Sunday, May 24, 2009

Noah, Beckham, and Evan

I was told it would happen. I didn't ever think it would and it seems that is has.

Life has gotten to a point post-transplant where I don't have to blog every day to keep you updated on things. But I am SHOCKED that I went two whole months this time. It's a wonder anyone even reads this blog still. I do hope that I still have readers. Because as I get things mended in my own personal sphere, I plan to revamp Noah's Adventure a bit. I have a lot of ideas in the works.

But I digress.

A few posts back I wrote about how I took Noah into the Peds office but had to see a Doctor we were not familiar with. She said sounded okay. Then I took him to our PCP's office since I was going to be there anyways. He said Noah sounded ucky but to wait it out. If it wasn't better in a few more days then call and he would give him an Rx. Which we did. It cleared up his runny nose right away. But that darn cough and raspy breathing were as bad as ever.

A few days later, almost on a whim, I took him to an Urgent Care. What I wanted was an X-Ray of his chest but I didn't want to drive all the way to Primarys to see the Ped then have to go to Radiology... YaDa YaDa YaDa.

The Dr listened to him and was surprised he sounded so sticky and rattley. And sure enough, the Chest x-Ray showed pneumonia. So poor little Noah got two yucky antibiotic shots. One in each leg. Then he was on a 10 day course of oral antibiotics. Sure enough, that stuborn cough went the way of the high way. But if it hadn't of been for that cough I never would have know he was sick. He wasn't acting sick at all.

Now I'm starting to have my suspicions on how long he really was sick though. Cause right now, this kid is eating like a CHAMP!! Which he has never done. He still gets his bottles here and there but his main nutrition is starting to become FOOD.

He is also trying to communicate better. In the sense that he's realizing that there is a way to show us what he is thinking or wanting. Whether it be words (ma, da, pu aka for puppy), gesturs, grunts, pointing, or even throwing a fit until I guess the right answer. It's all wonderful because it means he is starting to understand that there is such a thing as communication. There is a way for Mommy to understand!!! YAY for both of us!

He's isn't growing much or gaining weight but he is starting to look different. Outgrowing the baby look and change into a toddler look. I see his face change every day. I need to take and post more pictures. Because he really is the cutest and sweetest thing. He still gives tons of kisses and hugs and now that he says Ma he says it all the time. He likes to come over to me and point to me and say Ma over and over again so I don't forget that he knows who I am. I LOVE it!!


Our sweet dear family the Scadlocks are having a rough go of it right now.

I've posted in the past how Beckham had clotting and bleeding problems referred to as ITP. (I as in Idiopathic because no one could figure out the cause.) Well, he recently developed a new symptom. Kool Aid blood. Seriously, it's not really called that. It just looks like it. Now, in addition to his platelets being affected, now his red blood cells are being attacked. (Sort of like being DEATHLY anemic.) I'm sure I am total butchering this description. So you would be better off heading over to Our Baby Beckham to read it straight from Nate and Kim. But in short, he has now been diagnosed with a very rare and chronic condition called Evan's Syndrome.

Evan's Syndrome is so rare that there really isn't too much information out there in relation to a Pediatric Heart Transplant patient with Even's Syndrome (ES). So the Dr's have their hands full trying to figure things out and tracking down experts in the fiels of ES. As of now, Beck is back in the hospital. He has had several blood transfusions and is now on IVIG and high dose Steriods.

The Steriods are giving Beck some major Roid Rage. Kim says he scowles and "baby cusses" (not real cuss words) at everyone who walks past him. Ordering them around and being all grouchy.

You know, seeing Beckham going to through SO MUCH. . . and his poor family. AARRGGHHH!!! Beckham was born right after Noah. They both went through the same things. They are both strong little fighters. It created such a special tie to the Scadlocks for me. I love that little guy like my own son. It pains me that they are so far away and I can't help. It breaks my heart to see him so sick. And as a mother my heart breaks for Kim. Who is torn between caring for Beckham and caring for Gwen. Not to mention how a mommys heart is pierced every time her child is sick let alone super sick and needles involved.

Kim and Nate, if you happen to read this, please remember that we love you. You are not only our Family Family (I don't care how distant, it's still family) but you are also our Heart Family. We will do anything to help you through this time. (Kim, my invitation is an open door.) We are praying for all of you. May the Lord give you the comfort and the strength that you need to accomplish was is set before you. And may the Doctors be inspired in the correct course of actions to take to get Beckham on his road to recovery... and hospital free for a long long time!!

And to my Dear Constant Reader: Please send good thoughts, vibes, what ever it is you do, to the Scadlocks. If you pray, please shower Heaven with prayer on their behalf.

Beckhams bruises caused by his ITP


  1. Poor Beckham! That looks miserable! I've never heard of Evan's Syndrome. I hope they can find what they need to get him better and soon!

    I loved seeing you and your cute little family in church today! You all look so good! Just a thought with Noah.... have you tried sign language with him? I'm surprised at how much Abbie has picked up and we don't watch the videos very often! He sure is a cutie though! I'm glad he's feeling better!

  2. I am glad Noah is feeling better and is eating good. We will be praying for sweet Beckham!

    Hugs & Prayers,
    Jacob's Momma

  3. Crystal,

    Seriously...thanks so much (I know that sounds lame, but I mean it)! We love your family so much and don't know what we'd do without you. You have been with us from the beginning and it means so much to have someone that understands what we are going through. I know that we will get out of here soon and Beck and Noah will get to play and be the crazy little terrors that they are. Soon!

    Love ya!

  4. You are all so strong, I admire you so much. I read these blogs and I can't imagine dealing with the stress, the worry, and the pain. God must know how weak and lame I am. I will, as always, keep you guys...and baby Beckham in my prayers!!!

  5. Thank you for sharing this story, I have been following this sweet boy Beckham's journey and praying daily. Your son is a doll too.
    God bless you.


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