Resource Roundup: Awesome Kids Foundation

I was lucky enough to come across this foundation a month or so ago, the founder is amazing! I emailed her about Hunter becoming an Awesome Kid and she emailed me back within 12 hours. She is so understanding, so willing to help and she cares! I cant wait for the day I can do more for these kids! All of them have amazing stories, so if you have a minute stop on by and read there stories and if you feel compelled donate!  

Website: awesomekidsfoundation.com 
Facebook: The Awesome Kids Foundation 

Here is Hunter's Link 

Special Health Needs Blogs

As a mom to kids with a rare disease, there are days you set out to find others going through the same thing. I have a small group of moms from all walks of life that have LCHAD kids but for some reason I still find myself searching online for happy blogs about kids with rare diseases and let me tell you the sad blogs defiantly outweigh the happy ones. Searching can put you in a dark place but for some reason I still find myself looking. 

I read on one blog sick kids are like finding a new car. You never noticed that car until it was specifically pointed out to you and then you see it everywhere. Every where I look I find kids struggling with rare diseases, diseases I had never heard of. It is heartbreaking

I decided to compile of list of blogs that are not overly heartbreaking. Stories of kids with rare diseases but they still look at life as their glass is half full, rather than half empty and depressing all the time. 

I hope if your online searching for happy special health needs blogs you come across this post and your day is not so depressing. I hope these blogs leave you in a better mood even though I know first hand how hard some days are. 

Epilepsy warrior www.justsayhi.org

Rubinstein-Taybi Syndrome (RTS) braxtonjoseph.com

Tuberous Sclerosis Complex (TSC) www.nelsonfamily2008.blogspot.com

Oh & Special Health Needs Parents read {this} 

**I will update with more blogs as I come across them, for now I can't bring myself to search anymore 

Infants and Toddlers Program

Yeah, I had no idea what it was either until I needed it. Infants and Toddlers is a program for early intervention for children ages 0-3. Any child showing delays of any sort can be recommended to the program by anyone parents, doctors, neighbors and its FREE. They will set up someone to come to your house for an evaluation and if delays are observed they will make up a plan (it has a fancy name IFSP maybe?) to get your child the resources they need. 

Walking into our appointment!

Hunter was referred to this program by his neurologist for possible speech delay. Prior to his hospitalization he would say "mama, dada & uh-oh" all the time but since hasn't said them much at all. The fear with LCHAD and them having metabolic crisis is it can cause developmental delays and mental retardation... Hunter's had two metabolic crisis.

Last Wednesday, Hunter had his evaluation.  We did it at the elementary school after we dropped Alexis off at pre school (first day, yay!) they came back and confirmed what I knew, his speech is delayed. The only thing that caught me off guard was they said he is at the same level as an 8 month old... um, what? That seems a little drastic to me but oh well.  This Thursday (Sept 4th) they are coming to the house to discuss his plan and what the schedule will be like. They did say they would be coming once a week to work with him and they normally re-evaluate every 6 months.  He can stay in the program as long as he needs or till the age of three when he will transition into pre-school. 

Here is the link to Cecil County's Infants & Toddlers program (here)

Resource Roundup: Gracie's Gowns

*I'm going to try to post resources to help us moms when I find them. I know there are a ton out there that we dont know about yet. If you know of any- let me know! 

One thing on my to-do list before flu season comes around is pack a bag so if we end up in the hospital we are ready. One thing on that list is a 'cute' hospital gown (one day he will kill me for saying that) I also want his hospital gown to open to the sides instead of the back so if he is sleeping on his belly or back they can easily undo his gown to reach what they need to and hopefully he will sleep through it. Instead of finding a tutorial to add to my to-do list I came across Gracie's Gowns. amazing! You can go to their website and request a gown for free as long as your child is under the age of 18 and have a life threatening illness or chronic illness that results in many hospital stays.   

According to their website they have sent out over 1,469 hospital gowns all across the US since they started in March, 2012. Check out there website and Facebook page for more information and ways to help, looks like they are planning something big for Christmas this year!