Adventures In Cloth

About a 6ish weeks ago (my best guess since I'm not even sure what day of the week it is most times) Noah developed a rash on his right hip. It was in a spot that was completely covered by his diaper so I knew it wasn't from something weird touching his skin. We tried all different creams on him and nothing was working. The rash wasn't getting worse but it wasn't getting better either. I thought maybe he was developing an allergy to his regular diapers so I began my search for an alternative.

I decided to try out the organic diapers that are chemical free. Boy, there is some sticker shock with those bad boys! I sucked it up and bought a small box which was actually about $5 more than our regular with about 20 less diapers in the box. While I was in the store there was a small display for cloth diapers and I was actually really tempted to buy them right then and there but I decided to go home and do some research to know what I would be getting into.

I went to work researching the brand that I had seen in the store and it sounded really awesome and I was totally excited to possibly start cloth diapering. The only problem at that point was the cost. I was looking to buy directly from the company and it would have been a considerable up front cost. I knew it would eventually pay off but I wasn't' really ready to make that big of a commitment since I was still unsure if this would even work for us. 

I also joined a few cloth diapering groups on Facebook. The most knowledgeable people are the ones actually at home, using these diapers, putting in the work every day so I knew it would be a very good place to learn and pick up some tips. I joined a website called Cloth Diaper Trader where people can buy, sell, and trade cloth diapers and cloth diapering accessories. I kind of browsed the site and quickly overwhelmed myself with all of the different types of diapers. So. Many. Choices.

Anyway, one day a post from Cloth Diaper Trader showed up on my Facebook news feed. There was a listing for 19 cloth diapers for only $65! I honestly could not believe it. In case you didn't know, some cloth diapers can sell for as much as $20 each. I immediately went and looked at the listing which had pictures of the diapers. I thought this deal was way too good to pass up so I contacted the seller. I was in luck and the diapers were still available so I went ahead and bought them. I figured even if they didn't work I got a really good deal and I could always resell them. 

Fast forward to today and I've spent about $140 on our diaper stash. And when you do the math on how much we were spending on disposables, our cloth stash has definitely paid for itself already! We do still use disposable diapers for him at night because cloth diapers are not as absorbent and require more frequent changing. I didn't want to have to wake Noah up every 2 hours just to change his diaper. We also use disposables when we leave the house just for the convenience of being able to throw them away instead of carrying a wet bag with us on top of all of Noah's equipment. So instead of using 10-12 disposables a day (which is about $3) we only use 3-4 (about $1). It may not seem like a lot but if you add it up over a week or month or year the savings is actually huge! 

Cloth diapering is not something that has to be 'all or nothing.' It is actually a lot easier to manage than I had ever realized. I encourage anyone who is curious to do some research and consider trying it. If it doesn't work out for one reason or another, there is a pretty good market for cloth diapers so you will easily be able to resell to someone who will use them. Plus, they are so stinkin' cute!

Noah modeling his black cloth diaper.

First time washing my brand new-to-me cloth diapers.

Cloth diaper inserts that I sewed myself from some scrap fleece.

Cute little booty napping in his cloth diaper.

So Much To Say One Day

When we were first told by Noah's NICU team that he needed a tracheostomy my first 2 questions were:

1. Will be be able to breastfeed?

2. Will he be able to talk?

This was many, many months before he was officially diagnosed with Pelizaeus-Merzbacher Disease (P.M.D.) so of course the team was thinking who knows? while they expressed to me, "We can try."

Of course the breastfeeding failed and we learned shortly after our 2-3 attempts that Noah had absolutely ZERO swallow reflex. I resigned myself back to my trusty breast pump because I knew that's what he needed to get stronger and frankly, that's the only thing in his life I truly had control over. Secretly, I hoped he would one day be able to at least latch on or suck for comfort. 

When he had his in-home speech therapy evaluation at just over 2 months old, I still was adamant on breastfeeding. In fact, that was one of the goals that I wanted to achieve with the help of his therapists. As the months went by and I continued my pumping journey, I began to realize that this dream of mine just may never be. I pump for almost 6 months and soon after I stopped Noah was diagnosed. 

At that point I was "okay" with the fact that he would not breastfeed. I had given him the best nutrition for nearly 6 months and we had bigger things to deal with. When I got home from that dreadful neurologist appointment (which, to this day I still cry when I think about) I went straight to the computer and began my research on P.M.D.. 

He had all the symptoms and I knew. I knew we had an answer. A devastating, heart breaking answer. When I read that most people with P.M.D. do not walk and seldom even learn to talk, I was crushed. It is still hard to think about a year after his diagnosis. And with Noah having a trach, his ability to talk is hindered even further. 

I dove into a depression after that. I cared for him and did what had to be done but I felt a certain disconnect. I'm not exactly sure what snapped me out of it. Maybe my pregnancy and my maternal instinct going into over-drive. I don't know. But at some point I realized, the best way to make this work, the best way to give Noah the greatest chance at life is to treat him as normal as possible.

Okay, that sounds weird but I don't know of any other way to phrase it. And I don't mean treat him like a regular 19 month old child. That would not be effective or productive in any way. What I mean is to treat him how I would treat a child on his level. Talk to him in a way that he can cognitively understand. When you have an infant, everyone says to talk to them about everything around them. The infant can't talk back but they are building their vocabulary to use one day when they are more physically able. And that's what I do with Noah.

His cognitive level for understanding things far surpasses his physical abilities. Which is why it is so important to talk to him. There is even room for discipline in an appropriate way. My hope is that one day, once we finally unlock the magic door to Noah's speech that he will have so many tools and have so much to say. I'm fairly certain that he will have to use some type of communication device, whether that's an iPad or something else. But I can tell that he is smart. He knows what he wants and he tries his hardest to communicate his needs the best way he knows how. Right now that is mostly by crying but I know that with some hard work and lots and lots of practice that one day we will find a better way. 

I know we have a long way to go in the communication department and I don't know exactly what "talking" will look like for us in a few months or years. But I hold on to hope. And I want to give hope to other parents or caregivers going through a similar situation. Please talk to your child. Please give them every opportunity to show you what they can do. It may seem pointless or silly to talk to someone that can't talk back but it's not. It probably means that world to that child even if they can't express it to you. And if they can express it, it will make you feel that much better and it will make your relationship that much stronger.   

Here is a picture of Noah playing with his favorite app on his iPad.

New Wheels For Noah!

For awhile now I have wanted to do a t-shirt fundraiser. I just never could get the phrasing or logo looking quite right though. But I think I have finally done it! I have a t-shirt fundraiser up and running from a site called Booster.com.

The shirts are selling for $20 each and there is also an option for donating beyond that. The shirts will ship directly to the customer (US only) about 2 weeks after the end of the campaign. The campaign is set to end on March 9th which means we have about 18 days to meet (or hopefully exceed!) our goal of 75 shirts.

If you would like to order a t-shirt (or a few) please click here to go to our fundraiser page. The shirts are available in two colors, black and turquoise. The turquoise color is also available in youth sizes and I am working to get the black in youth sizes as well.

If you have any questions about how to order, donate, etc. please contact me through my blog, by email at dev_henderson01@yahoo.com, or through my Facebook page at facebook.com/amiraclenamednoah.

Here is a picture of Noah to say "THANK YOU" for your support!

Lots of Love

I know, I know. I am terrible! It has been forever since I have written anything on my blog. I know. There is always a lot going on around here plus I'm now 29 weeks pregnant. So when I do get some "free time" my first thought is usually about sleep. Anyway, enough excuses. I seriously plan on being a lot more active with my blog because there is just SO MUCH to talk about!

This post is just going to be a little "re-introduction" of sorts. I didn't want to bog down my first post back from the dead with too much medical stuff or anything too serious. Plus, it's Valentine's Day so I wanted to share some pictures of my sweetest Valentine's. I hope you enjoy!

Happy Valentine's Day with lots of love from the Henderson Family!