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Saturday, May 29, 2010

5.29.10 - Blood donation success story!

Well, I didn't pass out or throw up like I expected I would. My blood safely made it out of my body and into the bag, and is now safely being transported to a hospital somewhere to hopefully help save a life...Feels great! I just want to thank everyone for supporting us. Even if you are not able to give blood, just knowing you are praying for us and thinking of us during this time really means the world to us.

We are enjoying a nice quiet weekend before the storm of the week hits us. Tomorrow, my parents are going to come watch Liam for us so we can go to church. I will be so excited when Liam is all better and we can finally take him with us! There are so many of our great friends and family that have yet to meet him...I can't wait!!

So as far as the plan for next week, Liam will officially be admitted to Medical City on Wednesday morning. We have to be there at 9:00 am and the heart cath procedure is scheduled for 11:00 am. I am not sure how long that will take - I am thinking probably an hour or two. Then sometime after that on Wednesday we will be meeting with our surgeon to go over the details of the surgery. We are praying they will be able to repair all of his defects with this surgery. As I understand, they will be building a new pulmonary artery conduit, new pulmonary valve and then closing the hole between his left and right ventricles. After this surgery, if all goes as expected, Liam's heart will function like a normal child's - his oxygen levels will be at normal saturation and he will not have to take any daily medication. He will only need a valve replacement every few years until he is full grown, as the valve does not grow with him. We will stay the night in the hospital Wednesday night and the surgery should be scheduled for first thing Thursday morning.

Liam continues to stay strong and healthy. He is sitting up like a champ - only falling over when he gets too giggly!! We are up to feeding him baby food 3 times a day and still giving him formula via the tube. The speech therapy and physical therapy will start again in July, so we are hoping that he can pass his swallow study by the end of summer and we can start the process of weaning him off the tube. What a life story our little guy is going to have...and so much in just the first year of life! What an amazing testimony... =)

Wednesday, May 26, 2010

5.26.10 - Johnson's Funniest Home Video

Ok folks. Here is a video we took last night of Liam and our cat, Karah. It's short, but we couldn't stop laughing at Karah's reaction to Liam when he got a little too excited...(oh, and be sure to turn the volume way up for the full effect!)

video


It's funny how we were all entertaining eachother - Dustin and I entertaining the cats, the cats entertaining Liam and Liam entertaining us...and to think that's what happens when you turn the tv off and have some good ole family time together!

Liam had a check-in with Dr. Verma today to make sure everything is good to go next week for the big day. Everything checked out fine, Liam is doing great, big, strong and healthy to boot! AND, Liam now weighs...drum roll pleeeease....19 lbs 10.5 oz!!!! We knew he was getting close to being a 20 pounder, but that is CLOSE! I think this answers my question as to when is it time to stop taking him places in the infant carrier! Time for a big boy car seat.

Just a little housekeeping issues on the blog...our old follower list has not been working for awhile. We have spent countless hours trying to get Blogger to fix it, but to no avail. Therefore, we had to upload an entirely new Followers app. I am not sure if our old followers have been receiving updates or not...so if you are wondering where you went on our followers list, no, we did not delete you because we don't like you, Blogger stole you and won't give you back....but please feel free to join our NEW followers list if it suits you =)

More to come later this week and/or end. I have a few new ideas for some interesting blog posts, so stay tuned!

Wednesday, May 19, 2010

5.19.10 - Milestone!

Liam can officially sit up on his own now! Last night, he sat up for a good 15 minutes without tumbling over, and today with my dad he sat for a good 45 minutes on his own....SO exciting! This is a huge milestone for us...We knew he was getting close, but it seems like overnight, something just clicked and today he got it!




Hooray for Liam!

I called to check on donations for blood and Carter told me that you can go to any donation location and give them the sponsor number or Liam's name when they get your information for the paperwork.  YEA!  So I'm going to IKEA Saturday, May 29.  They are holding a blood drive from 11:00 am to 4:00 pm....and if you have never been to IKEA, its a pretty cool place with good cheap food too! You can also check out Carter BloodCare's website and do a search for a blood drive near you or search for a Carter BloodCare center.  I hope you will consider giving the gift of blood...your donation will help save a life!

Tuesday, May 18, 2010

5.18.10 - Giving Blood 101

YAY! Liam now has an official sponsor number for donations in his name: 049476

You can also give his name and they can look him up as well =) The type of donation is called a "replacement credit". I am still unsure what locations these type of donations can be made it...If anyone has done this before and knows what to do, please let me know! I am going to call Carter BloodCare back tomorrow and ask if there are certain locations you have to go to or if you can choose a local blood drive, blood center or whatnot...I've already looked ahead at Carter BloodCare's blood drive calendar for events up our direction and it looks like there is a blood drive at IKEA on Saturday, May 29...That's the one I'll be going to if donations for sponsors can be given there!

I have never voluntarily given blood before, so I am already nervous about it. I have had blood taken un-voluntarily on more than one occasion and done ok, so I'm hoping it's similar =) It's nice to be a part of something greater though - to know I'm helping give back to what all we have been given.

I'll post more tomorrow when I get more details on the donating part and probably send out an email to everyone as well. Signing off for now... =)

Sunday, May 16, 2010

5.16.10 - New design!

How do you like our new look?  Dustin and I have been pouring over new blog themes....this was not our final selection, as Dustin is quite the perfectionist, so he is designing one especially for us (or ME rather).  However, I wanted a new look right away (as anyone who has known me and my hair choices, knows I like to change things up a lot!) so I choose this freebie to serve as a temporary upgrade until our final template is complete.  It's nice to have a change!

Speaking of change, Liam continues to grow and develop into quite the youngster.  Everyday is something new he is doing, giggling about or focusing on.  Right now, he has an infatuation with his feet.  Pulling socks off and giggling to tears when I stretch them up to his face...He has officially discovered the feet.  He is also rolling over - mainly from his tummy to his back.  Since he is not a big fan of tummy time still, he can roll from his back to tummy, but stops just short, almost as if he's thinking "Hmm, I don't think I like going that direction!".  We are working hard on sitting up still too.  He can sit for short burst, but then flails himself backwards and doesn't quite get the balancing of it all yet.  In my eyes, though, he is our little miracle.  The fact that, granted all the difficulties he has had, he is quite the normal child it seems on the outside.   Ahh, so much to be thankful for!!

As for his little flat head, well we are trying to go the natural route first and seeing a chiropractor for it.  I know, I know what some of you may be thinking....My mom and I were skeptics too.  But the doctor we are seeing is great, and was referred to me by a dear friend of mine, who I deeply respect and trust.  And of course, she was right.  Dr. Kristi is really great - gentle and caring.  She thinks that we will see much improvement on his head after about one month of sessions.  It's pretty amazing too, because I can already tell a slight difference on one side.  Plus, I think once Liam can sit up more and tolerate tummy time slowly, it will only help him.  The helmet is going to be my last resort.  I just don't feel comfortable putting him in one just yet, especially before we have exhausted all other options first.

So the countdown is starting...less than three weeks away til surgery day.  I'm already freaking out about every little cough and rattle I hear from him too.  Keeping him healthy and away from people is my number one priority right now.   I am trusting that this will be the Lord's timing for his surgery. 

I am also working on setting up an "account" at a blood bank so friends and family can donate in Liam's name.  Liam will be receiving blood transfusions during surgery, so I felt like this would be a tangible way that people can offer their support.  We get "credits" for every donation and it also helps to replenish the blood supply for future recipients.  Dustin and I plan on possibly giving a directed donation if we can, to where Liam will be using our donated blood during surgery.  I am going to try to set this up this week, so check back on the blog for details if you are interested!

Monday, May 10, 2010

5.10.10 - Wonderful 1st Mother's Day!

 
Well, seeming I haven't blogged in over a week, no news is GOOD news!  Liam is doing great, healthy as a bug right now and we are praying it stays that way the next few weeks.  I had a wonderful Mother's Day yesterday, with my family.  My parents and brother and sister-in-law all came over to our house for an early dinner.  We weren't able to make it to church, but I was able to pop by church last Friday (took a day vacation, poor grandpa was sick AGAIN!....He is much better now though!) to drop off some baby clothes and diapers for an outreach ministry they are doing next weekend.  It was great to see a couple of dear friends of mine and fellowship for a little while!

Liam's surgery is still set for June 3rd.  I am anxiously awaiting its arrival....but I have lots to do at work and home to prepare for my 2 week hideout in the hospital.  Keeping busy definately helps my mind from wondering about all the what-ifs...and boy do I wonder sometimes.  I'm the type who could mull over anything for days on end....thankfully, the Lord protects me from myself!  It is a constant struggle for me to surrender to Him my thoughts....but I realize, that is where my attitude stems from.  I can either surrender to Him and have a guarantee of peace or be left to my own spontaneous thoughts and never know what I'm going to get.  I think I'll be havin me some Jesus on my mind!

In honor of all the mother's out there, and especially those near and dear to me, "Heart Moms", I found this poem while on the Congenital Heart Defect Awareness blog and thought I'd share...Happy Mother's Day!

The Day I Became a Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

- Author Unknown


Sunday, May 2, 2010

5.2.10 - Back to life, back to reality...



Ahhh, Sunday afternoon is relaxing and uneventful...just the way I like them.  Liam has been recovering well at home and we have finally gotten back to almost a normal routine since being home from the hospital.    We had a few small aftershocks this past week.  First, on Monday, Liam was not taking his feeding well at all, so I started getting concerned.  He was coughing and choking everytime we tried to feed him and getting worse as the day progressed.  It was strange because he had done pretty well with feedings at the hospital, so it kinda came out of nowhere.  I ended up switching him to a soy based formula, which seemed to work.  I took him to the pediatrician Tuesday to follow-up with everything, and Liam checked out fine.  The rest of the week, Liam seemed to be doing better and better each day.  My dad, however, ended up getting really sick, so I was at home most of the week with Liam....What a ride these past two weeks have been for us.  

Liam was on in-home oxygen too last week.  Dr. Verma saw him on Friday and said Liam was doing fine, and his sats were coming up 70 after a short break from the oxygen, so he felt like Liam didn't need it anymore.  We rescheduled his surgery for June 3.  The heart cath will be done the day before, on Wednesday, June 2.  We are VERY ready for this to happen this time around.  The surgery should repair all of Liam's heart defects, so he will virtually be the same as a normal kid after this.


We are praying for a healthy next few weeks so we can get to surgery date!