Happy Birthday Noah!

My Sweet Boy,

Oh how Mommy loves you. It's been two years since you entered my world and it's been the best two years. While times haven't been easy for either of us you have brightened my world and taught me more about being a mother than I ever could have imagined.

You give me loves and hugs and kisses. You have taught me about faith and hope and sacrifice. You make me laugh. Every single day you make me laugh.

You are brave, my little one. Don't ever lose that. Continue to face every challenge in your life as if there was never an option to fail. Remember to find humor in the simple things and you will always be able to keep a smile on your face when times are hard. Most importantly, give thanks to your Heavenly Father every day for the blessings he has blessed you with. You have been a miracle in the lives of many and have been given so many blessings already in your life. If you remember that all that you have been given is a gift of a loving Heavenly Father, he will continue to guide you through your journey on this earth.

These are things that you have helped teach me from the moment you took your first breath. I am a better person because of you. You are my hero, little one.

Never forget that I love you more than words could ever say and I always will.

Happy Birthday my Heart Warrior. Love is the reason you're here.

Your Mommy

Clinic Check Up

Noah had his first clinic appointment in 4 months today. He passed with flying colors.

Everyone was pleasantly surprised at how good he looks. His hair stealing the show as usual though.

When we got to Primary Children's Hospital Noah seemed to get a little anxious as we walked in. All it took was walking past the lab to start the melt down. This continued on for some time but luckily he calmed down enough while looking at pictures on my BlackBerry for him to get a good echo done. Probably his best in a while since he's cried through the last few I remember.

The echo results looked good, his Dr check up looked good, and we'll send his labs to Denver on Monday. So we are set for another 4 months. Except we'll cut it short and make our trip to Denver in August for his Cath.

So, just a quick update. But I thought I would pass along the good clinic news.

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!!

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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

Knock Knock

I'm knocking on wood.

I think Noah's nose may have ceased leaking for the first time in almost 3 months.

He had been sick for so long I was starting to worry. Being immune suppressed and having a donor heart can make for a less than stellar combination when mixed with nasty viruses and bacteria.

The diarreah? Still visiting. It doesn't ever go away. It just gets a bit better. This kid has had 3 non-liquid poops in his entire life. I went back to soy milk after 2 bottles and his foam poop cleared right up. I think it's the extra fat in the dairy that he can't tolerate.

He is making great progress on his speach too. He isn't saying more words really but you can see his desire to communicate and he tries. He surprises me each day with how much he really understands.

Today I tried to lay him down for a nap without giving him a bottle first (he gets several bottles of soy and carnations each day to make up for the food he won't eat). He adores his bottles and this made for one very upset and tired little man. He instantly started crying and saying Ba. I told him I would go get him one and he immediately stopped crying (for being able to instantly turn it off he sure sounds like it's a real cry). When I came back I asked what he had done with his binky and he point to the small space between his crib and the wall. I can't reach back there and I was frustrated. "Noah, why did you throw it back there?", I said. He looked at me, shrugged, and grunted something that really sounded like "I don't know." I chuckled. I couldn't help myself. When I picked him up to sit in the chair for his bottle, he raised both arms above his head excitedly said "Ya!".  I tell you, he surprises me more everyday.

When he woke up from his nap, Lilly was in the bath tub. Some how I had the misguided idea that he could see water and not insist on getting in it.  He immediately proceeded to try and take his clothes off while saying baa (for bath) over and over. When I wasn't quick enough for him, he let me know it.

He is doing ordinary toddler things and yet they are so extrodinary in every way. I can't help but see everything he does as a miracle. I'm sure he doesn't mind when he gets away with being a stinker.

Sick and Sick of Winter

Noah has been sick since January. He just can't seem to shake it. It flares up, gets a bit better, then flares up again. We finally did one round of antibiotics last month and it helped enough to turn his snot from green to clear again but his poor nose is like a broken faucet. It runs and runs and runs.

What's weird, is that it seems to get worse after his synagis shots each month. This past week he got his shot on Monday. Tuesday morning he was sicker. By Wednesday morning, he was having such a hard time breathing that I hooked him up to his nebulizer and the pulse ox. His Oxygen saturation was about 89 and that's with very fast labored breathing. So I called the pediatricians office. Dr. Samson-Fang wasn't available but the nurse, Diane, said it was best to come in. So up to the hospital we went. Since we did the breathing treatment before we went, by the time we got there he was back up to 95. We saw a Doctor we have never seen before but she said he didn't sound like he had pnemonia and his ears were clean. So she sent us home.

It seemed like a wasted trip because he still sounds so awful when he struggles to breath that I have a hard time believing he doesn't at least have bronchitis. But, I also have a hard time trusting just any Doctor when they aren't familiar with Noah's status as a medical enigma.

Either way, we are doing his breathing treatments several times a day to help him breath. I also had to put him back on the oral Gentamyacin IV since his super stinky diarreah came back too.

Even though this has been a rough winter full of hard to kick germies, we really are very lucky and blessed. The germies we've had have been manageable from home. Our sweet Heart Cousin Beckham has been in and out of the hospital with low platelet counts. It's so bad, that he is now back in the hospital indefinately until they can get it back to a normal level. It's just too dangerous for him to be away from the hospital since he bleeds so easily and it doesn't want to clot. The poor little guy is covered in bruises. It breaks my heart!! Please keep him and his family in your thoughts and prayers.

A New Word

Noah finally said (with some prompting). . . Ma!

It sounded like musical gold. He has only said it twice since then and both times with prompting but that's fine with me. He has to start somewhere.

Tomorrow I am taking him up to Primary Children's Hospital to meet with an Orthopedic Specialist to see about his leg turning out. His appointment is at 8am. They called and asked me to be there 15 minutes early. They claim for paperwork but I know better. The clinics don't even open till 8am. They just don't want me to be late. I don't blame them though. A 30 minute drive that early in the morning... if it wasn't for my insomnia and waking up super early lately I might actually be worried.

He's Out To Get Me

If only I was joking.

Noah is out to get me. He is secretly (or not so secretly) planning my demise.

He is not even two (almost 21 months to be exact) and this kid already knows all about trouble. I don't know if it's because he is making up for being bedridden in the NICU and CICU for so long or because he's just a boy. I am sure that Lilly was not like this though.

Here is a small example of what the menace was up to today.

I find him in the living room. He has removed all the pillows off the couch, climbed up the back of it and is standing on the window sill, clutching the blinds that I have raise way above his head, as he licks (yes, licks) the window. I get him down. As I fix the pillows I hear a noise in the kitchen and then a crunching rapidly moving down the hall way. I go to Lilly's room to find Noah sitting on the floor with a bag of Doritos that he got out of the LOCKED pantry cabinet. I take the chips from him that then results in a screaming tantrum. As I put the chips away the screaming stops. I go into the living room to find out why, and find Noah standing on his tip toes grabbing my purse off the table and pulling it down.

One thing after another. Add to that no nap and 45 minutes of non-stop screaming while I was hoping he would fall asleep and you have one tired, worn out, and frazzled mommy.

I told you he was out to get me.

But I have to add a side note. As much as I would like to leave it at that and try and invoke some fellow mommy sympathy, I just can't. Because every time this little monster tries my patience or runs circles around me, I can feel nothing but complete gratitude that he is here to run circles around me. There was many moments when I didn't know if I would be blessed with such a pleasure. So even when I am tired and frazzled, I can't help but remember that I wouldn't have it any other way.

My life is so very blessed.