Getting it off my chest

Sweet sweet, little man! I still cant believe you are 5!!!

 

 I wish I could see you the way the rest of the world sees you: as this vibrant full of life spunky ornery 5 year old. I'm trying sweet boy, trying so hard, but all I see is that sick little baby fighting for his life day after day and a momma helpless to do anything about it. It's not fair to you!

 

They tell me he's doing great, he doesn't need any extra help! That is music to my ears, it really is, but what if we're missing something!

 

They tell me don't worry so much, that its in Gods hands! I know, I'm the one that gave that sweet baby back to God all those years ago. But what if these past 5 years have just been a test and the bigger trial is coming.

 

They tell me kids like him have a rough start, they grow out of it! Then why do I see stories of babies whose mommas thought they were doing good and then bam their gone from this world. What if that's the other shoe for us.

 

 

I'm not posting this so you'll stop telling it to me, I just wanted you to know what it's like for me. Living in this world, where you have to be the one to keep it realistic, to always at the back of your mind remember how he started his life.

 

If your a momma struggling with any of this, your not alone!!!

 

We are to help carry one another's burdens, I'm here to help you with yours!!!

 

Please don't take this personal, I'm not singling any one out! I just needed to feel the weight of this lifted off my chest.

 

 

 

School days

Hello! :)

             Our miracle boy has turned into a school boy!
                 Oh where oh where has the time gone!!
 
      Our first day drop off went great! He was so excited he wanted to walk there himself! I was foolish in thinking it would be that easy. The second day there were apparently tears after I left but none while I was there. Then the third day came and he chased me out of the room. Days 4&5 he stayed at his table but still cried. He is also a lot more rambunctious then my older 3 were, 2 of which had this same pre-k teacher! She has quickly learned that he is nothing like the other 2! We ended our first week with a cold, of course with Jo it's never just a simple cold. :'(

      Waking up at 1 am to the sound of wheezing coming toward you will never get easier! 3 breathing treatments, a call to the local ER, and a heart attack (by mom and dad) later we all settled into bed to get some rest. Monday we went to see the doc to make sure it wasn't to serious, thank The Lord it wasn't! But we got a rash from our antibiotics or prednisone, which means next time we have to find new ones to use! I'm still struggle with figuring out if we need to find him a pulmonologist or not. I fear all these colds all the time and these steroids are causing more damage then actually helping him. We've got his 5 year check up soon, guess I will talk to his pedi about it. :-/

       Our second week of school went a little better, we cried the first 2 days but the last 2 he looked very nervous but waved to me as I left. That makes me feel better at leaving him, so heart breaking to have to leave him when he's crying. Unfortunately he got his first taste of punishment from his teacher. I was expecting it, but I had hoped we'd be a little further into the school year before he'd act up! He punched a kid :-( I have a feeling it's only the beginning!!! :-/


         CAN YOU BELIEVE HE WILL BE 5 in 10 DAYS!!!!!!!!!!!!!!!
                                I know I can't :'(

Update

Hello!

        Can you believe it's AUGUST already!!  I know me either😔 This summer has gone by entirely to fast.  For the first time, in ever probably,  I'm not ready to send my kiddos to school. We've had a very lazy summer. Visiting family is pretty much all we've done😄 besides the yearly dr visits for Jo😝  Oh and we bought us  a house!!! Yeah😄😃😀

In June we went to see Jo's cardiologist: Great Report😀
But of course drs have to give you something to worry about😕
that's what there their for after all, right😬😳

Since Jo is starting school, yes you read that correctly, more on that in a bit! Anyway I asked the doc if we need set some limits or watch for anything. He said "heart wise no, heart looks great🙌👏🙏 but these kids start developing lung issues and such once they start school👎😩😫" So now I'm worried that we will have a lot of curve balls thrown at us. After all that is Jo's specialty😉

In July we went to see the eye dr, got great report. No change in his eyes, other then him being a stubborn boy it was a great visit😊.

My BABY starts school in 2 yes 2 weeks!!!!!!!!!!!! Ahhhhhhhhhhh I'm so not ready for this😭😢 I really try my best not to think about it. I do pretty good, but those moments when I do think about it, panic is not even close to what I feel!! I really hope he can enjoy school and not have to be home sick more days then he is actually in school!!

Team JoJo update

On Monday, January 5, I made a decision that was very hard for me to make. I decided to put team JoJo on hold. I have been feeling very overwhelmed and frazzled with trying to figure how to get the word out about it, finding families to help and how/what to do for them. To me my family will always come first, and I saw that I was neglecting them. Not just with team jojo stuff but also with many other things. So with the new year upon us I'm making changes! Once I feel that my number 1's are well taken care of, I will start looking back into ways to help CDH families once again. Thank you to all our supporters, without you nothing we have done would have been possible.

New year calls for an update!!

Hello!! My how life just seems to be rolling away!! and boy am I struggling to keep up. JoJo is doing good, he's battling a nasty cough, been sick with a stomach bug, fever and some more fever, all in the last 2 weeks :( We have been working, let me re-phrase that, we tried, not the right words either, we attempted, yeah I'll go with that. I attempted to potty train jo after his birthday back in September. But I'm just no good at remembering to take him, so we are currently back at square one. I'm going to attempt again and with this new journey I'm embarking on, hopefully we will get it.

Everyday I'm dreading this coming august, it's getting closer by the second!!! I'm not prepared for sending him to school!! It terrifies me!!!! But it will be good for him, so we will put our big girl panties on and wear out our praying knees and have faith that all will work beautifully and He Will Have A Blast!!! hopefully he won't be as big of a handful as I'm imagining.

Fundraiser!!

Please help our fundraiser!! Friday is the last day and we are far from our goal! http://www.booster.com/teamjojocarepackagedrive

Birthday!!!

Our miracle boy is 4!!!! I still can't believe how far we have come. Praise God for helping us make it this far. If you have read the previous post, you know that the next few days are the anniversary days of his most challenging days. It's hard to grasp that just 4 years ago he was fighting for his life and now he's fighting with his siblings!! I am in awe of this boy 😊 He is a survivor, and  I am blessed to be able to say that I'm his mommy😍

Now down to the facts: he weights 31.1 lbs , which puts him in the 10 percentile. He has only gained 1 pound since the last time he was at the pedi, 3 months ago. I'm still figuring out if I'm happy with that or not😔 He's still following his own curve and his dr didn't make a big deal about it. Plus he eats everything in sight so I guess we will just have to accept him being a skinny minnie 😉

He was 3feet 3 inches, 22 percentile!

He is doing really great😊

Now if we can just survive the winter without any major hiccups, we will be in great shape!