla cheesecake (mistakenly a "fat free" version, which I had to apologize for not being the real thing!).  We went and visited the firemen at our local Fire Station.  Since we live on firetruck alley (the main route the trucks use to get to the freeway that is near our home), I know that they are some of the most hardworking men I know.  So we went to drop off some dessert and say thanks for all they do for our community.  Plus, we got a few good pics in front of the big red truck as well. 



So let me touch back to Monday night.  The feeding therapist evaluation of where Liam is at, as an oral eater, is a much more cautious approach than what we have been given since the swallow study was done a month ago.  Dustin and I really haven't had a lot of direction up to this point, as to how to progress his feedings and oral liquid feedings, because we have been trying this whole time to secure a separate therapist for just feeding.  His OT has mainly been doing the physical therapy part since by the time she gets down with that, Liam is exhausted and wants nothing to do with feedings.  So that said, we had been trying various bottles with water or juice, and at first Liam really seemed to be catching on and liking the bottles.  He would always cough some if he got to much or drank too fast, but we never worried because he always seemed to clear it and we never had a scary "aspiration" moment...or so we thought.  But lately he has wanted nothing to do with liquids.  We also started feeding him stage 3 foods and the baby yogurt puffs a few weeks ago, and again, he seemed to really like them and does fine with the texture.  But lately, he has not been interested in these foods either, except for the yogurt puffs, which we have to closely watch him eat to make sure he can handle them.

On to the therapy session.  She asked me all the background info and developmental questions....Is he babbling, is he sitting up well, crawling, walking, etc.....Then she watched me do an oral feeding with Liam.  He initially seemed hungry and excited at the yogurt I was going to feed him.  He ate few bites really well, then started to be a little protective of his mouth with his hands (normal for him).  The therapist then wanted to see how he was doing on liquids, so I got a Podee bottle with juice, but Liam was not having it.  She then suggested that I feed him liquid via spoon, which I had never done before.  So I did and immediately he started coughing after the first spoonful.  Then the second, he "definitely aspirated" and had a deep coughing spell, which made him very upset.  Not good....

Basically, we received the news I had been suspecting, that he is still aspirating liquids and is at about a 6-9 month feeding level.  She basically, in a very nice and supportive way, told me that everything we had been trying with Liam, was not appropriate for him based on where he is at right now.  Making steps forward suddenly went to taking big steps backwards.  We have been praying for Liam to be a complete "oral" eater since birth...I am discouraged, I'm not gonna lie.  But I also feel extreme guilt....I feel like I took risks with my sons care I should not have.  I am upset because I didn't know what I was doing, didn't ask enough questions, seek enough advice....when will this stop?  I am tired of navigating this without a map, even though one doesn't exist!  Monday, was not a good night for us.

The feeding regime for now is much simpler than before.  Tube feedings 4 times daily, stage 2 baby foods, and no liquids by mouth unless thickened.  The therapist is going to start doing Vital-Stim therapy twice a week, which I am anxious to get started.  I have heard really good things about it, and it has been something the therapist have been talking about doing with him since before his surgery.  We are praying that we can start moving forward again...

Sunday, September 19, 2010

9.19.10 - Day 16-19: Feeling better....

 
Last week was a little rough patch.  It's hard when our schedule gets thrown off, because it's hard to get back on the train again.  We are all finally feeling better, or at least Liam and Dustin are over there ailments.  I think I still have a few more days of recovery, now that I'm pretty sure I caught Liam's sinus infection....YUCK! 

Well, thinking back to the latter part of last week, Thursday we went by Texas Roadhouse and were going to eat dinner there, but opted to get takeout.  Liam fell asleep on the 2 minute drive over there, and I hated to wake him, knowing he probably really needed the rest.  And I decided to tweak my plan to go somewhere everyday to let Liam be our guide as to if and when we go.  His needs come first. So, Dustin went in while we waited in the car.  He also took in our Corporate sponsor information for Team Liam and told them about TEAM LIAM.  We hope to have a fundraising event with them - they are one of our favorite places to eat!

Speaking of eating, Liam is not quite doing as well as we would like.  I'm getting really nervous at each dr. appt we go to where they weigh him.  Luckily he hasn't lost any weight, but he has not gained in a couple months.  We are starting with a separate Speech Therapist this week who will solely be working with him on feeding.  On weekends, we are trying to cut out one of his tube feedings hoping he will be hungrier and eat more solid foods, but it is not working very well.  I think he has some aversion issues or maybe he is just becoming a REALLY picky eater, but I can't figure out exactly what it is.  Its frustrating, trying to navigate this...I am really looking forward to the therapy sessions.  If only, at least to get some encouragement....or a road map.

Friday, I worked late and we were all exhausted from the week AND had a big day planned for Saturday, so we stayed in and ate our leftovers =) 

Saturday was the big day, 10k/20k race at the Dallas Arboretum, the Tour des Fleurs.  We had a great time, I took stroller duty while Dustin ran the race.  We also had a few other TEAM LIAM runners who ran and did awesome!
 Our ride from the park where we parked to the Arboretum was on a school bus...Liam thought it was fun!


Liam with his buddy Amanda, one of our original TEAM LIAM runners

Amanda, Dustin and Matt - Go TEAM LIAM runners!  I failed to get one with my friend Missy, who was running the 20K that morning...they started 30 minutes before the 10K.

The starting line down below by the lake...and they're off!

The Arboretum was all decked out in pumpkins for fall.  It was so beautiful, so much to see....

 It was also extremely humid that morning and hot...

I think he was just happy to be out of the stroller for a little while!

They had all these little houses made of pumpkins...really very cool!

And with all the pumpkin watching, and trying to cool us off a bit in the a/c restroom, I didn't make it back in time to see Dustin finish his race...woops!  He finished sooner than I thought he would have, so I guess that's good for him though!

Liam fell asleep shortly after Dustin finished his race, so we parked it underneath some shade and hung out for awhile.  It ended up being a great start to the day!

And today, Sunday, we went to church.  Liam has been a few times before, and each time he gets more and more accustomed to other people.  Although, he has a tendency to babble a LOT during service, so for the most part we are in the cry room.  I like to think he has a prophetic gifting!  We love our church family and they have been so supportive to our family.  It really feels like a big family reunion every weekend.  I am so glad we are back to going again.

This afternoon, I worked steadily on Liam's birthday announcements...Yes, I am making them =)  We have big places to go this week, so I hope we all stay happy and healthy so we can visit these special people.  Stay tuned!

Wednesday, September 15, 2010

9.15.10 - Day 13, 14 and 15...Is it really THAT time of year...already???

Ok folks.  So as the days are getting shorter, I am reminded that fall and winter are looming, the germy season is approaching, and I am supposed to be stocking up on sanitizer and battening down the hatches (when I just googled "batten down the hatches", the meaning came up as PREPARE FOR TROUBLE...Yikes!)...BUT is the season already here??  I hate to say that our "outing" Monday was to the pediatrician's office, where Liam was diagnosed with a "small" sinus infection...He threw up twice Sunday at the grandparents house and then took on a small fever...didn't really think much about the vomiting (because it was instigated with coughing, from his sinus infection) UNTIL yesterday morning.  I awoke and my first thought was, oh no, I'm pregnant!  I haven't felt nausea like this since, well...almost a year ago.  Nope, I'm not pregnant (thankfully, at least for the immediate future), but man was I SICK....yucky sick.  So Liam's trip yesterday was back to my parents house to stay the day and night, out of the path of my destruction, so he wouldn't be exposed....I am still worrying if he is going to catch it...Today, my dad woke up with the same thing I had...Oh boy...At least now I am thinking Liam might have given it to us.  Or I hope so anyways.

So our little outing adventure got a little derailed this week, or rather should I say re-routed.  I am starting to get a little nervous about catching things, but then again, if he is in daycare, well there is just no protection strong enough really.  But in a weird sort of way, I do want him to be building immunities like a normal child would do...tough place to be.  We are very blessed that his immune system has been as strong as it has been, though.  He has not been seriously ill since his surgery, and that is a HUGE praise.  Although, I think our outings are going to need some tweaking...I didn't want to pull my plan B, but Liam's health comes first.  So, in light of that, we took an evening off, snuggled and cuddled, and stayed in tonight =)

Sunday, September 12, 2010

9.12.10 - Day 9, 10 and 11: Swingin, Eatin and Partyin!

Ok, so the post title sounds a little strange, but stay with me!  Thursday, we took Liam to the park for the first time.  There is one just down the street from us and I felt like he might actually enjoy it as it was somewhat nice outside that evening for once.
Lovin the swing!  He is so tiny in it!

Playing peek-a-boo with mommy...

Way up high!

Ready.... (yes, my legs ARE that pale...I told you we don't get out much!)

GO!

 I think mommy enjoyed that more than Liam...and he is so talented, his hand never came out of his mouth!

Short visit to the park...it's gettin dark!

Friday, we went out to EAT at a deli that I had never been to.  It was delish!  Liam always eats better when we go out somewhere...weird!

Ready to eat!

Annnnd, we're done.  Liam rarely ever cries, but he is starting to not like the idea of us taking things away from him.  He had just finished throwing his teething ring on the floor for the fifth time.  I was tired of cleaning it, so away it went....He got over it pretty fast, don't worry =)

And, yesterday, Saturday was a PARTY day! You remember Tucker, Liam's hospital roomie?  He had his 1st birthday party Saturday at Fuddruckers.  It was a lot of fun! 

Liam's favorite restaurant (or any table) activity....shredding napkins!

Liam and mommy....He was a bit tired.

Liam's first balloon...He wasn't quite sure what to make of it.

All the boys!  Happy Birthday Tucker!

And that leads us to today.  Liam has been coming down with a cold/allergies all week and has had a cough and stuffy/runny nose.  This morning, he was not feeling very well, so we opted not to try to go to church, which would have been our outing for today.  We are going to my parents for my sister-in-laws birthday this afternoon, so more updates later...Hope everyone had a great weekend!

Wednesday, September 8, 2010

9.8.10 - Day 7 and 8: Cozy at Mimi and Grandpa's and then hittin the books!



Yesterday, Liam's trip was to his Mimi and Grandpa's (aka my parents house) as he will be doing every Tuesday, taking a little break from daycare each week.  My mom and dad really miss him now that they don't see him all the time, like they did during the summer.


I think they actually have withdrawals....I know Liam does.  My dad came to pick him up yesterday morning and Liam's eyes lit up so big and his smile was so cute!  He has quite a special bond with Grandpa!


Liam is getting very social and his motor skills are progressing so much each day.  He LOVES clapping his hands, and in fact will do it on command when you say "Patticake" or "Yay!"...He even does it when he is tired to try to keep himself awake...it's probably one of the cutest things I've ever seen!  He is also waving bye-bye now on command.  He has always waved his hands a lot, but just in the past couple weeks, he started doing it every time we say goodbye to someone.  Dustin has even taught his little apprentice how to turn off the light switch!  And as far as eating goes, Liam is starting to eat chunkier foods and can even handle the puffs now - He is just growing up so fast...soon we will officially have a little toddler on our hands...as soon as he learns the toddle.... =)

Today, we took a trip to our local library for some good ole quiet time.  And quiet it was, because not 2 minutes down the road on our way, Liam fell asleep.  And stayed asleep for the duration of our outing...


Our town has a lot of these statues around town, and one in front of the library.  They are pretty cool and very well crafted, but I have to admit sometimes they are in some odd locations.

My selection:
Paddington Bear by Michael Bond
All Things Bright and Beautiful by Ashley Bryan
Your Critically Ill Child by Dr. Christopher Johnson
Curious Buddies DVD

I had a Paddington bear that I remember very well at my Grandma's (Liam's Gigi's) house when I was younger.  Seeing this book brought back so many memories for me!  And the Ashley Bryan book is incredible.  The artwork is breathtaking and the message is a wonderfully written praise to our Lord.  Curiosity got me to check out The Critically Ill Child book, as it looked interesting to me...And the DVD, well we already know Liam watches too much TV.  Might as well get him something different and educational to watch! 

Did I mention Liam slept the entire trip?  Even Dustin got a little cat nap in waiting for me....


It is such a peaceful and quiet place.  When Liam gets a little older, I hope to spend a LOT more time there!

I am loving these adventures...such memories being made...I LOVE it!!

TEAM LIAM Website UP and RUNNING!!!

Our TEAM LIAM website is officially up and running!

Please visit www.teamliam4chd.com for more information on running, sponsors, how to give and more!

You may also click the link on our sidebar =)

Monday, September 6, 2010

9.6.10 - Day 4, 5,and 6: Happy Labor Day Weekend!

Well I hope everyone had a nice LONG weekend.  We sure enjoyed ours!  We saw all of our SA family and had a great time!  It was Liam's first time to meet many of them. 

Liam's first visit (and our home base for the weekend) was to Nanny Schneider's house

Nanny, Liam and Freemon

 We had a little birthday cake!


Then on to see Grandpa Johnson at Red Lobster! 


Liam had never seen live lobsters....he ate some yummy Gerber lasagna instead =)

Sunday it was on to Nanny Johnson's house with all the cousins!  Actually, these are Liam's 2nd cousins I believe....

And then the drive home today....
 We stopped at the Pizza Pit in Troy, Texas.  Fancy schmancy, I know.  We had been taking back roads all afternoon to avoid traffic, and this was the place that came up when it was Liam's time to eat.  Thank goodness they were open, because we were HUNGRY!

We had a great weekend, but much too short as always.  I have way more pictures, but it's gettin late and I'm ready to snuggle into my own bed =)  Stay tuned for this week in our adventure traveling and for the new Team Liam website!

Friday, September 3, 2010

9.3.10 - Day 3: Does this count?

Starting off on our road trip, we were only 15 minutes behind schedule.  Not bad for first time travelers with baby-in-tow!  But, tonight my plans for Liam's "somewhere" had to be reconsidered,
so we chose to go here....


as Liam was....


Nighty night yall!!

Thursday, September 2, 2010

9.2.10 - Errand #1, to our favorite pharmacy!


Today's trip had to be an errand....with leaving for the weekend, I had to pick up Liam's Prevacid and get a couple items for the trip.  So, off to our favorite pharmacy we went, Walgreens.  Boy, have we made enough trips to Walgreens?  We used to go about once a week for awhile....meds, formula, diapers....you name it, we've bought it there.  Neighborhood pharmacy, here we come!  Liam just thought it was the coolest thing to ride in the cart (and don't judge me, I do have a cart cover that is VERY persnickety and I didn't feel like struggling with it for such a short trip....Eeek!  I tried not to think about the germs, so please don't think about them for me!).  It was only his second time ever to be in a shopping cart without being in his infant carrier.  Probably only his 5th or 6th time EVER to be in a cart....EVER.  He was having fun!

This is how we roll, mom!

It was weird taking pictures of him in a store....I'm so paranoid that the workers will come tell me I'm not allowed to do that.  I was dissapointed that the Walgreens emblem wasn't on the cart handles for my picture...oh,well.  Only our second outing.  Surely there is a learning curve for this, right?  And I didn't even attempt to try to fundraise.  This was a practice run of sorts.  Next week, we'll get down to business and get serious!

I also have to share a couple other pictures of this evening.  I sat Liam down to play with his toys, turned around for a second, and when I turned back around to him, he looked like this...

Yes, that is a puzzle piece, he is sucking on the handle like a pacifier...What a creative son I have! 

I'm glad he is not picky on his paci's...next time we don't have a clean one handy, Ill just grab a puzzle piece!


And last, but not least, look at our little champ sucking away on his sippy cup!  He is really doing very well with the oral liquids.  He is hardly coughing at all anymore, and is acting like he is really thirsty a lot.  We are making progress!

Wednesday, September 1, 2010

9.1.10 - Oh, the places we will go!

 
Today starts Day 1 of a blogging/family idea that I have had for awhile now. As most of you know, Liam will be turning 1 at the end of the month. Many of you know that since Liam has been born, we don't get out much....at all. Or at least hadn't until recently, having safely past his last surgery. Most of you also know that the germy flu season is quickly approaching and we will soon be limiting our exposure to the "outside" world again as much as possible (as I just got the call today from the pulmonologist office about renewing Liam's Synagis treatments for this season!). Lastly, we all know we are trying to raise $10,000 for the Children's Heart Foundation and thus are in need of SPONSORS!! So, what do all these things have in common? An idea we had to take Liam somewhere, new or old, everyday. 1 place everyday. We are planning on going to many local businesses in order to spread the word about our fundraiser and raise awareness in our community for CHD's, but also to some fun places we have been wanting to take Liam as well (or even on errands with mom, if time is of essence!). So let's get started!!

Today's choice was a no brainer. We chose Medical City Children's Hospital (MCCH), the place where Liam had both his heart surgeries, the place where his miracles happened. So, I whipped up my famous sopapilla cheesecake to take to our nurses and off we went. First, I will share an amazing view of a rainbow we saw while driving - I was sitting in the back with Liam while he was tube feeding, so I caught these pics of the awesome display




It went all the way across the sky, end to end within view...my pictures do not do it justice.  I could not get far enough back in the car to get the whole thing in one shot....just know that it was incredible!

MCCH just opened a new Congenital Heart Surgery Unit (in fact, they opened it one day after we were discharged back in June of this year).  They had a CHSU previously, but the new unit is AWESOME.  It's like something out of a Star Trek movie...very cool and VERY modern.  Although, I am glad we were just visitors this time around.





It was good to go back for a visit, but I hope we don't need to go back for a good long while!

We are headed down to San Antonio this weekend to take advantage of three days off, so it should be interesting.  It will be our first "trip" with Liam since he was born and the first time Dustin's side of the family gets to see him!  Stay tuned for our 1-a-day adventure!

And lastly, for some housekeeping....TEAM LIAM is moving along....we should have all the corporate sponsor information and our new website up and running by Labor Day!