Monday, November 29, 2010

11.29.10 - Season of frenzy

Oh, the holidays.  How I love thee...let me count the ways...

Christmas Cards
Giving them and receiving them!  Yes, each year since I have been married, I have handmade our Christmas cards.  I love card making and paper crafting (although mainly just card making) so I decided it would be a fun tradition to start making our card each year. This year will be my 5th edition.  Here is one of my favorites from a previous years....No sneak peak at this year's design though!  

Although I am not particularly fond of decking out my own halls, I LOVE to see other's homes and houses glammed up for the holiday season.  I am bugging my husband to put up lights on the house this year...It's just a great tradition, especially for kids.  I love that when we were little, my parents would take us for drives around a bunch of neighborhoods to see the spectacular light displays of all the homes. 

Cold Weather
Yes, even in Texas around this time of year it starts "gettin' chilly outside".  I love the cold weather, even if we only get a day or two of it between now and Christmas, it just makes the season.  I dream of a white Christmas, but those are a rarity around these parts....but I'll take any drop in temperature below 50 degrees!

And best of all...Of course you all know I LOVE my family.  I love the holidays because I get special time to spend with them, and I love that!  So many memories cling to the holiday season like no other time of year. 

There are many, many more things I love about the holiday season.  But unfortunately, my favorites are usually always coupled with things I don't really like about this time of time just FLIES so many things get crammed into the last month of the I often don't slow down enough to really ENJOY the things I love most about this season and how I seem to get caught up in things I seem to have to get done....Why do I do that??

This year, I am trying to really focus on not missing out what's really important....on not getting wrapped up in all the FRENZY this time of year can bring, but instead learning how to navigate this season with a to-do list of giving, humility, family and love at the top.

Thursday, November 25, 2010

11.25.10 - Giving Thanks

We have had a wonderful day of family, fun and food!  Dustin and I participated in the annual Dallas Turkey Trot this morning, and it was COLD!!  The cold front blew in just in time for race time, but we still managed to get going and run.  Then came our day of family and fun!  Compared to last year's, it was just as fun and memorable, but I did contribute a little to the cooking this year =)

I've thought a lot this Thanksgiving about what I am thankful for...and honestly, this post would be entirely too long if I mentioned everything!  My whole life is a perfect montage of thankful moments and memories.  God has orchestrated each minute of my life with such precision that I cannot help but be thankful for each precious moment that goes by.  Every time I look at my beautiful family, the ones here, far away, and those that have gone before us, I just get so overwhelmed by God's goodness and His grace.

Most of all, I am thankful for God leading me to this exact point in time, with those I love surrounding me and walking with me through this journey called life. Thank you to all of you who have been with us on this road, supporting us, encouraging us and offering your love and care for our family.

"So then, just as you received Christ Jesus as Lord, continue to live your lives in him, rooted and built up in him, strengthened in the faith as you were taught, and overflowing with thankfulness."  Colossians 2:6-7

Tuesday, November 23, 2010

11.23.10 - Pre-Thanksgiving feast!

This won't be a totally word-free post, but the pictures speak for themselves!  In my preparations for our Thanksgiving feast Thursday, I decided Liam would be a good judge for my sweet potato casserole...
Hmmm...this is fun....
and YUMMY!!



Sunday, November 21, 2010

11.21.10 - BIG milestone!

This morning something was telling me...Let's just make this a lazy morning and let Liam decide when he wants to get up.  Usually, I go get him about 5:00 am for his first tube feeding, most of the time he's asleep and will stay asleep until about 7.  He was waking up here and there, but no major cries, so I let him be, while I stayed in bed to catch a few last Zzzz's.  Finally, about 6:30, I was feeling guilty for possibly missing my window for his tube feeding, so I got up and and got it ready.  Well, when I walked into his room to get him, this is what I saw.....

Yes!  Liam SAT UP ON HIS OWN in his crib!!  I know this milestone should have normally happened around 6 months ago, but we have literally been working on this with our PT and very hard on our own for what seems like FOREVER with slow progress...this is the gateway for him to have the strength to be able to crawl and develop normally from that perspective.  I was just FLOORED!  He had struggled because of lack of tummy time, low muscle tone in his chest and some sensory issues with being on his tummy and knees.  Plus, he just wouldn't stay on his tummy to do tummy time, we think because of his tube.

I'm not quite sure how long he had been sitting up for, because we haven't worked on how to get back down yet!  I did check on him about 4:00 this a.m. and he was still laying down, so hopefully he wasn't up too long.

Just can't say how proud I am of our little man!  Go Liam!

Wednesday, November 17, 2010

11.17.10 - On the up and up

Liam is recovering well from whatever respiratory infection he had.  We still don't know what the test results revealed, but thankfully we seem to be on the other side of it now.  If only we can keep it this way for the next few weeks!

Liam is down to three breathing treatments a day and sounds better each day.  He is still getting wheezy whenever he is playing hard and gets out of breath, but no more coughing or congestion, so that is a good sign.  We also went through the entire weekend without any alarms from the oximeter going off, which meant Liam stayed above 90 throughout the night and for spot checks throughout the day.  All in all it seems as though he is on the up and up right now.

My dad is currently watching Liam for us while I finish out the year at work to help train someone for my job so I can stay at home come January.  We are so blessed to have someone close to help us out in this way, especially now that we are house bound with Liam again for the germy season.  We had no idea what to expect as far as Liam's immune response post his repair surgery, but clearly he is still very fragile.  I am already getting anxious about the holidays regarding the germs.  But I know above all, the Lord is even in control of germs and I'm praying that we don't have to sacrifice some needed time with our family in fear of them....but I will have our sanitizer ready!

We have very busy weeks ahead.  I have an appointment scheduled with a feeding clinic on the 29th that I am really excited about.  I have heard wonderful things about their program and it's an all-inclusive, intensive program.  I am at the point right now where I can tell Liam is ready to start oral eating more and drinking, but I am TERRIFIED to handle things on my own.  We have been introducing some puffs and a few bites of soft small table foods occasionally which he is handling great.  But I know I really need to work on the drinking thing, but I have NO idea where to even begin.  We only had a short month or so where we were offering Liam the sippy cup, but since then have stopped due to fears that he was still aspirating.  I feel really guilty for not moving forward with the thickened liquids and being more aggressive with his therapy.  But to be honest I am SCARED to even try anything.  I guess being in the hospital for suspected aspiration pneumonia is a cause of my worries....It is going to be great to have a new evaluation of where he is at and hopefully I can get the training I need as well!

We also have Liam's synagis on the 29th coupled with a check up with the pulmonologist to hopefully get a clearance for his cath that Thursday, Dec. 2.  And I'm not sure if I mentioned this in an earlier post or not, but we did get a chance to speak with the cath doctor, Dr. Lashus, for a while prior to his scheduled cath last week.  After having reviewed Liam's case, Dr. Lashus thinks that his stenosis will not require immediate intervention.  He said he would be very surprised if his findings revealed the need for an immediate repair.  Although he did say it is always a possibility because the Echo is limited in the details it can provide (especially for this particular issue), he said other cases similar to Liam's have been able to postpone intervention for a period of time, whether it be 6 months or a year.  He said the cath would give the cardiologist better information for a baseline comparative, so they could monitor Liam and decide when the best time for surgical intervention would be.  This was a blessing to my ears.  With all of this happening so close to the holidays, I was fearing we may be having Christmas in the hospital this year.  Although we know it is still a possibility, we are encouraged that there is a good possibility we have some more time before another surgery is needed.

Next week, we have the Turkey Trot run Thanksgiving Day as a precursor to the big marathon Dec. 5!  Team Liam has already been such a huge success as we have raised over $6,000 so far for the Children's Heart Foundation!  There is still time left to make donations - You can visit our website at for more info!  Thanks to all of you who have supported our cause!  T-shirts and jerseys will be coming soon!

Saturday, November 13, 2010

11.13.10 - Coming round the corner...QUICK!

Liam had a good night last night.  Slept through, only woke up a couple times, one which he got tangled up in the oximeter cord...Geez that thing scares me.  Let's have my child sleep with a long cord in his crib?!  Thankfully, no alarms went off except for the battery alarm, which means Liam stayed above 90% sats all night.  Praise God!

This morning has been uneventful except for his morning spit up he has been having the last few mornings.  I am assuming its all the drainage from overnight that makes him a little queasy after his morning feeding.  I can deal with that as long as he keeps tolerating his day time feedings, which he has.

They have already rescheduled the heart cath for Thursday, December 2....right around the corner.  I figured it would be pushed a little longer out, but I guess not.  The sooner the better for me though.

Speaking of right around the corner, Christmas is quickly approaching, which means a LOT of things around the Johnson household need to start getting done.  I worked on my annual Christmas card design this morning and I am really excited about it!  I just need a free hour to go to the craft store to get my supplies. 

This time of year also means the big marathon for Team Liam is right around the corner as well.  In fact, I started panicking last night because my training has been...well, it really has NOT been...Worst case scenario, I think I can at least finish...even if I am crawling on all fours by that point!  Liam has just been #1 for me lately, which is where he needs to be and the whole reason why we created Team Liam.  Our running jerseys have been ordered and the t-shirts have been designed...just waiting to get them printed and we are set!  We also have a generic design that we will be selling of BOTH the t-shirts and running jerseys year round for anyone who is interested.  I need to get it set up and the picture uploaded of what they will look like and then pre-sales can begin! 

Off to start on some laundry before the little one awakens...Happy Saturday everyone!

Friday, November 12, 2010

11.12.10 - Breathing treatments and updates...

The visit to the pulmonologist turned into a full day of testing.  Our visit started with a swab test for flu and RSV which thankfully came back negative.  Liam's O2 sats were down from 95 at the hospital to 90 when we arrived, so they were pretty concerned.  He also had a slight fever of 99.4, which was up slightly from his vitals at the hospital.  We received two breathing treatments in the office while the pulmonologist conferred with our cardiologist to get a game plan going.  So, the plan is to do 5 treatments a day for 4 days (1st day being yesterday), then drop to three times per day for the next week.  They also do not want his O2 levels to drop below 90 AT ALL.  Since we currently do not use a home pulse oximeter, one is being delivered today.  Liam is to be spot checked before and after his treatments during the day and then he is to wear it at night while he sleeps.  If it drops below 90 for any reason, we are to call the office and may have to be admitted to the hospital....UGH.  Their main worry is they don't want Liam hovering in the 80s and we not know it, which could put added stress on his already stressed heart muscles.  He is also taking an antibiotic, as they decided to treat him for bronchitis, since they do not know without further testing what exactly he has.

The pulmonologist then ordered us to go down the street (aka across town!) to Children's Hospital to get a virus swab lab done and a chest x-ray.  So after a quick stop home for lunch, a breathing treatment and a nap for Liam, we went over to Children's.  The virus swab was quick and easy, and then we had to wait quit a bit for the x-ray.  For the x-ray they had a very strange contraption they put Liam in, like a plastic tube around his body, which he cried like he was being tortured...that was not easy to watch as I had to hold his hands up while he looked at me with such scared little crying eyes....thankfully it was over in about 5 minutes.  We then had more waiting to get a CD (which I tried to look at on my computer, but it is showing as a blank CD....we'll see about that one) of the results for the cardiologist, since they cannot access this particular hospitals records....Ugh again.  Finally we made our trip home about 5:00 pm....ordered Chinese food...and went to bed.  What a LONG day.  But I'm glad we got him into to see the pulmonologist...We have GOT to keep Liam healthy the next few weeks so he can get the cath done.  I'm also praying his O2 oximeter does not go below 90!    It has not been delivered yet, so that's in our favor at least!

Thank you to everyone for all the encouraging texts, messages and prayers!  Will keep posting on our progress!

Thursday, November 11, 2010

Cath Postponed

We arrived at the cath lab at 6:00 this morning and just got home.  They had to postpone the cath because Liam is wheezing and coughing this morning, and they didn't want to take the risk with intubation and anesthesia. 

I can tell you how much I hate waiting....especially for some serious test results.  The not knowing part of anything just drives me insane.  So today's news just added that extra stress...but I am determined to keep my eyes fixed on Jesus and know that this is EXACTLY where He wants us, His timing for everything our life entails.

I scheduled an appointment later this morning with the pulmonologist so hopefully we can get some treatment or explanation as to why the wheezing keeps coming up like this.  I also just received a very encouraging call from our insurance case manager, who is working hard to get things taken care of for us on that end of things too. 

Thank you for all your prayers this morning.  Ill post another update tonight to update on the lung doc visit.

Tuesday, November 9, 2010

11.9.10 - River Moments

Renewed. Rested. At peace.

The weekend away had a great impact on me.  The time was there to reconnect with old friends and more importantly, God.  I have felt so distant for a really long everyone..."out of the loop" you might say.  The theme was perfect - Jesus Calling...and call me He did.

I wanted to share an "aha-moment" with you.  A true, God inspired and spoken word through my soul that resonated with me so profound.  It all started when a few of us decided to walk down to the river one evening....

The path leading down to the river was long, steep and rocky.  Passable, very much so, but with caution.  We started our journey about 6:00 pm Saturday night.  Still sunny out, it was a beautiful evening.  The walk down the path went pretty smoothly.  As we cautiously traveled the ground, careful not to stub our toes on rocks or slip on the more steep areas of the path, we ventured down, giggling and chatting, each of us with an excited anticipation of what was to come...of finally getting to see the river, spending some time with each other and stealing some sweet quiet time with the Lord.  I had expectations of meeting the Lord there, to soak in His grace and glory and let Him speak to me in the quiet.

We finally made it down the path, where the river stood, so quietly trickling by.  It was God's creation of beauty...symbolism at it's finest.  The six of us meandered for a small time together and then soon dispersed to our own quiet areas to explore, rest and reflect.  For me, this is what I had been waiting for...I had longed for a time like this with the soul was thirsty and I took time to drink and fill my spirit once again.  When I surrendered to Him my fears, His comfort and peace met me right where I was a precious time I will never was my river moment.

After awhile, we noticed the sun hanging low and shadows looming in on our path back up to our camp.  Time to go.  While I wish the stay could have been longer, or more frequent for me, I knew we had to start back before dusk quickly turned into the night.  So off we went on the long, steep and rocky path, but going up this time.  I never gave much thought about having to go back up the path.  One of my friends jokingly mentioned the rough time we would have trying to get back up, but I carelessly brushed it off, focusing solely on the expectations I had for my time at the river.

The walk up was tough.  Our legs burned, our faces grew red, our breath grew rapid and short.  Even though we all wanted to say we were making it up just fine, it tested and tried all of our physical strength and endurance to make it all the way back up.  For some, the edgy, haphazardly placed rocks were tricky to navigate.  For others, the looming shadows of the evening made it difficult to see the path clearly.  And still for others, it was hard to catch our breath at times.  We encouraged one another to keep pressing through.  We waited for each other to get their footing or catch a breath.  We took turns carrying one another's bibles and water bottles to help lighten the load.  Yet, we all struggled in our own way, to make it back up that path, back to our retreat.

We all made it.  Safe and sound.  Finally back to our camp site.  Back to the level ground and lighted road.  But it wasn't until the next morning, when one of my sweet friends shared how truly difficult that uphill journey had been for her, that the Lord spoke to me about it....

The Lord spoke to me and said, "You see, that uphill journey is your life."  We are all pressing through something....some paths are less rocky than others, have a little more light, are maybe a little less steep, but we are all on a path.  And the river...that is the God moments we have to cling to.  He is what makes the uphill journey worth it.  He gives meaning and purpose for our fatigue, for the sore muscles and lack of breath and the suffering.  We must drink from the Living Water in order to sustain ourselves for our journey.  And without stopping at the river, we have nothing to help get us back up.

The symbolism God revealed to me in that "river moment" was overwhelmingly awesome....He is still speaking to me new things about the relationship between the river and the path....He also revealed to me how He provides the fellowship we need with others to support us on our journeys.  Friends to encourage us when doubt and fear creep in,  friends to help carry the burden when we are weak and friends to point us back to Him when we lose our way.

On the eve of a week that is solely in the Lord's hands in regards to Liam and what the future holds for his heart, I found this to be my comfort, my peace - MY RIVER MOMENT to cling to in the days to come.  For every moment and every walk with Him is purposed and precious in the sight of the Lord.

Friday, November 5, 2010

11.5.10 - Off for some sweet time with Jesus...

I'm traveling today to go spend some much needed time away with Jesus and my precious sisters in Christ at a women's retreat.  I'm looking forward to being refreshed and laying my burdens at His cross...the last few weeks have been rough to say the least and I am weary.  As the next couple months hang in the balance with Liam and his heart situation, this retreat couldn't have come at a more perfect time...but then again, the God of all creation is always just that...perfect.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."  Matthew 11:28-30