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.

Praying For Gracie!

Baby Gracie is 11 months old. Today she was listed for a 2 Heart Transplant in as many days. The first heart she received didn't start beating properly after it was transplanted.

This little girl has been through so much. She is now on ECMO while we all pray a new heart will come quickly.

Please pray for her and stop by her blog. I'm sure her family could use some supportive comments.

Thank you!

A Different Perspective

The other day I was feeling a weight on my shoulders. You might know the one. I'm sure most Heart Mommies, Transplant Mommies and Daddy's too have felt it at one point along the road. The weight of knowing that it's never over. That it's not something that can be healed with an antibiotic or that is cured. It's a life time journey.

I'm fine with this.

It was the reminder of how short a time it might be that bothered me.

Hearing of Brandi's passing and of Kenzie's rejection really upset me. Not only as I grieve and pray for their families but also as I worry about what the futur may hold for Noah.

The fact that I almost lost him on several occasions never has a difficult time reminding me of that pain.

And then there was a light in the dark tunnel I was clouding myself in.

I saw a blog post on my (extended) cousin's blog. The same cousin I turned to when I learned of Noah's need. Because she had been there once. Many years earlier she was diagnosed with Cardiomyopothy and received a Heart Transplant.

Her post?

"Today makes 20 Years Post Transplant."

My fog lifted. My joy was not only for my cousin. It was also for Noah. (And Kenzie). Yes, there are some journies that are cut short. But then there are some whose journy is just beginning. Even with 20 years...

I don't know when Heavenly Father will call Noah home. But I know that he WILL full fill his mission in this life before he goes. He was given that promise.

So now, I just have to have faith. Faith that God's will will be done and then I have to pray... That it won't be done for 80 more years.

And hey, 20 years is a good place to start.

*Happy 20 years post transplant Kalli! That's a true testament to your strength, your determination, and your love of life. All things I hope to instil in Noah. I love that both Noah and Beckham have you to look up to. Because I know how truely we do need you!.**

An Update, An X-Ray and Some Sad News

Noah's recent Cardiology appointment went really well!

We started out the day by getting to the hospital bright and early since he has to have his blood drawn 30 minutes prior to receiving his morning dose of Neoral. He recognizes what's happening now and he gets sad and cries but he is quick to be comforted and move on. He did so well he got a very cute white teddy as a prize.

Then his echo was next. This was the best echo experience since he was a baby in Denver and would just sleep through it. This time he drank some of his bottle, watched some cartoons, and played with my phone. I also taught him how to sign mouse. He thought that was neat. He didn't cry or grab at the wand and wires. I was very relieved because I wanted him to get a good echo so I knew the results would be correct.

Then his appointment was next. Dr Everett said he was doing great! He passed all the tests. His echo looked great. I still need to take more blood monday morning to send to Denver to check his med level but other than that we are good to go till our trip to Denver in June.

Next up was his synagis shot and checkup with Dr. Samson-Fang his pediatrician. I love her. She is so helpful and never makes me feel stupid for my concerns or questions and she is very helpful. He got his two awful and painful shots. Then was checked out due to his booger cold. No ear infections and it seems his breathing treatments are keeping his lungs clear. So he just has to wait it out. This is fine as long as its just boogers. So that is good. While we were there I also asked her to watch him walk. Noah turns his left leg out when he walks. I think this contributes to his lack of balance and I wanted to get her thoughts. As soon as she saw it she gave us a referral to see an ortho specialist and sent us for an X-ray of his hips. Better safe than sorry.

His X-ray turned out fine and he has the specialist app early next month to make sure he doesn't need a brace or something. Not a big worry. A brace or therapy should help if its not something he will just out grow. So more details on that after his appointment.

It was a very busy day but all in all it was good.

But now the bad news.
My good friend Monica (who I met in Denver and lives here in Utah) is back in Denver with Kenzie. Kenzie was sick for a bit and it turns out it was rejection. I don't want to share too much of their story without permission but I had to put a prayer request out there. Kenzie (and her family) are in need of your prayers and good thoughts. Please remember them for me.
While in Denver Monica also found out that our friend
Sam's little sister Brandi passed away this past December. You might remember me telling you about Sam. I first met her shortly after we got to Denver. I actually met her at the same time as Monica and Kenzie. Sam had cardiomyopothy and had just gotten her heart transplant. Her sister and brother also needed heart transplants. Their story has been featured in People magazine. Its rare for three members of the same family to all have this same disease and need a transplant. Well, about two months after we came home Sam and her family came back to Denver so her sister Brandi could get her transplant. Well, last December Brandi got sick with a virus and unfortunately passed away.

This is very sad for me and Monica. We both love this family. Their loss is our loss.

It's also a grim reminder. Even after things calm down and life gets easier you can't let your guard down. Transplant is a miracle and a gift from God. But it is also a road that has many ups, downs, and curves. Every day is a gift. Every single day!!!

Update and Recent News

I'll get to telling the rest of my story from the previous post soon. For now, I wanted to let you all know how Noah is doing.

All things considered, he is doing GREAT!

He does have a cold right now. Some nasty sinus stuff that he is having a hard time beating. He is Booger Central at the moment.

But, he is signing more and more. (Thank you Signing Time!!)

He started signing Go today. He also regularly signs All Done (as he throws things in the trash, throws his food off of his high chair, or throws pill bottles out the front door), Please (when he wants me to turn Signing Time on) and More (when the episode of Signing Time is over and he wants to watch it again).

He also says Ba ALOT because he still isn't eating too well and wants a bottle because he is hungry. Thank goodness for Formula because it's the only thing that keeps me from worrying about his nutrition. What I do is add about 4 oz of concentrated lactose free formula to 4 oz of Soy Very Vanilla milk (instead of water) and he loves it.

He has a cardio appointment and his next Synagis shot on Thursday. If all is well, he won't need to go back until we head to Denver in June. YAY!!

I also finally got a referral for him to see a geneticist. I called to make the appointment and they can't see him until Sept 29th. Yes, September. How crazy is that?? I'm not taking him because I want to know what caused his heart defect. I want to take him to find out if he has some sort of defect that might cause things in addition to his CHD. That way I can plan ahead for his care and hopefully catch things early. If he has a diagnosis, it also might help me get better state funding for him.

He is still full of kisses (even if they are snotty ones, I take them) and he loves playing with Lilly. They two crack eachother up and laugh all the time. It's music to my ears. They like playing in the bath together. Poor Noah gets a bit picked on because Lilly likes to dump water on his head. Luckily he doesn't seem to mind.

The yucky part, is we are STILL on lock down. Even more than before since there seems to be a nasty tummy bug making the rounds. I have had to keep Lilly home from more things too just so she doesn't bring the buggies back. She is SO antsy to go outside and play. I sure hope Spring comes quickly.

But I must say, one of the funniest things going on in our house right now is Noah taking his asthma nebulizer treatments. We are up to twice a day since he is sick right now but that's okay with him. He loves it. What I usually do is put the mask on him and we sit in his rocking chair and I sing him songs. Well, not really songS. More like a song. He wants me to sing him Rainbow Salad from Signing Time over and over and over again. So we rock back and forth while I sing it to him. He loves it so much, that I catch him in his room sitting in the chair rocking and holding his mask several times through out the day. Makes me laugh EVERY Time!!

In CHD news, it's February again. Which means Congenital Heart Defect Awareness week starts on the 7th. So, I am going to try and post some informative posts over the next few days. Please help me raise awareness by adding the CHD banner and button to your blogs. Posting about it would be awesome too.

Noah wouldn't have needed his Heart Transplant if it wasn't for the Congenital Heart Defect he was born with. We need to raise awareness about CHDs, not just to learn more, but also so parents can learn to recognize the symptoms. It may just save a life. Either way, it's a topic near and dear to OUR hearts and for good reason. Please help me spread the word.

I will update again when I get the information back from Noah's tests on Thursday.

Much Love,